School Daze, School Daze

I thought I’d better check in and give an update on the school situation before time slips away and my already overloaded brain forgets …that’s a small window of time these days!

Let’s see, we’ve found out that —for right now— we cannot pull Nik out of school and get his therapies covered by Medicaid. On the surface, that really sucks; but there’s a glimmer of silver in this cloud somewhere. I’ve been having lots of conversations with lots of people who have volunteered to help us.

One is the “high muckity-muck” from Medicaid who is responsible for authorizations and works right under the Medical Director. She also happens to be the person who was Nik’s first case manager when we moved to DE in 2005; she has more than a passing acquaintance with Nik’s case. She basically told me that the school needs to step up and deliver the necessary services. We need to go through the IEP meeting and then look at what school hasn’t delivered on and whether Medicaid can bridge the gaps. A prime example would be feeding therapy; school does not do this so Medicaid will automatically approve it. (Um, wouldn’t it have been wonderful if the SLP at school had bothered to mention this like, oh I don’t know —A YEAR AGO so we could have done something about it sooner?!) But…Ms. Muckity-Muck has agreed to come to the IEP meeting to help do a little pushing back on the “Oh, no, that’s medical not educational” bull that’s been shoveled at us for the past year.

Did I mention that Ms. D —the world’s greatest OT —is also coming to the IEP? She’s basically going to tell the IEP team exactly what she sees and the amazing progress Nik is making with the right level of services. (He currently gets a total of 2 hours per week in 30 minute sessions.) She said to me today, “You know, Nik is so smart that if we can just get past all this sensory junk he’s got going on, he could really take off!” Did I mention we think she’s terrific? (She even called us tonight to give us some tips to help Nik after surgery tomorrow! Never would have gotten that from school, for sure!)

So let’s see…Duck #1 (Medicaid); check. Duck #2 (OT); check. Duck #3 just happens to be one of the most highly respected women in the local and state-level disability advocacy circles —and a woman I’ve know casually (very) for two years; she thinks Nik is a living doll, too. She’s the one I mentioned in my other post (I think?) who is an educational advocate for kids in the child welfare services system. Been playing this game for many years. She’s given us some good coaching so far. She will be at Nik’s IEP.

Finally, Duck #4 — the one we will keep in reserve in case we really need her — a legal aid attorney who does — ta da! —special education work. We haven’t made contact with her yet but she is a friend of a friend so we have an “in” with her when we need it.

So, while we aren’t thrilled with the idea of Nik having to be in school, we have greater hope that school will either deliver the goods directly or they will be backed up against that old proverbial wall and will have to provide funding for additional services.

I’ve been thinking a lot about some of the suggestions that commenters made on my recent post —especially about reduced hours. Since we still have the OT and PT authorization for a set number of sessions through early November —I checked it with Ms. Muckity Muck just to be sure —we are scheduling sessions two days each week in the early afternoon. This means I will take Nik out of school just before lunch, take him home to feed him, then go to see our beloved Ms. D and Ms. T. That leaves us a reasonable window of time to be able to go to the park, or my sister’s pool while the weather is warm enough, before Nik has to be home for dinner.

I am sure school is going to have a complete cow about this but I plan on pushing for that to be his daily schedule —leaving school at 11:30 each day. They’ve already lengthened the school day by 20 minutes on each end —making it a 6 hour 40 minute day. The change is just enough that it may impact Nik’s overall feeding and sleep schedule. He already doesn’t nap consistently at school —too much sensory input to be able to tune it out and relax —so his bed time ends up being earlier than “normal.” I won’t get into the whole complicated schedule we have to keep —what with meds before meals, meds with meals, separating one seizure med from the other, etc. Suffice to say, a seemingly small shift can have a domino effect that can have undesirable results. When Nik’s seizure meds are given too close together he is like a drunken sailor for hours afterward and is very lethargic and unresponsive in terms of interacting with other people or his environment. Great way to send a kid to school, eh?

Never mind the fact that he is 3 1/2 and shouldn’t be “parked” in a seat for the better part of the school day because they do not have sufficient staffing levels to handle his needs!

Anyway, I am rambling now but the gist is this — Niksdad and I feel like we are pulling together a more concrete plan and have some more objective eyes than ours watching over the process. We hope that they can help us prevail in getting Nik what he needs.

I forget which one of you said it, maybe Joey’s mom, about squeaking loudly enough to get the grease. That’ll be us.

May we make the Tin Man sound like an amateur.

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A Tale of Two Friends…Silver, Gold, and…

Around the corner I have a friend,
In this great city that has no end;
Yet days go by, and weeks rush on,
And before I know it a year is gone,
And I never see my old friend’s face,
For life is a swift and terrible race.
He knows I like him just as well
As in the days when I rang his bell
And he rang mine. We were younger then,
And now we are busy, tired men:
Tired with playing a foolish game,
Tired with trying to make a name.
“Tomorrow,” I say, “I will call on Jim,
Just to show I am thinking of him.”
But tomorrow comes – and tomorrow goes,
And the distance between us grows and grows.
Around the corner! – yet miles away . .
“Here’s the telegram, Sir. . .
‘Jim died today’.”
And that’s what we get, and deserve in the end:
Around the corner, a vanished friend.
- by Charles Hanson Towne

I am brought to mind of a recent post by Her Bad Mother about the loss of a friendship . While I have not lost friends because of my blogging (hell, most don’t even know I do it!), I have allowed our relationships to wither and evaporate , caught up in the frenzy of this “swift and terrible race.” I am incredibly grateful then to have some friends who don’t write me off if they haven’t heard from me in a year (or more, I am embarrassed to confess). One in particular is on my mind today —my dear, dear friend Calvin (not her real name).

Our lives have diverged, like those paths in Robert Frost’s snowy woods. Not out of choice exactly —though one could certainly argue that the choices one makes inevitably lead to one’s circumstance. Rather, in an odd way, because of our respect for one another’s circumstances. I know, it sounds silly, right? But hear me out.

How wonderful is the friend who, knowing you are going through your own struggles —mine being the raising of a medically fragile child with significant developmental challenges and all that it encompasses —chooses not to burden her friend with her own brand of hell —which, being mindful of respecting her privacy, I can only say is no less awful just very, very different from mine. Our paths have diverged so greatly that we neither have anything to offer the other in the way of meaningful or constructive support.

That doesn’t mean we don’t share a rich history and a deep and abiding love for one another. We do. Our history is long and complex, filled with often turbulent times (both individually and jointly), and being there for one another when the chips were down.

Why then, one might ask, does it not bother me that she didn’t call me with her struggles and lean on me? Perhaps for fear I would bend then break under the combined weight of our woes? Maybe. I like to think, though —because Calvin has always been very savvy —that she realizes that one cannot be all things to all people and that you don’t have to share everything to be a friend. That, sometimes, when the history is as full and varied as ours is —we met shortly out of college, lived together in two cities, have encouraged each other in our professional and artistic endeavors, have literally nursed one another through times of extreme illness, depression, anxiety and more, and have been participants in each other’s life for a couple of decades —much like a marriage, the trust and love is there and you let it carry you through. Though we don’t see each other or talk as often as we once did, the connection is still there, still solid.

Last night I received an email from another old friend, P. We recently reconnected with one another after I moved back to my hometown —having left nearly 25 years ago. We have both changed a great deal but felt the tug of our grade school friendship. I didn’t have too many connections here and was grateful for rekindling that connection. P has gone through some tough times, including the loss of her mother in recent years, and has turned to her religion for strength and guidance.

My relationship with P could be characterized as acquaintances rather than friends. We run into one another on occasion and we email back and forth. I’ve told her all about my beautiful little boy and the road we are traveling. I’ve been looking forward to the time I could take Nik to meet “Miss P.”

Not anymore. Last night, I received the rudest, most offensive email I could have possibly gotten in my life. P likes to forward all sorts of inspirational stories and cute jokes. The kind one either reads, chuckles, then deletes or the kind you save to remind you of something really profound when you need it again. I have to wonder if P bothered to read the email she forwarded or if she truly is as grossly clueless as it appears. You see, the email wasn’t full of sexual innuendo, bathroom humor, or gross jokes; it was about disabled people. It went like this:

Today is International Disadvantaged People’s Day.
Please send an encouraging message to a retarded friend…just as I’ve done.
I don’t care if you lick windows, love farm animals, take the short bus or occasionally poop yourself…
You hang in there sunshine, you’re frigging special.
I hope you got a chuckle. I did : )

P.(name omitted)
Remember, Jesus Loves You and so do I

Yes, P, you are “frigging special” alright. I hope there is a special place in Hell reserved for bigots like you.

“Make new friends but keep the old. Some are silver and the others gold.”
…and some are pure garbage.

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"No" …Way!

Well, I decided to try an experiment today. Not sure why I picked today of all days given that Nik was up at 4:15 this morning, was tired out from a full day at school, AND we were having dinner at my parent’s tonight while Niksdad was at work. Usually a recipe for impending doom as the hour grows later…

The experiment? Treat Nik like a completely typical kid regarding discipline. No allowances for possible language comprehension problems, no compensation for his complex history, and no sympathy for those killer baby blues with the ungodly long lashes. (I can’t help it, I am such a sucker for that kid’s eyes and smile!)

Know what?

IT WORKED.

It wasn’t perfect but nearly every time I told Nik “No” in a very firm voice and either made him pick up whatever he threw, move away from whatever he was about to throw, or move away from dangerous/breakable things, etc. he actually responded appropriately! I was so shocked.. and pleased.

Now, I know that it’s a lot easier with a smaller child and I am not so naive as to think one successful experiment means the battle with Nik is won. I know it’s going to get a lot worse before it gets better and even then it will change through the years.

However, I won a far greater victory today…the battle with myself to stop seeing Nik as some fragile creature who might break if Mommy says “No!”

Hah! Not this little guy…the one who likes to flip himself backward and head first off the couch. The kid who likes to slide on the big kid slides instead of the toddler slides (also head first when Mom and Dad aren’t fast enough to stop him). The kid who like hot salsa, Chinese hot mustard, horseradish, and lemons (hold the tequila for now!). Definitely not a frail flower!

The gloves are off. Let the games begin…I only hope I can outlast my fearless, feisty child!

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(Self) Discipline

“…he’s going to need to know how to get through those situations on his own—without becoming aggressive and without dissolving into a puddle on the floor—because there won’t always be someone else present who knows how to ease his way, who knows how to redirect, change gears, and smooth things over.
…But it does remind me that very often, the true solution lies within. It’s not about taking on the world on behalf of the boy, it’s about taking on the boy and teaching him to find his own way in the world.”
*************************************************************************************
I’m sure Kristen over at From Here to There and Back was thinking of a slightly different context when she wrote this yesterday. Still, it’s been ringing in my head all day long.

Today we had an eye-opening session with Nik’s behavioral psychologist, Dr. S. She’s been invaluable to us as we’ve dealt with various feeding-related issues — Nik’s eating, he’s not eating, he’s eating again, he’s not eating, it’s sensory, it’s behavioral, no it’s sensory…you get the idea. In addition, as we are gearing up for the summer session at school and Nik’s IEP (which won’t happen until the district’s autism program evaluation is completed – hopefully by mid-June), we are very aware of some new behaviors that Nik is exhibiting which cause some trouble both at home and school. Specifically, tantrums when he encounters unmet expectations (whether a toy malfunctions or he expects to go in Mom’s car and we go in Dad’s, etc.), difficulty with transitions of all kinds (nothing surprising there, eh?), and the physical manifestations of those things.

We went to see Dr. S. to get some guidance on these things so we could have a greater measure of consistency between home and school; thus far, school seems to be waiting to follow our lead about what to do and how to handle certain situations. It turned out to be a much richer appointment than that. We came home with a feeling of tremendous support and partnership in helping us work with the school on a number of fronts. Such a wonderful — and RARE— feeling! We are working on some specific plans for a more focused feeding program at school, some specific plans for home around behaviors, and looking at how best to frame our arguments for a one-on-one paraprofessional for Nik beginning as soon as possible (but not later than the start of the school year in September).

Even so, it was a bit surprising when Dr. S. began to talk to us about her thoughts and observations of how we interact with Nik during his tantrums (which she got to witness first-hand today). The bottom line is that she told us we need to be much firmer with him and, unless he is in danger of hurting himself, let him wear himself out with the tantrum and start putting him in a safe time-out place. (That’s going to take some creativity!) I think we’ve become so tuned in to Nik’s nuances that we (I especially) have gotten adept at figuring out how to diffuse the situation before it escalates. However, I am thinking now that perhaps that’s not always in Nik’s best interest. In doing the things we do, which are loving and supportive no doubt, we may be reinforcing not only the behavior itself but sending a message that expressing his feelings of frustration (outrage?) is not as important as “getting a hold of himself” in order to accomplish…well, whatever it is in the moment. Sometimes that is correct. Often, though, it’s not the message we want to send and may, in fact, be disrespectful in some ways (my thoughts, not Dr. S’).

But what’s been rattling around in my head since we came home tonight is the larger issue of discipline for kids with special needs. Not just autism and any other conditions which may have a stronger behavioral manifestation, but also things like cerebral palsy, leukemia, cancer, Fragile-X, Downs Syndrome, etc. I find myself wondering tonight if, because of Nik’s multiplicity of overlapping, sometimes, intertwining diagnoses and conditions, I don’t discipline him enough (I don’t mean punishment!). Do I make unnecessary allowances for his physical limitations, or for his inability to express himself? Do I make assumptions about what he is or is not trying to express through his behavior? Do I “baby” him too much in my attempts to keep that peaceful, easygoing spirit of his ever present? Do I do these things consciously or unconsciously? Out of guilt? Out of fear?

I don’t have any answers yet — just lots of questions to ruminate upon over the coming days. Opportunities for me to take a step back and look at my parenting style. Not so much to change it in any global sense but to decipher the roots of my reluctance to (my inability to?) see my son as capable of handling the discipline of a typical childhood.

How do you discipline your children with special needs? Do you treat them differently than any of your other children? If so, why? If not, was it always that way? What prompted the change? What have you done with your exceptional child/ren that has worked? What works/ed for different age ranges?

I think there’s a kernel of a great parenting book in there somewhere…just give me credit for the idea, ok? I’m too busy learning how to parent my son right now…

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Shadows of Disablism

This post is written in honor of Blogging Against Disablism Day. To find other participating blogs, click here.

I’ve been thinking —obsessing really —about “Disablism” and what it means to me. I’ve been trying to find some righteous flame of resentment within myself about how someone may have treated my son because of his multiple disabilities. Countless examples have flit through my brain over the past 24 hours but none of them really aroused my ire enough to inspire any pithy, erudite pearls of insight or gems of wisdom to dispense. Not that these posts are necessarily about that at all.

Instead, it’s given me an opportunity to examine something a little closer to home —my own thoughts about my son’s disabilities. God, I hate that word — disabilities — so much! There is no less cumbersome way to describe Nik though than “disabled”. He is certainly “differently-abled,” “challenged, “orthopedically/visually/cognitively impaired,” …take your pick. But I see so much more than that each time I look into my sweet toddler’s long-lashed eyes or glimpse his impish, yet cherubic, smile.

In my waking hours I fight tooth and nail to help my boy get what he needs to be able to do more than just survive in this world. I take him from specialist to specialist, evaluations and therapies, school, the park, the playground, and ad infinitum. All in an effort to help Nik adapt and learn, to develop and grow to his potential. My husband and I try to parent in a way that is gentle and loving, accepting and respectful of Nik and all his quirks and talents. We are, by many people’s declarations, “the best parents” — “the right parents” for this little blessing whom God has bestowed upon this world. It’s not a sham, it really is how we live and the belief we hold is that our son can do ANYTHING.

But, in the stillness of night, sometimes in the quiet twilight before dawn when no one else is awake, I lie in bed and cry with the ache of the unfairness of it all. The exhaustion of grief held constantly in check so no one else can see the inner struggle to constantly rise above the emotions. I visualize the moments of my child’s life which may never be. It’s never a simple vision as it is juxtaposed with the current reality of the moment and inextricably twined around prayers for those moments and achievements that I hope will be. I seethe with envy over the ease with which my sister’s beautiful children take for granted their ability to walk, to talk, to feed themselves —while studiously avoiding their little cousin who makes them uncomfortable.

If I am glaringly honest —even in the stillness of those hours before sunrise when I am raw with feeling— I must confess that, perhaps, I too have a bit of the “disablist” in me. How could I not? Our culture worships the super-achievers among us —the great scholars and inventors, the athletes, artists, and aesthetes, the genetically superior, the richest, etc. We have come so far in creating a world that will accept our “also-rans” and our “less-than-perfects” with respect to making accommodations and provisions in the name of equal rights for all. But have we really come that far after all, when mainstream journalists still refer to special education as a “social malady” or when there is no representation of our disabled population in any of our entertainment media, no groundswell of community support to change our education system to ensure that EVERY child gets a real education? Are we kidding ourselves when we, as parents of children with disabilities, state so vehemently, “I wouldn’t change a thing about my child!”?

I, for one, willingly confess that there are many things I wish I could change about my son. I would gladly take away all of the physical limitations which keep my amazingly curious child from being able to experience the world to the fullest. Would that I had a magic wand to wave which would allow him to walk with ease, to eat with gusto, and to chatter his three-year old thoughts to the world. I would not change the essence of who Nik is for anything in the world; but I don’t think that his being and character are necessarily shaped by his disabilities. I see many facets of myself and my husband within Nik. It does not surprise me that his means of communicating with me is music or that he tinkers with every toy to figure out how it works (not how to play with it, but how it works!) much like his scientist father. Nor does it surprise me that he is stubborn, determined, and fiercely independent. Nik’s personality is not shaped by his limitations; his personality is what allows him to persevere in spite of them.

As the sun rises and I slip on my mantle of unshakeable motherhood, I rise to face a new day, immensely grateful that I am not alone in my desire to make the world an easier, more welcoming place for my child and for others like him but so completely unique. So very differently-abled.

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