Thursday, November 29, 2012

Jewish Times Article....Awareness Is Key

November 28, 2012 (Baltimore Jewish Times)

Why do bad things happen to good people? This question has been asked since the beginning of time.

Marci and Brian Scher and their twins, Becca and Ian, are among those people. They are good folks, faced with a situation that would be unimaginably difficult for anyone.

Last July, after coping with their son's mysterious and debilitating symptoms for years, they finally received a diagnosis. Ian, 9, is suffering from a condition know as pontocerebellar hypoplasia with spinal muscular atrophy (PCH1A), and he is only the third documented case of the disease in the world. The two other cases are twin girls in Israel, who, like Ian, are of Ashkenazi descent. The disease is incurable and untreatable.

Ian's diagnosis was made after he administered a new genetic test known as the exome sequencing test. The Schers were the 13th family at Kennedy Krieger Institute to have the test. Ian's results showed a mutation on the VRK1 gene, and subsequent tests performed on his parents showed they both carried the same auto-recessive mutation.

The Schers' saga began when the twins were born early, at 34 weeks. As a newborn, Ian had trouble breathing on his own and had microcephaly (an abnormally small head). Despite some developmental delays, he received early intervention services and appeared to be progressing well. Then, in the summer of 2009, Ian, then 6, experienced a sudden and dramatic regression. "He lost all his motor skills," said Marci. But since all medical tests came back normal, a diagnosis could not be made.

Although Ian regained some of his skills, in December 2009, he suffered another regressive episode. This time, his motor function didn't return. In April 2010, the results of a spinal tap convinced his doctor to place him on medication usually prescribed for Parkinson's patients. Ian started to walk a bit, Marci recalled, but soon lost that ability.

One year later, the Schers went to Utah, where they met with a specialist in motor disorders. At that time, Marci and Brian believed Ian was suffering from a dopamine deficiency that was affecting his movement. They were hopeful that with the right treatment, Ian could recover.

Instead, the Schers were told Ian suffered from a type of neuromuscular disorder.

"That's when we learned it was a progressive, non-reversible, untreatable disease," Marci recalled. Ian began using an electric wheelchair in 2010.

To make matters worse, a referral to a pulmonologist let to the discovery that Ian had only 30 percent lung function.

In early 2012, the Schers were contacted by Dr. Gerald Raymond, Ian's longtime neurologist and geneticist, about the exome test.

Leila Jamal, a genetic counselor at Kennedy Krieger Institute, explained the testing process and results to the Schers.

"The situation was devastating," said Jamal. "But the Schers are phenomenal - strong and articulate; they learned everything they could learn. One of the difficulties of tests like this is that finding an answer doesn't mean we have a cure. But there's immense benefit and value to having a diagnosis, because even if there is no cure now, the test can lead to cures in the future."

"When we got our blood drawn for the exome test," Marci remembered, "I knew in my gut, it would show something rare; it wouldn't benefit Ian, but it would benefit the rest of the family. In some ways, getting the diagnosis changed nothing. We had known the prognosis since Utah, but it did take away the unknown, the wondering."

In addition, the Schers' relatives can now decide whether or not to be tested to find out if they are also carriers of the VRK1 mutation.

Most anyone would wonder how the Schers cope with the ongoing trauma of Ian's illness while balancing the parenting of Becca, a typically functioning 9-year-old, their work lives (Marci is assistant to Chizuk Amuno's executive director and Brian is an accountant) and the day-to-day stressors that all of us face. Both Marci and Brian admit they have "had their moments."

Brian said he gets frustrated more easily than Marci.

"But we complement each other. When she gets frustrated, I'm there to pick up the slack...It's just part of our lives. We don't think, we just do," Brian said. "In a way, Ian's almost as active as other boys. He does Cub Scouts and Hebrew school, adaptive sports."

Of course, sometimes the Schers are sad.

"There are times when we're at scouts and I see the other boys running around and I see other boys and their dads, and I feel sad, but I wouldn't give him up for the world...Once you talk to Ian, you're hooked," Brian said.

"Ian wants to walk again and and wonders why he's different," Marci said. "He'll say, 'I used to be able to make a fist,' 'I can't roll over in bed anymore.'"

And they worry about Becca.

"We have to remember she's only 9. We want to give her as much time as possible and give her a childhood, too," Brian said. "I try to make dates for dinner and to go out for ice cream [with her]."

"It's isolating having a child with a disability," Marci said. "You can't just go to a party and have conversations and let the kids go off on their own. You're on duty 24/7, even after bedtime. If Ian's uncomfortable, I have to go in and turn him over, take him to the bathroom. He's getting heavier, so it's hard.

"When we applied for funds for Ian's bath chair, a wheelchair ramp and stairlift, we were told they weren't medically necessary. When we've tried to get help at home, we've been told his condition isn't serious enough, [that] his care is only custodial. Where are the resources for families in this situation?"

"Sometimes, I get angry," added Marci, "but being angry all the time isn't going to help me or us or anyone. It's not going to help make good memories. We just want to give him and Becca all we can."

Sitting around the Scher's family room on a recent afternoon, one could definitely feel the love. There was laughter and gentle teasing. Ian was lying on the sofa, while his family sat around him on the carpet. It was hard to hear his voice due to his lung condition, but Ian was eager to talk with this reporter. His major complaint? He has difficulty sleeping because he is frequently uncomfortable. Otherwise, Ian spoke about the things that make him happy - and there are plenty of them. Ian loves his family, school, his friends and Hebrew school at Chizuk Amuno. His father, said Ian is his "best buddy. We will never break up," he declared. Indeed, Ian exudes sweetness.

Becca was bubbly and charming. Snuggling with her mother, as Marci braided her hair, she shared her worries about her brother. "I worry all the time - especially at times like last December, when Ian was in the hospital. I worried every second and I was only allowed to visit him one time." Becca admitted it is difficult having a brother with special needs. Other kids, she shared, don't understand what it's like. "Sometimes they ask me why he's in a grade lower than me. I say 'I don't want to talk about it.'"

Ian reciprocated his sister's concern. "I worry about Becca too," said Ian. "I made her a get well card when she was sick." And although he experiences a great deal of discomfort, and meets with tremendous adversity, Ian's outlook is remarkably positive. Other than his family, Ian's favorite thing is Spiderman. Recently, the family took a "Make-a-Wish trip where Ian was able to meet his superhero. "I think he was bitten by a spider," said Ian. "He can shoot webs. Spiderman can do everything I want to do."

Saturday, November 10, 2012

Forward, Backwards and Tough Decisions

That's all part of life, at least the life we were given. Forward...the bath chair make a very long story as short as possible....Brian and I found some billing errors on the vendors end; we brought it to the attention of all the vendors concerned and corrections were made along with the vendor resubmitting a claim to Blue Cross Blue Shield of Illinois (we don't have BCBS of Maryland). Well with all the letters from the MD, etc, it was still denied by insurance stating it is a convince item...really. People still do some good things and the vendor informed us they were going to write it the "convince" bath chair we need we can now keep and not have to worry about it. 

Somewhat backwards...after 7 years of being with our wonderful neuro-genetics, we had to say goodbye...our Dr. Raymond is moving onto new things for his career. While we are very happy for him, we are very sad for us. However, he did tell us that it has come at a good time for us, if you can look at it that way. Given the diagnosis of SMA with PCH, he needed to move us on to another neurologists who has more knowledge of SMA and dealing with this heart-retching disease. So we have had our last appointment with Dr. Raymond, said our good-bye, although we know we will be in touch with him and keep him updated on what is going that brings us to some new doctors at Kennedy Krieger's Muscle Clinic. We had our first appointment there a few weeks ago and felt very comfortable with all of them. We are hoping for many more comfortable appointments. 

Tough decisions...this stems from the appointment with the muscle clinic...there were three recommendations made by them. One, to have a feeding tube placed; two, have c-pap changed over to bi-pap; three, have Ian on bi-pap 24 hours a day. The reasons behind all of the recommendations is to help conserve as much energy as possible for Ian. Brian and I have had many conversations with each other, Ian's other doctors in order to decide what we were going to do with these recommendations. One, over the past few years, Brian and I along with most of Ian's doctors have discussed a feeding tube, not as an if he needed one but as when would be the best time for him to get one...knowing he would need one. We have decided that now is the best time...Ian is healthy and holding his own. Brian and I had a nice meeting with Dr. Katz (Ian's GI MD) and he explained everything. Surgery is scheduled for Friday, November 30th...  Two, c-pap being switched over to bi-pap. After another sleep study and conversations with Dr. McGinley and Dr. Escolar, Ian started bi-pap a few days ago. So far, the change has not been a hard one as Ian was already used to the mask and the pressure, so it has just been getting used to two pressures instead of one. Three, bi-pap 24 hours a day. This has been something Brian and I have discussed with Dr. McGinley as well as with each other to really figure out what is best for Ian...we are not moving him onto bi-pap 24 hours a day but will use it during the day if we are home hanging out or if we see Ian needing a some extra help.

Ian has been having a harder time driving his chair lately, we are not sure if it has to do with the joystick or if this is more of the disease progression. There are other types of joysticks which may make it easier for Ian to drive and continue to be independent. We are waiting to find out if his chair is compatible with it...if not...then more decisions. 

The was wonderful and overwhelming. Most of the evening was a blur to me...people I did not expect to be there were there...words are not enough to show how grateful Brian and I for all those who participated in it and made it happen....THANK YOU FROM THE BOTTOM OF OUR HEARTS....Marci, Brian, Becca and Ian....

Wednesday, October 17, 2012

It's Almost Here.....

Thursday, October 25th at 7:00 p.m. at 7936 Starburst Drive, 21208

Come Join Us to Raise money AND have an absolutely fabulously fun time... and get a BUZZZZZZZZZZZZZ (literally)! LOL

It's a HOT HOT HOT ladies night in with a fabulous and fun party presented by Irina Brusilovsky with Slumber Parties and Alana Gray from Thirty-One Gifts. You will experience the latest and greatest in luxurious totes, handbags, purses, lingerie, books, games, massage oils, edible lotions, and love enhancement products.
Every Thirty-One style was designed with you in mind. They’re all solutions that make your life a little easier. Whether it’s style, organization, the perfect giftable item — or a little bit of everything — you’ve come to the right place!

From totes or purses you can wear while you’re out and about, thermals to help you transport food and drinks to a party, or organizational items to help you keep your house neat and tidy, Thirty-One has a solution! Thirty-One will have you believing in styles that fit you perfectly. If you would like to order online here is the direct link:
Slumber Parties carries something for everyone… something for you, your lover, and your 90 year old grandmother. Get ready to laugh and learn some new tricks as Irina tastefully presents all of the goodies. Irina can easily get your shopping done that night for birthdays, anniversaries, and beyond. If you would like to place an order but unable to attend, check out, and then give Irina a call to place your order.

Don't forget that a portion of your sales will go towards covering expenses for Ian Scher. For more information on what Ian is going through please check out his blog at

Can't wait to see you soon!
Just a little information about Slumber Parties:

1. Your order will be taken in a private ordering room and no one will know what you leave with! Irina is fully stocked with Lotions, Lingerie, lounge wear and things that buzz in the night! Batteries are not included; do you know where the nearest drug store is?
2. PLEASE Bring a female friend or two. For every friend you bring, you will receive an extra raffle ticket for the opening raffle and win wonderful prizes all night long. Bring 3 friends and receive a FREE gift!
3. All Ladies must be over the age of 18. Leave the men, children and babies at home. This is the ONE adult ladies' party you will not want to miss!
4. There will be snacks, drinks and games.
5. Irina is a traveling store… she comes with over $5000 in stock and lingerie… so you'll be able to bring home most of your goodies the night of the party. She takes cash, check with ID, and credit/debit cards… but if you pay for at least $50 of your order in cash… you'll get a special free gift!
This is not an over night stay just a few hours of FUN so you'll be home in plenty of time to deal with everything you need to for the next day :)
Don't forget to RSVP.
Please come and join us to pamper yourself and any good friends you bring and maybe meet some new ones too!

If you are unable to attend because of vacations or other outings…Hello?!? Irina has the best vacation items on the planet that you WILL want to bring with you. See her website to view her entire product line. Irina is Fully stocked so place those orders, before my party, with her directly and you can save on shipping and get any sales she's currently running. I will still get credit!

Aaaannnd… If you are going to miss the Fun you should definitely book a party of your own – there are tips and tricks that you will not want to miss and I will still get a special bonus!
Our Classy Sassy Consultant is:
Irina Brusilovsky
Or look her up on Facebook at

Friday, September 14, 2012

New "Normal" Again

The past few weeks have brought some changes to "our normal". School started; Becca and Ian both have new teachers.  All of us were a little anxious about this....but they have all been wonderful.  The week before school started I had a meeting with all of the Forest and Ocean team teachers, to give a medical update to those teachers who had Becca and/or Ian last year and the new teachers all the information they needed in order to teach/care for both kids. Some good ideas were put into place from this meeting and everyone was excited for the year to start the following Monday. The 1st three weeks have been great for the kids.

Becca is having a hard time adjusting to the "strictness" of the we have told her, she will have to get used to and adjust. We will continue to work with her....

Ian is doing well and has been adjusting nicely. All of the staff he has at school is the same, except for his teacher. He is enjoying learning from Miss B.

Another change for us this school year, we the loss of our Stephanie...she has gone back to school to become a dental hygienists. From her messages, she is quite busy. We started using Play Keepers for the days Stephanie was with us. That has been going well, just some getting used to for all of us. I am hoping once the High Holy Days are over and work has calmed down a bit for me, more normalcy will come into play with our evenings.

To add to our normal, another piece of equipment has entered our home.
This is Ian's new C-Pap is taking some adjusting on all of our parts, especially Ian. The first few nights he used it for about an hour and a half each. The beginning of this week I spoke with the wonderful nurse from our pulmonary office, her advice along with the advice of two other wonderful mom's whose kids use Bi-Pap machines, have made the last few nights a little easier. As with everything, time will make the use of the C-Pap easier and it will just be another piece of equipment in our lives.

With winter coming and flu season upon us, here are some ways to protect yourself and those you love from exposure to influenza, including:

•Educate family members and roommates about the heightened risk of seasonal and H1N1 influenza for those with neuromuscular disease, and the importance of staying away from others who are experiencing flulike symptoms.

•Promote good hand hygiene among everyone in your home, which means washing hands with soap and water for at least 20 seconds (the time it takes to sing “Happy Birthday” twice), especially after coughing or sneezing. Alcohol-based hand sanitizers containing at least 60 percent alcohol also are effective.

•Encourage everyone in your home to practice respiratory etiquette by covering coughs and sneezes with tissues or with your arm. Dispose of tissues in a waste receptacle after use.

•Among your roommates and/or immediate family members, stress the importance of not sharing utensils and drinking cups, and encourage them to avoid touching their faces, especially after handling shared items such as telephones or remote controls.

•Educate yourself about symptoms of the flu — fever, cough, sore throat, body aches, chills and fatigue. Diarrhea and vomiting also may be experienced. Contact your physician as soon as possible if you develop flulike symptoms.

•Visit the CDC’s website and for additional tips and recommendations.

This Sunday night starts Rosh Hashanah...L'Shana Tova -- "To a Sweet Year" to all. Healthy Year for all.

Wednesday, September 12, 2012

Benefit Thirty-One and Slumber Party for Ian

There are not enough words to say thank you in advance to Irina, Alana and Susan for putting this together to help Brian and I continue to help Ian...his medical expenses continue to grow as his condition continues to change...
Come Join Us to Raise money AND have an absolutely fabulously fun time... and get a BUZZZZZZZZZZZZZ (literally)! LOL  
When:      Thursday, October 25, 2012
Time:       7:00pm
Where:     7936 Starburst Drive, 21208

It's a HOT HOT HOT ladies night in with a fabulous and fun party presented by Irina Brusilovsky with Slumber Parties and Alana Gray from Thirty-One Gifts. You will experience the latest and greatest in luxurious totes, handbags, purses, lingerie, books, games, massage oils, edible lotions, and love enhancement products.

Every Thirty-One style was designed with you in mind. They’re all solutions that make your life a little easier. Whether it’s style, organization, the perfect giftable item — or a little bit of everything — you’ve come to the right place!

From totes or purses you can wear while you’re out and about, thermals to help you transport food and drinks to a party, or organizational items to help you keep your house neat and tidy, Thirty-One has a solution! Thirty-One will have you beliving in styles that fit you perfectly.

Slumber Parties carries something for everyone… something for you, your lover, and your 90 year old grandmother. Get ready to laugh and learn some new tricks as Irina tastefully presents all of the goodies. Irina can easily get your shopping done that night for birthdays, anniversaries, and beyond.

Don't forget that a portion of your sales will go towards covering expenses for Ian Scher. 
Can't wait to see you soon!

If you can't come that's okay you can still order online or thru the catalog...more information to follow on that in October. Please let me know if you are interested in attending so we can add you to the count....if you don't want to post on here then email me to let me know....thank you all...

The love and support we have received over the years has helped us to continue to help us thru the journey to our constantly changing normal.

Thursday, September 6, 2012

One of the best feelings!

One of the best feelings, going downstairs in the morning; Ian's  laying on the sofa watching TV. I give him a huge hug, he says "I love you".  I say "And I love you". Ian turns to me and says, "No Mommy I love you more".

Sunday, August 26, 2012


Okay most of the time I don't post all the the funny things Ian does....he really does not realize how funny he I am going to start trying to remember some of the things he does....

We are sitting watching TV and he has decided he wants to scare Brian...this is how it goes:

Ian "Daddy?" "Oh Daddy?"
Brian "Yes?"
Brian just looks at what are you doing?
Ian "Daddy?" "Oh Daddy?"
Brian "Yes?"
Ian "AAAHHH" "I'm trying to scare you, so scream like you mean it."
Brian "OK"
Brian screams like he means it and Ian has the best grin on his face...

Saturday, August 25, 2012

The Seven Habits of Highly Effective People Applied to Special Need Parents

I was reading an article on Stephen Covey's "The Seven Habits of Highly Effective People" applied to special needs parents and found it interesting.

Be Proactive
This should speak volumes to parents with special needs children. Be proactive; recognize that you are "response-able" to help make a better life for your child. It is most definite that you will probably have to do things outside of the normal. Translation: think outside the box.

Begin with the end in mind.
This is based on imagination. What kind of life do you envision for your child as an adult? Imagine them going to college, living independently, having a social life. Imagine a great, world changing....and then see every detail through to the end.

Put first things first.
The third habit reminds people that "to live a more balanced existence, you have to recognize that not doing everything that comes along is okay." Life management -- it is okay to not do everything that comes along. Set priorities for the "day to day" and long term, so you can live a more balanced life.

Think win-win.
The phrase "win-win" may be ubiquitous today, but it's likely popularity came from Covey's fourth habit, which means "agreements or solutions are mutually beneficial and satisfying." Think "Win-Win" every time you are negotiating. Which can be almost daily when advocating on your child's behalf. Keep the "win-win" habit in mind when working towards solutions or agreements that will be both mutually beneficial and satisfying.

Seek first to understand, then to be understood.
Seek first to understand, then to be understood. This habit can be used in all areas of our children's lives.  We need to become good listeners to our children, which may require more intent observation to their behaviors, schedules and activities in order to understand and respond appropriately, not just respond! This habit encourages helping our children to be understood better in their daily lives.

"Synergize" assemble and build a winning and diverse team of all-stars Choose, not only, the right doctors, therapists, teachers, aides, tutors, and coaches, but also, family and friends that will be effective in helping your child reach their potential.

Sharpen the saw

Sharpen the are your child's best advocate. You must find ways to preserve, enhance and renew yourself on a daily basis. Without you where will your child be?

Some of these are definitely easier then others...some come more naturally then others...but then isn't that just part of life as well as any relationship one may have. I am going to keep these habits in mind as much as possible as I go about my days.  

Sunday, August 19, 2012

Week of MD appointments....

That is what last week was....week of MD appointments. We started off the week with the orthopedists. Brian and I were very surprised to learn that Ian's scoliosis had not changed. We both thought it had. We were not surprised to learn that Ian needed a new back brace, it had been getting tighter around his stomach. After his appointment, Brian decided to drive over to the orthopedic appliance store (we could not remember the name of it so driving over was the best we could do) and at least figured we could make an appointment then if they could not fit him in.  We got lucky they were able to fit him in....wait and here is the pattern he picked for his new TLSO (thoraco-lumbo-sacral-orthosis). 
This one is better compared to the one he currently has....
I guess Ian decided to tone it down a little we wait and go back in a few weeks to get fitted.

Our next appointment was a with a urologists. We were not sure what to expect with this appointment, however, it went well. We were basically looking for different ways to take Ian to the bathroom. For those of you who know him....he says "I am a boy, I stand to go." Well that is not so easy to do all of the time. So what we were told...pretty much to let him stand, try to get him to sit or use a urinal. So we will continue to adapt as best as we can with this given Ian's determination to "stand".

Next was the pulmonologist; this appointment is the one that is going to bring the most changes to our normal. We got his sleep study results back from a few weeks ago....Ian has mild sleep apnea. We knew this would eventually happen and that Ian would need to start either BiPap or CPap...we should know by the end of the week which one he will be on. He will need to be on this when he sleeps. While we were at the MD, the fitted Ian for the mask he will need for the machine. Another sleep study will need to be done in order to determine the parameters the machine will be on....this appointment was not a surprise for us. We learned sometime ago that Ian would eventually end up on either one of these machines for respiratory support, we just did not know when.

So now we wait to get the new TLSO and to find out if BiPap or CPap will be the winner.

One more week of summer vacation and the kids go back to school, we are all ready for the school routine to come back into our home.

Thursday, August 16, 2012

Casey Cares and The Ravens

Casey Cares Foundation....and the Baltimore Ravens.....

Waiting for the players to come say hi and sign the football and flag we brought with us.             

 Just some of the players who came over to day hi, sign our stuff and take pictures with us.

 Even Brian had to get one taken.
 Meet Casey from Casey Cares....she is wonderful...
And here is Becca with the football and all the signatures....and tomorrow night we get to go see the Ravens play Detroit Lions....bring it on....

Bath Chair Update

Many thanks to Tara for starting the petition, to everyone who signed it, and for all the wonderful support from near and what is going on with the bath make a long story short...when we first ordered a bath chair for Ian we ordered one which could also be used as a transfer chair, however, with this chair in the bathroom, we could not move around to bath Ian...and he was not even in the chair. So we were told by the vendor they would take care of it and order us a chair (not one to be used as a transfer chair as well). With the whole denial process going on Brian and I started to wonder how the bath chair we had cost over $2,000...we did a little bit of research on line and realized we were being charged for the original bath chair. We learned some other interesting things which have been resolved with the vendor and BCBS...the vendor is now submitting a claim to BCBS for the chair we do have....we are still expecting for the chair to be denied as it is considered a convenience item. So the bath chair saga continues but until we get the denial for the correct chair we have to wait...

Tuesday, August 7, 2012


I was going through some paperwork and found this...I wanted to share it.


My son, Jacob, believes that Disneyland is the happiest place on earth. For my daughter, Shira, it may or may not be a happy place, but Disneyland is certainly the place where she is happiest to be Jacob's sister. Because Jacob is autistic, we don't have to wait in line to enjoy any of the rides. Instead, we flash his IEP (Independent Education Plan, given by the public school system and attesting to his condition), Disney bestows a VIP pass on Jacob, we skip the line and get stared at by all the other guests. As we breeze onto the ride, Shira beaming, I routinely overhear people mumbling,

"What's so special about them?"
What is so special indeed?

In the language of our age, our son is "special" and our daughter is "typical." Ten years earlier, he would have been "disabled" and she, "normal." A decade passes, the compass shifts, the language moves. But having a special child often doesn't feel special. It feels hard, burdensome, relentless, a joke. When our twins were born, we had dreams of them as inseparable, a playmate always at the ready. We dreamed of their always having an intense connection with someone who would understand them on an intuitive level. Those dreams have withered, scorched in an inferno of special therapies, medications, procedures, and behaviors. Dare I cling to the hope that Shira will feel a connection to Jacob when they are grown? Will she make him a loving presence in her heart and her life?

Jacob is "special," and that will be Shira's burden throughout her life. Should any child have to mature in the shadow of that additional responsibility?  Jacob may be special, but Shira isn't typical, which is fortunate; she can't afford to be.
  • At three years old, Shira wanted to join me in greeting congregants arriving at Rosh Ha-Shanah services. I told her she could pick her own clothes, so she picked two items that expressed the fullness of her own unique personality: her Cinderella ballroom gown, and her arba knafot underneath (complete with tzitzit hanging out below). Thus attired, she reached up and shook hundreds of hands, wishing them a smiling "Shanah Tovah!" That is no typical child.
  • As a child of four, Shira found out that people die. During one of several conversations about mortality, Shira informed me that, when the time came, she would hold my hand and die with me. When I told her that I hoped she would live for many, many years after I did, she burst into tears. "Abba, I don't want to live if you aren't living!" That's not typical either.
  • At age seven, still a white belt in karate, Shira's instructor gave her a wooden board by mistake (only the higher belts get their own boards.) When her teacher tried to retrieve it, Shira was so adamant that he relented. Shira smashed it in two with her first kick.
Shira knows who she is, feels passionately, and lives without restraint. I can't help but suspect that, in part, she is so special because she has a "special" brother.

Once Elana (my wife/her mother) was reading Shira Mori's Story, a wonderful book about an autistic boy written by his wise eleven-year-old brother. Shira began to cry when we got to the parent's loving decision to place their autistic child with a foster family who could provide him with the care he needed. "We won't ever do that to Jacob, we will?" She cried, horrified at the possibility. We explained that each family was different, and had different needs. Jacob would stay with us.

Shira, in the middle of nothing in particular, announces that it is unfair that she has an autistic brother when none of her friends do. She plugs both ears when Jacob makes his nonsense sounds, his "silly talk." She rolls her eyes in disgust when her emerges from the bathroom with his pants still around his ankles. She deliberately picks the video that she knows will make him scream, cry, and fling himself to the ground.

But Shira is also the one attracted to friends who are distinctive and unusual children. She is the sister who hands Jacob half her french fries, without his asking, because she knows he likes them. Or her leftover brownies, Shira is the first to try to assure him that the hotel room is safe and secure, when it feels unknown and threatening to him. And if we discuss some future plan without mentioning Jacob, Shira is the one to insist, "Jacob too!"

Raising a child with special needs is challenge enough. But raising that child's sibling is a task requiring no less consciousness, planning, and consideration. In the press of an autistic meltdown, Shira's more subtle needs can easily appear less pressing. Because she is more verbal, her acting like a seven-year-old feels petulance when Jacob's problems rise to the surface. And, finally, because Jacob requires constant attention and assistance, it's easy to let Shira fade into the background. Her very sweetness, understanding, and sympathy make it easier to give her short shrift.

For all that, it is also true that having to make room for an autistic brother, mentally, emotionally, and in the prosaic details of her family, Shira has developed a depth and a caring that takes my breath away. Shira is a miracle in our lives. And like all miracles, she defies simple understanding, eludes neat categorization. There is no one quite like her. It turns out that she is, in her own way, special too. And isn't that typical?

(Rabbi Bradley Shavit Artson is the Dean of the Ziegler School of Rabbinic Studies at American Jewish University, where he is Vice President. He is the author of The Bedside Torah: Wisdom, Dreams, & Visions and Jewish Answers to Real-Life Questions.)

Sunday, August 5, 2012

Some recent pictures ...

Here are some shots that I love and wanted to share. I hope you enjoy them as much as I do.

Sunday, July 29, 2012

Petition to help get Ian's Bath Chair covered

One of Ian's friends parents started this to help get Ian's shower chair covered...thanks Tara Webb. Please sign and pass it along...the more signatures we have the better.

Marci, Brian, Becca and Ian...

Saturday, July 28, 2012

The power of social media....posting on Facebook "Looking for a way for Ian to ride a motorcycle....any ideas, suggestions, contacts...." many people posted giving suggestions on ideas....thank you all. The generosity of people still amazes me...Mindy, Louis and Dean; along with everyone else who came out to ride with us today...thank you for helping Ian ride a motorcycle....the pictures say it all...
Waving hi...look at we come.
Ian learning the rules from Mr. Louis about riding in the sidecar.

Getting Ian all strapped in and making sure he is secure.

 To the left, Ian has his helmet on and is getting ready to go.

Below, Brian has his helmet on and is getting ready to go as well along with all the others who came to join us for the ride.

Look at the wonderful views we had on the ride.

Not sure how anyone could actually fall asleep which on a motorcycle ride, but leave it to Ian to certainly figure it out.  Below, Brian looking back and signaling that Ian is asleep.
Taking a break for all the other riders to stretch their legs...

After a few minutes, it was time for all to get back on their helmets and bikes and hit the roads again....

All good things must come to an end....but wait....there was one more thing....

Becca and her friend Sydney had to go for their ride too...around the block....

A group shot to end a wonderful day.....thank you all. Putting Ian to bed this evening, I asked him what the best part of today was...he responded "riding the cycle".

Tuesday, July 24, 2012

A New Normal...Diagnosis

Imagine one day everything being normal...whatever your normal is. Then in some way in a blink of an eye your normal changes...what will be your new normal?  July 4th weekend of 2009 our normal changed....and has continued to change over the past 3 years...July 2, 2012 our normal has changed and we will again look for our new normal. Ian is NO longer undiagnosed.....

March 2012, Brian, Becca, Ian and I continued our journey with Dr. Raymond and Lelia (our new and wonderful genetic counselor)...we were the 13th family through Kennedy Krieger Institute to have a whole genome sequencing test through Ambry Genetics. This test is different from anything we have ever had done, actually different then most people have ever had done. To explain it very simply...if you are looking at an aerial view of a map whole genome sequencing looks at the street views...traditional genetic testing looks at the state view of the aerial map or only 1 to a few specific genes at a time. Whole genome sequencing can look at 80% of your protein genes...most disease causing mutations are found in the proteins genes.

Exactly 3 years after Ian started major disease progression ...July 2, 2012; we got the call; the results of the whole genome sequencing were back and showed a VRK1 mutation. Exactly what does this mean; for one we now know what is causing all of Ian’s regression. Another thing we know, Ian is the 3rd documented case in the world; in 2009, the same mutation Ian has was reported in 2 young girls from an Ashkenazi Jewish family; many of the same neurological difficulties Ian demonstrates these girls had. VRK1 appears to be important for the survival of motor neurons (responsible for movement) and for the development and maintenance of a structure in the brain called the cerebellum. Spinal Muscular Atrophy [SMA] with Pontocerebellar Hypoplasia [PCH] Is Caused by a Mutation in the VRK1 this time due to the rarity of VRK1; its role in processing and transmitting information by electrical and chemical signaling is very limited.  

To be clear; Ian does not have SMA or PCH, yet, he does have characteristics of both. Without the clinical diagnostic exome test, we would still be undiagnosed...according to Dr. would have had to be a genius to figure this out. The plan is for Ian to be treated as if he has SMA2...we actually have been doing all of what this entails except for one thing, we are waiting for MD appointments for our normal to continue changing.

As we adjust to our new normal....remember, Ian is imperfectly perfect. He is affectionate, brave, charming, compassionate, considerate, courageous, curious, dependable, determined, frustrated, funny, gentle, giving, imaginative, intelligent, lonely, loving, lucky, mischievous, picky, polite, quiet, rambunctious, respectful, scared, sensitive, silly, sincere, smart, sweet, talkative, terrified, thankful, warm-hearted, and wise. Brian and I resolved early on that we would not allow Ian — our beautiful, imperfectly perfect child — to be “just” a statistic. We want his life to have meaning and make a positive difference in this world. We will do whatever it takes to give him everything and anything he needs and deserves, just like we do for Becca.

As it has been said “Man plans, G-d laughs.” As I write this, a person, not a statistic, I know that, this time, G-d gave me the gift—along with Brian and Becca and all those who are a part of our village - the gift of laughing with Him.”

Saturday, July 21, 2012

Camp Oest 7/11 - 7/14 2012

Well it has been a week now since Ian and I went to cub scout camp called Camp Oest.  Oest, is the BSA Nationally accredited resident Cub Scout summer camp of the Baltimore Area Council, Boy Scouts of America.  As opposed to Day Camps, Camp Oest is a complete outdoor program, activities that included Nature, Shooting Sports (Archery and BB Shooting), Handi Craft, Boating and Pool. 

Ian had a great time experiencing everything they had to offer at Camp Oest.  The staff there was amazing and assisted in anything and everything Ian needed help with.  I can't begin to explain how much fun we had there together and sharing this experience with him was incredible as well. 

Here are some pictures of our activities during the four day session.

The staff set us up with a room in the Admin Building.  Mainly because of needing the electric outlets for Ian's cough assist and chest PT vest.  They even put up a little sign on the door that clearly stated Ian's Quarters.

First evening welcoming camp fire.  This thing was HUGE as you can see.

 I think these two pictures were Ian's most favorite activities of all during Camp Oest.  The picture to the left shows two staff members assisting Ian in his archery activity.  Whereas, the picture below and to the right shows Ian preparing himself to do some BB shooting. 

So many different activities, so many pictures and so much to say about the entire experience that I could just go on and on with pictures and captions.  Besides the ones above, Ian and I went boating with our pack one day.  There we played a game of capture the flag which turned in to more of the game of splash as much as possible.  After we got back to the dock and out of the boat, Ian looked at me and said, "Daddy you were smart for taking your shirt off."  Because we got drenched.  He also helped the pack light a camp fire by using a long stick with some twine wrapped on the end that one of the staff members made for him so he could be involved.  

Again, I can't say enough about the whole experience...from the staff at Oest, to the other members of Pack 143.....this experience with Ian....will last forever and a day.

Saturday, July 7, 2012


Ian just had to have this blanket when we were at Toys r Us this afternoon. And why would Brian and I say no...we know he is going to use it all the time. It already has been told it is going to Camp Oest with the boys next week.

Monday, July 2, 2012

January 8, 2012

Weekend was a hit...Ian spent all day inside on Saturday resting, did a little bit of reading...played Candy Land and started to play Sorry with Brian and I...Becca was at a play date (thanks Leslie and Michelle). He did great with both games and even told us when he needed to stop to rest. Saturday night we went out to dinner and he did well then also.
Today, he went back to Hebrew School and did great. Lasted all 3 hours with out saying he needed to come home. You could tell afterwards he was a little tired but he pushed through some until we could get him home around 1:20. Then he told me he needed his cough assist...I love that he is getting more proactive with telling us what he needs. He rested a little bit and then after dinner reminded Brian and I, numerous times, that we needed to finish our Sorry game...and you got it he won.
Take a look at the photos and the wonderful poster Ms. Cathy, Mr. Jim, Joey and Jillian made for Ian..

So happy to hear Ian is doing better and becoming stronger. --Shara Freeman

Great to hear this!! I'm so glad Ian is doing so well and you guys are getting back to normal! --Audrey Kline

This is great! So glad to hear that Ian is doing so well. Marci, I'm sorry I didn't get to stop by on Friday. I'll try tomorrow. -- jamie leboe

Love weekends like that. We love Sorry over here....we have the Disney version and we play it all the time. Glad to hear Ian is feeling better. --Maureen Herban

I'm so glad things are getting back to normal with you guys. And what's with the kids beating us at these games?? Logan got me at Scrabble AND Yahtzee last week! --Elena French

This is wonderful news!Glad to hear that Ian made it through Hebrew school. Keep up the good work! --Tamara Flax

January 6, 2012

Well the week has been good, Ian continues to work hard to gain his strength back. He went to the doctor and was given the go ahead to go back to school...when he was up to it or we thought he was up to it. He spent most of this week home with many different people. He watched TV, played games, napped, even stood in his stander for a little bit. This week we celebrated Pop's 70th birthday and it was great to have all of his kids around him as he blew out the candles...I did make everyone use hand sanitizer as they walked into the house...
For two hours today, everyone was back to their old got it, Ian went to school. He did great, lots of people were very happy to see him and he got lots of hugs. After 2 hours, he told his teacher that he was very tired and wanted to go home...glad he can advocate for himself. We will continue to work on him getting stronger, he will go to Hebrew school on Sunday and back to school on is for it being more then 2 hours but we will take what we can get.
Everyone enjoy the weekend.

good for him and for you. Glad some of the routines are getting back. --Annelise Sullivan

So glad Ian is back with family and friends!
Love, Miriam Foss

Glad to hear of the improvement! Hang in there! Jenny & Andy Dansicker

Yay! Wonderful news. --Melissa Willen  

So happy to hear such great news! --Stacy Lunenfeld

Good news! --Tamara Flax

That's great news!! Txs for the update. --Claudia Gonzalez

January 2, 2012

It's hard to believe that kids go back to school tomorrow after winter you all know, we did not spend winter break together but we did get go bring in the New Year together and that was wonderful. Becca and Ian were happy to see each other...gave each other the biggests hug I have seen them give each other in a very long time. They told each other how much they missed each other and loved each other...we will hold that one dear as who knows when it will happen again. Sunday, we just relaxed around the house for the most part. My parents came over to see dad, "Pop", had been recovering from his own stuff and his MD's would not let him come to the hosptial to see Ian....this was very hard on both of yesterday, Sunday, Jan. 1st was the 1st time they had seen each other since Ian started getting sick and ended up in Hopkins. It was another great reunion. The two of them were both back up to their normal stuff...
Sunday afternoon, Becca and I went to my sisters for our family Hanukah was good to be out and about even if it was not all of us. Then Becca and I came home, the 4 of us watched the Ravens game...way to go...
Today, have been another quite day. Ian is making good progress...he has been sitting in his wheel chair...even drove himself around the house a little bit, stood in his stander for a little bit (watching Diary of a Whimpy Kid and started dancing to the music). He has been eating well (for the most part) and playing on his mobigo. We even started doing some of his missed school work.
Tomorrow, Becca will go back to school, Brian will go to work and Ian and I will stay home. I plan on making lots of phone calls to doctors to make appointments and try to get him back into physical/occupational therapy an extra day this week. Just continuing to take it one day at a time and working with him as well as the whole family to get back to life.
Have a happy and healthy new year everyone...more to come on our superhero "Ian."

I'm so glad Ian's home! Tell him that Isaac and I send our love:) --Abigail Woloff

We are always here for you...Love you guys..Alison Pascucci Sapperstein  

Call me when you get a chance! Tell Ian hello and give him a big hug from me. Trish Redding

Happy New Year Ian! You are a real trooper! The class cannot wait to see you! You will have two new classmates when you return- Jaila whom you "met" on the video and Damon. Nichele Arruda

glad all is going well. I want both of you to know that I really think you are the greatest.
Love, Aunt Leslie  

So glad Ian is home and back with the ones he loves so much.
Happy and Healthy 2012!
Love, Miriam Foss  

So very happy Ian is doing so well. Great way to start the new year. Keep up the great work. --Susan Ritmiller\\

lcome Home, Ian! So glad you are all back together again at home. We look forward to seeing you at Chizuk in the very near future!
Marsha Yoffe

great news!
love Jenny Baker

Hi everyone........a happy and a healthy New Year to good to hear that Ian is home with the rest of you and that he is doing's wonderful to see what a happy and loving family you have ....enjoy the new year!, Uncle Bruce

Welcome home! I'm happy to hear that Ian is home. One day at a time! --Tamara Flax

December 31, 2011; Saturday

Happy New Year to all. We wanted to wish everyone a very happy and healthy 2012. For us we will be starting 2012 off all under one roof, yup...we are waiting for the PICC line to be pulled and the final discharge orders to be written and then we are out of here...

We will still need some time to recover at home, after all laying in bed for 12 days can really be tiring..but we are going to start off slow and work our way back into the world and our normal routine...

Happy and Healthy to all and thank you for all of the kind words and support over the last few weeks....more to come on our recovery at home.

We are so happy Ian is going home!!! Happy new year to you all and let's definitely set up a time Becca can come over to play with Olivia. Take good care and see you soon.
Love, Michelle Clay

HAPPY NEW YEAR to you all may it bring health and happiness. -Ann Gorton

Hey Guys. I am glad to hear you are all home. I'd like to send some food over. Let me know if you want breakfast platter, lunch or dinner and your address/telephone number. Thinking of you. Love, Julie, Peter and Gussie Belt

I'm so thrilled for all of you! It is a Happy New Year. --Trish Redding

We are so happy to hear that you will be starting this new year off together at home. Good luck to you all and may 2012 be filled with happy memories.
Andy & Jenny Dansicker

So happy for you guys. Hoping this is just the beginning of good news for you as we head into the new year. --Cheryl Mendicino 

Congratulations! What a great way to start the year. --Annelise Sullivan

YEAH! Happy Healthy New Year! --Lynne Lichtig

what wonderful news! Great way to star the year!
Lots of love, Jenny Baker

YEAH!!!!! Happy New Year guys! Great job IAN! You gave mommy, daddy, and Becca a GREAT New Years Eve gift! Have a happy and healthy year guys!
Scot, Connie, Rylee, and Grant Lippenholz

Wishing all of you a happy, HEALTHY 2012! Glad you will be under one roof! --Miriam Golob 

I am so happy to hear this!!! I know Ian must be so excited to get back to his house and his sister!!! Happy New Year! --Jodi Postol

Hooray!!!!! So happy that Ian is being discharged! He is one tough little guy! Please give him a big hug from me. Best wishes for healthy and happy new year! --Kathy McCormick Gray

So happy for all of you! HAPPY AND HEALTHY NEW YEAR TO YOU!!!!! --Leslie Hollins

So happy for all of you! HAPPY AND HEALTHY NEW YEAR TO YOU!!!!! --Claudia Gonzalez

Happy New Year, Scher family! --Elena French

Very happy to hear that! Happy & HEALTHY New Year to you all!  --Shara Freeman

I'm happy to hear that Ian is headed home! Happy and a healthy new year to your entire family! --Tamara Flax

Fantastic news! So glad the four of you get to start 2012 together! --Karen Maimone

So happy for you, here's to a HEAtHY and Happy New Year!!!! --Stephanie Weinstein

What a great New Year's surprise! I am glad to here you are all getting to spend the night together! --Jenn Frisch

So glad Ian is going home! Happy and Healthy 2012 to all. With love, Miriam Foss

So happy for you! Good wishes for the New Year! --Carol Zika  

Yes I'm so happy! Happy new year guys :) see you soon. --stephanie rabinowitz

Mazel Tov and Happy New year to all of you!!! :) --Heather Schwartzman Hackerman

Yay!!!!! Happy new year! --Bonnie Goldberg

That sounds wonderful.....I bet Ian will be happy to see his own bed. Only happiness and good health to you all in 2012. --Maureen Herban  

Such great news!! Happy New Year! --Stacy Lunenfeld

What a great start to the year! I'm so happy that you will all get to be home together. Best wishes as always!
Love, Alyssa Postman