The Boy With The Curly Hair | Life with Autism Series

This week, and for the next week or two, I’ll be sharing stories by some of my amazing friends, about their wonderful children.

Tonight’s story is by my beautiful friend Charlotte. I met her just over six years ago, when our boys were little and showed quite similar behaviours and traits. Now, the boys couldn’t be more different. Here she tells her story.

I’d always wanted two children of a similar age, with the expectations of them growing up together, playing, fighting, the things your ‘average’ siblings do. Nothing could have prepared us for the life we have now; that said I love both my children unconditionally.

Autism is hard…my child has the type of autism people don’t talk about. It seems almost taboo to discuss core autism that can present severe challenging behaviour. You occasionally see headlines discussing success stories of those who have autism but have managed to live pretty independently. Not much is said about those who need round the clock care. At 18 months old, James was referred to a Paediatrician and a year later, diagnosed with Autism. At 2 and a half years old, it really is difficult to predict the impact Autism would have on James and our family.

At aged 4, James was due to be starting a special educational needs school, the only one that stated they could meet his needs. James’ behaviour became more aggressive and after a freak accident, needing facial surgery, a psychiatrist suggested a short 3 month assessment unit, to get to know James and look at ways of going forward. This never came about, and James had heavy home interventions from the mental health crisis team, where he was monitored on medications (which he didn’t react well to) and also put on 2:1 care. This means, at the age of only 4 years old, James required in public, two adults, to keep both him and everyone else safe.

James at the Beach!

That summer of 2017, was one of the hardest we’ve encountered to date. James would need physical intervention several times a day and he would often have to be handled to his padded room. This being the only means of keeping him safe from hurting himself and others. He would lash out, head butt, bite and was purely a danger to himself. With the apparent cognition of a 8 month old, it seems as though he was as a ‘baby’ trapped in a bigger frustrated body with no functional means of communication. We were often reminded by professionals of the term; ‘fight or flight’. Although this didn’t make things easier to cope with, it reminded us, this was NOT James’s fault.

Some of the injuries James has caused Charlotte when exhibiting some of his more challenging behaviour.

Over the years, we’ve found ways of calming James and trying to anticipate when an episode was beginning to occur. We’ve attended courses, listened to OT and read endlessly, but above all learnt from a few families in similar positions and working in several special educational needs schools. Currently, James is too big for me to handle on my own, while he still remains unpredictable. This has meant my husband becoming James’s full time carer and let’s say he works hard every day for his small amount of carers allowance! Social services often receive negative press, but for us they have made a huge difference in keeping our family together. With estranged family, it would be impossible to meet both children’s needs on our own and keep our sanity! They have provided us 4 carers, who love him and are perfectly tuned into him and residential short breaks, which we are ever grateful for.

Before I met my husband, in 2010 I completed a degree in Disability Studies and Child Care, where I spent many long nights reading and completing assignments. I remember clearly, one assignment being ‘The impact of siblings, when living with a disabled child’- It would be an interesting read now and a lot closer to my heart.

James and his older sister Alesha

Now nearly 7 years old, James has grown into a gorgeous, not so little bouncy boy, with big brown curls and beautiful blue eyes. The journey has been anything but smooth, but his big smile melts your heart and those who meet him. His sister now 8, loves him beyond words, but its clear the strain that is put upon her, as we continue to strive to meet James’s ever changing needs and aim to keep him within the family home environment. Everywhere we go, James is recognised for all the right and wrong reasons. His severe ADHD makes him stand out – a child so big bouncing around on his tip toes stimming and shrieking is not something you see everyday! I’ve had “Ah the boy with the curly hair”- yes that’s him! For the future, we hope James will be able to participate more in family life and be able to communicate his needs, but for now, we can enjoy all the love and joy he brings to our lives.

James and his mother, Charlotte

Charlotte is a truly wonderful woman and a fabulous mother to both of her beautiful children, as is her husband an awesome father, and I am proud to say I know these amazing people. Thank you Charlotte.

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