The last couple of weeks have been pretty rough for us all, well really for C but as always we have just gone along for the ride. Starting the new school year has been tricky for both C and myself. The move to a bigger class, a new classroom and a new teacher has been really hard. It has been horrid for me to watch him struggle and suffer and as always never really knowing what I can do, to make it that bit easier for him.
As I have said before, I worry a lot about him being at school. I find it extremely hard to let him go, knowing that I am not there to protect him from everything. I have to trust the staff to do all this for me. But I also worry so much about him being judged by others. How much do people really understand? Do his class mates get cross at him because he can’t sit still? Do they get annoyed that he has zero volume control? Do they get upset when he pushes them in the queue? And my worst fear; is he getting left on his own at playtime as no one want to play with a little boy who can be so demanding and bossy! Do the children all go home and complain about him to their parents? And, if so what do they say? I’d really hope they try and explain why he does these things and that he doesn’t mean to. But do they actually understand themselves? Are they in a place to explain?
All parents of autistic children want understanding and acceptance but for this to happen we first surely need others to have the knowledge about autism. I have never told anyone at school that C is autistic and school can’t say anything. So how can I expect them not to think C is just naughty? One the main reasons for writing my blog was to try and get others to understand a little more about autism. If people don’t explain about it, how can we ever expect people who have never lived with it, to get it?
So after being inspired by another mother the other day I thought I would write a letter to all parents at C’s school to try and help them understand and hopefully put them in a better position to explain to their children a little more about ASD. Whether I actually ever have the courage to hand it out is another matter but here it is….
My name is Lottie and I am the proud mummy of two little mini-beasts C & G. I realize that this isn’t the normal things that mums do, but I just wanted to write a short letter to everyone in the school to try and explain a little about autism because C is autistic. Some of you many already know lots and others may know very little. Before I go on, please don’t think I am being patronizing or condescending to any one of you!!
Autism is one of the top hidden disabilities and therefore can be very hard to spot. People who have it look completely ‘normal’! You will have all heard about it but most of you will not have been directly affected by it.
Every parent wants their child to be accepted by their class mates. They want their child to enjoy school and make friends. They want their child to be happy! As a mother one of my biggest fears is that C ends up hating school. One in 5 children who are autistic ends up getting home schooled because they cannot cope with the school environment. I think this is extremely sad because school can be a super place, but I can also see how it happens. There is a scarily high rate of bullying of autistic children. This I am sure is mainly because other children don’t understand why said child behaves how they do. Again I really can see how easily this can happen. And I think this is why I have taken this step and written this letter. No one can understand, and they shouldn’t be expected to get it, if they don’t have the knowledge about something in the first place. One of the things most autistic people and parents of autistic children bang on about all the time is acceptance. But it occurred to me the other night that how can we expect this if people, for 1. don’t know and 2. don’t understand.
Children who are autistic want to join in, they want to play, they want to learn. But they just need a little bit more help and support. Many autistic children have sensory issues which means they can seem rough during play, pushy in the lunch queue, they can be massively affected by big spaces, loud noises, bright lights and they can have no volume control so seem to shout. They can have extremely high anxiety levels which means they need to be in control the whole time, which pretty much always comes across as extremely bossy and demanding. They are very visual learners, so they often need to see something before they understand. But because they are so visual, their brains are taking in so much information they can very easily become overloaded. Their language skills can often seem very advanced but actually they cannot process lots of information at once, which means they need things explaining in as few words as possible. Because it takes time to process, they can seem rude or as if they are not listening; count to 15 before you repeat. Change can be extremely hard. They need a fixed routine. They need a lot of warning before something happens. Transitioning between one activity to another can be super tricky.
When children get overloaded they very often have meltdowns. These can seem like tantrums from the outside but are anything but. Its when they have become so overloaded by what is going on around them they cannot cope anymore They need to be seen and handled as a panic attack and not a stroppy child who has not got their own way. As a parent I find these extremely hard as they are uncontrollable and can result in me being hit, kicked, screamed at and anything in range thrown at me. Never-mind the fact that if they happen out in public you are judged and thought of as a bad parent.
C is just like any other 5 year old. He so wants his friends around to play, he wants to go around to other peoples houses and play. He wants to go to the park, he wants to go to birthday parties. He wants the same as all children. But these simple activities can have a massive impact on him and us as a family. For example, to go to a birthday party can take a whole week of preparation. He needs to know who will be there, where it will be, what will happen. And then once we arrive it can take him ages to find the courage to walk in. The noise can be completely overwhelming. The excitement can be uncontrollable. He can manage about an hour before he stops listening to me, starts running around at 100mph, goes bright red and starts to sweat. Now its time to leave and get home, asap. He is now showing all the signs he is seriously overloaded; a meltdown is brewing. But by this point he can be too close to the meltdown for me to be able to get him to leave without pushing him over the edge. The line is so fine. Because he is only 5, he is still too young to fully read the signs himself so as a parent I need to do this for him. I also need to help him learn how to manage himself. When it is time to leave? When it is time to go and quite literally sit in a dark room?
He is already beginning to feel these signs but is still too young to get it, so he doesn’t react in the safest possible way. A lot of autistic children are runners, and added to the fact that many also have no sense of danger it can be a pretty stressful mix. When things get to much he can quite often just take off. This is why if I am talking to you in the playground and seem I am only half listening, its because I am watching the classroom door. I may seem crazy and rude but if I don’t grab C as he comes out of the classroom, he will be off. Most of the time he will go back to the car and get in it, but if he is already zoned out, he will just run straight past. Cars and roads will not stop him!
So please don’t think C is bad, naughty or rude. I don’t want you to think I am after people to ask C over to play, or expect him to be asked to every party. I would love to have his friends over to play and give him birthday partied but right now, I am honestly not sure he or I could handle it. He is doing really well at school and that has a lot to do with the super staff and lovely children. I am not ever after sympathy for either him or me, only ever understanding!
Thank you for taking the time to read this from a proud but as ever worried mother.