Tag Archives: single parenting autistic child

Hope: Is It in You?

In the past week, I have met with a Vocational Rehab counselor, written a visual support social story about going to doctor appointments, created multiple visual support schedules, and contacted an agency that provides long-term in-home support for people who need assistance meeting their needs. Last week, I left work and picked up my 19-year-old son and took him to sign paperwork for his case manager – twice, because the first agency that was supposed to provide the in-home support fell through, so my son had to come in and sign another release authorization so that his Functional Assessment could be sent to the new agency. His previous case manager asked if we could go to her office to sign some other freaking paperwork. She offered to mail it and I said Yes, please. Next week, I go to our state capital for a six-month course I’m taking called Partners in Policymaking (more about that here). It’s a four-hour drive one way, and I do this every month, so that I can learn how to help my son have the most fulfilling adulthood possible.

This is some of what you do when you have a child with a disability and he or she is transitioning to adulthood. Other parents have to change their adult child’s briefs, or feed them by hand, brush their teeth, help them bathe, or carry them up the stairs. Others look at residential homes for their child, as I did last year. And when they’ve been there for two months and the caregiver calls you and says, “He’s not functioning here,” you have to move him again, back home, and then the process starts all over as you try to find something else.

I go out in the community and see my son’s previous classmates. They are also 19 years old and working their way through college. Some of them live at home still. But they register for classes themselves and take themselves to dental appointments and don’t have Functional Assessments and their parents don’t have to constantly leave work and pick them up and drive them to various agencies to sign release forms. If they have to sign anything they go and do it themselves.

I have been doing this – parenting a child who has had years of therapy appointments, IEP meetings, behavioral challenges, and other issues too numerous to list – by myself for 15 years. And it’s not over yet. It may never be over. I don’t think there is a word to describe how I feel. Exhausted doesn’t begin to cover it. Drained is part of it, but there’s more to it than that. And I have another child, so I know that when there’s no disability involved, you still have to do all the regular things that parents do for their kids, but it’s so much easier. Believe me, it is.

I’m guessing there are other parents out there who feel as I do. And I don’t like to write about it because the last thing I would want is for my son to feel that he’s been a burden to me. He has taught me many things, and I am a better person for it. It may not sound like it, but I’m very grateful. In fact, it’s not so much him and helping him to meet his needs as it is doing it by myself. If being a parent is “the toughest job you’ll ever love,” what is being a single parent? What do you call it when you’re still doing it and your child is an adult?

I realize that I’m not sounding very gracious, like I’m feeling sorry for myself. Maybe I’m venting. But something’s got to give. When you don’t see a light at the end of the tunnel because the tunnel never ends, how do you keep going? I meditate (when I can fit it in), I pray, I have a mantra that I say to myself throughout the day, I go to support group meetings, but I feel like I have nothing left, like this rodeo has kicked my sorry ass, and I have to keep getting up and getting back on that horse, over and over again.

And somehow I do. I push through it and keep going, with a little venting, a lot of patience, and the hope that I’ve got it in me to continue.

 

Image courtesy of www.http://fccowasso.com

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw