Musings from an Orthodox Jewish mom of twins with Autism Spectrum Disorders, ADHD, and one twin has encopresis, megacolon, and a cecostomy. I'm tired. :)

Archive for the ‘Parking Lots’ 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.


Sweating Through a Parking Lot

Everytime I take my kids by myself somewhere, I have to plan ahead.  Will Wilma flop down in the middle of the parking lot and refuse to walk?  If I’m alone with her I can pick her up.  But if Fred is with us he can not simply hold my hand and walk nicely while I carry his 45 pound sister.  When she pulls this, he immediately bites me.  EVERY time. It’s impossible to hold his hand while he bites me.  I no longer have a double stroller which fits in my tiny car.  I have a great double stroller to use for walks around the neighborhood, but for car trips I typically depend on going places where we quickly walk through a parking lot, go in, and the kids get absorbed in whatever is inside (toys in the doctor’s office, books and toys at the library, the fun at daycamp).  I did recently get a larger size single stroller for Wilma for trips to the hospital where there is lots of walking (we recently did an EEG, an MRI, the neurologist, and other fun stuff at the main campus of our hospital which is not friendly to a hypotonic 4 year old on the spectrum), or for the mall if I EVER venture to try that with the kids by myself again (not bloodly likely).  I CAN take the kids to target, walmart, and the grocery store— they LOVE to ride in the cart.  But at 40 and 45 pounds, once I have the kids in the cart I have no room for groceries.  But that’s ok because with the kids in the car seats in the back, and a mountain of stuff in the trunk I haven’t had time to clear out (more in another post on why I have no time), there’s no room in the car for STUFF anyway.  When I take the kids to walmart or target it’s to get a couple of items (usually diapers– more on the evil topic of potty training in a future post), but mainly to get OUT of the house.  Staying home with both of them all day is a challenge to say the least of the matter.  But going anywhere with them that isn’t target, walmart, or the grocery store is also a severe challenge.  I’d given up on the mall, and I’m about to give up on the library too.  More on the playground in a future post….

You know how you sometimes see a mom with neurotypical kids walking through a parking lot and her two, three, or even five or six kids are just walking next to her or holding her hand and the act of getting from point A to point B just seems to be no big deal?  I get that every now and then and today, TWICE, I did— I was thrilled.  But then there are days like yesterday.    I took them by myself to orientation for a camp program they’ll be starting on Thursday (their main special needs daycamp program will be ending, and they’ll be doing a seven day program specifically for kids with autism).  So I get to a large parking lot in front of a large building and I’m not sure exactly which door to go into—- I’m sensing trouble— the last time this happen I ended up with six welts on my arm and I was covered in sweat within three minutes.  By the grace of God, both kids happily walked holding my hands from the car into the building!  And when I asked someone where to go, they happily followed me!  WOW!  This might be a great experience!  They enjoyed the orientation, playing with the toys, meeting their teachers, etc etc and then…. it was time to leave.  I had such a great experience walking IN with them that it just didn’t occur to me to worry about leaving.  It’s always when I’m on a high and NOT expecting trouble……

Wilma refuses to leave.  She flops down on the ground, kicks her feet, flails her arms and I calmly ask her to get up approximately 17 times because I know I can’t carry her to the parking lot because Fred will then bite me.  While I’m calmly asking her to get up, he bites me anyway.  I calm him down while she runs off.  I gather her and she actually starts walking.  We pass an entire class of kids their age– neurotypical kids all lined up nicely at the door waiting for their parents to pick them up (there is a “regular” camp group that meets in the building).  I’ve got sweat dripping down my face but no hands to wipe it because if I let go of her for a second, she’ll run.  If she runs, he’ll bite me.  The teachers are watching me.  We get out the door.  She flops down again.  Again, I tug at her arm, gently enough so it doesn’t leave it’s socket, but firmly enough that she gets that I will NOT be carrying her and I will NOT be letting go of her hand.  He bites me again.  I calm him down again.  Now my entire face is covered in sweat.  THIS is when a friend of mine comes towards the building— her daughter is in the camp group we just passed, and she’s there to pick her up.  Her kids (all 87 of them—- ok, I think 6) are neurotypical.  One of her kids is my kids age and has been toilet trained now for approximately thirty seven years (I have a few insecurities about the fact that I CANNOT toilet train my children- more in a future post!).  In her mind, she’s thinking— oh, it’s nice to see you– your kids are getting so big– have a great day!  In MY insecure mind, she’s thinking—- oh wow, one kid screaming and flopping, one kid biting, what is going ON with her parenting skills?  Meanwhile I’ve taken a lot of parenting classes and have read a lot of parent books and am amazed that my twins’ behavior continues to stump me so much.  God has blessed me with these children to teach me lessons about patience and behavior management.

Hoping for more than two days in a row when I can make it through a parking lot without being covered in sweat and bite marks.

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