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30 Apr 2018
Finding CAMP – a FASD Community
About a year ago, I was desperate. Desperate to find an activity or a school or a camp or something my son could attend so he could have a social experience like other kids. Everything we’ve tried, and I mean everything, has been a bust.
He has FASD (Fetal Alcohol Spectrum Disorder), and aside from his brain being compromised in its abilities, he has struggled with terrible anxiety. He has mostly been homeschooled because the demands and sensory overwhelm of going to school have been too much for him. Same with organized sports, scouts, summer camp, and the like.
It’s all just too much for his brain to cope with. And when that happens, he often rages and is very difficult to calm or help. Then he feels terrible about himself. What a vicious cycle.
Shooting completely in the dark, I googled “fasd camp”. I didn’t believe such a thing existed, but maybe I could find something.
I found this blog post, the website and the Facebook page. That’s about all I had to go on, aside from a few “Oh, I’ve heard of that” comments in a couple of FASD Facebook groups I’m in. So I signed up to be notified when registration opened.
(If you want to skip my long-winded review, and just see whether I’d recommend CAMP – a FASD Community, scroll to the bottom of this post.)
Signing Up for CAMP
I put CAMP on the backburner while we struggled through yet another failed school attempt, added medication for depression/anxiety, chaotic life with multiple challenging children, and several layers of traumaversaries around the holidays.
Then January came and I got an email reminder about CAMP. Oh Yeah! Here’s something that might actually be good! So I began the process of signing him up. Total leap of faith. All the way across the country, no idea how I’d pay for it. Or what I’d do with the other kids for a week. Huge challenges.
During the enrollment/paperwork phase, I wrote a book. They asked a million questions. I couldn’t believe how many questions the CAMP folks asked me about my son. I was so impressed. You know why? Because the kinds of questions they asked made it obvious that they get it.
THEY. GET. FASD. Let that sink in for a minute.
NOBODY gets FASD, except those of us living it, right? Nobody. The best teachers, the well-intentioned therapists, the most enthusiastic scout leader. They don’t truly get it, unless they’ve lived it. Well, guess what.
Sharon and Nick Tassone are a mother/son team who GET IT because they’ve LIVED IT. They have a son/brother with FASD, and because of his journey, this camp was born. And they’re doing it right – with the help of FASD experts, medical personnel, psychologists, and an amazing team of very caring and understanding counselors who get it.
But nothing had ever, ever worked out for my guy. Sending him to this camp was more than a leap of faith, it was a huge risk. I couldn’t tell him about camp, though. Not yet. Not until I absolutely had to, otherwise he’d get so anxious and worried that he’d sabotage himself.
I waited as long as I could, but eventually I had to tell him about it, because there are a couple of forms he has to electronically sign to register. And I wanted to make sure he was willing to try, before I paid. He was hesitant, excited, nervous, terrified, and overwhelmed. Round and around, while we waited til Camp.
Waiting and Worrying
As expected, waiting for camp was hard. Behaviors escalated, anxiety set in. My boy had learned he couldn’t trust anybody, except maybe Mom and Dad, to understand him, and to know how to help him through the hard moments. He was pretty sure camp would not be any fun, and would not go well. And guaranteed he wouldn’t make friends. That REALLY never works out.
Long story short, we signed up. We arranged child care for the other kids, and booked a red-eye flight out of Phoenix. I went with, and stayed in a hotel nearby, and got a rental car for the whole week, even though I planned to mostly hide by myself in a quiet room (we’ll call it respite, ok?). You can read about how my week went here and here.
I put everything on the credit card (gah). But I couldn’t see a way around the hotel, the rental car, the twitchy ready-to-come-running stance…because frankly, I’ve developed trust issues right along with my son. I was not convinced this would work out, or that he’d make it the whole week.
We Are Not Alone
When it came time to drop him off at Camp Duncan, he handled it fairly well, but I could see the anxiety rising. I didn’t leave until he gave me the OK. Another thing the folks at CAMP did right – they allowed a long drop off time. Looking around, I’d say they were right on the money. Not just for the kids to transition and medication to be sorted, but for the parents to adjust. There were lots of worried faces, a few tears, and most seemed hesitant to leave. Exactly the way I felt.
You know what that means? It means I’m not alone in this. And neither is my son. Maybe it’s because we don’t have a local FASD group where I live, but I was really struck by how alike we all were at that moment.
Raising children with FASD feels so lonely most of the time. Of course my head has always known we weren’t alone…but my heart didn’t feel it. It did my worried, broken heart good to connect with other parents, even if it was just a shared teary, half-smile across the parking lot, and a look that said, “I know. Me too.”
I think the I’m-Not-Alone realization may end up being one of the best outcomes of all. For me, and for my son.
CAMP Week
As I expected, the week did not start smoothly for my son. On day 2, he was having a very, very hard time and was determined to quit. Nick worked his big-brother magic and convinced my son to trust him enough to last the week. And he did. He allowed himself to trust the adults. And he lasted the whole week. I’m still amazed.
I didn’t hear from my son again all week. I couldn’t decided whether to be worried or relaxed about that. So I mostly worried. Occasionally, CAMP would post pictures to their Facebook page. So I would relax. But my son wasn’t in very many pictures, so I would worry. Get a glimpse into my mind here. If you’re a parent of an FASDer, I’m sure you can relate.
The last night of camp, they live-streamed a video of the Rock Ceremony around the campfire. And there was my son, being recognized for positive qualities the counselors had seen in him that week. He was SMILING. And LAUGHING. And interacting with his new FRIENDS.
Did you hear that? Friends. Not only did he have fun all week, and learn to trust several adults, but he connected with other kids. In fact, at the closing ceremonies the next morning, my son received an award, along with two other campers, for the friendship they developed over the week, and the fun they had together. Lots of Mama tears that morning! (And they weren’t all mine. Remember, we’re not alone.)
Since coming home, some of the friendships have fallen off the radar. Other friendships have continued via phone and social media, ebbing and flowing as all friendships do, but with the twist of FASD brains, requiring parental guidance.
Another thing CAMP did right – provided a way for the kids (and the parents) to stay connected after camp week. Because remember, They Get It. And we are not alone.
Would I Recommend CAMP – a FASD Community?
YES. Absolutely Yes. They did a wonderful job, not just with logistics and practicalities (which seemed to go off without a hitch), but with the emotional aspect of understanding how to connect with our kids’ hearts. And with the disability aspect of understanding their limitations, their needs, and how their brains work.
I’ll say it again: They Get FASD.
What Does My Son Say?
- “When I got angry, they just gave me space, then talked to me like Mom does.”
- “CAMP was fun. My favorite thing was Blobbing where we…(giggle)…and then…(giggle)…” (insert infectious giggle that prevents him from telling the story. A giggle we hadn’t heard in a LONG time. This, from the kid who planned to refuse any outdoor activity.)
Does he want to go again next year? Yes and no. Yes, because he wants to see his friends again, and he had lots of fun, and he felt like a regular kid at summer camp. But then the anxiety sets in, and he’s not sure if it’ll be any fun, or if his friends will be there and still like him, or if he’ll have a hard time. But that reminds him of a story about what they had for breakfast, or how that one guy always made him laugh, or what one of the counselors helped him with. And he starts telling us about blobbing again, because he’s the only one of his siblings who’s ever gone blobbing. Or been to Chicago. Or has friends all across the US.
My Recommendations for CAMP – a FASD Community
Honestly, there is very little I would suggest. Maybe these two things:
- Moms of FASDers worry. A lot. I was somewhat paralyzed with worry all week, mostly because this whole thing was a huge first for us, and I didn’t hear anything for days on end. I know that was meant to foster independence in my son, but a quick daily “he’s doing ok” text would have done me a lot of good ????
- CAMP is expensive, especially for those of us traveling far. CAMP offers a limited number of scholarships for the camp tuition, which is wonderful, but I’d love to see businesses, etc., get on board to provide travel scholarships. I honestly don’t know if we’ll send our son next year, primarily because of the overall cost. Some of that is specific to our family’s circumstances, and there are other limiting factors for us as well, but I know very few families who are dealing with FASD, who aren’t strapped for cash. (Alternatively, I’d love to see CAMP expanded to more places around the country! ???? )
Credit / Sources
This article was published by Kristi at Crazy Quilt Mama on the website www.crazyquiltmama.com.
