Sometimes a simple yes or no is enough

imageMy son doesn’t speak. But ever single day I speak to him. And I hope.
I tell him what we are doing, where we are going and who we will meet. He may have difficulties communicating but his understanding is improving all the time.
He is 7 and about 7 months ago he developed a very precious skill of being able to shake his head to communicate ‘no’. It was a moment of breakthrough. Prior to this we had screaming which could mean anything from yes, no or leave me alone. You could take you pick but if you were wrong the screaming just intensified.

He was so frustrated. And so was I.

Sometimes we just need a simple yes or no answer. That is often just enough.

I have mastered the art of understanding my precious son. I have had the privilege of seven years of learning his ways, his body language and his expressions. I can see his tears before the first drop falls from his eyes and I know what will make him laugh before any sound emits from his mouth. With patience we taught him to tap our hands to make a choice but we still could not get a consistent yes or no for simple questions. He could choose between two things. Would you like mashed potato or chips? Would you like to go to the park or swimming? But when faced with him fussing we could never get a clear answer to something as simple as would you like something to eat? Are you in pain?

Those were the times when just a simple yes or no would help us all so much.

This weekend as we went about our business I looked back at my children in the car and reminded them both we were on our way to the hairdressers to get their hair cuts. As I turned again to face the front I heard something that made me jump. I had just heard a voice I never ever dreamed I would ever hear! It was loud, unexpected and forceful. It was beautiful, perfect and simple. My son shouted at us! He shouted ‘no’! Thank God I wasn’t driving or we may have crashed. As I turned to look at my wonderful boy my heart missed a beat. I was smiling, yet crying. Rejoicing, yet weeping.

He just said NO! It was enough!

No doubt I should have not put him through the stress of that hair cut having clearly heard him voice his objection. But believe me when I say it badly needed done. I needed to see his stunning big brown eyes and he needed to have better vision without seeing nothing but his long brown locks. He hated it. But he survived.

Back home I longed to be able to share that moment with so many of you who follow his journey. So I tried to get him to say it again. I asked that poor boy so many questions willing him to prove he could do it again. He didn’t.

He actually went one better!

Dressed in only his pyjamas I asked him if he liked the rain. (He hates it!) and he made a sound. It was indistinguishable. I asked if he wanted his coat on (he hates his coat!) and again he made a noise but it was more of a grunt. I was determined! I asked him one final question: would you like to go out? And clear as anything he stood up, headed to the door and said ‘yeah’.

He said ‘yeah’!!!

Sometimes a simple yes or no is enough.

Do you know how long I have wanted to hear just yes or no? With Isaac that has been seven years. But with so many other things in life it has taken even longer. When I struggled with infertility for 9 years all I wanted was a yes or no answer to the question, would I have children? When I was told my children had autism I wanted a yes or no answer to questions like will they ever get a job?, will they live independently? When my boy was diagnosed with neurofibromatosis I needed a yes or no answer to will be need medical treatment and be ok? Now I want to ask professionals things like will my son ever be toilet trained? Will he ever be able to have a conversation with me? Will he ever have friends? Some days I want to ask God, are you listening?

I want to know so much. I long for so much. I am believing for so much.

But sometimes just a simple yes or no is enough to keep me going for a very long time.

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Preparing for ‘The talk’

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It’s always when you are busy that children suddenly choose a moment to spring something on you, and tonight was no different. I was right in the middle of preparing tea for the kids when my six year old walks into the kitchen, her voice tired and slightly emotional:
“Do you know something mum, me and my special friend, I just think there is something different about us…”

Oh boy! It’s just an ordinary Wednesday night in late August. I am cooking dinner and thinking about homework we will be doing together soon after. My mind is on mashed potato and school uniform for tomorrow and now I need to urgently think how to respond to a statement I have been waiting for for a while now.

My daughter has autism and she attends a mainstream school. Her best friend is on the cusp of being diagnosed too though they are both very different.

How to I approach this? I want her to know she is unique and wonderful, but also recognise that she finds some things more of a challenge. I need to keep it at a level a six year old can understand without babying her or over simplifying a very complex neurological condition.

I must remember to talk about social differences, sensory differences, understanding language differently, rigid thinking, repetitive movements….my mind is racing ahead now…

Oh, maybe I should text her friends mum and warn her or even chat to her about how we approach this. The girls are bound to talk tomorrow and I owe it to my friend to prepare her for what her daughter may discuss. Maybe I should delay ‘the talk’ until the girls are together? Yes, maybe we should be doing this together so they both understand and hear the same thing?

Actually, maybe I should wait until my son is not distracting my attention too. He has classic autism so I must remember to talk about that side too. But that might confuse her? She only commented that her and her friend were ‘different’ so maybe she hasn’t realised how different her twin brother is yet..

I finish dishing up dinner to find her right behind me sitting at the table watching and waiting. I go get her brother and give them their dinner and decide ‘the talk’ can wait another moment while I switch the kettle on. I have a feeling I could do with some caffeine to help me.

She hasn’t said anything else since that statement. My drink is now ready and with my mind still whizzing and my heart beating fast I decide I can not delay this any longer.

I need to go carefully. I need to watch my words and check her understanding. She might be ready for this but I am not sure I am…

And go!

“Right sweetie, what was it you were saying about you and your friend being different…”

Sip of caffeine and a short pause later…

“Well I was just thinking mummy…you know at playtime, well me and my friend like red crisps for snack and everyone else has something different”

And breathe….

And with that simple fact ‘the talk’ once again got put to the side for another day.

That day will come though. And I need to be ready. I just hope I don’t have fish fingers and baked beans cooking the next time she asks…

When other people get involved

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The uniforms are bought, the bags packed, and the children prepared to once again start a new term at school. It is with great anxiety and fear that once again I release my children into the hands of others to be looked after and educated for six hours a day, five days a week.

For the last seven and a half weeks I have pretty much been with them both 24/7 and even though that has brought pressure and stress at times, it has also been a relief to not have to deal with other people and schools for a while.

Now that is all about to end.

Once again other people are about to get involved in my life.

When other people get involved…

1. It is easy to feel like a failure.
While I know my children have thrived this summer under my care there will be teachers and therapists within my children’s schools who will only see the fact that their development has not been stretched perhaps as much as the would have liked, or they have not been challenged educationally or encouraged to socialise with others their own age enough.
Then there is the fact other families will stand in the school playground boasting of holidays abroad, play dates with friends and new skills their children mastered over the summer which my children may never achieve.
Being around other children the same age as mine and seeing what they can do and say has a way of making me feel like an utter failure within minutes, even if unintended.

2. Everything suddenly becomes a big stress.
In summer we ate when we were hungry, if we wanted to have pizza for lunch instead of dinner we did. We ate out now and again, we took packed lunches and went out for day trips and we had fish and chips at the end of a busy day. But now my children are returning to school where one barely eats and drinks and now food will become a huge stress again.
Now the professionals are back involved there is also an expectation to ‘move the children on’ in areas they have become stuck at and we are expected to follow “proven” methods or be criticised even when these may not be right for our child. Stress!

3. The pressure to perform becomes huge.
Did anyone care if my son wore an un-ironed t-shirt last week? Returning to school brings with it a pressure to have children dressed smartly, in uniform, and arriving on time, having eaten healthily and slept well. All of those things are major challenges for my children with sleep difficulties, sensory issues, limited diets and no understanding of time. Forgetting homework, leaving the packed lunch at home or not remembering PE kit has you instantly marked down as a terrible mother and raises my daughters anxiety to a level that makes her ill. There is pressure to keep up with the other children in the class and do weekly activities too. Having other people involved in caring for your children puts so much pressure on us all.

4. I lose knowledge that is vital to communicate with my children.
My son is non verbal and both my children have social and communication difficulties (autism). Being with them all summer has meant we have learnt to understand each other. My son would only need to find a photograph to show me and I would immediately know what he was trying to communicate because I was there with him and I know what he enjoyed. When other people get involved I lose that vital connection and no school diary or ten second talker can make up for the fact I am not with my child and therefore I have no knowledge of what he is trying to communicate. He may have heard a song at school he wants to hear again and I am expected to just ‘know’ and because I don’t we have hours of self harming, frustration and upset all round.
Neither of my children can properly communicate to others when they are hurt or where. Neither will adequately communicate when personal needs require to be met or that a food may make them feel sick. This is the bit I hate: that not knowing and having missing pieces that they can not explain to me and I have no means of working out.

I know there are some advantages of having other people involved though. It is important my children become more flexible and less rigid in insisting only I can meet their needs. They also do need to learn independence even if they will require support throughout their life. There is also the fact that having some professional involvement can actually help by bringing new ideas, support me and help access resources that can make a difference. We just need to learn to communicate, trust and work together.

I need to let go. After almost eight weeks with my children that is hard. But for my children’s sake and my own it really is important…

To let other people get involved.

Am I crazy buying my 6 year old a smart phone for his birthday?

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It seems the shop assistant thinks so. When I payed for the item and told him it was for a six year old’s birthday he gave me that ‘look’. You know that look that shows he thinks you are clearly deluded and should he be calling the doctor on you? I know that look too well.

So I am sitting here asking myself what is wrong with a smart phone for my six year old?

I KNOW he will love it.

He will be able to work it way better than some adults I know.

He will be able to teach others to work it.

It will amuse him for hours and I already know it will be the highlight of his birthday.

It has an incredible ability to help him learn.

It is portable so can be used in the car to keep him occupied on long journeys.

Provided we limit the amount of time he is on it everyday it should not cost us too much money.

He will be the envy of his school friends.

But most of all it will probably give me some quiet time where he will sit alone and play.

I will be judged. I know that. I am used to that. And the same people will also judge the fact he is also getting a CD player too. He broke his other one dropping it down the stairs so like all good parents we are just replacing it and saying nothing. No sitting on the naughty step. No time out. We just replace it because he liked it. He was so upset about it after all and no-one likes to see their child upset. I never even had him ask for a new one. He just knows he will get a new one soon.

So you probably think he is spoiled. And that I have more money than sense. Some people may even be calling me unkind things by now.

So what if I told you he dropped his CD player when he was at the top of the stairs because he had a seizure? What if I told you he hasn’t asked for a new one because he can’t speak?

Here is the CD player in question:

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It is designed to be played with by young toddlers. My almost six year old is so behind developmentally due to neurofibromatosis type 1, autism and global developmental delay that he is only just starting to play with toys like this.

And here is the smart phone the shop assistant was so shocked I was buying for a child his age:

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A baby toy!

It lights up, it plays music and it gives instant feedback. Just his sort of toy really.

It’s easy to judge when you don’t have all the facts.

Am I crazy buying my six year old a smart phone for his birthday? When you think he can’t speak, is still in nappies, can’t dress himself and still eats with his fingers…baby toys and toddler toys are exactly what he needs.

In fact here he is on his first birthday having no idea how to play with a toy he received:

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20140217-224411.jpg5 years later he would just love this toy again. I wonder if there are any keyboards with dancing drumming bears on sale…

The crazy thing was I threw out all his baby toys and now I am buying them again five years later. At least now he might play with them.

Have you any idea how excited I would be if my six year old actually asked for and was able to use a REAL smart phone?

Call me crazy but if that happened I would be right back at that store buying him one tomorrow!