Tag Archives: routines

Uncertainty in autismland

MOST people with autism function best when they have structure.  They do best in a routine.  Ask almost any autism parent what they dislike about school vacations and you’ll probably hear about how the lack of routine sets their kids “off.”  For many, school vacations have to be planned with military precision so that “down time” is limited, and this makes vacations exhausting for parents!  Parents of folks with autism also do best when their kids have a routine (that works!).  If we find a program or a routine that works for our kid WE DON’T MESS WITH IT!

Well, change is coming for my family and I’m feeling some pretty intense anxiety over it.  The program my daughter has been in for NINE of her twelve years is telling us she’s “outgrowing” it, that she needs a placement that will encourage her academically and socially.  She is in a “regular” school, but in a special education classroom, with opportunities for “inclusion” as she’s able.  She goes for inclusion with an aide for art and music (chorus), and just started gym.  In her class she is held up as the example for the other kids for behavior.  If she continues in her current program she will be with other children who DO have behavior issues, and she will continue to be the ONLY girl in her class.  They love her in this program, but they want more for her.  But it’s scary to leave these folks that met her as a barely verbal 3 year old and have helped her become the beautiful friendly 12 year old she is today.

My husband and I have begun exploring new programs for her, and we got a look at the first one today. Some things got me excited for her, some things really scared me.  The reading level of the kids in the class is right where she’s at, and there’s a GIRL!  Woo Hoo!  The teacher explained that they work very hard to provide the girl in the class with opportunities to be with other girls in the school at lunchtime and for inclusion areas.  Girls that are “good” for her, and said she would continue that if our daughter joined them.  She would be THRILLED!  There will probably be 6 kids in the class next year and no one with serious behavior issues.  They do well with only ONE aide!  Amazing!  That’s the exciting part…

BUT… there were scary parts too.  She would have a LOCKER with a combination lock!  Many times she uses two hands for a doorknob, so I’m concerned about her having to twist a combination lock to the precise numbers.  She will enter the school, go to her locker to drop off her coat and lunch, then get to her class in the morning ALONE.  She’s never done that in her whole life.  She’s always been greeted at the bus door by an aide, who has walked her to her class.  Never had a locker.  Scary.  Almost all the kids in this class attend a regular 7th grade math class a few times a week, and my daughter could never do that in a million years.  She’s still trying to master basic addition.  The teacher assured us that that could be worked around so as not to be isolating for her – maybe using that math time to schedule her speech therapy…

We left the meeting and class observation hopeful and concerned at the same time.  I immediately signed a release so that this possible new teacher could speak to her current teacher, so they could assess if my daughter is functioning well enough academically to integrate into this class.  That’s the real issue – we want to challenge her to reach her full potential, but we don’t want to set her up for failure or have her self confidence crushed.

There are two more programs for us to look at before we make a decision about next year, and each have their drawbacks.  The first has NO girls, which is a huge strike against, since that’s one of the issues we’re trying to fix.  In the other her case manager said the children are lower functioning, not even able to participate in state testing (which my daughter is able to do).  So, our options are 1) a program which we would have to make sure isn’t “over” her head, 2) one where she’d be the only girl, and 3) one where she may not be challenged enough.  ugh.

NOW…  I “thought” my husband and I agreed we weren’t going to say a word to our daughter until we had a concrete plan.  That’s why we haven’t talked to her about it yet.  But when she came home from school he spilled the beans that we had gone to this place for a tour and maybe she would go there next year.  WHAT THE EVER-LOVING HELL!!!!!

ARE YOU NEW HERE?????!!!!!!

So the questions have started:

  • So I’m going there?  No.
  • Where am I going?  I don’t know, maybe there, maybe somewhere else, we don’t know yet.
  • Why don’t we know yet?  Because Daddy and I have to look at other places.
  • What other places?  _____, _____, _____.
  • When will we know?  I don’t know because we don’t have appointments yet.
  • Why not?…
  • etc…

Like I said at the beginning, the kids do best when they have structure and routine.  Part of that routine and structure is knowing what to expect.  This uncertainty about next year is hard enough on my husband and myself, for her (who has a distorted sense of time) it’s even worse.  I wish I could say I’ll just push all her questions on him, but he works a lot and I’m the one home so…  I think I’ll have a glass of wine, and think of ways to get back at my husband for the torture this will be for both me and my daughter till it’s resolved.



Any autism parent will tell you what a HUGE deal it is when their child tries a new food.  Any autism parent will tell you what an even “HUGER” deal it is when their child actually LIKES the new food.  I can count on one hand the foods that G will eat without a war.  The staple of her diet is macaroni & cheese.

I know you say “typical” kids can be like this too, and certainly I’ve lived through toddler fussiness with two other kids, but autism is just different.  The rigidness doesn’t go away.  There is usually no talking to a kid with autism about trying ANYTHING new, from a food, to a better way of putting on their pants, or a different way of getting to the mall.  Last year, the town was replacing the sidewalks on a road we take home from school, so the road was closed – G cried EVERY day, BIG tears, almost to meltdown – EVERY day for two weeks until the road was open again.  She was ten years old.  Maybe that gives you some idea…

This week we got G to try a meatball.  This after about a month or so of introducing little bits of meat into spaghetti sauce.  I was prepared for the worst, but hoping for the best.  She likes spaghetti, so I put ONE small meatball in a bunch of sauce and crossed my fingers and said a little prayer.  She took a bite, and made a face like, “I’m not too sure about this,” but she didn’t immediately write it off.  She ate another bite, then finished it and thought for a minute then said, “I like it Mommy.  Can I have some more?”  I wanted to shout Hallelujah but I kept my cool.  Too much excitement focused on her makes her freak out.  But inside?  I was doing a big old happy dance!

So I gave her another meatball, which she promptly ate.  Then I had another idea.  We had some hot dog buns in the fridge, so I suggested making a meatball hoagie for her (hoagie is our local word for “sub” or “grinder” – submarine sandwich).  She balked at that, really complaining for a minute.  But I reminded her that she likes bread & a hot dog bun is bread – that these were two things she liked that we would just be putting together.  Then amazingly she said ok.  And she LOVED it!!  Both C and I were SO proud of her for trying the meatball, and then adapting the hot dog bun to a new use as a hoagie bun.

Then I had a thought that brought me great relief and happiness.  Once in a while for dinner we’ll order out from a hoagie chain called “Subway.”  Now G had ONE thing that she could order from there and be happy.  We can go there as a family now!!  ONE place where we can all find something on the menu we like.  This is amazingly huge.

What’s even better is that G is excited about this too.  She went to school yesterday and told all her friends and teachers how she had tried this new food, and now she could eat at Subway with the family.  She was rightly proud of herself, and we’re proud of her too.

So at some point this weekend I promised her a trip to Subway so that she could order her very own meatball hoagie.   She can’t wait.  Neither can I.

It’s the little things that mean A LOT.  And for people with autism, actually there are no little things.  Every “little” success is a MASSIVE life-changer.  It may just seem like meatballs to you, but for G, and for us, it’s a new menu option, and gives us a new place we can go with her for a special lunch or dinner.  This “little” success also has her feeling so proud of herself, and hubby and I beaming with pride too.  Way to go G!!!