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Posts Tagged ‘special needs parenting’

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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Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

When it comes to raising kids with special needs, there are a lot of gatekeepers who get to be on our “team”– insurance company reps, city officials, special ed departments, healthcare providers, state agency eligibility screeners.

Cultivating trusting relationships with these folks is essential to me; not just because I believe in the old adage about catching more flies with sugar than with vinegar, but because treating people with respect and compassion and humanity is important to my integrity. Confrontation is so draining. Besides, it’s a great opportunity to pay off some old bad karma!

Though from time to time an impasse occurs and it is tempting to lose my temper in anger or fear. Often what’s going through my mind is those situations are questions like: “How can they expect my child to make progress with so little?” or “How dare they tell me what’s best for my child?” or even “This person seems to like my child a lot and they have a lot of expertise, but why doesn’t what they’re proposing feel right to me?”

Blurting out these questions, especially in a tone of mistrust, anger or rage can damage these relationships. In my experience, even calm-headed, straight-out debating — trying to convince the person whose opinion differs from mine why their position is “wrong” — doesn’t often work either. They often shut down, get defensive, dig their heels in deeper. It’s useful in these situations to have a go-to strategy that keeps the conversation productive.

In their popular and helpful book Wrightslaw: From Emotions to Advocacy – The Special Education Survival Guide, authors and advocates Pam and Pete Wright propose what they call “The Columbo Strategy”:

“Tell the School Staff that you are confused. You want to ask a stupid question.”

Remember Columbo? With his trademark cigar and his hand to his forehead, he’d give his suspects plenty of rope with which to hang themselves in the form of one “stupid question” (usually when his hand was on the door and he was about to leave). Always friendly, never confrontational, he’d play the seeming fool before tripping them up in their own lies.

Employing the Columbo Strategy, you can sometimes bring the team around without having a head-on confrontation. Telling educators and other helpful people that you have a stupid question usually brings out their desire to help and mentor. I must admit I’ve used this technique successfully in meetings to illicit an increase in resources without having to ask for it directly.

The problem for me with this technique is that it feels duplicitous and can make people feel “handled.” The key is to keep a curious, neutral tone and to actively listen to their answer.

In Zen Buddhism, this state of openness and curiosity is referred to as Beginner’s Mind. In this space, one has no preconceived answers, only an eagerness to learn. While this might seem like a powerless posture to assume in a negotiation for something as important as your own child’s needs, it can be exactly the opposite. It doesn’t create defensiveness in others because it is at its heart an open, inclusive, team-oriented state.

Beginner’s Mind can reveal a lot of illogical holes in systems. Asking “why?” over and over again, when it leads to responses like “Because that’s the way we always do it,” or “Because we don’t have a budget to do any more,” is an extremely effective tool, especially when you simply let such answers hang in the air.

There are no guarantees of course. Each situation calls for its own approach, but having a sincere beginner’s mind is never a bad starting place, in my experience.

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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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Other people’s dreams can be so tedious, I know, but it can’t be helped.

I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that I don’t need to be there, this meeting isn’t about me, I seem to be doing fine and this is a support group for people with urgent issues, but why do I ask, they wonder, do I need to talk? I burst out crying, “I ALWAYS need to talk,” and I’m whisked away to another part of the room before I infect the others with my hysteria.

I am led to a table surrounded by a Greek chorus of special needs parents who in real life know my heart the best, and I plead “When will I need to stop talking about this?”, embarrassed, ashamed that I’m not cool about all this, that my struggle means that I don’t love my son, that I’m not a good mother. “I mean, he’s healthy, he’s not in pain, he’s not sick, he’s loving, he’s great. So why do I still feel like I need to talk about this?” They absorb my words impassively. Without pause my words continue to flood out, “Sometimes I think about what it would be like if I could take all of his challenges away,” and they shake their heads vigorously, moaning, “No, no, we must never do that, it can’t be done,” but I can’t help it, the words are already out, Pandora’s box has been opened, and the only way to describe what that would be like is to show them, and I raise my face upward and gasp for breath, arms floating as if I am breaking the surface after being underwater much too long, and they all raise their faces too, and they all inhale deeply with me.

“But that’s not the right metaphor,” I said, “because that would mean that now, I am drowning.”

And I wake up gasping for breath.

———–

Last weekend I went on a retreat called “Living Beautifully with Complexity and Change.” Our theme, we were told, would be this prophesy, taken from Perseverance by one of our teachers, Margaret Wheatley.

From the Elders of the Hopi Nation
Oraibi, Arizona  June 8, 2000
 
To my fellow swimmers:
 
Here is a river flowing now very fast.
It is so great and swift that there are those
who will be afraid, who will try
to hold on to the shore.
They are being torn apart and
will suffer greatly.
 
Know that the river has its destination.
The elders say we must let go of the shore.
Push off into the middle of the river,
and keep our heads above water.
 
And I say see who is there with you
and celebrate.
At this time in history,
we are to take nothing personally,
least of all ourselves,
for the moment we do,
our spiritual growth and journey come to a halt.
 
The time of the lone wolf is over.
Gather yourselves.
Banish the word struggle from your attitude
and vocabulary.
 
All that we do now must be done
in a sacred manner and in celebration.
For we are the ones we have been waiting for.
 
————

In my dream, I was right. Drowning wasn’t exactly the right metaphor. I wasn’t drowning, but being torn apart from clinging to the shore. And the clinging, I see now, doesn’t come from me wanting him to be anyone other than exactly who he is, but from wanting the rest of the world to be a place where he — where all of us — is safe, welcome, valued. I know that to help the world become this place, I must let go, surrender to the river and its destination, and sometimes I can. There are no guarantees that the middle of the river is any safer, any less treacherous, but it feels like the right thing to do. Every moment becomes the chance to do it again, to re-commit to letting go and being in the middle, where all the important work gets done.

Here I float, in the middle of the river, in sacredness and celebration, banishing the word struggle from my attitude and vocabulary. Will you join me here? When I forget, will you remind me to let go?

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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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A few weeks ago I wrote about the luscious, feet-up summer I was having. The contrast between last month and this one couldn’t be more stark. Not only is it back-to-school for the kids, but back-to-school for me and a big mental transition out of a period of grieving for my father and my role as full-time case manager for my son with special needs.

Hear that grinding noise? That’s the sound of me switching gears rather ungracefully, from first to fifth and back again without completely depressing the clutch. As I work through the tasks of coordinating new childcare routines, figuring out how to be a student in the 21st century (there are no Trapper Keepers on this side of the millennium),  swapping summer clothes for fall, getting used to my husband being away for travel more often again — I am a hot mess. It is not pretty.

In the midst of all this busy-ness, I committed one of the cardinal sins of special needs parenting (and honestly, parenting in general…no, make that life in general): I decided I was too busy to take care of myself.

Self-care for me is the stuff that builds my capacity for this intense life, increases my strength, stretches me and makes me grow. It is not glamorous or even pampering; it is sometimes sweaty, sometimes painful, sometimes boring, often the last thing I want to do with my limited time and energy. It is more akin to the “wax on, wax off” training exercises that Mr. Miyagi had the Karate Kid do — motions that, when done often enough, become part of muscle memory, protective stances deeply rooted in habit and graceful in their economy of movement. Practices that bring me into my body and present moment and hopefully keep me there long enough to fix a couple of problems, give someone a hug and have a laugh.

It started out that I told myself that I didn’t have time to go running because I was too busy catching up on a summer’s worth of email. Then, I couldn’t go to yoga because I was too busy getting ready for school. I couldn’t plan or cook healthy meals because…you guessed it, I was too busy. Eventually, it wasn’t just that I was too busy, but I was too tired, too.

An occasional skipped workout — what’s the big deal, right? Isn’t all of this focus on self-care really just self-indulgence? Maybe for some, but for me, not taking care of myself quickly spirals into unpleasantness towards for the people I care most about, my husband and kids and my mother: I become critical and I raise my voice. I hold others responsible for my emotions. (“Don’t make me angry…you don’t want to see the Hulk when he’s angry.” That kind of thing. Real nice.) I overextend myself, get overwhelmed and anxious, which I strangely compound by trying to distract myself from by going on-line and taking in even more mindless information. I also tend to not pay attention to details and make mistakes which cost me more time and energy.

When looking at the costs of not taking care of myself, I see that self-care is not self-indulgent. It is a responsibility. For the sake of my family, my friends and my community, I can’t afford not to.

What is sort of confounding to me is just what a huge amount of self-care I, a bundle of anxieties and distractions, require. No two people require the same amount, but when I look at the list of just the basic self-care maintenance activities that are needed, it’s almost absurd:

  • Physical: run twice a week, yoga class twice a week, some form of activity (walking or biking instead of driving) on other days; plan and prepare healthy meals
  • Mental and spiritual: attend weekly talks at my local insight meditation center and meditate daily at home for 30 minutes; make some art once a month; step away from my phone and computer every day
  • Emotional: connect with my husband and kids every day; go to therapy every other week; blog once a week; sketch or write in my journal as needed; get together with a friend (without kids) once every other week; read books and blogs by and about special needs parents

I get up at 5am to meditate and journal. I go out after the kids go to bed for yoga and to see friends. I squeeze in the runs when I can; I’m no longer ashamed to show up to school pick up drenched in sweat. I leave early for my meetings so I can bike. At times it seems so unfair that in addition to IEP meetings, doctors’ appointments, therapies at home and everything else, that what this life requires of me is a tremendous amount of time and energy simply on maintaining my sanity.

But this morning, as I headed over to the yoga place around the corner, despite the fact that I have a million other things to do, I remembered there’s a brilliant saying from AA (Alcoholics Anonymous): “It takes what it takes.”

It takes what it takes. As in, yes, to get sober sometimes you do need to check yourself into a hospital, move, get a new job, leave your spouse, get new friends, go to a meeting every single day for the rest of your life.  Some people need more than that. Some will need less. How much does it take to get sober? It takes what it takes.

How much does it take for me to live without be angry, stiff, whiny and overwhelmed? Apparently a fair amount. It takes what it takes. For all of us. Even for me.

Anyone out there care to share what it takes for them? Can you share what you’ve done to make time for self-care, especially when you’re busy? I could really use some inspiration!

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