Thinking about his future scares me.
His teacher sent home a pink sheet of paper with a list of questions printed on both sides and asked our family to answer the questions about Isaac’s future plans. I don’t usually procrastinate when it comes to paperwork, but it took me a month to finally write the answers in pencil and return it to Isaac’s teacher.
My husband Chris and I discussed things but didn’t have concrete answers to some of the questions.
I wrote most of the answers in pencil because they could be erased and changed. Ink seemed too permanent for my uncertainty.
I’d like to say, “Oh? You want to know his future plans? He’s planning to graduate from a four-year school where he will major in finance or chemistry. Maybe he’ll start out at a community college the first few years. He’ll live on campus. Then he’ll land a good job after graduation so he can support himself.”
That’s not in the cards for him, really.
This is more realistic:
“He’ll stay at his special school until he’s 21 years old. Even when he’s 21, he won’t be able to stay home alone. Then he’ll graduate, and our anxiety will escalate when the school bus no longer comes to our door every morning. It’s likely he’ll never get a driver’s license. He’ll live at home with us until we can find a suitable home for him. Where? When? I have no idea. With training and a job coach, he’ll work somewhere – a place with routine and predictability – maybe a restaurant, grocery store, retail store, or an agency that serves adults with disabilities and helps them live in the community. Let’s hope the funding for people with disabilities doesn’t completely dry up. It will be difficult for him to support himself financially, even with a job.”
The good news is that he’s fourteen, and we have seven years until he graduates to figure things out. Seven years sounds like a long time, but I know it will pass quickly.
I don’t have the foggiest idea what I should be doing to prepare for this transition.
Should I be doing anything now?
I don’t know, but the clock is ticking.
Earlier this week Chris and I had a meeting at Isaac’s school to discuss and review his Individualized Education Program (IEP). I’ve been in dozens of these meetings over the years where we discuss Isaac’s educational programming – his needs, his progress, his old goals, his new goals, and our parental concerns.
This week’s IEP meeting was different because we talked about Isaac’s future plans. For the first time ever, Isaac attended the IEP meeting.
“We’re going to have Isaac join us for a little bit,” the teacher said.
Isaac walked into the conference room alone with his speech device hanging around his neck. He was wearing a light green surf shop t-shirt with a slogan on the front that said “Golden State of Mind. All Day Every Day.” I couldn’t help but notice his long legs in his black Nike sports pants.
He walked cautiously into the room but looked confident when he sat down in a black oversized office chair. He looked both small and grown up at the table, not a child but not quite an adult. He looked proud but tentative.
“We’re having a meeting today because you are going to high school next year,” his teacher said.
“Yes,” Isaac replied.
“Can you introduce everyone?” she asked.
“Elizabeth,” he said with his voice. “Morgen.”
I wanted to grab my phone and take a picture of this teenager – my handsome son with the blue eyes and short blondish hair – who was sitting directly across from me at the table. But I didn’t. I watched as he sat patiently with his device and communicated. He was calmer than I had ever seen him at home.
When Isaac was diagnosed with autism when he was almost two years old, he rarely responded to anyone. Our social worker meowed and mooed and crowed while standing on a piece of furniture in our living room, and Isaac never looked her way. She yelled his name repeatedly.
And now he was sitting in an IEP meeting, introducing adults who sat at the table. It was one of the most beautiful things I had ever seen.
“My dad’s name is Chris,” he said with his device. “My mom’s name is Tyann.”
“Cynthia,” he said with his device, as he looked at his teacher.
Then an educator handed him a piece of paper with the name of someone at the table he didn’t recognize. He typed her name into the device slowly. “Jill,” he said.
All eyes were on him. He looked comfortable and intentional and calm and capable. I could see all of those things in his body language and in his eyes.
“Why don’t you go back to the classroom and check your schedule,” the teacher suggested.
On his way out – with a little prompting – he said, “Bye.” It was barely audible, but I heard it.
“He did really well,” his teacher said.
What happens when he goes to high school? What happens after high school is over?
Fortunately for Isaac, high school means staying in his same school –just moving to the opposite end of the building. He’ll see a lot of the same people.
“I think he’s excited about it,” his teacher said.
I’m sure that’s true.
I don’t have many reservations about Isaac’s transition to high school. He’s had competent teachers. The principal is fantastic. He works with a fabulous speech-language pathologist. All of the people who work with Isaac seem to enjoy him. He’s thriving in a special school for students with disabilities.
I have reservations about high school graduation and beyond, when his support dwindles.
What do we do when the school bus no longer arrives every morning? Who will care for him every day? How will his life have purpose? How will he feel included and valued in the community?
I wish Isaac could tell us more about his future aspirations and dreams. What does he want to learn? Where does he want to live and work? What does “success” mean to him?
He needs a voice in these decisions.
Because he can’t yet tell us about those things, I look at his behavior.
I see the way joy spreads across his face when he pushes empty shopping carts to their storage location.
I see his enthusiasm for sorting recycling at home, loading it into our van, and proudly unloading it.
I see the way his face lights up when he opens doors for customers at any business.
I see how proud he is at school when he announces the arrival of the school buses at the end of the day. He uses his speech generating device and the intercom on the phone. He’s precise and on task. I’ve been told how his self-confidence has grown since having the job.
Shortly after Isaac was diagnosed with autism, a worker from the Department of Human Services was assigned to our family for a few weeks. It was an emotional time when everything was raw and fresh and new. I’ll never forget what she said when she sat at our kitchen table.
“I work with adults who have disabilities. Many of them live in group homes, but not all of them. They have jobs. They have friends. A group goes bowling every Tuesday night. Sometimes they go to a restaurant for dinner. One of the guys saves some of his money so he can go to the theatre. Many have loving families who are involved in their lives, especially on the weekends. Most importantly, they have made a life for themselves. I mean, they have a life!”
I’ve never forgotten her words because her message gave me a new perspective. It wasn’t the life a parent had initially envisioned for a child, but it was a meaningful one where an adult had a home, friends, work, and joy. It wasn’t the end of the world – it was just a different one.
I don’t know what the future holds for Isaac, but I’ll never give up on him and his dreams. His road won't be an easy one. My husband and I will do everything we can to support him, but we can't do it alone.
I want Isaac to be successful and as independent as possible. I want him to always feel safe and protected. I want him to be able to communicate. I want him to be employed in a job he enjoys.
I want him to be happy.
I want him to have a life.