Lost – Possible Reward

There has been a feeling creeping in on me for a few weeks now. It has been coming closer and closer. Until this morning I didn’t have the exact wording for the feeling.

I feel lost.

Not in a “Where did my GPS lead me this time?” way. (Mine has a sexy Australian voice. I tend to just listen to him talk, not actually pay attention to where he is leading me…but I digress)

In a “Where is Allison?” kind of way.

I have spent so much time over the last 20 years being what I thought everyone else wanted and needed me to be that I have lost sight of what I want to be. Of who I am.

A mom? Well yes, I am a mom. I enjoy being a mother most of the time. But that is part of who I am, not who I am.

A wife? Well yes, I am a wife. I have a wonderful husband who is my partner in almost every sense of the word. But that is part of who I am, not who I am.

A daughter? Well yes, I am a daughter. I have parents, step parents, in-law parents. I am certainly a daughter to many. But that is part of who I am, not who I am.

A sister? Aunt? Cook? Housekeeper? Friend? Blogger? Tweet-a-holic? Teacher? Tired? Lupus patient? Failed gardener? Reader?

I have lost me. If asked to define who I am, I would only have a blank stare to offer as my answer.

If you find me, please leave a comment. Possible reward.

Have a little Faith

I don’t go through our old photos often. Selective memory works best that way. If I am not confronted with evidence to the contrary, I can pretend that it has all been happy and sunshine and bunnies and rainbows.

I even forget.

This is the face of pediatric stroke.

She was 5 months old in the first picture. This is our baby. Our beautiful baby.

She is the survivor of a right hemisphere stroke.

When I see that first picture, my heart aches. My eyes well up. My throat begins to close. I don’t like looking at her baby pictures. It simply hurts.

I prefer the second picture. This is her now. And she is awesome.

All in one place – Animals For Autism & the Pepsi Mess

Todays post is a reference post with a one-stop-shop of newspaper articles, news clips and blogs of the families involved.

NEWSPAPER ARTICLES:

Chicago Tribune

Kitsap Sun

My Northwest

NEWS CLIPS

WICS – Springfield, IL

KING – Seattle, WA

WCPO – Cincinnati, OH

WCTV – Tallahassee, FL  

MY POSTS

http://www.mommyrambles.com/pepsi-pups-posts-animals-for-autism/

BLOGS

Stinker Babies 

Making Waves 

Dogs With a Cause 

Speaking 4 Sam 

Autism Papa

 

That peg doesn’t fit here

Yesterday, while I was at the store, I spotted girly nirvana. It was perfect. How could any girl not love…

PINK LEGOS!

Oh! I wanted! I wanted! Uh, for Faith, of course. Faith.

As I stood looking at the different packages and dolls and LEGOS, I realized….Faith would hate these.

Almost since birth we have known Faith was different. We have accepted it. Faith is….well…she’s Faith.

We have tried to always accept what is Faith. She has her own mind. She knows what is right and what is wrong. She is her own amazing little girl. I know that. I love her as she is. She is my daughter.

So, why do I find myself trying to fit a peg where it doesn’t belong?

I buy dolls, and princess dresses, and tea sets. I buy Barbie’s, and hair bows, and pink. Lots of pink.

Faith? She wants nothing to do with it.

She wants Transformers, and Superman, and firemen. She wants trucks and Captain America shirts and ties. Oh, she loves her ties. She wants red, and blue and black.

She wants to watch Bob the Builder, and play LEGO Star Wars. She wants police car light up shoes, and Spiderman socks.

She wants the blue crayon. She wants the red fork. She wants a Mario bed, with red walls and blue dots.

I love my daughter. Her heart is pure, and she knows what she likes.

I didn’t buy the pink LEGO’s.

 

The Egg

Todays post was also originally on my other blog, but I felt it was a humorous balance to yesterdays post. (…and to those who know the UNP, please keep in mind that she does not read my blog and I do need an outlet. So please don’t read this to her….m”kay????) 

Most of you know that Faith has food allergies. She has, at the high point, been allergic to: Peanuts, Egg, Wheat, Dairy, Soy, Corn, Oat, Rice, Sunflower, Tomato, Almond, Walnut, Pecan, Hazelnut and honestly I don’t remember what else. That has been our life for the last 8 years. Food + Faith = severe allergic reaction. She has even had to have a Gastrostomy (G-tube) that we have used to feed her an amino acid based allergen-free medical liquid  food.

Things have taken a good turn for us lately. Many, but not all, children outgrow some of their allergies. A lucky few even outgrow them all. Faith has outgrown some. Enough that we can feed her again! The ones that we have back are wheat, dairy, oat, rice, corn and tomato. Whoo-hoo!

Anyway on to the story…..

There is a person who shall remain nameless, henceforth known as UNP (Un Named Person) who at times has a bit of trouble understanding Faith’s allergies. Okay, she has A LOT of trouble “getting it”.

The last time she was here for a visit I gave her the great news that Faith could now eat wheat and dairy. This conversation that followed:

UNP: So I can bake her my special cake!

Me: Ummm, no. It still has other things that she is allergic to in it

UNP: What is she allergic to that is in it?

Me: Well, eggs to start with.

UNP: But you said she got back dairy and flour?

Me: Yes, she can have dairy and wheat now.

UNP: So I can bake her my cake!

Me: Nope, not yet.

UNP: But you just said she could have dairy and wheat.

Me: Yes, but not eggs.

UNP: But why?

 

(At this point I’m feeling very confused…..)

 

Me: ….because she is allergic to eggs….

UNP: But you keep saying she can eat diary!

Me: Yes, but not eggs….

UNP: Why can’t she have the eggs?

Me: Because she is allergic to them.

 

(AArrrgghhhhh!)

 

UNP: But what is she allergic to?

Me: Eggs!!

UNP: But what is in the eggs that she is allergic to?

Me: The egg???

UNP: What is IN the egg that she can’t have?

Me: The EGG!

UNP: But she got back dairy?

Me: Wheat and dairy, but not eggs!

UNP: But eggs are dairy.

 

(slightly stunned silence…)

 

Me: Ummm, no, they are eggs.

UNP: But they come from a farm, so they are dairy!

Me: No, just because they come from a farm doesn’t make them dairy, they are eggs.

UNP: Oh, so what are in eggs anyway?

Me: Uh, eggs?

UNP: But what is in them that she is allergic to????

Me: (heavy sigh) Baby chickens…..

No rainbows today

(I originally posted this on my other blog, but it fits well here also)

Todays post is going to be a bit different than my usual, so if you are looking for sunshine and rainbows and bunnies…..this isn’t the post for you. Go back and click one of the others, they may bring a smile to your face.

Still here? Well, grab a mocha and sit a spell. Today may ramble a bit.

I try very hard to always see the bright side of life. I usually have to. There is a very fine line in our home of holding it together. On one side of that line is Pollyanna blindness. An unwillingness to see what is really here. On the other side of that line is sadness and despair. A grief of what is not. I think I do a pretty damn good job of keeping my feet moving forward on the path right between the two. I understand that my life is not normal. Nor is it a life that anyone dreams of living. But it is my life and I have to make the best of it.

But you know what? Sometimes it really sucks.

 

There. I said it. I’m pulling on my big girl, fireproof undies, so flame away.

 

Do you have any idea how it feels to have to concentrate on your breathing so intently that you can sense the temperature difference between slowly breathing in the cool air and exhaling the warm air?  I have to. I feel each breath as it draws in, I try to smell any small changes in the wind. Maybe pick out a slight salt smell of the nearby water, or char smell of someones BBQ. I focus so intently that I almost enter a trance. I have to keep myself from losing it as Faith is screaming bloody murder in the car seat behind me. Kicking and throwing and flailing against the straps in her car seat for going on the 20th mile of what I had hoped would be a fun trip. Why? Because the milkshake we got her as a treat had a blue straw instead of a red.

I have not slept a full night in 8 years. Autism and sleep seem to be like oil and water. They just don’t coexist. I long for sleep. At times I start to cry for no other reason than I worry I will not ever get a full nights sleep again. Most parents of young children are fatigued. It is one of the uniting things of us as parents. We ask each other “Is she sleeping well?”. We grumble a bit, talk various strategies, and form a friendship. But you know it’s going to end. Kids start sleeping through the night eventually. Be they 1 or 3, it happens. I’m at the point where I realize now that Faith may never sleep through the night. Ever. And I am tired. If Faith does not sleep, that means I don’t sleep. She can not be left alone to watch TV, she needs supervision.

I am often bruised and sport black eyes. Faith gets violent when she melts down. She doesn’t mean to, and she apologizes afterwards. I truly think she is not in control during those times. So I hold her in an attempt to keep her from hurting herself. I end up getting hurt in the process. This is my life.

I am so sick of changing poopy diapers. It’s not her fault. She has almost no bowel (or bladder) control. I don’t get upset at her and I always try to make changing her as calm and happy of a time as possible. But I’m so tired of it. Cleaning up an almost 8 year old is NOTHING like changing the diapers of a baby. Nothing. And I know now that I may very well be changing her poopy diapers when she is 30, 40, 50.

I’m so tired of being judged. Please stop. Yes, I hear it. I’m not deaf. And it hurts. I have a child with multiple physical and mental disabilities. My life is different than yours. Telling me “When my kid did that, I told him no and put him time out.” is not helpful. Nor is “She just needs a spanking. Some discipline would straighten that right out.” Really? Physical punishment fixes brain damage? Gee, thanks for that info.

What that does is alienate me even further. And I am already living on the very edge of normal society. The things that most people do to cultivate and maintain friendships are hard for me. Coffee with a few true friends is the best I can manage, maybe once a month. And that is not enough. I miss talking to people. I miss the bonding of friends. I am desperately lonely at times. But friendship has to be with the understanding that I often can’t hold up my end of it. I can meet for lunch….if….Faith is not sick, or doesn’t have a doctors appointment, or get a call from the school that I have to go get her. So I have reached a point where I don’t hope for friendships anymore. Those that happen, I treasure. But I don’t have the energy anymore to seek out and cultivate new ones. When I have, I have felt like I have let that person down since I often have to cancel and can rarely talk on the phone. Then I feel guilty.

I miss physical touch. Faith absolutely freaks out if anyone touches me. And only me. I’ve learned that this is common in autism. I’m not sure I understand it, but it is there. So I avoid touching other people. Touch is very healing and I miss it.

I cry. And I grieve. I grieve for the child I had dreamt of when I was pregnant with her. The little girl who would slowly grow up, become a sullen teenager, go to collage, meet a boy, get married, have children of her own.

I cry. And I grieve for our other children. They get the short end of our time and our patience. I have missed so much of their childhoods. So many things we are unable to do that I had hoped to. Even some simple things. Things you may take for granted. I only made it to a couple of my oldest daughters band and color guard performances. Faith couldn’t handle the noise and crowds. I only made it to one of my oldest sons track meets. Vacations are a joke. That’s not going to happen for us. And I feel angry about that. Every time I see happy pictures of happy families at the Happiest Place on Earth, I get an empty hollow feeling inside. I wish with all my heart I could take my children to Disney. But Faith could only handle maybe 90 minutes of a crowded loud place like that at a time. It hurts to know I can’t give my children that.

I cry. And I grieve for myself. My personal ideas of where my life was headed, are shattered. The logical timeline of life is warped for us. We have a child who will need the level of care usually given to a 3 year old, for the rest of my life. The rest of my life. There will be no returning to work, sending the chicks out of the nest, retiring and enjoying grandchildren. And I have to figure out what comes after. I will die someday. We all do. And logic says Faith will live longer than I will. So not only will I take care of her for my lifetime, but I will have to figure out how to care for her afterwards as well.

(Moving my feet back to the fine line again…..thank you for listening)

Hide and Seek – Animals For Autism

The exchange copied below was not sent to the families involved in the Pepsi Mess. It was not placed anywhere in response to THE FAMILIES questions, letters, emails, pleading for answers.
It was only found because the families are still trying to get answers.
I’m not sure how “We have also encouraged the grantee to be in more regular communication with the families going forward, to which she has agreed.” translated into “Take down your Facebook page”, but as of a couple of days ago, that is exactly what Lea/LM/Millie Kaydus did.
The families have asked, repeatedly, for something in writing. Really, is it that hard to do? Not phone calls, no more “he said, she said”, but in writing.
They have asked, repeatedly, for a picture. A simple picture! Some families have been asking for 10 (TEN!) months for a simple picture to share with their special needs children.
They have asked to know WHO is training the dogs promised to the children.
And yet, no one will answer….
Why are you not responding to the questions being asked about the Animals for Autism Pepsi Refresh Grant fiasco? It’s about time for Global Giving and Pepsi to admit that they made a mistake in supporting Lea Kaydus and Animals for Autism and do something to make it right for the CHILDREN!
    • GlobalGiving

      Hi Kelly, we appreciate your concern for the families involved with this grant. We wrote a blog post about our monitoring process here: http://blog.globalgiving.org/2012/01/27/animals-for-autism/
      We are listening and we still have an open offer to any of the families who are still involved with the program to discuss their concerns one-on-one. The blog questions that you’re referring to span across a number of issues/people but we’d be happy to address the ones that we can.
      19 hours ago · 
    • Kelly S***k

      then why haven’t you or Lea Kaydus provided pictures or video of the dogs in training? why haven’t the families been better informed during this process? why did she go “off the grid” multiple times including now – her website and facebook page were taken down? if you supposedly did a site evaluation/inspection we not post pictures of the site – surely you took pictures of the dogs being trained in their new facility. this whole thing smells fishy. can you say COVER UP???!!!!
      18 hours ago · 
    • GlobalGiving

      We can only speak for ourselves. As the grant administrator, GlobalGiving is trying to balance our commitment to transparency with the grantee’s right to privacy. We fully appreciate that the lack of public information is very frustrating for the families. We can say, based on our contact and site visit, that she is in compliance with the terms of her grant agreement and is scheduled to deliver the dogs to the requesting families starting in Spring 2012. As noted in our blog post, we stand firm in our commitment to do everything we can to support the grantee to help bring this project to fruition. We have also encouraged the grantee to be in more regular communication with the families going forward, to which she has agreed.
      16 hours ago · 

Thursday Thinking

This is a weekly series that I hope you will take part in. Basically, I will ask a question, you answer. Easy-peasy. ;) Sometimes the questions will be very simple and easy to answer in one word. Other times they may be more controversial and require a bit of thought on your part.

Ready?

Do you ever use a traditional 35mm camera and film?

 

Sit down and shut up

I have been asked a couple times why I am being so vocal about the Pepsi Pups mess.

“Didn’t you withdraw from this program back in August? What does this have to do with you anymore?”

Back in July (yes, it has been that long) when Jimmy and I first started trying to get straight answers from anyone, we were basically told “Sit down and shut up. It’s a free dog.”

Nothing was adding up. The more we looked, the more confused we became.

“Do you know service dogs usually cost $15,000? You are getting a free dog. Sit down and shut up.”

We looked even more. We talked even more. We realized that this was a bad situation. A scary situation. A situation in which children could be hurt.

No one would listen to us.

Yes, we need a safe, trained service dog. Yes we desperately wanted a free service dog as promised.

Imagine with me:

In an economy of 80% unemployment, you land a job. IT”S A JOB! You have a job! It’s the most amazing thing ever! Finally, you can take a breath, and know that all is well. You have a paycheck coming!

First day on the job, a toaster drops out of no where and lands on your head. 

Damn. What just happened? 

You look around. All your co-workers are standing back up, brushing toast crumbs off themselves and sitting back at their desks. 

You ask the girl next to you “Did you just get hit with a toaster?” She answers, “Yes, but sit down and ignore it. We are just lucky to have a job.”

You keep going to work each day. You keep getting hit with a toaster.

You talk with the upper management. You talk with the owners. You are told “Sit down and shut up. Do you realize how lucky you are to even have a job?”

You get to know your co-workers. They are wonderful people in desperate situations. The NEED this job just as much as you do. They need it to the point that they are willing to ignore that they keep getting hit with toasters. 

You know getting hit with toasters every day is wrong. 

“Sit down and shut up.”

One morning you can’t take getting hit with another toaster. What can you do to draw attention to the fact that this is not how it is at other workplaces? Talking to higher ups hasn’t worked. Your co-workers are scared to lose their job. 

You quit your job. Who in their right mind would quit a job when it is so desperately needed? Someone who was frantically trying to show that something is wrong. Someone who wants to save their co-workers. Someone who wants to draw attention to how wrong it is at this place of employment. Someone who when they tried to draw attention when they worked there was told “Well, it can’t be that bad, you ALL are still working there. So sit down and shut up.”

Jimmy and I withdrew Faith from this program because we felt it would have the greatest impact. Who the hell gives up a free service dog that normally costs $15,000?

Someone who was desparatly trying to make people see that this was messed up.

Do I want a service dog for my daughter? Oh hell yes.

Do I feel like I am still part of the Pepsi Pups families? Oh hell yes.