First Day Back After Half Term

Every school morning can be quite an emotional struggle for my little boy and with it being a half term its always a harder one to go back. MacKenzie has had all his visual preps and had fully understood when he was going back to school, but Monday morning as soon as he awoke the upset began. Begging not to go, crying and saying he was poorly. Even though his speech is really good now people don’t understand that he doesn’t take in some of the information you verbally give him. When it comes to talking about feelings and emotions he just doesn’t relate, therefore it makes it so much harder to go through things with him like other parents will do naturally.

I felt like my insides had broken into a million pieces on Monday morning but i knew i had to send him to school no matter how upset he was. A few days ago when MacKenzie knew that going back to school was not too far away, i started trying to encourage him by asking him if he wanted me to print a map of where we had been on holiday (he likes maps and fact based things) to show his teacher or class mates…..but no. I cant even get him to relate to that he will see his friends or even if he has missed them, sometimes children want to go back to school to see their friends if they haven’t seen them over the holidays.

I am very aware that all children at some point go through the stage where they don’t want to go to school and they all `try it on` with their parents feelings but this has been ongoing since day one. The only problem we come up against is that that school report he is a happy child there (which don’t get me wrong is great to here) so then it looks like he is playing us. I do believe he is very good at hiding his problems and anxieties especially in structure environments and this can end up being a much larger problem. Also from a selfish point of view it leaves us with no help on this matter as nobody else sees it.

I would love to hear from people who can relate to this, because feeling alone and dealing with your child is really very hard. I found hope and strength thorough reading and realising that i am not on my own, there are too others out there with the same problems.

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Benefits of having a diagnosis

Many parents are still out there dealing with their undiagnosed autistic children alone, worried and confused. I understand that paediatricians don’t like ‘labelling’ children early because its quite a strong thing for the child to then carry for the rest of their life’s, so they do need to make sure that its something they have got 100% correct and that its not something that the child’s not just going to grow out of. But on the other hand the time from when a parent or other health professional realises there is a problem with the child which could be around 2 years (was in our case) to the time the paediatrician can confidently diagnose which could easily be anything from 5-12 years old a lot of time is in the middle. Within that time a lot of damage can be done by parents left struggling wondering what is really wrong with their child or even worst of all giving up the fight ( and it is a fight) and just put themselves down as a bad parent and the child as being naughty.
A diagnose does give the parent and the child a stronger focus and strength, yes of course it must be a devastating shock at first but then gives the family a clear route of what help they can access. Also when their child is struggling (and they do from time to time) outside publicly instead of being quickly judged by outsiders parents can confidently tell others their child suffers from Autism or ASD and it’s not their fault. Being in that situation where you are trying to sort your child out is upsetting enough and then on top of it knowing what others are thinking…….I have been there many times.
I clearly understand that getting a diagnoses doesn’t make autism go away like many other things, normally we go to the doctors for them to tell us what is wrong with us then we have treatment or further tests and then the problem is sorted. With an autism diagnoses there is no medicine or operation it just gives the family and others around the chance of learning about their child and changing/learning how to bring their child up because treating and understand these children differently from has early as possible really does improve their life……I am talking from experience.
If you are awaiting a diagnoses for your child don’t be scared, look at it has being the best tool you will be given to help your child mentally, emotionally, socially and educationally.
We are a family without a diagnose of autism for our child but strongly beleive in what we know, don’t get me wrong we do go through times of questioning ourselves and giving up but it’s what you believe in the majority of the time that really matters but unfortunatly I think there is only a small percentage of us out there and I would like to empower others be advocates for their children. Just keep Remembering you know your child better than anybody and you wouldn’t want to put in place such a strong label on them for nothing.

Autism or Not?

A journey of nearly 4 years now and still really we don’t know ‘Autism or Not?’.

The professionals involved say not, they put it down to his Speech and Language Disorder which impacts on his social communication skills.

Bring MacKenzie up is a roller coaster and has been a steep learning curve even for myself with all the background training and experience I have, so being a parent without that advantage must be a lot tougher.

In the early days I felt like a bad parent, that I had done something wrong but I think I am stronger now and more confident…..it does come in time.MacKenzie has lived on visuals since about the age of 2 and a half years old. ‘Now and Then’ pictures, a daily visual chart which consisted of four photos of what’s his routine would be for that day. It was really tough planning your day in photos and then obviously not breaking it after showing him, I’ve done that a couple of times…..the amount of pain you cause.

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Now at 5 years old nearly 6 we are onto a 3 month visual calendar and have been for the last 6 months. Quite a complexed set up for someone that young but he likes it and can understand the coloured key code which it is set by.

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When out and about I can now tell MacKenzie what is happening now and then, he prefers to say “first and then”. As long as I keep it to no more then 3 things ie. shops etc he is ok.

The only other problem is when out and about MacKenzie gets over stimulated in a lot of bright, loud environments and then you can mentally lose him……so everything can go right out of the window. His voice will go up several levels and you will loss eye contact completely. At this stage I will hear the comments or have them directly said to me “what’s that child had for breakfast” “has he been on the smarties” “he’s full of beans” “he will sleep tonight”. I know these comments are kind of harmless but when you hear it nearly every time you go out it really hurts. All eyes on you and your child just on a simple trip to Tesco, this just makes life ten times harder than what it already is. Not being able to physically see a disability people are so quick to judge. A disability in which a person see things different or may react in a different way to how we might should be take as serious as seeing someone in a wheelchair.

Since MacKenzie has been able to communicate more he once said while in a supermarket “loud beeps” when I asked him about this he told me he could hear the tills beeping (the scanners) and we were not anywhere near them, even listening very hard I still couldn’t  hear. We don’t realise what it must be like but just think about next time you go into a shop or supermarket turning all the background noise up so loud you can’t think straight. Being in this different world has made me look at so much, for instant when we go into a shop the background noises are there we just don’t think about them or take much notice of them. We have the ability to cut them out and get on with the task ahead…..but what if you couldn’t.

MacKenzie also has a diagnoses of Hyperacusis (this is a condition characterised by an over sensitivity to certain frequency ranges of sound, a collapsed tolerance to usual environmental sounds). At the same time was also diagnosed with Tinnitus.
There is no cure for these problems it’s just something we and MacKenzie have to learn to manage. He doesn’t mention the tinnitus alot just sometime specially if its quiet like at bedtime and he can become very frightened that the bees are there. It’s really sad but there is nothing I can do. The hearing specialist recommended to talk positively about the bees or that he may like to name them but he prefers not to. The good thing about it is that if he had have developed it much later then he would know a difference, but he thinks we can all hear them. I don’t agree with lying and I feel really bad when he looks scared and asks me if I can hear them, I tell him no because he must have super powers and only special people can hear.

There are also other problems MacKenzie has or has had and learnt how to mange which another child would naturally just get on with. He was placed under a Occupational Therapist just before starting school in June 2011, for his sensory problems. The results were that he had problems with auditory processing, tactile processing (tactile defensive) and a sensory seeker.
Just after learning to walk he would come upto me screaming holding his hand out for me to brush his palm over with my hand but wouldn’t stop screaming if I didn’t do it twice, everything had to be in a certain way and in a routine. I can remember when he first started nursery telling them that he would hold his hand out like it was dirty but if they brushed over twice then he would stay calm…..I thought I was nuts for telling them but at that time I didn’t care about what I sounded like just that it was so important to him. Things have got better since then he can now touch water, sand, grass, snow all the things we take for granted. He does manage himself well and will slowly on his own introduce himself first before jumping into these tactile things. Washing hair is still an issue but slowly slowly…..from shampooing hair once every 6 weeks to maybe once every 3 weeks (good job he is a boy). Staying with the bathroom theme about 18 months ago MacKenzie couldn’t even sit on the toilet seat after someone else because he said it felt soft and he would be so distressed and angry he just couldn’t, we had to wipe it several times just to get the hardness and coldness back before he could sit on it. But it goes to show that the problem still remains its just how he comes to understand and manage it in his own mind. He will now sometimes say”l like your soft now, it ok”.Clothes and bedding aren’t has easy like with coats he will like the lining of the inside of the main of the coat but as soon as his arm goes through the lining of the inside of the sleeve (which is often different) he will take it straight out and say he can’t wear it. We are alright with t/shirts but cotton shirts etc is a no no. Recently they had a dress up day at school and he didnt like the feel of the fabric of the pants and therefore on his own rubbed his legs up and down quite hard and then pressed them firmly with his hands before putting the pants back on But at least these days we don’t get the screaming he will say its doesn’t feel right. He is really clever at now managing these problems and we do get less outbursts, sometimes in certain situations/environments he will now communicate and say he needs softing, he response really well to deep pressure touch when needs calming.

All these issues have been mainly put down to him having a speech and language disorder and not autism but yet we live that high function autism life. Everything has to be taught to him which is normally just picked up, you can’t just presume he knows it even with basic things.

His language is doing really well now he does mix up he and she a lot still and it can be quite funny at times when you are out and he is talking none stop loud and says “he is very tall” when quite blatantly obvious it’s a lady. Literal language is the hardest has he has  just started to  understand that saying “you are a silly sausage” is a joke, so in every day life I do have to constantly watch what I say or do a lot of explain which might then go right over his head……see what I mean!

Please feel free to comment if you can relate to any of these issues I have brought forward or feel like you are in similar situation.

Autism Awareness Day 2nd April

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1 in 100 people in the UK have Autism and how many people know anything about it. We need to make people aware and promote it in a positive way, making those with the disability and their families a feeling of being accepted.

Lets bring our children up with the attitude that others may have social difficulties and that it is not weird. Learn them what Autism is and how it effects children and adults, therefore knowledge promotes a better understanding and kindness.

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