Saturday, January 31, 2009

How do you know when to make the switch?

I really think that my son, E-Niner, could use a work-up of his medications. Our Ritalin regimen doesn't seem to be cutting it -- he's got a very severe case of ADHD.

And when I say very severe, I mean to say that it was apparent at four months old when he looked like a jack rabbit in heat trying to get himself from his belly to all fours.

Four months. We didn't think we had a problem. We never saw anyone else's kid do that. But we were in that blissful new-parent, first-child mind-set that allowed us to believe our child was a superior being.

At ten months old he was flinging those giant, economy sized boxes of diapers around our family room. He'd hold the box over his head throw it, and then run to the other side of the room to pick it up and do it again. Ten months.

I could proceed with the litany of milestones and warning lights we missed, but you get the point. Fast forward to five years old, two school expulsions, and one psych ward visit later.

He's out of control in the mornings before we give him Ritalin. He's a mess in the evening when it comes out.

When I say "out of control" and "a mess," I mean to the point that our family has now separated in half during those times (one of us feeds him, the other hangs out with our other son) because adding just two people in the room over-stimulates him.

So I've been thinking about switching up his Ritalin to Strattera. I hear they make a dose that lasts for 24 hours, which sounds wonderful. (We've tried long-acting stimulants in the past, but his crashes off those, even with a tiny dose of Ritalin to ease him off, were literally 911 unbearable.)

Anytime we switch-up his meds -- and by meds, I mean Ritalin, Seroquel, Depakote, Clonidine -- it's like an enormous earthquake sets off in his body. There is part of me that feels very nervous of this idea of switching to Strattera.

First, Strattera works in a different part of the brain than Ritalin. So who knows if the drug will be as effective for E-Niner. So that's that whole headache.

Next, I'm worried about it suppressing his appetite. The number one thing kids need to do at his age is eat and sleep. Eating has been an uphill battle since he started Ritalin since he's on it eight consecutive hours a day. That's eight hours of not eating. What if a 24 hours dose suppresses his appetite that long? It's not like you can reason with a five year old.

Then I'm worried about it not working, which means that his safety, our safety and the state of our house and property are all at stake.

At the same time, what we've got going around here isn't working too well either.

I hate this about medicines. It's like you're running these high school science experiments that are iffy at best. Try it, see if it works, if it doesn't try something else.

I hope someday -- in his lifetime -- prescribing mental health drugs won't need to be such a coin toss.

Friday, January 30, 2009

Erasing the Lines, Even as I Draw Them

I’ve been thinking about civil disobedience lately with the recent inaugural event, the swell of pride in the air holding the promise of Dr. Martin Luther King’s words like gifts, like baby birds in the nest.

I’ve been thinking about Gandhi, rolling the word Satyagraha in my mouth, round and round. Satyagraha, the name of the passive resistance movement waged against the British until India won its independence in 1947. Satyagraha, from the Sanskrit words for truth and obstinacy. Say it: Satyagraha. You can’t help but feel its quiet intransigence, its power.

We’re did a short block on Indian culture in our homeschooling lessons last month, reading about Gandhi’s life and his work. We’re doing a short block on African American culture this month. I planned it so that our stories would coincide with the start of the Obama’s presidency; I didn’t let myself think there’d be any other outcome.

We just finished reading the Enki story about MLK and this morning, I took my son, Fluffy, to his first real play in a real auditorium, the room dark, the seats plush, the actors larger than life on the stage before us. Not like the many puppet shows and picture books enactments we’ve attended, sitting on our dusty coats, toddlers wandering around, punctuating the air with sticky lollipops.

Fluffy didn’t want to go. The idea sounded good when I first mentioned it, the thought of this future thing as abstract and fleeting as a puff of breath that disappears in the icy air of winter. When it came time to leave, he collapsed to the kitchen floor, his own passive resistance. This happens when he feels sad or worried, when answers are disappointing, when transitions lead to places he’s not sure about. It’s part of the Aspergers mixed with dysregulation from sensory confusion and after four years of poking my stick in the dark, I’ve finally found a couple of strategies that can usually get us out the door with relatively good humor.

He liked the play, sitting through the whole hour even though some of it was hard to hear, lots of information spoken too quickly. But those words, King’s words, how could one not love those? I cried, of course. I always cry at things, Bambi, WallE, Gandhi, anything that ends in that ‘e’ sound, MLK-e, Obama-e.

Last night I stayed up very late watching the 1982 movie about Gandhi starring Ben Kingsley and what struck me on this viewing was that Gandhi believed in fighting. Fighting. King, too. They believed in revolution, in inciting action, in a complete and utter shift of consciousness and system, in unrelenting, non-violent disobedience.

Hate the sin. Love the sinner.

Fluffy’s been taking a circus class on Saturdays. He goes with his dad so I’m not there to see what goes on, to coach or pull the teacher aside before and/or after, to walk that line between holding the group’s interest and advocating for my son’s wellbeing and success.

Apparently, a parent has expressed concern about the class, about Fluffy’s behavior, about her own daughter’s safety. When I read the email, I got that feeling in my body I’ve gotten many times over the years right before being told that Fluffy has to leave, like the very first time when he was kicked out of preschool at three. It's an intertwining knot of defeat, sadness, frustration and fury.

I know this parent has every right to be concerned about her daughter; she’s advocating too. But she’s typical. Her daughter's typical. She’s in a class with a child that’s not typical. And I can’t shake the feeling that she, the mother, simply wants the non-typical child to go away or get typical or suck it up enough so that all the non-typical stuff can wait until after her little girl skips down the hall and climbs into her car seat.

She doesn’t want to deal with anything hard. But guess what? Hard is part of life. And hard stretches. And hard teaches. And hard softens, when it’s in contact with the proper elements, when the touch is gentle, curious, warm, creative.

I’ve never gone in for the big Fight Against Autism but I was instantly recruited to the Fight For My Son’s Happiness from the first moment I held his glorious, sticky little body.

So I’m back to thinking about civil disobedience, about the things that need to change, the beliefs, the attitudes, the divisions between us and them.

I want to be the change I wish to see, I want to walk my dream into being, I want to extend goodwill and still mount an unrelenting, peaceful attack on the tides of ignorance and fear, erasing the lines that section us into camps, even the ones I’ve drawn here.


Thursday, January 29, 2009

another first

My name is J. and I am a parent.


I am a Mother to 2 beautiful boys, they were not nurtured by my body, nor did I know them for the first years of there lives but I am no less their mother then the woman who conceived them.


I did not breastfeed them as infants or change their diapers. I did not see their first steps or hear their first words. But I know the things that make them giggle and cry now. I dry their tears, chase away monsters, protect them from the bullies at school, yell at them when they drive me crazy and tickle them as we walk through the grocery store. I buy them treats when I am out because I know that they will love that toy or book but I will never really know what they were like as little boys.


Sometimes I feel as though I missed out by not having the privilege of being their Mom sooner. If they had come here first, instead of being with the four other Moms they had between leaving their birth family and coming to their forever family. Sometimes I cry because it makes me so sad to know that these 2 little men had to go through so much to make it here and wouldn’t it of been easier if it hadn’t happened that way.


However, 3 years ago when these boys had to leave their birth family I was not ready to be their Mom, sometimes I wonder if I am ready now. Three years ago I was falling in love and getting married, making plans and dreaming about helping kids who needed families to love them.


I did not think it would happen quite like this, that we would adopt the first two who walked through our door, knowing that we would keep them even before we met them. I thought there would be many kids coming and going first, that there would be time for me to wrap my head around being a parent. To figure out what worked for me and my husband, time to discover how we would parent together. I thought there would be few practice runs with kids that needed a home for a few weeks or months while their birth families got back on their feet. You know, kind of like taking a niece or nephew for the weekend when you are pregnant to getting a taste of being a parent full time.


Life is not always what you planned though, things do not always work out the way that you wanted or expected them to. So here, I am six months later, a Mom to two precious boys who need a lot from me. Our days are busy, filled with exciting and frustrating moments. My kids have many needs that other kids do not, they have struggles and issues that other kids never have to face but they are mine. I will love, nurture and respect them through each and every struggle because that is what Mom’s do.


I am excited to be a part of this wonderful group of parents and I am looking very forward to contributing each month.

The First Step

Did you ever think it would turn out like this?

I didn't.

In fact, I had an iron-clad deal (I thought). When we adopted, I checked-off the box that said, "No Special Needs." Didn't think I could hack it.

And believe me, to this day, I sometimes wonder if I can run this marathon.

There are days that I say to myself, "I'm doing it! I'm doing it!" And there are those days, that sometimes come relentlessly for weeks at a time, that I say, "How am I going to keep doing this? I can't do this anymore."

So I started Hopeful Parents, a grassroots community where parents who understand what it's like having a child with special needs can connect.

Consider it a pit-stop in the marathon -- where we can go for attention to our wounds, where we can re-energize our way back on track, where we can look right and look left to see others running too, where we can hear the roar of the crowds cheering us on.

Hopeful Parents is a place of common ground.

Over the course of the next month, we'll introduce you to our diverse pool of talented, thoughtful writers who will share their stories, their feelings, their ups and their downs.

You'll meet parents raising children with physical, psychological, emotional, neurological, sensory, behavioral, social, genetic, and developmental disabilities. Some parents are single, some are married. Some grieve the loss of their child.

You'll also meet healers -- the "medics" who help us through our run. People we can turn to in our pain; people who can help provide some relief.

These writers -- the parents, the healers -- remind us that we're all on this journey together. We don't have to go it alone.

And with that spirit of togetherness, I invite you to get involved with Hopeful Parents. An easy way to start is by commenting on the posts that move you. Then explore the sidebar. There are quite a few links with ways to participate. Please check them out.

Whatever you do, please join the community.

Joining costs nothing and will give you some perks on the site -- access to discussion boards when they become available, the ability to find other hopeful parents in your area. But that's not why I want you to join.

You should join because we -- parents who face increasing medical expenses, parents who often times face uphill battles with our schools, parents who feel the minority in broader social settings -- will have a louder, more powerful voice if all of us, regardless of diagnosis, could come together as one unit.

If every parent of a child with special needs were to join Hopeful Parents, imagine, for a moment, what we could do. Imagine banding together as a whole, collective voice to advocate for our children. Imagine a united assembly, strong in numbers, able to encourage more thoughtful leadership and policies so that we can better help ourselves, each other, our children, our communities, our nation and our world.

It's not a small vision. But it can be done. It starts with you.

A grand undertaking like this -- our marathon -- starts with a step. Here's the first one.