A Year Ago We Arrived Home from Ukraine

A year ago, Nina and I arrived home from Ukraine. The journey was long, and we had been stranded in the Ukrainian airport for 2 days. Stranded in Frankfurt for one day. We were tired, exhausted, and I was an emotional wreck.

The flight from Chicago to Minnesota was short, as soon as you take off it feels like you are landing. Nina had finally fallen asleep in my arms, and I held her close to me.

The pilot announced, "We will be landing int he Minneapolis International Airport in about 15 minutes."

They came slow, but they came with force. Tears began spilling, and soon I was crying out loud, sobbing, shaking uncontrollably. The plane was small, and as my sobs became louder, the plane became quite. I could hear myself sobbing, the lady across the isle glancing at me wondering if she should come over and offer a friendly word. There was no thought of embarrassment. I was finally coming home! It was a long and hard journey. We were finally coming home!

A man waited for us at the gate with a wheelchair for Nina. I propped her down, still sleeping, wrapped in my coat. "please get me out of here as quickly as you can" I pleaded with the airport man. He did, and I was thankful. As soon as the door opened to the baggage claim section (where you finally exit security) I began frantically searching for Andy. As soon as I spotted him, holding Nichole, and Ellie by his side, I began running. Yes, I was the crazy woman, flailing my arms like a crazy octopus. Some hands pushing people out of my way, the others ready to embrace my family. "Andy!" Ellie came running first, and I hugged her tight. Then I fell into Andy's arms and I lost it once again.

I have no idea what the man pushing Nina was thinking, but he was there when I turned to look.







A year has gone by, and what a difference a year makes!
Here are some links of our long journey home:
The Journey Home: Kiev Airport
The Journey Home: Frankfurt, Chicago, and Minnesota
The Journey Home: Reunited 


The zookeeper























I haven't asked Ben what he wants 'to be' when he grows up for years. But a story in the new BLOOM magazine woke me up. It's an interview with author Amy Baskin about the dearth of possibilities for young adults with developmental disabilities. When they age out of high school at 21, they're not qualified to do anything, nor are they entitled to any ongoing education or daily activity. There are limited traditional options, like sheltered workshops where participants make 40 cents per hour. Or they can sit at home and watch TV all day. But if you want your adult child to have a meaningful life -- something that speaks to their passions and dreams -- you have to create it for them.

So after all these years, I asked Ben again: "Where would you like to work when you're older? Where would you like to have a job?"

"The zoo," he signed.

"What would you do there?"

"Feed the animals."

My son fancies himself a zookeeper, throwing silvery fish and corn husks to the polar bears.

I fell into a terrible funk this afternoon as we walked around the pavilions at the Metro Toronto Zoo, spread over miles, recognizing that this dream is not practical for a child who can only hobble along for a few minutes at a time. He sat in his wheelchair with his face close to the glass, watching the zookeeper on her elevated platform lob lunch to the lumbering bears with dirty coats. "When can I feed them?" he signed.

I asked the zookeeper if visitors were ever allowed to throw the food. No, she said. The animals receive limited portions that couldn't be divvied up among the hundreds of children who would line up.

Ben stretched out his hand to shake hers.

"How do you become a zookeeper?" I asked.

"They look for people with a biology background," she said.

I wasn't sure if "they" were universities recruiting people into their zoology programs or zoos themselves.

I googled "How to become a zookeeper" and found this interesting piece by someone from the Jacksonville Zoo. They have about 100 applications for every spot, it says. Interestingly, the minimum requirement is a high-school degree (which Ben won't get). The HR person says the best way to get your foot in the door is to volunteer at a zoo and get as much experience as possible with a variety of animals.

I searched our Toronto Zoo for volunteer opportunities but the website states that volunteers "have no direct contact with animals or plants (I did touch some enormous fuzzy leaves today on a tree in an exhibit that mimics the Indonesian rainforest!)."

This weekend, one of my daughters was asked to look in on a hamster who's going solo at a neighbour's house. "That's the perfect job for Ben!" I told my husband. Ben doesn't have the strength to walk a dog or lift a big bag of pet food, but hamster food can't be heavy. However, when I asked if Ben could feed the hamster, my daughter was nonplussed.

I'll have to put the word out that Ben is looking for odd jobs.

I wrote an article years ago about a single dad who was pounding the pavement looking for job opportunities for his teenage son who had Down syndrome. I didn't realize at the time that I would eventually wear his shoes.

I'm in a parenting marathon that has only just begun. But I already feel burnt out.

How do you pace yourself and keep your spirits up?

Happy New Year!

Poor Visibility and Driving Conditions (Mess on I-94)

You know that it might be a hard travel when you hear "Poor visibility and driving conditions. Drive carefully" But really, would you be expecting this?

The 2 pictures above were taken at 10:07 am on I-94 this morning. North Dakota, coming from Bismarck to Fargo. They might seem like the same to you, but they are not. Really, after all day driving through this, they seem are different. In the second picture, the road was "clearing up" a little. Yeah sure, laugh. Yeah, right now, laugh at the minor difference in the picture. I am laughing too. No, really, I am! Because I agree, there is no much clearing up going on, but boy did we love it when the road looked like the second picture for a few seconds. Yeah, you read that right, seconds.

At 10:09 am, we were back on as you can see.
 This following picture was taken at 10:20 am. Now that was a good road! Oh and it lasted...well, a few more seconds! Yeah! Sure you can cheer! You can say, "I am so glad that Andy and Ellen did not have to travel in that treacherous weather all morning/afternoon, and they got  a little break for a somewhat clear road for...well..." let me finish that sentence for you, it was a few longer seconds. Yeah seconds. But do notice, I said longer seconds. It was longer, I promise.

(Sure, you can see ahead that we are about to hit the "brick" or snow once again)

For the next couple of pictures taken at 1:11 pm, please keep in mind that I did not "accidentally" post blank pictures. No really, there is a road in there. No really, I promise. You don't think so? Really, take a closer look. Click on the pictures and enlarge if you need to, but that is a road, it is I-94.

Oh but don't worry, it cleared up afterwards.
Now, this picture makes the road look "nice" compared to the previous ones, doesn't it? Except...wait a second... yeah, that is right, it looked better compared to the previous pictures, but really, is this any better?
 Just a minute later, and still look at that mess.
I-94 was closed due to weather and visibility of up to "zero." Oh really? We thought it was about a "one."
Okay sure, we were on the road, what were we thinking? Just trying to get back home, and there was no pulling over, now that would have been dangerous. With no visibility, the last thing you want to do is be at the side of the road where nobody can see you until they hit you.

We were not going to push it anymore, our plan was to stay in Fargo and stay for the day. When we were only 10 miles away from Fargo (we estimated it would have taken us about 45 minutes to an hour because of how slow we had to go) we were detoured. Turns out there was a bad accident just ahead of us where they estimate over 100 cars were involved. Oh I know, I am given to exaggeration, I know. However, this is no exaggeration. When you are driving 15 miles an hour (sometimes less, sometimes a whooping 25 on the good stretches) when you have limited visibility, and I forgot to mention the road is pure ice, well, one time you see snow, the next there is a car and when you  brake you slide, you hit the car ahead of you. And then since not one person can see more than 10 feet ahead, well...the cars pile up...quickly. And we barley missed being sent away, I bet there were only about 15 cars ahead of us that made it to the detour as well.

The detour...it was BAD. And God saved us from what could have been a bad accident as we slid off the road. I do call it a miracle as we slid into the on-coming traffic lane, avoiding a collision in front of us of about 4 or 5 cars, and we slid back into our lane following a large semi with lots of lights (which made it easier to see) It was like God was playing cars and he just gently moved our car away from harm.
This last picture is of Fargo. The town actually, no more I-94. yeah, it looks bad too. And the ice was accumulating on the windshield like crazy. At every stop light, people would get out of the car and scrape the wipers or windshields. It was really that bad.

And if the pictures were not enough fun, I will delight you even more, here is a little video so you can "see" what we could (or could not) see. And for an added bonus, a Veggie Tales song in the background.

Have Yourself a Merry Little Christmas

Christmas this year was the most awesome, relaxing, wonderful Christmas we have had in a long time!

Christmas Eve began with a massive house cleaning. Around 2:30, we went to stand in line at church for Mass. They close the doors and begin as soon as the church is full, so 4 pm Mass begins at 3:30. We had decent seats. I brought a bag of crayons and coloring books to keep the kids occupied. I normally don't do this and won't again. All they did was fight over the items! A friend joined us and she was in the middle of the fight. I had to crawl over people to take Cole to the back. He was in Super Tired Hyper Baby Mode- bouncing all over the place and talking. He crashed and burned right at Communion and napped for an hour or so.

My friend and I went back to our house while Adam got pizza. We had pizza and put tired kids to bed. I think Camille was awake for most of the night... and her room is right at the top of stairs. I wonder how much she heard. :(

Christmas morning was awesome! They had a great time ripping into packages. Georgie is slow to wake and he was overwhelmed, so we pulled out his present from Joe, a Zhu Zhu pet. After that, he was happy and played quietly. I spent most of the morning and afternoon cleaning up, and fishing paper out of Cole's mouth.

We had a bit of DRAMA that morning. I put our moist, gooey cinnamon buns in the oven while we opened presents. After a bit, I smelled smoke! The butter overran the pans and was burning on the floor of the oven! Our smoke alarms didn't go off! We fixed the problem quickly and opened all the door, so nothing was hurt, although we were all coughing. The smoke alarm did go off later- when Adam was cooking a ham!

Dinner was wonderful. Adam's ham was so moist it was falling off the bone. I could use my fingers to shread it for Cole. His sister and her boyfriend came over and brought the much-needed-it-wouldn't-be'Christmas without it tree cake. Annnnd she knows I am not an almond frosting person, so she left part of it not almond for me! Yay!

The night ended with a massive Nerf gun war between SIL's boyfriend and the kids. It was awesome!

Since then, we have been battling colds and sinus infections. Adam was miserable first and it was my turn yesterday. Joseph has been saying his head hurts. The babies had pink eye last week and are still on eye drops. It's a barrel of fun pinning them down for drops, let me tell you! Yuck!

Thankfully, Santa (aka Adam) surprised us all with a Wii! We've gotten alot of use o ut of it since no one has been feeling well. It has Netflix streaming on it which is the most awesome invention EVER! I've been watching movies that I have wanted to see but haven't had the time or energy to RedBox. Poor Adam- it's all hippie fair, like "The Business of Being Born" and "Babies" and "Food,Inc." Plus, the kids can watch all the movies that we don't want to pay for but they would enjoy, like Strawberry Shortcake. It's been awesome!

iPad app recommendations

I'd love to hear your suggestions for iPad educational apps.

Anything related to reading, phonics, writing stories or basic math.

Thanks!

Our link

















I was upstairs in the hospital and saw a shirt decorated by a child. It said: “We are all connected by wires. Don’t disable mine.”

It made me think of the link I have to all of you, spread out across the world like Christmas cards on a string, people I never would have known if it weren’t for the blogosphere.

And it got me thinking about how much strength I’ve taken from our online community. When Ben had his surgeries in April, Elizabeth lit a candle for him in Los Angeles. I’d come home at night and find messages from BLOOM readers near and far who were rallying for him and us. Tekeal from Switzerland wrote: “Have been thinking of you these past days... particularly when walking along the river and feeling its healing power and watching the foliage burst with new life – sending it your way.” Stacey from Kitchener, Ont. mailed me copies of Signing Time videos she thought Ben would enjoy. Ellen from Connecticut sent tips on surviving body casts and managing pain. Matt from Toronto shared his experience with surgery and rehab. Many of you prayed for Ben and virtually ‘held’ our hands – too many to name.

Being able to effortlessly tap into your intimate understanding of disability and your support and kindness is a gift that I treasure. Happy holidays to you all and many blessings in 2011!

Acceptance = book's message
























Arlene has plans, Big, Big Plans. She's going to be the youngest ever student government officer in Greenwood Elementary history. She'll be the biggest thing to hit little Rhode Island since the invention of coffee milk. Sure, she wears purple leg braces and has a weird-sounding disease called Charcot-Marie-Tooth, but that won't stop her. Onward she marches, bending rules and blasting stereotypes in an effort to win no matter what.

So reads the back cover of Arlene on the Scene, a new chapter book for children aged six to 12 written by Carol Liu, a social worker and attorney, with her friend Marybeth Caldarone, a speech therapist. Marybeth and her 9-year-old daughter Grace have the same nerve disorder as the main character. Proceeds from the book will be donated to support people living with Charcot-Marie-Tooth disease. I interviewed Marybeth about the book and its message.

BLOOM: How did Arlene on the Scene come to be?

Marybeth Caldarone: The author Carol grew up in Rhode Island and I grew up in New York. I came to Rhode Island for college and Carol was one of my roommates. We hit it off and became really close. Carol was a great listener and loved to look at things from different perspectives. We used to talk about how people didn’t understand what it’s like to live with a disability and how we should write a book one day. Over the years we kept in touch and Carol would keep track of things I said. After she had her kids and was at home, Carol began to write and sent the first couple of chapters to me. I couldn’t believe it. This was a book I would pick up in the store and not think twice. We’d go back and forth where I would critique what she’d written: “Do you think this is really how Arlene felt?” or “Would she say that or do that?”

BLOOM: What is the book about?

Marybeth Caldarone: For younger kids, the characters are so likable and funny things happen. It’s just an enjoyable story about school and the different antics the kids get up to. Older kids can really get into the theme of the book, which is about acceptance. Arlene is a person with a disability. She starts out wondering “Are people going to accept me?” Over time she realizes that she herself is not accepting everyone as much as she’d like to be accepted. The main character – Arlene – is loosely based on my daughter Grace and the mom is loosely based on me.

BLOOM: What do you hope to achieve through the book?

Marybeth Caldarone: Initially we wanted to raise as much money as we could for Charcot-Marie-Tooth research. We'd like to raise awareness of CMT so we don't get a blank stare when we mention it. But as it progressed, Carol began to see the book as a tool for helping people see that it’s not all about finding a cure. It’s also about accepting people for who they are, whether they have a disability or not.

BLOOM: Why is it important that children’s books have characters with disabilities?

Marybeth Caldarone: Disability is a natural thing. It’s all around us and it’s something everybody should be exposed to. Some of the kids in the school I work at are reading the book and they’ll come to me to ask whether things that happened in the book have happened to my daughter. It’s opened up a lot of discussion.

BLOOM: What does your daughter Grace think about the book?

Marybeth Caldarone: At first I think she didn’t know what to make of it. Now she sees how positively the book is being received. A lot of the kids in her school have read it and it makes her feel special and important because she knows about the whole purpose of the book. While the book was being written it was a great tool for her to explore how she feels about things. She would read excerpts that Carol had written and say: “No, that would never happen” or “I would never do that.” It gave me a lot of insight into how she feels about what’s going on. Grace reads parts of the book now and laughs because she can relate to it.

Read more about Arlene on the Scene at the authors' website. Carol and Marybeth are already working on a second book in the series called Arlene Goes Green.

Meet Vance - An Adult with ACC




"Hi my name is Vance and I am 57 years old. I have Epilepsy, Asthma, Eczema, Heart Disease and Complete ACC.

My discovery of ACC is like a jig saw puzzle coming together in pieces."


When did you find out that you have ACC? How old?


"I was being treated for epilepsy and the doctor showed me the MRI and pointed out the black spot in the middle where the Corpus Callosum is supposed to be. That was at age 27. That was the first clue. How I suspected that clue was this:

At birth I was born with vision problems. I had no depth perception in my eyes.

I was told my first grade teacher had to order books with extra large print. I also had to repeat first grade. To my knowledge that was the only special education I had till High School.

My epilepsy started at age 10 and I Started taking Phenobarbital at 10.

Teasing started as a result. This lasted through my school years.

I had many seizures through the years, grand mal, petit mal and psychomotor seizures.

At 12 years old I remember being told I was to old to correct my gated stance.

At 15 or 16 I had 2 tests Myelography and Arthrography. These are x-rays that were used to x-ray my brain. I got sick from the test and was in the hospital for 12 days."



What did you struggle with in school?


"I struggled in school from grades 1 to 12. I can remember learning sentence structure and not understanding it. Math was always hard; fractions were tough and reading books I disliked. I can remember doing reports and not using my own words but encyclopedias.

As an older adult I find that I now like subjects that I did not like when I was young."


What did you enjoy most and do well at in school?


"I guess all through my school years it was lunch or recess the most. I found reading writing and arithmetic hard. Years later I would find that to be true.

I guess the thing I enjoyed the most was working in the school office and interacting with other adults and meeting people."


Did you struggle with social skills in school?


"I was shy quiet boy and had a few friends. I remember the 1960’s being in elementary school and being teased for taking Phenobarbital for epilepsy.

In high school I remember many a day having lunch by myself. Again in high school I was a loner.

In High School I was pretty much a loner.

I attended the football games my senior year and a few dances. The dances were at my high school and the foot ball games were at a high school across town, as we did not have a football field.

I never attended my Jr./Sr. Proms or Grad night at Disneyland.

My favorite outlet was a club called Campus Life/Youth for Christ.

We had home groups that met once a week for a bible study and we also did school events such as seeing how students would fit in a VW Bug. Campus Life San Gabriel Valley did group things such as a Haunted House for Halloween, Easter and Summer Retreats."


Did you make friends easily in school?


"I was pretty much a loner; I had 1 or 2 friends. I had more acquaintances though. I think with being shy as a kid and having health issues did not help but limited me.

In high school I had a few friends thanks to the Campus Life Club.

I made an attempt at college and the ice seemed to break as I had meet new people from my area. That really helped. !!!!!!!!!!!"


Do you still struggle today with social skills as an adult?


"Yes / No!!!!

What helped me was working for my cousin who owns a restaurant and I had to wait on people and give them what they purchased. This helped me break out of my shyness. I was able to speak to anyone!!!!!!!

Age and experience will teach you the dos and don’ts of speaking to people. Being observant of situations helps too. !!!!"


Can you ride a bike and drive a car?


"I had a tricycle when I was a child; I was told I peddled backward, but I eventually learned the right way. At 13 years of age I learned how to ride a bike that lasted till I was 30 when I ran in to an old car parked in a shadow at night.

Balance, coordination, and depth perception played a part in my decision to stop riding a bike.

As far driving goes, I tried several times to get my license but could not pass the driving test."

I asked Vance: I was wondering if you couldn't pass the
written drivers test or the actual driving part of the
driver's test? Did you pass the written test? Then
you couldn't pass the actual driving part of the test?


"The high school gave us drivers preparation, going through a drivers simulator and than behind the wheel training. After that training I did not persue a license right away.

Some time had passed and this time I checked out the Department of Rehabilitation to try again. They paid for a driving school for a week.

This time I went to the DMV and took the written test and passed and then did behind the wheel with the DMV and failed because of blind spots when driving. I tried 5 times."


Did you attend a mainstream classroom?


"Yes, I did from K to 12.

Now I am back in public schools as a disabled adult, taking computer classes.
I am taking my classes self-paced and not lecture style."


Did you receive Special Ed resource help?


"From 1959 to 1972 in my school years, Special Ed did not exist in my school district.

I remember my sophomore, junior, and senior year being in a reading class with the same teacher year after year. Other than that I received no assistance."


Did you attend college? Did you get a degree?


"Yes. I attended a 2-year college out of high school but sadly did not take it seriously. The end result was I did not graduate from college. It was hard and with no special Ed it was even harder."


Do you have a job and if so what do you do?


"I did work for my cousin for 25 years in a mom and pop restaurant.

I pretty much did every thing accept order supplies, pay the bills and do employee pay checks.

After 25 years of working health issues started to interfere with my job and I was laid off because my eczema had started to get so bad.

Than I made an attempt to get on SSI after 4 years of waiting I succeed.

Thank you God!!!!!!!!"


Are you married? Single?


"I am 57 and still single with no children.

Have dated a few times but nothing-lasted more than 4 months.
I have wondered if my ACC had something to do with that."


Do you have children?


"No"


How does ACC affect you today as an adult?


"I think as an adult today my childhood is magnified in several areas such as coordination, reading skills, math skills, social skills, judgment skills etc."


What do you enjoy doing the most in life?


"I thought about it quite awhile as an older person at ¨57¨ as your interest changes, what I enjoy today I don’t think at ¨18¨ I would have enjoy.

Let me give you some examples:

At 18 I did not drink coffee, today I do.

At 18 I was involved with a group called Campus Life/Youth for Christ, today it is no longer in LA County.

Today at 57 I like to watch tennis and a lot of sports at 18 I was not a big sports fan. I think the reason was due to avoid any contact sports because I have Epilepsy."


What are you passionate about?


"I thank God for my family and all the encouragement they have given me over the years.

My belief in God as I know I was created this way for a reason. My hero is the Apostle Paul and his “thorn in the flesh”. Let me say it has taken half of my life to accept the way I am. It has not been easy. !!!!"


This story has been something that Vance wanted to do for a
long time.

Through his own desire (and a lot of hard work
on his part), Vance accomplished what he set out to do.

I am so happy to see the fruit of his labor and to have had
the pleasure of getting to know Vance better. He is a very
kind person.

It is an absolute privilege to be able to include Vance's story
here for you to read.

Thank you very much, Vance. You wrote a wonderful story!

Vance shared this with me in an e-mail:


"I want to help any one I can with ACC. Young or old or ACCer
or Parent."

After posting this story I received an e-mail from a
grandma who has a young grandson with ACC who read
Vance's story. She commented that Vance didn't
mention if he struggled with buttons and fastening
clothing when he was a kid.

Here is Vance's reply:


"You asked me about snaps and buttons.
As a child it was hard to find button holes and than put the
button through the hole.It depended on the shirt to to how long
it took.
Tying shoes was tough after you made the knot I always wanted
the laces even and I hard time making the bow.
I have been told learning colors was hard for me.
There was always a nightly reminder to take my epilepsy medicine too.
Toys like Lego's and Tinker Toys were you assembled things was tough too.
Finally thank God for Grandma's and Grandpa's !!!!
I have a lot of good memories of my grandma,staying with at Christmas.Making cookies,walking to the store store.Taking of me with my broken leg etc.
All my grandma every knew was I had epilepsy.
Remember we are a family brought together by ACC.Lets help and look out for each other."

Sincerely,
Vance


If you want to leave a comment for Vance I am
sure he would appreciate it.


If you are an adult who has ACC or a corpus callosum
disorder, would you like to share your story?

I would love to hear from you. Send me an e-mail

When there isn't a happy ending

I’ve been sad recently. It started when I began to look at how to revise Ben’s communication system on his iPod. I got to the section called “Friends” and realized it was a struggle to think of a single kid I could legitimately put in there. You know, a friend that Ben sees on a regular basis. That led me to recall the day almost 17 years ago when Ben was three days old and we met geneticists who told us he had a good chance of having a syndrome. As we tried to hang on to our hope, my husband asked: “Will he still be able to run and jump and play with his friends?” Ben has never had the strength to run or jump, but it’s his lack of friends that makes me sad. I know he loves the idea of friends. One of my cherished memories of him is as a young child waiting by the window, signing “friends?” on the day of his birthday party. In those days, there were kids who came.

A student in his class this year did give him a Christmas present – a video – and I made a note that we should call him and have him over. He came to Ben’s birthday party last year.

But as Ben heads into his 17th year, it strikes me that he’s one of the kids who won’t have a happy ending (in the traditional sense). You know how people like to hear stories about children who defy the odds, who ‘overcome’ their disabilities?

Somehow it’s not good enough to simply be an ordinary person with a disability. It’s as though the value of a person with a disability hinges on them doing something considered exceptional in the typical world. “He may have a disability, but look what he can do!” I’m sure that most of you can recall well-meaning people telling you stories of kids like this when your child was first diagnosed. At the end of the day, it all comes down to what people can ‘do,’ doesn’t it? Not what they can ‘be’ in the lives of others, but what they can ‘do’ to acquire status in the world.

My son won’t be able to ‘do’ any of those things. I’m not even sure that he wants to, if he could. He’s quite happy in himself, as he is.

Perhaps it’s because he’s nearing the time that other kids his age would go off to university and launch their independent lives that I grieve for him. Or perhaps it’s because I clearly recognize that there will be no 'breakthrough' in his development. That no matter how much time I spend working on his iPod or reading with him or buying him workbooks or making him secret messages he can decode on the computer to improve his keyboarding skills, there isn’t going to be a leap in his progress. Or perhaps I feel inadequate to create the meaningful life for him that rests on the shoulders of parents like me.

I mentioned this to one of our BLOOM bloggers – Amy Julia Becker – and she responded by saying: “I love hearing about the ‘amazing’ people with Down syndrome, but I love even more when I hear about the normal people with Down syndrome. The ones who just live their lives as everyday people, with challenges and delights. If only we as a culture could recognize their contributions instead of ranking them.”

I read a moving column in the New York Times Motherlode blog by Susan Senator, author of “The Autism Mom’s Survival Guide.” It’s called This Little Light of Mine. It describes an epiphany she had about her son Nat’s obsessive worry with diminishing daylight in winter – especially when the streetlights hadn’t adjusted. “For so long I made the mistake of believing, like so many people, that someone with autism could not connect with other people,” she writes. “That because Nat did not show how he felt about me in all the familiar social ways, that he did not care about me. But the streelights panic eventually showed me I was wrong. Nat watched me like a hawk during those times – he who couldn‘t sustain eye contact – hungering for me to say something, do something about the lights. It dawned on me that this could only mean one thing:…Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around them. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”

This change in how she viewed her son – “my openheartedness,” she says – led Nat to relax and be more easily reassured. “This shift, this growth for both of us has changed everything – because he can manage his feelings. I feel a new confidence, as if it’s okay for me to hope for things...” The author imagines her son eagerly waking for a day at his day program, where he may carry meals to elderly people. And while her son may not look to see the smiles of the recipients, she now believes he will feel them, building on the attachment he’s learned is there in others.

It’s a beautiful story. And I thought – maybe I’ll get there one day. Where I feel hope for Ben’s future, his adult life.

But then I couldn't help wondering whether Senator’s son wants to go to a day program? And if he wants to carry meals to the elderly?

Have a Merry Christmas

From our family to yours...Merry Christmas!

This year, all 5 of us will be together for Christmas! And this will be Nina's first Christmas! We are so excited for her, as she will be able to get it. She understands presents, and she understands family. Ask her about Christmas and she will point and herself and tell you all about it, "Nina's grandmas and Nina's grandpas, and Nina's aunties and uncles, and Nina's cousins." 

We tried, we really tried to have a nice family picture, and our friend even brought candy to entice the girls. But, there is only so much success you can have with a 3, 4 and 5 year olds. Especially if one refuses to be in the picture, while the others struggle to get real smiles.

 From the mommy and daddy...Merry Christmas!
 From the big sister...Merry Christmas!
 From the little rascal...Merry Christmas! (And this is the face we ALWAYS get now a days when she sees the camera and she is getting her picture taken)
 From the Ukrainian princess...Merry Christmas!
 The rascal wished for pictures to be over.
 And the big girls smile and say goodbye.
I am not sure if I will be able to post as we will be enjoying time with family. But I wanted to share these pictures.

May you have a wonderful Christmas, and take time to think about the wonderful miracle of God, becoming man. Coming to us as a baby, helpless, needy. How helpless we are without Him, and how much we need Him.

Merry Christmas!

The dog has taken over the house.

... assimilate or leave.

Cole and the Christmas Tree

Hello loyal blog reader. I am the ADORABLE Cole and this is my first Christmas. Like my tree?

And my fingers are tasty!


I am so freakishly adorable... but I have a surprise for you!


Georgie, you are seriously ruining my photo shoot!


Oh, SHINEY! What's this?


This is Santa. He's my BFF.


No, Cole, that's not the REAL Santa. And you can't play with the ornaments, unless they are trains. Then you whine and scream and cry until Mommy carries you away from the tree. Then run back, demanding to play with the train ornaments. Joseph swears if you keep it up, you'll get what you want. Joseph knows, man.



Fine, if I can't play with Santa I will EAT THE TINSLE.

Fine, won't let me eat the tinsle? The camera is MINE to drool on!


Mommy put me in the snowman outfit. Maybe it's time to learn to crawl!


Plan to get a nice photo- foiled by mobility!


SURPRISE! (Isn't this seriously like a classicly perfect photo?)

What you lookin at?


(I have so many freakishly adorable pictures of Cole that I can't pick just one... He photographs so well!)

Quick Takes Friday: Holiday Edition

See more Quick Takes at Conversion Diary.

1.

My adorable children: Happy, Confused, Royally PO'd and Grouchy

2.
 We teach our children to live in PACE.

3.


The fork Santa from a holiday craft exchange. My kids LOVE him.

4.

An ornament from my Catholic parenting board. It was sent all the way from Australia and I wanted to keep the envlope it came it- international post marks and all. But the dog ate it- literally!

5.

I totally dig preschool Christmas gifts. My Princess could not wait to give it to me and I love it!

6.
Pretty beaded ornament from an exchange.

7.
Guess who didn't wear his red holiday shirt? (JOSEPH ANDREW!) And guess who had no hose since the two pack I brought? Yeah, both of them got runs before the second reading at two different Masses. Nice.