I’m really struggling to cope with this. It took me a long time to come to terms with the autism, but I thought I’d (finally!) done that, partly with the help of therapy and a great IEP team. Now this feels like yet another hit, and I’ve been in a really negative head space, having thoughts such as: Is there a point to keeping her on the diploma track? Will she have to live with us the rest of our lives? My husband is very much a “deal with things in the here and now” person rather than a “worry about the future” person, so he’s of limited help regarding my fears.
I am working through some of them in therapy, where I’m getting validation and support, and where it’s a safe space to dump my thoughts without judgment. But my therapist is more of a realist in general. (In connection to this diagnosis, he said, “I’m not going to sugarcoat anything for you.”) This is a helpful approach for me at times, as opposed to my mom’s toxic positivity. (“But she’s so smart! The tests must not be valid.”)
But, I think right now I do need a bit of sugarcoating. Just something to give me more hope and optimism rather than despondency. I know my daughter is still the same girl I love, but I feel as if I’m looking at her differently lately, and I hate that.
We are meeting with her IEP team soon to talk about next steps, and I’m hoping to not start sobbing in this meeting, like I did in the last one. Any thoughts on how to gain a more hopeful perspective, including suggestions for books, websites or Facebook groups? Thanks.
A: Thank you for your letter. You are not alone in receiving shocking news about your child, and you have every right to feel fear, worry and despondency. You have asked me for a more hopeful perspective, so let me try to help you on this front.
Let’s start with the good news. (And there’s a lot of it.)
First, your daughter is being assessed by professionals. I know this may sound ridiculous, but there are many children who have similar brains who will never see a professional. These children become “behavioral problems” and are shuttled around the school system, leaving everyone confused and frustrated. I don’t tell you this to guilt you; instead, I would like to commend you for doing the hard work of getting your daughter what she needs to thrive, even as it comes with some heartache.
Second, you are in therapy. Life with children is already challenging, but parenting children with disabilities or other invisible needs can be downright exhausting. Aside from the changes just to make it through a day, it is common to grieve the family you thought you were going to have. As you get used to one stage, another wave of grief can come as your child develops and new skills and resiliency are required. Having a therapist is a needed safe space for you to process your own worries without bringing them home and placing them on the shoulders of your child. And although I don’t expect therapists to necessarily sugarcoat anything, I will ask that you […]
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I love the Serenity prayer at times like this;
Grant me the serenity
To accept the things I cannot change;
Courage to change the things I can;
and wisdom to know the difference.
There’s not many situations it doesn’t help!
Also, behind a lot of parental worry is comparative expectation; keeping up with all the other parents amazing kids (!) and feeling that yours has to be up there with all the ‘amazing’ things their kids do.
Dont fall for it.
Kids will be what they’ll be and with your love and support, they will find their place in the world.
And I say this as a father of 4 children, of which there is autism, dyslexia, dyspraxia, ADHD and DAMP.
Again, with your love and support at every turn they will be just absolutely fine!
Best wishes