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Our son has Asperger's Syndrome.

May 1, 2009

At the most recent event for a program called YouthCare my wife and I spoke publicly about our son’s battle with Asperger’s Syndrome, for the first time. Here is the text of my wife’s speech the other night.

I have given many speeches over the years.  This is one is by far  the hardest. It is one thing to speak from the heart about your own experiences and another to speak from the heart about one of your children.

When our third child was diagnosed with Aspergers Syndrome almost two years ago all I can say is that my heart was aching. A child that I had raised to that point like his siblings, I couldn’t understand how he could be so different.    I was in the doctors office when I heard the words ” On the spectrum of Autism” Aspergers.

For one brief second the puzzles pieces made sense and there was relief.  What followed was such a sense of loss, pain and guilt it’s hard to describe.

I remember for days thinking to myself “just write down” what I was feeling.  The emotions were so strong that I became numb.  I struggled so hard as a parent to reach Grant and I was now sure that I would never know how to communicate with him.

The school year was just beginning and I went in for his IUP meeting.  I was so overwhelmed I cried the entire time.  I didn’t know how to handle Grant and I was looking for anyone to tell me “Hey, no need to worry, we can help”.

I starting sitting up nights, scouring the internet, downloading anything I could find on Aspbergers. Digesting in small bits as it was all so overwhelming.

Some people read everything they can get their hands on, all I wanted was the comic book version. Which by the way I have never found.

That fall of 2004 we went on to win the World Series and I just tried to keep distracted.  I really wanted help but honestly I just wasn’t ready for it.  I tried to watch Grant and see what I could do .  I listened to the teachers and administrators give me tips and techniques to help Grant at school.

It wasn’t till after Christmas that year when I decided to take the schools advice and reach out for help. I was ready to accept this different life and the new adventures it would bring to us. I spoke to other parents who were always eager to share problem solving that worked for them.

One name that kept coming up in conversations was this wonderful camp called Youth Care.

We tried summer camp before his diagnosis and every day I would have a full report from my daughter on what Grant had done to make the councilors mad.  I was mortified and humiliated that he just couldn’t follow there rules.  I knew that I couldn’t go through another summer like that.  So I made the call to YOUTH CARE.  Grant and I went to the interview meeting.

I have to tell you that I was so nervous that he would act normal and they wouldn’t accept him.   Needless to say it took 30 seconds for them to agreed he was a fit. As he walked in he touched every single object in the room, never looked her in the eye, and couldn’t answer any questions due to being so distracted in a new room with so many new shiny things to look at, and touch!  Hooray we were in.

I really had no idea what YOUTH CARE had to offer as I had heard that kids and parents learn so many coping and life skills and this camp was second to none for kids like Grant.

I felt relief and empowered that I was making the first good decision for him.

The day of camp orientation arrived.  I listened as he met his councilors and watched as he interacted with the other kids in his group.  They explained to him the great things that he would be doing that summer and he was excited.  He counted down the “Sleeps”  until camp would start.

The first day arrived.  He was up early and checking to make sure he had everything he needed.  I pulled into the line and watched as each kid was greeted by his councilor.

When our turn came Grant jumped out of the car almost forgetting to give me a kiss, which he never forgets. The camp councilors were so warm and affectionate in greeting each child that morning, this was truly going to be a place Grant would be accepted, and welcomed.

He walked away and I started home.  I drove out of the campground and without warning tears were flowing down my face.  For the first time since this journey began I was crying tears of joy.  Grant was safe and most of all wanted.  He would be surrounded by people who would watch out for him, understand him and be patient with him.

As a mother that is all I wanted.  I learned strategies that would help both Grant and our family.  I was open to suggestions and eager to try the new things that we learned would work so well for Grant.   Grant had a wonderful summer.  A super summer camp experience.

Curt and I are so grateful that Youth Care exists and for all the wonderful people that work so hard to help our children.   What we hope to do  by sharing  our family story is to help even more families who do not have funds to this amazing opportunity to have that chance.

Take it from two parents who are walking this journey with our son.  If you have the means to give a child and his family a chance it is the biggest return on your investment that you will ever make.

Thank you and God Bless

Shonda and I are truly grateful to Scott McLeod the camp director and want anyone affected by this to reach out to the camp and any of the other services provided to see if there is help for you or your children. This is a daily battle that will never end. Much like most everything else I look at this in only one way.

Life often times gives us ‘choices’ when it really doesn’t. Our son has Aspergers, there is nothing we can do about that other than turn over every leaf, in trying to make sure we as parents provide every possible outlet and resource to him, and to us as parents, to make the world a place Grant can thrive and succeed in. Our son is brilliantly smart (as many children with Aspergers are) and way ahead of many of his peers in certain academic areas, but there are social issues and to many people those have far more potential to be harmful than anything else in a young childs life.

This is the opposite of a ‘why us’ or ‘poor us’ story, this is the first chapter of a story that will see us take on a charitable cause, and ask each and every one of you for help (whether that is time or money, I don’t care, both are needed) as we move down this path in our lives.

This city has never shied from helping Shonda and I in every charitable endeavor we’ve taken on and we are forever grateful to all of you for everything you’ve done.

Please don’t hesitate to contact me through this blog if you are looking for help, or offering it.

Thanks

Curt and Shonda Schilling

85 Comments leave one →
  1. Sheryl Sussman permalink
    May 1, 2009 10:18 am

    Thanks to both of you for sharing your story. I can’t possibly know what it’s like, as I don’t have kids of my own. But I do know that by sharing your story, you will be helping others that are in a similar situation know that they are not alone.

  2. Josh Habib permalink
    May 1, 2009 10:30 am

    I appreciate you using this forum to share your family’s experience with Aspergers. I’ve got 2 nephews and a cousin with Aspergers and it is indeed challenging. But they are beautiful, wonderful kids, as I’m sure your son is. Its also refreshing that you and Shonda did not “blame” anyone for your son’s condition (e.g., vaccinations). Good luck and thanks for bringing attention to this cause. Obviously there is not a “cure” for Aspergers, but I do believe that the more attention and resources put forth, the more we will be able to understand and help these children. Glad you guys are staying in the Boston area.

  3. Rhayader permalink
    May 1, 2009 11:01 am

    Great post Curt, thanks for sharing. Grant is very lucky to have parents who love and care for him so much; many kids in this world grow up without anything close to that kind of support structure. It will make every difference as he matures and has to find his own place in the world.

    Best wishes to you and your family.

  4. May 1, 2009 11:14 am

    Kurt and Shonda,
    I was caught off guard when you spoke of your son grant on weei,a note was struck when you admitted that you were sure something was wrong but kept it quiet. Obviously I understand why you had to, but in our case (my wife LIsa and I) we just had a very hard time accepting that our son Chris Jr.(CJ), has a severe case of cerebral palsy due to having a stroke in the whomb during the birth process. I understand autism is very different from our strife but still totally relate with all of your words you both. Curt, I have always enjoyed hearing you speak and your honesty as well as the obvious respect level for you have for your wife which is very inspirational. I am just a regular guy in beverly mass and am fealing righteous about sending this to you today, all ass kissing aside. Thanks for sharing with us about Grant and by the way I could tell you 38 more stories similar to how insensitive those coaches acted towards the boy who you embraced and is fortunate to have you coaching him. I will never forget my little league coaches, what a fragile time that is and I share your passion about how important it is to keep it all about the kids.

    take care,

    Chris Dennesen
    978 479 2430
    Beverly Oceanfront Mass

    ps – if shonda would like to speak with my wife I think they have alot to share with eachother and we will share everything we know about alternative
    therapies we travel to Canada to learn, and I also have a friend who I played high school baseball with who’s wife started a sensory therapy in Danvers mass who a friend of mine who a grew up with recently traveled from Florida to try the drop table therapy that helps autistic kids.

  5. Matt permalink
    May 1, 2009 11:34 am

    You should ask why you. Because you have the ability to educate people on raising a child with Aspergers. Our society does value celebrity over substance, so you can take that negative part of our values and use it to really help those in similar situations. I never understand those who do feel sorry for themselves in times like this. Your child is a blessing from God. This is your opportunity to show all of those who watch you that this is not a challenge, rather a child being blessed by the Lord into a situation with parents who will understand him and provide for his well being. Not to mention into a home with a man who has used the attention garnered to him to bring attention and help to those with ALS. There are no coincidences, Curt. God placed your little guy into your life for a reason. And I think you know what that reason is. Good luck to you and your wife, and may God continue to bless us all.

  6. May 1, 2009 11:40 am

    Curt,
    Thanks for posting that, its an increasing situation that parents have to deal with everyday in this country. My wife and I went thru the same thing 8 years ago with our son who is also diagnosed with ASD (Aspergers)

    At the time, I had recently retired from the US Army and as a Green Beret officer, I thought there was nothing in life that I couldn’t handle. Well, boy was I wrong on that one, I, like many parents felt hopeless when we did all the tests and saw all the doctors.

    Like you we were lucky that we found someone to help. HMEA (Horace Mann Educational Associates) out of Franklin was a godsend. The folks there worked with my son about 7 hours a day while at his daycare. To see him come out of his shell and start to interact with his peers, surroundings etc was amazing. The people there are truly awesome, and they not only helped Mario but us as parents. We became insatiable in our quest to learn as much as we could about his condition. Going to seminars, reading tons of books etc.

    Today Mario is a very well adjusted kid who is ten and goes to a “regular or typical” 4th grade class. He gets pulled out for resources but its great for him to interact with kids his own age. He learns every day little things that make his life, socially a little more comfortable. Sometimes, his take on things is absolutely hilarious, as I’m sure you know, that kids with Aspergers take everything so literally!

    My wife and I now feel we are blessed,if anything it has brought the three of us much closer than we could have ever dreamed of. We also try to give back to the people at HMEA every year. This May we are doing a “Walk for Autism” at the EMC plant in Franklin on the 17th. Its always fun and they have food, activities etc for the entire family. HMEA also is involved with the Red Sox on Disabiltiy Awareness Day. Last June 7th, Mario was the honorary Bat-Boy for the Sox, a honor he will reprise on June 20th of this year in a game against the Braves. He is also psyched that he will get to say “Play Ball” as well.

    We will definitely check out Youth Care and will see what we can do to support them as well. Please tell any of readers that HMEA can also be of great help to them as well.

    Thanks again for sharing your story, you’ll find that as time goes on, you will be meeting some amazing folks in your efforts with this condition.
    All the best to you and your family,

    SteveB

  7. karl gerds permalink
    May 1, 2009 11:43 am

    Curt,
    You and all of your family have not just my sympathy but my respect and admiration. Best wishes to you all.

  8. May 1, 2009 11:46 am

    Curt,

    It’s really amazing how worlds can intersect.

    Conservative. Morally centered. Forty. Ballplayer. Pitcher. Involved in software design. Kids. Child with Asperger’s Syndrome.

    Am I describing you. No. That’s me.

    My wife and I are also traveling that similar path as you and your family. Our daughter was diagnosed with Asperger’s Syndrome at 3–she’s 9 now and has really come a long way, thanks to a lot of different people who came into her life at precisely the right times.

    I often think of something one of my daughter’s teachers (a great one, I may add) said:

    “When you’ve seen one kid with Asperger’s–you’ve seen one kid with Asperger’s”.

    Let me know if there is any way that we could help each other or others who are also traveling this road. One in 166 or 150 or one in less than 100 (for boys) is far too great a number for the amount of attention and money that should be focused on this issue.

    Craig

  9. Klark permalink
    May 1, 2009 11:56 am

    “Curt and I” — cut/paste issue. 🙂

  10. Nancy Travers permalink
    May 1, 2009 12:16 pm

    Dear Curt and Shonda,
    Curt, I heard you on Dennis & Callahan this week, and of course my ears perked up when I heard you speak of AANE. My husband and I have an 11 yr old son, Johnny, who was diagnosed with AS when he was 4 yrs old. I too felt as if my world had been completely turned upside down, when the word “autism spectrum- Asperger Syndrome” was the diagnosis given to us by our Pediatric Neurologist from the Franciscan Childrens Hosp in Boston. How could this be? I went into the proverbial ‘denial closet’ for about 6 months, and could not even say the word autism out loud to friends and family – fearful of what ‘other people’ would think of Johnny and us.

    And then that one day arrived, when both my husband and I rolled up our sleeves, and dove into the learning process and the advocate roll. I started calling social workers, academic professionals, special ed teachers, reading every AS book published, as well as attending local seminars by the Tony Attwoods of the world in Boston regarding AS. Dania Jekil and AANE have been an absolutely wonderful support service for us, and I was so pleased to see you will be the Chair persons this year!

    I am happy to tell you both that Johnny is doing terrific! He attends public school -5th grade in Sandwich – is actually in a musical this year, and was selected to be in an Art Show a few weeks ago. Last summer, he wanted to go to Fenway for a game, but was concerned about how ‘loud’ it would be for him, and that he didnt think he could sit for 3+ hours. I took him myself and got him an aisle seat, and I have some of the most wonderful pictures of him cheering, that I will treasure- always!

    I will let you know that this doesn’t just affect your one child, but the whole family. My other son, Cameron, 9 yrs old is a completely different child than Johnny. He loves to play sports, and is quite social. (His first Red Sox shirt that he wore morning noon and night was yours, Curt!!!)
    As the years went by, Cameron noticed that his brother “was a little different”. And so, that is another whole issue on dealing with the disability. We went as a family to a Social worker to discuss as a family all of the dynamics that you encounter with a disability in the family. I strongly recommend this. It allowed us to discuss this as a whole family, and look at the individual accomplishments of both our kids – rather than the weaknesses.

    I applaud you both for your constant work in the New England community, and for once again bringing this issue to the public. There are so many challenges ahead. Advocating for additional services that should be covered under the school programming, or insurance are a huge issue. My husband and I spend over $250 a month in Social Skills for him, which in my opinion, behavioral therapies should be covered by insurance. Many families can’t afford the much needed social skills training that these kids deserve to have.

    My best to you both and your family in the future. With you as supportive AS parents, Grant will no doubt reach his full potential.

    Kind Regards from one of your fans -both on and off the field,
    Nancy Travers
    19 Weeks Pond Dr
    Forestdale, MA 02644

  11. BCC permalink
    May 1, 2009 12:39 pm

    Thanks for sharing this, Schilling family. I’m especially glad that you realize that you are in a unique position to extend your experiences to help others who have fewer resources at hand.

  12. May 1, 2009 1:21 pm

    Thank you for sharing your story with everyone….my nephew has the same diagnosis, and to hear that you’re embracing the diagnosis and working towards enabling and integrating your son so that he can have a happy and capable future in life is so great to hear.

    So many parents are worried about causes, blame and “cures” – that sometimes the child themselves gets lost in it all. There is a tendency to wallow rather than empower. My sister is not that type of parent either — she’s his advocate, and ensures that he is seen, heard and respected as a child first and foremost — and not just labeled as a child with a special need.

    I am a retail store owner, and would be happy to donate gift baskets and specialty items to fundraising efforts.

  13. May 1, 2009 2:01 pm

    My nephew has Asperger’s and yes…it has been tough on his family at times. But he is a junior in college now. He has great grades. He enjoys heated debate, and he thinks he wants to get involved in law or politics. There are still the odd awkward social moments for him. Yet he is aware of that and he is trying hard to adjust. It’s not easy, as I’m sure you know.

    Anyway, I just wanted to wish you the best for your son and your family. With the proper support, I’m sure the good times will far outweigh the bad times.

  14. Rocco Claroni permalink
    May 1, 2009 2:04 pm

    My oldest daughter, Kelsie was seeing a psychologist for social issues years ago and he also diagnosed her with a mild form of Asperbergers. But Kelsie did not fit all of the Asperger’s criteria except the social issues. She is now 17 and still has social issues with her peers but not with adults. Sorry to hear about your son. Tell Donald and Patsy I said hi and good luck to both of you. Rocco

  15. RachelC permalink
    May 1, 2009 2:40 pm

    You and Shonda, and, more importantly, Grant will be in my prayers. Thanks for sharing your story.

  16. nicole gorman permalink
    May 1, 2009 3:00 pm

    Thank you so much for making your personal battle public. For you to become public benefits us so much. Your voice is heard loud and clear! My son also has Asperger’s. He was only 7 when we got the diagnosis. I like your self was glad to have a answer.NOW Everything make sense. My Michael is a wonderful kind hearted passive boy. Right now he falls under the radar with the social cliques. He is in the 3rd grade and like your son has a very high IQ. He is currently in public school. We are struggling with his IEP because being so bright and with the MCAS tests there is not any programs for the gifted. I was curious if you have any information on schools that are better for Asperger kids??I need to start know before it is too late he is already shut down with 3rd grade. If you have any information it would be very helpful. On a funny note I write down all the quirky thing Michael’s says or does and keep it in a note book. We get a lot of laughs as a family, the Gorman Motto is “YOU KNOW I HAVE ISSUE” NICOLE

  17. Jere permalink
    May 1, 2009 5:27 pm

    Curt and Ronda,

    What a wonderful speech. My sister in-law was at the dinner and told my wife (her sister) about your talk. I wish we were there to hear it.

    I am the father of 4, and my oldest son has Aspergers. As I read your speech I had tears in my eyes, as my wife and I have been, and are in the exact same place.

    Our stories are incredibly similar. We’ve learned so much over the last 15 years. Our son is a beautiful human being. He is wired completely differently than his 3 sisters, and we have had many trials and tribulations over the years. But he is a smart, kind, caring kid.

    I will research and learn more about camp Youth Care. We found a similar camp down in NC called Talisman. Amazing place. Our son has gone there now for 4 years, and he will be a CIT there this summer. I’ll never forget the first time I dropped him off. I cried so hard as I drove off, worrying about how he would do. When I returned 2 weeks later to pick him up, I cried even harder when I heard and saw how well he had done, and he told me himself how much fun he had had, and that he had made friends with so many kids. It was probably one of the happiest days of my life.

    I am so happy to hear that you and your charitable foundations will be active in raising awareness and money for aspergers here in Boston. I know both my wife and I will be active participants.

    Good for you Ronda and Curt. Thank you!

  18. May 1, 2009 6:46 pm

    Curt, Shonda, Grant and all the Schillings

    It was with a combination of sadness, joy, hope and prayer that we read this post. As one who has dealt with various medical issues from numerous people, both strangers and family alike, we can tell you that the individuals who are best able to handle these curve balls life throws at us are those who have a nurturing support system in place. Life is so very often a mystery and the “why us” question is so easy to ask yet at times impossible to answer. It is so encouraging to read that you are prepared to turn this negative into a positive that will, we believe, ultimately result in more love and joy then can be imagined. The saying goes “our children are our future” yet without a strong base set from the past the future for some can quickly erode. It appears obvious the entire Schilling clan has that strong base and a bond that will keep you together during the years to come. Will there be challenges? Of course. Will there be frustration? Undoubtedly. But through it all, your bond, your base, your strength will see you through. My Dad was an avid baseball fan and there was simply no team like the Red Sox. More important he was a lover of life, a man who always tried to see the good in people and met any challenge head on and with dignity. He imparted these traits in me and even though he passed away he helps me to this day, along with my Mom who is still very much alive and caring for my sister. I hope you are able to meet this challenge with courage, love, and the gift of family…..something tells me you will. God Bless.

    Tim & Lynn

  19. Andrea T. permalink
    May 1, 2009 9:16 pm

    Curt & Shonda,

    I, too, am the mother of a child with Asperger’s. My child is now 24. We have had our ups, our downs, our worries, and our joys. I thank you for sharing your story.

  20. May 2, 2009 12:15 am

    Curt,
    My husband immediately called me in to hear you on WEEI when you mentioned your son and his diagnosis. We received my son’s PDD-NOS diagnosis in 2003 and have been huge advocates for autism ever since. At 6 years old he’s just recently started talking and is a whiz on the computer.

    Our family’s business, The Mendon Drive-in, has raised funds and walked for Autism Speaks for the last 4 years. Our family’s support has made a huge difference in our lives. We’ll be having a family Autism Day on July 12th to raise funds and share the day with all who support these children. Please consider joining us on that day as getting together with other families truly helps you appreciate how Autism has made your son unique and special.
    Take one day at a time and stop to enjoy the little things that Grant achieves. The grieving that we all do upon hearing those words will fade away and you’ll replace your dreams and expectations with new ones.

  21. Jim permalink
    May 2, 2009 6:38 am

    Thanks for the post Tim. Grant is very lucky to have such caring parents as you and Shonda. I happen to have a friend who has Aspergers, is 51 years old, incredibly successful in an Information Technology job. He is well respected for his skills, and he and I have been running partners for about 5 years. We have run several marathons together. He has a very difficult time in social situations, but his honesty, loyalty, and sensitivity is a breath of fresh air. I thought of him as I was reading Shonda’s article. P.S. we miss you in a Boston uniform Curt, THANK YOU for all that you did for the Sox and their fans. Your taking the risk of surgery in 2004 on your ankle has to be one of the alltime sports stories in baseball history, and does NOT get enough play….it will.

  22. Jim permalink
    May 2, 2009 6:40 am

    Thanks for the post Curt. Grant is very lucky to have such caring parents as you and Shonda. I happen to have a friend who has Aspergers, is 51 years old, incredibly successful in an Information Technology job. He is well respected for his skills, and he and I have been running partners for about 5 years. We have run several marathons together. He has a very difficult time in social situations, but his honesty, loyalty, and sensitivity is a breath of fresh air. I thought of him as I was reading Shonda’s article. P.S. we miss you in a Boston uniform Curt, THANK YOU for all that you did for the Sox and their fans. Your taking the risk of surgery in 2004 on your ankle has to be one of the alltime sports stories in baseball history, and does NOT get enough play….it will.

  23. Erin permalink
    May 2, 2009 8:27 am

    Curt –

    Thank you so much for sharing your story. My best friend who I have grown up with my entire life has asbergers syndrome, (however he does not know…I was told by my mother but his parents have never told him), and so I have read just about every book there is on it. It is a hard thing to work with, I have found, as often times I would want to do something that was just way out of his comfort zone and he would go into defense mode and refuse to do it. But I have found many ways to work around it and if you need any help I would love to offer it. I believe and have been told by others that I have a special gift for working with children with asbergers. God has prepared me for it by giving me a friend with it!!!

    I am graduating high school this year and am going to college to become a special education teacher, specifically for kids with autism and asbergers. I wish you both the best of luck and will be praying for you and your son.

    -Erin D

  24. Brian permalink
    May 2, 2009 8:39 am

    Great story, and it’s good to know that Grant is doing great as well.

    I’m curious… does Grant play World of Warcraft? The son of a friend of mine, who has Aspergers, plays, and it has really helped him with socialization, and other interactive skills. I just wonder if Grant plays, if you’ve noticed similar results.

  25. Jon Fink permalink
    May 2, 2009 9:13 am

    Curt and Shonda-hang in there! Our son is now 10 has AS and is doing really well. We found that early on physical / occupational therapy was really important. Its easy to access (especially for a major league baseball star!) and makes a big difference right away. After that hit social skills. Keep at it..its a long slow cumulative effect but over time its the real difference maker. The intelligence is the savior for AS. You WILL be fine! BTW-I wish Curt still pitched for the Phillies.. Feel free to contact me if I can be of help.

    Jon Fink
    Philadelphia

  26. May 2, 2009 12:20 pm

    What My Son Has Taught Me

    When my son was diagnosed with autism there were a million things going through my head. One of the most prevalent was the thought that he would never be a normal boy and that all of my dreams had been wiped clean. I felt as though my little boy would never lead a “normal” life and that nothing good could ever come of this “autism”.

    That was 13 years ago. In those thirteen years I have learned many valuable lessons from my son. I would like to share some of them with you.

    My son has taught me compassion. I have eaten so many words that I should be full forever. I will never again look at a child having a meltdown in the store and think that he needs a good spanking or that his mother is not a very good mother. I will look into her weary eyes and try to convey my understanding. My son has taught me that.

    My son has taught me honesty. He never sees a good reason to lie. He is probably right. He will never break anyone’s heart, steal from another the things that they have worked so hard for, or get something that he doesn’t deserve. He won’t lie to protect himself from punishment or to get out of something. He will take the consequences of his actions because he simply doesn’t see that there is any other way to live. Truthful is the only way to be and my son has taught me that.

    My son has taught me tenacity. So many days I would like to just go back to the way that my life used to be. To not have to research, advocate, call, write, get to know my legislators, get to know my administrators, or fight one more battle. But, if I don’t, who will? Who will be the person that makes sure that he lives up to his fullest potential, if I don’t? My son has taught me to never quit.

    My son has taught me to be supportive. Before he was born I was happy keeping my house spotless, my garden weedless, and my life simple. Because of him I have learned the value of support. Giving and receiving. I have met wonderful people and I thank God every day that He brought us together. I constantly hear that God doesn’t give us more than we can bear. I believe that He does. I believe that He also gave us each other knowing that we would support each other and help each other get through this. He also was so wise as to give a scientist the idea that we would be needing Lexapro and that it needed to be developed.

    My son has taught be to be assertive. I had always believed that the experts knew everything and that we should blindly place our faith in them. I now know that is simply not true and that without questions there can never be any real answers. I have learned that we will never be given anything without making it available and that requires a lot of diligence and hard work. I have learned that we can put a man on the moon, but we can’t teach the engineer, that made the shuttle, social skills.

    My son has taught me charity. He is willing to give anything that he has to someone that has less. He would give his most prized possession to another child. He would move a homeless person into our home. He would give his food to a hungry person. My son has shown me how selfish I can be and what the true meaning of a giving heart is.

    My son has taught me love. He loves with no conditions. In his eyes, I am the most beautiful woman in the world. In his eyes I am the most intelligent person on the planet. In his heart, I am the best Mommy that God ever created. Our lives are not what we had expected. He will never be the president of the United States. He will never be the CEO of a Fortune 500 company. He will never be a lawyer or a doctor. In reality, I have no idea what his future holds. But, at night when I lay down beside him and look into that angelic face, I can’t imagine him any other way.

    By Sherri Tucker

    President, Lee’s Summit Autism Support Grou
    http://www.lsautism.org

  27. Karin permalink
    May 2, 2009 1:44 pm

    Thank you for “coming out” about your son’s AS! I am the parent of a daughter who is 8 years old and has high functioning autism (HFA). Those who meet her now assume that she has AS, but that is not the case b/c unlike a child with AS, she had no naturally developing language or communication skills from birth and had to be taught everything from the ground up. Luckily she is very intelligent and ambitious, and now she has a LOT to say- lol.

    When public figures such as yourself “come out” as you did and share your story, the repercussions for private families like my own are huge and awesome. Suddenly, our issues are accepted and understood-and respected- by the masses who as recently as the day before rolled their eyes and snorted at descriptions of disorders such as HFA and AS. As annoying (I am being polite) and frustrating as this can be for me (that it takes a public figure to get people to listen), I try to concentrate on the positives that occur as a result of these public disclosures- and the positives are really immense and life-changing.

    I really respect and am grateful to you, your wife, and your entire family for sharing what so many are unnecessarily secretive about- with the entire world! Not only does it help to put an end to the ridiculous stigma and shame, but it also grants those who are dealing with the same issues an acceptance that we all yearn for.

    Thank you! I wish your son and the rest of your family the best.

    Karin F.

  28. Laurie Yule permalink
    May 2, 2009 2:26 pm

    My heart feels for you and Shonda and your children. My son, Michael, was diagnosed with autism just before he turned 3 and he is now 13. As much as a challenge our son can be, he is even a bigger joy. He too was the most fun loving child you’d ever meeting but everything else was missing, eye contact, reponsiveness, language and so on.
    As I heard you on WEEI speak of your son and the support you will bring to Autism, my heart again skipped a beat, knowing how much someone like you and Shonda give to the charities you believe in such as ALS.
    Welcome to our family and god bless!

  29. Bryan Dowd permalink
    May 2, 2009 10:21 pm

    Curt & Shonda
    Thank you for sharing your story; as a father of a 9 year Autistic son it is terrifying sometimes but very rewarding most of the time. I loved you when you were with the Phils and wish you and your family only happiness.

  30. May 3, 2009 1:35 am

    Curt and Shonda,

    I am a teacher in Vancouver, and have taught several students with Asperger’s. I can understand the daily struggles you must be going through. Thank you for taking on this cause to help those afflicted with the condition. All the best, and God bless!

  31. Dorothy Simboli permalink
    May 3, 2009 8:17 am

    Dear Curt and Shonda,
    My husband raced into the kitchen to turn on WEEI while you were sharing the Asperger’s/little league story. My 9 year old Aspie plays youth baseball here in Winchester (3rd season) and it has not been without it’s ups and downs. Fortunately, we have some wonderful neighbors one of whom has been my son’s coach for two years. My son also has some good friends on the team with him who help support him. He is there to learn the game and have fun and there are plenty of parents who share this view. It takes a village to raise a child–and a village with the big hearts to raise a child with an autism spectrum disorder. Thank you for supporting this cause and for raising everyone’s awareness of this disorder.

  32. May 3, 2009 10:30 am

    Curt i have a 8 year old son who has Autism. I know how you feel. to this day my son still does not talk. its a huge challenge but we are taking it one day at a time.

  33. Marion King permalink
    May 3, 2009 10:47 am

    Curt and Shonda,

    Thank you for sharing your story and putting your support behind YouthCare and AANE. My son is 10. He was diagnosed at age 5. It was, as Shonda said, a relief. The diagnosis brought grief and it brought intervention.

    I have enrolled my son in a camp called Camp Connect. YouthCare developed the program for a summer camp for kids with disabilities, called Handi-Kids. I think it’s fantastic that YouthCare is able to share their expertise so that more kids can benefit.

    Many families do keep secrets. I feel badly for the friend of the high school student who wrote in here. The Asperger’s diagnosis is not something to be ashamed of or to be hidden. His friend needs to understand himself, to “own” his diagnosis in order to be able to learn to meet his own needs and advocate for himself – especially as he leaves the relative protection of high school.

    My family has been a wonderful support for me and my children. Unfortunately, I am unable to access the most effective services for my son because I am a single mom in poverty. I am doing what I can, going to school to earn a degree so that I can support my family. The hardest part for me is that while I go to college, the early years which are so important for quality, intensive intervention, pass us by. I try desperately to see the cup as half full, but it is so very hard.

    Yesterday, my son was playing a pickup game of baseball with neighborhood kids. He came home crying. It was the first time that has ever happened and my heart broke, as any mother’s would. From what I can gather, he was waiting at home base for the short stop to throw him the ball and the runner smashed straight into him, knocking him to the ground. He did not know that he was not allowed to block the base. He had no idea. (Meanwhile, he knows Red Sox stats like there’s no tomorrow.) His perception of the interaction was that the other boy intentionally hurt him. He was so stuck on the idea that he could not process a more logical explanation. He thought that the no-blocking rule was made up as an excuse. What should have been a normal moment turned into a heartbreaking moment because he could not socially understand.

    I want desperately to get him the interventions he needs. At the close of your blog post, you welcomed people looking for help. Our family needs help. I have been in touch with AANE. They have wonderful recommendations, awesome experts, but they can’t provide the interventions we need. There are wonderful experts in AS in the Boston area, but most don’t take our insurance, some don’t accept any insurance at all. I have sought out scholarships and grants, but my son needs ongoing intensive support. I sign him up for social skills classes and ask for the fees to be waived, and I have been lucky with this, but it just hasn’t sunk in with my son. I am feeling discouraged.

    If you know of some way I can find good, consistent, intensive social therapy for my son, I would be so grateful to hear from you.

    Marion King
    marion.king@comcast.net

  34. May 3, 2009 11:56 am

    Curt and Shonda,

    A friend and client of mine (from the AANE) had sent me a link to the WEEI audio of your interview on D & C this week. She sent it to me because I have coached her son who has Asberger’s Syndrome and she’s know my heart in regards to working with kids with any coordination disorder, AS or HFA.

    Below is my response to her after listening:

    ———–
    “Wow. Just listened. Wow. You know what…that is EXACTLY why I am opening a fitness and conditioning center for kids. I have seen what Curt spoke of even on my U8 soccer team from other coaches and even my assistant in regards to a boy who has AS. This boy has been with me for 3 years now and is also taking my movement and conditioning class.

    The other dichotomy that is evident is that the “best coaches” (a term I use loosely in regard to youth coaches) only want to work with the most “talented” kids. The fact is the majority of the young children are the ones who need the help.

    I spoke to another mom yesterday who found me via SEPAC and both of our frustrations revolved around there being no alternatives for socialization and exercise for kids have coordination disorders, or are on the spectrum. It’s maddening! Sorry for the rant…

    Thank you for sharing. I would love the opportunity to converse with the Schillings. I want them to know that there is a movement within the fitness industry that is taking the “training” of kids as little adults or athletic prodigies and turning it into caring and coaching kids to help them develop as human beings.

    This audio moved me.”
    —————-

    God Bless you and your family.

    If I can be of any assistance please feel free to contact me directly.

    Dave Gleason CSCS YCS 1
    coachdavegleason@gmail.com
    781-706-1072 (Office)

  35. May 3, 2009 6:21 pm

    Thank you so much for sharing your story. After my own son was diagnosed back in 1993-4 (at age just 9) I started what became the OASIS (Online Asperger Syndrome Information and Support)

    My son is now 24 and will be receiving his MS in November and will, in Sept ’10 be moving on to work his PhD.

    In a few months OASIS will be merging with MAAP Services http://www.maapservices.org. MAAP was founded by Susan Moreno the parent of a daughter diagnosed with autism and was one of the very first organizations providing support and information to families of children on the higher end of the Autism Spectrum. OASIS at MAAP will remain at the http://www.aspergersyndrome.org

    Parents have been key in in promoting awareness of Asperger syndrome and related diagnosis (some have posted here), so I want to thank you again and welcome you to our very large extended family.

    If there is anything we (Susan Moreno, director of MAAP or myself) can do to help, please let me know.

    Barbara Kirby
    OASIS (Online Asperger Syndrome Information and Support)
    co-author, THE OASIS GUIDE TO ASPERGER SYNDROME (Crown, 2001, 2005)

  36. Paul McClintock permalink
    May 3, 2009 10:19 pm

    Curt,
    I felt a lot of your pain as parent of a PDD/NOS diagnosed child as I am living it this year in coach pitched baseball. I have no idea of how to reach out to the kids who make it a point to ridicule my son Ryan who has limited verbal communication. His skills are limited but his passion for his teammates is unbelievable. He will start the chants of here we go Collins but he doesn’t know all of the kids names so he makes them and it causes the other kids to tell him to shut up.
    I know the next part will be hard to believe but here goes.
    His team the Blue Jays are not hitting and down by 5 runs in the bottom of the fifth. Ryan decides to start a here we go chant and the other kids have giving up and tell him to stop. He won’t and I ask them to tell him who is batting and he corrects himself and starts to chant here we go Connor her we go Connor triples and you can guess what happens next. Just about the entire team bats and ties the game with only one out and my son comes to the plate with the bases loaded. The opposing coach John taught Ryan how to hit and was substituting for a friend. His teammates say “well he makes the second out and we will still have a chance to win.” I tell them be a good teammate like Ryan and cheer him on they don’t.
    So after two strikes Ryan hits a ball back through the pitches mound the winning run scores and his team and all of the parents go wild. John the opposing coach tells me it is just an awesome moment!
    As a proud father I accept the congratulations from the other parents hug my son who doesn’t care but is glad his team mates are happy. I tell my wife who missed the end of the game. I go to bathroom to cry.
    My son sees a doctor in LA to treat him and he insists we put him with normally developing peers. I have to be honest that I wanted to pull my son out of the league because his team mates very mean to him. I was at my wits end today until this glimmer of hope appeared and made my lifetime. My son treats it as no big deal. But everyone else there felt it was awesome.
    I can’t tell you or anyone else that their child will have a walk out RBI to win a game but I can tell you that their hearts and their compassion for their teammates is limitless.
    I am a proud father who’s sons teaches him everyday accept everyone for who they are. I am humbled again by my son Ryan.

  37. May 3, 2009 11:29 pm

    Curt and Shonda,

    I am a documentary filmmaker in Vancouver, Washington. I have made a 60 minute documentary on Asperger’s Syndrome titled: “On The Spectrum: Coping With Asperger’s & Autism: which shows people on the spectrum succeeding in life. It has received extensive play in the Pacific Northwest and is in many libraries across the US & Canada. It shows both young children and adults on the spectrum and offers hope for parents new to the situation.

    I would like to send you a complimentary copy of the film. You can view trailers on the website: http://www.onthespectrummovie.com

    Please contact me if you would be interested in receiving a copy.

    Thank you,

    Jeff Grinta
    Strawbelly Jerry Films LLC
    http://www.strawbellyjerryfilms.com
    http://www.onthespectrummovie.com
    360-281-1036

  38. DeniseSoxFan permalink
    May 4, 2009 6:59 am

    Awesome, awesome post, Curt. I have a great deal of respect for you and your family. Thanks for sharing.

  39. Andrew Clark permalink
    May 4, 2009 5:26 pm

    Curt and Shonda,

    I was diagnosed with Asperger’s in 1994 (the same year it was recognized by the APA) and can’t thank you and Shonda enough for being so eloquent in describing AS. If it is any encouragement to Grant, one of my areas of specialized interest is sports and as a result, I’m currently in the process of getting a degree in journalism with the intent on being a sportswriter. In other words, after wrestling with what to do with AS, I had to choose a career that Asperger’s could help or complement. My childhood was full of ups and downs, especially while on the school playground, but my parents’ support was invaluable. My respect for you has grown even higher as a result of your willingness to speak out.

    Sincerely,
    Andrew Clark
    Author, From the Reserved Seats Sports Blog
    http://fromthereservedseats.blogspot.com

  40. paul j. ciccolo permalink
    May 4, 2009 6:04 pm

    Dear Curt and Shonda, F.Y.I. The May Center for Children in Randolph Ma. is a national renowned school and research institution. The people there are caring, committed and very knowledgable. ( I have worked here for two years as a job coach, after 33 years in boston public schools Special needs.) they are open to helping in many different ways if you wish. These kids are great, closer to GOD than any of us. Paul

  41. May 4, 2009 6:45 pm

    Hi Curt,

    I live in Lancaster, MA, Perkins School in our town deals with Special needs,
    Autism, Asperger’s, and many other Special Educational classes and housing. It is within walking distance from our house on a beautiful campus, on Main Street. It is a short drive from your office in Maynard.
    I love seeing and reading about the high school graduations they have for the kids…many with such improvements and high achievements.
    It is common to see a student with Dr. Conroy from Perkins in Shaw’s super market, shopping.

    They also have a nice Split Level home for Asperger children and teens, where they are integrated into a normal home life.
    The Director of Perkins School is Dr Charles Conroy. Should you and Shonda ever be interested in visiting our town to see this campus and the great work they do with here, one of the phone numbers is 978-368-6442, at Perkins
    Child & Adolescent Behavioral Health. Dr Conroy’s # is 978-368-1919.

    As for Grant, don’t forget, Jesus still heals, HE hasn’t changed.

    I miss you on the Sox team, and admit some of my excitement for baseball has lessened, now that you are not on the mound. I do have a #38 shirt to wear, now I just need it autographed. (smile)

    We’ll be praying for Grant and your family.

    Blessings,
    Myra Walker

  42. Patty OC permalink
    May 4, 2009 8:24 pm

    Here is a great, funny, and touching animated short about a boy with Asperger’s having question and answer conversation his mother.

    It just won Best in Show at the ASIFA-East Animation Festival. I highly recommend it for anyone. Great mother/child connection story.

  43. May 5, 2009 7:44 pm

    Thanks for sharing your story. My daughter has Down syndrome and I could certainly identify with a lot of the emotions, thoughts, and feelings your wife talked about.

  44. Susan permalink
    May 6, 2009 9:21 pm

    Dear Curt and Shonda, thank you for making your private struggles public because in doing so, you will help so many others. God bless you and your family.

  45. Gini Shevrin permalink
    May 7, 2009 11:47 am

    Dear Curt & Shonda,

    Thank you for sharing your story. I am a Boy Scout leader in Lexington MA, and I wanted to mention to you that many boys with social skills challenges (ADD, ADHD, Aspergers, etc) join scouting and benefit from it. The program is very structured, and the scouts are expected to be accepting of everyone. Something to think about – I don’t know how old your son is. Cub Scouts may be a little intense if your child has sensory issues, but Boy Scouts, at age 11 and above, is structured.

    In the same vein, Curt, I’m wondering if you are receptive to sending out a letter of congratulations to a young man in my troop who is soon to become an Eagle Scout. He’s about a month away from finishing all the requirements. He is an Asperger’s kid, with the addtional challenge of having a life shortening medical condition that flares up in unpredictable ways. We always solicit letters from the sitting U.S. President, various senators, etc, but I am encouraging the families to solicit letters from people in the community who may have more meaning to the individual scout. I don’t know if this particular Eagle-to-be is even a baseball fan, but the fact that you are the well known parent of a kid with similar issues to his would have meaning to him. If you’re interested, you can contact me privately via email. (I am officially the Eagle Coordinator for the Flintlock District of Boston Minuteman Council, if you need credentials!).

    Good luck, enjoy ALL your kids – they grow up too fast. Thanks,

    Gini S.

  46. louise permalink
    May 7, 2009 12:24 pm

    i agree youthcare is great camp my child went there last year. what a change in him. they taught him how to have appropiate conversations. i know scott also. he went to bat for me at a hearing with the dept of education and help me win my case against public school system who felt thier program was good enough. i can feel your pain. we need to look at the brighter side. thanks for sharing and god bless you and your family

  47. Virginia Mansfield permalink
    May 7, 2009 12:27 pm

    Hi Curt/Shonda, thanks for sharing your story. My husband and I were supposed to attend the Youth Care event and now I’m so sorry that we missed it. We had tickets but our son was not feeling well. Anyway, our son attends MGH Youth Care and has thrived as a result of it. He is 11 and has gone for 3 years. I agree, the staff are wonderful as are the directors.

    We appreciate you adding this wonderful program to your causes. As you know things in the spectrum are not covered by insurance and therefore, there are a whole lot of us out here struggling daily to pay our bills, support our families and then make sure that the needs of the “non-typical” children as well as our typical children. In this economy that can be quite difficult.

    It is so wonderful to have a place that our children can go and not be different. They learn skills that help with the rest of their lives.

    God Bless you for sharing. There are so many of us out here, we need a strong voice to lead us.

  48. May 7, 2009 12:38 pm

    Thank you for coming out in public with this. Unfortunatly Aspberger’s Syndrome has a “bad rap” in the general public. A lot of people say that it is just an excuse for children to misbehave or to be anti-social.
    I am going to turn 34 this year, and it was not until last year when I read about Aspberger’s online that I realized how well it fit me- all the struggles that I had as a child, and ones that I still strugle to have as an adult.
    Your son has loving parents and a wonderful support system, and I am glad that he will not have go at this alone like thousands, perhaps millions of other people do- people who have not been or perhaps never will be formally diagnosed with AS and do not know of the support and help that is available to them. I can only pray that they find the help that they need.

  49. May 7, 2009 1:57 pm

    Mr.& Mrs. Schilling, I am a 46 year old quadriplegic hurt as a result of a football accident in 1980. We (my community & myself) have a foundation that raises money for people in need. We have made a significant impact on many lives as well as givin myself an opportunity to succeed in life. We have an annual softball tournament that raises money to help people in unfortunate financial situations caused by sudden illness or accident. We are always looking to help those in need of help. Please let me know if we can help! Also, thank you both for sharing your story as it helps us all realize that we are in this world together and that bad things happen to us all regardless of race, fame or fortune.

    Chance Crawford
    chancecrawford.org
    540-375-3067

  50. Buddy Munson permalink
    May 7, 2009 2:39 pm

    Curt & Shonda,

    My wife & I know exactly what feelings you and your wife went through and continue to struggle with. My son Colton was diagnosed with spectrum autism as well. He is now 8 and it’s a constant struggle for us. We live in a lot smaller city than you and unfortunately, there are not near as many options for help as there are in larger cities like Boston, Chicago, etc.. Colton gets help in elementary school, but I see that when he gets into middle school and beyond the help gets less and less. We’ve thought about enrolling him in a special school with other autistic kids but struggle with the possibilities of hurting him educationally as well as socially. From reading your comments above, your son does show affection towards both of you. We’re lucky, one of the traits in Autism is a lack of emotions and I thank God everyday that my son tells us he loves us and gives us hugs and kisses. One of the few activities my son can participate in is Buddy Ball. It involves other kids with a wide variety of disabilities and it lets him play baseball. The adults get to go out on the field and help them too. Just remember, it’s nothing you and your wife did so don’t feel guilty. God doesn’t give us too much that we can’t handle! Thanks for listening!

    Buddy
    munsonmanor3@verizon.net

  51. Matt Giordano permalink
    May 7, 2009 3:39 pm

    Hey Curt and Shonda. My name is Matt Giordano. I’m a producer on a non profit documentary called For Boston that features non profit organizations and their socially responsible leaders with a link to Massachusetts.

    We’ve held several interviews, including Sean McDonough (Sean McDonough Charitable Foundation), Josh Kraft (CEO Boys and Girls Clubs Boston), Mayor Menino, etc. We also interview Meg Vaillancourt of the Red Sox Foundation; one of the questions I asked her was “What was the most gratifying moment of her career?” Her response was a touching story of when you both visited an orphanage during Christmas. We all know Meg’s done a lot of great things in her career; I thought you might appreciate the fact that that memory is so special to her. Both of you have done so much for our community, I really would love to have you be part of this film. If you’re at all interested send me an email and I’ll tell you all about the film and who’s involved and maybe we can set something up in the near future. Thanks, and keep up the good work!

    Matthew Giordano
    giordano.matthew@gmail.com

  52. ToofarawayfromBoston permalink
    May 7, 2009 5:38 pm

    Curt, I think you might remember me. I was at the 2nd Springing for a Cure dinner and was interviewed by Casey Stern during the evening… I spoke about my grandparents and parents never seeing the Red Sox win a WS… and having my husband run down the stairs to get the bottle of Dom Perignon because I knew the Red Sox were, finally, going to win it…

    Anyway, wow… this topic is near and dear to me. I will be honest and tell you that I couldn’t get past the first sentence before tears filled my eyes. My younger daughter has High Functioning Autism. Some people think she has Asperger’s but her language skills are not as good as most children with Asperger’s.

    Our daughter is now 22 yrs old. When she was 6-7 yrs old she was still babbling and had great difficulty comprehending what we said to her. Now, all these years later, she is graduating with her GED on May 28th and will begin Junior College on June 8th.

    Like Grant, her social skills are a problem. I am sure if we were to sit down and share – we would be rolling in laughter. It does take some time to get to that point, though. Believe me… 😉 Unfortunately, for H programs like Youth Care did not exist when our daughter was young. I am so very happy for you that you found something so wonderful for Grant.

    If you would like to email me, please feel free to do so. Chaiah (ToofarawayfromBoston)

  53. John Vella permalink
    May 7, 2009 7:33 pm

    Dear Curt,

    I was listening to WEEI replay on Saturday while I was working, and I heard you talking about your son having AS. My 1st born J.T. was diagnosed with ASD at the age of 15 months. I have to tell you when I first was told by the doctors, I was filled with emotion and anger. I did not know anything about ASD, and I kept asking myself why and how did this happen? As I listen to you more on Saturday I heard some of the story about the boy on your baseball team that none of the coaches wanted to deal with. I heard you talk about how people would look at your son in the same way and how cruel people can be. I have dealt with those types of people in the supermarket, playground, and even in my own church. It’s a sad situation for many families because people who are not affected by this just don’t understand. As I listened to you talk about how your son was a gifted, outgoing and loving kid, I started to think of my situation with my son. J.T sounds a lot like your son, he always wants to make sure people are ok and always has a smile on his face. The littlest things amuse him and he is just a true gift from God. It took me a few months to get over my anger and when I did, I decided that as long as he is happy that is all I care about. What people say and think about him no longer affect me, I just smile at those people and say ” my son has ASD and if you don’t know what that is let me tell you about it”. J.T is now 4 and is making leaps and bounds with school and his ABA home services. The doctors can not make a prediction now but they think he will have high functioning AS. After listening to you talk about your son, I thought and thought about sending you an email. I guess what I really want to pass along to you is when people stare, make faces or remarks about your son, always think about him and how much joy he brings to your life and how happy he is. Think of all those wonderful things you said about him and the anger will turn into a smile. It works for me! I’m sure you have many people say this, but if my wife and I can help with anything please let us know. Best of luck with your son and know that you and your family are in our prayers.

    John Vella

  54. Melanie permalink
    May 7, 2009 8:46 pm

    Please get the word out about this disorder.
    I feel that many people are too quickly to label these children with drug theropy for ADHD or for other things. My best friend in the whole world Kelli has been actively working for the Autism community in RI for the last 8 years. She also has such a theroputic way of getting through to these children. As you may know As you must know as parents Asbergers is considered scientifically as the highest functioning form of Autism. However those of us that contribute or pay attention to the cause, we know this might necessarily be the case. The URI baseball program is taking this fight to a whole new level, Their Coast Jimmy Foster has a dasughter on the Spectrum. Beautiful Deleany is their girl. Get together with him and my best friend Kelli who is thier cousin and bring this issue more public. I am 30 and have a wonderful 9 year old second baseman in perfect health…..but I want more children and I am terrified at the statistics. Talk, Rally Get behind it. Find methods of treatment and preventative measures. God Bless

    Also Judy Pratt in Wrwk RI does A LOT to raise funds and awareness for ALSshe had a dear friend who lost his battle.

    I may not agree with your politics but I agree with your heart and compasion for the good condition of Human Life

    Best Regards and weell Wishes to you and your Brood

    Melanie12sox

  55. Gregory permalink
    May 8, 2009 2:38 am

    I realize the information and research can be overwhelming – and of course the emotions as well. I know I probably sound like just another well-meaning, fan offering possibly useless and unsolicited advice, but please check out the linkages between gluten and casein-free diets in people with aspergers and autism. The correlations are nothing short of stunning; most M.D.s don’t want to admit a completely free “treatment” like a change in diet to remove these harmful (at least to your son) substances can do more than all of their pills and treatments. It is free to try and absolutely harmless.
    God bless you and I will pray for wisdom and hope for you both.

  56. Donna permalink
    May 8, 2009 6:09 am

    Curt,
    I read this latest blog posting and also heard what you said on the radio last week. In addition to being very moved,deeply touched,three thoughts came to mind regarding both you and your son. My immediate reaction upon hearing your news is that you are an incredibly human being. In the past I have written to you about everything you have done for people with ALS and how you have made a difference in their lives(I mentioned a friend who was suffering with ALS,who has since died,and you response was greatly appreciated). It is only now that you mention that at the same time you were giving so much of yourself to help others,you were also dealing privately with your own situation and that of your son’s. It is very rare to find a human being who will put so much of themselves into easing someone else’s physical and emotional pain while going through their own situation-and you are such a person. Seriously,you are a beautiful human being,most,if not all,pale in comparison to you,and to be honest,I feel guilty to have “dumped” on you in the past when you have had so much of your own to contend with. I do give you much credit for coming public with it,which will not only benefit you and your family but others in similar situations as well..The second thought,that actually ties into the first,is what you said about your son being such a caring,loving person,and totally accepting of the fact that his friends have physical conditions. I was very moved by that,it is fantastic that he feels that way,very special,but my other reaction is that he gets that from you. Like father,like son. We all have things that are instilled in us from our parents(at 49,I see things in me that are so like my mother)and being caring,loving,accepting of others,he absolutely gets from you. Words cannot begin to express how sorry I was to hear your son has AS,but he is incredibly lucky to have a father,parents,as he does. Yes,there are challenges,but he is going to continue to thrive,to grow,and have great characteristics,like his father. We get a great deal from our parents and he will certainly gain a tremendous amount from you…Finally I cannot begin to tell you how physically ill and emotionally outraged I was when I heard what you said about what happened with the adults at Little League,with the little boy they did not want to play. I totally agree that it should be about the kids,not the adults,but it goes way beyond that. This was a matter of adults not being accepting of someone who is “different”,physically and/or emotionally challenged,and that disgusts me. Please NOte that I say physically/emotionally challenged,which is what I consider people,like myself to be,(although I am only mildly physically challenged),NOT handicapped. I hate the word handicapped. We all have something that may not be the same as everyone else,and not only only should we be accepting of that,but we should realize that in the end,inside we are all the same. It reminded me of a great song that addresses this very issue,titled Don’t Laugh At Me,which really puts it into perspective. I have printed the words to the short song below for you and everyone else to see-it will not make a difference in terms of those horrendous,unfeeling,uncaring adults that you mentioned but I want to share it,nonetheless. As for your thinking that people will feel this way towards your son,they will NOT. he people you mentioned are the few,not the many,and most will see your son as the wonderful person that he is,will always be. I certainly do(and so do the people who have posted before me on this blog). My thoughts and good wishes are with you and your family. I wish that I could do more(I obviously cannot do for your local organizations when I am here in New York City,although if you are ever here in New York City,my time is your time)but I would gladly welcome you here in NYC anytime,and your message has been heard here in New York City. If ever I can do anything for you,I am here for you,always. In the meantime,my love and support are with you,and that will never change. Please do read the words to the short song below,words that I would love to plaster on the homes of the people you mentioned(and thank you for putting the little boy on your team). Thank you again for everything.
    Donna,New York City.

    DON’T LAUGH AT ME

    I’m a little boy with glasses
    The one they call a geek
    A little girl who never smiles
    ‘Cause I have braces on my teeth
    And I know how it feels to cry myself to sleep
    I’m that kid on every playground
    Who’s always chosen last
    A single teenage mother
    Tryin’ to overcome my past
    You don’t have to be my friend
    But is it too much to ask

    Don’t laugh at me
    Don’t call me names
    Don’t get your pleasure from my pain
    In God’s eyes we’re all the same
    Someday we’ll all have perfect wings
    Don’t laugh at me

    I’m the beggar on the corner
    You’ve passed me on the street
    And I wouldn’t be out here beggin’
    If I had enough to eat
    And don’t think I don’t notice
    That our eyes never meet

    Don’t laugh at me
    Don’t call me names
    Don’t get your pleasure from my pain
    In God’s eyes we’re all the same
    Someday we’ll all have perfect wings
    Don’t laugh at me

    I’m fat,I’m thin,I’m short,I’m tall
    I’m deaf,I’m blind,hey aren’t we all

    Don’t laugh at me
    Don’t call me names
    Don’t get your pleasure from my pain
    In God’s eyes we’re all the same
    Someday we’ll all have perfect wings
    Don’t laugh at me.

  57. Doctor X permalink
    May 8, 2009 7:55 am

    Best wishes to you and your family.

    –J.D.

  58. Lee S. in TX. permalink
    May 8, 2009 1:42 pm

    Curt & Shonda,
    I start by saying that I don’t read your blog as often as I should. Curt, as a lifelong Red Sox fan, you have been a joy to watch for me and my family. You have helped provide some very happy moments for us all, and those in Red Sox Nation too. I don’t always agree with your views, though, I usually do. I just wish the media would leave you alone sometimes. Are they just jealous of you? That can be debated at some other time! I was not aware of the diagnosis of your son. I have a genetic disease myself. One I inherited from my mother. I am handicapped myself and though I don’t have Asperger’s, I know the kind of difficulties you have to deal with on a daily basis. I send this primarily to Shonda, though it is for you both. May God bless you and your family. I say to Shonda, as I know the love and bond a mother has for her children. You are a very remarkable lady. The work you do with SHADE and the work Curt does with ALS is amazing and something we can all learn from. And to think, you do all that and more! Curt, it is sometimes forgotten that you have “another” life away from the public eye. I’m sorry I didn’t think about that. I’m sure that many other people oversee that fact as well. I am guilty of just seeing you as a role model. Something I know you don’t like. An ex-ball player that lives in his own world away from us “normal” folks. That “normal” things could never affect a family like yours. Once again, I’m sorry. I wish you all the luck in the world, and I hope there is a cure out there for your son. Though I have not given up hope, there is no cure or treatment for what I have. Maybe there is for you. I will pray for you, your family and your situation.

  59. May 8, 2009 2:09 pm

    Curt,

    My wife has started something you or your wife might be interested in getting involved in regarding children with Autism. We are currently working with the Commandant of the Marine Corps’ wife on development and could use some more help.

    Feel free to have your wife email me and I’ll put you in touch with her directly.

    Using your voice to shed light on this tough issue is truly admirable.

    V/R,

    Sean

    Sean Gilfillan
    CEO
    To The Fallen Records
    http://www.ToTheFallenRecords.com

  60. Ben permalink
    May 8, 2009 6:09 pm

    Hi Curt and Shonda,

    My brother has Asperger’s syndrome, so this really hits home for me. He’s now 36, and I’m 32. Would you believe that he is a college graduate, married, and living abroad?! The biggest mistake my family ever made was assuming that he wouldn’t be able to accomplish certain things, because he’s shattered those expectations numerous times. I’m not going to tell you that everything is going to be perfect, because I’ve dealt with numerous examples of him just not being able to understand certain concepts, and countless social examples where he just wasn’t able to something as simple as strike up a conversation with someone. On the one hand, he was excluded from many social groups and had difficulty doing some tasks, but over the years he has also learned to make it on his own and find his own friends. The biggest thing you can do for Grant is encourage him. Never make him feel like there is anything that he can’t do, but definitely be prepared to be there for him for when he gets frustrated, because it will happen. By the way, I can relate to your comment about being brilliant. My brother has an almost photographic memory when it comes to maps and directions. He’s a great guy, and if Grant is anything like he is, you will have many joyful moments. This will be a big test for your family, but it sounds like Grant has phenomenal support. May God bless your family.

  61. janice Anderson permalink
    May 8, 2009 9:03 pm

    Curt and Shonda thank you for sharing your story with everyone. I have a daughter 24 with Down Syndrome and can relate to what you have gone through these past years. Nothing is easy, school, work, friends, etc. My daughter is doing wonderful now. When she was 3 I became involved in an agency here in Mass receiving respite care. From there I became employed in the agency and it has really helped me advocate for my daughters needs and also for many other families. Unfortunetly I may be loosing my job and may daughter may be loosing her services because of budget cuts the Gov. has proposed. Our families are now facing a new obstical. It is very frustrating that the governor feels he can cut the most vulnerable individuals who have no voice. We are doing what we can at this time but it seems to be a never ending battle. I hope that the camp your son has loved is not to be effected by the cuts. My best wishes for you and your family as you go through the new world of Special Needs. I know your son will be happy as he has very supportive and loving parents to be there for him. Again thank you for sharing your story and helping others through the process.

  62. Jody Kipnis permalink
    May 9, 2009 1:21 pm

    My 9 year old son has been diagnosed with AS 4 days ago. I read your story and couldn’t believe the similarities of both your son and my feeling while on my own journey to find this diagnosis. As I read the story allowed to myself, my son shouted out from across the table “Hey, that sounds like me. I don’t have any friends who talk to me and I play alone in the playground.” It was great to have that opportunity to start to introduce to him what is going on. I want to thank you for putting your story out there. I am at the beginning of my journey to help my son Ross but I finally have started to find the resources that I need and hopefully it will help him to be successful on his own life journey.

  63. Marybeth & Ed permalink
    May 11, 2009 8:16 am

    This story has really touched us as we have been in these shoes and our family sees living with our son as a JOURNEY!

    When our son Robbie was three, we knew he was special….but we didn’t know why. He was able to do simple division in his head and could read well before his peers. At the same time, he grew frustrated easily, hated changes in routine and had difficulty understanding common social norms. After almost 4 years of testing, a variety of mis-diagnoses and failed treatments, he was finally diagnosed with Asperger’s Syndrome which is on the Autism Spectrum.

    Now having something to call it, we began our journey to understand and address Robbie’s challenges head on. As they say, it takes a village to raise a child and we have been blessed with so many around us that have helped. As with everyone affected with ASD, this has been an individual journey without the benefit of MapQuest or GPS.

    Robbie is now 16 and is doing quite well. He has been able to leverage his strength of logic and reason to help him overcome his disconnect with emotions. He has learned a number of adaptive behaviors and the importance of being his own advocate. He has a passion for kickboxing, chess and anything having to do with computers….especially video games where he can get lost in a reality he can create for himself. He wants to turn that passion for computers into a career in computer science.

    Living with Robbie has provided all of us fascinating perspectives on daily life situations. We have come to learn a new way to view the world through Robbie’s eyes and often comically literal interpretation. Robbie has enriched our parenting experience and we feel blessed to be part of “Robbie’s Journey”.

    Thank you for sharing!

  64. May 17, 2009 9:29 pm

    It’s a big deal, discovering Asperger’s in yourself or a child. It sure was for me. Have you read my book Look Me in the Eye about growing up with Asperger’s? You may find it inspiring as I ended up okay. Feel free to write me at the email shown if you’d like to talk further.

    Best wishes
    John Elder Robison

  65. Kevin permalink
    May 20, 2009 4:28 pm

    Curt,

    Thanks to your generosity, Youthcare was able to accomodate several more children into the Camp for this coming summer. As a result our son, Peter, was accepted and we are looking forward to a wonderful summer.

    Thank You,
    Kevin

  66. Ron permalink
    May 20, 2009 9:29 pm

    Thank you for allowing this discussion on your blog. My 15 year old son, soon to be 16, has been diagnosed with mild Asperger’s. Reading about the near-by places that might help such as the school in Randolph gives me some direction that might help him. Boy Scouts can be helpful, but in my community the leaders seemed to be a little elitist. I recall a “special group” in Quincy that took my older son in (he is also special needs and is now 32) after he didn’t fit with the my home community troops. I suspect that there is a critical group of people here in the southwest part of Boston (Norwood/ Westwood/ Dedham/ Medford/ Medway /Norfolk) that could form a support group. The problem is each of the kid is in a different world – they do not socialize together well. I pose this question to everyone, especially someone knowledgeable in group dynamics, is there something that can be done to help these kids “fit in”? I have tried a few group things way in the past…just didn’t work…and this is part of the frustration with Kids who have Asperger’s.

  67. Dylan Guadalupe permalink
    May 20, 2009 11:04 pm

    Gosh Curt I’m sorry. I have it too, so I hear ya. It’s going to be tough, but it CAN be dealt with. I am an example of that. I am fully functioning, largely because my parents worked with me. I don’t know if they suggested Ritalin, but it did work for me. Just a thought. Aspergers is tough, but it can be beaten.

  68. Joe Morley permalink
    May 21, 2009 9:50 am

    My 13 y/o son was diagnosed with AS at nine. He is a great student but now that he is in 7th grade things are getting tough. He is bullied and teased. Despite getting all A’s and B’s he is repeatedly called “ret*rd”. On an overnight field trip none of the other boys wanted to pair up with him for a roommate. I’m hoping that he doesn’t end up dropping out of school down the road.
    I’m not venting, but if anyone has any advice I’s surely appreciate it.

    Thanks.

  69. Kathy permalink
    May 22, 2009 11:40 am

    Thank you for sharing. I think it’s so important for people to be open about this diagnosis. My son was diagnosed at 5 and I can say, when I was given the *label* it didn’t devastate me because he was the same wonderful kid that walked in that office that walked out holding my hand. He didn’t have cancer, he wasn’t going to die. He was just going to have a more difficult time than the average kid. There are many gifts that come with Aspergers. My son is amazing in so many ways – it breaks my heart to see him struggle, to see kids look at him like there’s something wrong with him when he’s having a hard time. My son is also 9. I would cry and still do (especially reading your post!) when things go wrong for him. My heart aches when he gets confused, overwhelmed and isn’t fitting in. I try to balance out my emotions with this diagnosis by working diligently helping him cope, learn skills and remembering the very many gifts he has. Every year brings new challenges and I fear middle school but try to do whatever I can now to help prepare him for the world that he doesn’t fit meticulously in to. Remember some of the greatest inventors, scientists, entreprenuers have/had Aspergers. I know my son will do great things … thankfully we know a hell of alot more about this disorder so we can help our kids with the frustration, anxiety, isolation they may feel … Look Me in The Eye is a great book! Thanks John Elder Robinson!

    Kathy

  70. Eric S. permalink
    May 22, 2009 1:49 pm

    Curt and Shonda,

    God bless you both for all your efforts on behalf of so many. Relative to your son Grant, he is no doubt lucky to have the two of you for parents.

    My wife and I have two sons, our oldest age 9 who was diagnosed with ASD at age 5, and a younger son, age 7, who is neurotypical. Skipping for the time being, what we are convinced is the cause of his ASD, we originally relied on mainstream medicine to lead us in the right direction dealing with our son’s diagnosis. We went to the best doctors in Boston on the subject, and explored a variety of therapies recommended by them. He did not benefit from a single mainstream treatment that was suggested.

    It was not until my wife discovered the Autism Research Institute, and Defeat Autism Now that our son bagan to come out of his fog. Defeat Autism Now is an organization dedicated to the exploration, evaluation, and dissemination of scientifically documented biomedical interventions for individuals within the autism spectrum, through the collaborative efforts of clinicians, researchers, and parents.

    Thank God, through a variety of organic supplements, bio-medical interventions, and cleansing protocols that mainstream medicine refuses to recognize as viable treatment alternatives, our son began to look us in the eyes when interacting with us, he now socializes with his peers, and he has become a very funny, engaging, intelligent, and high functioning child, testing grades above his peers in school. He loves designing computer games, by the way…:-). With all that being said, he still has ongoing sensory issues, executive functioning, emotional balance issues, that we work with him on a daily basis. I can’t say enough about bio-medical treatments, for children of all ages, as well as adults I’m told.

    As for the cause of his ASD to begin with, rather than upsetting myself and perhaps others reading this blog, (believers and disbelievers), I prefer to refer you to http://www.generationrescue.com for some valuable insight on the subject.

    Thanks for all you do!

  71. sheryl pellerin permalink
    May 22, 2009 5:57 pm

    It is people of your stature that needs to come out and speak about this issue. They don’t listen to the regular Joe Smoe…..There needs to be more awareness of Autism. Thanks for stepping forward it is a big grasp to understand. You and I are fortunate we are able to keep our kids at home, there are families who do not have that choice. Our son could of been put in a facility for autistic individuals but we choose to keep him home and fight this disability.He is 18 1/2 and doing well. But, it is a parents life long commitment and it take alot out of us. So, support is what we need for this disability and to find out why this is happening.Take care and support the cause, “Autism Speaks”.

  72. Patrick Brennan permalink
    May 27, 2009 2:28 pm

    Dear Curt and Shonda…

    God Bless you. I know you will see this challenge in the same way Saint Paul saw his. My Grandson Braxton is also an Aspergers’ child. He is 20 this year and in his first year of Community College in Orlando, FL. There were many years of frustration and fear before we finally learned that his problem was not a derangement, but a manageable medical condition that could be addressed with medication, training, patience and love, love, love.

    In the many years since his diagnosis I have come to recognize his symptoms to lesser and greater degrees in men and women of all ages who have not had the benefit of superlative treatment. They are the ones who suffer the most.

    We will keep you all in our prayers.

    Pat Brennan

  73. Belle permalink
    May 29, 2009 8:31 pm

    Curt and Shonda,
    My thoughts are with you and your family.
    I work with a 14 year-old with Asperger’s who, a few years ago, was what most would consider to be an extremely “difficult” child. He has made leaps and bounds with his social skills and is now a joy to be around. He does continue to learn how to react to what he deems as “unfair” situations by practicing to become more flexible and patient. To me, he is a success story and I believe he has a great future ahead.
    I don’t know where on the Asperger’s spectrum your son is, and I’m sure you’ve received tons of advice, but I’d like to recommend a book I’ve found helpful: The Explosive Child by Ross W. Greene, Ph.D.
    God Bless.

  74. Anne permalink
    June 2, 2009 7:51 pm

    Curt and Shonda:

    Listening to Curt’s discussion on sports radio describing the transition in town with dealing with a child with Asperger’s syndrome was heart warming, as well as heart wrenching. My husband and I coach a baseball team in Norwood for “Challenger Children” as part of the Norwood Little League, and it is nothing short of rewarding. All of the children have various degrees of Autism, Down’s Syndrome and Asperger’s Syndrome, and I have had the pleasure of watching so many of them excel in an environment where they are accepted for their abilities and are never looked upon as “different”. Don’t know if this is something that your son Grant would find as a fit, but thought it might be something for you to consider.

    May your journey be as rewarding and fullfilling for both of you, as well as Grant, as ours have been working with children like Grant.

  75. Corey Smith permalink
    June 2, 2009 9:18 pm

    Mr. Shilling,

    I am moved by your comments about Grant. My daughter has cerebral palsy and is thus challenged in every way. My wife and I had accepted that our role as parents would likely entail a lifetime of care for her. However, Cadence has recently been accepted to participate in a cord blood reinfusion program at Duke University. As you might know, cord blood has a myriad of stem cells and stem cells have unparalleled regenerative properties. The cost of the treatment is not covered by insurance. We are thus having some community fundraising events to cover the costs. We would love to have your support. If this interests you, please visit the following site: http://www.cadyscause.blogspot.com

    Good luck with your son and thank you for your time.

    Corey Smith

  76. Jerlaine Leclerc permalink
    June 13, 2009 12:41 pm

    Curt..thank you so much for sharing your sons plight with Asbergers disease. We have a granddaughter, now 15 with Asbergers. She was diagnosed at the age of 7. My son (her Dad) and her Mom knew there was something wrong with Ashley but no doctor could pinpoint her problems. Luckily they found some doctors here in Maine at Maine Medical Center that diagnosed Ashley with the disease. She immeditely got help. Ash also has ADHD but that is controlled with meds to some degree. She is entering High School this Fall. She has come a long way and we are so very proud of her. Don’t get discouraged Curt with Grant. I know that is easy for me to say to you but Grant will gain and prosper. I am sure he has the best doctors. When Ashley visits us, ironically we see little or no symptoms of the disease. I believe she finds her grandparents a haven and she seems to be peaceful with us. The things I am told to watch for, we never see. She is a vibrant beautiful young lady..I know she has some problems with learning but the school system she is in has been fantastic and her special needs have been met. We love her so much and she is such a delight. Keep up your good work with ALS. You and Shonda are such wonderful caring people and I loved to watch you pitch. We are avid Red Sox fans. We miss seeing you. Keep your faith in God Curt and He will help you take care of Grant and guide you with his care. You are awesome. I wish I could get into a chat with you…I hope you get a chance to read this message. Take care. Love ya, Jerlaine Leclerc, Maine.

  77. Steve J permalink
    July 1, 2009 9:30 pm

    To the shilling family,

    I stumbled upon this blog looking for your experinces with a “slap tear”.
    hopefully I’ll find that in another blog….
    Our son also has very high functioning aspergers with identical traits to your son. We’ve spent an enormous amount of time with maintaining his focus and teaching him his social skills that typically come easily with children without this condition.
    Given both you and your wife’s exposure to the community please share with others this key item: Many parents with kids that do not have aspergers (or other condition) just don’t understand the inappropriate behaviors of kids that have this. It can be very wearing on many families. I am sure you understand what I mean.
    For me I inject him into as many social settings as he can handle (or me for that matter). Baseball is one of those settings. He’s learned so much both mentally and physically and is progressing nicely (loves it too).

    Thanks for sharing this with the community. Truely commendable!

    S.J.

  78. Pgh_Pirates_Fan permalink
    July 9, 2009 7:13 pm

    Mr. Schilling,

    I happen to have a diagnosis of AS myself. I have always done well academically and have always been advanced in that respect (I was doing multiplication at age five and could read adult level books by kindergarten) but have had two major “problems” as a result of the disorder–social skills and anxiety.

    I have found social skills to take some time and effort to develop. I tended to ignore the other children altogether when I was young (part of that may be due to my situation as an only child) and my obsessions about “strange” interests didn’t exactly help that. I knew everything possible about traffic lights, elevators, certain brands of computers, and local roadways. I knew next to nothing about Ninja Turtles, Spiderman, Batman, and the other “typical” interests that everyone talked about. Thankfully I found a few friends who shared my interest in computers and was able to learn some cues from them. However, it still kept me a bit behind my peers.

    Eventually I got into baseball. I was always interested in numbers and actually got into baseball after reading the newspaper and discovering baseball statistics (ERAs, batting averages, etc). Since I obviously wanted to know how those statistics were calculated I began to watch baseball all the time and signed up for little league. The “common interest” on the team was a good thing, as it helped me to be able to talk to people about an interest at an appropriate time.

    Baseball wound up being my saving grace. It gave me a chance to learn some social skills, gave me an interest that wasn’t “unusual”, and became my anti-stressor when I reached my teen years. Social anxiety became a major problem by my teen years (especially when everyone I knew got into cliques, dating, and whatnot) and I found solace in baseball, whether I was playing the game, reading about it in the newspaper, watching it on TV, going to a Pirates game, or even simulating it on my Nintendo. Whatsmore, I found that my baseball team began to accept me for who I was because of my knowledge of the game and the skills I brought to the table (I was a shortstop and leadoff man). I was usually the quiet one in the dugout unless I was called upon but this gave me a good chance to “soak up” the socialization cues from everyone.

    By the time I had graduated high school I had several close friends, including many who didn’t play baseball. I am far from being the best socializer in the world but I have definitely improved during my college years. Being around others helped me and I think the best thing for your son is to find an activity that he enjoys and can get away with “being himself” in. Additionally, it may be beneficial just to watch social interactions to see what works and what doesn’t. Take him to a playground or mall, for example, to observe what is going on. This worked for me and while your mileage may vary I’m willing to bet it would be a positive thing for your son.

    I currently am not playing baseball (I am working on three college degrees right now and simply don’t have the time for proper conditioning, practices, traveling to away games, etc) but the game continues to be my favorite relaxer. Anxiety has not gone away in me but a good game on TV will always relax me, even if my beloved Buccos are being defeated.

    On a final note, I should mention that social skills classes are now widely available. These were not even on the table when I was younger so I don’t know how well they work. I do know someone who taught one last summer and he said that they worked on everyday interactions, which definitely sounds good on paper, but I feel that these situations need to be observed and practiced in context as well. It’s like learning how to throw a slider–teaching it in isolation in a bullpen session may be beneficial but to actually test its effectiveness it needs to be thrown against live hitting and it certainly helps to see others throw the pitch to see what they are doing right or wrong.

    I wish you the best of luck with your son and thank you for sharing this post. It’s always good to form an awareness of AS, as many people are still unaware of it.

  79. David Noonan permalink
    August 25, 2009 3:45 pm

    Hi Mr Schilling,
    I am writing to you on this blog, I guess to ask for help. I too have a son with Aspergers syndrome. He just turned 10 in July. When I read the above speech that Shonda gave it really touched a nerve for me. I will never forget the day my son was diagnosed. A lot of the way she describes her feelings really hit the nail on the head with the way I felt. I remember my wife crying that entire day. As we both know life can throw somethings at you you that are tougher to handle than your splitter on your best day. This past January my wife was killed in a car accident. I now parent my son Joshua alone. Despite that we are making it OK and have found a lot of caring people around us. Now we would like to give a little back. I am throwing a small benefit rock concert (my wife was a musician) with the intention of donating the proceeds in her name to any cause related to helping people with Aspergers. Now I am not a marketing guy, or a guy that knows how to do something like this. I am just a guy with some musician friends, that are willing to play, that has found a club willing to let us do it. We have scheduled it for October 30th of this year at a small club in Dracut , MA. If there is anyway you can help me, even if it is just with ideas for how I could get my event to make some money I would really appreciate it. It would mean so much to get help from someone like yourself, especially on a personal level since my wife was a really big fan.

    Thank you for anything you can do, and God bless.

    David Noonan

  80. Cait bloes permalink
    September 3, 2009 7:33 pm

    I am writing this because my kid needs help. Thank you so much for sharing your families story. My 18 yr old son was found “soft signs” of AS until he crashed with an emotional disability causing him to miss 2 years of high school. We’ve walk him through until this fall where he is testing the “college experience. As you know the deep fascination/love the an AS person develops. This kid it is baseball. It’s his soul and he practices until he is blue in the face. But, kids on the spectrum are not known for their prowess with ball sports. To your knowledge is there any programs for AS kids/teens that allows them to play and be themselves? Thank you kindly.
    Caitilin

  81. Anne Frazer permalink
    September 4, 2009 7:08 am

    I just spent some time cruising through the comments left on this post. Seems as though no one has addressed your feelings and those of your wife.

    The diagnosis of Asperger is a turning point in your lives but not really life changing or a reason for a compassionate outpouring of emotion (although it does feel like a group hug).

    Rather it is an opportunity to embrace the differences in how your son (and mine) perceive the world on an ongoing basis. Every interaction he has in a social context, every feeling he has or doesn’t have, every part of his day – it’s all ‘different’ from his siblings and classmates.

    Parents have to feel the sting every day also; the looks and stares, the comparisons and competition with other kids. So many people have no understanding of the disorder and it’s critical for parents and caregivers to put aside our own feelings constantly for the good of our children.

    You almost have a higher burden as ‘celebrities’going public because your inboxes must be filled with well-meaning advice and sympathy notes. You both seem strong and focused on your own lives and the lives of your children and I admire you for that. Not being a celebrity allowed me the time and privacy to grieve, feel sorry for myself, get angry, feel numb and move on to where I am now; accepting of the reality and loving my son for who he is, not who he will not be.

    I’m happy to have met you on cyberspace and your son is very fortunate to have supportive parents. I just keep in mind that there are many neurotypical sons and daughters who face their own challenges and my son having Asperger, to me, is the same as if he had diabetes or asthma, just another health issue to manage.

    Take care,

    Anne Frazer

  82. Ryan permalink
    September 17, 2009 4:11 pm

    Dear Mr. Schilling

    Iam an 18 yr old with AS who also has a profound love for baseball…and although i could spend this part of my time hating the differences we share i think it would be better to see what can/will bring us together…..i just want to thank you. thank you for doing this..hopefully this will set clear and show everybody who you really are and settle down the critics that say no to you. but most of all i hope this shows and gets rid of all the stigma that can come along with AS. So i will have to ask if you could become even more of a spokesperson against stigmas that will come in this situation that your son is in. There needs to be people who can understand what its like….and what we can change about ourselves and as well as others. I also have to say that this “fight” (if you will) can and will end in a good way. i personally believe that if we make people more aware of this then it can only end where we accept the truth and the fact that it is NO BIG DEAL. (i had a friend tell me this and said that although acceptance may seem very hard it is in fact very easy. as long as you have the ability to believe in yourself.) and actually i hope you tell your son that. If you have any questions about what ive said or you want to share what its like with me then feel free to do so…my email is posted along with this. I wish your family the best as you continue on this journey to help your son. and again if you need any help or if you want to ask a person who has experienced this first hand then it would be an honor to hear from you.

    thank you,

    Ryan

  83. Michael M. Reilly permalink
    November 5, 2009 7:39 am

    Mr. & Mrs. Schilling,
    Thanks you for sharing Grant’s experience with AS. Our son Christy was diagnosed with asperger’s about 3 years ago, he’s now in 4th grade, and although he is a happy, smart and beautiful child, the social difficulties he has had in school (teasing, bullying & generally feeling somewhat of an outcast)can be heartbreaking for him and for us as parents. I heard from a friend who was at an AS fundraiser that you were big supporters – I had no idea – God bless you both and please keep us posted on anything regarding Grant that you think may be helpful to the rest of us. thanks again,

    MMR

  84. gouldiesox permalink
    March 14, 2010 3:13 pm

    Dear Curt, Shonda, and the entire Schilling family,

    My name is Rebecca and I am a 24 year old girl, from Massachusetts who has Asperger’s Syndrome. I was wondering if you’d like to hear the things I have accomplished despite having this disability. I would love to hear about Grant and his achievements. I can also give you some insight into the world of a female with AS and the challenges I have overcome.

    Let me know if you are interested. I would love to hear from you.

    Thank you,

    Rebecca G

  85. drew1014 permalink
    March 17, 2010 4:04 pm

    Hopefully you’ve since been in touch with LADDERS in Needham (Margaret Buaman) – a great resource.

    My ex-wife is also head of ASCONN here in CT & is one of the best in the whole network (you’ll hopefully meet her at book signing).

    In sports world, Dan Marino, Doug Flutie & Artie Kempner are good contacts as well.

    My son Nate is high honors & on the swim team in HS.

    Main interests are girls & Red Sox (in that order) – hopefully you’ll meet him too.

    DC

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