Sometimes autism wins…

You can turn anything into a positive if you try hard enough. But however you look at it, somedays autism wins.

For example it was so easy to pack my sons clothes for a holiday as all he will wear is his red school jumpers. I can even joke that he is saving me money buying him holiday clothes. I laugh about the fact he is slowly turning those jumpers into pull overs as he eats his way up the sleeves. But that joking hides the sorrow in my heart that every time I see him in that school jumper I realise that once again autism has won. If you were scoring the days then before anyone has even had breakfast in my house it is clear that autism is on the winning side. I have to choose my battles. And right now this one is just beating me. So I turn it into a positive. Autism might win the battle, but one day I might win the war. And if I can get him to do more things, be a little more flexible during the day, or wait without screaming then autism can win the red jumper for another day.

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You get used to pushing a stroller around and you actually forget sometimes that the ‘baby’ is actually almost 6, until someone looks at you like you have horns in your head. Hey, I say to people, having a buggy makes carrying bags much easier as you can hook them over the handle bars. Pushing a buggy gives you something to lean on when you are tired, and stops you having to drag a child along kicking and screaming. I have to dwell on the positive. Because the fact that this week I took both children on a train ride into a city centre and had to put both my five year olds into buggies in order to achieve anything could really get me down. It is another sign that this week autism won. It was the only way my family could go anywhere safely. It was the only way the children could cope with the noises, crowds, walking distance and strange smells. It made boarding and alighting the trains very hard, it made getting over the bridge to the other side to get the car like a mountaineering expedition, and it filled the car boot before we even tried to get a bag in. But although autism won, it was actually a win for us as we managed a day trip out and we all had a good day.

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So we tried to go out again. This time we tried a farm. One child loved it. The other lasted a few minutes before having to be carried back to the car. Autism prevented me even getting pics of the child who was loving it.

We moved on to an indoor adventure centre. One loved the toy shop and wanted something from the cafe. The other was so preoccupied with the lift and automatic doors that one parent missed out yet again. Sometimes autism wins…

We’d packed a picnic so we found a lovely park by a castle to sit on a bench and eat. One was so excited. The other could see a macdonalds at the bottom of the hill and that was the end of that. Why would anyone eat cold sandwiches and fruit when there are hot fries and nuggets at the bottom of the hill? It seems at times like this we are fast losing the war. So many battles…which ones to fight, which ones do we just ride out?

Never judge a war based only on what you see at first glance. It might seem like autism is winning but in actual fact we are making progress.

This week the children have both thrown toys for granny’s dog. They have played with and interacted with something other than ipads and trains.

We have had fish and chips outside watching ducks at a pond.

We have been for walks and seen sheep and cows as a family.

We have even managed to eat out at a buffet restaurant.

One of the children ate chips for the very first time.

We are not allowing autism to keep us at home during the summer holidays.

Autism, you might think you are winning because the children are still in nappies. You might think you are winning because one still can’t talk. You might think you are winning when we abandon plans and try something else. You might think you have won the war because we let the boy wear a red jumper everyday.

But don’t be fooled autism…

Sometimes autism wins…

And sometimes we laugh and smile and have fun like it never even exists. It’s all about being in it for the long hall. The war isn’t over yet…and the summer holidays have only been going for a week!

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I blogged, you shared and together we won!

Over 1200 read about my boy being denied a school placement to meet his needs. So it is only right that the same people get to hear what happened today.

We won!

And here’s the details:

We had the letter arrive to say our placing request for a local special needs school had been declined on the legal grounds that the school would need to employ another teacher. To you and I that means the school is full.

We had also asked for the original decision to place him in a unit within a very busy mainstream to be reviewed. The review also came back as the original decision being upheld.

So here we were with the following options:

1. Take the council to tribunal through the summer. We were very very unlikely to win a tribunal if the school is full. 

2. Consider a late deferral and hope to find a suitable school next year. there are only two special needs schools for our whole area. We would have had to go through the whole process next year again with no guarantee of getting it right again.

3. Home school.

4. Do something totally radical and ask strangers to help.

5. Send him to the school they wanted (Not a chance!)

I must be crazy but options 1-3 (let’s rule out option 5 straight away) did not appeal and as we had nothing to lose I wrote my usual weekly blog. And put it on my usual social media outlets. Except this time I begged people to share it. And ask others to share it. Get it out there. Make it public. 

So I blogged. And you shared.

And I emailed the press. Then I called the council. And they got worried. So I sent them the blog too. 

And a few hours later they called to say they wanted to talk. Great. I was delighted to listen. And an arrangement was formed. We could still not have a place in our local special needs school but we COULD have a place in the other school. In other words: WE WON!!!!!

So can I say THANK YOU!

Thank you for playing your part in changing a decision that would have been detrimental to the health and welfare of my son. Thank you for being part of our miracle. Thank you for reading, sharing, talking about it and praying. Thank you for caring enough about a little 4 year old boy you didn’t know. 

Thank you for changing this boy’s future.

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I blogged, you shared and together we won! Please feel free to celebrate with me. He has his first induction this Wednesday!!!

Hallelujah.

 

Fighting on

It has been a week of fighting this week. The children have been fighting off colds and coughs, and as well as fighting off the same germs as them I have been fighting with the local authority and my own emotions.

We heard from the local council this week regarding which school they believe to be best placed to suits my sons needs. We already knew from dealings with them last week that we would not be receiving the school we wanted yet I still found the tears rolling down my cheeks when we opened the letter. The placement was for a school we had never expected and in fact one which had even been discussed for his twin sister as a possibility for next year! After the initial shock and anger we called the school to visit and called the council to discuss why this option had been chosen.

It would have been nice to have had more time to get over the shock but deadlines on the letter stated that we had just 14 days to decide if we were accepting or declining this placement and the letter arrived just 2 days before the schools closed for over a fortnight for Easter holidays! I always try to see the positive side to things but even I had to agree that the timing of this letter was deliberate.

Anyway, we have now duly visited the councils placement choice for MY baby and as we expected it is highly unsuitable. The classroom is upstairs and Isaac can not yet climb or descend stairs safely without one to one support. He would not be receiving one to one support in the classroom either  and would also be expected to have lunch in the dining room with almost 300 mainstream children. The school do not have an on site nurse able to check him over in the event of a fall or injury and he would be expected to access the playground with all the other mainstream children. None of these are things that Isaac would be able to cope with and so we have appealed the decision and have requested the school of our choice.

I have had to force myself to fight. I hate fighting but when you don’t have a peace about something you just have to fight for what you believe to be the right thing.

And if there is one thing I can find the strength to fight for it is my babies. If you plant seeds in the wrong environment they will not grow or flourish. And if animals are reared in the wrong location they do not learn the skills needed to survive. How much more with children? In order to learn my children need to feel safe, loved, secure and happy. And as a parent it is my responsibility to ensure they have the right learning environment to grow and thrive.

I have even thought of home schooling. But I know as much as I love my son with all my heart and strength I do not possess the necessary skills to break through his autism and severe learning difficulties. I have been trying for the last 4 and a half years. It has taken years just to get fleeting eye contact. I spent years trying to get him to learn colours and shapes and numbers and enjoy the challenge of a simple shape sorter. He still thinks brute force will help get the circle into the square hole! And he still chews everything in sight. And we still have no language. He is still in nappies. And dressing him is still a huge fight.

In fact so many things have become a fight. The fight to get him to eat healthy and not just live off chocolate. A fight to change every nappy. A fight to get him to sleep at night. A fight to keep him asleep. And sadly a fight to get his needs met by professionals.

I’m weary of fighting this week. Weary of the battles daily.

But he is my baby. My longed for child. My reason for carrying on. I look in his face and know the fight is worthwhile. Because he is worthwhile.

And so I’m fighting on.