The less they get, the happier they are

imageIt is the day after Christmas Day and if social media were to be believed my children have been pretty hard done by. Except they haven’t.

By society’s standard in the country I live in we are considered to have little income. But in actual fact we are very rich indeed.

This Christmas my children received less than many others. Much of what they had yesterday was second hard or given by family. Yet this truly has been our best Christmas ever.

Both of my beautiful twins have a developmental neurological condition called autism. Despite being seven year old my son is unable to speak and has significant communication difficulties. He can not ask or show me what he would like as a gift at any time of year and only plays on rare occasions with toys suitable for infants. My daughter has zero concept of peer pressure or current trends and instead likes to re-enact things she has seen on TV or a DVD. She likes simple, small toys that she can line up.

So I decided this year to give them the Christmas THEY wanted. I was brought up as one of four children with extended family of uncles, aunts and grandparents and a minimum of twelve people at the table for Christmas dinner every year. I loved it! My children would hate this!

So we socialised less. We had less people here; in fact we had no-one around on Christmas Day at all and we all stayed home.

We ate less. The kids had no selection boxes or sweets at all and instead had some fish bites and chips for lunch and sausages and mash with baked beans for dinner later on. We never even had pudding. Not because we could not afford it but because no-one was bothered.

We were at peace. We were content. The less we got and did, the happier we all were.

imageIsaac loved a simple book. And a toy toaster that only just cost marginally more then the wrapping paper I used to wrap it in! A family member bought him a plastic jar of magnetic letters. It brought him huge joy and despite being described by professionals as ‘own agenda’ and ‘in his own world’, he gave me eye contact and smiles and vocalised to get me to tell him the letters and numbers as he showed me them. An inexpensive item bringing priceless moments of love, communication, connection and education.

imageNaomi had a new DVD and some small characters. But one of the things she loved most was a small game of bowling which she used her new characters to play with time and time again. Turn taking, fine motor control, imagination and maths skills all coming into play in a toy that cost just a few pounds. And together we spent some beautiful time together playing a game of dominoes that cost half the price of a roll of sticky tape bought to wrap the gifts in! Gran bought her a tub of Lego and she helped me make a pencil. That pencil became a magic pencil that wrote letters and passwords all over the house.

A few days before Christmas I came back from a meeting at my sons school to a note through my door. All it said was there was a parcel in the bin for me. When I went to retrieve it I discovered two bin bags of wrapped gifts for my children.image I have no idea who did this but it was such a beautiful act. One box was full of second hand transformer type toys. My son has fiddled with these and my daughter is fascinated by the moving parts. Another gift was a craft set my daughter loves and another was some children’s make up which Naomi says will make her even more beautiful. (I don’t believe that is possible!)

It has been a very simple Christmas, by choice rather than need. The children got less but in doing so we ALL got more. More in the way of quality time with them, more peace, more calmness and more appreciation of the things we so often take for granted. For the first time they were not overwhelmed or pressured and neither were we.

I love Christmas; I always have done. But this year my children taught me the true meaning of it all. Baby Jesus was born in the most humble and basic of circumstances and in our humble Christmas this year we found a closeness and a magic we have not had before. My children showed me that the less they get, the happier they are.

Well apart from love that is! You can never ever have too much love!

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My Christmas miracles

imageI believe in miracles.

But the reality and daily grind of life can shatter that belief until it feels like miracles only happen to others. Then I witness a moment; a tiny fraction of time, and that belief is restored once again. Those moments often happen when we least expect it and in the normal everyday occurrences, so we need to be watching and waiting and believing. Sadly too often I am overwhelmed, exhausted and so busy I almost miss those moments of beauty right in front of my eyes.

This last week though I have noticed two miracles with my son. Nothing huge like starting to speak, or new physical skills like kicking a ball or jumping (stuff other seven year olds do without even thinking!) or even independence skills like showering himself.

No to most parents of seven year olds my miracles would seem trivial indeed; unmentionable, so run of the mill they would be taken for granted.

But one thing that happens when you parent a child with additional needs is that you learn NEVER to take anything for granted!

I had taken the children to a Christmas party. The fact we even got inside the door could be classed by some as a miracle. The fact my son was no longer wearing his red school jumper this year (he wore nothing but his school jumper for two years everyday) could easily be noted as a miracle. In many ways that was something I never thought I would ever see. The fact he climbed onto the bouncy castle and enjoyed the vibrations while everyone else jumped was amazing. These are all massive achievements for my son. He never joined in dancing or games and wandered around very much still in his own little world. But that was ok.

He ate when the food was offered and he never had a meltdown or attacked anyone and he was smiling and happy. I could end here as these are all massive achievements for us.

The Santa came.

He has no idea who Santa is. He has no concept of Christmas. So I just held him on my knee while the other children got excited and waited eagerly for Santa to give them a gift. He moaned and squirmed a little with being held but seemed to watch in his own little way. As an adult I knew at some point his name would be called. But how would he know that?

“Isaac” said Father Christmas with his usual smile and excitement.

I was just about to take my sons hand and drag him up. But before I could move he stood, he looked right at that man in red and he walked right up to him, took his gift and brought it right back for me to open!

imageHe responded to his name! He took a present from Santa! He watched others and figured out what was expected!! I am so overcome with pride about those things.

Not that long ago he had no idea what his name was. He would not go anywhere he had not already been to before. He never watched other children. He would not have had any idea what a present was, especially if it was wrapped.

But this weekend I had my Christmas miracle.

And later this week I have another one too. He is only going to be Joseph in his school nativity play! He is part of it! He has a role! And to whatever degree he understands he will be acting out that role. It is what seven year olds do. But something I never dreamed I would see.

In case you did not know, my son has classic autism. He is still wearing nappies and unable to speak. He has Neurofibromatosis, a genetic condition that can cause learning difficulties and delay. He can not read or write or count. He can not dress himself. He is very much in his own world. I worry what the future holds for him, and the many hundreds of others like him in this world.

But miracles happen all the time. And this Christmas they have happened to me.

Keep looking and one may just happen to you too.

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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The 12 reasons why Special Needs parenting is like Christmas all year round

It’s the day after Christmas. My house is chaos, the kids have been hyper and and we have all consumed far too much. Our stress levels at times have been off the scale and the parties feel like a distant memory already. Yet for parents like me so much about Christmas is just a reflection of real life all year round. Let me explain:

1. At Christmas time you spend a lot of time inviting people to, and attending parties.

As a special needs parent I spend much of the year inviting professionals to meetings and attending meetings and training courses. Other than parties specifically for special needs children we seldom get invited to other parties. Who wants a screaming, non verbal child with limited social skills at thier party, especially when he would think nothing of throwing all the party food all over the floor? And to get invites you need friends. Special needs parenting is one of the most isolating things ever. How many parties did you attend this Decemeber? I probably attended that many meetings. How many people did you invite to your parties? I probably had to invite that many professionals to meetings as without my invite they would never have known about the meeting as letters rarely get sent to the right people on time. Folk give excuses to not come to your party? Sadly professionals did the same to my child’s meetings. This isn’t just Christmas to me, this is life.

2. At Christmas you spend a lot of time searching and shopping for that ‘perfect’ gift your loved one requested. 

As a parent of children with autism spectrum disorder I spend hours every week scouring supermarkets for that certain food they will eat. Like your loved one who only wants the certain branded toy and no imitation, my children will currently only eat certain custard, certain ice-lollies and certain breakfast cereal. They are not being demanding or spoilt. They have rigid thinking and can not cope with change. If custard tastes good in that one pot then why change? You almost cried with relief when you managed to buy the last ‘in’ toy knowing your loved one would be delighted on Christmas day? I cry with relief when the shop still sells cornflakes with thier old design box as I know that my child would refuse to eat them had I been forced to purchase the new design box. This is just Christmas for you, but this is real life to me.

3. You will try anything to get the kids to sleep on Christmas Eve night so you can get organised.

I will try anything ANY night to get the kids to sleep. We’re even giving one medication but still rejoice at 5 hours in a row. THAT is our Christmas miracle! Lie in on Christmas morning? A lie in is 6am for my family and so many other families with special needs children. Having hyper children one night of the year is hard, imagine having that every night of the year. Welcome to real life with special needs children.

4. Everyone gets one of ‘those’ presents you never asked for.

So you got bath salts you are allergic to? You got two wallets, and socks you will put in a drawer and never wear? For parents like myself unwanted ‘gifts’ this year have included my child having a seizure, or smearing, and lots of screaming. The overwhelment at Christmas can be far too much for many children with autism. Unwanted gifts can be sold on ebay or taken to charity shops and forgotten about. I can not forget about the struggles my children face. And they face them day in and day out, not just on Christmas day.

5. Your house is noisy, chaotic and full of toys everywhere on Christmas Day.

That just described my house on a daily basis. My son has no idea how to play with toys so empties boxes all over the floor then walks away. His attention span is less than a minute so he fleats from one thing to another so quickly and leaves a trail of devastation wherever he goes. Coping with a messy, noisy, chaotic and loud house one day of the year is to be commended, coping with that every day of the year makes you amazing. Special needs parents have more patience than saints. And amongst all that noise and chaos and screaming they still know if thier child is injured, unwell or even escaping out of some unlocked door somewhere! If it wasn’t for school and nursery my house would look like yours on Christmas day almost every day of the year!

6. At Christmas you buy the same things to eat every year: turkey, stuffing, parsnips and cranberry sauce.

My children have the same diet all year round. My weekly shop is just de-ja-vue. Breakfast cereal, chocolate, ice lollies, cheese, mashed potato, fish fingers, nuggets and chips. You think Christmas dinner is predictable? My weekly menu is just as predictable. I did try cooking Christmas dinner this year. I was an utter disaster so my son ate breakfast cereal as per usual.

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Tradition is ok at certain times of the year but it is getting very boring when all they will eat is the same thing day in and day out. Even the best of us would get rather fed up with turkey dinner by mid way through January! 

7. At Christmas we spend time with people we hardly see but who often have a lot to say about our children.

I see more of my children’s speech therapist and paediatrician than I do alot of my family. And like professionals who only see my children 2 or 3 times a year, so often family think they know how to help my children too. I am blessed with supportive family for most of the time but when people don’t see your children very often they can easily make assumptions. ‘is he not speaking yet’, ‘why haven’t you toilet trained him yet’ and ‘you should really teach him to use cutlery for next year’ can be heard in so many homes over the festive period. Actually it would be nice if the only time I heard comments like this was once a year. Sadly these are things I hear all year round. A present of understanding and love can go a long way at Christmas and all year round.

8. You spend a lot of time writing and a lot of money on postage at Christmas.

The price of stamps is pretty high now and takes a chunk out of your Christmas budget to write and post Christmas cards. But as a one off that can be bearable. It takes quite some time to write labels and thank you cards too. But once again it generally only occurs on this scale once a year. I wish I only had to write lots at Christmas. But with two disabled children I have forms and letters and reports to write weekly. And disability forms of over 40 pages to do periodically too. The postage for forms like that with associated reports always involved taking money out the bank rather than using pocket change. Writing ‘merry Christmas’ on thirty plus cards can give you writers cramp but writing out your sons diagnosis 30 times is heartbreaking as well and wrist-aching. At least reading the Christmas cards is cheerful stuff. And very little of what I write this year will ever get hung up on a wall. 

9. Parents take on super human roles at Christmas; Santa, chef, wrapping expert, entertainer and house cleaning fairy.

Us parents of special needs children have to take on these roles too. We also need to be nurse, speech therapist, play therapist, teacher, supporter and advocate for our children all year round. It is such a relief when Christmas day is over and you can simple be ‘mummy’ again. I am never really just ‘mummy’ as I am the only way my son chooses to communicate. He won’t drag anyone else to what he wants and he won’t allow anyone else to give him his beloved baby bottle. Mum is comforter, communicator, advocate, voice and therapist twenty four-seven. It is demanding all year round not just in Decemeber.

10. It’s never ending trying to keep the house and kids presentable for visitors at Christmas.

You just never know over the Christmas holidays when some relative will pop in. So despite the mass of new toys and general chaos on the floor you try your best to keep things ordered enough should that unexpected guest arrive. And you dress the kids in lovely new outfits on that special Christmas day as it’s a day to remember and celebrate. Unexpected guests, and expected ones, can come all year round to my house. Social worker, occupational health and our health visitor are all regular house guests throughout the year. My children are never dressed smart though as all my son will currently wear is his red school jumper and school joggers. Yip, he even wore them on Christmas day! It’s stressful trying to keep your house clean and tidy and kids settled should someone arrive in the holidays but when that can happen all year round it gets very challenging. Especially with children who think nothing of being naked or tipping every toy box out they can find. This isn’t just Christmas to me, this is life.

11. You watch the same things on TV you do every year.

Christmas is the time for repeats. Which isn’t so bad when you last saw it 12 months ago and you are watching the entire film or programme all over again. But with my children with autism this isn’t just once a year, not even weekly, but daily. The same video clip on you tube, the same dvd, and often the same 1 or 2 minute clip. repeated, and repeated until you hear it in your sleep. Reruns at Christmas are just about bearable, even traditional, but that degree of repeat is head thumping. And still listening to the same segment of Christmas song in July gets very very waring. Suddenly the Christmas TV repeats don’t seem that bad after all!

12. It’s all worth it to see the children smile and realise they have progressed so much in a year.

I knew I had achieved the holy grail this year when both my children showed delight on Christmas day and both played with thier toys. They even broke thier usual morning routine without hesitation which was such a miracle.My son could not ask for anything as he is non verbal but he had shown some interest in some google images so we purchased second hard some special things for him. This was his face when he first saw them:

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and twin sisters face when she saw she had the dolls house she had asked for:

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Thier progress is slower than other children thier age. But like special needs mums all over the world I celebrate the little things as if they were the most wonderful achievement ever. And this year marks the first time both children played on Christmas morning. 

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When the tinsel and tree are all tidied away, the last of the turkey has been eaten and the children are back in school and nursery I will look back on this picture and treasure it. Because it marks progress and achievement and my Christmas miracle. While my son still has no concept of Santa, or the nativity story or even unwrapping presents he did understand that he had new toys and embraced exploring them in the way he loves by scanning them across his eyes and licking them. And he smiled at me. 

That is a miracle that isn’t just for Christmas but for all year round.

Being a special needs parent might have it’s challenges but the kids just made every minute of it worthwhile. The best Christmas present any parent could ask for. And now he realises toys can be played with It will be like Christmas all year round now.

 

I just wiped a tear away…

You’re not meant to cry when your kid sees Santa right? It shouldn’t be emotional when he asks them a question and they actually answer him, especially when your child is 5.

But Naomi has met Santa this year. Every other year she has cried. She has huge anxiety and finds speaking in public, especially to strangers, incredibly traumatic. She doesn’t always answer you when you speak to her, and when she does it isn’t always an appropriate answer. I was therefore very surprised as we walked past a Santa’s grotto in late Novemeber and she asked if she could see him. While her brother sat in his buggy screaming at his parents having the cheek to bring his buggy to a standstill, Naomi and I went in.

Hello Naomi, good to see you today. And what would you like for Christmas this year?”

A toothbrush please!”

He gave her a plastic toy pizza but she was happy at that. I’m not sure if it was relief, a touch of embarrassment at her answer or pride that she spoke to a stranger and went into a dark grotto…but I just wiped a tear away.

santa She has met Santa a few time now. This was at a party for children with autism at a local soft play centre. She was asking Santa this time for a second selection box ‘because my brother had to leave and he can’t speak.’

She might have autism but the love and care she has for her brother melts me.

There was no way in the world Santa wasn’t going to give that sweet girl a second selection box.

She got off his knee and said ‘mummy this one is for Isaac. I know he will love it. But he would not love Santa so I got one for him.’

I think I actually saw Santa wipe a tear away too.

But it is ok to cry at your child’s nativity play, right? Well I did anyway. At both. Naomi was the most beautiful angel I have ever seen in my life. Even though we were sat right at the front row where she could see us clearly, the anxiety was written all over her face. As the room became more and more crowded and noisy I could see she was struggling. But she held it together. Her mouth opened along with the songs but no noise came out. Not even a whisper. Too many people. Too much anxiety. All too overwhelming. When the angels went up for thier little part she needed support to negotiate through the younger seated children. And support to return to her seat again. The tears were ready to fall when one of the other angels sat on the seat she was previously sat on. That lost look on her face and feeling of so much stress. Thankfully I was close enough to show her the empty seat right in front of me that in her panic she hadn’t been able to see. She had been upset that she didn’t have a speaking part, even though she doesn’t speak in nursery. Nursery knew she wouldn’t manage it. And so did I. I was proud she had got this far. Proud to see her with so many others. Proud she was dressed up and trying to sing along even if her voice could not quite bring the words out she so desperately wanted it too. So I watched my little angel…and I just wiped a tear away.

angel

Isaac was in a nativity play for his first time ever. This time last year he was too ill to be part of anything. The year before that he wasn’t even walking. His only part in this years show was to be part of the choir. That did tickle my humour when he is non verbal and not even signing. But he was included and that means everything. He required a memeber of staff on either side of him and a ball of scrunched up tissue paper to distract him and keep him seated but he was there. And what better outfit for him than to get to wear his beloved red school jumper. What a truly humbling experience to see children confined to wheelchairs, coping with daily medical and developmental struggles, many of them non verbal, taking part in a school show to celebrate the birth of a special baby. Isaac saw us and smiled. He saw his twin and pointed. That to me was incredible. And once more I just wiped a tear away..

santa hat

At his school party he actually allowed the staff to change him into his party clothes and take off his school jumper. And today I got to watch him request his snack using photos. For all his sleepless nights, screaming, loss of the only word he had, annoying habits like tipping boxes of toys on the floor then walking away…for all that and more, he is forgiven instantly because I am so incredibly proud of this boy.

His picture is proudly presented on the walls of the school. But he, of course, could never tell me that. The school didn’t allow cameras in to the school show today but I was allowed to photgraph this on the wall. A celebration of achievement. A Head Teachers award no less:

award

Christmas time always makes me that little bit more emotional. Children’s faces when they see they have presents they only ever dreamed of (in Isaac’s case a new unchewed jumper of course!), little voices singing classics like away in a manger, recieving unexpected gifts that show that someone cares, time with family that we never seem to see as often as we should, and food bought and cooked with others in mind. The season of giving and celebration.

It is so easy to get caught up in the pressure of buying and cooking and wanting to please everyone. The desire for it all to be special. But in it all just enjoy those moments of seeing a child smile, hearing a little voice sing and in celebrating what has been achieved this last year.

In the year that saw my baby boy start school, my daughter diagnosed with autism, my son diagnosed as vision impaired and endless form filling and meetings I am choosing to remember those special moments of achievement. While wiping a tear away with pride.