A balancing act.

Had one of those conversations with the boy last night that made me again acknowledge his level of dyspraxia. He was lying in bed and I asked if he wanted the door closed to which he replied that he needed some of the light from the landing so that he knew which way round he was lying!

I pointed out to him that he has been lying in the same direction for pretty much a year now, as we changed beds last spring. Surely by now he knew where his head was, this was not the case. We had a little chuckle that he was soooooooooooooo dyspraxic, quite a common phrase in our house and I bade him goodnight.

Isn't it amazing that something so instinctive for me and all of us neurotypical people out there is missing in people with dyspraxia? The boy for years has always required a light at night time so that he knows where he is, something that until recently I could not understand. When he sleeps in other people's houses the difficulties are further increased, he has fallen out of bed a few times because he can not feel where he is in relation to the bed.

The skill that we have in order to know where our body is, is called kinesthetic awareness. This relates to the information from the senses which inform us about our body, where the parts are, the space between our body and objects around . It can also tell us about the direction we are moving in and where our bodies end and the world begins. Whenever the boy had a growth spurt he would become particularly clumsy as he would need to learn that his legs were a bit longer which would then require him to concentrate more on  moving them so that he would not fall over.

Before he was diagnosed with Dyspraxia, the boy was seen by an occupational therapist who diagnosed him with Sensory Integrative  Processing Disorder. There is a wealth of information about this and I could describe it in more detail but I feel if I describe it as how it affects the boy, it will be clearer.The boys body recieves incorrect information from his muscles, hearing, vestibular and tactile senses which means that his development is skewed because he responds to stimuli differently. The visual sense is another route that can be affected too within this disorder. Children can also be high seeking so they want activities that require lots of stimulation ie rough housing, loud noises, fast swinging so that they can get the appropriate amount of feedback to their bodies. Or, like the boy they can be low seeking which means they avoid most playground apparatus, parties, brightly lit places, any type of physical contact because their senses are overloaded. Because of the misinformation,  the boy's body learnt to adapt his responses as he felt would be correct for him. This means that although he responds differently he gets to the same place as everyone else, just in a different way.

So something like holding a pencil for example needs him to ascertain how hard to grip it. He is over sensitive to touch,so  he would hold it too lightly but then that would mean it wouldn't be enough pressure to make a mark on the paper, so he would need to reprocess it all again so he could then function to use it. However his motor skills are affected too, so he would need to work harder to manoeuvre the pencil properly to write. Oh  hang on, he can't balance either to sit on a chair and write at the same time,  so more energy is needed to keep him upright, the pencil and paper still and now he is expected to look up at a board and copy whilst managing everything else. Who would have thought it could take so much work? Add to this  a lower sense of self esteem as they observe their peers manage everyday tasks effortlessly and it is clearly obvious why intervention is needed early.

For a while,  he had occupational therapy to help stimulate his senses properly. He would sit on a large swing in the middle of the room and be pushed to help him gain more control over his balance or his limbs would be brushed to help him desensitise. When he was in year 6, he decided that he didn't want to be different from his peers so the therapy stopped. I now slip the therapy  discretely into his daily activities, such as a weighted blanket on his bed so that he can get the correct feedback from his body when in bed and I also get him to carry heavy shopping bags to stimulate his muscles. We have muddy dog walks where he has to walk on uneven ground,  walk along logs to avoid boggy areas the whole time stimulating his balance (vestibular) senses.

The whole time then, these children with Dyspraxia are concentrating harder because of having to filter out incorrect information about their environment and then they need to plan and organise how to respond appropriately.  In my boy's case this even needs to happen when he's in bed! No wonder he's tired.

Let It Go!

I want to sing this blog to the very popular song from Frozen, however the thing that I need to let go does not resonate around me concealing my feelings and challenging everybody else....that was last year!

 

So, the Saint was off sick last week along with the boy's other teaching assistant. Disaster. He is currently attending two mornings a week, which has been wholly supported by the teachers. It has been heart warming to come and collect him and observe him interacting with them and he has been very positive about the other pupils there as well. When I heard the news that the teachers were off sick, I in all my non dyspraxic, non Aspergers innocence thought well that's not too bad, he can still go in, after all, its only three hours and all of the other teachers are lovely.

 

Wrong, Wrong , WRONG! No Mrs Quirky, your son has Dyspraxia and Aspergers, he can not possibly cope with change of teachers especially during this particularly sensitive period of adjusting to a new routine.

 

 Eh? Surely he can manage a little bit, c'mon, it's not as if he has to cope with a class full of kids is it? There must be some bounce in him somewhere. Apparently not.

 

So he had the week off.

 

There is a part of me that finds it hard to explain why my son is struggling in the  best specialist  unit in the city. Despite him being on anti depressants and having these diagnoses, I sometimes see a cheeky 13 year old lad who is bunking off school. I really feel that he should have a limb wrapped in plaster just to remind me that I need to be patient and understanding. No wonder people with mental health illnesses struggle so much. The boy even moaned that I was not a good advocate for the Dyspraxia Foundation if I couldn't even listen to him properly.

 

The Saint phoned me up this morning to let me know that she was back at work and looking forward to seeing him again tomorrow. I admitted to her that I had been a bit like a bull in a china shop  in trying to encourage some contact with education and she reassured me that the boys behaviour was normal for his condition and that the other pupils had been just the same. She did not want to rush him like he had been previously because that's what had ruined his school attendance before. It dawned on me that if I kept poking and prodding him in all of my eagerness, it would mess up the Saint's fantastic work with him. Maybe I was underestimating the amount of effort that it took for him to attend. Looking back, we have seen him do well at something like sailing and innocently encourage him to do a bit more to find that he drops out completely, there just is not enough energy to meet the challenge. We then witnessed the same behaviour with horse riding, cubs, guitar lessons, hockey and so on. Quite clearly, there is a very limited amount of bounce.

 

The boy has remarked as well that he feels that our affections for him are entirely based on whether he attends school. That is not what I want him to feel, unfortunately he does not seem to notice the never ending supply of hot milk, crumpets, pocket money and loving words that come his way as well. It is very difficult as stated a million times before in this blog to accept the deviation from the normal path of parenting and I imagine myself writing lines as a punishment every time I react in surprise that he does not respond to situations as I would have expected. The L plates are still firmly attached!

 

I also  never anticipated that I would have a child whose inner motivation goes  against the grain of how I would normally parent in regards to praise and encouragement. I think that has been the most bitter pill to swallow. There has been articles in the parenting press recently about the "dangers" of over praising in that the child is anxious about their performance at an activity rather than the taking part. I try not to go overboard in my encouragement and I certainly do not demand that my children achieve top marks in all subjects. The irony is now I am trying not to be an over anxious parent which increases my anxiety even more!

 

So, I am letting go of the rope that binds me to the anxiety of him engaging with the education system. The Saint knows what she is doing and I do not want to make her work harder. I am most fortunate that I can faithfully pass the worries to her. I promise to look interested peers in the eye and say that yes the boy is doing fine on X amount of hours per week and be 100% behind him. Just need to let go.........................................