So Zach started speech therapy. He never liked it. In fact, he would cry when the speech language pathologist (SLP) entered the room. I was in a fog and didn't notice.
We had some fun this past summer, there was the trip to Sylvan Beach and cousin J's wedding. However, between dealing with Steve's Grandma's death and my mother's diagnosis with lung cancer, I had left my children's care largely with my dear mother-in-law. I still was around, but not quite paying attention like I used to. When things partially stabilized with my mother's cancer, we sent Babcia M. home to North Carolina. As I began thinking of the transition that would take place, how I would have to regain my role of primary caretaker for the kids, my Mother's medical advocate, and trying to handle my workload at my job it struck me.
I viewed a friend's blog who has a son on the spectrum. I went back, and searched it furiously until I found what I was looking for. It was a pervasive development disorder screening tool. I ran the tool and an "oh shit" moment took place. But the score I received put Zach on the mild end of the spectrum - certainly there must be some room for error, and he was not on the spectrum just a stoic kid like his father. Then I asked Steve one day: "When was the last time you heard Zach say anything?" He couldn't remember. Nor could I. His language had stopped. Then I ran my own informal tests - he doesn't respond to his name, he is no longer pointing, he regressed in speech (to a complete stop!), he has poor eye contact.
I read his initial evaluation from Early Intervention - things weren't great, he was delayed for sure - and now he wasn't even that. He was no longer the child they described. He was on the spectrum, I knew it. I needed to get some affirmation of my suspicions. But more importantly, I have to let Steve know. I hated this. I hated knowing I was about to break hearts, dreams, hopes. That is what I was about to do.
I gave Steve the web address for the tool, I had him run the test for Zach. He scored Zach slightly differently than me, but again, Zach is coming up on the spectrum. I am not sure if Steve understood what this meant initially. I know I wasn't even sure.
So, at the next speech therapy appointment, Steve was there, I was there, and we cornered the SLP. We knew that she has 16 years under her belt as an SLP, and had seen her fair share of kids on the spectrum. I knew she could not give an official diagnosis. But I needed to know. Off the record/not officially/ relieving her of all legal responsibility - is he? Yes, she thinks he is on the spectrum. She also says she sees he could have a great future - not to give up, to fight for him and that who knows, maybe one day he could even go to college. (I realize now that these were strong words of encouragement and hope that we need to hear over and over and will never get sick of hearing.)
That was it. My heart had officially shattered in a way I never knew it could. I had been hurt before; from the mild dumped/cheated on by a boyfriend, family disputes, to the more serious and long withstanding hurts such as being the victim of a sexual crime, my mother's illness, the loss of my father. Still, these things paled in comparison to what I was going through and what I am sure Steve was going through. This is the first time I witnessed pure evil acting on my child, my baby, only 2 years old.
Zach had a two year checkup coming up with his pediatrician. This would be yet another opportunity to confirm our suspicions. He said nothing in terms of diagnosis other than to concur that it was a distinct possibility and that we should get in to see a developmental pediatrician (which we had already set the wheels in motion through Early Intervention). The most striking part of our visit? The fact that our doctor spent over and hour with us. The waiting room was filled when we left. Most everyone should realize that a doctor's visit is usually contained to 15 minutes at that. We certainly were given more consideration. We certainly had something worth consideration. This was no longer a worry, this was becoming our reality.
The tears were almost constant. The pain so enormous that I wasn't sure I could bear it. And all the while, my two beautiful children looking at me as a mother to give them hope and belief that life is good and they are safe. The irony of this is that I was terrified. I was so afraid I would not be able to rise to the occasion. I didn't sleep, I barely ate. But I tried my best to act like all was normal for their sakes. I begged God to give me a grave, painful illness and in it's place, take away all that was going on with Zach. My life insurance policy was hefty - it could certainly pay for all the treatment he would need to make him better. Take my life. But no. No one would ever love my children like I do. No one could possibly advocate for them with the same zealousness as I can, not because I have great skill, but because my love is so great and my passion as a mother is so fierce.
So I began to read. And read, and read. Sleepless nights with stress hormones running through you create a sort of concentration I have never had in my entire life. I must have read a dozen books in a two week span, on top of my job, caring for the kids and house, and storming the internet for information. I began a plan of action. I decided to let the others in my life know what was going on. If I didn't have their support, or at least their understanding of our circumstances, I was sure to lose my sanity. So we wrote the letter and distributed. And we cried some more.
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