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

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