I’m having a really hard time dealing with this. It took me a long time to understand autism, but with the help of therapy and an amazing IEP team, I thought I did it (finally!). I was really in a negative head space and had thoughts like: Does she need to live with us for the rest of her life? Help with my fears is limited because I’m a person who “manages things in the here and now” rather than someone who “worries about the future.”
It’s where I get validation and support and it’s a safe place to drop my thoughts without judgment. (In connection with this diagnosis, he said, “I’m not going to sugarcoat anything for you.” (“But she’s so smart! The test shouldn’t be valid. ”)
But I think it needs a little sugar coating now. Something that gives me more hope and optimism instead of despondency.I know my daughter is still my favorite girl, but recently I feel like she has changed her view of me. I hate it.
We will be discussing next steps with her IEP team soon. I hope I won’t sob at this meeting like I did last time. Any thoughts on how to get a more hopeful perspective, such as book, website, or Facebook group suggestions? Thanks.
A: Thank you for your letter. You’re not the only one to receive shocking news about your child. You have a right to feel fear, worry and discouragement. You have asked me for a more hopeful view, so let me try to help you on this front.
Let’s start with the good news. (And there are many.)
First, your daughter is being evaluated by a professional. It may sound silly, but there are plenty of kids with similar brains who never see an expert. These kids become ‘behavioral problems’ and scurry around the school system leaving everyone confused and frustrated. I’m saying this to make you feel guilty It’s not. Instead, I would like to commend you for working so hard to get what your daughter needs to thrive, even if it involves heartache.
Second, you are in therapy. Life with children is already difficult, but raising a child with a disability or other unseen needs can be downright exhausting. It is common to grieve a family member. As you get used to one stage, another wave of grief can come as your child grows and requires new skills and resilience. Having a therapist is the safe place you need to process your woes without having to take them home and put them on your child’s shoulders. I’m not expecting you, but I’m begging you to step back and ask, “Is this therapist right and right for me?” There may have been times when this therapist was supporting you, but it is permissible to want to work with someone new. Remember: you are the consumer!
Third, you attend IEP meetings to get the support your daughter needs. I highly recommend that you consider these as ongoing conversations that last the length of her school experience. Some fail, some don’t. Rinse and repeat. But by attending these meetings (like Vulnerability), you are defending her daughter. Remember no one is perfect. Not you, not your teacher, not your daughter, not your tester. Everyone benefits a lot here.
For the future, I highly recommend finding a parent coach or advocate who specializes in children with autism and intellectual disabilities.(They are there.) Therapy for you can help you manage your emotional life, but you also need someone who understands the latest in therapy and the best tools. Bringing you and your husband “on the same page”. Above all, a good coach gives my daughter great hope for her future. The future may not look like what you imagined, but an outsider can provide the perspective and steps to take so your daughter can reach her full potential. can.
Start listening to Holly Blanc Moses’ The Autism/ADHD Podcast and join her Facebook group, Autism/ADHD Group for Parents with Holly Blanc Moses. There are parents out there with kids just like you, and many of these families are thriving. Good luck!