Monthly Archives: January 2013

One Step Back, After the Two Steps Forward

The saying “Two Steps Forward, One Step Back” is a lot more fun on the Forward days.   Sunday and Monday were the forward days.   Unfortunately Tuesday was a Step Back.  School changed semesters last week, and instead of having three days a week at one, known and understood job placement – J. now attends three different jobs, with very different environments and expectations.   Not only the days of the week are rearranged, as to when he attends class versus vocational settings -he’s being asked every day, all day long, to meet novel expectations.

For J., coping with stress means making nonfunctional vocalization, fidgeting in usually unacceptable ways like adjusting his “package” and gently slapping his leg almost as if the rhythm soothes him.   For some reason W. seems unaffected by the semester change, although his Tuesday wasn’t exactly a banner day either.   Stepping out in front of a car in the parking lot of a school trip to purchase items at the grocery store for cooking class doesn’t exactly impress the teachers.

To further complicate matters, tonight J. starts a special needs soccer class – totally Mom’s idea and interest, not his.  As a result the Wednesday after school and evening schedule will further change.  And, for three nights in a row, Tuesday -Wednesday – Thursday -family dinner will be at 7:30 or 8 pm, sometimes later.

And we skipped over Mom’s own minor little traumas, like my perpetual inability to set limits on my work load and work ‘friends,’ or constantly skipping over self care matters like my back strengthening exercises, and my humorous but not really need to top the Personal column of my voluminous daily To Do list by the word Hygiene (my code word for Take a Shower, Stupid) so that I actually get around to it.

The alarm just rang, so it’s time to rouse the sleeping husband and zip off to the usual Action Item litany where I stuff 10 pounds of living  into a 5-pound bag.   But as J. just shut off the alarm and started his routine, I’m chastened by the wisdom of Facebook – did I just type that? 🙂 – that after a day that’s a gigantic #FAIL, the best and ONLY thing to do is get some rest, and get back at it again.

Here’s to being back at it -and making today the first of those Two Steps Forward.


Growing, Each Day

My kids – your kids – all kids grow every day, no matter how big the leap.  That includes forever kids like W. and J. whose developmental age of maybe 5 years old on a good day belies their 18-year old bodies.

Yesterday was not a special day, really.   We let the boys sleep late (Mom actually slept late, which was amazing), went to late Mass, and did neglected chores like putting away the Xmas ornaments.  We did treat the boys to their favorite “restaurant” (Chipotle, where W. inhaled a wrap before I got to my seat – truly).  And we did the usual drive-around errands of the grocery store, a few other stores and the bank where the boys basically tag along with us and practice behaving in lines and in public.  We made dinner at home, quite a fabulous one cooked by Dad, folded clothes and readied for the week.

Buried in the ordinary were milestones, and I hold them in front of me to guide me today:

-W. zipped out of church door far ahead of us, got in line and independently shook the priest’s hand, saying “Hi Father.”  Without prompting!  and without parents to guide him!

– J. painted 2 sides of his favorite craft boxes using side-to-side, “cover up all the white space” strokes and not the stimmy circles he does when he’s simply calming himself.

– W. spent between 4 pm and 8 pm playing 4 different preferred activities – his word cards, puzzles on his iPad,  puzzles and iTunes on his computer, and money in his cash register – without a disrobe and without hyper-vigilance on the part of Mom and Dad – so the parents could do other chores around the house.  OK, some of his play was stimmy, but it was so delightful not to have to run and chase him all the time to make sure he was behaving appropriately.

– J. independently awoke to the alarm clock and shut it off each day – just like we’ve been practicing for about 3 months.  He even proved he is no different than any typical teen, when he hit the snooze bar and promptly went back to bed. 🙂

Growth is about progress, not perfection – about the unending journey to better ourselves, one step at a time – however small.   W. and J. are growing, and for that my day is all sunshine today, inside and out.  Here’s hoping this Mom can do the same.


IEP meetings – ugh.

Is there any phrase for special needs parents with such immediate emotional impact as IEP meeting? Merely breathe it to “special parents” and we enter the zone of mutual knowing – that no matter how the meeting concludes, parents emerge with frustration and amazement that assembling so many highly educated people in one room inevitably leads to displays of sheer stupidity.

After 15 years of IEP meetings you’d think I’d know better.  For the first time this year I fully rejected the drafted IEP as required by a new town liaison who insisted that any word changed to the document once we left the team meeting required a fully new team meeting.  (however it was OK for the OTs and SL/Ps to reword what they drafted in the document sent to me for signature, though.  So I guess the rules apply only to we “lesser” members of the team of equals, i.e. parents).  I had our 2nd team meeting as required a few days ago, and while I did emerge with about 80% of what I wanted, the display of lack of knowledge of my son after 2 years – and commitment to trying something new that might work – was sad, puzzling and downright irritating.

“Individualized” is the first word in Individualized Education Program (IEP).  Yet the lack of interest from SL/Ps and OTs to genuinely individualize a program cuts across just about every school my sons have attended.  This school, in particular, appears to hide behind statements of “we tried and he can’t ___.”   Yet when you ask specifically what they tried, in an attempt to understand or frame a new approach, answers were vague.  I ask, “Did you help him understand the (noun) or the (action verb) by using Meyer-Johnson picture symbols?  “Oh we always have symbols in the room.” – OK, but you didn’t answer the question.  Did you present them to him, and how – or was he supposed to go them for himself ?

Here’s another one. “When we point to the (noun) on the shelf and ask him to put it away, he can’t do that.”  I ask, “So when that happens what do you do?  “We point and walk him over to show what it is.”  I ask again, “Did you use the picture symbols, or look at perhaps whether he doesn’t understand either the noun, or the verb?”   The answer came back,  “Oh we have picture symbols all of the place.”  I ask, well, how do you present them – is it in a size of visual field he can understand, is the symbol photographic or illustrative, what was happening at the time, did you try to simplify or explain the task?”  Dead silence.

Hello, professionals?  You work at a SCHOOL.   Your job is to TEACH.  Your consultative time on my child’s behalf is meant to FRAME APPROACHES.   Your direct service time is meant to PROVIDE INDIVIDUAL THERAPY, not so the same old thing you’ve done for 2 years that didn’t work,or tasks you’ve developed for other students –  then tell me “He can’t.”

And thank you also for sharing that you, too, own an iPad, with the same programs my son uses at home.  But when I pay for his outside speech therapist to show you what she’s doing my child, and you reject the suggestion, even though you crow about how you own an iPad  and are happy to try the existing screens and software you have developed for others – you are proving yourself guilty of the #1 error of your field – failing to MEET THE STUDENT WHERE THEY ARE AT.  Isn’t this the definition of “Individualized”?

I’m not sure if these professionals have noticed, but I begin each meeting by thanking them for their interest and concern in my son – and I mean that.   And I end each meeting remarking on a recent achievement.  It’s my way of saying that while my sons are profoundly autistic, they make progress, Mr./Ms. Professional – even if the pace is slow, and uniquely their own.

And you, the professional who is not really helping, you are in for the most tactful, clear, and insistent PITA (Pain In the Ass) you’ve ever met.


Going Residential – It’s Happening for Others

Ran into a lovely parent I’ve known for years yesterday as my sons were on their usual Friday purchase-pizza practice.  (their reward for volunteering at the public library).
She mentioned that her son, just days younger than my sons, has been in a residential placement since last fall.

Wow.  That’s all I can say.  I haven’t gotten done processing it.  He’s only the 2nd peer I’ve known to go residential right now – the other child unfortunately hit a troubled, violent patch with his mom where there was no other choice.  Interestingly this boy was someone I’d always considered much higher functioning than mine – more social, more engaged, with different but (I guess to me) less problematic behaviors.

It’s happening – the autism generation, that blip on the charts where there are so many kids with autism, are starting to move out of the family home and onward to their next destinations.  I have lots of feelings on the topic. Too many to process in the few remaining moments before it’s time for showers and pre-speech therapy activities to start.

When do we know when – when is best – and how do we as parents do that real letting go
that comes with fleeing the nest?

And how can we ever trust that their next nest is as loving, supporting and appropriate as
the one I so carefully build and cultivate for them?


Too Much Good Stuff, Overflowing

Cake overflowingHere’s the perfect visual metaphor for my life – a cake so brimming with goodness that it overflows, browns too fast, blackens the oven and nearly sets off the smoke alarm – yet creates sweetness that lingers.

Too many ingredients- too many stories to tell – too little time!  The above photo was from 10 days ago, before we entered yet another rapid-rise period where too much had to be done at once.  The boys started back to school, J. developed some lovely new bad behaviors we had to immediately address – entire rolls of toilet paper don’t flush well and tend to flood ceilings – and we readied the typically developing now 21-year old sister for a semester abroad.  There were the usual Saturday morning cakes to bake so J. could practice his bakery-related vocabulary words with his speech therapist (scrape, middle, edge, side, clean and dirty).   There were naked man episodes where despite our drafty old house W. persists in bolting and getting naked when he’s bored – thankfully in the bathroom or his bedroom now.  There were malfunctioning appliances just when you needed them most (washers that don’t spin, driers that don’t dry), last-minute daughter logistics to supervise – and a rerun of “Taken” to watch two nights before the trip abroad, just so we parents could further terrorize ourselves.  Finally one Monday morning we put the boys on the school bus, the daughter on the plane, and it was back to semi-normalcy – whatever that is.

That night I did the unthinkable and watched dumb TV for an hour after our real New Year began.  It’s been a week and I still need more time to decompress and digest it all.   Yet that’s hardly doable  – between starting new helpers in working with the boys, knocking heads with the school district over IEPs, juggling the usual respite worker cancellations and oh yeah, running a business on the side.  Aren’t our lives always like that, with autism.

As my 18-year olds W. and J. travel to adulthood, their mom journeys toward a New Year of greater balance and focus, where the batter suits the size of the cake pan.  Maybe.  Sort of.  Hopefully.  Seriously.  Really?


Celebrating 2012- As the Path to 2013

I’m a sucker for New Year’s retrospectives and goal-setting – on behalf of my autistic kids and myself. The obsessive list maker in me loves the scrawled “what did we accomplish” and “where have we yet to go” lineups in my old fashioned paper journal. Somehow the naked reality of a little word on a tally of hopes turns a dream into a stepping stone on the foot path to reality – however small.

Yet Age 22 looms ever larger ahead of W. and J. -that vaunted time when the happy school bus doesn’t beep-beep in the driveway any more in our state, and the officially adult disabled life path begins. It’s a scary thought. Just yesterday I asked a trusted babysitter about her soon to be age-22 brother and how her family felt about the impending transition. Her answer was sobering indeed.

I want 2013 to be filled with so much for W and J. Truly each one made nice gains in self care and communications realms. J’s overcoming his fear of a shower so that he now prefers one over a tub bath starts each morning with a smile for me. And W’s ability to state his needs, even by standing up at a restaurant when he wants to leave or whacking me in the head when I’m not paying attention to him – literally – is the voice of a young man saying “I’m here – look at me” – however inelegant.

But we have so vastly much more to go on the journey to adult living and working. As always with their functioning level I feel like I’m bailing out the ocean with a thimble. Or, in the more appropriate metaphor, the mountain is so far away and winter winds of naysaying teachers and state services gatekeepers so harsh, that I worry we will never summit. Instead will we forever journey, always upward yet never much beyond – always hard and never fulfilled?

There’s no perfect answer here, only New Years faith that each of us, even the profoundly autistic, has beauty within – destiny beyond – and fortitude enough to keep building that path so we are ever closer to the sky.