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

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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Comments on: "Sweating Through a Parking Lot" (3)

  1. mother's helper said:

    You need a support group. Although you have some on-line support, there is nothing like meeting face to face with parents who play the blame game too. I know life is crazy, hectic, one appointment after another, but is it possible to find an hour or two one evening a week?

    You say that you have taken parenting classes and read parenting books, but have you taken special ed parenting classes or read special ed parenting books? Dealing with special ed is a whole different universe.

    Is there some sort of mouth guard available that Fred could wear during circumstances where you can’t restrain him? Typically a modified basket hold with a child’s head pressed to your chest will prevent them from biting or headbutting, while that is something you can use when at home or when it’s just Fred, that isn’t something you would be able to do when Wilma is along for the ride.

    Hang tough, people aren’t questioning your parent skills when it is obvious that your children aren’t typical children. People accept autisim/pdd/nos as a “real” diagnosis. For me, with a child that just has ADHD, my parenting skills were definitely called into question. I cannot tell you how many times I was told “he needs his butt beat,” or my personal favorite “let me have him for a week.”

    • I am in a support group of other Jewish moms with special needs kids. For whatever reason, the majority of Orthodox Jewish special needs kids in our community happen to have down’s syndrome, not ASDs. As you well know, a behavioral disorder is extremely different than a medical disorder. I DO find lots of help at those meetings, but yes, I’m on the waiting list for a support group SPECIFICALLY for families dealing with ASDs.

      Yep, I took a special ed parenting class and have read 6 special ed parenting books so far. I hope to review each of those books (in all my spare time!) in this blog.

      You know Fred—- do you really think he’d wear a mouth guard? If he couldn’t figure out how to remove it himself (which he probably would), he would just scream “take it out” “take it out” over and over and frankly, it would make his behavior worse, not better.

      Sadly, I HAVE been told to spank my children. Just give them a good smack and they’ll mind you! IF I believed in spanking my children, it would make it WORSE, not better. Because THEN I would have kids who don’t respect me and resent me!

      Thanks for being my first comment! *hugs*

  2. mother's helper said:

    You are soooo right about spanking making things worse. And unless you’ve experienced it, you can never understand it.

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