Well I knew it was coming. I was warned by parents and specialists alike. But it still is like hitting a brick wall. Alistair has been under the CDC umbrella for the past five years. Its been nothing but positive for all of us. I can not imagine what life would've been like with out that facility in my/our lives for the past five years. Everyone working with Alistair and even passing him in the hallway were comfortable with communicating, educating and progressing special needs children such as himself. We felt normal. It took so much pressure off me to know I could plant a seed of concern and support and ideas would blossom.
I didn't stand alone in figuring out what Alistair's life and supports would look like. "Team Alistair" was created there and what a team it was. I was pretty darn nervous with how this whole school system transition would take place. All new relationships needed to be born. Thank god I'm a people person but its still a hell of a lot of work. Plus to find that balance of advocating for your child so his needs are met and addressed but not stepping on toes or irritating others so that they resent seeing the whites of your eyes.
I've had people say "who cares if you piss them off", "your kids first and you have to ruffle feathers", " you have to push hard to get what you want for your son or he will be lost in the cracks" and the list goes on with advice. However, that's just not my way. I have a different philosophy and perhaps it comes somewhat from being a nurse. As a nurse those loud demanding family members make you cringe.
The diplomatic family members that make their point but show respect for your position and situation cause you to be drawn to them. You want to help. You make extra unnecessary visits to the bed side and so on and so forth. So I use the same philosophy as Alistair's mom. If the team like me it will benefit my son. If they see the effort and energy I put into my child to cause him to progress and move forward they will feel the need to enhance and support that direction. If they see they are respected by Alistair's family and supported with ideas and flexibility they will work harder to support him. The other thing is as well, I just can't exist with an edge to fight all the time. Its not my nature. I'd spontaneously combust. No doubt in my mind. The wonderful thing is I have a good gut feeling of what Alistair's future in school will be like.
We had an initial meeting with twelve people total in attendance. I wrote my typical 8 page overview of Alistair which includes everything: medical history and updates, equipment available to share at the school,physical abilities and areas presently worked on, communication abilities and methods of enhancing this area, overview of feeding schedule and feeding techniques, medication, gym and physio recommendations, priorities, goals, seizure protocol, safety concerns for other kids and himself, and wish list. Its a hefty document but its worked well in the past as everyone has a hard copy of my perspective and an overview of Alistair. We were cut short that day as the strike had just started so our time was limited but it gave me enough time to get a feeling, a good feeling. Since then the principal, kindergarten teacher, and resource teacher all made visits to Alistair in his daycare setting. The principal has also been keeping me in the loop via text, Email and phonecalls with updates, plans, and ideas. Plus she's not dictating to me whats happening but more so including me in the idea and planning process. So how can I complain!