# Global Developmental Delay Awareness Day May 1st 2014



## sequeena

Today is May 1st. It's the first ever Global Developmental Awareness Day. Here is Thomas' story.

We always knew Thomas was a little 'different'. After a traumatic pregnancy and a less than easy start to life how could he not be? He was a beautiful baby, always full of smiles and giggles for him mum and dad. When other babies his age started sitting at 5-6 months (some even 4 months) we didn't panic. He was our first child and we knew it could take a little longer. He did it at 8 months and we were so happy. He crawled 2 weeks before his first birthday. He never commando crawled or crawled backwards. He just upped and went and we were so proud. After he turned 1 year we started noticing he was that bit more different to other children. I worried a lot but told myself that he would be fine and he would catch up when he was ready.

January 2013 at 17 months old Thomas took his first few tentative steps. Within hours he was walking the length of the living room. Within days he was outside. We were shocked that he'd done it so fast but we were ecstatic and boy was Thomas proud of himself! My health visitor completed a 18-24 month check that same month and noted significant delays so referred him to a pediatrician. We were shocked. We knew he was a little behind but surely it wasn't that bad? 

At 20 months Thomas had his first Ruth Griffiths Assessment. A very in-depth developmental test. I wanted to cry during the test. He didn't understand what the pediatrician was saying. He couldn't do what she showed him. It was a long, stressful and upsetting test and she told us that Thomas had something called Global Developmental Delay. What is it? This is the definition of GDD:

A child may be described as having global developmental delay (GDD) if they have not reached two or more milestones in all areas of development (called developmental domains). These areas are:

- motor skills - either gross motor skills like sitting up or rolling over and fine motor skills, for example picking up small objects
- speech and language - which also includes babbling, imitating speech and identifying sounds, as well as understanding what other people are trying to communicate to them
- cognitive skills - the ability to learn new things, process information, organise their thoughts and remember things
- social and emotional skills - interacting with others and development of personal traits and feelings, as well as starting to understanding and respond to the needs and feelings of others.

Thomas, as it turned out was behind in every area of developmental. The developmental ages differed (as opposed to his chronological or true age) but overall he was 12 months behind. We were devastated and blamed ourselves. Did we not do enough with him? Did my pregnancy cause it? Or his start in life? His pediatrician assured us that we'd done nothing wrong. So what did this GDD mean? Would he catch up? We were told he would progress but he would never truly catch up with other children his age. That opened up so many questions and more heartache. Would he ever be able to go mainstream school, have friends, form relationships, live independently, have a family? We can't answer those questions right now but we live in hope that Thomas will be able to do all of these things and more.

GDD is not an official diagnosis. It is an umbrella term. Currently my child is a SWAN child (Syndrome Without A Name). We do not know what is causing his delays. However the RG tests have opened up a new world for us. We found out that Thomas has eye issues - long sightedness, astigmatism and a turn in the eye. He has bilateral conductive hearing loss (and is still undergoing tests to find out how bad it is). He has extreme hypermobility and hypotonia. It's not all bad news. He has some amazing therapists. Physio (and is due to start rebound therapy), a wonderful plastic surgeon and occupational therapist for his thumb (did I mention he was born with 3 thumbs?), Portage and he's just started an Action For Children pre school project where he gets to spend 2 hours every week in a nursery type setting with other children who have problems similar to him. We have just joined SWAN UK which is turning out to be a wealth of support and information and we will be meeting other SWAN children and their families this summer.

We have had tons of terrific support from our friends and family. They have been there for my horrific pregnancy, when Thomas was seriously ill, his surgeries, his other tests. They've been a shoulder to cry on when the responsibility of being a mum to a disabled child has rested heavily on my shoulders. They have sat with me at 3am and given me encouragement when Thomas refused to sleep. They continue to be a source of enouragement and inspiration - some are going through worse than us and still find it in their heart to give. We cannot thank you enough for everything you have done and know you will be there on the next leg of our journey - genetic testing. I don't need to name anyone, you know who you are. And thank you everyone for supporting GDD awareness day in your own special way. It means so much to us.

Thomas is currently 15 months behind in his development but he continues to surprise us every day. He is our beautiful soldier who has been through so much and keeps going with the biggest smile on his face. We love you little man.

https://i798.photobucket.com/albums/yy267/sequeena1/DSCF1088.jpg


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## mummy3

I was just thinking about GDD day When I saw this and also that its Ehlers Danlos awareness month!

So much of what you write is so similar to what goes on in my house. I have type 1 EDS, all 5 have hypermobility and hypotone and 3 of my kids have GDD. 2 of the kids with GDD have autism also. My baby has conditions closely linked with EDS, he has eosinophilic esophagitis which is 8x higher with EDS and he's tube fed which doesnt help with therapies. He was recently found to have hydrocephalus too and is booked for an MRI and neurosurgeon consult and he gets infection after infection.. The same long sightedness and astigmatism too in all 5. 

Early intervention has been an amazing help, the more we can get the word out about these conditions and the massive differences that can be made by assessing and giving therapies earlier, the better:thumbup:

It is so hard, not only to get your child in the right help but to then have to literally be everywhere. I have kids in 2 schools and baby has therapies 5x a week at home :coffee: but it is worth every second. 

It is hard also to know where to access help and assessment, this needs to be changed. 

Good luck with genetic testing, it takes awhile but can give alot of peace and information:hugs: 

Thomas is such a handsome little guy:cloud9::hugs:


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## sequeena

Wow mummy3 you are certainly dealing with a lot, how strong are you!

You are right early intervention is the key. Looking back I wish Thomas' issues had been picked up earlier but it is hard with young babies.

You must be so busy compared to me but it is so worth it xx


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## RachA

Sequeena. Is the SWAN a name you were given or did you find out about that yourself? 

Just wondering because we haven't been given any diagnosis for Esther. She is delayed in all areas but we've not been told it's specifically GDD and they also don't have a clue what is causing the delay. So was wondering if Esther would come under SWAN too?


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## sequeena

RachA said:


> Sequeena. Is the SWAN a name you were given or did you find out about that yourself?
> 
> Just wondering because we haven't been given any diagnosis for Esther. She is delayed in all areas but we've not been told it's specifically GDD and they also don't have a clue what is causing the delay. So was wondering if Esther would come under SWAN too?

Yes she would be a swan too. A lot of GDD parents are in the group xx


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## mummy3

Dont be hard on yourself Sequeena, when its your first you dont have a comparison and theres not often alot of advice and direction out there.

1 or 5 its just busy lol:winkwink: I have alot of help, we have a fulltime nanny:blush:

Do you know what type of EDS Thomas has? Alot of the types come with many different effects, not just on the joints. If not genetics will be a mine of information with this:thumbup:

:hugs: for everyone, I hope today is being kind!! Its been a long morning here and its not even 8am! :argh: At least 3 are in school now!!!


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## sequeena

mummy3 said:


> Dont be hard on yourself Sequeena, when its your first you dont have a comparison and theres not often alot of advice and direction out there.
> 
> 1 or 5 its just busy lol:winkwink: I have alot of help, we have a fulltime nanny:blush:
> 
> Do you know what type of EDS Thomas has? Alot of the types come with many different effects, not just on the joints. If not genetics will be a mine of information with this:thumbup:
> 
> :hugs: for everyone, I hope today is being kind!! Its been a long morning here and its not even 8am! :argh: At least 3 are in school now!!!

That's true, I still think you're supermum (nanny or no nanny ;) ).

Thomas has either Joint hypermobility EDS or just hypermobility EDS. He has issues that come under both (fatigue, pain, chronic diarrhea despite having a wonderful diet and no reflux and more). I have hypermobility in my knees but only discovered it when T was diagnosed. I have suffered for years with them and they keep dislocating but I never thought anything of it.

Bless you I hope the rest of the day is less busy!


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