Recap: Last posting was one of nerves and anxiety on my part about my firstborn baby boy heading off to big boy camp with his occupational therapy clinic and my hopes for his success to prevail and my terror to subside.
Great news! We all survived camp. J had a great time and happily set off towards his camp leaders each morning when I dropped him off. The leaders talked me through all my nerves each day (very patiently which I thank them for) and life has gone back to our usual school term routine again of familiar, safe preschool, familiar, safe occupational therapy in the familiar, safe clinic each week and no more camp preparation, worrying and organisation to do. "Camp Finished" as it affectionately became known as around here after Jackson crossly expressed his feelings that "Camp is Finished" one morning when he was at first hesitant to attend but then went on to cooperate happily with morning routine to get ready and go... Well "Camp Finished" is in fact finished. Now forgotten and no need to think about the anxiety this big milestone caused.
Except there is big reason to revisit the events of Camp Finished. Big indeed.
Whilst J did happily attend and did participate in some amazing activities and had a wonderful time, he managed to do this only because of constant vigilant one on one supervision and encouragement.
One step at a time...... One small, tiny baby step at a time. I know I know. The thing is though, this one on one support he so desperately requires to participate in all of these fantastic and fun (for many kids but sometimes not so for ASD kids) will no longer be available soon in the NEXT big milestone we face as a family and what are we supposed to do when he doesn't have the one on one support for him anymore?
My concerns about J absconding and constantly running away at camp were in the end founded and the original ratio of adults to children in his group had to be increased to be able to keep him safe and provide the support he required to stay with his group.
The fact that he happily trotted over to his leaders each morning in a completely new setting, so very different from his usual and comforting routine was a huge achievement for J so we are focusing on these positives along with his excitement about seeing new friends each day which was enough to light up my soul with bright hope for his future potential to form meaningful friendships (the number one and heartbreaking worry for an ASD mum usually).
But! And there is always a but isn't there?
But, to join his group and participate in even a simple task for most kids like eat his morning tea? Well that caused major emotional meltdown for my beautiful and highly sensitive little man. He needed a large amount of encouragement to join in for the widely perceived as "fun" group activities like music, craft, obstacle courses and many others that if offered for him to do at home or in his much loved and familiar setting of preschool he has now come to enjoy and look forward to with easy transition and participation (most of the time).
Each day his lunchbox came home still untouched as his anxiety was too great to eat to enjoy the social chit chat usually required or cope with the sensory overload that eating a meal with friends causes for him. Most days the craft project many of the other children proudly presented to their parents was not completed by J, such was his aversion to trying something he was not familiar with or had no understanding of the expectations of his role in how to complete the task.
Each day when I went to collect him my run down of the day from his support carer was quite literally that. How many times he ran away, needing to be gently and in a very supportive manner, led back to his group over the day during anxiety provoked emotional meltdown.
Please understand I really don't care about the one less craft project to pin on the wall or the food not eaten in the lunchbox. I only care about the emotional difficulty and anxiety it caused for my boy. It hurts me to think of him so frightened about what most of us do and enjoy with little movement on what I liken to an emotional Richter scale. This Richter scale for J goes up and down with incredible intensity every minute over every task which must be absolutely exhausting for anyone, let alone a child.
This clear need my child has to require such intensive one on one support for his "behaviour" has led me to consider the schooling options (yet again) for next year. It's a fact he will not receive this support in any formal school setting we have to choose from. His high IQ means he is not eligible for a support class and mainstream school does not provide one on one support due to funding. My God how I hate that bloody word. FUNDING! It's hard to care about the difficult position the schools and teachers are in because of funding when when the position your CHILD is in is the only thing on your mind.
So whilst I understand that baby steps are still steps and whilst I stand up and cheer, clap and whoop at every single one of those baby steps we take every day with this amazingly brave and oh so bright little boy I also have the niggling worry that we are running out of time for baby steps with the next big milestone looming ahead getting closer and closer in our very near future and not at all in proportion to the baby steps we are enjoying.
Every single decision is fraught with worry when your life is one of a differently abled child. Every single one. I wonder if one day these decisions get easier? I hope so. I feel some days I bear the weight of the world on my shoulders in an effort to take that weight off my children's sweetly innocent, little shoulders who should not yet have to carry such a load. We have worked out a balance of helping them gain the independence they will need to make it out there in that heavy heavy world and also bearing the brunt of some of the weight for them when need be I think. It's hard to tell if the balance is totally right especially on the days I could collapse under the weight. I never do though. I'm holding strong and will continue to do so but sometimes it's very difficult to bear the weight without the anger, worry or sadness that sometimes goes along with carrying such a load day in day out.
Thankfully, the baby steps come along and make the load just that little bit lighter at exactly the time I am thinking it's way to heavy to continue to carry, every single time.
I guess the baby steps are what keeps me going and what will help lead my boys down the right path for every milestone we walk towards (and then have confidently climbed over so far) including the big scary one called school not too far off in the distance. If you see me struggling with the weight of the world in the lead up to each milestone please don't hesitate to send me the encouragement of those who have gone before me or who just understand and share the load with me in their own lives.......
Combine the encouragement my true and wonderful friends help support me with and those delightful little baby steps and I think we might even see a few leaps and bounds too just like the one I am choosing to focus on for now from confronting, lovely, scary, fun, anxiety provoking, milestone climbing "Camp Finished."
My J described his fellow campers as his friends. That's quite a leap! I'll join him in that leap and throw in a cheer for his bravery and all the leaps and little baby steps he has made along the way and continues to make.
OK.... We are now about to attempt a leap and a bound in one. We are taking both baby steppers along to the local show complete with flashing lights, side show games, rides like the Ferris wheel, animals and much much more. Are we mad? Possibly. We are also optimistic that we might just baby step through the gate, leap through the show and bound back home with big smiles on all of our faces to cheer about.
I'm sure we'll have a tale or two to tell about the leap of faith we are taking today. Let's face it, My leaping and bounding about boys provide me with stories and tales about the most banal activities every day so I can only imagine what this undertaking will provide me with.
Bye for now. Back soon with tales of (hopefully) show triumph. ;-)