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.

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!

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.

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!

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.

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!

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.