Very Worried abut development of ds

[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?

[pagwatch]

Diddum
my son developed autism at about 20 months so I cannot comment at all about your concerns about your son.
but I would say that the initial feeling I experienced when i realsied that my son had problems was a mixture of fear and sadness.

having a child with special needs changes everything - in the same way that having a child for the first time changes everything. And it is another one of those things that you just cannot understand until it happens to you.
My DS has just had his 11th birthday and we are a very happy family. And he is a very happy child.
It took me personally a long time to get over my shock , not least because i felt so completely inadequate to deal with his needs ( i am not patient, not self sacrificing or overly maternal - just ordinary) but the days pass and you finally come back to the basic truth - that whatever a diagnosis brings, the person in front of you is your child and you love them.
Try not to get nuclear in your thinking - you could be dealing with something minor that sorts itself out in a short time. Try not to examine your son too much. And if you can just wait until you know what you are dealing with it before you worry about how negative this could be for you.
hang around this board for a bit and you'll see that the mums here are just like you and they love their kids too. We just have to work harder than the rest of the population .
Wait and see. i know it is hard but he is still your boy and all may still be fine

[TotalChaos]

Hello Diddum, sorry you and your little one have had such a stressful time. My boy's problems are speech/social type ones, rather than physical, and I really started worrying when he hit 3, so I don't have a similar background to you.

Pagwatch is right that any problems may be relatively minor/relatively short lived, and it's best to try and avoid "going nuclear with thinking" Obviously it's easier said than done to avoild worry. Personally I found and still find the uncertainty very difficult. I try to focus as much as possible on what DS can do, and the next steps for him to aim at with his speech etc, rather than compare him to other children his age. From the speech point of view, it sounds good and on track that he responds to his name, and think that 18 months would probably be the time to worry about not pointing.


Friends and family tend to try and reassure (I find those with children tend to be the worst).

[TotalChaos]

there are 2 relatively cheap books I would recommend regarding concerns about speech/communication

1)You make the Difference by Ayola Manolson
2)Parent's guide to Speech Problems by Debbie Feit. (great for combining emotional etc support with practical advice)

also if you have free time during the day, many surestart centres run Hanen courses (to help with communication). If you can get on one run by a speech therapist that would be great, but if not, it's still worth doing. (its ( 9 X 2 hour sessions).

[Diddum]

Thanks for your replies.

I'll try take on board the 'wait until you know advice' and stop imagining future scenarios until ds has been fully assessed. Although in my heart of hearts I think I know it's not all going to just go away (and even then I can't stop hoping this some of the time). Just right now I feel very cut off from what was the 'real world'. Family and friends come and go and I lie to them about how I'm feeling and how we're all getting on - 'great' is my stock answer. They don't see yet that ds is probably developmentally delayed We just don't want to get into explaining until we know more - also I think people who have not had any experience of this really don't have a clue - they just trot out a story about a friend who had a child delayed in one area (maybe they walked 3 months late) and turned out great - I know they mean well but sometimes I feel like our concerns are being dismissed.

I'm in Ireland so the service here are different and we're not even at the stage of engaging with them until we get a more formal assessment (hopefully in the next 2 months).

In some ways I know we are very lucky. I have a wonderful optimistic and very involved husband and a lovely happy baby boy.
At some stage I'll have to move on and get past spontaneously bursting into tears everytime I'm on my own or see my ds sleeping in his cot (he's so lovely).

ps sorry for posting the same thread twice - very confusing