Tuesday, July 07, 2009

Moving Forward

Today is the first day of my new life. I am declaring it so, so it must be true.

As of today, I am no longer a slave to the taxi driver syndrome. I am no longer a slave to the home based therapy schedule. I am no longer a daytime single parent. I now have the support of a kick- ass hubby who does more than his share of the work around the house and with the kids. Jonathan is home for the summer and we've actually got a schedule (put in italics because schedules never work out quite the way we planned), where I get a part of the day to start my new writing venture to see if I can someday bring in a bit of income. I'm catching up on my blogging and my blog-reading. The summer is going to fly by in a blur, but come September, all three of my boys will be in school full days, so I will have some time to take my writing more seriously.

So that's where I'm at, but where have I been?

Life around here has been nutty. Always is. But the past few months have been particularly tough. Before I rant and gripe, I must take a moment to reflect on a conversation I had last night with our neighbour, Al. Last night we had a barbecue at our place, in honour of Marci (one of our fave therapists who moved to San Diego a while back). Al lives across the street and he came over to join us. He shared that his girlfriend's 29 year old son is currently fighting for his life with pneumonia- a nasty trick the gods like to throw at people when they are already fighting the fight of their lives against such diseases as cancer, in this young man's case- a form of Hodgkin's Lymphoma. 29 years old with two and three year old children. I have never met this man or his young family, but I cried for his mother, Gwen and the thought of how helpless she must feel, watching her son struggle. Al and his three kids suffered their own loss five years ago, when his wife lost her own battle with cancer. We didn't know Al then, but we know him now to be an optimistic and realistic guy who always a smile on his face and an extraordinary zest for life. Al said to me, "I'm of the opinion there are only two types of people in this world. There are the ones who do nothing but bitch and complain and look to the outside of their own life; wanting kids like those ones, a house like that, more money, a better wife, greener grass.. and they blame everyone else for their not having it. Then there are the people who look at the cards they have been dealt, and understand that life is full of goo. It might not be pretty, but it's gooey and our job is to enjoy the goo and learn how to navigate through it. When you live in the moment, you can find the beauty in the goo and you won't care about what the others have or don't have. My whole perspective on life changed when we went through the experience of losing my wife."

It is pretty difficult to complain about my own life when I think about that conversation. Not in the assumed sense that my problems are nothing compared to the loss of a loved one, but in considering the lessons that Al learned, I need to just get on with it and be grateful for what I've got. I think the lessons I need to take from my experience in parenting my three challenging boys, is not to focus so much on the struggles or even the goals we set for them. But it's how we deal with it all that counts. It's about our attitude and our outlook.

That being said, I just want to summarize what has been going on the past few months while trying to keep the complaining to a minimum.

Owen: Owen is in a really good place right now. Since March he has been with a new agency for his behavioural intervention therapy program. It was a rough start, but very soon we could see the benefits of the change. After years of ABA home therapy, Owen was bored. I personally think he was no longer being challenged and was slipping through the cracks. Because he can be so complacent, quiet and easy going, he can be easily overlooked and forgotten. Living in Will's boisterous shadow is not easy and in the final months with his old agency, my focus was definitely more on Will and it was difficult to garner the focus and energy required to make Owen's program just as meaningful.

Until we found his new program.

It's all about Owen now. Parental involvement is welcomed but not demanded, so programs can move forward with or without me. They understand that we have twins with equally demanding needs, but their one and only focus is Owen so decisions are always made in his best interest. They have freedoms in operating his program that allow him to work outside of our home and everyday is something new for him. He regularly travels to their center, to the parks, to the hair dresser, etc. where he gets to generalize his skills and meet with other kids. During the summer he will average two outings a week- to the zoo, to the Calgary Stampede, a ranch, sailing on the reservoir, mini golf, bowling, swimming at the lake and the list goes on. He is a happy boy who recognizes that he is important and is eager to work for the great rewards. Let it be said that the rewards are not necessarily all the big trips, but in his own personal pride at accomplishing his new goals. It really is exciting to watch him right now. Whether it's discovering that he's got a wicked accuracy in kicking a soccer ball, or watching him discover his independence in bowling (with none of my help!).. Owen is definitely a kid who wants to learn and experience more.

Owen with his Gamma

Owen is registered to attend a private school for autism in the fall. We are really excited for him and anxious to see how he does with the transition to an all day school program. It is an ABA based program and he will work in a classroom with a 1:1 aide. A couple of weeks ago we went to a picnic and met all of his new teachers and classmates and are now really excited for him to start this new chapter in his life.

Jake: My baby has been in Toronto with his Grandma for the past two weeks. We have been separated before, but he has always been with at least one of us (Jonathan or I) in the same city. It has been a tough separation and for the first few days I seriously carried a sick feeling in my stomach and all thoughts were in Toronto with him. But I also must say that the quiet in our household has been nice. Jake finished off his school year with an amazing report card and a great attitude. What a difference a year makes being in a school where his teacher understands and respects him and his interests and skills in art are encouraged and celebrated. Jake has come through a rough few years with an earned maturity that you don't often see with eight year olds. He's still got a sassy mouth and he challenges authority and often finds that his sarcasm gets him into trouble (hmmm... does this sound like Stacey and Stephanie I wonder?), but he is truly a compassionate, considerate and funny kid who I can't wait to know as an adult. He will make a great friend or partner to someone and the world better be ready for him, because he can accomplish anything!

May and June were very hectic for our Jeek. He was signed up for a soccer league and I think he's finally found his niche in the sport. He's not a goal-scorer but his dad says that he's a great tackler. I can only say that he looks great on his feet. He has definitely inherited his dad's athletic talents and natural ability. His Irish Dancing has come such a long way. He has a true talent and wowed us all at his Dance Recital that finished off his first competitive year. I really look forward to seeing where this takes him and if he chooses to continue. He clearly has a passion for it.
Jake on his 8th birthday

Will: Oh, Willy. Will's current trials and tribulations deserve a blog all of their own. It is so difficult to sum up what is going on with him. I think it's easiest to say that I think Will is just pissed off. It is as if he has just hit his limit. I have put a lot of thought into what is behind his current state of mind and it's not unreasonable to assume that he is probably just sick and tired of being told what to do (as any child would be). But these kids have been in intensive therapy for over four years. Four years of working hundreds of times harder than the average career-adult at a level of intensity that not many of us have to endure. Working to understand what is asked of him, working to have his needs and thoughts expressed and working to constantly try and regulate his difficult outbursts and impulses. Something changed with Will this year and I am not just remarking upon his new skills and accomplishments. But I feel that I now have a child who understands his place in the world and I know that he wants to be heard and demands that we pay him the respect of explaining things to him. You cannot take for granted that just because he can't talk, he doesn't understand. Gone are the days of babyhood when you could tell his embarrassing poop stories with him in the room and know that he didn't have a clue about what you were saying. I think one of Will's problems is that not everyone is of this understanding of Will. Decisions are made without his consultation, choices are made for him and hands take his to steamroll him from place to place without explanation. Of course this is a natural treatment of children from time to time and adults make decisions for their kids all the time without their approval. But Will is beginning to understand that he has a mind of his own and he wants people to respect it.

Will (in his spider hat) with his aide, Tara on their last day of preschool together

Here is a run of the mill example. Will came to hate going to school at the end of the year, as most kids do with the warming temperatures, the allure of his precious dandelions in every patch of grass on the drive to school and the memory of his weekend of freedom and waterslides from the days before. Tantrums would ensue in the hallway to the classroom, with kicking, screaming and all efforts to head back out to the car. A year ago, I would have gone through our ABA bag of tricks and used such things as If...Then, Reward Systems, or simply ignoring the tantrum, making my demand (of him getting up off the floor and going through the door) and handling him through the process of moving forward. Now, I'm not willing to do that. I still see the benefits of some of these strategies but I believe that Will deserves to have a conversation around it, just as Jake would. We both know that in the end, Will is going to school. But I know that if I kneel down to his level and help him to express his feelings (you are feeling mad, or sad), showing him a schedule that shows that after school he will be able to do all the things he is looking forward to, or simply talking through it (it's time to go to school. It's going to be a fun day, you're going to do some crafts, you'll get to play outside, etc.), he might still tantrum, but I believe that he deserves this kind of conversation and he deserves to be respected as a little person who has a voice. Unfortunately, I'm not sure that the rest of the world has this new appreciation for Will's role in the situation and I think it has contributed to his frustration. While it may not be the sole reason for his current heightened level of stress, I know that it is now shaping my new way of approaching my son.

Will's next school year will also bring him to the same private school that Owen will be attending. I see his placement here more as a stepping stone or 'transitionary year' as we try to build and develop all the skills that he gained in his preschool years, so that he will be prepared for more of an inclusive setting in his next school year. I will probably discuss this further in another post. We decided to give Will the summer off from therapy to let him have a break. We have our own family goals and initiatives that focus a lot on community and play and to really tackle some of Will's underlying medical and psychological challenges that we believe also contribute to some of his distress. There are big things in Will's future and this summer will be our time to lead him in that direction.

As for Jonathan and I, we will continue to keep on keeping on. I am excited about our future, while always worried at the same time. But as life continues to throw us curveballs, it also throws us little miracles along the way that remind me that someone has always been on our side to help us make the best decisions for our kids and I believe that this good fortune will continue. Always keeping the faith..


Lady Di said...

Hi there! Good to see the boys are making some progress. It's hard to see them struggle. My son is seeing a therapist once a week for cognitive behavioral therapy. He has also been taking swimming lessons everyday (kind of a therapeutic thing to give him something to focus on that has repetitive motions etc.) He seems a lot calmer now that he is out of school. School puts a lot of stress on him (obviously). But your right, we just got to keep on moving forward and deal with the goo we got :)

Mrs4444 said...

You really have your hands full (of goo) don't you?! Something tells me you're the best mom your boys could have :)

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