Thursday, December 29, 2011

The Santa Clause.....

The Christmas Season these days is much different from the ones of the past. Take decorations for instance... I never imagined having to be so careful deciding what to put out/up based on the likelihood it will be eaten, demolished or cause bodily harm in any way shape or form. The (not so) annual village has been a definite “NO GO” for the last few years (which my mom saw first hand this year after a few gates were ripped from their hinges and placed where they were really meant to go in her bravely displayed village...sorry mom!). Everything from traditions and gathering all the way down to the actual gifts. This year I will proudly say that Ashton actually unwrapped his gifts with minimal assistance. Maybe we can work on the enthusiasm next year? Hehe

On to Santa....

This year was the first year that we braved a Santa visit. I will admit that I was a bit nervous. I hate putting him in situations that overwhelm him but also scenarios that give people more of an opportunity to say something idiotic or downright hateful. First hurdle, the dreaded waiting in line....CHECK, he did amazingly well with minimal resistance and vocalizations. When we got to the front of the line the elf briefed us and was trying to engage the children in conversation. Kayleigh played along pretty well. Ashton just hummed his usual one note tune and looked at the elf briefly as he took the sticker being offered, knowing it would become a later snack. It was then our turn with Santa. We gingerly walked up to Santa. I placed Kayleigh on Santa's lap. She was just going with the flow...”Hi Santa” Kayleigh squeaks. I look over at Ashton as Jon gently lead him up to Santa. “I don't know how he is going to do, Santa” I warn. “Oh he is fine! Sit him up here on Santa's lap” Poor Santa didn't know what he was in for if this encounter didn't go well. Sweet ignorance! However, as Jon placed Ashton on Santa's lap he looked up into Santa's face and said in the sweetest little Ashton voice ever....”OH, OH, OH” It wasn't quite Ho, Ho, Ho....BUT IT WILL DO!!!!!! Of course I freak out...Santa probably thought I lost my mind...”GOOD JOB BUDDY, THAT'S RIGHT...HO, HO, HO!!! SANTA SAYS HO, HO, HO!!! YAY ASHTON” I then backed up with tears pooling in my eyes just in time to get out of the way of the picture they were trying to snap. The photo turned out great, although I am a little bias....you be the judge!!!

Ahhhhh Christmas Time.....Different Not Less!!


Saturday, April 2, 2011

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.   

Thursday, March 10, 2011

I Won't Let Go.

I have always been one to relate to music.  Today I heard the song “I Won’t Let Go” by Rascal Flatts.  I immediately thought of Ashton and this path that we are on together.  This song truly touched my heart today.  As tears trailed slowly down my cheeks, I took this song to heart in two unique ways.
God has given me this amazing gift, a gift that has taught me more than I ever would have thought possible.  God not only sees how much of a blessing and joy Ashton is to me; He also knows my struggles, the pain, the heartache and my incessant worries.  He knows there are very dark days where I feel lost, helpless, hopeless and alone.  This song reminds me that even on the darkest and hardest days, even when I feel so alone…..I’M NOT.  He won’t let go!   
This song is also a declaration from me to Ashton.  Words can’t express how proud I am of my little guy; he works incredibly hard each and every day on things that come so naturally to most other children.  I know we have quite a journey ahead of us but I am here; here to love, support, comfort, encourage, and fight the fight…advocating for him.
I love you, Ashton.  Mommy is so proud of you and how far you have come.  I know some days are so much harder for you than other days.  I know you want so badly to be able to tell me what’s going on, I see it in your eyes.  I know we have some hard days ahead but I just want you to know that I am here.  You’re not alone.  I will stand by you.  I will help you through.  When you’ve done all you can do and you can’t cope; I will dry your eyes.  I promise to fight your fight.  I will hold you tight and I won’t let go!

Thursday, March 3, 2011

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

AshtonMy 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. =)

Saturday, January 29, 2011

What Ashton CAN do.

video

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.    

Wednesday, January 26, 2011

Self-Discipline

Kayleigh has been throwing her food on the floor, when she is finished, for as long as I can remember.  She is two now and is old enough to know better.  We have been working with “all done” and setting her things to the side when she is finished.  When that fails, I have been making her clean up the mess when time permits.  These seemed to have almost put a stop to the food/dish/cup/utensil throwing (for a day or two at a time at least).  She has started again, with a new twist.  Now when she has eaten all that she wants, she will throw everything on the floor and promptly yell a variation of “KAYLEIGH”, “Kayleigh, uh oh”, or my favorite “Kayleigh, NO!”  She will then keep repeating it until I address the situation.  The first time she did it I couldn’t help but laugh.  You know you have been there, when you know the last thing you should be doing is laughing at a disciplinary situation but you can’t help it.  Well yeah, now she does it and smiles looking for her daddy or me to start laughing.  She reminds me a lot of my sister in that regard.  All she had to do was get my mom to laugh when she was in trouble and she was off the hook.  Kayleigh is taking after Aunt Shawna. ;)    
On the positive side, it seems she is finally gaining a sense of self which is one of her areas of delay.  She is loving school.  Her vocabulary is picking up like crazy.  She is addressing her brother by name, which is something new.  It’s so cute to hear her say “Ashton”.  Don’t ask her to say frog though….it totally sounds like another four letter word that begins with the letter “F”.  YIKES!

Thursday, January 20, 2011

Oh The Joys

What do cows, baby birds and flies have in common?  Vomit…I don’t do vomit, plain and simple.  I hate it, despise it…I will do anything in my power not to myself, no matter how sick I feel.  The whole “puke, you will feel better” uhhh, NO … Alka-Seltzer, please?  What’s worse than your own?  Cleaning someone else’s, yes that includes my flesh and blood.  It may sound strange, but I would much rather clean up anything else the kids can possibly come up with.  I do realize that this aversion may stem from the childhood trauma of having to clean up my own puke when I was sick.  My mom couldn’t handle cleaning it but I don’t blame her one bit….now.  Although, it seems as though she can clean the grandkids puke all day long…how fair is that?
Anyway, there are obviously times where I have to put on my “big girl panties” and deal.  Last night was one of those times.  Who doesn’t love 2am puke clean up?  You see, Ashton has a very VERY sensitive gag reflex.   Even the slightest runny nose causes him to have coughing fits which usually result in gagging and vomiting.   FUN STUFF let me tell you.  So, I enter his room at about 2am to find a half asleep little boy practically laying in the results of his latest coughing fit.  He takes me coming into his room as a cue that it’s time to get ready for school.  He groggily exits his room and goes to sit in his chair in the kitchen, patiently waiting for his breakfast.  That at least gave me time to strip his bed and replace his sheets and blankets; then came the sponge bath, clean diaper and clean Pj’s.  On a positive note, I am so glad he was able to fall back asleep fairly quickly once he realized it wasn’t time for school yet.
Dear Vomit,
Good Riddance!  I hope I don’t hear from you again for a very long time.
Up Yours,
Brandi

Monday, January 17, 2011

Me Time!


After a week of non-snowy snow days, broken routines, grumpy children, a traffic ticket and stress all around; I am ready to start my week fresh.  However, I would like to petition that winter be over this year.  Who would I take that up with?  I am done with ice, snow and cancelled school.  Last week made me realize a huge change that I need in my life, STAT! 

Every parent knows how hard it is to get that coveted “time”, when you have kids constantly demanding every last ounce of your time and undivided attention.  By time . . . I’m talking about rejuvenation time, quiet time, alone time, personal time, self-care time . . . “ME-TIME”!  I have recently decided that I need to start having “me-time”.  God, that sounds so selfish.   I hate to admit it, but there are days I don’t even get a freaking shower.  Everyone needs “me-time”, I am not going to mope and get all emotional or feel guilty for not spending every last second with my children.  I am going to accept any offers to watch the children from their father or any other competent caring creature.  Even if I am just sitting alone in my bathtub soaking in the warm bubbly water with a good book, by God I am getting some “me-time”.    

Tuesday, January 11, 2011

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

Friday, January 7, 2011

Today’s Menu: Take it or Leave it!

I would like to start by saying I despise cooking.  It is probably mainly due to the fact that I suck at it and have absolutely no imagination when it pertains to cooking.  My mom always gave the cooking lessons to my sister, who I will be the first to tell you, is an excellent cook just like mom is.  I can, however, follow a simple recipe as well as make routine things that are somewhat edible. 
For last night’s dinner, I tried something that I had never attempted before.   No, it’s not just the fact that I cooked (although surprising)!   Most of you chef type mothers out there will probably just roll your eyes BUT, this is an accomplishment for me.  Granted, it was a meal in a slow cooker…go ahead laugh.  You have to start somewhere, right?  I made vegetable beef stew without a recipe and it was more than edible…it was delicious!!  I still hate cooking, don’t get me wrong…I just don’t suck at it as much as I thought I did.

Thursday, January 6, 2011

I totally should have played the lotto!!

Kayleigh’s latest “thing” is counting…well numbers in general.  I find myself feeling like an extra on the set of Sesame Street at times.  I gave birth to Count Von Count ,“One little bat..ah ah ah”.  My mom calls her the “counting queen”.  She is obsessed and I mean OBSESSED with it..Not only rote counting but just spouting random numbers all day long. 
A couple days ago Kayleigh starts muttering numbers (which has been very typical lately) “one…toooo…fwee…twenyfowe…tirtyseeiix…ninynyeeee“ WHAT?   99…really?  I need to start writing these down, she might be on to something here.  Mega Millions here I come!!
On a more serious note, yesterday morning my baby girl did something I had never seen her do.  She was flipping through one of my magazines on the couch beside me and turned to a page with an advertisement on it.  The price of the item was $24.99 in somewhat large print.  She pointed to the 2 and said…”twooooo” (awe cute, what a cute coincidence) then pointed to the 4…”fowwee” (Is it possible? No way…crazy coincidence) then was the “Nyeeee”.  Ok, this girl might really know her numbers.  I didn’t have the time to really test that, as I had to get her to school.  However, as soon as she woke up from her afternoon nap, I broke out the flash cards.  I will note that these are the same exact flash cards that I use with Ashton, the same cards that she has cried and screamed about every single time I try and use them with her.  This time she not only enjoyed our flash card session, but correctly identified every single number 1-10 in sequence first then out of sequence.  It was not a fluke; she can not only count but can correctly identify numbers 1-10.  I am so proud of my counting queen, Kayleigh Von Count.  =)


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!!



Tuesday, January 4, 2011

I survived...

...Winter Break AND my baby's first day.  Is there a T-shirt that comes with that? ;)
I woke up this morning (after a coffee IV) with a feeling of accomplishment.  Breaks from school, or any routine activity, are always a bit of a challenge for Ashton.  He thrives on routine and when that gets disrupted there is fun for all...and by fun I mean like the joy of sticking a hot poker in my eye, ok maybe not THAT bad.  However, after grabbing my morning cup of coffee and waking up by reading status updates on Facebook (my daily "feeling" of connecting with the adult world)...I see many mothers posting about how much they are going to miss their kids after winter break.  REALLY?  Deep down there has to be some sort of rejoicing, right?  Maybe I am just a bad person but I was happy that my little buddy was going back to school.  While he was eating breakfast all messy haired and groggy eyed, I caught a little smirk on his adorable face.  He was nothing but cooperative this morning and got so excited when it was time to get dressed.  It turns out we were both happy winter break was finally over.
Kayleigh on the other hand was rather ticked off when her beauty sleep got interrupted at 7:15am this morning.  My little princess is used to waking up on her own terms.  She was crabby and didn't want to eat, didn't want to dress...didn't want to do anything!!  However, by the time we had pulled up to the school, she had had time to wake up.  She was all bright eyed, bushy tailed (never really got that analogy..but anyway) and ready for her day when we got out of the car.  I was so proud of my little girl as she took the teacher's hand and walked with her down that long hallway, not even taking a second glance back at me.  I felt the tears building as I rushed out of the school hoping to at least make it to my car before I fell to pieces.  I did thankfully, but lost it at that point.  All the worries rushed to mind as I drove away from the school parking lot.  A special heartfelt "thank you" to the special people who were there for me today.  It really meant a lot.
The couple hours seemed to fly by and before I knew it I was back at the school picking up my little munchkin.  That little punkface walked right past me when I went to hug her as the teacher brought her out of the building.  She had a really good day according to her teacher and for that I am thankful.  So guys, I did it.  I made it through today with only a little self-pity and crying.  HA! 
***Side note..yes its 3am.  I awoke to some heavy snoring and couldn’t for the life of me, fall back asleep (I seriously think I may have some sleeping issues lol).   Off to try and sleep for the last couple possible hours.  Wish me luck!***

Saturday, January 1, 2011

Oxygen please?

OK, so my little Kiwi (Kayleigh) is starting school on Monday.  Her IEP (Individualized Education Plan)meeting was completed on the last possible day before winter break.  For those that are not familiar with an IEP; basically its the written plan designed to help develop specific educational goals for a child with disabilities. It identifies the disability, describes the child’s strengths and areas of need, lists goals the child should reach in a year’s time, includes short-term instructional objectives that represent a series of skills to master or goals to accomplish and identifies programs and services.  What it really is...

Basically you start out thinking that schools and professionals will offer your child everything they possibly can to help him/her succeed.  Unfortunately, that is not the case.  Every parent of special needs children quickly finds out that they are their BEST (and sometimes only) advocate.  We know our kids the best and have to fight for the services we know are "appropriate" for our children.  Even if its not in the "budget" for the school system. 

That being said, I knew what to expect and had everything prepared for her meeting.  They did the eligibility meeting and IEP meeting together and it went with minimal conflict and pain which I was happy about.  I walked out of that meeting feeling good.  Well as good as you can.

With Ashton's birthday "party" and the holidays that followed the meeting, I have had little time to digest the fact that my BABY girl will be starting school on Monday.  Today was the first day that it has really hit me...and boy oh boy did it hit me, like a freaking MAC truck.  My little 23 pound 2 year old is starting preschool.  Did I realize that before I made the decision to go forward with the school system...of course I did.  I spent months and months going over and over it in my head.  Weighing each option, the benefits and consequences.  There have been some naysayers along the way but I am happy with the decision I have made to put Kayleigh in a preschool class.  Afterall, its a couple hours a day, a few days a week and I feel in my heart that she will progress better being around other children.  Even though I feel this is whats best it's still hard to "let go", she has been by my side since she came home from the NICU (minus a few days with grandma over the last 2 years).  Alas, I know I am going to be a freaking mess on Monday.  Hopefully it will be better than when Ashton started school, I called my mom in tears every morning for a week. 

Thanks for reading! 


Happy New Year!!

I am starting my 2011 blogging.  Why on earth would I do that??  Well, I have thought about doing this for some time now as a journal type therapy and have recently found some pretty awesome blogs that have inspired and encouraged me.  If there is a chance I can possibly do that for someone, I am all for it.  Warning, I'm not perfect...my parenting is far from it.  I don't claim to know everything, but I am learning more every single day.  This is my journey; the good and bad, tears and joy.  Welcome to my blog!