As August draws to a close and mums everywhere heavy heartedly prepare their little ones for back to school, I wonder if special needs mums feel a different perhaps more profound kind of fear. Sure, it’s hard for everyone to send their first born off for their first day of school. They’ve clung to their mums from the day they were born and now it’s time to hand them over for 5 or 6 hours a day to people who are more or less strangers. People with good hearts for the most part but also people who don’t know your little one’s ways. They don’t know what comforts them when they are hurt, how to soothe them when they fall or can’t have time to sing their favourite song when they feel sad. You wonder ‘Will they make friends?’ ‘Will they like their teacher?’ ‘Will they find the work too hard?’, ‘What happens if they fall?’, ‘What if they miss me and think I’ve left them all alone?’
It’s no wonder then that the mums line up at the school gates with the tissues at the ready waiting to see the final glimpses of their little ones as they disappear out of sight ready to take their first independent steps into a world that doesn’t revolve around mummy.
But imagine sending your first born son off knowing that over the next 7 years in school they are going to become weaker and that before they leave primary school they will no longer be able to walk. Imagine sending them to school when they have a terminal condition, when every minute of every hour of every day of their lives are so precious that you want each one to be filled with joy. This is what I and thousands of other mums all over the world will do over the coming days. I can’t list all the worries I have tonight but some of them are these:
- Time – A precious commodity when your child is life limited. Now that the time has come so quickly for Luke to start school, it makes me realise just how fast time is moving on. Before Luke finishes Primary 1, he will already have lost about 30% of muscles. So as I wave good bye to my smiling little boy on Friday morning and watch him disappear into that class room, I’m also waving good bye to yet another day with no treatment to save my son.
- Will they ‘get it’? – Tomorrow I will send my first born off to spend the day with people he doesn’t know. They are good people, people I trust, people who I believe have a genuine love of children and who will do all it takes to make sure that Luke and all the other pupils in the school have a fun and fulfilling learning experience throughout their seven years at the school. But I also worry, because like most people Luke meets, they don’t know about his condition. Will they understand when something is too much? Will they understand when misbehaviour is out of sheer frustration because he is unable to do the things his peers are doing? Will they be able to comfort him when his worries about being different overwhelm him? Will they be able to watch him all the time with a school full of other kids too, to make sure he doesn’t get knocked over?
- Making Friends – With already poor social skills I worry about how Luke will make friends in school. How does a kid make school friends when they can’t play football, or ride a bike, or climb the fences? How will he be picked for a team when he can barely run, let alone win a race or jump over a ball or swing a hurly bat? Will the other children want to be friends with the boy who uses a buggy? Will there be at least one kid who will see all the things Luke can do and want to be his friend? Will he find a friend to help him up off the floor at story time and who will sit with him at lunch time? Who will wheel him around the playground in his chair at break time when he loses the use of his legs? I don’t want my happy care free little boy to be lonely.
- When will he notice he is different? Right now Luke is completely oblivious to his condition and he is a happy smiley wee man because of that. He is just a typical 4 year old boy. But, after starting school, it will only be a matter of time until he notices that he is not like all the other boys. When he asks questions, will I be able to assure him that he is perfect just the way he is? Will I be able to tell him about his condition in a way that doesn’t scare or worry him? I hope and pray that his self-esteem and confidence isn’t knocked by feelings of inadequacy. My little man is perfect and he will grow into a loving, capable and talented young man. But will I be able to help him acknowledge all the things he can do that are so much more powerful than all the things he can’t?
- What if he is bullied because of his illness and treatment? – It’s a kid thing, or maybe just a human nature thing, to poke fun at things and people who are different. What happens when the other kids notice Luke’s differences? He won’t be able to run as fast, he’ll lag behind his class mates in the queues; he’ll use a buggy on school trips and need help to go to the toilet. Eventually he won’t walk at all and probably won’t be able to write very well as the muscles in his arms weaken his hand grip. Long term steroid use will make him shorter that the other kids his age, and he’ll get knocked over like a feather. Steroids will give him brittle bones so he won’t be able to join in games where his bones could get hit. What if other kids find out his prognosis? Will they tease him because they will grow up and he will not? Will they tell him that this cruel disease will take his life way too early and if so how will he cope with that?
- Will school life be his whole life? Let’s take a little look back to the boys in our family who lost their lives to Duchenne. My brother, Luke’s uncle Mark, had not yet finished school and my three uncles were barely out of school when they died. Unless we find a miracle, then Luke will face the same fate. And if school life will be his whole life, will it be fulfilled enough? Will it give him enough opportunities to laugh, to love, to learn, to grow and to know himself? Will it make him feel like he had an accomplished life?
There are lots more reasons why the thought of Luke going to school scares the life right out of me but in that respect I guess I’m no different from every mummy sending their first born off to big school. But I know I have to let him on his way to grow, to learn, to live, to love and hope that it is everything it needs to be to give him a fulfilled life.
So to my baby boy I say ‘off you go wee Lukie, be a good boy, do as your told, have fun and mummy will be waiting for you at home time.. but come here…give me a kiss before you go. I love you’
And to all the mums sending their kids off to school over the coming days, good luck and I’ll be thinking of you all especially all my fellow special needs mums J