GLOBAL DEVELOPMENTAL DELAY – OUR STORY SO FAR

It’s been 2 months now since I stepped down from my full time role…my dream job…the one thing I’d fought to continue after the birth of my sons, but the question to many was why? Yes parenting is difficult, but everyone goes through that people told me, toughen up it’s life.

Yes, but for me it came down to 3 letters GDD.

I had never heard of GDD (Global Developmental Delay) until that moment sitting in with our paediatrician nearly 6 months ago. We had always known Hunter was developing differently, but being a twin we were careful not to make quick decisions. We followed the advice of our paediatrician and touched based every 6 months just to see how he was going.

It was November last year during out regular 6 monthly check up that the Dr turned to us and said ‘I think we are dealing with more than just a speech delay…Have you heard of Global Developmental Delay?’

Of course we had no idea what he was talking about but the first thing he explained was it’s a complex situation that results in a child experiencing delays of over 6 months in critical developmental areas including fine and/or gross motor skills, comprehension, speech, processing, problem solving and social / cultural situations.

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It was both a shock and a relief. My gut had always known that we were dealing with something but when you have more information to work with then it’s about pulling it together and assessing what needs to be done next.

The most difficult thing with any form of developmental disability I have found is the lack of understanding. The most common comment we face is ‘ahh he’ll get there in his own time, all kids go through this, just give him time…he’s only three’.  But the truth is there is no guarantee he will ever get up to speed and as parents we needed to make a decision to support him as early as we possibly could to help give him the best support.

What happened next was a load of research into exactly what GDD is and how it would impact on his life. Like with anything, the internet is crammed full of information on the most extreme cases and the worst outcomes. We spent hours talking to professionals and getting advice and reaching out to support groups for information. Like many people around Hunter we had difficulty processing it as he can be so perfectly ‘normal’ for so much of the time. But then in very subtle ways he struggles and those struggles are overwhelming for the little guy and that’s what I had to come back to. How did we help him transition through the tough times? And so it was with the heaviest of hearts that I made the toughest yet easiest decision…I stepped down from my full time role to focus on Hunter’s development.

GDD can manifest in so many different ways in each child. For us it is small daily battles. Changes that are out of his control cause monumental melt downs. He suffers from a severe speech delay, with processing and recalling. He can’t tell you what he’s done where he’s been,  he lacks the vocabulary to articulate his needs and struggles to understand some basic concepts.. He is perfectly ‘normal’ when he is in his domain…riding his bike, running freely etc but when something small changes he lacks that ability to adjust. Then there’s the sensory issues – food is limited, he wont eat easily he fusses more than the normal fussy and it can take hours. Issues with water, textures, certain noises and he suffers from severe sleep anxiety. He suffers from exhaustion and a slightly lowered immune system. But he is also the happiest of fellows at time, cheeky, sassy, determined, stubborn, caring, cuddly and a natural born smarty pants like his parents!

I think processing that something is not right on a developmental level with your child is as difficult as a  physical health issue.  In some ways you feel you shouldn’t say anything because it’s not as bad as others may be going through…but at the end of the day if could impact on your childs ability to grow, learn and be happy well then it really means everything.. that’s a reason to change your life for your child.

I remember sitting talking to my Dad saying ‘I don’t want to leave work, I’m scared, I love my work’ and he said ‘what would you do if it was medical not developmental you’d drop everything…well this is the same!’

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Luckily the people I was working with were nothing but overly supportive and while I miss them I can honestly say putting the boys first will be the best decision. I thought about how to push through, keep working, ‘kids adjust, they adapt’ people would tell me…some kids don’t and they require additional support and stability. I have received judgment and criticism but I stand strong in my decision.

The concept that you should let your kids fit in with your life, not change your life for your kids is purely dependent on their personalities and development. Yes these issues did not ‘exist’ when we were younger but that’s not because they didn’t exist it’s because we didn’t know.

Developmental psychology has come forward in leaps and bounds and now we know that early intervention is key. We know that it could be the difference between Hunter having no struggles, minimal struggles or could make no impact but there’s a big chance it will change his future and we owe him the best start to life that’s the least we can do.

So here we are a few months now into managing GDD and this is what I can tell you… it’s a day to day process and some days are perfectly normal and many have their challenges. We work daily on communication, processing and understanding. We have a structure set up around Hunter so when I see red flags in his behaviour I can assess it and remove him and give him his ‘safe space’. We work with OT’s and speech therapists and we are overseen by his Paediatrician. We have built support and stability around him and the change just in a few months is remarkable. He is speaking better than ever, he is more confident and he is moving leaps and bounds in so many areas.

But on this GDD awareness day I ask one thing of you. Don’t ever say to a parent ‘your kid will get there’ because there are no guarantees. Not all kids grow out of behavioural stages and some have deep struggles that require additional support.

Hunter has a super bright future and we intend to make sure he is best braced to face the little and large hurdles that await. It’s our job to arm him with the best coping skills possible, the best communication skills and the best support.

I have no words to describe how much of a fighter he is. He is the hardest working 3 year old I know. Always trying at his speech, trying to learn even when you can see it confuses him and he is completely blessed to have a super side kick who knows him better than anyone, communicates with him and supports him when he needs.

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One Comment Add yours

  1. Thank you for sharing. As a mother of nearly two year old twin boys I have always had a gut feeling that something “is not quiet” right but am faced often with the comment “stop comparing him”, “he’ll catch up”, “he tries so hard”. I too have recently leave from my job to see where the future leads us.

    Liked by 1 person

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