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SN children

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Original poster

Am struggling with mum and toddler get togethers

41 replies

sleepyhorse · 16/04/2011 22:57

ds who is nearly 3 still doesn't talk and has been refered to a paediatrician by SALT which I'm finding really hard as not sure what outcome is going to be. I have a lot of friends with little boys too and today we spent the day round a friend's who had a get together and there were a group of little boys there all younger than my ds and all talking really well. I just found this so hard and heart breaking as just kept thinking that should be ds. Is anyone else struggling with this??

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raffle · 17/04/2011 19:38

I've found this really hard too. Birthday parties where the other children are playing and interacting and PJ is running round and round a scrap of wrapping paper on the floor :(

Got a BBQ next week which I'm not looking forward to

janx · 17/04/2011 20:27

sleepyhorse - my ds is 3.4 and has severe speech delay and I so know where you are coming from. Often I feel surrounded by children who speak so well - I get tired of explaining. My dd (6) has no language problems and luckily can understand her brother completely - although he mainly uses vowels. Some days I really feel he is progressing and then I bump into to someone with a 3 year old and realize we are way behind. I would love to meet more mums or dads in my situation but it seems hard

mumu80 · 17/04/2011 20:56

sleepy horse you replied on my thread the other day on - speech delay success story!
i understand how hard it is going to groups, its natural you feel sad if there are younger kids talking away, i personally gave playgroup etc a miss while we were going through the same process as you,i was better to avoid these situations than to spend the rest of the day in tears.
i know it is a worry him being referred to paediatrician etc 'im sure he will be in the best possible hands.
lucky everything worked out well for my DS but i found it extremely hard in social situations, and if i am honest i felt a bit envious that other kids were more developed than my DS.
It could as in our case just be that he is a slow starter, we had concerns with the poor eye contact,lack of concentration, obsessive behavior, no speech a swell, i'm glad we gave him a chance to develop in his own time before he ended up being labeled with something.
You sound like you are a very good mummy and i'm sure you are doing all you can
x

pigletmania · 17/04/2011 21:36

I was recommened this book by another MNetter on here, and its so good its called Ten Things Every Child with Auism Wishes you Knew written by a consultant and parent of a child with Autism. This will explain better where i am coming from.

In one of the Ten Things is: please focus and build on what I can do, not what I can't' The author wrote " I cant learn in an environment where I'm constantly made to feel that I'm not good enough and that I need fixing"

*I am first and foremost a child. I have autism. I am not primarily autistic" Meaning that autism is only one aspect of my total character it does not define me as a person.

I think that these two points that the author made are very valid, we are so focused on the ASD, the problem, that we loose sight of the child underneath, that they are a child just first and foremost in their own right, and that they have strenghts and weaknesses like NT children, just that they need a bit more help to achieve their goals.

Original poster

sleepyhorse · 17/04/2011 21:40

Mumu80 - thanks again for your comforting words. Just wondering, did your ds regress with his language at all when he was a bit younger? My ds used to talk a bit when he was about 15 months and then stopped so I think for me this us my biggest concern as I know it can be a huge red glad for asd.

Janx - don't suppose you live in bucks/herts? If so we could always meet for a coffee to support each other?

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chocjunkie · 17/04/2011 21:40

I am in pretty much the same boat as you are, sleepyhorse: DD (3.2) with severe s&l delay, saw the salt recently and have now been referred to the dev paed. it is a worrying time.

if you don't feel comfortable with the toddler groups, do you have any other friends (with children) you can meet? that's what I do.

we don't go to toddler groups anymore. I just can't do it. DD doesn't like being among other children and won't play with them anyways and I find it far to painful to see all the other NT children playing and chatting away whilst DD is kicking off again. and don't get me started on all these competitive mums...

I have a couple of friends who had their DC around the same time as I had DD. I have been seeing them regularly since DD was born and I am fine with having their NT children around and DD is ok with them as she is used to seeing them. also, it does me good having some grown up conversation and as I have known them for a long time, we talk a lot about stuff which is not child related (unlike the toddler groups).

pigletmania · 17/04/2011 21:45

The author goes on to say "As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may to too low" And if I get a sense that you don't think I can do it, my natural response will be: why try"

This sums up perfectly what I was trying to say and the point I was trying to put accross.

janx · 17/04/2011 21:52

I am in north london sleephorse...dp works in Beaconsfield quite a bit - is that anywhere near you?
re your ds - there is another mnetter whose son spoke earlier on and then "lost" his words - no mention for asd for him. She often comes on the boards so may have some advice. We are going for an assesment at the Nuffield Centre this week - think he may have verbal dsypraxia

Original poster

sleepyhorse · 17/04/2011 21:58

Hi janx am not too far from beaconsfield, about 30 mins. If you are ever in area email to my inbox and maybe we can meet up. Sorry if I sound ignorant but what is verbal dsypraxia? What are the symptoms?

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Original poster

sleepyhorse · 17/04/2011 22:06

Sorry I meant red flag, not red glad (this iPhone has a mind of it's own!)

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janx · 17/04/2011 22:17

Well from my understanding its a problem with translating what he hears into speech. His hearing and understanding is fine, but his brain finds it hard to work out how to make the sounds. We are working on real basics like making the w sound and then lots of repitition. He can now say wait why which is big progress. Some constanonts are a lot harder for him. Can't say his name for instance as it has L and K in it. My partner is dyslexic and had a lot of speech problems as a young boy and it runs in boys in his family. What I find hard is that he finds friendships hard to forge as he is hard to understand
Do you ever go model railway village in Beaconsfield? Was planning to take ds again one day

EllenJane1 · 17/04/2011 22:22

Sorry, sleepyhorse, we went off on one a bit there, in the middle of your thread! Please realise we are all just passionate about doing the best for our DC, just like you are. In amongst the semantics were a lot of really good recommendations. I didn't want the Hanen course and book to get lost, they are really good.

I carried on going to toddler groups until my DS was 3. At that stage he was lucky enough to get referred to an excellent SN preschool with it's own SALT and OT on site and where all staff were Hanen trained. My DS came on lots. But it was still in leaps and plateaux, which can be quite disheartening if you are in the middle of a plateau.

I made some great friends with mums of other children with SN, no competitive mum nonsense from them, just mutual support and celebration of the small successes our DC made. And they do progress, just sometimes at a different rate. I learnt only compare with your own DC from 6 months or a year ago, and never with NT children. If you can find a local support group that may help.

Original poster

sleepyhorse · 17/04/2011 22:32

Chocjunkie sorry to hear you are having a hard time too. How long have you been told you will need to wait to see the paed? I think my wait is going to be about 2 months. I think for me the hardest thing is not knowing what is wrong, I have days where I look at him and think he is just a normal little boy with a speech delay, then the next day I start having my doubts again and just find myself crying...and can just feel me and dh drifting further and further away as he doesn't really want to talk about it.

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Rockmaiden · 17/04/2011 22:48

Oh Sleepy, I really feel for you (hugs)

I could have wrote your OP 3 years ago and know exactly how you feel, it's heartbreaking. I am sad to say I stopped going as couldn't take it but things do get better.

My son is nearly 7 now and sadly still dosn't talk other than 4 words (diagnosed with asd, adhd, gdd) and while things are still hard it really isn't as bad as you first think.

When autism was first mentioned to me I pictured this un-loving child trapped in his own world that would never express any form of affection for me but I PROMISE YOU the reality is so different.

My son is such a special little boy and I couldn't love him any more than I do. His autism makes him who he is.

If you need to chat please feel free to PM me, I have been there and know sometimes you will just need to vent and complain about how unfair life is. It does get better!

pigletmania · 17/04/2011 22:49

sleepyhorse you have described exactly how I felt. We are seeing the paed and he is going on the ASD route, will decide definitely at a multidisciplinary team meeting in September. I think all nursery teachers should be Hanen Trained or trained in alternative methods of communication as some do not have a clue.

pigletmania · 17/04/2011 22:52

I still think that way sometimes too, but seeing other NT peers is like a punch in the face, though I see her making good progress for dd and thats the main thing. There is so much more difference now than where she was a year ago, and I am trying to focus of dd strengths and her good points not on her bad, if i feel down and negative I dont want dd to be affected by that.

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