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Challenge: Rise!

It is OK to Wish For Your Special Needs Child

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From time to time I’ll get an email from an autism parent. I read and save* each and every one. Yesterday I received one and it inspired me to write about it. This mom’s email was so personal. And I want her to know that she is not alone. I won’t go into detail or reveal her name but she wrote, “for the first time, I’ve decided to accept the challenge and contact someone outside of my circle.” And then she shared with me a little about her family, her son with autism and her feelings of guilt:

I love my son, with all of my heart. But I struggle a lot. I’m constantly wishing. I wish he talked. I wish he could point. I wish he could tell me what he did at school today…I don’t want to feel like such a terrible mom for wishing, for wanting more out of my son. For not being just happy that I have a healthy son. I’m reaching out in the hope to connect. To not feel so alone.

I get it. All of it. That need to connect and not feel alone. Because being a special needs parent can be a lonely life.

And I completely understand that feeling of guilt for wishing. Because it can feel like a betrayal. As if you were wishing for a different kind of kid. But it’s not. It’s okay to wish.

I love Norrin. I love him, I don’t want to cure him but I still think about all the things he struggles with. There was a time when I wished he could talk and point. And while he’s learned to do those things and more, I still wish.

I wish that he could tell me what he’s feeling. I’m not talking deep feelings about life but if he’s sick, I wish he could tell me what hurts.

I wish that he could explain why he doesn’t like to wear jeans or certain shoes.

I wish he would use his words more instead of making noises – because sometimes I have no idea what he’s trying to say.

I wish he could talk to me the way “typical” kids his age talk to their mothers.

When he’s asked a question and I can see him struggling to find the words, to understand or blurt out, “I don’t know” in frustration – I wish that things were a little bit easier for him.

I wish that some days – like a day at that beach – weren’t so tough.

I wish that I didn’t have to fight so hard to ensure he gets the appropriate education and services. I wish that he had more friends. But I am grateful for the few that he has.

I wish that kids didn’t stare at him.

I am grateful Norrin has the opportunity to play baseball but I wish that he could play sports with ‘typical’ kids.

I wish he liked more age-appropriate things because as much as I love PBS Kids, Nick Jr., & Disney Jr. – I’m kind of tired of Caillou, Dora the Explorer & Handy Manny. Do not even get me started on Thomas the Train.

I wish that I could send him to the neighborhood after school program.

I wish that I didn’t have to put him on a school bus and send him to a school 20 miles from home.

I wish that I didn’t have to meet with an education team to determine the needs of my child.

I wish that he didn’t have to go to summer school because in spite of what some parents think – it’s not a perk.

I wish that he didn’t need to have a therapist work with him after school.

I wish that he could tie his shoe, brush his teeth, use a public bathroom or get dressed independently.

For every invitation, outing, event or gathering, I wish I didn’t ask myself “Can Norrin handle it?”

I wonder if we’ll ever need a passport because I wish that one day, we’ll be able to travel as a family and see other parts of the world.

I wish that I could fall asleep and not worry about whether or not he’ll wake in the middle of the night. Because when he’s up, I’m up – I’m the one who keeps him safe.

I wish that I didn’t fear him growing up. Most parents look forward to watching their kids grow up; they dream of high school, college, career, marriage, grandchildren. I wish I could dream those dreams too. I wish I knew that there will always be someone to look out for him after I die. Thinking about the future, is the thing that worries me the most.

I dream of the kind of world I want and I wish so many things for Norrin. It doesn’t mean I love him any less. It doesn’t mean I wish he were different, I just wish things were different – does that make sense?

Wishing doesn’t make me a bad mom. I don’t want to feel guilty about what I want for my kid. I don’t think any parent should. It’s the things that I wish that give me something to hope for. And hope is something I never want to lose.

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