Sunday, April 22, 2012

I am the child...


(Author Unknown)

I am the child who cannot talk.

You often pity me, I see it in your eyes.

You wonder how much I am aware of -- I see that as well.

I am aware of much, whether you are happy or sad or fearful,

patient or impatient, full of love and desire,

or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater,

for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions,

responses over my well-being, sharing my needs,

or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in

development that you can credit yourself;

I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities.

Opportunities to discover the depth of your character, not mine;

the depth of your love, your commitment, your patience, your abilities;

the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own, working harder,

seeking answers to your many questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world seems to pass me by.

You see the longing in my eyes to get out of this chair, to run and play like other children.

There is much you take for granted.

I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.

I am dependent on you in these ways.

My gift to you is to make you more aware of your great fortune,

your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them.

I feel not so much envy as desire, desire to stand upright,

to put one foot in front of the other, to be independent.

I give you awareness.

I am the child who cannot walk.

I am the child who is mentally impaired.

I don't learn easily, if you judge me by the world's measuring stick,

what I do know is infinite joy in simple things.

I am not burdened as you are with the strife's and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy things as a child,

to teach you how much your arms around me mean, to give you love.

I give you the gift of simplicity.

I am the child who is mentally impaired.

I am the disabled child.

I am your teacher. If you allow me,

I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the disabled child.

Wednesday, April 18, 2012

What a wonderful surprise!

We recently found out that I am pregnant! Harris baby number 3, aka Sweetums:) It's not what "we" planned as far as timing but it is wonderful and exciting blessing!

I don't really want to announce by due date but we are due right before Thanksgiving. We have a lot to do before then. I have to rearrange some things so we can have room for a new baby. We can't wait to start shopping for some things that baby needs. I am also excited to share our journey along the way...

A few of things I've already decided:

1. Of course I'm going to cloth diaper again. I already have some diapers for 10+ lbs but because they are OS (onesize) they tend to be a bit bulky. Now the search is on for itty butty fluff that will take us from newborn to about 15lbs! I will be looking at prefolds and even some that fold down for the umbilical cord. I love the little things, like itty bitty fluff...hehehe!

2. I AM, I AM, I AM going to breastfeed. I will need LOTS of support on this. I have failed with the first two and I so badly want to triumph in this area. I tried with baby #1 and he lost weight and the doctors told me that I had to bottle feed:(, and then baby #2 was hardly ever with me after I had her (the nurses would whisk her away and forget to bring her back) and I believe that they fed her bottles even though they knew that I was trying to breast feed.I did try to pump but my milk dried up and the doctor told me that was normal. SO with this one I will have to be firm about my decision and I plan on going to classes.

3. I already have a boy and a girl so we will let this baby be a SURPRISE!!! We have decided not to find out until the day of arrival:) I think this will be hard some days but I also think that the day when my son gets to walk out and announce to a room of family and friends, "IT'S A ______!" It will be a huge honor for him and he will be thrilled!

4. I know that most people that know me will think that this one is crazy because I'm not good when it comes to pain, but I am thinking about a natural childbirth as well. I may not have the help that I need after baby #3 decides to come and I have heard that you feel better and move better after a natural childbirth. I am thinking about mind on this could change and I will accept that but at the moment I am doing my research:)

I ask that you pray for us a smooth and wonderful pregnancy! Thank you so very much!

Tuesday, April 17, 2012

Welcome to Holland....

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

****Copied and pasted here***

Monday, April 2, 2012

An Autism Story, my son's story....

I get asked all the time, "How did you know?". This question always sends me back in time. A wave of emotions come over me and I seem to relive it in the 30 seconds that it takes me to respond. I don't think that I ever want to forget, so I am going to write out his/our story here.

My son (Little Buddy - affectionately named) was born in June. He was perfect! He had ten little toes and ten little fingers. He had a head full of hair (so long that I cut it when got home from the hospital). I thought this was it! I fell in love with him the first time I held him. We brought him home and he began to progress just like any other child. He just didn't sleep very well at night, he did struggle with this a lot. He smiled at me, laughed, rolled over, sat up and even said "Moma". Then out of the blue everything changed.

He began to do little things that most people would think "That is too cool!". I remember he used to lay his blocks out like this: blue, yellow, red, blue yellow and red. If I moved them he would have a fit!!! My Mr. and I were in the living room and I had given our Little Buddy a bowl of cherios. He laid them in a straight line around the table, then proceeded to do this: the first of the set of 3 he ate, the second one went in the bowl, and then he went around again and ate the third one. We just starred at each other in amazement.

He stopped saying: Moma, Dada, hot, bye, hi, bear, and all of the other words he knew. He stopped paying attention to us. He didn't care if I was in the room or not. He started banging his head and screaming! He wouldn't point to what he wanted. He would seek out the sharpest corners in the house and begin to bang his head on them. He would do this if he was happy or angry. He would repeat "sounds" (because he lost all his words) over and over and over again. He refused to eat anything and just wanted a bottle...did not want the cup!

We took him to a GI doctor because at the age of one he only weighed 17lbs. The doctor's were a little worried. They tested him for everything under the sun and still did not have any answers. I was looking on the internet and came across the phrase "head banging". I thought to myself this is funny, mine does this ALL the time. I began to read the doctor's respone and then I immediately got off the computer.

I couldn't believe what I had just read, "Autism". The word kept ringing in my ears. What? Could it really be? No way! Not my little one. Isn't Autism where they sit in a corner, drool, and rock themselves? I was confused and this just couldn't be, no not in a million years. How did this happen? I decided to research this more because I had to prove to myself that he was NOT Autistic.

The more that I read the more I cried. I didn't want to acknowledge or admit it out loud. How was I going to tell my husband? How was I going to tell my family? I knew that everything they were mentioning decribed my Little Buddy.... poor social interation, poor eye contact, didn't make friends, a lack of spontaneous seeking to share emotions, delay (total lack of) speech , inability to initate or sustain a coversation, lack of make believe play, needed routines, flapping his hands, and the list can go on and on some more....

So what do I do now? I contacted the doctor which led me to Babies Can't Wait. They evaluated him and started therapy immediately, he was 15months old. We went to a neurologist who diagnosed him with Autism. I went home and decided at that moment I had to fight. It wasn't a phyical fight but an emotional one. I was going to have to be his voice. I needed to be his voice. I needed him to suceed.

Follow us this month to read more of my son's story...