Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Abilify’ Category

Pediatrician- Home Base

My neurotypical mom friends are talking about their five year old’s well visits and it usually goes something like this:  “once in a while he’s still having accidents at night, so we talked about that”.

Um, yeah.  We’re not even close to fully daytime trained let alone thinking about night-time training.

At my twins’ well visit this morning we discussed handicapped placards (I now have a prescription because of all the times Wilma SITS in the middle of the parking lot refusing to move and Fred bites her, bites me, and cars stop and honk.  I’m alone with them holding both their hands and sweating.  Fun times.).

We discussed wheelchairs.  Wilma is 54 pounds and most normal strollers go to 55 pounds.  I now have a prescription for a wheelchair or special needs pushchair due to her autism and hypotonia—- there is no way I can go most places with her without a stroller (or now, her fancy schmancy chair that, to get, I’ll have to call insurance, call her neurologist, go to a seating clinic, blah blah blah).  DAILY in the middle of wherever we are, she’ll sit down and REFUSE. TO. MOVE.  No amount of bribing helps.  For that matter, when we take family walks with the double stroller (which we’ve truly outgrown), Fred insists on sitting.  If we get rid of the double stroller and take just Wilma’s wheelchair, my hope is that Fred can use it for a BIT of each walk while Wilma walks, and Wilma can use it when she does her floppy act.  He can get used to walking farther and farther distances because physically HE is completely capable.  She is far more hypotonic than he is.

Any questions about eating or sleeping?  Nope.  Any medical issues at all?  Nope, not really.  Just questions about handicapped placards and wheelchairs.  Hidden disabilities SUCK.  All these moms of neurotypical kids look at my kids who at age 5 can read (one can write), handle a general ed curriculum (one knows third grade math!) and wonder why we’re always off to the neurologist and the psychiatrist.

Fellow special needs moms are telling me not to bother bringing up the toilet training issues, the wheelchair stuff, and generally anything out of the ordinary with the pediatrician.  Just take that to the neurologist and psychiatrist.  I see the pediatrician as being home base for all of our medical, developmental, and behavioral issues.  I like that she has EVERYTHING in her files and when I call to ask a quick question she knows the entire history of each child.

So I’ve got the NT moms thinking I’m nuts for over-doctoring my kids and the SN mommies thinking I’m nuts for trusting my pediatrician so much.  Yep I’m nuts.   And a little sad that though I’m INCREDIBLY EXCITED that I went with both twins BY MYSELF this morning to the pediatrician and nobody got bitten (THANK YOU ABILIFY!)……  I didn’t get to talk about normal five year old developmental stuff, but instead dove deep into the special needs world of handicapped placards and wheelchairs.

Autism Has Made Me a Better Parent

I’m reading this post that my friend made over at SPD Blogger network.  In the last paragraph she writes:

“In many ways, I feel that Autism has made me a better parent. I have come to appreciate the moments and every success that all 3 of my children make. However, it has made me timid. It has, on occasion, made me so nervous that I’m afraid to step out my door to see what the world has in store for us. There are days that I really miss the Mom I was.”

She and I have a lot in common– we both have five year old twins with autism.  I think all the time about how timid autism has made me and how very few times I step out my door WITHOUT pecs, just in case changes of clothing, loveys, and a very healthy sense of trepidation.  Today for the first time in years we had a PERFECT (ok, ALMOST perfect) Shabbos lunch at a friend’s home.  NEITHER of my children misbehaved (greatly).  NEITHER of my children had a sensory meltdown.  BOTH children interacted with the host family’s children.  My son, who pre-abilify would never give a hug to a stranger went up to both the Mr. and the Mrs. of the family (without us asking) and hugged them!  WHAT?!?!?  Abilify might just be doing something for him!  ok, Tenex is still doing nothing for Wilma, but today she was great!!!  So tomorrow when I take the kids out in public, will I be less timid and fearful?  Nope.  I’m realistic— I know that today was a total fluke.

But I NEVER think about how autism has made me a better parent.  So I’m sitting here (with a sinus headache, so it’s not like I can concentrate on work related stuff anyway at the moment) thinking about it.  My twins with autism are my first and only children.   So I can’t compare my parenting to MY parenting of a neurotypical set of twins.

My friends with neurotypical children take some milestones for granted.  For each milestone they don’t have a folder of pecs/social stories/bookmarked websites/loads of posts on online support group websites.  I saw a two year old today who, when she needs to go to the bathroom, goes over to the bathroom, undresses herself, sits on the toilet herself, does her business, washes her hands, and comes back out.  My five year old son is now newly toilet trained, but I help him every step of the way on the potty, remind him to go potty, etc— he absolutely refuses to dress or undress himself— and wiping?  we’re probably a year away from that.  Does it make me a BETTER parent that I’ve spent not hours, not days, but YEARS in preparing my son to get just THIS far with toilet training?  Not necessarily– our kids get to the same place at different rates.  But it makes me a much more STUDIOUS parent.  Out of necessity, everything my kids do comes complete with a laminated social story, a chart, loads of late night hours spent on support group websites.  And now I blog about it all too.

I reach out for companionship.  My friends with neurotypical children are friends with their neighbors, their children’s parents, their general religious community.  I am friends with all of the above PLUS an entire online arsenal of cheerleaders:  fellow autism moms.  Am I a better parent for befriending the women who can help me decode my children’s mysteries?  Nope….. but definitely more introspective.  I think most parents don’t think, when they make a friend…. “how can this woman advise me vis a vis my daughter’s IEP?”  “how can this online website help me learn the tricks to get my son to take off his own sweater?”.

So I’m a more studious and more introspective parent than I would be if I weren’t blessed with children with autism.  And much more timid too.  And that’s why my friends with neurotypical kids will all be at Chuckee Cheese tomorrow, but we won’t be there.

 

Our little update:  Fred is now on abilify and Wilma is now on tenex.  Abilify is calming his desperate questioning “may I calm down?  May I bite?  May I hit?  May I stomp my feet?”  AND is making him more gentle and cuddly.  It hasn’t stopped the biting, but I’m starting to see some differences I like.  Wilma’s tenex is doing diddley squat.  If she’s going to go into full blown crazy mode, this med isn’t stopping it either.  The psychiatrist wants me to give it more of a shot but I think I’m going to ask for risperdal at the next visit.

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