A message of peace and hope

I mentioned in my last post that the Greater Boston Area has been in a surreal "Twilight Zone" state of mind in the past few weeks. I will not give details, because I am sure just about every single person has learned of the horrific events at the 2013 Boston Marathon on Patriots' Day, Monday, April 15th. What I will say is that I have a new sense of immense pride for my state, my city and my pastor! Dr. Roberto Miranda is the Senior Pastor at Congregation Lion of Judah in Boston. Congregación León de Judá, to be exact, since it is mostly a Spanish-speaking congregation. This is the same church of which I have written so many times in regards to the special needs children's ministry. God led us to this place of worship after a difficult decision to leave our previous church after over a decade. I was pregnant with our little baby boy and we were a bit like Nomads.

Pastor Miranda is a family friend, in so many senses of the word! I have known him since my childhood, my parents knew him and his wife before they were married (matchmakers?!), he was my husband's beloved pastor in adolescence (such a critical time in any boy's life) and Dr. Miranda's grandson, was my little guy's first and only best friend! At our house we just know him as "Pastor Roberto," as the little man calls him. It seems almost irreverent to call him that after what I have to share.

Dr. Roberto Miranda was one of only a handful of faith leaders asked to speak at the recent interfaith service in the city of Boston titled "Healing our City." I have watched this video over and over and each time I pick up a new word, phrase or idea that is so inspiring, it fills my spirit with peace and hope. I am humbled to call this man of God my pastor and I feel even more unworthy of calling him our friend... but that's who he is and who he will continue to be. I thank God for choosing Dr. Miranda as His messenger for the city during these difficult times.

Although his message was meant to uplift a grieving city, so much of it applies to our lives as parents and family members of individuals with autism spectrum disorders. Originally meant for those who were hurt or lost loved ones, this portion seems especially poignant for newly diagnosed families:
"We do pray that they also may receive the grace to look beyond this moment of suffering and to believe their life is far from over. That they can rise beyond their pain and their loss to become spiritually stronger and more agile. That they can find fullness of life, happiness and personal realization in the new normal that they now inhabit. May they never allow bitterness or hatred to linger more than a brief moment in their soul. May they receive that peace that passes all understanding." 

Blessings!
DC

For a full transcript of the sermon please click here.

Excellent article about the upcoming changes to the DSM-5

Hello everyone-
This past week has been a surreal "Twilight Zone" experience in the state of Massachusetts. I will write something more poetic about that later... Today I was reading the weekly newsletter from the Autism Support Network and saw an extremely well written and informational article written by Michelle Garcia Winner, creator of the Social Thinking curriculum (click here for more details on Social Thinking).

You see, as my little guy gets older and his language has started to explode, I am seeing more of an Asperger's Syndrome profile than high functioning autism or PDD-NOS. I don't bother telling people that, since soon none of that will matter... We will now have one large umbrella for Autism Spectrum Disorders with various degrees of impairments. So, does it really matter whether I say my son has high functioning ASD, PDD-NOS or Asperger's Syndrome? THAT is exactly what this article is about. I highly recommend that you read it and learn about the upcoming changes and what they may mean for you and your family or loved ones with ASD.

http://www.autismsupportnetwork.com/news/proposed-dsm-5-changes-regard-asd-3478294

In the meantime, my little guy will just be my little guy. He has been struggling with behavior regulation lately and it makes us stop and think.

I will quote something I wrote to a friend in an email:
We are so worried about "his level of aggressions and his explosive outbursts. He is getting bigger and stronger and we can't let this continue. The worst part is that afterwards he feels SO guilty that he will cry until he either throws up or passes out asleep. It is absolutely heartbreaking! Every day I wait for the phone call from school.
It is really hard to explain to people that we are considering medication for our 5-year-old, but both my husband and I lie awake at night worrying about Nathan seriously harming himself or others... and the consequences of that. Nathan is so incredibly kind, sweet, loving and smart but the rest of the world doesn't see that side because of his sensory and behavioral difficulties. Unfortunately, we can't keep him home in a comfy bubble his whole life. We have to help him be able to function and be a active member of society-- showing others at least a little bit of who he really is and what he can really do. But he needs help to do that and we welcome any/all of your prayers for him/us."

Today in my devotional, I found Joshua 1:9, "Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go." I often read this passage to my little guy, reminding him that God is with him and that he can ask God for help in any situation. We welcome all of your thoughts and prayers.

Blessings!
DC

Beautifully written with love and honesty

Hello everyone!  I read this story on the Autism Speaks blog a few months ago and found tears streaming down my face. As time passes we become more and more afraid of Nathan's strength and his inability to control his behavior at times. Many a night I sit in bed worrying about his future, our future, if we can't get these under control. He is SO remorseful after it happens, but he just can't interrupt his neurology to stop in the moment. I remember my sister's birthday celebration this past fall, where Nathan had an unusual freakout/meltdown (the kind you don't forget...ever...). I just kept apologizing to everyone and their words to me were, "We love Nathan and accept him just the way he is." I guess that's why this story hit home at the time. Time has passed and his behavior has improved with us at home and in the community, but school is still such a struggle! I share this with you now, with the hopes that it will help you find peace in the midst of your struggles.

Blessings!

About the author: Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and intellectual disabilities (and empowering caregivers to do the same). Caroline blogs at A Wish Come Clear, serves as a columnist and features writer for Autism After 16, and works as a copywriter for non-profits and small businesses with a special needs support focus. Readers are invited to receive a complimentary copy of Caroline's digital book, 'Your Creed of Care: How to Dig for Treasure in People (Without Getting Buried Alive)' via A Wish Come Clear. 

From Helplessness to Courage: A Sister's Story

Posted: 07 Nov 2012 12:55 PM PST

It is my first memory, the one that will be in my bones when they are but dust. I stand in a white room with a high ceiling. Sunlight comes in through the windows, making patterns on the rug. The rug is faded where the light strikes it. Children my age are playing on jungle gyms, yet I do not move to join them.

Suddenly I’m in my mother’s arms, and she’s holding me tightly; my hair is wet with her tears. What's wrong? I have no idea. As my mother lets me go, she speaks to a woman at her side. They mention my brother’s name, saying words I don’t know yet:  Autism Spectrum Disorder. Diagnosis.
I’m four years old. My brother Willie is two. I don't understand any of this, of course, but I know that my mother is weeping and I want to comfort her.

Years pass. I finally ask my mother if the room I remember so vividly was, in fact, real. She looks at me with astonishment in her eyes. “You remember the diagnostic center? With the jungle gyms and the high ceilings?”
I do remember, because she reached out for me.
***

Fast-forward thirteen years, and Willie – my hilarious, gifted, beloved sibling – starts struggling with self-injury and aggression on a daily basis. I cry out:  Where is my brother? This unfamiliar person punches holes through walls and bites himself.

Our house feels like a war zone. In desperation, I beg my parents to send Willie away. We talk about it for a time, but ultimately, my mother says, “No. I can't,” and my father agrees. Even though a part of me is furious with them, another part of me sees how powerful, how beautiful, their choice is.
My parents, like so many others, refuse to give up on their child. And in these dark hours, the love that sparks that choice is the only light I see.
***

Today, I listen as my mom describes Willie's latest meltdown. He's been doing well, so this unexpected episode has been particularly challenging. He's hurt himself, and my mom as well.
I watch my mother weep. I hear her say that she feels like a failure. I am tempted to close off, or get angry … anything to avoid feeling as helpless as I feel right now. Why can't my brilliant brother stop hurting himself and others?

My first memory is shaded with this same helplessness and confusion. But now, thanks to my parent's example, I take courage. I can't give my mom the answers we both long to hear. What I can do, however, is tell my mom my truth:  Angry and afraid as I am, I still love and accept Willie. And I tell her that she's an amazing mom, the farthest thing in the world from a failure.
She reaches out her hands, saying, “Thank you, sweetie.” Nothing is different, yet everything has changed.

1 in 50... Can that be right???

Here is a wonderful article written by one of my favorite authors who happens to be an adult diagnosed with Asperger's Syndrome. Thank you to my sister, Chely, who bought me his first book, Look Me in the Eye. This article (below) was published on the website for Psychology Today and shared on the Autism Speaks weekly blog. It is definitely worth reading. Is 1 in 88 now 1 in 50? Let's see what John says:

Autism Prevalence: Can It Be 1 in 50?

Thoughts on the latest autism prevalence news, and what it means to us

Published on April 9, 2013 by John Elder Robison in My Life With Asperger's

 

One of the first presentations at today’s IACC meeting explained the recent NCHS survey that found a 1 in 50 prevalence of autism in American school children. Stephen Blumberg from CDC and Michael Kogan from HRSA presented their findings and answered questions. There has been a lot of talk about this study in the media these past few weeks. I was happy to have a chance to ask the project leaders some questions about their work.

One of the most significant points the researchers made was this: Their research methodology differed quite a bit from the CDC methodology that led to last year’s 1 in 88 report. That makes it impossible to compare the studies – and their results – directly. However, we can compare this study to itself, since it was done before, in 2007. The methodology between 2007 and last year did not change, yet the observed prevalence rose dramatically (1 in 90 rose to 1 in 50). Both researchers felt this change from one survey cycle to another was significant.

But does it signal growing awareness, or something else?

The researchers found that roughly a third of the autistic kids identified were diagnosed after the 2007. Yet those kids were old enough to have been included in the original 2007 survey. Why weren’t they counted last time? Presumably, they were unrecognized. In response to my question, the scientists agreed that the National Survey of Children’s Health picked up “educational autism” whereas the ADDM survey looked at medical records and only uncovered “medical autism.” It’s no surprise that identified prevalence would vary when two different definitions are used.

Both studies returned valuable, valid findings. The actual number of people with autism may lie somewhere between the two study figures. Some parents see issues with their children, and talk to their pediatrician. That conversation may lead to formal autism screening and diagnosis. Armed with that information, parents request services from their schools and their health care provider.
Other times, parents don’t notice, or don’t take action. School staff notices abnormalities. Tests are done, and kids are diagnosed with autism in the school. The result: those kids are provided with educational supports yet their diagnosis remains informal; outside the medical system.
How many of those kids would also receive a “medical” diagnosis of autism; one that would be validated by a gold-standard tool like the ADOS? Unfortunately, we do not know. I’m not aware of a study that has made that comparison.

There is a second issue with the NSCH study – that it is based on telephone survey. Workers made thousands of phone calls in their attempt to interview parents, but 75% of the calls were unanswered. When an adult did pick up the phone, the interview completion rate was approximately 54% for landlines, and 42% on cell phones. The comparable rate for 2007 was 66%. When so many people opt out of a study on disabilities in kids, it stands to reason that many simply felt their kids had no issues so there’s no reason to take part. That may well result in a bias toward parents whose kids have issues, and a higher identified prevalence.

So what can you take away from this latest news?
This study, and many others in recent years, highlights the huge and growing number of kids who need special services in school. As the numbers of special needs diagnoses have skyrocketed, school budgets have stagnated. How will we – as a society – address this growing gap between identified need and voter-funded support to address it?

The differences in methodology between this study and the earlier CDC work preclude direct comparison. To me, this latest study confirms what many of us have suspected – there is an explosion of autism awareness, especially among parents – since 2008. That’s a good thing, when it leads to more successful kids. Are there circumstances where it’s not so good? This latest study provides autism advocates with another piece of ammunition to argue for greater funding for services and support. At the same time, we must recognize that opponents of funding increases will use studies like this, and the recent news of ADHD prevalence (mentioned in the NY Times and other media) as justification for another claim: that there is an epidemic of over-diagnosis that should not be matched with increased funding. So the study will be used both for and against the cause of autism advocacy.
The final point I’ll offer is that this recent study is once again limited to a description of autism in kids. Just as we distinguish mildly affected kids with educational autism diagnoses, we might distinguish geeky undiagnosed adults from their more significantly affected adult peers. If this study is a guide, that geeky population who might benefit from some support may be much bigger than previously imagined.

I’ll be interested in your thoughts . . . .

John Elder Robison is an adult with autism. He’s the author of three books on autism and difference – Raising Cubby (2013), Be Different (2011) and Look Me in the Eye (2007)

To read the original article, please visit: http://www.psychologytoday.com/blog/my-life-aspergers/201304/autism-prevalence-can-it-be-1-in-50