Stuck in Nowhere Land. A Teenager with Aspergers
One more year and the lights go out for my son
My son just finished Junior year of High School. It was an academically successful year for him. He finished with a 90 average and passed all of his New York State Regents exams. He has now met the qualifications for a NYS advanced regents diploma. Sounds great.
However, he cannot cross the street unattended. He has difficulty conducting a simple conversation. Tying his shoes still causes anxiety. He wears clothes that are too small unless corrected. He knows how but refuses to make himself a sandwich if he is hungry. He walks back and forth muttering to himself when he is in a situation overstimulates him. He handflaps if he continues to be overwhelmed. He does not like crowds, he does not do his homework unless we stay near him and over see it. If he is in a bad place, he will lay flat on the ground no matter where he is. He still has meltdowns from time to time. He will be 17 in October. He has a diagnosis of Asperger Syndrome.
The NYC Department of education has already informed us that once he is handed the diploma he will no longer be their responsibility. He WILL indeed receive his diploma next June at age 17. At that moment, when we should be proud and excited as other parents are, we will hear that door slam shut on us. Any and all assistance will be cut from our lives the minute our son is rewarded for his outstanding achievement of being a special needs student who graduates ON TIME and with honors. So instead of being rewarded for meeting and fighting through his challenges to succeed, he will be punished. He will be barred from the Transitional Asperger Program he attends each summer which he needs very much. If he is to stay at home, he will revert. He will regress. I have seen it, I know what is coming.
My question is: if the Department of Education is so pleased that he is a success story by their standards, why not go the entire distance? He is college bound. He will attend our local City University which has support and the major he is interested in. However, if he sits home without proper instruction for 6-8 weeks, he will not be ready. I am looking for programs for him, but he will be 17 when he graduates. Most programs are for 21 year olds since special education services in NYC are in place until students are 21. I questioned the Department of education about this. They say," yes they are but not if your child is issued a diploma." So....only students who are NOT academically successful are afforded what they need? Does this make ANY sense at all? Isn't that discrimination?
So our 17, 18, 19 and 20 year olds are in nowhere land. They are told to go to Trade School. Where is the trade school that will accommodate them? Oh, in the next state, over a bridge. So teenagers who have trouble crossing the street are now expected to travel over a bridge to attend school. Others, like my son are eligible for college. My son cannot attend what is in place as of this day because has passed his classes and has no need for remediation. I have contacted an office and they are willing to work with me, provided of course there is need and funding. The big one...funding.
I have heard from many parents about their adult children with high functioning autism and aspergers sitting home. They also fall through the cracks. We fight and battle to help our kids, we have given up our lives, our jobs, our financial security, our sleep and our peace of mind. What have we done? We have blazed a path. A path that is helping children who follow our kids have a better life and their parents have an easier time getting services. However, what about our kids? We win the fight and our kids are too old to enjoy the victory.
In September, the NYC Department of Education is pushing their Special Education reform into play. One of the promises they make is that Special Education students will have the ability to attend regular education classes and be afforded what all other students receive as far as instruction. Yes, my son is proof that this method works. However, he has had MUCH support. I have fought every step of the way to get him speech, OT, PT, a scribe, a full time 1:1 paraprofessional, test modifications, assisted technology, counseling and quiet room. Will every special education student be afforded the same services? I sincerely doubt this. First of all, it is too expensive, secondly, there is not enough staff for this and third parents are not going to fight. They will not know how and if they do they will face "bulldogs" to block them as I have. It is not fun, it is extremely taxing emotionally and most parents will give up. The DOE knows this. Therefore the SE reform will not be the success it should be. Plus, if this is to be the case, then why cut the services when they pass and are college bound? Why not let the senior class finish out as they should by allowing them to complete their summer transition program even after they earn their diploma? Why must earning a diploma equal punishment? This way it is true transition, they transition to college, to life.
My plan for the year is to work as hard as I can to keep lights on for my son. Even if it is not with the Department of Education, then somewhere else. He has struggled and fought. He has worked very hard and overcome major deficits to be successful enough to continue on to college. He does not deserve to be shut out and left home to look at the walls. Services should be for all who have special needs not just those who meet the financial criteria or will never graduate. Every person is different, this is true for those with different abilities as well.