Wednesday, September 21, 2016

Special Moms for Special Needs?

I forgot my cape today!
And I left my super powers in bed, tucked under my pillow.
I stepped out of bed and I forgot that I should have put on all my super power gear because I needed to be super Mom.
Oh wait; that's just a dream.  It's just me.  A woman who is trying the best she can to navigate through waters she has not been.  
Only I'm on a raft, with no paddle, no compass, and no life jacket.  So I will sit here and enjoy the ride.
My Mom always told me that I wouldn't understand why she did what she did until I had my own children, and boy was she right.
The whole, "...just wait till you have your own"...although I still believe deserved my eye rolling, was so true!! I just didn't know it.

I realize something now that I did not realize in the first 6 years of my son's life.
That for special needs, you don't get special Moms.
You simply get women who fight, love and do not give up...EVER.
I prefer to think of myself as his number one fan, his biggest advocate, his teacher and his rock.  I have no hidden super powers, talents, or gifts.  In fact, I think I'm pretty regular. I'd actually say I'm on a border line of "unspecial" if I was perfectly honest.

I teeter on a fence most days of what to do, what to say, how to say it, and how to live it.
For most people when they see my son, they think many things;
"He's not that bad if he is on the spectrum."  "He's fine". 
And in a perfect world, if he knows what to expect, and the day has the same order, same routine and same shirt, he's ok.
Throw in a class trip, his favourite shirt in the wash, or a day he's been regulating himself so hard to be "normal", this raft I'm on starts to sway and dip and rock in the torrents of waves, and winds that I do not know how to control.
And today I felt I almost slipped off my raft into these waters.  I was folding laundry, and what did I see but this;
To most, what you see is folded laundry.  Piles for kids, and yet, there was my sons on the end.  ONE shirt, and ONE pair of pants.  I realized then, that I must have let him wear the same shirt for almost an entire week!!!  How did I miss that?!  How did I miss that he had but one shirt he wore.  This is typical for him, but usually I try to convince him to change it after 2 wears.  How did I fail as a Special Needs Mom?!!! Should I not be better than this?!

But I am "just" a Mom.  And it's no different I suppose then trying to figure out my other 5 kids.
I'm left trying to figure out not only how to maintain a house with a 16 year old who has teenage problems, and life; and a 3 year old who wants to dress herself; even though those hot pink shorts and light pink shirt are so not the way to go;
but I'm also trying to manage all the in between stages of life, school, home, bookkeeping and a special needs son.

My husband got a letter of recommendation the other day for doing a job so well on renovating a kitchen.
Sentences such as "...his team was absolutely amazing", "...very professional and reliable", "...timely manner", "...are the best in the area", "...beautiful...high end quality.", and " ...Thank you".
Yes, for sure, if you need a house built or a renovation, he is quite something.  He is a "Jack of all trades...and he can do it".  Insert business card here :)
I was happy and pleased for him, honestly I was.
But when I went to my mailbox today, sadly, there was no letter for me.

There was no one telling me that I am doing a great job, or that I am the best Mom in the area.  I do not receive reassurance that I am amazing, or reliable, and there is seldom, if ever a thank you.
My life (and hair) is often messy, deadlines are not always met, quality is sometimes missed, and some days I'd rather let them watch tv than hearing them argue.
But I do love, and I do it FIERCLY.  I do it when I say "No", or when I take away a privilege. I do it when I call the paediatrician weekly, and I'm sure they'd rather not pick up, or when I read more articles than I understand.  I love them when I cook, clean and wash, and when I drive them for their sports and school.  
When I give them chores, or not allow them to do something they so desperately want to do, I am loving them.  They just can't always see it.

But I believe my biggest challenge as a Mom today is trying to teach my children that what is good for the goose is not always good for the gander.  Trying to show them that what I didn't do for them and I do for my son is not spoiling.  I have raised them all so similar, and now I have to raise one different, because he is so.

And it's hard.  Being a Mom is HARD.
So to all you Moms out there;
consider this your letter of recommendation.

Dear Mom;
I am writing this letter to you in reference in regards to all you Moms.
I have the pleasure of being among you, the elite group that call yourself Mom.
You are amazing.  You are holding your profession well and are reliable in fulfilling your task.
Your quality of work is second to none.  You clean and work and do what you do always in a timely manner; the time deemed and set by your employees.
The people you are working with are the best in the area, because they are yours.  
From the 16 year old who thinks you are too hard on them, and the 3 year old who wants to do everything on their own, to the special needs boy who has made life special; they all have individual tasks in your job, which will allow you to push yourself to limits you never thought you'd be able to achieve.
You are the "Jack of all trades", and no matter what needs to be done, you can do it.
You are hard working and I am pleased at how beautiful your heart is, your strength, and your courage.
Thank you Moms for being who you are!

And so, I wish I could go and grab my cape now, while I fly off to do the various things I am called to do.
I sometimes think it would be nice as a Mom to have x-ray vision, super powers, super speed, or super strength, but I don't.
I'm just me, on this raft, floating along the ocean of life, and this raft is not even my own.
I'm clinging on to a rope of faith behind it, because I have precious cargo that is on it.
I do not know where this raft is going, or how I will get there most days.  But all I can hope is that when I hit shore, I have survived. 

I may be beaten, broken, and changed, but I will land knowing that the journey was hard, but that I made it.
And when I take in the sight of the beautiful vacant white sanded beach that I finally land upon...and I think I am alone, and that I have finally finished my travels, I will not be surprised when I hear someone yell, "Mmmmmom".

Because that is what I am, and always will be. But I hope that I will know that the job of Mom and the journey of being Mom, has made me who I am.
And although the journey is tough and surprising, I can only cling to the hope that my children will see that the journey of life is absolutely worth it, and hopefully it prepares them for a journey of their own.

Thursday, September 8, 2016

The Spectrum; ASD - the truth

If you had talked to me a year ago, words such as "The Spectrum" or "ASD" would have meant very little to me.
Those letters, "ASD", however insignificant or little they may seem, have the power to turn your world upside down while at the same time turn it back the right side up.

I used to think I was crazy.  No, honestly, I did.  I always knew my son was "different".  
But to be honest, after having 2 colicky boys before him, I welcomed the silence.
I had 4 children when my son entered my life; so life was busy.  The fact that he never wanted to look at me, or touch me while I nursed him; the fact that he would fall asleep without cuddles, or rocking; the fact that he showed no desire to be picked up when I would near him were actually welcomed things to me in my already crazy world.  He was a "good baby", but as he neared his first bday, the easy going nature started to grow into a boy who craved isolation.

He was a little "slower", in crawling, walking, and speech; but he was #5 in a family of 5 children.  I figured his easy going nature, and older siblings left him not needing to advance the way my other children had.
With the growth of my little man came the challenges; slowly at first - he did not want to play with other children, or even his siblings; he was quite content to be on his own.  And when he wanted to play, he would just steal a toy and run away.

The challenges became my own; it would annoy me when my son would cringe and cower away from his own grandparents and aunts, when they tried to hug or kiss him.  I felt I was always apologizing for him.  Apologizing he didn't want kisses, apologizing he was stealing toys, apologizing he was rude and disobedient in the store, apologizing when on my last trip I ever took with him to the grocery store, I had to pick him up and place him crying while in the fetal position in the buggy with groceries stacked around him.

When he was 4, my dear friend broached the subject of "Aspergers" with me over coffee.  I had never heard of it, and so turned to our good old faithful friend "Google" after she left.  I'm not going to lie; I cried.  This was my son, and yet, there were differences in what I was reading.
Kindergarten had a new set of challenges.  A boy who only wanted to sit and watch others play, unless he could play with his cousin. A child who would forgo recess to sit and do work one on one with his teacher (bless her heart, because I'm sure she would have rather enjoyed a coffee on her own,lol).
And so after some testing, and talking, we were off to see a paediatrician.

I remember that day clearly a year ago.  The day that I was told that my son was on the Spectrum.  It turned my world upside down, with questions of what now?  Where do I go from here? How do I approach, deal, tell and live with this news?  And yet, it turned my world up right.  I had a new found relief of finally accepting that he was different for a reason, and realizing I had no need to apologize anymore for who he was.

He's still just my boy,
and as he grows, he and I are learning; and we face new challenges.
I have to figure out ways to convince him he is not dying when he scrapes his knee.  The blood curdling screams are sure to make anyone believe he is on his last leg. Or figuring out how to curb his anger.  How do I make him go from 0-60 in 2 mins as opposed to 2.2 seconds.
I have to find ways for him to tolerate loud noises and busy places.  
But the real battles lie among the every day things; 
teaching him to say "hi" to people when they greet him.  Teaching him that he can not mimic people or mock them when they ask questions he does not understand.  Teaching him to say simple things such as, "I did not hear you", or "I do not understand what you're saying".
Trying to help him see that the world is not such a scary place.

And it's exhausting.  I have fought systems, people, and services.  I have spent more time talking, researching and teaching.  I have spent hours on the phone, and computer.
I have realized that some days, I do not have the patience, the know-how, or the ability to do this.  But I have love, and trust, and faith in God, who placed this boy in my life, that I can.

I have come to realize that most people do not understand what it's like to have a child on the Spectrum.  They see a healthy, normal boy, and don't realize the inner struggles behind closed doors.  But I'm ok with that.  I'm ok that some people may never realize or know the truth.
The truth is, that it's a different world.  But it's beautiful.  It's beautiful because he has taught me more about myself then I have ever taught him.  It has given me an opportunity to teach my other children, and it has made me realize that of all things; I am to be humble.  Humble in how I look at, judge, and treat others.

And that's really the truth of it all; and for that, I am thankful. 
I am so blessed to be able to learn from my little boy.

So take a look around you today, and ask yourself;
"Who's going to be able to teach me?"
And will you let them?
Try being teachable; you may find it's a beautiful thing,
and you may be surprised at what you learn about yourself!

"God found some of the strongest women in the world, and unleashed them to be Autism Moms"