Early intervention

I probably do make decisions that others find hard to understand.

I probably do over analyse everything, especially things to do with my son.

I probably approach things with more anxiety, caution and sensitivity.

I never thought Charlie would speak like other kids, understand emotion, make friends, be independent, be able to play games and join mummy’s dance class.

When you get a diagnosis of autism it’s scary, upsetting, you’re stepping into the unknown, and you’re told things and read and research things that leave a lump in your throat and a knot in your stomach.

Hearing your child say I love you is a thing most parents take for granted. image Charlie learnt to speak using echolalia – learnt phrases or echoed speech (copying his favourite TV programmes, copying others around him) so until very recently Charlie would only ever echo me if I said this to him. To hear him say “I love you” without prompting makes me want to cry my eyes out!

For me, intensely working with Charlie and helping every area of his development is key to giving him the best start in life.

Its hard at times, it’s repetitive, he has taught me about patience, being calm and appreciating the little things in life that we so often take for granted but are such a big achievement.

So for now my decisions may not make sense to everyone but they are right for us, right now, at the time of Charlies life that is so key.


The boy who didn’t like Christmas

So at 4 years old most children are well and truly into the swing of how Christmas, birthdays and special occasions work. The presents, parties, birthday cake, Christmas trees, all the special events at school or pre school to mark the occasion.

When your mind is very logical, practical and matter of fact, liking routine and structure and finding comfort in things being regular, the same, as expected, run of the mill- as you can imagine Christmas can take a bit of getting used to.image

This Christmas was like a first Christmas for Charlie and I – he enjoyed opening presents, singing Christmas songs, being in the nativity, watching Christmas films (although we’ve been watching the polar express since august) “the Christmas train” is a favourite regardless of what season it is!

You see one of our goals this year was to get used to opening presents. Charlie watched you tube videos of kids opening toys, we would regularly buy small gifts and make a real fuss of opening them. “Unboxing time” slowly became an enjoyable activity, rather than the upsetting, unsettling experience it had been in the past. He realised that the element of surprise is something fun and exciting rather than scary and upsetting.

His innonence and selfless approach to things just melts my heart. He woke up on Christmas Day seeing all the presents from Father Christmas and said “Mummy, which one is Charlie’s?” When I told him they were all for him his little face was a picture. “All for me? Really mummy?”

Its the little things that make a difference to him  – he was in charge of collecting all the wrapping paper at our huge family Boxing Day, he loves a job and for things to be tidy :0), he joined us at the table for just part of Christmas dinner and wasn’t forced to sit for 2 hours, he tucked himself in my Auntys huge bed when the party got too noisy. All these things mean that Charlie was able to enjoy it in his own way.

So you see the boy who didn’t like Christmas has now enjoyed his first real one with all the trimmings.

The ludricous process that is the “Statement of special needs”

Well! Where do I start?!!

Firstly let me just make it clear that a child getting “extra help” at school doesn’t just get it by the drop of a hat. I have had many people comment “Well now you have a diagnosis of Autism you’ll get extra help” This couldn’t be further from the truth.

It’s an exhausting, emotional process where you have to write lengthy reports detailing everything about your child, requesting reports from all sorts of professionals, chasing, following up and ensuring all information is pulled together. For me this took several months and was an upsetting process. After all this time, emotion and stress you are then told (apparently as a matter of course regardless of your child’s needs) that your request to assess your child is refused.

To me this is to test your determination. At this stage a lot of parents give up, they’ve got no energy left to fight after months of focussing, writing and talking about all the struggles their child has. I was one of the few to not accept that refusal, I appealed and wrote again, in detail, about why I felt my son should get the help he deserved.

We finally after 9 months got a statement of special needs after numerous phonecalls, meetings, reports and pleading that they take note of his need for help.

After just one term at school and we are already back to requesting that his hours don’t drop in January. I am a determined, positive and driven parent, but there are days when I just want to SCREAM!! Why should my little baby have to go through all of these processes and procedures simply to have some extra help to allow him to access his schooling??

The time and energy wasted on meetings about meetings, management board decisions, and paper pushing exercises simply to say yes or no as to whether these kids need help, is absolutely ludicrous.

Do they ever stop and think for a second that any parent or teacher would go through all this endless campaigning and not have a genuine reason to?…………

Mainstream education for special needs children – In the beginning

Ok so here goes!

My son’s journey started at 2 years old starting at our local pre school. This experience was one that I will never forget and will influence all the decisions I make about how my son is treated, looked after, understood and most importantly made to feel comfortable.

The lack of understanding, empathy and support meant that he would hide in the toilet playing with the water (I know now a classic sensory strategy to calm himself), he would lay on the playground floor and not want to come inside (to a noisy, small classroom where teachers had no empathy or understanding) He would scream on the way in, on the way out and be visibly shaken some days. We were asked not to attend the Christmas nativity, the Christmas party as it would be too much for him?!! So much for inclusion hey…..Suffice to say we removed him from this hell after what must have seemed an eternity to him but was just one term.

My lovely friend that ran a pre school (albeit 20 miles away) offered us a place. The relief, happiness and support she brought our way was overwhelming. He was welcomed with open arms, the anxious behaviours vanished and I will never forget how much this meant to us and how important this part of our journey was. Unfortunately the journey to get him there became too much of a struggle taking well over an hour some days and it just became too much. Julie, you were like a shining light for us and your acceptance and understanding of Charlie’s little quirks means so much.

Our next beacon of light came in the form of St Margarets pre school or ‘Wendy’s house’ as Charlie affectionately calls it. Wendy is a breath of fresh air and is probably the most warm, friendly, nurturing, thoughtful teacher I know. Her level of commitment in helping and supporting me to apply for our statement of special needs was outstanding, talking to me about every professionals appointment including Paedetricians, Speech and language therapists, educational psychologists, occupational therapists, genetics consultants the list goes on. Her empathy, big cuddles on a bad day (for me and Charlie), going above and beyond in so many ways – she really did and always will mean so much to us.

Throughout Charlie’s time at St Maragarets I was applying with Charlie’s statement of special needs to give him the help and support he needed when he started infant school. Who knew this process could be one of the most heart wrenching, frustrating and damn right ludicrous things I have ever done. This requires a whole blog post to itself so watch this space…!

Our journey continues and I can’t wait to share more with you…oh and by the way I will take the special any day xx

That knot in the tummy that never goes away…

This week’s post is focussed on ANXIETY.

Such a debilitating and underestimated ‘side effect’ of Autism.

The recurring and common theme throughout everything we do is all centred around managing, predicting, pre empting and fighting the levels of anxiety that my son is dealing with.

It’s exhausting, upsetting and at times frustrating. I want to just be able to deal with it for him. I would do anything to take that terrible feeling away from my sensitive, happy little boy.

Even at his young age he tries to manage it himself, but sometimes this just becomes too much. It’s like a champagne bottle being shaken up, eventually that anxiety is crippling and takes over – the cork pops and he reaches the stage where he is no longer able to reason with it.

Situations, people, places, atmosphere, noises, textures and almost anything could increase his anxiety. That’s why it’s such a tricky thing to manage because the ‘Anxiety’ is so Jekyll & Hyde.

The most important thing in dealing with anxiety is finding his ‘comforts’ – whether that be certain people, situations or environments that make him feel at ease. There’s always a balance to strike to keep that knot in his stomach at bay.

No grey area

I feel myself saying very often that everything in our house is either black or white.

Perfectly described by a little while ago I was singing “the sun has got his hat on…” And Charlie stared at me perplexed…. “Er no it hasn’t mummy!”

He is very straight forward the world to him is viewed in black and white, no grey areas here!

This can be tricky when a situation has to be adapted, changed or different to what is expected.

It does have it’s benefits though. Charlie would never lie, he almost doesn’t know how to. In his head it is what it is. His honesty, literal thinking and straight forward manner are what makes me love him even more.

From a teaching perspective with particular pupils of mine with similar traits to my son, I have learnt to be even more clear and literal in my teaching points. Teaching dance this can be challenging at times “let’s smash it” …. “Smash what” ?! It has definitely improved my etching and given me a whole new outlook in the language we use and what it means to my students.

My special boy

We all believe our children are special don’t we? Every child has their own unique quirks, talents and little individual ways of doing things.

My son is Autistic. To me this is what makes him who he is. I would never want to take it away from him.

What I would want to take away is the anxiety, the desperate desire to make himself heard when he isn’t always able to and most of all I’d want to take away other peoples ignorance.

This is the most hurtful thing to have to deal with. You get used to the looks or stares when he’s having a particularly difficult moment, but the ignorance gets to you when it’s people close, people that perhaps I expected would want to understand.

So, back to my special boy. He’s my life, my everything. If anyone wants to know more, understand his quirks or simply is intrigued to know more about autism I’m more than happy to share with you what I’ve learnt.

Please ask, I’d love to share …