It’s OK To Not Be OK With Everything

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There’s a video that’s gone viral this week, perhaps you’ve seen it. It’s the mom of a severely autistic boy who’s sharing about some deep struggles she’s been through recently, and the realizations she’s coming to about the future. She’s in deep pain, and I relate to her experiences. Here’s a link to the video if you’d like to check it out.

 

Then there’s the response of another blogger, calling her out for being “ableist.” She goes so far as to state her opinion that this other mother is “wallowing.” That her grief over the difficulties her son faces somehow equates to her not accepting him or embracing who he is.

In my experience, the two opinions aren’t mutually exclusive. I adore my daughter, and I see her beautiful personality and her great gifts. I’m so grateful to be her mother, and to walk with her on this journey. But that doesn’t mean I don’t have grief, fear about her future and that I wouldn’t change a few things if I could.

I’ve tried to imagine what Hope would be like if she didn’t have autism, and it’s impossible. Autism is a part of who she is, and I love her. But I do wish her autism didn’t impair her ability to communicate. I would love to have a conversation and hear about her thoughts, her fears, her hopes and her dreams.

I wish that she was able to communicate when something was wrong with her body, so that we would know before it becomes a health crisis that requires a traumatic hospitalization. Her future is unclear because she’s not able to express herself, and that breaks my heart. For her, and for me.

Her ability to vocalize tunes with perfect pitch is amazing, and when she began to play tunes on her xylophone, I was thrilled and amazed. But I still hurt a bit when I see her struggling with kindergarten level sight words, because I know that this places limits on her future.

When my kids were first diagnosed with autism in 2005, there was a huge push in the autism community to “remediate” autism. Try this diet, try these medications, do this therapy or that. I went to conferences where “recovered” kids, who were obviously uncomfortable, were pushed on stage to discuss their experiences.

By and large, those kids still considered themselves to be autistic. They were, however, articulate and bright, they were looking forward to futures that included higher education and careers and families. And I began to realize that you could have all of those things and still have autism.

My son, Gray, I believe has a very bright future, but he will still have autism. It’s part of who he is, and what makes him special, amazing and gifted. There are no words to express how much I love him, and how thankful I am for social skills therapy, speech therapy and caring, loving individuals who’ve helped him reach his potential.

Hope, too, has had all of these interventions and many, many more. At 15, she is severely autistic. Unless there is a huge change in the next few years, it will probably always be difficult for her to speak understandably. She has difficulty using assistive technology devices, and her learning disabilities have her far below grade level.

She doesn’t understand how to take care of herself, how to do the medical procedures or take the medications that she needs to live, and she would happily spend the entire day watching the Wiggles.

None of these things stop her from being one of the most incredibly kind, loving individuals I know. I delight in my daughter and in my son.

But we have come to a point where we have to realistic about Hope’s future. She most likely won’t be able to care for herself. She will need to have someone make her medical and personal decisions, and that’s heartbreaking. It’s not what we wanted for her.

Brad and I wanted her to grow up with the ability to make her own choices. It’s OK that we hurt in knowing that her life will be dictated by the decisions of others. While we’ll take care of her as long as we can, it’s legitimate to grieve the fact that at some point someone else will probably have to take over her care. I sincerely wish that she will always be in the care of someone who loves her and wants the best for her, but it’s scary to think about what could be.

I continue to work with Hope, I want her to achieve her best potential. I’ll never give up, not on personal skills, speech or anything about her. But I have to realistically prepare for her future based on what we know right now.

When I was a new mom, I hung out in a mom’s group with other new moms and we’d often discuss our concerns about our babies’ development. One of the moms usually would say something along the lines of, it’s all going to be okay, no one goes off to college in diapers. And we’d all feel a little better.

But, sometimes you are still changing diapers when your kid is a teenager, and there’s no end in sight. Sometimes, they’re not going to be able to go to college at all. Sometimes, it’s going to be difficult to accept the future, but easy to completely embrace and accept your child for who they are and where they are. And that’s OK.


These are some books that looked interesting and possibly helpful, although I haven’t read any of them. If you have, I’d love to hear a review.

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