I have a son with autism and he is 4 years old.
He loves Tom & Jerry, Scooby Doo, climbing trees, all of his friends at preschool and me.
He is really good at kicking goals into his soccer net, helping me stir the cake mixture when we cook together and giving big squishy cuddles.
He struggles with noisy environments, transitions, trying new things for the first time and remembering to always stay near Mummy when we go out which is terrifying as a parent as I honestly feel like I cannot keep him safe.
Sometimes I, as a parent, find it hard when I think about what the future holds for Jackson. At the moment we are choosing a school for him to start at next year and it feels like there is no place he will fit with regards to the education system. Then of course I dare to think about what happens after school and wonder what sort of job he will have, if he will have a girlfriend, will he be invited to parties and most of all, will he be happy?
When every single thing that is new or out of a routine causes anxiety for your child, it really makes you wonder if they can be happy. I lay awake at night thinking about that most. I can take the meltdowns the fighting for every scrap of funding thrown our way, the numerous appointments, the stares of ignorant strangers if an outing goes pear shaped and I can even take the enormous financial burden on the family. It’s the happiness factor that keeps me awake.
But then I think about the special moments, like when Jackson participated happily in his Easter Parade last week, surrounded by friends and loudly exclaiming his love for me during the stroll down the preschool catwalk….. Well when I think about that moment I am filled with a love and a joy indescribable even for me, who as a writer, should be able to describe anything in words. This moment was too big for adequate words. I tried hard to put it into words though over at my own blog and I invite you to take a look at many joyful moments we’ve had together over there: http://myspecialstorybooks.blogspot.com/
Please find an extract of the Easter parade post right here:
So there we were, sitting front row and centre waiting for the Easter parade to start and I will admit to having my usual knots of nerves as I so hoped it would turn out well and not just for me and any need I have to see Jackson do the "right" thing, more for Jackson so he could enjoy the parade like the other kids and for once feel comfortable and happy even though it was a change in his routine.
Jackson's turn came finally, my video camera was poised and ready to go just in case it was a hit and not a miss..... Will he do it? Won't he do it? No one around me would have seen the inner encouragement I was trying to physically send out to will my little guy on and help his anxiety stay at bay so he could just walk down the path holding Annabelle's hand and walk back again. I'm talking about possibly a maximum of twenty steps. Just twenty little steps so many parents would have no understanding of the difficulty those steps would consist of for my Jackson. Twenty steps of sheer terror for many children with Autism and although twenty steps sounds like such a small task, our world is one of only EVER taking ONE step at a time. It's like the Autism Mum mantra I think.... We probably all have the same mantra in our heads for any occasion, any day, any task, any achievement.. anything. One proverbial and symbolic step at a time...
Yet here I was hoping for twenty actual steps. With the expectation of him overcoming the possible sensory issue of the bunny ears. With the expectation he was to hold Anabelle’s hand and guide her along for the twenty steps too and with the expectation he would be fine with all the clapping which is another sensory concern for him from the parents and teachers as they encouraged each child through their twenty steps.
Time to take the first step.......
Huge smile, Anabelle's hand delightedly in his own and off they went. I'm teary recollecting it now. "Hello Mummy!" he called as he competently passed me by on his twenty steps of pure unadulterated bliss for all to see and experience with him. Step ten or so was time to turn around and he paused. A look sideways to the grass beside the path of the parade...... He bent down and found the only yellow daisy in a big patch of green, plucked it from the ground turned around to take the return journey to the class and proceeded to rush over to me again with pretty, sweet, patient and kind little Annabelle still in tow (sporting the most open and giving smile of her own too). Jackson handed his freshly picked yellow daisy to me and I'm being generous by not calling it by it's rightful name of a weed.... but it was simply the most exquisite weed I have ever seen. He looked at me squarely in the eyes, shared a moment just for us in a crowd of many others and said in his ridiculously loud voice, "I LOVE YOU SOOO MUCH MUMMY." I responded through my predictable and joyful tears that sprang up from my always aching heart..... "I love you too Jackson, thank you baby boy."
I am brought to you today by overwhelming joy, happiness, pride and love. Oh did I mention love? My heart is busting with overflowing LOVE! A happier Easter I could not wish for after today's Hat Parade ...