Tuesday, December 21, 2010

A Great Explanation of Autism

Really good article to help explain autism: http://www.sfgate.com/cgi-bin/blogs/lshumaker/detail?entry_id=79564

Saturday, December 18, 2010

It's Beginning to look a lot...

...like Valentine's day. Huh? The stores are starting to show their Valentine's wares! Before Christmas.

When I was a kid and a young adult, the stores were "magically" transformed into a winter wonderland overnight for the Friday after Thanksgiving sales. Each year the decorations seem to go up earlier. Maybe that is why I don't feel as though it is Christmas any more.

Isabella doesn't get it yet. She likes the decorations but doesn't really understand that gifts will be given for Jesus' birthday. That's okay. She will enjoy it more without the anxiety of trying to fall asleep on Christmas Eve!

Our Bells has been having some anxiety issues lately which are not uncommon to people on the spectrum. It seems that the more she progresses in some areas the more she regresses in others. Blessedly, we are still ahead of the game.

My wishes for a time a blessings to you all. May the spirit of Christmas reach you and yours as we celebrate God become man.

Much love, g

Thursday, November 18, 2010

"We're not Booboo and Isabella any more;...

...we the Chef Girls in the whole world!" This was Isabella's exclamation to me when we were preparing waffles yesterday. Doesn't that just make you want to plotz?! Too cute as far as I'm concerned.

Her comment and her ability to express herself made me happy and sad. You see, there are so many people on the autism spectrum who are unable to express themselves verbally. For their loved ones, it might be a guessing game as to what their needs are. I am happy that Bells can express herself and sad when others can't.

Bells doesn't show many outward signs of her condition. If you don't spend much time with her you would just see a "normal," five year old girl. It's when you are in her company for a while that you see the stimming by waving around a piece of paper she has torn, leaving behind shredded paper in her wake or wonder at her astute observations not realizing she is repeating scripts from a tv show (delayed echolalia), one way she learns to express herself. She also won't poop on the toilet yet; a common problem in our community.

We are able to take Isabella out for a meal with little possibility of a meltdown. Many, many families on the spectrum aren't so blessed. Their worlds are very small, unable to venture out to do the simplest of things with their child(ren) for fear of the world being too much for these special loved ones. Their neurotypical children are pulled in as well and their parents have the guilt of that on their already burdened shoulders.

Yes, we have it good. My heart goes out to the families who are fighting the fight and are leading the way. Two blog sites you might be interested in by moms who are making a difference are
A Diary of a Mom and Rhema's Hope. Want to know how the mind of a person with Asperger's Syndrome works? Visit Aaron at Life on the Other Side of the Wall.

I love this community. gail

Monday, November 8, 2010

How Appropriate


Today’s Devotional
November 8th, 2010
Sweet Sleep
When day is done and you lie down to sleep, do you rest serenely? Do the experiences of the day pass through your mind, or tomorrow’s unknowns cause you distress?
Because your steadfast love is better than life, my lips will praise you.
Psalm 63:3
What can change that? The Old Testament speaks of peace as prosperity, health and fulfillment, but it also talks of wholeness and harmony based on relationship. The absence of strife (peace) is found only through the presence of God. David says that "the Lord has set apart the godly" and hears when you call to Him. He tells you to "ponder in your own hearts on your beds, and be silent." (Psalm 4:3-4) David took refuge in that. You, too, can be fully aware of God’s presence and His willingness and ability to answer your prayers.
Your difficult circumstances, dangers you encounter, or illnesses may not go away. But you can have the confidence of David. Unrest and instability in the nation affect its leaders. Military forces around the world face threats every day. Pray for them. Put your trust in the Lord. Let your inner turmoil be quieted. Then close your eyes and enjoy the sweet sleep only God can give.
Recommended Reading: Proverbs 3:19-26
J.K. – Your Prayer Team writing staff

I must remember that the battle is not mine but the Lord's. My son is not my son but God's. Lord, give me, please, the strength and integrity to open my hands and let go of the firm hold I think I have on my children. g

Thursday, October 14, 2010

Trying to Get in the Groove Again

Getting back into regular blogging in this age of facebook is proving to be more difficult than I thought it would be. Instant gratification has spoiled me.

The Girl and I went to Isabella’s IEP (Individual Education Plan) meeting today. We are so pleased with Bell’s progress. Her teacher, therapists and team leader are all so professional AND loving. Bells did well in her previous school but this one is so much more detailed in their observations and plans. We are so blessed!

On Saturday, The Boy turns 21. Twenty-one! Where has the time gone. He is turning out to be a nice man. I wish him happiness and success. My baby.

My baby bro is coming up from Texas this weekend and I will get to hug him on Sunday! How can a year have gone by already!

I started a computer program with Isabella yesterday. It is called Starfall (www.starfall.com). Hopefully, it will begin her computer literacy and she will learn a thing or two! Her attention span seems to be increasing and I am thankful for that.

Sorry for the scattered way I am writing. Hopefully, once I get “back into the groove” MY attention span will increase!

Blessings, g

Tuesday, September 28, 2010

Women, Take Heed

In these waning days of September, the month dedicated to ovarian cancer awareness, I would be remiss to not mention the signs and symptoms of this silent killer:

Symptoms of Ovarian Cancer
Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.
The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.
Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
Pelvic or abdominal pain
Difficulty eating or feeling full quickly
Urinary symptoms (urgency or frequency)
Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.
Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.
Please visit OCNA for more information.

Taken from www.tealtoes.org

Saturday, September 11, 2010

Welcome to Holland

byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

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

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.

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

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

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

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, September 10, 2010

I Won't Forget

It was a beautiful day much like today. Temperature was around 70 and school had just started again after a long summer break. I had just finished an exercise video and was about to start the treadmill when I turned on the tv. Instead of the regular programming the station was showing a view of the World Trade Center which was expelling billowing, dark gray smoke.

I called Himself at work to see what the buzz was there since he was in the travel industry. They thought it was a small plane gone astray just as one did at the Empire State Building many years ago. While we were talking, a second plane went into the other Tower and I screamed, "OhmyGod! OhmyGod! OhmyGod! It was then we knew we were being attacked.

After hanging up with Himself, I tried to go on the treadmill. Was it shock? A need for normalcy or routine in my world which had just been turned upside down? I can't tell you but I remember that I couldn't stay on that machine but, instead, sat riveted to the television.

I called my sister and gave her office the lowdown. I called my parents, brother, friends and told those who hadn't heard yet to put on their tv's. What channel, they asked. Any channel.

Thinking about bioterrorism, I went to the nearest supermarket and bought twenty-two gallons of water and two gallons of bleach for purifying water. I then filled up my gas tank and told the Arab attendant to be careful. Next was a stop at my dd's home. She was a mess but I knew that her friends were on their way so I went to The Boy's school.

The Boy was in the lunch room and I explained to him and his friends what was happening as calmly as possible. They didn't seem spooked so I asked my boy if he wanted to stay in school and be brave for his friends. He said yes. As I was leaving, I stopped in at the nurse's office. I told her I didn't know what was the right thing to do. She told me that, yes, I did know. I immediately went back to the lunch room and took my son home.

Himself was not permitted to leave work until three that afternoon. We had to turn off the television despite the fact that I didn't want to. It just wasn't good for our boy to watch this over and over again.

Living close to a very busy airport we are quite used to hearing planes going overhead at any time of the day. One of the most eerie parts of that day was the silence of commuter jet traffic and the roar of military jets and the pulsing of helicopter rotors which occasionally swept by.

We had no idea what was to come next. All we knew was that we were together, God was and is alive and well and that His eye was/is on us.

Truth be told, I don't remember much else about that day. I was helping to care for a friend who was dying of cancer and had to compartmentalize everything to be able to cope. In the following months, I became anorexic (not for the first time), my son graduated from sixth grade, my dear friend died and I went into an eating disorders facility for three weeks to keep from dying myself. However, on September 11, 2002, the trauma hit me big time. I kept expecting the same thing to happen. It didn't, thankfully, but the PTSD Alien Hunter speaks of was and, I believe, is still rampant in these here parts.

On this fifth anniversay, I sit here and wonder when the next attack will occur and if it will happen in the same places. Could my son cope with watching a site in NYC smoking and burning for two months again? I don't care what your political leanings are but I believe this administration has strengthened our security greatly. Our borders are still porous and that is a problem we need to deal with. Whether or not we belong in Iraq will not be discussed on this site and I will immediately delete any posts referring to it.

One of my greatest fears is that we, as a nation, have become complacent. Yes, we have to get on with our lives. However, there are people who complain about taking off their shoes before hopping on a plane and many who no longer fly their flags like we did five years ago. The taxis in NYC are honking their horns loudly again unlike the control they showed for what I believe was months after 9/11.

One good change has remained, though. We say, "I love you," much more freely than we did five years ago. We are much more aware of how fragile and finite our lives are. This is a very good thing.

Monday, August 23, 2010

What About the Innocents?

Anyone who knows me knows that I would not be a fan of Ms. Huffington. However, she did run an article that needs to be first page news in every publication around the country and maybe around the world.

Are you willing to take a few minutes to comment on the Huffington Post web site in order to bring to light the abuse happening to our children who have no voice? Please visit and speak up for our innocents: http://www.huffingtonpost.com/kim-stagliano/post_701_b_685954.html

Thank y0u, gail

Monday, August 9, 2010

Nearly Spoonless

Conditions this summer have left me nearly spoonless (please see last entry for explanation) for blogging. It has been a hot, humid season and I have had to care for Isabella much more than planned.

As I sit here typing, my bed is calling out to me to take a nap. Himself is out with The Boy and Bells is watching Cinderella for maybe the fifteenth time in a month so I have no option but to stay awake.

Life has been challenging but we are muddling through. God's mercy is evident in that we still have a roof over our heads, food in our bellies and clothing on our backs.

Thinking about the souls I have met here brings a warm feeling to my heart. Do you know that when you come to mind I try to remember to pray for you?

For dear J whose health has been a trial and is awaiting treatment.
For wonderful R who is going to school and taking care of home and hearth whilst battling her own health issues.
For T across the pond who never fails to bring a smile to my face.
For G who lives with some of the same challenges on the "spectrum" that we live with.
B, the survivor whose mom is battling a devastating illness.
Irrepressible 'r as he continues to labor in the Lord's army.
C, a proud professional working to bring justice to a system that is failing. My beloved adopted child W, who has a spirit of adventure and love.
My adopted son, R, working too hard but trying to balance his life with a little fun.
D who keeps me laughing as she lives her life loving her hubby, daughters, grandkids and many pets, hopefully in that order. L who is growing in her faith as she takes the bull by the horns and gets her house, literal and figurative, in order!
CL working away and keeping her mama safe and happy as they both serve Him faithfully.
Optimistic A who kept me riveted with her stories leading up to her wedding and pregnancy.
L, my dear sister separated from birth, sharing her beautiful photography and life on a ranch.
D, another sister who showed me how one little tree can tell a story.
J, persevering no matter what life throws her way and convincing me that I just might have some beauty in me!
R, working to fight a government he finds tyranical.
A, a man who fights his anger and protects his family.
L, a man of God who preaches truth unashamedly.
A, waiting to go home after faithfully following her hubby.
S, another mom gone back to school as she inspires me to think about running again.
C, wonder woman, building her body as she nurtures her boys!
S, the chronicler, traveling and dancing as she keeps her girls and honey supplied with gourmet meals.
L, the hipster, whose are hangs in my home.
A, a sweet mom having fun with her girls, taking pictures to chronicle their antics.
M, another sister separated from birth living far away from me where she teaches and grows her family taking them on wonderful adventures!
J, who is hardly around but can get me to chuckle no matter what.
D, a fellow gram who loves her challenged grandchild so much it hurt and who supports her daughter no matter what.
S, across the pond, too, another gram who has the heart of a poet.

I know there are more and I hope you will forgive me if I have left you out. The Holy Spirit knows and sends prayers for all for me.

Much love, g

How could I forget my partner in crime, J! We've never met but we have so much in common including fms.

Thursday, July 8, 2010

The Spoon Theory

This was sent to me via email and really hits the nail on the head. Just because a person doesn't show overt symptoms dosn't mean they aren't hurting. Let me know what you think.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino

Thursday, June 24, 2010

What a Difference Four Years Makes

Yippers; I have been blogging for four years now. Seems longer somehow.

Four years ago I was still in my 40's and maybe twenty pounds thinner, Isabella wasn't yet a year old and the Boy was still in high school.

We have been through rehab, an autism diagnosis and numerous dramas with our children til I thought I would scream.

We have been through numerous medical emergencies with Himself's parents and lost one of them just a couple of months ago.

We almost lost our house.

We have given and received love from all four of our parents, our children and our wonderful grandchild.

We have seen a little girl who screamed and spoke gibberish become a pretty well behaved child who speaks fairly well and is the happiest person we know. Progress has been fairly steady (not so common in our world of ASD's) and we anticipate even greater things.

We have seen our son keep a job for nearly two years with a company that is Fortune 1oo for best places to work.

I have gained freedom from demons in my life that held me captive since childhood and recognize that God loves me beyond anything I can imagine.

I have met, in person and by phone, several of my blogging buddies and been blessed by them.

We didn't lose our house.

God is good.

Thanks for sticking by me.

Saturday, May 29, 2010

Success is Sweet

The Walk for Autism Speaks was a resounding success. Over 4000 people showed up and we are nearing the monetary goal set by our chapter. I was so proud of our team. Two people didn't show up for our team due to illness but two other adults and two children took their place unexpectedly!

Recently, I read that, in the future not so distant future, autism will be the health care issue to be more concerned about than elder care when it comes to finances. It's reported that every 20 minutes another child is diagnosed. Sounds like a pandemic to me because the autism rates are consistent around the world.

Himself and his fellow behavior detection officers at the airport were given training having to do with recognizing autistic behavior as opposed to someone just being obnoxious or mentally unstable, e.g. someone exhibiting echolalia. This type of training is taking place in police departments in some areas, too. It is wonderful to see!

Isabella looks at me and asks, "Do you love me?" Where that came from I will never know. I'll bet you know the answer! She is my heart.

Thank you for caring so much, dear ones. Bless you all.

Saturday, May 22, 2010

A Walk in the Park

Tomorrow, we walk 1.3 miles to cap off a time of fundraising. My team and I have collected over two thousand dollars for the organization Autism Speaks which raises awareness, funds research and assists families in this "club" we belong to.

Did we choose autism? No. Do we want a cure? I do, some don't. We have a wonderful child in our lives who just happens to have autism. She sometimes makes gains in her journey bringing her more and more into this world and we see our girl's inner self emerge more. She is fun and happy and a joy in our lives.

Other families have no idea if their children are happy or if they know love. They seem to be far, far away in another world. It is for these children and for their loved ones, as much if not more than for our own, that we collect and walk and pray.

When autism speaks, are we able to listen? Sometimes only with our hearts.

Thursday, May 13, 2010

New Routine?

Being someone who doesn't like change all that much, the fact that I have been thinking that I need a change in routine is a bit odd. It's not that my life isn't fulfilling because it is. It would be nice, though, to have some choices.

One choice I would make would be to be fibromyalgia free for a while. Usually, I don't even notice the pain I live with daily. It is just part of my life and I accept it. However, when I have a night like last night, where the pain woke me so often, well, it would be nice to sleep uninterrupted. Also, I would like to be able to make plans without having alternatives planned just in case the fms flares up.

Another choice would be to have the concentration to go back to school or hold down a job. FMS works havoc on one's concentration. Just the thought of going back to work causes anxiety deep within me.

I know that every school day I need to be available to pick up Isabella at 2:30. Do I have a choice in this? I could refuse but who would do it? Today, it would have been lovely to take a nap to make up for last night's lost sleep. Yet, here I sit, with The Little Mermaid on for the fifth time in three days.

A friend recently wondered out loud what her life would have been like had she taken the path she originally planned. We won't ever find out, will we? This is not the life I planned either. However, we are where we are and can either dwell on the past in times of doubt or press on and make the best of where our choices have led us.

Sometimes overwhelmed but always blessed. I suppose that sums up my life right now. That's not too bad, right?

Thursday, April 22, 2010


Outside my window...the beauty of spring assaults my senses.

I am thinking... how can such beauty be such a thorn to my existence (allergies)
I am thankful for...the fisherman who caught the dinner we just ate.

I am wearing...my uniform of jeans.

I am remembering...the music of my youth.
I am going...to try to have dinner ready for three o'clock daily.
I am currently reading...the latest Robert Crais novel.
I am hoping...to use my restaurant discount tickets soon.
On my mind...the mistakes my children make.
Noticing that...Bells has such a great vocabulary now!

Pondering these words..."Two things I ask of you, O Lord; do not refuse me before I die: Keep falsehood and lies far from me; give me neither poverty nor riches, but give me only my daily bread. Otherwise, I may have too much and disown you and say "Who is the Lord?' Or I may become poor and steal, and so dishonor the name of my God."
From the kitchen...freshly caught striped bass, leftover rice and beans and a green salad.
Around the house...the little one eating her pasta, Himself on the computer and the breeze through the open windows.
One of my favorite things...going to visit my niece and her babies while she cuts and colors my friend's and my hair!

What's in your daybook today?

Tuesday, April 13, 2010

Television: Liberator, Captor or Time Vampire

The dvr (digital video recorder) is a blessing and a bane. Before we had one, we missed shows
because they were on at the same time another favorite show was on or because it was on too
late. We would hope to catch the missed show on summer reruns.

Now, we can record two shows at a time whilst watching a recorded show. Isabella's favorite
shows are always on tap and, I must admit, we do use them way too much. Let's blame it on
lack of energy to engage in more constructive activities.

Well, our dvr has been rather persnickety lately. Let's just say it makes watching
television "interesting." Therefore, we got a new one delivered and will be setting it up
tomorrow. Problem is we can't transfer the recorded shows to the new dvr so I stayed up way to late to watch my recorded programs!

I know that there is so much more I could be doing. Reading would be a great option.
Cleaning. Catching up on correspondence - yea, right. But here I sit fast forwarding
through commercials and seeing what Jack Bauer will do next to save the US of A.

What DO people with low energy do without tv? There are things I need to do for the Autism Speaks walk. It is more than a month away but will be here before I know it. I could be researching things to do with Isabella instead of letting her watch "Little Bear" until she can script whole shows.

My house hasn't had a good dusting in so long that I could probably sculpt small, furry creatures on any flat surface. Maybe I exaggerate but I really need to do some deep cleaning. Exercise. Oh, how I need exercise.

Truth is, tv is my down time. All day long I try to keep up with what needs to be done. So much doesn't get done because of my low energy but we keep it together somehow. I keep up with the latest announcements from Autism Speaks on facebook and read blogs written by people living with autism. One is actually written by someone WITH autism. This is a form of education.

Maybe I will try to leave the tv off during the day. Tomorrow. Or maybe the next day.
Hope you are keeping busy in a way that keeps you smiling, g

Saturday, April 3, 2010

Our Guy Sal

I wrote this nearly four years ago and decided to rerun it as my father-in-law died today.

My Guy Sal
I am having trouble sleeping so I thought I would begin to tell you about some colorful people in my extended family starting with my father-in-law.

Sal is 91 years of age and was the first born of Italian immigrants. His mother had suffered several miscarriages before his birth and adopted a daughter. He was raised to be, as we call it in the greater NYC area, an IAP (Italian American Prince). He was followed by a brother a number of years later.

As a young man, he was a great athlete and a man about town. From what I hear, he left a trail of broken hearts. Then he met Helen whom he married seven months later. He owned a taxi and that was their only means of support.

With the cab business faltering, Sal was able to secure a job with Metromedia television as a cameraman. Remember Soupy Sales? On his show, he would talk to Uncle Sal -yup, that was my f-i-l. I believe many of the shows he was involved with were local to the NY area such as Sonny Fox, Wonderama, Sandy Becker, Bishop Sheen and Romper Room.

The show that all of you probably know, though, is The Honeymooners. He tells us stories of how Jackie Gleason never studied a script and the rest of the cast had to play off of his ad libbing!

Yankee fans, anyone? Yes, Sal was a cameraman for the live action of Yankee baseball and would, at times, be in the dug out (Joe DiMaggio was a jerk).

My favorite story was when Madeline Murray O'Hare was a guest on Bishop Sheen's live show. Remember her? The woman who took prayer out of school and started an atheist's society. Well, leave it to Sal. When she started spouting her anti-God rhetoric - I remind you this was live television - Sal started yelling, "You're gonna burn in hell!" He was rushed off the set and didn't lose his job because, well, those were different times. Besides, the bishop liked him.

Unfortunately, Sal had to do alot of shift work so he wasn't around for alot of his four children's day to day activities. However, they all love him and he loves them.

Eventually, Sal became a floor manager and then worked alone in the studio at night when things became automated. Helen convinced him to retire because she was afraid of his being alone.

Sal has had three major cancer surgeries (never needing chemo or radiation treatments), open heart surgery (the doctor never thought he would be alive the next day) and various other surgeries and conditions including mild Alzheimer's. God has blessed him with a miraculous ability to heal quickly. It takes two full years to recover from open heart and he recovered in nine months or so. I believe God gave him this ability to heal quickly to save my m-i-l from going insane!!

As he didn't have the time with his kids and grandkids to fully enjoy them, he dotes on his only greatgrandchild, my granddaughter, Isabella. We truly believe that one of the reasons he is alive today is because of that little girl. If he isn't with her, he is talking about her. He has to be the one to feed her her bottle. When we are leaving their house, he tells her how much he is going to miss her and tries to lay the guilt to get us to come back soon!

We haven't always gotten along but, after a big blow out between the two of us about seven years ago, he thinks I am the cat's meow. He is still a bit spoiled but has mellowed with age.

Yup, I love my father-in-law, Sal.

Blessings, g

Friday, April 2, 2010

Via Dolorosa


Down the Vía Dolorosa in Jerusalem that day
The soldiers tried to clear the narrow street
But the crowd pressed in to see
The Man condemned to die on Calvary
He was bleeding from a beating, there were stripes upon His back
And He wore a crown of thorns upon His head
And He bore with every step
The scorn of those who cried out for His death
Down the Vía Dolorosa called the way of suffering
Like a lamb came the Messiah, Christ the King,
But He chose to walk that road out of
His love for you and me.
Down the Via Dolorosa, all the way to Calvary.
Por la Vía Dolorosa, triste día en Jerusalém
Los soldados le abrían paso a Jesús.
Más la gente se acercaba,
Para ver al que llevaba aquella cruz.
Por la Vía Dolorosa, que es la via del dolor
Como oveja vino Cristo, Rey y Señor,
Y fue Él quien quiso ir por su amor por ti y por mí.
Por la Vía Dolorosa al Calvario y a morir.
The blood that would cleanse the souls of all men
Made its way through the heart of Jerusalem.
Down the Vía Dolorosa called the way of suffering
Like a lamb came the Messiah, Christ the King
But He chose to walk that road out of His love for you and me
Down the Vía Dolorosa, all the way to Calvary.

My God, My Brother, My King. Thank you Jesus for all you gave and still give.

Saturday, March 27, 2010

Back in the Saddle

I am going to do my best to get back into the swing of blogging. Other on line activities have taken me away from my first love and I long to type more than one sentence at a time!

Recently, we had the yearly IEP (Individual Education Plan) meeting at Isabella's school. It took a while for my daughter and me to understand that the system is taking away services while telling us how well Bells is doing. "Your child is doing well so we are going to reduce her time in school and take away her summer program." Huh? If it is working why change it? Bottom line, let's save money.

Budget cutting measures are made by people who aren't in the trenches. If they met these wonderful children would they be as quick to pull the rug out from under them? If they were to look into the eyes of the parents who are exhausted from the daily care of special needs children and from working full-time to put food on their tables could they justify the measures they are taking?

More and more I see the need for groups like Autism Speaks and P.O.A.C. which are on the front lines of defending the rights children on the autism spectrum. When I reached out, I was given information to help my daughter fight this I.E.P. and insist on getting Bells the services that are helping her to flourish.

On May 23rd, team Isabella will be walking for Autism Speaks. We hope to raise $1000 to help raise awareness of autism, education and research for a cure. If you wish to join us let me know! If you want to donate, great. What I ask for most is your support and encouragement for myself and any other families with members on the spectrum. Learn about autism. Reach out; give them a break if you are so inclined.

Awareness and education; our greatest weapons and our greatest defenses.

blessings from the trenches, gail

Friday, March 12, 2010


I had just about completed typing out an entry I had been working on in my head when it disappeared. I had even saved it to draft halfway through but it is gone!

When I get up the strength to rewrite it (my fibromyalgia has me sleeping a lot), I will share with you what is on my mind. In the meantime, thanks to The Simple Woman's Day Book for the following questions:


Outside my window...rain to bring out the crocuses, daffodils and tulips just waiting to erupt into spring song

I am thinking...that I hope I get a restful night's sleep so I can be a good overnight guest to our friends

I am thankful for...people from the autism family who reached out to me today when I expressed a problem with the school system Isabella is in.

From the kitchen...dishes washed, dishwasher emptied, floor needing washing

I am wearing...pajamas and fuzzy purple slipper socks

I am creating...a ruckus for the school system if they continue to try to take away services from my precious girl

I am going...to stay with friends at the shore just to get some couple time together

I am reading...my Bible - been too tired to start a new book

I am hoping...to get throught this bought of fms so I can get to work

I am hearing...a rumbling in this country that is going to destroy it and/or bring revival

Around the house...so much to do

One of my favorite things...a nice cup of decaf coffee when the mood strikesA few plans for the rest of the week: get moving!

Here is picture for thought I am sharing...Isn't this pretty?!
Have a wonderful weekend, all. You bless me. g

Saturday, February 6, 2010

Different, Not Less

As a rule, I don't cry. Well, maybe at the end of It's a Wonderful Life at the line, "To my big brother George; the richest man in town!"

However, tonight I cried like a baby. Himself and I watched the movie Temple Grandin on HBO. Claire Danes performance as the title character was brilliant.

Temple Grandin is a woman with autism. She didn't talk until she was four years old. Now in her early sixties, she graduated college, earned a Master's degree and has a PhD. She is a highly respected scientist and advocate for autism.

Why was I crying? Because the sky's the limit for my Isabella! She may never be a scientist or have a PhD but, although I have always had hope for her, this movie gave me even more. We don't know what is going on in Bells' mind; how she processes information. Hopefully, like Dr. Grandin, she will be able to tell us one day.

Don't give up! As Dr. Grandin said, people with autism are different, not less.

Thank you, HBO.

With faith and hope, g

Tuesday, February 2, 2010

A Dizzy Day Entry

Have a bit of vertigo so...

Thank you, Peggy.

FOR TODAY... from gail's Daybook

Outside my window...a chilly February day

I am thinking...I'm so glad I don't have nausea with this bout of vertigo I am experiencing!

I am thankful for...the little girl who is sitting beside me keeping me company

I am wearing...jeans, orange top

I am remembering...my room mate from one summer of college

I am going...to pick up something from a freecycler for my niece tomorrow if I can drive

I am currently reading...The Apostle by Brad Thor

I am hoping...to get a lot of sponsors for our Autism Speaks walk in May

On my mind...using the Lent timeline to do something about weight loss

Noticing that...I don't recognize myself in the mirror any more

Pondering these words..."I haven't a clue how my story will end, but that's alright. When you set out on a journey and night covers the road, that's when you discover the stars. Quote by Nancy Willard..(thank you, Lisa)

From the kitchen...a defrosted chicken and vegetables waiting to be made into soup which will have to wait until tomorrow

Around the house...clean laundry eveywhere needing to be put away

One of my favorite things~a little girl's warmth as she leans on me

I really want to keep up with my blog so, if it takes using something like the daybook, so be it.

Be well, g

Monday, January 25, 2010

Simple Woman's Day Journal

January 25
Simple Woman's Day Book
From blogspot.com

The Simple Woman's Daybook~January 25th Edition

Outside my window...a very wet day

I am thinking...the lie down I just had is doing me a lot of good
I am thankful for... my comforts

I am wearing... a brown 3/4 length sleeve top and blue denim jeans
I am remembering...my grade school years

I am going... to have my hair done tomorrow and play with my great niece and nephew

I am currently reading... back issues of my one magazine subscription

I am hoping... to see resolution to Isabella's school situation
On my mind... how to get some things off my mind

Noticing that...Bells answered my question about what she did in school today
Pondering these words..."whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable-if anything is excellent or praiseworthy- think about such things."
From the kitchen... a cold stove that needs my imagination and heating up

Around the house... attention is needed
One of my favorite things~ seeing progress in Isabella

Hoping you all have a wonderful week, g

Thursday, January 14, 2010

One Big Family

Isabella didn't want to go to school this morning. This is not a common occurrence so I played it down by not mentioning it for a while.

When it was time to get dressed, she fought me a bit as she loves her bathrobe and doesn't want to take it off. Slippers are big in her world, too. Once it was time to go, all was well with the world...

...until it was time to go into the classroom. Blessedly, the pre-school autism class has its own outside entrance. Bells stood there not going to go win. Her teacher said, "Don't you want to see your friend, L?" In she went!

Next, M didn't want to go in. "Don't you want to play with the train, M?" asked one of the wonderful aides. "Train!" he repeated as he ran into the classroom with a big smile on his face.

M's dad and I smiled broadly at how his son and my granddaughter responded so well. His son had barely any speech before he started school and Isabella had little discernible speech. We rejoice together in the progress of our beloved "special" ones.

The more I read the comments of parents and loved ones of people with autism the greater a bond I feel with them. No one else understands our hopes and fears; our heartbreak and joys; our feelings of failure and of triumph. It is a kinship.

I do believe that very few of us would refuse a cure for autism. Some might but I know I would jump at it if it wasn't dangerous to my Isabella. Would I love her more? How could I. Would I love her less? I don't believe that could ever happen.

I still laugh nearly every day I am with Bells. We are blessed that she is not inside of herself all of the time but able to take part in every day tasks such as "helping" me in the kitchen and picking up after herself.

What would my life be like without her? I don't ever want to find out. Thank you God for my little Boo.

Friday, January 8, 2010

Thankful Thursday

January 07
Thankful Thursday

In following dear Meg's example, here are things I am thankful for:

a roof over my head

clothing on my back

food in my belly

health in my family

progress in Isabella's cognition

cars running well

chocolate being healthy

parents being alive and well

God in me

Can you add to this?

Tuesday, January 5, 2010

Just Don't Know

Just don't know what to make of what has been going on around here. Wisdom and discernment are needed and I am waiting upon the Lord to guide me.

As I am sure I have mentioned in the past, being a parent lasts a lifetime. Doesn't matter what your child's age is you still are happy when they are happy and sad when they are sad.

I've been blessed to quite often be able to learn from other people's mistakes. Don't get me wrong; I have made some of the stupidest mistakes in the past. What I am saying is that, had people not kept their counsel before I jumped in I might not have taken the plunges that brought me such pain. Telling me afterwards did no good.

Now I find myself weighing my words with my children; especially my daughter. I do speak up but it falls on deaf ears - or so I think. So much unnecessary pain. It hurts me.

Having a grandchild changes how you act toward your grown child, too. Her welfare needs to come first and, if I don't think it is, I want to jump right in. Tact is much more difficult.

Ugh. I am so happy I have prayer to help me through. I don't think I'd be alive without my faith. I'm not all that strong without God's hand holding me up.

Have you ever felt like giving up and running away? Oh, yes. I am blessed that I have a couple of places to go overnight if I feel I am going to burst.

If you have a child or children and you knew then what you know now would you have still had them? I love my children so much. That being said, there is only one way to get grandchildren...

Do you realize that those "perfect" families you see all around you aren't? Perfect, that is. Took me a while but yes, I realize it. I have found that, after getting to know them, I am happy to come home to what I live with.

Are you sick of holiday sweets yet? Just when I think I am I get a yen...

In saying the new year, are you saying "twenty-ten" or 'two thousand ten?" I want to say the latter but am afraid of being lazy and saying the former. I have a keen sense of being appropriate. heavy sigh

Be well, gail