Wednesday, 16 November 2016

But What About My Child?

Yesterday, a father's appeal to social media went viral. His son has autism and will only drink out of a certain blue Tommee Tippee cup which has since been discontinued. The man has been overwhelmed by people from around world rooting through their cupboards to find him a replacement cup. You can read the full story here.

I am really pleased for the father that he is getting help. In his situation, the cup could literally make the difference between life and death for his son, as it is the only way of getting fluids into him.

Yet there is a small part of me that gets a little bit cross every time I see the post shared by fellow bloggers and Facebook friends. The same part of me that will get upset when I watch Children in Need this Friday, and not because of the heart wrenching stories.

You see, my children have special needs. I am in touch with thousands of parents with children with autism, and the story about the blue cup is being repeated daily in many autism households. Something precious is lost, something important which gets your child through the day gets discontinued, BirdsEye change the recipe to their fish fingers or Persil add a slightly different smell to their wash powder. Autistic children thrive on routine and struggle with change and a slight difference, which may be undetectable to you and me, can cause them extreme anxiety. This can result in meltdowns, refusals to eat, self injuring behaviour, things that are extremely distressing to the parent and can have serious consequences to the child.

My problem is that although this happens on a daily basis in autism households, where is social media for those parents? Where are the offers of help and replacements in those situations? Why did one parent manage to touch a chord with millions of people yet so many of us struggle with the same thing day in day out, but no one cares?

A group of SEND bloggers recently tried to raise awareness about the lack of suitable changing places for older disabled children. I wrote a post about it and we did our best to raise awareness in the media but it never 'caught on'.  Then again, if we could work out the magic formula to go viral we bloggers would be very happy people!

This is the problem I have with Children in Need. They do a wonderful job and some of the services they provide are fantastic. But where are those services when I need them for my children? Or any of the other thousands of parents with autistic children? 

I realise that by posting this I can come across as a bit of a grumpy jealous old cow! But that's not why I feel this way. I think it's the reaction to the unfairness of the world. And I also think it's something not many would dare to say.

If you don't have special needs kids, the next time you see an article like this, please give it some thought. Ask yourself if it's possible there are other children in similar situations. Please don't forget about us just because we didn't go viral.

1 comment:

  1. Ahh it's a tough one isn't it. Such an important post and important to be aware that there are so many thousands of other parents and children who have a daily struggle. I don't have the answer either but I wish I did!


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