@ Home in the World

I'm not alone. You're not, either.

One of my goals for going to Blogher11 was to sit in on the Special Needs Mini-Conference.

Prior to this, I had never really identified as a special needs blogger and somedays I don't really identify as a special needs mom. Over the years however, I have come to realize how others who have had the experience of raising an adopted child - particularly, but not always, one adopted internationally - were drawn to one another at gatherings. More recently I have noticed the vast difference in my personal comfort level in the company of mothers with special needs children. These women have seen it all. A temper tantrum here, an unusual mannerism or several, an aversion to transtions, a sensitivity to the seemingly innocuous, a vocabulary of strange sounds - these parents try to help or they nod in recognition - but they don't judge.

Beyond seeking the company of others who had "been there," I can't say that I had any specific expectations of the extended session except to learn how people, beside those I was already reading, handled this topic. Mir and Christy, for instance, handle it with particular grace; something I have to assume is partly an extension of their personalities, and partly their writing talents. I was also intrigued by the notion, in the session blurb, that we were telling a story that no one wants to hear.

Well, maybe no one outside the special needs community, but as we are learning, that community is a whole lot bigger than people think. The fairly large room at this one conference was filled with people, and this was just one subset of a conference of people who called themselves writers or bloggers. Imagine how big the population outside this one room could be and what we could learn from each other.

It turned out that one of the things author Rob Rummel-Hudson was talking about was advocacy - writing and talking about what it's like to raise a child with special needs when the people around you, who haven't experienced what you are going through, want mostly to avert their eyes. Aurelia Cotta spoke about the people around her not wanting to hear how medication worked for her and how people compared her to a drug addict. Someone in the audience mentioned that she struggled with the hopeful but impossibly high expectations of her relatives for her preemie daughter when the future was far from certain.

At our tables we talked about what and how much we shared about our children or ourselves on our blogs and in real life. How much do the people outside of our immediate lives need to know? Particularly for those with so-called invisible disabilities, how much do we need to explain their behaviors?  How much will they hold against us? Why are each of these encounters and the decisions associated with them so much more of a struggle?

Interestingly, I found myself once again at that scary intersection between my public life and my semi-anonymous blog, and the more we talked and I listened, the more I realized how many dimensions there were to the struggle of parents, including one I have spent much of my life defending - the public school.   Before I knew it, I was standing and speaking and addressing something I have never really discussed on this blog - I outed myself as an elected School Board member.

I am and I have been for the last ten years, a local school board member. I got involved out of a lifetime interest in education, educational technology, and educational policy. I have worked my way through nine budget seasons cognizant of the tension between the cost of special education services and the pressure they put on the rest of the school, I have learned more and can go on and on about how to run a school, what works and what doesn't, what we as a society should have but aren't willing to pay for.

I have sat in on countless IEP meetings as a parent and wondered what it would be like if every student got this kind of attention instead of the half-hour parent/teacher conference twice a year, but the national conversation about education seems to be going in exactly the opposite direction. I have involved myself in countless discussions online about the conflict of reformers who act as though we aren't demanding enough from our teachers and simultaneously maintain that they are overpaid because any idiot can teach. I have argued with people who simply do not recognize the presence of special needs students in their calculations of what makes a successful school, or worse, claim that special ed services are simply a ploy by union members to increase their numbers. What I have found most disturbing though, is the more recent tendency of people, who were once only against mainstreaming, to assert that our scant educational resources should go to those who have the best chance of being productive members of society.

This sentiment has only been escalated by the rise of the Tea Party. Many of those who once feared that such arguments would meet with disapproval for their very selfishness are afraid no more. They speak of our children as a burden for which they should not have to be responsible.

And so, I stood in that conference room and identified myself and advocated for advocacy. Because this fight is going to get worse before it gets better, but it's not a fight any of us has to face alone.

The Ends of Things

 

School is almost over. The countdown is two weeks now. Pumpkin's end of year performance and open house were both last week. I watched my youngest child get up on stage and with 30+ peers and sing at least part of the songs. He knew his lines and his cue to step up to the microphone. His fidgeting and enchroaching into his neighbors' space was unchanged from last year, when the fact that he was the only child exhibiting constant movement prompted me to finally agree to ADD meds. That was most unexpected, but I'm still glad I did it because the medicine has helped him ward off the sillies and exhibit much greater self-control.  Another mom with an austistic son pointed out Pumpkin's shirt-twisting behavior and said that she recognized it. It's always a relief to hear from people who understand what's going on with him.

This year has been a surprisingly sucessful year for Pumpkin. And it's really been this past week that i've noticed things like how much he is talking about other kids in his class and how he speaks of playing with them and exchanging ideas. I can remember celebrating in earlier years being able to have the simplest of conversations with him, and having him ask questions of me. Now he's able to tell me more about how he's feeling and what makes him upset. He's starting to take an interest in sports, which always surprises me and reminds me not to pigeonhole him.

I was a little worried about his teacher assignment for this year and I think he did take her some getting used to, but overall, I would say this was a far more successful year than the last one. They were able to push/coax him farther than I ever would have imagined.

This past weekend we marked another ending of sorts. The social worker who guided us through the adoption process (twice) is retiring at the end of June, and with that, the agency will close its doors. A few years ago another employee was arrested for embezzling from the agency. Though she was ordered to make restitution, adoptions were getting tougher, the recession would soon follow and the agency never really recovered. 

This weekend a small group of local families brought together by our agency came together to celebrate the social worker who made it all happen. The cake you see up there represents several of the countries our agency worked in and of course there's the U. S. flag that all our children came home to. I knew only one of the families at this particular gathering, but it was interesting that the experience of having traveled to a foreign country to start a family, and then come home and handle the challenges our children presented produced a near instant bond with many of the others.

It felt so good to be able to tell another parent that her child, with behavioral quirks I also recognized, was able to come up to my older son, introduce himself and ask Tigger to play. I recognized her happiness at this news, that her son was reaching out, that all the time spent in therapies had manifested itself in a friendly, if young for his age, little boy. Hurray for them! There is hope. Our work and our belief in our kids is paying off. We have been able to give them something worthwhile - a home, a family, a chance!

It's interesting that this was the first year that I did not feel that pull to be headed to Russia. I don't know if the weather and the calendar didn't match, or we had a different trip (to Washington DC) to plan but usually, every April and May, Piper and I start talking about how it really feels like we should be packing and putting together paperwork. It wasn't like that this year.

Tigger has been with us 8 years and Pumpkin 6. We are rapidly closing in on the number of years we were married without children. It is getting harder and harder to remember what it was like before. I am certainly no longer longing for those childless days as I once did. We still have significant challenges, but with each passing year, we are more and more a team.

Our newly constructed house isn't so new anymore, and could frankly use a paint job in some places. I'm coming to realize that many of the office clothes I had before children are almost 10 years old and need to be weeded out. And, even though I did not birth these two children, at nearly 45, my body type is different than it once was.

I'm not exactly sure how to put this, and I'm sure that I'll be exploring this in the weeks to come, but I have come to a point in my life where I fell like I need to get a better handle on things. Of course, sitting here trying to work this out at nearly midnight when I have to be at work the next morning is a perfect example of the sort of thing I shouldn't be doing anymore. I'm getting a little too old to be just keeping my head above water, rushing to prepare for the next meeting, always slightly behind and trying to hide my panic about it.

A friend of mine once taught me to eliminate distractions. I was getting better at it before I had kids. Then I sought distractions, desperately needed them, was gratful for them keeping me sane. Now I simply have too much on my plate.  I either need to give stuff up or manage it all better. I don't really want to give up on the blog. I still have the stories, but it is really about making the time.

How many times have I written a sentence like this?

Too many.

I haven't mentioned this yet because I am still quite surprised about it. It doesn't feel real to me. I'm going to BlogHer in August. I applied as a volunteer and was accepted. I am travelling, by myself, to San Diego for several days, and I will meet, or at least cross paths with, many of the bloggers I have admired who have long since established themselves and done something with the opportunity that I have allowed to pass me by. I am wondering what I will get out of it at this juncture, because I have been so disconnected from the blogging community lately, because I have been disconnected from my writing.

We joke about bucket lists and 40 x 40 lists. I am too old for the latter and hopefully not old enough for the former.

But one thing that has been on my life list since I was ten years old  (Tigger's age!) is that I wanted to be a writer. It is the one thing that has been consistent in my life, and one of the few things I have managed not to do.

I don't have to look too deeply to understand it. I have not honored the need to keep writing, because I did not want to fail. All the writing I have been doing lately has been for someone other than myself. I don't even mean my audience here, I mean my job, my volunteer work, my ghostwriting for others. None of it is helping me be a writer, or at least not a successful one.

I will be 45 in the fall. Back when I was 35 I felt that everything I did from there must count. I haven't always honored that. Certainly, I have done a lot with the last 10 years, including some things, like parenting, that I way undervalue. But time's awasting  and I must find a way to end the self-sabotage on this one, last thing.

 

Progress Made

It has been almost two months since we put our boys on the bus for the first day of school. 

It has become a tradition to take their photos each year before they leave. I started when each of them headed off to preschool for the first time, before they were even taking a bus. Boy, were they little!

Between sharing this year's photos with family and friends who mostly reacted with the obligatory "They're getting so big," and sitting at a meeting at the school when a flock of actual preschoolers paraded past the window, it is starting to sink in that my 8 and 9 year olds are not little boys anymore.

Granted, much of their recent behavioral maturity has to do with the prescription of ADD meds for both of them. They have had an enormous impact on the dynamics in the house, the flow of our weekends, and our ability to simply go on vacation.

They are also playing together a bit more. Sure, there's still plenty of sibling antagonism, but just yesterday I went looking for them, thinking the house was entirely too quiet, only to find them in their room playing a game. That it was a game of catch, in the house, I managed to overlook in favor of celebrating their mutual cooperation.

Their advancing grade levels are bringing more changes. As a fourth grader, Tigger can choose an instrument to play in the elementary school "orchestra." I had all sorts of ideas of the kind of instrument he was going to be attracted to, but the one he picked - the violin - surprised the heck out of me. He's super excited about it, too.

He's also playing soccer this Fall; really playing, not just rolling around in the net like a giant pillbug. He seems to far prefer defense, knows where he's supposed to be, and is usually there.  He played goalie last week, and for the entire half that he held that position, no one scored against him. I was amazed, and impressed.

I spent years worrying that this child would never express an interest in and aptitude for anything beyond a screen. He spent years fighting against doing anything remotely productive or educational. Reading? Bah! Karate? Hell no! TV? Absolutely, at every waking moment and whenever you are not looking.

Pumpkin is a second grader. I am trying to keep as closely in contact with the goings on in his classroom as it is possible for a working mother to do. When I made the decision to have Pumpkin repeat a year of Kindergarten, my biggest fear was that he would overcome some of the things that were holding him back, get to 2nd or 3rd grade, and be bored out of his mind. This may be the year. 

The first clue was the worksheet of coin values that he quickly filled in and had enough time left over to draw in explicit detail the head and tail faces of each coin, carefully copying out the words E Pluribus Unum, and other characteristics. The second was his mention of getting a bigger packet of math worksheets than everyone else. It is interesting that he has noticed this and I wonder exactly how long this is going to be the strategy for keeping him entertained.

I put it that way because this teacher has a reputation for being V E R Y  R I G I D! This was borne out on open house night, when Tigger's teacher demonstrated an exercise with parents using a technology she had just adopted and made her presentation interesting and interactive. Pumpkin's teacher passed out a list of rules.

Still, the start of school was so much calmer this year than last. I wonder if we are in that "eye of the storm" before they become teenagers.

 

A little slice of normal

A friend of mine used to tell me that I should be more forgiving of myself for not having achieved what was clearly expected of me early in my life and career. "After all," she would say, "look where you started from."

Since I grew up white, and fairly affluent, I would always dismiss this notion as lacking in credibility. Never mind that my family life left me utterly without confidence or most social graces. Peers with my kind of start in life, not to mention my intelligence, had accomplished far, far, more by the age of _______ fill-in-the-blank.

A couple of weeks ago, my employer hosted a company / family outing at Canobie Lake Park in NH. Tickets were $5 and lunch was included, and though I despise most amusement parks with all my being, I felt it was important for us to go.

Tigger gets to go to Canobie with his summer camp at least once a year, but Pumpkin has never been. Big crowds and new situations trigger his hyper-silliness which results in some bizarre and dangerous behaviors - like running away from us and deliberately slipping in between other adults so that to stay on top of him, I would have to barge through crowds and nearly knock people over. Then he has the nerve to get all upset with us when we lose him, which we have, briefly, a number of times.

It's the stuff heart attacks are made of, frankly. So mostly we stay away from those kinds of big parks, crowds, museums, and Disney World.

A whole lot of my childhood took place at Disney World (it was the only place my parents ever traveled for vacation), and I have never been able to bring my own kids. All other amusement parks pale in comparison to Disney World and although the boys are almost too old for it now, we still want to take them once, stay in the park, and do the trip right.

As Pumpkin gets older, he is starting to realize that his behavior is causing him to miss out on a lot of things. He sees his brother go off to camp every day, Pumpkin can't go because I don't trust him to follow directions, and I don't trust the teen-aged camp counselors to be able to handle him. During Scout or other activities, I frequently have to pull him out of the group and keep him in the back of the room so he doesn't disrupt the other children who are supposed to be paying attention. At school he has a classroom aide whose job seems to consist mostly of keeping him on task, and removing him from the room when his silliness becomes too much of a distraction for his classmates (this situation is a whole topic unto itself).

In spite all of this, I felt strongly about taking him to this amusement park / outing. We had plenty of time to prepare him, to coach him on our expectations. I have also been with my team long enough to forewarn them of Pumpkin's erratic behavior and its likely causes (the park was so crowded we didn't run into any of my immediate co-workers anyway). We've been trying to do more things as a family lately, and though not perfect of course, things are getting better.  We impressed upon him that this was a test to see if we were ready for Disney.  And. And.

And, we have started Pumpkin on ADD meds.

Again, this is the subject of another post, but for now, I'll just say that while it's not the dramatic difference we saw in Tigger. It's different enough.

For a hot-as-hell day at an amusement park, things went remarkably well. Pumpkin stayed with us, he came back immediately when he got called out for getting too far ahead; no arguments, no tantrums. He waited in line with more patience than I have ever seen in him. There were minimal disputes between the two boys. I fought off the vague nausea that I get at amusement parks (even before I go on any rides). I sucked it up and went with it because it was important for the boys to have an experience that many other families get to have without thinking about it.

Most of the time, I'm not the kind of person who thinks that "normal" is something to aspire to. Normal is usually either boring or mediocre. Normal is not enough.

We have crossed the seven year mark as parents of special needs kids. They don't look like special needs kids, and the other parents looking at me cross-eyed over their behavior clearly don't know or maybe don't care that they are, but they are. The fact is, these two boys started from a very different place than many of their peers. It's easy to forget that in the heat of exasperation.

In our family, a little slice of normal is an accomplishment.