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.

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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..

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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:

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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.

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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