Real World Problem Solving

During math this morning, one little boy was having a particularly hard time following directions, so Mrs. B. asked him to sit next to me. When math time was over and the students were asked to put their worksheets away, I looked down to see him hurriedly adding this to his paper...

The worksheet (about 3D shapes) was meant to help students learn the difference between a cone and a cylinder, but this little boy observed more. In his "real world problem solving" he recognized a need for something that nobody else seemed to notice. I choked back tears as lyrics from the children's songbook from church came to my mind:

I'll Walk With You

Lyrics: Carol Lynn Pearson

Music: Reid N. Nibley

If you don't walk as most people do,

Some people walk away from you,

But I won't! I won't!

If you don't talk as most people do,

Some people talk and laugh at you,

But I won't! I won't!

I'll walk with you. I'll talk with you.

That's how I'll show my love for you.

Jesus walked away from none.

He gave his love to ev'ryone.

So I will! I will!

Jesus blessed all he could see,

Then turned and said, "Come, follow me."

And I will! I will!

I will! I will!

I'll walk with you. I'll talk with you.

That's how I'll show my love for you.

Resource for Anyone with Health Conditions

Reading Momentum this morning, a magazine published by the Multiple Sclerosis Society, I came across a website that I had never heard of. It's called Caring Bridge, and is a place online where you can post health updates to keep family and friends informed. I scoped the website out and found myself wishing it would had been available back in 1994, when Don and I spent the better part of six months in and out of hospitals with Cody.

Those of you, who have family members with health issues, may want to take a look at Caring Bridge and see if it is a support that can be beneficial to you. Here is the link. Check it out!

http://www.caringbridge.org/about

Raising Angels

The similarities between this girl's story and mine are amazing. Please watch the short video. (You may want to grab a tissue.)

"Some people come into our lives, leave footprints on

our hearts and we are never the same."      Flavia Weedn

Fixing Autism

This is a very moving video about autism. Please watch...

Source: theautismsite.com via Amanda on Pinterest

Love Unconditionally...That's What Siblings Do

Source: 9gag.com via Chelsea on Pinterest

Special Bond Between a Rescue Dog and Dying Boy

Don called me from work this morning to tell me of a touching story he read on MSN about a little boy who is dying and a rescue dog. "You've got to post this story on your blog" he said. 

I turned on my computer, pulled up MSN's homepage and read the article. Don is right. It's a sweet story that will tug on your heartstrings and I want to share it with my readers.

Here is the link...

Lucas and Juno: Special bond of a rescue dog and dying boy

Guest Post/ Grandparenting a Child with Special Needs

I put my mother on the spot a couple of days ago and asked her to write a post for me. If you haven't already read 'How Do Grandparents of ASD Children Feel?', please click on the link and do so.


Before reading her words, however, I want you to know the first year of Cody's life was hard. Cody was born with multiple birth defects and we spent a great deal of time either in doctor's offices or in and out of hospitals. If it weren't for my mother, I could have never made it through that first year. She was by my side every step of the way. Years later, my mom even flew to Oregon twice within a six month period to take care of my younger children while Cody fought for his life in PICU.


From my point of view, grandparents play a significant role in raising a child with disabilities. My mother is an incredible person and I am happy that she wrote the following guest post:

Having Cody for a grandson has been an awesome experience. I can honestly say I would not want Cody to be any different than he is. He is truly a gift from heaven.

Everyone who has the opportunity to know Cody finds out what a great personality he has. I’m sure they will never forget him.

With that said, I have to say it has been hard at times to see my daughter, Cody’s mom, go through some very difficult times with Cody, most of them medical. I marvel at how amazingly strong she has become in facing these struggles.

Cody was my first grandchild. I didn’t have a preconceived idea what a grandchild should or shouldn’t be. I was never disappointed he was born different. My greatest worry has always been whether he is healthy or not.

I love Cody the same as all my grandchildren, we just have a different relationship and bond. I was privileged to be a big part of Cody’s first year. He loves his grandma, and grandma loves him!!

11 Things I Know For Sure

11) Swedish massages are delightful.

10) Tomatoes taste better straight from the garden.

9) The playground phrase, "Sticks and stones may break my bones, but words will never hurt me" is not true. Words can hurt.

8) Funerals suck.

7) Glitter and confetti are only fun if you're partying at somebody else's house.

6) If someone offers you a stick of gum, take it. It may be their way of saying your breath stinks.

5) Some people just shouldn't have children.

4) It is perfectly O.K. to say "No" sometimes.

3) The quote "When mom's not happy, nobody's happy." is spot on. 

2) Enjoy every phase of your life. There is truth to the Trace Atkins song Your Gonna Miss This.



and most importantly...


1) Having a child in the family with special needs is a blessing, not a curse.

The Dentist and Medically Fragile Children

Did I ever tell you about Cody's first experience at the dentist? On second thought, maybe I should reverse that. Did I ever tell you about the dentist's first experience with Cody?

Dr. Lax, an assistant professor of pediatric dentistry at Oregon Health and Science University, works with "medically fragile" children. Cody's first visit with Dr. Lax was memorable if nothing else. Cody was tactile defensive as a child and getting into his mouth was a chore for me, let alone a stranger. Don and I knew we would need to hold Cody's arms and hands down to prevent him from grabbing, shoving, hitting or pushing the doctor's hands away. What none of us saw coming, however, was Cody's right leg shooting straight up and kicking Dr. Lax in the head.

The good news is things only got better after that! (The only thing I can think of that might be worse than a blow to the head would be throw up.) Although Cody still isn't fond of people getting inside his mouth, he is able to make it through routine cleanings without his dad holding down his arms and legs. To read about Cody's coping techniques, click here .

The following information about toothbrushing and tactile defensive people was written by Jim Bubenik, a dentist who works with special needs patients in St. Louis, MO. I think those of you who have young children with special needs may find this of interest:

TOOTHBRUSHING FOR DISABLED PEOPLE

"All people with teeth need brushing. Brushing followed by flossing is better if possible. If your child will not let you near his mouth due to fear, unfamiliarity with the brush or tactile defensiveness around the face, here is how you systematically desensitize them: Start with just some wet gauze or a washcloth wrapped around your finger and move it around the lips until the child will accept this. Use a massaging motion. Put something sweet on it to give him extra incentive if needed. When he gets accustomed to this and seems to like it (this may take quite a few sessions), start to go inside the mouth. Back teeth seem to be less sensitive than the front ones on most tactile defensive people, so start on the back ones. Be patient. Don't worry if he clenches; you are making progress and he'll open later. When this has become routine, start putting the brush in the mouth to do the cleaning. If he doesn't like the bristles on the brush, just use the other end (the handle part) to desensitize him to the feel of that. Use a soft or ultrasoft bristle brush. Heat the bristles in hot water to soften them if needed, anything to get the child to take that first step. Stop if you are gagging him. Give him an old brush with something on it to make it taste good and let him play with it and chew on it by himself before or after the tooth brushing session. Expect that this systematic desensitization program will take several weeks but it is well worth the effort. Do it at the same time and in the same place every day. Give him/her a reward after the session is over.

Mechanical (electric or sonic) toothbrushes are all right only if your child will accept something like this in the mouth and they have learned to accept a regular brush first (NOTE: Children with seizure disorders should consult their physician before using any electric or sonic toothbrush as in some cases this may trigger seizures). Use toothpaste sooner or later in this series of steps but remember it is supposed to feel and taste good, so don't use anything that will turn your child off. The only real value of toothpaste is the fluoride in it. Use only a pea-sized drop of toothpaste. My all-time favorite flavor of toothpaste for kids is Oral-B Bubble Gum Flavor. Use water or fluoride rinse if they won't use toothpaste. Don't feel bad if your child never gets accustomed to toothpaste, it is not 100% essential. Most people with significant physical or mental disabilities need someone else to brush and floss their teeth for them. This may sound funny to you but I thoroughly recommend it after seeing many disabled people show dramatic improvement in dental health when a competent person takes over this part of their self-care."

You can find more information about Dentistry for the Disabled Child and Adult on www.our-kids.org .

If You Can Read This Without Getting Emotional, You're Either Heartless or Know Nothing About Baseball :)

Sensitivity, self-esteem, and acceptance are all values found in the following story about Shaya, a boy with learning disabilities, and his classmates. The story, told by Shaya's father, is called Perfection at the Plate and is found in the book Echoes of the Maggid by Rabbi Paysach Krohn, a friend of Shaya's father.

One Sunday afternoon, Shaya and his father saw his classmates playing baseball. The game was in progress and as Shaya and his father made their way towards the ball field, Shaya said, “Do you think you could get me into the game?”

Shaya’s father knew his son was not at all athletic, and that most boys would not want him on their team. But Shaya’s father understood that if his son was chosen in, it would give him a comfortable sense of belonging.

Shaya’s father approached one of the boys in the field and asked, “Do you think my Shaya could get into the game?”

The boy looked around for guidance from his teammates. Getting none, he took matters into his own hands and said, “We are losing by six runs and the game is already in the eighth inning. I guess he can be on our team and we’ll try to put him up to bat in the ninth inning.”

Shaya’s father was ecstatic as Shaya smiled broadly. Shaya was told to put on a glove and go out to play short center field, a position that exists only in softball. There were no protests from the opposing team, which would now be hitting with an extra man in the outfield.

In the bottom of the eighth inning, Shaya’s team scored a few runs but was still behind by three. In the bottom of the ninth inning, Shaya’s team scored again and now with two outs and the bases loaded and the potential winning runs on base, Shaya was scheduled to be up. Would the team actually let Shaya bat at this juncture and give away their chance to win the game?

Surprisingly, Shaya was told to take a bat and try to get a hit. Everyone knew that it was all but impossible, for Shaya didn’t even know how to hold the bat properly, let alone hit with it. However as Shaya stepped up to the plate, the pitcher moved in a few steps to lob the ball in softly so that Shaya should at least be able to make contact.

The first pitch came in and Shaya swung clumsily and missed. One of Shaya’s teammates came up to Shaya and together they held the bat and faced the pitcher waiting for the next pitch. The pitcher again took a few steps forward to toss the ball softly towards Shaya.

As the next pitch came in, Shaya and his teammate swung the bat and together they hit a slow ground ball to the pitcher. The pitcher picked up the soft grounder and could easily have thrown the ball to the first baseman. Shaya would have been out and that would have ended the game.

Instead, the pitcher took the ball and threw it on a high arc to right field, far and wide beyond the first baseman’s reach. Everyone started yelling, “Shaya, run to first! Shaya, run to first!” Never in his life had Shaya run to first.

He scampered down the baseline wide eyed and startled. By the time he reached first base, the right fielder had the ball. He could have thrown the ball to the second baseman who would tag out Shaya, who was still running. But the right fielder understood what the pitcher’s intentions were, so he threw the ball high and far over the third baseman’s head, as everyone yelled, “Shaya, run to second! Shaya, run to second.”

Shaya ran towards second base as the runners ahead of him deliriously circled the bases towards home. As Shaya reached second base, the opposing shortstop ran towards him, turned him towards the direction of third base and shouted “Shaya, run to third!”

As Shaya rounded third, the boys from both teams ran behind him screaming, “Shaya, run home! Shaya, run home!”

Shaya ran home, stepped on home plate and all 18 boys lifted him on their shoulders and made him the hero, as he had just hit the “grand slam” and won the game for his team.

“That day,” said the father who now had tears rolling down his face, “those 18 boys reached their level of perfection. They showed that it is not only those who are talented that should be recognized, but also those who have less talent. They too are human beings, they too have feelings and emotions, they too are people, they too want to feel important.”

I May Never Be an Empty Nester

The following post was written by Rick Law, an attorney who deals with estate planning, medicaid assistance and disability law.

"My wife and I have almost reached the empty-nester stage. We look forward to that event with excitement, and a little anxiety too. We have raised four children, ranging in age from 32 to 17. After such a long run in parenting minors, it’s time to move on to that more senior stage referred to as being an empty-nester.

Not everyone becomes an empty-nester. And although we sometimes joke about the child who 'failed to launch' due to the inability to get a career, there’s another group of parents who will never know the joy of seeing their child be fully self-supporting. In my office it is not uncommon for me to sit across the table from an 83 year old parent who is still the primary caregiver for a child who is chronically disabled."
                                                                                                        
When I read the last sentence of this article, I cried.

I cried because I was led to believe by medical "professionals" that my son wouldn't live long.

I cried because somewhere in my heart I held hope that one day I would have a somewhat "normal" life. 

I cried because I don't want to continue sleeping with a baby monitor in case Cody has a seizure during the night.

I cried because my friends are all becoming the aforementioned "empty nesters" and I'm still dealing with a child who is completely dependent on me.   

I cried because Cody realized I was crying and, being the sweet spirit that he is, said "Are you doing okay? I hate it when you have a cold."

I cried because I feel guilty for thinking selfishly.


Tomorrow is Cody's 30th birthday. Tomorrow I will be cheerful and focus on the blessing Cody has been in my life.

But today, I cry.


To read Rick's article in its entirety, click on the following link...
83 Years Old and Never an Empty-Nester

God Sent to Me an Angel

God sent to me an angel,

it had a broken wing.

I bent my head and wondered

“How could God do such a thing?”

When I asked the Father

why He sent this child to me,

the answer was forthcoming,

He said “Listen and you’ll see.”

“My children are all precious,

and none is like the rest.

Each one to me is special,

and the least is as the best.

I send each one from Heaven

and I place him in the care

of those who know my mercy,

those with love to spare.

Sometimes I take them back again.

Sometimes I let them stay.

No matter what may happen

I am never far away.

So if you find an angel

and you don’t know what to do,

remember, I am with you,

love is all I ask of you.”

by- Paul Dammann

Gifts That Say Something

Over the years, I have ordered several items for Cody (visually impaired) from Speak to Me Catalog. They offer numerous talking products such as: electronic and plush toys, watches, clocks, kitchen items, calculators, graduation gifts and much more.

You can browse and order items from Speak to Me Catalog by visiting their website http://www.speaktomecatalog.com/ . They also have a link in the bottom right hand corner of their home page, where you can request to have a free catalog sent to your home.

Como Se Dice "Don't Break My Routine" en Espanol?

Cody loves holidays AND speaking Spanish, therefore, I think it's appropriate to air out my archives and share the following experience, originally posted October 4, 2010.

When Cody was in high school, he chose Spanish as one of his electives. He enjoyed it so much that he took it his sophomore, junior and senior year.

Every day, at the beginning of the period, the entire class would, in unison, say the alphabet in Spanish. One particular day, this important part of the routine was skipped. Cody became upset and no one could figure out why. Of course Cody would never just come out and say what was bothering him. By the end of the period, tears were streaking down his cheeks and when the bell rang, he would not budge! When the teachers and peer tutor finally figured out Cody was upset because the class didn't say the alphabet, they tried to convince him it would be okay. The class would be sure to remember to say the alphabet the next day. However, no amount of coaxing or persuading would get Cody out of that desk!

When students of the next period began to arrive, the teachers realized something needed to be done about Cody, who by this time was full on crying and causing a scene. They decided to pick Cody up, desk and all, and move him into the hall.

I don't remember what happened after that. Obviously Cody eventually calmed down and got over it, but I'm not sure his Spanish teacher ever did.

Date Nights and Stale Relationships

My husband and I try to go out at least one night a week for two reasons:

#1- We receive much needed respite service for Cody.

I want to emphasize "much needed" because, although Cody is pleasant and pretty easy to take care of, he isn't the only one growing old here! Parents of "normal" children eventually get to see their offspring grow up and leave the nest.

Although I shouldn't , I tend to envy the majority of people my age. They have the luxury of becoming self-centered (for lack of a better word). Empty Nester's are able to go to bed, wake up, go on a date, take a vacation, grocery shop, take a walk, visit a friend and actually be spontaneous. Gone are the days when they must sleep with a baby monitor, prepare baths, fix school lunches, hire a sitter, etc.

Hence, Don and I appreciate respite care.

#2- We both work outside the home, so our time together is very limited.

Weekly "date nights' are suppose to strengthen the marriage bond, but in my opinion, simply spending time together is not enough to keep relationships from getting stale.

For instance, Don and I went to the theater to watch a movie last night. Seated a few rows ahead of us was a young couple, probably in their late twenties. The girl had her head on her date's shoulder. His arm was around her and he leaned over and kissed her at least once (I didn't gawk at them the whole time, okay!)  I started reminiscing (in my head) about the good old days when Don and I were dating. We lived in a small town where the only place to go was the movie theater. I reached over and touched Don's leg, thinking he might actually grab my hand or something. He didn't. A while later, I sat as close to Don as I possibly could with the chair arm between us. He didn't budge. Before the movie was over, I actually tried leaning on my husband to see if he'd make a move and put his arm around me. Nope.

As soon as we got into the car to come home (about a 15 minute drive), I made my feelings known. Don said, "I'm sorry. I don't mean to ignore you."

Now, here's the part where you may want to stop reading if your my mom or my children.

As we turned the corner into the sub division where we live, my dear husband actually said, in the sexiest, most excited voice he could muster up, "I have an idea of something we could do tonight!" Do you want to guess how I responded?

A- Hell yeah. Bring it on!
B- Okay. I like having sex after an unromantic evening of being completely ignored.
C- Are you effing kidding me?!

Stale-
kept too long,
no longer fresh,
inneffective,
bored because of doing too much of the same thing,

Egg Hunt for Visually Impaired Children

When we lived in Oregon years ago, Pacific Northwest Bell use to organize and provide special beeping egg hunts like the one in this video. Cody loved to participate.

Ah...the good old days. I kind of miss them.

Siblings as Saviours

The title speaks for itself. Please check out the following post at Autism Blogs Directory:

Autism Blogs Directory: Guest Post by Sharon: Siblings as Saviours.: "Siblings as Saviours. Being the sibling of an ASD child is a tough gig I reckon. There's the meltdowns to deal with. The odd mannerisms. The ..."

God Chooses Mom for Disabled Child

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments forpropagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.

"Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."
 
Written by Erma Bombeck
September 4, 1993

Gag Me!

Today, instead of surrendering to Cody's request to eat Kraft Easy Mac for lunch, I baked him a Marie Calendar's Chicken Pot Pie. That's when I decided I'd share with you the following memory:

When Cody was a baby, I tried introducing him to food that wasn't pureed and he would gag when anything remotely lumpy was spooned into his mouth. To solve the problem and get him to eat more of a variety, I bought an amazing little tool called a Food Grinder. It was easy to use at home and convenient to throw in his diaper bag when we were on the go. It looked exactly like this...




One evening, when Cody was around two, I baked some Swanson Chicken Pot Pies for dinner. (I was young and hadn't perfected my cooking skills.) Anyway, knowing Cody would gag at the first hint of a pea or potato chunk, I put his pie through the grinder, minus the hard crust around the top edge. He loved it and polished it off. I ground up another. He downed that too. Hesitantly, I ground up one more and he ate it as well. Three! Cody, at age two, had eaten three pot pies for dinner.

I don't remember when Cody finally got over the lump issue, but he never did polish off that many pot pies again and I doubt he ever will.

Embarrassing Things Kids Say

Katelyn, her friend Kaitlen and I were having a conversation today and the following memory came to mind as we were reminiscing:

Close to ten years ago, one of Cody's respite workers took Cody on an outing. She had a couple of Japanese exchange students living with her at the time, so they went along. That evening, after she brought Cody back home, I asked him, "Did you have fun Cody? What did you do?" He replied, "We went to the park with the Japs."

(Cody's autistic and loves to shorten words. He had no clue that what he said would be considered racist and socially inappropriate.)

I know you have embarrassing stories to share regarding your children. Please, do tell!