Anyone out there with a child with development delay

[janda]

Hi my son has development delay, he is 2 years 8 months. he had all the services introduced to him when he was 14 months. has anyone going through this at all. He still has not got a diognosis for his delay. It has been very hard going with all the appointments, but he is so loveable. His speech is delayed and his walking. If you are going through the same as me please leave me a message as it would be nice to relate to someone who understands. Look forward to hearing from you soon.

My child has some developmental delay janda but unlike your ds we have a diagnosis. My dd has down syndrome and we are still to learn how delayed her development will be. She is just 8 months. It is very hard attending lots of appointments - dd also has a serious heart defect which required two lots of open heart surgery at 2 months so I can sympathise a little with appointments. We have regular medical check ups as well as hearing and sight tests. We also attend a playgroup for babies with down syndrome once a month. At this stage she is attempting to do some sort of crawling but is still no where near sitting unaided or looking like standing.

It is hard going trooping off to see this person and that person and sometimes feeling like you wasted your time but they make it all worthwhile - my little dd is so cheeky and gorgeous and essentially a 'good' baby.

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my dd aged 2 yrs 7 months has developmental delay that was diagnosed as cerebral palsy the week before Xmas. I know exactly what you mean about appointements etc it can start to get you down and losing the plot about being a "normal" Mum but in imo only you know your ds the best and it's only you that will fight for his rights to ensure he gets everything he deserves....keep at it you will eventually get to the bottom of your ds little problems and eventually build up a rapport with some of the specialists helping you....but remember your ds is a child first and a child with problems second....take care I feel that I was in this situation a few months ago

I'm on my 2nd child with dd. Oldest aged 11 was born with hydrocephalus and 2 heart defects, and was delayed with her gross motor. She has overcome all of these now and is like every other pre teen. Youngest aged 2 has cerebral palsy and is delayed in his gross motor, can't sit unsupported or unsupervised, can't stand or walk. Can commando crawl though, and is trying to crawl on all fours, but ends up doing a sort of bunny hop then giving up! There are quite a few people here with special needs children, you should find plenty of shoulders should you need them .

Hi janda, my dd2 aged nearly 2 has global dev delay. She hasn't got a specific diagnosis either, but they have pinned it down to something genetic (she has microcephaly - small head - and they are now testing for two syndromes, Retts and Angelmans), however I don't know that a diagnosis would make that much difference. She can sit unsupported, but not roll, crawl or walk. She has only about 3 words.

I really understand about all the appointments, they are never ending, but hopefully worth it. Dd is a very loveable child too and brings a smile to most days. Take care and chat here whenever you need, it's certainly helped me.

My 3 and a half year old is autistic- so delayed in lots of areas- speech, language and motor skills (especially fine- gross is mainly OK although he can't do a few weird things like lie down on his back from standing).

A diagnosis can help with some things- statementing etc but it may also hinder. So for example because we have an autism dx the pros all seem to think he needs help with wanting to commuicate- in fact he initaites communication well, and tries very hard to communicate- unfortunatley he has a speech problem (and language) so can't. But trying to get the so called pros to understand that is a bit of an uphill struggle. So no diagnosis does at least mean the children aren't pigeonholed.

And I hate the appointments- one last week, one this week blurrrgghhh

Thank you ever so much for getting back to me. I only found this board today (sunday) and what an amazing responce. I feel i have found the right board for support and advice after a long while searching. I hope to get to know you and offer my support where possible. Thank you.

My ds2 has severe developmental delay also.He is nearly 6yo. His hypothalamus is not working properly and we have no diagnosis.He cant walk, talk but he has sat unsupported since he was 10mo.Even though he has special needs I try and treat him like all the other children. But I must confess he gets more spoilt and attention from me and dp.You will find that the appts will calm down.You will also find that in time the professionals will take advice off you as you know your child better than anyone.Special needs children are so lovable. I find the hardest times are Xmas and birthdays.Instead of bikes etc he is getting lights and bubble columns.Take care.

Our younger son (4) has Downs Syndrome and development delays across the board - particularly speech and walking. However, we've always been determined to see what he can do rather than what he can't and put lots of effort into finding out what help is available from various agencies. It takes a long time to winkle it all out, but there is a lot of help out there.

Our main life saver was the portage scheme, available in most areas. You can either self refer or get your GP/paediatician to do it for you. Their web site is www.portage.org.uk

He's now 4 and despite not talking and all sorts of other delays, he goes to the local playgroup where he's just started getting a support assistant for some of the time and is starting at the local school in September with additional funding for his extra needs through a Statement.

The extra help has been great, but what has really suprised me is how accepting people are. Many people don't know what Downs Syndrome is (people still ask me if their children might catch it!), but are still positive. I've decided that if people don't know what to say/think/do, they just follow your lead so if you are positive, they are too.

Life with a child with developmental delays is not always easy, but the good times far outway the bad ones and we wouldn't change him for the world.

Two of my three have delays. DS, 5, was delayed in speech, gross and fine motor skills, learning. He has Cerebral Palsy, and he is still delayed in fine motor skills. But he has generally caught up with his peers, he can count to 100!!!!
DD1 also has CP, and has overall delays. We have been told that she will always need help. The new consulant that we have seen has re-ordered her MRI scan as she feels that more than CP is causing her problems.

Mieow, has the consultant said what else it could be?

hydrocephalus

Hi and thanks for all the responce what a brilliant support board this is. Here is some more about my son. He is having portage but they are having to withdraw there service this coming easter as they said to me more children are in need of this service and my son is doing so well. He was having pysio but they are are also withdrawing there service in may as my son had taken his first steps, and i have been reffered to the local hospital for management of his boots and insoles. We are still seeing the ot and also the speech and language therepists. My son is due to start intergrated nursery in september as he is still delayed in all areas. My health visitor has been seeing us regular for support. I saw my sons peadiatrition early march and i was half expecting a diognosis, but was not able to give one. My son has had many tests done including a mr scan, eeg, blood tests, and i am waiting on his x-ray results done on his hips to investigate his wide gaite walk. My son also has a condition called duanes syndrome ( squint ) and he had both his eyes operated on in april 2002 and still goes to the eye hospital for regular checks. I know i am no nearer to getting a diognosis. But one thing i will always say is my son is my son and i will always love him no matter what. Can i thank you once again for your support. Take care all.

Mieow my oldest had that, if there is anything I can answer for you feel free to ask. Thinking of you.

Janda you seem to have a very positive outlook , which always helps! I know exactly what you mean, I can't imagine my son being anything but how he is, or him being with any other family. He was made to be with me and vice versa.

Hi all - haven't posted for such a long time. My ds has global developemntal delay - grand term for a no diagnosis. Advice is - hang on in there.
Appointments do help - you always think of the questions when you walk out the door - so write them as you think of them and ask the next person. Every little helps. ds walked at 22 months and did not talk clearly until 4 yrs. Still struggling with speech therapy and he is now 10! Keep going - keep asking - keep believing and keep telling them that they can do anything they want to!

Thanks Lou33, She has been check for it before but the new consulant wants it to be repeated. I am not going to think about it till after her scan

Good luck Mieow, you know where I am if you want me.