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

Archive for March, 2012

Teaching Independence

LOVING THIS POST from Four Plus an Angel.  I’m starting to think about kindergarten.  This fall.  New teachers.  A new school.  Will their teachers be flexible?  Understanding?  Push them to their potential?

The ease with which my son has learned his times tables (you’re supposed to learn those in second grade— not preschool, right?) is the ease with which my friends’ kids have learned to dress themselves (nope, we’re not even close).  The ease with which my daughter has learned all of her state capitals (GREAT memorization skills!) is the ease with which my friends’ kids have learned to use the toilet.  (sure, my kids are partially trained, but we’re still at least a year away from them self initiating a bathroom visit, undressing, doing their business, re-dressing, washing hands without prompts, and going back to their activity.)

My kids have incredible skills in very specific areas, but their adaptive skills are so incredibly weak I worry daily about their independence.  Taking off shoes?  Putting on shoes?  That’s a kindergarten skill?  Kindergarten is coming this fall—- oy, we’re in trouble.  Fred’s shoes are velcro and EVERYTIME I ask him to take them off by himself he screams, whines, and says “can you HELLLLLPPP ME?”.  We’re at least a year from him being able to put them ON, heaven forbid have shoes with TIES!

It’s been recommended that both twins join a newly forming integrated kindergarten group.  Integrated.  It’s my big wish for them, and my big fear.  I WANT them to have neurotypical models.   On the other hand, I want them to fit in.    This year, Fred has been in an autism unit.  He’s been the most “high functioning” student in the class—- toilet training, verbal, academically advanced.  Next year, all of a sudden, most of his classmates will be developmentally…. on target?  And he’ll be one of if not THE most developmentally delayed in the class.  Unable to share and take turns appropriately.  Unable to toilet himself.  Unable to dress himself— including that crazy kindergarten skill:  SHOES.  This year, Wilma HAS been in an integrated class so I’m less concerned about her.  She already has experience being light years behind her friends in adaptive skills.  I wish she cared!

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I could have written this!

Every now and then you see a post on another blog and think  “oh my gosh, I TOTALLY could have written that!”.  ok so it wouldn’t have been as funny or insightful, but that’s my experience!

I’ve been meaning to bitch about explain Fred’s toilet training journey a bit better (we’re not even CLOSE to done with Wilma’s, sadly), but this sums it up well.  I don’t even know this family or this kid (gotta follow this blog now).  But dang, similar experience, that’s for sure!

EVERY darn time I tell a mom of neurotypical kids that toilet training Fred took a while, I get the explanation that their kid took a whopping TWO weeks to train.  When I mean a while, I mean I started at 2 and a half and am not done at 5.  But we’re seeing great progress.

Have you you been following JillSmo’s  All Kids Do That series?  YOU SHOULD BE!

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.

Mah Nishtanah- 4 questions by the Aspie Son

LOVE THIS!

Hattip:  http://ponderingprose.wordpress.com/2011/04/04/mah-nishtanah/

 

Mah Nishtanah – Four Questions by the Aspie Son
Written from the perspective of a boy with Asperger’s Syndrome

Published in: Spirit Magazine, and Inyan – Hamodia’s Weekly Magazine – Passover Edition, Spring 2011

“Mommy, everybody is looking. I don’t want to say this out loud, can I go in the kitchen?”

“Tatte Layben, I… Ma! If Zeidy is here by the seder, then I think I should say Zeide Layben”.

“Zeide Layben… Ma! Zeidy is alive, and everybody can see that. Why do I have to announce it?”

“Zeide, ich vil bei dir fregen di fir kashes…

Mah Nishatana Halayla Hazeh… Why is this night different from all other nights? On all the other nights I can eat my rice cake that I eat every night, this time. But tonight, and on this night only… (Ma! We eat matzah the entire Pesach, why do I have to say on this night only?!)…more than any other night, why do we have to eat potato? You know it’s soft and mushy and I hate the way it feels in my mouth? And then when I do swallow it, I can’t drink again until after the next Kos, after saying mah nishtanah?

Why is this night different from all other nights? On all the other nights I can sit with my comfortable shabbos shirt, the one that is made to look like a shirt but is really a t-shirt, the one that has no seams or labels? Why on this night do I have to wear this itchy glittery shirt that I made with the O.T. by therapy? My fingers got all sticky from the glue and I had glitter on my eyelids for three days and three nights. And also, I think there are some rabbonim who hold that glue is chometz! And people might not know that glitter is made of very small, 1 mm pieces of paper, glass or plastic painted in metallic, neon and iridescent colors to reflect light in a sparkling spectrum. Glitter was invented by Henry Ruschmann. This is really very interesting! Which reminds me of the next question…

Why is this night different from all other nights? On all the other nights I keep my salad dry without dressing because I hate dressing and nobody forces me anymore. But tonight, and on this night only, and also tomorrow night at the second seder because we are in galus and in chutz l’aretz, not like the people who in Eretz Yisroel have only one seder each year. In America, we have two, and also if an American goes to Israel for Yom Tov, they must have two sedarim. That’s why I don’t want to go to Israel on Yom Tov because it would make me feel all mixed up inside and my brain would feel all funny and I would see everything in jumping zig-zags and I would get very upset and I would have to make that noise with my mouth because it feels better afterwards. I would much rather have two seders over here, as long as I can stay in the kitchen. And, also, if I can have my romaine lettuce dry, without being forced to dip it in the charoses, which is very old apples and are already brown, and brown is my worst color.

Why is this night different from all other nights? On all the other nights I can sit on my special chair by the wall in the kitchen, where nobody can touch me or breathe near my plate, but tonight, and also tomorrow night, we have to eat reclined, and that means I would be touching Ari’s chair. If I touch Ari’s chair, I will touch Ari’s right leg and I know he will kick me. Last year in Bubby’s house he kicked me after the third kos, and when I was third grade, I was leaning on cousin Chaim from Lakewood who was 14 then, and he almost kicked me but I hated touching him because I was worried that I would get too close to his beard. His beard looked like it would be prickly and it would make me feel like I need to run to my room and bang my head for a long long long time. And then my therapist will get upset that I didn’t do the brushing exercise.

Ma! When is this over? Can I stop saying Mah Nishtana and drink some grape juice now?”

I Love My Calendar Guy

here’s how you know when your preschooler has been the calendar student for the day: he comes home and announces “it’s Friday March 2, 2012. The weather is cloudy. The book of the day is the Big Red Barn and the song is Head Shoulders.” Thanks hon.

They Like Me! They Really Like Me!

WOW!!!! I won an award!!! This blog has won a reward!!!! I’m speechless!!!!  Ah who am I kidding— I’m NEVER speechless!

Now I must abide by the rules of acceptance. Those rules are:

1. Thank the blogger who presented you with this award.

Thank you to My Family’s Experience With Autism for bestowing the Kreativ Blogger award upon me!   I first met this wonderful blogger on facebook.  Before Wilma was diagnosed, I used to spend a little time in Circle of Moms.  (I’m sorry to say Cityville has usurped my Circle of Moms time and I don’t hang there anymore)—– I saw a fellow mom of twins who was also dealing with autism.  Who had twins the same age as mine.  Who went to the same college I did.  Who’s also Jewish.  We bonded.  Now, though I’ve never met her in “real life”, she’s one of my favorite facebook friends.  Our kids have been through a lot of the same things and I have more in common with her than I do with a lot of my local friends, mostly moms of neurotypical kiddos.

2. Post a photo of this award.

3. Share 10 things about yourself that your readers don’t know.

This will be fun!

(1) I’ve had a LOT of surgeries.   Deviated septum, gum surgery, jaw surgery, tongue surgery, knee surgery, a breast reduction, 4 impacted wisdom teeth removed, a C section (my favorite!), gallbladder surgery, and maybe some others I’m forgetting.  🙂   And a lot of weird diseases.  Pleurasy, folliculitis, pancreatitis, kidney stones, gallstones, horrific hives that were misdiagnosed as two different skin diseases, and a psychiatric condition I’d rather not share here.  Ironically, my eyesight is PERFECT.  You’d think I’d at least be wearing glasses with all this weirdness happening.  Currently, my ailment is a BAD bunion.  I don’t have health insurance so I’m pushing off the surgery.

 
(2) I haven’t seen my parents in 15 years.  They didn’t come to my wedding.  They don’t know their grandchildren.  It’s a long, sad story.  I might someday blog about it, but frankly, this blog is about my current life and my kids, and they don’t have a lot of real estate in my current thoughts.

 

 

(3) I became an Orthodox Jew in 1996 and the first Orthodox Jewish wedding I went to was my own.

 
(4) I have twins with autism, I work at home, I have housework (oh who am I kidding— my house is a mess), but I NEVER miss an episode of American Idol.  I dvr it and even if I watch it days later, I WATCH IT.  I’m watching it right now.

 
(5) I want more children.  But we have no health insurance.  And I don’t want to be pregnant.  And we can’t afford more children now.  When we had the two we have, we were much better off financially.  My husband lost his position in 2008 and since then has been employed, but for a fraction of the pay, and no benefits.  I’m making less money now than I was as well because now my primary focus has to be Fred and Wilma– their behaviors, their appointments, all the meetings about them (board of developmental disabilities, IEP meetings, etc).

 

(6) I am fifty pounds overweight.  I should be about 130 and am about 180.  Yeah I said it.  When I was pregnant I was about 200.  TWO hundred— ICKY!   I’m usually around 180 and HATE that there are now people on The Biggest Loser who weigh less than I do.  That’s why I like the BEGINNING of the Biggest Loser season best.  I DO work out, but I DON’T eat right.  However I do drink a Visalus shake each morning.  Now if I could just get my lunch/dinner/snacks under control.

 

(7) I prefer changing diapers to doing dishes.  For real.  I’d rather wipe poop than dried food.  I’m so weird.

 
(8) I’m a serial entrepreneur.  My first business was going just fine, thank you…. and I added a second one because I wanted to use the service to promote my first business.  But it turned into a side business.  And now I’m about to launch a third business.  I haven’t even told my husband yet.  But it’s going to happen very soon.  Four businesses—- the kids, the first direct sales biz, the second biz which I started to promote the first one, and now…. well…..  I’m insane.

 

 

(9)  I’m a hoarder.  Not like on the show where the old ladies live amongst roaches and dead rats.  But I have more books than I’ve ever read.  I have more makeup than I’ve ever worn.  I have more music on my ipod than I’ve ever listened to.  I have more food in my kitchen than can feed three armies.  I don’t know why I’m this way but at some point I’m just going to go through the house with a thousand trash bags and cure myself.  PS, I bought three new blouses today.  So I should get RID of three blouses from my closet, right?  Not bloody likely.

 

(10)  I used to be fairly fluent in Hebrew, but I haven’t used the language in many years so now I can read it and understand it, but don’t trust myself to speak it.  When my Israeli landlord and Israeli doctor speak to me, I speak to them in English.  We want our kids to learn Hebrew so eventually we’ll use more Hebrew in the home but my husband is far more fluent at this point than I am.

 

4. Choose 6 people to present the award to.

1.  Out Of The OrthoBox.   I know Ruchi in “real life”.  She’s incredibly sweet and down to earth and her family is lovely.  Her blog is the only Jewish blog I know that brings together Jews of all flavors to openly discuss Orthodox Judaism in a respectful, honest way.

2.  UnPlanned Trip To Holland.   Kelly is a military spouse, an autism mom, and a strong woman who stands up for what she believes in.

3.  Going Insane, Wanna Come?    Rhonda is an autism mom with a 17 year old son (and a neurotypical 15 year old daughter).  It’s really interesting to learn about what life is like on the high school side of the autism journey.  I’m stuck in potty training/ will they ever make friends/ oh come on just learn to DRESS yourself mode, and it’s a treat to read what goes through the mind of a 17 year old with autism and the love his mother has for him.

4.  Yeah.  Good Times.  Jill’s blog has funny cartoons, some swearing, plenty of snark, and pictures of the back of her car.  Her “all kids do that” post series seriously rocks.

5.  That’sRightISaidIt.Dot.Mom  Grace’s Ryan is a bit older than my twins and it’s fun to see where we may be headed in this crazy autism journey.  She’s a single mom so my hat is OFF to her.  My life is hard enough WITH a perfect husband.

6.  Seven YuckMouths and Autism  Lisa’s kids are stinkin adorable.  I’ve learned a lot from her about a particular organization—–  I’ve learned about trust and honesty and standing up for what’s right.

I have about 20 more bloggers I’d like to highlight so I’ll come up with an award for them another time.  For now, it’s 1:00 am and I had an eye doctor appointment today AND a wedding.  I BARELY worked.  I’m so tired.  *yawn*.  g’nite!

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