A day in the life......

Ok- so the "once a week" writing thing hasn't worked out as I had planned, but I hope to be better about it in the future. I thought it might be fun to write an entry about what our typical days are like here at the Dougherty house, from the point of view of what goes on in Sam's life, of course.

We usually get up around 6AM- Sam is buried under blankets and stuffed animals and usually wakes up talking a blue streak (which we are trying to tone down a little bit these days). We all hang out down in the living room, drinking our juice and coffee, watching the news and weather, and reading the paper (when it shows up early). I prepare Sam's breakfast (these days a corn muffin, yogurt and applesauce) and then his lunch. Sam eats breakfast while watching "Max & Ruby" on TV, and usually while drawing or writing one of his numerous books. Sam washes up, brushes his teeth and gets dressed after this, then he goes downstairs to pack his backpack. He usually has a few minutes of free time before the bus comes. Jack the bus driver and Pam the bus aide pick Sam up about 7:25 for the 45 minute ride to Rotterdam. The school day starts off with breakfast, then the class meets for some circle time. This year they've been doing "centers", a different activity with each of the aides (Jim, Sandy and Stacy), the social worker (Angie) and their substitute teacher (Mrs. Conlon). Sam has been bringing home reading comprehension exercises that he does in school- read a story, then answer questions about it, and draw pictures relating to it. He has math tests in school, and usually brings home math homework each night. He enjoys gym the best of all the specials, although he often talks about the songs they sing in music. They have free time at the end of the school day that they have "earned" through good behavior. He usually arrives home around 3:15PM. The bus rides so far this year have been uneventful, and he's handling the distance and time on the bus well. Usually when he gets home from school, he wants a snack of some type, and he goes on the computer for a timed 15 minutes, or continues writing his book started in the morning, or watches a taped TV show from earlier in the day. Sometimes we'll drive to visit friends somewhere or walk to the library, or ride bikes. He usually does his homework right before dinner- it generally takes him about 5 minutes! He sometimes helps with preparing dinner or setting the table. Dinner is around 5PM. I'm happy to say his food preferences have matured somewhat. While he still mostly eats a seperate meal from what we eat, he now eats most kinds of fruit and a few vegetables. We are stressing the point that "big 8 years olds eat the same thing that their parents eat at dinner!", since he's been on a kick lately telling us the kinds of things 8 year olds do, in anticipation of his 8th birthday in March. After dinner he has 15 more minutes of computer time, then we often play a game or go for a walk. Bedtime is usually around 7:30, sometimes later. Lately he's enjoying having me read to him from "The A to Z Mysteries"- chapter books about 3 friends who solve mysteries that crop up in their small town. He almost always goes right to sleep, listening to NPR and thumbing through books.

It's not just us!

I was having a conversation this week with one of my friends who is having problems with her age 9 NT daughter. She made the statement that "When she was a baby, I felt like I was the best mom. Now I feel like the worst!" I could relate a lot to what she was saying, remembering times when I felt like I was searching my brain for any possible way to make Sam "get it". The frustration involved with trying to be an effective parent when we can't figure out why our child is acting a certain way is probably the worst I've ever felt. You basically feel as if you have no control over the situation, that despite your best efforts you have failed to get through to your child on some basic level. Feelings that things are out of control are probably right on the money. It took our RDI consultant to help Tom and I realize that the control of the house was really in Sam's hands, and this gave him so much anxiety the resulting behviors were usually somewhat less than ideal. I've tried to give my friend advice based on our experience. Parental control is something all of us deal with, whether we have a special needs child or not. I advised my friend to start by controlling HER reaction to how her daughter is behaving. No sense adding fuel to an already burning fire. I also told her to take it slow, and not to beat herself up if she does "lose it". Since Tom and I have been trying to wrestle control back from Sam, I've found that my first reactions to incidents these days are a lot more controlled than they used to be. I'm actually remaining calm and dealing with things in a more methodical way than showing lots of emotion and getting all upset. So, for those of us that sometimes feel alone in the world of raising a special needs child, it's nice to know that many parents of NT kids struggle as well. The very fact that my friend wants to make a change to the way things are going at her house indicates that she is willing to change and make the adjustments necessary. In the end, most parents have a lot more similarities than they do differences.

A shout out to my "sisters"

In an effort to be a more consistant "blogger", I'm posting my second entry in a week! (we'll see if I can keep it up!) I've been doing a lot of thinking about my group of friends lately. I really would not be as sane and as level headed as I am if it weren't for this group of 5 ladies. For the last 6+ years, they have grown into my extended family. They have seen me at my best and certainly at my worst. They've witnessed me morph from an uncertain mother of a toddler into a (semi) confident parent of a very unique child. I owe them a debt of gratitude for so many things, but a few deserve special mention. They have always been there for me, and have never seemed freaked out or troubled by me dumping any number of problems on them, even though most of them can't relate personally to what we go through on a daily basis. They have always made Sam (and all of us) welcome in their homes, camps, schools, etc. I will never have to worry that Sam won't have a friend, because he does- 10 of them to be exact. These kids are more than friends. They have grown up always knowing each other. Of course they pair off and some like others better or get along with one another differently at different times, but I would be willing to bet dollars to donuts that if you were to ask any one of them if Sam were their friend they would say yes without hesitation. The feeling of having a support system around me is beyond description. Knowing that someone is just a phone call away is often just what I need to get me through. Now, we sometimes have to struggle a little bit to see each other these days what with kids in all kinds of activities, finding jobs, keeping old jobs, juggling home committments, but the dedication to each other is still there. Things are not perfect. We've had our disagreements, fallouts, arguements, and misunderstandings. I've come to realize that people can't annoy you so much if you don't care so deeply about them. Some of us don't feel as close to each other as we once did. People change, places change. Change is going to happen. What I hope won't change is the fact that somewhere out on this planet are 5 gals who mean the world to me. I just want to count on picking up where we left off when we meet again!

Back to school, 2008 style

Welcome to the first day of school, 2008. This is a year unlike any other is our previous existence. This is the very first back to school day that I didn't wring my hands over, stay up nights worrying about, or just plain dread. Of course there have been varying degrees of these negative feelings over the years, but I'm happy to share that I'm feeling none of them this year. Instead, I'm feeling confident, happy and very postitive about Sam's school sitation for second grade. The feeling must be contagious because Sam was feeling very upbeat this morning, too!
Of course we've traveled all over the "I don't want to go back to school" and "I want to stay home" attitudes for the past couple of weeks, even up until last night, when Sam had a tough time getting to sleep. (unusual for him) But this morning he put the nerves aside and was thrilled to proclaim to us this morning "I'm a second-grader!" He was dressed in his new Wall-E t-shirt and putting things in his backpack before I was even done with my coffee! We took some pictures out on the front porch as is our first-day-of-school custom, and watched kindergartner Olivia down the street wait for the bus for the first time. Then it was off to Bradt, a 1/2 hour drive that seemed to go quickly after not having driven it all summer. We counted 24 school buses along the way. It was so comforting, for me, parking in the familiar parking lot, going to the familiar door, saying hi to Mr. Jim and Miss Sandy. I'd have to say my favorite part, though, was seeing Sam's excitement in greeting his friends. He told them that he had missed them, and talked about some of the things he had done over the summer. Never mind that he just left most of them 3 weeks ago, but isn't this what NT kids do when they go to school? Excited to be wearing new clothes, interested in their friends' summer stories, glad to see their teachers? These are some of the emotions I can remember feeling when I started school each fall all those years ago. My absolute favorite part of the morning was when I had to remind him to give me a kiss and hug as I was leaving. The very fact that he was so caught up in his environment that he was forgetting to say goodbye to me indicates that we are moving in the right direction. I think about how different I feel than when I first left him at preschool, or when I was a nervous wreck putting him on the kindergarten bus. This feeling of first-day-of-school optimism may only be good for this one year, but I'm really enjoying it and counting my blessings!!

Guided participation (or how I'm learning to let go!)

Our RDI consultant recommended that I blog about my feelings of difficulty with "letting go" of doing everything for Sam. I'm sure that this is a topic that every parent struggles with, not just those of us that have kids with special needs. I wonder if it would be any easier for me if Sam was NT. I'm thinking probably not- but the difference might be that he would have more built-in motivation to take his activities to the next level, he might pick up on cues from other kids better, and he'd probably be more heavily influenced by the outside world. (not that that is a great thing!) I commented to our therapist that every time I'm involved in an "activity" with him, I find myself really wanting to do things for him that he is not able to do, or has not done a lot of. I know this doesn't do him any favors, so I'm really trying to fight this. I think the key to it all might be "scaffolding" our activities better. I read a really good quote from an article our therapist gave us that has got me thinking. "Our goal in RDI is not to focus on what your child can do, but instead focus on what your child can almost do." I don't think I ever thought of scaffolding an activity based on this. I believe my focus has always been providing an activity that would foster connection between us. I never thought much about whether it was something he could already do or not. Of course one of the things we are trying to do with RDI is increase the connection he has to us, and ultimately to other people, but also it's about competance and gaining self-confidence. My impulse to go ahead and do everything for him is partly because it's habit, partly because I want to get it done (probably my worst downfall when it comes to RDI is that I have a hard time taking my time with things), and partly because I feel like it's part of my role as his mom. This last statement looks pretty dumb in retrospect because it's also a mom's job to recognize when to pull back and let their child do for themselves. Maybe I'm a bit over protective. I know the thought of Sam going into a situation where he wouldn't have the maximum of support terrifies me. (for example, returning to CES). I really need to take a look at setting up situations to work on those things he can "almost do". The more small things he becomes competant with, the more large things he'll be better equiped to deal with. The time to do this is now.
A great example of my difficulty in letting go is the bus transportation situation to school. All last year I drove him to Rotterdam, which went very well until the gas prices went through the roof. This summer, I was all set to once again take him to school in Guilderland, until I got to thinking. I knew we'd have a period of 5 weeks of summer school. I decided that he could stand it for 5 weeks, so we put him on the bus this Monday morning. He seems to have taken it all in stride. I've not heard any complaints from him, the bus garage or the school. I'm still uncomfortable with it for a variety of reasons. (mostly because I now have very little motivation to get out of the house- that job better get going soon!) So here's an example of how something I pretty much dreaded has so far gone well. I'm going to make sure I "spotlight" how proud I am of him riding the bus when I see him tonight.
An interesting aspect about the RDI process is that I'm really learning just as much about myself as I am about how to interact and guide Sam. It's worth it for this alone, I think. I don't think this is anything anyone can tell you about the RDI process when you go into it. I've felt like one of the major components to it has been growth for all of us. I hope it continues to evolve in this way.

Summer beginnings.....

We have a bike rider! Thanks to my fellow blogger, http://thismom.blogs.com/this_mom/ (as if my blog even belongs in the same universe as hers- read for yourself!), Sam in now riding his bike! Without training wheels, without anyone holding on- just by himself. Stopping and turning we'll work on later! The New York City "Teach your Child to ride a Bike" program http://www.bikenewyork.org/education/classes/images/bny_learn_to_ride.pdf was really a great idea! A great thing about this is the now Sam knows how to start out by himself, one foot on the pedal, one foot on the ground, use your "ground foot" to get going, then find the second pedal. He'll be in great shape for bike camp in two week. He'll get to take advantage of a 1 1/2 hours a day for a week for practice.

Another new thing for the summer is I've got a new job! After a few months of soul searching thought, I decided my library job wasn't really what I wanted to do with my life. I enjoyed some aspects of it, but mostly I ended up doing things that I didn't even like doing, and for very little in the end, both pay and satisfaction wise. So I started dreaming of maybe getting a position doing some kind of genealogy research. I did some looking around the internet, and actually found a job being advertised by a company in Syracuse. The original job post was for more hours than I wanted to work, and it was for someone to work in Syracuse, plus by the time I saw the ad, it was a month old. So I sat on it for awhile, did a little research about the project, then decided to contact the person in charge of the project to see what the prospects were for volunteering. (figuring I'd get my foot in the door). Well, she was very interested in having me help out. Turns out they are in need of someone in the Albany area who is famliar with the repositories to look things up for them on an as-needed basis. We talked for about 1/2 hour on the phone. On my end, the project sounds just like what I'd be very interested in working on, not to mention the polar opposite of what I'm involved in now. Well organized, arranged in stages, specific areas being worked on, etc. The project coordinator is taking a couple of weeks to mull over where I might best fit in, and we are going to meet in Syracuse on June 30, while we are "vacationing" at camp.
I'm excited about this opportunity. One rarely hears of someone working in a genealogical or historical capacity for pay of any kind, but usually when someone is paid, it's as a private, free lance researcher. I'm not that interested in doing that kind of work. I'm more interested in being part of a team, working on a project that may actually get published and come to some kind of culmination someday. I'm looking forward to getting a closer look at their project and seeing how I can contribute. To get an idea of what some of the project is all about, check out this video:
http://link.brightcove.com/services/link/bcpid464120979/bclid1230998918/bctid1119221736

I'm really looking forward to this summer. I feel a sense of settlement, like all of us are doing what's right for us. Sam going to summer school with familier kids and teachers, Tom back to work pain free for the first time in ages, me with my new job! I'm excited about spending time with special friends and family and having fun! Last summer we ran ourselved ragged- this summer we have a little slower pace planned, but many opportunities to make memories! Hope summer looks bright from wherever you are too!

Family ties

Today we got to see some pictures and videos of Carol's graduation from the University of Texas. She's a doctor now! While it's a very proud moment for the Doughertys to have a doctor in the family, I feel a bit sad for having missed the event, and, indeed, not even grasping the importance of it in the hustle and bustle of every day life around here. Seeing the pictures of 4 of the Dougherty siblings together and knowing Tom was not there reminded me of how far apart we all are, both in distance and in life. I have six cousins with whom I grew up very closely, and I rarely see them anymore. We were as close as siblings, seeing each other frequently throughout our growing up years in the 60's, 70's and into the 80's. Now, I know people grow up, move away, marry and have their own families, but the reality of long-cherished ties growing looser with the passing years is one that distresses me on a regular basis. I so often feel that keeping in touch with those that have been and are dear to us could be something akin to a full-time job. You often have to know when to let friendships go- you can't hang on to everyone forever.
It's supposed to be different with family, though. Blood is thicker than water, that's what is claimed. I know I have myself to blame for a lot of the neglect of the past few years. Sometimes it's just EASIER to be with friends from everyday life who know our situation, are used to it, and don't bat an eyelash when Sam crashes the wagon down the hill for 50th time. I often feel lots of anxiety before attending a family event because I wonder what these people who are so dear to me are thinking about me and my parenting skills. How can they possibly know what it's like to pick yourself up, get back on the horse, and try a big gathering that is bound to make Sam hyper with all the excitement, noise and people? Things aren't like they were in the old days. Lots of times it's just easier to avoid things.
To everyone's credit, I can tell that people try to be tolerant. This is a lot better than the horror stories I hear about other families with kids on the spectrum. Some people simply don't get invited to family functions, or don't choose to go because they are not sure how their kids will handle it. It all leads to feelings of isolation- like how I felt when I didn't see Tom in those graduation pictures.
So really what it all boils down to is this- I need to develop a thicker skin. I have to have the attitude that these very dear people are my family! They may not verbalize it to us, but they do support us, and if they don't, then they aren't the same people we grew up with. They can't understand what our life is like because they don't live it, but they can show us kindness and respect, and understand that we are truly doing the best we can.
I just wish everyone in both of our families could know Sam as Tom and I do. Intelligent, caring, fun-loving, focused (yes, believe it!), oblivious to the crap in the world, optomistic, and loyal are just a few of the words I can use to describe this very unique child! My life has truly been enriched by our experiences over the past 7 years. I hope I have your support for the next 7 and beyond!