A vision for my son's good life

I have a vision for my son to have a life where he is:

valued
connected
learning
happy

I need to be able to articulate what this would look like to his teachers and peers. Here are my thoughts and I would be very interested to hear more ideas...

Valued - has roles that are respected and admired by his peers, is treated in an age appropriate way, is not kept separate from his peers, is spoken to in a way that is respectful.

Connected - has peers that show interest in his welfare, participates in recreational activities with his peers after school, is invited to social events by his peers, is invited to participate in activities in the playground with his peers.

Learning - is exposed to challenging learning activities within all the domains of the curriculum, develops new skills, participates in activities that build on his interests in music, sports and computers.

Happy - willingly goes to school, shows physical signs of happiness such as laughing smiling, willingly cooperates in activities.

I have been changing nappies for 15 years

I have been changing nappies for 15 years. I have been scrubbing spilt food from the floor, wiping sticky finger marks off walls and picking up toys for 15 years too.

Other parents enjoy watching their kids grow up and begin to fend for themselves. I still have do everything for my 12 year old and I am getting tired of it.

Just like other parents I want to retire from my parenting role one day. I dont want to be 80 and still changing nappies.

I need to make it happen. I cant sit around and wait for the government to look after my son.

I dont know how I will do this yet but the thought of changing nappies and endless cleaning for another 40 years is good motivation to work it out.

Off to ordinary school and no, I am not nuts

I am neither nuts or not facing reality. Nor am I a selfish mother, hellbent on including him or bust without a thought for my child. I just want my son to learn, to make friends and be happy and I can see that an ordinary school is a place he can get all these things.

There will be issues to overcome. How will he get from one part of the school to another? How will he cope with toileting? How will he participate in lessons about complex ideas?

There are ways and means around all of these issues and the school is working with me to get around all of these issues.

The nay sayers always ask me what he can possibly learn in an ordinary school? Well that's like barring 2 year olds from the museum because they are not old enought to get anything out of it. My son may never understand the periodic table or quadratic equations but he will learn to be able to classify objects around him and to make lines on a piece of paper.

He will also learn how to take turns, find his way from Maths to Science, line up quietly in a queue and greet people he meets.

His teachers will learn how to differentiate the lesson to help all the kids in the class and his peers will learn that you dont have to be able to kick a ball like David Beckham to be able to participate and enjoy a game of soccer.

I dont believe for a minute he will be bullied. It just isnt cool to bully a kid with a severe disability and besides, they wont get a reaction out of him.

It isnt going to be easy, but I am looking forward to seeing my son learn and make some friends.

Bane

CJ's wheelchair is the bane of my life at the moment.

The day when she received it seem so far away ... at the time, I was just happy to have it after over nine months of waiting and loads of stuffing around before then.

It didn't even bother me (then) that it was not the one I ordered.

I felt happy looking at a new wheelchair that signalled an older child, and a sense of herself.

I was pleased to be able to have something more age-appropriate and easier to manoevre than the buggy she had, and relieved that it was kinder on my back and more practical for use with a baby in a sling.

However it soon became apparent that getting it in and out of our car was not an easy task.

I have to remove each wheel, remove the contoured cushion, remove each arm rest, remove the headrest, fold in the handles, fold up the frame and somehow put it all into the 'boot' (not really a boot, just a small gap) in the back of our 7-seater people mover. It takes about four-five minutes to take apart, and then another three-four minutes to place in the car, jigsaw style.

This has always been frustrating in itself because it means a 'quick dash to the shops' to pick up milk or whatever is, at a minimum, at least a half hour exercise.

I had wanted, and ordered, a chair with a 'soft' seat that used the arms to fold itself, deck-chair style. The only thing assuaging my frustration was learning that it is unlikely to have been suitable for wheelchair transportation on the bus.

A couple of things recently have happened to add to my frustration with the wheelchair.

I injured myself as I have a number of times before, putting it together or taking it apart. Recently, a cut on one of my fingers has been exacerbated by further scrapes on the chair because it's in a really inconvenient place on my hands. It's now infected and I think I may need to seek medical attention for it.

Also recently, as I wore a good but light-coloured shirt, I realised I had wheelchair grease on myself. This has also happened a number of times before but now I have extra washing and a possible stain on my best shirt.

This morning, my son (trying to be helpful) injured his finger in the same way. It is bruised and swollen and I feel bad that his attempt to assist me resulted in pain and injury.

CJ doesn't like being in the wheelchair - she would rather crawl around. The only time she enjoys it is when we are walking at a brisk pace. As you can imagine, when we are shopping, socialising or conduting similar out-of-home activities this is not usually the case.

I wish CJ didn't need the wheelchair. I wish I didn't have to deal with the wheelchair. I wish we had $50,000 + for a vehicle with a wheelchair lift so I could transport my daughter without the hassle. I wish we even had $3,500 for a folding wheelchair for use on weekends. (At the moment, what money we have is committed to renovating our bathroom because CJ is getting heavier and my back is hurting. I am currently unable to use the $2,000 commode organised by her therapists because I can't get it over the ledge of our shower ... It was a nice thought and we were funded 80% of it, but not at all useful because it is not practical ... A story for another time).

I don't know what the solution is. I would love to see self-administered disability funding packages like in Canada ... but that is a long way off.

Thanks for letting me whinge in the meantime.

Yes, she can.

There are times in the life of even the most optimistic person when one can question one's faith in the 'happily ever after'.

This even happened to me recently.

I was surfing the internet and happened to come across this study from the Brazilian Association of Rett Syndrome in São Paulo :

CONCEPTS OF COLOR, SHAPE, SIZE AND POSITION IN TEN CHILDREN WITH RETT SYNDROME
RL Velloso 2009¹

The gist of it was as follows:

'Abstract – Individuals with Rett syndrome (RS) present severe motor, language and cognitive deficits, as well as spontaneous hand movement loss. On the other hand, there are strong evidence that these individuals use the eyes with intentional purpose. Ten girls aged 4y8m to 12y10m with RS were assessed with a computer system for visual tracking regarding their ability of indicating with eyes the recognition of concepts of color (red, yellow and blue), shape (circle, square and triangle), size (big and small) and spatial position (over and under) to which they were first exposed to. Results from comparing the time of eyes fixation on required and not required concepts did not differ significantly. Children did not show with eyes the recognition of the required concepts when assessed with eye tracking system.'

I was shattered.

Again.

I had always believed that my daughter was capable of getting a meaningful education, including developing functional skills in literacy and numeracy.

My daughter is nearly ten and they're telling me she can't even grasp the concepts a toddler can.

The article goes on to say:

'Parents or caregivers of children with RS state that their understanding surpasses their ability to communicate, and that this is expressed through the eye¹¹. Nonetheless, our results question these affirmations, at least in that which refers to the acquisition of basic concepts, at the same time that the conclusions of Tetzchner et al.¹²are ratified: that the fixed look of these children may not necessarily signify an indication of possible cognitive capacity superior to what they seemingly have, but rather that the persistent look may constitute an indication of momentary interest and a demonstration of great social interaction.'

Now here was something interesting. It wasn't just me.

How could so many parents be so wrong?

I got to wondering.

How can it be that a person can recognise a drawing of a sherbet lolly, but not a picture of a triangle? Why is that? How can that be?

Perhaps she thinks of colours, shapes and objects in terms of 'that thing that I like and want' rather than 'that thing called a triangle' ....

Perhaps the reaction time is really that much of a determining factor.

But what is the correct reaction time to allow for this syndrome? Or does it vary from individual to individual? How long should we wait for a response after asking a question? And how can we tell what is the final answer - the definitive response?

How can she understand humour, and laugh in appropriate places in the dialogue, if she has the mental development of a baby? Babies don't do that.

They don't sit there and watch Gilligan's Island and laugh appropriately. Do they? I'm sure they don't.

In desperation I turned to an acquaintance who has friends with Rett Syndrome, and asked how her friends communicated with her and whether it was true that people with this syndrome can't understand developmental concepts such as 'put the big red triangle over the little green square'.

I asked her whether I am wrong to believe that Violet can learn and maybe get a real education. I said:

'I have been fighting for her to have an education for so long, but maybe she just can't. If so, that's ok. I guess I just need to know if I need to recalibrate my expectations for her future .... Sorry, just feeling a bit down.'

My friend put me in touch with the parent of a woman with Rett Syndrome. This lady had managed to learn to read from a popular educational television show as a child, but did not have a method of communication until her late twenties. After this she was able to study literacy and numeracy as a mature age student at a college of technical and further education, and eventually matriculate.

This news was exciting beyond belief!

But the most wonderful three words I've ever heard were when she simply told me, 'Yes, she can.'

1 Arq Neuropsiquiatr 2009;67(1):50-54

A bigger pie

Sometimes I feel misunderstood in my desire for adequate funding for disabilities. I don't think one group is more important than another; everyone knows the difficulties of their own situation all too well.

I think we will always agree that special education (be it in mainstream or special schools) is under-resourced; that respite services are inadequate; that equipment funding is woeful; that those caring for people with disabilities are under-recognised, unappreciated and pathetically under-funded.

At times, I have found it a little frustrating that groups compete for funding at the expense of other groups. I find it sad that some groups are given more media profile and resources and funding than others. That is not to say I resent them receiving whatever pittance they are able to receive - because goodness knows, it is not enough.

But I wish disability groups would not argue over the size of their 'slice of pie' in disability funding, especially when some people 'go hungry' and don't receive any pie at all. I wish instead for groups to band together and unite in a common cause - for a bigger pie so that everyone can eat.

Coping together

One of the things that has become apparent to me since discovering my child had disabilities is the strain that this can put on a relationship.

I was reflecting on this a little while ago as I looked back on some old photos of my partner and me, from just after our child was born but before we knew anything was amiss.

We'd come through an emotional pregnancy following the near loss of our baby. Our daughter had overcome her failure to thrive and she was on track developmentally (though her muscle weakness was already evident). At that stage we thought it would all be much more smooth sailing. We had no idea of the heartache that was to follow, particularly in the following year or two. The missing of milestones, the continued muscle weakness, the numerous tests (including way too many blood extractions), the shock realisation that our child was not a regular child, the feeling of uncertainty and fear for my second pregnancy which was underway, the tragedy of finding out just how severe our daughter’s situation was, the self-blame, the emotional stress of dealing with other people, the anger and betrayal, the questioning of ourselves and our relationship, the attempts to understand why, the depression, the realisation and acceptance of the circumstances.

Thankfully those years also held the joy and relief of our healthy son (bittersweet as we watched him grow and develop wonderfully), though I remember vividly the stress and emotion of that pregnancy, particularly as we underwent genetic testing. While our daughter was (and still is) undiagnosed, the specialists said that there could be a 5-10 per cent chance that our next child was born with the same thing. That 5-10 per cent seemed mammoth at the time.And then there was the challenge and process of changing our understanding of ourselves and our faith (which I'll save for another time).

I was reminded of my and my husband's wedding ceremony, where the priest said something like, 'the future, with its joys and triumphs and difficulties and sorrows, is hidden from your eyes.' As with any couple in the situation, we took our vows hoping that we would be together through good times and hard times and that hopefully we would use these times to grow closer together.

Yet we were so oblivious to all the future held and I although I anticipated heartaches and tragedies and sorrows, I was a little naïve and idealistic. I never in my wildest dreams imagined that our future entailed a dear, beautiful, lovable yet severely disabled child.

I remember clearly the way that I questioned everything when the disability all became apparent. And I know way too many single parents of disabled kids because the added pressure was too much for the relationship, or one of the couple did not deal with it, or wanted to escape life with disability.

Yet now I can honestly say that I am so very grateful for her (and of course the other members of my family), and I am amazed that we managed to keep with each other particularly through this very hard time in our early marriage.

I am not sure by what miracle this happened but I do remember us being *very* candid with each other about how we felt about everything ... including our relationship and what the disability meant for 'us' as a partnership. I was unbelievably supported by my family, close and wise friends, and most importantly, a parent group of people who had kids with disabilities (many of them on their own), with whom I could also be truly honest. And that's why I think this blog has a really important role to play.