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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

What might have been..............feeling a bit sad today.

15 replies

cwtch4967 · 13/12/2011 15:04

I went to see dd (NT 6) in the infants school concert this morning, she was great, they all were! The nursery class were also taking part, ds went there for the summer term before starting special school. I couldn't help but dwell on the differences between ds and the rest of the nursery class, and it made me sad.
DS is wonderful happy little boy with ASD and learning difficulties, he communicates his needs but that is about it. He can't tell me what he has done in school, has no understanding of Christmas etc. Yesterday he went to see father christmas with his school but couldn't share the experience with us.
I'm usually very strong and take things in my stride but the concert this morning caught me off guard!
I was looking forward to DS first school concert but it has been postponed until January as one of the pupils died suddenly last week.

OP posts:

PattySimcox · 13/12/2011 15:40

Yes it is odd how funny little things can make you feel a bit overwhelmed by the impact of autism.

As DD (NT) is younger than DS (ASD) each year brings something that DD does that DS missed out on but I try to comfort myself with the fact that DS gets a lot out of the things that he does do so not to focus so much on what his peers do

amberlight · 13/12/2011 16:15

Cwtch, not sure if this helps or not....but as a young child on the autism spectrum I had no clue that people were people, and no clue how to hold a conversation with someone in any useful way. But I knew that Christmas was a special time. I thought in pictures, not words. Still do, but I learned to use words. It's amazing what we do understand. But we're not a lot of good at explaining it to other people for a while. Our world can be an amazing place to be though, so please don't feel sad that we're missing out. I wish I had the words to describe how magical and amazing things can seem to me - things that others don't seem to even notice.
But meantime, a for anyone who wants one. I've brought up a son with several different disabilities so I do know what it feels like to be up against amazingly perfect or 'normal' children and think 'oh heck!'

EllenJaneisnotmyname · 13/12/2011 16:21

Amber, every post you write is so full of hope for us with DC on the spectrum. Thank you, I'm sure you will have helped cwtch today.

ChippingInNeedsSleep · 13/12/2011 16:26

Amber - what a lovely post :)

Cwtch - It's not easy & it's only natural to get upset about 'what would have been> from time to time x

Original poster

cwtch4967 · 13/12/2011 16:28

I often wish I could spend a day looking at the world through DS eyes! I do find it hard when I see DS with his NT peers as that is when the differences are most obvious.
Thanks for your input Amber - wise words as usual!

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amberlight · 13/12/2011 16:57

Not just his eyes, either....his ears, his sense of hot and cold and touch and pressure and texture...his sense of smell, his sense of taste...there's so much that weaves into a pattern of extraordinary beauty for us for a good part of the time. Yup, sometimes it's too much, too fast, too loud, too bright, too intense...but when we 'tune in' to something we find fascinating, there just are no words to describe it.
As a young child, I remember Nan hanging foil strips from the ceiling so I could walk through them and feel how they touched my skin and sparkled in the light. The memory is as breathtaking now as it was then. Yet my other family members barely noticed it, from what I could make out. Not many people will share my Christian beliefs, but for what it's worth, I knew God existed way before I knew people were alive and thinking beings.

Some things don't need language to be wonderful.

bee169 · 13/12/2011 17:12

amber- thank you so much for the lovely post - it has made my day :)

cwtch - some days are very hard for me too. Like you, I have an NT dd and ASD ds. Dd(20months) is younger than ds (4) but is already overtaking him - its a little bit bittersweet and when I see his peers its heart breaking. Keep posting here - everyone had great advice/post like amber's

Original poster

cwtch4967 · 13/12/2011 17:46

Amber - wow I didn't realise you are a Christian, it is really interesting to hear about your knowledge of God. We are a Christian family and our faith is a huge part of our life, DS comes to church with us and our church is very inclusive. When the advent candle was lit last week he shouted out "cake" "blow" - candles mean birthday cake!! He got to blow them out at the end of the service.

OP posts:

amberlight · 13/12/2011 18:12

cwtch, I am, though I work with all of the major faiths to help groups to accommodate and value children and adults on the autism spectrum [fmsile]

www.oxford.anglican.org/social-justice/disability/welcoming-those-with-autism-and-asperger-syndrome-in-our-churches-and-communities.html is one example of the work

amberlight · 13/12/2011 18:12

merlincat · 13/12/2011 18:16

This reply has been deleted

Message withdrawn at poster's request.

amberlight · 13/12/2011 18:21

Lots of us do. People may often think of autism as being a Bad Thing but in reality most of us are social justice-seekers who hate to see unfairness or disadvantage, and fight really hard to make the world a more equal place to be. Not all of us, no. Some will have other disabilities that make it much harder, others just aren't very community-minded people. But we're very well known for it.

ouryve · 13/12/2011 22:47

Amberlight - your posts are wonderful to read and make so much sense. DS2 gets so much pleasure from the simplest of things.

Like cwtch, though, I do often feel sad for him. There's a few kids been teasing him for being non-verbal. It makes me angry and his 1:1 and teacher were almost in tears when they found out that it had been happening and that their parents had been pretty much ignoring it. 5 year olds can be taught better, but the adults need their heads knocking together.

He's learnt the songs for the KS1 play, but isn't involved in the final play because it's all a bit too much for him. He's often reduced to giggles and the costumes that his class are wearing have that effect on him!

DS1 didn't get involved with his production, either. He also wanted nothing to do with the school fair on the afternoon. He spent 2 days helping to set it up, though - doing all the fiddly jobs like putting dozens of lollipops into a grid for a tombola and organising leaflets and posters. He loves doing all the behind the scenes jobs that make it happen without having to endure being surrounded by lots of people. This is probably the first time he's been really fired up by all the christmas goings on (though it's been showing in his exhaustion in the evenings and the time it's taking him to wind down and get to sleep!) It's lovely and heartening to see him finding a niche for himself, though, and being allowed to find that niche.

TooJung · 13/12/2011 23:43

To Amberlight, thank you for your link.

MunchkinsMumof2 · 15/12/2011 11:57

It must be the time of year, ds (6) was diagnosed ASD/ speech and language disorder in Oct and apart from the initial devastation I have been positive. He was in the Year 1 Xmas show and was turning his back on the audience and fidgeting and I spent most of yesterday crying. I feel bad for him but he doesn't feel bad for himself which usually helps me but I just saw how different he is. I'm close to tears writing this but hope I can pull myself together soon.

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