When Autism hits home, our story
Battles we have faced
My local newspaper has been running a series for Autism Awareness month called "when Autism hits home". It's a wonderful series that is bringing the issue home by educating the public about their neighbors and what they are going through. I tried to get our story in the newspaper. However not only did it not go into the newspaper, I did not get a response or an acknowledgement. The reason I believe this has happened is that I chose to tell the truth. I did not use this as a promotion of agencies or special education schools, I gave great detail of the horrible journey the New York City Department of Education has led us on these past 13 years.
Our son was diagnosed "on the spectrum at age 2 and a half. We were truly on our own. He was bright, and had speech. Most autistic children we knew at that time did not speak, sat and rocked quietly in the corner. The knowledge most people had of autism can from watching Rain Man with Dustin Hoffman. Therefore we did not have the support of those who were supposed to love us. We were ostracized by family and some friends who did not want to be a part of our situation. Many believed this was self created, as if I would want to have an autistic child. Some believed that we actually "made" our son this way with some lack of parenting skills. Amazing, huh?
We began our journey fighting and have continued to fight. The abuse we have suffered as a couple, as individuals and that our son has gone through is reprehensible. We almost lost everything we had more than once due to cruelty that was placed on us due to our situation. Also from the stress it places on a married couple. We walked basically alone. I thank God day and night for the two most wonderful people on the earth. My parents. Many others have helped us and guided us, but none so faithfully as those who brought me into this world. There is not a thing they would not do for me or for my children. It is an amazing gift and I just hope I am half the parents they are. I would not have made it this far without their support.
Our son was treated horribly through school BECAUSE he was bright. The Department of Education saw it fit to take away everything they possibly could for everything he did successfully. Our son's test scores were high therefore he no longer needed support. His test scores had nothing to do with his need for re direction in class. His need to be guided to and from his classes and to be walked to the restroom lest he start stimming and never get back to class. He suffered and still suffers terrible anxiety and would have long, scary meltdowns. He needed alot of support. His fine and gross motor skills were very poor. He is weak and cannot carry heavy loads, he needed help with his school bag. He tires easily and does not understand that he cannot lay down anywhere he wants. His social skills are very poor as is true with those who has Asperger Syndrome which he was finally classified with at age 8. He had a teacher who was so awful to him that the damage inflicated from her still remains today. Yet people who loved him, supported and admired her rather than protect him. It's been a strange journey for us and continues to be.
We have fought long and hard for every service he has. We have endured long arduous meetings with the Department of Education. We suffer financially since I cannot work and properly take care of my son's needs. I work part time and whenever I can. I am exhausted all of the time. I am also frightened for the future. My son is still considered too high functioning for help. He took the PSAT and scored the number two score in his High School that year. He is pursued by many colleges. He is one of the only Asperger students we know graduating from High School with an advanced regents diploma.
We do not get any financial help for him. No SSI, no medicaid waiver. Nothing to ease our financial burdens. We live simply, we work hard, we sacrifice. We watch others who have alot of money do what they want to do and we know we are doing what we HAVE to do even though it's hard. Our son is special and unique. He is gifted and funny. But not many people know that. He is also reserved and reclusive. We have two other children, younger, they make many sacrifices, but we also run alot for them. We are heavily involved in their soccer program, basketball teams and scouting programs. We try to give them a normal life although we know it is difficult for them. We are lucky, they are very good kids.
We are grateful for those angels in his schools who have gone above and beyond. They outnumber those who hurt us and him thankfully. He has people who love him for who he is and that is a blessing. We are very happy to have found the GRACE foundation where he has found his singing voice even though he had tried for years to perform at schools and they did not want him. While in first grade, we were asked to tell him to not sway so much during the Christmas Pageant performance. He was six, but he was labeled by ignorance. He perfomed once in middle school, he was Davey Crockett and was awesome. He has the best time while in this show. He now has friends, it is a great thing even though he still does not seek to go out with them or contact them when he is not in school. Hopefully that will come soon.
The Department of Education will not travel train him unless we give up his one to one paraprofessional. I am guessing their logic is that if he can travel on a bus, he can negotiate school alone. One has nothing to do with the other. He cannot travel safely at this time, he has run out into the street, we watched in horror one day as he did this at a busy intersection. He only knows that he has a destination, he can't be counted on to follow the traffic rules. although we work on this constantly. The Department of Education has made it quite clear that he will be cut off on graduation day in June 2013 from all services and their obligation to him ends even though I pointed out that most special education students retain services until 21. They point out that he does not qualify since he is getting his diploma on time. So he is discriminated against because he is smart and thrown out into the street at 17. He won't even be allowed to vote yet, but he is on his own. I asked to retain the summer TRANSITION program By definition it is a transition program and he is transitioning from High school to college. He will be the only one declined because he is bright enough to graduate on time. If I do not find him a program he will sit home from June to August regressing and probably not be able to attend college due to this. All the work, down the drain.
So all this on me. Why does the local newspaper not want to tell my story? They do not want to print the truth. That our services do not want to help the ones who fall through the cracks. The ones who are intellectually okay by the numbers (test scores mean all) and they especially don't care about our OLDER autistic kids. I do not know if I can even get help from many of the agencies out there because our son can do some things for himself, therefore he may not "eligible". What else is new, we are rarely "eligible" for anything. We are educated, we work, we are married, own a home, our children are not delinquents, we are legal citizens, therefore the United States has no help for us. What else is new as I said earlier.
So my mission is to keep fighting and to empower other parents with the facts. That no matter what rosy or bleak picture is placed in front them, they are to remain vigilant since the only constant you can rely on is you, and your instincts. We know what our kids need and we must battle, fight fire with fire if we must. My son may be growing up, but he will always be my son, I will always love him and never give up on him.