Little jobs

Even though J has little awareness and understanding, I have recently started to encourage him to do little jobs round the house for me.
Very basic things, but they are helpful to me and it also shows his middle brother O that helping is expected within a family.
For example I will ask him to put his clothes away in the blue basket. This is my laundry basket. He always puts his clothes and socks in here when he changes. I ask him to bring the whole basket down to me as well so I can put the washing on in the machine.
Another job is closing the upstairs doors shut when we all go out. This is because the dogs are little monkeys and will go into the bedrooms or upstairs bathroom and ransack it in anyway they can.
He gets me plates and cups out when I am making dinner and he collects them up to put in the dishwasher when he's finished.
I find this also gives us positive interaction together, with praise and reward giving him a confidence boost.

Acceptance of your child who has special needs usually takes time.
A few day,months or even years to finally reach the point where you stop thinking you can change them with wishes and prayers, if onlys, and even denial.
I think for J it took me a few months. This was after the official diagnosis, not the hurried one given after a very brief first meeting.
I did have a lot of the 'if onlys' and wasted my emotions on winding myself up over lots of issues that I felt I should have stopped happening (as mentioned in the post about the birth).
I can honestly say that for a long time now I have not had any thoughts of trying to turn back time, think how I could have done it differently, or torturing myself with guilt.
I even look ahead to how J may be as an old man - shuffling along, walking stick as an aid, the odd bit of hand flapping, random shouting out of "cola chips", trying to steal someones beer from their table, and watching Bear in the Big Blue House on DVD (or whatever they have invented then).

With W, J's youngest brother, I have been able to deal and accept his disability a lot easier and quicker.
My only issue really has been as to why we have been chosen to have another child with a disability, and one that is not related to J's condition.
I am sure some will assume it must be something I did or took during pregnancy. But I was tee-total (even though you are allowed small amounts), never smoked, took the pregnancy vitamin and mineral tablets, never touched drugs (legal or illegal, apart from paracetamol which is allowed) and didn't have x rays or any procedures like that.
Because of J, I am set up, prepared and ready to fight for W's rights to make his life amazing, enriched, fulfilling, and never second best.

With W's disability there is so much still to learn and as there is no cure, just like J's autism, the future could bring about amazing new discoveries which could make the symptoms far less, or even bring about a cure.
For W a cure would mean his eyes would stop moving uncontrollably and his sight would become clear and more far reaching.
For J it would mean a whole new world opening up for him.
Quite how J and other autistic people would deal with being cured I do not know. A scene from the Robin Williams film Awakenings always makes me cry. The bit where the drug he has discovered brings the awake but comatose patients out of their silence and into the regular world.
Would J suddenly chat away to me, telling me of what it was like for him to be locked in his own little world? Would he be freaked out by the new sensations and experiences of emotions?
All I do know is this - scientists are always trying to solve illnesses and disabilities, and one day they will either find a cure or a way to prevent it.

For now I am happy to accept J for what and who he is. Yes he is hard work. Yes it is frustrating trying to navigate the endless dead ends and obstacles put up by local authorities. Yes I do worry for his future.
But, I do not wish his life away hoping on a cure.

My life

I never thought my life would be like this.
I always wanted children. A husband. A big house (not too big as I hate housework). A dog or two. Nothing too Stepford mind, just a fairy tale of dreams.
I wanted to be the traditional stay at home mum who cooks healthy, nutritional meals, has not one speck of dust or dirt on any surface, wears pretty, feminine clothes, has glossy shiny hair and eyes that sparkle with pride at the array of drawings adorning my fridge and kitchen walls.
Out of that dream I have managed to achieve one of them. The rest have fallen by the wayside, along with my beauty sleep, my patience, my svelte size 10 frame, and my dreams of having my child grow up to become independent and creating his own family.

What do I see when I look in the mirror? Well as I only look fleetingly as I cannot stand what looks back at me, I assess I am washed out, tired, stressed, lined, and in need of a few more months (make that years) of salad.

Can I blame my situation though? Is it too easy for me to shrug and say it is because of my child's special needs that I am like this?
Yes it is.

I used to be vibrant and exciting. I tend to get excited nowadays when I see a double bill of Gavin and Stacey is on G.O.L.D.

However, whatever I feel like or look like, I always know that my children love me just the way I am. They don't judge or tell me to be a better mum. They love me and my big cuddles, silly voices, and never ending support and encouragement.

J never judges. Unlike 'normal' children he will not grow up and become cynical of the world, or develop hatred and dislike of those different to him.
He will always live in his bubble. His bubble is a safe world to him.
He will have innocence and pure honesty, and his desires will be simple.

I just have to hope I can still be the forthright mum he needs me to be in years to come. I think I can pretty much guarantee my middle son O will step into my shoes if needs be, if his noisy, shouty, go get em attitude at the age of 4 years is anything to go by!

.........................................................................................

Just something I came up with just now, probably rubbish, but hey ho!

Is this it?
Is this my life?
Day in day out,
Yet more strife.

Just another mum,
Another room to clean,
Being the biggest presence in the house,
But never being seen

How far have I come
In living the dream
The childhood fantasy
That ran out of steam

If I sit here wishing
For days gone by
Will I miss the ones coming
Because I didn’t try

To see what is here
Is more than some get
That my life is not stone
It is not set

Time may slip by
In whispers of sand
But this is my life
That I hold in my hand

To cherish that bond
The one between child
The one that a mother
Can never hide

Be still my thoughts
Of a life that is not this
Because all that I have
I really would miss

Six years ago

On the 11th August 2004 it was noted by the health visitor at J's two year check that I was worried about his speech and language and his hearing.
I have just found his book with all his development and charts in and there was her entry asking for a referral to the specialists.
It seems so long ago in one respect and not that long ago in another, if you can understand that?

It makes me sad to think back to those times. Times when we thought it wasn't that serious and that with a little intervention it would all right itself.
I can remember attending our very first speech therapy session.
It took place in a large surgery and I lined up with several other parents outside a room.
Inside the room our children had to sit around an oblong table, on child seats, whilst the adults sat around them.
From the off, J did not want to sit still. He tried to go under the table and disappear.
The therapist went round each child asking them to copy her mouth shape and pronunciation of a word.
This was lost on J.
She asked me to keep him under control so I sat him on my lap.
He could not have cared less about her and her mouth shape. He wasn't looking at her and wanted to escape and hide.
The other children nearly all complied with her request however.

It only now seems a typical trait of autism and learning difficulties that J could not understand her request and was not being naughty in ignoring her, but just couldn't comply as it was beyond his comprehension.

To be honest, I never really thought he would gain much from some woman creating a fish impression with her lips and over pronouncing "baaaaalllllloooooonnn".
His S&L therapy has always been, to this day, very hit and miss. I no longer take a part of it as it occurs during his school day, but even the S&L therapist through his schooling has given up as I found out, by chance, that she had ended dealings with him.
I was not told of this at the time and only found out via someone else who informed me it had ceased a good six months prior!
A little irony, but perhaps the S&L therapist could have communicated this to me directly!