“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

HAPPY BIRTHDAY?

I knew it was in August, but it had stayed buried, until someone during a unrelated conversation reminded me, the shock, the anger at myself and the shame and guilt rushed at me, literally  taking my breath away.

Had I denied him by failing to remember him at this time of year? Can I console myself that I do in fact think of him, even subconsciously, on a daily basis and therefore am I forgiven for the unintentional lack of remembering that today is the day he was born, and  in a day and a half it will be the day he died. Does it make me a terrible mother to him that the day did not shout out to me?

16 Years old today, my son, the boy who I never met, the boy who remains a wonder and mystery to me, a shadow of a memory who’s fleeting presence in my everyday life is small comfort to what could have been.

Passing away so soon after his birth means that according to Jewish Law I do not have “Yahrzeit” a day, set aside to remember him by, a candle to be lit, prayers for his memory to be said, what I have instead is a cold, grey stone, cut in to the shape of a heart with his birth day and the name I would have given him engraved on it, given to me by the hospital approximately 8 years ago, when I made my final pilgrimage there to enable myself to have the closure I so desperately craved.

Visiting the hospital where he was transferred to, being shown around the intensive care unit, being given the notes that were taken, sitting in the “garden of dreams” all those years ago I had finally felt a nearness to my son, it had taken many years of anguish and heartbreak to both find out where he had spent his pitiful life, and where he had been buried, so much of the trauma had been blocked out, sent to the back of my brain where a lot of the memories are still hidden.

I hear my brain shouting at me, echoing words I have heard from others, “get over it, it was so long ago, you have moved on, focus of the living, focus on what you have now” so this is a message to all those who have loved and lost, and continue to love the angel, the pure soul God blessed us with, you do move on, you do focus on living, the love you have in your life, but you never forget, you can not forget, each time a friend or family member gives birth there is a raw pain, there are prayers that their baby is healthy, there is a tiny spark of jealousy.

With each birthday I allow myself time to close my eyes and think, today he would be 16, would he be doing A levels? would he be academic? Is he a happy boy? Or is he moody, and angry with the world in general as is a 16 year olds given right to be? Is he loud, musical, an actor or dancer like his sisters are? how religious is he? Does he love and value Judaism, have we taught him right from wrong?  Is he rebellious or is he laid back and happy wherever he may be? What foods would he like? What kind of clothes… the list goes on and on, if I let it, the list can overtake all other thoughts today.

If you are feeling judged right now because you lost your angel so many years ago but still feel the pain, know that you are not alone, no one can ever tell you to get over it, or move on because your can not and should not.

Never forget, never stop hurting, because it is the pain that connects you, the love that the pain brings, although so difficult is what will keep you grounded and give you the knowledge and the validation that you were once your babies mother.

I may not be obligated to light a candle, it may not mean anything in Jewish Law, but tomorrow I will light a candle, because it will comfort me, it will give meaning to my sons life and it will light up my home with its warmth, and maybe just maybe it will make me smile when I sit and look at it, smile because I know that today, he sits with God next to the Throne and is smiling back.

Lots of love

 

sara

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