Bruiser is our beautiful 3yr old son and little brother to Wriggler (age 7). He has the most gorgeous auburn hair and hazel brown eyes. He loves playing with toy cars and rockets in fact most transport vehicles. He is one very happy cheeky little chappy but he also knows his own mind too and this comes across in stubborness. From the outside he appears perfectly normal.
In a nutshell, Bruiser was born 10 weeks early after suffering a near fatal feto-maternal haemorrhage in the womb. He was starved of oxygen during this time and also suffered bleeds on the brain. He did eventually survive the fight for life but we were left with the devastating news that because of the oxygen starvation and bleeds on his brain, he would more than likely be mentally retarded or suffer with cerebral palsy. He would never walk or talk or go to school and would require round the clock care. Bruiser stunned us and his consultants with his development though and to date we have no such diagnosis. However, he does have other difficulties. Ones we weren’t expecting or even remotely prepared for.
We don’t have a diagnosis at this stage but he is currently been screened for Autism. He has a lot of other difficulties too… delayed development, a severe speech and language disorder, social communication and interaction difficulties, sensory processing disorder, sleep disorder and eating difficulties. Up to a year ago, he was non verbal and even now still has a very limited vocabulary but his talking is coming. He uses Makaton as his primary method of communication, this was in fact his first language! and I have to say, he is a terrific little signer and can boast over 500 signs to his ‘signabulory‘.
From the outside it looks like we just get on with it, which we do we have to. But, I don’t think outside people quite grasp the enormity of the struggle it can be sometimes. Dont get me wrong bringing up children is hard bloody work at the best of times for everyone. But for us life predominantly revolves around Bruiser and his difficulties. It shouldnt, but it does. It has to be planned around him, planned five steps ahead of him all of the time. We have to prepare him for everything even every day things like bedtime, bathtime, mealtimes. There is no spontaneity. A simple trip to the shops can result in full on meltdowns because we pick up more than the loaf of bread we told him we were going for.
Dont even get me started on the people who stare and pass judgement at our apparent inability to control our child and total lack of parenting capability when Bruiser is having a moment.
Id like to say we have a support network of people, family around us to help us out but, unfortunately we don’t. Me and Hubby do this all by ourselves, 24/7, 365 days a year. We’ve never had a day or night off! Life for us is very emotionally and physically draining, including big brother Wriggler who I feel like I have neglected over the last couple of years. So much attention and focus is on Bruiser that he doesn’t always get what he needs from me and his Daddy. Quality time is what he craves and it’s so difficult sometimes. He gets dragged around with us to Bruisers regular appointments, therapy sessions and meetings. Even something as simple as listening to him read his school book at night is an impossibility some days. He has recently started attending his own groups though to help him better understand Bruisers difficulties. He attends a Sibling Support Group run by Barnardos. He has loved going to this and meeting new friends who have siblings with similar difficulties. He’s learnt loads and although he has always been brilliant where his brother is concerned and never complained about anything ever, he is now even more caring and understanding with Bruiser when they play. He helps him so much. He gets him talking and copying his imaginative play. A lot of credit for Bruisers recent explosion of development can be given Wriggler. He is an amazing big brother and they have a wonderful relationship.
It is our experience as a family of a child with additional and special needs that I am supporting the Mumsnet ‘This is My Child‘ Campaign for children with all difficulties. The aim of the campaign is support the parents of children with additional needs and to inform others by busting the unhelpful myths about special needs.
This campaign needs everyone’s support so please contribute where you can and join the online forums, blog about it, tweet, goggle+ and facebook your support. It all helps to make a difference. If just one person did this after reading our story we would be forever thankful.