Wednesday, December 24, 2014

Merry Christmas 2014

It's definitely been a challenge to be in the Christmas spirit this year, but I have a very excited 10 year old who is still excited for Santa. He even asked me what cookies we should leave out at 4 a.m. this morning. So much will be different next year, so for the next 2 days I will be jolly, and enjoy Christmas through the eyes of my baby who still believes in the magic of Christmas. Merry Christmas everyone!

 Joey's 1st Christmas

Sunday, October 19, 2014

Happy 10th Birthday

Happy 10th Birthday to my sweet little pepper, Joey! My toughest boss, my most important teacher, my constant companion, and the reason I live this life. I wished for you for so long before I was blessed with you and that's the reason I get so emotional as the time seems to be flying by. Double're really not my baby anymore. I am so proud of the young man you are becoming. We've been through a lot, me and you. I can't promise that the journey will always be's been really hard at times...but I can guarantee that I will always be by your side, as long as I am on this earth. "You are the best thing that's ever been mine." I love you! (And yes, I make him read this).

Thursday, September 11, 2014

6 years ago today

It's hard to believe that 6 years ago today, my sweet little pepper was diagnosed with ASD. What a journey we have been on together. Sometimes, it's hard to look back on how far we've come. As much as I want to relive his time as a baby, there are certain moments, days, even months that I would rather skip. The very talkative young man that stands as high as my shoulder now, used to be a quiet, frustrated, little boy, living in a world I wasn't allowed to be a part of. The boy who runs to hug me used to never want to be touched. I am lucky that he is present in our lives and enjoying so many things kids his age enjoy. My littlest soul mate has taught me the biggest life lessons. And I am forever grateful. #tbt September 2008

Sunday, September 7, 2014

Grandparents Day

Happy Grandparents Day to all the grandparents out there and to two special ones, Neems and Gramps! Growing up without grandparents, it is very important to me that Joey have a relationship with my parents. I am fortunate that they live a light away. They have been witness to the highs and lows in my little man's life and provided support, unconditional love, and a home away from home, full of tasty snacks, life lessons, and lots of belly laughs. Happy (almost) 10 years of being Grandparents. Here's to (at least) 30 more!

Tuesday, May 27, 2014

When is the right time to tell your child he has Autism?

Don't ask me because I haven't had the conversation with Joey yet. I've been told by colleagues that I should and I've even started the conversation when I thought it was a good time, such as when he spoke about having a hard time making friends. But he told me he didn't want to talk about it anymore and I respected his wishes.

Here is a great article with some tips on when and how to start that conversation.


Your child has autism. How (and when) do you tell him?

Max Burkholder, left, plays a teen with Asperger syndrome on NBC's "Parenthood." A 2011 episode explored how his parents talked to him about his diagnosis.(Jordin Althaus/NBC)
Max Burkholder, left, plays a teen with Asperger syndrome on NBC’s “Parenthood.” A 2011 episode explored how his parents talked to him about his diagnosis.
(Jordin Althaus/NBC)

It’s a conversation that requires  more thought and planning than talks about sex, money, religion or drugs. For parents of a child who has an autism spectrum disorder, discussing what makes him different and why is a delicate matter.

When do you need to have the talk, and how do you do it so your child comes away feeling good about himself (and doesn’t start using it as an excuse for every little thing he doesn’t want to do)?

NBC’s “Parenthood” tackled this beautifully in a 2011 episode called “Qualities and Difficulties.”
After Max, who has Asperger syndrome, overhears his father and uncle talking (okay, shouting)
about his diagnosis, his parents Adam and Kristina, seek advice from a therapist on how to discuss it with Max. The answer? Emphasize his strengths and talk about how, just like anyone else, he has challenges too:

Link for Parenthood clip:

I recently spoke with Jim Ball, the executive chairman of the National Board for the Autism Society, and Amy Keefer, a clinical psychologist at Kennedy Krieger Institute’s Center for Autism and Related Disorders. They agreed with the approach advocated in the show: Emphasize that everyone, every single person, is good at some things and struggles with others.

“Most families aren’t uncomfortable with having the talk, they just question when to do it and struggle with whether he or she has to know,” Ball said. “For a lot of our individuals, they see the world differently and they just go about their business, so why throw a wrench in it? That’s just how they see the world. It’s more about should I or shouldn’t I, as opposed to being afraid.”

It also helps to remember that even if you are really nervous about the conversation, most kids have either a neutral or a positive response to the news, Keefer said, and go about their day after the talk.

Sunday, May 11, 2014

Mother's Day

Twelve days before I found out I was finally pregnant, I found out that I could lose my Mom. Miraculously, she is still with us 10 years later. I know our days with "Neema" may be numbered, but I am thankful for the long warning that she would be leaving us earlier than she should. Some people don't get that warning. Happy Mother's Day, Mom. I'm so glad that Joey has had a chance to create some fabulous and long lasting memories with you.

Saturday, May 3, 2014

Reading Success

On April 24th, I had Joey's annual IEP meeting. I was nervous, but with so much other stuff going on in my life, I felt like it was going to be another letdown. Usually the meetings start with how poorly Joey pays attention, how he can't focus, how he is behind grade level, etc.

Well I was in for quite a surprise.

Some parents would be upset to hear the word "average" be used to describe their child, but other parents would feel it was a dream come true. Today, I was told that Joey is "an average reader on a 3rd grade level." I wanted to cry tears of joy. He entered 3rd grade at a 1st grade reading level.

Miracles happen! Yes, I feel it's a miracle. Not only has he progressed, but his team, who weren't his biggest supporters, actually had positive things to say.

Of course Joey's response was, "Can I quit Kumon now?"

Speaking of Kumon, he received a Rising Star medal this week for being on grade level.

I am so proud of my boy!

Wednesday, April 2, 2014

CNN iReport for Autism Awareness Day 2014: Reflection and Hope

One of the things I like the least is talking in front of others, let alone record myself speaking in front of others (and I really dislike the frozen shot of my crazy face). But his story needs to be told.

Today, I celebrate all the families who work tirelessly everyday to make their children's lives better. I also celebrate all of the therapists who work tirelessly to teach children the skills they need to adapt to the crazy world around them. But most of all, I celebrate my sweet boy, who challenged me in a way I never imagined and helped ignite the fire in me to help others. I love you, Joey!

Here is the link:

My son hit all his physical milestones at the suggested age but he was quiet. Painfully quiet. At 18 months old, he was able to say less than 20 words. By 2 years old, his words were gone.

We started speech therapy right around his 2nd birthday and implemented a Picture Exchange Communication System. Around 2 1/2, he started to imitate us! Shortly after, I participated in a Jump Start program through a Phoenix-based organization and I learned how to work with my son by implementing a home program based on the principles of Applied Behavior Analysis (ABA).

My son continued to be a quiet child who played by himself, but his language slowly emerged. He would surprise us each day with a new word. Once, at pet store, he looked at a puppy and said "poop." You couldn't imagine how happy we were to hear that word. Spontaneous and functional - what we always hoped for! I started recording all of the things he said back then. Seven years later, I still write down his funny quotes and thoughts about life.

By the age of 5, in his final months of preschool, Joey was mainstreamed into a general education classroom. Without early intervention, ABA, and determination, this never could have happened.

We have continued to work on my son's communication and social skills. He plays team sports (soccer and flag football) and does really well at school. His favorite subjects are math and science. He has a wide variety of interests and he shares those interests with his friends from school. He gets invited to birthday parties and has weekly play dates. These are things I used to only dream of, as I feared my son may never speak just 7 years ago.

The best advice I can give is for parents to find professionals that will work with their child and that will also train the parents on how to carry out the different interventions long after the therapists leave. Through the journey with my son, I now help parents as a Behavior Analyst, and spend most of my days training parents. I'm passionate about it because if I hadn't received parent training, I fear my son would not have come as far as he has.

If you are the parent of a newly diagnosed child, find support in your area. The support will help you grieve and heal, while hopefully providing you information and referrals to who will help your child achieve their goals.

Good luck. And never give up hope!

Follow Joey's story at

Thursday, March 27, 2014

1 in 68

1 in 68. Speechless.


Autism now affects 1 in 68 children; 1 in 42 boys

Posted by on Mar 27, 2014 in Featured | 0 comments

Autism now affects 1 in 68 children; 1 in 42 boys

Autism Groups React to New CDC-Reported Prevalence of 1 in 68 Children
WASHINGTON, DC (March 27, 2014)—Today, the U.S. Centers for Disease Control and Prevention issued the newest autism prevalence statistics.  For children born in 2002, the prevalence of autism was 1 in 68; 1 in 42 boys.  Almost 60,000 US 12 year-olds likely have autism.  Thirty years ago, autism affected 1 in 2,500 children; there has been a 37-fold increase.
Katie Weisman of SafeMinds stated, “Broader criteria and awareness cannot account for this magnitude of increase.  The federal government continues to spend millions of dollars ineffectively and ‘potentially duplicatively’ according to a recent GAO report.  We need to identify environmental triggers for autism, prevent them, and develop effective treatments.”
Holly Bortfeld of TACA stated, “The federal government has spent $1.6 billion on autism since 2006, but the money is not helping those affected in meaningful ways. We need to improve medical treatment for the many co-occuring health concerns of individuals with autism and address the wave of students who are aging out and entering an adult world with no plan for them. ”
The Autism Policy Reform Coalition (APRC) is advocating for changes in the U.S. Government’s response to the autism crisis and represents a constituency of over 100,000.  The APRC is calling for significant changes in the Combating Autism Act, which is to be reauthorized by Congress this year.
“Since 2011, 44 U.S. children with autism have died after wandering away from a safe environment,” stated National Autism Association President Wendy Fournier.  ”Our federal government must recognize these deaths, and the urgent needs of our most profoundly affected population. They suffer silently in pain from untreated medical issues; they are abused, bullied, and may be at increased risk of suicide. Their deaths and injuries are preventable through an appropriate federal response, which our coalition is dedicated to securing.”
The AUTISM POLICY REFORM COALITION includes:  Autism is Medical, Defending Academic Integrity and Research Foundation, Generation Rescue, National Autism Association, SafeMinds, Talk About Curing Autism, and The Thinking Mom’s Revolution.  Its mission is to educate public officials and to encourage legislation that will make a measurable difference in the lives of the persons with autism and their families.
To view the report in it’s entirety, click here.

Monday, March 24, 2014

Parenthood Magazine's shout out to ABA

Thank you, Parents Magazine, for talking about ABA and warning parents about alternative treatments.


Autism Therapy and Treatment Options

No two kids on the autism spectrum are the same, and often, neither are their treatments. Here's what you need to know about finding the right approach for your child.

Autism Spectrum Disorder (ASD) has two main hallmarks: difficulty with communication and social interactions and a tendency toward restricted, repetitive patterns of behavior and interests. But no two children on the spectrum are alike, which can make an ASD diagnosis particularly overwhelming. It can be hard to understand which aspects of your child's behavior and development are part of her ASD and which are typical for her age or just idiosyncratic parts of her personality. You may also worry that your child's issues are too severe or ingrained for treatment to make much difference, but it's important not to lose hope. "With good treatment, many and increasingly more children will get better," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine. "By that I mean they will grow up to be self-sufficient adults who can live independently. They may never be problem-free, but we see many children do very well."
If your child has been diagnosed with ASD, you'll need to find an autism specialist who can partner with you in your child's care. That specialist may be a neuropsychologist or neuropsychiatrist, a clinical psychologist or psychiatrist, or a developmental pediatrician. "The key is that he or she has special training in understanding the needs of kids on the spectrum," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Your pediatrician should be able to make referrals; you can also contact the Autism Response Team at Autism Speaks for help finding a qualified specialist in your area. Once you find the right therapist, he or she will work with you and your child to devise a treatment program that will look something like this:

Find the Right Behavioral Therapy

"When we see a newly diagnosed 2- or 3-year-old, our first goal is to get him into pretty aggressive early intervention known as applied behavioral analysis [ABA]," Dr. Rosenthal says. "There is a tremendous amount of research to show that this is the way to go." An ABA-trained therapist will work with your child for 25 or more hours per week, systematically encouraging desired social and communication behaviors and actively teaching the kind of social interactions that other children learn intuitively. The list of goals may include improving attention span, building social interaction skills, and developing verbal and nonverbal communication skills.
Depending on your child's specific needs and progress, other evidence-based approaches might be used. These include pivotal response therapy (PRT), which is derived from applied behavioral analysis; the Early Start Denver Model approach, known for its developmental curriculum of skills; or the TEACCH approach (Training and Education of Autistic and Related Communication Handicapped Children). Many children with ASD also benefit from occupational, physical and speech-language therapies, and others need a kind of hybrid approach, in which therapists choose from a variety of methods to meet their needs. "With children on the milder end of the spectrum, we often find that all they need is a little bit of speech-language therapy to help with social skills," Dr. Rosenthal notes. "Other kids really need the total treatment package."
It's important to understand that most public school systems offer only one kind of autism program. "It varies tremendously by school district whether your child can be in an ABA-based classroom or one with a developmental approach," Dr. Volkmar says. "We run into problems when a kid is diagnosed but the only program available isn't a good match with his needs." If you think your child's current therapeutic approach isn't working, talk to your specialist about the best strategy for switching to something different.

Consider Medication if Appropriate
"Medication can't fix autism itself but it can be useful if a child has some associated problems," Dr. Rosenthal says. For example, some children with ASD also experience high levels of anxiety, inattention, or hyperactivity; medications are often prescribed to help with those issues, which can otherwise interfere with their social and behavioral progress. "When medication can help get the symptoms of the associated problem under control, we often see a big jump in a child's progress," Dr. Rosenthal notes.

Be Wary of Alternative Treatments

Diets, vitamins, and chelation (a process that is said to remove mercury or other heavy metals from the body) have all been touted as treatments for ASD. But "none of these have any reliable science behind them," Dr. Rosenthal says. And some (particularly chelation, which can cause kidney or liver damage) can be very dangerous. If you want to pursue an alternative therapy for your child, be sure to consult a qualified physician first.

Will My Child Recover?

It's important for parents to understand that autism is often a lifelong condition, without any known cure. But good behavioral therapy is extremely effective, especially when it's started as early as possible. "It's not a question of whether a child with ASD can make progress--it's a question of how much progress," Dr. Rosenthal says. In 2013, researchers at the University of Connecticut co-authored a landmark study published in the Journal of Child Psychology and Psychiatry, which showed that some children with ASD can achieve "optimal outcomes." "The 34 children identified in this study were making friends, doing well in school, and generally functioning well," says Dr. Rosenthal, one of the study's co-authors. "They had effectively moved off the spectrum. It's too soon for us to say why these children did so well, but early behavioral intervention does appear to be key." Further research is needed to replicate the results in a bigger population and understand more about what worked so well for these children. Dr. Volkmar, who was not involved in the study, notes that the term "optimal outcome" is subjective: "I know one college-aged boy who by many definitions has 'moved off the spectrum,'" he explains. "But he also can't do his laundry, so we have a long way to go before he's fully functional in all areas of life." But Dr. Volkmar, too, wants parents to stay optimistic. "I have seen many young children make tremendous progress," he says. "There are so many reasons to be hopeful."

Friday, March 14, 2014

Flashback Friday 2005 (they grow so fast)

I was going to post a picture of Joey at 5 months old in his St. Patty's Day pajamas, but why? He did look cute but that day has little meaning to me.

Instead I selected a picture from June 2005.

This picture of Joey shopping with me always reminds me of how lucky I was that I worked for a company that allowed me to switch to working nights so that I could spend everyday with my sweet Pepper. I wish I could get those days back. Being home with him this week reminds me of those days and how time goes so fast. The time we spend together gets less and less with each passing year. I am so lucky to be his Mom. For those Moms home with their babies, enjoy every "first," every giggle, every moment you can. Before you know it, they will be saying "I'm Italian, deal with it."

Monday, March 3, 2014

Losing the Autism Dx - A doctor's persepective

It sounds like Joey isn't protected from having to get a reassessment, but that's ok, because his school doesn't acknowledge his dx anyway.


Why Are Children Losing Their Autism Diagnosis?

Posted: Updated:
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Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.
Follow Arshya Vahabzadeh, M.D. on Twitter:

Sunday, February 16, 2014

Life changing news, 10 years later

Today marks the 10th anniversary of the day I found out I was pregnant. 10 years ago today, my doctor confirmed I was going to have a baby. They say once you have a baby, time flashes in an instant, and before you know it they are leaving for college. When he turned 9 this past October, I realized that half his childhood was over. Where did it go? Some parts I wouldn't relive, but those precious times as a baby...well I would give anything to have them back. If I knew back then that hed be my one and only, I would have treasured them even more.

When I found out I was pregnant, it was a surprise. It wasn't like we weren't trying. We were! We just finished our 4th cycle of Clomid. But 12 days before I found out I was pregnant, my Mom was diagnosed with Congestive Heart Failure. Her ejection fraction was 19%. Anything lower than 35% means you are in serious danger of your heart stopping. To say I was distressed was an understatement. So when I went in to the doctor for my monthly check up, I told her I was late with my period but I brushed it off. I told her how stressed I was about my Mom. I also told her I booked an 8 day trip to NY for April that very morning because I didn't really believe this pregnancy thing was going to happen (I would have never booked it if I knew I was pregnant). She told me to humor her and take a urine test. She came back and said I was pregnant but that we should confirm it with a blood test. I couldn't believe the news.

Now, 10 years later, I have a bright, sweet, beautiful boy. Soon, he will be a handsome, strong man, getting ready to start his life. I am so honored to be his Mom. I tell him everyday that I love him more than anything. I do, with every fiber of my being. I've often wondered if I love him more than some other parents love their children because I wanted him so much. I prayed for him for a long time. I will never take him for granted because he almost wasn't mine. I was so close to never conceiving. He truly is the love of my life. And I'm so glad I got the chance to be his Mommy.

I also didn't understand how protective you could feel over another human being until that day. A fitting picture on the 10th anniversary of the day I found out I would be a Mom.

Sunday, January 26, 2014

Avonte's Law

I am glad that they will finally do something to help our kids that wander. I am sad that another precious life had to be taken before this happened.


Schumer to propose "Avonte's Law" to protect autistic children

Sunday, January 26, 2014

It is something Michael Rosen, the Executive Director of Autism Speaks has lost sleep about - his son Nicky is autistic and non-verbal. When Nicky was little, he wandered. Rosen says he once found Nicky on a neighbor's roof.

"Eventually we had to put locks on top of doors, and that's how people with autism live," says Rosen, "you can't turn your back for one second."
This was a tough thing for Vanessa Fontaine to hear - her son, Avonte Oquendo also wandered. On Saturday, Fontaine buried her 14-year-old.

On Sunday, still too upset to speak, Fontaine did throw her support behind an idea that could have saved her child.

Senator Charles Schumer calls it "Avonte's Law" - a high tech solution to an age-old problem. The law uses tracking devices for kids like Avonte.

"We know how to do it, we've seen it done - it works," says Senator Schumer.

After Avonte disappeared, volunteers spent months searching for the teen, whose remains were just recently discovered along the banks of the East River.

Schumer says under this new program, police would track kids. It is modeled after a similar federal program that now tracks those suffering with Alzheimer's.

"The only barrier is the funding," adds Senator Schumer, "the devices themselves cost about 80 or 90 dollars, and then it costs only a few dollars a month to do the monitoring."

As for the actual tracking device, it could be worn as a wristband, clipped onto a child's belt loops, put in shoelaces, or sown into clothing. 

In Avonte's case, time was of the essence. Experts say using these devices saves precious minutes, and reduces the amount of time it takes to find a child by 95 percent.