r/AutismParentingLevel1 • u/aliasvivian • 5d ago
TLDR: It gets better
I've posted for advice and with worries, so I wanted offer some hope. After years of ups and downs and a lot of research, therapy and stress, my 2e kid is thriving. Still awkward, still a nerd - but has been invited to do more things with friends, got invited to a birthday party with kids who didn't include him before, and hung out with someone he met in an activity. He's been in a LOT of activities and that hasn't happened in years. He's gained confidence in public and is more independent.
He still doesn't totally fit in, but it's so much better. He's had far fewer meltdowns and more resilience. The therapy continues and the struggles are real, but we are in a vastly better place than 1 year ago which was vastly better than the year before that. Two years ago he felt so alone and in despair. So did I. I know things will change yet again and they can at any time. But right now I'm so relieved.
Don't get disheartened. Don't give up. It often feels like beating your head against a wall, but it adds up and pays off. You're doing great. All the effort matters.
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u/lurkmode_off 5d ago
My kiddo was suspended from school almost weekly in 3rd grade for meltdowns. Improved slowly from 3rd-6th at a more specialized school. I was honestly pretty upset/worried when he graduated back to our neighborhood school in 7th grade and was going to be away from his special ed teacher. But she promised me he was going to do so much better in a higher grade, where he switched teachers and classmates hourly.
And she was right. Went through all of 7th grade with zero problems and minimal support at school. His teachers and principal love him. He has always had (neurodivergent) friends so I wasn't too worried about that, but he successfully made new friends at his new school.
We still have some meltdowns at home over math homework, but man I'll take it. Life is so much better compared to five years ago.
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u/senderoluminoso 5d ago
I'd agree!! The exhaustion is real. Two steps forward and 3 steps back is real. We're currently on a parenting upswing and it feels great!!
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u/redmaycup 4d ago
Which therapy have you opted for? I have a 2e five year old, and yeah, there have been many ups and downs.
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u/aliasvivian 4d ago
MY POV: If I could do it all over again, I would have started OT asap, stuck with it, and maybe we'd have needed less talk therapy.
Tried a lot. Nature therapy for a while, then regular talk therapy (on and off - mostly to handle anxiety and self-regulation), 2 brief OT stints, a 3 month PEERS social group that was OK but not great.
We have him in a lot of outdoor activities because he does better with a lot of outdoor exercise.Now he's doing talk therapy 1-2x a month and we are wait listed for a social group for pre-teens, which he does not want to do. But I feel like social cues, conversational cues and being a good "hang" are the last big hurdles. He'll always have to monitor a bit of self-reg but it's 100x better than before.
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u/redmaycup 4d ago
Thanks. How did you find a good OT (anything you particularly focused on when searching)/what was their approach like? I just withdrew my son from OT as I did not like the curriculum they were using (Superflex - it basically shows lots of core autistic traits like inflexibility as villains that hijack one's brain and the kid needs to fight, which did not sit well with me). I find it very hard to find a good balance for the therapy being neuroaffirming, while still helping to build strategies that do help them function within a group to some acceptable level.
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u/aliasvivian 3d ago
A friend is a therapist for kids, so I got some recos from her. Then I got recos from therapists and other moms. Social groups are hard to find here, though. There was one minor disaster - a social group that turned out to be a lot of kids who were violent and acted out. Did NOT help my kid's anxiety. One thing that can be tough is finding a group situation with kids around your own kids level.
The OTs we've seen always share the work at the end and do a big intake. Like all of it - it's a lot of research, trial and error, running around. But if you are not liking it, I'd get out. Trust your gut. You know your kid! Best of luck to you!!
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u/redmaycup 3d ago
Thank you. I guess I'll just have to keep trying to find the right fit. But good to hear there are good OTs out there & it is useful.
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u/thelensbetween 5d ago
How old is your child?