I posted about Thomas last week and a friend mentioned the grieving process to me concerning my son. I don’t know if you ever stop grieving when you have a special needs child. Today I do accept Thomas as he is, I love him more than anything, but there are times the sadness hits that things aren’t the way you want them to be. And I don’t think that goes away. I ran from doctor to specialist to doctor again, over and over when Thomas was a very young toddler/child. When he was 4 years old a psychiatrist offered me a list of medications to look up and decide if we wanted to go that route. I remember they were mood stabilizing meds. We declined to put Thomas on meds at that time, only to have me get off my high horse a few months later when I changed my mind; but the way the practice worked was that we had to see a therapist all over again, then be referred to the psychiatrist, a process that could take months (that we already completed prior, please…). We were getting ready to move back to NY and we shelved the issue until we were settled back here.
When we were back in NY we tried therapy for Thomas again, a psychiatrist, a couple of meds that pretty much made him worse and I decided to take him into Manhattan to a mood disorder specialist for him to rule out bipolar disorder. I figured who better than someone who does this day in day out? It was the first time ever I drove in the city alone, big event trust me. Right before his 6th birthday the specialist psychiatrist diagnosed Thomas with bipolar disorder and gave us his medication recommendations. I’ll never forget him saying, “Even if you decide to do nothing/not put Thomas on medication you have still made a choice, don’t think otherwise.” We did decide to chose medication but little did we know this was only the beginning of trying to find out what was going on with Thomas. In the meantime we tried to be “normal” if there even is such a thing. I went to work at a pulmonologist office, private practice. I learned a lot and was paid very little. But the experience of different responsibilities besides Thomas and my girls was worth it.
It wasn’t until Thomas was 12 years old that the Manhattan psychiatrist specialist refer us to a well known (in that circle) neurologist wayyy uptown in Manhattan, our view was the George Washington Bridge. It was Dr. Arnold Gold who gave my son the most complete physical assessment of any neurologist and reviewed Thomas’ past history and tests so intently. He was the one doctor after all those years to diagnose Thomas: With static encephalopathy. Which is essentially brain damage that won’t get worse and won’t get better. He said it could have happened at the time of birth or before birth in-utero, we would never know. And that’s ok. So we had this diagnosis that literally hit us like a punch in the stomach. Who knew?? We took that info back to the psychiatrist who agreed with Dr. Gold but stood by his diagnosis of a mood disorder. Being that Thomas responded well to the bipolar meds I agreed with him and still do.
So there’s the short version of what we went through to simply get a diagnosis for Thomas. Back in the day a few professionals didn’t understand why we wanted a diagnosis so badly. They said we should be content treating his symptoms. Unacceptable. As a parent you want a name to what is affecting your child, something tangible. I remember a friend calling it naming the beast.
I have a very sharp memory of Thomas’ years growing up. All the specialists, the good and the horrendous. Names I see today and wonder how they still have a medical license. Maybe because Thomas was our first, maybe because it was traumatic, I don’t know. I do remember I grieved when I had to look at special needs preschools for Thomas when he was 3. I had had Alyssa at that time, she was 1 year old and my mom came with me. I remember thinking, this is not the way it should be…and holding back tears when listening to the principal talk about how great the school was. I didn’t care…all I cared about was that I “shouldn’t” be there. I ended up choosing a school but then we moved to NJ.