The Journey, A Poem by Mary Oliver

The Journey

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice --
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.

~ Mary Oliver ~

(Dream Work)

Dear Asperger's: Welcome, We've Been Waiting For You...

Sparrow,

I read your post about your lad and the trials and tribulations of needing to get a haircut and I sighed in recognition of the emotions that you must go through over, what seems to us, the insignificant  details of life. To our children, though, and to children on the Autism Spectrum in general, these things aren’t simple; getting a haircut, going out into society in general with its plethora of sounds, sights, colours, and smells, can be a sensory overload that can throw a child into a literal panic. I wonder what people, who don’t know about Autism, or Autism Spectrum, think when they read our postings about our kids. Do they think we’ve gone off of the deep end or can they actually commiserate?

Your most recent posting, "Haircut"(http://birdieandsparrow.blogspot.ca/2013/01/haircut.html), received a beautiful comment from a reader empathizing with you on this issue and encouraging you forward and I was deeply moved by it and the fact that this person could be so feeling, but it made me wonder how many others really understand what it is like to have children like ours. If they don’t, they must read postings like yours, or the one I wrote about Chronic  Sorrow(http://birdieandsparrow.blogspot.ca/2013/01/uncontrollable-weeping-and-chronic.html), and think we are over dramatic. Heck, they must wonder why we even feel the need to blog, altogether. For anyone that is interested, here is a link with information pertaining to Asperger’s Syndrome and Autism Spectrum Disorder:  http://kidshealth.org/parent/medical/brain/asperger.html

On our end, we always knew that our youngest was “different” somehow. Her drummer tapped out a beat unlike most and we recognized, from a very early age, that the world, through her eyes, was unlike anything we could experience. We started the process of diagnosing her when she was only 6 and, while many a possible label was thrown our way, it wasn’t until yesterday, January 22 2013, that the official label came through: Asperger’s Syndrome.

There it is - High Functioning Asperger’s Syndrome(the high functioning aspect refers to her higher than average intelligence level). We are no longer “potentially” on the Autism Spectrum with a “potential” disorder. My daughter has Asperger’s Syndrome.  If you imagine a line drawn horizontally across a page, much like a historical timeline, we have a definitive spot now marked with a great big red dot. It’s further down the line from Classic Autism but it shares many of the same traits and quirks and it is that big red dot which allows my daughter to see herself, and her needs, in a concrete, “this is me” kinda way. And, for those that don’t believe in “labelling” a child, let me say this:  try to walk through the world knowing that the world, as others experience it, is so vastly, grossly, monumentally, different than the way you experience it that you think there must be something wrong with you, and then tell me that a label doesn’t matter.  A simple label truly does have the power to not only explain your behaviours, but also to help you understand and forgive yourself for them, and to appreciate them. The label is just a word, sure, I get that, but it allows a child to say:  “That’s Why!”.  It allows parents to say: “Now I get it!”.  It gives, to a degree, a guideline of how to proceed and a chance to start again, with understanding.  Never underestimate the need to “understand” and to be understood. My child couldn’t be happier to finally know, “This is who I am, this is why, and this places me in a group of people that I understand and who will understand me”.

Asperger’s Syndrome, I welcome you to my world as a label, but you don’t phase me because you have, technically, been in my life for almost 13 years via my Kidlet. You have challenged us but this family has met you head on. You have introduced us to beauty, and to heartache, you have dragged me kicking and screaming into a world of Chronic Sorrow but also into one of stunning happiness. I welcome you as an official label and we, as a family, will banish the preconceived prejudices that such a label brings with it and we will continue to love our Kidlet, respect her, and marvel in her as we always have. I just wish, Asperger’s Syndrome, I just wish that you didn’t make my little lady THAT intelligent cause she rolls her eyes at me, way, way, way, too many times a day!!!!! Actually, I take that back, BRING IT ON!

Love Always,
Mother of an "Aspie Girl"
Red Bird

Haircut

Dearest Red Bird

When will I learn? Today has been a day of handling things all wrong, but really I'm lost and wouldn't know how to handle it right anyway. It was a typical day all in all, where autism put itself front and center and neither I nor the boy knew what the heck was going on. Haircuts. Today and the last three to four weeks have been dominated by the impossible task of getting a haircut. Google Asperger's and haircuts and you will be greeted by a host of blogs and articles on the difficulties of having your haircut when dealing with autism and in partnership sensory processing difficulties. I've read all the articles and know all the issues, from smell to sound, to balance to touch to social awkwardness and anxiety. What I don't know however is why it's so hard for MY boy. Without that knowledge, I don't know which problem to tackle or how to tackle it. As you know, I have a child who finds it almost impossible to express a feeling, who, when faced with a question, recoils as in pain and can only manage a mumbled 'I don't know'. A question for him or rather the expectation of an answer, is equivalent to us being bombarded by questions from a group of people all up in our faces shouting at once. It's confusing and stressful. So here I am, unable to find a solution to make having his hair cut easier.

We have been prepping him for weeks, he doesn't do well with unplanned events. We go over the importance of having his hair cut. Both the Hubster and I went for haircuts in a show of solidarity and setting a positive example. We were straight talking no nonsense parents today, not making a big deal about going and then we begged, threatened, bribed and finally gave up. What else do you do when your child is curled up on the floor having a panic attack? You would think we would have figured this out by now, this has been a problem for a long time, but I am no nearer to figuring out how to overcome his difficulty. The worst part is that there is in actual fact an easy solution.I cut his hair at home. No social anxiety, reduced sensory overload, and time. So now I have guilt to add to the list of emotions, why am I being so 'evil' as he would put it, when doing it myself would be so easy. Well, because you know as well as I do that at the forefront of our minds is the future, preparing them for independent living.

I'm exhausted Red Bird and I'll confess to weeping this evening. Why does it always have to be this hard? A month of ground work for one hair cut, watching your child panic and shake in fear, begging you not to make him go. We have made so many positive strides forward lately, but it only takes something as simple as this to remind me with no uncertainty, that we are on the spectrum and will always be on the spectrum. I'm also reminded that for me this is an inconvenience, a frustration and a feeling of sorrow for his distress, but for him it is a daily struggle even on the good days. Perhaps I should just cut his hair at home, why add to his stress. Of course being a good parent means being cruel to be kind. It is something I will never get used to. We will deal with it however, he will get a hair cut eventually and we will draw a line under all the bad and put it away until next time, that's all I can do. It doesn't get easier for him, each haircut is a new experience it doesn't matter that he survived the last one, we reset the clock and start back at the beginning; prepping, begging (from both sides) and finally overcoming.

What is it they say about being a parent, you have to pick your battles? What do you do when your battles are about basic life skills? Essential life skills? The everyday things that others pick up naturally? What's that? You pick up an extra bottle of wine that week. Excellent advice my friend!

Always Yours
Sparrow

Sorrow and being a Roundy in a world full of Squarys

My dear Red Bird.

In some ways I am relieved. To have a name for this feeling, I know, has in itself offered you some kind of relief too. It is the saddest thing I have ever heard of however, chronic sorrow, like a shadow that on the sunniest days is at it's strongest showing you life isn't 'normal' and on the darkest days it gets to sit back and watch, after all they are your dark days and the darkness is taking care of business. I followed your link and read all the info and it struck me that the biggest suggested cause for chronic sorrow was the realization that your child wasn't 'normal', that they don't fit in with all the other children who by all accounts are 'normal' and that perhaps this is some failing on the part of the parent. So here we are again back at the 'normal' thing. Of course my dear friend, we both know there is no such thing as normal. There is the majority, but I would argue that we have become confused between majority rule, and majority right. Just because the majority agree doesn't make the minorities views any less valid.
When I was little I had a book by Roger Hargreaves called 'I'm a Roundy. You're a Squary'. It had the most profound impact on my life. I've mentioned before in this blog that I was always very different from my family and for the longest time I always thought that there was something wrong with me. Reading this funny little book opened my eyes to the fact that I was just different and different doesn't mean wrong. It took walking away from 'normal' for me to see just how abnormal 'normal' is. I grieve over the years wasted in the school system. Not because I am anti-school, but because it isn't good enough, never will be, never has been, not for my boy and his weird and wonderful brain!  So why did we settle? When we talked over Christmas you mentioned how things were a bit easier this year with Fledgeling because you had kept it low key; she got to stay in her jammies all day.  This really struck me. Why do we try and act a certain way (dress up for Christmas for example) when it may cause negativity, I mean we all do it, always terrified of anarchy I suppose.
We walked away from normal, we let our 'different' child show us the way and he taught us how he needs the world to spin to thrive. We released him of all standard obligations, school, activities, social relationships and watched and listened. We have seen him relax (he rarely chews gum anymore, although his bedding is often holey!) gain confidence in his strengths and socially excel. We went for Dim Sum with our friend and neighbour, a Chinatown native who treated us to the full Dim Sum experience in one of the oldest restaurants in the oldest Chinatown in Canada. The Boy joined in the conversation, asked questions and actually seemed relaxed. This was not possible when we lived life 'normally'. The world expected him to fit a certain mould and it all but crushed him.
My point, I think, is to embrace what you can in your quirky life with Fledgling. Don't feel the need to make yourselves fit into the world, make your world fit around you. If you need a day to run around the forest screaming together, run around the forest and scream. If you need a day to connect and have fun because she's happy and you're happy, play hookie from school and do what you need to do. It's hard sometimes to remember that there are many ways to reach your destination, we are programmed to believe that we must all travel the same road. This feeling of loss and sorrow, guilt and hesitation, I will argue comes from this pressure we put on ourselves to be 'normal'. We try to 'fix' them, not because we want them to change but because we desperately want to take away their pain and hardship, but we can't dear Birdie, and we know that really. The difficult days just are and we have to plow through them more regularly than we want but I challenge you to face each of them with a bag of silver linings by your side and always be on the look out for a moment to hook one on. Writing down all the positives, all the accomplishments, all the times you laugh  and reminding yourself of those moments often, while drawing a line under the bad. They have happened and are over, you are done with them. This reminds me of something that happened today, oh and many times before. While struggling with a writing assignment, all I heard from the Boy was 'I can't write well, I'm bad at writing' and I thought how many times have you heard that in your life, how many times has a teacher or a friend told you that you aren't good enough at A, B or C. How many times do we file a complaint, or badmouth a business or whine at the tardiness of a delivery compared to telling someone they did a great job. A human quality to focus on the negative, a shame we've forgotten how to distinguish between when it helps and when it hinders.
As for the guilt, well, let's be honest, our children are a full time job. If they are not directly needing our attention, we are planning and researching the next step, always trying to be one step ahead of the 'game'. I am rarely on my own, the Boy is always by my side, I mean come on, really, he's almost 15, when is this going to end? That doesn't mean I don't love him, I refuse to feel guilty for needing him to just let go every now and then. I think that's perfectly healthy. I suspect there are times when he wishes I would just back off too as I'm sure Fledgling does with you. So no, no guilt Red Bird, these feeling are healthy and must be addressed or we are useless.
As for regret, well I could tell you there are many things I regret, but what use does that do me? I do not own a time machine, I only have control over the present, I can't change what's past. So the only thing we can do is make every moment count. I suck at this by the way, big time, procrastination being my middle name, but it is a philosophy I'm trying hard to live by. When you feel fatigued and sorrowful, angry or at a loss, acknowledge it and deal with it. As you know from your Farm Boy incident, you can't keep emotion under lock and key. It will find a way out and when it does it will burst out right in the middle of a grocery store, just to teach you a lesson!
I hope dear heart that knowing what it is you feel and why you performed such a wonderful one woman show of 'Madness at the Grocery Store', you have found a little peace. I know my extremely long winded over simplistic ramble above is more theory than practicality, but we can only try and muddle together our own rule books to help guide us through our very individual lives, perhaps we should call it 'The Ever Flexible Unrule Book for living with the Most Extraordinary Children'. Doing the best you can is ALWAYS good enough, don't ever think otherwise.

Always Yours
Sparrow

Uncontrollable Weeping and Chronic Sorrow

Sparrow:

I’m going to begin this post by relating a funny, though not funny, event that happened recently in my life, and by extension yours, in order to share something that I think will benefit you, and many of our readers:

Just before Christmas, as I reported to you in emails and to our readers via this blog, I ended a relationship with someone that I had come to feel strongly for. I felt sad and confused by the breakup and, in order to alleviate the pain, I threw myself into Christmas prep with fervor. The day after the breakup, I bundled myself up and, with intent to “wipe it out of my head”, I went to Farm Boy, a local fruit and produce store, to stock up on food for an impending visit from my Father for the holidays. I stepped up to the butcher counter and placed an order for 2lbs of ground pork to make a traditional Tourtiere for Christmas Eve. To the horror of everyone around me, right there and then, I started to cry.  I wasn’t openly sobbing, but I was crying, and trying hard to wipe the tears away. The more I wiped, the more the tears came and they kept coming: unbidden, uncontrolled, unwelcome. 

Suddenly, the idea of me crying in front of the butcher made me laugh. I realized the ridiculousness of it all and I couldn’t hold back the laughter, much as I couldn’t hold back the tears! I got control of myself, paid for my groceries without any further incidence and “hightailed” it to the car where I called you in a state of emotional panic. I cried long and hard the moment I heard your voice and you were so gentle and caring, cooing in your beautiful British accent and letting me just spill it all out, though I claimed I didn’t want to talk about it. God, we laughed hard at the people passing by staring at me as I openly wept in the car!

We both realized, in that conversation, that while I was sad over Ikea Man, this wasn’t the problem. The sad that I felt, (as my eldest daughter pointed out, not unkindly), was disproportionate to the length of time I had cared for this person. I quickly understood that my sadness wasn't completely attached to the breakup. Don’t get me wrong, I’d hate for Mr. Ikea to read this (if he reads the blog) and think I wasn’t affected by the end of the relationship; I was.  My sorrow just seemed incommensurate with the event.

What I didn’t realize, at the time, was that this sense of sadness has a name: Chronic Sorrow. It’s different than depression, it’s different than grief but, yet, similar in many ways.  Here’s where I need you, Sparrow, and our readers, to be patient while I, yet again, diverge with another story in order to explain “Chronic Sorrow”:

As you know from our conversations, I had yet another assessment for Fledgling with her psychiatrist yesterday. I dropped her off with my mother and I met “the ex” at the doctor’s office ready to take part in a questionnaire aimed at diagnosing “high functioning” children with Autism Spectrum Disorder. While we have often been told that Fledgling’s symptoms appear to place her on the Autism Spectrum, we’ve had trouble pinning a label to her because of the multitude of issues going on.

During the testing, questions were directed at each of us about our experiences with our youngest daughter, and a rating was then attributed to our answers. The questions, however, had a deep and profound impact on me. With each question about my experiences with my child, memories of pain, fatigue, and difficulty came rushing back at me, memories formed over 12 years of living with a child with “higher than average needs”, and these memories hit me like a tonne of bricks. The questions brought back difficult days of navigating around my little monkey to keep her happy, healthy, and on track. I came face-to-face with the denial of my own needs and the needs of my family, with the loss of what is conceived of as “norm” when you have a child, and with a guilt for what I perceived as a loss of my oldest daughter’s childhood as it bent to make room for a sibling whose needs came first. A certain innocence of everyday life evades you when you have a child with any illness and I didn’t realize just how affected by it I was.

There was a point in the questionnaire where painful emotions came back so strongly that I started to weep, much like I did in Farm Boy. Again, it was an uncontrollable, unbidden, weeping that, no matter how hard I tried, wouldn’t end. The psychiatrist stopped the conversation to talk to me and she let me know that mine was a common reaction, though she was deeply moved by it, and she told me there is a name for what has been happening to me after years of “high alert”: Chronic Sorrow.

Chronic Sorrow

I immediately understood what she was talking about when she said this.

Chronic Sorrow

Walk through it with me Sparrow, and anyone else living under a constant “high alert”:  You love someone and you do anything and everything to make their world better because they deserve it. You dedicate all your time, all your energy, all your emotional health to them and, without your permission, comes fatigue, a sense of loss, and regret. You stop talking to people about the issues because they either no longer want to hear it or because your life is so different from theirs with your “high needs child” that you can no longer connect to friends with “normal” children. You feel guilt because of your sense of loss, you feel sorrow or, even, shame. Sadly, you learn to hate yourself for all of these emotions. How can you possibly feel these emotions when you love your child and the condition is not their fault?

Chronic Sorrow

Sparrow, we talked on Skype the other night and, without knowing the word, we were talking about “Chronic Sorrow”, remember? We brought up issues of loss, guilt, fatigue, and sadness. We’re afraid to say it out loud to too many people, aren’t we, in case they, or our families, interpret it as “my child is a burden”. They aren’t “burdens” in a traditional sense, but they are draining, of no fault of their own, and neither of us would trade that. EVER.  A child on the Autism Spectrum is a “difficult to parent” child on a multitude of levels but the extraordinary value they bring to everyday life is STUNNING.   

Absolutely STUNNING.

But…it has caused “Chronic Sorrow”.  http://www.chronicsorrow.org/

I hesitated to write this piece in case either of our children should read it and hear “you broke me, bad you”. This is NOT my intention. I am very open with Fledgling and I hope she hears from me everyday, in all my actions, that I LOVE HER and not DESPITE her issues. In many ways, her issues have taught me about love. Rather, I wrote it because I feel obliged to pass on the information so that others out there, with children like ours, can start forgiving themselves and taking care of themselves.

I’m going to spend a few days thinking about the concept of “Chronic Sorrow”.  I’m going to meet with the psychiatrist in the future in order to work through my own issues and, hopefully, finally forgive myself for being, as I thought, “a terrible excuse for a mother”. I’m going to embrace the idea that I’m not alone in this feeling. If there is a label for what I’m going through, then I'm not alone - there must be entire populations of mothers and fathers feeling exactly as I do.

I love you, Sparrow,

A “willing to learn to forgive herself with time”, Birdie