A Move and Changes are Ahead...

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.

xo

Melissa

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

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.

xo

Kids Can Be So Darn Mean!!

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

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

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

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."

xo

Getting 'Glutened'...Seriously annoying!

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.

xo

HBOT Day 4

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.

xo

Melissa

HBOT...DAY 2 & 3

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...

xo

** 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...

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.

xo

Melissa

We're Going HBOT Baby!

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

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

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!

xo

Melissa