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We’re wrapping up Autism Awareness Month in a big way by celebrating each of the participants over the last two years in this video.   Thank you for telling your story.

Until next year- my best,
Carrie

You can imagine the joy in my eyes when I saw Adam.  He was friendly. He was devilishly handsome. He had a great grin and yes, he was wearing a lavender button down shirt and striped tie!  Despite his earlier thought of wearing his full suit, he was looking better than ever and ready for his photo session.   Adam showed me around his room for a bit and then we choose to go outdoors since the snowflakes were falling so sweetly.  (This was back when we still enjoyed the sight of snowflakes…)  Not so sweet was the cold stare that his fluffy kitty cat was giving me while I interacted with her boy.  Sure was purdy though…

Adam’s Story

Adam was a typical baby boy, full of life and energy. Around age one, we started to notice differences in his development, and with his behavior around age three, and at that point, we were concerned. I will never forget the day when I was completely honest with my doctor about my observations that my baby boy was not developing like the other kids. He was then diagnosed with ADHD, Expressive Language Disorder, Anxiety, and Attachment Disorder. We started occupational therapy and medication at that time, pushing through pre-school, just trying to make it to kindergarten, where we fought with tears to get an IEP in place, before he walked in on his first day.

Adam was well liked by many, but preferred to isolate himself from his peers. He continued to struggle behaviorally, and with learning abilities for a few years. I spent many days in the school trying to figure out what was going on so that I could help him. It had been brought to my attention, a few times, that Adam might have Autism. After waiting six months, he was assessed and finally given two more diagnoses: Dyslexia and PDD-NOS. I now finally had an explanation for his emotional outbursts, his lack of verbal skills, and his lack of awareness of his surroundings, and his lack of concern for safety for himself and others. It was a hard reality to face in that moment, but through time I was able to realize that we had been dealing with all of these issues already, now they just had a name.

We continue every day to fight through this life of judgment, with the help of wonderful teachers and a great therapist, no matter how exhausted we are. All I have to do is take one look at my sweet, precious baby boy, Adam, and know that everything we do is continuously worth it. He never ceases to amaze me. He is a eight year-old boy who continues to grow and improve and has already surpassed his doctor’s expectations. We were told he might not be able to play sports, but he plays a lot of them, and loves it! He is a loving child and we are blessed to have him in our lives. His best friends are his older sister, Pryde, and kitty, Nani. He has taught us not to take life for granted and to appreciate the little things.

The song, “Home”, by Phillip Phillips is our families’ theme song. We will sing it at the top of our lungs wherever we are, because we know as we go through life with struggles, we will never go through them without each other.

‘Hold on, to me as we go
As we roll down this unfamiliar road.
And although this wave is stringing us along
Just know you’re not alone.
Cause I’m going to make this place your home.’

Adam’s mother, Annie

Following this session, I was in pain.  Literally, my cheeks (facial muscles, I should clarify) ached. My buccinator muscles had been in the hugest smile position for an hour straight from these two characters that I needed to do some “ooh, eeeee” exercises on my drive home.  Individually, the boys were charming, kind, courteous, interesting.  Together, they were just plain endearing and extremely witty.  I hope you can see what I mean in the images below.

Luke & Jack’s Story

I think every parent of a child with autism can remember the exact details of the day their child was diagnosed. For us, it was July 31, 2008, the day our younger son Luke was diagnosed with autism, and also the day our normal lives ended and life with autism began. A year prior, our older son Jack had been diagnosed with sensory processing disorder, also an autism spectrum disorder. It would be several years later and lots of advocating on my behalf before Jack was also diagnosed with Asperger’s syndrome, a milder form of autism.

To talk about our autism journey, it’s hard not to talk about both boys simultaneously. Although Luke is more affected by autism than his brother, it’s a journey we’ve taken together as a family, and Jack has been an important part of Luke’s development, his best friend, peer model, and primary assistant on his road to recovery.

After Luke’s diagnosis, we jumped headlong into providing behavioral therapies. At the time, we were traumatized to find that insurance would not cover any of the therapies Luke needed, so we applied for Medical Assistance and joined multiple waiting lists for therapies that were years’ long. However, we also realized how lucky we were to live in Dane County, Wisconsin, where access to services was better than other parts of the country. We were fortunate that the following year, the Wisconsin Autism Mandate was passed and finally, families in Wisconsin could access the much-needed services our children needed and deserved through insurance coverage of intensive autism therapy, speech therapy and occupational therapy.

While autism is primarily thought of as a communication disorder, there are other associated issues that many people with the disorder experience. Luke has considerable gross and fine motor delays, has coordination problems, vision problems, sensory processing dysfunction, gastrointestinal problems, and considerable food intolerances, in addition to other medical issues. Jack does too, but to a lesser extent. Managing Luke and Jack’s therapy, dietary, and school needs is a full-time job in itself.

In the past five years, the boys have received services form multiple providers, including: Birth to Three, Common Threads Family Resource Center, Wisconsin Early Autism Project, Integrated Development Services, Children’s Therapy Network, Meriter Rehabilitation Services, New Horizons Vision Therapy Center, Svetlana Masgutova Educational Institute (Masgutova Neurosensorimotor Reflex Integration Therapy), and Wisconsin Integrative Hyperbaric Center. I also joined a support group called Talk About Curing Autism (TACA) when they began a Wisconsin Chapter in 2008. I’ve been the co-coordinator of our chapter for the last two years now. We have so many amazing people in our lives as a result of autism – whether it’s the incredibly strong autism Moms and Dads, the therapists and teachers in the McFarland School District, or the many wonderful service providers – I am thankful for the impact they’ve had on our lives.

Autism can be a rough road, with many ups and downs. We will often see improvements, followed by regression. An oft-quoted phrase is “remember this is a marathon, not a sprint,” inferring that in order to survive, you need to pace yourself. Boy, is that true. We have tried many different things, with varying success. At times I am full of energy and able to manage the demanding schedule and other times I feel like it’s tough keeping my head above water. It’s really important to reach out and ask for help at times like these. Autism can also be expensive. While we are thankful for the mandate, many therapies that are really helpful – like hyperbaric oxygen therapy – are not covered. Going on a gluten free, casein free, and soy free diet has been tremendously successful, but not without a great cost. I hate to think how much I’ve spent on food for the last few years.

We are almost at the end of four years of intensive autism therapy in for Luke. It has made a huge difference for him, but it’s not the end. He will require therapy for many years to come. We are hopeful that with enough help, he will be able to live an independent life. He’s lucky to have a brother in Jack. The boys are best friends and do everything together, not just because they’re brothers, but because they really enjoy playing together. Jack is going from strength to strength and hopefully will outgrow his diagnosis with enough help.

While both boys are on the autism spectrum, we never think of them as “autistic.” Instead, we think of them as funny, artistic, musical, smart, and clever. Luke has a special interest in commercial airlines and Jack loves cartooning and animation. We think the sky’s the limit for our boys. We love them to bits and know that the only way is up.

Kate and her TACA friends are raising money so that their chapter can continue to do all the important work it needs to do.  Click here to learn more about TACA and donate if you’d like.

Liam and Koen are a year apart in age.  These brothers are both diagnosed on the autism spectrum but are examples of how very different autism can be.  Both boys are impressing their teams of educators by defying expectations and obstacles.   I have no doubt this is in part due to their amazingly supportive and positive parents. It was a pleasure to meet this family and get a glimpse into the world that is their reality.   “Our lives with them are one big party- no pity invited!” – Liam & Koen’s Mom and Dad

Liam’s Story

Liam likes to think BIG- building Legos, drawing and swinging like a monkey.
An active second grader, Liam has big plans for his day and his life. He excels in the classroom and on the playground, making friends and having fun. His biggest challenges come when his plans, which can be hard for him to articulate, don’t mesh with mom and dad’s plans. So we work together to keep our family schedule written out so we can all follow the plan.
As parents we have so many plans for our children, and at times it can feel like those have been taken away. Liam and his brother teach us everyday that they have their own plans, maybe different from what we envisioned, but big and beautiful none the less.

The Autism Self Advocacy Network is an incredible resource for Autistics, parents of Autistics and those who love and support them. All Autistics have hopes and dreams, plans for their own lives, and their lives are best lived when we respect and work together to support those dreams.

Koen’s Story
Koen lives in the moment, little or big, good or bad.
He is intensely Autistic, or “high octane” as we call it. Being who he is brings him great joy, and can cause extreme distress. As a mom it is painful to see your child struggle, even hurt himself and others in an attempt to make us understand what he himself does not.   And yet he is an amazingly smart boy, loving and cuddly, and during happy moments is a joy to be with. He looks at the world around him in a completely different way and I have learned so much about life and myself just by being in the moment with him.

People often ask why I don’t wish for a “cure” for autism. It is because my sons are beautifully and wonderfully made as they are. Diversity is just one amazing part of God’s creation. To be not autistic would make them not who they are. So we support and respect, giving all the compassion and love we have and then some.

I couldn’t possibly leave the session without capturing this joyful soul- Meet the little sister who adores her big brothers (and her kitty)!