Let’s call my son Johnny. He has a neurological impairment and is ambulatory and impressively articulate. These are my views and perceptions as his mother. I hope the points that I will highlight will resonate with readers. I also hope that some of you will be motivated and proactive in not only making a transition plan but making that plan a reality that is sustainable and seek guardianship, before your child reaches the age of majority if appropriate.
We live in a great school district in Westchester County. My son had had a number of medical interventions and we had a relatively sound understanding of our challenges. Yes, we all know that each child is different and has different needs. My son moved up in grades, followed the Regents track, though he was always in special education classes.
In high school, it all came crashing down and it became apparent to everyone that a Regents diploma was not going to become a reality (for him).
Despite the fact that he had a transition plan and even a transition coordinator set in place in our district, Johnny was no longer interested. As of 11th grade, my son did not want to go to school anymore, thinking it was a huge waste of his time. His CSE agreed that if he didn’t want to attend school there was no way to force him. At that juncture and to my dismay, he was over 18, guardian- less, and therefore emancipated and able legally to make his own decisions about life. Legally, I learned that few options exist for parents to exercise control and supervision over a child after he or she turns 18, whether a child is in school or not. Johnny had not, in the true legal sense of the word, transitioned out of school nor had he transitioned into anything else.
He became more and more out of sync with so many and so much. I watched him, helplessly, as he sat around, slept, played video games, watched TV and frequented CVS to buy candy. This went on for over two years.
I tried many different courses of action: I called adult protective services, the police, the pediatrician, and the neurologist. I cried to friends and family members. I even called Mental Health Association (MHA), who told me in writing that if Johnny wasn’t a threat to himself or to others, they could not do a thing to help me.
What was my problem? My child, a young adult now, was sinking: disengaged, with challenges no meaningful pursuits and no high school degree. My other children, Johnny’s siblings, were progressing. We all felt aggrieved, irritated, frustrated and distressed.
I could find no one, nowhere, no how to help me and Johnny!
There were a number of contributing factors to our rough patch:
1. In as much as he was motivated, he always felt as if he had been pulled down. He was never fully accepting of his own challenges albeit he was extremely knowledgeable of his interventions.
2. I (his mother), had not fully understood that money cannot buy a young adult with a disability services.
3. All of the professionals who had worked with my son had always seen my son as ‘on the fence’; he straddled two worlds; mainstream but not, non-mainstream yet so articulate and able.
Finally, it was made clear to me that the only one who could help my son…was me. I asked myself over and over, “What is appropriate for my son?”
The convergence of these factors made the later years of high school and post-high school a living disaster. I realized that the only way to access county, state and federal services was for him to be in the system and that was a scary thought for me to grasp.
I made one and only one resolution that year: I was going to move my son to a ‘better place’. I didn’t have an idea what exactly that meant nor did I know what that would look like but I committed to knowing for a fact that the status quo absolutely was not working: not for him, me, or the rest of the family.
Since no agency could help, it had to be me. I had the power because Johnny lived in my house with me – otherwise, I realized, I would have had no legal authority over him.
Johnny already had his OPWDD eligibility. I visited Social Security, ACCES VR, and interviewed Medicaid service coordinators (MSC). For the record: if you are NOT happy with your MSC you can and SHOULD change them. There is absolutely no reason for you to stay with someone who is not helping you/ your child.
8 months later… Everything is in place!
Johnny has a new Medicaid service coordinator, who has visited my son numerous times (over the course of just six weeks)! I rented an apartment less than one mile from my house for one year. Johnny is set up there. I buy his groceries; he comes with me, is engaged and helpful. He even washes his sheets – I couldn’t get him to ‘allow’ me to clean his sheets when he lived at home, but now, we are learning how to do laundry and have washed his new sheets. Life is good. Johnny is 1000% more engaged in his life, I am happier, his siblings experience calmness in their home, ACCESS VR is helping Johnny find a job and our MSC is on the case!
What to learn from my experiences:
- You can ask 100 people their opinion regarding your child but only you can change the status quo.
- Don’t be afraid — Change is good!
- We need to organize our kids’ lives so that when we are not around their life can continue and flourish!
If I could impart one piece of advice based on this experience and my knowledge: Sort out a transition plan for your child before he or she reaches the age of majority and seek guardianship, if appropriate. The age of majority is legally 18 in New York; regardless of whether your child has a disability or not.Take these steps before he/she exits high school. Contrary to popular belief, these two moments in time are not necessarily the same as your child may be entitled to exit high school at 21 years of age.
Learn more about our transition planning services by visiting www.specialneedsnewyork.com.
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