I've wanted to write something, anything, to the parents of those newly diagnosed for quite awhile. I feel like there are many well-intentioned parents who want to do what's right for their kids and above all, want to see them succeed, but just don't have the right information or tools in order to do this. This isn't the parents' fault. This is the fault of "professionals" and the media and how we talk about autism.
I’ve been reading a lot of posts written by bloggers responding to the daily prompt ;
Write a letter to yourself 20 years from now.
Many of the letters, especially those written by parents to their children, anticipating that their children will be grown up and living independent adult lives of their own in 20 years time, have made me consider both my own future with my son and the many privileges those with non-disabled children take fore granted.
Before I continue on with this post, let me just put it out there, that the future is somewhat of a scary place for me to think about and it always has been.
Ever since my son with special needs was born, the next month, the next week, hell at times, even the next day, have all seemed like moments in time that were either too far away or simply too scary for me to contemplate.
The future for me has always been the great unknown.
Something that would happen some how over there, off in the distance, in a land well beyond the grasp of my own limited reach.
The here and now, the present, has always been so full on, so filled with one form of crisis or another.
For years I was told that my son wouldn’t walk, talk or ever function normally.
Still I persisted in taking him to therapy.
By the age of 4 he was walking.
Well kind of.
Sure he needed a kiddie sized walking frame to hold on to, but he was walking.
By the age of 5 he was talking.
Well kind of.
He was beginning to make the sounds of the first letter in his own first name.
By the time he was 6 he was walking independently and speaking the odd word.
No sentences, just words.
And that was fine by me.
So for me, every idea of what the future would, could or even should be, has already changed so drastically over the course of my son’s lifetime, that I hardly dare to dream of what the future may bring.
But never the less, here is the letter that I hope with all my heart will describe me in that far off distant land 20 years from now.
Remember all that you have done in the last 20 years and just for once,
Let yourself celebrate.
You have gotten all of your children, and especially your son, safely through High School.
You have seen them all graduate from college successfully along with their peers.
Even when it meant that you had to go in and work voluntarily as a full-time aide for your son.
You know that you have helped the one who has needed you most,
Live a life that has been as full,
In every possible way,
Each and every day.
Even if it meant,
That when there were no clear paths laid out before you,
You went in and carved out your own.
A pathway that in the end,
Was not just wide enough for two,
But one that was wide enough for all of your sons special needs peers,
And their parents to walk through after you.
Remember that when there were no gates for you to walk through,
You didn’t give up.
Instead you hammered away against the walls of prejudice,
Until they’d crumbled into fences.
Once those fences appeared,
You set to building a gateway.
Once that gateway was in place,
You lifted your son’s hand,
And helped him lift the latch.
And kept him balanced,
As he tentatively nudged it open.
Once opened you stood behind him,
For moral support,
And watched as he independently,
Walked on through with his head held high.
In these last 20 years,
You haven’t changed the world,
Or even come anywhere close to it,
But you have changed your son’s life,
Refusing to let others treat him as if he weren’t as important,
Or as valuable a member of the family,
As his brother and sister.
Who have now both long since graduated university,
And gone on to become equal rights lawyers.
See all those years of world-class arguing were worth it.
You did it.
He did it,
They did it.
And most importantly of all,
As a family,
We did it,
We made it through.
So cut yourself some slack,
Just for once,
To sleep the whole night through.
You have many battles ahead of you but,
It will be all right,
I promise you.
You will all make it through.
- a letter to me, from me. (empowermewearethechange.com)
- A Mothers Love (curlybraceavenue.wordpress.com)
- The Dark Side (jeffdavidson.wordpress.com)
- Pathways (damiology.wordpress.com)
After watching the debate on Insight regarding genetic screening I have to say that I am more concerned than ever about the increasing push to expand the reach of genetic screening onto unborn baby’s.
Among many of the issues raised but not discussed, were the questions of just what sort of message are we sending to children and adults who are currently living with disabilities or genetic conditions that are now openly being described both publicly and professionally as having diseases that are presumed to greatly diminish their quality of life?
Don’t such ideas fly in the face of all the achievements that those within the disability movement have fought so hard and long for?
Are we now to turn our backs on the rights of the disabled just because umpteen different variants of the human condition can potentially be screened for and eradicated before birth?
Two of the panel members debating this topic did indeed hold the distinction of having the very genetic conditions being labeled by other panelists as diminutive of their life.
Both disagreed with the underlying premise that having a disability or a genetic condition necessarily diminished their capacities to live a full and rewarding life.
Both flagged their contention over the possible harm such statements might cause to those already living with such conditions.
However, their further contention that viewing disabilities in this way may cause an erosion of the health care services that so many rely on to live their lives was significantly silenced by the story of a mother with a severely disabled child who stated that, if genetic screening had made her aware of her son’s condition prior to giving birth to him, she would have terminated him.
The question was then asked of her by one of the panelists with a disability, whether or not having better support and care services available to both herself and her son, might have made her change her mind, and decide that her son’s life would still be worth living.
To which the mother replied, that having better support services would make her life easier, but that they would not necessarily maker her son’s life any better. So no, the potential for having greater support services would not make her changer her mind on this issue.
As the mother of a much-loved son with Autism, I found myself torn by this debate.
My pro-active side wanted to agree whole heartedly with the need to pull back on the reigns of prenatal genetic screening and to scream at the protagonists who were all gung-ho for it, that my son, like thousands of others, although differently able, is still a sentient human being with loves and hopes and dreams.
A human being whose right to life is just as pertinent as anyone elses is.
Yet, when I looked more closely, there was another side of me vying for my attention.
The side of me that drank in and acknowledged that other mother’s pain at having to watch her severely disabled son suffer daily seizures and take in her anguish at knowing that her son’s genetic condition could have been tested for. That she’d even asked for it to be tested for, and yet that testing had not been carried out.
As a consequence of this she felt let down and betrayed.
Left with a life that she was not prepared for and was not of her choosing.
Yet despite this, her anger and sense of betrayal was not directed at her son,whom she loved and has devoted herself to caring for, but at the physicians in whom she’d placed her trust all those years ago.
To me this issue and the way it was presented begs oh so many questions.
If we place our reproductive trust purely in the hands of physicians then how do we know that we won’t all end up being betrayed?
If a woman, who has already decided that she is not willing or able to raise a disabled child asks for genetic screening, is she wrong to do so?
And if she’s not wrong, then why are we even having this debate about genetic screening in the first place?
On the flip side of the above thinking is the question of whether or not this is even an issue that can be succinctly condensed down into the auspices of a woman’s choice ?
Some how it feels as if it is an issue that is so much broader and more intricately embroidered within the more fundamental question of what it actually means to engage with the human condition in all it’s many and varied forms.
I cannot see how something so big could possibly ever be defined by the parameters of personal choice alone?
And if it ever is then what are we to think about the right to life?
Would that right to life then only apply to those who have a genetically screened and superior right to life?
Would we all begin to live in Huxley’s ‘Brave New World‘?
And what would happen to the disability care industry if our governments voted to open the flood gates on genetic screening? Would it slowly crumble and then fade away because hypothetically its potential for market growth would be destroyed? Leaving the thousands who currently already rely on and need that support floundering within an even more inadequate system of care?
Would it go from boom to bust with the stroke of just one bureaucratic pen?
Just where is the line in the sand to be drawn?
And what will that line, where ever it is placed, say about us as a society?
Will it define us as a society capable of holding more than one definitive way of valuing life of decry us as a race of Darwinian beings interested only in producing selectively superior progeny?
- Prenatal Genetic Screening – a parental obligation? (livingontilt.wordpress.com)
- We are all much more than the sum of our DNA (thepunch.com.au)
- Will genetic testing change life insurance? (pinnaclelife.co.nz)
- How genetic screening could work (telegraph.co.uk)
- New Guidelines on Genetic Screening of Kids Seek Bigger Role for Parents (sciencelife.uchospitals.edu)
Regular Parents vs. Special Needs Parents
Parents, a stranger walks among you. We look like regular parents but we are the hybrid to your standard engine. Our child’s disability altered us, enhanced us. Many words describe us: resilient, creative, protective, emboldened, sympathetic, fierce and determined. We are special needs parents. How do our lives stand apart from your own? Take a look under the hood and see for yourself.
Swaying her hands from side to side,
We are going to sing ‘Grandma’s Glasses,’
Her hands already beginning ,
To mimic the form of imaginary glasses,
Raising her hands to her head,
She smiled them into readiness,
Before boisterously beginning to sing,
With her fingers signing along
She became a symphony of sighted sound,
An unheard singer,
With a silent song,
Performing the small miracles,
Of transitioning children’s effort’s
From the world of can’t to can
As each child’s hands,
Forming their fingers,
Like kissing twin O’s
In front of their own glee filled faces.
These are the moments she lives for.
The snatching of seconds,
When soundless lips,
Tasting the grins,
While the recent controversy over the latest changes to the DSMV regarding autism diagnosis continues to grow, I can well understand why those currently outside of the autism arena, may be either unclear or generally unaware of just what it is those within the autism community are getting upset about.
Given that the latest round of statistical estimates state that now 1 in every 88 children born are sitting somewhere on the autism spectrum, I’ve put together a few reasons to encourage anyone outside the area of Autism to become aware of the changes taking place.
-Do you already have young children?
If so there’s a high chance that your children will be in a class with a child with Autism at some point, if not several points, during their own schooling experience. An increased awareness of Autism might help you as a parent support and encourage your child’s acceptance of children with Autism around them.
-Are you likely to have children of your own in the future?
-Do you have brothers and sisters that are likely to share the joy of nieces and nephews with you?
The current statistical figures indicating that 1 in every 88 children experience some form of autism represents a continuous increase in the number of children being diagnosed with Autism over the last 50 years.
As yet we do not know if that figure will keep increasing. Going by trend alone, there is anecdotal evidence that it may well continue too. If so, sooner or later, the chances are that your life may be personally impacted on by the potential diagnosis of a close relative with Autism in the future. A little bit of knowledge now may help in the future.
-Are you a teacher?
If so you will already know the many issues facing both teachers and schools as they try to incorporate successful teaching strategies for their students with autism. As a teacher the more knowledge you gain on the subject of Autism the more effective you may be in the classroom as the rates of Autism rise.
-Are you thinking about becoming a teacher?
If you are thinking about becoming a teacher it might be worth your while developing a clear and early sense of what teaching those with Autism may mean to you before you embark on your professional career. This may give you the time to build on gaining experience with special education strategies before striking out into a classroom.
Below I’ve put together a bunch of blog links that offer some fantastic, insightful and diverse overviews as to what the changes in the DSMV concerning Autism are for both individuals, professionals and families.
Thank you for taking the time to read this post. I hope it has been useful. Please feel free to share your own perspectives and add your own links in the comment section below. Cheers Seventh : )
As parents we often feel that we have to stand up for the needs of our children.
We feel this because time and time again we are shown that if we don’t stand up for our children, they get left behind or negated within education and shut out from being able to access valuable and life changing services.
The simple truth of it is, that in standing up for our children, 9 times out of 10 we are going to be perceived as asking for something extra, rather than being seen as stepping up and asking for what is required.
As parents we are told that we have to be thick skinned and most of us try to not let the barbs of others get to us.
The reality of this is of course, that some days, not letting others get to us, is so much easier said than it ever is done.
After all we are only human and as both parents and humans, none of us want to be seen as the bad guys, for trying our best to get the job done.
Though often, we are perceived as ‘the whining mum who is never happy’, ‘the squeaky wheel’, or the ‘attention seeking, disgruntled, parents’, forever asking for more.
The reality is, we don’t want to be the one’s constantly having to fight for our child’s rights. We will if we have too. But what you, as a society, still don’t seem to be understanding, is that we do this because we are too often given no choice.
The truth is, we’d rather not have to too keep fighting.
We’d much rather be shown that you as a society are ready to welcome, support, accept and value our children with special needs every bit as much as we do.
You want us to stop fighting for out children’s rights?
You want us to stop being the “squeaky wheel”?
Well guess what, we want that too.
More than you could possibly ever imagine.
So if you really want us to stop, then it’s up to you to show us, that you are ready to welcome our children, teenagers and young adults into society with full and equal, open transparency.
To do that you have to:
Put away your prejudice’s,
Put away your calculators and ratios of fiscal outcomes,
Put away your cost benefit analysis.
In short, you put away your blatant multi-tiered and carefully crafted layers of systemic, economic and social discrimination, first and then we’ll gladly stop.
Until then…. I hope those of us that have too, keep on standing up.
- Parents asked not to confine children with intellectual disability (ghanabusinessnews.com)
- It Really Does Take A Village To Raise A Child. (whatwouldshethink.com)
- The Middle Child Syndrome (everydayfamily.com)
- Inversion of Authority (farmerblog.typepad.com)
There is an old English saying that goes something like, ’the wearer knows best where the shoe pinches’. I guess it’s the precursor of sentiments like ’walk a mile in my shoes ’. It think in part these statements encompass our desire to have another person know and understand the elements that make up our lives .
These sayings remain with us because essentially they are true. None of us, not one of us, can ever lay claim to knowing how if feels to live another’s life by looking at it from the outside.
This is my attempt at trying to give voice to some of the experiences that make up my own existence.
A Trip to the DVD Store, Simple Huh? Think Again.
Each step my son and I take into the realm of public spaces can equate to the emotional and physical discipline of climbing a mountain.
Mount Public Perception.
Unlike real mountain climbers we have no nifty tools tucked away inside a well organised back pack. No ropes to secure ourselves to each other’s sides in case one of us loses our footing and tumbles into the void.
The tools we cling too when climbing Mount Public Perception are little more than nice clean clothes, a brush, makeup, clasped hands and the hope that we can make it out unscathed by the thoughtless words and the stares of people who hold no understanding of what it is like to have to negotiate this world with a child whose way of being is constantly marked out as different.
When my son I venture out into public places we have only the comfort of hands and the fragility of interlocking fingers to hold us together. We make of our bodies a small but certain guide rope of safety. And in so doing we assert our bodily boundaries as one.
Connected, we head to the DVD stores sliding doors, which my son has convinced himself, he alone has the power to open and close with the will of his mind. He commands the doors to open with a tilt of his head and a swoosh of his arm. He nods at me. And we enter his Mecca. His holy land in which all things play station reside.
A man stands and stares at us from the service counter as we approach. I keep my eyes on the man’s face as we draw closer to his space.
I am looking for clues.
Facial signs that might declare him to be either friend of foe. But he makes no effort to either smile or turn away.
My son says his version of “hello” but the man simply remains in his position. He makes no verbal response. No smile. Nothing. He just stands. Stationary. Staring. His scrutiny of us only just beginning.”
Inside the store my son tells me that he wants a special play station game…but he can’t remember what it’s called. Only that it has Spiderman, the Green Goblin and Batman in it.
I tap my foot as we stand hand in hand in front of a vast array of play station games. Displayed unhelpfully on crowded shelves with only thin multicoloured spines denoting where each one ends and the other begins. I breathe deeply and try not to let the frustration that is flooding my body reflect in my voice. I keep it calm, soothing. ’We’ll find it’ I tell him as I fold my body down into a crouching position, hoping in vain that the simple act of getting a closer look will somehow solve the problem.
This is going to take some time.
For many within the Autism community any attempts to find a causal connection for Autism are seen as some form of insult . As if seeking answers in some way denies people experiencing Autism their identity or devalues their different ways of being in the world. For me as a parent I can tell you that this simply is not true. I seek answers because I want to better understand how my son relates to this world.
I’m not seeking to eradicate Autism or cure my son. I love him just the way he is thank you very much. To my mind, if we can understand exactly what causes Autism (if indeed anything one thing at all does) and how Autism effects individuals then we can gain more insight into what it is our children truly experience and what it is they truly need, not just from us as parents, but from society as a whole.
Isn’t that worth knowing?
I think it is and I have to admit that I honestly don’t see how seeking to obtain such knowledge either denies an individual with Autism their identity or subsumes their right to be who they are, as they are?
As parent’s we are usually the only voices calling for the rights of our children to be upheld in real world, day to day terms. As parent’s we are often also amongst the strongest voices demanding that society accepts and honours our children for who they are, however they are, as they climb into adulthood.
As parents we are united on so many different fronts and yet the Autism community itself appears to be divided on this and many other issues. To the point where parent’s are now being categorized as falling into any one or more of several different camps.
-Those who believe Autism to be a natural human condition and those who do not.
-Those who pesue the concept of a cure and those do not.
- Those who are anti-vaccine and those who are not.
- Those who feel the need to seek answers and those who do not.
I find these endlessly occurring divisions to be nothing short of futile when the main commonality that we all share is that we love, accept and cherish our children, teenagers and adults with or without Autism.
There is simply too much confusion being generated by the insidious ways the debates surrounding the cause and effects of Autism are being framed up. The truth is that you can equally find yourself in all the above listed camps at one time or another. As it is many of us have a foot in two or more camps. No matter the juxtaposition at play no one camp can claim exclusive rights to either the experience of or understanding of Autism.
Despite claims to the contrary, no one is denying their child anything by seeking to love, support, and understand the aetiology of their child’s Autism.
To think otherwise is to follow the misnomer of division which equally creates and perpetuates the type of pure conjecture that many within the Autism community are currently experiencing.
Isn’t it time we all sought to support each other?
If there were a definitive answer as to what causes autism and a clear logical pathway to understanding both the effects and the experience of Autism….
What would it change?
Would it change the way you love your children?
Would it change the amount of love you have for your children?
Chances are the only thing it might change may be the way others in society respond to and understand your children.
Would that really be such a bad thing?