Fatigue, Wellbeing and Parental Self-Efficacy in Mothers of Children with ASD

Raising a child with an Autism Spectrum Disorder (ASD) presents significant challenges for parents that potentially have a impact on their health and wellbeing. The current study examined the extent to which parents experience fatigue and its relationship to other aspects of wellbeing and parenting. Fifty mothers of children with an ASD aged 2-5 years participated in the study. Compared with mothers of typically developing children, mothers of children with an ASD reported significantly higher fatigue, with overall scores in the moderate range. Factors associated with high levels of fatigue were poor maternal sleep quality, a high need for social support and poor quality of physical activity. Fatigue was also significantly related to other aspects of wellbeing, including stress, anxiety and depression, and lower parenting efficacy and satisfaction. The need for interventions to specifically target parental fatigue and its impact on families affected by ASDs both in the short and long term is clearly indicated.


Giallo R, Wood CE, Jellett R, Porter R.
SourceParenting Research Centre, Australia.

Raspberry Sherbet Dessert

Pin It

Ingredients:

2 cups Mother's Coconut Cookies (the long, washboard type)

1 Cool Whip- 16 ounce

1 cup chopped pecans or walnuts

1/2 gallon raspberry sherbet (or flavor of choice)

Directions:

Crumb cookies coarsely. Fold cookies and nuts into Cool Whip. Spread in a 9x13 pan. Freeze. Softened Sherbet and spread on top of frozen cool whip layer. Freeze. Serve with whipped cream. Garnish with cookies or fresh raspberries.

I made this for a baby shower and it was a huge hit. It's a perfect dessert for a hot summer day.

I LOVE Step Up - X Games, Not Dance :)

These two clips are unbelievably awesome. I love X Games Moto!


Step Up




Best Trick

The Escalator Dilemma

If you don't find this funny, you may want to get help. Something may be seriously wrong with you.

Bonding Moment Between Brothers

"Cody. You can't hear my brain."

Thank goodness Chase! We are probably better off not knowing what goes on inside your head. :)  On the other hand, it would make life a whole lot easier if we could "hear" what goes on inside Cody's. :)

Chicago, You Are Killing Me

Cody loves music and goes through phases where he becomes fixated with one band. Just a few examples of his obsessions over the years are Phil Collins, Blues Traveller, Poison, The Eagles, Tears for Fears and INXS.


Cody's brother, Chase, learned the hard way NOT to ask Cody what he wants for Christmas and his birthday. One time Chase had to go to Wal-Mart to find Cody a Tina Turner CD. He felt like a complete moron going to the cash register with just Tina Turner, so he tried to counter it by purchasing Korn as well. Then there was the year Chase looked all over town for the song 'If You Leave' and finally had to order it from a local music store. Chase was mortified when an employee from CD Warehouse called to let him know his 'Pretty in Pink Soundtrack' had arrived. The next year Chase smartened up. When Cody's birthday rolled around and he asked Chase to buy him Bette Midler's 'Wind Beneath My Wings',
Chase opted to download and burn it from Limewire.


When it comes to Cody's random music requests, one particular Christmas really stands out. 'Dude Looks Like a Lady' was the only thing Cody asked for that year so, while the rest of the Christians in the world were playing Christmas tunes, we opened gifts at 6:00 a.m. to the sweet jingle of Aerosmith.


Cody's latest infatuation is the band Chicago. He particularly likes their song 'Along Comes a Woman'. To put it in proper perspective for you, that song has 489 hits on his iPod whereas all the others average around 30. He is driving me absolutely crazy with this particular fascination. Every single time Cody hears the word "Chicago" (mostly on television), he starts humming that song. Well, it's really not humming, it's more like "Da da da da da-da-da", but he's got rhythm and can carry a tune, so I know it's 'Along Comes a Woman'.


Let me just say, you may never realize how often the word "Chicago" is used unless you spend a day with Cody. Any takers?

Baby Shower Ideas

My aunt Cindy and I recently hosted a baby shower that had two BIG hits...

1) A Diaper Cake

2) Mary Janes made from double-sided scrapbook paper and filled with mints, pink M&M's, and Hershey Kisses

 
 
 
 
 
 
 
 
 
 
 
 
 
If you are interested in downloading the pattern for these adorable shoes, click on the following link...
 
Mary Jane Candy Holder

 

For a diaper cake tutorial, click here...

 

Diaper Cake
 

For more baby shower ideas, check out my post Asher's Baby Shower.




 

Lemon Crinkle Cookies

Ingredients:

1/2 cup butter, softened

1 cup granulated sugar

1/2 teaspoon vanilla extract

1 whole egg

1 teaspoon lemon zest

1 Tablespoon lemon juice

1/4 teaspoon salt

1/4 teaspoon baking powder

1/8 teaspoon baking soda

1-1/2 cups all-purpose flour

1/2 cup powdered sugar

Directions:

Preheat oven to 350 degrees. Grease baking sheets lightly with non-stick cooking spray and set aside. In a large bowl, cream butter and sugar together until light and fluffy. Whip in vanilla, egg, lemon zest and juice. Scrape sides of bowl and mix again. Stir in slowly all dry ingredients except powdered sugar. Scrape sides of bowl and mix again briefly. Pour powdered sugar onto a large plate. Shape a teaspoon of dough into a ball and roll in powdered sugar. Place on baking sheet and repeat with remaining dough. Bake 9-11 minutes or until bottoms begin to barely brown and cookies look matte (not melty or shiny). Remove from oven and cool cookies about 3 minutes before transferring to cooling rack. If desired, dust cookies lightly with powdered sugar before serving.

This recipe was graciously given to me by my neighbor Tiffany, who is always baking up something delicious.

Thirty Years Ago

Things you may or may not remember about the year 1981...

Ronald Reagan became US President.

Lady Diana Spencer married Charles, Prince of Wales.

Researchers found the wreck of the Titanic in the North Atlantic.

The first test-tube baby was born.

Scientists identified the Aids Virus.

First flight of the US Space Shuttle Columbia.

MTV was launched.

Muhammad Ali finally retired with record of 55 wins and 5 defeats.

Popular movies-

Raiders of the Lost Ark

Superman II

Nine to Five

Arthur

The Cannonball Run

On Golden Pond

Chariots of Fire

Popular Musicians-

John Lennon

Blondie

Sheena Easton

Olivia Newton-John

Michael Jackson
Queen

David Bowie

REO Speedwagon

Popular Television Shows-

Dallas

60 Minutes

The Jefferson's

Three's Company

Alice

The Dukes of Hazzard

Too Close for Comfort

M*A*S*H

One Day at a Time


Happy Birthday Cody. You have inspired more people and touched more hearts in your 30 years than most people will in a lifetime.

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

Cody's Choice

Don and Cody have an ongoing argument about how to pronounce the word coupon. Cody pronounces it "cue pon". Don says "coo pon". I captured their most recent go-round and, although my ears get tired of hearing it, I must admit the two of them have a fun loving, unique relationship.

Don- It's Coo Pon (exaggerated).

Cody- Cue Pon (even more exaggerated)

Don- There's no Q in coupon dipstick.

Cody- (voice becoming high pitched) Excuse me?!

pause

Cody- How come you call me a dipstick?

Don- It's either dipstick or dipshit. Which one do you want it to be?

pause

Cody- Dipstick



I guess, if given a choice between the two, I'd choose dipstick too.

Autism and Multiple Sclerosis/ Could There Be a Link?

I stumbled across the following article by Sara Lapinski and was completely taken aback. Because my husband has MS and we have a son with autism, I really want to do my part in getting this information out there.

There was no blogger icon, but I've included the link http://www.ageofautism.com . It's a rather lengthy post, but well worth the read.

Child with Autism and Mom with Multiple Sclerosis


Does your child have autism? Do you have MS? No one talks about it, but there seems to be a link, a link between parents of children with autism being diagnosed with MS. I can’t find anyone who is looking into this….why? Why can’t we find information about the link between the two anywhere?

Let me take a step back. For years now I have suffered from dizziness, headaches, vision issues, and other strange symptoms. I had my first MRI and yes there were small, possible spots of demyelination, but I was reassured this is common in most people walking around today. I was told many interesting things by doctors, but most settled on me having an anxiety disorder.

I was told, “You are dizzy because you have four kids”, “You can’t find your words because you have anxiety”, and better yet, “This is all between your ears, Sweetie”. So I talked myself into being very stressed out, and felt my dizziness was because I was anxious.

Years later, after not thinking about MS again, I received an official, unexpected diagnosis of optic neuritis. I knew right away what this meant, and headed back to the neurologist. I told him of my optic neuritis, commonly one of the first signs of MS, and I told him that I felt like I was occasionally slurring my words. He said, “Everyone slurs their words, I slur my words all the time. Look at you, you’re fine, your exam is fine, trust me, those old spots on your MRI could have been dust on the lens.” He agreed to do a second MRI, just to be safe.

About an hour after doing my second MRI, I am in the waiting room. The doctor comes out and signals me to come back. He says, “Well you do have MS, I can’t believe it, I really was not expecting this.”

Wait a minute…this sounds eerily similar to something I had heard years earlier, not at an appointment for me, but at an appointment for my son. You see, my son was not developing typically. We started early intervention at 10 months of age because my husband and I were noticing some subtle delays. As a first time mom, I just had the feeling something was wrong. At 12 months of age, I started questioning doctors about autism. My little guy just didn’t’ seem like the other kids his age. I had read some articles on red flag signs and, when I did, I felt so scared inside. It sounded just like my baby. The doctors and professionals reassured me “he is fine”. “He just has a little delay”. “He is a boy, you are a nervous first time mom, and you need to relax”. These are just a few of the many things I heard.

Every six months we went back and back. “He would not be looking you in the eyes if he had autism, he is so social, and he is so affectionate” the doctors told me. When my little guy was 3 ½, I took him back again. At this point his speech was completely repetitive and his behavior was spiraling downward. The doctor observed my son for 10 minutes before giving him a diagnosis of autism. I can still hear the doctors words vividly in my brain, “I don’t know how we missed this, I am so sorry.”

One might think I would be upset at the way I have been treated and doubted by doctors over the years, but I am not. Actually I feel fortunate. I received a diagnosis of MS in 2 years, the last I heard the average person waits 6 years for a diagnosis. Yes I was blown off by doctors about my son’s autism but, he did start in early intervention at 10 months and he has always had extreme amounts of therapy. He has worked so very hard, and I am so very grateful for where he is today. Could he possibly be farther along had he been qualified earlier for behavioral interventions? Possibly, but he did very well with the services we had.

What I am mad about is why now when I talk to so many families of children with autism do I find out that one of the parents has MS. Why when I tell my child’s specialist for autism that I have MS does he say to me, “I am so sorry, but unfortunately, it is not uncommon for children in my practice to have a parent with MS.” Why do the doctors who are “ahead of their time” feel that autism is an autoimmune disorder, just like MS? Why are doctors treating MS similarly, almost identically, the same way biomedical doctors are treating autism? Why isn’t the relationship of the two disabilities being tracked? Why can’t I find any research on the correlation between MS and Autism? Will one of them give us answers to the other? Can MS treatments help autism or vice versa? Should I have been warned that I might be at high risk for an autoimmune disorder after my son’s diagnosis? How can parents take care of a child with a disability if they themselves don’t feel good and have no idea what their future of their MS may hold?

Do parents in my situation need to be told in 10 years that there is a correlation between MS and Autism? Do we have to be told we don’t know what we are talking about, to find out later we were right?

I can’t help but think of Chris Martin from Coldplay’s words in his song Clocks, “Am I part of the cure, or am I part of the disease”. Please help parents in my situation be part of the cure.


Sarah Westerfield Lapinski

Could This Be Talking About Autism and Siblings?

I've heard this song numerous times and never paid attention to the lyrics until now. Please listen and let me know your thoughts.

What Were You Doing Twenty-Two Years Ago?

My son, Casey, celebrates his 22nd birthday today. So, just for fun, I put together a list of some of the goings-on in the year 1989...

One gallon of gas was 97 cents

Postage Stamps were 25 cents

The Mirage Hotel and Casino opened in Las Vegas as the first huge resort hotel

Exxon Valdez spilled 240,000 barrels of oil into the ocean

George Bush Senior became President of the United States

Toyota launched it's luxury brand the Lexus

A massive earthquake hit the San Fransisco Bay area minutes before the world series between the Giants and A's

The Berlin Wall came down

Serial Killer Ted Bundy was executed in Florida's electric chair

Nintendo released its popular handheld video game player- Gameboy

San Fransisco 49ers won Superbowl XXIII

Batman was the top grossing film

The Simpsons premiered

The Sega Genesis was released

Popular movies: Crocodile Dundee II, Big, Three Men and a Baby, Die Hard, Cocktail, Beetlejuice

Popular TV shows: The Cosby Show, Roseanne, Cheers, America's Funniest Home Videos, The Golden Girls

Songs that hit number one: Like a Prayer/ Madonna, Baby Don't Forget My Number/ Milli Vanilli, Every Rose Has It's Thorn/ Poison,  We Didn't Start the Fire/ Billy Joel


Happy Birthday Casey!

"Rodman Needs More Tattoos"

"Whose Line Is It Anyway?" was one of abc's funniest comedies. Two skits that I really loved in particular were, "The Telethon for NBA Players" (below) and the German version of "The Millionaire Show".

GSN is now airing "Drew Carey's Improv-A-Ganza" and it's filmed in Las Vegas. Anyone want to go see it with me?

11 Things I Could Live Without, but Wouldn't Want To

1) Ketchup- Eating foods such as fries and hamburgers wouldn't be near as enjoyable without this flavorsome condiment.

2) Coke- I suppose I could drink that copycat soda that starts with a P, but I prefer the real thing.

3) Pizza Cutter- I love this little gizmo! Click here to find out what magnificent things this gadget can do.

4) Body Pillow- My knees rub together and hips ache in the morning if I can't curl my legs around this at night.

5) Blow Dryer- Mine quit on me last week and I went two days without. Not pretty.

6) Remote Controls- I am old enough to remember getting up and switching the dial on the TV. I like lazy better.

7) Ice Cream- Living without ice cream would be extremely sad. I scream, you scream...

8) Mascara- In my opinion, every woman would look better wearing a little mascara.

9) Vacations to Disneyland- The Happiest Place on Earth needs me and I need The Happiest Place on Earth.

10) Refrigerator Ice Maker. Remember filling those little ice cube trays and spilling water all over the floor as you tried to put them in the freezer? And there was always someone who filled them too full or not full enough.

11) Television- I know it's hard to believe, but there are people who actually want to live without television in their home. If I didn't have a TV, I suppose I would read a lot more, play more board games and maybe even do jigsaw puzzles. I just can't imagine never laughing my butt off watching "The Office" again or nagging my husband to do projects around the house because I was inspired by "HGTV".

There you have it. 11 things I could live without, but I'm sooo glad I don't have to.

Funny Words and Expressions

A few days ago, Katelyn and her friend Nate were having a conversation and Katelyn used the word "traipsing". Nate thought it was hilarious. He had never heard the word and was sure Katelyn was making it up. The two of them decided to look up "traipse" in the dictionary and this is what they found...

Traipse [Trayps] - to wander without purpose; to walk around casually and without a specific destination

Then I started thinking, Nate felt the way I did the first time I heard my husband use the expression "Full of Piss and Vinegar". I wrote about it in my August 2010 Archive, but I'm posting again for those of you who may have missed it the first time. Here goes.

Yesterday my husband told our son he was "Full of Piss and Vinegar". I asked him "What does that mean? I have been married to you for twenty-eight years and I've never heard you say that!" He told me "I don't know. It's a southern thing."

Then I started thinking about some of the funny expressions that I've heard my parents and grandparents use. Here are a few:

Doohicky- anything you can't put a name on
Knee High to a Grasshopper- describes someone who is short
You're Cruisin' for a Bruisin'- you're going to get in trouble
I Have a Bone to Pick with You- you disagree and want to discuss it
Mind your P's and Q's- Be good
Yessirreebob- Yes! For sure!
Oh Horse Feathers!- I don't believe it.
Fork Over- Give me some
School of Hard Knocks- learn the hard way
Quit Horsing Around- quit goofing off

I think it's interesting how some expressions change over time. I remember the first time my son heard me say "soused". He thought I made it up until he heard an older gentleman say it.

What goes around comes around. I'm sure children of the younger generation will laugh at their parents when they say things like...

I'm Down- I'm okay with it
PHAT (fat)- Pretty Hot And Tempting
Tight- very close, as in best friends are tight.
Word Up?- "What's going on?"
Sick- meaning cool or neat

Can you think of other funny words or expressions?

BINGO Should be Fun, Right?

Tuesday is BINGO day at Cody's Day Program. It has been for years and for years, Cody has played with the same BINGO card.

Yesterday, while meeting with the program's coordinator concerning Cody's behavior, we realized that he is getting upset on Tuesdays because they switched his BINGO card. A very well meaning employee worked hard at making new cards in braille so Cody won't always have to play with the same one. The problem is, and I'll bet those of you with ASD children have already guessed, Cody has been playing with that same card for a long time. He is use to it. He wants to play with it and he wants it back.

Because I'm worried about the employees finding Cody's original card and think somebody may need to make him a new one, I asked Cody to give me the numbers. This is what he said:

B- 13, 3, 11, 10, 6

I- 25, 22, 19, 29, 16

N- 34, 37, free, 39, 42

G- 56, 50, 46, 58, 51

O- 61, 72, 65, 69, 71

Let's hope, for the sake of everyone's sanity, Cody's BINGO card is found before Tuesday rolls around again.

What Could Possibly be Worse than Having a Root Canal?

Nearing the end of our car lease, Don and I are trying to decide between buying it or leasing a new car. We've been looking. We've been liking! However, it's hard to deal with salesmen when they all act like this...



I detest car salesmen!

Wish us luck.

A Moment of Reflection on Independence Day

Grass Fight!

Unless he is in a swimming pool or wearing his "bee hat", Cody is miserable when he is outdoors. He is also a tad bit tactily defensive. That is what makes the following photos so great. Late last night, Don lured Cody outside with fireworks and they ended up in a one sided grass fight. Believe it or not, Cody was the instigator.

Here Cody is grabbing a handful of grass,

trying to throw the grass in Don's face,

then putting it all over his own shirt.

I caught Cody trying to sneak a handful of grass into the house.

Life Is Random, So Am I

...should be Cody's motto. He has such odd, yet concrete moments of recollection.

Cody and I were watching old Sesame Street programs on Netflix and when the following segment came on, this is what he said... "When we were watching this in Eugene, your nose was itching...member?



Then he asked me, "How come your memory is not as good as mine?" when I told him I didn't remember.

We lived in Oregon over sixteen years ago and Cody knows where I was and what I was doing when this particular episode came on television.

That, my friends, is autism at its finest. :)

Predictably Unpredictable

I hate snail mail. Not only do I rarely have anything fun or exciting in my mailbox, but the pile of envelopes and whatnot ends up all over my kitchen counter.


This morning I decided to go through some old mail I had stashed away in one of my kitchen cabinets (out of sight, out of mind). As I began ripping up receipts/papers that were obviously no longer needed, Cody freaked out...in a good way.


He asked me what I was doing, so I told him, "I'm ripping paper. Do you want to help?" Usually, when I invite him to do something out of the ordinary, he will tell me "No." Today was an exception. He said "Yes!"


Below is a pic of him thoroughly enjoying himself. Who knew?

It looks like Cody's going to get a new chore.