Our battle has ended...for now...the future awaits
After 14 years, I can breathe...just a little.
On Tuesday morning, my son graduated from High School. Once he was handed his diploma, his relationship with the New York City Department of Education was severed. They are no longer required to provide him with services. I have panicked about this for a full year, but now I am at peace.
My son was diagnosed with Autistic Spectrum Disorder at age 3. However, he fell between the cracks at every turn. He was stimming, which is common with autistic people, however, he had excellent language skills, was very verbal and could read and had been reading with comprehension since age one and a half. 14 years ago, Aspergers was not really given as a diagnosis, we traveled to Manhattan to see an excellent, but expensive neurologist who finally gave him the diagnosis of Aspergers at age 7.
As I have written in earlier hubs and blogs, we spent many years being told by so called experts what was "wrong" with our son and what we were in fact doing wrong in treating him. We forged ahead, severing friendships at times and basically keeping away from others who would stand in our way. This was our son and only we knew what he truly needed. He would respond or not respond to treatment. We never gave up although there were many, many days that we wished that we could. Days that were heartwrenching and filled with stress. Times that we as a family almost lost each other. Moments when we wished there was just one place that we could just take our son so that he could get the proper help and we could have a normal life with our other two kids. I am forever grateful to our parents who always came through for us and their grandchildren. I do not know what we would have done without them.
Life as a married couple was and still is a major roller coaster. We are faced with decisions about him that in all honesty we don't want to make. However as all special needs parents know, we simply pick ourselves up and move on. We have no other choice. The day we finally received a letter from New York State declaring our son as a developmentally disabled person was bitter sweet. The letter insured us that he could now be eligible for state funded programs after years of us shelling out thousands of dollars, but it also had a stamp on him that he carries for the rest of his life and it certainly is not what we wished for when we held our newborn son 17 years ago.
I spent the week before graduation sobbing. I was at a loss. What would he do now? He does not quite fit in the "real world" and he has not truly found his place in the "disabled world", he is in limbo basically. I truly lived in a panic those days. Unable to function and to look ahead.
But the graduation morning arrived. My son calmly donned his red robe, hat and tassle. He joined the other graduation candidates and I was sent by him back to be with the family. When he walked in with the rest of his academy, regular education, honors students, my heart burst with pride. He looked great! I was crying and smiling at the same time. I could see him easily since he is over 6'3" tall which also made me smile. He walked in and took his place with the chorus where he would sing with his friends for the very last time. Chorus had been a major bright spot for him and he had earned the medal for chorus at senior awards night two weeks prior to graduation. He had also earned 5 other awards plus a scholarship award.
I readied my flip video camera for the song the chorus was going to perform, "Earth Song" by Michael Jackson. I had not been able to get out of my son just what songs they were performing. It seemed so secretive to him. While watching them prepare, I noticed the director handing him a microphone. My husband and I looked at each other, our son is known for making big statements at inappropriate times so we said, uh-oh..... However, it was not uh-oh, it was wonderful. incredible, one of the best moments of our lives. He sang Michael Jackson's part as a solo in front of over 1000 people in the crowded and hot college gymnasium where graduation was being held. He was amazing. He was excellent. We were thrilled. I am still over the moon days later. I cannot imagine being more proud than I was at that moment. He received a very loud round of applause and cheers from the other graduates. This "square peg" who we have been told to stuff in a round hole, was fine just the way he was. His classmates applauded and cheered for him, just as they did for each other. We are all here and we are all awesome in our own way.
I do not know what the future brings for us and for him. He is going to college part time in the fall and we are looking for part time employment for him. He is excited and looking forward to both. However, before that, I am planning on spending some time this summer enjoying MY son. I have spend 14 years being told to stuff him in a place where he did not belong. His teachers, especially his music teachers, knew better thankfully. He has been on a rough journey trying to be what he just could not be. He is breathing and smiling now. I am too. I cannot believe the peace I have. I did not think I would feel this way. I have the "monkey off my back". I do not have to spend the summer chasing the New York City Department of Education to make sure all the services are in place in the Fall and that his summer paper work is completed. This was my life. I gave up my career, my money and my heart to do what I needed to do for my son. There were many days when I did not think we would get here. But he did it. He made it through the storms, kicking screaming some days, but he trudged on even when he begged us to stay home (some days I gave in, I admit, he needed a mental health day, me too).
I do not believe it will be smooth sailing from here on, we are now dealing with bigger issues as he grows, but we are keeping him in the loop, asking him what he wants to do and watching him mature and grow to a man. He has to learn to self advocate, I will not be able to do this forever, so I am teaching him. There is much to be done. But I am now smiling while I do this rather than crying, or gritting my teeth. My blood pressure has dropped, I even lost a few pounds this week. Stress is a killer, I can feel it leaving my body. What the DOE put us through is incomprehensible, unnecessary, abusive and down right horrendous. No parent should have to fight as hard as we did. No family should have to sacrifice as we have. My other children have watched their friends sail off on cruises, go to Disney several times while we went once, get new cars and new electronics. We have given them what we could but with no true second income, we do not have what other families have as far as money. But we have given them us. We have given them love and they have learned compassion and tolerance. They take nothing for granted and they are always happy with what they get because they know it is not easy for us. All three of our kids are wonderful. I am very proud of them.
It is possible. I believe. I will never give up on any of my children. The beautiful voice of my son singing "Earth Song" has filled my head with faith and belief that anything is possible if you truly believe and never stop fighting.
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