New Face of Autism...GFCFSFRFCFYFEF

Dear God, Please Send Friends

2012-01-10T20:51:00.007-06:00

We are now here and living in Nashville, TN! We were fortunate enough to sell our home in MN and buy a home close to a wonderful school for Aleks. My hope was that when it came time to update this blog that life would be settled down and Aleks would be well adjusted and happy. Well...have you ever heard the saying, 'Want to make God laugh?...Then tell him your plans.'

I think that I had forgotten that saying until just now. This move and our adjustment remind me that life happens in God's timing and his schedule.

What this move has taught me is that for a child with autism, a major move is more difficult than any of us (especially me) ever counted on. I thought I understood how difficult a new school and leaving her friends would be. What I didn't realize is that for her, the friendships were her family. For Aleks the friendships she had were vital to her stability and happiness. She had cultivated these friendships for the past several years in MN and leaving them left a hole in her heart. She talks about her friends all the time and she misses them every day. A lot of autistic children have trouble connecting and make true friendships. A lot...but not all autistic children. I remember her teacher in MN telling me that Aleks has real friendships and to make sure her new teacher knows this. She had read the opposite and wanted me to know that Aleks opened her eyes about this subject.

My hope and prayer for her is that she makes those same kinds of friendships here. I worry that the move was too much on her. I worry that I somehow failed her by making her leave all that she knew. I am scared that it is taking so long for her to make friends and feel connected. I'm scared of her acting up in class because she is nervous. I don't share these fears with many people because there is part of me that feels like by saying them out loud they'll be more real. The problem is that my fears have kept me silent and I've promised to share the good and bad in this blog. As always I hope that by sharing the truth of what we're going through it will help all of us grow and learn.

Blessings xo Melissa

A Move and Changes are Ahead...

2011-09-17T09:06:00.005-05:00

Whenever I look at this picture, it makes me happy and sad all at the same time. Why? Well, because this picture is everything we've loved about living in Minnesota and what will make it so hard to say good-bye as we move and leave for TN. We had to tell Aleks recently that we're moving and leaving behind her friends, which really are our family, to go someplace unknown.

It is with great sadness and joy that we are leaving. We're sad to leave behind our friends and we're filled with joy at what God has ahead for us as a family in Nashville.

Telling an autistic child that a major change is ahead was scary for us and for her. We weren't sure how she would handle it and whether she would totally grasp the changes ahead. The good news is that she got it, she totally understood that TN would mean leaving MN and moving away. The sad news is that since she got it, she has told us she doesn't want to leave. Besides the reasoning of leaving friends and her school, she said that she doesn't want to leave because, "Mommy, Minnesota has all of my favorite letters in it....M...N..."! She also said that we have to tell our real estate that we want a new house, but in MN, not TN! Pretty funny stuff. She is getting better about moving. What I've learned is that she does understand more then I give her credit for and that she really needs this extra time to process and deal with the move.

As we're preparing for the move, it also means finding the right school and teacher. That for me is the scariest part and hardest part. I know that we really get one shot at moving and getting the right school. We can't ask her to keep making changes so we need to move from MN into her 'forever' home in TN. We also need to make sure that the school is right and can provide for her. She will need the stability of having a home and school that won't be changing anytime soon. For that reason, I ask for your prayers in selling our home quickly so that we can give that to her. BTW, I will continue our blog in TN.

Melissa

Goodbye Sweet Friend...We'll Miss You!

2011-07-18T18:57:00.004-05:00

Saying good-bye to a friend is heart breaking. Double that when you watch your child cry and say good-bye to their best friend. For the past year we've been blessed with Kayden, Aleks' best friend living behind us with her grandmother. We couldn't have asked God for a nicer, more understanding friend for Aleks. Kayden understood Aleks quirks and loved her unconditionally. Wow, I know I can learn a lot from Kayden about being a friend.

I was thinking as I cried on Saturday when Kayden told me they were moving Sunday (yes ,the next day) that every day is precious and you just never know what God has in store. I feel so blessed to have witnessed such a great friendship between two little girls. I was thinking that a year plus ago, my prayer to God was for a best friend for Aleks. I don't think I realized until today that God granted me an amazing gift by having this little girl in our lives. It reminds me of the saying..."Some people are in our lives for a lifetime, some for a season." I'm thankful for this past season.

Kids Can Be So Darn Mean!!

2011-07-11T20:19:00.004-05:00

Kids can be so darn mean. Haven't we all heard this numerous times and probably said it ourselves. One of the difficult aspects of having a child with autism is seeing how some other kids treat her. I have come to find her quirks and bluntness charming. I know though that other kids have called her behavior 'odd' and 'weird.' I witnessed today a group of girls, a little older than her, being rude to her and rolling their eyes at her. I was furious! To one little girl, I simple told her, "You could say no thank you." (Aleks offered her a drink). You know what, the little girl even rolled her eyes at me. So what do I do? As an adult and as a parent I feel like my choices are so limited in regards to other people's children. Do I say something to them? I feel like I have to be really careful on this one. I always say, how would I want it handled if it were my child. Do I talk to my daughter about their behavior? The problem is that sometimes I notice and she doesn't, so why draw attention to it and make her feel badly about herself. So I'm back to doing a lot of biting my tongue and thinking of all the things I wish that I could say.

I also feel an extra burden besides being a parent of a child with autism of also being a Christian and making sure that what I say reflects that. Here's what I will say, sometimes I do a good job of editing my comments and sometimes I don't do such a good job with my comments or my thoughts. :) I thought that being picked on as a kid was bad, but honestly it is 100 times worse to see my child being picked on. I know that today was really mild, I know that. My fear is that this is just the beginning and that I can't always be there to protect her. Knowing that I will continue to pray for her and pray that God blesses her with some really wonderful friends.

xo Melissa

Post HBOT - What We Learned

2011-07-10T14:58:00.007-05:00

We said goodbye to 'subbie' - aka the HBOT chamber on Thursday June 30th. It was with a strange mix of emotions that we finished the HBOT treatments with Aleks. We went from having to argue with her and bribe her into getting into the chamber to having her ask to go in. I actually found that I looked forward to our alone time in the chamber together. We would crawl in, zip it up and disappear into our own little world for an hour. Aleks fondly named the chamber 'subbie' as in submarine and was shouting "good-bye subbie" as it was loaded up and taken away the last day.

Was it worth it? Have we seen any changes? I think as the parents who are with Aleks every day that is a hard question to answer. I will say that both Bill and I feel like we have seen some really positive changes post HBOT. I feel like during HBOT treatments her words were easier for her to find and that her emotions were more even keel. It also seemed like making transitions were easier and less dramatic for her. Since we were gone last week it will be interesting to see how this week goes for her. My hope is that the changes we saw with HBOT are still there this week. It wouldn't be fair to her to say whether or not we're still seeing progress since she was out of her regular routine last week and usually reacts more emotional to change. My hope is that the progress is still in tact and that this week will be another one of moving forward towards healing.

*BTW, I think we did about 20-23 dives @ an average of 60 minutes day.

Blessings xo Melissa

HBOT - 10th+ Dive

2011-06-20T20:25:00.003-05:00

It's 8:25pm on Monday night and I'm doing but I bet no one else is doing right now. Anyone else in a HBOT chamber with their child?? I'm laying here with my laptop while Aleks is also using a laptop and watching a movie. We're 30 minutes in and I have to say that I now look forward to our time in here. It's strange, but the quiet, hum of the compressor and oxygen concentrator, plus Sting in my headphones is actually quite calming. The thing I've been surprised about this HBOT chamber is the time commitment it takes. When we got it for the month we didn't realize that both of us would have to be here to go for a dive to happen. With Aleks so young and a little frightened of going in by herself it takes two people to operate. Someone has to be on the outside to get the outside zipper and to monitor the pressure and take us in and bring us out of a dive. We've actually timed it so we could do the pressure valve by ourselves, but the zipper is still the biggest issue. Anyway, it's a rare sunny, beautiful day and we decided to let her play after camp vs. doing the chamber before dinner. That's how it got to be 8:30 now and we're only halfway done with tonight's dive. What I'm thankful for is that despite the odd time and the fact that I have to get up by 4am, we're still in here and making a go of it.

I've been asked what changes are we seeing. Honestly, it's hard to say but I feel like we've seen an increase in language but also an emotional increase as well. Aleks emotions seem to be heightened after a dive. She cries easier, but if we can get some fish oil in shortly after a dive she is better. I'm hoping that from what I know the emotions coming out are all part of the healing going on inside. Night! xo

More Than Just A Dad

2011-06-19T07:05:00.003-05:00

On this Father's Day I want to say a very special thank you to my wonderful husband. If you're a special needs father, this thank you applies to you too.

To be the father of a special needs child requires a special heart and a special kind of commitment. Over three years ago both our lives changed when Aleks was diagnosed with autism. Although we were both like fish out of water when it came to our knowledge of autism, we were committed to figuring this diagnosis out and getting help. Our jobs were different, but both part of the puzzle. I was the primary researcher and Bill would follow through and implement the needed therapies, diet, supplements, etc. Ever since we moved to MN and Aleks was diagnosed, he has selfishly given up a good chunk of his life to help our daughter . At one point he was at Children's Hospital four days a week for therapies, in addition to driving an hour plus round trip to take Aleks to her DAN doctor. He kept Aleks calm for her chiropractic adjustments, ran to the store to get her supplements when we would run out and sat through countless hours in the observation room and waiting rooms at Childrens. I know we wouldn't have the recovering little girl today that we have if it weren't for her daddy. That is why on this Father's Day I want to say thank you to the most committed father I've ever met, my husband. As Aleks says, "You're the best daddy in the whole entire world and I love you."

Getting 'Glutened'...Seriously annoying!

2011-06-18T10:32:00.006-05:00

I recently (Thursday morning) went out to breakfast with my boss and co-workers. As I always do, I asked the waitress about gluten free and what/if anything they offer. I listened and made my choice upon her recommendations. Fast forward an hour and I've been eating and am certain that I got 'glutened'. Not sure if that's a real word, but it's my word for when gluten gets in the diet of someone with Celiac or on a GF diet. So, I got glutened and felt like I've had the flu for the next two days. I had an awful headache, stomach ache, other stomach/intestinal issues and my thoughts were very foggy. I had trouble putting words together and an even harder time trying to 'find' my words. If you listened to my show on Friday, you probably heard a lot of that. :)

One thing I've become aware of, gluten infractions don't get taken seriously by most restaurants and employees. I understand that my throat won't close up or that I'll need an Epipen, but getting glutened is a serious physical problem for those of us who can't eat gluten. This blog isn't meant as a rant as much as it is an awareness and learning experience for me and hopefully you. I believe that you can't force other people to change, but you can try and educate them and learn for yourself. What I learned is this:

1. Don't take a server's word on GF - TALK TO A MANAGER

2. Ask them to check the labels of food - Better - CHECK LABELS YOURSELF

3. IF they aren't 100% certain - DON'T eat it

4. Carry GF digestive enzymes with you at all times

5. Take GF enzymes with food when you're out - That way IF you get glutened your body will get some extra help in breaking down the infraction gluten

6. Be prepared to feel badly if you get glutened - If your child gets glutened be patient and prepared for crabby behavior

7. Don't be embarrassed to stand up for yourself or your child regarding asking for a GF food item. Also, don't be shy about stating the importance of making sure that NO gluten gets in the food.

My hope is that in the years to come that people with gluten allergies/sensitives/Celiac disease will be taken more seriously. Sometimes it seems like people think is a new diet I'm on or a fad way to eat. It's not. It's serious and has life altering consequences. To those of you working in the food industry who take it seriously... a big, hearty THANK YOU.

HBOT Day 4

2011-06-10T19:47:00.004-05:00

Day 4 - 60 minutes - w/Bill

We still feel like we're seeing more talking immediately after HBOT. Today, we saw her being a bit sassy after she came out of the chamber. She was talking back and just being a little bit difficult. So, we gave her apple juice with Fish Oil(Nordic Naturals - liquid). After the first glass was finished she seemed to calm down. Now it's been almost an hour and a half post chamber and she seems more calm, still talkative but not as sassy.

Melissa

HBOT...DAY 2 & 3

2011-06-09T19:42:00.006-05:00

Day 2- 6/8 - 5PM for 50 minutes w/Bill

Recap of Day 2 w/ Bill yesterday - 50 minutes in the chamber

First, we didn't notice a difference with her sleeping the night after her first treatment and we didn't notice any sleep pattern changes last night after the second dive. We do feel like she was more talkative yesterday after her dive. She also seemed to be in a better mood and more alert. It was still difficult to get her in the chamber yesterday, there were a few tears, but better than day 1.

Day 3 -6/9 - 3:35PM for 55 minutes w/me

First, a huge success today...no tears!! She actually told me that we were going to get in the 'sub' (HBOT chamber) together today after I got up from my nap. When I got up, I asked her and she willingly climbed in there with me The best part is that she didn't freak out, didn't cry and made it with minimal ear discomfort for this dive. Then we made it for a full 55 minutes, victory! I don't feel like I saw any changes in her talking today, but to be fair she went and played with a friend in her room after the dive. Her appetite was the same but we did see a little arm flapping post dive. This could be just her or it could a post dive reaction. I know I've read that some children have symptoms like hyperactivity due to yeast or fungal die off. Tomorrow day 4 and then we can do 2 dives a day Saturday and Sunday. More updates will be coming...

** VERY IMPORTANT**

You must be taking fish oils while doing HBOT treatments. I have been exhausted this week, mono like exhausted and couldn't figure out why. I called our doctor who said it is imperative that you take fish oils while diving. Why? Your body is detoxing and must have the fish oils to do its job. I took 6 of them today (high dose because of being so depleted) and already feel like myself again. Side note: Aleks was already on a high dose so she has been fine.

HBOT - Day 1...

2011-06-06T19:23:00.007-05:00

The HBOT - Hyperbaric Oxygen Therapy chamber is up and in our home. The chamber, concentrator and compressor are the three parts that deliver oxygen in a pressurized chamber. To better understand HBOT and why we're using it to help heal Aleks, here is a link to the Holland Center which is located here in MN. They are a FANTASTIC organization and a great place to start if you're new on the autism journey. They do a great job explaining HBOT and what it can do for our children.

Day 1 - June 6th - 5pm - Time in fully pressurized chamber- 45 min.

Post Dive Changes: Mood seemed better post dive/More talkative?

This is truly our first full session today using the HBOT chamber. The first time we actually tried the chamber we underestimated the pressure it puts on the ears. This scared Aleks and sent her into a panic. This time, we were prepared for the ear pressure and also for the panic of being in such a small space and the noise of the chamber.

I think both Bill and I also underestimated how difficult it would be to get our daughter into the HBOT unit. The chamber is seven feet long and once inflated just tall enough for her to sit up in and tall enough for me to sit up in, if I'm bent over. It's meant for laying down and is big enough for both of us to stretch out in. Aleks didn't mind crawling in with her blankie, Pillow pet and iPad, but she did mind when we zipped it up and started the concentrator and then the compressor. You could actually see the panic in her eyes. I saw it firsthand, because I was in there with her. In fact, one of us will be in there with her every single time we go in for a 'dive'.

The chamber pressurizes slowly and effects your ears a lot like flying. I would say it's a little more intense than flying but once it's fully pressurized you don't feel the ear pressure anymore. Today when we went in for our 'dive' I could see Aleks start to panic(pounding and screaming to let her out) and complain that the chamber was "freaking her out". We had given Aleks her first half stick of gum for her ears and also taken some juice in there for her so that she could swallow and allow her ears to pressurize. It wasn't easy keeping her calm and in there but after the first 10 minutes she did calm down and was able to watch a movie on the iPad. We actually got 45 minutes out of her before she had to go to the bathroom. All in all, success!

From here on out I'm going to update how long we went in and any changes we see with her behavior, speech, sleep or whatever the HBOT effects. Both Bill and I did notice that after the chamber she was in a great mood and seemed more talkative.

Melissa

We're Going HBOT Baby!

2011-04-28T17:10:00.004-05:00

It's not that I am so smart, it's that I stay with problems longer. ~Albert Einstein

If you're looking at this picture and asking yourself what in the world is that, say hello to HBOT. HBOT is otherwise known as Hyperbaric Oxygen Therapy. It's a therapy that delivers pure oxygen in a pressurized chamber. The HBOT was originally used to treat Olympic athletes who had injuries. It was found that the pure oxygen helped their bodies heal faster. Then it was found that HBOT also worked on stroke victims to help their brains heal...then the autism community found out about it. Like most biomedical treatments for autism, HBOT is not paid for by insurance and of course isn't cheap. What we do know is that thousands of parents swear that their children's symptoms, language and behavior changed for the better after doing a series of 'dives' in a HBOT chamber. Dives are the time that the child/parent go into the HBOT chamber and stays in their breathing pure oxygen.

For us, it hasn't seemed like the right time until now to try out HBOT. There were issues with other therapies, school and finding the time to travel back and forth every day for treatments. We decided to try something new this summer. With the help and advice from our DAN doctor, Dr. Spore, we are renting an HBOT chamber for a month this summer. We'll be able to do the dives at home. What finally made us decide to try it was the "what do we have to lose" idea. Money? As my girlfriend Julie said, "Money, you can always make more." True, so what's to lose from trying HBOT? We decided that now is the right time for us to try this. I'll be giving updates once we start on what we're seeing, what's it's like and whether we are seeing progress. HBOT helps increase blood flow to the brain and we know from research that the brain is able to heal itself. To me, this is really exciting and a natural way to help Aleks body and brain heal. We'll keep you posted! If you have any advice or questions, please let me know. I'll be more than happy to answer them in my future blogs.

Faith, Hope & HEALING ~ xo Melissa

Happy 6th Birthday to My Angel

2011-03-28T20:25:00.003-05:00

My beautiful, little girl turned six on Sunday, March 27th. We are celebrating not only her turning six, but also that after 3 years she graduated from Occupational Therapy. We went from being at "therapy" (physical, occupational & speech) for four afternoons a week to now being there one time a week for speech therapy. We are so grateful to Kathy, Aleks' OT, for her hard work with Aleks. She truly pushed Aleks and didn't graduate her until she had repeatedly passed numerous tests for her age level.

One of the lessons I learned from this, is that you have to fight for what you know is right with your child. You are your child's best advocate. Aleks original OT was good for the first year, but was ready to graduate her after that year. We knew that she needed more OT and wasn't nearly ready to graduate. We fought to get her another therapist and after 2 wonderful years she graduated with the skills she needed all along.

Some days I am a quiet advocate, other days it seems like an endless fight. My biggest fear is that I'll miss something. That I'll miss a battle for her health and well being that I should have been aware of. Like so many other moms of kids with special needs I have a full plate with Aleks, work and life. I have to constantly remind myself to stay present and alert to her changing needs. I also write this aware that it's not just me. I am blessed to have a husband who is so active in her life and her healing. It's a team approach and I count on his observations and insights to what he sees that I may miss. My hope and prayer is that we will stay aware, observant and not slow down in our quest for her health and healing. xo Melissa

Losing a Tooth Can Be Scary

2011-01-18T19:51:00.005-06:00

Losing a tooth can be really dramatic when you're on the spectrum. I never would have known that before my daughter Aleks came into my life. In fact, I thought the most important part about losing a tooth all had to do with the tooth fairy and how much money she left under the pillow. Two lost teeth later and one still loose tooth, I have an all new appreciation for what Aleks must have felt when she lost her first tooth.

Her loose tooth story begins like most kids. Aleks had a loose tooth, asked what would happen and was excited at the prospect of losing a tooth. The reality was very different. Aleks came home from school that day and said 'Mommy, my tooth is super loose.' She was eating her dinner when she yelled that her tooth just came out. She pulled it out of her mouth, looked at it and handed it to me. I told her how excited I was for her, which is when her tears started flowing. I thought maybe I acted too excited, was too loud or something along those lines. That wasn't it at all. She was upset because as she said, "Mommy, I lost part of my body." Wow, I had never looked at losing a tooth quite like that. She sat on my lap, we held her tooth and I let her cry. I then explained that it was okay to lose a tooth, it was a baby tooth and since she was becoming a big girl she needed a big tooth. We got out a mirror and I showed her the tooth that was coming to replace it. I also told her that everyone loses teeth and that she'll lose more but that there will be others to replace them. Finally, she was okay with losing her tooth. The night ended with her making me promise that the tooth fairy wouldn't take her tooth and that she could keep it. She said she was also scared of the tooth fairy coming in while she sleeping and that it scared her. Good point, that would scare me too!

Melissa

Working On My Cookbook

2010-10-10T09:43:00.004-05:00

I am so excited to finally be working on my cookbook! Having a child who is not only gluten free, but also casein, egg, soy, rice, corn and yeast free is really a challenge when it comes to baking. Every bakery and pre-made mix requires eggs or has rice flour in it, making it obsolete for us. Also, at the moment there is no place to buy a birthday cake, cupcake, cookie, cracker, etc. for my daughter. This is what lead me to start my cookbook, but is also having me toying with an even bigger undertaking. More to come on that later!

Anyway, the cookbook is in it's infantile stages but at least it's underway. I want to throw an idea out there. If there is a recipe you would like converted to gluten, dairy, egg free and you wouldn't mind my using it in my cookbook, please email it to me. I'll title it however you like in the cookbook if you allow me to use it. I've started doing this with my family's favorite recipes and I love knowing that Aleks is eating a variation of my mom's chocolate chip cookies. If you're interested just email me and send me the original recipe, what you'd want it called and I'll start working on converting it into one of my own recipes.

Also, I'll be co-hosting Twin Cities Live(ABC/Ch.5 @ 3pm) on Thursday October 28th and doing a gluten free cooking segment. I'll be featuring my gluten, casein, egg free cut out sugar cookie recipe. It's perfect for Halloween cookies!

God Bless-

Melissa

Running a Race for Special Kids

2010-09-21T20:27:00.005-05:00

In two short weeks, my husband Bill will once again and for the last time run the Twin Cities Marathon in honor of Aleks. Last year he came up with the idea to run not just in her honor, but to raise money for children and their families with autism. This year he is raising money for AuSM-Autism Society of Minnesota. They provide camps for children with autism, special movie showing for autistic families and educational work shops for parents. Bill runs in two weeks and has set up a website link in case you're interested in donating. Here is the link...

This past year Bill has not only been training for the marathon, but also had his own scare with melanoma. He had to take time off of training after going through surgery on his head and lymph nodes. For me, this year's marathon carries a lot of extra meaning. My daughter is in kindergarten and doing fantastic and my husband is healthy after going through his own cancer scare.

You never know what a year will bring and I am just so grateful for where we are right now, today.

God Bless you and your family and thank you for supporting all of us.

Lessons from the Summer...

2010-08-19T16:41:00.005-05:00

I am so sorry that I am just now writing again on my blog. I have to say that we have had such a great summer as a family that I have just been lax in writing. The great news is that we have seen so much growth in Aleks this summer that I feel more at ease about Kindergarten in a few weeks. I have also been blessed to talk with so many parents and teachers who read this blog and are walking their own journey with autism in so many different ways. Thank you for sharing your stories with me. I learn from you as much as you feel like you learn from me.

Some of the lessons I've learned this summer I want to share with you in hopes that they'll touch you or someone you know.

Lesson #1: My daughter is capable of so much more than I ever give her credit for. I am constantly amazed at how much she knows, how quickly she learns but also her love for life and adventure. Over the summer we had the great fortune to spend a weekend at our friends' cabin on a lake in Northwestern Minnesota. I knew Aleks would love the lake, swimming and just being with their two kids. What I never expected was Aleks riding in a special two person tube pulled behind a speed boat. Not only did she and her friend ride in the tube but she LOVED it and wanted to go longer and faster! She wasn't scared, but excited. Had my girlfriend not encouraged me to let her try I never would have thought she could do it. How wrong I was to think I knew her limitations. Check....learned that lesson.

Lesson #2: You will never believe the growth that is just around the corner. I met a teacher last year who has a daughter in 8th grade who is also on the spectrum. The teacher shared with me that her daughter isn't the same little girl who went into Kindergarten. She shared how much her daughter initially struggled in school and how different she is today. Today, this same little girl is in 8th grade, gets off the bus on her own, walks home, calls mom to check in and starts her homework...all on her own. She told me that if I had asked her when her daughter was 5 if this day would ever come she would have said probably not, but she sure hoped so. Today, I see huge jumps of growth in Aleks that a year ago I couldn't imagine. Check...lesson being learned everyday on this one.

Lesson #3: How to be a friend. This is a simple and yet poignant lesson for me. I know that a lot of our kids share this trait; they are just plain accepting of others no matter what their physical or mental challenges. Recently we had Aleks at her swim lessons when a mother and a teenage daughter with Down Syndrome walked in. I've seen this young girl many times and knew that she didn't speak very often but always walked in with a smile. Some of the other girls in the locker room were staring, not Aleks. In fact, she was in the shower in her suit and walked out and stood right in front of this young woman. She stuck out her soapy, soaking wet hand and said, "Hi, my name is Aleks. Would you like to be my friend?" I watched this young woman's face light up as she shook Aleks hand and jumped up and down. Aleks was thrilled and then gave her a hug. That was it, but it was so moving. I looked up at the other girl's mother and saw her teary eyes looking back at me. It was a huge moment of pride in my daughter and a huge moment for me of celebrating her differences.

This summer has been about lessons, adventures and amazing growth for all of us. I can't wait to read this a year from now and see where we are. To put it in perspective, 2 1/2 years ago my daughter was testing at a 12 to 18 month old range with her vocabulary and large/small motor skills. Today, she is testing at 5 years old+. Thank you God.

Melissa

Kindergarten is Right Around the Corner...Chhaannges

2010-06-01T09:57:00.003-05:00

Happy June 1st!

How in the world is another school year almost over and summer here again? It is hard for me to believe and harder for me to write that Aleks will be in Kindergarten this fall. We had the privilege of meeting with her teachers and the staff at her Kindergarten last week to get an update on her progress and to also see what next year would look like for her. Both my husband, Bill and I got choked up listening to how much progress she has made in the past year of school. She went from starting the year with some screaming and hiding to ending it being one of the top students for phonetics. The other amazing news is that her speech therapist, Susan, is recommending that we go down to ST one day a week from two. This is huge news for Aleks and credit to all of the hard work she and Susan have been doing. To give you a brief overview, Susan, our ST, has been with Aleks from the beginning. Even before she had the official autism diagnosis, Susan was there. In our first meeting with Susan, which was two years ago, Aleks screamed, hit and hid in the corner of the room. She would hardly make eye contact and just ran around or hid almost the entire intake time. Now fast forward two years and Aleks is a totally different child. She greets Susan, goes back for therapy with her and is willing to do her work. What an amazing difference! Thank you Susan!

This past weekend we spent it in Colorado for my dad's birthday. Another change in Aleks is how well she did in a room of 75 people at a rather loud party. Not only did she talk to people she didn't know, but she danced and just had fun. She didn't yell or hide and was just happy to be there. One of the lessons she has taught us is to listen to her and when she says something to believe it. So, when she looked at us at the party and said, "I need to go, I'm getting tired.", we left the party. On Sunday, before the party began, she told me that she needed me to just hold her and sit in the bathtub. I did and the funk she was starting to get into went away. I don't know if all autistic children are in touch this much with their bodies and emotional needs, but I constantly learn a lot from Aleks. She asks for what she needs and makes no apologies. When she can't do something she'll tell you. When someone is upsetting her or making her feel awkward she tells them. What an amazing concept if we could all live our lives that honestly and openly. As a parent I find that my role in this is telling people to please listen to her and if she is asking you to stop staring at her or making her feel uncomfortable to please stop! A therapist of Aleks' said this, when you keep doing something to an autistic child that they've asked you to stop, it's child abuse. Makes it pretty cut and dry doesn't it?

Thank you to everyone for the prayers and continued interest in Aleks' story. It's far from over but I love that not only do I see change, but also growth and the potential for more.

Melissa

Our Autism Story Hits TC Television

2010-04-23T11:01:00.005-05:00

I feel totally blessed to have been able to go on 'Twin Cities Live' here in Minneapolis and share our story with autism. Despite being nervous about being on television, the story just told itself. If you didn't get a chance to see it, hopefully you can CLICK HERE and watch it.

Thank you to everyone for all of the kind emails here and at work that I've received about the story. As many of you who share my beliefs know, it's not always easy. I don't think I ever really appreciated the doors that Jenny McCarthy and so many others opened by sharing their views on autism, vaccines, environmental factors and how treatments can help a child with autism. I know that although I get a lot of support, I also get a lot of resentment and just plain hate from many doctors, hospitals and families. I've been accused of being "anti-vaccine" and been told that I'm propagating lies. To this I reply, you are wrong on both fronts. Read my previous blog entries and read it carefully.

ALSO, Please join me for the second annual Autism 5K at Lake Calhoun, MN on May 15th. Click here for more information!

Much love-

Melissa

World Autism Awareness Day-Two Years in Review

2010-04-01T19:25:00.004-05:00

Friday, April 2nd is International Autism Awareness Day - Wear Blue in Support!

As a mom of an autistic five year old little girl, I am constantly amazed at a few things. First, that it has now been two years since we first heard the word autism linked to our daughter. Two years and with God's blessings numerous wonderful doctors and therapists later. I refer to this as blessings because without her Speech Therapist, Susan, Occupational Therapist, Kathy, her Physical Therapist, Patty, her DAN! Doctor, Dr. Spore or her wonderful preschool teacher, Marcia, I don't know where we would be today. Her 'team' is patient, kind, tough when they need to be and always wanting and expecting the best of her. I know how fortunate we are to have every single one of them in our and Aleks' life. When I look back two years ago, I see a little girl who was testing at around 18 months in various areas, mostly non-verbal and was lost in her own world. Aleks didn't understand much of what we said and we just thought it was a speech delay. Now fast forward two years later and her Speech Therapist just got done administering a test where she tested close to her actual age! I say this with so much respect for her and how hard she works every single day, in every thing that she does.

The second thing that I am really left with after two years is this; My daughter has autism and works harder every single day than most of us will ever have to work in our lives. She doesn't know that she has to work hard, for her it is just what she has to do. She works to find the right words to express her thoughts or finish a sentence. She works to control her body when it just wants to move and the world says you have to sit still. She works hard when she runs down our hill to get her ball and has to work extra hard to keep her feet from getting out from under her and falling down. She works hard when she puts on her coat and has to turn her body to put her arm in her coat and use her fingers to find the zipper and zip it up. She works hard at having the strength to put on her shoes and pull the Velcro straps herself. She works hard holding a fork and balancing her food on it. She works hard up until the moment she goes to bed. Then finally at the end of a day of working hard, she rests. I may never know just how hard she works, but I know how far she has come and the work it must have taken to get there.

Thank you Aleks for constantly teaching me to be a better person. Thank you for helping to grow the seeds of compassion and love that you planted when God gave you to me.

Love -

M-

Who Do I Explain Autism To & When?

2010-02-14T20:09:00.002-06:00

I don't know if other parents of children with autism struggle with my current struggle or not. With an autism diagnosis two years in our rearview mirror I am wondering now how often and who do I explain Aleks' condition to. Am I obligated to tell every person who has to spend time with her in a caregiving role? If so, do I tell them about autism or do I explain it in an easier way such as a learning disability or that she struggles with social interaction? I started really wondering this when Aleks started going to swim lessons. From the outside looking in, I would have thought that she was being difficult at times and just wouldn't listen. I finally told the instructor at week 4 that she struggles with some learning and social issues. I don't think that the instructor got what I was trying to say, which lead me to my current question. Who, when and how much do I explain about my child's autism?

I struggle too with wanting others to be more tolerant and understanding, but I'm also afraid of her being locked into a stereotype. What is the right choice? To let others think what they want of her or to explain it in hopes that she'll receive more compassion and understanding. What I'm not wanting to do is make excuses for her when she acts up like a typical child. The problem is that even I don't always know what is autistic behavior and what is 4-5 year old. Sometimes I think it's a little of both and then what do I say?

As Kindergarten is fast approaching I find that the challenges are different and ever evolving. I so want to do what is right and honorable for her. I want to empower her for who she is and all that she is. She is a loving, beautiful and smart little girl who has autism. She didn't ask for it and doesn't ask for any extra understanding. What she does deserve and need is kindness, respect and understanding. I am not always sure how to get this for her, but I know that for now it is my job to fight for her in all that I can.

Blessings-

Melissa

Ugh...Rice Strikes Again & Why Fish Oil Rocks

2010-02-07T20:06:00.004-06:00

I would love to talk about Dr. Wakefield's autism study but I'm going to leave that to Jenny McCarthy & Generation Rescue. What a great response...thanks Jenny! Please read for yourself here if you don't know what I'm talking about.

Rice strikes again! Several months ago we started putting rice slowly back into Aleks' diet. It seemed to be going so well. I was able to buy some products at the store and she seemed to be tolerating the rice products well. I started using organic rice flours in some of my baking as well as her non-rice/her typical foods, but rice was now back in. Somehow during our riceapalooza she started changing. I'm not sure when it happened but she started rejecting her apple juice with the Nordic Naturals Fish Oil & Super Nu Thera in it. So, we cut out the fish oil and Super Nu Thera thinking we'd figure out how to work it back in. Problem is just like everything it became habit and we didn't get it back in. Now fast forward several months and she has no fish oil on a daily basis, occasional Super Nu Thera and her rice intake had increase dramatically.

At this point, I have to say thank God for wonderful therapists and teachers who point out when things aren't going well. We thought all the irritability and non-compliance was due to a high fever and sickness she had last Fall. Yes, some of it was but at this point I don't believe it was all from the illness. Fast forward to January and we are hearing from her therapists and from her teacher at school that she is extra sensitive, irritable and won't follow directions easily. What is going on with our child?? You see, we didn't put the above together with her behavior at all. I sent her doctor a note and she asked about the fish oil? Oh! That's when I started thinking about all of her supplements and diet again. I reevaluated it just like I had done a year and a half ago. I knew I was going to take the rice out again, but how did I get her to drink the juice with Super Nu Thera and the teaspoon of fish out that she needed? I felt overwhelmed and scared. If this behavior kept going on her opportunities for Kindergarten would also be effected. She just wasn't fitting in. I took to praying and researching and woke up one morning and told Bill (husband) that the Super Nu Thera and a 1/4 t. fish oil had to be in her first morning apple juice. I felt confident that if it was first and extra cold that she would drink it. First time she started to stay something, but was so thirsty she did drink it. Success!! After that we made the commitment that every juice would have 1/4 t. fish oil in it no matter what.

It has now been 3 weeks since we took out the rice and put the fish oil back in. The changes are amazing. She is calmer, her therapists say she has never been better and she isn't crying as often. In fact she can bump her leg and just say ouch! I did try and give her rice again one day just to see if it was all fish oil or the combo of the rice and fish oil. The rice gave her dark circles, hyperactivity and irritability. Plus, she was seriously craving any rice product for days afterwards. Yep, rice is once again on her no eat list.

I learned through all of this that I/we have to be vigilant with food and supplements. I have to constantly be evaluating her behavior and monitoring what she is eating. I also learned that there are other ways to get the right supplements in my daughter. I may have to give mini-doses to get one full dose but I'll get there. I am reminded of what many wise parents have told me, autism isn't a race but a marathon. Thanks to the many runners who are with me.

Melissa

To Vaccinate or Not To Vaccinate? Is It Safe?

2009-11-12T18:41:00.007-06:00

I've been receiving a lot of emails recently regarding vaccinations. The questions range from asking about my personal beliefs on vaccines to whether or not it is safe to vaccinate at all. The other question I am often asked is if there is a "safe" vaccine schedule. Before I delve into any of this let me say this very clear, I am not a doctor and have no medical training. I am a mother of a child on the spectrum who witnessed first hand a vaccine injury in my own daughter. Due to this I have become a research machine. I think my time in journalism/news was a blessing in helping me navigate between medical journals, books, blogs, doctors interviews and other research. I also want to point out that I am not anti-vaccine. I am anti-the current vaccine schedule and anti-how 'dirty' or toxic our vaccines currently have become.

Did you know that according to the American Academy of Pediatrics current vaccine guidelines that a child today will receive 36 vaccines. Most of these by the time they are 15 months old! Compare this to the 1983 vaccine schedule of just 10 vaccines. In 1983, 1 in 10,000 children were diagnosed with autism. Today that number is a staggering 1 in 100. For boys the incidence is even higher. I am not saying it is all vaccines, but I do believe there is a connection. I also know that I witnessed first hand a healthy child drop into the dark world of autism following a group of vaccines. I do believe that a family history of autoimmune diseases combined with toxic filled vaccines were the one-two punch that delivered autism to our front door. I should also note that on top of these two things that it was also discovered my daughter was allergic to eggs and yeast. Both of these are precursors according to the DAN protocol not to receive the HepB and MMR vaccines. Both of which she did.

Click here for the current DAN vaccine guidelines. Click here for the 1983 vaccine protocol. I would also recommend that you head over to the Generation Rescue website to read more about vaccines, safe schedules and what a safer vaccine schedule looks like. Here are a few other questions that I think are important to ask:

Look at your current health and ask yourself how many vaccines did you receive as a child? Are you a healthy adult or did you need more? Does your family have an autoimmune disease (celiac disease is an autoimmune disease)? Do you or your child have food allergies or sensitivities? Egg and yeast sensitivity can be a problem with a few of the current vaccines. Do you know what each current vaccine is for and what is in them?

Here is what I do know and feel comfortable stating:

1. You are your child's advocate and have the right to say yes or no to any vaccine.

2. NEVER give a sick (even a cold!) child any vaccine

3. NEVER give a vaccine with thimerosal (mercury) in it

4. Ask to see and read the vial of the vaccine and the insert of any vaccine BEFORE it is administered.

5. Double check the expiration date of the vaccine.

6. Space out vaccines and break apart/space apart any double/triple all-in-one vaccines

7. Talk to a DAN! doctor before having a vaccine done to make sure your child is healthy enough and has done enough pre- and post-supplements regarding a vaccine.

I hope that this blog will make you stop, think and do your own research. I really don't feel that I should or can tell any other parent what is right for their child. I do believe though that I am supposed to put the questions out there and make you stop and think. Too often we are told by doctors or someone else what is best for our child. We believe that because they have a higher level of education and have passed rigorous tests that they know what is best. I think we transfer our children's advocacy to others all to often and all to easy. I have done it in the past and I have to constantly remind myself not to do it again.

Faith, Hope & Healing-

Melissa

Just What's In a Flu Shot???

2009-10-20T12:04:00.004-05:00

I got the information below from Aleks' DAN doctor about just what is in a flu shot. Once again, I am not anti-vaccine but I do seriously question the need for all of this in our vaccines. I use to be the biggest flu shot proponent out there. I would have sworn by them, then my daughter developed autism. Seeing how I got the flu shot while I was pregnant and gave her a flu shot at just six months old, I am no longer a fan. Is it really to much to ask for healthy vaccines??

What's In a Flu Shot?

Aluminum - A neurotoxin that has been linked to Alzheimer's disease
Triton X-100 - a detergent
Ethylene Glycol - Antifreeze
Betapropiolactone- A Disinfectant
Nonoxynol - Used to kill or stop growth of STDs
Octoxinaol 9 - Vaginal Spermicidal
Sodium Phosphate - A food additive, emulsifier, leavening agent & cleaning product
Thimerosal - (also in the H1N1 vaccine) - Mercury

If you decide not to get the flu vaccine there are still ways to boost your immune system.

Multivitamin -(Neutraceutical grade) For vitamin & mineral support
Vitamin C - Potent antioxidant, antihistamine and antiviral in that it coats the outside of the virus so that it can't replicate
Omega 3 Essential Fatty Acids - Powerful antioxidant, keeps the outside of the cell healthy so nutrients are better absorbed and waste products are more efficiently removed and supports the immune system
Vitamin D - Formed when skin is exposed to sunlight regulates the expression of more than 2,000 genes throughout the body, including ones that influence your immune system to attack and destroy bacteria and virus. Being overwhelmed by the 'flu bug' could signal that your vitamin D levels are too low, allowing the virus to overtake your immune system.

Hopefully this will give you something to think about. Vaccines are a personal choice and I understand that completely. I do believe that we all deserve to know what is in the flu vaccine. Our food has labels, why can't our vaccines?

A couple of things I have learned; don't vaccinate if your child (or you, if you're getting the vaccine) is sick at all, talk to a DAN doctor about what vitamins to increase prior to and post vaccine, talk to your doctor if you have an egg allergy (eggs are a part of the vaccine), ask to see the bottle and make sure it hasn't expired and always, always ask for a thimerosal free vaccine!

Best-

Melissa

Running for a Reason

2009-10-10T17:47:00.004-05:00

Last Sunday my husband, Bill, took off on a 26.2 mile run for autism. For the second year in a row, he ran the Twin Cities marathon and dedicated it to our daughter, Aleks. The difference this year is that besides running for awareness he ran for all the other children with autism. He came up with the idea of emailing our friends and family and asking them to support him financially through TACA (Talk About Curing Autism). There is a chapter here in MN and their purpose isn't research, but supporting children and their families. For many children with autism their families can't afford a DAN doctor or therapies. TACA supports these children financially and gets them the help that can save their lives. That is why this year Bill ran for Aleks and the thousands of other children with autism.

With the support of friends and family, we raised $2,600 for TACA of MN. Thank you to everyone who supported us financially and with their prayers. Bill made his all time personal best marathon time and did it for an amazing organization. Bill's idea made me realize what a difference we can each make when we set our minds to it. Every person and family who donated made that difference happen for our kids. They are 'our' kids too. They are our sons and daughters, family members, relatives, neighbors and children's classmates. Some day they will be our teachers, doctors, mothers, friends and leaders. What we are investing in these children now will change the world.

Blessings-

Melissa

Swine Flu Vaccine - Dangerous & Untested?

2009-09-15T18:59:00.004-05:00

The swine flu, H1N1, is scary for a lot of parents. I've talked to many parents who are concerned about their child catching H1N1 but they're equally concerned about the vaccine. As the parent of a child on the spectrum what do you do? I have my personal views on vaccines. I know that my daughter suffered a vaccine injury around 12 months and that it will be a cold day in H--- before I give her another vaccine. What bothers me is the way fear is being marketed around the H1N1 and the way the vaccine is being pushed on parents and their children. Let me be clear, I am not anti-vaccine. I believe there is a place and time for 'healthy' vaccines and I believe in a safe vaccine schedule. I believe that all children are NOT created equal for vaccines. I believe that there needs to be a test to see if a child is well enough to handle vaccines. I also believe that common sense dictates that a child with an autoimmune disease, like Celiac Disease, has a lowered immune system and can not handle the toxin load that is in our current vaccines. That being said, I am very upset at the push for the current H1N1 vaccine.

Did you know that the H1N1 vaccine makers are immune from any lawsuits from people claiming injuries from these vaccines? The Department of Health and Human Services Secretary Kathleen Sibelius has not only given immunity to the vaccine makers for any injuries that may be sustained from the vaccines, but has also given the makers of Tamiflu & Relenza immunity for injuries stemming from their use against the swine flu. If you get sick from the swine flu vaccine or from Tamiflu or Relenza in dealing with the swine flu, you will have no recourse. If the vaccine were 100% safe why would immunity be already granted?? This just doesn't make sense to me, so I started doing some research. What I found is that the 'fear' of the swine flu is propelling manufacturers to rush out vaccines that are loaded with toxins (including ethylene glycol, formaldehyde, phenol (carbolic acid) and even antibiotics like Neomycin and streptomycin.) Remember these vaccines and toxins go directly into your bloodstream. Click here to read more on the vaccines and risks.

The decision to vaccinate your child is a personal one. I can not and have never claimed I know what is right for every child. What I have learned is that we have every right and we must constantly be on guard against what we are told is the best and the right thing for our children. I don't believe that anyone purposely sets out to harm our children by advising these vaccines. Unfortunately our children are treated like cookie cutter children, where one size fits all. As parents of children with ASD we have the duty and obligation to let our doctors and lawmakers know that this is not the case. We also deserve healthy vaccines that are properly tested. Not vaccines filled with toxins that are rushed out the door to combat a so-called fear that hasn't materialized as of yet. Take the time, ask questions and make an informed decision about the H1N1 vaccine.

Melissa

Please Get Involved!

2009-09-02T15:57:00.007-05:00

I just got an email from Lisa Ackerman, the head of Talk About Curing Autism. Here is the current statistic, autism now effects 1 in 100 children. No longer is it 1 in 150 but now 1 in 100! Are we really to believe that we are having such a genetic explosion that we've gone from 1 in 10,ooo just a few years ago to 1 in 100? Should we really believe that environmental factors like vaccines aren't playing a role? Do you realize that in the current Obama Health Care Bill autistic children and their treatments are not covered? How do our lawmakers look around and say we want to help everyone and yet ignore 1 in 100 children? How do our current lawmakers and some medical insurance companies say we will cover a MRI and the drugs to sedate your child for the MRI but we won't cover ABA therapies or any biomedical therapies that have proven track records of helping our children on the spectrum. How much longer can we, the families of these children, go on being ignored by many in the medical community and the lawmakers representing us? How many children being diagnosed with autism will it take to get noticed and get the respect and answers that we need. When are we as parents, families and friends of children with autism going to be heard.

I don't know about you, but I am tired of the excuses. Tired of the research done by the CDC that says there is no link between autism and vaccines and yet they own patents on many of the vaccines they say are safe! Umm...conflict of interest?! Doctors like Dr. Paul Offit, the chief of infectious diseases at the Children's Hospital of Philadelphia, also the author of 'Autism's False Prophets' and the co-inventor of a vaccine against the rotavirus. Interesting that a doctor who invented a vaccine finds there is no connection between vaccines and autism. All the autism community has asked for is honest research and an open and honest dialogue. Difficult to get when money is wound so tightly in the mix. Am I upset? You bet I am! I am furious and I hope you are too. I would ask you to write your legislatures, state and national, petition your insurance company to pay for the treatments that are working for your child and take part in and register for your own personal advocacy account with The National Autism Association. It's simple, click HERE to register. Also, please read this sample of a letter going out to the CDC. I think it is a powerful message to all who read it.

Faith, Hope & Healing-

Melissa

Gluten Free...Me?

2009-08-20T20:26:00.004-05:00

Picture is me (post gluten free) with my Dad in Colorado

What truly amazes me in this autism journey is how much I am constantly learning about myself. A little over a year ago we switched Aleks to her special diet which included taking all gluten out of her diet. Over the past year I've stumbled onto articles about gluten allergies/sensitivities and celiac disease being hereditary. It got me thinking, "Could I have some of the same food sensitivities that Aleks does?" Once again it was an interview with Jenny McCarthy that changed me and sent me to the doctor. For years I have suffered 'stomach problems.' I won't go into many details, but let's say I was constantly bloated, running to the bathroom and ate Tums like they were my favorite candy. Most nights I would lay in bed complaining, holding my stomach and saying something just isn't right. Then I'd have a meal and for some reason all would be fine and I convinced myself that I was fine. For some reason this year my stomach took a turn for the worse. I actually think it was getting worse last year, but honestly I had no time to deal with me since we had just found out about Aleks.

Fast forward to two months ago and I'm driving home from the station. I am exhausted, bloated and generally not feeling well. I remember going around the lake near our home wondering if I should pull over and sleep because I didn't know if I'd make it. I told Bill and he said I had to see the doctor. Instead of calling my OB/GYN I decided to call Aleks' doctor, Dr. Spore. I had been in to take Aleks a few weeks before and commented to her that I wasn't feeling well. She looked at me and said you don't look well. So that day, after almost falling asleep driving home, I made the appointment. On top of being exhausted with stomach issues I was also depressed and not dealing with coming off of Zoloft well at all. (Side note: I went on Zoloft a few weeks after finding out something was wrong with Aleks because I simply couldn't function. It was wonderful, did the job it was supposed to but for me the side effects were causing a few other problems. ) Dr. Spore ran the full food sensitivities/allergy testing done, a depression panel, urine, spit, etc. I won't share all the other stuff, but what I did find out from the food testing shocked me. My IgG test showed that I had gluten intolerance and egg intolerance higher than my daughter's! The cure, take out ALL gluten.

Let me say this, it is one thing to remove gluten from a 3/4 year old's diet. It is completely different when you're a 38 year old Midwestern girl who has grown up on homemade breads, cookies, buns and all things gluten rich, including BEER! It wasn't easy, but I kept looking to my daughter and realizing that if she could do this I could do this. Thanks to my husband, I even found gluten-free beer that I like. It's now been about 6 weeks on my gluten free diet and I feel like a different person. I'm not exhausted and I'm not holding my stomach in pain or running to the bathroom. In fact I'm now so accutely aware of gluten in foods that if I have it I now experience what Aleks does and the 'spacey' feeling she gets in her head. It usually takes just a bite and I'll look at Bill and say this has gluten in it. Going gluten free has been amazing in my life. If any of this rings a bell with you, get tested. I know it's a huge life changing event, but to feel well and be a healthy mom is the best thing I could do for my daughter.

Melissa

One Year and a Million Memories & Lessons

2009-07-15T10:14:00.003-05:00

It is incredible to believe that we are now a year into learning that Aleks has autism and a year on the GFCF+ diet. I think back to a year ago and it seems hard to imagine my life without autism. I remember a woman telling me that I'd just joined a group that I never asked to join and one that I never would want to, but a wonderful group all the same. How very true that statement is today.

Here are a few things I have learned this past year.

1. No matter what our struggles are as parents, what our children go through is always harder. The difference is that they just don't know a life without autism.

2. You will feel like you are broke $$ from autism more than a few times, yet God finds a way to provide what you need.

3. You will find an inner strength that you never knew you possessed.

4. You will become your child's biggest advocate and that role will be challenged on a regular basis.

5. You will learn to celebrate the small victories because you know that they really aren't small at all.

6. Your marriage will feel the strains of having a child with a disability but you will also see unexpected growth.

7. You will feel an instant connection to other parents of children with autism.

8. You will be able to name your child's food allergies and identify them in any food/any ingredient within seconds.

9. You will be able to identify autism in other children within a few seconds.

10. You will realize just how hard special education teachers and therapists work and what special people they are. They will also become part of your family.

My thanks for all of the support we have received this past year. I wouldn't trade going back a year for anything and I am just so thankful to be where we are today. It has been one of the hardest years of my life, yet one of the most fulfilling. Thank you and God bless.

Melissa

My little mermaid...

2009-06-29T20:42:00.004-05:00

This past weekend I had the privilege of watching Aleks pretend to be a mermaid swimming in the lake...

Right before Memorial Day, Bill and I made the decision to buy a travel trailer. We're not campers, but we do love to get away with just our little family. Before Aleks 'got sick' we use to travel more often. Since moving to MN and Aleks being diagnosed with autism we haven't gotten away like we would like to. For our Disney trip in March I had to ship a box of her food and pack several pounds of her organic/nitrate free frozen meat in my suitcase. Then we had to get a hotel suite with a kitchen so that we could cook. Needless to say it is a lot of extra work and a lot of extra money. Hence, the travel trailer with 2 bedrooms, a bathroom and a great kitchen. This combined with her love of the outdoors has made camping a great decision for our family.

Now onto my little mermaid. Friday evening was absolutely beautiful here in MN. We were camping for just one night at a campground on a lake with a swim beach and a huge playground. Soon after we got there, we got Aleks in her bathing suit and headed on over to the beach. As soon as she saw the water and beach she was happy and running towards it. The beach was packed with other kids and families. The great thing is that now Aleks will run right up to any child and say 'hi' and introduce herself. One of the best memories is a very simple one. Aleks made a new friend at the beach. They played in the sand together and swam in the shallow water together. Bill and I sat holding hands in awe watching her sit in the lake, side by side with this little girl named Brianna. The two of them were in just a few inches of water, the sun was on their backs and they were just talking and laughing together. Then they took off in a crab like crawl in the water. I yelled for Aleks to be careful and not go too deep. To which she turned around and yelled, "It's okay Mommy, we're just pretending to be mermaids." I tear up as I write this for so many reasons, but the big ones are for new friends and pretend play. A concept so many autistic children struggle with and one she had no skills with just a year ago. Not the case today, today she is my little mermaid who makes new little mermaid friends.

Melissa

MN DAN! Doctor & Seminar in June

2009-06-01T09:54:00.005-05:00

I am asked constantly about Aleks, her health and what we think of her DAN! (Defeat Autism Now) doctor. I have said it before and I'll continue to say that Dr. Spore is an amazing part of the healing puzzle for Aleks. We found her before Jenny McCarthy listed her in her last couple of books and I am just so thankful to her for all that she has done.

If you are interested in hearing more about the biomedical therapies she offers and hearing her talk about the diet, HBOT and all that she offers you should plan on attending an upcoming seminar. The seminar is Saturday, June 13th from 9am-noon, it's only $25 dollars and it's in Woodbury, MN. Plus, it's open to anyone. Dr. Spore is doing it in partnership with Great Plains Labs , which is where all of Aleks' bloodwork & mine, have been done. You should also know that she is donating her time for this. That's just another reason I really like her!

Click here to learn more and sign up.

Melissa

Amazing Race & Amazing Healing!

2009-05-16T07:49:00.008-05:00

On May 2nd our family had the opportunity to be a part of the local TACA (Talk About Curing Autism) first ever Twin Cities 5K Run/Walk. I was asked to come out and emcee the opening ceremonies and do a couple of quick interviews. Bill was running the 5K and Aleks was just being a four year old little girl. The really cool thing is that she really was just being a four year old little girl. This picture is what happened when I set the mic down and Aleks came up behind me and just picked it up and started singing.

What you don't see or hear in this picture is the progress Aleks has made in the last year. A year ago we still didn't have our autism diagnosis. A year ago Aleks couldn't be in front of a large crowd. She couldn't have people singing 'Happy Birthday' to her, let alone a large crowd watching her sing and applauding her. A year ago there were no songs, no long sentences and no way she could have memorized two songs and sang both in their entirety. Her singing these songs was a miracle for us to watch. I'm sharing it because I also want to share hope. The diagnosis of autism is not the end. Healing and recovery look different in every child, but this is just a glimpse of what it has looked like in our family.

Blessings!

Melissa

Kindergarten Shots

2009-04-26T20:42:00.005-05:00

Having seen all the talk about the flu vaccine, the swine flu scare and such I feel the need to share a true story with you. I heard this story firsthand from the little boy's mother while at the grocery story last Fall. I think it is an important story to share if for no other reason than to make you think. For me, her story has made me think about every vaccine that every person considers getting.

Last Fall I was shopping at our local natural/organic grocery story when I met this amazing mom. I was in the baking aisle doing the usual of picking up boxes and reading labels to see what I could take home for Aleks. I noticed a mother with a little boy around 8 doing the same thing yet seeming really frustrated and lost. I asked her if I could help. She told me that she was just started the GFCF diet for her son and was overwhelmed. We started talking about the diet and I shared with her our success with it. She then asked about Aleks, her autism and doctor. I told her all about Dr. Spore and how much we loved her and believed in the biomedical therapies. I gave her one of our doctor's business cards and told her to think about calling. She then got teary eyed and told me what a rough few years it had been. What she told me next shocked me and I will never forget what she shared.

The mother told me that the little boy I saw with autism wasn't always autistic. In fact he was a typical child until one trip to the doctor right before kindergarten. She said she took him in for his Kindergarten shots and by the next morning he was gone. He had gotten all his shots for Kindergarten and in the process she lost her little boy. The happy go lucky, 'typical' little boy disappeared within 24 hours of receiving his vaccines. The mother desperately called their pediatrician to tell them something was wrong. They kept telling her that nothing was wrong and he was fine and just tired from the vaccines. She kept calling, for weeks. Same answer or lack of answers. No doctor would every tell her that her son had a vaccine injury. It was unheard of, a little boy becoming autistic at five. The mother told me that their doctor tried to convince them that he had been autistic before the shots and she just didn't realize it. As she told me, she was the mother of four and she would have KNOWN if he would have been autistic. I believe her.

The woman had no idea that I hosted a radio show for a living. She didn't know anything except for the fact that I was the mom of a little girl with autism who believes that there is hope. I don't know what has happened since last Fall. I do know that my doctor's assistant told me they got a phone call that afternoon from a mom who met a 'Melissa' in the grocery store and wanted to make an appointment. The woman was sitting in the grocery store parking lot when she called them. I love how God puts people in our paths for a reason.

Blessings-

Melissa

The Birthday Party

2009-04-24T19:42:00.009-05:00

It feels like this past month has been a whirlwind of activity. We got back from 'Spring Break' and dove into the usual school, therapy and Aleks 4th birthday! I kept going back and forth between a party with a lot of her school friends and something smaller. For an autistic child, birthdays can be very upsetting. For example; for Aleks' first two birthdays we had big pool (lived in Florida )parties with lots of friends. She loved the parties and loved the attention. Then a year ago it was all different. She wasn't making eye contact and ran screaming when we started to sing 'Happy Birthday'. A year ago she was hiding in a corner, screaming and holding her ears. I was in shock and totally confused. At this point we had no idea that it was autism and this can be typical behavior. Now fast forward a year and you can understand my birthday party dilemma.

I knew that she was doing exceptionally well in school and with her therapies. She had gone from one or two word answers to sentences and having conversations. She loved her friends at school and really wanted a party. Yet, could she handle it or would it be too much? It is amazing how God works everything out. Planning our Disney vacation was extensive and I just never got her school friends party done. Her birthday was only a week after we got back from Disney. A few days after we got back I started thinking about what she really wanted and I knew what to do. We have some neighbors/friends that we are close to. Aleks calls their 3 kids her 'brothers and sister.' When I thought of a party it just seemed perfect to have her 'MN family' for a family party. That is what we did and it was PERFECT. The amazing miracle is that she sat at the table, took in all the attention and loved having everyone sing Happy Birthday to her. I made a GFCFSFRFEFYF chocolate cake with fudge icing and it was also a huge hit. What an amazing day of miracles for us and for her.

Thank you Jesus.

Melissa

Visiting Disney World With Autism

2009-03-24T16:58:00.010-05:00

Going to Disney World with Aleks was amazing! It was her first real trip to Disney and Disney made it a pleasure. I had heard that Disney really takes extra care to help children and families with autism and they really do! This was our first family vacation since Aleks was diagnosed with autism and started her biomedical therapies and special diet. I have to say that I was nervous about how she would do with all the stimulation and just changes to her schedule. I was also nervous about what she would be able to eat and if the 'special pass' from Disney would really work.

We stayed in a one bedroom suite at Disney's Animal Kingdom Lodge. We originally had a studio suite (Queen bed with a small refrigerator and microwave and a pull-out couch) booked, but after getting there we soon realized that without having a separate bedroom she would freak out and it wouldn't work. She also was none to willing to sleep on a pull out couch. For those of you without an autism link, this is due to it being different which equals scary to a child with ASD. This is not about her being a diva! Despite the extra money, we knew that if we didn't fix the room issue it would add to her stress and ours. It turned out to be the best decision we could have made. The room looked out at the animals and was very quiet. That was a real blessing. The other blessing was that having the animals around calmed her. Also the room had a full kitchen which allowed us to make her breakfast every morning. If you didn't hear it on my show, I took 2 pounds of frozen bacon, 1 pound of frozen sausage, a bag of frozen pancakes and a bag of frozen muffins in my suitcase. This plus we shipped crackers, almond butter and strawberry jam to FL before we arrived!

We were at WDW for 3 nights, and went to the parks for two days. We spent the first day that we flew in at the AK Lodge pool and just hanging out at Animal Kingdom Lodge. We then took her to the Magic Kingdom for part of day 1, then the afternoon at the pool then went over to the Animal Kingdom and did one of their last safari rides. It was a perfect first day and not to overwhelming. For the second day we went to the MGM Studios. It was wonderful! We saw The Little Mermaid Show (heads up it's dark and Ursula is a little scary) and saw the live Playhouse Disney show. If your child watches Disney in the morning they will LOVE this!! The shows were great and she was just a regular kid seeing all her favorite characters. We also let her get some energy out at the 'Honey I Shrunk the Kids' play area. Great place to let them unwind. We ended the day at the hotel pool and just had a fabulous time.

Couple of things you may not know about Disney and how they really help families with autism. First, tell them that you need a quiet room and why. They will be more than willing to help. Second, make sure you get a 'Guest Assistance Card'. At the Magic Kingdom you go into City Hall (don't go to Guest Services outside the entrance of the park, instead go inside and go directly to City Hall) and tell them you have an autistic child and need to get a GAC. Make sure you have a letter from you doctor stating that your child has autism and could benefit from the card. The GAC allows you to bypass the long lines and really helped our daughter enjoy the trip. When you get to a ride, find the Disney cast member at the beginning of the lines and they'll tell you where to go. Next, if you're on a special diet Disney will help. All the restaurants (quick service and sit down) will accommodate you, just talk to the manager. At the Magic Kingdom we were able to get Aleks 'allergy fries' which were GFCF baked and not mixed with other food. At the AK we were able to get her a 100% ground beef hamburger and GFCF fries that were fried in a separate oil. The food service managers were wonderful!!

A big thank you to everyone at Disney for making an autistic little girl's Disney dreams come true. Thank you to Robert at the Animal Kingdom for helping us with our room. Thank you to Carol at the AK Mara Restaurant for being so kind, caring and accommodating. Thank you to all the Magic Kingdom cast members for their help and caring. Thank you too to Ron, our bus driver at the hotel who made sure Aleks was safe and having a good time. Also, our friends Rob and Jim who made the trip extra special. It may not seem like a lot to you all, but to us you made Disney possible for a little girl with a very big dream.

Blessings & Pixie Dust-

Melissa

P.S. Earplugs were a life saver and provided a little quieter and calmer experience for Aleks. Get the waterproof ones, put them in the morning and then you can leave them in all day even during swimming!

Potty Training at Last!! Hurray!!

2009-02-28T18:14:00.002-06:00

For any parent potty training is a challenge. For us, parents of ASD children, potty training can be downright difficult, hair pulling and just plain awful at times. Before we knew that Aleks was on the spectrum, we thought she would be potty trained sometime after her second birthday. Then came her third birthday and we thought for sure that this is it! Then came the autism diagnosis and we just prayed that potty training would eventually happen. We thought last August that we might be close. She went on the toilet, told us she had to go, had a great day wearing panties then kaput she was done with it. Seriously, done! She wanted nothing to do with going the bathroom and would actually freak out if we suggested it.

This past fall had its ups and downs with potty training. Some days she would go for her teachers at school. Other days she would have a wet Pull Up. We were sending her to school with panties and a Pull Up over them. It was suggested that this would help her to recognize when she was wet and would help avoid accidents by having the Pull-Up as a backup. The good news is that she would be so excited when she went at school and got a sticker for going. We were also doing the stickers, reading the 'potty' book and rewarding her with a sticker on her potty progress chart here at home. We also tried pictures to explain the process and were setting the timer as a reminder. It was a sloooow process.

Finally, last Sunday I had an epiphany. All of her teachers and therapists were telling us how smart she is. They were telling me that she understands and is capable of so much more than even we all know. So I decided that if this is true and I believe it is, then wearing a Pull Up was just giving her the excuse to go in her panties/Pull Up combo. So on Sunday, I told her no more Pull Ups and that she was going to wear panties today and go on the toilet. She still wasn't telling me when she had to go so I would set a small timer, put it on the coffee table and when it went off we would head to the bathroom. What I found out is that she can hold it a long time and is capable of being potty trained. In fact it's been a week now and we've had just a couple of accidents. She still isn't telling us when she has to go, but she also is willing to go on the toilet when she has to and understands the premise. She's going to school dry, coming home dry and using the toilet at school as well. Even today she went after her gym class at the gym!

Potty training is not something I ever thought I would openly talk about like this. It's also not something that I would have thought would be such a celebration and prayer laden activity. For some children it's just a right of passage, but for our daughter with autism it is another miracle and huge developmental accomplishment. It is huge in our world and in hers. I didn't know if we would be here by her 4th birthday (March 27th) but I thank God that we are. It just shows me that she is capable of so much and has come so far.

Blessings-

Melissa

To ABA or HBOT or Not?

2009-02-18T20:09:00.002-06:00

Are we missing it by not having Aleks in ABA therapy? Should we also be trying HBOT?

It has been several months since we found out that Aleks has autism. We jumped into the diet and supplements and are thrilled with the results! We also dove into working with our DAN! doctor, ST and OT plus have Aleks in a special preschool with an amazing team of teachers. What I am wondering now, is are we doing enough? Aleks will be 4 in a month and we are questioning ABA and HBOT because it keeps coming up. I believe in God's bread crumbs and am just wondering if these are part of our crumbs to follow and what we should be doing about it.

I talked to one former ABA teacher who said that it's not for everyone and who was not a fan of the 40 hours a week. Honestly, I am not willing to cancel Aleks' school, OT & ST to get her into the 40 hours of ABA that some say are recommended. I am willing to do half of that in addition to everything else, but my gut says for her the 40 hours isn't right. I've been surprised at the few outspoken parents who tell me that it's not worth it if I don't do the 40 hours and that I am cheating her by not doing ABA. We honestly couldn't have handled it before now. Even now and with TEFRA here in MN the cost for us will be outrageous. We are willing to do all we can for her, but is ABA the right fit? How do we know if it's right for her? Also, we have the opportunity to try HBOT. Our DAN! doctor in Stillwater is one of the few around here who offers the oxygen chamber. We are still researching HBOT at this time to try and figure it out as well.

In the short time that we've been in this journey I feel like we've come a long way. The problem is that it is a journey and we have to much further to go. If you have any suggestions, thoughts or just insight please post a comment and let me know. Thank you!

Blessings-

Melissa

Follow the Bread Crumbs

2009-02-15T15:20:00.002-06:00

I just finished working my radio station's annual radiothon to benefit children here in the Twin Cities. We raise money for two very special organizations that help children with cancer and disabilities. As I was interviewing different parents I was reminded of one very special mother that I had met last year. Her name is Theresa Lao. She had two little boys with a condition that caused their skin to shed off of their bodies. When I met her there was no cure for this condition known as EB. Yet, she continued fighting and petitioning for her sons and finally found Dr. Waggoner at the U of M Fairview Children's Hospital who was willing to try to find a cure. She moved her two sons out to MN from NJ and lived in a hotel so that they could be part of a medical trial that just might work.

One of my questions to her was this, "How did you know the next 'right' thing to do for your children...How did you know what your next step would be?" Her answer was simple, "God always gives me the bread crumbs and I just have to follow them." She was referring to the Hansel and Gretel story and it made a visual impression on me that stuck. I met her in the Fall of '07 not knowing how my life would change that following Spring. That Spring I would find out that my daughter had autism. I have so often thought of Theresa and I have taken the 'breadcrumbs' piece of advice to heart. Whenever I wonder if I am doing all that I can for Aleks and question what I should be doing next, I think of the breadcrumbs. I have found that God truly does give us breadcrumbs of knowledge. He'll use someone else to mention something that is working for them, I'll then get an email about it or have a second person mention it and then it hits me that this is a breadcrumb moment. I have found that He'll keep giving me the breadcrumbs, but that it is my job to follow up on them. It is also my job as the mom of a child with ASD to be aware and open to wherever God is leading us.

My advice to parents struggling with the question of 'What next?' is this, look for the breadcrumbs. Just be prepared that they may not be where you thought they would be and they may not be what you expected at all. You may also be surprised at who God uses to show you a breadcrumb.

Blessings-

Melissa

The Debate on BIomedical Including the GFCF Diet

2009-01-27T19:53:00.004-06:00

There seems to be an ongoing debate between parents of autistic children, doctors and even friends about the GFCF diet and other biomedical treatments. I have met mothers and fathers who are open to trying anything, parents who are scared and overwhelmed about making any kind of a change and other parents whose doctors have told them that it won't work. To those doctors, I say shame on you. Shame on you for destroying the chance that a child with autism could get better and shame on you for destroying the hope of a parent. I know my own personal convictions on biomedical. I've been to these 'doctors' and heard their lack of belief. These are also the same doctors who told me that nothing was wrong with my daughter and that vaccines are not harmful. Here is my response, "There is hope and healing!". For us, the diet, supplementation, therapies and schooling have been her miracle treatment. In Dr. Bock's book he talks about developing a healing program. This is ours and thanks to it we have a totally different daughter then we did a year ago.

The problem is not in whether the diet works, but in the support we give one another. Not just between parents of autistic children who do and don't practice the diet but also between spouses. One of the things I am so grateful for is that my husband had his doubts, but was willing to try. Before we had read all the books and were convinced in the science behind biomedical, we knew we had to try. The question became, what is the worst that could happen? She'd try different foods, get good quality supplements and we'd be out a little money. In the long run it seemed like a small price to pay for a ray of hope and the chance at recovery. Today I am so grateful that we tried.

I have to point out that the diet, supplementation and therapies aren't the answer for everyone. For some children it won't have the same results that we have had. For some the healing will be more moderate, but for some it will be truly a miracle. The best part is that it won't hurt your child. Your child won't get sick from taking out the gluten or dairy. They won' t get worse. The great news, they just might get better. Isn't that worth the chance?

Supplements - Part of the Healing Equation

2009-01-04T17:49:00.006-06:00

I am often asked about what supplements Aleks is taking and where I came up with the list. Before I put the list of her supplements up, let me first state again that I am NOT a doctor. I am working with Dr. S (DAN! Doctor) , have done my own research and have also had blood/stool/urine and hair analysis done. This is the list that works best for Aleks, but it is not a one size fits all supplement list. I strongly recommend Dr. Jaquelyn McCandless book, Children With Starving Brains. It explains the supplementation and how it helps to heal the body. I used the results of Aleks' tests, Dr. S and p. 116-117 to come up with her supplementation program. Dr. S has been key in helping with the dosages, supplements and the why.

Please note that all supplements are mixed in either organic apple juice or Dari-Free. I also started using an additional flavoring with the apple juice to hide the supplements flavors. I use either Kirkman Labs Strawberry Flavoring or Stevia Valenia Orange Flavoring (Fresh & Natural Grocery Store).
**Probiotics & Digestive Enzymes should NOT be taken at the same time.

Super Nu Thera - Hypoallerenic Capsules -- 1 capsule 2 x day in juice

Nordic Naturals Children's DHA strawberry flavor - 1/2 t. 2 x day (Whole Foods or Fresh & Natural)

L-Carnitine - 1000 mg day -1/2 t. 1x day (Dr. S office in Stillwater, MN)

Unbuffered Vitamin C - Unflavored - Hypoallergenic - 1/4 t.(1100mg) 2 x day (Kirkman Labs)

Zinc- Hypo-allergenic - 60mg - 20/40 breakdown in AM & PM juice (Kirkman Labs)

Calcium - Hypoallergenic - 1000mg - 1/4 t. -Mix with lunch Dari-Free & Probiotic (Kirkman Labs)
*Vitamin D - 175mg - 1x day as part of the Calcium powder

CoQ10 - Hypoallergenic - 50 mg. day - 1 -25mg capsule - 2x day (Kirkman Labs)

Probiotics - 1 capsule - 2x day in DariFree - Metagenics - Ultra Flora Plus DF Capsules - (Dr. S office)

Faith, Hope & Healing-

Melissa

Manic Since Being Sick

2008-12-30T18:00:00.003-06:00

I am writing this blog and am totally frustrated at the moment. Aleks was sick for 3+ weeks, had 3 different antibiotics because some weren't working and then 2 rounds on 1 antibiotic. We know that in the healing of her leaky gut that antibiotics are not always good for the healing. What we didn't realize is that in healing her massive double ear infection and temperature of 104 we would see such regression in her autistic behavior. To say it has been rough is an understatement.
While on antibiotics, Aleks started walking on her toes again, using more 'baby' words and just overall irritated and manic. We talked with her ST and learned that there is a typical regression of 2-3 weeks after an illness and then she will be back to her post diet, therapy self. It has been soo frustrating to watch her suffer again and to experience the manic, controlling behavior again. My biggest fear at the moment is that this behavior will stay and all the progress we made will be gone. As I just wrote that, Aleks came up and gave me a kiss and told me that she loves me. Thank you God. I think that is His way of reminding me that although we've regressed we aren't back to where we started.

Faith, Hope & HEALING-
xo
Melissa

My Daughter Came Alive During Her High Fever

2008-12-07T11:37:00.008-06:00

The other night my daughter's fever spiked to 104.7 after being diagnosed with an ear infection. We gave her a fever reducer, got her fever down to 102.5 but were still worried. Yet, the 102+ fever brought about something amazing. As Aleks crawled in bed with us at 2am, she started chatting away. Although Aleks' speech has been improving with speech therapy, she still struggles with her vocabulary and comprehension. That night at 2am she wasn't struggling. In fact it felt like she had just awoken from a coma and had so much to tell us. She was talking about school, her books, her babysitters dog and what was it's name. Her pronoun use was correct and words she has never said before were flying out of her mouth. Both Bill and I turned on the lights and just watched her talk. She couldn't say enough and seemed to have so much to tell us. Bill looked at me at one point and said, "What is going on?". That's when I remembered in my research that I had read about a fever phenomenon.

The sad part of this is that once the fever was back to normal so was my little girl's autism. It almost seems like it was a dream, but then it happened again last night. Her fever spiked to 104.7 and she was lethargic and miserable. The fever got down to 102.4 and she started chatting again. My friend Sandy came over to check on her after I called her in a panic and witnessed it too. Aleks was affectionate, chatting and overall just happy. This morning that little girl is gone. Her fever left, her sickness (ear infection and a viral infection) is still here and the chatty happy little girl is also gone. I told my husband that it seems like a cruel joke. I love his answer, that maybe it is a glimpse of things to come. That is what I am now holding onto. What I have learned is that my little girl is still trapped inside and wants to come out. This has renewed all my efforts to find her healing formula and get her out of the demon grips of autism.

Faith, Hope & Healing~
Melissa

Help For a 'New' Mom on the Autism Journey

2008-12-04T18:26:00.001-06:00

Since announcing on the radio that Aleks has autism, I have had the privlege of helping along a few moms who are in the beginning of their own autism journey. One of my new moms just received her son's food sensitivity testing results back and is feeling so overwhlemed. Here is part of the email I sent her. Hopefully the information will be helpful to you too. I've taken out some of the personal information, but felt the rest was okay to leave in.

Faith, Hope & Healing~
Melissa

***************************************

Hi! You are not alone. I really feel for you. I totally understand how overwhelming it is when you first get the test results back. I cried all the way home from Whole Foods. What exactly is your child sensitive to? Give me all the foods and let me see what suggestions I can come up with for you. If not chicken or turkey nuggets, I've also made homemade fish sticks for Aleks out of tilapia. It's easy and yummy for her. By the way, Aleks was a super picky eater before the diet. She was down to just a few foods, but after removing all her sensitive foods it got better. All of a sudden she started eating her veggies again! She also was more willing to try new foods! Most of the foods she was eating were the ones that she was sensitive to. Hence her body being addicted to them.

It sounds like your child is still in the 'food fog' that so many of our kids are. When we took out the chicken, corn, rice, soy in addition to gluten and casein is when Aleks had her severe withdrawals. For 3 weeks she was up crying at night and just plain miserable. Then it stopped and it has gradually gotten better. Is your child in Speech Therapy? If not that has been huge for Aleks. We love our ST if you need the name of someone. She has experience with autism and really supports the GFCF diet. Before the diet, Aleks attention span was seconds to a few minutes max. 3 weeks after the starting the diet she was up to 20 minutes for being able to sit still and concentrate. The speech has come along from there. She has never been non-verbal, but has always struggled with just a few words. Now, six months later she is talking in short sentences. The other key element in her healing has been supplementation. I buy many of
mine from Kirkman Labs. I know Dr. Spore will soon start carrying them. Their Super Nu Thera was developed for autistic children and is a high dose of Vit. Bs and magnesium. We also found that Nordic Naturals 'Children's DHA' really has helped. During the beginning of the diet she did 1 t. 2x day. We mixed it in with her apple juice, along with the Super Nu Thera and a few others. The DHA helps calm the brain down. They're finding that so many of our kids have swollen brains. I have Aleks on a strict supplement schedule. I got it from Dr. McCandless's book recommendations and Dr. Spore.

As far as your child's speech, a ST will most likely be able to help you figure out what is going on. We learned that besides it being a speech problem that Aleks wasn't able to comprehend what we were saying. Her cognitive just wasn't there. ST has helped. Susan, our ST, also really helped by giving us tips on how to talk to her which helped. It is so cool to see once things come together. One of the things we learned is to talk as slowly and simply as possible. Fewer words, simple commands and use as many visuals as possible. It won't always be that way, but it will help his brain catch up.

I hope some of this helps. You've been on my mind a lot lately. Rough couple of days with Aleks being sick. It is amazing how the autism stims always get worse during illness.

You're in my thoughts & prayers. Hang in there and know you're not alone.

Blessings-

Melissa

You're Blessed to be a 'Special Mother'

2008-12-01T17:25:00.004-06:00

I love it when I receive a story or a poem that makes me smile, cry and thank Jesus all at the same time. I did just that when I read the following poem from Erma Bombeck.

***********

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

GFCF Diet and Beyond

2008-11-09T20:08:00.011-06:00

When I first read Jenny McCarthy's book, Louder Than Words, I was fascinated by her experiences with the GFCF diet. She had put her son on the diet and seen remarkable results. Years after first trying this, she said that she still received the most questions about how the diet worked and how she implemented it. I have to admit that the GFCF diet seemed overwhelming when I first heard about it. If you're new to autism and biomedical therapies, GFCF diet stands for Gluten Free Casein Free diet. This means a diet that is 100% free of all gluten, which is the protein found in wheat, barley, rye and oats. Casein is the dairy protein found in almost all of your dairy products. To do a clean GFCF diet, it also requires that you not only eat 100% gluten and dairy free but also that you don't come into contact with gluten or dairy on your hands. I have found the biggest culprit is Play-Doh which has wheat in it. The TACA website has great information about the diet and common school products that need to be avoided because of gluten.

We started Aleks on the GFCF diet this past July. Before we started the GFCF diet, I first read Lisa Lewis' books, Special Diets for Special Kids 1 & 2. The two books give you the why and how the diet can work, plus the medical research behind it. I am constantly researching and reading everything I can about the GFCF diet and really found her books, which double as a cookbook, to be wonderful. I learned about the leaky gut syndrome and how many autistic kids have it and how it impacts their ability to digest gluten and casein. The easiest way to explain it is that their guts don't properly digest gluten and casein because of the weakened condition of the gut and how the proteins then sneak out into the blood and start attacking the brain. This is why the brain and all that goes with it are affected and how the diet can make a difference. The gluten and casein have an addictive effect on the brain and usually an autistic child with GI problems and food sensitivities is addicted to and eating only the food that is bad for their body. It's like a drug addict whose body tells them that they need the drug when in fact it is toxic and making them sick.

For Aleks, before her autism took hold of her, she was a great eater. She loved her veggies, fruit, grilled meats and always drank her milk. She wasn't picky and we used to joke that we wished we ate half as well as she did. We started the diet in July and the little girl eating at the table that last day before the GFCF switch only would eat a handful of foods. Her diet was down to peanut butter, grape jelly, whole milk, bread, grapes, cheese, chicken nuggets, french fries, an occasional vanilla milkshake and lots of ketchup. That is all she would eat and all she ever wanted. Veggies were 100% gone and she was unwilling to try anything new. She was so regimented about her diet that she would scream and act up if she didn't get these foods exactly how she wanted them. One of my worst and last memories before the diet happened at McDonalds. We were phasing out the dairy and allowed her to still eat chicken nuggets, french fries and ketchup. She had gotten used to eating the ketchup out of those little white paper cups that you would pump the ketchup into at McDonald's. McDonald's was her reward for a good session of Speech Therapy. See...I was learning too! Well, on the way back from our vacation, we stopped into McDonald's but had to eat on the road so all we received were the packets of ketchup. Aleks lost her mind in the car. She started kicking and screaming and dumped her entire lunch on the floor of the car when he saw that the ketchup was in a packet. She was almost uncontrollable. Fries, chicken nuggets and packets of ketchup were flying and I was so angry at McDonald's! I knew that this wasn't her, I knew that this was autism having a fit in our backseat. Despite knowing this, it didn't ease the sadness I felt watching her cry and shake in her little car seat. It was the moment that I knew that no matter how hard the diet was, it had to be better than this. I am so glad that I had this moment, because it kept me going on the road ahead.

Before the McDonald's/vacation episode, the day we had actually left to go up North, we had been to see her DAN doctor and get her tests done. It was a lot of work to collect urine samples out of a non-potty trained child, get a stool sample and hold her down to have blood drawn. Dr. Spore told us that she wanted the tests taken BEFORE we started the diet because she wanted to see what the food was doing to Aleks' system. These tests, plus the hair mineral analysis were done and sent off. We then started gradually taking her off dairy by mixing some Vance's Dari-Free in with her milk. Every day we would increase the Dari-Free and decrease the milk. We also cut out cheese and were checking labels for anything dairy/casein related. Let me just say that casein and gluten seemed to be in everything! After a week she was diary free. We then took out the gluten. We actually planned on doing it gradually, but ended up doing it in just a day. She was now on the GFCF diet. I went to Whole Foods and was pleasantly surprised at how many GFCF foods were available. Most were made with corn and rice flour which was fine on the diet. I didn't allow her to have soy because I had read that the soy protein make up was so similar to dairy that a lot of kids couldn't handle it. We were on this diet for about a month. We noticed the tantrums were lessening, her eye contact was increasing and her attention span was increasingly quickly. Her speech therapist told us after 3 weeks that she felt like she was working with a different little girl. Her attention per toy at ST went from 30 seconds to 20 minutes! This in just three weeks! She also listened better and seemed to be more present. This was wonderful, but not the end of the diet for us. I was making her homemade chicken nuggets, she was eating a lot of fruit, corn or rice pasta and still drinking lots of Dari-Free milk. The shocker for me came next when her IgG & IgE test results came back.

For autistic children, the IgG and IgE test results show what foods their blood reacts to. An IgE food is a severe sensitivity. IgG foods fall into categories from severe to less severe but all need to be avoided for the body to heal. That by the way is the purpose of the diet. To heal the body, by stopping the food poisoning and allowing the brain to heal. As it is healing and the opiate like foods are removed it becomes easier for the child to learn. I love this explanation that I heard from another doctor. For those who don't believe in the brain/gut connection, think of this. When you have too much alcohol to drink think about not only how your body feels, but how your brain feels and reacts. Hence the gut/brain connection. For Aleks, who has a leaky gut, the food wasn't breaking down in her gut, was leaking into her blood and attacking her brain. I knew after reading that, that we had to take out all toxic foods.

I was just leaving the radio station when I got a text from Bill. He knew I was going to WF and wanted to tell me that the test results were in. It started with yes, Gluten, Dairy and Soy were all big offenders. Then he said that I also needed to avoid rice, corn, yeast and peanuts and anything with eggs in the foods that I got her. What?! I called him and he said that in short she can't have those foods either. I wasn't overwhelmed until AFTER I left Whole Foods. All GFCF foods have rice flour, corn flour or soy in the. There were no breads, crackers, cookies, or pastas that didn't have something in them that she couldn't have. I spent an hour and a half in WF and left sobbing in my car. How could what seemed possible with the GFCF diet now seem so impossible. There was nothing that she could eat, at least that's how I felt. For two days I wasn't sure what she could eat. We met with Dr. S and found out the complete list and how much more extensive it really was. Aleks was now unable to eat gluten, casein, soy, rice, corn, eggs, yeast, peanuts, grapes, chicken, mustard (it's hidden in a lot!) and anything with coconut.O These were all high IgG foods and oats was her biggest offender getting the IgE marking. Her favorite foods, chicken nuggets, PB&J(grape), crackers, bread. We then took out everything else out of her diet and my journey on the GFCFSFRFCFYFEF diet began.

When we removed the corn, rice, yeast, eggs, peanut butter, grapes, etc., is when she had her withdrawals. The next three weeks were awful!! The withdrawals from gluten and dairy were minimal. In fact it was a pleasant change. The withdrawals from the rest of the list were a nightmare!! She cried all the time, was up constantly through the night, couldn't sit still, couldn't concentrate, was a terror at therapies and was just miserable. After two weeks I felt like I was going to lose my mind. Our Dr. told us that she had never seen withdrawals go longer than 4 weeks and to hang in there. We just kept hanging on by a thread. Finally, after three weeks the withdrawals stopped. She started sleeping through the night, eating the foods that I was now making 100% at home from scratch and seemed to be becoming her post GFCF self again. The withdrawals were done, but we did find out in the months ahead just how sensitive her body is to the foods and how even a little on her hands can cause the autistic stims to come back. More on that later...

The Start of Our Autism Journey

2008-10-30T12:19:00.008-05:00

We didn't know that Aleks was autistic for a long time . In fact, I was shocked the day that my mom said the word 'autistic' for the first time. It was just this past February, we had moved to MN from FL and were living in a small two bedroom apartment with our almost 3 year old daughter and our dog. My grandfather had just passed away and my mom was out visiting the weekend after his funeral. I had been sick in bed with the flu and she said that she needed to talk with us. That is when she said that she thought something was wrong with Aleks. We had wondered about her speech for awhile and I thought that is where it was going. It wasn't. When I pushed her to tell me what she thought was wrong, she said I think Aleks has autism. She burst into tears and so did I. Not feeling well and feeling emotionally overwhelmed with grief, I crawled back into my bed and cried my heart out. How could my miracle baby have something wrong with her. We had been through so much as a family, why this? Why now? I was angry with my mom, angry with God and internally fighting that something was wrong with my baby girl.

I stayed in the grieving mode for awhile. I would come out for short breaths of air, look around on the Internet only to turn it off and try and forget about it. My relationship with my mom was strained, I was angry and Aleks' behavior was getting worse. In the next month, we sold our house, bought a new house, traveled to FL to pack up all our things and I knew it was time for me to act. I stopped feeling sorry for myself and her and decided that I would do whatever it was to fix her. It was at this time that I went out and bought Jenny McCarthy's book, Louder Than Words. To say it was life changing is an understatement. All of a sudden my fear was replaced with an unquenchable desire for knowledge. I read her book in just 2 days and then moved onto more books about the GFCF diet, biomedical interventions and what local doctors could help us. Trying to find a doctor was to be my first BIG hurdle.

Doing a morning show and getting up at 3:30am takes it toll on your body. My day would consist of going in at 4:30 for the show, meetings, production and then home around 11:30 or noon. From there I would kiss my daughter and husband and dive onto the Internet. Google became my best friend and I spent hours and days researching and filling my brain with anything and everything autism related. I also started calling local doctors and hospitals for an appointment to get Aleks in. She still wasn't diagnosed and without a diagnosis no one was willing to help me. By this time I had come to the realization that my daughter most likely was autistic. I also became so grateful for my mom's courage in telling me. I have since learned that it is quite often other family members who notice autism before the parents. It's a burden on the family member who breaks the ice and brings it up, but it is key in beginning the healing.

All the little things started adding up. Her speech wasn't improving and actually had gotten worse. I remember at her 18 month and two year visit telling the doctor and nurse that I think she has lost some of her vocabulary. I was told that most likely she hadn't and since she had reached all her other developmental milestones that they were sure she was fine. I kept telling them that I was nervous, something just didn't seem right with her speech. Their answer, let's get a speech therapist evaluation. That happened at 2 1/2 and was a disaster! Aleks wouldn't sit, wouldn't cooperate and seemed lost with the pictures that the therapist was showing her. We were upset and told that yes, she would most likely need therapy. Still, no word of anything more serious. So, jumping forward she is now 3 and we're living in MN. Her speech is still a problem and she started becoming a different child than my sweet, even tempered baby girl. She hated strangers, wouldn't make eye contact, walked on her tip toes and became emphatic about rituals. At 18 months she loved her veggies. At 3 she wouldn't eat any...not one. The only foods she liked were chicken nuggets, peanut butter, grape jelly, whole milk, grapes and lots and lots of ketchup. All of this would eventually make sense once we met her DAN! (Defeat Autism Now)doctor. That will be another blog.

Finally, after waiting for months we got her into a local hospital for an evaluation by a leading developmental pediatrician. This took 3-4 months and we got in because I called almost every day and asked if there were any cancellations. Finally, one day it happened. Someone cancelled and our September appointment was now July. Mind you it was now April and July seemed like a miracle. At this time I was reading all that I could about autism and doing hours of research online every day. We had met with her new pediatrician in MN and was told that yes, she has some autistic characteristics but that she couldn't diagnose her. I've come to learn that most pediatricians don't diagnose autism. Whether they can't or don't want to is a matter of debate. Our MN pediatrician at least listened and pointed us in the right direction. She may not have the answers but she didn't brush it under the rug. She encouraged us to keep digging and make appointments at the local children's hospitals. I did but it took several months to get Aleks into just one doctor. That was the developmental pediatrician that I mentioned. Finally the big day in July was here. Appointment day and I foolishly thought that I would come home from the hospital with some answers. Instead, after filling out almost five hundred questions (this was a prerequisite to being able to just make the appointment) and waiting several months to get in, we were left with, yes she has the symptoms of autism but we need a MRI before we can say conclusively.

In the meantime, I thank the Lord that I had been diligently searching for a DAN! doctor. All I knew is that I wanted to make sure I had a back up plan should the hospital doc not work out. Thank goodness I did. The problem was the first DAN! doctor I called didn't have an availability until October. I took the appointment but kept searching. It was this search that changed Aleks life for the better. It was this search that led us to Dr. S, our current DAN! doctor. This is where everything started coming together. Dr. S believed me when I told her that Aleks changed after her vaccines. She encouraged us to follow our gut and not have the MRI done. As we later found out, sedating Aleks would have put poison in her already compromised immune system could have spiraled her even further downward. Dr. S understood exactly what was going on and never waivered in her belief that Aleks would get better. Also at this time we contacted our school district and by the grace of God got Aleks in for testing before they broke for the summer. Our DAN! doctor and school district plus all that we had learned about biomedical was the beginning of pulling Aleks through the window of healing. This is where the story of joy, triumph and tears of joy come in. This 'window' is also where we still live in our autism journey.