Why does my brother have to ruin everything?

The nativity was done, the presents bought and the food all ready. When your twins are six they ought to be excited about Christmas Day. One of mine was. The other was totally oblivious to it all.

But we bought him gifts regardless.

The day started badly. Pretty badly to be honest. Isaac refused to come downstairs even though we had changed and dressed him (in his school t-shirt and jumper as he still refuses to wear anything else). So while Naomi was embracing the magic of it all and loving the fact she had received the very toy she wanted, there was a noticeable absence in the room. I should have suspected something. But I didn’t want to miss that magic of seeing my daughters face when she opened her gifts. Plus she wanted me there.
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It was all too late. Isaac was busy upstairs, in my bed by now, having a party of his own. His ‘gift’ was of his own making and the smell was overpowering. The bedding, his clothes, his body from head to toe, and anything else nearby needed urgent attention. So while I attended to a screaming, fighting child, a filthy room, and smelly clothes, I was missing out on my daughter’s special moments. Moments I will never get back. And her happiness at getting presents was tarred by the fact her mum was not in the room to share it with her.

‘Mummy, why does he do that?’

Stress, lack of attention, sensory seeking? Who knows really. He can’t say and I can’t mind read. It wasn’t a good start though.

He came down and saw her new toys and tried to attack her. Despite him having plenty of his own he showed no interest in any of it and started screaming again. Naomi wanted to defend her toys but having sustained quite an injury from her twin less than a fortnight ago (which still has yet to fully heal) she was scared. So she started crying.

‘Mummy, why won’t he leave my things alone?’

Jealously, lack of understanding, curiosity? Who knows. He can’t say and I can’t mind read. How do you support siblings when a child can be so unpredictable and violent?

Later on we went out to grans for dinner. He ate a bit then climbed on a bed in a room, as he always does. He was extreme sensory seeking (use your imagination here) and was not going to be stopped for anything. Finally he returned to us covered in sweat and pulled me to the kitchen. By process of illumination we found he wanted a pineapple. As he pulled the leaves off and played with them, despite having lovely new toys there to play with, his twin sister once again was curious.
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‘Mummy, why can’t he like toys like I do?’

Lack of imagination, developmental delay, sensory issues? Who knows. I can’t always answer as eloquently as I should.

We returned home and I prepared a light tea for everyone. Lots of snack foods and treats. But no meal is complete for Isaac without mashed potato and gravy. And I had not made any of that. And because it was laid out as a buffet his plate was sitting empty (so to him he wasn’t getting any. Why did I not think about that?). He went crazy! Cue screaming, crying, food flying, crockery smashing and a huge amount of stress. So maybe I should have made mash and gravy but he had already had it twice that day and it was all food he usually loves. Surely we can have one mealtime without mash and gravy? I was exhausted, angry, stressed and frustrated. I walked away.
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The son screamed and lashed out more. The daughter cried. The husband’s stress levels were at boiling point.

I returned to comfort my daughter. Through tears she snuffled,

‘Why does my brother have to ruin everything?’

I met that question with silence.

We tried. We failed. I’ve came to the conclusion tonight that Christmas may be best done in private with my daughter in her room. It isn’t fair on her, on us, or on her brother. I have 365 days to work out how to make it better for her.

It starts with the tree coming down tomorrow.

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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I’m still a mummy

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I watched the little girl shuffle across the floor on her bottom the exact same way my daughter used to do. So pretty, innocent and delightfully happy. I approached her mum and commented on what a wonderful way it was to get about. Mum didn’t seem so sure. The baby was only just over a year so I shared with her how my own daughter used to do the same and what a smart way it was to get about as it allows you to see where you are going and take things with you in your hands, both of which are much more difficult when crawling on all fours.

Mum seemed reassured when I spoke about how my daughter walks, talks, goes to school and is doing well academically. We smiled at each other, looked at each other and the conversation flowed. And then something changed. I mentioned, almost without realising, soon after, that my daughter has autism. And the conversation pretty much ended there. Any confidence and reassurance I had offered about her daughter seemed to vanish instantly. Somehow I wasn’t in a position to support or encourage because my child had some sort of disability. I am sure she probably just didn’t know what to say or felt awkward or maybe thought that somehow her daughter’s shuffling in the same way as mine may mean I was suggesting her baby may also have autism. Who knows. It just changed things the moment that word was said.

It isn’t the first time that has happened too. Neither of my children are potty trained and I find other parents avoid even talking about that when I am around. And some even find it strange if I offer to take their child to the bathroom if they require help. Maybe they think I won’t know what to do as my own children are still in nappies or maybe they feel it may upset me. Neither of those are true. When I mentioned to another friend how my son also loved being in a ball pool as a baby and still loves them now she seemed to want to change the subject. Maybe the thought my six-year old was still enjoying what her one year old likes felt weird. I am not really sure.

I sometimes want to say to people that just because my children have difficulties does not exclude me from the mummy club. I am still a mummy. My children still breastfed, had wind, were sick, went through teething, cried though the night, spat out solid food when they first tried it, learnt to sit and stand, walk and crawl and drove me crazy with noisy toys. They still pulled clothes out of drawers, fell asleep when I least wanted them too, loved throwing food from their high chairs and needed nappies changed at the most inconvenient of times. They were still children. And I am still a mummy.

The only difference is my children did these things at different times. I remember the breaking back pain of having to hold your babies hands to help them learn to master walking. It is just I was doing that with a heavier, slightly taller three-year old rather than a lighter, smaller one year old. But I still did it. Because even when children have a delay or a disability they mostly still have to go through the same stages of progress. They still have to master standing, balancing and confidence before they learn to walk. They still have to master sounds and listening skills and facial movements before learning to talk. It’s just my six-year-old got stuck somewhere when the one year old sailed through that. They still have to go through toilet training whatever age that gets mastered.

Identifying with you in your child’s progress does not mean your child has the same thing as mine. It just means my children are just as normal as yours. I still had to enrol my children at school. I even saw one take part in a nativity this week. And my children will still hate the sprouts for Christmas dinner like most other children.

I guess I just feel sometimes only going to things for disabled children, or ones with autism, or neurofibromatosis, or whatever, isn’t helping. It is often the only way we can access things and so I am all for making accommodations for families like mine. But it has the negative effect sometimes of making people think we are different. In some ways, of course, we are. In the community I live I would find it very hard to find another non verbal six-year-old or a six-year-old still in nappies for example. But I could easily find another six-year-old just like mine who doesn’t like doing what he is told, likes playing on an iPad and hates wearing a hat. I could easily find a six-year-old like my daughter who likes books and Thomas tank engine and baking cakes.

This Christmas please see my children the same as yours. Children with dreams and hopes and a bright future. Children who will wake up on Christmas morning to new toys, whatever they are, and who may end up playing with the box longer than the toy. Not because they have autism or developmental delay, but because all kids love boxes!

And just like every other mummy I want to make my kids happy. I want to hear them laugh and I want to have quality time with them. I want to be included with other parents too. Everyone is different but kids, disabled or not, are still kids.

And I am still a mummy.

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All I want for Christmas is to hear his voice

imageAnd so another December has begun and Christmas is almost upon us once again. There is something so special about this time of year with the fairy lights, and Christmas carols, children’s nativity plays and the joy of giving. The awe of little children’s faces as they open up a gift that was so wanted, wether it be from Santa or family. That is what parents long for and why families will go to extreme lengths to see a smile on a child’s face.

But what if you have a child who can’t ask for anything? What if you have no idea what they would like because they struggle so much to communicate and play with so little?

Six years ago I gave birth to a beautiful baby boy. An I am still waiting to hear him speak.

I want him to argue with me. Shout at me ‘no’ and tell me he is angry.
Because that would be words. And it would be beautiful to hear.

I want to hear him singing little children’s Christmas songs, making up words when he can’t remember them and laughing at the silly versions I sing back to him.
Because that would mean he understands. And that would be beautiful.

I want to be able to take him to a Santa’s grotto and hear him list of a spiel of toys and games he would like even if it would break the bank to buy him them.
Because that would mean he knows toys are for playing with and has the ability to choose one over another. And that would be beautiful.

I want him to have a part in the school nativity and practice lines with him until I could say them in my sleep.
Because that would mean he was included like all the other children and he would be just like them. That would be beautiful.

I want to take him to a toy shop and hear over and over again ‘mummy can I have, mummy look at this, mummy my friend has this and it’s brilliant, oh wow I never knew you could get that’ and so on.
Because while other parents find that annoying and frustrating it would be music to my ears. Words from my child would be beautiful.

When someone gives him a gift I would love to hear his little voice say ‘thank you’. When someone offers him extra pudding I would love to hear his little voice say ‘yes please’. That would be my Christmas dream come true.

To have him say ‘can I have this dvd on mummy’ or ‘I want lifts’ when he hands me the iPad on you tube would be wonderful.

He once said ‘mummy’. I was so excited I put a status on Facebook and wrote an entire blog about it. I had to wait over fifty days before he said it again. That was over a year ago and he has hasn’t said it since. I thought I heard him say ‘on’ two months ago when I did a huge amount of intense interaction with him. If it was a word we have yet to hear anything like it again.

They tell me we need augmentative communication now. In other words we need to lessen his frustration by using pictures, technology and sign language. These are all good. But I still just want to hear my baby boy’s voice.

I hear him cry. I hear him scream. I hear him whine and make baby noises. I love his giggle and I treasure his ‘ahhh’s and ooooh’s’ that does when he is happy.

But all I want for Christmas is to hear his voice.

If only every christmas dream came true.
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