Mountain or city, home is where the heart is































I’m excited to share with you an interview with Michelle Miller of Cypress, Calif. Michelle, her husband Michael, and daughter Maya welcomed Michelle’s nephew Dmitri (above left) into their family in 2011 after the death of both of his parents. Michelle runs Fickle Knitter Design—writing books for people who knit—but had no experience with children with disabilities. Dmitri, now 10, has Down syndrome and autism. Michelle’s daughter Maya is 6. The family brought Dmitri from his home on a rural mountain in Virginia to a city in Orange County, Calif. in October 2011.

BLOOM: What events led to your adopting Dmitri?

Michelle Miller: My brother-in-law Ric—Dmitri’s father—was diagnosed with terminal prostate cancer in 2010. In January of 2011, my sister Miriam died from pneumonia. It was totally unexpected as she was only 45, healthy and young. She had been caring for both her husband while he was sick and Dmitri. I thought it was in everyone’s best interest for Dmitri to spend as much time as possible with his dad, before he died, and we did that with the help of family and some respite care. I went and lived there for three months to take care of them until Dmitri’s father passed away in September. We then had to wait another month for the court to grant me legal guardianship and at the end of October we brought Dmitri back to California with us.

BLOOM: Did you have any experience caring for children with disabilities?

Michelle Miller: No I didn’t. My sister and I talked two times a week for a couple of hours each time, so I knew about Dmitri’s life extensively, but that’s not the same as physically being there. I really hadn’t had any experience with disabled children at that point. I had friends who were disabled growing up in school, but I’d never been in the role of caretaker.

BLOOM: When did you make the decision to adopt Dmitri?

Michelle Miller: The night my sister passed away I knew I’m the youngest and best equipped in our family to be able to care for him. But for months I worried: Would I be able to do it all and would I do it well? It was scary.

BLOOM: What was Dmitri like when you stayed with him and his dad?

Michelle Miller: I look so much like my sister and when he came home and saw me he went upstairs and cried. It was hard for me to know it was hurting him to see me. He had a lot of behaviours at that time and he fought me at every turn. I’m sure some of those behaviours were anger and grief at not having his mom around. He was doing dangerous things and didn’t have any concept of danger. When I first got to Virginia it was a battle everyday just to get him dressed and I thought: How will I do this everyday for the rest of my life? It was hard. One of his respite-care workers said he viewed me as a maternal figure, and that was why he was testing me. That helped me get through it a lot.

BLOOM: How does Dmitri communicate?

Michelle Miller: He can nod his head yes and no, and if he doesn’t want to do something he’ll sit down. And that includes if he doesn’t want to cross the street: he’ll sit down in the middle of oncoming traffic! Because he’d been through so much, if he didn’t want to do something, I didn’t want to make him do it. I struggled with that. That’s one thing I was able to talk to his dad about and work out. His dad told me that he and his mother decided early on that Dmitri was going to have to do things he doesn’t want to do because that’s part of being alive.

BLOOM: How did you manage to stay positive while caring for your brother-in-law who was dying and your nephew who was grieving?

Michelle Miller: I just tried to stay in the moment as much as possible. I definitely didn’t complain. I wanted Ric to have faith that my husband and I would do a good job. My daughter wasn’t in school yet so she came and stayed with us for a couple of weeks at a time.

BLOOM: What was the most challenging part about bringing Dmitri into your family?

Michelle Miller: Learning how to get him to do the things he needs to do everyday. But I’ve figured out how to motivate him. Chicken nuggets and ice cream are good motivators. He’s a good boy and although he still sometimes doesn’t want to do things, he’s a different kid now.

BLOOM: How did he adjust to coming to live with you?

Michelle Miller: He still had some behavioural issues but he seemed to feel at home right away. We changed the guest room into his room and bought him some special furniture and brought comfort items of his from Virginia. It seemed like he knew this was where he was going to be. But it took a lot longer for him to feel really comfortable.

BLOOM: How did your daughter adapt?

Michelle Miller: She’s amazing. When Dmitri’s dad was still alive, she asked me if Dmitri was going to be her brother. She was only five at the time and I didn’t know how she was able to perceive that. She’s great when we go out in public. She’ll tell people “This is my brother. He doesn’t talk and he has autism.” Dmitri’s dad said Maya was the first kid he ever played with. He would let her come into his room and play with his toys. They would hang out together—more side by side than play. Dmitri lived on a mountain in a very isolated area, so he hadn’t had play dates and regular contact with kids. Maya’s been a tremendous influence on his life and I think a lot of his gains have been through being around her. Now he has regular contact with other children.

BLOOM: How have you changed since Dmitri became your son?

Michelle Miller: You’re trying to get me to cry, aren’t you? I’ve changed a lot. The strides Dmitri makes may be little in other people’s eyes, but I know how hard he’s working and how much he’s accomplished. I embrace and value the small things a lot more. I feel so grateful for everything that I have.

BLOOM: How do you keep the memory of his first parents alive?

Michelle Miller: He hears us talking about them a lot. My sister was a photographer and we have her photos hanging in the house. We have pictures of him and his parents together. My sister was such a big part of my life that it’s something we talk about often.

BLOOM: How did you learn to get the services Dmitri needed and advocate for him?

Michelle Miller: I have a background in physics and that gave me a really good ability to do research. In the months while Dmitri’s dad was still alive, I found out about the agency that provides services to people in our county and I started e-mail contact with them. I talked to as many other parents of children with disabilities as I could, and I read books. There are a lot of wonderful services for disabled folks here, including the special school for children with disabilities that Dmitri attends. Many of the services are offered through our Regional Center system and often are subsidized through special programs. Right now we do respite care and will soon start ABA therapy through Orange County.

BLOOM: Would you say this opened up a new world to you?

Michelle Miller: Yes. We now have a family that we do play dates with that has a son with autism. And we’ve met other families of children with disabilities.

BLOOM: It sounds like having your own business allows you to balance the needs of your kids and your work.

Michelle Miller: It’s wonderful. I’m able to put Dmitri on the bus and able to help my daughter get ready for school, and when Dmitri gets off the bus I’m there. If I need to pick either of them up from school— or take Dmitri to doctor appointments, and he has a lot of them—it’s not an issue. I can adjust my schedule. If the kids need something, I can put my work down.

BLOOM: What kind of things does Dmitri enjoy now?

Michelle Miller: He likes electronics and musical toys. A favourite thing of his is a bouncy ball that he’s good at bouncing. He has an MP3 player with children’s music that he likes. And recently he began interacting with an iPad, which really shocked me. He likes Netflix and there’s a group of apps I got for him called Starfall, for reading. I can hear him in his room right now playing the one where he has to do a sequence of events to make the turkey dance.

BLOOM: How did your husband manage with the adoption?

Michelle Miller: He was amazing. He never put up any roadblocks. He came out to visit us and worked remotely. He co-parents with me. He parents Dmitri just like I do.

BLOOM: What practical advice would you offer a family adopting a child with disabilities?

Michelle Miller: I would say reach out and find out what sort of services are available in your local community and network with other parents. Many times you won’t know exactly what services you can get until you speak with other parents. I talked a lot with Dmitri’s respite-care workers in Virginia and every time I go into his school, his teacher and I compare notes and I observe how they interact with him. In some ways you can’t prepare yourself for adopting a child who can’t talk. They’re sort of trapped in themselves.

BLOOM: How is Dmitri doing these days?

Michelle Miller: In the past three to four months he’s become a pretty happy kid. He smiles a lot. He’s really settled and comfortable. If he wants something like the ketchup he’ll go and get it himself, which is pretty huge for him. That shows me that he feels really comfortable and confident.

BLOOM: How do you feel about adopting Dmitri now?

Michelle Miller: I don’t think about it too much. I know it was the right choice and I’m so happy we did it. Even though it’s been really difficult I would do it again in a heart beat.

Read more about the process of adopting Dmitri on Michelle's blog.

Looking Forward and Back: On 2012 and What 2013 Might Bring

As always, I have been reflecting on the past year. It's been a pretty awesome year. Joseph received his First Communion and has gone from being a squarely little turkey in Mass to a well behaved young man. Camille turned six, got her white belt in TKD and is really progressing in her reading. George said his first three word sentence and is making such HUGE strides in speech. Cole is defiantly the baby of the family. 2013 will rock his little world.

We got the call right after Adam's surgery that Cole will begin the first phase of preschool speech evaluation in February. He will be in George's old AM classroom, which is perfect for both him and me. He is familiar with everyone who works in the classroom and I really like the team they have. Of course, being our strong willed and slightly spoiled Bear, he likes to do things his own way on his own time. His most used word is NO! Second to NO! is MINE! I think listening, following directions and having to wait his turn are going to rock his world but full time preschool is going to be really, really good for him.

After the New Year, George will be moving to the afternoon class. Same teachers, same paras, same room, familiar friends from last year but a new time. Yes, this means that I will have about one hour between picking up Cole and dropping off George. It's daunting but we will make it work. The boys might take the bus one way (home for Cole and to school for George) but we are going to give it a try without the bus for a bit. I hope that by this time next year he speaks clearly (more clearly than now, at any rate), continues to try new foods in different textures and continues to grow in confidence in himself.

I hope both boys will have ditched the sippy cups, and one of them will have ditched the diapers. (Please, one of you? Either one? Not picky here!)

Gosh, in December 2013 Camille will be almost eight! She will have received her first Reconciliation and will be prepping for her First Communion. I hope her reading takes off even more than it already is. She wants to learn to sew and crochet and I plan on teaching her. Adam and I both want to spend some more one on one time with her, as she has shown a but of middle child syndrome. She's recently discovered she likes Star Trek and will cuddle with Adam to watch the show. I'd love to see her progress in swimming and in TKD.

Joseph... ah, the big boy who never stops growing. He'll be close to TEN. That's just INSANE! He's talked about joining the Leadership team at TKD and I think he would be excellent at it. He's close to the next belt level and I think he will progress through 2 or 3 more levels in 2013. He's close to committing to working towards his black belt. Look out world, he will take you OUT!

Adam and I will officially begin our second decade of being married on April 20. Eleven years. I don't feel old enough to be married ten years, let alone nearly 11! I suppose that happens when you met your future husband at 14, though.Our Washington DC vacation was a huge mild stone for us: ten years of marriage and our first solo vacation without the kids. 2012 is also the first even numbered year when we did NOT have a baby!

 I know Adam wants to continue to grow in his profession. He wants to continue swimming and get more tone. I need to loose 50 pounds, per my doctor. I want to grow my Thirty-One team and go to the national conference in July. As always, cost is a consideration, as is time away from my family. Hopefully, I will make it work!

As for the blog... dude, 2012 was a good year for the blog. Lots of reviews and giveaways and book reviews. Man, I love book reviews! Heck, I love all reviews and giveaways! I get to test new products or read new books and then spread the love by hosting a giveaway! Works for me! In 2013 I want to continue on that vein, continue writing for the Natural Parents Network and perhaps write for a few more magazines. We'll have to see. I am really happy with my writing now, so I expect that even if I stay on the same path with it, I will still be happy and fulfilled.

I hope 2012 was wonderful for you.

Les Miserables...and why I love movies and musicals

Two nights ago my husband, my sister and I watched Les Miserables. All three of us were giddy in anticipation of an incredible performance.  I exected to be moved, to be inspired, and cry. I was sure I would go through a box of tissues and I was actually looking forward to that experience of the show.


I love the story of Les Mis. It is truly the story of grace, forgiveness, and a changed life. Have you ever listened to the musical? Wow! The lyrics, performances, voices, and orchestra are INCREDIBLE. Put those two together and you know you are in for a treat, right?

I speak music. Now, I am not a singer, I am a dancer, but when I hear music, and singing, my soul connects in a powerful way. This is one of the reasons I love musicals so much.

And let's not forget the power of story (especially in cinematography when you see it unfolding before your eyes). Some stories are so powerful that they change you, they touch you, and they inspire you.

As the end credits rolled out, I sat motionless in my seat. Les Miserables was a good movie, but there was something that just didn't sit well with me. It took me a while to figure it out, but I finally did. I felt cheated.

The story is complex, and there is so much to tell. However, the events happened so quickly that it was hard for me to follow (even being familiar with the story). I had no emotional investment or connection to the characters. Yes, Ann Hathaway's rendition of "I dream a dream" was as amazing as the previous show. However, before that, I did not feel emotionally drawn to her plight. Her song moved me, but her story...well, it did not. It happened so quickly.

Oh the singing was great, I do not even have anything bad to say about Russel Crowe and his singing. It just didn't...connect.

Another great performance was "Empty chairs"  and Eponine was incredible, but then again, I did not feel this great sadness or loss.

Maybe this is a good place to also point out that since this is a movie, I did not expect it to be all singing. No dialogue, no talking, all singing. I don't know, singing, "Who is out there" takes away from how powerful it would be to say, "Who is out there" if you were terrified to find someone that wants to kill you, no matter how terrified you look, if you sing it rather than say it, it is not the same (in my humble opinion). So the "we sing everything" approach actually took away from my enjoyment of the movie, and it took away from the powerful songs, because it all became singing (and I really do love singing).

So maybe Les Mis, the movie, was not my cup of tea. Maybe this is just a style that does not "speak" to me. I really, really wanted to love it, but I felt like the previous did a lot more for me than the actual show. I did come home and found some Broadway performances to "redeem" the experience for me, and yes, I do love Les Miserables, absolutely love the musical too...just not this particular movie version.

What about you. Did you love it? Was it everything you expected it to be? Were you disappointed?

A physics teacher's lessons on love


Quick Takes Friday: Holidays By the Numbers



  1. ONE sad husband. Christmas night he turned me to and said, "And tomorrow, the secular world will act like Christmas is OVER! It isn't over until Epiphany!" I just stared at him. This is a far cry from the Scrooge I married!
Don't worry, I promised to make Christmas last much, much longer by finally baking sugar cookies and playing my Jingle Spells CDs all the time! I am so giving like that!
 
2. TWO kids who gave me a great picture a few weeks ago:
 
    3. THREE times a day I have watched the Polar Express since July. My parents gave the little boys a model Polar Express that runs on a track and says things like, "ALL ABOARD!" Tom Hanks is now haunting my dreams.
     
    We also have THREE new boxes of cloth diapers! I have been hunting high and low for affordable cloth diapers for children over 35 pounds. Apparently, kids are supposed to be day and night trained by the time they are 35 pounds. Huh. Sure. Thankfully, Mandy at Living Peacefully with Children gifted me with three boxes of hand me down pocket diapers in medium and petite/large. The larges FIT George! It's a huge help since we are at the point where we NEED more cloth diapers and I don't want to/can't spend a ton since someone (either one, anyone!) will be potty training soon.
     
    4. FOUR time I am interrupted per page when I try to sit down to read. My mother loaned me the last two books in the Call the Midwife! series. They are so interesting! I love history told through the eyes of people who are not presidents or major leaders. It gives such a different perspective on historical events and life during that time period. The lives of the people in the East End of London during the 1950's is fascinating and the stories of the workhouses are heart breaking but a must-read to understand many social and political ideals of various time periods.Of course, there's enough birth stories and information about midwifery practices during that time period to keep this birth-junkie happy!
     
    I also have The Casual Vacancy to read and I think my dad is sending me a book about Joseph Kennedy Senior. I've already read Mrs. Kennedy and Me (another great read!), The Kennedy Detail and Killing Kennedy.
     
    5. FIVE things that Cole broke this holiday season: Three balls ornaments that I made several years ago (to be fair, he had help from George), one Royals "ball" and a glass bowl.
     
    6. SIX people in this house who are starting to go stir crazy. We need to break out of this joint but don't want to brave the crowds and have nothing we need to buy. Plus, we're not ready to see Valentine's Day hoopla in the stores!
     
    7. SEVEN days since I began to tell Adam I needed him to order more of my hippie-dippie-can-only-get-on-line shampoo. I am now plumb out of it and my head itches. That hippie shampoo is well worth the six to seven dollars a bottle I pay for it! Don't worry; we finally ordered more!
    

Overheard: Those hippies!

A few nights ago we were stopped at a stoplight. The van in front of us had a ton of bumper stickers that encouraged us to spend money on education not war, PEACE and to COEXSIST. Adam and I read them silently and after a moment he said, "Eh. Hippies."

Remembering a conversation we had just had about him PREFERRING whole wheat pasta over white and craving GRANOLA, I shot him a dirty look. Suddenly, a little voice behind me said, "HIPPIE!"

Adam started snickering and said, "George, are those hippies?"

"HIPPIE!"

"Knock it off!" I hissed to Adam who was shaking with laughter. To George I asked, "George, what does hippie mean?"

"It.mean.hippie!"

Adam was laughing harder now and I was giggling. "YOU are a hippie," I informed my all natural peanut butter, gardening, animal loving nature boy.

"Nooooo. Daddy hippie!" he said gleefully. "Dem hippie!" he shrieked pointing at the van.

By this time, we were all laughing as we drove away to George singing "hippiehippiehippie!" from his car seat.

The 'perfect' holiday: make it a family tradition















By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it’s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He’ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I told him that my brother was sleeping over on Christmas Eve. He was very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell’s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren’t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: “No one in my house.” He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad’s room helped resolve the situation.

Going to other peoples’ homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal “It’s time to go home NOW” switch is thrown and we need to be ready to move pronto. On a positive note, his ability to tolerate longer evenings out has increased over the years so there is hope!

Another issue we face is managing our family’s expectations of the holidays. It’s our job as parents to try to make sure our children enjoy this special time of year. But to do that, we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with our family’s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law’s home. It was a loud, boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't happening.

“But we should all be together," she said. “That’s the way it’s supposed to be.” She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to have to explain to her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual occurrence, it does get easier as the years go by.

While your family may or may not get why you set things up at celebrations the way you do, you know what’s best to ensure your kids are happy and safe. And along the way, maybe we can all start a new tradition or two!

I'm at Love That Max today

Pop over and see my interview at Ellen's site.

Thanks Ellen! Louise

Culture, Christmas & Adoption



Somehow, in all the years I've watched Miracle on 34th Street, I've managed to miss this scene until this year, where a Dutch girl comes to see Macy's Santa.  The mother explains that she's newly adopted, having spent time at an orphanage in Rotterdam.  The point of the scene is that Santa can converse with her in her native language, thus proving to doubting Susan that he is the real Santa.

But what I see is the importance of language and culture in transcultural adoption.  Look at how somber the little girl is while waiting to talk to Santa, and then look how her face lights up when he can actually talk to her in the language she knows! This isn't about the miracle of Santa Clause to me, it's about the importance of culture. . . .

According to the trivia section of IMDB, "In the untranslated dialogue with the Dutch girl, Santa Claus asks the child what she wants for Christmas the girl says she wants nothing, telling Santa she got her gift by being adopted by her new mother." Sweet, yes.  But it doesn't change the optics about how important culture is, nor is the importance of culture inconsistent with  the girl's happiness with being adopted.  It's possible to both mourn the loss of culture and love one's adopted family. 

So this 1947 movie got right something we sometimes forget today -- international adoption involves both loss and gain.  And adoptive parents do the right thing when they try to keep their kids connected -- even in imperfect, incomplete ways -- with their birth cultures (No, I don't believe there's anything I can do to ensure that my children will truly experience their birth cultures living with me in America, but I also think I can do things that recognize and honor their birth cultures). 

Holidays, including Christmas, can be a great time to bring a touch of your child's birth culture into your home.  Consider these past posts:

 Christmas and Adoption
A Touch of China Christmas Tree
A Touch of China Christmas Tree II

Vacation

I am on a small blog vacation while my husband heals from foot surgery and the holidays are going on. Expect me back after Christmas with IEP information, an update on what Cole will be doing in the spring, the graces from Reconciliation and the Eucharist and more!

Five things parents should know about autism






















Scott Lentine, 25 (above), is a college graduate interning at the Arc of Massachusetts. He loves dogs. In his work, Scott advocates for disability legislation to improve the lives of people with developmental disabilities. Scott has Asperger’s and writes about his experiences in poems. I asked him what five things he would share with parents raising younger kids with autism. Thanks Scott! Louise

Five things parents should know about autism
By Scott Lentine

1. Autism is not correlated with violence. I say this in the wake of the Newtown, Conn. tragedy.

2. People on the autism spectrum can have a wide range of emotions and attributes.

3. Not all people with autism are lonely.

4. People with autism can have diverse interests in subjects and hobbies.

5. Parents should try their best to find the appropriate doctor and psychologist to make their lives happier. Treat your child with warmth and kindness. Using fidget toys and sensory-integration tools can help soothe tensions in the child with autism. In addition, parents could help find friends for their child: kids who might have similar interests and who are sympathetic to the child with autism. The friend can be on the spectrum or neurotypical. I do wish I could have had more friends when I was younger.

I also asked Scott what he had learned during his internship at The Arc.

“I learned that people with developmental disabilities often do not get proper public services or health care after turning 22 and formally leaving the public educational system. There needs to be universal health care (physical and mental) for people on the spectrum and they should not be denied insurance coverage.

“I tend to view the autism community as a new civil rights movement similar to that of African Americans and LGBT citizens. There definitely need to be more songs about autism. Perhaps, people like Neil Young, Joan Baez, Judy Collins, Bruce Springsteen, Bob Dylan, Peter Yarrow, Pete Seeger and Tom Waits could do songs about this subject. It would also be great if Hollywood did a movie on the life of autism activist and physician Dr. Margaret Bauman. I saw her when I was a child in the 90s in Lexington, Mass.

Below is one of Scott’s poems:

Just a Normal Day

Never knowing what to say

Never knowing what to do

Always looking for clues

Just a normal day


Feeling unsure

Totally perplexed with everyday life

Always on edge never certain

I wish I could lift this curtain

Needing to constantly satisfy my need for information

Always online searching for new revelations

Going from site to site

Obtaining new insights every night


Trying to connect with people my age

Attempting to reveal my unique vision

But ending up alone and unengaged

Feeling like my life needs a total revision

Just a normal day

How have you changed?










Holland Bloorview family leader Cheryl Peters asks: "Have you changed as a person since having a special-needs child?" Hop on over to Parent Voices on Facebook and join the discussion. How have you changed?

ACC - "The Mystery of the Missed Connection" article - January-February 2013


Many months ago, I was contacted by a writer, Daisy Yuhas, from Scientific American Mind magazine who was inquiring about connecting with an adult who has Agenesis of the Corpus Callosum, who would be interested in being interviewed by her for an article about ACC in their magazine. After carefully checking her credentials and exploring their magazine further, I sent out Daisy's request to the ACC Adults yahoo e-mail support group and was so excited to learn that there was an interest from not only one adult who has ACC (but from SEVERAL adults) who wanted to be interviewed for the article.

In our correspondence between then and now, it was revealed that Daisy hoped to be able to not only write an article about one adult, who has Agenesis of the Corpus Callosum, in the magazine but to also include a follow-up to the article where she could include several more stories about other adults with ACC (who she interviewed).

This morning I received an e-mail from Daisy Yuhas who informed me that the ACC article is finished and it will appear in the January/February 2013 issue of Scientific American Mind. The additional stories of adults with ACC was published today, December 20, 2012, and appears in their Scientific American Blog.

I am including Daisy's e-mail below, so you can read it for yourself:

"Dear Sandie,

I hope that you're doing well! I just wanted to share that the agenesis of the corpus callosum feature will appear in the January-February 2013 issue of Scientific American Mind (you can find a preview with a paragraph or two online—the issue will hit newsstands in the new year). In addition, Scienitfic American has run a blog post that shares a few additional stories. I realize I can't possibly do justice to the full range of experiences shared— but I want to thank you again for your help in putting me in touch with others who could share their stories. I truly believe that readers will find strength in reading these experiences.

All the best and very happy holidays,

-Daisy"

This is incredibly exciting news and, thanks to each one of the adults who have ACC who shared their stories (and who revealed personal insights about living life with Agenesis of the Corpus Callosum), as well as the people at Scientific American Mind, there is now an even greater awareness about ACC, which brings us one step further in helping other adults and children in the world who have this congenital brain anomaly.

I know that (as a mom myself of a child with Agenesis of the Corpus Callosum) I definitely plan to buy a copy of the January/February 2013 Scientific American Mind magazine for The Mystery of the Missed Connection article.

Gratitude














Reading Jack Tourin's story yesterday made me recognize how perspective is everything: it can flood our life with beauty and wonderor just as quickly drain it of these qualities.

In the spirit of savouring time with Ben, last night we played a game of Scrabble. We haven't done this in months, and Ben wasn't initially psyched about the idea.

However, we soon had the board out and Ben had made his first word: "DO." This was followed by "CATS" and some other rudimentary words. My chest hurt in that good way, when you feel filled up snug with gratitude: A few years ago he couldn't have focused for more than five minutes, and last night we played for an hour.

Ben was able to enjoy the back and forth and choosing of his new letters. At one point he came up with the word "COAX" but we couldn't find a spot for it on the board.

He was thrilled to get a "J" and began rooting around in the letter bag to pull out the letters to spell his beloved "JESSIE" from Toy Story.

We had just finished when Charlie Brown's A Christmas Song came floating up the stairs, reminding me of how as a child I'd run downstairs with my brothers to watch the annual Christmas specials on TV.

We decided to forgo homework and Ben and Ken went downstairs with D'Arcy to watch Peanuts. Ben isn't familiar with the characters, but I knew he would love them. And he didespecially the nameless Little Girl with Red Hair that Charlie has a crush on: Ben obviously thought she was a dead ringer for Jessie.

"He kept saying the girl was Jessie," D'Arcy said afterwards, with a touch of annoyance.

But even Ben's obsession with a Toy Story character who, like him, just wants to be loved, couldn't shake my feeling of contentment. Ben still has the excitement of a child for Christmas. He regularly takes me to the calendar to show me the date and signs "What do you want for Christmas?"

Last night I felt the joy of the season and held on tight like it was a wild toboggan ride.

Teacher of ACC Student - Reading Comprehension



Alexandra Berube has written several guest blog articles here about her teaching experiences with her student who has Agenesis of the Corpus Callosum. She is a former Kindergarten teacher, who first taught the student in her Kindergarten class and she also tutors the student, who is currently in a regular 3rd grade mainstream class.

Her most recent article today is about Reading Comprehension. In our e-mail correspondence, Alexandra shared information with me that I am including here for you to see (with her permission) as a preface to her article:

Alexandra writes:

"Max came into Kindergarten already reading because his family had been working with him before he came to kindergarten. He already knew a lot of sight words and understood decoding and blending when we started working together. His speech skills were not strong so it was hard to understand him (and know he was reading the correct word) but he did speech therapy and that helped a lot."


GUEST BLOG POST


Reading Comprehension--Taking it to the Next Level
by Alexandra Berube, bostontutoringservices.com


Max and I did not spend time working together during his second grade year, because he was receiving services through school. At the end of his second grade year, I began working with him again, picking up where we had left off the previous summer. His mother's goals were for him to improve his reading comprehension in the following three areas: making inferences, comparing and contrasting, and deciphering main idea/details in text.

In my assessment of his reading comprehension at that point, I noticed that he didn't anticipate the next steps in a text based on the clues. For example, if a character is put into a situation and someone tells him not to move, *Max did not anticipate that the character would of course move, because that is standard literary practice. He didn't know how to anticipate these common literary themes that would help him make predictions in his reading. His predictions were usually completely unrelated to the story structure so far.

I started reading books with him that all had a theme: the character did something bad at first, then did something good, and everybody likes the character in the end. We read books such as Walter the Farting Dog and Leo Lionni’s Frederick. I wanted him to learn of this story pattern, which is so common in literature (and movies). I also wanted him to be able to contrast and compare the way that the character interacted with the others in the book in the beginning (and how they treated the character in response), and how things changed at the end. This also related to cause and effect relationships, because the character acted a certain way and the effect was that the others related back to him in a certain way (first he was ‘bad’ and they didn’t like him, then he was ‘good’ and they did like him). We also did many text-to-self and self-to-text relationships to help him connect to what he was reading.

We continued to practice reading stories with this literary theme so that he would improve in his ability to make predictions. Adults are used to so many classic story patterns that we can anticipate when a common literary theme is being used. But young students don't have this storage of knowledge, and I wanted him to get used to more and more of the literary themes he would encounter in his reading, so he would be able to make predictions and make connections between what he already knew and what he would read.

Talking about the structure of the stories also helped focus on the main point, because the main point is a larger perspective of the story, not the details in the story specifically. Many students focus on the individual details and can't back up farther to get the main point, but when talking about patterns between one story to another, it's easier to step back and see the larger story structures at hand. The more you do this, the more they also begin to understand the order of events and the idea of cause and effect

The more we did text-to-text relationships between the books we were reading with common story patterns (including many text-to-self relationships so he could relate personally to what was going on in the story), the more he was able to make predictions about the text, make inferences about what was going on, determine what the main point was, and figure out the cause and effect relationships.

This study of a specific literary theme helped Max realize that there are patterns in stories that he can recognize. All stories will not have this literary theme of ‘character is unliked, does something good, is then liked by others,’ but all will have a main point, all will have cause-and-effect relationships, and all stories have a beginning, middle, and end so that you can compare and contrast what happens from one part of the story to the next. You can also connect stories to other stories and to yourself. You can make predictions based on what you have seen characters do in other stories, or based on what you would do in that situation (text-to-self relationships). Just the knowledge that all this is going on helped Max know to look for these clues, and to be an active reader (not just ingesting details, but seeking out broader answers). This is the goal of every teacher in instructing reading comprehension.


*Name has been changed.


Hint: don't forget to check your local library when looking for the books mentioned here (or other books).


About Alexandra Berube


Alexandra is the Managing Director of Boston Tutoring Services, a tutoring company that offers one-to-one in-home tutoring in Massachusetts. She is also a former Kindergarten teacher who also tutors students in grades
K-8, in all subject areas, including test preparation.


--click below for printable version of this article--

Reading Comprehension--Taking it to the Next Level - printable version


Watch for an upcoming guest blog post here in the near future from Teacher/Tutor, Alexandra Berube.

As a teacher and professional tutor, Alexandra plans to share more future guest blog posts here--where she will reveal additional insight into her student who has Agenesis of the Corpus Callosum and how it affects the student's education, and she will also be sharing teaching strategies that have helped her student.**


**Note: Agenesis of the Corpus Callosum has a very wide range of effects--ranging anywhere from no symptoms--or mild learning disabilities--to severe mental and/or physical challenges. It can sometimes also be seen with other medical conditions, genetic syndromes, chromosomal anomalies and more. Every person with ACC can present differently in terms of their development, cognitive abilities and educational needs.

Each child who has ACC is a unique individual with their own abilities, weaknesses, challenges, motivations, strengths, as well as their own style of learning.


Greggy's legacy is a life savoured

Last week I read a story by Jack Tourin (in the two outside photos) in The Healing Muse, a literary journal on medicine, illness, disability and healing. Jack wrote about losing his son Greggy (in all photos) when he died at age 17. When I asked about reprinting the story, I learned that Jacka former Indiana high school English, Spanish and French teacheris now 90. Jack's daughter Kathy told me he was excited to hear we were sharing his story. Jack's message about how Greggy delighted in his worldwhich to an outsider had been made smaller by disabilitiesis powerful. 

Greggy's legacy is a life savoured
By Jack Tourin

On Sept. 17, 1980, my son, Gregory Mark Tourin, died. He was 17.

The usual outpourings of sympathy after such an event were somewhat muted. A few close friends commiserated deeply and sincerely, but others were more restrained. Some stated openly what they thought, while others implied it: "How can any parent mourn the death of a severely handicapped child, a child with nothing to look forward to? They should be glad it's all over."

Well-meaning people would say to my wife and me, "It’s a blessing, really." Or "Your 17 years of sacrifice are over. Now, you can live for yourselves." They failed to see the other side of this coin of sacrifice.

What mattered to us wasn't what we did for him, but what he did for us.

Greggy was born severely mentally disabled. He also had cerebral palsy. He spent most of his life in a wheelchair. During the last five years of his life, he was almost completely immobile. The only parts of his body he could move were his toes and wrists. All the natural functions of life that others accomplished automatically had to be done for him. Yet watching this child struggle to gain satisfaction, saluting each day with wide-eyed wonder at what was to come, drinking in and enjoying the tiny portion of life that was allotted to him, gave us a reward that can't be measured in normal human terms.

Taking care of Greggy was a 24-hour-a-day job. He was a very demanding child because the only means he had of controlling his life was his voice, which he used constantly. He learned to baby talk when he was five and talked this way for the rest of his life. During all that time, we never heard from that baby talk one word of self pity or bewailing his fate.

What we did hear were demands to see, do, and go.

Greggy wanted to see everything, go everyplace, and learn everything he could. His world was restricted to a far smaller portion than that given to most people, but that tiny share of life was a constantly unfolding vista of wonderment for him.

He could read signs and large advertisements long before any teacher attempted to teach him. We discovered this when we were going through the yellow pages of the telephone book with him. There he was, calling out the names of the companies that had the larger ads. The finer subtleties of reading always eluded him, but he was able to determine that the larger sign with the big red logo meant K-Mart and the one with the circles meant something else.

When life wasn't interesting to Greggy, it was funny.

When I became cross with him, he would say, "Daddy get mad," his eyes sparkling with anticipation, so I would wave my arms, pretending to be wildly furious. This brought a deep, heartfelt, natural, all-encompassing burst of laughter from him. No one but a mother or father can understand how it feels to hear that delirious sound of pure innocent joy. My wife Beatrice and I would hear the same happy sound when we acceded to his request of "Mommy and Daddy dance!"

Once, when we were driving and he was in the front seat next to me, I said, "Greggy, if you say one more word or make one more sound, I'm going to throw you right out that window. Understand? One sound and out you go!"

He looked at me with an impish grin for a moment and then blurted out: "Baaaaaaah!"

My wife and I sang to Greggy constantly. He memorized many of the simpler songs. During his last two years, he sang himself to sleep every night. He woke each morning laughing and demanding to savour more of life.

His favourite place to go was our local shopping mall, where he liked to look in the store windows and ask us to buy him things. He knew we couldn't buy him everything he asked for, but he seemed to enjoy just saying the words. In his own way, he was improving his vocabulary and his reading.

On the morning of his death, at one o'clock, on his way to the hospital emergency room, Greggy asked to be taken to the mall. We had no idea that he had only a few hours to live. We were on our way to get the cough and congestion in his chest relieved so he'd be able to sleep. He had had worse chest colds than this and had always recovered quickly.

Whether Greggy realized that he was dying we'll never know because he was cheerful and funny right to the sudden end. However, I've always suspected that he knew a lot more than we ever dreamed was possible. If he did know that he was going to die, then he had decided to finish his life as he had pursued it, developing what he had to the fullest and learning what it was possible to learn right up to his last breath.

After the funeral and the departure of our friends, Beatrice and I returned to our strangely silent house.

Our friends were wrong. It wasn't over.

It will never be over until my wife and I are gone and the last echoes of his singing, his laughter, and his constantly curious voice are buried with us.

For six days, I sat in the living room and cried. At the height of my agony, I made some wildly emotional decisions. I was going to quit my teaching job. I was going to retire from life. I would never smile or laugh again.

As I sat there struggling with my grief, many unusual questions came to me. One of them was: What would Greggy have done in a situation like this, if one or both of us had died before him? I knew he would have missed us deeply, but he wouldn't have buried himself in a morass of self-pity. He would have continued to use whatever limited ability he possessed to develop, to learn, and to drink his tiny cup of life to the fullest.

To honour Greggy's memory, I decided to do what he would have done: study, learn, teach, and use my life in the best way possible.

After my son was gone, I was never able to recapture his closeness by sitting in my chair and weeping. However, over the years, when I looked into the eyes of some of my students and saw a look of magical curiosity or a sparkling sense of humour, a strange thrill went through me. I knew that for that one heavenly suspended second I had looked again into the eyes of Greggy.

Thank you, Sheepdogs

A popular Mr. Rodgers meme going around that reminds us that, in times of tragedy, to think of all the people doing good.

Like the staff members at Sandy Hook Elementary. Their quick thinking and willingness to sacrfice themselves for their students makes them heros.

They are Sheepdogs, protecting our precious baby sheep.



My Brokenness and Prayerlessness



I live in a world plagued with evil and suffering.  Broken lives walk around me and I look past their hurting hearts. This is a lost world, a fallen world in need of hope, in need of light.

Last Friday I had to recognize not only the darkness, but my own prayerlessness.

Because this is what has been so heavy in my heart.

It is about the fact that I forgot how to pray. I say I believe in the power of prayer, yet the time I spend in prayer is insignificant. How is it that I can access the Almighty God, yet instead I choose to spend my time browsing through Facebook statuses, or researching the best parenting sites? 

And this is when once more I am confronted by my own brokenness and my own need for God… my Redeemer, my Comforter, my Hope.

Would I be different if I devoted time before the throne of God each day? Absolutely.

Would our church see fruit if I prayed as fervently about our ministry as I complain about how difficult it is? Without a doubt.

Would my girls be more alert to the doings of God in their lives if I was more aware of them myself as I recognize His voice throughout my day? Yes.

A tragedy brings us to our knees, it makes us realize how far we have moved away from the Lord, and how we have allowed darkness to cover the light we are supposed to give and spread with this world.
But darkness cannot destroy light, not when Jesus has already won the battle for us. And sometimes, it takes the precious and innocent blood of children to make us wake up and see the brokenness inside us, and how desperately we need God to be ever present in our lives, in our hearts, in our words and in our actions.

Because He has come so that we have life, and have it to the full. And so I am ready, ready to embrace this full life He offers, and to do so, I need to spend time with Him. I need to hear His voice.
So I will fall on my knees, spread out my arms and ask God to mend the broken pieces of my heart. I will ask Him to make me whole. I will beg Him to move!

The same God who parted the Sea, the one who made the blind man see and the lame man walk…He can move today too. So move Lord Jesus, show us your power, your Glory, and your unending Love.

Natural Parents Network 2012 Blog Blitz!

I am proud and honored to be a volunteer with the Natural Parents Network (NPN), a community of natural-minded parents and parents-to-be where you will be informed, empowered, and inspired. When you visit the NPN’s website you can find articles and posts about Activism, Balance, Consistent Care, Ecological Responsibility, Family Safety, Feeding With Love, Gentle Discipline, Healthy Living, Holistic Health, Natural Learning, Nurturing Touch, Parenting Philosophies, Practical Home Help, Preparing for Parenting, Responding With Sensitivity, Safe Sleep, and so much more! Today I would like to share some bookmark-worthy posts that highlight several wonderful posts from 20 volunteers with the Natural Parents Network. These posts were featured on the personal blogs of the Natural Parents Network volunteers and are some of the best of 2012. We hope you enjoy reading these posts as much as we enjoyed writing them. We are always looking for new volunteers so please, contact us if you are interested. Just a few hours per month can help other mamas in a huge way!

Jenn from Monkey Butt Junction

Most Viewed Post: Why I want to Homeschool / Why I Don't Want to HomeschoolPersonal Favorite Post: Hello MorningsPost I Wish More People Saw: Eating Healthy on the Road

Visit Code Name: Mama

Dionna from Code Name: Mama

Most Viewed Post: 32 Natural Remedies for Colds, Congestion, Coughs, and Fevers in Infants (Newborn to 6 Months)Personal Favorite Post: Crying Does Not Equal ManipulationPost I Wish More People Saw: Why Nurse A 4 Year Old?

Laura from WaldenMommy:Life Behind the Red Front Door

Most viewed post: Ten Reasons to Revoke my Natural Parent CardPersonal Favorite Post: The AP'd Child Speaks OutThe Post I Wish More People Would Read: Having A Child With Special Needs...

Jennifer from Hybrid Rasta Mama

Most Viewed Post: 333 Uses for Coconut OilPersonal Favorite Post: You Will Understand When You Are A MotherPost I Wish More People Saw: Constipation In Children and What You Can Do To Help

Lyndsay from ourfeminist{play}school

Most Viewed Post: Potty Learning the Gentle WayPersonal Favourite Post:Gentle Weaning and Play Post I Wish More People Saw: Rape and Attachment Parenting

Abbie from Farmer's Daughter

Most Viewed Post: Maple Cinnamon Swirl BreadPersonal Favorite Post: The Birth Story of David JosephPost I Wish More People Saw: A Farm of My Own

Gretchen from That Mama Gretchen

Most Viewed Post: Crockpot YogurtPersonal Favorite Post: 100 Days OldPost I Wish More People Saw: A Fresh Perspective | Jemma's Beautiful Birth

 

 

Christine from African Babies Don't Cry

Most Viewed Post: I Breastfeed My Toddler For The Nutritional BenefitsPersonal Favorite Post: From Full-Time Formula To Exclusively BreastfedPost I Wish More People Saw: How To Minimise The Chance Of A (Genetically Prone) Child Being Diagnosed With ADHD

Charise from I Thought I Knew Mama

Most Viewed Post: My Misdiagnosed Miscarriage StoryPersonal Favorite Post: A Poem for My Baby GirlPost I Wish More People Saw: How Does Attachment Parenting Foster Independence?

Mandy from Living Peacefully with Children

Most Viewed Post: Attachment Parenting: the Renewed Face of FeminismPersonal Favorite Post: Different Rules for Different FamiliesPost I Wish More People Saw: Introducing: Attachment Parents Get Real!

Amy from Me, Mothering, and Making it All Work

Most Viewed Post: Censored at the Beauty SchoolPersonal Favorite Post: Let Them Have the Last Word: Demonstrating Peace For ChildrenPost I Wish More People Saw: Talents of the Heart EarthMamasWorld.com

Angela from Earth Mamas World

Most Viewed Post: The No 'Poo Method: Homemade Shampoo And ConditionerPersonal Favorite Post: It's Okay...I Actually Enjoy Spending Time With My Kids!Post I Wish More People Saw: Gentle Discipline And Our Family

Cynthia from The Hippie Housewife

Most Viewed Post: Winding Down at Bedtime: Three calming gamesPersonal Favorite Post: While the nights are still preciousPost I Wish More People Saw: Those days don't define you

Fine and Fair Joella from Fine and Fair

Most Viewed Post: Teen Pregnancy: Not Caused by MakeupPersonal Favorite Post: A Letter to my Son: The First of ManyPost I Wish More People Saw: 25 Lessons for my Children

Megan at The Boho Mama

Most Viewed Post: Coconut Oil: Nature's Baby MagicPersonal Favorite Post: When They're OnePost I Wish More People Saw: Using Relaxation and Visualization to Support Breast Milk Supply

Julia from A Little Bit of All of It

Most Viewed Post: 10 Things I'd Like New Moms to KnowPersonal Favorite Post: My Mother BlessingPost I Wish More People Saw: Why Should You Wear Your Baby?

Amy from Anktangle

Most Viewed Post: Growing Sprouted OnionsPersonal Favorite Post: Dear Daniel, (On Discipline and Love)Post I Wish More People Saw: Garden (Time Out) Meditation

 Lauren from Hobo Mama

Most Viewed Post: Where to find cute maternity clothesPersonal Favorite Post: Getting used to having kidsPost I Wish More People Saw: On having two kids & not playing fair

Isil from Smiling like Sunshine

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Jorje from Momma Jorje

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Don't forget to check out Cooking With Coconut Oil and Coconut Oil For Your Skin! You will love my eBooks! I promise!
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