Tuesday, March 13, 2012

Awareness

Dear Friend,

Today I need your undivided attention. Today I am not asking politely, I am begging you. Momma to momma, friend to friend. Whether you've known me forever, or whether we have never met. Share these words. Share my story. I need your help in changing the way the World sees anyone who is different.

These are important words and stringing together the right letters to appropriately convey what is inside my soul right now is almost impossible, but I will try. I will try because I expect Greyson to do the impossible (and he often does), and I must lead by example. When I write from my head, it is safer and from a distance, but I can finesse and I can fine tune. When I write from my heart, it is a little less pretty, a little more painful, yet 100% real.

My husband, Michael, is out of town for the week. I woke up today and realized it was only Tuesday....and it felt like Monday....of next week. When I realized it was only Tuesday I laughed out loud. Holy Cow. Tuesday.

Today we had an appointment at The Central Valley Regional Center, a private non-profit corporation funded by the state of California to provided services to people with developmental disabilities.
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Greyson's Third Birthday isn't until June, and that is when we were initially told we would have a diagnostic evaluation for Autism. I did my research and I'd heard good things about a "Dr. G", so I requested that he conduct the evaluation. If I wanted to see him, we had to go- Today.
I heard he was attentive and thorough. And if we were to get an Autism diagnosis, I needed it to be from someone who spent time with Greyson and time with me.

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I needed it to be from someone who would look at my boy and see Greyson Michael Kelly...not a chart, not a statistic, but a sweet boy who loves trucks and drawing and running around outside.

Going into the appointment, I wasn't worried in the slightest because they had already let me know it takes a few months for Dr. G to diagnose and issue a report. They said he wouldn't do it on the spot.

Apparently I was wrong. Apparently he does diagnose on the same day.




So World, I want to share with you that I have a son, and his name is Greyson. He is almost 3 and he is so perfect and he is so beautiful that I still can't believe that he really belongs to me. He makes me believe in God and in Magic. He doesn't talk much, but when he does, he lights up my World...and he has Autism.

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And although this isn't shocking to me because he fits the diagnostic criteria, I am still shocked. And if people could die from sad, I might not be here typing these words right now. I secretly hoped the Dr. would tell me Greyson was actually allergic to the color green and he and I would laugh at how hard of a struggle it has been and how easy it was going to be to fix. I would say, I can't believe I didn't think of that and I would go home and eliminate green from our life, and the light in Greyson's eyes would come back to me. But that's not what happened.

I know in a few days the sting will wear off. I will rediscover that beautiful fire that makes me wake up every morning and do everything I am capable of doing to help my son, the one who came down from heaven with a magic wand almost 3 years ago and made me a Momma for the first time. But right now, I am reeling a little.

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Here we are after our appointment, nothing has changed within Greyson. Despite a medical and scholastic label on a chart, he is still the exact same wonderful boy that he was earlier this morning. I know, friend...I know.

Please, if you are a Momma, go hug your babies. They are such precious gifts. And for today, when they call your name 100 times...Mom! Mom! Mom! Mom! Mom! and you want to pull your hair out-be grateful that they can talk.

There are no guarantees in Life, no guarantees in Mom-ing. I accept this struggle into my Life because it makes me better. My life is enriched because Greyson is in it. It is harder, but it is better. He is a gift I do not take for granted.
He teaches me how to live a good life.
He teaches me about patience. He teaches me that the World cares. He teaches me about different. He will teach his brother Parker about patience and unconditional love...about acceptance and tenacity.

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He already teaches me to find joy in the small things like I bet your babies teach you.

Please help me create a World filled with knowledge and acceptance for Autism so that I can create a better life for my son, Greyson. Oh friend, he is my heart! Talk to your children about the beauty of a World filled with differences. Remember, people are like ice cream, the more kinds, the better!

Talk to your children about Autism and about what makes Autistic kids different and any child that is different than them. Kids are perceptive, they know when a child looks differently, or talks differently or acts differently. Teach your child about patience. My son processes things slower, it takes him longer to learn. Teach your child about how good it feels to help others by helping us to share this message.

Invite my son to birthday parties and to play dates. Don't be afraid to ask me questions, you can ask me anything! Look at Greyson, talk to him, tell him hello.
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I rarely ask for favors, but I need you to do this for my son, and for itty bitties like him everywhere, because I can't change the fact that Greyson is Autistic, but I can change the World.



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I will reach him.

Please share our story. Please help me create more awareness for Autism.  You never know who will benefit from these words.



Love,
Chrissy


40 comments:

  1. A beautiful post as always, Chrissy. Beautiful photography, too! Today was not the type of milestone day you were looking forward to. But we (the world!) are already learning so much from you guys...and from Greyson and his tiny bro, too. I can't wait to meet little Greyson again; it has been far too long; and get to know this amazing little man ad his bro...and RE-get to know his amazing momma and papa!

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  2. Chrissy,
    Thank you so much for your blog. I will share it with everyone I know. I am very proud of you Momma!!!
    My family began our journey twelve years ago when my son Zaccary was diagnosed. He was the same age as Greyson. Fortunately awareness and assistance for people with autism have increased dramatically since then. However, we have a very long way to go. We can get there if we stick together and fight for our babies. You are in my heart and my prayers. And yes....we will change the world.

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  3. A dear friend posted this blog on her facebook page & asked her friends to read it. Having done so, tears streaming down, I know why. Your love, acceptance & unconditional gratitude for your precious gift, Greyson, will make all the difference in his life. There are many of us, older mothers, who have walked paths similar to yours and are here to provide support on your journey. You are not alone & Grayson will be loved by families you haven't met yet. Prepared to be surprised by all the joy you will share with your beautiful, perfect sons - both of them! God bless you all!

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  4. Google "Jacob Barnett". He, too, was diagnosed with Autism at a young age. Now, he's changing the world.

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  5. I read your words through tears, because I could have written every single one of them. My son Brody, who will be 3 at the end of April, is Autistic. I remember them saying that to me and just reeling. I cried for a week. But therapy works! And he will always, always be perfect to us. I join with you in the fight to not change our sons, but instead enlighten the ignorant! Hugs to you and your gorgeous boy!

    Ally cogburn

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  6. I don't know you, but I have read your story via a mutual friend. What a beautiful boy you have and what a wonderful Momma he has. I will help spread the word and help to change the world. If you haven't already researched GAPS (Dr. Natasha Campbell McBride. Google gaps.me), please do! She is helping change the world by helping many, many, many autistic children heal from their symptoms and their diagnosis. I am part of a GAPS family group here in Truckee and would love to support you in any way, however I can. So much is being learned about Autism every single day. I wish for healing for you son and family. Diane Petersen

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  7. Wow. I'm sure you will hear from many mothers like me, touched by your story someone linked to on facebook, because we lived your story. My only two pieces of unsolicited advice comes from a place of love and were the best words I could hear in those first dark days of grieving. We are our children's only advocates. If WE won't shoot for the moon for them, who will?

    Grief will take residence in your heart, cast a shadow on your soul... but you won't let it take over your mind! A rested mind is a FERTILE field and you will need time for YOU to replenish the soil. My personal release was SWEAT. I would run and run and cry until my sweat and tears became one. Once the shock wore off, those long active meditation sessions gave me the best ideas for challenges we were addressing, new ways to encourage speech or interaction and strangely new energy to tackle the new challenges of changing diet, creating flexible routines and systems and maintaining an environment that would allow for the combination of play and learning all rolled in to one.

    Changing Diet changed our lives. The Specific Carbohydrate diet.
    ABA/IBT changed our lives. "Overcoming Autism" by Lynn Kern Koegel was a good resource.

    You CAN do this.

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  8. Beautiful words...BEa-U-tiful boy....God-fearing momma. You are strong, your faith is unstoppable, and your willingness, motivation, and advocacy are admirable. I will pray for your family. Thanks of sharing.

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  9. You are so special. Reading your SO touching words touches my heart in so many ways! There are always happy and sad tears. Sad because they (children) will some day grow up and happy because some day they will grwo and be wonderful young men and ladies in spite of our the mistakes and "bad" things(according to Spock,other moms, aunts etc)we do/did while they were growing up. Hug and love them, i mean EMBRACE them and it will amaze you what they can give back. know- my 3 give back to me alwys!! Iy is a wonderful feeling. Please keep writing and sharing as you do with your marvelous words and pictures. You inspire me!

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  10. I will be praying for you and Greyson and your entire family! I so admire you and your determination! My mama's heart hurts for you. But I believe you are already changing the world!

    As a good friend said to me today "God is good and He hears our prayers!"

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  11. I will be praying for you Greyson and Parker and Michael.

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  12. You are an incredible mom and Greyson is an absolutely amazing little boy!!! Your boys are both so lucky to have such a great champion and cheerleader in their corner! I have been reading your blog and am so inspired by you! Please know how many people you have touched with your words - and how many you have made more aware! I And I totally agree with you - together we can change the world! I am praying for you and your family! Hugs to you and Greyson!

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  13. Again, incredible. You are a beautiful story teller with even more beautiful inspiration. Our family will be sure to keep yours and all those who need them in our prayers!!

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  14. Thanks for sharing your story Chrissy. I have 4 young kids and I will endeavour to make them aware and teach them understanding. Love and hugs to you and your beautiful boys xox

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  15. What an incredible post Chrissy. You are such an inspiration to me. I can't even tell you how much you and your family have impacted my life. I am so grateful to share a little bit of your journey with Greyson. It is always such a joy working with him, and being able to talk with you! Thank you for being so honest, and brave for sharing your struggles, fears, hopes and dreams. You can and will change the world. "two roads diverged in a wood- and I, I took the one less traveled by and that made all the difference" -Robert Frost :)

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  16. How lucky Greyson is to have you as his Mum. What a handsome young man he is! I know how rough that diagnosis is, even when you're expecting it, but it creates an opportunity to understand how their mind ticks, and from understanding comes a shift - a new energy for coping with those down days, and a new determination to do whatever it takes. The huge strides forward are so very rewarding as you are already finding out. Success isn't what you achieve, it's what you overcome.

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  17. Your unconditional love shines through Chrissy and that is what will get Greyson through the many challenges ahead of him. I have a friend who has an autistic son who is now a teenager so have seen her struggles too. She is amazing with Gav and he is doing so well. Sure he doesn't talk too much but he makes himself understood and is so good on an ipad. He is a wonderful gift from God and yes it does make us appreciate that our kids can speak and do all these things, but he has his special gifts too. May God give you the love and strength to nuture this special child.

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  18. I love reading your blog it makes me feel as a mother we can handle and tackle anything. Your courage and unrelentless efforts make me proud to be a mom. Greyson is blessed to have you, as you are blessed to have him,. Keep upnyour fabulous work, god bless your family.

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  19. Thank you for posting this story. It is incredibly personal and you made it easier for other parents to breathe, we are not the only ones. You family is very fortunate to have you. My younger son was diagnosed with possible Sotos Syndrome, though he has a very mild form, he does display some autistic like symptoms. People can be cruel, self-centered and thoughtless. However, I thank God, that he trusted me enough to give me this boy. I love him with all my heart and though I know he has a hard road ahead of him, I love him the way he is and I wouldn't trade him for anything in the world. Thank you!!!

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  20. Beautifully written - wow what a special Mum you are Chrissy My son Gavin has autism, he is 16. I spent the first 10 years after Gavin was diagnosed in mourning. Only now I realise how much Gavin has taught us and all of those special people around us (he is noisy you can't help but notice him!) about unconditional love and appreciating the simplest things in life - and they are free!!! Chrissy you are so right, it is all about awareness and accepting everyone for who they are no matter how different. As autsim awareness has risen it has made it so much easier taking Gavin out - people stare less and as a result his different behaviour decreases. We all know now awkward we feel when we know peole are looking at us and he is no different, in fact he is even more perceptive than average - and his peripheral vision is exceptional! Thank you so much for reading this - and please spread the word! With love and very best wishes to you all, Fiona

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  21. I love following you and your family on your blog. I miss seeing you. My heart aches for you but not really as these little boys teach us so much and give us so much joy. I will continue to pray for you. God is good and he is sovereign.

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  22. I thought I'd wait a few days to comment so I would know the right words to say, but that didn't work. Just know you have been on my mind a lot. Some things that we know in our hearts don't feel as good once they are on paper. I can imagine this has been tough. You will rock this thing.

    I am jealous that he can lose his diagnosis. Not all of us have that encouraging news about our kiddos. I know you will do everything possible and he WILL lose that diagnosis.

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  23. This was posted through facebook on one of the Autism pages I follow. I have a son with Autism. He is non verbal so everything he signs or the the little bit that he says is magical to me. I have a daughter who is three and is very verbal. You opened my eyes to how I take advantage and even get a little annoyed with how much she talks. I don't think I will ever take advantage of what either one of my kids says again. Thank you for that.

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  24. You have a beautiful child in Greyson. I'm sure he will grow to be a beautiful person and will give you much joy.
    When we need to learn something, a teacher arrives...

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  25. I was sent here by a FB friend a few days ago and haven't stopped thinking about this post. I am a mom of two "typical" sons, but we are ALL moms so your post spoke to me. We would all move mountains for our children - and you have seen your mountain and you're trying to move it! I am raising - trying really hard to raise -- boys who are empathetic, helpful, involved and who can see that every person has gifts to share. Bless you and your family.

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  26. Thanks for sharing your truth and in that we discover your beauty, strength, power and devotion. Your precious family is blessed to have you as their mama. No doubt you are just as lucky to call them your babies. Enjoy this journey and honor it for all its worth.

    So proud of you Chrissy!

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  27. THANKS FOR SHARING THIS CHRISSY. I ADMIRE YOUR STRENGTH,DEVOTION AND LOVE. GREYSON IS VERY SPECIAL AND YOU ARE LUCKY TO HAVE EACH OTHER>

    REALLY PROUD OF YOU CHRISSY

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  28. The problem is the over-diagnosis of the condition into "autism spectrum" - which dilutes the focus on children and adults who are truly autistic...it also drains away money from those who need it most.
    One thought for the future. Look into "precision teaching" - it is the creation of the late, great Ogden R. Lindsley. He passed the baton to Hank Pennypacker. Precision teaching breaks down behaviors into fluencies and allows you to track progress in a brilliantly crafted "standard celeration chart" so that instead of imagining success you can chart progress - and work and multiple criteria to see what needs more work. When advances are incremental and sometimes tiny, they can go unnoticed the perspective of precision teaching makes even the tiniest progress show up and insures that they aren't neglected. If you would like some more information you can email me at wilkesgm@aol.com
    Regards,
    Gary Wilkes

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  29. Chrissy, your blog was introduced to me today via a friend on facebook, and after reading your latest entry I am compelled to pass it along and share with others, which is exactly what you are hoping for.Best wishes to you and your family. I totally get it.

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  30. Hi Chrissy, I just cried my way through this post! I will share your blog via mine and will try and add your button but I'm not quite sure how to do that!
    Sending warm wishes from the french alps to you and your family.

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  31. Thankyou for sharing your beautiful story:)

    It's our story too- May this year was our official diagnosis for my gorgeous three year old son Tristan who has Aspergers. Like you our diagnosis was very quick once we were in the right office.

    I too am changing the world one mind at a time:)

    Love n light

    Selby

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  32. Real and powerful and PERSPECTIVE. Tears. Grateful. Thank you!!!!!

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  33. I just discovered your blog and I am so happy I did. My son is 4- non-verbal and severe autism. He was diagnosed very quickly at 20 months.

    Thank you for sharing your truth. Your hope. Your undying love for your son despite the hardships. I've had a tough couple of days with my son and your words really re-energized my spirit. I will continue to follow your blog for sure. :)

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  34. I just discovered your blog today, after a blog reader sent me the link. What a beautiful post, and it's one I can relate to, all too well. My son, Knox, is also on the spectrum. I will never forget the way that I felt when I heard them tell me "Autism" on the phone after his evaluation. He was just two years old, and I cried for an eternity. Then, I picked myself up and started signing him up for every therapy possible. Today, he is three-and-a-half and doing so, so well. He speaks in phrases and his favorite joke is to tell us that "coffee is cold!" I adore him more than words, and I applaud you for showing your sweet boys to the world and spreading the word that Autism is not a death sentence. Blessings on your and your family!

    (http://www.thesouthernbellebaby.com/2012/08/blindsided.html) <-- My post on his initial diagnosis

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  35. I saw your story today on television. My son just turned 20 years old 4 days ago. Tell your husband to wipe those tears away. I have cried many tears as well but There is hope for your children. My son has always been verbal but no "real" words. He speaks now and has been for many years. Although he is not perfect, as none of us are. He is perfect to me. I am his advocate, his friend, mother, teacher, doctor, preacher and I could go on and on but I know that Autism is not the end of the world. Keep doing what you do.

    Birmingham, Alabama

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  36. Thank you so much for the blog... your sons are absolutely beautiful. And those were my same exact feelings, emotions and reactions to the process. We live in Madera Ranchos and we were referred to CVRC when our son was 15 months, so the pictures as well were identical to our experience. He now is four and still non-verbal but he brightens our day, every day.

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  37. Girlfriend, I hear you and I feel you. I remember this day three years ago, after we received our son's diagnosis. And I remember the sadness that was sharp enough to kill.
    Your words of hope make my soul smile. Because sadness *doesn't* kill, and neither does an autism diagnosis.
    You will do great, mom-aful things while you try to shake this diagnosis.
    And you will do great, mom-aful things even if you don't.
    He'll be beautiful and unique, even if he is labeled for life.
    This will change you for the better.

    With you in this crazy, powerful, emotional, heart-breaking, joyful, life-changing marathon that we are *lucky* to be on.

    -Jenn

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  38. Well said......I have 1 13 year old gift in my life as well....she teaches me daily...i am humbled in her presence,

    Carl, the old guy Dad of Kasie

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  39. Hi, it's Aug 23rd 2013 here in New Zealand where I live. I have a 5 yr old, and 3 yr old twin boys. And one of my boys has a big language delay and displays some behaviours which would suggest that he is on the autism spectrum. We are just starting speech therapy (the play-kind) and will likely go on to be fully assessed to see if he will get a formal diagnosis. So, we are at the beginning of this journey, and I came across your blog, which has been interesting and beautiful, and already useful. I just wanted to share a small 'win' that JUST happened. I was reading your blog, and there's a picture of Greyson above making a surprised-type face. I was reading the text so only the top-third of the photo was showing. James, my son who has few words, wandered over to see me and the computer, and said 'eye, eye'. It was because he saw Greyson's eyes in the photo :-) I just thought that it was kind of special that a photo of a boy who has autism prompted another little boy, who likely has autism and who has little language, to speak. I thought you might appreciate that. BTW your boys are beautiful. Best wishes Mandy

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  40. My son was diagnosed 6 month ago. I cried everyday, my husband, too. Your words will help me to explain all to my daughter (9 years old.) thank you

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