We recently learned specifically, though testing, just how neurodiverse our 13-year old son is (though we clearly knew about a lot of differences beforehand). We're now taking additional concrete steps to support him. In talking with parent friends (some of whom we've known for a long time) at our son's school, they can listen and appreciate, but most don't actually seem to understand what life looks like from our perspective. That and the fact that I am neurotypical, with little previous awareness of neurodiversity... I'm trying to make up for lost time. I'm wondering if you can recommend an online parent support group or forum for parents of neurodiverse children. Our son is amazing in myriad ways, and I want to both celebrate that, and share/receive support for the challenges that our other parents friends don't seem to encounter.
Thanks in advance!
Hi there. There are plenty of groups both for parents of neurodiverse kids and for neurodiverse adults. It's hard to steer you in the right direction if we don't know what your profiles are, where you live, your ethnic background. You might try Parents Helping Parents, which is a South Bay/Penninsula group with a lot of local connections. Your school district should have a community advisory committee for special education and that might be a good place to ask for resources. You can also check out Understood.org, which probably won't have the super local resources, but is a great site for learning more about all the ways ND people can present. We went on quite a journey with our own dyslexic kid. Other diagnoses we looked at over the years were ADHD (they all get that one some time or another!), sensory processing disorder, 2E (gifted plus something else), and anxiety. Like you, we started looking at our own patterns. My husband turned out to have an auditory processing problem that he compensated for by being very bright and hard-working. I was a gifted kid with all the intensities and eccentricities that come with that. When we started, I was totally above joining support groups. Now, I don't know what I would have done with out them. Talking to other parents who get it, in a nonjudgmental supportive space, gives you context and peace. It's not easy being a parent of a special needs kid. Big hug. It will all turn out OK and you will be stronger and a better person at the other end of the tunnel.
Thanks to the poster of June 5th for your reply. You mentioned it may be easier to point me in the right direction with more information. Here's a bit of background:
-we live in Oakland
-diagnoses include ADHD, dysgraphia, sensory processing disorder, and anxiety
-the recent assessment designated him as a "2E" or "twice exceptional" child
I am the grandmother of an adult son with Attention Deficit Hyperactivity Disorder (diagnosed), who is the father of two nine-year olds with Attention Deficit Hyperactivity Disorder(diagnosed), There is vastly more knowledge and practice for neurodiversity today than there was when my son was a kid in the Berkeley School System where I was a teacher. It was Ritilin. Period. So we coped as best as we can with lots of outdoor exercise and enrichment. I am finding the books by Mary Sheedy Kucinka (Your Spirited Child) and the accompanying workbook very helpful, both for acccepting the conidition, understanding how different brains perceive, and coping. One examply - focus and distractibiity. I was bike riding with the twins for the first time on a forested bicycle trail, learning "keep to the right", "pass on the left", watch out for dogs on leashes, when one of the twins spied a caterpiller on the trail, stopped, hopped off, and "rescued" the catterpiller. Of course on my end it involved, "move the bike off the trail", "watch out for cycliststs", etc. etc. If your child is "spirited" these books may be a help..
My 12 year old child has dyslexia, ADHD, dysgraphia and anxiety. They aren't diagnosed as 2E, but I've found the REEL 2e parents' forum really helpful. Their website has lots of info as well. They are South Bay focused, but don't let that stop you as the meetings are online and their forum is accessible by the web. Here's their website: https://www.reel2e.org/
The great news is that neurodiversity is having a moment right now, and there are more and more resources available every day. When I started on my own journey of exploring what was going on with my 2e child, and how to support him, I found Debbie Reber's Tilt Parenting podcast. It was a godsend. She has a book and an online support group (the Differently Wired Club), which I have not yet joined, but I'm considering it. Also check out Reel 2e, which is a listserv based in the South Bay but does have East Bay members. You might also want to check with Summit Center, as I believe they have both online and in-person parent groups.
Good for you for looking for support for yourself, and for a like-minded community. It is so important! These kids are amazing, but so challenging. You got this.
If your kid is 2E you probably already know about Summit Center in Walnut Creek. They should have local resources. There's a big homeschooling network in the East Bay for 2E kids, also an active 2E parent group. It's been a while since I was in that space, so sorry I can't get you the contact info. Big Minds Unschool and it's wonderful founder Melanie Hayes should have resources as well. It's a private school that specializes in 2E kids. BTW, don't get all hung up on the "my kid is so brilliant" part of the diagnosis. Yes, you have to make sure their intellectual needs are met so they don't go off the rails, but a big part of their profile is the asymmetrical develeopment and emotional intensities. They tend to have a lot of problems socially and are quirky and at high risk for bullying. Again I don't know the other half of the 2E diagnosis. Is your kid on the spectrum? Dyslexic? ADHD? Don't forget to pay attention to that part of your child because it could help guide the choices you make for them. Anyhow, good luck.
Seconding poster's rec for Debbie Reber's work (Tilt Parenting) and Reel 2E.
More resources, albeit not in person:
"Parents of Twice Exceptional Children (2E)" Facebook group. Great place to post questions, search previous discussions etc.
Bright & Quirky (https://brightandquirky.com/); they do run parent support/education groups online and also have lots of resources, annual summit (talks available)
With Understanding Comes Calm (https://www.withunderstandingcomescalm.com/); Julie is a great coach and also offers virtual groups
The Neurodiversity Podcast (https://neurodiversitypodcast.com/); Emily Kircher-Morris has also written a super helpful, practical book re: 2e kids and school (haven't read her parenting-focused one)
My response to your post is delayed, so I hope you see this. We also live in Oakland and have an 11 yo son who also has ADHD, dysgraphia, some sensory processing disorder, and anxiety, and like yours is "amazing in myriad ways." Also, like you, I am neurodiverse too!
My kid is also difficult as heck, and our lives have been impacted massively as we've had to shift the entire focus of our family life to managing his. He's been in a different school every year since 1st grade (he's going to be in 6th next year), and we've just completed a 2-year long negotiation with the school district to get our kid's needs addressed at great personal expense. He will be attending a NPS for the rest of his elementary - and possibly into highschool.
I'd be more than happy to chat or meet up to compare notes sometime! Please DM me.