Saturday, September 3, 2011

Just Another Autism Blog

I've started this blog mostly as a release for my family and me. It is our story, that unfortunately waaay too many families may relate to. But this is us. I'm putting us out there. There may be funny stories, real and raw feelings, struggles and love.

I'm Jen, mother of 1 amazing boy (Jonathan). Wife to a supportive and wonderful husband (Mike). Full-time employee, part-time runner, recent triathlete, former lifetimer with Weight Watchers, friend to many, daughter and sister to a few. Living in Madison, WI, by way of Nashville, TN, by way of Cleveland, OH. Grew up in Cleveland, which will always be home.

My husband and I married in 2003. Moved to Nashville. Welcomed our baby boy August, 2007. We had wanted a baby for a long time, and had our struggles to get there. But my pregnancy and those sleepless newborn days were wonderful when it all happened.

And since this really is a blog about Autism, I guess I should just dive into that.

Jonathan didn't speak. He babbled. At 18 months, he was evaluated by Tennessee Early Intervention System (TEIS). Since he did understand what was being said to him (receptive communication), he was not eligible for services. At 2 yrs, still not talking. Our ped said he didn't want to get "burned" and wanted Jonathan re-evaluated. This time he was eligible. We started services with TEIS shortly there after. Speech therapy, Early Intervention specialist, gymnastics and the "mother's day out" 2 days a week....his schedule blew up.

It was around this time that we decided to move back to the Mid-west. Madison was where we picked. It seemed like a great place to raise a family. With our house on the market, sold, trip to Madison, house purchased, amazingly a job for me secured, full-time day care set...we were ready.

A week before our BIG move, one of Jonathan's speech therapists handed my a piece of paper. In the months that she had been working with him, his verbal language had not improved. I had seen the paper sitting on a table. It said "Signs of Autism" on it. I kept thinking, "this is not for me, this is not for me." Sure enough, she handed it to me, saying "I've worked with a lot of kids, and think this might be something you need to consider. I needed to at least let you know what I thought, and had to give you this." As much as I tried to appreciate this "going away" gift, I was crushed. I cried right there, and probably all the way home. I knew it...deep down. But was not ready to accept it. I had seen Jonathan with his peers. I knew he was different. I tried not to compare, but how can you not?! He couldn't say Mama. Grunted or lead us to what he wanted. Was a terrific independent player to a fault. Had NO INTEREST in other kids. When he was upset, he'd bite, kick or scratch. But he was the most loving, sweetest boy ever. I was never without hug and kisses. He showed affection...he couldn't have Autism...right?

We made our move. Jonathan found a strong affinity to our blue car. We chalked it up to his only constant in a sea of change. I had already started the process to work with Birth to Three in Wisconsin. Put him in full-time day care, and a speech therapist would see him there a few times a week. He was still being aggressive when he was upset. We got SO MANY incident reports in those first few months. Kids would run away from him because all they knew was that Jonathan would hit them.

We started the process to see a Developmental Pediatrician. We also had started the process for services through the public school, which happens at the age of 3. This is around the time where we learned Madison has a high number of kids with Individualized Education Plans (IEP) and a high rate of Autism...because the care and services here are SO great. We had no idea. Jonathan was diagnosed educationally under the Autism umbrella in August, around his 3rd birthday. We had him evaluated with the Wisconsin Early Autism Project (WEAP), where he was also diagnosed in February...and then finally, after a 9+month wait to see the Developmental Ped at the Waisman Center, we had the medical diagnosis in April of 2011. Labeled with "autistic disorder" this heartbreaking label now let us move forward to get him help.

I should mention...he had made TREMENDOUS progress during this waiting, testing, and evaluating year. He had a new preschool teacher, who saw the kids running away from him. She made sure the other kids understood that Jonathan is our friend, and we don't run from friends. Another teacher taught Jonathan the sign for "please" which ended up being his first true word spoken (the occasional "Dada", "door" and "ball" were heard...but "please" was said correctly.) While working with the new teachers, specialists from the school district, as well as the us participating in a study on speech and language at the University, Jonathan started labeling and using 2 to 3 word sentences.

So here we are. We've started working with WEAP for ABA (Applied Behavior Analysis) therapy, which I'll talk about later. Jonathan turned 4. We struggle everyday. He is speaking more, but still has problems. We're still working on potty training...currently unsuccessfully. He is always trying to control his environment, tantrums often, and scripts (repeats back) episodes of his favorite cartoons. He cannot have a true back-and-forth conversation or answer "yes" or "no" questions.

I could keep going...but I think I'll save more for later.

I still cry....usually at the drop of a hat. But at least I can usually get through a conversation about Autism and our family without the Kleenex.

We didn't ask for Autism. But this is what we were given. I know some people say that these things can eventually become a gift...and I'm still waiting to feel that way. I don't want to "cure" Jonathan. He is who he is. But as a Mother, I want to help him not be so tortured and held by his Autism.

Anyway....this is just us. Just Another Autism Blog...another story of a family in a sea of way too many families that struggle with Autism.


  1. Jen, thank you for sharing your story! It sounds like Jonathan is making some amazing progress. He sure has wonderful parents. We will keep him in our thoughts & look forward to your updates. Know that we are behind you all 100% XOXO Madeleine

  2. Jen & Mike, I was not aware of this "official" diagnosis until reading this. I think that this blog is a wonderful idea for both of you as well as anyone who is lucky enough to read it...parent of an autistic child or not. Jon Jon is blessed to have such wonderful parents and I do not doubt that he will make amazing strides. He is such a wonderful loving little boy, I always loved getting to watch him and having Will and him hang out together. (Will still talks about him) Keep the updates coming and please give Jon Jon a big hug and a kiss from us.
    Love and miss you guys!