just venting: We are completely (well me) enjoying our "break" from ABA in home with the behaviorists... and I totally feel my son is actually doing better -in that he is more regulated with them not here- which then feeds into behaviors because of dysregulation... he is an extreme SPD kid... and regulation is so difficult for him, and to me they totally miss this (although I have explained, given literature, encouraged them to talk to his OT, etc... - trust me, life is still hard all the time,
but he is so much happier, and now that we have his service dog Gretchen... she is such an amazing tool and resource for him AND ME>>> she helps me calm him down when he starts to escalate into a behavior...
I know my son, I know how to help him, his world is really hard- between his Autism, mood disorder, (this is probably more related to regulation in my opinion), and of course all his medical issues- PTSD, .. he is very complicated- not one doctor FULLY understands him... we are always learning something new...
but I"m in a place, where I am ready to just stop "forcing" this external world society says is how it's supposed to be, stop forcing this idea of "expectations"... he doesn't learn in a traditional manner and isn't able to attend a school environment of 30 plus kids- well, we tried it "their way " one too many times and now almost two years later we finally have at least some what of a happy boy who finds joy in a few things, eats food, and even smiles and laughs more than occasionally now!
No one is going to take that away from him - no one....
he will be 10 in less then two weeks... how many more years will we "lose" trying to continue this "mold" - because as much as people say they are accepting... they are accepting when it fits their regimen... he doesn't fit into others regimen, he truly is in his own shape that no one knows what to call.. but to me-
THAT IS OK!
I don't want to spend 3 more years "trying" to make this therapy work or that therapy work, when we know what works (even if it doesn't allow him to participate in life the way "society " says he should...
he is participating within our family- doing it all these other ways, only causes more problems...
I want to fully accept my son for the child he is, and accept we have no idea what his future holds, but he lives in our home (and I want to keep it that way for as long as possible.... ) I don't care if he struggles playing a board game.... (he doesn't even like playing them... so let's move on)...
I know he gets absolutely overwhelmed by well, pretty much everything... but I know how to help him and to not make the situation worse.. because after 2 1/2 years of ABA - agencies switching on us... we are still in the same boat pretty much from when we started... and I"ve seen more progress in this break then I've seen in a long time.. not easy- but he is more regulated and also recovers more quickly - esp with Gretchen now... he doesn't want to engage with us- fine... let him have his space-
I know what he is telling us when he isn't able to respond .... if I force it, I know what will happen... if we ride it out.. life moves on... why is this so bad? It's what he needs, it's on his own time, and when a family deals with so much, when a child deals with so much...
I just want him to live each day to it's fullest, each day to enjoy what comes his way , our way, and help him through his tough days and moments and celebrate the easier days and better moments....
end of story!
Thank you for letting me vent... It's such a frustrating situation because people still think as parents, we don't know and the professionals do know... and unless we work better as a team... well, it's just not the progress we are looking for. I don't care if he has gone from waiting 15 minutes to greet the behaviorists on arrival into our home, down to 5 minutes.. which still varies depending on his regulation more than anything... so is that progress when it's still very inconsistent?? okay- done..... thanks ! LikeLike ·
Time is precious, life is precious, my son is precious... and with almost 10 years have passed- trying to figure things out, doctor's appts, hospital stays,therapy appt, psychologists, evaluations, testing, more testing, seeking second opinions, blood tests, medical tests, bowel irrigations, illnesses, ER visits, more hospital visits, surgical procedures, this specialists, that specialists, being poked, medicine, pills, this is what his life has been for 10 years now
And I think we need to just BE! And the nice thing is, we can right now. Another irrigation is coming up soon, we can tell, that then requires a visit to the surgical center for bowel irrigation under anesthesia, this is his world 2 x a year minimum... every night irrigating him at home...but other then this right now
he is healthy... he eats food, has even weight on him to spare (which compared to 2 years ago, we were talking G tube because he wasn't eating again... I don't want to turn around and he's now 15 and we are still "looking ahead"... I try so hard to live each moment to it's fullest, to enjoy each happy moment that comes our way and know that each difficult moment will pass...
it's time to actually live what I believe!
It's the best thing for him right now!
And that's important!
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