True Reality

I had a tough day with our true reality. I saw this fella. Large, awkward, ....disabled....running his own wheelchair down the street. He looked socially awkward. My first thought was....Ooooo if Alistair could be just like him I'd be thrilled. It was an innocent and quick thought. It hurt. No I don't get use to Alistair's reality. No I'm not one to say " I wouldn't change him for the world". I'd change him in a heart beat if I could. I truly wonder if people really mean that when that comes out of their mouth or if its a way for them to sound like they have socially accepted their child for where they are at to an ultimate extreme. I love my little man...that's why I'd change him. I just want him to be happy. Have a good quality of life. Feel stimulated in his environment and not lay there feeling vacant because he can't access the stimulation or interaction he needs due to the fact his body fails him. The more time I spend with little Mr. Man the more I feel that he has a lot more going on between his two ears then people give him credit for. He doesn't do the social norms. He doesn't give you eye contact, he pulls his hands away....but he gets it. I'm not saying he's Albert Einstein but he's not a coffee table. He provides a much more positive sense of being when he's had a lot of positive things go on in his day. I'm fortunate to have a lot of good buddies.

One group of buddies are kidless and not married. We get together once every couple of weeks for a dinner at one of our random houses. The rest of us bring goods to eat and we basically have a good feast and solve all the worlds problems including our own. Its lovely. Well this past weekend we had a social during the early afternoon as the kidlets had to come with me as Jason has been incredibly busy. The kids loved it. The best part is it was a picnic in my buddies barn. I could tell by how his body reacted and his facial expressions that he was having a good time. The sweet smell of fresh hay, the wagging tail of the dog, and the fact that there were all sorts of people around giving him attention made for a good day for him and well a great day for me.....and well Francis...she seems to have an absolute blast where ever she goes. Warms my heart! Anyhow I'm just rambling but ya that whole reality of what my dreams are for Alistair really hit hard yesterday. So no I don't get over the fact he is a special needs kid. I guess I get somewhat use to it. However, it hurts. I plow through with a smile on my face but some days I think wow this is truly a life time commitment! No tears of your child leaving and going out to explore the world. No worries of whether your kid will pick the right or perfect partner in life. No concerns if they will pick a career path that will full fill their life. Its a whole other set of worries and fears and to be honest I learn a whole new set of them each and every day. Its heavy. I use to think that I'd finally get to know what the whole package deal was for Alistair and then I could move on and cope with that known reality. But noppers it just keeps changing and morphing and this brings a whole new list of concepts, ideas, and realities to research, explore, and consider. Its heavy. So one of the things I recently did was start up a facebook group called SPECIAL NEEDS FAMILIES OF NORTHERN BC. I've found that my biggest resource is other families that have been there done that. You'd think there would be some professional organization that would help you become aware of all the resources, benefits, grants, etc.....but nope. We're on our own. I've found that I've actually had to convince specialist/profesionnals that various resources are available. Is that not crazy or is that me? And no these are not resources that have just popped up but have been around for several years. I think man I'm just lucky I'm social and like to talk. Can you imagine the poor parent that dreads talking to others or just has no interest in socializing.....can't wait to get home and close that door? They are stuck! Anyhow, that brought on my idea of starting up a group that was focused on the North. There are all sorts of groups based out of the larger city centers but you get swallowed and so much doesn't relate to us. So not even a week old it seems to be proving a great thing. There is such a wide variety of parents from all over the North, with children with a massive range of concerns and ages. The bonding and support seemed to start immediately. And as for my part, I just started the ball rolling. It took no effort at all and basically now all I do is make sure we keep out the sales peps, curious onlookers, and those working with special needs as its for the familes. Anyhow, enough rambling on my end....must put this head to bed. Cheers and thanks for listening.....Juels