A Year Without Autism

It’s been one year since I moved my then 22 year old autistic daughter into her supported living apartment. As part of the transition, the apartment was set up weeks before she moved. She visited a few times before the move so she had a visual picture of what she new home would be like. I also gave away all of the furniture that had been in her room in my house lest she think her old space was still around.

She didn’t really want to move out.

Living around me, her Mommy, enabled the exact same weird co-dependent relationship that I had experienced with my own mom. It’s the epic mother/daughter psychodrama that many of us endured not knowing how to stop it or even if we wanted to. And if communication between parents and their children isn’t weird enough already, try adding the sensory processing nightmare of autism in the mix.

I was just so sure when she started high school that her IEP appointed job coach was listening to me. I was so sure that the six years that she spent in high school would transform her into a low wage worker bee of some variety. I was sure she would be wearing a polo shirt and going to some piece work job. I was so sure. We were all on the same team, the I-don’t-want-my-kid-doing-nothing-for-the-remainder-of-her-life team.

There were meetings, and written plans, and paraprofessionals assigned just for my daughter with the sole purpose of getting her ready for work, getting her useful.  Not that I had been useful at ages 18-22 but I was a little more motivated to make money. My daughter is mostly a non material girl. What motivates my daughter?  Food.

There have been three failed attempts at day support. This means that my daughter mostly does nothing all day.  Nothing a parent wants. I can kind of imagine what parents of drug addicted kids feel—that their kid is spinning all day placating some odd desire that they can’t fix. Now, I’m not worried that my daughter will die on the floor of a Taco Bell with a needle in her arm but she’ll slowly kill herself through obesity and all of the ancillary medical conditions that go along with it.

Her staff sees this, but they just can’t do anything about it. If she refuses to go to a day support they can’t force her, and they try to motivate her but at the end of the day she has a right to “refuse services”.

So would she be going to day support if she lived with me? Maybe. Should I move her back here? Probably, but I’m not going to do that. I’ll allow the many compassionate strangers who are trained and get a paycheck do that work.

Before she started having seizures, she took no medication. Now, she takes 8 pills twice a day. Four psychotropic medications (one for seizures, two mood stabilizers and one  antidepressant) an antihistamine and a few supplements. One was recently added and I’m glad because she is speaking more. The fog of a very necessary anti seizure med is real and of course the constant drip of seasonal allergies doesn’t help.  All of these medications have a physician attached to them, it’s a part time job taking her to medical appointments to facilitate these medications. If she could verbally communicate better, we could possibly find a good PCP would take on a few of the meds at once…but that doctor doesn’t exist in her world.  These medication issues alone are reason enough to keep her living with a staff who can facilitate her appointments.

I know that there are people who are caretakers who manage to keep full time employment.  I see single parents do it everyday. Maybe my timing was bad but I lost jobs when I was a caretaker, I wan’t that “mommy warrior”.  I love that now I can work unencumbered by anyone else’s pressing needs. Here’s the hysterical thing: I work with caregivers. Once you’re in this world, you can’t see any other.

My friends and family were tremendously helpful in moving my daughter into her apartment by purchasing all of the decor and kitchen and bathroom stuff. So I get questions

“does she like her apartment?”

“has she had friends over?”

“does she like her independence?”

The answers are never fun, and I’m not a good enough liar.

I see her every week for a trip to the YMCA and dinner.  Our visits are pleasant enough and once a month she spends the night. These visits satisfy the rhythm that she needs. Everything is scheduled, written down by her staff on a calendar in her room. She has my old huge tv and streaming services that I pay for. Her apartment is tidy and she does take care of her belongings. So it’s not so bad.

I will remain the skeptical mother, as I am with all of my kids about their life choices. I just wish that I didn’t have to be the one making hers.


2 thoughts on “A Year Without Autism

  1. I don’t know what to say I’m a struggling single mother taking care of my 24 year old autistic daughter I can’t imagine putting her somewhere without me there we’re so close don’t get me wrong it’s not easy I don’t have a life outside of her but I can’t imagine it any other way but I do feel if I thought that she would thrive outside of living with me I would jump on it right away apparently that’s what my ex would like to put her in a home, but she’s in one. It’s with me, where she’s loved, and I know she’s not being taken advantage of or abused she is also nonverbal not able to tell me if something bad happened to her


    1. The non verbal part is very hard. I just was afraid that the more I waited the harder it would be for my daughter. And I’ll admit, when we’re at the YMCA, I check her body for any bruises….and I know there is abuse but I really think the vast majority of people who work with adults with disabilities are fine. They aren’t “heroes” they are just working for a paycheck like everyone else.


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