Working On My Cookbook

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

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.

xo

Lessons from the Summer...

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.

xo

Melissa

Kindergarten is Right Around the Corner...Chhaannges

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.

xo

Melissa

Our Autism Story Hits TC Television

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-

xo

Melissa

World Autism Awareness Day-Two Years in Review

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?

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

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.

xo

Melissa