Friday, December 11, 2015

Somewhere on the Spectrum. Written by Debra Hughe

Somewhere on the Spectrum

For many years I wanted to tell our story, I never got around to it. You know how it is, life takes over and there are not enough hours in the day. In many ways I wasn’t ready to write it down, I’m not even sure I am now. Nobody likes to read in black and white what has happened, what you have been through. Writing it down make it seem more real even though we live it every day. To be honest I never knew where to start either. There is so much to fit in, it is hard to break it down in to a snippet of who we are and what our daily life is like but I am going to give it a go right here, right now. 

I am married to a wonderful man, Steve. He is my rock through everything we have been through and he will be there for whatever the future holds for us as a family. We have two beautiful boys who are our world, they brighten our lives every single day. They each have their own battles that they face on a daily basis. Between them they have a complex variety of conditions/disabilities. 

Harrison is my eldest, ten years old. He struggled with developmental milestones including fine and gross motor skills and his speech was delayed. At around 18 months old we knew there was something behind all of this but convincing anyone to listen was hard. Our parenting skills were questioned, we were made to feel that we were awful parents, being over protective of our son and over reacting for no reason. We fought long and hard to be listened to, gathering evidence to show what we were seeing at home and eventually by the time he was five years old he was diagnosed Autistic Spectrum Disorder and Tourette’s SyndromeA year later he was to gain another ‘label’ after being diagnosed ADHD also. He struggles socially and needs a fairly rigid routine to get through the day. His behaviour can vary and he can lash out uncontrollably if it’s all too much for him. We think his tics are getting worse and are watching closely as he seems to be developing a swearing tic. I watch him on a daily basis astound me, however there are many struggles which often brings me to tears.  I am now watching him grow (above me lol) into a wonderful young man, with no awareness how cruel this world is and potentially how he may be judged or even bullied for the rest of his life for conditions and disabilities he never asked for.

Aiden is our youngest, he is eight years old. He hit all his milestones as expected. When he was around five years old we struggled to get a sleeping pattern established with him. He was always worried and had to work through things. It was like he had to make sure certain things had been done, that everyone was ok before he could even attempt to sleep. It was a rare occasion that he actually slept well. Aiden was always agitated and anxious, at times he would do things that nobody would expect a five year old to do. I remember we were having a bad morning with his brother, so Aiden went to the kitchen and made his own packed lunch for school because he didn’t want me to be rushed or worry about his lunch because, in turn, this would worry him and make him anxious. Again, it has taken us years to fight to be heard and again our parenting was questioned and we have had awful support. He is now eight and only this year got his diagnosis of ADHD and Anxiety Disorder. I often call Aiden my withering flower, he can start off upbeat but deteriorate so quickly and then stay there for days struggling to get himself back on track.  Aiden makes my heart ache. The not knowing how to help him upsets me the most. I struggle with his anxiety alongside him, but we fight together in the hope that one day he will be able to get a handle on it and learn some coping techniques and not let it get to him in the way it does whilst he is so young. 

Daily life can be a constant battle when you have two boys that are so different with their conditions. It can be both physically and mentally draining. Add to the above that I am now diagnosed as having Fibromyalgia, a condition that is debilitating when even the smallest task needs doing. It has rocked our world with how it affects me every day in both mind and body. There are times I am so overwhelmed by it all, the lack of support in some areas for parents is shocking. We are out there trying to survive, hanging on to the friends and family that understand and help us when they can. We put up with ignorance and bullying from others who think its ok to judge a child for a condition they can’t see. However saying all this and the struggles I and my two boys go through, I am very lucking to have two amazing to boys and I am lucky and honoured to be called their mum. They have a fantastic father who is my absolute rock, my support, my shoulder to cry on. He is the glue holding us all together whilst we battle our own demons as such. 

If after reading my story the only thing you take from it is that Invisible disabilities are so hard to live with, then I am happy that you have taken the time to read this and maybe you could share it on so others can learn that not all disabilities and conditions come with an obvious ‘look’. Next time you see a child doing something that you may think is ‘being naughty or disrespectful’ maybe stop and think perhaps they have a condition or disability you cannot physically see and that in fact they are not in control of themselves and far beyond reasoning withMaybe even attempt to imagine how the parents are feeling living with this every single day, how their heart is breaking because all they want to do is comfort that child and take it all away but they know they never can.

Thank you for reading this. You can follow our crazy, complex but amazing journey at my page, Foggy Spectrum on Facebook. 

The Huge Family

**If you want to be a part of this series and share your story, please email me at grapejellyonpizza@gmail.com for more information and be sure to follow us daily on the GJOP page.

1 comment:

  1. I have read many blogs in the net but have never come across such a well written blog. Good work keep it up
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