Archive for the ‘community’ Category

The shoes should have been our first clue.

After a perfectly delightful morning —one which began after more than twelve hours’ sleep for Nik and a leisurely breakfast for myself and Niksdad— we began our preparations for a jaunt to the local peach festival, followed by a visit to the park.  The pre-departure routine is always the same: “Okay, buddy, time for some clean pants.  Bring your toy and let’s get clean pants.”  “Clean pants first, then socks, MAFO’s and shoes.”

Nik is always eager to perform this routine; he loves to go out with us.  Lately, he’s begun to put his orthotics on by himself —even getting them on the correct feet.  He was just beginning to clamber onto the sofa, where I sat waiting with wipes and pull-up in hand, when Niksdad brought over his socks, MAFO’s and shoes.  The scream which issued forth from my heretofor sunny child was unlike anything I’ve heard except when he is in extreme and urgent pain.  It was the kind of sound which makes my heart race and causes me to drop everything and come running in an instant, certain I will find my child covered in blood.

There was much wailing and gnashing of teeth (to put it quite mildly) until we figured out the problem: the shoes.  Perfectly good, serviceable Nike’s which Nik has worn on many occasions though not for sometime.  (His other Nike’s were so filthy from repeated outings to the park— the laces were nearly black— that I insistedwe wash them last night; they were still in the laundry closet, slightly damp.)  I put the offending shoes on the floor at my feet while Niksdad went to get the still-damp shoes.  Apparently, even that was too close for those awful shoes; Nik screamed and jumped off the sofa, grabbed the shoes and ran to the entertainment center to put them on top.  That’s were they’ve been sitting for weeks now; it made perfect sense to Nik’s sense of order.

Once Nik realized the “correct” shoes were going on his feet he calmed down.  In fact, he seemed quite eager for our outing.  Off we went on our merry way.  “We’re going to get ice cream first, then go to the park. Ok buddy?  Ice cream first, then park.”  I repeated that phrase, like a mantra, as we drove.  Nik is usually pretty good about changed routines or routes as long as I tell him the sequence several times over.

I should have known that the shoe incident had my precious boy already wound too tightly.  As soon as I turned right at a traffic light where we normally turn left, Nik’s tenuous balance shifted and the tempest began.  I talked to him in soothing tones as I drove.  “It’s ok, sweetie, we’re going to get ice cream first then go to the park, remember?  It’s ok.  You’re ok.”  All the while, Niksdad held on to Nik’s feet so he couldn’t injur himself (or us) with his kicking.  I drove with one hand on the steering wheel and one hand holding Nik’s sweaty fingers, gently squeezing to give him some proprioceptive input which I hoped would calm him.

We parked right next to the entrance (God bless our disabled parking placard!) and waited for the storm to abate.  When Nik didn’t seem to show signs of calming, Niksdad said tersely, “This isn’t going to work, let’s just skip it.”  His frustration level was, understandably, rising with each howl and each kick which landed on the back of his seat.  Not realizing that Nik was already overwrought and wound too tightly, I insisted we at least get out of the car and try

There have been times when simply getting out of the car has shifted Nik’s attention enough that he is able to calm down and we end up having a decent outing.  I also felt very strongly that we neededI needed— to not be held hostage to the autism.  We spent the first two years of Nik’s life sequestered away from everyone and everything because we had to protect Nik’s fragile immune system.  We’ve spent much of the last couple years isolated from nearly everyone and everything except the occasional family outing.  At some point, I felt, we just have to say “Damn the consequences!” and try —just try— to be a part of the very society in which we want our boy to thrive.

Today was not the day for that.

We never made it to the ice cream or the petting zoo.  We pulled into the parking lot at the park and Nik fell apart again.  By this time, he was so overwrought he couldn’t tell us anything.  “Are you hungry?” Nik signed please so we offered him a bite of his sandwich; he thrust it at me and screamed.  “Do you want to go play in the park, sweetie?”  He simultaneously signed please and shook his head no.  I started to hum Mary Poppins songs to calm him.  It seemed to work until I stopped.  The wailing began again.

We drove home to nurse our wounded hearts and try to figure out what our boy was telling us, what he needed.  As we pulled into the driveway —like magic— the tears and tantrums abated and the happy singing began.


Nik has now had lunch and is a very happy camper —singing Mary Poppins and Signing Time songs to his toys, playing with his alphabet puzzles.  We may attempt the outing again in a while —or not.

It’s so hard, trying to find the right balance between stretching Nik’s boundaries and honoring his needs.  Between giving my child what he needs and giving myself what I need.  Trusting my instincts and listening to the voice in my heart that says “We have to try…”  The lines are hazy and constantly shifting —like walking on a sand dune in a headwind. 

I believe we are at a crucial point in Nik’s communication development:  the more he knows he can make himself understood —and the fewer tantrums as a result of that success, the more intensely frustrated he becomes in those instances where he cannot make himself understood.  The extremes seem to be farther apart and I feel stretched to my limits straddling the chasm.  But I’ll write more about that another time —after I mull it over some more.

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Today being Earth Day I’ll bet you’re expecting a post about that, right? Well, you’d be mistaken. Sorry. Nope, today I am off to a quarterly meeting of the Inter Agency Coordinating Council for my state’s birth to three/early intervention programs . It’s one of those large bodies which meets every three months to discuss the state of early intervention services from every conceivable angle —and believe me when I tell you there are angles I never even imagined existed!

But more important than the mere fact of my attending this meeting, what I really want to share with you is the fact that I am attending. You see, since we took Nik out of school in the fall, I have missed the last two meetings because I couldn’t find appropriate child care and I couldn’t take him to the meeting. I mean, sure he’s cute and all but he is also extremely high maintenance and would be a complete disruption to the very vital work of group.

It sure makes it tough when parents of special children can’t find meaningful ways to contribute to our communities all for want of appropriate care for our kids. I really thought I was going to have to resign from my three-year term; we aren’t planning on putting Nik back into school in the foreseeable future and Niksdad’s school schedule precludes him from staying with Nik. Nik’s medical needs, while certainly not as onerous as they once were, are still great enough that he would require a licensed nurse to provide care. There is a special day care where I could pay to leave him for the day but I am not comfortable leaving him somewhere for an entire day without knowing who is taking care of him and what they are capable of handling should the need arise. Nor do I want to be across town in case of an emergency.

When I brought my concerns to the executive committee of the council, I truly expected to hear “Gee, we’re really sorry, Niksmom. We hate to lose you but we understand.” What I actually heard instead was “Gee, we’re really sorry Niksmom. We had no idea that we were making it so difficult for valued members to participate. How can we support you to feel like your son is well cared for while still close at hand and you are able to participate fully?” I was completely stunned.

After all these years of feeling so isolated —first because of Nik’s medical needs which dictated extremely limited contact with others for two years, then because of the frustrations of trying to find our place in this world of “normal” which doesn’t seem to quite fit most days —well, you can understand the relief and gratitude I felt. It didn’t even matter to me if we couldn’t find a solution; what mattered was the effort.

The effort paid off richly. I am soon going to be loading Nik and a metric ton of his gear into the car and taking him with me to what will be the first of our quarterly meetings together. The state birth to three organization director has rented an extra room in the building and my friend S —who knows Nik well, is going to entertain and occupy my little tornado just down the hall. I can slip in and out of the meeting to start Nik’s tube feeding and give him meds, I will be close at hand if he completely falls apart for some reason, and I am comfortable with the whole set up.

If only the rest of the world were so understanding, so aware of what we parents of our special children have to offer.

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If there is a load you have to bear
That you can’t carry
I’m right up the road
I’ll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you’d understand
We all need somebody to lean on

Lean on me when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
Till I’m gonna need
Somebody to lean on

“Lean on Me” ~ Bill Withers

Photo courtesy of Treklens.com

I am overwhelmed with the outpouring of offers of specific, tangible support I am getting from people in response to this post. It is humbling and heart warming. My knee-jerk reaction is to graciously say, “Oh thank you so much but I really couldn’t impose.” Yet, all my life, I have longed for the kind of community which is now rallying around me; I would be stupid —and a jerk— to turn it away.

My upbringing was such that I was admonished never to make a nuisance of myself. It certainly was not acceptable to burden others with my needs and any request I might make was sure to be an imposition. Accepting help from others is not easy for me; I have always been the listener, the advisor, the fixer of broken things and solver of problems. I even managed to make a profession out of it.

I once managed to find the laptop an old boss thought had been stolen off a plane in Chicago en route to Switzerland. He needed everything on it replicated for a meeting he was scheduled to have 36 hours later. I got him the new computer in the nick of time —data and all (thank God for corporate system-wide backups!). I also managed to have his old laptop in my possession the same day. Oops, he had (I suspect had too much to drink and) “forgotten” it when he changed planes in Chicago. A very savvy flight attendant picked it up and secured it in his locker until his next shift so he could turn it in. I sent him a lovely thank you gift from my boss.

I tell that story not to boast —though it was one of my more challenging feats (for the same boss whose family I relocated from Norway and whom I took for a driver’s license test after he broke his shoulder skiing in Canada. It was great preparation for motherhood, I must say). It simply illustrates the degree to which I have had to be self sufficient. I have had to work hard to earn the respect of coworkers who thought I was too young or inexperienced to handle the level of responsibility I was given.

I don’t let myself fall very often so when I do I usually do it quite spectacularly. The world comes crashing down around me and everything grinds to an abrupt halt. Well, it used to in my time BN —before Nik. Now I realize that I need to simply reach a hand up through the quicksand and, even if I can’t see the face it goes with, hold on and accept the hand up. It’s still difficult for me not to feel like I am imposing on others’ good will but I am practicing.
All the moms —and dads— who have reached out to me so often have made it safe for me to not think I have to be be Super Mom or Woman of the Year. You give me a comfort zone in which I can practice asking for —and actually accepting— help. That is a gift I did not expect to find in this arena. But it is one I treasure greatly.
The more I accept the more I have to give.

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