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

…. with my children…. without help.

It was an innocent thought.  Three days in a row of no television, ipad, computer, telephone, or car…..  there are only so many hours we can play with the same books and toys, right?  So let’s take a walk!

For the past many years I’ve always done it whenever there’s been a Shabbos (Sabbath) or Yom Tov (Jewish holiday) with nice weather.  For a one day span, Shabbos, we’re able to stay home without too much trouble— if we get invited out for a lunch meal, my husband comes home to help get the kids to where we’re going.  But for three days in a row— this year two days of Rosh HaShanah backed up into Shabbos and soon two days of Sukkos will back up into Shabbos and then Shimini Atzeres/ Simchas Torah will back up into Shabbos…… picture an autistic kid with no access to an ipad or a computer game or anything with buttons for one day (or playdoh, or crayons)— now multiply it by three days— now multiply it by two children— we need a walk!

I had already crossed library, playground, and a bunch of other fun places off the list I can physically take my children by myself without someone getting bitten, kicked, hit, or tackled.  But I was still willing, until yesterday, to pile them into the double stroller (which really doesn’t fit my almost 5 year olds) and walk on.  Go without the stroller?  No, I know better than that.  Wilma flops down on the sidewalk five streets from home and refuses to get up.  That causes Fred to step on her, scream, and bite her.  So…. yes, they’re able to walk for a bit as long as I have the stroller with me.  As soon as she melts the teeniest bit, I pick her up, put her in the stroller, and walk on.  Until yesterday.  The kids have outsmarted me.  I can no longer physically put her in the stroller and lock her into the seatbelt with one hand while keeping him from biting her with the other hand.  Because the stroller really doesn’t fit, it takes both my hands and a ton of strength to slam her into the seat and get the seatbelt on her (with no seatbelt, she melts face down to the sidewalk screaming– she WILL. NOT. WALK.  when she’s in meltdown mode).   I can do that when I’m alone with her.  But while he is in multi-bite mode (which is ONLY caused lately by her meltdowns), I literally don’t have enough hands.

So picture us a few streets from home in the middle of a lovely walk where I’ve just told Wilma, no she may NOT go into the synagogue.  Meltdown.  (they behave BEAUTIFULLY until they don’t and I can’t predict how quickly or intensely it’s coming).  I calmly wait it out while she is facedown on the sidewalk and I’ve locked him into the stroller to prevent him from biting her.  So far so good.  Until she doesn’t get up.  And keeps screaming.  And bothering people in nearby homes.  And the synagogue.  And neighboring synagogues.  And neighboring countries.  So I attempt to lift her into the stroller.  I can’t do it because he turns around to bite her.  If I take him out of the stroller, he’ll run into the street.  So I hold her for a minute, try to talk him down and try again.  And again.  The more I try to shovel her 45 pound limp screaming body into the stroller, the more he tries to bite her.

By now, here comes everyone.  The old men at the synagogue door opening the door every 30 seconds to stare at me.  That’s truly helpful.  The lady who comes by to tell me “you can’t handle those two by yourself— you need help!”.  I said “thank you for reminding me of that”.    We were offered candy approximately fifteen times.  Sure— my kids are in the middle of a massive meltdown– you think my parenting style should be to reward it with candy?  So with one hand I’m locking Wilma into her seat— with the other hand I’m trying to keep Fred from biting a friend of mine who thankfully came along and WAS a big help.  With the third hand I’m thanking but waving away all the candy offers.  Once both kids were in seatbelts I TRIED to move the stroller.  I couldn’t.  Wilma’s feet were firmly planted on the ground.  She was standing up while in her five point harness.  I tried to move her feet— Fred bit her again (some of the bite marks on her neck and back are minor and some are all sorts of fun colors).  At this point my friend sent a boy into the men’s section at the synagogue to grab my husband, and I, defeated and relieved, burst into tears.  Enough, I had it.  He was strong enough to keep the stroller moving depsite her feet and his teeth and while the stroller was moving they both calmed down.  He dumped them in the house, went back to synagogue and I could say at least I TRIED to spend time with my kids alone without a car outside the house.  Never again.  For Yom Kippur I’m getting a babysitter to help me take them for a walk in two separate strollers— or if I don’t buy another single stroller by then, to help me walk the one who’s willing to walk, far away from the one who’s being pushed.   My friends who have six, seven, eight or nine neurotypical kids don’t hire babysitters.  Me, I’ve got two kids and I can’t leave the house without a helper.  It’s not fair.

To make this week even better, I finally got the official paperwork denying SSI.  I knew we weren’t going to get it— we don’t get anything— we “make too much money” for free health insurance or WIC or food stamps or anything like that that everyone knows we’re having financial trouble because I don’t have enough time to work many hours keeps telling us to apply for (great sentence but I don’t care– it’s my blog and I can be grammatically incorrect if I wanna)…….   but I was kind of hoping that we had a shot at SSI.  Nope—- THOSE hours of paperwork are now wasted and I’m back to turning my whole life upside down for kids who aren’t potty trained, aren’t in school a full day, need lots of individualized appointments and therapies, AND I don’t have time to work enough hours to provide what we need because their school hours overlap for eight hours a week.

In short, if you see me,

don’t tell me to apply for WIC, food stamps, medicaid, or SSI.  I did and was denied.  Didn’t even WANT to apply, but did anyway.

The Ten Commandments, In SVG

Image via Wikipedia

don’t tell me I need more help.  I KNOW THAT.

don’t tell me I need a vacation.  I know that too.  Got a qualified babysitter and some money for me?  Now we’re talking.

don’t offer us candy.  EVER.  If my kids deserve candy once in a blue moon, I’ll be the one to decide when and it WON’T be mid meltdown.

don’t tell me that since I can’t handle my kids I should send one to an institution.  I’m doing the best I can.

 

And I’ll never take a walk with them alone again.  ok?

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Comments on: "I Promise Not To Take a A Walk Again…." (4)

  1. Mother's Helper said:

    Appeal appeal appeal! They almost always deny the first time around. If you have to get an atty, they don’t charge unless you get it, but they will help with the paperwork and filing and follow-up.

  2. (hugs!!!) I wanted to laugh and cry for you all in the same post.

  3. Wow first of all I applaud you because we can’t live without an Isomething for more then 5 minutes. I once tried to take my one autistic/Cp kiddo and her so called “typical brother” to sea world by myself. People looked at me like I was insane and I surely was! Your experience sounds doubly intense! We do a ton of things that other moms wouldn’t or couldn’t do then there are those things that they can do and we can’t. Just going to the park alone is on that list for me. I feel your pain sista!

  4. we do a ton of things that other moms wouldn’t or couldn’t do…… hmm, you mean like clean poop off the wall? yeah, been there, done that. 🙂

    going to the park alone— NOT gonna happen.

    well this morning I got Wilma a prescription for a wheelchair/ special needs pushchair. She is now 54 pounds. Her stroller goes to 55 pounds. Most normal strollers do. Last week at the psychiatrist (GREAT place for this to happen!)—- she had SUCH a meltdown that she flopped over to the ground IN THE STROLLER and flailed around on the ground wearing the stroller like a backpack. Time for something super sturdy. Once I have said super sturdy item that can truly restrain her when she flops and refuses to move, I MIGHT be able to take walks with both kids again now that they’re both on abilify. He CAN walk. He refuses to once he realizes we have a double stroller…. but I think if we JUST take a wheelchair for Wilma and get rid of the double stroller and gradually work him into longer and longer walks by bribing him……..

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