Support for all members of special needs families

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.


12 thoughts on “Hope: Is It in You?”

  • Tanya, Dear Tanya: You are not forgotten. You are heard, and you are surrounded by love and sympathy, albeit from a distance. May God give you strength.

  • Dearest Tanya. It isn’t your son. We know how much you love him and how devoted you are and have always been to both your boys. It’s the system that is broken. Where is the respite? Why do those who so desperately need it have to be the ones taking the Partners in Policy classes? You have carried so much for so long. More than most people could ever fathom. I wish I could give you a break. You are an amazing mother and I admire you. Sending you so much love.

  • Michelle said it all so perfectly. God, I wish we lived in a culture or community where this sort of thing would be immediately rectified. I have been driving around lately thinking about dams and what’s behind the dam and how there’s this drip drip dripping that’s been going on for nineteen years. Thank you for sharing this with us — come here more so that we can listen and hold your hand and nod our heads and even wail together.

  • Dear Tanya, I’m sorry. We know and we are with you. Praying that God will be Strength for you and equip you to make it through the day. Just one day at a time, my friend. Love you truly.

  • *heavy sigh* YES…there ARE definitely other parents out there…me being one of them. I can not begin to imagine doing it all by myself. You are a strong and determined woman Tanya and you will continue…I am sure of it!
    Take care. (((HUGS))) Diane

  • I know you do have it in you to keep on going… but it must suck to have to do everything on your own. It seems like once kids turn 18 there is so much less in terms of services… it is like, once someone is 18, they’re expected to fend for themselves no matter what. I’ll pray that you manage to find the best possible services or home for Nigel so you can have some peace.

  • It is no better this side of the ocean. 21 years plus very limited services and if you find some they are expensive. Sending you lots of courage and energy. Paulene xxx

  • Wow, I so know this feeling and I sometimes hate myself for it. I can understand exactly what you mean. It is the system, but it’s not…we still can’t “forgive” ourselves even when a system is in place. Or at least I can’t. Every time I take Kaeden back to his home away from home, I feel an emptiness and a hole and guilt swallowing me whole…but also complete relief and it all just sucks. I know he is being well-cared for there and I am grateful he has a place to go, but it still isn’t home and never will be and it makes me ache and feel a pain that nearly kills me…and yet we continue on, meetings and appointments and research and still doing all the mom things. and yes, the other kid is FAR FAR FAR easier. I believe you! I know! I HOPE you will find your strength…the strength to put yourself first so you have strength for all the rest. Putting Kaeden in a home was that strength for me. I pray you find your strength too, even tho it remains all-consuming. Love you loads Tanya. I really, really do.

  • Sending you love and strenth- I so know the feeling of this relentless exhaustion – that starts at the molecular level.
    DH after learning of all the digestive probs of R was so depressed one day – that I had to tell him “you know one day it WILL be over because you and I will be dead” This made us both smile but I really meant it .
    Xo xo love and strength

  • Tanya, all I can do is pray. Pray and pray and pray. Throw myself on the mercy of a loving God. Cast the burden on God. I cannot manage my own problems, let alone someone else’s, so I pray. And I will pray for you.

  • I stumbled upon you, click after click, sometime after searching for info about teens and ABA. I am you, minus ten years. We just began the parent training for ABA for my 14 yr old daughter. Also a single parent for the last 5 years, with a younger child who is typical in every way you can imagine.

    Anyhow, I just wanted to say…that yes, we are allowed to be weary, while at the same time our children have made us bigger, better people. I make no apologies for being tired, or upset, or…whatever I am that day…because I do it all with the end goal of equipping my children to the best of their potential.

    Love you blog, btw 🙂

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