I feel very inadequate today. I don’t know where I’m going to find the energy to fight for my son in the way that he needs and deserves to be fought for. When we finally took him in to see a doctor late last year, it was the beginning of a steep uphill battle with agencies and medical providers that I faced with all of the might and tenacity that I could summon. It was months and months of phone calls and forms and meetings and trips to the doctor’s office and the ER and the psychologists… Months and months of not being heard until finally I asked a therapist in complete desperation, “How loud do I have to scream that we need help before someone actually listens to us?” A lot louder, it turns out.
I yelled and yelled and screamed and cried and begged and stood up to those who wouldn’t listen and to those who just talked AT me instead of WITH me. My husband and I never gave up fighting. And then our son was admitted into the pediatric psychiatric unit at the hospital, where I stayed by his side until he was released, leaving only once in several weeks to go home and take a nap in my own bed. When he was finally discharged, it was into a day treatment program where he received one-on-one care from licensed professionals in a school setting. He was functioning well and thriving and I took this opportunity to rest. I was so tired from the months of fighting and I just needed to enjoy some peace for a while.
He’s been doing so well and last month he graduated from the day treatment program and was able to return to a traditional school setting full time. I can list a hundred reasons why we didn’t tell his new school about his background, the primary being that we were scared they wouldn’t take him, but I’m not sure if any of them are good enough… Today I feel like they are just excuses that I made to myself because I didn’t want to start the battle again.
I won’t go into the saga of what lead up to the conversation that I had with our son’s teacher today (it’s unimportant right now) but it culminated with him asking me why we had not told him about our child’s needs. He was upset with me. He told me that, as a parent himself, he never would place his child in a school without telling the staff about the child’s important needs. He was visibly shaken at the possibility that he could have harmed our son by using traditional discipline methods in situations that may have been the result of developmental delays and not just stubborn defiance. He was afraid that he had harmed our son and he was upset that we had put him in that position. And I felt like the worst parent in the world. I stammered and made lame excuses and wanted to die because I had let my baby down. All because I was too tired to fight for him.
How do I find the energy and the time to work and parent and advocate and love? How do other mom’s and dad’s do it? I have a great husband who is completely involved, and still it takes mountainous energy and time to raise and love and nurture a special needs child. How will I make this all work? How will we make this all work? I don’t always want to be simply keeping my head above water. Will my son evolve if we’re only ever just treading water?
I saw this video on another mom’s facebook page today and the timing was amazing. Our situation is slightly different, but the struggle is the same.