Will he live on his own?
Rarely a week goes by when I don’t wonder if my son, Jack, will ever be able to live on his own.
I mean, that’s what kids do, right? They keep you up at night and drink all your milk and leave their wet, muddy boots all over the kitchen floor and cost you a bajillion dollars and then, at some point, they move out.
And you cry and cry and mourn the missed opportunities and the time you yelled about the boots and griped about the milk, but eventually, you both realize it’s for the best. Parent and child are not meant to live together forever.
Before I was a mother, I thought that one of the hardest things in the whole big entire world would be to have a child who couldn’t live independently because of a disability. I’m not even kidding. It’s like I wrote my own script.
And now, I have a child who may not live on his own.
Ever since Jack was about eighteen months old, I’ve alternated between two phrases; he can and he can’t.
Oh, there’s some variation on the wording—he won’t and he will, for example—but it’s really just a running tally of all the things he does and does not do.
He doesn’t point his finger, but he can change the DVD player.
He can turn the key in the ignition to start the car, but he has trouble tying his shoes.
He knows the capital of all fifty states, but he doesn’t understand what the word “float” means.
Then, on a fairly regular basis, I take my imaginary tally sheet and use a weird algorithm in my head with a very convoluted formula to try and answer one simple question.
Will he ever be able to live independently?
Can I say it? I’ll just say it. One day, I would like to be independent too. One day I would like to be independent of Redbox and Oreo cookie challenges and autism. I would like a little breathing space.
It is a two-way street, this independence thing, and some days it feels like nothing more than a dead-end, or a really long detour with a lot of orange cones and flashing lights and constant, ongoing construction.
I know, I know, there are all sorts of assisted living places and group homes and condominiums where they mow the lawn and shovel the snow and fix your faucet it if leaks. We can set him up in an apartment that we pay for and I can stock it with pancake mix and Frosted Flakes and frozen chicken fingers, and then I can check in on him every day—or every other day, if he seems calm.
But this is not what he wants for himself. He wants to live on his own, in a house, in California. I don’t really know why California, seeing as he’s never been there, but there you have it.
He wants a wife, and a family. He wants to be a father, and drive an SUV like his own dad.
I’m not sure I can adequately describe what it feels like for me to hear him talk about his own future. It is equal parts thrilling and alarming, like I’m driving a car very fast, and I just realized the street isn’t paved and the steering wheel is broken.
He can tell me the shortest route to the mall, but once we’re there he might wander away and get lost.
He will talk about Disney movies with anyone, but he has no interest in what the other person has to say.
He knows the population of Zimbabwe, but he gets confused if someone talks too fast.
I know, I know, he’s not even twelve yet and there’s plenty of time and it’s too soon to worry, why just look at all the progress he’s made!
But if there’s anything an autism mama knows, it’s that time is not on our side.
He can, but he won’t.
He should, but he doesn’t.
He has, but he never.
Whether I have realized it or not, every molecule of my being has been dedicated to making this boy independent. Every waking hour, we work on his social skills and his muscle tone and his expressive language and his regulation so he may one day be liberated from an aide school, from the confines of the spectrum disorder, from us.
Some days, I start to get comfortable.
Look at him! He’s making waffles! He’s totally going to live on his own one day.
Did you see? He looked the waiter right in the eye when he ordered his chicken fingers!
He hasn’t said the f-word in three days, things are totally getting better!
Then we travel somewhere, and I watch, two paces behind, as he tries to get through security at the airport; both he and the TSA personnel frustrated and confused.
Please, just step forward. No, not all the way forward, back a little. Please, back a little.
Or as he waits in line for the waterslide, impatient and abrupt when the little kid ahead of him takes a few minutes to muster up the courage to slide down into the pool.
It is time for you. TO GO DOWN NOW.
Or he throws an epic tantrum at school, and he cleans out his locker and insists he’s never going back and the next morning he refuses to get on the bus even though I know—I know—he’s desperate to graduate from high school like his older brother Joey and talks about going to college and wants to be a record producer in California.
His future self changes from time to time—for a while he wanted to be a chef, then the owner of a fast-food restaurant, and now, a record producer. I’m pretty sure all of these require he finishes at least sixth grade.
He wants to, but he may not be able to.
I think about all the little nuances to an independent life for which there is no social story, no preparation.
Scraping ice off of a windshield.
Longer-than usual lines at the post office.
A girl scout selling cookies on a Sunday afternoon.
For the past ten years, I have been trying to adjust his dreams to suit his reality, the way salt water washes over rocks on the shore until they are nothing more than tiny grains of sand.
No, only Joey is going to the birthday party, come on, I’ll take you for ice cream instead.
Please, I need you to hold my hand and stay with me in the store.
Jack, I know but you have to have an aide in school.
Now I know. I know that one of the hardest things in the whole big entire world isn’t having child who doesn’t live independently because of a disability.
It’s hearing this child talk and wish and hope–a child who longs for California and a four-wheel drive Toyota Sequoia and a house and a wife and a son of his own–and knowing I must somehow help him build a castle out of sand.
In the meantime, all I can do is teach him how to swim, even when the water is icy cold and the undertow is dangerous and the waves are crashing down all around us.
March 7, 2016 @ 11:57 am
Interestingly, I just read a fascinating article by Clarissa Kripke who is a Family physician at UCSF and who also has a child on the spectrum. She wrote about successful community living for people with developmental disabilities and how California offers special services and regional centers through the Lanterman Act. UCSF is the Director of the Office of Developmental Care, which among many things provides medical care to medically and behavuorally complex patients, provides training to clinicians in creating a healthcare environment geared to improve care for people with developmental disabilities, and offers support for patients with developmental disabilities. It also seems to help people navigate the process of integration into the community. I am going to look into similar services outside of California, but for the first time have considered moving there in the future (afraid of the earthquakes and wildfires, though). I have to research things, of course, but if California is indeed the most advanced and successful in terms of enabling adults on the spectrum to live up to their potential and achieve their dreams, I’ll seriously consider relocating one day.
March 7, 2016 @ 12:01 pm
Correction of typo: At UCSF, Dr. Kripke is the Director of the Office of Developmental Primary Care (not “UCSF is the director of…”).
March 7, 2016 @ 12:31 pm
Wow. I’m there. My 18 year old daughter is on the spectrum and also has been diagnosed recently with Borderline Personality Disorder. For many years I think I refused to face the reality- always thinking -she is going to get better. She hasn’t. She’s gotten worse. I remember taking a NAMI class for parents a number of years ago and having a hard time with developmental disabilities being classified under mental illness. And now she’s 18 and, and high functioning, but there’s this really nasty mental illness on top of it all. I’m starting to plan for a future which includes her living with us. If at some time in the future a group home becomes a possibility, then it will be a blessing. But we live in NH, and the mental health system is dreadfully underfunded, and it’s only going to get worse with the huge influx of ASD kids who are going to be adults someday. We are older parents, too, as she is the 7th of our 8, and I was nearly 40 when she was born. All we can do is keep going, keep teaching, keep searching for resources. Someday I hope she will be stable enough that we can take a break. In the meantime, I do what I can to take care of myself, to be healthy, physically, emotionally, and spiritually. Otherwise I’m no good for anyone. Keep writing, Carrie. I enjoy your posts immensely. It’s good to know that we aren’t the only ones.
March 7, 2016 @ 12:39 pm
GP’s comments about the services available in California is interesting, but it still isn’t the same as having a typical child grow up and work on achieving dreams. It’s something that parents of children with developmental disabilities must deal with. It’s like grieving a death, but it never ends. Just when you think you have the perfect solution, something happens that hits you on the head and you know life will never be “normal” for you or your child. Our 30-year-old son lives in what most people call a “group home” in our home. They bring him to church and they do lots of things with him, but his life is not the same as it is for our other 3 “normal” kids. Yesterday I sat down in church about half-way up and after church had started I heard someone making some weird sounds and I instantly recognized those sounds were coming from my son. So I went back and joined him and his staff person. My son continued to make weird sounds and stimmed quite a bit throughout the service. It’s life and I’m usually just fine with it, but after all these years it can still be like being hit with a brick to have to deal with it. I hope and pray he’s happy, but I will never know for sure. His life certainly is different, and I’m not sure if it’s what he wants. But at least MY life gets to be a little more normal….because he DID move out of our house!
Thinking of you, Carrie, and praying for you and thanking God for YOU and your blog!
March 7, 2016 @ 12:44 pm
I meant that my son lives in a group home in our TOWN, not in our home! 🙂
March 7, 2016 @ 2:03 pm
I so agree with Gail above. (In fact I also have an almost-18-year-old daughter who is finishing high school and thinking about university and I am thinking “yes, she can go to university and do well academically but she can’t live alone….”). Thank you, Carrie, for talking about what we’re all thinking. Every situation is unique, I know: but the stress and worry and sadness is often very much the same.
March 7, 2016 @ 2:47 pm
Beautiful. I feel like you are in my heart and you are saying/seeing all I hope, fear, and anticipate each day…..thank you for writing and sharing such incredulous reality and pure light into our lives……
March 7, 2016 @ 8:58 pm
It just breaks your heart over and over again. What I really mean is that it breaks my heart over and over again. I wish my daughter could have a boyfriend. I wish she could talk. I wish she could tell me what’s bothering her. And then she hugs me. She’s not a big hugger but when she does, it breaks my heart open.
March 9, 2016 @ 6:17 pm
My 17 yr old grandson is also talking about going to college, making new friends etc. My daughter and his teachers feel he should be given a chance to try a couple of classes at a Community College in his hometown. This particular two yr college has classes for children with special needs. It is one step at a time. Living on his own remains the biggest challenge for his parents and himself. Can it happen? Will it happen?, Try not to crush their dreams, we have no way of knowing the future, but we can continue to have hope. Miracles do happen. Thank-you once again for your posts, they give us all help dealing with the same issues. My daughter is a speech teacher and works with many wonderful children on the spectrum as well as having her own challenges with her son.
March 12, 2016 @ 2:48 pm
Usually, when i get the email that you’ve made a new post i quickly click on the link and read it. For some reason i saved this one for a couple days, until i was in a space i could quietly read and take it all in. Now i know why. Because. This. Once again, Carrie, you’ve put words out there that have been in all of our heads. Thank you.
March 14, 2016 @ 4:39 am
I relate with this a lot. Some days Isla has perfectly normal interactions with her peers and I think she’s probably going to do everything they do. But then she sits on the floor in the breakfast line at school because her sock seam is uncomfortable in her shoe. It’s so unknown and an almost everyday wondering game.
April 1, 2016 @ 8:30 pm
I’m totally there. My son is about to turn 20. He is so capable and yet, he is not able to do some things. My heart hurts for him. He is so stuck and I can’t figure out how to push him forward. I hate it when people say stupid things like “All parents struggle with their kids not wanting to grow up”. That is not what this is people. It’s not the same thing. My heart hurts and I keep moving forward despite his life being frozen.