When the first sign is every bit as wonderful as the first word

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It was a day like any other. Often this is the way in life. Days come and days go and right in among what becomes everyday and ordinary, something quite amazing happens.

It was a Wednesday. That much I know.

I had dressed my son, made him breakfast and checked his school bag had everything in it he needed. Unlike other seven year olds he had no pencils, no homework or reading book and no snack in sight. His bag is full instead with wipes, change of clothes, spare nappies and his home/school diary (my lifeline of communication with his school life).

Communication is so vital for families like mine. We can not ask our child about their day, or listen to them read to us, and due to the physical distance from home there is so little contact with school staff. There is no regular coffee mornings, or weekly assemblies parents can attend and I never get to pick up my son at the school gate and chat to other parents.

This is the reality of children who, for whatever reason, can not attend their local mainstream school. It can be tough. It is the harsh reality of having a child who can not talk or who has communication difficulties.

While my brown eyed boy was never far from my thoughts, in real life he was actually half an hours drive away. And that day he was reaching a milestone that I had no idea about.

On Wednesday 20th January my son learned his first sign. For families like mine this is every bit as massive as the average child saying their first word. The beauty, the joy and the celebration is just as special. The moment deserves sharing and recording. Yet none of the baby books have a page to record the day your child first signed. What a precious moment they are missing out on.

I had no idea he had had such an amazing breakthrough in his development. Like so many parents who hear about their baby taking their first steps, or riding their bike for the first time and feel so devastated that someone else got to witness it before them, I too felt just as heartbroken.

The obstacles my son overcame to achieve this moment, the perseverance and dedication of staff in his school, the concentration required of my son, and the co-ordination skills required all worthy of celebrating on their own merit.

A whole new world of communication may just be beginning to open to us. He may finally have a voice.

It was a day like any other. That was until I read his school diary and I cried.

To me the first day he signed is every bit as wonderful and significant as the first time any child speaks.

It is precious. It is beautiful. And it is worthy of recording.

You see days come, and days go, and sometimes right in the middle of the ordinary something quite amazing happens.

On Wednesday 20th January Isaac signed for the first time.

**this post originally appeared on firefly** http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-the-first-sign-is-as-good-as-the-first-word#.VreyK3LXVfo.facebook

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No-one today should be caring alone

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No-one today should be caring alone

Middle aged man, commuting by train
Thoughts turn to his sister he left crying in pain
He’s off to a meeting, while she struggles at home
Both of them left to face it alone

Teenage mum struggling, pushing a chair
The child is yelling, people just stare
She is begging for help as she picks up the phone
She cares for her child, but does it alone

The couple at the cafe, sharing their tea
One of them lost yet no-one can see
He lives in the past, a mind not his own
Forgetting her name, they both grieve alone

The parents of a child who may never walk
They sing to a baby who still can not talk
Kissing a hand, though it’s all skin and bone
Everyday precious, weeping alone

Little eight year old, should be out to play
Instead she is feeding her dad everyday
Doing his care as the nurses have shown
With no one to tell her she isn’t alone

The next door neighbour, bringing some meals
Staying and listening to ask how she feels
Filling out forms while letting her moan
Determined his friend should not feel alone

The father sitting at the hospital bed
Digesting the words that the doctor just said
A new diagnosis, his mind has been thrown
Needing support so he isn’t alone

So many people with stories to tell
Caring for others, and doing it well
Yet they all need support, to know they are not on their own
Because no-one today should be caring alone.

Miriam Gwynne

The day he chose his own birthday present

imageI had waited for this day for many years.

He has yet to tell me what he would like for Christmas or a birthday. He has yet to speak, period. He isn’t able to look through a toy catalogue and mark the things he likes. He has no concept of adverts and no interest in toy shops other than the automatic doors or the lift.

Birthdays and Christmas are therefore hard. We basically guess what he might like based on observation and knowledge of his sensory preferences. Sometimes we get it right. More often than not we completely waste our money on things he never goes near.

If we find it hard how much harder do relatives and friends find buying for a child who never plays with toys?

So at his birthday party this year lots of people opted to give him money. And I totally understood why.

But that left me with an even bigger problem: now we HAVE to do something and get something for him.

I was stuck.

So in desperation I decided to venture into a shop with him. That meant pushing him beyond his comfort zone of the automatic doors at the entrance. It meant picking a time when the shop would be most quiet, not only in terms of people but also in terms of tannoy announcements, music, and noisy technology. It meant risking a huge public meltdown.

I tried to prepare him. It’s not like I can tell him he has birthday money and he can come choose a toy. He has no concept of what a birthday is let alone what money is. I am not entirely sure he even realises what a shop is? So I kept it simple and told him he was coming somewhere special with mummy to get something he would really like.

He loves his mummy does that boy.

So I searched for his socks and shoes and lifted him into the car. At seven this gets harder by the day. I took him to a shop we have been to many times before. The whole journey I kept repeating that today we were going into the shop and he could chose himself something nice. As I glanced at him flapping in the mirror I thought for a moment he may actually have understood me.

I think I was right.

He took my hand. He walked right through those beloved doors and he smiled and laughed and flapped like he had just won a coveted prize.

Then he stopped right where he was. He picked something off the shelf and he took my hand and dragged me to the checkout.

I was so utterly in love with him. I was bursting with pride! I wanted to shout about this magical achievement to the ends of the world.

My son has just chosen his own birthday present!

I had no need to worry about the cost. Or wether he needed batteries. Or even if I needed scissors or a screwdriver to get through the packaging. I never even needed to purchase a carrier bag!

He held his prized possession all the way home in the car, turning it, licking it, and smiling at it.

He knew he had chosen well. And so did I.

I actually wonder why I never thought of this before…

After all surely every seven year old wants a tin of baked beans for their birthday present!

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The seven hurtful things people say about my child with an eating disorder

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My beautiful blue eyed daughter has recently been diagnosed with an eating disorder at the tender age of seven. While some people have been very supportive others have said some things that really hurt. Here are the most hurtful things I have been told so far:

1. She will eat when she is hungry!
No she will not. If she did she would not have been diagnosed with an eating disorder. She doesn’t ask for food or drink and is not aware when she is hungry. She would go all day without drinking or eating and not even realise.

2. That is what happens when you give in to fussy children!
So is giving my daughter the food she will actually eat and keeping her alive giving in to her? So the fact she would starve herself to the point of requiring medical attention should be ignored just so that I don’t ‘give in’ to her? In that case when you next go to a restaurant or take away don’t bother looking through the menu at what you would like just take whatever they give you and eat it! There is a clear distinction between a child with fussy eating, a child with major sensory issues and a child with a complex eating disorder.

3. Maybe if you let her make it she would eat it.
My daughter enjoys making cakes and dinners and puddings. She enjoys shopping for ingredients and following recipes. But she still refuses to eat it. There is a big difference between cooking and eating. While some children’s issues include handling, mixing and cooking food, my daughter will happily participate in these activities until you ask anything to pass her mouth. I wish I could explain why that is, but I can’t.

4. Can’t you just force feed her?
That seems like abuse to me. Yes there have been times where I have had to almost force vital medications into her and spoon feed her yoghurt or pureed fruit just to get something inside her. But force feeding her would not only have a huge phycological impact on her metal wellbeing but it would also send her the message that she has no control or choice. When I tried feeding her before she would simply vomit it back up. She needs to be able to control what goes inside her mouth and learn that food is good. I need to teach her that eating is positive and not a forced issue that creates distrust and upset.

5. You should try taking cookery classes. Maybe she just doesn’t like your cooking?
This is implying that I am the cause of my child’s mental disorder. Thank you for that! Are you aware I have another child who not only loves my cooking but often wants more and eats vegetables, fruit, salad and a good range of meats and carbohydrates? Have you seen the meals I make for my children? I don’t need guilt heaped on me on top of the stress I already have. That only makes things worse.

6. They never had such rubbish in my days. You just ate what was put in front of you when I was young.
I am so glad you were able to eat the food you were given. I am very confident there would have been children and adults around in ‘your day’ who also had eating disorders you just may not have been aware of them. As awareness grows and more people are willing to talk about these things the more it may ‘appear’ to increase, though I believe it has always been there.

7. Let me have her for a week and I will cure her.
Thank you once again for making me feel inferior and inadequate. What you may not realise is that I would never put my daughter through the stress and anxiety of living with anyone else for a week. Her issues run deep and she requires patience, understanding and love. I would love one day for her to be ‘cured’ but until then we work daily with psychologists, her school, paediatricians and a dietician to monitor her mental well being and physical health. Would you manage to juggle all of that?

Eating disorders and mental health in young children are so often misunderstood. Every single day is hard to watch my beautiful baby struggle with something as basic as eating. It is heartbreaking to watch her lose weight. It is scary thinking of the future. She needs support and understanding, not judgement or pressure.

So what could you say to me instead?

How about ‘do you fancy a coffee and a chat?’ Or simply celebrate the good days with me when she perhaps manages her first ever packet of crisps or half of a banana?
We are not going anywhere. And sadly neither is her eating disorder.
Whatever the future holds I will be right there holding my daughters hand. We will get through this together.