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

Archive for June, 2013

CAMP!

Camp starts next week.  It’s the only special ed camp on this side of town that is truly affordable.  I just spent an hour typing up the “what you’ll need to know” document— just the basic info they should have before working with my kids.  Interested?  Here goes……

 

What you need to know about the ____ twins summer 2013

 

THANK YOU in advance for being wonderful teachers!

We keep kosher so please feed them only what we send.  We’ll send their food each day.  If there’s a special treat coming up (cupcakes or cookies or pizza or something that everyone else is having), let us know in advance and we’ll send a kosher version.     They’re taking the bus to and from this year!  Please make sure there is someone walking them to and from the bus each day.

 

Fred:

Prefers to be on the outskirts playing with toys on his own (the more educational the better- he is EXTREEEEEEEEEEEEEEEEMELY advanced academically).  A good mix of letting him explore on his own and forcing him to interact with others and participate in the group is the best for him.  When he is participating in the group he should have an adult near him— when anxiety hits, he goes from 0 to 60 QUICKLY and hits, kicks, and bites.

His best behavior is one on one with a teen or adult.  If he’s having a rough day with the group, giving him a break to do advanced worksheets with one adult works well— but as much as possible he needs to learn to socialize with the other kids and take turns and communicate, etc.  KEEP HIS BRAIN MOVING or the behaviors hit.  If you’re doing 2+3 and 4+5 with the group and he’s bored, he’ll act out.  Math wise, he’s at about a fifth grade level now— reducing fractions, converting fractions to decimals, square roots….. still learning multi digit multiplication and division—- your challenge is WHAT to do with him to keep him excited academically but still participate with the group socially.  It’s hard.  He wants to learn cursive writing now- that’s something new and fun you can do with him.

He is 100% toilet trained with a reminder everytime it’s time to go (if it’s been an hour and a half to two hours since the last toilet visit, I just tell him it’s time to go.  I also have him go within 30 minutes or so of drinking anything. )  Without the reminders, he’s at about 80% —-  if you don’t tell him to go, he’ll have an accident about 20% of the time.  That’s for pee.  For poop, you have to watch for the dance— when he runs back and forth aimlessly and has a concerned look on his face, it’s time to tell him to try to poop.  He might not tell you he needs to go until it’s too late.J   But I consider him toilet trained, all things considered.  He screams and cries when he’s told to go to the bathroom over half the time—-  he just doesn’t like to have a demand placed on him.  Too bad.  Don’t let him get out of a task by screaming or whining.  Make him wipe himself after #2 as much as possible- he’s pretty good at it by now.

He’s got classic autism and a touch of adhd.  He’s on abilify 15 mg each morning and adderall 10 mg.   We’ll let you know if we adjust meds so you can watch for changes.

 

Wilma:

EXTREMELY social and interactive.  Some of what she says makes no sense but she likes us to play along.  J    Her best behavior is when the activities move quickly and she’s given lots of choices.  Her extreme adhd trumps her autism.  She’s on track academically but not ridiculously advanced like her brother.

Her tantrums can be super severe.  She flops on the ground REFUSING to move.  If you’re transitioning from one room to another and she flops down on the ground and refuses to move, don’t try to carry her or reason with her— just leave one adult with her to calmly wait out the tantrum as the rest of the group moves on. On her meds, her behaviors are INTENSE but short lived.

 

She has megacolon / non retentive encopresis.  So far she’s had 4 cleanouts, 3 xrays, a spinal MRI, and manometry.  We are doing all we can to toilet train her, but none of her bowel movements start in the toilet—they all start in the underpants or pullup—her muscles work, but her nerve endings don’t—PLEASE don’t make her feel guilty or bad about her situation— it’s NOT her fault—– lately, she’ll have a small one in her underwear but then we sit her on the toilet and ask her to push and push some more and push some more and she gets plenty more out into the toilet.  She’s on probiotics, Metamucil, exlax, and twice weekly enemas.  Please note for me daily how many poops she has and whether after a small accident one you’re able to get her to do more in the toilet.  We’ll work hard to get a lot out of her every night after dinner  so hopefully you won’t have DAILY accidents, but expect a few—we’ll give you plenty of underpants changes.  She used to poop 10-17 times a day AROUND impaction—- so we’re down to 2-4 poops a day, generally which is GREAT.  If she goes through underpants super quickly we might switch to pull-ups but she’d prefer to be in underpants.  When she DOES poop on the toilet she needs help wiping.  Like her brother she needs reminders every 2 hours or so to go pee and we make sure she goes about 30 minutes after drinking too.  When she DOES have a poop accident she won’t always admit it so twice a day or so please CHECK her underpants— if she’s dirty, make her try to poop on the toilet (assuming the accident is the beginning of a normal poop) , change her underpants and send them home if they’re salvageable- if not, toss them.  If you sit her on the toilet to poop and she can’t produce, that’s always a mega tantrum.  I’m trying to teach her that if her body can’t poop on demand it’s ok and we’re not upset and we’re just trying to teach her body how to produce normal sized poops without enemas in the right place.  Giving her a sticker or small prize when she tries to poop, doesn’t produce, but doesn’t melt down might be a good plan.

When she misbehaves, it sends her brother into a tailspin.  When she’s melting down, keep him away from her or he’ll go into multi-bite mode.

The foot braces are for hypotonia— she was late with all gross motor milestones and doesn’t have a lot of endurance— if you take a long walk together, she’ll need a stroller or wagon.

She’s got autism, but her adhd is more severe than her autism and of course the megacolon has been running our lives lately. She’s on 5 mg of abilify and 25 mg of adderral at this time.

We’ve been working a lot on her behaviors—- one of the aides last summer kept saying to her “you’re a BAD GIRL— you were a BAD GIRL today!”  —- we HATED THAT.  We’re into saying that she’s a GREAT GIRL with some behaviors she’s working on.  Big difference and since she’s super smart she knows when an adult GETS her or just TOLERATES her, so please watch the behavior of the younger assistants around her.  Many thanks.

 

Result!

okidokee—  I have big news.  6 and a half years old….. 4 GI cleanouts, 3 xrays, countless enemas, laxatives, probiotics….megacolon, non retentive encopresis……  3 days before the spinal MRI….. Wilma had her FIRST ON PURPOSE poop on the toilet that wasn’t enema induced.  YAY!  Sure, she had no idea it was coming, but she understands how to sit on the toilet and get her muscles to push and she’s willing to do it daily without a tantrum now (because of the results post enemas).  So our time to try is after dinner and she sat and tried and bless her soul— she had a result!!!!  And tomorrow she may poop herself twelve times but for tonight it’s a success!  🙂

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