Wednesday, August 31, 2011

Jigsaw Puzzle


How long does it take you to complete a jigsaw puzzle?  For me, you can say, my jigsaw puzzle has taken five years.  My puzzle has been very complicated and I didn’t have a box to guide me on what the picture would look like when completed.  I am not the kind of person who likes jigsaw puzzles, but you could say, I feel accomplished in completing my first and know the next one is ready to begin.  I am full of excitement, enthusiasm and optimism.

Five years ago, Alyssa started preschool.  The preschool she went to is situated at the Elementary she attends.  For three years, she attended this preschool, right along with her age appropriate peers.  During this time, I began the process of learning how to advocate for her education.  I did research, went to trainings offered in our state about inclusion, and learned about IDEA (Individuals with Disabilities Education Act).  Those first few years, for me, were much like laying out all the pieces to a jigsaw puzzle… it was totally overwhelming and difficult to know where to begin, not even thinking about the results to come. 

The key to putting a jigsaw puzzle together is to jump in and get started.  The pieces are not numbered; you just keep making attempts to fit the pieces together, until you are able to successfully find pieces that link.  If you put two pieces together and it doesn’t work, you just keep trying.  The final outcome is littered with a feeling of accomplishment and often the picture displayed is incredibly beautiful.

Two years ago, the hardest part of advocating for Alyssa presented itself.  Alyssa was preparing to go into Kindergarten.  The school had a program separate from general education, where Kindergarteners through fifth graders, with significant needs, were placed.  I knew from the beginning of preschool, Alyssa was not going to be in that separate class.  I didn’t know how I was going to make this happen, I just knew, she was meant to be amongst her peers, her future friends, in a regular classroom.  At one point, I was told, the separate class was the “best” place for Alyssa.  Well, let’s just say, I didn’t agree.  (I smiled to myself, as I wrote that last sentence.)

At one point last year, the principal shared his view of the future with our team.  I wrote down what he said because it was so exciting to me and I didn’t want to get his words wrong later.  He shared how much he appreciated our team, as they were all a part of the stepping stones, to a future, where other children, with special learning needs, would be able to follow, in Alyssa’s footsteps.  He shared his enthusiasm and his dedication.  This day felt like the turning point of our puzzle, where we could see the picture coming together.

We had our first meeting of the year just the other day.  Puzzle nearly complete!!!  I am overjoyed.  The goal for the school is to have all the children, who have special needs, be able to participate in their general education classrooms with their age appropriate peers, as much as possible.  I am so thankful for the people who “want” to be a part of the change and a part of making a difference for the kids.  The pave work is being laid, and it’s only a matter of time before the entire world can start believing in children with disabilities... or as I say... children with abilities. 

The final piece to the puzzle was laid over this past weekend.  Alyssa was invited to attend, not one, but two birthday parties, for a couple of her friends.  She had a blast and she is happy.  Her friends rule!  We are blessed and thankful. 

To all those families who advocate for their children… keep believing, trying and loving.  God has a hand in this and He has awesome plans.

Thank you for reading and have a great week.  Angie

Wednesday, August 24, 2011

Surely Typical


As I look at my angel, I see how typical she is, more and more each day.  On the first day of school, she fussed over getting up earlier and starting her day in formation; whereas, during the summer, she was able to go at her own pace.  It was kind of funny.  I went into her room and said, “It’s time to get up sleepy head, time to get ready for school.”  She jerked her covers up and over her head in complete objection!  I smiled and laughed because years ago I remember waking one of my sisters kids for school and getting much of the same reaction.  It took a good solid 10 minutes to coax Alyssa out of her comfy bed and into school clothes.  She continued with her objection by pushing her breakfast away, as if she was telling me, “who could eat this early!” 

Parents ask their children to wait, to ask for something, until they are done on the phone.  Many parents ask their children not to interrupt, as a lesson of waiting, patience and manners.  Funny to me, I am on the phone and Alyssa does the same thing.  She will continue to break into my conversations, until she reaches the outcome she desires.  She didn’t seem hungry before I got on the phone, but from the second I began to talk, she was starving, just starving.  At first, I told her to wait a moment.  I was planning to make the call very quick anyhow.  She gives me a few moments, and then decides she has to take this matter into her own hands.  She uncrosses my legs and pulls me to the fridge.  No phone call is going to stop her desire to eat (or for attention).  This gives me a good giggle.  If anyone has some helpful tips on these types of manner lessons, I am listening!    

When we go to the grocery store, Alyssa is not shy about reaching out for the things she likes.  Why must they put all the gum near the register?  The person who designed check out lines must not have had kids.  Haha!  It takes a lot of self control in the grocery store, even for me!  When I see Alyssa’s eyes light up, I quickly scan to see what she is going for.  Sometimes, I can see what she is showing interest in and initiate giving it to her, so it looks like my idea, of course.  If she demands it, I am not supposed to give in.  If I give it to her before she asks for it, it’s more like a reward for good behavior.  Always need to be one step ahead of these kiddos. 

She opens the fridge a million times a day, loves her bath over cleaning up after herself, and wants to watch television, instead of doing her homework.  She is determined to get her way, loves to see herself in the mirror all dressed up, and if I say “no”, she acts like she can’t hear me.  And my favorite, she gets the giggles and can't stop them once they start.  She is so much like all the kids I know.  It cracks me up when I recognize it because there have been times in the past where I feared she was different, only to be reminded I am wrong.  She communicates differently, but she is nothing less than typical!    

I am excited and happy recognizing who Alyssa is and who she is becoming.  One of the most beautiful parts to all of this, my life is starting to feel more typical too.  For the first time in years, I am seeking employment and excited as could be about gaining it.  Those days of the past are truly in the past.  Alyssa is transforming, changing, learning, growing, healthy, loving, beautiful, spirited, silly and fun.  I am so blessed!

Thank you for reading and have a great week!  Angie

Thursday, August 18, 2011

Rewarding Solutions

Oh yes, you caught me Kristina.  Maybe you are the only one who noticed… haha!  I am a little late in posting.  I watched my friend’s kids Tuesday and Wednesday.  I tried to do some fun things with them, since it’s the last week before school starts, but found myself a bit wiped out at the end of the day yesterday.  Silly, silly me. 

For this week, Thursday is the “new” Wednesday.  HA!

I have a video I want to share.  I love it!!  It’s about a tortoise, which made an amazing recovery, after needing to have its leg amputated.  The solution was creative and ultimately saved its life.  It’s only a minute and 40 seconds long.  Please watch this… www.youtube.com/watch?v=B-ErWsA5guU&feature=player_embedded.
                                                                                                     
I love the story about the tortoise mostly because of how simple the solution was.  I find myself over thinking at times and miss a solution that could be pretty simple… maybe you can relate?  I have a couple of examples to share, not about the over thinking, but more about solutions which made a big difference.  These are not all my solutions, so I’d like to thank those wonderful people in our life who have helped us!!

At school, Alyssa has a touch screen computer to use for learning.  Alyssa’s Occupational Therapist shared with us, Alyssa was struggling with the computer because of the way she would try to manipulate the screen.  Alyssa would tap the screen with the tip of her fingernail, unsuccessfully.  Our team, at school, came up with a suggestion to try thimble or maybe some gloves.  A local knitting shop had both.  The knitting glove is Alyssa’s preference and it works great.  These do not work on I-Phones, but they do work on the touch screen computer.

Alyssa had a habit of taking her clothes off through the night.  Maybe this doesn’t seem like a big deal, but when she would remove all of her clothes, it included her night pant.  Often, this would lead to accidents in bed.  No fun for mommy.  By the way, mommy doesn’t like laundry!  I was having coffee with a friend one morning and she suggested I take the blankets away.  Score, this totally worked!  As long as she has a sheet, she is happy.  This is probably more appropriate for summer, anyhow.  I am guessing this experience was Alyssa trying to tell us, she was too hot at night.  I can’t even tell you how many weeks went by, before having this easy, easy solution, revealed to us. 

We can’t have fencing in our neighborhood because of home owners’ association rules.  We wanted Alyssa to be able to play in the yard, but wanted her to be able to know her boundaries.  Large rocks and grass helped her ascertain her play area.  By adding a sprinkler, she is in backyard heaven and loves it.

Alyssa is tall, very tall.  She used to climb up on our TV stand and sit directly in front of the television.  This made me crazy.  I didn’t want her to be so close to the screen, not to mention, I didn’t want her climbing on the furniture.  A neighbor came by one day and saw Alyssa climb right up.  The neighbor asked if this bothered me.  I said, “Yes, more than you know!”  Our neighbor makes beautiful furniture.  As a special gift, he made Alyssa (and us) an absolutely gorgeous wall unit.  It’s taller than the one from before and much too narrow for Alyssa to make a seat of.  She watches her shows from the couch now.  And, this special unit has “trick” latches.  The latches help keep the doors closed, so Alyssa isn’t tempted to empty the contents.  This solution has been a God send!!  If you are in the market for a custom piece of furniture, he’s your guy!!

Someone once said to me, “Sometimes, the smallest things make the biggest differences.”  Yes, yes!  I couldn’t agree more.  For me, I would bet, my difficulty is simply a circumstance, of sitting in the middle of the forest and having trouble seeing through the trees.  I just love the people in our life, which we have been blessed with, for always offering a perspective, from the outside view.  It’s so nice, to not have to do all of the thinking, on our own, all the time.  And, I find it extremely rewarding to come up with solutions, no matter how big or small, especially when they make a difference for Alyssa. 

Thanks for reading and have a great week.  Angie

Wednesday, August 10, 2011

Home Sweet Home

Home sweet home.  We returned, from our trip to Phoenix, late last night.  Alyssa had all her blood work done and her treatments went wonderfully!  Alyssa should be a model for taking the needle to the arm.  She lays her arm out, watches closely, but doesn't make a peep.  I feel pretty blessed for this, as I know some children, and adults for that matter, who react wildly.  She was four vials into the blood draw before I even realized she had been poked.  Amazing.  There is a calming that comes over Alyssa after her treatments.  It's so nice to see her relax, almost an exhale in her expression, a relief.  My thanks to The Center for Autism Research and Education, CARE, for taking such great "care" of my sweet angel.  For more information about CARE, go to www.center4autism.org.

I intend to resume writing next Wednesday.  Today, I will leave you with another writing I wrote early in the year.  I hope this will give some of my newer readers a chance to catch up on reading and for others, a chance to share what they have already read.  As always, thanks for reading and have a great week!  Angie   

Wednesday, March 2, 2011

Fancy Shoes


From the outside perspective, I want to wear your shoes, jump over my fence and roll in your grass, drive your car, wear your perfume, play in your closet and feel what it feels like to be you.  I want to escape my world for a day, feel like a queen, walk the red carpet, have your waistline and douse myself in the lifestyle you have.  Whoa, whoa, wait a second… your shoes are much like mine, they are dirty, scuffed and worn.  They have deep lines and cracks.  They are not so fancy, as I thought they were.  I get to your backyard and winter has made your grass look just as bad as the grass I have.  We are so much alike.  But, you say to me, “I don’t know how you do it”.  It makes me feel like your situation is much easier than mine.  It makes me think, your shoes fit much nicer than my own.  I laugh, I realize, I don’t want to wear your shoes after all, you might even have stinky feet, HA.

I have been accused of being one of those people where everything looks perfect.  Fancy shoes?  Not exactly!  I can assure you, what you see on the outside is more a reflection of tidiness, than cleanliness or perfection.  I have been told my house always looks clean; Thank God for drawers to shove all the clutter into.  My closets, cabinets and drawers are a mess.  From the outside looking in, you could be lead to think “she has it all together”. Yet, on the inside, it’s a fright.

Years ago, we went to dinner at this very nice restaurant.  We went early, since Alyssa was joining us.  Soon after being seated, an older couple was seated directly next to us.  Oh for the expressions on their face.  They grumbled under their breath.  “This clearly was NOT an establishment for children”, you could see them say, through their darting looks, hurled our way.  I got out the snack pack and started Alyssa’s dining experience.  Ravioli’s, yum!  She was delightful and happy.  She sat quietly, smiling, eating and looking around.  By the time her ravioli’s were finished, our food came and her second course began.  The evening was perfect.  At the end of the meal, the older couple came over to us.  They said they owed us an apology.  They were sure, from the moment they were seated next to us, their evening was going to be ruined.  They were only able to see the outside appearance at first.  By spending some time near us, they were able to experience something different, a well-mannered child enjoying her time in the community.  Thank you, Alyssa! 

Easier to judge, than to be judged, right?  As Alyssa got older, her behaviors were not as well-mannered in the restaurant or community setting.  I remember someone saying to me, “your child is out of control”.  Silly people, it’s not my child who is out of control, it’s me.  I cannot control this.  Autism is an entirely different world.  If you were a Mime, how good would you be at “miming”?  What would your expressions and behaviors make people think of you?  Alyssa is trapped in herself.  Unable to express, the way we do.  Unable to say, “I want to eat pizza”.  Instead, she points, she pushes, she pulls, and she may even throw what you call “a tantrum”.  When you look at her, try to see, the shoes she wears are army boots and she is in a battle called Autism.  These boots are too tight on her feet, they are too heavy to carry, uncomfortable, maybe even, unattractive.  I believe she may need a foot massage.  Sadly, this will not fix her behavior; her behavior is a reflection of what she cannot express.  Alyssa was given army boots, to help her with her battle and to protect her from all the bullets that may fly her way.  She is a person, much like you, but she is different and it’s apparent.  We could all do so much better by finding a place in our hearts for differences, making room to cast a smile, giving one another the feeling of hope and encouragement, a smile that says, “It will all be okay”.  When you see a person not acting the way you do, take a second to think to yourself, they just might be wearing army boots and struggling with a battle of their own. 

We all have difficulty, hardship, blessings, good, bad and even, ugly.  I want to reach out to you.  I would like to share what I have been blessed with, share my hope, which feels like my strength.  I want to leave my judgment behind.  I would like to reach out and make you an offer….  If you are wearing army boots, give them to me, I will help you carry them.  I will do my best to help you know, it’s all going to be okay.  You are welcome to my shoes; you can have them, in fact.  I feel, I am entering a different place in my life and it may be time, for me, to start walking barefoot! 

All my love and thanks to those who have helped carry me through!!!  You are the world to me!!! 

Thank you for reading!  Have a great week.  Angie

Wednesday, August 3, 2011

Visible Walls

Alyssa and I will leave tomorrow to go to Phoenix to the Center for Autism Research and Education.  This will be our 37th trip for Alyssa's treatments.... who's counting?  HA!

This last week, I took some time to review what I have written so far.  While doing this, I noticed, a few of my writings have been quite popular.  So, I decided to re-post one of them.  For some, who started reading more recently, this post might be new to you, since it was written much earlier this year.  If you have read this already, I hope you will enjoy it again or pass it on to your friends.

As always, thanks for reading and have a great week!!  Angie

Visible Walls, FEBRUARY 16, 2011

This past Sunday, I watched a Joel Osteen live church service.  He spoke of what he called “invisible walls”.  Most of his sermon was about accepting one another for who we are on the inside, not from what we may look like or who we are on the outside.  He encouraged us to recognize diversity, as good and healthy.  We shouldn’t think of ourselves as “exclusive”, instead, inclusive, all together in one universe.    

I understand Joel’s message all too well, not because I live a life of indifference towards others; instead, I have a daughter who has differences and she experiences the walls of indifference.  The walls we build are quite “visible”, from the way I see it.  Too often the walls are built out of fear or dislike.  We allow the walls to grow big and tall to protect us from all the things we don’t understand or what we clearly object to.   

The most obvious “visible wall” example I can share with you happened in Alyssa’s pre-school days.  A beautiful little girl came running up to me and said “I am having a birthday party this weekend.”  I said, “you are, how exciting!”  She gasped, covered her mouth and said, “oops, I wasn’t supposed to tell you”.  My heart plummeted into despair.  The classroom etiquette was this; if you invite one student from the class, all students “should” be invited.  This child was unfairly put in the middle of this situation.  She accidently divulged the news of her celebration, which was clearly a celebration, which would not include Alyssa.  I realize, the little girl was supposed to keep this a secret and was probably instructed to do so by her parent(s).  It makes me sad, for the little girl, who had to learn, at such a young age, how to build a wall because her classmate was different from her.  I fear our children grow up and those early walls become huge dams, permanent obstacles.  How can we come together and stop looking at the outside and embrace the qualities on the inside? 

If you look at Alyssa on the inside, (not at the obvious and apparent delays in her development on the outside) you will see Alyssa’s most valuable assets.  Her heart is beating strong and she is full of love.  She can give you a hug, which will melt your heart. Alyssa is a sweet and silly little girl, much like other children.  She has a disability, but she is so much more than that too!  At times, she will repeat herself, over and over, until I am able to say what she is “trying” to say.  She wants to communicate, yet her mind gets in the way, causing her difficulty.  Should we look at this difficulty and build a wall against it, or should we break the wall down and join together to help her?  Who would she be without those individuals who embrace her?  What would her future hold without relationships? 

Unfortunately, this is not the first time Alyssa has been excluded from something.  It just happens to be one of the times, we found out.  I feel like, if I jump into the deepest part of my soul, I can see how someone wouldn’t want to invite Alyssa to their celebration because of their fears.  I will even say, those fears may come out of someone thinking there is a chance, I may drop Alyssa off at a party and leave her.  It makes me laugh because if I manifest these particular thoughts, I can almost envision her as a Godzilla tearing through the inviting family’s home causing mayhem and destruction.  The truth is this; I would never drop her off.  I would go with her and help her celebrate her friend’s special day!  I would pray there would be no mayhem!!!

Today, I hope you will join me, by embracing differences.  If we all take the time to break down the walls, there is a chance, we will gain from this on our insides.  What we have blocked out and tried to steer clear from may actually be the best thing that ever happened to us.  How would we ever know, unless we take that chance? 

I need to follow this story up with some thanks.  First and foremost, I would like to thank all the families who brought their kids to Alyssa’s first birthday party, which happened this past December, when Alyssa turned 7.  I am incredibly thankful Alyssa has developed some friendships.  I would like to thank every parent who has expressed an open heart towards my Alyssa and I admire what you are teaching your children.  Even though my daughter has differences, she has something very special too.  Thank you, for allowing “different”, to be “okay”. 

The children who Alyssa has formed relationships with and the friends who continue to support us are absolutely a blessing!!  You have brought encouragement to us and we couldn’t do it without you!! XO
 
Thank you for reading and have a great week.  Angie