I’ve known for years that my child is unique. I’ve never once envied the ‘normalness’ of other parents.
The priority was, for quite some time, his digestive tract. Having a child with chronic pain means that that is always the first concern. On “normal” days my son suffered typical daily pains quietly. It is all he has ever known so his tolerance for it is high. Other days he suffered in distress. Those were the days that life stood still. Those were the days I stood toe to toe with resident doctors who tried to dismiss us. “Just a virius” they would try and tell us.
Being an advocate for my son isn’t a new concept for me. With every new procedure, every new medication, every new doctor we would face, he would need me to be a cheerleader, a medical coordinator and a fierce voice calling the shots.
During moments where there was less distress we then had to address his other needs. His learning disability, his ADHD, his anxiety. Again, he needed an advocate in the classroom making sure his independent learning plan was being followed and his needs were being met.
Two weeks ago I sat in the school at a round table with three professionals who work with my son to discuss whats missing. “Something was missed in the diagnosis, we need to keep looking.” We talked about his sensory issues, his social skills and his communication skills. We talked about his coping mechanisms when things change or are unfair. We talked about how he would do anything and everything to avoid the hallways before and after recess because it is too overstimulating. He’s been in trouble on a daily basis for staying outside until everyone else is inside, or running inside to the bathroom before the bell, or being too “sick” to go out for recess at all.
An autism test was mandatory. I couldn’t agree more. How fast can we get this done? I made phone calls, booked appointments right away. Time was being wasted. An autism diagnosis could change his life for the better. More support, better funding and more understanding and empathy for his quirkiness.
Two days ago we walked into a doctors office and faced two lovely paediatric specialists. We spent two hours chatting with them. “How do you feel about an autistic diagnosis?” They asked me. “Because it’s a slam dunk diagnosis. No question of it.”
How did I feel? Great! This is exactly what we went in there for. What a weight off my shoulders! I couldn’t agree more! And then we went home. All of a sudden that weight off my shoulders was replaced with a new weight – a heavier weight. I started to process and adjust. This didn’t change anything! It’s just a lable. He’s still my wonderful boy. This is great news. Right?
I barely slept. I got up for work and on my way I heard the song “Thy Will” by Hillary Scott. I’ve heard this song one hundred times at least. Each time I could feel her pain, but not until this morning did the words hit me. “I don’t wannna think. I may never understand that my broken heart was a part of your plan.” I sobbed.
I cried off and on all day at work. “It’s completely illogical.” I said. “This is good news! Nothing has changed. Still the same boy. I’m still the same mother.” But I was grieving. I felt guilty that this was a fairly late diagnosis. I felt like someone had said to me “Why have you never noticed in 10 years that your son only has 9 fingers? How terrible of a mother are you?!” I felt a loss for the future that I dreamed for. I felt overwhelmed by what is to come next. I need a social worker to walk me through all of the paper work that is to come.
I know that this is not my fault – my guilt is not only not warneted, but not helpful. I know that nothing about his future has changed dirasticly. He is still destined for good works. I also know that there isn’t a bit of what I am going to go through next that I will have to walk alone. Even though I know all of this – I am still grieving the diagnosis. Even as I write this in a Starbucks I am wiping away tears.
My cousin who works with autistic families told me that I will grieve, and then it will get better, and then it will get hard again, and that is all very normal. I felt that I should be better than normal. I saw this coming, I’ve been with a sick son for 10 years now and I’ve never reacted quite like this little lable has caused me to react. Worst of it all is that I felt alone. A friend reached out to me, and for the first time someone didn’t tell me “nothing has changed, it’s all okay.” She simply told me that although all of that is true, the truth was that she cried for days when she got her sons diagnosis.
We all have moments in our lives that leave such a mark that life was divided into before and after that mark. This feels like such a mark – one that will shake me and move me into creating an atmosphere of understanding, love, learning and growing – but first I will finish greiving and thats alright. It is going to take time for paperwork to be filled out, for therpies to begin and funding to be approved. It’s also going to take time for me to understand what this all means.
I have a son with autism – and ADHD, anxiety and a series of digestive diseases, but the most important thing is that I have a son who is creative, brilliant, kind, hard working, an entrepreneur, a scientist, an artist, a faith filled son of God, an excellent cook, a swimmer, a runner, a biker and a catcher of bugs.