My joy of his acceptance

You never know what's going to bring that massive grin to your face.  You know the one I mean, the one you can't stop even when you try, where you think if you don't stop your cheeks might squash your eyes closed.   The best one's are those that catch you unawares.  That's exactly what happened to me this morning.

I don't want another additional needs child

I don't want another additional needs child. Are you horrified?  I would have been.

"Do you think we should have another?"

"I don't know."

"If we had another like Jane, then maybe.  But what if they were like Anthony... or David...or had greater difficulties?"

"I just don't know if we would could cope?"

"Me neither."

And here is no way to know if our next child could have difficulties until they did.  There is currently some agreement that autism is likely genetic but there is no medical type blood test or otherwise to see if your child has autism.  Autism is a diagnosis decided by a panel who look sat your child's difficulties and discuss whether these represent a triad of impairments that warrant an autism diagnosis.  There is no Non-Invasive Prenatal Testing (NIPT) for autism, although there may be one day.  Even if there was, whatever your view, I don't think I personally could choose between a baby with difficulties and a baby without.  This means, if we don't think we could cope with another child with autism or any other disabilities then the safest option is to not have anymore kids.

So that was it.   No more kids.  And despite my husband and I having a complete understanding of each other here (notice I've not even said who said what above) and being in agreement, I've felt a bit disappointed with this decision since.  I've always advocated that some of our children are 'different not less', but this whole situation felt like it was counteractive to my long standing belief. 

When Anthony was diagnosed with autism, there was very little said by the professionals on what to do next.   By the time David was diagnosed, we'd had a much better understanding of Anthony's autism and it's been fascinating to see how the condition differs in our beautiful boys.  Jane loves both her brothers and as they've growth we've also added ADHD and hypermobility to the list of things to think about on a daily basis.   It is true, there is a lack of autism awareness and no one will understand our autistic children like we do.  In many ways this means they miss out. As a family we are not put off by these challenges.  The boys have a variety of conditions but Anthony was still followed by David and then by Jane.  So if their difficulties didn't stop us then.. what's changed?

Having children or not, how many and when is all very personal.  Some people have large families, some wish for families and have difficulty having them.. some people have no desire for kids and end up with them anyway.  There is no right or wrong way, only what's right for you.  What could cause confusion or regret is the pressure to do something, society says or fear brought about by a lack of information.  But the only pressure my partner and I have is that which we put on ourselves.  We want to be good parents, and sometimes that means drawing a line with what we can cope with or what we think is best for our family.

Like many parents, bringing up our children may be the greatest achievement of my life. Yes, some of it has been difficult, but it's also been filled with immense joy.  The day Anthony was in a swimming gala, the day David first signed for a hug, the day of Jane's first Christmas show.  But all of them and the rest of our experiences make our family the fantastic entity it is.   I was feeling sad with our decision because I wouldn't be able to accompany another child through their life and experience these things again.  Worse, I felt it was my fault for concluding that we wouldn't cope.. and that's what had changed.

I've had experience of raising kids with autism, and ADHD and Hypermobility for that matter.  I know some days are difficult but I also know some days are filled with the kind of joy that makes you think your heart is going to burst.  Recently Autism has been highlighted through mainstream via media such as the BBC series, The A Word and last week there was a parliamentary debate in the House of Commons on Autism awareness.  It highlighted a general lack of understanding autism, not only from the everyday population, but health professionals and those in education. 

Like it or not therefore, having autism in the family can be a challenge.  My three kids could already be going to three different schools to meet their individual needs.  We have difficulty going out to some places because it's a two adults to three kids ratio and all the kids needs watching. Nevermind whether we can talk the dog with us or not.    I spent three hours on the phone the other day trying to find out why no-one was prepared to refer our son for the tests that everyone agreed he needed. Sometimes as a couple we feel we are spread to thin.

It was in the collapse on the sofa last night from what turned out to be a day of dramas that I turned things around in my head. 

My husband announced, "Chelsea have scored!"

"Great.." I said (nonchalantly rolling eyes)

I've little understanding for the following of football when you have no 'team' like my other half.  What difference does Chelsea scoring make to my life.... absolutely nothing.  Or so I thought.

Turns out that Chelsea scoring meant there was a lot of very happy people in Leicester.  A team that was nearly relegated last season has beaten the odds to come top of the league.  'History is being made' said the TV.  Apparently Leicester are the first new champions of the something cup in 38 years.  When I said they'd beaten the odds, I've been led to believe that you could have got 5000:1 on the chance that Leicester would have won the cup at the beginning of the season.  'Anything's possible...things can change," said the TV.

That's right I thought. Things can change.  Just because we sometimes feel spread a bit thin now doesn't mean we always will.  David may end up talking, Anthony may get his anxiety under control, Jane may ...well anything and you never know the dog may stop trying to escape the garden.

Just because we don't feel we can cope with another child now doesn't mean that I'm failing.  The time might come when we do... or maybe not. We may even adopt one of the many kids waiting for adoption who have additional needs.  After all we've got some experience there. Let's not get ahead of ourselves here though.  The point is that suddenly our decision felt better.  The future is not set.

Life changes and you can only go with what you've got at the moment.  It doesn't mean it will stay that way or that it will change how you expect.  My husband and I were not tongue tied at the idea of being tube-tied, neither of us were up for it. I may not be ready to draw the line under 'no more kids ever' right now, and I may or may not be in the future. Perhaps I just need to spend a bit more time here and hope the future will take care of itself.  After all... I've got that phone call to make, that medication to order, the dog to walk and the .........

Links
Our blog - Why I hope I would still have my kids

It's time to tell him

There are some things you never expect your children to say.

Anthony is crushing his forehead with his hands.  He's making a haunting noise that's a cross between a scream and a growl. And then he said, "Please, kill me, then make me again with a brain that works properly."

Sometimes I wonder if our son is aware of his difficulties.  Anthony has autism, ADHD and a bit of hypermobility and anxiety thrown in for good measure. He knows some things, like he finds it difficult to sit still and has someone help him at the school.  But this was the first time I've been stopped in my tracks by his awareness.

It was over something as simple as copying a sum from a screen onto a piece of paper.

Anthony was converting a picture sum into a column addition. He was doing the sums very well but after a short time started to struggle. His poor motor skills meant he wasn't always lining the numbers up correctly and he started to forget what he needed to do to work the sum out. "Ohhh mum, my brain and fingers are being very naughty," he said.  A few sums later and he was becoming annoyed and upset by his own inabilities.

"Kill me," he screamed.  "Please, kill me, then make me again with a brain that works properly."

Can you imagine?

I felt my heart thump in my chest, like a booming base drum.  Where was the next beat...?.  The world suddenly seemed in slow motion. I felt my eyes widen and glisten as my stomach shivered. Then I couldn't tell where my failing heart ended and my stomach started.  Oh son.  On the outside I held it together, inside I was a mess.

You see, Anthony's brain works differently as part of his autism.  He processes everything differently.  Sometimes this makes things more challenging and sometimes he sees things in a wonderful way that no one else does. Anthony has also been diagnosed with ADHD.  This is an added complication. Not only does his mind work differently, but then he also loses focus, making some tasks even more challenging.

Anthony knows he can copy sums.  He knows he can work out the answers.  He's learned to overcome difficulties with sensory input and seeing things differently.... and then his mind fails him again with concentration.  Please, give my kid a break, I thought.

Of course I hugged him, helped him focus and worked him through the sum.  I said he had done his sums very well and he could finish. No more homework for him tonight.  I was relieved, to say the least, when he told me he didn't want to die.  That he was just frustrated and being a literal thinker he was pretty sure the only way to get a new brain was to die first, and he didn't want that.  Perhaps I'll talk to him about neurosurgery later...much later.

We've always been in agreement that Anthony should know about his autism, ADHD etc when it seems right.  And we are now on the edge of labelling Anthony's conditions for him. He knows he has hypermobility. When the physiotherapist gave him exercises to do it made sense to tell him.  He says his knees are being silly. Perhaps it's no surprise that he thinks his brain is malfunctioning and being 'naughty'.  He has commented before that his brain is not doing as he asks.

I know we'll highlight all the good things about him.  It's not going to be a brand new thing, we've been drip feeding him the idea for a while. But I'm still extremely nervous.  I feel that thump... thump in my chest again just thinking about it.   Anthony's unexpected outburst means it's time for us to do what we've been expecting.  However he reacts, we'll be there to support him.  But it is time to tell him. It's time he had the opportunity to understand himself.

If you have stories about telling someone you love about a condition they have..please feel free to share your link.  Email me if you don't wish to use the comments box and I'll add your link for you.

Caution at the aquarium

It sounds strange but sometimes we have to go kiddie attractions without some of the kids. We go on a recce to see what's there. It's a way of surveying the place and seeing if it's something our kids are going to like or worse yet like too much.

Jane gets sad if she's made to leave something she likes. We'll get a sticky out bottom lip, that she does really well by the way. Anthony will simply scream and dance with excitement. David's the worst though when it comes to liking things too much.  He'll sign 'no' when it's time to leave and run off. He'll usually get over it as we give him notice that it will be time to leave but it's not that that's the 'challenging' part so much.

Let's take for example last weekend. David did not join the rest of us in our trip to the sea life centre. He was going to the local playground with his grandparents while my hubby, the kids and I went to the sea life centre at Chessington. It was full of beautiful creatures and features. Jane loved the Nemo / Dory combination tank and the walk in bubble. Anthony liked the shark tunnel and big fish. The sea lions are always popular.

David might not have seen these. Looking through glass or at things in a crowd seem to either not have enough or be too overwhelming on his sensory scale.  He'd be more interested in his iPad while the other kids were excited.  David's interest and our hazard would have been the big open Ray pool and deck. I'd bet money that he would have stripped naked and jumped in the pool. 

Funny? Try restraining a five year old hypermobile (that's super flexible to some of you) autistic boy who has it is in his head that he's supposed to be playing in the water! I love his freedom of thought. The way he sees water here as no different from the beach. The way he's not deterred by the fact no one else is going in. 

I looked about to see if there was a way to avoid the Ray pool on our next visit, but there wasn't. For David,  we'll wait just a little while until he can maybe either appreciate the tank fish or is  just a bit happier following our instructions. It's a fine line between a good day out and a wet one sometimes. But we will keep looking for activities David and the rest of the pack will love 'just the right amount'. And in the meantime we had fun at the sea life centre and David had fun at the playground. 

Links
Our blog - A ray of sunshine: autism in the playground 
Our blog - Racing clouds, David's delight 

External links 
National Autistic Society - Sensory information  

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#AccessibilityStories

Such small achievements that no one else notices - Anthony Skiing

Anthony needs extra help to participate in a lot of activities. When he was diagnosed with autism aged 4, we started to understand why Anthony found some things difficult. Why he had to put the coloured pencils back on their box in the same place, why he didn't seem happy with surprises on his birthday and why he couldn't focus in a nursery full of other children, loud sounds and bright lights. But that has never meant he can't try something new.  And when his Dad and I returned from Courchevel earlier this year, it sparked a new idea for him.

Hyper-what else?

Anthony has been tip-toe walking for as long as I can remember.  Whether it's running, jumping, climbing or walking, and whether it's at school, home or in the garden, Anthony does it on his toes.  We buy the toughest school boots available.  He bends them all and goes through the ball of them by the end of each term.  Anthony is very sensory seeking and it's long been thought that he enjoys the feeling of pressure this puts on his feet.  In the summer we took him to a trial trampolining class and noticed he wasn't able to point his toes up when they were stretching - in fact it didn't look like he could do it at all.