Parenting the Exceptional Needs Child.

I think every parent has heard or said at some point in their life "Parenting is HARD work".  But, then what is parenting of an exceptional needs child?  Dang near impossible!!!!  Most days I feel like i've been thrown into the middle of a sea with no compass and i'm just able to tread water enough to keep my head above water.

I often feel I am not cut out for this - Why did God choose me as her mother?  I know she needs me, and I love her very much, but I feel so guilty, because some days there's not enough patience in the world to keep me from getting frustrated with her. 

What does she have?  She has Fetal Alcohol Spectrum Disorder.  Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the range of disabilities and diagnoses that result from drinking alcohol during pregnancy.  Her exact diagnosis is still undetermined, but we're working with professionals to find out what they are.

Children with fetal alcohol spectrum disorders (FASD) have a high risk of psychiatric problems, particularly attention deficit hyperactivity disorder (ADHD), conduct disorder, or both.  They have problems with impassivity and due to the lack of ability to control impulses they often find themselves in sticky or dangerous situations. 

It's hard to remind myself constantly that she has a form of organic brain damage and that conventional parenting techniques will NOT work with her.  It's hard to remind myself that because of this form of brain damage she will not learn from her mistakes, and forgets the rules, even though I have told her them a thousand times, including 2 minutes ago.  It's so hard to have patience!

I hate all the stares we get when we're in public because she causes scenes - but I more dislike feeling like we can't go anywhere for fear of misbehavior.  I feel like all of our friends, family and previously enjoyed activities have fallen by the wayside because our lives revolve around her and what she can and cannot handle.  The stress is intense and has an effect on everyone involved.

I feel so hopeless much of the time because I know she wont outgrow this.  I know the statistics and they're scary:
90% have mental health issues, 81% need assisted living, 79% can’t keep a job, 70% are victims of violence, 60% get in trouble with the law over sexual issues, 60% have disrupted school experiences, and 60% are either dead or incarcerated by the age of 30.  

It's hard to be optimistic about life when you feel like it may never get any easier.  It's easy to start feeling sorry for yourself and say it's just too hard.  I guess I just need lots of understanding, prayers and friends who understand and want to be by me and my children anyways.  

Parenting is the hardest JOB!

Do you know what really grinds my gears?  People who assume that stay-at-home moms don't work! 

Yesterday, I got a call from a survey company based out of Toronto, and it's not that I wanted to do the survey - I hate those things, but I really resented how the surveyor asked if I worked, and I told him "yes, I am a stay at home mother" and he replied "oh, I meant work for actual pay". 

So because Stay-at-home moms don't get paid in cash our jobs and opinions are somehow less valid!?!?

Where is the logic in that?  No, I may not work neat little 9-5 day 5 days a week with a wage, benefits and paid vacations, but I work REALLY hard.

At a 9-5 job if the bathroom isn't tidy, you tell your supervisor and they get someone from maintenance on it.  If that happens at home, Mom's gotta take care of it....and if it just so happens that your child decides to put their favorite toy in the toilette (because she needs a bath) guess whose hand is going in to retrieve it........YUP!!!!

So, I know this has been a bit of a rant, but I just hate that society places so little worth on the most important and hardest job you could ever have.  I think it's time to put more value back into the family and fix our priorities.

Long time no Post

Wow!  Has it really been over a month since my last post?!? 
<Hides face in shame>

I don't really know where to start.  I don't want this blog to be all "sunshine and butterflies", but at the same time, I don't want it to be a B***h Fest either.  Hard to find a balance and often writing helps what you're feeling inside flow out of you and onto the page.  I tend to bottle up negative emotions, so often those are the ones that flow most freely once I sit down and allow the words to come forward.

I will write more a bit later (I promise!). 

My baby's Turning 2!

Time is the most undefinable yet paradoxical of things; 

the past is gone, the future is not come,

and the present becomes the past even while we attempt to define it,

and, like the flash of lightning, at once exists and expires.  ~Charles Caleb Colton

Seems like just yesterday we got a phone call stating that a baby girl had been born and desperately needed a family.  I still remember the first time I held her.  I started crying as I gazed down at her (and i'm tearing up now just recalling); she was beautiful.  Dressed in a simple sleeper with a purple crochet sweater, bonnet and booties.  The roundest little baby face, with her chubby little cheeks, button nose and rosebud lips. and the most hair i'd ever seen on an infant.  And those eyes, oh those eyes.....I've heard people refer to them in a Spanish term "Ojos de becerro" which means "Calves Eyes" and I would say that's a pretty accurate way of describing them.

The best way to describe Leah's personality is saying it's like the weather.  Unpredictable and ever changing, and just when you think you've got it figured out, it throws you for a loop.

Weather is a great metaphor for life - sometimes it's good, sometimes it's bad, and there's nothing much you can do about it but carry an umbrella.  ~Terri Guillemets

Needless to say, she's a real challenge - but life without he would be so dull. and "normal".  She keeps me on my toes.  

She's turning 2 on Monday, and I still can't believe how fast it has gone.  I know time never changes pace, but it seems as though it races at times, and I just wish I was able to hit the "pause" button every now and then.  I think that's one of the things that is a big draw to me about photography.  It allows me to "pause" life with the push of a button and creates a lasting impression of a moment in time that we will never forget.

Happy almost birthday baby girl.  Mommy loves you more than you know.

My little slice of Heaven

Heaven Sky Unger - 35 Months Old

 Wow, I really can't believe that my baby is about to turn 3!  Seems like only yesterday she was a 5lb 8oz little bundle of joy - now she's my nearly 30 pound, fun loving girly girl who is completely convinced she is a princess.

Where did the time go?

Sometimes I feel like I can't wait for her to grow up and be more independent, and then, in the very next breath, i'm longing for those days of complete dependence.  I'll tell you one thing for certain though - I do NOT miss the sleepless nights.

 

I love the little lady she is becoming.  She has more personality in her tiny body than most adults do in their large ones.  She is caring and thoughtful and has great manners, or so we've been told.  She also has a terrifying temper, but we wont get into that right now.

She has taught me so much about myself, and so much about life.  I love looking at things through her eyes, because it's when we see things through the eyes of a child that we truly learn to appreciate the simple things in life. Like how kids are more thrilled with wrapping paper and boxes than the toy we scoped out for weeks, saved for and then endured crowded stores, rude cashiers and bad traffic for.

I honestly believe my girls were meant to be in my life - God hand picked them for me and I couldn't be more grateful.  Yes, some days are hard, but we're always loving, living and learning.

I didn't give you the gift of life,
But in my heart I know.
The love I feel is deep and real,
As if it had been so.

For us to have each other
Is like a dream come true!
No, I didn't give you
The gift of life,
Life gave me the gift of you.
--- Unknown

  

The Nerve of Some People...

"Never say something behind one's back that you wouldn't have the nerve to say directly to their face" ~ Author Unknown

 I am having one of those days where I feel like the world's worst mom.  And, maybe I am a bad mom, but I don't like hearing it from other people.  Like many other moms, i'm stuck indoors 99% of the winter because it's just too cold and too difficult to get out of the house with two little ones in tow.  So instead, I look to other sources for advice and reassurance.  One such place is "Yahoo! Answers".  

Today I posted a question about my bedtime battles with my daughter.  I have tried literally everything I can think of to get her to bed, and it just doesn't work, and i'm out of ideas.  Some of the answers I got back were so hurtful.  I know I shouldn't let strangers get to me...but it's hard when you get answers like:

"shes the one making the rules, its supposed to be the other way around."

I honestly don't feel like she's the one making the rules.  I feel like I have too many rules sometimes.  We have a loving bed time routine that we follow fairly religiously.  We have a snack, then put our pajamas on, then brush our teeth, go to the girls rooms, tuck them in, read/tell a story, say prayers, hugs and kisses, tell them "goodnight and we love them".  If that isn't how it's supposed to be, then I don't know what i'm doing wrong.  If she comes out of her room, we just bring her back and lay her down again.  But this is happening for hours at a time and at all hours of the night as we've recently started getting 3 and 4am visits in our rooms.

A response to my question that was particularly hurtful was:

"Sh!t man, why not just put her to bed properly? Like, actual parenting. You know how in "Goodnight Moon," there's the "Quiet old lady, whispering hush"? Yeah, that...

Set up a routine with milk and stories and cuddles, tuck her in, let her drift off -- _then_ go drink your beer or whatever it was you were doing while closing the door on a sobbing three-year-old (traumatic, very scary for a small child). You must realise that the hijinx with using gates instead of parenting is not normal?"

I was baffled when I read this.  Why is it that when a mom is struggling and seeks help, even from strangers, others feel the need to be cruel?  Parenting is hard enough without complete strangers assuming your a negligent alcoholic.  It's comments like this that make moms feel like they can't talk about the difficulties surrounding parening and makes everyone plaster fake smiles on their faces and pretend everything is perfect.  Hah!  What a sharade!  I want to talk about the hardships and gain real advice from women who aren't afraid to be real.  I don't want to pretend i'm perfect and like my almost 3 year old didn't just hack her own hair today or color all over the walls.  Is that too much to ask or are we just supposed to play our parts in the "picture perfect" life?

 

The Bedtime Battleground

I used to consider myself so lucky to have two little girls who went to bed so easily, and slept through the night with no issues.  Well, not anymore.  Those days are long gone.  They have given way to what I like to call "The Bedtime Battleground".  At least Leah is STILL in her crib so we don't have to worry too much about that one.

Heaven is SUPPOSED to go to bed at 8:30.  She used to do this (even in her big girl bed) with no problems.  Then the light became an issue as she decided one day out of the blue that she was scared of the dark.  So we gave her a nightlight.  Then she decided that the nightlight wasn't enough and wanted her dimmer switch on as well.  Then it progressed to the light having to be ALL the way on.  Then she refused to let us close her door (something that had never been a problem) but she night wanders so we had to put up the baby gate - now she can climb over the baby gate and goes into extreme hysterics if we close her door....so I don't know what to do anymore. 

I'm just ready to throw my hands up and say "fine go to bed when and where you want".  But obviously I can't do that.  I am tired and cranky, and so is she x100.  What to do when you feel like you've tried everything?