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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It doesn’t take much

Life, for me, is a very delicate balance.

The balance between meeting the needs of my very different 5 year old twins. The balance between being a good mum and also being a good wife. The balance between keeping my house clean and tidy for the many and varied professionals who visit but also allowing my children to be free to play and be at home. The balance between trying to move my children’s development onwards but also being very aware of thier need for sameness and the huge anxiety that change brings. The balance between encouraging my son to speak when he has no language but also facilitating him by providing a means to communicate that does not involve speech. The balance between wanting to teach my children social rules and conforming to social norms but also allowing them to be the unique autistic individuals God made them to be.

My selfish desires for quality photos of my children on the wall, to celebrate Christmas as much as possible, to see them in nativity plays and shows and to take them to interesting and educational places like museums and castles, to go out for family meals sometimes and visit family. But balancing that with the fact neither of them do social activities, they have serious sensory issues that make going out a challenge,what is interesting to me is maybe of no relevance to a 5 year old who is really just a 1 year old developmentally, accessing places with a disability buggy is a major challenge, and sometimes the best thing for everyone is just the safe haven of home.

It’s a fine balance.

And it doesn’t take much…to upset that balance.

Somedays we get it right. And others we don’t. For example:

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Since he started school in August and started wearing a red jumper as part of his uniform Isaac has insisted he wears red jumpers every day. And every weekend I try and break some of this rigidity by once again attempting to put on other clothes. He screams, bites, cries and becomes very distraught until the battle becomes more than it needs to be. Sometimes as a parent you need to be willing to lose the battle in order to win the war. So the red jumper goes back on.

It doesn’t take much …for calm to be restored.

But some days you really would prefer he wore something else. Like the day I decided to try and take the children and my mum to a photo shoot. A huge risk but something that was a dream for me for years. But also a major hurdle for the children. That delicate balance between my desires as a mum and thier needs as special children. Compromise..we will book a photographer used to dealing with autistic children and take items with us the children really love. So Elmo DVD and DVD player, wooden farm set and Naomi’s favourite cuddle toy of the day, and biscuits! We only lasted 30 minutes in the studio but I got my hearts desire:

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It doesn’t take much…to make my dream come true.

The balance between both dad and myself longing to attend Isaac’s first ever school parents night with the fact that both children would be upset at the change of routine. It would take a military operation to prepare them for the fact gran would be here at dinner time and the need to have a dinner both children and gran would eat, prepared and ready to serve, prior to Isaac having a meltdown because he sees someone cooking and Naomi screaming ‘I don’t like that!’ Oh and not fogetting a 26 mile round journey just for a 20 minute meeting with his class teacher. But the report and pictures and video clips we saw were worth all the effort it took.

It doesn’t take much…to make me a very proud mum.

When we were out at a local shopping centre and for the first time Naomi asked to see Santa. To see her overcome her anxiety and sensory issues to walk into a dark grotto and talk to a stranger. And to hear her being asked a question I knew she may not feel confortable answering. ‘What would you like me to bring you for Christmas Naomi?’ I gulped, held my breath and waited to see how she would respond. “A toothbrush please!”

It doesn’t take much…to please a child.

When we finally got a letter in the post with details of a proposed respite plan to start in the new year. Once again we had to break the children’s routine of going to church every Sunday to take them to a new centre to meet new people who hopefully will look after them both for a few hours once a fortnight starting next month. I could have found myself dealing with two anxious, upset and screaming children. Instead Isaac took great delight in exploring the windows of the room and examining close up a mural on the wall. And Naomi sat and drew a picture with beautifully lined up ordered pencils. While I filled in forms in duplicate giving every little detail about my children and life imaginable. It isn’t easy admitting you need a break. It isn’t easy dealing with disability times 2, 24 hours a day, whilst trying to keep your marriage strong and your bank balance healthy. Knowing there is a chance of a little break next year spurs me on though.

It doesn’t take much…to give me hope.

Naomi being given the nursery teddy bear to bring home and look after for a day. A box full of cuddly toys already but there is something wonderful and special about this nursery bear and all that they sent home with it. So ‘Sarah’ came out for lunch with us because her brother was having a school trip today.

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It doesn’t take much…to make a child feel special.

Recieving an e-mail from Romania from someone who reads my blog. Knowing someone has been encouraged. Knowing you might have got the balance of humour, reality and the sheer joy of raising two wonderful children with special needs. Just knowing that someone cares. Realising that there are other families facing the same delicate balance of raising special children in a society that does not always celebrate them. Knowing you are not alone. Appreciating the time and effort it took someone else to contact you.

It doesn’t take much…to touch another life.

Life is a very delicate balance for us all. Raising special needs children just makes that balance a little harder to achieve some days.