Wednesday, April 27, 2011

Trading Places

Over this last week, I had an opportunity to help some friends by watching their children and pets.  Alyssa joined some of the time, but mostly spent her evenings and weekend with Daddy.  I should preface my sharing, by telling you, the kids I watched are typically developing kids with amazing parents.  The kids are in first and fifth grade.  They have wonderful manners, are full of personality and were a joy to watch. 

The son, who is oldest, is hilarious.  He is a powerful negotiator with a heart of gold.  On the first morning, I made them breakfast and packed their school lunches.  He came over to me with a dollar and handed it to me.  I said, “what’s that for?”  He wanted me to have it, “a tip’, for making his breakfast and lunch.  So polite, but I shared with him, it wasn’t necessary and returned his dollar.  He was equally happy to keep it.  This made a smile form deep from inside my heart.  How often do we meet children today who want to tip their sitter, from their own allowance?  Later in the week, he saw that Alyssa was watching an old VHS tape of Aladdin.  He told me, he has the updated version of Aladdin 1 & 2 on DVD and he would like to give them to Alyssa because he knows she would like them and he doesn’t need them anymore.  Is this boy for real?  What a sweetheart.  I was taken back by his generosity and willingness to give to others, from his wallet and his personal belongings.  Impressive!!

The daughter, who is Alyssa’s age and grade, was like a mini-mommy.  If I didn’t know where something was, she was on it… literally.  If it was on the top shelf, she was up on the counter in a matter of a second and retrieving what was needed.  She has the ease and flexibility of a gymnast.  You can tell she spends a lot of her time with her mom because she was a great little helper for me.  As I did little projects here and there, she stayed close.  It was so much fun to be managed by a first grader.  She was clear to me on how she thought it would be best for me to do things, so I followed her lead (for the most part).  We learned a new game, which was fun for us both.  Before bed each night, we would pick out her cute outfits, and do her hair pretty.  She is a fashionista!!  She knows what she wants, how she wants it and was very clear in communicating those wants/needs.  This was very fun for me, especially because I got to see what was important to a girl Alyssa’s age.  When Alyssa joined us, she played with Alyssa, followed her about and kept me informed of Alyssa’s every move.  Later, she told me, what she thought, Alyssa thought.  I loved this!!!  Even though, she was sharing her own thoughts, it helped me understand what kids think about.  She told me what Alyssa likes and dislikes.  I wish she was around more!

As I look back on the week, I can only tell you, this was a great experience.  We did homework together.  I made the meals they desired and took them out to dinner one night too.  We went to the movies and did a little shopping.  Funny, my negotiation skills improved.  I was caught by surprise from time to time, at which point, I had to kick my thinking into high gear to develop the right response.  In a matter of speaking, you could say, my brain got a work out. 

I feel like I gained a lot from this experience because I was able to learn some new things to try with Alyssa.  Since Alyssa doesn’t make personal requests, I generally have to guess what she likes.  Now, I have a whole new bank of ideas.  Next time I take Alyssa to Wal-Mart, I will take her to the toys and wait while she picks out a new toy of "her choice".  When we go out for a family dinner, I will get Alyssa a Shirley Temple, so she can enjoy this drink, which kids have loved, since what seems like forever.  Before bed, I will put together some outfits and see if she will pick one to her liking. 

All in all, this exerience heightened my awareness of things Alyssa may enjoy and opened my eyes to some things I should try.  It’s easy to go through our routine, not even aware, how doing things different, can be good.  I hope this will help me be a better mom for Alyssa.  If only we could all trade places to see what it is like on the other side of the fence. 

In loving memory of Baxter, our loyal and energetic boxer.  He will be missed more than words can express!!!! 

Thank you for reading and have a great week.  Angie

Wednesday, April 20, 2011

Called to Action

I believe we have a national crisis in front of us.  Have you heard the expression, “it takes a village to raise a child”?  Who is going to care for all of the children with Autism, when they become adults?  I can assure you, with the ever growing numbers of diagnosed children, it’s going to take more than a village.  It’s going to take every single one of us and then some!  It is anticipated, over the next 15 years, at least 500,000 children with Autism will enter adulthood.  These numbers are staggering and every bit real.  Personally, I think this projection is low, very low.  The latest statistics are bouncing around.  I have seen 1/110 children to be diagnosed and 1/91.  Either way, I am betting, 500,000 isn’t even close, to being, an accurate figure.
I read an article in Parade, it’s called, “Autism’s Lost Generation, Who Will Care for Dana?”  Dana Eisman is 20 years old, preparing to graduate from high school.  She uses a computer to express herself.  Her mother asks her, “What do you want to do next year; what is your dream?”  Dana types, “A good job; I want to be safe and happy.”   I take a huge deep breath.  My heart aches for this family.  I feel their worry.  I live it too.

There are some fair questions worth asking….  What will happen to the children with Autism when they graduate from high school?  Who will care for them?  Who will hire them?  What kind of jobs will they do and money will they make?  Who will protect them?  These questions rattle me.  I am not only faced with advocating for Alyssa’s education, but futuristically, I will also need to help her prepare for work and independent living.  I look up to the sky and say, “God, I need to live forever!!!”  I suppose this is an unfair request.  Now what? 

I have shared with you in a previous writing I want to start a foundation.  It’s happening.  My goal is to be able to have all the logistics done by the end of summer.  I need to do my part.  See, I have been incredibly blessed by people who have helped us along the way, who have made it possible for us to afford some of the medicine, therapies and equipment we have wanted/needed for Alyssa.  At this point in my life, I am unable to give back to those who have helped us.  Unless....  I can take what they have given us and turn that into an opportunity to help other families, like ours. 

My excitement supersedes me.  I am bouncing off the walls.  Sleep is out of the question and I can hardly shift my focus to remember daily tasks.  I can’t wait.  I want to a part of the solution, a part of the big picture.  I hope you will all want to be a part of it too, when the time comes.  I have been blessed with Alyssa.  She has called me to action.  Her love sponsors my energy, so I can do what is needed.  I am jumping into the drivers seat and cannot wait to arrive at my destination.  Pedal to the metal, it's go time. 

Thank you for reading.  Have a great week and a Happy Easter!  Angie 

Wednesday, April 13, 2011

Candid Fears

Picture this….  I am approached by a parent last year.  She comes to me to find out what the risks are for having Alyssa in the same classroom as her child.  I share with her, the research I have read indicates classrooms with children who have special needs, do not go backwards and often do better than other classes.  The research doesn’t indicate failure, instead, success.  See, when children help one another, they become stronger together.  Your child may learn how to be around someone who is different, while giving my child a chance to be influenced positively in her learning by the power of example.  You have to know, this mom has changed my life forever, in a good way.  Her honesty and fear helped me see what others may also be feeling.  

The truth behind the hidden camera, it is likely, there are families who would prefer children with special needs not be in the same classes as their own wonderful kids.  The fear is real and significant.  I understand.  The fear defines our desire for our children to be and do their best, within their educational experience.  This is the same thing I desire, for my Alyssa.  I hope and pray, on a consistent basis, for Alyssa to be able to achieve enough learning and create enough relationships, so when we, her parents, are no longer available, she will be able to function in a society, without being thrown into an institution or group home, without being placed on disability for an income, without dependence.  I live and breathe my fear.

After preschool, children with special needs are sometimes placed in self contained classrooms, away from typical kids.  It is very difficult for me to talk to you about this.  It breaks my heart and brings me to tears to think of Alyssa being thought of as “less” than any other child, and not worthy of being around her classmates in a stimulating, learning environment.  Back to the research momentarily, the research shows, children who are in self contained classrooms, do not typically make the strides shown, by including them with their typical peers, in a regular classroom.  Maybe you wonder why?  When you have two children who have limited communication skills and you put them together, they are not able to advance each others weakness.  However, when you place a child with limited communication with typical children, the child is impacted by many super communicators.  It’s awesome.  It opens up the door for unlimited learning opportunities.    

Years ago, in preschool, there was this sweet little girl who came to me and said, “Alyssa can come over to my house for a play date”.  I replied, “You should probably ask your mom”.  She said, “Its okay, my mom is fine with it”.  To this day, I am impacted by this conversation in ways I cannot explain.  This I know, Alyssa would not have had this opportunity, if she were in a self contained classroom.  That be said, I love this little girl.  I am so deeply touched by her expression and her willingness to be a friend with my daughter.  Later, this little girl came back to me and said, “It’s okay if Alyssa doesn’t talk”.  Thank you!  A four year old has permanently affected my heart.  If only we could all be so kind and not care about differences.  Children are incredible.  For me, they bring laughter to my life and fill my heart with hope and joy. 

Alyssa is making beautiful progress this year and she is impacted greatly by all of her peers.  I believe in Alyssa.  She is so much more than what we might see on the surface.  For us parents, we both have fears, hopes and desires for our children and I bet they are very similar.  There is always a chance I will be scrutinized, by others.  I am always at risk, of the possibility, someone out there, may prefer for Alyssa, to not be around their children.  Once again, my heart breaks, but my passion for Alyssa and her opportunity to have the same experiences as other kids and the chance to become something later in her life, guides me to doing what is right for her.  I shift my fear into trust.  I trust I am making the right choice.

Thank you for reading and have a great week!!!  Angie

Wednesday, April 6, 2011

Internal Erosion

As the waves come crashing into the beach, the beach changes and takes on a new look.  As the sun, wind, rain, sleet, hail and snow hit the mountains, rocks and ground, they transform the earth, slowly, but definitely.  These past few years, Mother Nature has delivered some storms, which have not only eroded the beaches, but caused devastating damage.  A few years after these events, we see a community regain its form.  The community seems to take on a whole new beauty.  Not referring to the physical attributes of new buildings, instead, a new beauty in the people.  They have spent relentless hours rebuilding, working together and offering encouragement, hope and love to each other.  The devastation has changed them forever.  The destruction has become an opportunity to get back to what’s really important.  It’s no longer about the “me” concept and the “what I am going to get out of something” attitude.  It’s about the whole community.  It’s about a whole community achieving something beautiful together.  
There is a dancer, this season, in the Dancing with the Stars competition, who was part of the re-building process, the hope, after the Haiti disaster a few years ago.  She explains the devastation and how hard it was, yet beauty evolved.  As you watch the people from Japan endure the struggle from the recent devastation, there is a sense of grace; there is already beauty present.  I am taken back, a step, or many.  I am humbled.  I wonder if God and Mother Nature are working together to provide a valuable lesson?  A good message?  I believe through all the devastation, God provides a message, of good, not harm.  A message that brings us back to love.  Our foundation, our strength.... love.

Recently, I was so exhausted.  I am not sure if this is an illness, but it felt like one.  It makes me wonder, when we allow ourselves to internalize all the challenges in our lives, are we causing internal erosion?  What do we have to offer, if we allow this to occur?  I know personally, it’s usually not just one thing that is happening before I find myself overwhelmed.  We all have different challenges and some may be more difficult than others.  It’s what we do with the challenges we face that makes all the difference.  Personally, when I allow the stress and frustration to build and become the primary focus of my day, it isn’t pretty.  I will admit, there isn’t much grace within this approach either.  The storms come and go, but if we panic every time one approaches, we may find ourselves lost in the woods, when we live by a beach or wandering the beach, when we live in the woods.  I have to make a conscious decision to get myself in gear.  It takes guts to get out of ruts!!  Rut – be gone, go away, you had your chance, but you lost this one.
The past three years have been especially difficult for me.  We are up against different challenges, than typical families face.  You may be facing the “terrible two’s”, we skipped those (I giggle to myself, like I won something, on this point).  We have an enormous amount of time spent on education planning, whereas, your kiddos may follow a regular curriculum.  Our ongoing medical, therapeutic and special diet needs are super high, yours might not be.  When I look back over the last few years, what got me through?  Well, that’s easy… YOU!!!  You provided an umbrella for the rain, boots for the snow and shelter for my heart.  It is you who gave me hope.  You gave me strength for myself and to share with others. 

My future is not entirely clear, but I know, I want to do good things, not for “me”, but for others.  I want to make a difference.  First, my website needs some attention.  Then, I would like to start working towards creating a foundation or non-profit.  I would like to be a part of a “re-build”, to offer families, who have children with Autism, hope and resources.  I haven’t figured out all of the details, but this I know….  My storms have brought me to a new understanding of what is really important.  It’s not me, it’s not Alyssa, it’s not you… It’s ALL of us.  I will be working to make a place for all of us to come together to make a difference.  Whether you know someone with a child who has Autism or not, that’s okay.  There are no prerequisites to be a part of building hope, offering love and doing something good.

I choose goodness to conquer difficulty, love to conquer devastation and hope to beat the pants off fear!  I have everything to be thankful for.  Especially for you, my friends and family, for not allowing me to stay in my ruts too long, for being in my life and showing me the beauty that evolves from the storms we encounter. 

Thank you for reading and have a great week!!  Angie