Gymnastics Class (May 5th - 26th)

Last month our little monkey's took an intro. to gymnastics class through the local parks and recreation. It was four fun Wednesday's where they got to tumble around and burn a bit of energy. This was their first non-parent participation class so it was a bit different sitting in the hallway verses helping them tumble like I have in past gymnastics classes. It was satisfying however to watch them take direction from someone other than myself. I have to say I was very impressed with how well they listened and behaved during that 45 minute class. I read somewhere that it's how your children behave out of your presence that you should be most concerned with.
They made me proud!

Jack's Preschool Open House (May 6th)

Jack had an immediate connection with his teacher, Mrs. Lance when he joined his new school earlier this year. She's been great with Jack and we are so thankful for how wonderfully she embraced him and our family.

His classroom was decorated in an ocean theme and was filled with seahorses, mermaids, scuba divers, fish of all colors, and many other sea life and treasures.

It was obvious that the kids had worked very hard decorating the room and Jack was very proud of himself and his classmates.

and away they go!

Benjamin finally got his own scooter - yeah!! Thank you Dad, a.k.a. Papa.

He's a natural and figured it out right away with very little instruction. These pictures and video were taken they day he got it (April 28th). You should see how good they both ride now - 2 months later. It's amazing the difference a little bit of practice makes.

Some Serious Kite Flying (April 5th)

Happy Father's Day Dad

WE LOVE YOU!

List of books worth checking out

List of books where people with disabilities are shown in a positive light

Here is a list of books for elementary school that have at least one character with a disability. All of the characters with disabilities are portrayed in a positive light.

There are characters who have autism, down syndrome, intellectual disabilities, visual impairments, hearing impairments, speech delays, dyslexia, spina bifida, synesthesia and who use a wheelchair. The list was created using the winners of the Dolly Gray Award and the Schneider Family Book Award and lists compiled by Sandy Lahmann, Cherl Pesto at Disaboom and Mary Anne Prater & Tina Taylor Dyches from Teaching Exceptional Children.

* Very Special Critter, Mercer Mayer–Little Critter discovers that the new boy in class is really not so different from anyone else, even though he is in a wheelchair.

* My Friend Isabelle, Eliza Woloson–A young boy the activities he shares with his friend Isabelle, a girl with Down Syndrome.

* Susan Laughs, Jeanne Willis /Tony Ross–Rhyming couplets describe a wide range of common emotions and activities experienced by a girl who uses a wheelchair.

* Harry and Willy and Carrothead, Judith Casely–Three boys overcome prejudicial ideas about appearances and become friends.

* Hooway for Wodney Wat, Helen Lester /Lynn Munsinger–Classmates make fun of Rodney because he can’t pronounce his name, but it is Rodney’s speech impediment that drives away the class bully.

* Dad and Me in the Morning, Patricia Lakin–A deaf boy and his father share a special time as they watch the sun rise at the beach.

* Best Friend on Wheels, Debra Shirley–The narrator meets Sarah, a girl in a wheelchair, and they become fast friends.

* Kami and the Yaks, Andrea Stenn Stryer–Kami, a young Sherpa boy who is deaf, rescues his family?s yaks and livelihood during a violent storm.

* The Deaf Musicians, Pete Seeger /Paul Dubois Jacobs–After losing his hearing, jazzman Lee learns to make music in a new way.

* Looking out for Sarah, Glenna Lang–Describes a day in the life of a seeing eye dog, from going with his owner to the grocery store and post office, to visiting a class of school children, and playing ball

* Piano Starts Here: The Young Art Tatum, Robert A. Parker–Tatum came from modest beginnings and was nearly blind, his passion for the piano and his acute memory for any sound drove him to become a virtuoso who was revered by both classical and jazz pianists.

* Alphabet War, Diane Burton Robb–Learning to read is a great struggle for Adam, but with expert help, hard work, and belief in himself, he wins “The Alphabet War.

* See the Ocean, Estelle Condra–Driving through mountain fog to the beach, two young brothers compete to see who will first see the ocean, but it is their blind sister Nellie who senses it first.

* Knots on a Counting Rope by Bill Martin Jr./John Archambault–A grandfather and his blind grandson reminisce about the young boy’s birth, his first horse, and an exciting horse race.

* Thank You, Mr. Falker, Patricia Polacco–Trisha could paint and draw beautifully, but when she looked at words on a page, all she could see was jumble. It took a very special teacher to recognize little Trisha’s dyslexia.

* Mama Zooms, Jane Cowen-Fletcher–A boy’s wonderful mama takes him zooming everywhere with her, because her wheelchair is a zooming machine.

* My Pal, Victor / Mi amigo V?or by Diane Gonzales Bertrand –Two boys enjoy the summer doing all of the things that boys do despite one boy’sdisability.

* Two Tracks in the Snow, Louella Bryant–Ari, a boy who uses a wheelchair, uses his monoski to teach Will how to snowboard.

* Silent Lotus, Jeanne M. Lee–Although she cannot speak or hear, Lotus trains as a Khmer court dancer and becomes eloquent in dancing out the legends of the gods.

* Crow Boy, Taro Yashima–A lonely boy in a village school in Japan learned all the calls of the crows as he left his home at dawn and arrived home at sunset on school day.

* Ian’s Walk, Laurie Lear–A young girl realizes how much she cares for her autistic brother Ian when he gets lost at the park.

* Featherless (Desplumado), Juan Felipe Herrera–Although Tomasito’s spina bifida keeps him in a wheelchair, where he often feels as confined as his flightless and featherless pet bird, he discovers that he can feel free when he is on the soccer field.

* Keeping Up with Roo, Dan Andresen/Sharlee Glenn –Gracie has always had a special bond with her Aunt Roo, who is mentally disabled, but that relationship starts to change when Gracie beginsschool.

* Dad, Jackie, and Me, Myron Uhlberg-A young boy shares the excitement of Jackie Robinson’s rookie season with his deaf father.

Click HERE for the link to the original article

Defining Moments

There are moments in life that really make you realize how much your children are changing and how quickly they are growing up. I had one of "those" moments last month when Jack and I went to the dentist together. I hadn't realized when I booked the appointments that he and I would be seen simultaneously verses one right after another like we always had before. This time he and I sat in separate rooms both getting our teeth cleaned and x-rayed at the same time. I could hear him talking with and answering the hygienists questions. He sounded like such a big boy. It was an odd feeling not to be sitting right there with him, assuring him that everything would be fine. At times, I felt the urge to help him answer questions directed toward him, but I didn't and ultimately he didn't need my help. He was very polite and respectful and I was truly proud of how he handled himself.

My first born, my Jack, my sweet 5 year old boy is growing up.

The following day (May 11th), I took Benjamin to his very first dentist appointment. At this appointment Benjamin and I had a few defining moments together as well. Benjamin is 3, but most days acts older, more like his 5 year old brother. Not that he doesn't throw typical 3 year old tantrums - he does (trust me). However, Benjamin is athletic, well spoken and a relatively good eater so I sometimes forget the age difference between the boys.

As we were waiting in the lobby to be called, Benjamin looked at me and said "mommy, I want to leave. I"m scared and don't want to see the dentist" His face told me that he was genuinely scared and REALLY did not want to do this. At that moment he looked very much the 3 year old that he is and my heart hurt for him. I was disappointed in myself for not preparing him more or even realizing that he might be afraid. I held him on my lap and assured him that it would all be ok - and it was. Look at this scared little face.

Benjamin did an awesome job!
He opened up wide, he didn't bite her (thank goodness) and was just super polite.
I was very proud of him for sharing with me about his fears and for facing them so gracefully. I treated both boys to ice cream later in the day to show them how proud I was.

See you in 6 months Dr. Wathen!

Benjamin the Bus Driver

If you get the chance to visit the Children's Museum at La Habra don't forget to pick up one of their brochures - you might just see someone you know.



Someone from their corporate office saw this picture of Benjamin on our blog and asked if they could use it in some museum literature. Of course I said yes, but had no idea he would be on the cover of their main brochure. It was pretty exciting to walk in to the museum and see his adorable picture staring right at us. Jack kept saying "Benjamin you are famous!" Benjamin felt super special.

Father's Day Fun!

This ad is currently running on the Lakeshore website

Photo shoots at Lakeshore are always so much fun! This little (big) guy sure loves promoting his Dad's work. Yes, if you were wondering that is Branden's hat, tie and sweater. He even had on Branden's shoes but they were cropped out. Speaking of being cropped out - Benjamin was actually in the shot as well but was cut out. It's an adorable picture and I will post it after the Father's Day promotion is over. We have chosen to NOT tell Benjamin he didn't make the ad :-) DIdn't really see a need to make him sad. Let's just see how long Jack can keep it to himself.

I hope you did too

New family photo

Did you see it at the top of the page? What do you think? Who's the photographer you ask?

Well, it's our good friend Cielo Roth. Cielo is currently in the process of updating her photography website after taking some time off to be a full time mom to her two beautiful daughters. So can you guess how excited I was when she asked if we might be interested in a complementary photo session. It took me about a half of a second to answer - YES!

We met up with her at Wardlow park in Long Beach on May 1st and she snapped away. The boys were being super crazy and how she managed to keep her sense of humor was beyond me. She was a true professional and made it really fun for all of us. This was our first official family picture since Annabelle was born and I am very thankful for it. Here are a few of our favorites. Outside of the fact that I am almost 20 lbs over weight (ugh!) and have some seriously flat hair I think they came out really good.

Thank you again Cielo for capturing our families smiles!

*Can you believe that we have been together almost 21 years - wow!!

Chapel

Jack's preschool has a monthly chapel visit where the school director leads the kids through a few bible verses, they sing some songs and then get an opportunity to participate. Jack's class was going to be singing a song so I arranged to attend. It was short but sweet.

Jack was invited to come up and help light the candle. He was very proud.

Mrs. Tuscany read to them about Jesus and why we celebrate Easter.

She then proceeded to explain Easter by using a felt board and making sure to use words the children could really understand. *sadly, my camera was really struggling in the low light of the chapel.

Here is Jack's class singing their Easter song.

April 3rd

Jelly Beans

I like to leave "things" i.e. worksheets, coloring sheets, etc. on the kitchen table at night so that the boys have something new and fun to do when they wake up in the morning. I left this jelly bean number/coloring match worksheet a few weeks ago (well, actually in March) and I was so impressed with how well Jack did with absolutely no adult instruction. That night we colored around the word with the corresponding color which was next to the number inside the jelly bean (does that make sense?). This was the first time I had given him one like this and well as you can see he had no trouble at all. It was actually complete by the time I got out of the shower. He was VERY proud of himself.

It really wouldn't have been any big deal at all if he wasn't able to figure it out, but I have to admit that I was pretty happy that he was able to. Jack is starting kindergarten in a few months and with the proposed shortened day (8-11:20) and the increased class size (from 20 to 30 kids) we worry a bit about the learning environment. We know that we as parents will need to fill in where his school is falling short and thankfully I am confident that I/we can do it. However, it does ease my heart knowing that he is entering school with some good skills.

Okay, I'm done bragging, but what's a family blog for if not to brag about your kids a little :-)

I just realized

that the last official family post with pictures was from St. Patrick's Day. What in the world? That was mid-March. How do I let myself get so behind?

The kids are doing so well and getting so big. I've got great video of the boys riding scooters and their new skaetboards. Adorable video of Annabelle playing peek-a-boo.

I so wish there were more hours each day to get things done. Oh well, at least we are having great moments and that I am capturing some of it with the camera. Especially since this memory of mine is starting to fade.

Can you believe it's almost June? Where did the year go?

National Health Reform Delivers New Protections for Individuals with Spina Bifida

On Tuesday, March 23, President Barack Obama signed into law the Patient Protection and Affordable Care Act (PPACA, Public Law 111-148), a massive overhaul of the country’s health insurance system that will extend coverage to more than 30 million Americans and dramatically affect how health insurers and plans treat the people to whom they provide coverage. Spina Bifida Association (SBA), collaborating with its partners in the National Health Council, worked for years to ensure that national health reform specifically addressed the needs of individuals living with disabling, chronic, and/or life-threatening conditions, including the estimated 166,000 individuals across the country who live with Spina Bifida. SBA is thrilled that the final bill contains numerous provisions that we have long-advocated have become the law-of-the-land, including specific protections for people with pre-existing conditions.

By the end of this June, high-risk insurance pools will be created to make insurance available to individuals with pre-existing health conditions. By mid-September of this year, insurers will no longer be able to exclude children with pre-existing conditions from coverage under their parents’ insurance, children will be able to stay covered under their parents’ insurance plan through age 26, and lifetime limits on insurance benefits will be prohibited. By the time the law is fully in effect in 2014, health insurers will no longer be able to refuse to sell or renew policies because of an individual's health status – including current medical conditions or health history, genetic information, disability, or other health information – or to exclude coverage for an individual of any age with a pre-existing condition. Insurers will not be able to charge higher rates because of an individual’s heath status or gender, and they will be prohibited from imposing any annual limits on coverage. To learn more about specific patient protections for people with disabilities and chronic conditions please read Health Care Reform: Twelve Key Changes for Americans with Chronic Diseases (PDF)

The health reform bill also contains new programs and funding to support individuals living with disabilities and chronic conditions and makes critical new investments through a Prevention and Public Health Investment Fund focused on improving and protecting the nation’s health through community-based efforts. Also, a new interagency council will be formed to establish a national prevention and health promotion strategy. In addition, the new law increases Medicaid payments for primary care physicians (pediatricians, family physicians, and internists) starting in 2013, raising rates to Medicare levels by 2014; this change should help increase access to health care providers for individuals in the Medicaid program.

These critical changes are cause for celebration, as they should improve the lives of people with Spina Bifida and help promote and protect the public health. However, these new protections do not mark the end of our advocacy efforts; enactment of this law is just the first step in what will be a very long implementation process. Federal agencies will be tasked with putting the provisions of this law into action, and Congress likely will make adjustments in the months and years ahead. SBA will be closely monitoring the law’s implementation and tracking the development of the new programs to ensure that the needs of individuals with disabilities are addressed, and that folic acid awareness and education efforts are incorporated wherever appropriate and necessary. Moreover, SBA will continue to seek annual increased funding for the National Spina Bifida Program continues; the need for advocacy in Congress remains, as each year federal elected officials determine funding levels for Spina Bifida-related initiatives such as research, quality of life programs, and the National Spina Bifida Patient Registry. To learn more about SBA’s advocacy efforts, visit SBA's Advocacy and Public Policy Priorities section.

Here's a link to this article online

Latest update on Brent (Saturday)

After you read Ed's update below you will see why I am SO very proud of my sister. We are so glad that Brent is once again home with his family to continue his recovery. Thank you for all of the prayers and well wishes for him - it means so much to us.

Hello everyone

It is our hope that this update finds you all doing well in your lives. Our family is doing much better now that our Brent is home again. The doctors confirmed and identified the infection that caused his headache and sickness on Mothers day.

A nurse came to the house today to teach Mingie and I how to give Brent his meds. The antibiotics are given through a PIC line in Brents arm, one medication is given as a shot twice a day and others by mouth. He will be evaluated each week concerning the infection. Brent is happy to be home and continues to have a very positive attitude about everything. He will continue therapy starting next week and is determined to work hard and do well. Its so good to have him home!

Please pray for my sweet Mingie as the new plan for home care is pretty over whelming, but as ALWAYS she is and will again rise to the occasion and do what she has to do to care for our children. I was afraid she was going to pass out today when she had to give B his first shot, but she handled it very well! I am very proud of her!

Thank you to ALL of you planning the fundraiser at Peppinos. It is shaping up to be a terrific evening. We are very grateful to you ALL. Are there any rules against our Family bidding on the silent auction? LOL The items are VERY COOL. Mingie and I will plan on attending and Keith and Amanda will care for Brent. Hope everyone has a nice weekend and hope to see you ALL soon.

God Bless you ALL

Love always,

The Sirignano Family

An evening of learning

I'm so happy that I was able to make it to the Staying Present with your child seminar tonight. It was such an uplifting and encouraging evening. It really is such a pleasure to be with like-minded mothers sharing stories and supporting one another.

Thank you Branden for bathing and putting all 3 kids to bed - I love you!

This poem was printed on the back of our handout and it touched my heart so I thought I would share it here. Wishing each of you a wonderful weekend with your families.

If I Had My Child to Raise Over Again
by Diane Loomans

If I had my child to raise all over again,
I'd build self esteem first, and the house later.
I'd fingerpaint more, and point the finger less.
I would do less correcting and more connecting.
I'd take my eyes off my watch, and watch with my eyes.
I would care to know less and know to care more.
I'd take more hikes and fly more kites.
I'd stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I'd do more hugging and less tugging.
I'd see the oak tree in the acorn more often.
I would be firm less often, and affirm much more.
I'd model less about the love of power,
And more about the power of love.

What a blessing my babies are! Tomorrow is going to be a great day!

My nephew is back in the hospital

Here's the latest update on Brent.

On Sunday morning Brent was taken to Mission hospital after complaining of a headache and then vomiting several times. He was admitted immediately and during the course of the day was cared for and had several tests, a CT scan and later an MRI. Through these images, doctors detected fluid on the right side of the brain and yesterday Brent had surgery to evacuate this fluid. The surgery went well, however the fluid turns out to be an infection and now Brent will be treated with antibiotics for about 6 weeks and will remain in the hosp probably for about a week, The doctors will analyze the infectious materials and determine the best medication to treat Brent. He is once again in the care of the amazing team at CHOC in Mission hospital,

Please pray for God to guide Brents doctors in determining the best medicine to treat Brent and that he can be free of infection. Please pray for Brent to remain strong in his faith and to continue his positive attitude towards recovery. Thank you so much for your prayers!!

God Bless ALL of you

Love Always

Ed and Mingie oxox

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Thank you

Thank you to those that prayed for me and my family during this past week.

Thank you to those that sent me personal e-mails or notes through my blog and Facebook.
Thank you to those that encouraged me when I started to get crazy nervous about reading at the funeral.
You are all wonderful and thoughtful people and I feel so blessed to be surrounded by such kindness.

The rosary and funeral service for my Grandmother a.k.a. Wella to many was beautiful.
Thank you to those that came and to those that helped and offered to help.
Our boys were wonderful. Just like little men - strong and loving.

I am thankful for the many wonderful years I had with her and all that she taught me.
My sadness has subsided and has been replaced with peace in my heart.

If you are able, I encourage you to give your Grandmothers an extra hug and kiss this Mother's Day.

You will be missed

It's been a week now since my Wella went to be with the Lord.
I know she is resting comfortably now and I am thankful for that, but I"m still sad.
I'm sad that I no longer have her with me.
I am sad that I can't share stories with her or hold her hand anymore.
I am sad that she will not get to know and love my sweet Annabelle.

She was a good woman with a strong love for her family.
She absolutely adored the boys. She loved all of her grandchildren and great grandchildren. Family was important to her.

She taught me so much and shared so much of herself with me without ever asking for anything in return.
I will cherish every memory I have of her.

My dear Wella, I know that you are dancing in heaven with Papa.
Please know that you will be forever missed but never forgotten.

I love you very much!