Transition Time

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!

I know Alistair hasn't even rolled into the school yet but the foundation that's being developed is key to his whole success for the next 13 years and to me it couldn't be going any better than it is. Now the next significant step is acquiring and meeting the education assistant who will work with Alistair one on one. Unfortunately, we won't know until after the strike is over and it may be a bit of a process after that. But like Mom says "There is no point in worrying about something that you can't control" But I can say its in good hands.  I say that as the principal does the hiring in that regard. So lets just keep the fingers crossed for a good match for Alistair and the school year to start sooner than later!

2700km, 12 days & 7 stops

 

Call me crazy but we did it and had more than a fabulous time. I was so desperate to get out of town and put some miles on the wheels and see something other than the four walls of our house. Alistair was just getting healthy again. I struggled with the whole idea. Should we hit the road and risk it or should I bunker down with my kids and really attempt to boost Alistair's immune system while all sitting indoors going slightly wiggy. Well as you may know I thrive on change so I picked the former. Even as I drove out of town I questioned whether this mama was making the right decision. But like my mom said we could turn around at any time and come back. So off we went. So who was we?

 

Well my delightful and inquisitive two year old, my fabulous son who pooped and ate like a trooper the morning we left and pretty much everyday we were gone(good odds for a long trip), my soon to be 79 year old mother who puts most 65 year olds to shame and of course moi the mama who hadn't backed up the travel trailer until the first night we camped but heck one has to learn sometime!

 

 It went way better than we could have ever imagined. Mom and I agreed we'd turn around to head home at anytime when the kidlets dictated it...ie more so Alistair than anyone else.

 

He's had a rough summer so we didn't want to push it. So no word of a lie Mom and I multiple times a day would look over at each other as Alistair giggled in the back or ate like a  horse and say "really?!?!...this is amazing...what a trooper".

It truly couldn't have gone better. He did have a couple tougher days with the whole bowel thing but all in all it was very enjoyable to say the least. We traveled about 300-400km a day to keep it easy on the kids, which was the perfect distance. Basically we drove 1.5-2 hrs in the morning. Then we'd stop for lunch and a nap where we found a playground for Francis or some neato spot to explore. Then we'd carry on for another 1.5-2 hrs to our destination.

 

It really gave me the feeling of a holiday. Prior to kids I'd drive forcing the bladder to hold out to its max capacity just to get to the destination in a record amount of time......this life no longer exists and its pretty darn nice I have to admit. Another great aspect is we got in ALOT of visits with ALOT of family. We stopped in Canmore to catch up with my Cousin Chris and his wife Sarah which gave us also some great opportunities to have our first snuggle with little Miss Helena. Then we carried on to Lethbridge where we had the privilege to witness Shawn and Tanya get married.

 

 Alistair did incredibly well for the ceremony and reception...again I was in shock. He loved listening to the guitar music that was filling the church and when we got to the reception little man was all smiles. He even danced with me to over eight songs as we stayed connected with an over sized slinky. I was in heaven!

 

 

 Francis also had lots of great opportunities to connect with all the relatives she had never met. She was in her glory.

 

Since weddings  are a great place to catch up with family we had three days of down time there which was lovely for all. Then we carried on North to Lacombe. I really wanted to take the time and see my friends Jackie and Donna who I went to nursing school with. Donna was recently  diagnosed with ALS and our visit was like we hadn't missed a beat since school.

 

I have to say Donna really gave me the chance to reflect on my own life and consider what I have rather than not have. Her way of making sense of her diagnosis of ALS is inspiring. She told me two weeks after her diagnosis a high school friend had died in a sudden accident where a vehicle he was working on  fell on him. She said it allowed her to appreciate the fact she has time to say goodbye along with do and say things she has been given the opportunity to do. Not everyone has the ability to look at life in such a way allowing one to appreciate the days left rather than resent them.

Then of course I had to catch up with my buddy Candace and her kidlets for a couple days. I just love visiting there. Alistair is always included and considered. Her kids are curious about Alistair and his needs and are far from shy to connect with him....which again warms my heart. I strongly believe its the parent who promotes and educates their kids in feeling comfortable in these interactions but there are just some scenarios you can not stage.....

 Francis again with her one eyed smile was in her glory. Kids, toys, and change = FUN FUN FUN

If only these two peas in a pod lived slightly closer to each other!

 

As usual its always refreshing and good for the brain having a stay with Candace and her family. 

Lastly we headed North to Edmonton and caught up with my brother who Francis just adores. She got to spend a slew of hours playing in the sand with him to her delight! 

Uncle George is also a very accepting and interactive person in Alistairs life.

My Aunt Helga and Uncle Holger were also a priority to visit in their new home. It was great to see Uncle Holger looking so well and in living in such a nice arrangement. Francis even had a chance to make him a picture for his fridge and give him a big bear hug. Aunt Helga sadly has advanced Alzheimer's. She looks fabulous but I won't lie it pulled on my heart strings to see how the disease has taken over. All that being said it was lovely to see her all the same and see that she was being taken care of in such a nice facility.

 

After seeing everyone we had one last lovely evening camping in McBride. I still can't get over that we have this travel trailer now. We've already camped a total of 15 days in it and we got it at the beginning of August! It provides such a wonderful opportunity to us all having the ability to pull our little home around behind us and go at the pace Alistair requires.

 

I'll tell you what it sure was good for this mamas brain as well to hit the road for a bit and have a change of pace. It not only provided a wonderful environment for Alistair where he could play, relax and be included in the changing environment.

 

But it also was wonderful to see how Francis enjoyed exploring her new surroundings and being with her brother outside of our home.

I have had several people ask how Alistair asked for his wish. Well he didn't. But I knew from our families interests along with past experiences where Alistair has exhibited positive signs of enjoyment from the whole scene that goes with camping that this gift would provide endless memories for our whole family.

Thank you once again Children's Wish for helping create many wonderful memories for years to come!