Hi everyone! I know I haven't written in a very, very long time. It has been an extremely rough summer. Thankfully after a really hard month of July, August seems to be going a bit smoother. I've been home with Nathan 100% of the time now that we are both done with our summer school programs. Since I've been home I've been able to catch up on so much of the reading I'd left behind in my email inbox. I'm subscribed to the Autism Speaks YouTube channel and one of my favorite series is Kerry's Korner. I posted one of Kerry's videos this past July (in response to the whole 50 Cent debacle). Well, I decided to go back and see some more of Kerry's Korner and stumbled upon a video of him reading a poem he wrote about his experience as a person with autism. I was SO touched when he spoke of his parents and hearing his words was like he was saying what Nathan has been trying to tell us for years. I almost felt transported into the future imagining Nathan saying these words about us, his parents. I HAD to find a way to contact Kerry!!! So I spent almost a whole day trying to find him... and I did, so I emailed him. And, guess what? HE WROTE BACK!!!
This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.
On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.
What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.
My Mom Wrote to The Woman:
“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard. Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”. Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school. The Kerry you see today is not the Kerry I grew up with. As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT. One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot. Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season. All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”
To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.
My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.
After hearing his mother's description, it is hard to believe, but here is Kerry today:
The more I read and learn about Kerry, the more star-struck I've become to know that I am now "pen pals" with one of the most amazing autism successes I've witnessed in my life. In my search I have learned that he not only has an undergraduate degree, but he is soon to finish his master's degree as well. He is employed by Autism Speaks and hopes to one day become a motivational speaker. He also worked as a screen-write for the movie Joyful Noise!!! Did I say I was star struck???
So, Kerry has now ignited a deeper passion in me: to continue to push for Nathan to be seen for his strengths, not his weaknesses. To continue to support each and every individual with autism with Kerry's success as my driving force. Reading his story, it is almost impossible for me to believe where he is and what he's accomplished. I hope you, too, will find Kerry's story an inspiration in your life!
A friend shared this on Facebook and I wanted to share it with you. It's in spanish, so I will post the original first, then the english translation will follow. Thank you to Katya Perez Lopez and Surjeily Lebron for sharing their pain. We are all on this journey together and we all understand... but don't tell us you "understand" if you're not walking this walk, because there is NO way you can!
"Dale Gracias a Dios que tu nene tiene Autismo al menos el Autismo no duele"
Muy temprano para escuchar estupideses de la gente.
Quien te dijo q el autismo no duele??????
Claro que duele, duele cuando estas una hora tratando de decifrar que le pasa y te das cuenta q solo tiene sed.
Duele cuando tiene fiebre y dolor en alguna parte que no sabe decirte donde es.
Duele cuando viene Santa Clouse y los Reyes y ves a todos jugando con sus juguetes y a el con las cajas (teniendo 9 años)
Duele cuando el se siente mal y los doctores me dicen no pasa nada esta bien, luego de dias y horas vota una piedra cuando hace pipi.
Duele cuando esta triste y no hay manera q sepas porque.
Duele cuando llega furioso de la escuela y tu no sabes q paso.
Duele cuando juega en el parque y ves a los papas alejando a sus niños de el.
Duele cuando estas en walmart y un imbecil le dice a su hija ven despegate de ese nene
Duele cuando ningun doctor sabe que tiene hasta que lo ven vomitando sangre
Duelen las miradas raras
Duelen las rabietas que hace tipo "terribles 2" teniendo casi 10 años
Duele el rechazo de su propia "familia"
Duele que en su cumpleaño los unicos invitados son sus primitos y su hermano
Duele que tenga hambre y tu no entiendas que le pasa
Duele no saber si el sabe que lo amas.
Duele escuchar a otros niños hablar y saber que tu hijo quizas nunca hable.
Duele saber que quiza nunca te diga mamá te amo, duele.
A mi nadie venga a decirme que el autismo no duele porque si, si duele y el dolor hay dias que es muy muy muy fuerte casi inaguantable y hay dias que duele menos pero siempre duele y no existe una pastillita que quite este dolor.
Con este dolor caminamos todos los dias, con este dolor sonreimos, con este dolor seguimos nuestro camino no paramos, porque detenernos significa regresion en mi hijo y las regresiones ufffff eso si que duele y ese dolor es uno de los mas fuertes.
Autism Hurts
A note written on Facebook by Surjeily Lebron on Saturday, June 30, 2012
"Be thankful to God that your little boy has autism, at least autism doesn't hurt"
It is way too early to listen to stupid comments from people.
Who told you that autism doesn't hurt???????
Of course it hurts! It hurts when it takes you an hour to try to decipher what's wrong with your child only to find out he was just thirsty.
It hurts when he has a fever and pain somewhere in his body but he can't tell you where.
It hurts when Santa Claus and the Three Kings bring presents and you see all the other children playing with their toys while yours just wants to play with the boxes (being 9 years old)
It hurts when your son feels sick and the doctors tell you, "nothing is wrong, he's fine," yet after days and hours he passes a kidney stone while urinating.
It hurts when he is sad and there is no way of you knowing why.
It hurts when he comes home from school just furious and you have no idea what happened.
It hurts when he plays in the park and you see the other parents moving their children away from him.
It hurts when you're at Wal-mart and some imbecile tells his little girl "come, move away from that boy!"
It hurts when no doctor can figure out what's wrong until they see him vomiting blood.
It hurts when you get those strange looks.
It hurts when you have to deal with tantrums typical of "the terrible 2s" only your son is almost 10
It hurts when you are rejected by your own "family"
It hurts that at his birthday party the only kids there are his cousins and his brother.
It hurts when he is hungry but you can't tell what's wrong
It hurts not knowing if he knows how much you love him.
It hurts to hear other children speak knowing your child will never speak.
It hurts to know he will never say, "Mommy, I love you," it hurts!
Don't anyone try to tell me that autism doesn't hurt because yes, yes it does hurt. There are days that it is very very very hard, almost intolerable and there are days when it hurts less, but it always hurts and there is no pill that can take away this hurt.
Yet with this pain and hurt we walk every day, with this pain and hurt we smile, with this pain and hurt we keep moving on this journey and don't stop, because stopping means a regression in my son and the regressions, oooof! That is what really hurts and it's one of the worst of pains.
Charles "Chuck" Colson was born on October 16, 1931 in Boston, Massachusetts. He died on April 21, 2012 from complications of a brain hemorrhage. Some people have heard of him as a Special Counsel from 1969-1973 for U.S. President Richard Nixon. Colson for the last 36 years was a leader and prolific author in evangelical Christianity, and founder of the organization Prison Fellowship. Not everyone may know that Charles Colson, the towering figure that he was, was brought to his knees in order to communicate with his, now 20 year old, grandson Max who has autism.It was with vigor and enthusiasm that Charles Colson approached being a grandparent of a child with autism. He has helped the autism community by talking publicly about how his faith was impacted by having a grandson with autism, especially as he witnessed the love demonstrated by his daughter Emily, as she raised Max as a single parent. Charles Colson is being named an Autism Light for the contributions he has made to autism awareness as a grandfather and as a leader in the faith-based community. Charles Colson was placed on theAutism Light Memorial Roll and this post updated, as he passed away the same day he was named an Autism Light. Christianity: Charles Colson converted to Christianity in 1973. He served his prison sentence for his role in Watergate, and out of that experience he founded the organization Prison Fellowshipin 1976. Prison Fellowship is the world's largest organization for prisoners in over 100 countries. Much of his writings are available for reading at theColson Center website. Awards: Charles Colson has received numerous awards. Two awards Colson received were the Others Award from The Salvation Army in 1990 and the Presidential Citizens Medal by President George W. Bush in 2008. Author: Chuck Colson is a prolific author or co-author of over a dozen books about his life, faith and views of society from 1976 to 2011. His first book Born Again was published in 1976 and his most recent The Sky is Not Falling was published in 2011. The bookDancing with Max that he co-wrote with his daughter Emily is of a personal nature likeBorn Again. You can read more about Charles Colson's books and awards at his Wikipedia page. Biographer Jonathan Aitken in his bookCharles Colson: A Life Redeemed said about Colson: With infinite patience and constant attention he has built a close and good relationship with his autistic grandson, Max. This private achievement has required more effort and more love than many of Colson's public achivements (Source). Jonathan Aitken also concludes that, "Colson communicates well with all his grandchildren, even though he is in some ways closest to Max as both a father figure and a grandfather (Source)." Dancing With Max: Charles Colson wrote the introduction and epilogue to his daughter Emily Colson's book calledDancing with Maxthat was published in August, 2010. Emily Colson raised Max as a single parent, making Charles Colson a father figure as well as grandfather to Max. One of the highlights of Charles Colson's family and ministerial life includes being given the opportunity to baptize his Grandson Max, who made a profession of the Christian faith. The following is Colson's weekly segment called 2 Minute Warning from September, 2010 where he discusses the bookDancing with Max.
Although Charles Colson is a leader in the Christian world who has wrote dozens of books and spoke to millions of people around the world about his faith, he said that he continues to learn new things about God by witnessing the unselfish love demonstrated in his daughter Emily toward her child with autism. Here are two favorite quotes from Charles Colson directed toward parents of children with special needs.
"Watching Emily, and other parents of children with special needs, has taught me what it means to love in the biblical sense of the word agape (Source)."
"Being the parent of an autistic child, or any child with special needs, requires a level of commitment and dedication that is impossible to understand unless you've been there (Source)."
Here are some additional online information on Charles Colson's discussion of autism.
Dr. James Dobson Family Talk: Charles Colson and Emily Colson were on the Family Talk Radio Broadcast discussing their relationship with Max. Their Interview with Dr. James Dobson can be listened to online.
World Over: The World Over segment from May 19, 2011 features an interview with Charles Colson and Emily Colson about their relationship with Max and the book Dancing with Max.
Special thanks to Charles Colson for caring about autism and being a wonderful grandfather to Max. Your efforts are an example to the multitude of grandparents of people with autism, especially those that share your Christian faith. Autism Light honors diverse heroes to the world of autism.
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