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.

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.

Cheery after chess, autism and games

Clubs are a bit hit and miss at school. We've found that after school ones seem to be a bit too much for Anthony. As a boy with ASD, ADHD and hypermobility, the sports ones require too much information processing and a lot of the clubs are sports related. Anthony was until Christmas only enrolled in a lunchtime computer club. 

Last term, all the Year 3 classes started playing chess on a Wednesday afternoon. At first I was a unsure how Anthony would react to chess.  It can seem a bit complicated and requires a lot of focus. However it turned out that rules and systems worked well for him. He totally got chess.  Most of the time he played with his teaching assistants but he started to request it at reward time. So, when the club renewal came round, I enrolled him in the Chess Club. 

He seemed keen and he received a chess set as a present for Christmas. We've had a few games but mostly they have been lessons really as we help Anthony realise what will happen next on the board. He's quite keen on using his queen a lot. He says it's because it's such a strong piece. But then he often looses her early in the game. A few times at home this has ended in tears and I wondered whether Chess Club was going to be a disaster. Mostly I was keen to ensure that he had lost a few times with me so I could see his reaction.  This way I could help him cope with loosing.  

When the day came. Anthony's teaching assistant took him to the club at lunchtime and left after a few minutes. When I collected him from school, she grabbed me before Anthony came to the door to tell me that he'd lost both his games.

My heart sank and I was prepared for the worst, but I needn't have been. He was almost pleased about it. "I'm getting lots of experience of chess and I'm seeing what others do to win." he said. 

My son may not be the king of the Chess Club but he's no pawn either.

Links
Our Blog - Mummification mishaps - autism and dressing up at school

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The day I hid I had kids with disabilities

It can be difficult to treat yourself when your kids have disabilities.  It's simply difficult to leave our kids with anyone so getting time to go to a spa for a treatment is fairly rare.  Sometimes the hubby and I get time out by ourselves, and on a special occasion,  I may even spend that time with just me.   And that's just what happened when I recently spent my spa voucher I got as a gift.

To the boy who showed interest in my son's special interest

This post has been featured on The Mighty Site.

You wrote him a short note saying you thought karting sounded interesting and could he tell you about it. All we can say is thank you.  Thank you for giving Anthony the opportunity to write. Thank you for providing him with motivation.  Thank you for allowing him to show what he knows.  Thank you for giving him confidence in himself.  Thank you for showing him someone cares about what he thinks.

WonderfulWednesday: World Down's Syndrome Day WDSD17

This week's wonderful Wednesday share includes some lovely posts and pieces about World Down's Syndrome Day.

Five simple overlooked expenses linked to having our autistic kids

A quick search online will reveal a that there's plenty of expensive equipment that we could buy for our autistic boys. But the truth is that some of their autistic traits have some easily overlooked ways of costing money.

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.

Share your #madeupmilestones

We may not all travel the same path or at the same speed but we are all on a journey. Be proud and share your #madeupmilestones with me.   I was inspired by Toni who writes at Gym Bunny Mummy, and her emotional piece about her son missing milestones. Her story is a common one and one we have definitely experienced.

Keynote exert: As a SEND parent

At the end of November I gave a keynote speech to Special Education Needs and Disabilities professionals in London.  Here I'm sharing exerts from the speech on what do we as SEND parents want? Today, I share part of the setting I gave in my speech.. being a SEND parent. I'd love your comments on what you'd share about being a parent.

WonderfulWednesday: When Grandparents get it via @CatTrampoline

This week's wonderful Wednesday share is a status update from Cat on a Trampoline's facebook page. I loved this.

WonderfulWednesday: His own milestones

This week's wonderful Wednesday share is from Someone's Mum and is called His Own Milestones and is about her son finally managing to pull off his sock. Something that seems so simple for many but for someone with autism can take hours of learning and practice.

Favourite Friday: Its time to tell him

Last week's favourite post had thousands of hits.  For us it answered the question many parents with autistic children have... when is it time to tell them about their themselves?

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. Read the rest of the post here.

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up. See all our Favourite Friday's posts here .

Favourite Friday (again): It's time to tell him

Last week's favourite post is still this one, it's had thousands of hits.  For us it answered the question many parents with autistic children have... when is it time to tell them about their themselves?

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. Read the rest of the post here.

On 'Favourite Fridays', Rainbowsaretoobeautiful will publish the most popular post from the previous week. If you missed it, then here's your chance to catch up. See all our Favourite Friday's posts here .

We've got to get our kids outside even if it's wet

There's no doubt that the cold and rainy weather makes it harder to get out with the kids. Even if it's not actually raining - everything is sopping wet. But we've found it's always worth it.  And our new wellington boots, have made it that bit easier.

WonderfulWednesday: UndiagnosedDay

This week's wonderful Wednesday share is a shout out to a few people raising awareness of those undiagnosed. Last Friday was Undiagnosed Day.

Watching our son stand for his Christmas concert

It's the time of year when my hubby goes in late to work due to the variety of Christmas related performances. 

Last weeks was Anthony's turn for the Yr 3 & Yr 4 'Christmas Sing-Up'. A wonderful 45 minutes of Christmas cheer squashed into a gym hall. With a mix of whole year, cast and class songs to enjoy!  As always it opens with a song from the whole 180 kids on stage. Except of course for our son. 

We know Anthony knows all the words, because he sings them in the car and in the bathroom, even sometimes in bed. But it's as if his mouth is glued shut. He must have been breathing through his nose in an effort to ensure not a sound escaped his lips. It's ironic really as Anthony actually has a lovely singing voice and carries a tune far better than a lot of the other kids there (honestly not just because I'm his mum either). Instead what actually happened was that my husband took three hours off work (by the time you add in commuting etc) in order to watch our son stand up and sit down with between 29 and 179 other kids. 

But wait, there was also some instrument playing. Anthony has music therapy so can actually play a bit of piano. And again the truth is he'd have been just as good if not better than the other kids... if he would play in front of an audience.  It's no surprise I suppose that he didn't want to perform at the music therapy concert either.  

It's something to do with the spectacle of it all.  Praise is difficult to receive, we can only clap quietly or give pillow claps (think air claps) when he does well.   We were at a lovely birthday party at the weekend, and as we sang happy birthday to the birthday boy, I knew Anthony would have been hiding away in a corner outside. It's just too much pressure and focus, even when it's for someone else! 

Still for a kid with ASD, Hypermobility, possible ADHD etc etc, he managed to sit, stand and do actions appropriately throughout his 'Sing-Up'. And whilst sometimes like in 'The hope I see in the kind acts of children' I'm overwhelmed by his ability to take part in class assemblies etc, my partner and I were happy enough to giggle at the fact that we'd managed to get a few hours otherwise kid free and off work just to watch our son stand up and sit down 14 times. 

Who knows, with another year of maturity, he might manage a whisper, but only if he can hide at the back and we promise not to say much afterwards. 

Links
Our blog - The hope I see in the kind acts of children (Anthony's class performances)

A lead pipe, a ball and a pair of feet - our swimming sensations?

Last night was a real treat for me. I don't usually accompany Anthony to his swimming lessons, I'm usually the stay at home with the others kids parent.  We knew that Anthony would need individual lessons and that his autism, dyspraxia and sensory processing would need a sensitive touch.  It took two years to get someone, but Anthony has now been going to lessons for six months and his progress is so encouraging.

Going swimming as a family was always a bit of a mission. Once the drama of actually getting ready for the pool was over, it became a game of keeping them all safe. 

Anthony's younger brother, David, is nearly five years old and has ASD and hypermobility. Part of this means he is both very flexible and loves the feeling if touch. In the water he has on a float vest and little water wings. He then folds his legs so his feet are against his chest and hugs himself. Yep, without assistance David is basically a ball floating away in the water.   

Their little sister Jane is as inquisative as any two year old and spends a good deal of time lifting her feet out of the water, to the joyous exclamation of "feet!"

Then there was Anthony. He's quite temperature sensitive, his dyspraxia means he needs motor skills broken down into small steps, and can find it difficult to focus in busy or loud places. When you put him in the water he'd go rigid, but instead of floating like stick he'd just sink like a lead pipe. Worst of all, he would be absolutely still, meaning he would make zero effort to get back above the water. Combine this with not being able to tolerate water on his face and swimming for Anthony was really just paddling up to his waist in the learner pool. 

His transformation over the last six months has been amazing. Don't get me wrong, he's no Olympic freestyler, but he is developing a style of his own. It took weeks of pouring jugs of water over his head in the bath and then all of a sudden he was fine with water on his face. He still sinks like a lead pipe if he doesn't move but today he managed four lengths on his back and a very messy width on his front. He still needed a teacher helping him sequence his movements a bit by saying arms or legs at the right times. 

Neither his lengths nor his width could be described as anything close to graceful.  And neither compared to the real surprise from his lessons. For the boy who didn't like getting his face wet is most comfortable and joyful when swimming under the water. He now couldn't be more unlike a stick, constantly moving about and storming through water to collect sinkers and just to get from A to B. It's just a delight to see.

His swimming teacher has told us that without constant supervision he'd still end up under the water, but he's made such progress. At least if he fell in the water somewhere he's now got a chance of survival. And that's pretty good.

Links
Our blog - Hyper-what else?

External Links
NAS - Sensory

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It's World Down Syndrome Day - what's with the socks?

Today, many people will have been wearing odd socks for World Down Syndrome Day.  But what's it got to do with socks?