Coming to terms with my daughter's disabilities

Mary Duncan

*This is a work of nonfiction based on actual events I experienced firsthand; used with permission.

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One of the hardest but best days of this adventure I call parenting was the day that I accepted the fact that my daughter was disabled, and that it wasn’t something that was going to change.

My daughter doesn’t have “special needs” that she will grow out of, she doesn’t have learning disabilities or the kind of ADHD symptoms that can be easily helped with pills.

My daughter is Autistic and Intellectually Disabled, and those are disabilities that will follow us both around for the rest of our lives.

As you might imagine, I’ve had a really hard time coming to terms with this.

I never really wanted to be a mother, so when the years passed and the diagnoses kept piling on for my daughter, I felt like I was trapped in a nightmare that I would never get out of, and that nightmare was my life.

I couldn't handle having a disabled child.

I couldn’t face the fact that some things about her and our life might never change.

I couldn’t face down the endless string of years that I would always have to be caring for her because she may not ever be able to care for herself.

I just couldn’t handle being her mom.

But she’s my kid, and she’s mine forever, so there are some things I had to come to terms with.

It took having another breakdown and getting a new therapist for me to really start being hopeful for our future, and it wasn’t because I was told for the millionth time that “things won’t always be like this.”

That isn’t something we parents want to hear all the time, you know.

Things won’t always be like this, you may say, to try to comfort a mother at the end of her wits.

But when we are at our wits’ end, when we’re just barely floating along in the darkness, of course we will believe that things will always be like this.

You can’t talk us out of our reality.

But you can coax us into believing a new one for ourselves.

First, you have to accept it: your kid may never change.

I did my homework.

I always knew what I was dealing with, with her disabilities, but for years I was incredulous that this was happening to us, that this was our life.

I would look toward the future and see endless appointments and advocates and the ultimate fear of the inevitable group homes, and I would just deny deny deny.

Nope, this isn’t happening, this isn’t our life. Eventually, things will change.

I was going crazy trying to imagine a different life for us, instead of embracing the truth of what our life actually was.

I can’t change my daughter.

I can’t take her disabilities away with any amount of therapy, interventions, or medication.

She is who she is and who she will be for life.

There are things I can do to make it easier on us.

We are both in therapy, together and separately, and we are both working on ways to make our relationship better, especially as she is getting older.

She’s starting a social skills group where she will hopefully bond with other kids like her, and put the skills she works on in therapy into practice.

But nothing has helped us quite as much as my ability to finally accept her disabilities as permanent and unchangeable.

I can’t keep waiting for her to grow up and hopefully grow out of this.

I have accepted that it won’t happen anymore.

The freedom of that acceptance has opened up the door for me to realize what I really have to do to help us get through the years:

I can’t change her, I have to change myself.

“You can’t change people, you can only change yourself.”

Those are the wise words of my new therapist that had me start feeling better about my future almost the first day I met her.

They let me go.

They set me free in a way I had never felt free as a mother before.

I know they aren’t new words. This isn’t new advice for anyone.

In fact, I’ve probably heard them a million times from the self-help “gurus” out there who put personal responsibility above all else.

I just wish I hadn’t ignored this for so long.

But, it isn’t enough to just hear how you can only change yourself when you still need the question answered:

HOW can I change myself to make this situation better?

Well, first, you accept the things you cannot change. That part we’ve been through.

Next?

You give yourself permission to feel all of your feelings, whether they feel good or bad, it doesn’t matter, your thoughts and feelings belong to you and you don’t have to share them with anyone if you don’t want to.

I share my feelings on parenting here because I believe (and hope) that there are other parents out there like me who feel the same, parents who are going through the same things that can really get me.

Once you identify all of those feelings you have, let them go.

I have to let go of the guilt and shame of these feelings I have surrounding my parenting: that I am the worst, that I can’t handle it, that my daughter deserves better, that it will never get easier.

If I keep carrying around all these negative feelings, things definitely won’t get better.

I can’t change my daughter, I can’t even change myself, but I can start to change the way I think about things, and eventually, that will lead to even greater change.

I could, instead of constantly worrying about the future and what it looks like for all of us, focus more on the present and making each day the best it can be.

I could, instead of blaming all of my current anxiety and depression on my daughter and her disabilities, start looking in the mirror and seeing what it is about me I can change that will make me less worried and sad all the time.

In other words, I could work on me instead of worrying about her.

I could forgive myself for not wanting to be a parent, and keep on doing the best I can anyway.

I could start worrying more about my own future — finding a career, even if it can’t be in writing, to support us and help us move on to the next place in life.

I could love myself even when I tell myself I’m not worthy of love, because of how often I’ve wished away my daughter’s disabilities, the very things that make her her.

I could be good to myself, even when I think I don’t deserve it, because if I can’t treat myself with respect and kindness and love, there’s no way I can expect to get that back from the world and all the people in it.

I love my daughter, disabilities and all, but I just want to find a way to love the life we have together.

It’s a work in progress…like all the things in life that are worth waiting for, changing myself will be hard, but well worth the work.

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