What Do I do About My Disabled Child? Potential Versus Problems

Robert Frost

I have noticed that there are two distinct paths you can tread when you have a disabled child: I call them the path of problems and the path of potential.

You can manage your disabled child’s problems and you can help them reach their potential. You can do both at the same time sometimes, but not always.

Sometimes managing their problems actively stops them reaching their potential. In rarer cases, striving for their potential can lead to more problems.

But that’s starting to get confusing.

Let’s deal with the first path:

Problem: from Ancient Greek meaning to throw before. The root of the word problem can also be found in the words devil, symbol and interestingly, ballet.

The problems a disabled child has can be defined as the challenges thrown before you.

I see problems as being that part of a person needing the attention of a specialist.

There are many services provided by the government to support you if your child is disabled.

You can see a host of specialists, such as occupational therapists, physiotherapists, speech therapists, orthopaedic surgeons etc.

Don’t get me wrong, specialists are important and necessary. However, specialists view your child in terms of their own speciality. That’s what they’re trained to do.

A Specialist, by nature, cannot deal with a whole child

A specialist is not particularly trained to recognise a child’s potential, nor are they trained to help a child reach that potential. A specialist’s goal is to help a child overcome their problems. It’s a fine, but significant difference.

If a child under the care of a specialist takes steps toward reaching their potential, all the better. But that is not the primary focus of a specialist.

Chloe’s Story

We went to see an orthopaedic surgeon when she was barely four months old.

Her feet and legs were put into plaster casts (called “serial casting”) and she was put on the waiting list for surgery.

Every Thursday morning, for endless weeks, I would get up at the crack of dawn and soak her legs in the bath so that the casts could be taken off and re-applied to accommodate her growing feet.

We were public patients, which means that we didn’t have private health cover. It also meant that we would queue for hours surrounded by all manner of parents and children in various states of casting, waiting for our three minute consultation with the specialist.

I don’t mean to sound ungrateful, Australia has one of the best public health systems in the world and we were lucky to not have to pay for Chloe’s medical care, but sitting for hours with this tiny baby whose legs often weighed more than the rest of her body put together, with this hot and itching plaster footwear, was sometimes quite harrowing.

The surgeon would appear, late more often than not, and walk past the two rows of parents and children like a red carpet celebrity, waving and winking and soaking up the general gratitude and admiration.

When it finally got to our turn, he would sever and reapply Chloe’s casts with production-line efficiency and look at me with that “What do you mean, ‘What do I do?’…You’re not qualified, dear!” expression that makes me so enamoured of medical specialists.

Walking off with no questions asked or answered and a look from the surgeon that said, “See you in theatre” but might as well have been “See you in Hell”, I was always left with the impression that we could do better.

So I took her off the waiting list for surgery and cast my net further for possible alternatives.

We found Kevin Ryan, in my opinion one of the most highly skilled osteopaths in the country if not the world.

His work with Chloe, even on a monthly basis, made an enormous difference to her sleep, her digestion and her mobility.

I consulted him re his opinion of her feet and he reassured me that their shape wasn’t causing any problems with her hips or knees or with her walking.

He also advised me that I seek and embrace the surgical option, if that’s the call I wanted to make, but that I have a conversation with the surgeon that should go something like this:

ME: “Have you ever seen feet like Chloe’s before?”

SURGEON: “No.”

ME: “Goodbye.”

Or

ME: “Have you ever seen feet like Chloe’s before?”

SURGEON: “Yes.”

ME: “Have you ever operated on such feet?”

SURGEON: “No.”

ME: “Goodbye.”

Are you getting the general idea? Or:

ME: “Have you ever seen feet like Chloe’s before?”

SURGEON: “Yes.”

ME: “Have you ever operated on such feet?”

SURGEON: “Yes.”

ME: “Did it make a significant, positive difference to the child’s life?”

(You know what I’ll say if the answer’s no, so let’s go straight to “yes”)

SURGEON: “Yes.”

ME: “Can I talk to the parents?”

Again, if the answer is no, there would have to be a pretty good reason.

This may not solve the entire problem, but can you see how this puts me into a position of power of choice?

Chloe never had the foot operation and her feet are still turned in. This doesn’t affect her function and she remains with the feet she was born with and that her brain knows how to control.

So what if they’re shaped differently from most feet? She can still use them well.

To my mind, the medial release operation would have been nothing more than cosmetic surgery. It just wasn’t acceptable to me.

It’s not too late to change my mind either, and I feel that I can look into this option with much more confidence than I previously had.

Loving the First Seven Years

When we get obsessive about solving their “problems”, we can sometimes forget this way of loving.

So what do we do? How do we make a decision?

Let’s consider the other path: potential

When you relate to your child in terms of her potential, rather than her problems, your focus becomes more about what you can help her receive from her environment before problems develop.

Ask not what your child can do for you, but what you can do for your child.

Practitioners who work with the whole person on this path are such people as

• naturopaths

• homeopaths

• chiropractors

• osteopaths

• kinesiologists etc.

They are often referred to as alternative or complementary therapists.

Their work is not subsidised by the government in the same way that speech pathologists, doctors and physiotherapists are, thus robbing carers of their power of choice of therapy.

This is a scandalous state of affairs and needs to change.

But, again, more on what the government ought to do later.

When my focus shifted to Chloe’s potential, I became less worried about how she was performing in relation to her developmental milestones (i.e. what she could do for me), and became much more interested in finding out where she was on a scale of development, what the next stage was and how I could help her reach that stage (i.e. what I could do for her).

"The time schedule [of human brain development] is highly variable and depends, not upon genetic factors, but rather upon the frequency, intensity and duration of the stimuli provided to the brain by the child's environment, which is notably and most often his family."Glenn Doman

For more information about the Developmental Profile go to the Glenn Doman Developmental Profile Three functions are defined as receptive and three are defined as expressive. One set of functions affects the other.

The receptive functions are to do with the information a child receives from her environment. So they are

• sight,

• touch and

• sound.

The expressive functions are to do with the things a child can physically show. So they are

• how well a child sees and how a child interprets visual information (the ultimate function being to be able to read);

• how well a child feels things, as you must be able to feel to move in a meaningful way;

• how well a child hears and how much auditory information a child has, for then a child can use sounds to communicate.

All human development is to do with how well a person can use these functions (or in the case of a blind, paralysed or deaf child, how well a child can use other means of interpreting information from her environment and expressing that information).

When you have functional tests done by specialists in any one of these groups, a lot of the assessment is to do with how a child expresses herself.

That is why we have cases of extremely bright children in paralysed bodies, or bodies they are unable to control, who are often thought to be intellectually disabled, even though they eventually prove everyone wrong.

What you express isn’t necessarily what you receive. Society, and even specialists, are beginning to understand that.

That’s why knowing the six developmental areas and being familiar with the stage your child is at and the next stage, helps you understand their potential.

Chloe’s Story

She was at the stage below that, where she could move her arms and legs and push her trunk around.

We knew what she needed to do, by consulting the Developmental Profile and so her immediate potential was clear.

Now there is an important principle here, and that is: the brain grows by use. So if you want your child’s brain to grow a certain way, then they must use it.

It wouldn’t have occurred to Chloe to move her arms and legs in a cross pattern, the movement so essential for crawling. Her early development here had been quite restricted, due to the casts on her legs (see problems above).

Instead, we moved her arms and legs for her, in an exercise called patterning, giving her brain that much-need information to grow the pathways to get her crawling independently.

Eighteen months of almost daily exercise paid off. She is a fantastic crawler and is now pretty good at walking too.

Loving the First Seven Years

The first seven years are the golden years for this type of therapy. After that, your child’s brain growth slows somewhat, although please bear in mind that it is never too late to make a difference to anyone’s brain function.

In my literacy and language clinic I have students of all ages and abilities and there isn’t one, from kindergarten to the age of eighty that I haven’t been able to help.

This is not to do with the sort of therapist I am, rather, it is to do with the amazing capacity of the brain, any brain, to learn and grow.

This is where the enjoyment really came in for me.

With the help of the Doman programs, overseen by an extremely gifted human developmentalist called Lidwina Van Dyk, I and my army of volunteers worked with Chloe constantly.

In another article, we will look about how to build that army.

We showed her "bits of intelligence", such as words, pictures, series of information on composers, plants, planets, everything under the sun.

We swung her in a blanket to help her balance.

We cross-patterned her every day to help her crawl.

We let her touch a range of surfaces and textures, just as a normal, more mobile baby would touch.

She missed out on very little during her baby years and was immersed in a rich, loving, stimulating environment.

She is a very happy girl with a deep intelligence. It is natural for me to treat her as the clever human being that she is and I demand that others do the same.

She is sensitive and socially conscious, so the way she was spoken to and treated in her early years had a very positive effect on her quality of life.

I might wait all my life for her to run and talk and do all those other things, but that’s okay. We bonded, we had fun and I’m finely tuned into her needs and wants because of the work we did together.

All the fun and closeness aside, I cannot definitely say whether her early programs made a difference to her intellectual or physical development, as I have no control group (though in my heart I know they did).

But I can say that they made a difference to me and to everyone who helped her, and that has made all the difference.

I chose to tread the path of potential most of the time.

It’s a fairly lonely path. The government and the medical establishment, for various reasons, do not support the existence of complementary therapists or practitioners outside the system.

I won’t get started on the reasons for this, as I cannot directly influence it at this point. I have found it useless to argue about, for example, homeopathy or immunisation with doctors.

So I don’t.

My energy is better spent loving my daughter. And besides, the burden of proof isn’t on me. But like I say, don’t get me started…

On every medical issue I consult the best osteopath and homeopath I can find, as well as the best doctors and surgeons, and I make decisions based on what I’ve learned from that team and from Chloe herself.

I keep in mind that I am Chloe’s specialist. Who else knows her and loves her as I do? I take pride in my job.

I do make small detours to the problems path once in a while; these paths are not mutually exclusive.

What the Problems Path has been good for:

• financial support, including disabled parking stickers, carers allowances, some limited respite funding (there needs to be more of this), grants for equipment, reduced medical fees;

• carer/caregiver support, including networks of carer groups, respite centres, counselling and carer subsidies. In Australia, carers are finally being recognised for the jobs that they do, though we have a long way to go before that recognition becomes real support;

• health services, including access to specialists when needed.

Loving the first seven years has meant embracing my role of specialist to a vulnerable human being.

My dream is to be recognised and treated as such, not least by governments who provide meagre “respite services”. But more on that in the chapter on self-care.

With Chloe, the choices and decisions have been huge – and though the results of those choices seem plain to me – I have no way of knowing what the outcome of a different choice would have been.

All I can know is that I am happy with my choices because I have been actively involved with my beautiful daughter to an extent that is right for me.

Often I take the road less travelled, but I know that the beaten track is also there and open to me and I have sometimes been glad to walk down its comfortable, well-lit, populated trail.

I have learned to stand at the crossroads and make conscious, considered decisions and to stand by those decisions.

I have loved this first seven years because I have learned that once you make a decision, you go with that decision, and all the rest of the doubt, uncertainty, criticism and controversy that goes with making any major decision, is just noise.

This is the road to peace.

Your Disabled Child: How to Love the First Seven Years

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