Friday, December 11, 2009

Peace on earth, just not at our house

I'm not feeling very merry this holiday season. It seems like I'm going through the motions, doing what I always do, not really enjoying it or loathing it, just sleepwalking. I find my mind is consumed with doubt and worry at the moment, and I don't quite know how to let the joy of the season push the other stuff out of the way. Everywhere I'm seeing the word "PEACE"- on cards, in ads, in holiday displays, and that's something I'm not feeling, but really long to.

I'm worried about our family. I'm worried about Sam struggling, which is nothing new for us, but now something else has crept in- my attitude has gone from bad to worse, and Tom is really stressing out. Bad days at school, inappropriate language at home, huge disproportionate blowups over seemingly insignificant things have left us feeling beaten up and defeated. Like nothing we try and no strategy we use seems to have any effect. It's like I see Sam slipping away right in front of me, and I don't know how to stop it. I feel weary from constantly "tweaking" things. For maybe the first time in 8 years, I'm wondering "Why me?" What did I do to deserve this kind of life?

Everywhere there are images of perfect families enjoying the holidays. They are in the cards I receive, in TV commercials. My friends' kids are singing in concerts, playing in ball games, writing out lists to Santa. My kid cannot even regulate himself enough to be in the same room with another child without blowing up. We've had two disasterous playdates this week. My heart is breaking because I see Sam shoving people away with two hands. I'm VERY thankful for the support of my loyal friends who hang in there with me, even when the going gets rough. I'm wondering how much more of it I can take. I fear that Sam's life will be religated to living with Tom and I forever, hanging out in his room because he has no friends, no job, no prospects.

What I want to know is, when does all this RDI, ABA, any other therapy kick in? We see flashes of it, but when the chips are down and learned skills should be put to good use, they go out the window, and we are back to square one. I feel as hopeless as I did during Sam's kindergarten year, only now it's worse, cause I feel like so little progress has been made from all this hard work. I know that there will always be setbacks, that life is really one step forward, two steps back. I usually am able to accept the situation for what it is. I'm usually able to see the silver lining in everything, and usually able to see the positive affects that Asperger's Syndrome has had on our lives. I'm looking for the strength to get to that place again, and wishing for a little peace this holiday season!

Tuesday, December 1, 2009

The Game Club

It's already December, and things at school are still pretty difficult. I'm trying not to let it drag me down, and instead I'm brainstorming new solutions. It's been pretty apparent to me for awhile now that one big issue we have is our limited exposure to NT peers. Sam is, after all, in what is definitely a self-contained classroom environment, his extra-curricular activities are limited to those that are fully supported, he doesn't invite kids over after school, nor does he know anyone enough locally to do that. So, we exist in the special needs bubble. It has long bothered me that there is no integrated solution- sort of like an inclusion classroom for after-school activities. So, we are going to create our own.

Enter the new "Game Club". I've convinced 2 of my most-trusted friends with neuro typical kids to be my co-founders. The concept is simple- meet in a small group (3 kids, 2 moms) once a week to simply play some kind of game. It can be a card game, a board game, an action game- anything just as long as it has rules and the participants each have some kind of protocol to follow. Sam and I have been practicing at home playing UNO. It has gone from being an abject disaster 6 weeks ago (Sam not being able to sit long enough to play a hand, having a meltdown when he loses a hand, playing by his own version of the rules) to being a big success about 90% of the time. Sam now plays by the rules, he sits and manages his own cards without me seeing them, and he can handle defeat fairly gracefully.

The purpose of the game club is quite simple- let Sam hone his social skills with neuro typical kids he knows, in a comfortable, sheltered environment. The comfort level for both Sam and I with these friends is very high- no judgement, no explaining, no fallout. We stay and play as long as it's a success. When things go south, it's time to wrap it up for the week. Slow and steady wins the race here. It will probably take months of visiting alternating friends' houses, but this is something I should have done long ago!

Once again, I am indebted to my wonderful friends. They continue to go above and beyond the call of duty to help us out. I don't know how I got so lucky- I wish I could say that I would be as understanding and accomodating if the tables were turned. They have saved my ass so many times that I've lost count. This is something that I am truly thankful for.

I hope to report back in a month or so about the progress of the game club. I fully expect it to take awhile to get into the swing of it. "Repeat, repeat, repeat" are words to live by when it comes to teaching Sam new skills. I guess one of my mistakes in this is not really comprehending that teaching Sam effective interaction with peers falls under the same skill category as getting dressed or learning to use the microwave. Taking the emotion out of it and replacing it with simple, bare bones instruction seems to make it much more manageable. Instead of me wondering why he is mean to kids to gain their attention, I should be thinking of it in terms of a user's manual. Master skill A before moving on to skill B.

Well, we'll give it a try.

Monday, October 26, 2009

Cracking.....

Toady is one of the those days that it's incredibly difficult to be the parent of a child with Asperger's Syndrome. Sam is going through a really defiant stage lately- lots of "I hate you!", "shut up!", "I'm not going to listen to you!"- I'm sure you get the picture. We've been plugging along with our normal disipline routine- be as non-reactive as possible, give frequent resets, even loss of computer privileges. The problem doesn't seem to be improving at all. This morning after I had heard about the 10th argument over something I asked him to do (which included everything from whining to screaming to verbal abuse on his part), I pretty much lost it. I threw his backpack at the front door and told him to get out of the house and wait for the bus. Of course now I feel a whole lot worse for the way I handled it.

We all know that feeling when we are getting close to losing it. Even the most patient among us has those moments. It feels like momentum grips us and we are propelled ahead and over the cliff, not matter how aware we are that it's not the right thing to do. We know this is true of Sam. Whenever a situation with him starts, if it isn't immediately put to a halt, it only escalates and can become 10 times worse. This, to me, is the very root of the problem behaviors. I keep going over and over in my mind ways to put a stop to the escalation. I feel there has got to be a fundamental way to do this that so far I'm missing.

I don't feel proud of myself and I definitely don't feel like I'm doing a good job when I lose it. I realize that I'm only human and one can only hear so much of "I hate you!" before it starts to wear you down. I try to give myself a break- I'm not perfect, I'm just a mother that is scared to death for the future of my son. I keep waiting and praying for the lightbulb in his head to go on. When is he ever going to get it that being so reactive is not going to get him anywhere? When is he going to start accepting that things can't go his way 100% of the time, not everything he does is going to be his idea, that other people have feelings? This is something that makes autism so hard to deal with. What motivates Sam and what goes on in his mind as far a logic and what makes sense is so hard for me to wrap my mind around sometimes. I feel like if I could just understand, I'd be able to so much more effectively parent him.

Motivation to do the best I can for him is always driving me. Even when I fail miserably (like this morning), I'm still driven to improve. Part of my brain can't believe that the child I have guided for 8 1/2 years could be on the brink of being out of control. But then I realize that all bets are off in this situation, and that plain common sense is only a small fraction of what goes into handling this problem. I guess the next step is (after allowing myself 15 minutes to wallow in self-pity, is to get back on the horse to try again.

Friday, September 18, 2009

A friend in need.....

We have some friends who are dealing with a crisis involving their child this week. It's not a life-threatening crisis; more a life-CHANGING one. And I mean that in a lemons-to-lemonade kind of way. How well I recall the feeling of thinking you know your child, then having them blind-side you and do something you would not think them capable of, in your own adult-experience way. At the time it's one of having the rug pulled out from under you, upsetting whatever teneous hold you have on "normal". (oops, there's that word again) After having time to reflect, you realize that you have look at the situation not through your eyes, but through your child's. It's not really a matter of knowing your child, it goes deeper. It's realizing what motivates them, and how they interpret all that. Always tricky with a spectrum kid, but sometimes equally tricky with NT children, as in our friends' case.

But I digress. My real point in posting about this is that I feel like I've become a parent resource. I'm here to tell you that this is something I'm proud of, not complaining about. Tom and I have worked so hard (and continue to work) over the past couple of years, that it's such a compliment to think that friends would actually seek us out for advice. First there's getting over the hurdle of realizing that the RDI training we have received can really be applied to so many situations- not just the ones that result from the Autism Spectrum. Then there's the thought that people look at our family and appreciate the hard work we do and see that it's actually having a positive affect on how we live our lives.

It makes me so happy to see the effects the RDI program is having on our family, and it makes me even happier to be able to offer suggestions to people who are struggling with important issues. It's like a widening of the circle of influences all around. Our friends have a lot of work to do to restore peace to their family, but we know that the hard work is worth it. It took a crisis or two to get us where we are today, and really it was a blessing in disguise, as I hope is the result of what our friends are going through.

Friday, August 14, 2009

Feelin' optomistic

Today is Sam's last day of school with Ms. Breeyear and his old classmates. I have to say that this day is feeling much less bittersweet to me than I expected. I remember thinking in the fall of 2007 when things started to "click" with Sam and his school situation that I was going to have the luxury of 2 whole years relatively stress-free, and that I was going to thoroughly enjoy it after the hell that was kindergarten. Well, I'm happy to report that I DID enjoy my stress-free period, and I'm still feeling pretty relaxed leading up to the change in schools and situations this fall. We all knew there would be a change of school, classmates, aides, therapists and teachers for third grade, but I believe we are headed into the best possible scenario for Sam. After meeting with his new teacher, Mrs. Geis, I'm feeling confident that she is going to be a good fit for him personality-wise, and definitely experience-wise. From the descriptions we have heard of the class he will be going to, it seems as if it will be even more tailored to his needs than the previous one. I feel confident he will be challenged to learn up to his full potential, in an environment where he's accepted and where his gifts are appreciated. I'm certain there will opportunities for him to make friends, and for us to connect with other parents. If this new class is even half the well-oiled machine that the old class was, it will be just fine.

I can't say enough good about the class he's been in the past two years. At the time we found this opportunity, we were struggling to find balance in so many ways. School was an utter disaster, our home life was chaotic, we didn't know what path to go down. My feelings of frustration were consuming me- here I had this bright, friendly, energetic, polite, and happy kid whom nobody could come up with a way to manage. My heart broke when I walked into his kindergarten classroom and found his desk isolated from everyone else's. It was so hard for me to keep my eyes on what I KNEW was true- this kid has potential to do something truly special with his life- when so many continually tried to drag me down. So to realize where we are two years later is especially gratifying to me. To see what I knew in my gut back then taking shape now is so wonderful. We owe a lot to that team at Bradt school. Under their system and with their experience, Sam found himself in a school environment that allowed him to be himself, yet still grow academically and most importantly socially. We have seen so much personal growth in the last 6 months especially. In April, when new, younger students transferred into the class (a situation that Sam had struggled with in the past), his teacher voiced concern to us about how Sam would handle it. Well, he really handled it just fine. Not only did he not regress in his behavior, he actually was able to recognize the differences between himself and the younger kids, and what might be triggering their difficulties. His teacher reports that he has been a big help in the classroom. Amazing what true, trained professionals in the correct environment can accomplish.

We also owe a lot to our RDI training and our consultant, Theresa. Her guidance has been worth every penny over the last 18 months. RDI has made such a huge difference in our day to day lives and it's given me confidence that we can get through just about anything the future holds. Just the feeling that we, as parents, are in control, is so gratifying and empowering. Having a third party to "coach" us has made it much easier for us to critque ourselves and each other, and it also feels good to know someone has got your back if you feel things aren't going quite right. So much of Sam's personal growth can be attributed to us working with him under Theresa's guiding hand.

So, while I'm sad that one era is ending, I can say that it feels right. The time has come to move on, and at peace with that natural progression. Besides, he can potenially stay in THIS class for 3 years!

Saturday, June 20, 2009

The Green Raindrop

Lately Sam has been talking to me about something he calls "the green raindrop". The way he portrays it, the green raindrop is something inside his brain that "tells" him to do things that he knows he shouldn't. He has cited examples of mis-deeds from kindergarten (2 years ago) that the green raindrop compelled him to do, such as destroy something some other kid made. The fact that he is contemplating such things so far after the fact indicates some kind of awesome personal growth on his part. Sam has never been the kind of kid to verbalize his deep insight (although I know it's there), so the "Green raindrop" talk has kind of been a break through for us. I've often thought to myself that the reason Sam has Asperger's Syndrome is because he would just be too damn perfect if he didn't. I've always sensed that he had a strong desire to do the right thing, but just was not able to, due to his "disability". The presence of the green raindrop seems to confirm my belief. Since we have seen a diminishment of the kind of behavior that the green raindrop condones in recent months, I asked Sam if the green raindrop was either gone or in a better mood lately. His reply was that the green raindrop was always angry, and that he hadn't gone away. I don't think he has it in him yet to verbalize the fact that he is maturing enough to control the impulses of the green raindrop.
Sam and I have had some meaningful dialog on a few topics of late, not just the green raindrop. He's verbalized to me that he has some anxiety about starting third grade in a new school setting, which is HUGE for him. Prior to this, his anxiety about new situations has always manifested itself in actions and reactions to his environment. Now, I don't for a minute think that just because he is talking to me about his feelings about being a third grader that it will make the transition easier. I fully anticipate that we will go through a rocky period in the fall when he starts at Westmere. The difference here is that for once he is verbally acknowledging his anxiety, which I consider a big step on the road to self-awareness and awareness of the world at large.

Monday, May 25, 2009

Wanted: Friends with "alternative" lives

Those of you who are regular readers of this poor excuse for a blog are familiar with my ever-evolving quest for answers to the normal/not normal debate. Though I know that this is something that I will probably revisit in the future, at this point in time, I feel like I've come to terms with it. I'm learning to accept and embrace the Dougherty family's version of normal. I'm actually thinking it's pretty cool. One problem- I'm feeling like I'm not surrounding myself with enough people who also live their own pretty cool version of normal. I know that everyone has their issues, and most people would in fact say that they have this problem or that, and they are doing whatever to compensate for it, but what I'm talking about it people who actually walk the walk, instead of just talking the talk. I can remember endless conversations with a former boss of mine who was always half lamenting/half thrilled to death that he wasn't fitting in within his suburban neighborhood. We used to discuss how both of us felt like oddballs- he because he worked 15 hours a day trying to make a go of a small business, and me because I was 35 and childless (by choice). Finally the day came when he divorced his wife, moved out of his suburban house, bought a little house in the country far away from everyone and is finally at peace with his exisistance. I got pregnant, had my son at age 38, learned he had Asperger's Syndrome, and have spent the last almost 4 years trying to get a grip on it. I've come to realize that having a child that is differently abled suits me on a lot of levels. Whenever I hear my group of friends relate their stories of carting kids back and forth to the ball fields, signing up for this or that school duty, etc., I inwardly cringe because I know none of that is anything that I would enjoy doing at all. Having a child who is differently abled gives me a pass to get out of that stuff. Instead, we choose alternative things to get involved in that we never would have been exposed to had we not been sent down this path by a higher being. What I'm looking for now are others who are comfortable in their own alternative lives- who embrace the "differentness" and see it as a blessing that expands their horizons and brings joy to their lives in ways they never could have expected. I'm looking for parents who work as hard as Tom and I do, who appreciate everything they have and band together when times get tough. I know these people are out there. Make yourselves known!

Thursday, April 2, 2009

Somtimes I feel like I'm dealing with Helen Keller....

And today is one of those times. Everyone remembers the story of Helen Keller, who was blind and deaf, and her teacher, Ann Sullivan, who became the one to finally free her from her world of isolation. I sometimes feel like Sam is unreachable. I struggle during these times like Ann Sullivan must have struggled, having the knowledge as teacher about what she wanted to teach, but unsure about how to get the information to her student. Sam is going through a period right now where he is obviously struggling with something internally. It's manifesting itself in escalating behaviors at school, back talk and screaming at home, and basically melt-downs at every moment when he is challenged or frustrated. I wish it were a matter of being able to sit him down and ask him what is bothering him. It's almost like he doesn't conciously know that something IS bothering him, let alone put it into words. Instead, little things that don't ordinarily cause distress (like a trip to get a hair cut) produce a 1/2 hour standoff and tantrum. I feel like I continuously search my brain for some way to get through to him during these episodes. I feel so inept- what can I do to help? We try to tighten up on the limit-setting, we try to spotlight good behavior, we try "re-sets". Still the short fuse remains. It kills me when I get to the breaking point, when I've heard screaming for the 10th time in one day, when I hear him arguing with everything anyone says, when the expectation sheet comes back from school with yet more dashes. I pray constantly for strength to be able to ride it out. I pray that I can someday do what Ann Sullivan did- find a way to penetrate a pretty stubborn wall of resistance.

Tuesday, March 31, 2009

My favorite day of the year

Tomorrow is the one day of the year that I dread above all others. It's the day when Tom and I have to beg and plead for our son to receive the education that is appropriate for him. Seems pretty simple, right? What most parents take for granted, the "free" public school education that children get every day with barely a thought from anyone, is not so free for us, in terms of time and energy spent. Each year I worry myself into a frenzy over something that by definition should be a pleasant, or at least, tolerable and business-like, experience. A committee is set up to determine how best to educate a special needs child. This committee should, theoretically, have the best interest of the child at its heart. (remember that "no child left behind" thing?) Due to my inherent distrust of people in general, I find it hard to believe at times that anyone on the committee save for Tom and I has much interest in what's best for Sam. Of course this varies from year to year, from school to school, and from team to team. This year I feel like we are in pretty good shape- there's Tom and I , and then the team currently working with Sam, whom we are in agreement with about next year's placement, the team that spends 6 hours a day, 5 days a week with him, and have for the past 2 years.

Then there are the ones holding the purse strings. The ones who have only seen Sam on fewer occasions than there are fingers on one hand. The ones who administer tests that will claim to tell someone anything they would ever want to know about a child. The ones who know what children with Asperger's and Autism are "supposed" to be like, and what is "supposed" to work for them. These are the people who have been instructed by the people whose job it is to spend taxpayer money to save as much as they can. So I don't believe that my son's success is their first priority.

I think back to my first CPSE meetings, realize how woefully ignorant I was, and thank God that someone up above was looking out for me. I feel like it's pretty miraculous that we've been as successful as we have given our lack of experience. One good aspect of all this is that with each year that goes by, and with each experience I have, I learn something new. I've always kind of gone with my gut feelings, but now I feel like I'm gaining knowledge to back up what I've always felt was right.

So while I still dread having to go through all this to get something that should just be a no-brainer, I realize that anything worth having is worth working hard for. I will walk into the meeting with my game face on, and with confidence that no matter what, I can let my gut and my true interest in Sam's well-being guide me. It hasn't steered me wrong in 4 years, so I'm gonna stick with it!

Monday, March 16, 2009

Toggling between two worlds

One thing I constantly struggle with in my quest to make a success of parenting a special-needs child is the challenge of indentifying where we fit into the world. Are we members of the special needs community? Are we functional enough to embrace the realm of the "normal" world? Does it even matter? Of course the simple answer to this dilemma is that we exist in both worlds to a degree.

I have to say I feel quite comfortable as a member of the special needs community. A lot of my associations have to do with people who are dealing with family members on the spectrum, as we are. These people have seen it all, and not much rattles them. Certainly nothing my child could do would make them bat an eyelash. There is bound to be a sympathetic ear, and someone will always have a story that can top your worst experience. You can't buy that kind of acceptance, and it's really worth a lot to me. Another thing I feel is an advantage about belonging to this community is that it gives Sam a safe environment in which to shine. People who are "like us" see Sam as a star- verbal, literate, upbeat personality. They are less apt to define him by his "issues".

There are, of course, negatives to it. The biggest one is that you usually have to go out of your physical community to make connections, so geographically you may not be able to be in the environment as much as you'd like. Also, there is a whole big world out there that is not included here, so at some point you have to come out of the protective umbrella and venture out into the world.

The normal world makes me uncomfortable on a lot of levels. Lately it seems to be getting harder, not easier. Back when Sam was 4 and did something like throw something, or run away, or lay on the floor in the post office, it was fairly easy to explain away to curious on-lookers. Now it's more of a challenge. My fear of not being able to handle the stares, rude comments, or rejection of "normal" people makes me gun-shy of trying new things. I often wonder (say, maybe 10 or so times a day) if I'm doing Sam a grave disservice by not exposing him to more "normal" world activities. Instead of signing him up for soccer on a town team, instead I choose to have him take swimming and golf lessons from STRIDE. Instead of putting him a cub scout troop, I choose to sign him up for a social skills group for special needs kids. Is this wrong? Should I be accompanying him to "normal" activites, knowing that I would have to be by his side 110% of the time to make sure it worked. Doesn't this defeat the purpose of the activity?

I know people with spectrum kids who spend very little time in the "special needs" world. Maybe their kids are just better equipped to deal with more "typical" activities than mine is. It makes me sad to think that Sam might be missing out, but then in nearly the same thought, I know I shouldn't wish for something that isn't possible.

Does all this matter? Most of the time I think I come to the conclusion that really it doesn't. What we need in this family is a healthy mix of the two worlds. I'm still struggling with getting out of my comfort zone and pursuing those kinds of "normal" activites that would be appropriate for Sam. If they are out there, I want to find them. In retrospect, maybe I've always kind of struggled with what was "normal" and what was "not". I used to feel not normal because I was so on-the-fence about wanting a family to begin with. Now I feel "not normal" because I'm not able to balance my life the way I want it. I think way back long ago, I tried to convince myself that there is not just one definition of normal. We as individuals can determine how we choose to live our lives, what paths we follow. If we choose to live an "a la carte" kind of life, picking from different communities, activities, friends, situations, that should be our choice. There are people who never choose to leave where they are most comfortable. I want to make the choice to keep pushing myself to walk out of my comfort zone and find the best opportunities, no matter which world they are in.

Wednesday, February 25, 2009

There's power in being positive

No, I'm not talking about those people who go around saying "Have a nice day" and always seem to have an insincere smile on their face. I'm talking about being positive with your child, for a refreshing change. All of us who are parents are all too familiar with those moments when your child does something you didn't see coming, usually in public, and we long for the floor to open up and swallow us. For those of us with spectrum and ADHD kids, this is territory that we learn to deal with, all of us a little differently. I've always been from the school of removing the child from the area, and dealing with it either at home or someone away from the general public. Happily, the Nurtured Heart Approach is giving me some tools to deal with these situations much more comfortably, and maybe even lesson them so I won't have to deal as much!

You see, in this house we have adapted a zero-tolerence to negativity. Not a zero tolerance to consequences for inappropriate behavior; instead we have taken a vow not to get sucked into the big, vapid vaccum of the scowling, yelling, begging, bargaining, bribing, lecturing, door-slamming brand of "discipline". We have basically vowed to erase these ineffective strategies from our lives and instead substitute something that seems to be taking root, growing, and actually working- being positive.

I think that overall our society is very negative. Just look at the news. Sure, some "feel-good" stories are thrown in for human interest, but the lead stories are always negative, doom and gloom type stuff. People who complain get lots of attention. Those who "go with the flow" or actually dare to praise someone or something are forgettable. To be sure, this attention is of the negative kind (of course), but it's still making a statement like "I'm being acknowledged- I matter! People are listening to me!"

Think of how that translates to our kids. If the only time they are getting BIG TIME attention from us is when they are misbehaving, this is gonna become the vehicle by which they define themselves. They think they get the most bang for their buck when they are bad. Think about how animated and "in the moment" you are when you are mad. Compare that to how sedate you are when spending "normal" time with them or even praising them. Even if we try to go over the top when giving them positive feedback, it somehow seems fake or too scripted. (like the overly-positive person described above).

Those of you that know Sam have seen that he is one of those kids that feeds into negative attention. Many times in the past he's expressed how he can't wait to tell someone how badly he did that day in school, or what he broke or disrupted. Clearly he is looking for the big reaction such revalations usually generate. In the past, I've felt pretty helpless in these situations, wondering how to break the cycle and turn things around.

So that's what we are doing, breaking the cycle. Making an effort to observe Sam in his day to day activities, make specific comments about what he is doing and how it contributes to the kinds of things we want him to do. We've seen a decrease in "problem" behavior overall in the last couple of weeks, an increase in his independence, and he's even been observing and commenting positively on the things that Tom and I do!

Even without any observed differences in Sam's behavior, I still would be feeling good about this approach because of the way it makes me feel about my parenting skills. I no longer feel helpless when confronted by the kinds of doubt I had when I wondered how I could help Sam get over the hump of feeling so negative about himself. I know that I am actively creating situations for him to succeed, and pointedly down-playing the ones that are not so successful. He still gets a time out when he has crossed a line, but now the time out is meant more like a break from creating successes. He's learning that in order to get back to being able to receive positive feedback and get connected with us, he has to serve his time out well, then get back in the game. I feel so much better knowing that I don't have to waste my time doing all those disipline things that never worked with him. No more yelling, and then feeling like crap after doing it.

Nothing is perfect of course, but I'm so excited about the change this approach is bringing to our family.

Friday, January 30, 2009

Connecting

One of the things I've experienced continously since my entrance into the "special needs" community is the basic need that most of us parents of "different" kids have to connect with others who share a similar exisistance. It happens everywhere I go that I enounter parents of kids on the spectrum. I can say from experience that there's nothing quite like the comfort of chatting with someone who "gets" what you go through, who can relate to the stress of an IEP meeting, someone who is probably trying to juggle dealing with their child while conversing with you, and who understands why you can't just drop your kid off at the birthday party like other parents do. There's a comraderie there that makes a stranger intimate almost immediately. Whether these chance encounters lead to lasting friendship is another matter; the initial "attraction" is a strong bond.

I think all of us in this situation are craving the same things: someone to talk to who gives us the look of recognition, more and better information about what we can do as far as interventions, and additions to the support network we all want to build around us. Those of us in the special needs parenting world can't simply go to the neighborhood block party and start talking about our kids in the traditional way and expect it to result in a life-long friendship. That conversation might go something like this: Neighbor: "We had baseball practice yesterday and Johnny hit the ball out of the park 4 times. Our team will be hard to beat this year." You: "My Jimmy threw a pencil box at a teacher and had to spend the day in the principal's office. He really didn't get, nor care, why he was there. The school is talking out-of-district placement for him for next year." Based on that conversation, you probably aren't going to get calls for many playdates. But another conversation, taking place just about anywhere you might encounter a parent of a child on the spectrum, like maybe a tae kwon do class, might go something like this:
You: "My son spent most of his kindergarten school year in the hall, cause the teachers didn't know what to do about his "disruptive" behavior." Other parent: "The school has suspended my daughter for being "agressive" and having anger issues. When can we get together for coffee and discuss strategy?"

My point here is that the need to connect is universal, in every sphere. Those of us who live with special kinds of kids just might feel the need more acutely, since there aren't whole neighborhoods of us. We seek each other out. Which is where the internet comes in. There's a great discussion about the internet community of "super-moms" taking place on John Elder Robison's blog. Read for yourself: http://jerobison.blogspot.com/2009/01/supermoms-and-mom-empowerment.html

The internet has become the "neighborhood" for moms of special needs kids. We can converse with people far and wide, from all different countries, circumstances and walks of life. The internet makes the gathering and diseminating of information so much easier, more convenient, and satisfying to do. Anything that can be done while wearing a bathrobe is ok with me!

For my part, I'm gonna keep to my New Year's resolution to reach out to people and provide them with any ideas or suggests I can. If you happen to "see" me anywhere- either in the flesh or on line, just know I'm here to listen and help!