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heading back down that awful autism spiral

Posted by on Oct. 15, 2013 at 7:21 PM
  • 10 Replies
Met with the neurologist yesterday and we discussed putting our son on a new med. She mentioned ritalin but after researching it it just isn't for us. So now I feel like we are back at square one.

She strongly recommended we create a pecs system for home. He needs structure and she thinks the lack of structure is causing his chaos. So if anyone knows how to start at creating one..I'm all ears since this is new to me.

We're also getting a sleep study done because he's a sleep walker and doesn't stay asleep most nights.

It's just a rough day.. I'm just feeling down and hurt. I hate this.. sometimes ppl think autism is only about the delays or challenges. .they forget about the emotional baggage it brings with it.

Thanks for listening.

by on Oct. 15, 2013 at 7:21 PM
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Replies (1-10):
by Nicole on Oct. 15, 2013 at 8:43 PM

Hugs. I'm new at this, but just wanted to say that I understand...

by Platinum Member on Oct. 15, 2013 at 8:48 PM

Hugs, Mama.  Hoping things turn around soon for you. 

by Platinum Member on Oct. 15, 2013 at 8:49 PM

Hugs.. 2 steps forward.., sleep study will be informative... 

I hear you.. Uphill, swimming against the tide sometimes. Exhausting. 

by Bronze Member on Oct. 15, 2013 at 8:51 PM

It's such a roller coaster ride....hang in there.  We didn't use a pec system but I know lots of others have posted about it.  Maybe do a search and read all the posts others have listed about it on the site.  My son is a huge creature of habit and needs structure.  Some of our off days are due to nothing going on.  We started with visual system of events for the day, pictures of morning routine, afternoon, evening.  He still needs this in school and he's a 5th grader.  It helps him greatly.  I think of it as his planner, if I lost mine I'd be frazzled too!

by on Oct. 15, 2013 at 10:37 PM

Oh momma.... sorry... 

I did try different meds,,, as we tried so hard to be able to help/ control him with fast feedback and constant redirection.... only put us at our wits end, and thats not healthy for the rest of the family or any of us. It was me vs meds........ Oh, the medicine won!  My son could function in a mainstreamed classroom, he went from visual learner, to being able to direction verbally!

by Niki on Oct. 15, 2013 at 10:43 PM
I just started reading the PECS manual. Only on page 13. I'm not sure how it helps with structure. We're starting it because my son won't ask us for anything and rarely responds.
by on Oct. 15, 2013 at 10:47 PM
Visual schedules helped my son a lot (still do). You can use clip art from Microsoft or print photos, cover them with packing tape and attach Velcro dots to the back. Attach those to strips if Velcro or glue flannel to a board or box, creating your own flannel board. The actual PECS system isn't cheap.

Good luck!
by Brittaney on Oct. 15, 2013 at 11:05 PM

We use PECS for communication, we have a three ring binder and I've put cardstock pages inside with 2 velcro dots on each page, then have pictures I've taken of things she knows and wants, printed them out and glued them to notecards, then put velcro dots on the back on them and stuck them to the pages. I always keep the binder on the coffee table and whenever she wants something I ask if it's in her book, and we flip through the pages until she finds what she wants, she pulls the card off and gives it to me. As we build it, I'll organize the pictures into catagories, but I'm hoping to get her a tablet soon and you can get a PECS app for tablets.

Meds are tough ... we're getting a sleep study done too because my daughter refuses to sleep at even remotely the same time each day and we may be doing sleep meds depending on the outcome. Good luck and hope you have some good days ahead. 

by Darby on Oct. 16, 2013 at 7:03 AM

Hugs mama!

by on Oct. 17, 2013 at 1:25 AM
Hugs momma! We are in the process if setting up visual aides for the morning routine and bedtime. We have struggled a great deal at times with the routine. We try very hard to keep it as constituent as possible.

My DS takes 29 minutes at bedtime to set up all his stuffed animals and pillows. We had to put this in the schedule because our bedtime routine was taking over an hour .

I hope you have a better day and rest if the week
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