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I wish I knew what I need to deal with...

6 replies

GrufalloToes · 10/03/2014 10:52

I know something is wrong with my 15 month old but I don't know what if is. The not knowing, and other people telling me not to worry, is driving me mad.

His eye contact is appalling, he doesn't really attempt to communicate with me or anyone else, he doesn't seem to understand anything that it said to him and I'm quite sure that he doesn't know I'm his mum. How can that not be anything to worry about?!

This morning I sat in front of his high chair & said hello to him. He turned his head away so he didn't have to look at me. When I persisted, he put his arm in front of his eyes to block me.

On the plus side, he is very happy and smiley. He crawls around picking things up and examining them and he seems to enjoy being around his siblings. He likes people who are wearing glasses or hats. He comes at sits beside me at times. When he hears music on the radio he tries to 'sing' along.

I don't think he dislikes people, he just doesn't like eye contact and he prefers to do his own thing. I wish he would say mummy though, just once! Or look at me when someone says "Where's mummy?", or come to me when he is hurt or scared of something.

I know we have to wait and see because of his age. He is waiting for a paediatrician apt. He seems to have good days & bad days. We also cut dairy out of his diet recently and he seemed to improve so much - he responded to his name for the first time ever & he actually pointed a few times. We reintroduced some dairy, just to see if it was a coincidence, and he has just 'switched off' completely again. I am sending off a urine sample to see if he should have dairy or gluten removed from his diet.

I don't even know why I am posting really, it's just that everyone i mention this to in RL tries to play it down & make me feel better. That doesn't help though, I can still see what is front of me! My DH admitted this morning that he knows something is wrong with DS. That has just finished me off a bit really, even though I already knew. Before, DH kept saying he was just a bit behind & would catch up soon.

I feel like if I just knew what the future holds then I could prepare myself and cope. As it is, I go from thinking "He is severely autistic" to "It's just a language delay" to "Actually, he is fine!" and then back again. Sometimes I think I am imaging the whole thing & other times I think it is just blindingly obvious & am amazed that not everyone sees it.

Anyway, thanks to anyone who read this [snile]

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troutsprout · 10/03/2014 11:06

I hear you.
Your little boy is incredibly lucky to have such a clued in mother ! ( I was nowhere near your level of awareness of any problems when my ds was 15 months)
The only thing I would advise at this point is just keep doing what you are already doing ( encouraging communication in every way possible) ... But also document everything .
He will be ok ( and what I mean by that is that he has you as a mum ...so therefore he will be ok Smile

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AlarmOnSnooze · 10/03/2014 11:14

I am sorry you are having these worries. IT is such a confusing time with many different emotions all crowding in.

Well done for picking up on things so early, and getting on a list for an appt. That is a big hurdle out of the way.

I would like to add a note of encouragement re: gluten/dairy issues. My dd1 is severely autistic, and we cut out gluten and dairy following urine analysis. It is the single most importnat thign we ever did for her. she too was switched off and isolated. going gf/cf meant she gained the headspace to be able to learn, and notice us and the world more. that was 7 years ago, and she is back on a normal diet now albeit with supplements to aid digestion), and she has come on leaps and bounds in that time. she is still autistic, of course, and still has major difficulties, but she has come so much further than anyone ever thought she would when she was little (I mean professionals here!).

We would all like a crystal ball to know whether it will all turn out ok - I would for all 3 of my dc, nto just dd1! But sadly we can only take it one day at a time, and do what we can along the way to improve things little by little.

have you heard of the Hanen books for communication strategies? They are More than Words and It Takes Two and a lot of people on this board swear by them.

I would also recommend looking up approaches like Floortime, and there is a brilliant book called 'Playing, Laughing and Learning with chidren on the autism spectrum' published by Jessica Kingsley

Be kind to yourself, it can be hard when you are second guessing everything, but do take time to enjoy your gorgeous boy - he will be your gorgeous boy whether he has ASD or not.

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GrufalloToes · 10/03/2014 14:11

troutspout - Thank you for your kind post, those are really comforting words.

alarmon - Thank you as well. It is brilliant to hear that you feel the diet changes helped your DD. I know we saw a real difference after removing dairy , other people on the family noticed the difference as well but then I started to doubt myself & wonder if we were just imagining the difference.

I am going to get some books & try & stick to those, I think have been googling too much & trying to take in too many things at once. I've been exhausting myself!

This morning, after I'd written that post & was feeling really down, DS unexpectedly amazed me by picking up a hairbrush & brushing his hair with it. That might not sound like much, but I have been working on this with him for about 6 weeks (it was one of the things the health visitor suggested to encourage imitation).

DS has consistently refused to engage with this, as I have brushed his/my hair and then given him the brush & encouraged him to do the same. He normally just smacks the brush on the floor & ignores me: So when I saw him pick up the brush today, I was SO excited!! Just thinking that something has actually got through. I know it's only a small thing but it has encouraged me to keep trying now as I am thinking that maybe he is taking things in even when it looks like he is ignoring me.

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AlarmOnSnooze · 10/03/2014 14:15

that's brilliant! there's no such thing as 'just a small thing' here - we all know how much hard work goes into every little hting Smile well done mini-grufallo!

I am currently watching and waiting with my ds (19 months) as he is behind developmentally. we have had his initial paed appt, and he has been referred on for speech therapy, and so I am not that far away from where you are right now.

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troutsprout · 10/03/2014 14:51

That's fab! .... And I agree that's it's not a small thing at ALL!
Grin

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Handywoman · 10/03/2014 18:03

I hear you. Well done with the Paed appt. Do try and build evidence in the meantime, video him if you can. Buy the Hanen book. Keep posting here.

Thanks

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