How do you cope when your DC is classed as "developmentally delayed"?????

[WavesTheWhiteFlag]

My DS is nearly 6 mths now but from the word go hes been seeing all sorts of docs and had numerous tests. He has problems with his muscle tone and hasnt reached the development milestones of my fellow NCT mums babies. He cant sit at all, has great difficulty holding his head up etc etc...

The thing is I am still struggling to come to terms with it. He doesnt appear disbaled to most people but I can see the differences in him and other babies so much more now and its breaking my heart to think there is something wrong, but we dont know what. So far everything has been ruled out which makes it all the harder.

I just dont know what to do with him most days, he cant play like the other babies. Its like having a newborn some days even though hes the size of a normal 6 mth baby boy!

Maybe there are some mums out there who have experienced the same, I feel so alone in all this.

Hello Waves - my DD2 is now 5.9 but has a genetic disorder that causes (amongst other things) muscle weakness and developmental delay. She couldn't hold her head up for months and didn't sit until 1. I understand how lonely you feel. You feel like you're the only one with a baby that isn't developing 'normally'.

Have you asked your HV if there are any special needs baby groups? I went to one at a local centre and found it a brilliant support, being with people that understood and I didn't have to explain my baby to.

Also, even with no diagnosis you can be referred for Portage; this is a play based therapy to help your child's development. Do you see any doctors or physios, or have a supportive HV? Any one of them can refer your son.

If it's not too scary, come and post on the special needs board, everyone is lovely and very supportive and can share your difficulties.

I agree the SN board is great - I didn't realise how serious DS1's problems were til around 20 months but there is no age when it is the right time to know but being around others who understand is the best therapy.

Hi Ive posted on the SN board before, but havent had much response. I kind of feel a bit daft on there, guess he just doesnt fit into any of the diagnosis groups.

I havent heard of Portage before sounds really good. My HV is great and we see a fantastic physiotherapist once a fortnight. I have been given details of groups that meet at the sure start centre but the kids are a lot older, more like pre school and older. So I feel out of place going. My friends are fantastic and dont treat him any different but I havent had a chance to meet any other mums withs kids of similar problems, they tend to have kiddies with more serious problems.

Sidge - how did they find the genetic disorder if you dont mind me asking. We had a chromosome test but that came back negative as well. Docs just keep saying that we might never have a disgnosis which doesnt help at all.

Hi WavesTheWhiteFlag,
I really empathise as it is difficult coping with the 'difference' when it becomes more apparent. We knew my dd would have physical difficulties after her birth but still doesn't make it easy going along to mother and baby groups and feeling alone.
My dd is 30 months now and has no dx but also has muscle tone issues which have affected her development. We know that she will never be a ballerina (!) but hope that she will learn to cope with most things in her own way.

I'm hoping you have physio and all the support that is available to help with your ds. My dd couldn't sit at all at 6 months but with lots of practice she was sitting ok by 9 months. We found using a Bumbo seat for short periods each day helped with her head control if your ds could manage in one of those?

Hi wtwf,also have a dd with dev delay who is 4 but dev 18-2.

Very hard at times but she is a wonderful little girl despite her problems.

I second posting in the SN section as there are many supportive people on there who have similar experiences.

Regards to you and your dd

Hi, not sure if this helps but when I was a baby I had something 'wrong' with me that affected my muscle development & tone (sorry can't remember the name!) and I couldn't even hold my head up myself until 9 months old and my parents were told that I would probably be affected both developmentally physically & mentally. They took a chance anyway (they were adopting me) and hey lo and behold I was fine and I now even have a BSc and a Doctorate under my belt and am absolutely fine physically

I hope all is well with your DS and the tests are helping, I just wanted to give you some hope x

Waves my daughter has Prader-Willi Syndrome. It's a really rare genetic disorder; she was only tested for it after advice by a consultant neurologist who had seen babies with it before.

It doesn't 'show up' on regular chromosome testing, you have to go looking for it (IYKWIM).

Have a look here to find out a bit more about Portage. It's never too early to be referred, especially as most areas have a waiting list.

Whereabouts are you? (understand if you don't want to say) Maybe some Mumsnetters may know of local groups, or want to meet up?

My ds is 9 months and has mild developmental delay. He can't sit yet but he can roll over and looks like he is trying to crawl. He is very small and generally like a 5 month old baby. I am starting to get comments now about him not being able to do things and him being tiny and being in a flat pram rather than a pushchair. He was oxygen deprived at birth but it doesn't look like he has cp. Some days I think he will catch up with the others and other days I think that if he is like a baby half his age, will he be like a 3yo when he is 5. His pead doesn't seem to know what to think of him. He has been refered for physio but hasn't got an appointment yet. I know what you mean about being in between nt children and sn children. I feel that my ds is neither nt or sn.

I'm not sure if its the same issue, but our dd was diagnosed with congenital hypotonia at around 16/17 months. She was barely sitting by around 12 months and showing no signs of crawling, pulling up etc by approx 15 months which is when we took her to the GP. He referred her to a specialist, then she was referred on to physio. She did eventually crawl, pull up and walk in the 'normal' sequence, just many months after the average. I would say she is probably still technically 'developmentally delayed' at nearly 4, but its not as obvious as previously i.e. then she was the only toddler not toddling. We have been advised her muscle tone may always be lower than average, but then some people are more athletic than others anyway. She was a good birth weight and met all the other milestones (fine motor, speech etc) so this seemed like a bit of a mystery and was very worrying at the time. Until very recently, I'd never met anyone whose child had a similar issue, which seemed to make it worse.

Wow thanks for all the replies. TurningIntoGranny, my ds has congentital hypotonia as well, so far thats all we know. He has been given a specialist corner seat by our physio to help his core strength and head control, but with another LO in the house I find it so hard to find the time to use it as often as I should. I think a bumbo as mentioned might be easier as the seat takes a bit of setting up otherwise my DD (2.6) would be in it and probably break it!
Sidge Im in the North East, near Newcastle. I havent managed to find any groups yet but am hoping to quiz my HV tomorrow weather permitting.

The hardest thing is thinking that I might have done soemthing when pregnant to make him like this. Maybe I didnt start taking folic acid quick enough, or drank a bit too much. While I was pregnant my baby seemed to get these really strange spasms, my bump would shake quite a lot. I mentioned it to my MW but she totally blanked me. Now I cant help thinking this was a sign, when he was born and for the first few months his arms and legs would shake violently whenever he was upset. Which was obviously what he was doing on the inside. And obviously wasnt normal. He was born with a club foot, again something that was missed. All his scans were normal. I know its a lot easier to compare him to himself a few weeks ago but its so hard not to compare him to his sister and what she was doing.

Gonna post on SN, but thxs again to you all

I would like to say that dd can now run, jump, climb the stairs and enjoys nursery school. She may never be very sporty but the gap between her and other children her age has narrowed as time has gone on (with the help of physio). It was very difficult around 12-18 months when she was the only child at toddler group who wasn't moving at all (didn't crawl til 18 months) and was sitting awkwardly in the pushchair, however, once she managed to get on her feet (nearly 2 years) slowly the skills improved. I hope this helps a little.