Stacie Sherman

Lately I feel like there’s a clock counting down the days until Brielle is no longer living at home with me and my husband. Even though we have no set day or time or place for when Brielle leaves us and moves into a residential program, the fact that we have been approved for funding means it is no longer something extremely vague and far into the future. It’s coming, and we’re not ready.

When I say we’re not ready, I am thinking about all the things I do for Brielle that she should be doing herself but isn’t. These aren’t the things she cannot do. These are the things I know that she can do, but that I or others do for her.

The list is long. Everything from putting on her socks and sneakers, to zipping up her jacket, to changing the DVD in her DVD player, to getting her a drink or a snack. Why did I spend so many years doing these things for her? Why wasn’t I more insistent that she do these things herself?

At the time, my actions seemed understandable. If I made her put on her own socks and sneakers, something that could take 3 minutes in the morning would take 6 or longer. If I had her pour her own juice, there was a good chance at least some of it would end up all over the floor. If I left her on her own in the bath, she would skim over her body and not get a good cleaning like she needed to. And why was I still letting her have baths when she should be having showers like they would be giving her in a home?

Every parent, special or otherwise, does stuff for their kids that they should have let them do for themselves. In a sense, it makes us feel needed. We held our kids long after they learned to walk. We participated way too much with their school projects. We made our adult kids dinner and did their laundry.

For many parents, this babying/enabling was not a big problem. Eventually their kids walked on their own, did their own homework, learned to cook for and clean up after themselves.

I’m feeling like this is a bigger problem for me; that I’ve got a limited time to suddenly get my daughter to be as independent as she can possibly be.

I’m writing this post as a kick-in-the-ass to myself. I’m making a list of all the things I want to try to teach her, and then I’m going to get cracking. First step, I need to think of my entire day and all the things I do for her that she should do for herself. (Here you are witnessing for yourself the never-stopping mind of an autism mom. I am not alone. We’re making endless lists of all the things we could be doing, should be doing.)

Start in the morning. When I say I get Brielle dressed, I pick out her clothes and then physically put them on her, with a little help from her. These are two things she can largely do on her own. I started to set up a picture system for Brielle for her clothes. On many of her drawers are little pictures of what’s inside the drawer, i.e. a photo of pants where her pants are folded, etc. By now, she has seen me pick out her clothes so many times that she knows exactly where each kind of clothes are. When I tell her to get her pajamas or underwear, for example, she can totally do that. So why am I not doing that for all her clothes?

The truth is, Brielle can’t really match clothes. Sometimes she does, but I think it’s more luck than style. Sometimes, when she’s eager to get dressed and I’m not moving fast enough for her, she’ll go into her room and pick out a shirt and pants on her own. The problem is, she usually grabs the first shirt from her shirt drawer and the pants that are on the top when she opens her pants drawer. I’m wondering if I should rearrange her clothes by outfit rather than separating them by type of clothing, so if she goes to grab something she would grab an outfit that I already put together for her. (Autism moms, ideas/suggestions welcome here).

So, I think I can make some progress on the dressing front. But when it comes to toileting, I may have to admit defeat. No amount of training or teaching has enlightened Brielle to the point that she does a decent job caring for herself in the bathroom. Her hygiene is awful, and she will probably always need help there. I’m not even going to touch that issue for now.

So, let’s talk about eating, because from the moment we walk into the kitchen, Brielle is a famished drill sergeant. She parks her tush on the stool at the kitchen island, pressing button after button on her electric communications device to tell me what she wants to eat, or handing me things she wants opened or heated up.

Things like opening wrappers, I can get tougher about. Usually if she hands me something to open, I do it mindlessly, but I’ve got to stop that. Nine times out of ten, she can open whatever she’s handing me but it’s easier for her to get me to do it.

I don’t trust her with the microwave. School for a time tried to teach Brielle how to use the microwave, and she was catching on, but I asked them to stop because I had nightmares of her blowing up the kitchen or burning herself. So, if she wants something heated up, she definitely will need someone to help her.

There’s one other issue that has been keeping me up at night, that I need to figure out. I want Brielle to be able to FaceTime with me when she is in the program. I know this might seem like a strange thing to teach a non-verbal person. But it is the only way I can think of that Brielle can see my face and hopefully get a little comfort when she’s there and I’m here. A fellow autism mom taught her daughter to do that, and I want to see if I can do the same thing. I have used FaceTime a few times with Brielle in the past. If she is staying at her dad’s place, her brother will FaceTime me from his phone and then put her on. She will see me and smile and wave, but that is about it. But if that is all I have, and that’s all she has, it’s better than nothing.

It is rare that I write a post that has me asking for help, but help! I need all ideas for easing the transition. I don’t know why I feel like I’ve got a rapidly dwindling hourglass, but I do.

My list is way longer than this, but I am going to stop here. I cannot tackle it all today. But if I can work on these things, make some progress, perhaps I will feel less stressed. (Ha! I hear you say.)

Last week, on one of our nightly walks, I was walking and singing and swinging Brielle’s hand like we always do, and I got a sudden ache in my heart thinking how once she moved, we would not be having those nightly walks. How many more did we have before she was no longer living in my home? 100? 200? 300? I don’t have a number. But even without a number, knowing that I will soon have one brought tears to my eyes.

Our days are numbered. How do we make ourselves focus more on the living and less on the counting and planning and worrying?  I don’t have the answer.