Eggs!

Ashton has this new obsession with watching You Tube videos of people opening eggs with toys inside.

For example:

Apparently this is a "thing" people do.  This particular video has 2,411,389 views!  Seriously?  I don't get it, but he absolutely loves these videos so much he acts them out. hehe

Has anyone else heard of this?

Our Story!

Thank You!

I am still in shock and awe from the events of today.  We got the amazing opportunity to meet some truly fantastic individuals and are so utterly and thoroughly thankful!  Our fence is up!  Not only that but they built the kids a swing set, repaired our deck, sprayed our yard for bugs and so much more. There is far too much to be thankful for today! =)

I would first and foremost I would like the thank God, I know so cliche...right?!  Seriously though, with Him nothing is impossible and anything is possible!  His master plan orchestrated all of this!  So...Thank you very much for holding Ashton in your hand and for always placing your strongest and quickest angels around him. Thank you for touching hearts and allowing all of this to work out perfectly.  Thank you for giving all those who helped today the strength to do so!  Thank you for loving Ashton even more than I do (which is more than I could even express).  Thank you for everything!

Next up would have to be Jessica Toney!  From the time we initially spoke on the phone I felt like we had a special connection.  You truly are an amazing woman whose compassion, sacrifice, hard-work, dedication and pure awesomeness set you apart.  You surprised me at nearly every turn through this process, exceeding my hopes and dreams for this project.  I am still in complete awe.  You have taught me so much!  Thank you, from the bottom of my heart....THANK YOU!  PS. I am so glad that Ashton gave you a hug!  If anyone deserved that, it was YOU!

To the Home Depot team leaders and volunteers, you guys are utterly and truly amazing!  To take time out of your busy schedules to come and help do all that you did today means so much to me and my family! Your skill and hard-work made all the difference today!  Dan, thank you for your GREAT idea to install the fence panels the way we did!  That was perfect!  Lionel, Thank you for the swing set idea!  I know you put your heart into it, we appreciate that so much!  As you saw, the kids LOVE it!  I could go on and on about each and every single one of you.  Thank you so much for everything.  You have really touched our hearts and have created memories that will be with us forever!  Today we laughed and had a great time and hope that you did too, you are truly an amazing group of people.  I can honestly say that it was an absolute pleasure to meet each and every single one of you.  Ashland Home Depot is lucky to have such an amazing leader and team!  Thank you, thank you, thank you!

Rachel Reynolds, thank you so much for all you did to help with the grant application and paperwork.  You were a very important part of making this happen and we really truly appreciate all you did in this entire arduous process. You have done an amazing job with the school since you took over and this just goes to show that you are more than willing to go above and beyond and that means more to me than you will ever know!  Thank you, Rachel!

To the family and friends that came and helped today, Thank you!  Your support and help means so much!  We are really lucky to have such amazing family and friends.  I know you each love Ashton (and Kayleigh) and it warms my heart to see that love in the hard work that you did today.  We love you each so much, THANK YOU!

Thank you to those who were unable to be there but have been there through prayer and support during the last several months, you know who you are!  A special thank you to Sheri, I could tell that this was something close to your heart.  Thank you for that, it really means a lot!

Please stay tuned for pictures! Here is a teaser...

A Fence For Ashton

Ashton absolutely loves being outside.  Due to the location of our home (surrounded by woods, lakes and curvy roads), the only time he is outside in nature is going to and from the car when we go places - which isn't very often, to be honest.  I hate that he can't go outside to play and explore like other kids.  Ashton elopes, just like 50% of other kids on the autism spectrum.  What that basically means for him, is that he will wander (run) away from a safe environment without caution or awareness of danger.  He has pulled away from us and ran down the middle of the road, he has gotten out of school and our home on multiple occasions once he has timed and planned each perfect escape.  He has walked into a random house, nearly been hit by a car and more.  The danger of wandering is very scary which is why we limit going places and being outside.  He does have a fenced in yard and playground at school, which he ADORES.  The playground is so motivating for him that it is one of the first things he verbally asked for when he began to talk.  "Playground" became "I want playground" which evolved into "Follow me to the playground, please" which is what he said to his daddy last week during the open house at Kayleigh's school.

In May of this year, Jon and I began actively perusing fencing our yard to give Ashton the opportunity to play outside.  We had just received our tax refund and thought it would be the perfect time.  We began collecting bids from fencing companies and people we know in the construction business.  The first bid we received was from a guy that I knew from working in property management, he would be doing it on the side so I thought it would be affordable.  I was shocked when the estimate came back at $4,500.  The other two bids we got were even more than that!  YIKES! 

Not only was the $4,500 way more that what we thought it would be but it was more than we had.  We are not monetarily wealthy by any means, raising children with special needs is a very expensive task and siphons away any and all "extra" money!  We ended up again experiencing this the first week of June when Ashton was hospitalized for a few days again due to his "wonderful" gastrointestinal issues. Away went the cushion of "extra funds".

With all that being said, to be perfectly honest, I am one of those people who do for themselves and find it extremely hard to ask for or accept help even when I really need it.  When a friend suggested asking for donations it was really hard for me to even think of it as an option but the way that she phrased it made me really think.  She said "Allow people to directly help a child with Autism".  All of a sudden a realization came to me that people love to help, people get joy from helping.  I have been stealing joy by not giving people the opportunity to help in a situation like this where my own pride is keeping Ashton from playing outside.  MY OWN PRIDE!  That really sunk in.  OK God, I get it! 

I set up a website for donations, Facebook and Twitter pages for awareness.  I also got some great ideas for allowing local businesses to help.  I thought about Home Depot and the role they played in the recent "Light It Up Blue"campaign for Autism Awareness Month in April.  I decided to email the local Home Depot.  I called and got the email address for the manager, Jessica.  The following is the email I sent:

Hi Jessica, 

Good evening, I was told you are the perfect person I need to speak with.  I understand that Home Depot is known for its charitable work and volunteer programs within the community.  I am also aware that your company was very involved with the “Light It Up Blue” campaign with Autism Speaks in April of this year which brings me to why I am contacting you. 

To make a long story short my 6 year old son, Ashton, has autism and exhibits severe eloping behaviors.  A fenced yard would mean the world to our family and to Ashton.  Currently he is unable to play outside like other children his age (unless he is at school or at my mom’s house, both areas are fenced).  At any moment no matter how “supervised” he is, he could bolt (and does) and from experience it takes every ounce of strength from my 6ft 2in husband to catch up to him if he gets away.  Our house is locked down like Fort Knox and we also participate in the project lifesaver program to dull the constant worry although it does not take the place of having a safe place for my son to play.  If we are in a situation outside of the home, he must hold an adults hand which leaves very little freedom for my awesome boy to develop and grow by playing outside and develop his sense of self.  My husband and I are trying to raise money to purchase a fence for our backyard.  

Please feel free to visit www.afenceforashton.com for more information about my son, the importance of a fence and our unique situation.  Please let me know if this is something that Home Depot would be interested in getting involved with. 

Thank you so much for your time.

I was honestly not really expecting much. I was hoping for maybe a discount on materials or something, but the response I received was awe inspiring I got an email back that evening stating that she would look into what they were able to do and that Ashton touched her heart. She told me she would contact me in about a week. She called me a week later and told me that not only were they going to be completely covering the costs of the materials, but were going to be recruiting volunteers from three Home Depot locations to help build the fence. WHAT? Seriously? How awesome is that? The Home Depot team came out a few weeks later to meet Ashton and take some measurements. They brought him his very own Home Depot apron!

I am sorry but if this entire situation didn't teach me something, I don't know what will.  This whole process has been extremely humbling and amazing!  There has been some red tape and planning but the official date of the fence build is this Friday September 13, 2013!  We are extremely excited!  Stay tuned for pictures and updates!

P.S. If you need anything for your own home improvement projects, check Home Depot first!  They have our continued loyalty and I hope they have yours!  They really do care!

What Is The Worst Phone Call You Have Received?

The Watcher - Painting by Thomas Blackshear II

I feel that I am finally able to openly discuss the alarming event that occurred the fall of this past school year. Some of the recent frustrations that I am facing are a direct result of this and to give a better background I am now going to put it all out there.

At around 3:30pm Wednesday, September 28, 2011, I received a phone call from the school where Ashton attended. As a parent, anytime the caller ID reads “THE SCHOOL”, I think we innately freeze and our heart stops beating. I personally think that biological response triples for those of us who parent children with special needs.

The following is part of the reason why....

“Good Afternoon Mrs. Parker, I am calling to inform you that Ashton got out of the school today.” “Please don't worry, he is safe now, but just wanted to call and let you know what happened.” The “downplaying” of the event promptly followed.

Once I was able to get the facts this is what occurred...

At lunch (around 10:30-11:00am), Ashton's 1:1 aide got up from the lunch table to fix his oatmeal, once she was away from him, Ashton promptly got up from the lunch table and proceeded to run through the cafeteria, down the small rear hall and out the side doors leading outside. Once he was outside the school he proceeded down the middle of the side road in front of the school towards the major highway/byway the school resides on (a major roadway where cars are know to travel the upwards of 70 miles per hour-speed limit of 55). Thankfully when he was about 15-20 feet from the highway a woman driving towards Ashton stopped her minivan, got out and intercepted him. She then led him back to the school.

What isn't said here is that I have recording after recording of IEP meetings (If you are not sure what an IEP is read here) prior to this event detailing his known elopement behavior. Especially once I knew that this school year would start with a brand new teacher, a brand new principal and several new aides working within the classroom I made sure that I over explained during several IEP meetings WHY we have a 1:1 written in the IEP and the importance of someone being within arms reach of Ashton in order to prevent something like that from happening.

There are many horrible, terrible, devastating outcomes that I am sure were rushing through your mind as  you read the details of the event.  I am beyond thankful that Ashton's angels were working overtime that day and that nothing horrible happened. It did not however, leave the school void of responsibility. After multiple meetings it was finally decided that it was appropriate for him to attend a private day school for children with Autism at the county's expense. It was promised by the new school, that he would have a 1:1 aide with him at all times and thankfully we haven't had any successful attempts at elopement since he started at his new school.

I am in shock at how well he has done and how far he has come in the last several months since this placement started. To find an environment where you see tremendous growth in your child is priceless. It was like a huge burden was lifted off of my shoulders, I felt like I didn't have to fight so hard anymore. I felt like all my dreams had come true....No more IEP meetings where you leave feeling like you want to crawl in a hole and die, defeated. NO MORE!!  These people really care!

On to recent frustrations.....

On the last day of school June 15, 2012 I received a lovely letter stating that due to the fact that ownership of the school had changed hands and that the curriculum was changing they were not going to be able to provide a 1:1 student/aide ratio any longer.

The event that occurred in September came rushing back full force. After speaking with the representative from the school that following Monday it was ultimately determined that NO ONE was going to receive a 1:1 aide and there was no way around that. They understood if I felt that placement elsewhere was appropriate for him. A flood of emotions hit me in that moment and I again felt defeated. What happened to not having to fight anymore? What happened to thinking that “these people REALLY have my sons best interest at heart”. I felt like an environment that demonstrated without question to help him was being pulled out from under him like a deceitful rug. After I said somethings that I now regret, I sat in my car and cried. I cried one of those ugly cries...you know the ones I am talking about. Make up running, sobbing with the ugliest possible contortion to your face...Yeah, that’s the one!

After a head slitting headache and the drive home. I realized I can not do this on my own anymore. Jon has never really been involved in the kids schooling. That has been completely and utterly on my shoulders alone. I attend IEP meetings alone, I go through IEP's alone, I research education laws on my own, I draft/edit IEP goals on my own....I don't care if he has no clue what is going on, I need support. We talked.

After I vented to Jon, prayed and slept, I felt a little more refreshed the next day. I called the representative back and started with an apology for my emotional response and asked if we could call a meeting to discuss options. We are talking about developing a safety plan for Ashton that meets his needs to prevent elopement without a 1:1.

This is my prayer..please join with me!

Heavenly Father, thank you so much for continually keeping Ashton safe and getting him in this program where he has shown so much growth. I know that you have a plan for this situation and that you ALWAYS have his best interests in mind. Please help us develop a plan that works. Please give guidance to the teachers and aides that work with Ashton. I pray that he continues to grow and learn in this new program. Above all, please continue to keep him safe. Place your strongest and fastest angels around him. In Jesus name, AMEN!

What Autism Is To Me...

Today, April 2, is World Autism Awareness Day the launch of Autism Awareness Month.  Awareness has come a long way in the last few years which has led to a better general knowledge of the disorder; however, I feel that awareness is merely not enough.  We really and truly need to take the next step and push for acceptance and genuine understanding of those with autism.  To do my part, I am going to try and explain what autism is to me. 

Autism to me is a blessing and a continual challenge.  Autism is a rainbow of abilities and strengths; it’s a kaleidoscope of difficulties and weaknesses.  Autism does not define us but has become and forever will be an intricate part of my family and life. 

Autism is every day, night, week, month and year.  It is with us during meal times when he will only eat from a very strict list of foods.  It is with us when noises that I don’t even hear cause him to cover his ears in distress.  It is with us when he craves sensory input by crashing, tumbling, flipping and jumping.  It is with us when he smiles and laughs for no apparent reason; I love those times.  It’s his fascination with the intricacies of things; he takes in each piece, each part…watching and observing.  It’s the exaggeration of smell, sights, sounds, textures and tastes.  It’s hand flapping and spinning.  It’s taking off running into danger without understanding.  It’s temper tantrums, throwing things; it’s his frustration.  It’s sleepless nights.  It’s the family holiday traditions that I have had to let die.  Autism is constant adjustment and accommodation.       

Autism is routine, everything is carefully planned and executed.  Familiarity is a teasing presence.  Newness spawns chaos and unease. 

Autism is accepting that my son isn’t and won’t be like other boys his age.  He probably won’t play on sports teams or go to sleep overs.  He may or may not go to college or get married or give me grandchildren…and that’s ok (most days).  I just want him to be happy. 

Autism is unconditional never-ending love, a true bond between a parent and child unlike any other.  It’s knowing that your child loves you more than anything even when he can’t yet verbally express that love.

Autism is not taking ANYTHING for granted.  Every single reached milestone and skill is cause for great celebration.   It’s seeing your child make great progress and then witness a regression.  Autism is trying to stay focused on all the positives.

Autism is a rollercoaster of emotions.  It’s an ongoing loop of smiles and struggles, laughter and tears.  It’s fearlessness and helplessness; joyfulness and sadness; loneliness and companionship.

Autism is a battle.  It’s fighting with school administration to get appropriate scientifically based instruction for your child.  It’s struggling to get him the speech, occupational and physical therapy he needs.  It’s being the “squeaky wheel”.   

Autism is worry, the nagging worry of will happen to my little guy when my husband and I can no longer be here to care for him.  It’s all of the “what ifs”, the uncertainties of the future.  Fear of bullying when he goes to school.  Worry about jail when I beat the crap out of said bully(s).   

Last but not least, autism is a teacher.  I have learned so much about my son, myself and those around me.  Autism has revealed to me the dire need for acceptance of those with differences; the profound necessity for parents to teach their children to embrace differences and not judge others.  I once frowned upon parents whose children misbehaved in public; Instead of assuming bad parenting, I now always assume there is some underlying circumstance occurring.  Who am I to judge?  I understand first-hand what it is like to be in public for a sensory overloaded melt down with my son.  I understand the stares and the mumbling under ones breath, the rolling of the eyes and blatantly rude and hateful statements directed at me and my son (THAT HE HEARS TOO).  Autism is not judging a book by its cover.  Being different is just that, different…not negative or less!

In closing, I urge you to not only be aware of what autism is but transcend mere knowledge into understanding and acceptance.  Autism is here and it’s not going anywhere.   

First Love?

Ashton rides in a county car to and from school, instead of a typical bus.  There are two to three other children that ride in the vehicle as well.  Beth, our driver, told me the cutest story that I have to share. 

Yesterday afternoon Ashton’s aide fastened him into his car seat; a little later the 4 year old little girl that rides in the car seat next to him was buckled in.  As soon as she was in her seat, Ashton took her hand, held it with his and lifted it to block the sunlight that was coming into the car shining brightly into his eyes.  He then let her hand go and she put it back down in her lap.  A few seconds later, he looked at her and took her hand again, this time just holding it in his. They sat there holding hands all the way home.  How cute is that?!

Thanks Mrs. Beth, for sharing this story with me as well as being an awesome driver!!  We love you!

Long Time, No See!

Ok, so I have been MIA for a little while.  I really want to keep this going so let’s play some “catch up”.

Updates:

Kayleigh - It’s really amazing how far this little girl has come in the last couple of months.  She is now singing her alphabet (not 100% accurate, but it’s a working progress); She is requesting a lot now even without verbal prompts, which is awesome (drink, snack, she will even request kisses); her vocabulary is steadily growing; She can name and make the sound for about 20 animals; She has finally started correctly identifying body parts (eyes, nose, mouth, hair, ears, tummy, foot); She is labeling things like crazy.  As I am typing this I hear her in her room saying “eyes, nose, mouth” to which I am guessing she is identifying body parts on one of her stuffed animals, which she loves to do (all the time).  It’s really too cute to watch.  Maybe I will get a video and put it on here soon.

I would like to also note for the record, that she said “I love you” to me before bed this week.  I can’t describe how that felt.  I know both of my babies love me beyond any doubt in the world, but hearing those three little words did something to me in that moment.  Did I cry?  Do I even have to answer that one? haha

Ashton – My little guy is doing his thing.  Last night when he was done with his dinner, he said “all done” and did the sign!!!  Did I cry..omg YES, I did.  He amazes me every single day, he is a trooper for sure.  During a recent conference with Ashton’s teacher I was told that in a 30 minute session they have recorded as many as 20 random words from him.  That just blows my mind.  He is loving singing and will request for you to sing his favorite song to him by saying “winkle winkle”, which of course is Twinkle, Twinkle Little Star.  He even sings along.  I catch him singing and saying things all the time but they are ALWAYS on his terms. Hehe 

I am really going to try and make an effort to keep this blogging thing up.  Not only is it nice to look back on the progress of the kids, but it’s just nice to write sometimes. 

I did notice that I have some new followers, welcome.  Hope you are enjoying it here. =)

What Ashton CAN do.

It’s easy to focus on what your child can’t do when you are faced with the day to day challenges of Autism.  Today I want to celebrate what Ashton CAN do and how far he has come since he started school last January.

Ashton can sit during meals with minimal supervision.  He eats with a fork and spoon successfully.   He can pull up his pants with a verbal prompt and assist with parts of his dressing routine.  He brushes his teeth with minimal assistance.  He gives “high fives”.  He will walk while holding your hand with minimal resistance, which has helped tremendously with his darting and running.  He can follow simple one step routine directions; such as throwing things in the trash and hanging up his book bag.   He can throw, kick and catch a ball.  He imitates actions/movements to songs.  He is matching the names of his classmates to their pictures.   He participates and takes turns in circle time with minimal support.  He is starting to say some spontaneous words and will echoic a few.  Every night before bed he will say “night, night”   as a cue for me to open his bedroom door for bedtime.  He is playing with his toys in a more appropriate way and has even acquired some pretend play skills.  He will actually let me read to him now.  He is interested in the pictures in books and is beginning to understand that the words on the page have meaning.  He will give hugs and kisses with a verbal prompt.  He also now enjoys coloring and drawing.  He can rote count from 1-20 and can identify some numbers.  He can say his alphabet and can identify some letters and letter sounds.  He knows some shapes and colors. 

It’s really difficult to establish a baseline for all Ashton knows and has learned because once he masters something he gets bored with it.  I am extremely proud of my little guy and how much he has learned, overcome, grown and matured in these last 12 months.  I am excited to see what this next year brings; with God all things are possible.    

Silent Prayers

Startled by a sound I assumed was coming from Ashton’s bedroom, I opened his door tonight expecting to see him still awake jumping on his bed or kicking the wall (which is not uncommon).  However, what I found was a sleeping angel.    His breathing was rhythmic and deep, his still body relaxed and calm.  After quite some time had passed, I realized I was just standing there watching my perfect little boy sleep.  I remained there for quite a while, just watching, observing, and enjoying the peace and stillness.  Silent prayers of praise, thanksgiving and hopefulness soon began rising from that tranquil room. 
 
There is something so touching about watching children sleep.  Since the day I brought mine home, I have always found joy in the simplicity of watching them peacefully sleep. 

Too often I find myself caught up in the routine of life, the stresses of the day to day and after a Monday that felt like nothing could go right, my day ends reflecting on the gifts that God has given me.  These moments may not come as often as they should and sometimes I wonder if I was the right choice but I am truly grateful beyond words that God hand-picked me to be Ashton’s (and Kayleigh's) mommy.

Baby Ashton

Ashton the Movie Star!!

January 5th, 2010 Ashton started in an Applied Behavior Analysis (ABA) Autism Class with the local school system.  The amazing strides Ashton has made in these last 12 months have been incredible and encouraging.  My biggest fear when I found out that Ashton had autism was not being able to provide everything he needed to be as successful as possible later in life.  I kept reading repetitively how important early intervention is and how critical these first 5 years are in the lives of children with autism as well as how effective ABA can be for these kids.  I am ecstatic to say that I feel as comfortable as I possibly can with the program that he is involved in.  More often than not, you find that school systems want to offer the bare minimum for our kids or offer programs for kids with autism that are just thrown together to "shut the parents up".  I honestly have to give credit to the county for seeing the need to have a program such as this for these kids.  By contracting Adam, a Board Certified Behavior Analyst (BCBA) with Commonwealth Autism, the county shows they want to do things the right way and since the program’s inception it has grown to become something revolutionary.

This pilot program in unlike any other and I cannot express how blessed we are for being a part of it.  The love and dedication the teachers, aides and other professionals have for these children is heartwarming.  The program incorporates ABA in every aspect of the day.  Their daily schedules not only include discrete trial sessions but also include activities such as circle time, center time and library.  They use incidental teaching throughout the entire day to take advantage of every single learning opportunity.  

Commonwealth Autism has been an imperative part of this program and has helped mold and shape it to what it is now.   The following video was recently added to the company’s website and I am excited to say that Ashton is in quite a bit of the footage.  The footage used was recorded the spring of last year.  Enjoy!!