An autism nativity

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An autism nativity

If everyone in the Christmas story was on the spectrum…

Let’s start with Mary and Joseph. The story goes that they were not married.
Now that is easy to understand if they are on the spectrum! They would not like change for a start. And the social anxiety surrounding planning and attending a wedding would be very daunting for someone with autism. As bride and groom they would be the centre of attention and be forced into a social situation they would find overwhelming. The sounds, smells and traditions would all be so confusing. And then Mary would have the stress of changing her name. So it makes sense to not get married.

An angel appears to Mary and tells her what is going to happen. The angel even tells her what to call her baby!
Perhaps God knew how to lessen her anxiety by giving her a clear timetable of events? First become pregnant, then have a baby boy called Jesus. The angel may not have had visuals but the sensory experience of seeing an angel would sure help Mary to remember the events clearly. God even took away the anxiety of having to choose the name for her child.

Caesar Augustus wanted to list everyone in his empire.
An obvious case of someone on the spectrum needing to list and order. I wonder if he even lined them all up? Numbers were clearly his ‘thing’ and he needed to have everyone just where he wanted them.

Miracle of the Virgin birth.
If you know anyone on the spectrum you will know that sometimes the unexpected happens. Non verbal children can all of a sudden start saying words, a child who has struggled to talk in school suddenly finds the confidence to speak up, a child who has not been able to understand the concept of toilet training suddenly has a breakthrough. Never underestimate what anyone can do, especially someone with autism! Miracles happen every day.

Shepherds were guarding their sheep.
Great occupation for anyone on the spectrum! Simple routine day in and day out, solitary job and with the calming sensation of the noise of sheep, who are by nature very predictable and calm animals. They were right where they always were that night. The predictability is so reassuring for people with autism.

Angels appears to the shepherds.
After introducing a sudden sensory experience and change the first thing the angel did was lessen the shepherds anxiety. They immediately calmed them by saying it was good news they were bringing. Then they outlined a very straightforward sequence of events with enough detail to help the shepherd find the special baby. Perfect example of how to help someone with autism. Calm, reassurance and knowledge of what is ahead.

Shepherds pass on what the Angels had said.
Even after a length of time the shepherds remembered word for word what had been said to them. Exactly like so many people on the spectrum who can relay with confidence exact words from DVD’s, stories or conversations. Perhaps the shepherds even had echolalia, a very common speech issue for lots of people with autism.

Mary kept thinking.
Some people on the spectrum take longer to process things and can think things over for many months or years. Mary remembered what had happened in great detail and, although overwhelmed, could recall details in incredible accuracy, similar to many people with ASD.

The wise men see a new star.
Clearly these men were experts in their field, almost it would seem, obsessional. They knew everything there was to know about astrology in order to notice one different star and understand what it meant. Obsessional behaviour like this is very common with people diagnosed with autism.

The wise men went straight to king Herod.
Well that is protocol and one must always do exactly as the rules state! There was no thought that the king could be anything different. People with autism struggle with social imagination and just like the wise men can often continue doing things the same way they have always been done because they can not ‘imagine’ how they could be done any different.

The wise men give gifts.
Once again they did thing as protocol and rules stated. They could not imagine coming empty-handed. The gifts were given in an orderly and controlled manner even though they were presented to a young child. It was all ‘just so’ as you would expect for someone on the spectrum.

Mary and Joseph did everything God commanded.
They were very obliging, non confrontational and obedient even when asked to do things that made them uncomfortable. So much like my own daughter who is so eager to please and afraid of upsetting anyone.

Throughout the story God is the perfect example of a therapist. He has it all planned and lays out those plans to each person as he feels they need. He gives them daily schedules, sensory breaks (the shepherds travelled through the night in the dark after having seen a bright angel, Mary and Joseph get the comfort and peace of a manger after the difficult journey), and he keeps it all in order.

This may be written for fun but it does make you think. People on the autism spectrum are just ‘normal’ people like you and I, or the shepherds, or wise men. They are all important and they should all be valued by society.

As you hear the Christmas story this coming week please think about the fact that just like Mary and Joseph had a long and difficult journey to Bethlehem, some children and adults with autism will have had a long and difficult December with all the changes and stresses of Christmas. And let’s believe for some wonderful Christmas miracles of love, acceptance and support for everyone with autism, learning delays and disabilities.

Wishing you all a peaceful and blessed Christmas.

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25 confessions of a special needs mum

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I had great plans for being a parent. My children would play board games with me at night, have friends around for tea, talk to me enthusiastically about their school day, and always say please and thank you.

Then I had children.

So there is more technology than board games, no friends around and no chit-chat about the school day but I still thought we would read stories before bed, go shopping for clothes, kick a ball around in the garden and bake cakes.

Then I had children with special needs.

Parenting is now intense, includes working with a large team of health and educational professionals, involves lots of trips to hospitals, means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a huge amount of joy and love.

It is a different style of parenting. I have thought and done many things I never dreamed I would. Some are weird, some wonderful, and others just brutally honest. Here are my top 25 confessions as a mum to two beautiful, funny and highly individual children with extra needs:

1. I have carried out speech therapy in a public toilet!
My son has a current obsession with hand dryers and I am trying to encourage him to say ‘on’. Where better to find a whole bunch of hand dryers than in public toilets? Yes, I seriously asked strangers to wait to dry their hands in the hope he would vocalise. Yes, I am THAT desperate to have my son talk!

2. I rewarded my son’s defiance!
So he finally at almost six worked out how to shake his head to mean ‘no’. You’ve got to reward and encourage communication even if it does seem crazy saying ‘well done’ when he has just appeared to go against what I asked of him.

3. I have been known to record the bedtime hour of cbeebies so we can watch again at 3am when they wake up in the vain hope the kids will still realise it is bedtime!

4. I made my son dinner for breakfast!
When his current food obsession is mashed potato and gravy you just know it isn’t going to go well with corn flakes on the side! So mash, carrots, peas and meat for breakfast it is then. No rush when mornings start at 5am anyway.

5. I have spent hours in shopping centres with my children and not boosted the economy in any way. Lift doors, escalators and hand dryers in the toilets are far more interesting anyway.

6. I have nodded and agreed at meetings with professions even when I have no intention of doing what they suggest just to get them to leave my home or have a meeting finish. It is just easier sometimes.

7. I have sat in my son’s room staring at his bubble tube even when he has been at school. If it calms him down it may just work for mum too.

8. I have resorted to bribery just to get everyday tasks done. First dressed, then ipad. First nappy change then chocolate. Sometimes there is just no other way.

9. I have taken myself to the naughty step just to get some time out.

10. I have cried publicly in a supermarket because they had no microwave mashed potato left.

11. I have emptied the inside bag of breakfast cereal into an old box of cereal because the packaging has been changed by the manufacturer and the kids won’t eat it any more.

12. I have seriously considered installing a lift or a hand dryer in my own home and actually googled the costs involved.

13. I have stayed up all night researching my child’s conditions in the hope that someone, somewhere is working on a cure.

14. I have taken photographs of lines of toys and elaborate train track set ups so they can be restored to the satisfaction of my daughter in the event of them accidentally being touched.

15. I have felt tempted to tell people my child has a contagious illness so they leave her alone and don’t speak to her. It may avoid the tears and tantrums when she gets home because her personal space was intruded upon and she could not cope with the sensory overload of people asking her questions.

16. I have seriously considered saying my children are much younger than they are to avoid having to mention why they can’t jump, climb, talk and still want carried.

17. I have kissed a waiter in a restaurant because he was willing to get five different options for drinks for my son so he could put his hand on the one he wanted. Some people are just angels in disguise.

18. I have washed and dried my daughters comfort blanket only to sit on it, walk on top of it and stick it inside my jumper for a while so she doesn’t notice it smells different or hasn’t got that dirty worn look about it.

19. I have rushed from one hospital to another because I was frightened to change appointments that clashed as I knew we would have to wait months again for fresh appointments.

20. I have worn my hair down and put on long-sleeved clothing to hide the fact my son attacked me when he was angry and my arms have bite marks and scratches from a five-year old. Why is it ok to admit a partner is abusing you but still taboo to say your child injured you?

21. I have wrapped a packet of nappies up in brown paper to take into my daughters school so it looked like a parcel to shield her embarrassment at being incontinent in a mainstream school.

22. I have told my daughter it is ok not to share. This girl would give away everything to others at her own expense but freaks out if something special of hers is touched. Sometimes others have to recognise when something is very special and learn that not everything has to be shared.

23. I have ignored my phone ringing. Some days it just gets all too much.

24. I worry about the future.

25. I have amazing children. I have a husband who loves me. I am very blessed. But I want to confess that often I still feel sad. And very alone.

So there you have it. They say confession is good for the soul. I hope that is true.
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A special needs Christmas carol

God bless ye precious families
Let nothing you dismay
Remember that our special kids
Might scream on Christmas day
To save you from those children’s tears
Keep receipts for all those toys
O I’m longing for comfort and joy, comfort and joy
I’m longing for comfort and joy.

In lots of towns and lots of rooms
They’ll be strange dinners made
Cos lots of children can not eat
The turkey that’s been laid
So just make chips and nuggets now
To keep your happy boy
Or you’ll never see that comfort and joy, comfort and joy
You’ll never see that comfort and joy.

From God our heavenly Father
Our blessed children came
But he now needs to give us patience
So we can all stay sane
The lights he broke, the baubles smashed
The tree he did destroy
And now I’ve lost my comfort and joy, comfort and joy
Now I’ve lost my comfort and joy.

Fear not said all the family
It’s just the time of year
It’s just because you spoil him
That iPad was too dear
But they don’t hear his high demand
It’s all that he’ll enjoy
But we still sing of comfort and joy, comfort and joy
We still sing of comfort and joy.

The schools are closed for Christmas break
The teachers need a rest
So we’re left caring day and night
But still I say we’re blessed
Lot’s more hugs and kisses too
Times with my girl and boy
And that will bring me comfort and joy, comfort and joy
And that will bring me comfort and joy.

And when it comes to holidays
I need you all to see
Our special kids might be the ones
Who are up in A and E
I’m grateful for the NHS
And all who they employ
To help us spread the comfort and joy, comfort and joy
To help us spread the comfort and joy.

Now to the Lord sing praises
Our children are still here
And with true love and brotherhood
We face another year
So from us all at Christmas time
I hope you all enjoy
Good tidings of comfort and joy, comfort and joy
Good tidings of comfort and joy.

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My name is Isaac

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My name is Isaac.

Please don’t be scared of me. Please don’t laugh at me. Please don’t ignore me.

I don’t bite. (well I do sometimes but let’s not talk about that eh)

They annoyed me, ok. And I liked the feel of it. But I won’t bite you just for saying ‘Hi’. Well not today anyway!

I am happy today. So you’ll be fine. So say ‘Hi’ to me. I might not look at you but I know if you are smiling. That takes skill that does.

I know when people are scared of me. I know when they are laughing at me and ignoring me.

I look like I am in my own world, flapping, screaming, making noises, walking up and down in straight lines. These things are great fun. But I know you are there.

I’m not blind..well technically I am in one eye but you know what I mean! I can still tell if you like me. I’m autistic, not stupid.

I won’t swear at you or be cheeky to you…I am non verbal anyway.

I like attention. But not the attention most people give to me. Laugh with me, not at me please.

I like licking things. OK, I love things in my mouth. Anything. Food, cardboard, plastic, wood, a dummy. Licking tables, chairs, clothes, windows. I’m different. But you are different to me too. And I don’t laugh at you…well sometimes I do but I do it in the middle of the night when no-one knows what I am thinking about. I laugh good and hard then. Roll about the bed laughing. Your sameness is hilarious to me.

I love my sister. She is a right fussy eater but it’s great. I’ve trained her to leave as many leftovers for me as she can. I’ve worked out that dad likes a cup of coffee before clearing the dinner table. I’m doing him a service really by eating all that food before it goes in the bin. Saves me raking in the bin for it later anyway. It’s kind of like my way of washing the dishes. Mum never let’s me do it when we go out though. Wish I knew why.

My sister is funny. She puts toys on the floor and talks to them and stuff. I keep showing her that you lick them and scan them and chew them but she keeps lining them up and moving them about and cuddling them. She even gets these funny ones and puts them all together like to make some picture thing. Like 20 pieces of cardboard. What a waste of good chewing material that is. I ate a few. That soon stopped her. She’ll get them back soon enough. Did you know stuff comes back out you? Quite smart that!

You know what though I love winding her up. She loves this mad thing on TV. “Topsy and Tim” I think she callls it. Rants about it all day. TV is only good if it’s about food. Or something red like Elmo. Everything else is just mumbo jumbo. So I sit in my ball pool full of plastic food. And when I hear that theme tune I rummage and rummage and rummage. Oh that’s a great noise that. Drives her nuts. Makes me laugh. Mum tells her I don’t know any better. Oh I love that mum thing.

That mum thing. Well she is just the best. I raid the fridge, she opens the stuff for me. OK, so I have to look at her and look cute and all that and she says that thing that she keeps saying “Isaac, open”. That just means I get to have it. See you know what to do mum so why ask me? I give her a picture, she gives me the food. Hey, this woman is the bizz. She totally gets me. I have her sussed. I cry, she cuddles me. I pull my top off and scream long enough she gives me that fab red jumper thing I love. She makes that car thing go too. She turns that hard, cold food I eat out of that freezer thing into something even better. She cuddles me. Even when I’ve screamed at her. I’ve even bit her…just to see if she tasted as good as she seems. I’ll stick to licking her and pulling hair though. and pushing against her. She always says my name when I do things like that. That must mean she loves it the same as I do. She can even make that ipad thing work. How amazing is that!

She’s great to wind up too. My favourite game is watching her run down the street after me. She loves that. Well she picks me up and takes me back home so I think she wants me to do it again and again. I’m helping her exercise. I think she has had enough sometimes though so to help her out most days I just lie on the ground and scream instead of walking. I don’t get why people walk when those things with wheels can take you.

Those things are fabulous. But why do they stop? And why would they go backwards? That is just crazy. You get in, chew that belt thing, go where I want and just keep moving. Simple. I make it easy by telling you when you are not doing it right. Listen to me screaming. I’m telling you to keep moving and go the other way. You know the way that guy does in that blue car thing I go in. The one I go in with my bag and red jumper on?They take me to the right place every time. I have them trained. I’m still working on dad. He’ll learn one day.

You know I want to go to that place. With Sonia and Tricia. Where they feed me, let me go outside, take me swimming, give me an ipad to lick and play with, let me climb on thier soft play. That’s a great place that. The red jumper place. I chew my red jumper thingy so they know it’s mine. It’s so comfy and nice and warm and…tasty really. They make good dinners there. And I know what is happening. I am happy there. I don’t bite there. They talk to me there. They accept me.

I wish you would talk to me. Touch me. Play with me. Blow me some bubbles. Chase me down the street. Flap with me, make that ipad thingy go for me. Give me food. Put that red jumper thing on me all the time. Help me take these shoe things off. They irritate me. Why do you all wear them anyway? Let me turn your taps on, splash with me. laugh with me.

Smile at me. Say my name. Don’t be scared.

I’m only Isaac.

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We went on holiday…and autism came too!

Ah, holiday time. Time to get away from all the stresses in life, chill out, relax and get away from it all. Ermmm…I am a parent carer of two children with autism so I went on holiday..and autism came too. Very few people would dream of taking thier full-time work on holiday with them but I had no choice. There is no respite breaks and no other family came with us to allow us time away from the 24 hour needs of the children. There was no holiday from sleepless nights, 4 am rises, sensory issues, communication difficulties and obsessions.

But we had a great time and made great memories. And I treasure time spent with my children however hard and challenging it is at times. And it really was a break from constant visits and appointments with professsionals, dealing with letters and daily phone calls and chasing up never ending referrals and such like. For 7 days we were not fighting for our childrens rights, not doing some sort of therapy or other with them, not preparing them for the next visit or appointment or filling in any paperwork about thier ever changing needs. For 7 days we were just mum and dad. And that was a holiday enough.

We had to choose our holiday carefully though. After all autism was coming too. No loud evening entertainment, no waiting on planes or trains, no visits to theme parks with loud noise and flashing lights to trigger seizures. No sailing or open seas for Isaac to dive into, no hotels full of people to complain about his sceaming. Nowhere too isolated in case of medical emergencies (Isaac has pica where everything goes into his mouth, seizures that could at any time requiring medical care and tumours, so we always google the nearest hospital anywhere we go) but nowhere too busy that crowds and noise would be an issue. Oh, and even for 7 days Isaac would still require his own bedroom. So we settled on a quiet caravan park…well, quiet until we arrived that is! It is one of lifes ironies that my children do not tolerate loud noise but yet their screams can be heard for miles around!

So what is the first thing you do when you arrive at the caravan? Put the kettel on? Unpack? Have a good nosey around? No when you have autsim you might do what Isaac did…lick the caravan!

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And as you can see he had flags with him too. His current fixation is things on sticks. Lollypops, icelollies, flags (especially flags!) and umbrellas. It all goes hand in hand with his utter fixation with straight lines. So you can only imagine his absolute excitement and joy when we drove up to the caravan to see it had decking…rows and rows of neat straight lines. Boy, he could have spend the entire week on that decking come rain or shine. It really is one of the delights of this child that something so simple, something we would hardly even notice can bring him such joy and amazement. It is one of the most enteering aspects of his autism/learning disabilities and neurofibromatosis type 1 that for all his difficulties, he can actually at times be so easily entertained.

He sat like this for hours, cuddling his favourite blanket and running his hands along those beautiful and fixating lines. Who needs kids clubs and expensive enterainment?

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He walked up and down that decking with flags:

ImageAnd with an umbrella:ImageWhile his sister read her books over and over and over:

Imageand played with her trains in the exact same way she always does:

ImageBecause you don’t get a holiday from autism. You go on holiday…and autism comes too!

But we went swimming, we ate out (ok so mcdonalds and pizza hut and a fish supper at the beach count right?), we went to soft play, we went shopping and we even went to the local police station!

Yes, my anxious and sensitive daughter got very upset when we went to a local swing park and found an abandoned cuddly toy dog. She creid bucket loads at the thought of this poor dog being left out in the wet and cold at night without a child to cuddle it and she was equally insistant that the ‘rules’ are you must never take anything that isn’t yours. So mum’s solution was a little trip to the local police station where a kind and perplexed policeman was happy to reasure my tearful daughter that they were well used to looking after dogs (I am pretty sure he meant real ones but don’t tell her that) and that lost little puppies were usually claimed very quickly. It might have been nothing for that policeman but boy have we heard the story of the lost puppy in the park over and over and over…mummy does it have a little girl or boy yet? mummy can you hear it barking? mummy how sad it would have been if I didn’t find it? 

Yip, autism came on holiday!

And autism came home with us too. And it screamed when we came in the door. It seams they preferred going back to the caravan than a house full of toys. Or maybe my boy missed that decking and it’s awesome straight lines? Or the life size plastic ice-creams outside shops that he screamed and strectched his hand out for everytime we passed them (perhaps the seaside has it’s diasadvantages after all!). Or maybe they just liked us being mum and dad for 7 days. But most of all I think they just miss being children and not being constantly talked about, dragged to appointments, watched and assessed and having to perform and work with people or thier agenda all the time. Sometimes it is nice to just sit down, cuddle your favourite blanket, suck a pacifier and watch a dvd. After all even autism needs a holiday! 

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(P.S. Don’t ask the kids about their holiday. Isaac is non verbal and Naomi will only tell you about the night she had a nose bleed, the nightmare she had about a cow coming into her room and that story about the lost puppy at the park! She might also tell you about the fact she was in a magazine too which is also true but she won’t belive you if you tell her you have seen it as she only thinks it was in a magazine at the seaside! For those of you in the UK her story appeared in take a break magazine this week)