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Can I read?

By Granny 17 September 2008 38

My daughter 'Violet'Most people would be familiar with the story of Helen Keller. Blind and deaf, she defied the odds to make history when she was awarded a Bachelor of Arts degree from Radcliffe College, which was the closest a woman could get to Harvard in those days. She went on to make more contributions to the society of her day than most people without a disability will achieve in a lifetime. These achievements were possible because one woman believed in her enough to persevere in breaking down the barriers to communication.

Without communication, learning is simply not possible.

‘Violet’ has been at a public school in the ACT for six years. She is now in Yr 3.

Can Violet read?

Nobody knows.

Violet suffers from a debilitating genetic condition. She can’t speak and she can’t sign. She can’t even point. Does this mean she can’t learn?

Deakin University graduate, Anne McDonald, whose powerful story was told in the 1984 Australian film “Annie’s Coming Out”, says of the right to communicate:

‘For people without speech, talking is often dependent on the generosity of others, either in providing interpretation or facilitation or in giving up time to listen. While this is inevitable, there needs to be an irreducible right to make one’s opinions known on issues concerning your future well-being. At the moment social conversation and medical consent are equal in the sight of the law, both depending on the accidental availability of communication partners with the necessary skills and commitment.

‘There is no right to be heard. There is no right to an interpreter. There is no obligation to listen.

‘While social interactions are always dependent on the politeness and tolerance of individuals, it should be possible to legislate for a right to communicate in formal situations such as courts, hospitals and schools. Without such legally enforceable rights, people without speech will be at the mercy of decision-makers who can arbitrarily decide to disallow communication.

‘Communication falls into the same category as food, drink and shelter – it is essential for life, and without it life becomes worthless.’

The Right to Communicate
Anne McDonald

In her shocking exposition on St Nicholas Hospital Fourteen Years in an Institution Anne describes herself as ‘a severely handicapped athetoid,’ and states, “The combination of these difficulties meant that I could not use my hands, walk, or talk intelligibly.” Like many children without speech, Anne was considered to be mentally retarded; and even diagnosed as such.

It is not that we do not have the technology to enable Violet, and children like her, to communicate. It is that, for all practical purposes, our special schools and therapists here in the ACT do not have access to it. The therapists have no idea when Violet may be even able to trial an appropriate communication device, and doubt whether one will be available before the end of the year.

Meanwhile Violet has only three years of primary school education left, and is slipping further and further behind her peers.

Furthermore, each child in Violet’s high support class must wait to take turns because all need assistance to perform any sort of learning activity. With six children in the class, at times Violet can be waiting 50 minutes for a 10 minute turn. This means that in a six hour school day, she may only have an hour available to really learn something on her individual program.

Yet if she were in a mainstream setting she would have her own support person allocated to enable her to learn one on one. The mainstream setting is unlikely to be appropriate for Violet for various reasons, but why should she be discriminated against in terms of such an essential resource?

So instead of learning her ABCs and 123s, Violet has been studying assisted finger painting and excursions to the local Kippax shops. All very nice, but does it really constitute a quality education?

The teachers and therapists do the best with the woefully inadequate resources that they have. I have never met such a fine group of people as those who work within the special needs community.

For Violet, however, literacy is not going to be ‘just another nice thing to have’ but a core life skill she will need to communicate adequately with the world around her: to have any independence or human dignity.

Frankly, I have to wonder what proportion of children graduate from the special education system in the ACT with even a Yr 6 standard of literacy or numeracy.

If Helen Keller attended Violet’s school today, would she be just another student with behavioural issues doing assisted finger painting in the senior building?

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Granny 11:44 pm 21 Oct 08

Thanks, Moi.

Having you in my world makes it so much better, especially tonight. So thrilled about the art show ….

Big hug!

Moi 11:35 pm 21 Oct 08

I know you mentioned this to me ages ago Granny but I only just read it … Can I say you write bl**dy brilliantly and your posts have really touched me … We are on the same page … so many times I nodded my head as you put into words so beautifully and eloquently many of my own thoughts and feelings …
Anyway just wanted to say ‘hear hear’ and I hope you get to read this comment sometime.
Thanks also to some of the other touching comments – Loquaciousness, simply knowing you exist gives me confidence in the community members I don’t yet know …
Thank you all.

Granny 1:58 am 19 Sep 08

Gosh, where to start ….

BerraBoy, it is wonderful that your family is so supportive of each other and so positive about the challenges facing those kids. One of the hardest things about discovering that your child has a disability is the feeling of isolation that the parents can experience. You tend to think that you are the only family struggling with a particular issue. So one of the things I am hoping we can do is bring our special families together.

I have managed to meet some other parents with similar concerns, and it is so nice to realise that you are not alone; that someone understands and that perhaps some of these issues are bigger than just you. Perhaps they should actually be addressed! Ultimately it would be nice if no other family ever had to go down this path. If I can fight the battles now with ‘Violet’ then maybe your brother won’t need to fight them all again with little Josh.

It is very exciting that your wife is embarking on a career in special ed. We are crying out for qualified special ed teachers. I spent a year hanging around Violet’s school before our youngest was born, and it was such a warm and happy environment. Well, happy sad really, but it was a great place to be.

We have had such incredible support from our school, the education department and the therapists to begin to resolve these issues, but they will need the back-up in terms of resources from whichever government we have after the upcoming election.

Thanks, Mdme W! I think we all know someone like that. It is terribly sad. You really can’t help a person unless they want to be helped, but it is a shame that in this case it is the children who bear the consequences. Hopefully in the future some of these aids will be automatically supplied within the education system, and the child will not need to rely on the action of the parent to benefit from the available resources.

Having said that, it can be quite difficult to arrange to do some of the things you would like with your child. We have been meaning to take Violet to the clinic in Sydney for ages, but it is amazing how difficult it is for us to organise to transport the family down there for the necessary time both in terms of scheduling and finances.

So there are times when things can look easy from the outside, but not seem so easy at all from the inside. Carers are often juggling a lot of balls.

New Yeah, I really appreciate your post also.

I’m not entirely sure what constitutes a kidult, but our school has been supported by young people from Radford for many years now in many capacities. They have performed dramas for our kids, assisted in classrooms and with taking the children swimming and recently they even helped us man our Fathers’ Day Sausage Sizzle outside Bunnings.

It has always astounded me that this has consistently been a popular elective with the students, and there have been many years when Violet has come home with a little Christmas present from one student or another. The volunteers for the sausage sizzle seemed to really enjoy themselves, and rang their parents and begged to stay longer. They added such a lot of fun and freshness to the day.

One highlight was them buying sausages and eating them with great cries of rapture in front of the startled patrons to try and drum up some business. I think they might have terrified as many as they attracted, but it was terrific inter-generational fun, and we really appreciated their help.

That is a wonderful story, Aurelius. What lovely parents! Someone like your father is my definition of a real man. My little grandson doesn’t have a dad, and it is so sad. He has never known what it’s like to get out there and kick a footy around, or anything like that. But when real men step up and encourage and protect the women and children in their community my heart leaps.

I love our Aussie men. I think they’re the best in the world. I think that Anzac spirit lurks within them, waiting for an opportunity to happen. Nothing makes me want to cheer like seeing one of them step up to the plate.

Bundy, your story gives me such hope and inspiration. Hope is what makes life possible. So thank you, and also for all the kind things you have said about me. I do have feet of clay, and Gramps gets to see them when they really stink, but fortunately I do have other redeeming features.

: )

BerraBoy68 10:44 pm 18 Sep 08

Bundybear said :

take Granny’s advice, befriend someone with a disability, your life will be the richer for it.

Roger that!

Bundybear – my best mate was one of the most active bloke’s you’ll ever meet, now he’s in a wheelchair for life. He’ll always be my best mate no matter what but he’s taught me more about resilience and human spirit since he became a paraplegic than he ever did prior to his accident (SAS Blackhawk crash in Townsville).

As posted above, I also have a cousin with Cerebral Palsy whose brother is also totally deaf. They play football, travel the world, have university degree’s and generally enjoy life. I know able bodied people who can certainly learn a lesson or ten from them. I consider myself lucky not to be able bodied but to just know, and be very close to, such people.

Bundybear 9:46 pm 18 Sep 08

Well, surprise, surprise, scratch the surface of The Riotact and there are emotions and depth and sincerity and guts and caring and warmth. You’re all just a bunch of fake toughies and smart arses, aren’t you. 🙂

Seriously though, it’s a refreshing change to read such a genuine outpouring of honest sharing on a really important topic. I may have told this tale before, but it’s pretty relevant.

T was born 12 weeks prem after a horror pregnancy, at that point the earliest and smallest prem born in SA who survived. Diagnosis took a while as everything looked like it was due to being so prem. When finally dignosed, it was Cerebral Palsy with spastic quadriplegia. Prognosis was that he would be a vegetable who would never speak and die at about nine or ten.
His first speech at about two was “Biscuit” because he was hungry. He has rarely shut up since. He is a 28 year old living in his own flat, uses an electric wheelchair for mobility, and is friends with the whole world. And he has overcome more obstacles than you can imagine through his strength of character, willpower and determination.

To those starting out on a similar journey, don’t ignore the “experts”, but don’t take everything they say on board either, you are absolutely the best judge of what is right for your kids, and you can accomplish results beyond belief just by keeping on keeping on and following your heart. Don’t be scared to ask for help, and expect to get it when you ask. A simple “Thanks” is all that you would offer a friend or relo babysitting for you, that’s all that’s needed here too. And look after yourself, you’re a really important person.

To those on the outside looking in, don’t be too hard on those on the inside looking out, it’s hard yacka and none of us get it right all the time. Some of us get it wrong most of the time. Don’t judge us, just try to be around, to be supportive, and to be available to give a hand when needed.

And men, step it up and get involved, you have so much to offer and so much to gain. Many men duck and run as soon as a disability is diagnosed, but the ones like Gramps who stick around and just love their kids to death get so much joy and pleasure from them. And as a bonus, they usually end up with a remarkable woman like Granny to live out their lives with. Let me tell you, that’s a big bonus!!!!!

And everybody else, take Granny’s advice, befriend someone with a disability, your life will be the richer for it.

Granny 3:22 pm 18 Sep 08

Thanks guys!

I forgot all about a meeting this morning and arrived an hour late, and have just returned home! I now need to start getting ready for the special ed election thing tonight.

I really appreciate all your posts! I have so much to say, and will get back to you all tonight.

: )

You guys are awesome!!

Aurelius 11:47 am 18 Sep 08

I think it’s quite revealing, what Granny has bought out here in the last day or so. New Yeah’s comment, about being a kidult, and being insulated from aspects of life such as this, and Loquaciousness’ admission that she never considered her daughter would not be perfect makes me understand Granny’s solitude on this journey.
I have two Downs Syndrome siblings. Both adopted. The first because her mother was a basketcase junkie. In the other though, my brother was given up by a married couple. His mother did not want to adopt him away. But she was dominated by a husband who did not want a ‘flawed’ child in his family. It caused considerable trouble in their family. But both my DS sister and brother have bought endless joy to my parents.
Like so many Granny, you and Gramps could have taken a similar path – rejecting your special child to make her ‘someone else’s problem’. But it’s clear you’re aware of the joys you would have missed out on. Your description of how Gramps took Violet to be his special little one remind me of my father before he died – how his latter years were punctuated by the small joys of his youngest children’s achievements.
Having seen my younger siblings go through the mainstream schooling system, I can see the benefits as well as the pitfalls, and my own opinion is that mainstreaming is a mistake. But that’s a topic for another day.
Good luck Granny & Gramps, Quacker & Violet.

Aurelius 11:33 am 18 Sep 08

Any society is judged on the way it treats its most vulnerable.

New Yeah 11:30 am 18 Sep 08

As me and most of my crew would be classified as ‘kidults’, issues such as Granny’s are not something I have really been exposed to or even given much consideration.

This is a most worthwhile post and thank you all for sharing.

Loquaciousness 11:29 am 18 Sep 08

Quackers said :

Brilliant post there Loquaciousness. Fantastic even

Thank you Quackers and Granny for your responses.

Granny, your original post, and your comment at #22 have made me think about aspects of raising (and nurturing) a child that I never have before. My offer of assistance was made with complete honesty, and your suggestions for helping out have made me much more aware than I was yesterday. For that too, I thank you.

I’m going to ponder this as I go about my day today, and will post more this evening.

Again – thanks.

L

Even if it doesn’t make good economic sense, I think decent society has an obligation to help the disabled in any way it can. When you look at some of the complete rubbish public money gets spent on, it is extremely to to justify not offering a sensible level of support to the disabled and their carers.

chiminee 11:04 am 18 Sep 08

For those of you who just think this is an emotional issue consider this. The return on investment for enabling children with a disability to communicate is enormous for the wider community. As an adult the child will be able to contribute to the community through meaningful employment. They will have the income to support themselves and not be completely dependant on government handouts paid by the tax payer. It makes good economic sense.

Thumper 8:28 am 18 Sep 08

Thought provoking post.

Thanks.

mdme workalot 8:27 am 18 Sep 08

Granny, I have tears in my eyes reading your post – not because I feel sorry for your daughter, but because I get the feeling your daughter is one of the luckiest kids in the world to have a parent like you.

I have a nephew who is disabled, however his mother tends to use this as an excuse to get more attention. I kid you not – she seems to take joy in the fact that he has difficulty doing normal things, and I have always wondered why she does not make full use of the myriad of services provided by the Government to assist him to lead a normal life. I’ve never spoken these words aloud, but I think she may be subconsciously (or consciously – I really don’t know) withholding these services in case he improves, and then he’s not ‘special’ any more and she won’t get the praise for caring for him. This is also a mother who tends to self-diagnose her own kids with serious illnesses on a weekly basis, and then goes to a horrendous and unscrupulous doctor who pumps them full of drugs. I dread the day they actually need medical attention, because I can’t bear to think what effect all of these drugs are having on the kids…

Sorry for going so off-topic, but you can see why I think you are so special Granny. I wish you luck in your advocacy for better educational assistance for your daughter and others like her. She looks like a beautiful young girl and with a caring and proactive mother like you, I’m sure she will grow up into a happy and healthy woman.

BerraBoy68 7:52 am 18 Sep 08

Hey Granny, I know we’ve already spoken off RA about helping kids in need with their education but I have to say, – you rock! (Can 40 year olds still say that without looking dorky?).

My wife has started a new career as a carer for the disable in the ACT – she loves it. She’s combining this with another long held dream of going back to Uni next year (she already hold a Management Degree) to study primary education. She really wants to be a teacher for mentally disadvantaged children. Our own kids are fortunately considered quite smart at school and advanced for their age in their communication skills in no small part to my wife’s love of helping them learn to communicate.

I’m also in the process of helping my brother who has just become a dad at the age of 47. His boy (Josh) was born 12 weeks early (in Feb) and they have just had it confirmed that Josh has Cerebral Palsy although the degree to which he has it is, as yet, unknown. My brother and his wife fear for his future, especially if he can’t communicate or becomes severely mobility impaired. That said, we are fortunate (in a sense) that one of our cousins son’s also has CP and never lets this get in his way, despite his left arm and left leg being almost completely useless. His parents are extremely loving and provided all the care and attention he needs and he now drives a car, plays soccer and has been selected for the development squad for the 2012 Paralympics.

However, being loving and caring can only get you so far, the resources must exist to help all people reach a level where they can at least communicate. Without this basic skill we’re no better off then they day we were born. Worse in fact, as our level of awareness may increase to the point that they know they are completely isolated.

Granny 12:23 am 18 Sep 08

Thank you so much for this post, L. I was quite choked up when I read it. Like you, I knew it was going to take me some time to do it justice.

I know exactly what you mean about never really expecting your baby not to be healthy. Even though you may sometimes feel a twinge of fear during pregnancy, you don’t really believe anything bad can happen to you.

One thing I have realised is that having a baby is a lifetime commitment. It’s not like they suddenly turn 21 and you can go, “Well, that’s it! I’ve done my job now. One child raised and off my hands.” To some extent that will be the case, but the fact is that from the moment they grow that umbilical cord you will never be able to be happy again if they are unhappy.

I think women, in particular, are stronger than we know. How many of our pioneer ancestors buried child after child after child? They still got up. Still did the washing. Still baked the bread. We cope with what we have to cope with in life, and on the whole we are good at it, but I don’t know what I’d do without Gramps.

Some men find it very hard to cope with. Many marriages break down altogether, and often the mother is left to struggle on alone. But Violet has always been the apple of Gramps’ eye. Ever since she was a baby he wanted to push the pram or have her sleep on his side of the room. We were always arguing over who would be the mum!

One time my sister was watching him. Violet was sitting on his knee, and her kids were playing a game that innocently accentuated her disability, but she told me his face was just beaming.

Having a special child is the gift that no-one wants. Everybody tells you what a gift it is, and how you were chosen to parent this special person because you are somehow so saintly. Do they want this gift for their children? Not on your Nellie!!

But there is some truth to all that. From time to time one of Violet’s friends will pass away. As fellow parents we gather together at the funerals and huddle and hold each other and weep. It is their child. It is our child. It is every child. We embrace each other and we say, “We’ve got the best kids,” and we all know it’s true. We love our healthy kids dearly, but there really is a special something about our special kids.

If you ever want to meet a truly beautiful person, befriend a person with a disability. They may swear at you, they may shock you, they may even frighten you; but you will never be the same again.

It’s a bit like visiting a third world country. You come back changed. You are a better you.

I always thought I was ‘good’ at having babies. I was young and strong. My worst problem was that nursing staff would fail to realise I was in labour. When I met Gramps I wanted to have his baby. After four years of trying we had pretty much given up when Quackers came along. Twelve weeks into the pregnancy I was diagnosed with a deep vein thrombosis, which was one of the big four killers of childbirth way back when. After Quackers I miscarried. Then Violet was born.

Needless to say all of these occurrences were a complete and utter shock. I really thought that only happened to other people.

I was never a person who was comfortable around disability. When it became obvious to even us that Violet was different at about twelve months, I even felt ashamed. We adored her, and I felt that if only I could shut the whole world out we could be completely happy.

When I took her to a playground it was like bringing a dead cat to a wedding. Even though a lot of people would try to be nice I could tell they were uncomfortable. I would have to be matter of fact and pretend I was ok, and I wasn’t ok. I would watch the most mean and spiteful children running around on two legs, and still feel ashamed for ‘failing’ society and ‘failing’ my child.

One day I made a conscious decision not to be ashamed of her. I thought, “She is the bravest human being I have ever met. She is gentle and patient and kind. I make no apologies for my daughter ever again.”

I remember when there was some terrible massacre of children in England some years back, and one of the parents commented that it is amazing how much of our children is actually tied up in their future. So much of the grieving is for the things they will never do, the graduations and weddings that will never be, the babies they will never hold. All those little hopes and dreams that you weren’t even aware that you had for them die too.

It is always worth appreciating how very rich we are, and where our true riches lie. I also feel very thankful for what I have.

Nobody has really ever asked me before if there was anything they could do. I think that is what has affected me so deeply about your post. The truth is I have never thought about it. I am going to ask some of the other parents next time I see them, just out of curiosity.

I would suspect there are many little things that can make a difference to a carer. The single mums, of course, could always use a bit of practical assistance with some of those bloke things. That can be incredibly difficult.

For me, it’s things like my kid doesn’t get invited to parties. My kid doesn’t have friends. Even within the family, the other children are invited out to sleepovers or a trip to the zoo, but never Violet. People don’t usually look at her. They look away.

Mostly, I guess, just let us know that you’re with us. If you can make it to things like tomorrow night then please come and stand with us. There are not a lot of us out there, and we don’t have a large voting block or a lot of influence. There are no other children in Canberra with what Violet has to my knowledge. There are only 70 kids in our school. It would be nice if the community would go, “We are with you, because this is about human rights and we care about that.”

As Horton says, “A person’s a person, no matter how small”.

Granny 11:11 pm 17 Sep 08

(Quackers is ‘Violet’s’ sister. She really wanted to post).

Quackers 11:05 pm 17 Sep 08

Brilliant post there Loquaciousness. Fantastic even

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