A New Diagnosis

Have you experienced a time when you learned something new and it really messed with your mind, even though nothing had changed? I shared last week I had a lot to process but I wasn’t ready to chat about it on my blog. Well, here I am now, hoping that taking my thoughts out of my head and onto paper will help give myself clarity.

Last week, when I met with staff at the agency who is assisting me in this process, after a short conversation with Bryson, and I had filled her in on his behaviors, she made a strong statement about Bryson. She has worked in the disabled world for years. Her statement left me a bit stunned but also it was like the final piece of a puzzle was put in place and I could see the complete picture. Let me note, nothing she said was new to me, but it was the first direct statement that had been made to me from a person educated in this area. The word she said was “Autism!”

Let me take you back several years ago, Bryson had a wonderful older gentleman as his community worker on Mondays. On Mondays, he would pick up Bryson and they would go for long walks through different parks all over Michiana (Bryson would say it didn’t like it) but I had told (let’s call him Ed) that Bryson needed exercise and fresh air. They would try to eat out at a different restaurant and Ed would try to explain and teach important life skills. Ed had plenty of experience in the disabled world also and we would engage in conversation when they returned about the events of the day. Many times, Ed would reference something that Bryson had done and how much that was like another young man he had worked with that had Autism. I heard the word but didn’t take it in and do anything with it.

In all the years of IEP (individual education plans) meetings with the school, the word Autism never came up. I remember so clearly sitting in this tiny chair at a tiny table at Bryson’s special preschool that he started attending at 2 years of age. It was my first IEP meeting. The attendees of this meeting were talking about how to categorize Bryson’s needs. They decided to use the words “multiple handicaps” this would allow for a wide range of services to be available to him. I remember the feeling of needing to “label” my son and how it hurt.

For those of you who are not familiar with the IEP process, I will try and sum it up in a brief paragraph (I tried a sentence and that wasn’t enough). An IEP is when a parent/parents sit around a large table with 8-10 other people who are “professional” in their field. They share all the positive and negatives about your child and what services the school can provide for them. They go over all the tests and reports and medical stuff and on and on. They come across as if they know all about your child and what is best. You must sign a million papers and agree to all the services. You are always asked if you want a copy of the parent’s rights document. After a few years, I told them I have too many copies they can keep it.

Bryson had one of every year, as a newbie I thought that the school had Bryson’s best in mind,  but it wasn’t until several years in, I realized that if I wanted what was truly best for Bryson I would have to fight. Fight is what I did, but in all these IEP’s, Bryson’s labels were multiple handicaps, moderate learning disabilities, never Autism. Honesty, I never really knew how to explain Bryson…. my usual comment is “Bryson had a stroke in utero and that made him with a right-side hemiplegia (weakness), CP and he has seizures and learning disabilities.”  I would say when I wanted to be dramatic, that he was missing 76% of his left side of his brain. I never felt the need for more clarity, this was just how it was. This explanation has served to be enough for all these years.

Fast forward to September 22 of this year. Bryson had his yearly neurological appointment. Because we were moving, I wanted to get a letter of Bryson’s diagnosis to put with my application. She kindly looked through his records and printed out a recap of that day’s appointment and all his assessments/diagnoses. She handed me the paper and the first assessment was related to his seizures, the second to his right-side hemiplegia, the third to generalized Cerebral Palsy and the fourth assessment said AUTISM SPECTRUM DISORDER! I looked at that and was in shock… I never knew that they had this on his records. Bryson saw his first neurologist when he was 2 days old. Bryson had four different neurologists over his 24 years, 8 months, and this word was never used. One thought that entered my mind was “I could have gotten him so many more services, easier if I would have just been able to say that word.”  I never knew, I never asked but I didn’t know to ask.

Back to the comment about not knowing how to explain Bryson, I can remember my many thoughts I have had over the years, about how I wished he had a clear diagnosis. He basically “looks” normal. He doesn’t have any of the syndromes that are obvious. There were support groups for the syndromes and for Autism but nothing for the multiple handicaps class. I am grateful that 11 years ago I started attending an amazing special need moms’ group that gave me so much support and hope. We still meet and our bond is one only those with special needs kids can understand.

So back to last week, when she said the word “autism” and explained the characteristics that Bryson had, it made sense. In applying for the disability benefits here, a person must have a qualifying diagnosis and at least three “substantial functional limitations” related to the diagnosis. A substantial functional limitation is when a person needs substantial help with daily living in the areas of self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. Bryson qualifies under four of the five possible diagnoses. She suggested I write out all his “functional limitations” for each diagnosis and how these effect all the areas of his life.

As many of you know, I love spreadsheets, so that is what I did last week after our meeting. Before I started, I typed the word “autism symptoms” into my google search. This was the first time I have ever put that word in and BAM… it was overwhelming, it was the missing piece of the puzzle. Symptom after symptom connected to Bryson’s behaviors and that is what really messed with my mind. My son has Autism. As most of us know, the Autism Spectrum is large, so it can present itself in many ways. But it made so much sense, and it triggered my grief. Now grief is a whole other subject that I can’t address here now, but grief is hard, deep, and painful to work through. I copied and pasted one after another of the symptoms and wrote out how it applies to him personally. It was exhausting but freeing in its own way.

As Bryson and I have been living in ridiculously small quarters the last few weeks and with my new knowledge this last week, I filter our interactions and his comments through this new word “Autism”. It’s amazing how a new diagnosis can help with understanding, now it doesn’t stop the fact that he drives me crazy a lot of the time with his “autistic characteristics,” but I NOW have a name and don’t feel quite as alone.

Why now, why as I am alone with him in the desert in a small RV far from home and hubby did God allow this latest information to be brought to light? I don’t know the answer, but I’m going to trust and lay down my whys and let this be another part of my healing journey. I’m going to let God continue to move in is mysterious ways and know that no matter what diagnosis Bryson has…. God loves him and has the best future in store for him!

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