Tuesday, December 30, 2008

Another Year Older

Happy Birthday my sweet baby boy - and yes, even though you are turning 5 you are still my baby. Forever. Sorry, it's a mothers prerogative to forever and always consider you her baby - although I will try to refrain from calling you that in public - that's the best I can do.

I cannot believe how fast time is passing. Daddy was playing old home movies the other day and there you were in all your glory, sitting in your diaper on your brothers bed with his guitar on your lap singing "You give love a bad name". A stellar rendition. It seems like just yesterday you were racing around, falling every couple of feet, yelling "I'm O.k." and needing a boost to get up on the bed. Now you can reach the light switches, climb onto the counters to help yourself to a snack, and just this morning you used a knife to cut your own breakfast feast of pancakes. The questions you ask me often throw me for a loop but thank god for google so you still think your mom knows everything.

I know we butt heads often, I guess we share the same strong will even if you didn't grow in my womb. You were meant to be my son for sure, if just to keep me on my toes. You keep wanting to grow up so fast and I work hard to keep you small. But I am proud of you - you are so thoughtful and sensitive and forgiving. I think this even when I can be overheard muttering that you are too smart for your own good.

My wishes for you as you get older and explore this vast world of ours are both endless and simple: believe in yourself, be good to others and never, ever doubt for a minute that you are loved entirely and completely by your family. We love you JJ.

Tuesday, December 23, 2008

Delivering Spring & Summer

In the past nine months, since I started my new job, I have met some dynamic and inspiring individuals. Some are living with a disability, some are parents or family members of an individual and some are working in the field, passionate about inclusion of everyone in the community. Typically conversations with new people are difficult for me, I never know what to say, I suck at small talk. With these people though, I am loving the conversations. It's almost like a drug, I get so charged by what they share. I find myself thinking new things, posing new questions to myself, challenging my former ways of thinking or doing. I LOVE it.

One of these individuals will likely never know the impact just a few of words have had on me. It was during a break at a training event and I was saying that the instructor was really opening my eyes to what we would need to do to prepare our son for adulthood. It was daunting but exhilarating at the same time. This woman, let's call her Jane, is a facilitator working with adults and their families to achieve the life they want to live, in part through individualized funding.

We were talking about giving all of our children, no matter what their challenges, the same life experiences. Many times when our children are young, respite dollars and Special Services at Home (SSAH) dollars are dedicated to providing a break for parents and fun for the child or even extra school type tutoring. What doesn't happen often enough is using these dollars for paid staff to support an individual in being a productive member of his family as he/she gets older, such as cutting the lawn or getting a part time job. Jane followed it up later by sharing with me how many individuals, because they have been given some sort of a diagnosis, have never had a job as a teen - paid or volunteer. She stressed how important it is for all of us to have those experiences. "How do you know what you absolutely hate to do if you never had to endure one of those horrible teen jobs?" as she put it. It's true - I had lots of those jobs as a teen - paper delivery, bus girl at a family run diner, later a waitress at a restaurant run by a deviant.

No matter how hard those jobs were, I learnt something from all of them. Not just how to carry multiple plates and make change but how to deal with difficult people, how assert myself and what I do not enjoy doing in life.

This is what prompted me to start making a plan for C to get a job. We thought about being a dog walker because he loves dogs but A is adamantly opposed to getting one. We have a large apartment building filled with retirees across the street but in the end I decided it would be best to wait until he was a little older for this job. Not to mention I was not too eager to have to poop and scoop for other people's dogs, cause we know I would end up doing it most of the time.

I called a weekly supplement paper here in town and was appalled at the wages they pay - 4 cents a paper. No way I could justify the time it would take to put the thing together and then delver. If I wanted him to volunteer we would pick something more worthy than an advertising conglomerate. Finally we settled on Sears catalogues. We know some other families whose kids have this job and they have had no issues. There is no prep to do the job, you can have a route as big or as small as you want and it is not every week. The intent was to have C do the route a couple of times with me and then I would begin having his support workers go with him.

The ideas behind this are three-fold, learn about responsibility, earn some money and connect with the community. Already after three separate deliveries I see people chatting it up with my boy and I marvel at how easy he finds it to make small talk. Older people seem to delight in his little phrases such as "gee, it's a glorious day isn't it?" (it was dark, windy and frigidly cold). This is one of the ways our son will be known and connect with his community which is so important to vulnerable people.

What I didn't stop to think about when I called and signed him up in October was snow. Where we live we don't tend to get a lot of snow, particularly not until after Christmas. We got dumped on last week, the same day that I pulled into my driveway after driving 4 hours round trip to pick up my mother. There in the driveway before me sat stacks of catalogues being quickly covered in snow. I also didn't stop to ask more questions about the catalogues being delivered just before Christmas. Did you know that the Spring & Summer catalogue needed to be delivered by today? Did you know it is about 1.5 inches thick and weighs a ton (okay I exaggerate but the bundles did bend the wheel in our wagon from the sheer weight)? I also didn't stop to realize that our 60 houses would more than double because people had ordered for Christmas which means they automatically get the next catalogue.

I was determined not to give up, we would get this done. But I ended up being THAT mom, the one that drives around in her van while her son leaps out delivering to each house. I, at times, thought it was going to kill me. But you know, last night while C and I drove around in the frigid cold with the heat on high and a flashlight in hand to try to make out house numbers, I realized I was having fun. Life had thrown us a curveball and we were figuring it out together. C's whining actually ceased last night when we got to the last bundle and the end was clearly in sight. We were working on pure adrenaline as we raced to see who could deliver to the house and get back to the van first. He fell into bed last night and was asleep within minutes, a rarity for him. This morning we are still hi-fiving each other over our accomplishment.

Wednesday, December 10, 2008

My Sweet, Sweet Boy

One of the hardest parts about having a child with complex needs is balancing that child's needs with those of siblings. C has been having a rough couple of weeks and so J has been slightly neglected the past few weeks. He was becoming moody and clingy and I KNEW I needed to make an effort to spend some one on one time with him. So today I sent C with his Respite worker and bundled J up to go off and see Santa.

It was the fastest trip ever. When we got to the mall there was a child just finishing and . . . J was next. He climbed right up on Santa's lap and told him he wants "Lego Batman" (a game for the Nintendo Ds he has been promised for his 5th Birthday) and a "Slingy" which of course is a "Slinky". Santa did a visible double take at that request and gave a little chuckle. They had quite a chat which I couldn't hear the details of -"It's personal mom" I was told when I enquired later. Of course I bought the picture package - he looked adorable and we had done the same for C. We are determined not to short change him on memories like these just because he's the youngest.

Then off we went to A&W for a "Cheese Hamburger" at the food court. I must say it did feel great giving him my undivided attention and basking in his 4 year old delight at every little happening. While standing in line waiting for his burger to be ready a man approached the cashier. His jacket was large and long on what was obviously a slight frame. He wore a sweater under it with the hood pulled over his head, effectively masking his face from us at the side.

When he approached, others waiting for their food moved away, an uncomfortable silence fell over the small crowd. He began to order, struggling to get his words out. His deep baratone voice moving up and down octaves loudly as he strained to get the words out. His body was in constant motion - not extreme but definately noticeable as he placed his order with the help of the lovely cashier who never let her smile waver and who pointed to the pictures on the board to make sure she had understood his request. As the young man paid for his meal I found myself filled with both happiness and sadness. Here before me stood someone who reminded me so much of my son. He was at the mall, shopping and ordering a meal on his own. Obviously very independent - nothing to indicate that he was anything other than self sufficient and happy.

But there was also the reaction of the other people, the assumption that he was someone to steer clear of. I was saddened by the reaction of others. I did feel a little sad that it was obviously so hard for him to verbally communicate. I worry about this for my own son. I can't help but think how frustrating that must be to want to get words out and not be able to. Then a little voice piped up and I felt a tugging at my coat. There was J hiding behind me, obvious fear in his large eyes as he whispered "mommy, where is that man from?".

Oh how my heart broke. I know he is 4 years old and had every reason to be uncertain about this man. But why was it so scary, why was it so foregin to my boy who lovingly interacts with his older brother all day everyday who sometimes cannot get a word out without stuttering and repeating himself loudly? He was scared of this man but I was able to explain that the man just had trouble getting his words out like C and wasn't it nice for the lady to wait patiently and to help sometimes. We talked at our table about how one day C will be a big man like that and maybe he will still have trouble getting his own words out.

And my sweet, sweet boy leaned over and put his hand on mine and said "and I will be like that lady, I will wait with a smile and I will help when I can".