Support for all members of special needs families

The Journey: My Deepest Regret

aidan portland zoo

“I always felt like I was the older brother.”

“I knew I couldn’t count on you.”

“You met my physical needs but that was it.”

These are things I’ve heard over the past few months from my younger son, the one who doesn’t have a developmental disability. He turned twenty this month, and we’ve had some difficult discussions about him growing up with a special needs sibling and a full-time single parent. Prior to hearing these words, I hoped I hadn’t done as badly as I feared. I had hoped he would be okay, that he wouldn’t resent me for the areas where I had failed him.

I was wrong. I honestly did the best I could with the limited support I had. But I should have tried harder.

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I’ve heard from different sources (including a seminar I recently attended) that kids who have special needs siblings either overachieve to compensate or underachieve as perhaps a subconscious way to get their own needs met. And for those in the latter group, the worst time is supposed to be after age 18, as they’re entering adulthood. Their development seems to be in a holding pattern; they are stymied, directionless, depressed. Many of their needs weren’t met while growing up, and it affects them, more than most people realize. More than I realized.

Yes, many children have far worse childhoods, some full of abuse and trauma.  So, no, having a special needs sibling isn’t the worst that could have happened to my son. But he has a right to feel the way he does, to view the whole experience the way he did, and the need to be validated for it.

The special needs sibling? His needs were met twofold, as evidenced by how well he’s doing in adulthood (with daily support). But what about the sibling without the disability? Weren’t his needs just as special? Just as crucial to be met?

*

He’s twenty, and I’m just now teaching him to drive. For whatever reason he said he didn’t want to when he was younger. But the sad truth is this: I was then, as always, preoccupied with meeting his brother’s needs. So he’s ready to learn to drive now. He needs to. And this is a need of his I can fulfill.

So help me, every day I will look for more.

[Image: Aidan, age three, at the Portland zoo] 



12 thoughts on “The Journey: My Deepest Regret”

  • Oh, Tanya, you’re voicing the fear we all feel. I look at my older one, just now launching after college, and see all the ways we allowed him to diminish himself, not expressing his own needs, because his sister’s were so much louder and seemed so much more urgent. In retrospect, we didn’t really do well for either of them in allowing her to dominate the household. But, of course, we did the best we knew how to do at the time.

    I’m glad you have been able to see this before Aidan is totally grown and gone, and that he is willing to be open with you about his feelings. I hope you find a way to repair your relationship, and that he finds a way to forgive you.

    Jan

  • Jan, thank you so much for your kind and supportive words. This is such a hard topic in the special needs world and one that’s not talked about enough. I appreciate your input and insightfulness.

  • This topic is too close to home, and stirs up all kinds of guilt and defensiveness. I, too, feel regret, while at the same time, there was nothing more that could have been done. I think that kids that come from big families, and have one sibling with disabilities, do better than those where they are “the other one.”

  • Tanya, I’m in tears. Your writing is the only place I’ve ever seen my experience growing up as the only younger sibling of a special needs child addressed.

    I was six years younger and yet always expected to act like the eldest, to be the adult. And I was a classic overachiever, particularly in high school and college.

    Just so you know, with the passage of time and some tough conversations, I know my mom did the best she could, and our relationship is solid.

    The other piece of this situation that is rarely addressed is how siblings eventually become responsible for either the oversight of or the actual care of their special needs brothers and sisters as their parents age and pass. My brother lives with me now, and will either live with me or live in a supported environment close to me for the rest of my life. And I have put plans in place for him in case something ever happens to me. Those of us who are siblings to special needs individuals definitely have our own unique paths to walk with those we call brother or sister, both when we are young and then as adults too.

    My love to you and Aiden. I know the conversations are tough, and I know you are both finding the way through.

  • It’s important that you’re teaching him to drive. It’s important to always keep reaching out, letting him know you love him and care for him. He may move out, move on, move away – but you’ll never stop being his mom. It’s not completely comparable, but I know I went through a rough patch in my relationship with Dad in my teens and early 20s. No matter the argument or disagreement, he always let me know he loved me, always tried to be there for me where he could. I’m forever grateful that he did. Just keep trying Tanya, always be there for him where you can.

    • Lex, I love reading this about Dad. I’m so glad the two of you had that. I love how each of us had our times and experiences of closeness with him. Thank you for your encouragement about Aidan. I’m holding onto the love and not giving up!

  • You have done an incredible job AND it sucks that it was impossible to give your second child what he needed. The fact that he is talking about it now is a testament to your parenting. He knows you will hear him and validate him. Sending love to all of you.

    • Ilonka Michelle, I’ve been out of town and not able to respond to your comment until now. I can’t tell you how much I appreciate your kind, supportive words. Thank you!

  • We do the best we can with the hand we’ve been dealt. I have no doubt that you tried to do your best and you love them both more than anything in this world.
    Try to show yourself some compassion and grace. I love you friend!

  • Yes, a very tough topic indeed. Often the needs of someone with a disability are so urgent and consuming that those who are not disabled within the Family unit are not met at their own point of need. There is just not enough of the Caregiver to go around. As a Caregiver to three Special Needs Family members at the present time I find that I do to myself what you have relayed you felt you did to your other Son. I suspect that you probably weren’t always able to meet yourself at your own point of need Caring for the child with disability? That can make us less effective in spreading ourselves around enough… and often, if spread too thin, it won’t matter, we can’t be all things to everyone and the regret and guilt can still come. I don’t have answers, just compassion and the knowledge that most of us do the very best we can with what we have available… and sometimes that just has to be enough. Big Hugs and Blessings from the Arizona Desert… Dawn… The Bohemian

  • Hi Tanya,

    Aidan is talking, he´s got issues which he is expressing to you, that´s positive. Special needs brother or not, I have many friends, some single mums who children do not come under the SN umbrella and they still have issues with their children.

    We need to focus on the strong points of our children and importantly ourselves, we are super women, yeah, we can help build self esteem, teach driving, teach our children to be independent and responsible for themselves. In my eyes you are doing an amazing job and don´t you ever forget that.

    • Paulene, thank you so much for your encouragement! Aidan and I are doing better, spending positive time together, working through it. And you’re right – it happens whether special needs are involved or not. I needed that reminder! I hope life is going well for you and it’s great to hear from you! Take care.

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