8 April 2017

Autism Awareness - #YourJourneyMyBlog - Living With A Jude

The month of April is best known for the explosion of Easter Bunnies, obscene amounts of chocolate as gifts for children and a magnificent feast to celebrate the resurrection of Christ. To many people April is Easter, they plan, they organise, many months in advance sometimes, Children have the time of their lives, gorging on chocolate, receiving gifts from extended family members, but to me, April is Autism Awareness month.

So to celebrate this, I am going to dedicate my blog for a whole month to families who wish to share their Autism Journey with you.

Some of these people have autism themselves, some are autistic parents to autistic children. We have teachers with autistic students and even Bloggers who want share their journey with me, which I am very grateful for. 

I talk of Jude’s journey in the present tense because I don’t think, despite him now being eleven years old, it has ever reached an end in terms of finding the right support and care that he needs. It’s because of the nightmares we have faced in battling the council for adequate support that I decided to start writing my blog in the first place. Last week I published a letter that I wrote to our council and it was only following a bombardment on Twitter and over the phone that they finally kicked into gear and called me back. It’s utterly exhausting and at times I feel broken.

Jude doesn’t have an official diagnosis of autism at the moment however he has a three hour assessment this week for professionals to try and decifer if he is on the spectrum. I would literally bet my life that he is which is why I confidently describe Jude’s disabilities as being Microcephaly, Global Development Delay and Autism. May I add that I requested this assessment for Jude back in October 2015 and it is only now that we are being seen. Is it just me or is a year and a half wait a little on the ridiculous side? Our council won’t apologise for this, they just normalise this level of inadequacy to the point where you’re just grateful if they return your call.

Jude as a two year old - this picture has always made me laugh because of his little face. He had to wear braces as he had no butt so trousers always fell down on him! He was in nappies until he was four which didn’t help clothing either.

Jude was born on the 20th March 2006 following a two day labour. It’s funny because his due date was the 18th and all my friends laughed that he would definitely be born on time as I’m never late to anything. My labour begun in the evening of the 18th however, Jude wasn’t in any rush to enter this world.

I was part of a lovely NCT group and it was from watching Jude alongside the five other babies that I started to notice that he wasn’t entirely like them. It was as if he was vacant of thought at time, you could literally lie him under his baby gym and he’d just lie there staring into space. All the other babies tried to reach out, kick their legs and wave their arms but Jude never did. I had to battle with our GP to get a referral to the paediatrician but after my third visit they gave me the green light to call her up and arrange a visit at the Children’s Centre at Addenbrookes Hospital in Cambridge.

Our Paediatrician was amazing, she gave me her direct number and was available for a talk whenever I wanted. She agreed there was something “not quite right” with his development so our initial port of call to help him was with the Physiotherapist and Occupational Therapist. Again, what fantastic ladies. They used to see Jude every week and because at seven months he could sit up, the first thing we had to do was teach him to move his hands to the side and slide his knees under into a crawling position. It seems so funny now but it was necessary to teach Jude every physical movement he needed. When he was twenty months I’d hold his feet in each hand and move them in steps across the room and after a couple of months he mastered it himself. He was so thrilled to be able to walk!

This sadly, was the just the start of the many twists and turns along our eleven years of Jude. 

Our journey through life with a special needs child certainly keeps us on our toes. I’m exhausted ninety nine percent of the time both physically and mentally because of the constant chasing I have to do to try and get Jude what he needs and this can have a detrimental effect on the rest of the family. I’m emotional. I often avoid social situations with Jude because of his mannerisms, the vulnerability he can display as well as the unpredictability of his behaviour. He’s a big boy now and I’m beginning to struggle to cope with him. My current battle with the council is being well documented on my blog as I want to look back in ten years time and see how far we have come. I’m a very strong person now and it’s amazing how thick a skin you develop! 

Jude with his new headphones! We got these to use as a calming mechanism. Sadly, they have now been broken but I intend to buy him a new pair once he has moved out of his current and somewhat volatile phase.

What I’d like most for Jude is for society to accept that not everyone thinks and moves in the same way. Jude is different but he isn’t someone to avoid in the street or stare at which is sadly something we experience on a very regular basis. 

When you get to know him, he’s a very funny, affectionate and happy little boy and it’s during times like Autism Awareness Month that we should really stop and think about the wider echelons of our society. 

This beautiful post was written by Alice Soule who has her own Facebook page over at Living With A Jude

You can also follow Alice & Jude on her blog Living With A Jude

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