sequeena
Winging it.
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- Jun 20, 2009
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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.
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
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
Its so hard to to through the tests and watch them score your child and then hurts even more when they score below.
thank you all though the advice has been great xx
