When your son shouts “Shopping!” at 6:50am, you forget about a lie in, pull on yesterday’s joggers, and get your son dressed. You react to a verbal request with no hesitation. You do it because you have spent years waiting for your son to talk. Years crouching down, holding up picture sequence cards and trying to work out what your son wants. Years praying to hear his voice, the tone, the amplification, the bit of his personality that you have waited to get to know.
As you turn into the carpark and watch his face light up at the Morrison’s sign, you feel a lump in your throat. You feel emotional, because you remember the blank stare he always had across his face, just looking at the back of the car seat in front of him. No pointing at the trees flying past, or screams in excitement at the sun as it followed our journey from the sky.
As you step out the car and take his hand, you well up when you ask him “Rhys, carry bag?” and he takes the shopping bag in his hand. Your son who could not follow any instruction. Where language was just a mash of sounds that he could not process, meaning calm words in scary situations had no effect, or words of warning were as good as not being heard. But he can now understand.
You feel like you have hit the jackpot, when you walk hand in hand into the shop, the shopping bag held in his hand. Yes, just calmly walk into a shop! A place where surfaces beam bright light, strange beeps and pings hit the ears and vibrations of trolley wheels penetrate the body with pain. An environment where you have sat on the floor so many times. Your son in an uncontrollable meltdown, kicking and screaming in an environment he cannot tolerate. But today you just walk!
“What do you want?” you ask, crouching down to your son’s level, knowing your stuff and how to talk to your son, the years of education you have taught yourself and the snipits of information you have grasped from the limited professional help you have been provided. “Chocolate cake” he says with no hesitation, but waits for your lead. An exchange of conversation you never imagined would ever happen. A moment of exchange between both of you, where you have reached a stage of understanding. The pain of constant strategy, baby steps and the goals it results in, have all been worth it.
As you walk into the bakery isle, you son points to a cake with no hesitation. With no delay of deciding what to choose. You don’t challenge it, you take the cake he has pointed to, the double tier chocolate cake for twelve, when you cleary know there are only five in your family. It is because of his action. The action you spent months and months working on by physically holding out his arm, placing his fingers in a fist and letting his index finger point at objects.
You then let him carry his cake to the self serve till and push the boundary like you have done so many times before. You pray you are not going to push your son too far, too far that things will fall apart and put you back on the floor in a meltdown situation. But without trying you will never move forward, and you know if it fails, you will learn how to adapt for next time. So you instruct your son to scan his cake. You show him the bar code, and let him wait for the beep. You then direct his finger to the touch screen and you both press “checkout” together, and wait for the last beep as you help him touch the reader with your card. Then you punch the air in triumph, because this simple goal for others, is something you dreamed would never be possible for your boy.
As you walk out the shop you loose control of your emotions when your son, holding his cake, in amplified tone, shouts “Chocolate cake” at the security guard. It is only 07:30am, and that has made that guy’s day.
So this morning we had a sugar breakfast. But today was a day where “No” was not an option!
To all those parents who are unable to take their children anywhere. To the parents who sit on the ground trying to calm down their kicking and screaming child. To those parents who feel they are clueless and lost and drowning.
You are not alone.
Keep trying.
Keep hope.
Keep your head up high.
It may not feel like it now, but you are doing an amazing job. You are helping your children find their way. You are creating a foundation you and your child can build on together.
You will look back at your past self, and never imagine reaching the place you are now.
And who knows what the future has in store!
For us, it will be a chocolate cake breakfast every Saturday! Because I want to start every day like we started off today! And I hope you can too!
