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.
Monday, April 29, 2013
Monday, April 22, 2013
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
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
Saturday, April 20, 2013
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.
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.
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.
Thursday, April 11, 2013
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:
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
Autism Prevalence: Can It Be 1 in 50?
Thoughts on the latest autism prevalence news, and what it means to us
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.
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.
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
Tuesday, March 5, 2013
Call it Karma? I call it Providence
WOW!!! I can't believe it's been almost two months since I have posted here! It seems my life gets more and more "interesting" as time passes. Just this year we've had deaths in the family, serious injuries, illnesses, weddings, funerals, crises of all types, meetings, fundraisers, medical appointments, you name it! Yet at the end of the day, I always find some time to thank my dear Lord for all of the amazing events in my life, whether good or bad.
Here I am, again, writing and praising God for moving mountains on behalf of Nathan:
I have worked in a wonderful school district for close to 20 years now. I have so often wondered how long I'd be there and have begged God to show me His plans. I won't lie, I have tried to leave, but God has always closed doors and I have remained constant. I cut back on my hours, transferred schools, anything to try to be happy where I was while trying to meet all of demands and needs of being Nathan's mom.
I can't say it has been easy to stay put... but I have learned SO MUCH along the way! I've also met some pretty fantastic people... colleagues who have come to me for help both professionally and personally (for their own children at home). I often thank God for making me the way I am and for guiding me in my every move. He has allowed me to make significant connections with people along the way. I also thank God for giving me the knowledge and allowing me to experience things that I could always use to help others.
I could be here for hours, days, if I started writing about all my attempts to change jobs or paths. Doors have closed and obstacles have stepped in my way, yet what is so remarkable is that each of those events, though painful at the time, have led God to moving mountains for Nathan. To give just a few examples: there's the Early Intervention program where I did my practicum in grad school- upon initial diagnosis, the director offered to see him for free and get the best team possible onboard to help us. There's the OT clinic where I did my internships and worked part-time- Nathan is now seen there up to 3 times a week for specialized services in one of the best clinics in the Northeast (and I have some of the best of their therapists and Nathan is SO loved and cared for just because he is mine). The list literally goes on and on... and just when things looked the bleakest was when God worked the GREATEST miracles (yes, I call them that because there are no other explanations!)
This week we received news that Nathan will be able to go to school in the district where I work. Not only that, but he will be at a school FILLED with so many of those former colleagues I mentioned earlier in this post. These are people who I know will look out for Nathan and keep an extra set of eyes on him to make sure he's OK. I see them as his guardian angels all around him...
As I tell people our story and share these new developments I often hear "it's karma" (getting back based on what I've given). I call it "providence," divine providence. Nathan is living proof that God still works miracles: from conception, to his birth, diagnosis and now his education. My God is a faithful God!!! We have chosen to walk by faith and God has truly been faithful! We may not always get what we want when we ask for it, but you can be sure that what we get is ALWAYS the best! I pray that you, too, will place your trust in Him and feel confident that closed doors are not always a bad thing. Nathan went from being seen as a failure and nuisance to being recognized as an asset and valuable member of a community just by being accepted into this new school district. I know God has miracles in place for you if you put your trust in him, grab on to his hand and take the leap of faith. No faith, no results!
Blessings!
DC
I have not hidden Your righteousness within my heart; I have declared Your faithfulness and Your salvation; I have not concealed Your lovingkindness and Your truth From the great assembly. Psalms 40:10
O Lord, You are my God. I will exalt You, I will praise Your name, For You have done wonderfulthings; Your counsels of old are faithfulness and truth. Isaiah 25:1
Here I am, again, writing and praising God for moving mountains on behalf of Nathan:
I have worked in a wonderful school district for close to 20 years now. I have so often wondered how long I'd be there and have begged God to show me His plans. I won't lie, I have tried to leave, but God has always closed doors and I have remained constant. I cut back on my hours, transferred schools, anything to try to be happy where I was while trying to meet all of demands and needs of being Nathan's mom.
I can't say it has been easy to stay put... but I have learned SO MUCH along the way! I've also met some pretty fantastic people... colleagues who have come to me for help both professionally and personally (for their own children at home). I often thank God for making me the way I am and for guiding me in my every move. He has allowed me to make significant connections with people along the way. I also thank God for giving me the knowledge and allowing me to experience things that I could always use to help others.
I could be here for hours, days, if I started writing about all my attempts to change jobs or paths. Doors have closed and obstacles have stepped in my way, yet what is so remarkable is that each of those events, though painful at the time, have led God to moving mountains for Nathan. To give just a few examples: there's the Early Intervention program where I did my practicum in grad school- upon initial diagnosis, the director offered to see him for free and get the best team possible onboard to help us. There's the OT clinic where I did my internships and worked part-time- Nathan is now seen there up to 3 times a week for specialized services in one of the best clinics in the Northeast (and I have some of the best of their therapists and Nathan is SO loved and cared for just because he is mine). The list literally goes on and on... and just when things looked the bleakest was when God worked the GREATEST miracles (yes, I call them that because there are no other explanations!)
This week we received news that Nathan will be able to go to school in the district where I work. Not only that, but he will be at a school FILLED with so many of those former colleagues I mentioned earlier in this post. These are people who I know will look out for Nathan and keep an extra set of eyes on him to make sure he's OK. I see them as his guardian angels all around him...
As I tell people our story and share these new developments I often hear "it's karma" (getting back based on what I've given). I call it "providence," divine providence. Nathan is living proof that God still works miracles: from conception, to his birth, diagnosis and now his education. My God is a faithful God!!! We have chosen to walk by faith and God has truly been faithful! We may not always get what we want when we ask for it, but you can be sure that what we get is ALWAYS the best! I pray that you, too, will place your trust in Him and feel confident that closed doors are not always a bad thing. Nathan went from being seen as a failure and nuisance to being recognized as an asset and valuable member of a community just by being accepted into this new school district. I know God has miracles in place for you if you put your trust in him, grab on to his hand and take the leap of faith. No faith, no results!
Blessings!
DC
I have not hidden Your righteousness within my heart; I have declared Your faithfulness and Your salvation; I have not concealed Your lovingkindness and Your truth From the great assembly. Psalms 40:10
O Lord, You are my God. I will exalt You, I will praise Your name, For You have done wonderfulthings; Your counsels of old are faithfulness and truth. Isaiah 25:1
Friday, January 18, 2013
25 Random Things About Motherhood, autism-style!
Hopeful Parents
2) I took Matthew on a job interview when he was eight weeks old because I couldn’t bear to leave him with a babysitter.
3) The first person that told me that Matthew, then three, was developmentally delayed was a speech therapist. She was also the first person who didn’t mention how adorable he was.
4) My husband and I coached Matthew before his next evaluation with a child psychologist. We read him Richard Scary’s Best Word Book Ever.
5) When the child psychologist confirmed that Matthew was developmentally delayed, I thought that meant he could catch up. I really did.
6) Matthew lined up toys and laughed too hard at sprinklers in the garden. None of the booksmentioned this behavior in the milestone department. What was going on?
7) I was angry with Matthew for being stuck on the sprinklers, and the drains, and the lights, and I felt guilty that I was angry.
8 – When Matthew’s baby brother Andy charmed family and friends with his personality and smarts, my love for Matthew deepened.
9) Andy is now 24. My most cherished childhood memories with him are the walks we took while Matthew was with speech therapist/psychologists/occupational therapists etc.
10) Matthew’s youngest brother, John, was one week old when we tried our first miracle cure, auditory training. He is now 20 and helps Matthew film “rock-u-mentaries”. More about that another time. He is even more patient with Matthew than I am.
11) Matthew is WAY more capable than I ever dreamed he would be. WAY. He’s hardest working person I know.
12) It used to ruin my day when people stared at Matthew, but it doesn’t anymore. I get that my son’s behavior can be stare worthy, and that people are curious.
13) It ruins my day when Matthew tells me he is lonely….
14) …but that happens less frequently because Matthew has friends. Isn’t that great?
15) The year I accepted that Matthew’s autism was lifelong was also the year I had a mini-breakdown. O.K., It was more than a mini-breakdown.
16) The best things I ever did was find a good therapist.
17) My sense of humor has saved me, and it gets better every year.
18) There is nothing more genuine than one of Matthew’s smiles.
19) There are more kind people in the world than there are jerks.
20) I cried at every IEP except for the last one.21) I never blamed vaccines.
22) I’ve met some of the best people because of Matthew.
23) My husband I have stayed together-I hear that is unusual.
24) I am luckier that most.
25) The lump in my throat will never go away.
From the Autism Speaks blog: http://www.autismspeaks.org/blog/2013/01/16/25-random-things-about-motherhood-autism-style-update?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+|+Official+Blog%29
Thursday, December 6, 2012
An Award, A Strange Pizza and A New Guiding Light
November 9, 2012:
With a deep breath and the deafening sound of my heart pounding I opened the door. In this room full of unfamiliar faces I scanned the horizon for what I was looking for. I found it hard to speak and even swallow, as my nerves seemed to have depleted my mouth of any possible essence of moisture. Yes, I was quite nervous! I was there with a sole purpose: to meet the young man who'd allowed me to feel safe to have hope again. What will he be like? Would he spare just a few minutes of his time to chat? My mind was racing with countless possible scenarios for the evening's events. I was at the Current Trends in Autism Conference right here in Massachusetts and the room was filled with not a single soul I knew (which doesn't happen to me very often in the autism world).
The sound of my cell phone ringing forced me back into reality, and, was I ever glad! Kerry Magro is an adult with autism. I wrote about him in my post titled "Star Struck" back in August. He was being honored that night with the Margaret Bauman Award for Excellence as an Outstanding Advocate for autism!!! {I can't, and won't, deny my admiration for this young man and the fact that I secretly stalk him online-- it's OK, he knows I'm his 'self-proclaimed groupie'} As I answered the call on my phone I recognized the voice I was so familiar with from Kerry's Korner video blog on the Autism Speaks video channel and the My Autism, My Voice website...
Something I could not have begun to fathom back in August was about to happen... and there he was: tall, slender, well poised, handsome and welcoming in his impeccable black suit. Expecting an awkward and formal handshake I walked closer to introduce myself and instead found myself embraced in a big authentic hug! As we started speaking it felt as if we'd been friends forever. The connection was instant and I knew I had just made a friend. WOW! Well, like meeting Kerry wasn't enough, he told me he'd traveled with his mother, Suzanne. I had read a letter that Suzanne had written and I knew that she'd walked in my shoes and had come out victorious on the other side. Industrial-sized wheels were turning in my head. I had to think about the BEST question to ask her. I had this one chance and I had to make it count!
Well, it turns out that none of my fretting, pondering and maniacal anxious anticipation was even necessary. All the eloquence I was struggling to muster was futile because Suzanne and Kerry are just a mom and her son, just like me and Nathan! They are two heavy-weight champions who fought this seemingly endless battle... and won! The more we spoke, the more I came to realize why I have this compelling drive to learn all that I can about Kerry. He represents what I hope and pray that Nathan will become one day. As we sat sipping drinks (which Suzanne treated ME to!) and shared hor d'ouvres the conversation somehow shifted to me and my life. I thought I was there to learn, to ask as much as I could and gather as much information possible like a little squirrel hoarding its feast to digest slowly in the future. Yet I was the one being asked most of the questions. The more I shared about Nathan, the expression on Kerry's face visibly changed. He explained that he felt like I was talking about him as a child! More reason to hope!
The time came for Suzanne and Kerry to each speak at the podium... and I just soaked it all in. What struck me the most was that as each one spoke, they were simply praising the other. This is what I learned that evening: they say that behind every great man is a great woman; well, behind every successful adult with autism is an unrelenting, driven and unwavering mom (and dads, of course). As star struck I was about meeting Kerry, I just can't find the words to describe the inspiration and fire to persevere and fight for my son that was passed on to me upon meeting Suzanne. Expecting pomp and circumstance I found two loving, humble, giving people who'd traveled all this way in the aftermath of Superstorm Sandy and a Nor'easter (they are from New Jersey)... After the ceremony Suzanne asked if I could stay a little longer and join them for dinner... Umm... YEAH!!!
The surreal whirlwind of thoughts was dizzying as I was trying to wrap my head around what was happening. People kept stopping with outpouring of accolades for Kerry. I was sitting with the president of the school committee, transportation expert and hero mom of this successful, educated young man who rubs elbows with elected officials and celebrities... Yet they were so down to earth that they decided to just order an appetizer because the menu "just had strange pizza, not normal pizza!" One mom stopped to gush over Kerry and Suzanne just said, "he needs to get back home to finish his homework!" (Kerry is finishing his thesis and preparing to graduate with a Master's in Strategic Communications and Leadership from Seton Hall University). We shared our experiences together: missing major family events because our sons can't handle them, not being able to get a babysitter, not being able to go out alone with our husbands, our struggles to get our kids to try new things, our struggles to get our kids to take a bath... the similarities were uncanny. Yet at the end of the meal, Suzanne turns to ME and asks me, "So, what's your plan?"
I am not star struck anymore, not because Suzanne and Kerry are not superstars in my eyes, but because I feel blessed instead. I am unbelievably blessed to have had the opportunity to make two new and amazing friends! An evening that I thought would bring me a tip or two of advice resulted in my witnessing a wonderful friend receive such a well-deserved award, eating "strange pizza" (Kerry made me do it!) and finding a new guiding light at the end of this puzzling journey. I can only sum it up in two words:
"THANK YOU!!!!!"
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| Meeting Kerry |
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| A toast to Kerry's award! YOU ROCK, MY FRIEND!!! |
Tuesday, November 13, 2012
From a mom to you...
PLEASE, PLEASE READ THIS AND PASS IT ON!!!! It's from the Autism Speaks blog...
Posted: 24 Oct 2012 09:23 AM PDT
This blog post is by Janet Amorello. Her son Sam has autism and she writes about her experiences on her blog, Blending with Autism.
I sat near a young mother recently. Though I didn’t mean to, I found
myself listening to her conversation. Clearly delighted by her child,
she extolled his brilliance and charm. At the risk of bragging, she
admitted her son was well beyond all his peers. He may even have leapt a
tall building in a single bound, though I am not positive she said
that. I am certain in the ensuing weeks he’s learned twelve languages.
Or more.
I couldn’t help but smile at the little cherub nearby who sat
blissfully unaware of his great prowless. That mother’s delight in her
child made me smile too. I hope he is every bit as brilliant she thinks.
I hope he can perform magical feats. One day he may hold our collective
futures in his hands. I'd be foolish to hope otherwise.
I have a favor to ask of you, mother of the perfect child.
I ask you instill in your child a compassionate heart as well as an
open and inquisitive mind. Teach him to be patient and kind and to
fearlessly pursue all that is right. Bless him with acceptance of all
people regardless of origin and ability. Show him how to appreciate
their achievements no matter how small. Help him develop an eye for
beauty in even the smallest of things. Stress the importance of giving
back as much as he takes. Share with him the value of a smile.
Teach him to treasure each living creature and to value every life. Let
him know it is ok to make a mistake and honorable to admit and learn
from it. Help him to understand he won’t become more by making another
less. Teach him to resist judging what he doesn’t understand and perhaps
even what he does. Let him know he is no better – or worse – than
anyone else.
Teach him to use his gifts wisely. Whether his accomplishments are
grand or small, provide him with the tools to leave our world a better
place. A place where your son and my son might one day peacefully
co-exist. Maybe even be friends. You can show him the way, mother of the
perfect child. I know you can.
Thank you from the bottom of my heart,
Sam's mom
Sam's mom
Wednesday, October 3, 2012
About the new diagnostic criteria... from NIH
New Autism Criteria Will Have Minor Impact: Study
Most children should still be eligible for care, researchers say
TUESDAY, Oct. 2 (HealthDay News) -- Parents should not worry that proposed changes to the criteria for diagnosing autism might leave their child ineligible for care, a new study indicates.
Researchers assessed the impact of the proposed changes, which were developed by an expert panel appointed by the American Psychiatric Association and are expected to take effect in May 2013.
Previous research had suggested that 45 percent or more of children who currently qualify for a diagnosis of autism would not under the new criteria. Those findings caused widespread concern among parents who depend on state-financed health services for their children, The New York Times reported.
However, this latest study concluded that only 10 percent of these children would be excluded under the new criteria.
"I know that parents worry, but I don't believe there is any substantial reason to fear that children who need to be diagnosed with autism spectrum disorders, and provided with vital services, will not be included in the new criteria in this updated manual," said study senior investigator Dr. Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital's Westchester campus, along with its affiliated medical schools Weill Cornell Medical College and Columbia University College of Physicians and Surgeons.
The study is the largest to date to try to determine the effects of the new diagnostic criteria for autism. It was published in the Oct. 1 issue of theAmerican Journal of Psychiatry.
Lord and her colleagues looked at 4,453 children currently diagnosed with autism and found that 91 percent of them would still qualify for the diagnosis under the proposed new criteria. Many of the remaining 9 percent would likely qualify with additional input from their doctors, the study added.
The proposed changes are designed to better identify autism and to distinguish it from other conditions, the researchers said.
The overall issue with the current criteria is "not that a lot of people are diagnosed with autism who shouldn't be, but that there is a lot of confusion because the criteria were not very accurate," Lord, who was a member of the panel that proposed the new criteria, said in a hospital news release.
She explained that in developing the new criteria, the panel "deliberately added and organized things to try to bring in and better address the needs of people with autism spectrum disorders (ASD) of all developmental levels and ages -- including girls, who were not represented as well as they should be in" the current criteria.
The goal of the new criteria "is to better describe who has ASD in a way that matches up with what we know from research, which predicts who has the disorder and also reflects what clinicians are actually looking at," Lord said.
Autism spectrum disorders cover a range of complex neurodevelopmental conditions that are characterized by social impairment, communication difficulties and restricted, repetitive, and stereotypical behavior patterns, according to the U.S. National Institutes of Health.
An estimated one in 88 American children has an autism spectrum disorder, according to statistics from the U.S. Centers for Disease Control and Prevention.
SOURCE: New York-Presbyterian Hospital/Weill Cornell Medical Center/Weill Cornell Medical College, news release, Oct. 1, 2012
HealthDay
Copyright (c) 2012 HealthDay. All rights reserved.
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A prescription for peace...
I received this devotional yesterday and I thought it was just too perfect NOT to post. I hope you will find it helpful in your journey!
Blessings!
DC
Blessings!
DC
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October 2, 2012
By Tracie Miles |
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Philippians 4:6-7 (NLT)
Despite attempts for more than a year to figure out what was wrong with me, doctors could not identify a serious medical condition. It's not that I wanted something to be wrong. I certainly didn't need anything else to stress about. I was desperately seeking a prescription for peace.
Looking back I can see the main culprit for my stress was my job. Overwhelming expectations and the impossible perfectionism my supervisor demanded took their toll on me physically, emotionally and spiritually. His harsh criticisms and comments made me feel inadequate, and my self-esteem plunged to an all-time low. Chaos swirled around me, stress raged within me, and my health continued to decline. But I didn't recognize the cause.
When a medical diagnosis continued to elude doctors, I believed the lie that excessive stress was normal and I needed to learn how to live with it.
Eventually my stress reached a dangerously high level, and I began to wonder if this was the way God intended life to be. I wasn't even sure if the Bible talked about stress, but I was desperate, so I searched God's Word for answers. Something had to end, and I didn't want it to be my life. I came across Philippians 4:6-7. "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." (NLT)
Although I had read these verses before, it was as if a light bulb came on. I was tired of worrying. I was yearning for my heart and mind to be protected and healed. I was longing to control my stress, instead of it controlling me. And I was desperate for peace.
As the words of these verses washed through my soul, I realized I'd been depending on people to diagnose my problems instead of seeking a remedy from God. Going from doctor to doctor, I had overlooked the only One who had a prescription that could heal — Jesus Christ.
As I prayed for the ability to stop worrying and spent more time processing my stress with God, I thanked Him for His provision of my job. And I asked if it was time for me to leave. I needed to be rescued and admitted He was the only One with the power to do so. I committed to trusting His ways, even if I didn't understand them. Peace didn't come overnight, but it did come. Not because my circumstances changed, but because I tapped into His peace each day in the midst of less-than-peaceful circumstances. Gradually I felt God mend my heart and replace my stress with His truth and love. And when He made it clear after a few months that I was to resign, I was equipped to handle the new stressors that came with that decision.
If you need a prescription for peace, I encourage you to let your thoughts dwell on God's promises and rest in His presence as you pray. Ask Him to help you release your worry. Praise Him for the good things He's done, and talk to Him about the problems you're struggling with. Seek God's will for every area of your life and commit to trust Him enough to make changes as He nudges you. True peace comes when we trust God and seek rest in Him, not when life is conflict-free. A daily dose of God's presence and promises is the best prescription for peace.
Dear Lord, I am stressed. I know I need a change in my life, and I am ready for the prescription for peace that only You can offer. Fill me today with a dose of serenity that I cannot find anywhere else but in You. In Jesus' Name, Amen.
Related Resources:
Do You Know Him?
Do You Know Him?
Today's devotion is based on Stressed-Less Living: Finding God's Peace in Your Chaotic World by Tracie Miles which releases today! If you purchase the book before October 7th you'll receive 7 GREAT FREE GIFTS to further help with managing stress! Click here for more info.
Visit Tracie's blog to sign up for her free "10 Day Stress Detox" and enter to win a copy of her new book, Stressed-Less Living!
Would you like to bring the message of this devotion to the women of your church? Click here to find out how to bring Tracie's Stressed-Lessed Living to your next event.
Reflect and Respond:
How can you trust God in your circumstances and receive His prescription for peace instead of handling problems in your own strength?
How can you trust God in your circumstances and receive His prescription for peace instead of handling problems in your own strength?
Ask God if you need to make changes in your life. If so, pray about the next steps.
Power Verses:
Psalm 107:19, "'Lord, help!' they cried in their trouble, and he saved them from their distress." (NLT)
Psalm 107:19, "'Lord, help!' they cried in their trouble, and he saved them from their distress." (NLT)
John 14:27, "I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid." (NLT)
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