Am I expecting a miracle? Or I am being realistic?

[gracej]

Hope to hear your opinions. I really don't know who to discuss this with, and it is really making feel down.
Since DS was diagnosed at 12 months (he has a brain atrophy possible caused by lack of oxygen), I have been really positive about his future. He is now 22 months
I have always thought that if I work hard, give him good therapy, play with him, stimulate him as much as possible, the gap between him and his peers won't increase.
I have come to realise that he will never catch up with his peers, but, I always thought that with hard work he would progress and continue developing.
He is a slow learner obviously, it takes me plenty of weeks (months) of repetition for him to learn things, but he learns. I think he has make fantastic improvement. Overall, he is about 7 months behind in all areas.
My optimism was somewhat torn apart this week, when someone told me that his delay will become worst, the gap will increase. Because children at about 3 years of age start to think about shapes, colours, numbers, more abstract thinking. And it is then when children with development delays start really lagging behind.

This really depressed me. I will continue to work hard with DS, but I keep wondering if I am expecting too much. I though he would be able to go to mainstream, maybe be a year behind, but just be like any other child, only a little behind developmentally.

What has been your experience? I am being overly optimistic in thinking that his delay won't get worst? Or should I just accept things and put my feet on the ground?

Hope to hear from you. THanks

[lori21]

It is so hard to predict how children make progress. Some children will follow behind their peers but for some the gap will get bigger. It sounds as though you are doing all the right things so your child will make the best progress that they can make. There is nothing wrong in being optimistic as long as you don't become overly disappointed if things don't go the way you expect. I've worked with lots of different parents and the parents who cope best are the ones that have high but realistic expectations of their children on a day to day basis, love them for who they are, and celebrate all the acheivements no matter how small other people thing they are. Just like any other parent really.

It might be that mainstream is best for your child but you might find that your lo does best in an environment where there is lots of repetition, high staff ratio, and the work is targeted at an individual level. You have to push for what you believe is right for your lo. My personal belief is that the maximum input they get at an early age the better. We have had some children who come to our special school for the nursery and then because they have had such specialiast input they then go to mainstream, with the peers and with support, for reception / year 1.

[gracej]

Hi Dino. It was his occupational therapist who told me this, she has been working with him for 3 months. I feel that she should, like I, have high expectations for DS. I almost feel as if she's decided that the gap will get bigger no matter what.
That is why I wanted to hear from other parents, is it always true that the gap gets bigger, or is this not always the case.
As lori says, it is so difficult to compare because you cannot really predict how children will progress, but I was wondering if on average the situation gets worst/better/same.

Lori, thanks for your answer. It is nice to hear from someone that has experience with many other parents. I think I will choose to continue having high expectations for DS, DH and I really love our DS for who he is, but it is high to be realistic if we don't really know how far DS could go.

When you mention those children that had good specialist input, what exactly to you mean? And do these children then go on to have extra curricular support with their schooling?

Thanks again.

[gracej]

sorry... meant "hard to be realistic" (not high)

[AttilaTheMeerkat]

Hi gracej,

I have some idea of what you are feeling, it hits me hard sometimes too. It certainly did when he was younger. My experience may help you a little and DS is now 8 years of age.

He was diagnosed with development delay at 2 1/2 years of age. This has affected both his fine and gross motor skills.

He has made progress over the years and the gap has narrowed in some areas. I noticed at that age (3) that the gap between him and his peers was wider than it is now. Children without delay will of course make progress faster than those who have a delay. I was told that they learn the same as other children but it just takes longer. I was also advised by the same person (a developmental paed) not to unduly worry unless he regressed. DS is doing well in mainstream and now has a Statement which he has had since the start of year 1 in Infants. This is a legally binding important document that provides a set number of hours of support per week and provides strategies to help him. It is vital for him in my view. It is something that we had to fight for though because we kept getting refused by the LEA we reside in.

I would suggest you seek 1 to 1 support at preschool, ask about both portage and a developmental preschool place and with regards to his schooling in Infants and beyond a Statement for his school life. It will make his school life hopefully much easier, I would hate to think what my son would be going through if such a document was not in place.

You are your son's best - and only - advocate. Never forget that and don't let the buggers ground you down.

I wish both you and your DS well.

[gracej]

THanks Attila. Thank you so much for sharing your exprience. It has been really enlightening. We are not living in the UK at the moment, and plan to stay were we are for the foreseeable future, so I will go ahead and start investigating how the schooling situation works here. But trust me, your story has given me lots of strength, so thanks for taking your time to share.

FioFio, I will continue doing as much as possible for DS. I am really pleased for you, I can see you have come to terms with your DDs learning difficulties. I don't know what the future holds for DS, but I feel in my heart that he can progress, with the appropriate help. I just need to find that help.

[MrsForgetful]

grace...it is so hard for you now to imagine the life your child will have...as you are still at the point grieving for what you planned....

my eldest is almost 13...i have another age 10 and another age 7....and all have difficulties with intteraction and social skills...which results in 'less than ideal ) behaviour....the eldest is probably the only one with significant motor skills problems...so he does have some problems physicaly....but all 3 are able to communicate independantly verbally.....and though they are very noisy and the language can be very rude...i am grateful for their skills they do have.

so...me.....i've had 13 years to get where i am now...you have had 22 months.

I am told constantly by the paediatrician and teachers that i am 'marvelous' with my boys...and'they wouldn't have progressed so well without what i ahve done'....so far from telling this to be bigheaded...i am telling you this to encourage you to KEEP GOING...yes the gap may widen....it may not...it may reduce....but one thing is for sure YOU WILL ADAPT...and i'm sure that though it can't be measured...that your childs abilities will be optimised if you carry on as you are!

My middle son though 10 and achedemically years ahead...is behaviourly/emotionally guaged at being age 5.. And i am sad that i have to now admit that whereas at 10 i could see my eldest functioning at mainstream secondary school...when i look at my middle son...and am honest....he has not moved forward in any way in the past couple of years emotionally/behaviourly...so am now feeling unsure about whether in the next 2 years he will remain where he is now...or move forwards.
So like you....i know i have to kep trying...but its is hard.

But despite it all....with hindsight of 13 years i do have sucesses to reflect on...which keeps me going....and you are only just starting the journey.
You will have days where you will despair at how to cope...but you do cope...you then muddle on through till the next hurdle...which you hesitate at....but sometimes you are able to approach that with a little optimism...cos you can remember struggling b4 and getting through it...so you feel able to keep going.
Then there are days when you are drained and exhausted by it- overwhelemed etc....thats when mumsnet is great...we all care...all KNOW what you feel.

[lori21]

Grace - you asked about specialist input. I meant the wealth of knowledge and experience that is put into practise by teachers and teaching assistants in special schools / specialist nurseries and the range of other professionals who work with and advise the teachers and teaching assistants in special schools / specialist nurseries.

Talking to other parents is the best way to get support, encouragement, a real picture of how things are etc. I try and organise opportunities for the parents of the children I work with to get together. Other parents are often the only ones who truly understand what you are going through. You are doing the best thing by using MN and try and look into meeting other parents face to face who are in a similar situation to yourself.

[gracej]

MrsForgetful. Thank you so much for your lovely lovely words.
You are right, I will adapt whatever happens, for DS's sake. And I will keep on working with DS.
I really wish you all the luck in the world with your boys.

[MrsForgetful]

There are many of us who have been posting here on the special needs section for 3 or 4 years....we all have children with many different difficulties...and we all are in awe of how each copes with their lot.... so when things get hard- share it with us...and when something great happens...share it! We ALL celebrate a childs first steps/word/ etc...i tend to post all my mumblings on this section...not always relevent to special needs really...but i feel amongst friends here

[Woooozle100]

Hi gracej

I'm in a similar stuation as you - my dd was diagnosed with v rare chromosome disorder at 6 weeks. Not much is really known about it so we were just told to wait and see how she develops - but to expect some problems. She seemed so alert and so like any other baby her age (albeit a v tiny and floppy one!) that I thought she was going to have minimal problems and prove everyone wrong (I also had someone at CDC tell me that delayed babies don't really catch up, mostly just fall more behind as tasks become more difficult and complex to learn. It made me feel sick)

I'm also doing loads and loads of stuff with my dd. She's 18 months now - its difficult to say what her developmental age is - averages around 8 months I suppose. She is coming on - slowly. I suspect her problems are going to be worse than I ever wanted to imagine at the beginning but hey ho. Just focus on all the good stuff and accept the bad days you have as just off moments and write them off. Try not to think about the future too much (hard I know - there was me worrying recently about changing her sanitary towels and how vile that will be). Just focus on day to day stuff. Oh and take all the support you can get (groups / portage / specialist support etc) and carry on doing the stuff yr doing (though take it in your stride and don't get too pressured over fitting in all the therapies and activities. Having days of no therapy stuff will not mean you are adversly affecting your lo's chances. I'm just starting to get this myself