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How to cope with daughter’s newest diagnosis

(María Alconada Brooks/The Washington Post; iStock)
5 min

Q: My 11-year-old daughter was diagnosed as autistic as a toddler, then with attention-deficit/hyperactivity disorder more recently. She has an individualized education program (IEP) and gets lots of services at school. We’ve also added ADHD meds, which seem to be helping.

We recently had her reassessed at school (psychological, speech, educational, etc.), and they came up with a rather shocking (to us) conclusion: They believe she also has an intellectual disability.

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 step back and ask: “Is this therapist good and right for me?” There may have been a time when this therapist supported you, but you are allowed to want to work with someone new. Don’t be afraid to change your mind and talk to new people. Remember: You are the consumer!

Third, you are in IEP meetings to get your daughter the support she needs. I strongly encourage you to see these as continuous conversations that will last the length of her school experience. Plans will be created and implemented, and changes will be made; some things will fail, and some will not. Rinse and repeat. But by showing up to these meetings (vulnerabilities and all), you are advocating for your daughter. Please remember that no one is perfect: not you, not the teachers, not your daughter, and not the testers. Everyone gets lots of grace here.

As for the future, I strongly recommend finding a parent coach or advocate who specializes in children with autism and intellectual disabilities. (They are out there.) Although therapy for you is useful for managing your emotional life, you also need someone who understands the latest therapies and the best tools. A good coach will also bring you and your husband onto “the same page” when it comes to parenting and the different services that can help your daughter. Above all, a good coach will bring you tremendous hope for your daughter’s future. Although the future may not look the way you imagined, an outside person will provide needed perspective, as well as avenues that can be taken, so your daughter can achieve her greatest potential.

Start listening to Holly Blanc Moses’s “The Autism/ADHD Podcast,” and join her Facebook group, Autism/ADHD Group for Parents with Holly Blanc Moses. There you will find parents with children just like yours, and many of these families are thriving. Good luck!