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Old May 7th, 2013, 15:55 PM   1
sequeena
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Developmentally Behind Support & Chat


I thought I'd dip my toe into this section, hope you don't mind. My son is still in the middle of having various tests but he has been diagnosed as developmentally behind. Has anyone gone through this with their children? How has the process been for you? Did you get much help and did you find it helped your child? I'm just looking for someone who understands what we are going through. I know no-one who has a child that is 'behind'.

Quick back story;

I had a pre premature rupture of membranes at 14 weeks that resealed at 24 weeks but I suffered with Oligohydramnios throughout my pregnancy. I went overdue, birth was fine no complications. The only 'noteworthy' thing is that my son was born with a 3rd thumb.

At 2 weeks old my son contracted sepsis through a child who had a bacterial infection (did not know at the time). He spent time in hospital, had a lumbar puncture, antibiotics etc but made a quick recovery.

At 15 weeks old he had an operation to remove his thumb and had his first infection, a hand infection.

He's had several infections - chect, eyes, ears, foot etc. He's also had bronchiolitis, norovirus etc. Basically, he gets unwell a lot and goes downhill fast. He's also had a concussion (I was babywearing him and fell over a loose paving stone).

At 5 months old he was referred to a hospital optician because his eyes were turning inwards. This did not bother me as both my OH and I have glasses and eye problems and it runs in the family. At 8/9 months old we were told he had an astigmatism but was not given glasses as eye problems can fix themselves in the first year. At 20 months his astigmatism had corrected itself but he's long sighted so he has glasses.

I've always known he wasn't as fast as other children. He didn't sit until 8 months, crawled at 11.5 months, walked at 17 months and said mum at 18 months. In the grand scheme of things he wasn't massively behind but it did worry me.

As time went on I relaxed and put it down to children developing at their own pace. Then I had a new health visitor who changed it all. She was worried that he was very behind and referred him here there and everywhere. I was annoyed but went along with it because it wouldn't hurt him.

First he saw a developmental specialist. she watched him play, asked him to do various exercises and told us that he was behind in everything, severely behind in speech and she would need to see him again. She also referred him for a physical exam, a hearing test (he wasn't responding well when she did something with his right ear) and she is arranging a pre school disability teacher to come to our home once a week to work with him.

Last week he had his first speech therapy appointment. It was a group session with 4 other children/parents. They said Thomas is a happy outgoing child but is very behind and they'll be interested to know what happens with his other tests. Even if he's not diagnosed with a condition they said he will need speech therapy in the future.

Whilst I was discussing this with my aunt she told me that my father is registered as disabled (cannot read and write) and my cousin has problems with reading and writing and cannot hear high frequency noises. I did not know any of this when I saw the specialist so I'll have to update her when I see her next.

I admit I'm feeling a little overwhelmed as I was not expecting this outcome. I thought we'd go and they'd say oh he's fine he's still young yet but that wasn't the case. I am not extremely worried about Thomas as I know he's a clever child who hasn't been fazed by what life has thrown at him but I am a bit worried about the future. One step at a time I suppose.

This thread started out as somewhere for me to get advice but it's evolved. Now it's a group for anyone to get support and advice and to also chat about whatever is going on in our lives. If you have a delayed child you're more than welcome to join

Our 'members'
sequeena - Thomas is 2 years old, has Global Developmental Delay, Glue Ear, a hypoplastic thumb and hypermobility syndrome. Thumb op 22/10/2013. WTT #2

bumpin2012 - Gabriel is 1 with undiagnosed delay and mama is pregnant with #2! our first !

essie0828 - Hayley is 18 months and has Global Developmental Delay and Diplegic Cerebral Palsy. NTNP#2

RachA - Esther is 3 with a severe speech delay

AtomicPink - Alex is 4, ASD, developmental delay and non verbal. Tori is 2 and has speech and gross motor skills delay

Tiff - Claire is turning 5 in December, she's diagnosed with Autism Spectrum Disorder. She has developmental delays with fine/gross motor skills, and is a flight risk



 
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Old May 8th, 2013, 08:45 AM   2
Tiff
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Aww hun, first and foremost massive massive hugs. Its so hard to to through the tests and watch them score your child and then hurts even more when they score below.

Claire was flagged at 2 years for delayed speech, at the time we didn't think anything of it. I knew lots of kids growing up that needed speech therapy and as adults are perfectly fine now. It was also something that they never got teased for either - if anything the rest of us were jealous that they got to leave the class to go for speech whereas we had to stay and do work.

With Claire, she's developmentally behind with I think is caused by her Autism. She has the fine/gross motor skills of a 2.5 year old, and she's 4.5. She can't ride a bike (although we're working on that), cannot hold a pen/pencil properly, and while she sees things and understand them she doesn't possess enough to be able to verbalize what she sees.

She just recently had an OT/SLP assessment and scored in the 9th percentile (well below average). Its so hard to watch IRL or read about friends on here and the incredible things their kiddos are doing and know that she is nowhere near that. I'm sure it'll come in time... but still. Its hard!

Honestly, when this all started out I thought the same... she'd be diagnosed as speech delayed, we'd get therapy and she'd be on her way. But then with each test came more questions about Autism and here we are. Not saying that your little guy IS autistic, sorry! I don't want to add to fears and stress... just that I have been there and 100% understand how much it sucks and how hard it is as a parent to sit through.



 
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Old May 8th, 2013, 10:08 AM   3
sequeena
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Thanks for replying Tiff

I'm glad to hear your experience though I admit I've stayed away from autism. I think I'd panic myself if I started googling

And yes you're right it's hard to hear what other children his age are doing

Thomas' development is at the stage of a 1 year old right now, which was hard to swallow but I'm hopeful he'll catch up very soon!!



 
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Old May 8th, 2013, 10:26 AM   4
nicki01
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Hi! I seen you replied to my post on a similar subject!
We haven't had any tests or anything done yet as we are still waiting for referrals so I'm not sure where Charlie is at right now but I know she is quite behind!
Just popping in to say i know how you feel, I'm nervous about all this already and I'm none the wiser with Charlie at the mo!
A lot of people keep telling me to stop worrying so much and enjoy my LO for who she is and not to get to wrapped up in all this!
I know they are right but its hard not to worry about the future!



 
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Old May 8th, 2013, 10:28 AM   5
Tiff
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Quote:
Originally Posted by nicki01 View Post
Hi! I seen you replied to my post on a similar subject!
We haven't had any tests or anything done yet as we are still waiting for referrals so I'm not sure where Charlie is at right now but I know she is quite behind!
Just popping in to say i know how you feel, I'm nervous about all this already and I'm none the wiser with Charlie at the mo!
A lot of people keep telling me to stop worrying so much and enjoy my LO for who she is and not to get to wrapped up in all this!
I know they are right but its hard not to worry about the future!
I find it so unfair when people say that. Obviously I do (and did!) enjoy my kiddo but at the same time you are completely right! Its worrying for the future and knowing how difficult life can be in general without added hurdles for them to cross.



 
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Old May 8th, 2013, 10:34 AM   6
sequeena
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I've been told that too and I bet they'd be the same if they were in our position. Doesn't mean I don't love Thomas as he is I just want answers and help for him.

Good luck with Charlie x Thomas gets pushed through quickly because of his past. Though today we were told the hearing test is a 1 year waiting list!! So his paediatrician is going to bump him up the list x



 
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Old May 8th, 2013, 19:47 PM   7
mummy3
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You've had a time of it Thomas is very cute!

2 of my 4 (so far, 24+5 weeks pregnant atm so nearly 5 kids) have development delay. My 5 year old son has autism and global delay, he's in a special ed preschool and in august goes to an ASD kindergarten with an aide. He has a severe pragmatic speech delay as well as motor skills all at least 2 years behind so gets OT and speech weekly. My 26m old has a provisional dx of rett syndrome and has lost the speech she gained and at her 2 year assesment had expressive language age of 6m, she also has regressing motor skills. She has a speech, OT and infant teacher come to the house every week.

It can be very overwhelming, all I can say is take it day by day and step by step



 
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Old May 9th, 2013, 04:26 AM   8
sequeena
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Wow mummy3 you've been through a lot. I'm glad your kids are getting the support they deserve x do you know if their conditions are one of those things or possibly genetic? x



 
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Old May 9th, 2013, 04:28 AM   9
sequeena
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Well I made the leap and joined a special needs group on facebook (based in my area). The people are lovely, they meet up once a week and even offered to pick me and my son up to go to their group.



 
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Old May 9th, 2013, 21:54 PM   10
mummy3
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We did think at first they would be connected but it seems not so just one of those things. My daughter is much more affected than my son in alot of ways. Getting the right help and as early as possible is invaluble as is meeting with other parents who are there or have been there, the Fb support group will be such a good thing



 
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