I always like to think that I try to outweigh any struggles by looking at how far Isaac has come and how far we have come as a family. In reality though, that doesn't always happen.
Right from when I received the very first report ever sent which detailed his delay in motor skills and poor co-ordination I made a conscious effort to replace any negative observations with a positive one. For example, his first report detailed how, at almost 20 months, Isaac was still not independently walking or even attempting to. My thought process on that, was that it was OK that he wasn't walking, but he was crawling, and it the few weeks prior to that report arriving on my doorstep, he had leant to cruise around the furniture. That thought process helped me remain focussed that whilst he was not doing things that children of his age typically were, he was, nonetheless making progress, and progress was good. It also helped on the days when I was feeling a bit low about things, it helped me to focus on the positive not the negative.
As time has gone on we have so many reports that I now have 2 lever arch files full of the. The latest report arrived this week. The appointment was not particularly successful as Isaac was not particularly compliant on the day. To put it brutally honestly, Isaac is never compliant on these days as he doesn't like Drs, he doesn't like the interruption to his routine and most of all, he hates being late. He is obsessed with time, so, if his appointment is due at 11 o'clock, then he gets called in at 11.45, it is never going to go down well. That is exactly what happened with the most recent appointment. 45 minutes after his scheduled time we were called in. Isaac had been pacing up and down the waiting room getting crosser and crosser. He then sat down and announced that the paediatrician had precisely 1 minute to call him and then he was leaving. With that he proceeded to count back from 60. Now when Isaac starts counting, he means business and if he had got to zero, he would have been off and there would have been very little anyone could do to persuade him otherwise. Thankfully, with about 19 seconds to spare she called us. Isaac told her in no uncertain terms that she was lucky he was still there and then asked if she could tell the time. He then refused to take part in the consultation at all and sat in silence.
So all this leads me to what gets written in all the reports and then sent to me and everyone else involved with Isaac. I know and fully appreciate that the reports written are the clinicians observations and have to be a true reflection of the consultation but that makes me sad because you don't get to see Isaac. What they don't do is give a picture of Isaac and who he is. So, I thought I would write this letter so you can see all the things that get missed. The little things you don't see.
Dear Dr..........
You always write to me to send me reports from any appointment, you make your observations as best you can in the limited time available. Obviously Isaac is not your only patient of the day, you quite probably have several (too many maybe) to get through all with children similar to him.
I often read your reports and, after making a mental note of what was written, file them away in the folders with all the other reports I have for my son. I make an effort to balance everything out. So if something is written that is not necessarily positive, then I will remind myself of the progress he has made to re focus my thoughts. One particular example could be when it was written that "Isaac struggled to grip a pencil and copy a simple shape" This was when he had been at school only a few months. I turned this around to "Isaac can now grip and control a pencil." Which is something he could not do just a few months earlier. I reminded myself of the progress made and was happy with that.
I know that reports are written and used should we need to access funding or services, so they have to be written exactly how it is, they cannot focus on what Isaac can do, they have to focus on what he cannot or he wouldn't get the appropriate help. I accept all of this and up until now have been very good at not seeing the negatives in this. It is a necessary evil, part of the process and to achieve the desired result, that is the way it needs to be.
However, just last week Isaacs latest report landed on my doormat. I sighed as I opened it, (like I always do), then I opened it and began to read. I'll admit that initially I laughed out loud as I read the words. "Isaac continues to be a difficult child to parent. He was clearly annoyed at having been kept waiting and told me I had called him in with under a minute to go before he was leaving............ He did not engage further in the consultation." I laughed because thinking back to sitting in the waiting room, you had 20 seconds or so to call him before he was leaving, and believe me, he would have gone. He is very obsessed with time and once he starts counting seconds, he means business.
Once I stopped laughing though, it actually made me really sad. You see, this is how you view my child, my precious little boy. A 'difficult to parent child.' He's really not though. You saw him at a bad time. You were 45 minutes late. 45 minutes he had sat in that waiting room with no update as to when he would be called. 45 minutes of him being somewhere that always elevates his anxiety, he doesn't much like Drs, they talk to him, ask him questions that make him feel uncomfortable, talk about him as though he wasn't there. Sometimes Drs even hurt him. Not intentionally of course, but he needed blood tests and other procedures which are always more traumatic for him than your neurotypical child. That is why he was annoyed, he was anxious. The longer you kept him waiting, the more that anxiety had a grip on him, after a while it grips so hard that it cripples him.
So many times it has been written that Isaac continues to be rigid and inflexible. Isaac continues to struggle with most aspects of life. Isaac is unable to engage on many activities etc etc. This is all true. But, it is not who he is. That is his autism and all the many co morbids and difficulties that come with it, that is not Isaac.
So who is Isaac? This is Isaac. Isaac is my beautiful, funny, kind and loving little boy. What you don't see is his unique sense of humour. That boy never fails to make me smile in the things he says. He doesn't always realise he is being funny. One day he was talking non stop. You would see this as being unable to engage in a 2 way conversation and being unaware of his audience. I see it as he's excited and enthusiastic and he absolutely has to share that with me. I did ask him if he could take a breath and stop talking just for a minute. His reply, " I can't mummy, it's part of my charm." And do you know something? He's right, it is part of his charm.
You didn't see him this week when I was ill. I was feeling really unwell and was laid on the sofa shivering, you didn't see him come up to me and gently kiss me and say, "Poor Mummy." You didn't see him go upstairs, get a blanket and bring it down and cover me to keep me warm and give me one of his best teddies to cuddle to "Make you feel better Mummy." You see, he cares, he has empathy, it may be learnt, he may be echoing what he hears me say and copying what he sees the others do, it may be learnt and scripted, but he cares, my boy really cares.
You didn't see the time he won a big bucket of sweets and the first thing he did was to give one to his sister and his daddy. Okay, they had to ask could they please have one, but there was no hesitation, no needing to explain to him that it was kind to share, he did it, he shared. Yes, again, this is learnt, something we have spent a lot of time and social stories teaching, but he knows. Despite us having to teach him all this, he knows, and despite us needing to gently remind him, he is kind and he will share.
You see his anxiety, that cripples him. It grabs hold of him and physically grips him and stops him from enjoying things. What you don't see is his sheer determination to overcome that anxiety, you don't see his tears and his frustration as he battles to overcome that anxiety and more importantly, you don't see the triumph and the celebrations or feel his pride on the occasions he does manage to overcome it. Recently we were on holiday and had planned to take a trip on the jurassic skyline. This travels about 53feet into the air and then rotates 360 degrees to give a stunning view of the jurassic coastline. Isaac was beyond exited about this and in true Isaac style had viewed numerous youtube videos so he knew all about it. The day came for the trip and as we approached the tower, the anxiety gremlin jumped in to do it's thing. The tell tale signs of hand wringing and constant questions all beginning "What if........" started. Despite lots of reassurances, by the time we arrived the anxiety had its grip on him, he was battling between his desperately wanting to go and the fear that was gripping him and preventing him. There were tears, screaming, crying etc. I told Isaac that we wouldn't go on, it was fine and not to worry. But he knew despite everything that he wanted to go. He couldn't though, the fear had gripped and paralysed him and he started to sob, then he got angry with himself because he thought he had failed. Thankfully, some wonderful members of staff came and chatted to him, they talked through his fears, took him outside so he could watch his Dad and sisters on the tower and talked him through exactly what was happening at every stage. They calmed him down enough for him to gain control of the anxiety and then promised to ride with him. That enabled him to have his trip and the pride he (and all of the rest of us) felt when he managed to overcome his anxiety and enjoy the trip was immense. So you see, his 'stubborness' you often refer to in your reports is a good thing, its a tool he can use to help.
You don't see the awe and wonder as he 'lost himself' in a meadow of long grass and daisies. How he walked through safe in the knowledge that he could be exactly who he is whilst he was there. He could examine every daisy in detail and tell me how each one differed from the last, he could smell all the different smells that you and I miss, he can see the grass seeds and the damsel flys in such acute detail in a way that you and I don't. He can recall what is the same and what is different from the last time he visited that particular meadow.
You don't get to know that he knows more facts about roller coasters than you or I ever could. He can tell you which roller coaster has which loop the loops, which is a pulley roller coaster and which uses cars. Which ones travel at however many miles an hour they travel at and how they work. He sees that detail in things, we miss all that.
You see him angry and uncooperative because your clinic was running late ( I know, it can't be helped, you are not allocated enough time for each patient to be able to give them all the time you would like and they need). But what you don't see is a little boy who could tell the time from the age of 4. Who knew what 5 minutes looked like on a clock and how many seconds were in a minute. How many 4 year olds can do that. He's amazing really when you think of it.
So you see, beyond all the difficulties that Isaac has, he has many more strengths and qualities. You tell me that he doesn't see the world the same way that we do, but actually, turn that around. We don't see the world in the same way that he does. We don't see things or hear things, or smell things in the same way he does, but when you think about it, maybe we are the ones that are missing out, not Isaac. He has overcome more mountains than you or I will ever have to in his short life so far and no doubt he will over come many more. Instead of seeing how he struggles, spend a moment to see Isaac and not patient number......, number 4 on your list for that day, another child with autism who needs help but your limited time and cuts to services mean you and he cannot always access.
I know you have to write your reports in the way they are written, but this is my letter to you, so that you can see my precious child as I do and not a 'difficult to parent, unhappy, depressed, anxious, rigid, set in his ways' little boy.
All the best.
Isaacs Mum xx
No comments:
Post a Comment