Autism and Reverse Discrimination – When Special Needs Equates to A Lack Of Consideration

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I went to collect my almost 17-year-old son from College today, only to find myself being dragged into an impromptu meeting with the head supervisor of his Special Needs Unit and the parent of another 19-year-old student.

So what crime had my son and the other student committed that had the Special Needs Unit in such a tizz?

Well, my son and his friend, had decided that they‘d had enough of being surrounded by people all day, so they’d cut their last class and were found sitting, talking quietly together outside the SNU on a bench.

Oh my god!!!!!!!!!!

What an apparently, absolutely awful and completely inappropriate thing for two young adults with Autism to choose to do!!!!!!!!

How dare they even try and act like “normal” young adults who are capable of making their own decisions regarding their state of mind and choose to take up a small piece of quiet time at the end of the day for themselves, instead of entering once again into a noisy class room.

For making this choice, both my son and his friend were not only hauled over the coals, but both had their parents snapped up in the College car park at pick up time and dragged into an overly serious meeting regarding the “consequences” of said actions”.

I’m sorry but  personally I felt embarrassed to be there, in that meeting, with those people, who were all condemning my son and his friend, for  making the very choices and taking the very actions that they undoubtedly see every other non-autistic student at that College  being able to make for themselves every day, without so much as receiving a second glance by their teachers, let alone suffering the indignity of a reprimand from their head supervisor in front of their parents.

My son chose to go to a main stream College for a reason and that reason did not include him being treated as if he should hold fewer personal rights than any of the other non-autistic students at that campus.

He chose to go to that College because he wanted to continue his education in a ‘normal’ environment and be viewed as a ‘normal’ student.

Yes he has Autism and so does his friend, but that shouldn’t automatically mean that they both forfeit the right to act autonomously occasionally, should it?

Neither left the College Campus.

Neither committed any acts of vandalism nor even tried to do anything particularly wrong.

Neither were being loud or in any way disrupting the learning experiences of  other students.

Neither were being inappropriate with each other in any way.

All they were doing was talking, quietly, on a bench that could be easily seen right outside the window of the SNU.

In comparison to some of the actions of the  ‘normal’  students on that campus  whom I’ve seen walking around swearing loudly, pushing into each other and even in one extreme case punching holes in the wall, my son and his friend were thoroughly tame, well-mannered and despite being without ‘teacher supervision’, were well-behaved.

Yet both my son and his friend found themselves being spoken too as if they were naughty 6 year olds instead of being 17 and 19 years old respectively.

Never once, despite all of the things I’ve seen on that campus, have I ever seen any other students there, being spoken too as if they were an errant child instead of a young adult, by the staff .

So I sat in that meeting, much like my son, cringing from the injustice of it all and realizing silently that speaking up, in this environment,  would simply never be an option at all.

I watched my son grow  paler and paler as the head of the Special Needs Unit grumbled on  and on at him and wondered why it was that this supposedly educated and well seasoned disability support worker could not see the enormous and incredibly negative impact that his words were having on my son.

My own  sense of hopeless sadness growing as the effects of the blows that each negative word, spoken to  my son, had on him.

Taking from him the strength of a head held high and reshaping  his body with deliberately hunched shoulders and a bowed head that averted his gaze from everyone in the room and instead remained stoically focused on burning holes into the floor, with his sad, angry eyes.

When the grumbling had finally come to an end I asked my son if he had anything that he’d like to say but his mouth had formed itself into a thin hard-line.

His words were once again locked inside of him.

He was going into shut down mode and all he could do was glare at the floor and shake his head.

Now, instead of looking forward to going to College tomorrow, as he normally would,  my son is terrified that he might once again make the mistake of thinking and acting for himself and perhaps risk being expelled because of it.

He is equally as terrified that when he goes to College tomorrow that his friend may no longer want to remain friends with him.

It seems the tirade of today has done nothing but reinforce the sense that there is some kind of invisible separation between the rights of my son and the rights of other students at the College.

The reactions of the staff  have done nothing but induce fear within my son.

So accordingly, I can’t help but wonder just where the equality is to be found in any of their dramatic over reactions?

I agree that ideally, my son and his friend should not have ditched their last class, but, what College student isn’t equally as guilty of occasionally doing the same thing, only without all the encumbrances of the embarrassment and fear, that my son has now experienced?

Doesn’t anyone there understand how amazing it is for my son to have a friend that he feels he can genuinely share his time with?

Why does it always seem, that the very measures that are put in place to help my son, too often end up hindering him?

That instead of giving  him a sense of empowerment, these measures end up robbing him of the right to direct his own personhood?

“Love isn’t in your eyes baby girl, it’s in your heart”

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I see your true colors,

Even when others don’t!

Love isn’t in your eyes baby girl,

It’s in your heart.

By

Tammy Faye.

High Functioning Autism in Females – Addressing the level of misdiagnosis reported by parents of daughters with Asperger’s Syndrome – High Functioning Autism

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Figures derived from a national survey on the experiences of parents with young adults on the Autism Spectrum conducted in Australia last year indicate that out of the 203 parents who responded to the survey only 44 reported having daughters diagnosed as being on the Autism Spectrum.

30 of who were diagnosed specifically with having Asperger’s Disorder / Asperger’s Syndrome.

This stands in stark contrast to the 152 parents who reported having sons diagnosed on the Spectrum.

For this reason the information provided by parents with daughters on the Autism Spectrum is considered to offer a previously unexamined snap shot of the previously unrecognized  parental experiences that are  unique to parents of daughters on the Autism Spectrum.

Mothers of daughters within this survey reported that they had to struggle with professionals who were either unaware, ill-equipped or in some instances entirely unprepared to diagnose girls with High Functioning Autism/ Asperger’s Syndrome, Asperger’s Disorder.

As a result many mothers, such as a mother whose daughter wasn’t diagnosed with Asperger’s Disorder until the age of 44, reported having their children regularly misdiagnosed over the course of several years due to inappropriate professional biases towards them as mother’s and a clear lack of understanding as how Autism presents within girls.

The rates of diagnosis and age at diagnosis for girls with Asperger’s Disorder/ Asperger’s Syndrome or High Functioning Autism are further reflected in the statistical data.

Parent Gender

Year of Birth Diagnosis Age at Diagnosis
Mother 1989 Asperger’s Disorder 12
Father 1981 Asperger’s Disorder 26
Father 1986 Asperger’s Disorder 12
Mother 1991 Asperger’s Disorder 19
Mother 1986 Asperger’s Disorder 14
Mother 1988 Asperger’s Disorder 12
Mother 1984 Asperger’s Disorder 13
Mother 1975 Asperger’s Disorder 20
Mother 1995 Asperger’s Disorder 7
Mother 1991 Asperger’s Disorder 13
Mother 1992 Asperger’s Disorder 15
Mother 1988 Asperger’s Disorder 20
Mother 1964 Asperger’s Disorder 44
Mother 1992 Asperger’s Disorder 16
Mother No Record Asperger’s Disorder 26
Mother 1978 Asperger’s Disorder 20

Mother

No Record Asperger’s Disorder 7
Mother 1985 Asperger’s Disorder 10
Mother 1975 Asperger’s Disorder 26
Mother 1998 Asperger’s Disorder 12
Mother 1983 Asperger’s Disorder 18
Mother 1972 Asperger’s Disorder 26
Mother 1989 Asperger’s Disorder 12
Mother 1992 Asperger’s Disorder 18
Mother 1989 Asperger’s Disorder 13
Mother 1986 Asperger’s Disorder 9
Mother 1992 Asperger’s Disorder 14
Mother 1984 Asperger’s Disorder 9
Mother No Record Asperger’s Disorder 7
Mother 1987 Asperger’s Disorder 15

The youngest age at which girls identified as having an Asperger’s Disorder were reported being diagnosed within this survey was that of 7 years, at which only 3 girls, were identified.

2 girls were reported as receiving their diagnosis between the age of 9 and 10 years.

8 girls with Asperger’s Disorder were reported as receiving their diagnosis between the ages of 12 and 13 years.

11 girls were reported as receiving their diagnosis between the ages of 14 and 20 years.

7 females were recorded as receiving their diagnosis after the age of 21.

This indicates that the most likely age range for girls with an Asperger’s Disorder or Asperger’s Syndrome to be diagnosed is between that of 14 and 20 years.

The oldest reported age of diagnosis for a female with Asperger’s Disorder by a mother within this survey is recorded as being at 44 years.

Her mother reports that her daughter’s diagnosis process was “slow” and “frustrating” and states that:

“We eventually found a practitioner who knew about autism but it took decades to find someone.”  In the meantime this mother reports being filled with:  “FRUSTRATION and crying out for real help.”

This expressed sense of frustration is echoed time and time again by mothers with daughters on the spectrum and further indicates that there may well be several issues of gender at play within the realms of diagnosis.

Comments from mother’s within this survey indicate that not only does the gender of the child/young adult being assessed for  an Autism Spectrum Disorder play a major role in the levels of diagnosis occurring but also the gender of the parent engaging within that diagnostic process.

This is further highlighted by the fact that although mothers of children within this study reported having an initial understanding that their children (both male and female) had different ways of responding to the world, often their attempts to understand those differences resulted in negative and personally harmful parental experiences with doctors.

Several mothers described having their concerns “invalidated” through having their parenting and psychological capacities questioned.

These are the words used by mother’s themselves to describe their experiences with the diagnostic process;

“I was actively invalidated in my concerns”.

No one would listen and called me neurotic”.

“No help at any stage – considerable negativity + Put downs (of me)”.

Mother of daughter with Asperger’s not diagnosed until late teens.

“As a mother, I still carry all the emotional scars of the assault on my parenting.”

“Pediatrician refused to diagnose her as he felt she was not on the spectrum.”  

“I knew she had something all along but I couldn’t get a doctor to help.”

Mother of a daughter with Asperger’s not diagnosed until 12.

“Professionals did not have training to recognise ASD in intelligent person”.

Mother of daughter with Asperger’s Disorder.

 “Diagnosis from 7 years old was ADD inattentive, anxiety, transient tic, depression.”

Mother of daughter with Asperger’s not diagnosed until the age of 18.

“Took from age 2 to 11 years to receive diagnosis.”  

“No one was prepared to help from when K was young (neurotic mother) “.

“5 years of medical mis-advise misdiagnosis, misunderstanding, full of angst.”

“Many incorrect diagnosis/parental blame/lack of support”.

“We had idea about ASD, diagnosed with ADD at 4 years.”

Mother of young adult not diagnosed until 22 yrs.

“Long process, complicated (by system/practitioners)”.

However, only one father within this study reported having any such experiences.

Mothers therefore describe having to engage with a lack of understanding and support that often began with their initial attempts to have their child’s needs recognised through a medical diagnosis.

Such parental experiences indicate that the tendency of medical professionals to ignore or misplace parental concerns, particularly the concerns of mothers, as reported by Phillip and Duckworth (1980) and explored in the works of Green (2005) and Ryan and Runswick-Cole (2007) are still occurring.

As Green (2005) and Ryan and Runswick-Cole (2007) argue, the medical mis-recognition of maternal concerns emphasises their precarious and powerless position which arises as a consequence of the unequal balance of power that is created through the elevation of medical opinion above the legitimate recognition of parental expertise.

Parents indicate that as a consequence of not having their concerns legitimately recognized or understood, their children’s needs were also negated. This is further reflected within the trends found within data derived from females on the autism spectrum.

Significance of female data

The significance of a lack of diagnosis occurring for girls with Asperger’s Disorder before the age of 7  and with the majority of diagnosis taking place between the ages of 14 -20 years for females, signals the possibility that medical professional may still yet remain either unwilling or unable to sufficiently detect the signs of Asperger’s Disorders / Asperger’s Syndrome in girls.

Maternal experiences of misdiagnosis, invalidation and their overall lack of recognition within the diagnostic process within this study suggests the need for medical practitioners to incorporate greater acceptance of parental insights. Regardless of gender.

As such the statistical findings relating to the lack of diagnosis for girls with Asperger’s Disorder prior to the age of 7 and the predominance of diagnosis between the ages of 14 – 20 years, supports the assertions voiced  by both many adult women with AS (Simone, Lawson,) and parents within this survey, that there is a strong need for those within the medical profession to redress their gender bias  within all areas of diagnosis in order to increase their diagnostic capabilities so that they can more accurately diagnose and assess the needs of females on the Autism Spectrum as a matter of urgency.

 

The Asperger’s Parenting Obstacle Course…… Why Hair Extensions Are Never A Good Idea.

How Could You Do This To Me, Mum?

 

Some days being a parent is like being expected to run 5 different obstacle courses simultaneously.

It’s always one step forward, three steps back.

 

And no matter what parenting move we might try and make in the present to please our children, it all too often ends up becoming the root cause of a wrong parenting move in the usually not too distant future.

 

A future that always appears to be, for some odd reason, so much further down the track than it really is.

 

Hidden out of sight where you  can’t see it and so have no hope what so ever of  making any  necessary corrections in the present in order to avoid making, what will eventually become, a wrong move in the future.

 

 

For instance……..

 

Hair Extensions by Bridget Christian (109)

 

After months and months of pleading, I eventually bought my daughter some inexpensive (AKA cheap) clip on hair extensions off e-bay.

 

She was delighted when they arrived in the mail and for a few short hours, well at least in her eyes; I could do no parenting wrong.

 

That was until I asked her if they came with any instructions as to how to put them in.

 

Which of course, being inexpensive, (okay, okay, cheap), they hadn’t come with any information of the ‘how to’ variety.

 

That was entirely my bad.

 

So instead of panicking, we found a “how to put in your clip on hair extensions’ demo on YouTube”.

 

We watched it together and suddenly I was back to being a wonderful parent again.

 

That was until I tried to actually clip the hair extensions into my daughter’s hair.

 

At which point she screamed loudly and them promptly expressed her opinion that I was either blind, stupid, hadn’t paid attention to the demo closely enough, or was deliberately trying to hurt her.

 

This of course placed me back in the worst, most stingiest parent in the world ever, camp.

 

Now this is the parental camp in which I usually spend weeks, months even, existing in.

If any of you have teenagers of your own I’m sure that you will be entirely familiar the place.

Apparently I only further increased my state of residence in this camp by pointing out to my daughter that if she’d tried sitting still and waiting patiently like the model in the demo had instead of wriggling about on her chair, things might now be going a bit smoother in the hair extension department than they currently were.

 

She of course, was very resistant my logical response and let me know about it in no uncertain but very colorful terms.

 

English: cup of coffee

 

At this point I figured ‘what the hey’, seeing I was already in the bad parenting camp, I may as well make myself a cup of coffee, settle in and stay a while longer.

 

So I picked up all of the hair extensions that I’d so carefully laid out on the table in order of their size and appropriate application position and walked away.

 

Dodging her resentful gaze as I went.

 

Right about that time she finally realized that if she wanted her new shiny and supposedly life altering hair extensions in, that she’d have to start playing nice.

 

And right on cue, from out of her mouth a whole string of apologies and flattery flew toward me:

 

“Please mum, I didn’t mean it mum,”

 

“I’ll sit still this time mum,”

 

“I’m sorry I promise mum,”

 

“You’re the best mum in the world for trying.”

 

Yes a child’s flattery will get a mother (almost) every single time. So, after letting her know that unless she held true to her word about sitting still the whole deal would be off, I slowly laid the extensions back out on the table and we began again.

 

And wouldn’t you know it? This time it worked.

 

Her hair looked amazing and she loved it.

 

Instant hugs.

Status as best ever Mum in the world had been briefly regained and peace in our house had been fully restored while she spent hours (and I do mean hours) admiring herself in the mirror and sending photos of her “new amazing hair” to all of her friends.

 

But, and you know that there’s always going to be a but coming somewhere.

 

But…..

 

Then it came time to take the hair extensions out.

 

This news apparently came as a rude shock to her.

 

She didn’t want to take them out.

 

She loved them.

 

She wanted to wear them to school the next day so that all of her friends could see them “for real”.

 

I didn’t care.

Those bad boys were coming out.

Whether she liked it or not.

 

Once again out came the charges of “bad parenting” as her outrage at being “made to do something she didn’t want to do” bubbled and brewed while she sat unwilling on our kitchen chair as I gently and methodically unclipped her extensions one by one and laid them neatly back on the table.

 

After I’d finished she glared up at me and said “fine, but I’ll be waking you up at 5 in the morning to put them all back in again.”

 

To which I emphatically replied, “No you will not. You are not wearing those to school. They are for special occasions. Not for school.”

 

“But mum, you don’t understand. You’re ruining my life! I promised everyone that I would wear them to school to show them. Now everyone’s going to think I’m a liar and they are going to hate me if I don’t wear them.”

 

Silence on my part.

 

“I hate you.

You’re a bad parent.

You don’t care about me.

All you care about is yourself”.

 

More silence on my part.

 

“Okay then, I’ll wake you up at 5-30 instead”.

 

At this point I reminded myself to breathe.

 

“All right, all right, 6 AM then but that’s my final offer” she shouts as she storms out of the kitchen and stomps up the stairs to her bedroom.

 

Following her statement up with the obligatory teenage door slam which works as an exclamation mark for any and all parental arguments.

 

Ah….. Conversation over. At last.  I’m going to bed. Good night.

 

At 6am the next morning she walks into my room with a cup of coffee ready to hand over to me.

 

Me, all bleary eyed  and slightly confused as to why she’s up without my having to drag her out of bed, but admittedly very impressed with the whole coffee angle that she’s got going on, till I suddenly remember,

‘Oh no, those bloody hair extensions again’.

 

So there she is hovering menacingly over my bed, with her hands on hips when the sounds of my son beginning to stir down stairs land in my ears.

And I understand right then and there that I’m just simply not up for the same level of fight that she is.

 

I also know that if I’m to have any hope at all of avoiding said immanent fight, I need to get going on her hair extensions immediately so that I can  have them all in place before my son (who needs help showering) requires my assistance.

 

More infuriatingly, she knows it too because any change in my sons routine can create untold degrees of catastrophe that have a strong tendency to rumble on throughout the entirety of his day.

 

So call me crazy, call me weak, call me on the fact that I’m setting a bad example for parents all over the world, but right then and there I didn’t care whether I was making the right parenting move or the wrong one, whether I was stepping forwards or stumbling back on myself.

 

I just wanted to get the whole hair extension nightmare that I’d unwittingly created for myself over and done with.

 

And amazingly the hair extensions went in quickly, with no problems at all and once again they looked fantastic and best of all I still hadn’t managed to throw my son’s daily routine out of whack.

 

Yay me.

 

Not!

 

Apparently, within the space of my daughters school day, a day which I might add I had nothing what so ever to do with, her friends had gone from telling her she looked gorgeous, to being chronically jealous.

 

Her glory day had turned into a stormy day and yes you guessed it, it was all my fault!

 

Once again I had “ruined my daughter’s life”.

 

Like I said, some days, parenting is like being expected to run 5 different obstacle courses all at the same time.

 

One step forward, three steps back.

 

And no matter what parenting move we might make to try and please our children in the present, it all too often ends up becoming the root cause of a wrong parenting move in the future.

 

Which is why I now say that the future should come complete with rear view mirrors at all times.

 

Autism Does Not Equal Sterility. Combating the cruelty and ignorance of the words of others.

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My son was returned home to me, pale and extremely subdued, after his weekend visit at his dads on Sunday afternoon.

 

I could tell instantly that something was very wrong, but when I asked him about it he just said that he wanted to go to his room.

 

So he after he’d been in his room for a while I went in to check on him.

 

iamsam3He was crying and watching the movieI Am Sam” on his computer.

 

The movie “I Am Sam” has always made my son cry.

 

Yet he continuously watches it because just like Sam, he too dreams of becoming a father one day.

 

His desire to become a father and experience the joys of raising a child has always been on the top of my son’s wish list for as long as any of us can remember.

 

Even as a child, he’d continuously express his desire to hold and care for babies.

 

His little hands would always be awkwardly reaching out toward the nearest person smaller than himself.

 

Anyone who truly knows my son also can’t help but know this one very important fact about him.

 

Because of this, I am the first to admit that my son’s relationship to the movie “I Am Sam” is a complicated one.

 

He loves to watch it because although it upsets him, it also fills him with the hope that fatherhood for him need not be an impossible dream but instead can become a reachable reality.

 

He relates to this movie on such a deep level because it is the only movie of its kind that portrays an adult, especially a man with an intellectual disability, as being capable of genuinely caring for others, of having a sexual relationship with another special needs adult, and most importantly, of becoming a loving and devoted father despite his own personal circumstances.

 

i am sam1

 

My son is clearly smart enough to know, that the story line contained within the movie, is not beyond the realm of possibility.

 

For this reason, he fears that one day, when he does become a father, there may be someone out there who will try to legally remove his baby from his care, as was done to Sam, by claiming that his status as an adult with special needs makes him an unfit parent.

 

Usually my son will watch the movie, cry and then come and seek reassurance from me that I will never, ever let anyone take away his baby when he has one.

 

This time however, he wouldn’t come out of his room and talk to me.

 

Despite my best efforts he chose to remain within the solitude of in his room all night.

 

This morning when he woke up, he looked even paler and refused to eat his breakfast.

 

Yet he insisted on going to College, as he’s just met a girl that he really likes and he said that he wanted to be near her.

 

Okay. So we get ready and we’re driving in the car when he suddenly breaks down again.

 

Only this time he’s not just silently crying the way he was in his bedroom the night before.

 

This time he’s physically dissolving into great heaving sobs of sadness as he sits in his seat right beside me.

 

I pull over and take him in my arms and ask him again what’s wrong.

 

It is only then that the awful truth finally comes tumbling, haltingly, out of his mouth and the cruel gravity of what’s been said to him whilst at his father’s house, hits me like a red-hot arrow straight to the heart.

 

408967_10150524201273318_535028317_9097053_1821249456_nOn Sunday, whilst they were alone, his father’s new wife took it upon herself to tell my son that he’d “never ever be able to have children of his own because he has Autism and his genetics are all wrong.”

 

He said she then told him to “stop talking about it because she was tired of hearing it and it’s never going to happen anyway so just get over it.”

 

Her words must have felt like bullets to him.

 

Delivered as they were in such an incredibly cold and cruel (and if I were a lesser person I’d also say a deliberately well calculated) way.

 

The impact they had had on him had quite literally cut into the very core of his being.

 

I kept my own sense of rage in check as I tried to calmly reassure him that ‘her’ words weren’t true.

 

Then I remembered that I had a letter from my son’s geneticist still in my bag from the week before. I grabbed it out and read the last line of it out to him……

 

“As we discussed in our previous visit, I look forward to seeing James again when he decides it’s time  for him to have children as there is no reason why his desire to become a father should not be realized.”

 

Fortunately for us, we had seen the Geneticist in November of last year and James had asked him whether or not he would be able to have children.

 

Though initially taken aback by the question, coming as it was from a 16-year-old with Autism and a chromosome deletion to boot, the geneticist answered my son by telling him that there was no reason why, with due care, he could not have children.

 

He also told him that the best way forward with having children would probably be to look at some form of IVF so that they can check any future embryo’s to see if they are carrying any chromosome deletions before implanting them.

 

The whole issue of IVF took quite a bit of explaining later at home, but I still remember the smile that almost split my son’s face  in two once the penny had dropped and the realization that he could truly become a father without causing any genetic harm to his baby finally hit home to him.

 

I tell you, never have I felt so pleased to have doggedly persisted in chasing down the necessary genetic screening tests for my son and never have I felt so relieved to have fallen down on my self-appointed task of judiciously filing away all of James important documents, as I did today.

 

My son sobbed some more as we sat there in our rain splattered car, then slowly, he lifted his head and warily glanced in the general direction of my face.

 

“You promise me I can have children?” he asked me.

 

‘Yes I promise’ I told him. ‘Look here it is in writing. In good old black and white. And you remember don’t you how happy you were when the geneticist said that you could have children?’

 

He nods and blows his nose. His tears slowly stop falling.

 

“So what she said isn’t true?” He asks one more time.

 

“No it’s not true. This,” I say waving the letter in my hand toward him, “this is true.”

 

“But she’s a nurse. She said she knows about this kind of thing”.

 

‘I don’t care what she is. She’s is wrong.”

 

Finally, as a parent, I had the ability to not only answer my son’s questions but to also defend his truths and validate the personal worth and integrity of his dreams against the erosion of harm and doubt that other people’s words of ignorance had caused him.

 

To prove it I hand him the letter.

 

He looks at it as if he’s reading it but I know there’s no way his vision is clear enough to read such small writing.

 

Never the less, he smiles.

 

Folds it up and asks if he can take it to College with him.

 

Normally I’d say no. Not till I’ve made a copy of it.

 

But today……?

 

Today I say….. Yes.

 

YES!

 

Because if nothing else, he needs a yes after enduring God knows how ever many hours of the cruelty of ignorance he’s forced to endure at his father’s house.

 

And as we all know, ignorance is the curse that those with Autism are far too often forced to deal with every day in our society.

 

The curse that follows you home and invades not just your outer space but your inner space as well. Silently shedding its doubts on all of your personal thoughts, your hopes and your dreams, long after the echoes of the words once spoken have disappeared.

 

External Hearts

As parents of special needs children,

We  have to learn to stand back,

To let our lovely ones,

Learn to begin to climb their own walls.

Yet this is so much easier said,

Than it ever will be done.

For having a child with Autism,

Is like living a life,

With your heart,

Constantly beating,

Outside of the safety,

Of your chest.

We are always so emotionally exposed.

No matter how strong we think we are,

Just a few unkind words,

Uttered toward or about our child,

Can pierce us in all of our softest places,

In ways,

That others may never,

Understand.

Perhaps this is why every barb,

Whether intentional or otherwise,

Leaves it’s mark.

So please understand that it’s hard for us,

All of this stepping back,

And letting go,

For our children are not just,

 A part of us,

They are,

Our very,

Hearts.

 

Parents of the Past

One thing that strikes me as being  so very wrong within the disability community is the overwhelming lack of recognition and respect afforded  to the parents of the past.

Over the past 4 decades inclusion has been achieved primarily through  the efforts of multitudes of parents, who have turned their hearts and  their minds, to the task of creating social and educational equity both for and on behalf of their children.

These brave parents of the past battled against levels of discrimination and prejudice that thankfully we can now only imagine.

They were the first to call for the recognition of their children’s basic human rights.

They were the first to confront the lack of knowledge, awareness and acceptance of their children within mainstream society.

They were the first to throw their shoulders against the walls of segregated education.

They were the first to rally around and raise awareness of the need for greater educational support, teacher aides  and social skills learning programs in schools.

The parents of the past were the ones who knocked down the very first walls.

They are the ones who  have  constructed the gateway to the  social and educational inclusion that so  many of us now gratefully walk our children through.

Over the last 4 decades they have been joined by successive waves of parents equally as committed to  taking on the challenge  of creating open hearts and minds.

Yet these parents of the past, to whom we owe so much, are rarely acknowledged or even mentioned within either the disability community or  society as a whole.

It’s time we paid homage to those who have gone before us.

Our generation did not begin the process of inclusion.

We were not there at the start of the fight.

We need to acknowledge that our current successes in gaining support and understanding for our children simply, would never have happened, without the courage, persistence and strength of the parents of the past.

So if you know an older parent of an adult with a disability, please do not disregard them as if they are irrelevant because they may be no longer in the fight…..

Instead, take the time to thank them for their contribution to the laying of the  path, you are now fortunate enough to be walking on.