Very worried about ds development (14 months)

[Diddum]

Hi

My DS has epilepsy since birth. Bad seizure control during the Summer. Better now but he still has a seizure every few weeks or if he is sick. At our recent appointment with the neurologist he said he is worried that DS might have development delay. he wants him to be assessed by a physio over a number of different sessions to form a proper opinion. he said that if he does have development delay he hopes it will be mild. i did alraedy have some concerns before the appointment but hoped I was being paranoid and that things would improve - some friends keep telling me there's nothing wrong but I have been worried for a while now.

DS is almost 14 months.
He sat unsupported badly at 9 months (could just fall over after a ittle while) and very well since about 10.5 months. He pulled up for the first time at 12 months. He commando crawls backwards since about 12.5 months and crawls backwards now. Doesn't crawl forwards. Can get from tummy to sitting and sitting to tummy. Neurologists thinks he may still lack tone generally.

He answers to his name since about 1 year old. bables ma ma and bab ba loads. but indiscrimitely. Likes singing and peekaboo and playing round and round the garden. Does not clap handies, wave or point yet (although did copy me clapping once when about 13 months but then not again). Does not respond to 'give it to me' commands or 'where's the?'. I don't think he understands what I say.

Both I and dh are now very worried. Partly it's the not knowing what will come - what will my ds be able to do, will he be ok in life. Partly it's afraid of finding out answers we don't want to hear. I just feel sad all of the time now. We don't want to talk to friends or family about this yet until we know more.

Does this developement delay story sound similar to any of your experiences and how did it turn out? How did you get past the original feelings of sadness or does that ever go away?

[trace2]

sorry about this i dont know cos dd only 20 weeks old but i think sone one will answer soon

[Joggeroo]

Hi
my ds now 5 has Global developmental delay (cause unknown) which was diagnosed when he was about 3, though really he did things on the later end of the developmental spectrum for some time before this. From what I remember he crawled at about 15 months and walked at 21. His most obvious problem was his language development, attention and understanding.
I can identify with some of the feelings you say you are experiencing right now, I don't think any of us can really know whether our children will be ok in life, it's a long road to adulthood. Feeling sad is a bit like a sort of grieving and that's quite natural and it does fade. /there's a tricky balance between needing to know what's going on so you can getthe most appropriate help and wishing it would all be ok. I have times when I feel sad 2 years on, and have had to switch off thinking about the future, live for right now a bit more.
do you have portage in your area? they were very helpful with my ds and focussed on the positives rather than the delays.
We didn't discuss ds's problems other than as a couple and with the 'service co-ordinator' who co-ordnated the child development team (who was a fabulous listener and source of information) for a long time, didn't want to hear everyone's opinion on the subject. also dignois can take a little while so in a way it's better to hold off on the 'what ifs' until your ds has been thoroughly assessed by all the professionals who might need to see him.
You mentioned you don't think he understands you, my advice would be to keep things as simple as you can, sounds easier then it is, if like me you are prone to waffle. eg. make eye contact and say 'give' (rather than 'give it to me') then give him time to process what you said. Lots of the things I learnt to help ds have helped me with my other children who don't have GDD, so the skills you are picking up now are useful whatever the outcome of any assessments.
Remember that you know your child best, health professionals know about development& medical things, you both have expertise to help your child. As a couple we had to remember to do/talk about other things than developmental delay, as ruminating could be a bit all consuming! Also we both deal differently with ds's delay but we work well together and each of our approaches to life have their strengths.
sorry to hear you are going through this, take your time and be gentle with youeself.

[maggotandjerry]

Hi Diddum,

No direct experience to offer as I have a 12 month old and I don't thnk she has a delay despite prematurity although she has been on the late side with all her milestones but I just wanted to say I sympathise with how you are feeling. Because of my concerns about her generally I find I watch her for development more than I enjoy her iykwim.

But Joggeroo's post is great. Thank you Joggeroo.

I hope you get some more informed answers than I can give from others.