I was feeling sorry for myself.

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Today, I was feeling run down, and therefore sorry for myself. I do wonder if stopping my iron pills has been part of my reason for feeling so tired, but never sleepy, at the moment, but the doctor wants me off them for three months before doing more blood tests – I just have to keep going for that long!

I then stopped and thought about how lucky I actually am, after a chance conversation with a Mum going through hell and back trying to get answers about her childs behaviour, and fighting to get taken seriously that there maybe something that needs help. I wish them a lot of luck with this as it is a heartbreaking process that never has a positive outcome. You either have a piece of paper that says your child has to learn to live with being different, or you return to stage one of tearing your hair out as you don’t know what to do to help your child cope with the environments we put them into. All that can be done is to love and support any child.

So this is why I feel I am so lucky. M had shown signs of doing things a little differently from as young as a baby. He flapped. As we had never seen another child doing this we had no benchmark to decide if it was just something some kids do or if it meant there was something wrong. We have video of him sat in his high chair on his first birthday flapping away. Eventually we realised it wasnt “normal” behaviour and went to our GP who upon hearing our description of his behaviour referred M immediately to the hospital. This lead us on a horrific 18 month journey of testing and assessment which ultimately led to his diagnosis as High Function Autism. I cried for ages after we were given the news. It didn’t change who he was to us, he was still the little boy we loved beyond anything, but now he had to face the world with a label on him. I have always hated the idea of putting labels on people, but especially children. Then, the reality sunk in that the reason we had pushed for answers to his behaviour was to help him. This label we had put on him, wasn’t in flashing neon, so it wasnt the first thing people see when they meet him. It did however mean it opened doors of help for him. It meant the school were able to understand when he couldn’t cope with sitting in the middle of the class, or that the playground can overwhelm him. It meant we were able to adapt our behaviour to allow for things he found stressful. All in all, for M being labeled as ASD has helped him cope, because it helps people understand why he is different. It may not mean that he always gets the help and support he needs, but it does mean the root of his behaviour can usually be identified.

In a way I feel we let D down. It is two years ago today that we had the first appointment with the psychologist about him. That time was just us filling her in on his behaviour. He was showing signs of being “different” early on, but we were so wrapped up in getting M diagnosed that he kind of got left behind. We felt a lot of his behaviour was attention seeking because M often needed more of our time, or that it was learned behaviour from M, and so, D got into trouble rather than got understood. We did eventually wake up to the fact that his behaviour was also a little abstract which is why we seeked help from our health visitor and then having explored all avenues of basic bad behaviour, our GP. D’s diagnosis was far quicker than D’s with the psychologist commenting he presented as a child with aspergers, which is what she diagnosed him to be, after just a 45 minutes one on one session with him. Most people are shocked when D’s condition is mentioned to them as he can be the sweetest little boy in the world, he is eager to please, and just quietly agreeable. They don’t of course see the major tantrums and meltdowns that he has as a result of holding it together so well. School is therefore a difficult place for him. He holds everything together from the moment he enters the playground in the morning, until we leave it at the other end of the day. I think for  anyone holding their emotions in check for that long, it is understood when they loosen the strangle hold. It can not be an easy thing for him, but I think he would be devastated if his teacher saw his other persona.

I therefore count my blessings that M got his diagnosis in place before school started and has therefore had the chance to be understood at school. I am pleased that D can be a studious wee man and enjoy learning, even if he pays the meltdown price when is the safety zone at home. I am lucky we have people around us who are understanding on the most part. Those that don’t try to understand or don’t accept the situation tend to be distanced from the boys as their input in not helpful and rather unhealthy for my children. I feel blessed that on the whole I can try my hardest to find ways to help my children learn to cope in a society that finds their behaviour not always acceptable. I have two loving charming children who I adore. They are well-adjusted boys despite their problems, and for that I am truly thankful.

So, the reason I feel for the lady I spoke to  is because it must be harder to cope with the diagnostic process as the child gets older. Should they get a label for their child, it will mean re-evaluating the way they are as parents, which as routines get set in place over the years can only get harder. I hope they can find help whatever the outcome of the assessments.

For me though, I will continue to run around after my boys, and my mother, because that’s just what I do!

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3 responses »

  1. I can relate to a lot of what this lady is going through, not having been diagnosed with Asperger’s/ASD till age 20. My parents recognized the signs early on too but felt that a label would be limiting my progress. This may’ve been true as I did get more help after my diagnosis and before it, was mroe or less forced to cope on my own. Then again, I’m much happier now than I was back then.

    That beign sad, I totally understand you were feeling sorry for yourself too. It must be a struggle having two ASD kids and also having your own physical health issues. I had iron deficiency, then B12 deficiency, now fatigue that can’t be explained, and it makes me cranky too.

  2. Pingback: Autism and Blindness: Reflections on My Diagnosis | Blogging Astrid

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