One Blue Eye ... What?

Last May, we lost our dear Frankie.  She was an Australian Shepherd mix dog that had been a faithful member of our family for 16 years.  (See my post dated May 18 – RIP Frankie.) 

Naturally, Tyler started asking immediately when we would get a new puppy.  The thought of “replacing” Frankie was something I didn’t even want to consider.  But, I knew that the day would come.  I just didn’t know when.

Frankie was special in more ways than one.  But, one of her physical attributes that made her stand out was that she had one blue eye.  So, Pat wisely told Tyler that Mom wouldn’t want another dog unless we could find a female with one blue eye. We knew that would hold him off for a while.

Tyler continued to ask Pat all summer to start looking for a puppy with one blue eye.  A couple of months ago, Tyler started asking me when we were going to start looking for a puppy with one blue eye.  As the frequency of his question increased, I realized that the day was rapidly approaching when I would have to “give in” and say “ok” to getting a new puppy. 

We knew that we wanted to find another Australian Shepherd mix.  I started looking online and discovered that they were really hard to find.  The ones I did find, were extremely pricey and had to be shipped from another state – sight unseen.  I told our vet, Dr. Gary, to let us know if he ever became aware of an Australian Shepherd mix that we could adopt.  He told me that they were very hard to come by, and he advised me to just keep checking the SPCA website.

So, I began checking the SPCA website regularly.  There were lots of dogs to adopt – but not many puppies – and no Australian Shepherds.  I was getting discouraged.  But, yesterday, I checked the site and low and behold, a whole litter of Australian Shepherd mix puppies had just arrived.  There were 8 of them – 7 of them were female!  They were so new to the SPCA that they didn’t have any pictures of them for us to see. 

Still not sure if I was ready to add a new member to our family, I asked Pat if he wanted to go check them out – kind of like dipping my toe in the water.  When we arrived at the SPCA, we learned they had a policy of not letting you see more than 3 puppies in a visit.  It is their way of assuring germ control.  Without any pictures to go by, we were rather at a loss.  Six of the females were in the 10 lb. range.  But, the runt of the litter was a little over 5 lb.  So, we asked to see her.  The person that was helping us said, “well, you need to know that she has one blue eye.”  WHAT???  The manner in which she said that was as if it was a negative thing!  Pat and I just looked at each other and laughed.

So, they took us into this glass room and sat us down.  When they brought this one blue-eyed Australian Shepherd mix puppy into the room, she brought tears to my eyes.  It was love at first sight!  There really was no doubt that she would be going home with us that day.  

Meet our new family member - Sadie

Tyler was still in school when we brought Sadie home.  

We couldn’t wait to see his reaction.

  

Sadie likes to cuddle!

R.I.P. Frankie

My heart is breaking because we just lost our beloved    4-legged family member, Frankie.  

When I was growing up, I never developed a relationship with a pet. We had lots of “outside” cats, but they never hung around for very long. So, I never could really understand the special bond that so many people had with their pets.

After the boys were born, Pat started working on me to prepare me that we needed to get a dog – “for the boys” he said. After many conversations and lots of convincing, I eventually gave in. Sixteen years ago, we took a trip to the animal shelter to see if we could find a dog that I would be willing to agree to. We hadn’t been there very long when I spotted the sweetest white and black dog – part Australian Shepherd – the other part a big question mark. 

The thing that captured my attention was that she had one blue eye.  The other one was partially blue and brown.  I was convinced she was the one. Right there, I said we should name her Frankie – after ol’ blue eyes himself, Frank Sinatra. And so began my relationship with a dog!

Pat trained her very quickly – we never had the annoying puppy phase that I had heard so much about. Frankie really became a family member, but more than anything, became Tyler’s “protector.” We think she could sense that Tyler was special and needed to be helped and watched more. Whenever Tyler went outside, she was right there by his side. No one would even think of messing with Tyler, because they would have had to go through Frankie.

That special relationship with Tyler continued – even when he didn’t need protecting anymore. When he was outside, she was always there. Frankie was always the family’s protector, too. Whenever Pat would go out of town, she became the one to watch over the rest of the family. She would pace the house at night, and when it was time to turn in, she wouldn’t take up her usual place in her bed. Instead, she would “camp out” on the stairs – in a spot where she had a good view of all of the doors into the house. She stayed there all night, making sure no one would hurt her family.

A few years ago, she was outside with Tyler when she spotted a rabbit. She started to take chase, but in so doing, ended up tearing her Achilles tendon. The surgery to repair this was something that we could not afford to do. We were so blessed when a very special friend paid for the surgery she needed. From that point on, she couldn’t move the same. Her leg was so stiff that she couldn't bend it and had to lay in a very awkward position. But she just kept right on going.

Then 2 years ago, we noticed a growth on her leg.       Dr. Gary diagnosed her with cancer. Again, our dear friend helped us get her the surgery she so desperately needed. There was no guarantee that it wouldn’t come back, but every thing was done that could be done.

After the cancer surgery, Frankie really began to slow down. But she still was our watchdog, making sure that no doorbell ever went unnoticed and that all strangers were very aware that she was the “protector.” (Her bark was definitely worse than her bite!) She still met us at the door with a wagging tail. She still went everywhere with Tyler.

But the slowing down really started to be obvious about 6 months ago. We noticed she didn’t seem to be hearing very well, her eyes were getting cloudy, and the pep in her step was almost gone. We finally realized at the end of last year that she had gone completely deaf and that she had also lost her bark. So, she stopped hearing the doorbell and stopped greeting us at the door, because she couldn’t hear when we arrived home.

Recently, Frankie started having trouble eating and breathing. When we took her in to see Dr. Gary, he told us that she had developed several tumors in her throat. That was probably one of the reasons that she lost her bark, too. He told us then that she probably didn’t have much longer to live. I was praying that things would happen naturally, because I just couldn’t bear the thought of making the choice to say “goodbye” to this trusted member of our family. But as time passed, things got so much worse. She began to really struggle with her breathing and was not able to do much more than sleep.

This afternoon, we made a very painful decision. Deaf, almost blind, barely able to walk or eat – we decided it was time.  This afternoon, when Dr. Gary examined her, he said that the tumors had spread throughout her body since he saw her a few weeks ago.  With all 4 of us around Frankie, Gary lovingly sent her on her way to Dog Heaven, where once again, she will be able to run, play, chase rabbits, and be young again.

Even though I know it was the right decision for Frankie, in my own selfish - human way, I wanted to keep her with us.  I will miss her more than I ever thought possible.  I can’t imagine that I will ever be able to love another animal in the same way, and honestly, don’t want to even give it a try. But, I know that eventually, we will need to do that for Tyler.

Today our family lost a very important member, and we are mourning her loss. 

R.I.P. Frankie! We love you so much!

Ahead Of Our Time

I received the following in an email today, and I couldn't resist posting it.

Being Green 

Checking out at the store, the young cashier suggested to the older woman, that she should bring her own grocery bags because plastic bags weren't good for the environment.  

The woman apologized and explained, "We didn't have this green thing back in my earlier days."

The young clerk responded, "That's our problem today. Your generation did not care enough to save our environment for future generations."

She was right -- our generation didn't have the green thing in its day.

Back then, we returned milk bottles, soda bottles and beer bottles to the store. The store sent them back to the plant to be washed and sterilized and refilled, so it could use the same bottles over and over. So they really were recycled.

But we didn't have the green thing back in our day.

Grocery stores bagged our groceries in brown paper bags, that we reused for numerous things, most memorable besides household garbage bags, was the use of brown paper bags as book covers for our schoolbooks. This was to ensure that public property (the books provided for our use by the school) was not defaced by our scribbling. Then we were able to personalize our books on the brown paper bags.

But too bad we didn't do the green thing back then.

We walked up stairs, because we didn't have an escalator in every store and office building. We walked to the grocery store and didn't climb into a 300-horsepower machine every time we had to go two blocks.

But she was right. We didn't have the green thing in our day.

Back then, we washed the baby's diapers because we didn't have the throwaway kind. We dried clothes on a line, not in an energy-gobbling machine burning up 220 volts -- wind and solar power really did dry our clothes back in our early days. Kids got hand-me-down clothes from their brothers or sisters, not always brand-new clothing.

But that young lady is right; we didn't have the green thing back in our day.

Back then, we had one TV, or radio, in the house -- not a TV in every room. And the TV had a small screen the size of a handkerchief (remember them?), not a screen the size of the state of Montana. In the kitchen, we blended and stirred by hand because we didn't have electric machines to do everything for us. When we packaged a fragile item to send in the mail, we used wadded up old newspapers to cushion it, not Styrofoam or plastic bubble wrap. Back then, we didn't fire up an engine and burn gasoline just to cut the lawn. We used a push mower that ran on human power. We exercised by working so we didn't need to go to a health club to run on treadmills that operate on electricity.

But she's right; we didn't have the green thing back then.

We drank from a fountain when we were thirsty instead of using a cup or a plastic bottle every time we had a drink of water. We refilled writing pens with ink instead of buying a new pen, and we replaced the razor blades in a razor instead of throwing away the whole razor just because the blade got dull.

But we didn't have the green thing back then.

Back then, people took the streetcar or a bus and kids rode their bikes to school or walked instead of turning their moms into a 24-hour taxi service. We had one electrical outlet in a room, not an entire bank of sockets to power a dozen appliances. And we didn't need a computerized gadget to receive a signal beamed from satellites 23,000 miles out in space in order to find the nearest burger joint.

Some of you, I'm sure, can relate to returning glass bottles to the store, having milk and bread and sweet rolls delivered to your door, using paper sacks to make school book covers and to wrap packages for mailing (still do some of that), riding bikes to school, roller skating on the sidewalks - as opposed to having a battery operated Razor to ride on, no escalators, but at the department store the elevator operator let me "drive" the elevator if there no customers on it.

And so ... the current generation laments how wasteful we old folks were just because we didn't have the green thing back then?  Personally, I think we were ahead of our time, and we didn't know it! 

Those were the days, my friend!

It's only a word ... Really?

Batten down the hatches! I'm about to drag out my dusty, old "soap box."  

This morning, I was brought to tears as I listened to a  DJ read from a blog written by a mother with a special needs child.  I am sharing this blog below because the subject matter touches me to the core of my being.

Lit Up Like a Parade

Thursday marked the end of a countdown my daughter started on January 6: Muses. 

Each night, after she listed her daily gratitudes and wrote in her diary, she would find the countdown calendar drawn on pink paper and dressed in white, silver, purple, and red glitter. With her very special pen, she would carefully cross off one more day, informing me of  the new countdown as she called out wishes of sweet dreams. As the countdown slimmed from a month, to a week, and then to days, her excitement grew.

“I don’t know if I should wear a costume this year or not, Mama,” she contemplated in the middle of a lesson on polygons for her sixth grade math class. “Mama. do you think I will get a shoe? What do you think the floats will look like? Which book should I bring with me to read while we wait? Should I take pictures with my cell phone? I am so excited for beads, Mama!

She was preoccupied with the parade, the Krewe of Muses, and our Mardi Gras holiday. Since our first parades as New Orleanians a few years ago, our Mardi Gras holiday has consisted of Muses on Thursday and d’Etat on Friday. Having a spouse working in the restaurant business, Lundi Gras and Mardi Gras were never spent together – he is busy insuring everyone else has their spirits high on these two special days. And because my daughter is a high-functioning autistic child, we stayed away from the crowds of the super krewes. Just in case.  

We have always watched the parades along the extended route, sometimes called the family zone, and it has been an enjoyable experience. We have reconnected with old friends, exchanging Mardi Gras wishes while catching up with the latest changes in our lives, and have met many new friends. My daughter has played along strangers, created art while patiently waiting for the show to start, and read her first Nancy Drew book along the parade route. Through the challenges that we sometimes face throughout the year, issues dealing with social and sensory issues, Mardi Gras and Muses was the moment of the year where it all faded away, where we were a normal family embracing the culture in our new city, creating memories of our new life. 

As we sat on the sidewalk along the parade route and patiently waited for start time, we talked about what we thought we would see, which bands we loved listening to best, and whether Elvis would make an appearance on his moped. We watched Pussyfooters pass by on foot, 610 Stompers in full uniform, and a few Bearded Oysters with high hair weaving through the crowd.  As parade time approached, as cliche as it sounds, there was a sparkle in my daughter’s eye and a smile so big, it made me wish that she could spend her life this happy – always. 

And then they came. Despite sitting on the ground, our feet on the street, they came in front of us, a gaggle of college kids holding to-go cups full of booze, cigarettes in hand, f-bombs flying out of their mouths with no care who was around them.  Once the parade started, we stood, them still in the street. Then the first marching band hit the road, forcing us all to back up, my daughter getting lost in a sea of twenty-somethings drinking a little too much. Some were local, others were not. She looked at me, her eyes tense.“Mama, I can’t see. And that guy keeps touching me with his beer.” 

Despite her 5′ 6′ frame, she was surrounded by young adults too involved in gossiping about who was going to be screwing who, which picture they had on their phones that were “too epic’ to not post on Facebook, and preoccupied by the booze pouring out of their red SOLO cups. 

One boy, over 6 foot, came dangerously close to starting my daughter’s hair on fire. Only one float had passed by. 

“Excuse me, Sir,” I said, ” do you think you could move over a bit. My daughter cannot see, you’ve spilled some beer on her, and you almost got her with your cigarette.” 

He looked at me blankly, then looked at her. He looked at my daughter from head to toe, staring at the patch on her coat that would indicate she was autistic to medical personal should an emergency arise. He sneered at me before laughing in my face.  

I put my arms around my daughter, warming her up, protecting her, whispering in her ear. 

The tall man with the bear hat on his head paid no mind to us. He didn’t move, either.   

“Hey, man! I need to move. This woman is bitching at me because her retard daughter can’t see the parade!” he shouted to a kid a few feet away.  

He turned back to us, looked my daughter in the eye, and shouted to no one in particular. “This retard is making watching the parade a challenge.” 

My daughter looked at me, knowing he was talking about her, and tears formed in her eyes. I wrapped my arms around her a bit tighter and whispered in her ear that the man was drunk, didn’t know what he was saying, and sometimes the best thing to do is to know the truth about yourself and ignore what other people say.  

My words didn’t matter, though. By then, she had heard what he had said, knew what he was implying about her, and she wanted to go home. Had she not been with me, I may have had a few choice words of my own, but I knew it wasn’t the time and certainly not the place. 

A night she had been looking forward to, planning and anticipating for a few months, had just been marred by that bad behavior of a grown person. 

“Mama. please, can we go home? He told everyone I’m a retard. I’m not a retard, am I, Mama?” she asked. The grin was gone, replaced by a quivering lip. The sparkle in her eyes had dispersed, and they were now filled with a flow of tears falling down her full, pink cheeks.  

“Are you sure, honey? We could walk somewhere else and watch the parade. We could move.” 

“No, Mama. I don’t think that would be a good idea. People there will probably think I’m a retard, too. People don’t want people like me at parades. They won’t let us in to watch the parade. I just know it.” 

I tried to comfort her with my words, encourage her, but the more I pushed, the more this man’s words hurt.We packed up the bag holding the the goods that had entertained us for the  two hours  we sat on the sidewalk, waiting for our special night. The bag that held my daughter’s snacks, sketch pad, books, and blanket. I took her hand, and led her to the car to go home.  

She cried in the car on the way home, having seen exactly two floats from Muses and having exactly zero throws to show for the verbal attack that she endured just trying to watch her favorite parade. 

“Honey, I am really sorry about what happened. Maybe we can try tomorrow night. Maybe we can go to a different spot, ” I said, trying to encourage her and save the rest of our Mardi Gras. 

“No, Mama. I don’t think I want to do Mardi Gras anymore. Not ever again.” 

A year ago, I asked my daughter what she most loved about Mardi Gras, expecting her to say the throws, the beads, and the pretty costumes. Her answer surprised me: “I don’t feel like I am different than everyone else during Mardi Gras, Mama. During Mardi Gras, everyone is a little weird like me." 

That night, she didn’t want to share her daily gratitudes, shrugging her shoulders and telling me she didn’t really feel grateful for much. She didn’t write in her journal, only wanting to forget the night had even happened. Her countdown calendar peppered the floor in tear-soaked pieces. A night that he had probably already forgotten by the next morning; a night that her broken heart will never let her forget. 

Retard! Some people might say, "Oh, it's just a word. You're being too sensitive! What's the big deal?"


Well - let me tell you!  Originally the term "mental retardation" or "mentally retarded" were medical terms with a specific clinical connotation referring to a person with limitations in mental functioning and skills. However, today the "R-word" (retard, retarded) is tossed around by many people as a synonym for "dumb" or "stupid" or as a way to show that something is "uncool."  I wish I had a nickel for every time I have heard a young girl say something like - "Oh my hair is so retarded today" or  "That movie was so retarded!"

Agghhhh!  Hearing the word used in this flippant manner is like the proverbial fingernails on a blackboard to me! It is downright hurtful!

Words have power!  What those people don't understand is that using "retarded" in this manner, only reinforces painful stereotypes that ultimately degrade people with intellectual disabilities.  I've heard it described this way - When used in the slang sense, "retard" means defective in quality.  It all traces back to the cold hard roots of the undesirability of disability!

In 2008, the Special Olympics launched a campaign to combat the inappropriate use of the R-word.  March 31, 2009 was the first annual day of awareness for "Spread the Word to End the Word."  One year later, the campaign reached 100,000 pledges, and today there are 239,390 pledges of support to eliminate the demeaning use of the R-word.

Parents - listen to the words your kids use.  If you hear them using the R-word in a demeaning way, explain to them how hurtful their words are to families with children that have special needs.  Please join me and others in carrying out the following pledge:

I pledge and support the elimination of the derogatory use of the R-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.  

A side-note  to the above blog:

One day after finding out about Emily being bullied on their parade route, the all female Krewe of Muses hosted a personal parade for her in their float den.  New Orleans locals called it Emily Gras.  They opened up their float den and let the little girl climb onto the shoe float and gave her a little of the Muses parade that she missed. 

  

A Day In The Life ...

So this is our normal morning routine:

I get up and go about getting ready.

Pat gets up with Tyler, unlocks the pantry and refrigerator, lets Tyler get his cereal and banana. He sits with him while he eats - then locks up everything, and Tyler goes upstairs to get ready for school.

I finish getting ready, and go into the kitchen to get breakfast for the road. Tyler yells down the stairs, "Mom, you look pretty." (Which I always have to chuckle about because he can't even see me.)

I say "thank you. Have a good day today." (That is code for -- don't get into any trouble at school today.) He says, "I will. I love you."

About the same time that I leave to go to work, Tyler leaves to go to school on the bus - saying, "Goodbye, dad, goodbye, mom" as he goes out the door.


This is what happened today:

I got up and went about getting ready.

Pat got up with Tyler, unlocked the pantry and refrigerator and let Tyler get his cereal and banana. He sat with him while he ate. But today, while he was sitting with him, Pat checked his email on his phone.

Tyler went upstairs to get ready for school.

I finished getting ready and went into the kitchen to get breakfast for the road. -- Total silence from upstairs.

I looked through the pantry for a breakfast bar - asked Pat about it, and he came to the pantry to find it.

I heard the front door open, and Tyler was going out the door -- without saying goodbye!

I said, "Goodbye Tyler. Have a good day." He turns around - barely - and ducks out the door.

I told Pat, "Tyler is up to something. He has something with him that he shouldn't have. If it's his iTouch, I will take it away, and he knows that because I've told him so."

We continue to look for the breakfast bar. Then Pat says, "Where's the loaf of raisin bread that I bought last night - and put right there." (pointing to an empty spot in the pantry.)

We both searched the pantry - and searched Tyler's room. Nothing!

So, Pat got dressed and followed the bus to school. He went in the back door of the school by Tyler's classroom just in time to see Tyler leaving his classroom (which he shouldn't be doing) -- going toward the hallway -- with the loaf of bread in his hands. (Several slices already missing.)

Pat calls his name, and Tyler turns around and says, "Oh - you caught me!"

And so it goes -- another day in the life of a child with Prader-Willi Syndrome. It's almost impossible to be vigilant 24/7.

It makes me tired ...

It's Riddle Time

What do you get when you cross Tyler with an empty house and a homework assignment to be helpful around the house?

Drum roll please --




How about dishes washed in a dishwasher filled with Soft Scrub bathroom cleaner ... and a big smile on his face when I got home.

That's So Special --

I don't take credit for this, but I thought it was great and wanted to share. To all the moms of children with special needs.

Regular moms know the names of all their friends. Special needs moms know most of their friends by their username. 

Regular moms judge other moms when kids have tantrums in stores. Special needs moms say to themselves, “Hmm, I wonder which disability he has?” 

Regular moms’ kids have a teacher. Special needs moms’ kids have a team. 

Regular moms talk about accomplishments. Special needs moms talk...about skills, as in play skills, conversation skills, life skills, social skills and vocational skills. 

Regular moms go out for dinner and a movie with their husbands every month. Special needs moms have a date night with their husbands every…wait, what decade is this? 

Regular moms meet for a ladies night out. Special needs moms get together at support groups and forums. 

Regular moms think OT means overtime. Special needs moms know more acronyms than a NASA engineer. 

Regular moms complain their husbands sit on the couch and watch TV while they do all the work. Special needs moms...well how about that? Some things do stay the same! 

(Just kidding dads, we know you do your part!)