Star Struck!

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!!!

I just wanted to ask a simple question: based on his experience, what can he recommend as the best and worst things I could do for Nathan? Kerry sent me some links to various places online where I could learn more. Here is a list of resources he shared/recommended:
http://www.autismspeaks.org/what-autism/treatment
http://www.autismspeaks.org/family-services/tool-kits
http://www.myautismmyvoice.com/2012/02/top-10-autism-therapies.html
http://www.disabilityscoop.com/2012/08/16/temple-grandin-strengths/16264/
http://www.myautismmyvoice.com/2012/02/my-name-is-kerry-and-i-have-pdd-nos.html

Here is part of Kerry's story, including some words by his mom from the Autism Speaks Blog:

20 Years of Autism: A Mother and Son Perspective

March 5, 2012Autism Speaks

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 15^th 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.

To see the actual blog post, please visit: http://blog.autismspeaks.org/2012/03/05/kerry-mother-son/

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!

Blessings!!!
DC

Please help Kerry reach 10,000 "likes" on Facebook: https://www.facebook.com/kerrymagro88

Kerry Magro is an adult with autism. He is currently part of the Autism Speaks family and shares his experiences with the world through the Autism Speaks blog, Kerry's Korner, his own website, http://kerrymagro.com/ and his blog www.myautismvoice.com.

A Touching Note

Hi everyone-

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!

El Autismo Duele

by Surjeily Lebron on Saturday, June 30, 2012 at 9:38am ·

"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.

Chuck Colson

A great story to share with you. Written by Alan Stokes on the Autisable weblog.
Blessings!
DC

Autism Light: Charles Colson

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 the Autism 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 Fellowship in 1976. Prison Fellowship is the world's largest organization for prisoners in over 100 countries. Much of his writings are available for reading at the Colson 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 book Dancing with Max that he co-wrote with his daughter Emily is of a personal nature like Born Again. You can read more about Charles Colson's books and awards at his Wikipedia page.

Biographer Jonathan Aitken in his book Charles 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 called Dancing with Max that 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 book Dancing 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.

• Breakpoint: Charles Colson had a website called Breakpoint with regular features. He has a Breakpoint Article called Autism and Agape: What Max and Emily Taught Me.
• 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. 
• Joni and Friends: An inspiring report on Chuck Colson's relationship with his grandson Max can be found on the Joni and Friends episode called "When Disability Hits Home".
• 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.

Social Media: You can interact with Charles Colson, his family, and work on his Official Updates from Prison Fellowship.

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.

Photos: The photos in this post were used with permission of the administrator of the official Read original post

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Hi everyone!!! We've had a rough few weeks at our house, so my posting has been sparse. I apologize for that. Here is a great little post from the Autism Speaks blog called "Athletes for Autism."
Blessings!
DC

Athletes for Autism! 

Monday, July 23, 2012 Autism Speaks

We would like to congratulate Ernie Els and Elliot Sadler, two incredible athletes who have made huge strides for the autism community by spreading awareness and raising funds for research and services!
On Sunday, golfer Ernie Els won his second British Open, the fourth major victory in his career.  Els' son  Ben has autism. The Els family established 'Els for Autism' in 2009, where they are committed to funding scientific research aimed at understanding Autism and developing knowledge-based treatments with the intention of finding a cure. They also fund Centers of Excellence which include all of the following; Educational programs for students age 3-21 years, A services component of doctors, speech therapists and other specialists, An on-site research center, A continuing services program for adults with Autism Spectrum Disorders. Find more about Els for Autism here! Els shared his story in a public service advertisement as part of Autism Speaks "Learn the Signs" Ad Council campaign. Watch the clip below:

  Also on Sunday, Elliott Sadler won the NASCAR Nationwide Series race at Chicagoland Speedway. The Hermie and Elliott Sadler Charitable Foundation is dedicated to raising autism awareness and promoting research for a cure while also supporting initiatives that improve educational opportunities for children and their families. The Foundation provides support to projects that share the ideals and concerns of the Sadler family. Find out more here!

Tantrum vs. Autism Meltdown

Hi everyone! I borrowed this from the Autisable weblog site. It is just too good not to share. Please take a look. This chart is fantastic in helping us understand our kids:

Blessings!
DC

An Important Message

Hello everyone! Well, my last post was pretty depressing, I know. Part of my sadness stemmed from hearing about a very well known and prominent rap artist, 50 Cent, making some pretty ugly remarks about people with autism and special needs. I didn't really want to get into it in my last post. I've been thinking so much about what to write and today I saw this video. It says everything I wanted to say, so I leave it here for you.

I could not have said it better myself! 50 Cent did more for autism awareness in one day than I honestly believe we were able to accomplish in the month of April. Let's work together and use our power in numbers to effect change in our communities!

Blessings!
DC

Heartbroken...

Hi everyone!

Today was a tough day. My grandmother was supposed to come visit... it was on our calendar and the little man was all excited. Yesterday she fell and broke her hip and needed to be hospitalized, meaning she will not be coming to visit after all. I had to tell him last night and he was SO upset when he saw me erasing "Abuelita" (meaning "Grammy" in Spanish) from his calendar. He was most upset that she had a "boo boo on the leg" (his words). I told him that the doctors were going to help her get all better and that she would get a BIG band-aid. Last night he couldn't sleep because he was crying and asking questions about Abuelita's "boo boo." "Is her boo boo on the leg very red, Mommy?" He was asking if her injury was bleeding? Who says kids with ASD lack total empathy???

I think I was more upset about this event that I realized, or maybe I was caught unprepared when I was slapped in the face with seeing my little man outright socially rejected by some kids. This was not the first. The most egregious happened about a week ago, but a series of events today led me to write the following posts/comments in various social network websites. I am heartbroken for my son... I know it's only the beginning of a life-long battle of social injustice based on his "differences." I guess I expect this type of rejection from just anyone off the street, but it certainly hurts beyond measure when it's from members of OUR OWN CHURCH!! I'll let my posts do the rest of the talking:

"I am having a BAD day, folks, so don't get me going! No, your child doesn't have to like my child... nor do they have to play with mine... but it sure wouldn't kill you to teach them to be NICE to my son!!!!!!!!!!!!!!!!!!!!!!!!! 

You see, I expect rejection from some, but this one hit really hard and deep. I wish these were strangers, but they are not. These are people who have known us for years, even before the little man's diagnosis. That's why I say they don't have to LIKE him, but it wouldn't kill them to be nice. Excluding him on purpose and pushing him away from playing with other kids... NO EXCUSE!!!

I believe that it's human nature to shun anyone who seems different. In nature, it's a basic instinct that every species avoids that which is different. We avoid what is different because it seems foreign to us and, therefore, can cause fear and uncertainty. As humans we are born with the cognitive capacity to over-ride this instinct and as parents it's our responsibility to show our children how to be accepting of people's differences. Babies learn through exposure and observation since they behave by imitation. For example: a child born to a home with a dog would not think twice about approaching another dog because dogs are familiar. However, a child who has never been exposed to a dog will fear them. We've all read about 'the boy raised by wolves'...not scared of wolves but terrified of humans because of the environment in which he was born AND the modeling he observed from his pack.

It takes effort, guidance and constant MODELING for children to "get it." Kids learn from what they see: anything from intolerance, violence, cruelty and even racism...but also kindness, love and acceptance. This makes talking the talk just as important as walking the walk. You can tell them what to do a million times but if you don't walk the walk, everyone will see it through your children. Mark my words! Your little ones only show the world what they really see at home...

Then there's the issue of temperament. It is interesting how in the same family one child can be so mean and awful yet the sibling is the exact opposite. I guess the younger one has learned to be kind and tolerant because the older one is so intolerant and cruel. Still, as a parent your responsibility is to guide and discipline when that temperament affects others. Like I said, we're not asking for your child to LIKE our son, but it certainly is YOUR responsibility to teach them that encouraging others to exclude those who are different is cruel and unacceptable...and that is on YOU!"

I'm nursing a broken heart today, but I'll be OK. The little man is already over it. He is such an amazing soul!!! My son may have ASD but he's one of the kindest-hearted and most forgiving people on this planet! I need to relish in his kindness and love knowing I'm doing all that I can... even if those who "should" be kind and loving are NOT! I WILL BE OK because I am more than a conqueror through Jesus Christ! Just like Abuelita's "boo boo" will be "all better," my heart's "boo boo" will also be "all better." You see, the minute my husband walked in the door from work today, the little man jumped in his arms and said, "Papa, I am SO happy!" 

That's my boy!!!

Blessings!

DC

But, Lord, I'm Not Good at Baseball!

So much has happened in the past month it's really overwhelming:
1. I managed to survive another school year with a full caseload and all my paperwork done ahead of time! Praise God!!!!
2. Our little man finished his first full year in preschool having made 2 really good friends.
3. I was awarded a Certificate of Appreciation from the New England Occupational Therapy Educator's Council-- and got to receive it with my best friend, and my "ASD-mom-mentor-colleague," both in the audience! What a blessing!
4. The little man passed his first level swim class (I mentioned that in my last post)-- in a class for TYPICAL kids!!!
5. The little man was invited to THREE birthday parties from his classmates at school!!!

The list keeps on going...but life is not all about awards and successes. Being out of school and home for one straight week has NOT been easy for my little guy. First we found out that his two really good friends will not be in his class next year. I am heartbroken. That same day I injured my back keeping the little man safe during a major meltdown at one of the birthday parties. So when school got out I wasn't up to my spunky "OT mom" self. Because I slacked off, he has regressed in some of his skills.  At one point this week he even said to me, "Mommy, I no like cay-cayshon (vacation)... I want school!" I know he misses the structure and he misses his friends. In my world of public education, most folks count down the days until the end of school...meanwhile in my world of parenting a child with ASD, most folks count the minutes until the return of school. I think this is much more of an issue with kids with ASD than kids with any other type of disability because of the nature of the disorder.

You see, a child or individual with ASD lacks that internal sense of organization; it's part of the neurobiology of autism spectrum disorders. Many lack body awareness due to sensory issues and feel "lost in space." Others, due to their cognitive profile, lack awareness of order/sequence and time (spatial-temporal awareness) and feel "lost in time." For that reason, they depend and rely on external structures like their daily routines. This is believed to be the underlying cause of repetitive and ritualistic behaviors. By doing things the same way over and over, they are trying to get a sense of control over their world that feels completely out of control. It's their way to feel safe. It's been explained to me that without external routines and structures they feel like they are on a free-fall and it is TERRIFYING... hence the increase in the "unusual" ritualistic and repetitive behaviors when things are out of the usual routine. That is why it is so crucial to preview and review any changes to these kids' schedules BEFORE and AS things happen!!!

Here's where baseball comes in: these kids are like a baseball player who is up at bat and just keeps getting tossed one curve ball after another. I can only imagine that after a while, one would just want to throw the bat and scream, "I QUIT!!!" Well, I can say pretty much the same for parenting a child or individual with ASD. Just when you think you've figured things out, ZOOM!, comes the curve ball out of nowhere and you strike out. The thing is we can't say "I QUIT!" Quitting is not an option. I remember when things got the worst with our little man last year... I would cry and sound like I had multiple personalities by saying, "Can't I just put him in a box that says 'up for grabs' and leave him on the side of the road somewhere?" and without even taking a new breath, I'd answer myself, "NOOO!!! Because no one will love him and care for him like I will!" And that's just it: we may want to give up, but we know we are the BEST thing in their lives... we are their mommy/daddy and nothing can change that!

Time passes...
Things start going well again and you think, "I got this!"
You're standing at home plate facing that pitcher again feeling a false sense of confidence because you think you've got it all figured out.
Then curve ball after curve ball (in different directions and at different speeds) you strike out... swinging!
It's not like you weren't trying!
You're exhausted and you feel like a failure.
This time you don't even have the strength to walk away from home plate, much less carry your bat with you.
You just look up and through the tears you yell, "God, I know you know all things and I trust in your promises... But, Lord, I'm just not good at baseball!"

That's when the Holy Spirit steps in and picks up the bat and says, "I got this!" He gently guides your hands... He'll do the work, but you have to do your part, you have to give up control. He's holding you and showing you the way... don't try fighting Him or think you are going to show Him how it's done!

The first pitch is one of those dreaded curve balls.
You cringe and close your eyes... you just can't bear to watch yourself fail again.
Then you feel the swing and you hear, "SLAM!"
You've hit the ball right out of the park!!!
You stand in awe and complete disbelief of what just happened and then another reality hits you:
NOW you have to RUN the bases?!?!?!?
You were worn out even before you picked up the bat!!!
And that's when Jesus steps in and says, "I got this!"
When you think you're toast, He will carry you... the whole way home!
That's why He died for us!

Just like for our kids, giving up control feels like a terrifying free-fall, but it's not. It's a giant leap of faith knowing the Father, the Son and the Holy Spirit are holding us the whole way!

"Being confident of this, that He who began a good work in you will carry it to completion." Philippians 1:6 (NIV)

Blessings!
DC

WATER SAFETY!!!!!!!!

Hi everyone-

So, this is my new "schtick," but for extremely good reasons. Water safety... sounds pretty universal for all children, right? Well, it's totally different when it comes to individuals with ASD. I'm not sure how I got into all of this... I believe in my heart that God brought this to my attention for a reason. I believe He wants me to pass this information on to everyone who will listen. IT'S TIME TO LISTEN!!!!

It's no secret that Nathan loves the water. Well, not long ago I felt in my heart that Nathan needed to spend more time around other children his age, not in artificially created scenarios with a safe adult at home. He was ready! So, we ended all home behavior therapy (yikes!). Instead, we began adapted gymnastics classes (I highly recommend this place, Flips and Giggles http://www.flipsandgiggles.com/) and swim classes at the Boston University pool. Next to the decision to switch his daycare provider soon after his diagnosis, THIS has been the best decision we've made about Nathan's care!

Well, this week Nathan passed his first level swim class... in a regular non-adapted swim class with neurotypical kids!!!!!! I honestly can't express enough how God is always present in our walk on this journey. "Coincidentally" our swim teacher "happened" to have a younger brother with autism!!! Now, we had not told anyone Nathan was on the autism spectrum! Can you believe that?!?!?! God is SO GOOD! Well, here is Nathan's certificate for completing his class:

Interestingly, right around this same time, there was a huge campaign by the company Sevenly (http://sevenly.org/causes) to raise money for The National Autism Association (http://nationalautismassociation.org/). Well, the main fundraising cause was to fund NAA's "Big Red Safety Box." This is a special kit created for families of individuals with ASD:

As I looked into the NAA and The Big Red Safety Box campaign, I learned that accidental drowning is one of the top causes of death for individuals with ASD. NAA is so serious about this campaign that they have created a website JUST for safety information. I highly recommend that EVERYONE with a loved one with ASD go to this website to learn more: http://awaare.org/

So, now our "recreational" activity of swimming class for Nathan has turned into a life-saving endeavor for him. PLEASE, PLEASE, PLEASE, visit this website (http://awaare.org/) to get the information you need to be prepared. If you are still feeling "iffy" about it, watch this video and see the path that the child takes: right over a small bridge over the water:



Still not convinced? Read the following stories. Check the dates of the news stories of the actual cases... all in just the month of June 2012!!!
http://www.autisable.com/764691935/pool-safety-/?cuttag=true
http://www.autismkey.com/tag/autism-drowning-statistics/
http://www.kpho.com/story/17395955/drowning-risk-higher-for-autistic-children
http://www.dailymail.co.uk/news/article-2122545/Autistic-boy-drowns-pond-7-months-twin-brother-dies-way.html
http://bradenton.wtsp.com/news/news/125494-child-drowns-bradenton-retention-pond
http://www.chicagotribune.com/news/local/suburbs/glenview/ct-met-glenview-drowning-family-0621-20120621,0,5581530.story
http://millbrae.patch.com/articles/neighborhood-mourns-loss-of-girl-who-drowned-in-san-mateo-lagoon-f3b9bca9
http://abclocal.go.com/ktrk/story?section=news/local&id=8711377

Are you listening now??? Please visit the websites for your local YMCA or local colleges to see if they offer swim classes. You can also check through your local Red Cross association.

Blessings!
DC

P.S. Here is my awesome Sevenly shirt for the NAA cause. I love it!!!

BBC's "My Autism and Me"

Hi everyone! This video is a MUST SEE and a MUST SHARE!!!! One of my friends shared it with me on Facebook and I wanted to share it with all of you. It's made by the BBC from the UK. It is incredibly well made! Please take a few minutes to watch it. It was so informative and so wonderful to hear it right from the perspective of the individuals themselves. A true insight into the minds and lives of our loved ones with ASD.

Blessings!

DC