Saturday, 7 July 2012

Supermarket Meltdowns

My 4 year old son starts school in September and of course in any family this is big news. My baby boy is growing up, leaving nursery and joining big school with his big brother and his baby sister is taking his place at nursery. Part of the normal cycle of family life.

For us though, this has been anything but normal. When I think back to when number one son started school, my feelings couldn't have been more different. I was confident about his ability to fit in, to progress, to get the most out of school. I took it absolutely for granted that this next step in his life would go smoothly, that after a couple of (expected) tears at the classroom door, that he would be flying. And he has... he is happy, popular, well behaved, progressing academically and apparently a pleasure to have in the class.

My second son is a sociable, beautiful character with a delightful sense of humour. He has brilliant rythym and loves music. He is a speed demon on his scooter and he will bounce happily on the trampoline for hours given the chance with the biggest smile you have ever seen on a child. People who take the time to get to know him fall in love with him.

If you don't get to know him though, its unlikely that you will understand much of what he has to say because he has a condition called Verbal Dyspraxia. Put simply this means that the messages from his brain get mixed up between there and his mouth, to the extent that he can sometimes sound like he is speaking another language. For him 'milk' is 'lunk' and 'football' is 'biffall' to descibe a couple of examples. He is also generally delayed and so in some ways is younger than his body would tell us he is. It has also become apparent that his receptive language and comprehension is also limited which means that he doesn't understand everything you have to say either.

Think about that for a second and try to imagine his frustration.

Then add a thing called 'sensory processing difficulties' into the mix. Sensory processing is the way we all make sense of the world. How we interpret our feelings, emotions, touch, pain, sound, movement etc and even time. When a person has difficulty with any of these, certain situations can become bewildering. confusing and even scary. It doesnt take a professional to work out that a child experiencing any of these feelings will act up. Chuck in a lack of impulse control and you're in for fireworks.

Imagine not understanding everything that is said to you, plus those around you not always understanding you either, and then imagine experiencing a rising sense of panic and bewilderment when anything unexpected happens.

My son responds beautifully to predictability and routine and sadly it has taken us quite a while to really understand this, because we are not generally the 'routine' kind of family. Now we have routines for everything. If we deviate from these routines we risk meltdowns which have the potential to change the whole day. The thing to remember about these routines though, is that they are subject to change with no notice... the rules set by our son and our failure to keep to the rules... again... results in consequences for us all.

His response to routines however is one of my greatest hopes for school. Certainly in Reception class, they have lots of routine, things happen at certain times and in certain ways and he will be fine with that once he gets used to them.

Wierdly the fact that he does repond so well has been one of our greatest personal frustrations. Why?! I hear you ask. It is because it makes people doubt you. When you turn up at Nursery utterly frazzled with a child that you are a hairsbreadth away from putting on Ebay, they simply dont understand. Because the second he walks over their safe predictable threshold, he turns into a compliant little angel.

I've had staff staring at me like I'm from another planet and I've gone home and cried in frustration. Is it just us? Maybe we are just terrible parents? Maybe he is just naughty and we have lost control of him. However well meaning staff are in telling me how wonderful he is, every word used to feel like an indictment of my parenting skills. There was a point when I genuinely felt that they thought I was making a fuss out of nothing, that perhaps I was even suffering something like Munchausens syndrome, that I was looking for a problem where there was none. I still get days like that actually.

And I don't think I'm alone in this feeling. It is an extraordinarily isolating feeling.

Unfortunately friends don't really understand either. As a family of a child with extra needs, we have a lot on our plate. Our lives in many ways revolve around his needs. My 6 (nearly 7) year old is expected to jump through the same hoops we do as parents, make allowances and excuses for his behaviour. I frequently feel sorry for him but what can I do?

So when I make certain decisions, like coming home early from a rainy holiday, or not doing certain activities on certain days, its not because I'm an inadequate parent, or selfish, or anything else you may care to discuss amoung yourselves, it's because I have the longer game in mind. Saving activities for a day when my son can concentrate on the fun he is having rather than the rain on his face which is painfully distracting for him, the cold fingers that distract him more than Peppa Pig or Thomas the Tank can. Avoiding the feel of raincoats which he finds unbearable. I make these decisions because I know my child. I don't expect everyone to understand his needs and my actions to respond to his needs but I do need people to respect my decisions as a parent.

All this said, transition to school would have been an absolute nightmare if it weren't for the local Early Years Service. The staff have been amazing. They genuinely seem to care about his progress and school experience. They also genuinely seem to want our input as parents and I get the distinct impression that they believe us! Its liberating. It has taken a very long time to reach the stage of support we now receive for our lovely boy and the relief is extraordinary.

My son is a gift. His easy smile and laugh are catching. I love him to distraction, as I do all my 3 children but when 1 of those children is a fulltime occupation I don't have the time to be continually explaining everything to people who can't see the facts past their own opinion. So the next time you see a mother watching a small boy twirling round on his back in the cheeses aisle in the supermarket while screaming, please don't tut, definately please don't feel the need to give advice ("what he needs is a smacked bottom" is NOT helpful in this situation) and whatever you do don't report them to security. If you must do something, just smile in sympathy with the poor woman and try not to run the kid over with your trolley.