Worried and upset

teabag29

my baby boy is 19 months old. He was born by c-section and spent 5 days on cpap due to water on his lungs from the birth, he then had prolonged jaundice for around 10 weeks.

From around 4 months ive been worried about his development. He wasn't really babbling at the same rate as other children, wasn't interested in toys etc and would just sit happily. the only thing that he really seemed to enjoy was music (either on the radio or if i sing to him) and lights, he'd happily sit and watch lights for hours if you'd let him.

As he got older i began to worry about episodes he would have which seemed like seizures, he would roll his eyes back and fourth like he had no control over it then he would go vacant like he was staring through you and then he would scream as though in pain. These episodes usually followed from sleep or when he was tired and due a sleep. He had an eeg but came back clear, they stopped for a while but come back every so often.

Fast forward to last week when he was finally seen by a pediatrician and hes been diagnosed with global development delay. She says he will need support when he starts school and has written to the early years educational intervention at the nursery near us for when he starts to say he will need extra support. She has also arranged for him to start physio and speech and language. She wrote a report which says hes functioning at around 9-10 months old and although very passive is quite social so it doesnt look like autism. Shes arranged for a blood test to check for genetic disorders which she thinks will be clear and also an eye test and hearing test. On the letter to the opthamologist she says he is well below the 1st centile for his development.

He is 19 months and will only drink from his bottle, he refuses a cup and cries and doesn't seem to be able to hold it properly or want it. He can eat finger foods but cant use a spoon, he cant crawl or walk but bum shuffles, he started sitting up at 1 and recently learnt how to roll. He could say mum dad nanny and hi but he seems to not be able to say nanny anymore despite us saying it to him everyday and trying to teach him new words, mostly he just says dad and yi (thats his word for hi) which he will wave to when he says it.

Hes such a good little boy, very content and always smiling. My heart is breaking for him, i don't want him to be different. Whatever happens to him I will always love him as much as I do now but I want him to have the same chances in life as everybody else, i don't want him to struggle or be taken the mick out of or to struggle to keep up and have to fight for everything in life especially with the funding for support in schools now at an all time low. I just want the best for him and as I look at him and his little happy face I cant help thinking of what his future holds. Its the not knowing is the hard part. I'm probably sounding very selfish but I just don't want him to struggle, life is hard enough now a days and I worry about how he will cope if he doesn't/can't catch up

Tigsteroonie

Grieving for the child you thought you would have, is part of the natural process, so don't beat yourself up about that

This blog post might be of interest: http://themighty.com/2015/04/the-unique-grief-of-special-needs-parents/

Could I also encourage you to read some of the threads, and look for support, on the Netmums' Special Needs board: http://www.netmums.com/coffeehouse/advice-support-40/special-needs-disabilities-support-502/

It's not the end of the world. It might look that way now, but you will get through this. Honest.

pigpen

He won't 'catch up' .. I was led to believe they can overcome a delay.. but they can't I was lied to. However, this doesn't mean he won't ever live independently or work or achieve great things!

Push right now for support.. He will need support throughout school so you may as well start that support now to get him to the best place possible for him to be his truly amazing self.

Grieving for the child you thought you were getting is natural, letting go of those dreams and hopes you had for him is necessary and you are facing that right now. You have a new child, with a new future with new challenges and you are his advocate and protector against the world.

Saying words and then not using them for a while is normal.. language develops in clusters so they may say nothing new for weeks then say 10 new words all at once.. get a SALT referral.. they can take a while to come through. at that age 2 of my boys didn't say a single word. My now 20 y/o didn't say his first word until he was 3.5.. he just made du-da-dan-don sounds.. He had hearing loss due to glue ear as well as severe dyspraxia which caused speech problems.

He will do great things and he will achieve more than you are told.. they give you 'worst case scenarios' so you aren't disappointed but most will excel their diagnosis with love and support.

Look for support groups in your area they are often a good place to source info regarding outside help and support and knowing you are not alone makes it easier to bear.. It really isn't the end of the world, it is the beginning of a new one.

Huge hugs, you will get through this.. x

Kaye1

My LO was born two months early, on CPAP and resuscitated many times.

For the first year of her life, she would stop breathing at any moment until she 'grew out' of that. She was literally silent until she was 2 years old. She had hydro-therapy because the one side of her body wasn't moving correctly. She had physiotherapy because her balance was so shocking.

The speech therapist assessed her at 2.5 years old and she had 7 words.

She is now 9 and is near the top of her class and the only thing you could say about her is she is tiny.

There are lots of things you can do and things don't always turn out the way the doctors think.

She had lots (lots) of hydrotherapy. This really helped. At the age of three, we sent her to ballet. It was incredible. Her balance improved massively and she stopped falling over all the time. She loved it- just the joy of movement.

We turned off the TV and we talked to her all the time. We learned 'Makaton,' to help her communicate- it meant she wasn't so frustrated about saying what she wanted.

I interacted with her all the time, even if she didn't respond. Colouring, painting, blocks, play-doh etc. It is a strange thing with a silent child but anything to maintain interaction.

I won't say it wasn't difficult, it bl**dy was. I would weep inside when I would see all the 'healthy' children running around the playgrounds. I was still buying clothes for 2-3 year old when she started school.

The doctors tell you what they think. And to be fair, ours were brilliant. I suppose my point is, it is quite natural to want everything to be ok. Don't beat yourself up about it. But it may not happen the way they think.

I wish you all the very best of luck.

DevilsAdvocate1

Just on the speech thing - this could be normal. I've three boys and two of them were not speaking at that age. My eldest spoke for the first time just after his second birthday, when he spoke a whole sentence.

merlin68

My dd is nearly 18 with global development delay and moderate learning disabilities.
Since shes been doing a life skills course at college she has really caught up.
Obviously shes not a normal 17 year old, but shes better than what we were told.
Her communication skills are very basic and shes hard to understand.
She cant budget money or tell the time.
She can get the bus to college though and cook with supervision.

AnnieO1234

You know what? It takes all sorts to make the world go around. Your child is still your beloved son. You will continue to support him and provide for his needs irrespective of what that support entails.

Children grow at different rates. Communication, mobility it will come in time. For some that may mean sign language and a wheel chair (at an extreme of course) but so what? It doesn't change a thing, you still love him and he still loves you and that really is all that matters.

Far too much emphasis is applied today to pigeon holes, judged by centiles, tests and averages. Don't let people pressure you, just keep doing what you're doing, and get the help and assistance you decide on.

Xxx

SingleSue

teabag29 wrote: »

Hes such a good little boy, very content and always smiling. My heart is breaking for him, i don't want him to be different. Whatever happens to him I will always love him as much as I do now but I want him to have the same chances in life as everybody else, i don't want him to struggle or be taken the mick out of or to struggle to keep up and have to fight for everything in life especially with the funding for support in schools now at an all time low. I just want the best for him and as I look at him and his little happy face I cant help thinking of what his future holds. Its the not knowing is the hard part. I'm probably sounding very selfish but I just don't want him to struggle, life is hard enough now a days and I worry about how he will cope if he doesn't/can't catch up

Initially it was thought youngest had a global delay as he wasn't walking or talking (he finally started walking of a sorts at 20 months old - it was discovered he had very hypermobile ankles which made it difficult for him, talking came at well over 5) but as it turned out, that was not his issue so can't really comment on outcomes, I so remember the feelings though.

The bit I wanted to comment on was the bit I have quoted. Both youngest and middle have disabilities and I too worried about bullying or people being less than kind but I have on the whole, found completely the opposite.

At high school and now at college, youngest's friends are fiercely protective of him and will guide him and 'look after' him. One occasion at high school was the start of the exams, he was like a little boy lost as he didn't know where to go and as one, his friends came over, pretended to be lost themselves (he is very conscious of his differences and hates it being noticed/mentioned) and helped him to the right room, all whilst making him feel comfortable and one of the group....they were really like mother hens with him that day, even the boys!

If he finds himself unable to speak (he struggles with talking to people, especially those he doesn't know), they will cover for him, give him prompts or again, pretend they are having issues too (not in a pee take way but in a supportive way), so that he doesn't feel quite so odd or different to others. An example of this was collecting his results last August, he was asked his name, he was completely unable to say his name and his friends piped up "Oh Fred Bloggs (obviously not his real name, they said the proper one on the day), fancy forgetting your name especially when you have it on your student ID"

That was enough for him to firstly laugh and secondly, proffer his student ID to the person holding his results and a situation that could have gone very eeek for him, to resolve in a light hearted way.

It has been a similar thing with middle son and that is continuing in university. They have realised he is not great socially, is quite vulnerable to being taken advantage of and on nights out, form a protective ring around him to ensure it doesn't happen and that he gets home safely. They will also go for a chat when he is cooking just to make sure he remembers to turn everything off/remembers he is cooking in the first place but in a way that it seems natural and not checking up on what he is doing.

Yes, there will always be the unkind people but my experience is that we can under estimate just how intuitive, understanding and kind their peers can be too.