Tuesday, 3 May 2016

I don't want another additional needs child

father

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

9 comments:

  1. Totally agree - one of my favourite sayings is 'nothing is forever'. Then again, I'd also say 'don't bite off more than you can chew'.... :) I think you're being very sensible, realising how much of you there is to go around, right now. As you say, things may change. x

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    Replies
    1. Thanks Steph. Little did we know that day that our beagle would go to the vets that night and after three days not come home :-(

      You never know what the future will hold. So chin up and all that.

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  2. I have one autistic son and can fully understand where you are coming from. I have spent years arguing and fighting with 'experts' who seem to no nothing about autism, but work with autistic people. It's hard. It's tiring. And right now I am at my wits end.

    The best way is to focus on the here and now, because we can never predict what the future brings.

    xx

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  3. The decision to have another child or not is a really tough one. Adding the concern of Autism or a disability on top of that would make it all the more difficult I'd imagine. Our middle child didn't sleep for two years & that had me questioning having another. It's not a easy call. Thanks so much for linking up with #bloggerclubuk x

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  4. Try not to put too much pressure on yourselves to make the 'right' decision - and like you say, it can change - it's never final. I understand your predicament though. I don't have a child with additional needs. I do have a 17 month old who has never slept a whole night and wakes frequently due to separation anxiety and although I really want another child I often wonder if I will cope or how I will cope if I have another 'busy' child who doesn't stop and never sleeps. I've also come at it from a completely different view point in that I love my child so much, and to me he is everything I could ever have hoped for and more that no other child can ever possibly be as perfect .... So shoudnt I just stop at one and save myself the disappointment? I have friends who have made this decision for that very reason.

    I always come back to the same conclusion though - you will love them just as much as the others, to you they will be just as perfect and no matter what happens you will cope and make it work. Afterall, out of all of the days I thought I wouldn't make it through because it just felt so hard sometimes, turns out I made it through all of them so far which is a pretty good track record! I'm betting yours is the same :)
    #KCACOLS

    Www.arthurwears.com

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  5. It sounds like a really hard decision for you to make, and I love the sentiment you've ended on. The decision you've made for now doesn't have to be a firm one, it's not set in stone. Who knows what the future will bring for you. x #KCACOLS

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  6. We have been debating this for a while now. I have a health condition that is associated with autism and learning disabilities in children, and I don't know if I could risk it - having seen how children with autism suffer, and how their families struggle, I don't think I could cope. Lovely post and thank you for linking up with #KCACOLS

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  7. You are weighing up many things and realising that things may change. I wish you all the best of luck with whatever the future holds. Thanks for sharing an insight into your life:)

    mainy
    #kcacols

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  8. Such a hard decision. It is nice that you have made the decision though, and it hasn't been made for you if that makes sense #KCACOLS

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I read all your comments and appreciate you sharing your thoughts with me and our readers. I welcome any feedback on my posts and you can always contact me directly. Thank you.

What is Autism?
It's so much I couldn't possibly try and explain. For us it's wonderful and heart-breaking. Joyous and truthful. But as far as diagnosis is concerned, why not have a look at the National Autistic Society for their definition of Autism.
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