“Keep him at home” she said ….

Usually I write about what I know, basing my writings on knowledge gained through life experiences, but today, and forgive me if I come across as ignorant I feel the need to write about something I do not know very much about, and that is autism.

I have a daughter who is somewhat on the spectrum, but as you will know if you have read (and thank you if you have!) any of my previous blogs, the relationship I have with my daughter is so complex, and therefore I am not fully aware of the intricacies of her needs, but I do have a very good friend who has a child with autism.

Today I spoke with her, she told me about how the long holidays have been an eye opener for her, how as her son grows and  his needs become more complex  people  she meets react to her, she sadly related over an experience she had today whilst in a park with her son, whilst he was playing in the sand a lady rebuked her for her sons behaviour and informed her “children like that should be kept at home”.

 In my mind, it is irrelevant whether her son was sitting quietly, or throwing around sand, or acting out, what is relevant however is how people reacted to this little boy, a young child whose appearance shows no sign of having an extra need, or as we often say a “special need” he is a tall, well built boy, with beautiful eyes, and a beautiful soul, yet when he goes out there are certain things he needs, again I am not an expert and am not fully aware of his needs, but for example if things do not go in the way he expects he will react, in a more extreme way than some children will.

Till a little while ago he could not go on a bus, he would fuss loudly and my friend became used to the stares, and the disapproving shakes of the head, she became used to having to push him in a specialist buggy, she became used to people judging, and making comments to her, but however used to something we are, the reality is, it hurts, it hurts so much when you give and give and give, and then one unkind, insensitive comment takes all the hard work that you are so proud of and grinds it in the mud.

He has come so far, when I saw my friend with her son today, he proudly told me ” I went on the tube without my buggy” he was so proud, he felt a million dollars at his achievement, and we shared a high 5 in happiness. He managed to walk a distance and made it to the park feeling great, yet whilst playing in the sand he noticed, and my dear friend noticed, and was aghast at an adult, pointing her finger, laughing and showing her children the little boy who was not acting in a way she considered “normal”, and all the pride and joy both he and her felt was cast aside and the crushing sadness replaced the joy.

Autism is in general an “invisible” disability, upon seeing my friends son he looks like any other child, but he is not, he is different, yet that difference makes him sweet, kind, caring and so loving, I know that I will always get a hug from him ! , sure it also makes him act out when he experiences something unexpected, or becomes upset, but which child does not?

Yes his reactions may be extreme, but to him routine is so important and so is knowing that he is loved.

I have seen my friend give her all to him, I have seen the love, care and pure, unadulterated devotion in every way possible she gives to him, from never giving up on him being accepted in to a school that was perfect for him, even though it seemed financially impossible, to patiently replacing household items that have been damaged when he is upset. I have seen my friend gently tending to him when he has lashed out, and never has she stopped, she carries him in her arms and heart.

We often complain about the behaviour of our children, but if others criticize their behaviour we will do anything to defend them, imagine the hurt if our child could not regulate their emotions, and lashed out in frustration, if we knew that our child was trying as hard as they possibly could to live the life they were given but struggling from the moment they woke to the moment they slept, imagine others shaking their heads, telling us to keep him at home, that he should not be let out in public.

She tells me, that people are so good, how they came to her defence in the park, how they told her “your doing a great job” and she appreciates those people, those are the people who give her the push to carry on the amazing way she is looking after her son.

I guess my message would be, we don’t know, we cant know, because someone does not look like they have a disability, because the person may not be in  a wheelchair, or have a special need such as downs syndrome, which is easily identified it does not mean we have the right to look, to shake our heads at a child’s behaviour, we can not judge we should not judge.

I have utter respect for my friend and so, this is dedicated to her, and to the millions of other parents who tirelessly work to give their children with an “invisible” special need the best life they can have.

Lots of love

Sara

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