Tuesday, October 28, 2014

I will try harder

I didn't write this, but it is an awesome read. The words that spoke to me the most...
"I can remember laying in front of you begging for you to tell me what’s wrong. Begging you to let me help you. I’m sorry I didn't know what was wrong...
I’m sorry for all the times (I've) failed you, talked about you in front of you like you weren't there or ignored a communication attempt. I’m sorry it took so long to give you a voice. I’m sorry it took so long to give you a choice in everything. And I’m sorry I didn't take your device (your PECs) everywhere sooner — you deserve to have a voice no matter where you are, not just when it’s convenient for me.
I’m sorry for not understanding sooner. I’m sorry so many people hurt you in your life and didn't understand you. I’m sorry some people still don’t understand you and probably never will. I’m sorry for anyone who has ever treated you like you were less, and I’m sorry when I can’t protect you from the people who make you feel that way. I will always fight for you and fight for your voice."
I love you so much my sweet Holden. You were my very first dream come true!!! Your sister was my second! 
‪#‎AutismAwareness‬

Saturday, October 25, 2014

Christmas list

I asked Harper what she wanted Santa Claus to bring her for Christmas this year and this was her list (in this order):  suckers, babies, Christmas supper, water, cupcakes, princesses, oatmeal and kisses.

What a perfect list!  

I then asked her what she thought Holden would want Santa Claus to bring him, and the list was much shorter: water and "school people".

I guess she thinks we need some of those awesome "school people" here at home!  I agree, Harper, I agree!  ;)

Friday, October 24, 2014

Sunday, October 19, 2014

True story from last week... it had been a typically crazy morning (Holden is sick, Harper was... being Harper ;)), and as soon as I arrived at a luncheon today in support of Senator Joyce Krawiec, NC District 31, I saw her wearing her autism pin (as she always does!) and realized that I had walked out the door without mine. But not to worry... Senator Krawiec was prepared with an entire bag of autism pins just ready to hand out! Thank you for your continued support of Autism Insurance Reform in North Carolina, Senator Krawiec. I would like to ask my friends in District 31 to please repay the favor and show Senator Krawiec your support at the polls! It is truly a blessing to have elected officials who care so much!
I'm officially halfway through my first 30 day cleanse and loving the results!! More energy, better focus, fewer cravings, down 9.5 lbs and 2+ inches off my waist and loving this awesome team!! (10/4/2014)

Greensboro Autism Walk




Sib love

On Holden: yellow polo ($2, consignment store), Shrimp & Grits brown corduroys pants ($7, consignment sale).
On Harper: green smocked dress ($4.75, consignment store)

Holden said "BYE BYE" for the first time tonight!!! He was going to bed and for some reason Harper told him "bye bye" instead of "good night", but I'm so glad she did because he immediately said "bye bye"!!! AND... for the first time ever, I saw him show protectiveness towards Harper two days in a row!! I was giving her medicine by syringe last night and she was tired, so she was screaming. Holden hates syringes and when he saw me trying to give her medicine with one and her upset, he tried to pull me away from her. And then again this morning, she wasn't even upset about it, and he still tried to push me away from her! I was so happy to see him being a protective big brother! (9/11/2014)

Jumping Buddies

Saturday, October 18, 2014

Autism Extravaganza


 What an awesome day when a community opens an event up to those with autism.  Instead of worrying about Holden going in an enclosed area with other children and then becoming frustrated, I was able to ask if I could go in with him.  And it wasn't a problem.  It put my mind at ease, Holden's mind at ease and Harper's mind at ease.  What a rare moment that is for all of us!  Thank you!!!





 I love this child's fearlessness!
You can see the fear in her eyes here, but she still did it!!!  :)

Brave is a decision

The one Letter to Read Before Sending Your Child to School

Pay it forward!

Over the past year and a half, I have been so amazed by how many genuinely wonderful people there are in this world, and how many people truly practice random acts of kindness... I am the blessed, grateful, proud mama of a 3.5 year old son with autism. That can be challenging. I am also the mama of a VERY strong-willed 2 year old daughter. That, too, can be challenging. And I am a single mom. That part... I'm okay with!  But, at times, again... that, too, can be challenging, simply because of the physical limitation of only having two hands!  My kids love to be out and about, so out and about we are. We love our adventures and more often than not, we have an amazing time! But there are also times when I find myself without enough hands. Holden might be running away at the exact same time that Harper is screaming "Mommy, HOLD YOU!!!!". And, physically... I CAN do it. (It is challenging, but I CAN do it). But I have encountered so many people who have been not only a blessing, but an inspiration to me. Strangers at the grocery store who offer to hold Harper while I calm Holden. Friends that I just met (that very same day) who automatically start feeding Harper at a birthday party while I'm calming Holden outside the room. Lifelong friends who pick up my sweet girl so I can chase down my little man on the loose. And I just want to say "thank you!" You truly inspire me to be a better person. And... those rare days when I find myself child-free, you better believe, I am looking for opportunities to pay it forward!! 

1st day of school

Love, love, love.

Cousin love


Such a sweet picture... but as the only adult in charge of all five, you better believe I was on high alert!  ;)

You might be an autism mom if...


 You might be an autism mom if... (on vacation), instead of requesting the big room, with the walk-in closet and balcony, you instead lobby for the itty bitty room with no closet space, no balcony and no exterior exit, and... instead of savoring the opportunity to snuggle with your child, you instead sleep on the floor, perpendicular to the bedroom door, blocking ANY exit. Balconies and windows and exterior exits, oh my! ‪#‎AutismAwareness‬

Holden's Story

This interview wasn't easy for Holden, but he's still fighting for Autism Insurance Reform in North Carolina. Can you please help him?!?!? Please make a call for Holden and for all of the children in NC with autism!

Autism Insurance Reform in North Carolina

I have been asking you over and over and over again to reach out to your Senators on behalf of Holden! So... in gratitude for all that you are doing, I wanted to share a bit about what Autism Insurance Reform in NC means to our family. We are so blessed that Holden is currently receiving Early Intervention services at ABC of NC Child Development Center. But in less than two years, Holden will age out of that program. And while I have always been a huge supporter of public school education, I can tell you with absolute certainty that (at this very moment), Holden is not a candidate for the public school system. Were Holden to be placed into the public school system, all resources and hands would be spent simply "containing" and "managing" him. There would be no time or energy left for meeting any educational goals. The only current option in my mind is to keep him at the ABC School beyond the Early Intervention Program. And to the best of my understanding, that will cost somewhere between $40-$60K, a year. Being a single mom, I have to assume that that cost will fall solely on me. Knowing that my previous career in advertising/marketing isn't an option for me as a single mom (due to the demanding schedule), I am currently in the process of researching degrees that I can pursue over the next year and a half that would allow me to pay for Holden to continue receiving services at the ABC School and still be home with my kids at the end of the day... still knowing that I would need to continue my ebay store in my "downtime" to enable us to meet our normal living expenses. My only other option is to move to one of the 37 other states that have already implemented Autism Insurance Reform, but that isn't really even an option, as it would require, yet another, lengthy legal battle in order for us to move out of state. However, if Autism Insurance Reform is passed in North Carolina (as it stands), up to $36K of Holden's therapy would be covered by insurance!!!! THAT IS HUGE!!! And, THAT, my friends is why I am BEGGING for your support. So, friends, I apologize for over-sharing, but I hope you can see why we are so desperate for this Insurance Reform, and why your support means so very much to us! Please make those phone calls and please help us pass Autism Insurance Reform in North Carolina! Thank you so much!!!

Holden did his very best to make his voice heard... can you please do the same??

 Holden did his very best to make his voice heard during today's session. He laughed, he cried, he threw his snack cup full of cheerios over the railing down onto the Senate floor, then later threw his straw and his juice box onto the Senate floor. Thankfully, those Senators laughed!  My sweet boy did everything he could think of to make our Senators pay attention to him, but Holden can't talk. And he needs for YOU to be his voice. Please make a phone call for Holden today. Even if you've already called, call again! Emails are great, too!

Helicopter Parent

An open letter to my one-time dear friend, current acquaintance who called me a "helicopter mom":
(and for those of you unfamiliar with the term: "A helicopter parent is a parent who pays extremely close attention to a child's or children's experiences and problems, particularly at educational institutions. Helicopter parents are so named because, like helicopters, they hover overhead".)
you were at the party with your husband and your only child, an infant. i was at the same party, as a single mom, with my very sassy 1 year old and my very strong-willed 2.5 year old. that very same strong-willed 2.5 year old also just so happens to have autism.
autism or no autism, i dare say that many moms wouldn't try to take a 1 year old and a 2.5 year old to a party and keep up with them on their own. of course, some moms would... and i am one of those moms. i hope you will be, too! & if you are... i promise not to judge you if you don't have much time for conversation.
i just want you to know... there is so much you DON'T know!
you don't know what it is like to keep up with my (now) 3.5 year old son, who has autism. you don't know that children with autism have a propensity to wander. you don't' know that if he wanders and i call his name, he isn't going to respond. you don't know that when these children wander, they have an affinity towards water. you don't know the statistics that show how many children with autism wander, find their way to water, and are then found dead. do you even know that there was a lake just beyond the treeline of the party we were at? of course not, because you don't HAVE to know that! you don't know that if he is watching TV and gets overly excited, he might throw his sippy cup at the TV and in that split second, ruin a $3,000 plasma TV. i know this because it has happened before. you don't know that he can't communicate and the frustration that causes for him. you don't know that that frustration to express his wants, needs, hurts and fears, can cause him to sometimes unexpectedly lash out and grab another child's face... maybe even your own child's face.
so yes, i hover.
i understand that you can't possibly understand all of these things because you have a NT child. in fact, you don't even know what a NT child is. A NT child is a neurotypical child. Your child. And because you only have a neurotypical child, you have never been exposed to that terminology.
So... YES, maybe I am a helicopter mom. In fact, there is no maybe to it. I AM a helicopter mom. But I am that mom because that is what my child needs me to be.
i understand that we haven't spoken in years, i understand that there is much you don't know about my life, i understand that there is much you don't understand about my amazing son. but, old friend, ASK. don't judge. don't assume. just ASK!
you're right, i AM a helicopter parent. but, i am still the same person i always was. and i assure you, i would LOVE to be kicked back on the sofa, sipping a glass of champagne, lost in conversation with great friends, and let my kids run off and play with other children on their own. but i can't. that is not my life. it isn't that i CHOOSE to be a helicopter mom. that role was chosen for me. i would so very much appreciate your understanding and support, even your questions, but not your judgement.

Happy Birthday to you, my sweet, precious "2"!!!

Pictures will have to wait, but I just have to tell you all exactly how TWO YEAR OLD HARPER celebrated today... we got mommy / daughter pedicures (her first!), followed by a stop at Trader Joe's to pick up cupcakes (which also included a sample, a sucker, stickers and a courtesy bouquet of yellow tulips... thank you Trader Joe's!), a stop at Party City for a "present" (i.e. Harper got to choose a 25 cent party favor for herself and brother while I picked up cupcake toppers for her party), lunch at Tripps (definitely not mommy's favorite, but we chose a place where they would sing "Happy Birthday"... and she loved it!), followed by... three rides on the carousel, some fun time on the lawn mower at the mall, a cupcake at Gigi's, joining brother's classroom for art time and snack time and then meeting Samuel at the playground for some more playtime. AND... this TWO YEAR OLD just fell asleep in her toddler bed for the very first time!!! All in ONE day! I am very, very afraid!!  Happy Birthday, sweet girl. PLEASE SLEEP WELL TONIGHT!!!  :)



Pay it forward!



Over the past year and a half, I have been so amazed by how many genuinely wonderful people there are in this world, and how many people truly practice random acts of kindness... I am the blessed, grateful, proud mama of a 3.5 year old son with autism. That can be challenging. I am also the mama of a VERY strong-willed 2 year old daughter. That, too, can be challenging. And I am a single mom. That part... I'm okay with!  But, at times, again... that, too, can be challenging, simply because of the physical limitation of only having two hands!  My kids love to be out and about, so out and about we are. We love our adventures and more often than not, we have an amazing time! But there are also times when I find myself without enough hands. Holden might be running away at the exact same time that Harper is screaming "Mommy, HOLD YOU!!!!". And, physically... I CAN do it. (It is challenging, but I CAN do it). But I have encountered so many people who have been not only a blessing, but an inspiration to me. Strangers at the grocery store who offer to hold Harper while I calm Holden. Friends that I just met (that very same day) who automatically start feeding Harper at a birthday party while I'm calming Holden outside the room. Lifelong friends who pick up my sweet girl so I can chase down my little man on the loose. And I just want to say "thank you!" You truly inspire me to be a better person. And... those rare days when I find myself child-free, you better believe, I am looking for opportunities to pay it forward!! 

Autism Insurance Reform in North Carolina




Autism Insurance Reform in North Carolina

In July 2014, it occurred to me that although Holden and I had visited the Legislative Offices in Raleigh many times, Harper had never joined us.  The reason was quite straight forward... taking one child office to office was challenging enough... two children?!?!  Who would do that!!  ;)  But then it occurred to me that while it might be more "manageable" to just take Holden with me as we visited Senator after Senator, Legislator after Legislator, I was doing an injustice to the cause.  Yes, I might be showing these elected officials what it is like to walk around with a 3 year old with autism, but let's face it... when am I ever walking around with "just one child".  So... in an effort to put a real face to what our day looks like, I decided to do what I do best (and what makes me happiest!) and bring both babies to Raleigh! 


I won't lie.. while I often carry one on my back and carry the other in my arms, I was only used to doing that for a festival, an outing or simply accomplishing chores around the house... over the course of that entire first day, where I was wearing one or the other on my back and more often than not carrying the other in my arms, I was sweating profusely, my hips were killing me, I was wondering how my legs were still moving because I felt like they were losing feeling... and I couldn't find a darn thing in what I thought was my "well packed bag"!  But, I hope that we were true to our story.  At that time, that is truly what it looked like if we ventured out and about as a family of three... and that includes the times that Holden scratched my face and pulled my hair.  Here he is showing his frustration towards Lorri Unumb.
This is autism folks, and this is why we need Early Intervention Services!!!!

Autism Insurance Reform in North Carolina


One last stop on our way out of Raleigh... the big water table!

Autism Insurance Reform in North Carolina

Holden & I are heading back to Raleigh on Tuesday to show our continued support for autism insurance reform in North Carolina. And, right now, I just feel overcome with gratitude for all of the support that our children are receiving. I am so grateful for the continued efforts from Autism Speaks and from the ABC School. Of course, we as parents, would go to the ends of the earth for our kids, but to also realize that there are others who love our children so very much that they would work so tirelessly for their best interests... I truly can't even put my gratitude into words. thank you! you inspire me to be the best mom i can be & i am forever indebted to you!


Lord, if it's not Your Will...


On the road to Autism Insurance Reform

On the Road to Autism Insurance Reform - NC Stories - Holden's Story
Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform."
The best part of my job is meeting amazing autism families all around the country.  During my time in North Carolina recently, I have heard so many inspirational stories from all corners of the state, and I want to share them during these last few weeks of the legislative session.  Each day, I will share a post written by a North Carolina family who is working to help pass autism insurance reform this year.  Some of these families desperately need coverage for their own child; some of them are working solely for the benefit of others.  These people inspire me every single day.

Meet Holden's Family

My name is Shea Capps Brooks, and I am writing in support of the North Carolina autism insurance bill.  I am intimately aware of the importance of this legislation, as I am the mother of a child with autism. His name is Holden, and he is an active, adorable, three-year-old. Holden loves to run, climb, and play outside and in water. He is currently non-verbal and experiences a great deal of frustration stemming from his inability to communicate his wants and needs. He loves to explore new places, loves live music and marching bands, and enjoys outdoor festivals, but has to be closely monitored in social settings as his frustration can sometimes lead him to scratch or bite.

My son is perfect in every way, and I am proud to call him a mama's boy. I am his best friend, his confidant, his biggest advocate and his greatest fan. My heart aches to provide him with the tools he needs to communicate and to ease the frustration that he encounters as he strives to perform daily tasks, tasks that come so easily for the rest of us that we take them for granted.

 

In many ways, parents of children with ASD (Autism Spectrum Disorder) are no different from other parents. We want exactly the same things for our children that all parents want. We want them to be safe and healthy and happy. We want them to live their lives capably and reach their fullest potential. We want their highest hopes realized, their fondest wishes fulfilled. The medical needs of our children, the path to their success and well-being, are just different.
All parents have a responsibility to seek out and provide the best possible medical care for their children. For our children, sometimes that medical care is not found in an IV or a prescription bottle. It is found in the skill of trained therapists. There is no debate as to whether the therapy being considered for coverage in this bill is an effective one. I am asking that my son, and all others with autism, be allowed the same access to the medical care they need as those who need antibiotics, casts, or chemotherapy.
My son tries every day to do the things he needs to do. He struggles to live in a world that often overwhelms him. He wants so badly to communicate. At the moment, he's doing everything his brain will allow him to do, but he has a physiological, brain-based disorder. And while we know that it is not curable, there are effective treatments. All I ask is that the treatment be accessible.

On behalf of my precious son and all others in our state with ASD, I urge the North Carolina Senate to pass this critically important bill.
- See more at: http://www.autismspeaks.org/blog/2014/07/06/road-autism-insurance-reform-%E2%80%93-nc-stories-%E2%80%93-brooks?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+AutismSpeaksBlog+%28Autism+Speaks+%7C+Official+Blog%29#sthash.zML8Bs95.dpuf

You might be the parent of a child with autism...

You might be the parent of a child with autism if you set up driveway water play with the primary purpose of bathing your child!  ‪#‎MissionAccomplished #AutismAwareness
I have been so amazed by Holden's play skills today. We have discovered that he really loves his cousins' "Barbie" car. He was playing with it so appropriately, pushing it all the way across the room. So, I added two "Happy Family" dolls to the driver's seat and the passenger's seat. He wasn't at all interested in having a passenger, but he actually kept the driver and incorporated him into his play. He would put the driver in the car (in the driver's seat, nonetheless!), close the door and then push the car all the way across the room. He did this over and over and over again (taking the driver out, putting him back in, closing the door, and "driving" the car). Granted, he also threw a potted plant in the floor because it was in his way, but I was too excited over this huge development in play skills to be upset by that!!! Happy 4th of July!!! 

Dinner is served...

I don't claim to be the best cook in the world, but I do make sure that my babies have nutritious and (what I consider to be) yummy meals. But it appears that Holden was not a fan of what I made for dinner tonight. As I was putting dinner on the table, Holden walked over to the fridge, pulled out his salami, his bread and his mayo and brought them both back to the table. He may not have used words to communicate with me, but his message was loud and clear. He was NOT eating what I cooked for dinner tonight. So, he thoroughly enjoyed his deconstructed salami and tomato sandwich! 

Harper says...

"I need more bean greens".

Bean greens sound so much yummier than green beans!  :)

Autism Insurance Reform in North Carolina

My little musician is Raleigh bound!


I've been working hard this morning! Wish me luck! 


Holden decided that he would rather be the greeter just outside the entrance... where he can watch movies on his iPad! 


Thursday, October 16, 2014

Welcome to Holland

WELCOME TO HOLLAND

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place.

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Co'me Holden! Holden, co'me!

Holden & Harper were entertaining themselves fairly well tonight, so I was slightly distracted (in the same room) packaging and shipping ebay purchases, and I hear: (Harper): "co'me Holden! Holden, co'me! co'me Holden! Holden, co'me!" (she was trying to say "come here, Holden! Holden, come here!") I look up to see Harper chasing Holden around the room with a tube of lotrimin. She had taken the top off and was apparently ready to administer his "anti-itch medicine" to him... she just had the wrong thing! (In her defense, the lotrimin tube does look quite similar to his prescription tube!) Luckily... he was running from her! I explained to her that mommy is the only one that puts medicine on Holden. She nodded like she understood, and then a few seconds later I hear, "co'me Holden! Holden, co'me! co'me Holden! Holden, co'me!" I turn around and she was chasing him around with the desitin, cap already off. What a sweet little mama (who didn't have her listening ears on!) and what a very understanding big brother!  Apparently the diaper station needs to be on lock-down now, too, not just the medicine cabinet!