– Anonymous

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.

My Story

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 11^th 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:

1. You can ask 100 people their opinion regarding your child but only you can change the status quo.
2. Don’t be afraid — Change is good!
3. 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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Posted in New York Special Needs, Special Education Advocacy | Comments Off on Sorting Out A Transition Plan for Your Child
Tags: guestblogs, transition planning

Our guest blogger this week is Liane Kupferberg Carter, Writer, Journalist, and Autism Advocate.

(Originally published by The Chicago Tribune)

Maybe it’s just this time of year making me pensive. Summer is ending. Kids are leaving for college. Social media are crammed with articles and advice on how to weather the seismic family shift: “Get Your Heart and Mind Ready.” “Loosen the Times That Bind.” “How to Navigate What Comes Next.”

My autistic son, Mickey, has finished high school. In our state, a developmentally disabled child “exits” the school system at 21. They call it “exiting” — not “graduating.” He has “transitioned” — to a Byzantine, chronically underfunded system of government services for disabled adults. Mickey hasn’t graduated, exactly. Neither have I.

This point was recently driven home when a woman in our neighborhood emailed us an invitation to a barbecue for a club she was starting for “empty nesters.” I get it. When our older son, Jonathan, left for college, it felt like a rift in the family fabric. Mickey, then 14, summed it up when he asked, “My brother doesn’t live here anymore? Are we divorced?”

My husband, Marc, and I inhabit a peculiar no man’s land. Our children are grown, but we are not empty nesters. The realization that we will in all likelihood never be empty nesters is a sadness all its own.

For the past two years I’ve been a member of an invitation-only Facebook group of middle-aged female writers. My fellow midlifers are prolific bloggers. They lament their empty nests, but mostly they write with excitement and joy about rediscovering themselves. They celebrate their newfound freedom to travel, return to the workplace, new hobbies or new passions. Initially the group was called Generation Fabulous: The Women of Midlife.
I don’t feel fabulous.

Maybe it was the woman who last week posted a picture of herself poolside in Hawaii. It wasn’t a self-portrait. It was a photo of her manicured toes. Next to a glass of red wine. Beside a bowl of chocolate-covered cherries. Yes, she styled that self-satisfied photo herself. Yes, I’ve read the study that says Facebook makes people discontented because everyone else seems to live a perfect life. And, yes, I know that people curate what they post. They share their highlight reels. Those chocolate-covered cherries did me in anyway.

I’m embarrassed to admit how much I envy these women. I’m not scaling Machu Picchu, sailing the Galapagos or climbing Kilimanjaro. I’m not “finding” myself. I’m right here. Where I have always been.

I can stand far enough back to hear how whiny I sound. Which makes me feel ashamed. Especially when I know how much ease and comfort I still manage to enjoy. My marriage is strong. Jonathan is thriving. I get paid to blog. I’ve just finished writing a memoir. To complain about something I imagine I’m missing in my life is, as Jonathan would put it, a “first-world problem.”

This past spring I got an invitation from the high school to a workshop on “helping your child survive freshman year at college away from the safe nest of home.” I realized how little I have in common anymore with most of the parents in our community. I miss the easy connections I made with other mothers when all of us were knee-deep in raising children. In the months since Mickey “exited,” I’ve come to realize how much of our social life was based on shared school activities or milestones. Sports. Religious school. Sleep-away camp. Most of those situational friendships have drifted away. Maybe they were never true friendships, but I still miss them. Occasionally empty-nest friends call us last minute for dinner and a movie. They forget that for us, any activity first and foremost involves finding a sitter for our 21-year-old son.

Parents like me buck the baby boomer’s empty-nest trend. What will our “reinvention,” our second acts, look like? According to a 2013 study in the journal Autism, young adults with a diagnosis of Autism Spectrum Disorder are more likely to live with their parents compared with those with other types of disabilities. They are the group least likely to live independently after high school. Lisa Goring, vice president of family services at Autism Speaks, confirms this, telling me, “Approximately 80 percent of adults with autism up to 30 years old live at home.”

Mickey isn’t ready to live somewhere else. Neither are we. Will we ever be? At some point I know that moving out will be in his best interest. I’ve heard too many horror stories about disabled adults who live with aging parents until a health crisis — often the death of the last parent — catapults the grieving, grown child into the state system. A state that must then scramble to place him anywhere it can find, whether the fit is good or not.

Marc and I know we will need to make hard choices. Just not yet. Mickey is going to live with us for a long, long time, until the day we can’t do this any longer. Then we will have to find a safe group home for him. A thought so painful I cannot breathe.

My friend Elaine calls. She has a developmentally disabled son too. We met in a speech therapist’s office nearly 20 years ago. We speak a special shorthand. I tell her I’ve been feeling blue. I confess my mean and ugly thoughts. “I get it,” she says, over and over. It feels like lancing a boil. Painful relief to let out the poison.

“No one who hasn’t lived this really knows what it’s like,” she says.
“That’s true about everything,” I say. “When you had cancer, I was sympathetic and scared for you. But did I really, truly know how you felt? Of course not.”

Of course not.

You can’t completely understand what you haven’t experienced firsthand. That, I suddenly realize, is the point. Everyone has something. A parent with dementia. A child with mental health problems. A sick spouse. In the end, grief finds us all.

“If you put everyone’s worries in a pile in the middle of the room and said, ‘Choose,’ each of us would probably take back our own bundle,” Elaine points out.

“True,” I concede. “Who was it who said, ‘Comparison is the thief of joy?'”
Probably someone with a special needs child.

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Posted in Autism, New York Special Needs, Special Education Advocacy | Comments Off on Guest Blog: Notes From a Not-So-Empty Nester
Tags: liane kupferberg carter