The day my five year old changed her class without saying a word

imageLike every mum I was terrified when my baby started full time school. Even as I dressed her in her shirt and tie I wondered yet again if mainstream was going to be the right place for her.

I had more reason than most to worry as she left that day still unable to dress herself and not yet potty trained, diagnosed with autism and selective mutism, and despite having had an extra year at nursery already, she was still one of the smallest children.

On top of all that she carries a heavy burden wherever she goes even at the tender age of five.

I often wonder if professionals realise the daily weight that siblings carry on their shoulders every day?

As well as her own diagnosis my beautiful blue eyed girl is the twin sister of a boy with even more complex needs. He has tumours, severe autism, challenging behaviour, global delay and is non verbal. She has to live with that at the fragile age of five.

How would she manage without him as his school placement was 14 miles away from hers? How would anyone know to meet her personal needs if she was unable to talk? Would her anxiety, vulnerability and tiny size make her an easy target for bullies? Would her home life stress cause issues with her learning?

I worried. And wondered.

But something changed that first week she started school. And one day her classroom assistant told me that my special, fragile, silent girl had actually changed that whole class of new starts without even saying a word.

It turns out there were two other children in her class who were also silent, but for a very different reason: they were unable to speak English. For ease of teaching my daughter was sat next to these children so the one assistant could help them all. But none of the teachers spoke Russian and everyone was still trying to work out the best way to help this group of children who due to inclusion had all been placed in the same mainstream class.

The teacher taught a lesson and the children sat on the floor. My baby girl sat and listened intently and returned to her seat. The class had been asked to draw a picture and write their names at the top of the sheet. As all the eager children started to pick up pencils and pens Naomi just sat there. She watched as the classroom assistant struggled to help the two others who had no understanding of what had been asked of them.

As another child momentarily distracted the assistant Naomi got up from her seat and walked over to the two children. She took the water holder from the middle of the desk and pulled it beside them. And silently she took each child by the hand and pointed to their own name and then pointed to the top of their paper. She then picked up a crayon and began to mark their paper every so slightly and pointed to what the others were doing.

She waited while they took in her attempts to communicate without language and slowly they began to copy down their name and begin drawing. She looked at them and smiled. And only then did she return to her own chair to try and write her own name.

The classroom assistant cried. The teacher watched.

The most unlikely child in the class had taught them all a lesson that day. The child diagnosed with a communication disorder actually showed them all how to communicate.

She still does not know one word of Russian. But living with a non verbal brother with complex needs taught her something that changed her entire class of children without her saying a word: it doesn’t need words to help people.

I still worry. But I know that in all she lives with she is somehow managing to turn ashes to beauty. And I could not be more proud of her.

This article was originally published on firefly and can be seen here: http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-without-saying-a-word

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There is more than meets the eye

 

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It is the first day of the new school term here and my daughters first ever day at school. I took the standard parent ‘first day back’ photos and posted them on social media. The usual comments ‘they look so smart’ ‘good luck’ and ‘have a great day’ all touch my heart.

There is so much that has gone into today, way beyond the simple purchasing of new school wear, shoes, washing and ironing uniforms and packing bags. For weeks now I have had to prepare these children for this major change in routine, even though it was previously familiar to Isaac. Seven weeks is a long time in a child’s life to get used to going out with the family, eating lunch at home and playing with toys and technology.

So my autism mummy mode took over and prepared social stories for Naomi, visuals for Isaac and lots of walks to Naomi’s new school even though it was closed. Both of them have books all about their summer to take into school. And we have read about Topsy and Tim, Biff, Chip and Kipper and everyone else you can think of starting school!

Isaac has a photo album full of stories and photos to share with his teacher. He has no other way to share his experiences from the last two months as he can not speak. I sat with him for days going through all the photos we had on his Ipad and having him point to the ones he especially liked. Then I sent them off to get printed. There was no surprises that the majority featured food! But it is his story and if he was able to talk these are the things he would want to tell his new teacher about. As his teacher is brand new to the school and only knows about Isaac from information the school has (assuming this has been read), I so hope someone will sit with him and take a few minutes to allow him to share his summer with them. This is as much about transitioning from home as it is to school. We are all in this together.

Naomi’s new school had given the children a summer scrapbook to do at home. The pages were blank which immediately caused Naomi huge anxiety. She needed guidance and instruction and clear boundaries and pages that could contain ‘anything about your summer’ where far too vague. So I helped her structure her ideas and we had a lovely time together as she drew her family, stuck down photos of some things she enjoyed and cut pictures from magazines. Once again I hope someone takes the time to get to know my daughter and puts no pressure on her to speak if she can not yet overcome her anxiety to do so.

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We hit some very real challenges when we found out that transport arrangements for taking Isaac to school were all changing. I sighed. If only the ‘powers that be’ had any idea how change affects my babies. For the sake of saving pennies they change contracts and providers taking no account of the needs of the children. How would they feel to watch their child bite himself, bang his head and run back inside the house when he has to meet a new driver and escort and see a new taxi? I bet their heart would break like mine. But I swallow hard and do what we can. Take photos of the people, the taxi, and his school. But still we have the screaming and the self harming. And all I can do is pray; pray that he might one day understand, pray for patience for these new people in his life and pray for a way to help my baby understand. And then I realise our fatal mistake! We arranged for them to visit at dinner time! It really was that simple. We had been saying ‘see taxi’ and ‘new driver’ and ‘school taxi’ to him and in his mind he never gets in a taxi at that time of day and he certainly doesn’t go to school after his tea! So when it came to the day, the one you all see the photo of, off he went. Because that was right: first taxi, then school! And the promise of a school dinner had him flying right out the house. (was my cooking for the last seven weeks really THAT bad?) Can you tell any of the trauma we went through just from the photo?

There’s more than meets the eye.

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As I took Naomi to her school for the first day and finally left her in her classroom sitting at her desk with all the other children I had the same emotions as all the other parents there. What you don’t see is the fact she is the first child to go to that school who isn’t toilet trained. She is the only child in the room wearing a nappy. And she drank her milk that morning from a bottle too. But as all the other parents made their way out of the building a line of adults waited to talk to me. Then I suddenly realise there is more going on: An autism outreach worker, two classroom assistants, the class teacher and the new Head teacher too all waiting to introduce themselves. Though they were not in today there will also be speech and language therapist, occupational therapist and various other professionals involved too. Because I have pushed for as much support as I can get. She may be going to mainstream but she will jolly well be supported.

There will be meetings, reports and iep’s written up within weeks. There are still some unknowns but she went there today, and she held it together. And I am so proud of her for that.

This afternoon and tonight we will have the aftermath of the first school day. The stress doesn’t end for these children at the school gate. Autism, nf1 and developmental delays are 24-7. We will have it today, tomorrow and forever.

The photos are a great memory of one special day. Thank you for liking them, commenting and loving us.

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Please remember though that behind those photos there is more going on than meets the eye.

And that will be the same for so many families of special needs children too.