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Posts Tagged ‘developmental disability’

Last year, my typically developing seven-year-old daughter had about a 1-minute homework attention span and over 30 minutes of homework daily. You do the math.

I tried everything — pleading, yelling, coaxing, creating a consistent routine, using positive behavior reinforcements and a visual timer — to no avail. Staying focused without having someone physically present to re-direct her attention to the work was simply above her ability. The year started and ended with a lot of teeth gnashing from both of us. The question of ADD hung in the air.

This year’s homework now lasts 10 minutes or less. Problem solved, more or less. No more anger and frustration. ADD is still a question mark, but our lives are more peaceful.

I also have a son who has a number of medical, developmental and behavioral special needs, much more complex than, but including, difficulty paying attention. Though it’s not a perfect analogy, it’s hard not to wonder if something similar could happen to him if the world was different.

The more time I spend “fixing” my son’s various medical etiologies, behaviors, and inabilities so that he can productively participate in society, the more I wonder: Are his disabilities themselves really a problem, or is it society who has a disability?

If his school cannot provide an adequate and appropriate education for him — is that his disability or theirs?

If our town’s recreation department cannot come up with a single activity that he could do with other typically developing peers — is that his disability or theirs?

If my community cannot see his value and seek out ways to include him in their restaurants, plays, activities and events — is that his disability or theirs?

If it does not occur to local business owners that they could one day hire him — is that his disability or theirs?

If my country cannot see the justice in creating a safe and welcoming society for him (and everyone like him) that gives him the supports he needs until all of these disabilities are overcome — is that his disability or theirs?

I’m not proposing that we lower the bar for him. But what if we could raise it just a little for everybody else?

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The daily grind of life as a special needs parent often feels like a game of Whac-a-Mole. Have you played that arcade game? Equipped with one huge padded hammer, the player attempts to hit small mechanical moles that pop out of their holes. Only one mole can be up at a time, but as soon as you hit one down, another pops up. The faster you hit them, the more there are to hit. Hit the most moles in the allotted time, and you are the winner. Free stuffed tiger to the lady in blue!

For those of you who’ve been there, you know what I’m talking about. Just as we finish addressing one issue, another comes up. Some neurology crisis arises…whack!…then it’s time for IEP negotiations…whack!…cajole our way to a new bus driver…whack!…and it’s time for another surgery…whack!…and the game goes on and on and on.

This past week we saw a new specialist in a branch of medicine we haven’t encountered before. It’s been on my to-do list but we just had so many other pressing challenges to deal with — failure to thrive, regression at school and the death of my dad to name but three. Not trying to sound like a Drama Mama, but I’m just sayin’: this particular specialist didn’t even make it out of our doctor’s recommendations and onto our calendar for five years.

So this week, as we waited in the exam room for the doc to arrive while my son ripped his collection of outdated periodicals to shreds, I reflected on how I’m just whacking away…but kind of grateful that our situation has changed enough that I could even contemplate sitting in this particular office at all.  Another tiny wave of gratitude arose when it hit me that some things can wait. Everyone isn’t so lucky. What happens when all the moles pop up at the same time? One only has one mallet.

Of course, seeing the specialist this week (whack!) led to another referral and another specialist. More whacks to come. But I’m aiming to win that giant panda hanging up at the rafters and I can do this for a long time.

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INT. AT A BREAKFAST TABLE – MID-MORNING

The table is set for four although only two people sit at the table — an energetic seven-year-old DAUGHTER and a slightly groggy and disheveled woman, her MOTHER. At the two other place settings, a full but untouched bowl and a cup of obviously cold coffee sit opposite a rather messy, half-eaten dish of food.

Off-camera, a boy and a man are heard upstairs in the bathroom, where Week 8 of an Intensive Potty Training Siege is under way. Strains of Angry Birds and Thomas the Tank Engine spill down the stairs.

DAUGHTER

(With a maturity completely out of character, perhaps intending to distract her mother from the fact that she has covered her oatmeal in a vast quantity of brown sugar.)

So, Mother, what are you studying these days when you go to Children’s Hospital? (Takes more coconut flakes. And some raisins.) Like, are you studying to be a physical therapist, or an assistant doctor?

MOTHER

(voiceover, as she chews a bite excessively thoroughly)

Oh crap, oh crap, oh crap. Teachable moment approaching at 100 mph. Do I take it? WTF, why not. We saw the movie “A Dolphin’s Tale” this week and I think I did a good job teaching her about physical disabilities. I think I can handle taking this to the next level. Let’s do this!

(Aloud in a deceptively unaffected voice.)

Well, I’m actually studying kids who have something called developmental disabilities. Do you know what that is?

DAUGHTER

Oh, you’re studying Brother? Are you learning how to take care of him?

MOTHER

(Voiceover, completely freaking out but managing to act cool.)

What? How does she know? I’ve barely been able to refer to him as having a developmental disability to myself. I don’t even think I’ve ever used that term in front her her. Damn kids, they repeat everything. Shit, I have to stop cursing. OK, calm down. This is it! You’re going to have The Talk! Stay cool. What did the books say to do? Oh yeah, I never found those books.

 (aloud)

Well, actually, I’m studying in a class of people who are doctors and nurses and physical therapists and people like that who want to learn how to take care of kids like him. They’ve invited me to study with them because they want to hear what it’s like to be a parent of a kid with a developmental disability….They ask me about you, too. They want to know what it’s like for brothers and sisters of kids with developmental disabilities. Maybe you could come to class with me some day and they could talk to you. (Pause.) What would you tell them?

DAUGHTER

(Without hesitation)

That’s it’s hard to get my parents’ attention because they’re so busy with Brother.

 (She glances to get reassurance from her mom as she realizes that she might be saying something that’s not good.)

MOTHER

(Sips her coffee, nodding in agreement. Voiceover)

Oh crap, she noticed. OK, just acknowledge her reality, don’t try to fix it. Let her talk.

DAUGHTER

Because he needs a lot of help doing things, and he’s active and moves around a lot. And I help him, too.

(Though she has been speaking at a rapid clip, it’s clear she feels she has crossed a line and somehow betrayed her brother to the imaginary group she is talking to and begins to backpedal.)

I mean, he helps me and I help him. We teach each other stuff. I teach him things he needs to learn, like the alphabet and counting.

 MOTHER

What does he teach you?

 DAUGHTER

He teaches me that he’s been learning things at school. It makes me feel good to know that he’s learning things and growing.

(With a certain amount of surprised realization)

 Being a sister of a person with a developmental disability actually makes you feel pretty special.

MOTHER turns her head to hide her smile and watery eyes. She wants to cheer and hug her daughter; she realizes that the conversation went so well that if it was scripted it would seem fake. But she is acutely aware of the danger in praising her too much at this moment; she fears that she will condition her daughter to be self-sacrificing and ultimately resentful, which she desperately wants to avoid.

DAUGHTER too decides that that’s about all she can handle, and asks if she can have more coconut flakes on her oatmeal. Her day continues as if this conversation has never happened.

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Not too long ago I ran into an acquaintance. We were getting caught up on things and I told him how I had sold my business a year ago so that I could focus on my child’s needs full-time. “But doesn’t he go to school all day?” he asked. “What do you do all day?” he wanted to know. Resisting the urge to punch him in the nose, I put on my best smile and said, “Oh, you know, this and that. It’s a full-time job.” I knew he’d never get it, so I let it drop.

Last Thursday, September 29, 2011, I decided to keep track of my activities and tasks related to having a child with special needs. These are only the things related to the “special needs” part of our lives; I didn’t include the time I spent with my daughter, or grocery shopping, or dropping off a carload of stuff at Goodwill. I squeezed those things into the blank spaces between the stuff below. I think I was too busy to capture every single thing but in general here’s what made it onto the list:

6:30 Wake my son. Hand-over-hand assistance getting him dressed, bringing him to the bathroom, giving meds, bringing him downstairs for breakfast.

7:00 Eat breakfast, physically or verbally prompting him about every 30 seconds to sit down, use his spoon or napkin, take a bite, clear his plate, interspersed with a request to sit on the potty; assist hand-over-hand with brushing teeth, putting on shoes/coat/backpack.

7:40 Wait outside for school bus. After five minutes scramble to get husband to walk daughter to school, because she will be late.

8:00 Call School Transportation to find out why bus is late. “She’ll be there in five minutes.”

8:15 Bus arrives. Smile at bus driver and commiserate on traffic while wondering silently what I would have done if I’d had to get to work.

8:20-9:45 Desk time. As “case coordinator” for my son’s healthcare, services and schooling, the day begins with a perusal of a variety of list serves that help me stay aware of upcoming training opportunities, recreation programs, etc. Today prompts me to email my state senator and representative regarding an upcoming bill and hearing on special education legal issues. Then it’s on to Whack-a-Mole of calls and emails: Five emails and a phone call regarding finding a physiatrist, two calls to talk to a potential guest speaker at our city’s special ed parents meeting, send out an email to same group for an upcoming event, obligatory confirmation call for tomorrow’s endocrinologist appointment, phone call to geneticist office to request blood work orders be put through in time for tomorrow’s visit at hospital, email with son’s school for next week’s home visit.

11:30-12:45 Meeting at pediatrician’s practice. Because of my experience as a parent of a child with special healthcare needs, I’ve been invited to participate in a medical home transformation process. These meetings are weekly and also include a few overnight conferences over the next two and a half years. While I’m not really being compensated for this work, it feels important and meaningful.

2:00 Walk to pick up daughter, while making phone calls for delivery of diapers and shipment of specialty meds. While I am waiting for her to be dismissed, I read a few pages in a book written by other parents of children with special needs.

4:00 Son arrives home and luckily he has an amazing PCA who helps him for 90 minutes each afternoon so that I can get dinner ready and do laundry. This used to be the hardest part of the day.

5:30-5:45 Dinner, with same level of re-directing as at breakfast. Never as relaxing as I expect it to be.

5:45-8:30 Sitting on a stool next to my boy in the bathroom. He’s in a critical phase of potty training: he has figured out how to hold his pee, but not how to go. He has not peed since he woke up in the morning and is rocking and shaking because he needs to go badly. My husband and I take turns sitting with him until finally he declares that he is tired and we put him in a diaper and put him to bed. He asks to get up to go to the potty three more times with no luck, then pees so much within minutes of falling asleep that we have to change him and his bedding.

8:30 More laundry, then get my bag together for tomorrow’s developmental disability fellowship classes. Too tired to do more than toss some dishes into the dishwasher and veg out in front of the TV.

So there, that’s what I did all day. Despite the effort, the to-do list remains long–write a will, special needs financial planning, fill out dreaded re-authorization paperwork for supplemental health insurance, talk to husband about the implications of this new genetic testing; the list is always there.

I would like there to be a more inspiring or insightful closing paragraph for this post; it reads as whiny, self-righteous and needy. On some level, it is — I do find myself often wondering if anyone really understands how much work this is. I can’t even begin to address the issue of the privilege I have in being able to “stay home” to do these things. But there’s more to my life than this, yet alas the blogging time slot on today’s calendar is coming to a close and I don’t have enough time to figure out what exactly that is. Gotta go…I have too much to do today.

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Following yesterday’s post about the importance of hearing more from siblings of special needs, someone pointed out this great video from the Arc of King County in Seattle, Washington.

Watching the video brought to mind a stressful evening last week where my daughter, who is typically developing, expressed her feelings of just how unfair it is that her brother, who has special needs, doesn’t have to do homework like her — through tears and with a great amount of screaming. This video convinced me that’s it’s time to ramp up the help she’s getting in figuring this all out.

The video is a little on the longer side at nearly 15 minutes, but a great introduction for parents, grandparents, family friends and teachers on the challenges their neurotypical kids might face. It could also be worth showing at a Special Ed Parents Advisory Council meeting or other gathering.

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After years of asking myself questions like “Why am I filling out this medical form when this information is already in their computer?” or “Why does this doctor only see patients during school hours?” and other such silly observations along the journey through parenting a child with special needs, I suddenly find myself invited by a couple of well-respected healthcare institutions to share my perspective with their staff and students.

It’s quite a responsibility to be given a seat at the table among pediatricians, speech/occupational/physical therapists, psychiatrists, practice managers, social workers and policy lawyers. I am so grateful to those family advocates and disability activists who have worked tirelessly to create a culture where a parent’s experience and opinion is valued and sought out. I hope I don’t let them down. I’m also acutely aware that I am speaking on behalf of the vast majority of parents of children with special needs who feel disenfranchised and powerless; due to either perceived or actual limitations, they don’t know how to speak their mind, share their story, or give their feedback to the professionals who hold the purse strings, create the laws, implement the therapies or design the communities that impact their families’ lives in very real ways. I hope I don’t let them down either.

On the heels of us parents pulling up a chair at the table, there’s another group beginning to claim their space here too—siblings of people with special needs. As the folks who will possibly spend even more of their own lives with their special family members than parents, sometimes as adult caregivers and guardians, they have a perspective to add to the conversation. Particularly amazing to me is how aware they are of the ways this experience has shaped them and helped them grow. Their very “boots on the ground” experience with a decidedly non-parental (read: less hysterical) perspective gives their experience credibility; I know I seek out their advice to help me create a family where both of my children can thrive and feel nurtured.

As sibling groups mobilize to create support groups and education like SibShops, conduct and share research, and build their own community within the Family Movement, I just have to say how glad I am that they are here.

They also just might be more effective at educating the very folks whose tables I’m sitting at these days than I am. In blogs, at fundraising events, on YouTube, in the media and on Capitol Hill, they are savvy and persistent.

Here’s a recent example, a short but remarkable video by a teenage sister of a boy with special needs. I can’t believe how lucky we parents are to be standing shoulder-to-shoulder with her:

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Stephen Colbert as the fictional Stephen Colbert
Image via Wikipedia

I remember, during the course of so many conversations, having to point out to my dad that we didn’t use this word or that word  to describe various groups of folks anymore. I know he didn’t mean to want to be offensive; he just needed a little help keeping up with the times. (Although I always appreciated that he said “dungarees” instead of “jeans” and he often called his shorts “Bermudas.”)

Well, now’s my chance to help some of you keep up with the times too. News flash, in case you missed it: the r-word, including the word “retard” and phrases like “That’s retarded,” are now off the list of words to use if you’d rather not appear degrading and hurtful.

Stephen Colbert interviewed Special Olympics CEO Tim Shriver who did a great job of explaining why here. They do a quicker (and funnier) job than I can, so check it out.

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