Hi I’m Laura and a single mum to Ronan who has a disability known as Global Developmental Delay (GDD). Ronan is 4 years old and his GDD has put him 2 years behind with his development. Ronan still cant talk like other 4 year olds, his speech is that of an 18 month old. Everything else is at two years old. September 2012 he starts primary school full time. Am I dreading it? Yes I am.
Ronan is still not potty trained so I have that to tackle over the summer holidays, which means days out are limited unless I can have quick and close access to a toilet. Not that Ronan can tell me he needs a wee or a poop until its too late. I try not to let it affect me but it does. I cant really invite people over whilst potty training as right now Ronan is running around in nothing but a t-shirt to get him used to using the potty. I find it hard to go to friends houses as I dont want to put a nappy on him and take a few steps backwards. I find it hard with Ronan not being able to tell me when he needs to go the toilet.
Living With Global Developmental Delay (GDD)
Its also hard when Ronan’s not well as he cant tell me whats wrong, where it hurts, if hes tired, what he wants or needs and why hes frustrated. Its also hard as other parents and their children dont know or understand why Ronan is the way he is, they dont understand why Ronan doesn’t talk to them or why he wont play with them and then the questions start, why wont Ronan play? Why wont Ronan talk? But why? Does Ronan not like me? WHY? WHY? whhhhhhhyyyyyy? Yes I do get sick of explaining exactly what is wrong with him every single time parents or children ask me why.
What is GDD? For Ronan and I its on hell of a battle to over come. There are a few factors that can cause it from genetic factors such as Fragile X Syndrome, Downs Syndrome to structural abnormalities like Spina Bifida and Cerebal Palsy. There are also other things like meningitis, being born too early and rubella that can also cause it. Although there’s always a few cases like Ronan’s that go unanswered and there is no known cause. but there is signs parents can be on the look out for that can point towards their child having GDD (link included)
Although doctors and myself cant treat Ronan’s GDD, we have ways to help him catch up even though there’s a chance he may never fully catch up we can still get him at least with in 12 months of what he should be. Currently we are awaiting test for ADHD as Ronan’s attention is almost none existent I can grab his attention for about 10 mins before he is off again doing something else.
We don’t get much support, I haven’t seen my HV since Ronan was 3 so its been 18 months since she was last bothered to ask if we need help. Doctors and Pediatricians we see every 3/4 months, we dont have speech and language therapists last time we saw one Ronan was 2 and a half. In the short 5 months he was at his second nursery they tried to help but as they said it takes months to get people like portage and pediatricians to help out so it has been left to school to get Ronan statemented and get him a SENCO, one-to-one help as well as small group help at school to help him to talk and play with other children his own age. So fingers crossed he gets the help he needs to progress and he wont need to go to a special need school.
The health professionals we have dealt with haven’t really been much help as none of them could really tell me what to expect from GDD, what it was and how it would affect us in day-to-day life. All research I have done to try explain whats wrong with Ronan has been done online. I have shown friends page after page of what it is Ronan has got. Its like no one has a clue what GDD is and if I am totally honest, even I have no idea what it is not really, but do any of us fully understand everything? In the last two years I have relied on Facebook, Google and books to help me understand it all.
Also to help me understand what to expect. I dont know if this will affect any other children I have, but its a 50/50 shot at it. I know one other parent who is going through the same as me but with 2 children who are 5 and 3. GDD mostly affects boys more than girls but girls have been known to have it. So yes its put me off having more kids at the minute but not completely maybe in a few years I will give Ronan a brother or sister, I just need to get Ronan sorted and hopefully up to where he should be or as close as possible
As a mum it makes me feel as if I have failed my son. I feel I could have done something to prevent it, although its purely by chance a child getting any disability. So for other mums out there who’s child has GDD please dont feel as if you are alone, you can add me on Facebook Laura LaLa Matley or just message me. Please dont feel as if you have to do it alone like I have done.
There is always some one to talk to, swap help, tips and advice with. I only wish I had found others to talk to in my area about this but I dont. I have even phoned sure start and social services to ask for their help like parenting courses and groups I can attend. I hope I can help just one other mum going through the same as me. Feel free to ask me anything anytime and I will answer the best I can.
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