Tuesday, June 10, 2014

the difference of a year

I went to the dentist for the first time in 6 years last month. Seriously. It was a supreme act of martyrdom on my behalf. I'm too busy to take care of me- I said, benefiting not a soul. So I finally sucked it up and went. Today I had to go back to get an old filling replaced and a new one put in. The work that needed to be done was on both the left and right side of my mouth but I requested it be done all in one appointment.

Are you sure? Dr. Gutierrez asked. Your whole mouth will be numb today. I don't mind if you want to come back in a different appointment.

More dentistry? No thanks. Besides, I'll take physical over mental discomfort any day.


And he numbed me up and gave me ten minutes to process. Michael stopped into the office to take care of a bill and popped in to see me. As we talked my mouth started to go numb. And I tried to continue to speak, the sounds wouldn't come out right. I tried to coerce my mouth muscles to do what they are supposed to do and no matter how hard I wished and tried, they just wouldn't.

My entire body started to shake. Practically convulse. My arms, my head, my legs. I could hear the chair shaking under me. And my heart bled out all over the floor in front of me and I started to sob in a panic so painful I could taste it. How am I going to pick up the kids from therapy? How am I going to do anything? What if something happens? What if I need something? I can't speak at all. I was unraveling and loosing control because the whole time this is all I was thinking...

This is how Greyson must feel. Every day.

I couldn't bear it. My brain willing my mouth to work and nothing coming out right. I would be so scared. So lost. So anxious. So hopeless. So confused.

Are you going to be okay? Michael asked when he say my eyes.

We must help him.
We must help him.
We must help him- I kept saying in a panic.

We are, he said earnestly.

No, no no. We must help him MORE. We must do more. I sat there feeling hopeless. Feeling like my skin was too tight and I wanted to rip it off and start running until my feet bled.

Can you go donate $25 to our autism speaks page? I asked Michael. Knowing that won't do a thing to ease this current ache or situation, but lately, I just want to DO. I don't want to TALK, I want to DO. And as I type this out, it sounds funny to me. What can $25 dollars do to help Greyson speak? I know it didn't fix anything. But I needed to pretend like something- anything was in my control.

I can't remember the last time something scared me this much. I'm grateful for the perspective because sitting in that dentist chair is something I will remember the next time Greyson has a melt down over not being able to communicate. 

And I want to take a minute to acknowledge those of you affected by autism that don't like the organization, Autism Speaks. There are parents that don't like that 50% of their funds are used for prevention and cure research- as opposed to helping individuals living with autism today. There are adults living with autism that don't want a cure and find it highly offensive that they are trying to be "fixed" when they aren't broken. The founder Suzanne Wright made a call to action to our national government requesting more funds be given for autism research. She used highly colorful and alarmist language: "These families are not living. They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely - 24/7. This is autism. Life is lived moment-to-moment.  In anticipation of the child’s next move. In despair. In fear of the future."

I respect and acknowledge all of your concerns as valid. Here's why I believe in the organization. When Greyson was first diagnosed, I needed them and they were there. I needed resources, facts, tips. I didn't need opinions on vaccines or information on 100 different diets- each one swearing they were the only and the best. I believe in the letter written for funding from congress. Our government is broke. Like 18 trillion dollars in debt. The highest it's ever been. She HAD to write about worse case situations. We must always advocate for our very own people that need the MOST help and struggle the most. For some people her description is reality. Maybe not for us. She can't go to congress and say- hey, we need funds and money. And autism is actually like one big fun party and no one anywhere struggles and our children don't need to fixed. For me, her letter was not personal. It was business. If we believe there needs to be more resources for people living with autism today- then we must be that change. We can't look at their organization and say what you are doing is wrong based on MY vision. You don't have to believe in them or even donate to them. But I wanted you to hear my heart.

And trust me- the more I learn and know- the more I listen to the nudge's that life gives me the more I think one day I may even end up advocating on behalf of individuals living with autism.

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Last night Greyson had his end of the year program at his once a week typical preschool. Last year's was a capital N Nightmare. This year I had zero expectations. Scratch that- I kind of expected it to be horrible. I wasn't dreading it- I was just preparing myself for horrible...which never really works because the horrible still ends up feeling horrible- so I really need to reevaluate my methods. Thanks for that. Y'all are better than therapy.

Where are we?

Oh, yes. The school program. Last year it was as good as my dentist appointment was this morning. I wanted Grey to try and stand on the stage for one song of the program. He filed out with the other children and took his place on stage.  His has a personal teacher shadow that stays with him during preschool. She was there with him and he fell into her like a limp noodle. She tried to pull him back up and he hit her. I was in the front row so I tried to subtly go on stage to... to... I don't know what I was doing, I just needed to stop the train wreck. And Grey started running and screaming and I realized I was making it worse- so I sat back down. But then Michael went on stage and he was chasing Grey. And it was like a terrible episode of the Three Stooges. After Michael (finally) caught Greyson we just left. I got into the car and cried.

So- at least you can see why I was expecting something close to the same. As soon as we got into the auditorium Greyson wanted to leave. It was too loud. He put his hands over his ears.


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However, Parker was dying to be on stage.


One song, buddy. You need to do one song for Momma and for you- because I know you can do it. I know it's loud and I know it's hard- but you can do it.

Greyson waited in the back until his song and I saw him file out. I was holding my breath hopeful. And the singing started and I knew it was too loud. He put his hands over his ears. He didn't do the gestures like he had practiced in school.


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And it was AWESOME. ALL CAPS AWESOME. There was no hitting. No running. No screaming his bloodly lungs out. Michael and I stayed off the stage. In other words, it was all perfection. I love how my ideal of perfect is evolving. It only took me 40 fricking years.


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By the end, he even took his fingers out of his ears.


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Me- PROUD. Him- afraid I am going to make him go back up on stage and wanting to get in the car.

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We went out and celebrated like he won a Pulitzer Prize or an Emmy. We had frozen yogurt. I assume that's what most very important prize winners do.

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And went to the park

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And we swang into the sunset. Imperfect is the new perfection.

Love,

Chrissy

To commemorate Greyson's 5th birthday we want to make the world a better place. During the month of June, please consider donating to your community or any charity. No amount is too small. Seriously. And if you don't mind, tell me about it on FACEBOOK, or send an email to lifewithgreyson@gmail.com so I can keep tally. We are trying to raise $100,000! We have an Autism Speaks tribute page set up for Greyson and Parker. If you would like to donate there, click HERE. I'll post an update once a week.

And check out one charity someone is donating to. 99 Balloons and Baby Eliot will change your life.







16 comments:

  1. Great job Greyson!! Yay!!

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  2. Way to go, Greyson!! You DID IT! :-) I think yogurt is a great way to celebrate. And way to go, Chrissy!! You're award-winning mom-ing in my book! :-) Nobody could be a better mother to those boys than you are! :-) Happy Wednesday!!

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  3. This post reminded me of my middle child, Ethan. For his Kindergarten graduation, I was nervous. I kept telling his teachers that I was worried. He does not have Autism. He has Apraxia and sensory issues. However, he is extremely social. For some reason, though, my mommy instincts were telling me that he would not like the ceremony. I was right. He would not even cross that stage for his brother. Finally, one of the teachers walked across it with it, and it was clear that he was scared to death. As soon as he crossed, I scooped him up, and he sat in my lap for the remainder of the program. My biggest regret, to this day, is that I did not cross that stage with him. I had thought that he could be just like his peers, and I wanted him to have that success. Really, though, I wanted the success for me, too. After the ceremony, I realized so many things. I discovered that scooping him into my arms was exactly what he needed. I also decided right then and there that I would never put him into a box that society deemed appropriate but that might not be the right fit for him. As special needs mommas, we learn, we cope, we encourage, and we celebrate. We celebrate BIG. I love the ice cream and the park. You are a super mom, and Greyson is a super kid!

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  4. I just found my way to this blog through Kelle Hampton's blog. My son, also 5 years old, has autism. He recently had his end of the year Pre-K program. Although he did not participate in the singing, he stayed up front and did not have a melt down. I too was ecstatic over this success. Also, I wanted to mention that my son likes to wear some noise reducing ear muff/headphones in loud situations. He has cute blue pair we found on Amazon. He has began taking them off after he grows accustom to situtations. He has even been able to successfull enjoy a movie at the theatre. He wore the headphones for the first few minutes then took them off. He also uses them in church when the organ is played. At the beginning of the year, he wore them during music at school, but no longer does. Music is really difficult for him.

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  5. This brings tears to my eyes. I know how I feel when any of my kids are in physical or emotional pain. Experiencing the numbness at the dentist too - wow. And you did so great with the performance. YOU did. G was great just being himself. :o) But it's so hard for us mommas to take the step back and accept things, and our lives, and ourselves. Long time reader, love your blog. xoxo

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  6. Jennifer MiracleJune 11, 2014 at 7:20 AM

    Grey can do hard things, too. He must have learned that from his Momma.
    We also had preschool graduation this year. I wasn't sure what to expect, Jace runs hot and cold. I decided we were going to go & if he sat in the audience & watched, that was ok, too. But he got up on stage with his friends. He stood up there & hung his head and pretended he was sleeping. He never sang a peep, gestured, or opened his eyes until the song was over. I was so proud. See, at the Christmas program he panicked and ran and hid under the Christmas tree. So, this was progress <3
    Changing my expectations & learning to love the boy God gave me - not the boy I think he should be. I am a lucky Momma to have him. Thank you for helping me remember.
    Love & happiness to you, sweet Momma! xoxoxo Miracle

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    1. "Changing my expectations & learning to love the boy God gave me - not the boy I think he should be"- Love this... you sound like a great mama too Jennifer Miracle ;) - K

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    2. Thanks K, that made my day <3

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    3. Yes, I love every ounce of it. I love that he pretended to sleep and stayed up there. I am celebrating with you. Love and happiness to you too.XOXO

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  7. You brought me to tears yet again Chrissy. I'm so happy you got to experience seeing Grey up on stage with all the other kids. From one mama to another, I totally understand how big of an accomplishment this is! -K

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  8. What a difference a year can make! I am proud of Greyson. We had a similar experience at my little one's birthday party over the weekend. He was having a great time until we sang "happy birthday"....he cried and cried, and I felt so bad. I should have skipped that part...but now I know.
    I also appreciate your feelings and putting it out there about Autism Speaks. I totally agree with what you are saying. I consider all views for or against it, but if I am being completely honest- I don't want my son to have autism. If a cure was found- I would be ecstatic. I love him with everything I have- and seeing him struggle breaks me. They were also there for me pre and post diagnosis...just like you :)

    -Colleen

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  9. wonderful read. thank you! beautiful pictures! your boys are so stinkin beautiful that i want to reach through my computer and squeeze them!

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  10. Tears for sure Chrissy. The voiceless voice of our kids is so incredibly hard. My sweet girl turned 4 yesterday, so happy birthday Greyson. She also just had her school program and I was a nervous wreck beforehand, trying to cry out all of my tears so that there wouldn't be any left for when we get there! She looked so nervous, but did it. Our kids are super heroes, it's amazing how much they have to overcome in a single day. Good job mama, all that hard work is paying off!!! :)

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  11. Thank you for sharing your life. This post made me laugh and cry. Thank you.

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  13. You've been avoiding your dental appointments for too long. I'm glad you finally decided to go to the dentist. You had them all done in one day? No wonder your mouth is going numb. Haha! Remember to break them down in sessions, so you won't have to be uncomfortable for too long again. Take care and I hope you feel better soon! :)

    Leigh Hamilton @ Arborridge Family Dental

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