Sometimes, when you’re busy being a special needs mum, you need a gentle reminder……

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Sometimes, when you’re busy being a mum, you forget how keenly your words and actions impact on the lives of  your children.

Last night my lovely daughter reminded me of this in the nicest possible way.

You see, over the course of the last week , we’ve both come down with a truly horrible flu.

My daughter came down with it first and after two days of coughing and feeling utterly blue she woke me up in the middle of the night to tell me that her head felt like it was exploding on the inside.

Without thinking twice I jumped up out of bed to check her temperature and then gave her some juice and some paracetamol.

Once those few things were done I invited her to snuggle up with me in bed and promised her that I’d watch over her all night.

Not long after she’d settled into my bed she rolled over and said;

“Oh mother…. I do believe I may well be in my final hours”.

As dramatic as her words sounded, instead of denying her the right to speak her feelings by rushing in and trying to tell her that she was wrong, I once again reassured her that I would be watching over her all night long and then asked her if she’d like me to get her an icy pole to soothe her dry, sore throat.

She agreed to the icy pole immediately and not long after eating it, fell into a deep, sound sleep.

By the time the morning arrived I too had begun to come down with the same dreaded flu.

So we both went off to visit our local doctor who found that my lovely girl had developed an ear infection on top of the flu, which is why she’d felt like her head  was “exploding on the inside”.

As for me, well I’d already been in the throes of fighting  off a sinus infection, as well as catching the flu, so antibiotics and lots of rest were prescribed for both of us.

Later that night I developed a massive migraine as a side effect of the antibiotics.

In response to my migraine misery, not only did my daughter make a point of coming in and checking on me all through the night, but each and every time she came into my room she would ask me:

“What can I do to make you feel  better mum? Can I get you a glass of water? Would you like an icy pole? Do you want me to hold your hand?”

Each time she did this I thanked her for being so kind and thoughtful and each time she would say “It’s okay mum, I know how bad it feels when you’re head’s exploding on the inside.”

The next day, after the migraine had washed away, I once again experienced those same feelings of both extreme love and gratitude for the way my daughter had chosen to love and support me throughout my own night of “final hours”.

When I tried once again to thank her for being so wonderful, she looked at me in confusion and said;

“Mum, why do you keep thanking me? I was only doing  to you what you did for me when I felt like my head was exploding?”

Her words really made me stop and think, not only about the importance of the way I had responded to her when she had been feeling so ill, but the importance of the ways that I respond to her on a daily basis and how all of the small kindnesses that I shower her with are now coming out in her personality, despite the fact that many believe that children like my daughter are incapable of showing  empathy towards others.

You see, my lovely daughter has High Functioning Autism or Asperger’s Syndrome and many mistakenly  think that children and adults with HFA/AS aren’t able to either experience or express empathy for the suffering of others.

Well, I’m here to tell you that my daughter and many like her, can and do experience empathy towards others.

Especially when they grow up being surrounded by both the benefits and the acknowledgement of having empathy shown towards the unique ways in which they experience every aspect of their lives.

So even though sometimes, when you’re busy being a special needs  mum  and you forget just how keenly you’re words and actions impact on the lives of your children, you may just discover that your children will find their own unique ways to remind you of just how important your words and actions are to them.

And hopefully you too will experience this reminder in the nicest of all possible ways.

 

A Different Life – By Donna Woods

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Before you were born
 I imagined how it would be
 And what I'd say to you
 And what you would say to me
I pictured what we would do
 And I planned what life would hold
 But all of that had to change
 The day that I was told
A different life awaited us
 From the one that I had thought
 And a lesson in Autism
 Was going to be taught
Things would be difficult
 And times could be tough
 I would sometimes wonder
 Why my love is just not enough
But then I'd come to realise
 That the journey that we're on
 Is just a different route
 And it sometimes may feel long
I'd have to think of other ways
 To meet the dreams I'd planned
 Autism had placed me
 In a new and mysterious land
We could still have fun
 And we could still learn
 Even if some days
 I didn't know which way to turn
Although life was different
 I'd make sure it was complete
 I wouldn't give up on life
 And I wouldn't admit defeat
There would still be a world out there
 For us to seek and explore
 And for you I would do anything
 My special child who I adore
Before you were born
 I planned our life together
 And I'll be there to hold your hand
 Today, tomorrow and forever

© Donna Woods 2013

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A Childless Mother, Is still A Mother. Though her arms may be empty… her heart never will.

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Mothers Day has always been an incredibly difficult day for me.

Filled as it is with  mixed emotions but not for the reasons you might think.

It’s not a difficult day for me because I have a son with Autism or a daughter on the spectrum.

In many ways their presence here helps to counteract the whirlpool of emotions that this day normally stirs up in me.

Mother’s day is hard for me because I am, or at least I would have been, had everything gone to plan, the mother of seven children.

You see, four of my lovely ones never made it kicking and screaming into the light of this world.

So every Mothers Day I sit and I think about the babies that I never go to hold.

The faces I was never allowed to touch and love.

And I wonder what they would have looked like now as strapping young adults.

I wonder what their personalities would have been like and who they might now have been.

Would they have been artists or writers?

Would they have had that same broad grin that my middle son wears like a badge of honor?

Or those same amazing amber eyes as their sister?

Would they have been as tall as my living eldest son or more on the shorter side of life like me?

I guess it’s normal for mother’s like me to wonder and occasionally let ourselves dwell in the mystical land of ‘what could have been’.

I guess some would even say that I’m still grieving their loss and I yes, in a lot of ways I probably am and always will be.

I know that it has gotten easier with time.

Yet I will always remember that the awfulness,  of breathing my way through  every single Mother’s Day that left me unmarked and unacknowledged as a mother, during those years of enduring loss, were some of the most pain filled days I have ever known.

During those days I often used to wonder what to call myself.

After all what do you call a childless mother?

Common sense would say that there can be no such being as a childless mother and yet, there I was, every single Mothers Day for four years, struck numb by being exactly that  which logic dictated I should not be.

A childless mother.

Despite that I  knew, that even though I was a childless mother, I was still a mother.

Though my arms may have been empty, my heart was always full.

So to all the childless Mothers everywhere, I honor you, I recognize you and I declare with all my heart that;

You are now,

And you will always be,

Mothers,

Worth celebrating.

 

 

 

 

 

 

Crappy Parenting is a Spectrum Disorder

Originally posted on Laughing Through Tears:

Dear Random Internet Strangers:

Please stop telling me that I don’t love my children. It’s sort of judgmental, considering how you’ve never met me. And while you’re at it, please stop telling me that I’m a bad parent. That’s just a given.

April’s been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we’re ruining our kids. I’ve personally been told that I hate my children if I hate autism because I am unleashing my own anger and frustration down on their unwitting little heads, and I’ve also been told that I hate my children if I don’t hate autism because it means I’ve totally given up on them. Apparently I am simultaneously doing too much and not enough therapy to help them (because it is both a complete waste and utterly necessary)…

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So why all the animals ?????? This post is in honor of my middle son…… I really do see you my lovely young one.

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I rarely write about my middle child.

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My youngest son who  so willingly engages,67935_541838245867555_1087220439_n Within in his own silent and peaceful universe.

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The universe he’s created to escape the lack of attention he receives  from me when ever I’m busy dealing with either the needs of my eldest son or the melt downs of my youngest daughter.

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I know sometimes he thinks that I forget to see to him.

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That I forget to listen to, or hear him.

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Or that I forget to think of him and his needs amidst the daily jungle of our lives.

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I’d like to say that he’s perspectives are neither accurate nor true,

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But,

11744_548751435176236_736055841_nIf I’m honest,

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I know that sometimes he’s right.

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So in order to show him that I do see him,

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That I do listen to him and think about him,

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His interests and his needs,

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I’ll often search the internet for amazing wildlife photos of the animals  I know he loves and adores.

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He is a child of nature.

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And he loves all creatures big and small.

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This is his way of coping.

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And I love taking the time to  see, appreciate and understand the sense of wonder that still exists within his precious soul.

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So this post is for you my lovely young lion.521850_543994382318608_1741177800_n

And this is your mother’s way of saying she’s watching over and loving  you just as much too <3

 

An Update on Daughters, Dishes, Cats, Banshee’s and Reality Blogging

English: What a smiley looks like when thinkin...

Sadly, for all concerned, the cats did not grow opposable thumbs and solve our dish washing dilemma for us.
Instead, something even more amazing happened.
My daughter did the  washing up…….
Yes, she finally caved…..
Seems she hates the taste of “plasticky” (yes I know it’s still not a word)  prepackaged salads even more than I do.
Mind you  her efforts were accompanied by a constant tirade of complaints.
Her favorite and most often screamed statement during her time of need was of course….
“I hate you for making me do this”……..
Many such statements were soon followed by a rather disdainfully yet surprised quip……
“Porridge?”
“Really guys, porridge?”
“That’s disgusting…..”
“Yuck”……….”
 
Well yes I did have to agree with her on that one….
Sadly the remnants of porridge, when left in a bowl for 4 days, does  have a rather strong propensity for setting like concrete and  becoming even  more difficult  to remove…… and…. yes of  course lest I forget….. also for  becoming  “disgusting”……
Not long after making her declaration of disgust, she abandoned the dish cloth completely…..
Flinging it half way across the room and  began  working solely on the dishes with a long-handled dish scrubber thingy that had lain unused in the back of the cupboard for years……
Which trust me, at that point in time, I became extremely grateful for the knack I’d developed over the years  for buying seemingly ‘useless’ kitchen thing-u-ma- jigs.
Not so useless anymore  now are you long-handled dish scrubber thingy?
At one point during her whole ordeal I swear she even began shrieking like a Banshee………
 
And I had to resist the temptation to step in and take over the task for her……..
But I held firm.
Heck, I’d waited four days for this.
This was nothing short of  some sort of  teenage Aspie miracle unfurling before my eyes.
So who was I to step in and get in the way of all things  mystical and magical?
No, not I.
Even if it did mean putting up with a bit of ear-splitting Banshee wailing.
No one ever said that miracles have to be quiet.
So now the dishes are done.
The cats took the news surprisingly well and at first appeared to be completely indifferent to the changes taking place about them.
Although they did make a bee line for the nearest exit as soon as she began the whole shrieking like a Banshee business and I haven’t seen them since.
But they will be back.
I have cans of cat food just waiting to be opened for them.
My daughter on the other hand, is still recovering……
On the couch…. TV remote in hand…. Glazed expression in her eyes.
So as a thank you to her and to show her how much I appreciate her efforts, I went out and brought her several new tubes of paint for her art work.
To which she glared at me when I presented them to her and said…..
“You don’t seriously expect me to do art work now do you? My hands are too tired from all of the dishes you made me do. Which by the way is still child labor. I’m going to report you.  I hate you.”

Johann Heinrich Stürmer Köchin

Oh my darling girl, how I love ,that everything is so different about you.
Is it wrong , do you think, to admit that, despite all of the drama, there is a part of me that actually feels good about this ?

 

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.

 

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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.