Wednesday, December 21, 2011

Merry Christmas

I have been away for the past few weeks because on November 9th, I had an aneurism rupture in my brain.  I was transported to Denver for medical treatment and stayed there for 30 days.  The doctors performed a brain surgery and successfully "clipped" the aneurism.  I can only say, I have received the most beautiful gift, a blessing this holiday.... my life.  I am taking it slow, but will hope to resume writing soon. 

For now, I just want all of you to know how much I appreciate you!  So many of you looked out for my family and kept us in your prayers.  We couldn't have done it without you.  Thank you from the bottom of my heart!!!!! 

Merry Christmas and Happy New Year!  Much love, Angie

Wednesday, November 9, 2011

Breaks and Thanks


This last month has been wonderful and refreshing.  I have to mention this because there are times I may disclose difficulty, in the blog or otherwise, without the mention, of the other… the magnificent!  I feel the need to tell you about some of the people in our life who have made a difference for us. 

It had been a very long time, since I/we had our last break, so I want to say thanks to some of the loveliest people in our life, as they helped us, and/or me, “break even” in the scheme of daily life.  It’s hard to explain daily life in our home, at times.  When you are caught up in all the moments, you can lose track of what is keeping you sustained, happy, healthy and thankful.  I can only say, all of you, everyone we know, you all ROCK!  As we approach Thanksgiving, it seems more than appropriate to make sure the “rocks” in our life know they have impacted us….. 

Last month my fabulous, sweet, friend, Hillary, who I love dearly, included me on a girl trip to Santa Fe, NM.  We had an incredible time.  This was a trip without kids, just moms.  I would never have had this opportunity if it wasn’t for Hillary.  I can only share my gratitude, as I really needed some down time; the break was golden.  My husband stayed home with Alyssa, so this could happen; so sweet!  The group of moms on this trip were the best EVER and I hope to be able to encounter them all again; they all made a difference in my life.  Great thanks from me, to all of you!

This last Friday, my husband and I scooted away for a night out, while Rachel, one of the most fantastic and wonderful friends in my life, came to my home and hung with Alyssa.  We had received a gift certificate for a one night stay at a local hotel from our friend, Cindy, who is a beautiful lady, with an amazing heart, one of the loveliest people.  It was beyond superb to take a bit of down time.  This break was only possible because of these two exceptional ladies!! 

Breaks can help put us back on top of our game, when everything else happening may feel overwhelming or difficult.  These breaks have helped me, personally, come to a better place.  When having a child with special needs, breaks can be rare, even extinct, making my appreciation that much greater.  As some of you know, I run a program for families who have children with special needs.  The kids who participate in this program come and play, while their parents scoot away.  I love this program even more now.  I have been reminded why I do this program and what a difference it can make to a family, to have a little break.  I am glad I can do this for others and I am extremely thankful for those who have extended their graciousness to us.

My feeling of thanks isn’t limited to those who have created opportunity for breaks for me and my family.  My feeling of thanks extends way beyond that.  This past year has been full of challenges and there are so many people who have helped us through the day, week and year.  My friend Sue is always there to check in and make sure I am not losing my noggin.  Sue has been there beyond the call of friends.  She has helped us through some of our most difficult challenges, without judgment, full of love.  Then, there is our family, who all live in other states, yet they do their best to check in with us, offering a sense of connection and a wishing they could be here more.  Our connections, near or far, make us more complete.

There are so many, so many, exceptional people in our lives.  Kristina and Brooke sustain my sanity and try to keep me healthy.  They both “fill me” with more than I can explain; I am loved and I love them.  Laura motivates me and nurtures our long friendship, a friendship that runs like a river… It’s deep, real, with life’s most wonderful and difficult moments, enchanting and ever flowing; Laura brings me into my own and reminds me how genuine and beautiful friendship is.  Joy lives thousands of miles away and doesn’t let space be a barrier to our friendship – she is fabulous.  Regina makes me laugh a ton and her experiences encourage me to want more.  Who else, who else?  Oh yes, all of you!  It’s hard doing a writing like this because I could go on and on.  Let me just say – YOU ALL COMPLETE ME!         

If you weren’t mentioned, by name, you are not left out, you are the best, for being here for me (us), then and now.  It’s not what you do!  It’s all about recognizing that you all have taken me (us) through, to here, to now, to a better place and I love you!  You all have kept us going and we are not the same without each and every one of you. 

I am reminded; we are all in this together.  Where would we be without each other?  For us… nowhere, without you!  We all have stuff – is that fair to say?  With the extraordinary people in our lives, “stuff” seems a bit easier.  Our love, our thanks!

Thank you for reading.  Have a great week.  Angie

Wednesday, November 2, 2011

Wonderfully Different

First, check out this link.  Two minutes of fabulous!!!

http://youtu.be/iAc4N_drTXU

I will be the first to admit, I have seen the above link many times.  I am sharing it today because the most beautiful message is shared in this clip.  It's short, but powerful.  Oh yes, it's definitely about autism, but it's about so much more than that to me.  Each time I watch the video, my eyes fill with tears and my excitement, my adrenaline, soar.  The young man in the video, Jason McElwain, has autism, but doesn’t stop a bit short, with his performance, on the basketball court.

The coach is awesome; from my perspective, he ROCKS!  The coach decides for the last game of the season to have Jason suit up for the game, so he can feel what it is like to be in a jersey.  Then, surprisingly, the coach takes things one step further and puts Jason in the game.  Listen to the coach.... "Dear God, let's just get him a basket."  The coach could have left Jason sitting on the sideline, but he took a leap of faith and he wanted Jason to have this experience.  I believe this coach changed Jason's life, lifting his spirit, just by giving him these four little minutes!

There is much to be said for this basketball team too.  Did you notice, after Jason missed two baskets, his teammates continued to give him the ball?  I believe, the imperfection created an opportunity and showed us the true character of the people, advancing Jason, while changing the lives of everyone there.  Jason's teammates and the crowd go completely wild.  Jason shares, “he is used to feeling different, but never this different, never this wonderful.”

Can you remember the last time you felt wonderful?  Often, I find myself so caught up in the mission of seeking solutions for Alyssa, I feel more stressed and tired, than wonderful.  I might be guilty of taking it all too seriously.  You see, the coach could have taken the score of the game so seriously that Jason may not have got this opportunity, this chance of a lifetime, to step into the game and score the way he did.  I admire the coach for setting aside all the possible reasons that could have held him back from taking the plunge and putting Jason in the game. We are all on teams, whether it be at our work place, a sport, or even being a family.  I would like to say, there might be something wonderful about passing out water bottles and cleaning up the sweat, of whatever team you are on, because later the reward could be something sensational and offer a new outlook on life!

In today's society, it seems we can easily get caught up in the details, while missing out on the experience.  Just think, by taking a leap, we may all be on the cusp of a "wonderfully different" day.  Furthermore, our leaps could change many lives, more than just our own.  I would like to use the experience from this video to encourage one another to work more towards lifting each others spirits!!  On the same note, I want to help Alyssa enjoy her experiences, while allowing her to be different.  I hope Alyssa will get many chances to feel "some kind of wonderful", offered up by the treasured people in her life, those who wish, like we do, for her experiences, and spirit, to blossom, much like the vibrant flower she is!  

Thank you for reading and have a great week!  Angie

Wednesday, October 26, 2011

Special


The most special words have come from Alyssa in this last week.  Monday was a very difficult day for me.  It’s so beautiful to see Alyssa responding to what is happening.  I sat on the couch for a little break and she came over, climbed in my lap and gave me snuggles.  I told her, “I love you” and she replied clearly, “I know!” 

Her words are often difficult to make out, yet there are times, they are crystal clear.  I wonder, how long her mind works on processing, what she has to say?  One day, will she speak with the freedom, some of us, “might” easily, take for granted?  I think… YES!!!  I wish I could know her every thought, feeling, her desires, likes and even dislikes.  I am encouraged to know from her, she “knows” I love her.  This means more than everything; it supersedes my wishes to know the rest. 

I went into her room this morning.  She says to me, “hi mommy!”  She was so happy to see me and immediately jumped into my arms offering her sweetness, a full wrap hug.  As she went through her morning, she did everything full of language, including counting to 38.  She followed through by saying, “I love you mommy.”  Four huge words, but the best, the most special, of any words she could ever share.  Once again, I am wowed by her.  I know it’s all in her, but I don’t always hear the confirmations through her verbal expression, yet have to remain without doubt and give her the time she needs… it’s all coming.  She needs to know, I believe in her, more than anything!  This may even help her along the way. 

Another hope for me, I hope, one day, I will be able to write about the other side.  I hope to hear all she has to say and be able to share it with the world.  It will be interesting to hear her, tell her side, of this beautiful journey.  Until then, I will continue to be reminded by her current verbal expression; she is the most special person I have ever known and truly the love of my life. 

Thank you for reading and have a great week!  Angie

Thursday, October 20, 2011

Big Ears


Today, I heard an adult say to an adolescent, “don’t make me say it again!!”  My brain raced, what was going to happen if this same adult had to “say it again”?  It almost sounded like a threat, especially given the tone used.  Have we become more about being heard, than listening?  I only say this because the person being yelled at happened to have a disability.  I am afraid some of us “might” be guilty of taking our own ability to communicate for granted.  Yet, I challenge, what was this young person, the one who doesn’t speak, what was he trying to communicate, and what kind of behavior did he exhibit, to cause such an emotional reaction, from the adult?  As adults, why are we so short fused, requiring demands over negotiation and listening?

Last night, I was busy, busy.  I had work, laundry, a friendly meeting, and was feeling kind of icky, on top of it all.  I’d call that the whole shebang.  I am not complaining, but you could say, I was complicated.  Around 11pm, I finally laid down.  At 11:15, Alyssa awakened from her sleep, so I got up reluctantly and gave her a bathroom break, then put her back to bed.  Well, she wasn’t ready to go back to sleep.  She was giggling and talking (not understandable, but had a lot to say).  I decided I should go into her room and lay with her for a few minutes to calm her and hopefully help her back to sleep.  We were both very still and quiet for a bit; we were both awake, but silent.  Then, very softly, she said, “I wuv you.”  I said, “I love you too.”  And, then, once again, very softly, she repeated, “I wuv you.”  I am incredibly thankful for our silence.  I am thankful for not becoming frustrated because of how tired I was.  Can you imagine… if we didn’t have our special silence, I would have never got to hear what she wanted to say.  As soon as she said, “I wuv you”, the second time, she went fast to sleep. 

A few years ago, I was at a training… wish I could remember what the training was called… Anyhow, the instructor was talking about language use with kids.  The instructor was orchestrating how we, the adults, say all kinds of things that backfire.  He pointed out some of those phrases like…. “pay attention”, “listen to me” and “did you hear what I said?”.  He gave a beautiful message reminding us parents to recognize, our kids are always listening.  He encouraged us to leave out those unproductive phrases, in order to achieve better, more effective communication.  He showed us, this kind of language only manifested things and often was a response to our own frustration.  I AGREE!!  I am not challenging anyone else; I am only challenging myself.  What good will it do, to get frustrated, and say, “are you hearing me”?  I imagine a teenager (not picking on teenagers) hearing every word and shutting down as the words are spoken.  Here comes the eye roll, in perfect order.  Is the adolescent all wrong?  Or could we, the adults, work on listening differently or better?

Flipping the coin a little, you must know, families who have kids with special needs, often feel unheard by their kids.  I have read about this and live some of it.  See, when you have a child with Autism, there can be noise, there can be sounds, there can be words, but full sentences, describing wants and needs, well, that’s not as easy to come by.  I can assure you, all children, even with disabilities, are listening, more than ever.  For parents, we don’t always know, what is, or isn’t, getting in.  I can vouch and tell you, it’s all getting in.  Alyssa hears everything.  And, she understands it too.  If I ask her to come with me, she usually will.  However, if she doesn’t, there is usually more to the equation.  Maybe I am even caught not listening to her.  If I can stop and take a moment to see what is happening, I may recognize, she is interested in a show and not ready for it to end.  Or, she may be bouncing on her ball and not quite finished.  Bottom line, if I am pulling her my way and she resists, she is telling me something.  It’s not easy stopping my mission in some cases, like when we need to be on time for something.  Then, there are other times; I hope to be more flexible.   I can honestly share, when Alyssa wants something, if I am not listening to her, I can inadvertently create frustration.  So, the golden question….  How do you listen, when someone doesn’t have fluent verbal expression to offer?  My guess, the other senses have to be challenged.  It’s only fair to acknowledge, there is much to share, but more to learn by listening. 

Bottom line, I want to have “big ears”.  Not the kind Dumbo flew with, but the listening kind.  I want Alyssa to feel respected for what she wants to say, even if her words are unavailable.  I will use my senses to listen.  I will try.  In return, I hope she will continue to keep me up at night with her “I wuv you’s” that remind me, we are still on track. 

Thank you for reading.  Have a great week.  Angie

Friday, October 14, 2011

The Letter


A friend of mine posted this story on Facebook.  It was such a great story; I wanted to share it with my readers.  As I read this story, I was reminded, God is found in love.  I am grateful for the special relationship I have with Alyssa, as she incredibly loves.  I get so caught up in searching for answers, solutions and for life to come with more ease.  I am reminded; things are okay, just as they are.  There is a part of me always wishing for Alyssa to not have Autism.  I wonder how much I am wishing for the wrong thing.  Here she is, such a love bug, things could be way different.  I am blessed.  Just saying!

The Story: 

Our 14-year-old dog Abbey died last month. The day after she passed away my 4-year-old daughter Meredith was crying and talking about how much she missed Abbey. She asked if we could write a letter to God so that when Abbey got to heaven, God would recognize her. I told her that I thought we could so, and she dictated these words:  Dear God, Will you please take care of my dog? She died yesterday and is with you in heaven. I miss her very much. I am happy that you let me have her as my dog even though she got sick.  I hope you will play with her. She likes to swim and play with balls. I am sending a picture of her so when you see her you will know that she is my dog. I really miss her.  Love, Meredith

We put the letter in an envelope with a picture of Abbey and Meredith and addressed it to God/Heaven. We put our return address on it. Then Meredith pasted several stamps on the front of the envelope because she said it would take lots of stamps to get the letter all the way to heaven. That afternoon she dropped it into the letter box at the post office. A few days later, she asked if God had gotten the letter yet. I told her that I thought He had.

Yesterday, there was a package wrapped in gold paper on our front porch addressed, 'To Meredith' in an unfamiliar hand. Meredith opened it. Inside was a book by Mr. Rogers called, 'When a Pet Dies.' Taped to the inside front cover was the letter we had written to God in its opened envelope. On the opposite page was the picture of Abbey & Meredith and this note:

Dear Meredith,  Abbey arrived safely in heaven. Having the picture was a big help and I recognized her right away.  Abbey isn't sick anymore. Her spirit is here with me just like it stays in your heart. Abbey loved being your dog. Since we don't need our bodies in heaven, I don't have any pockets to keep your picture in, so I am sending it back to you in this little book for you to keep and have something to remember Abbey by.  Thank you for the beautiful letter and thank your mother for helping you write it and sending it to me. What a wonderful mother you have. I picked her especially for you. I send my blessings every day and remember that I love you very much. By the way, I'm easy to find. I am wherever there is love.  Love, God

Thank you for reading and have a great week.  Angie

Wednesday, October 5, 2011

Oh Poor Me


I can remember my Aunt’s words, running through my memory, as if she is sitting in front of me now and saying, “Get off the O. P. M.”  Good advice, in my opinion, but these days, I am not as much feeling sorry for myself, as I am lost in what to do.  I have told you before, yet I cannot stop myself from saying again, Alyssa is the most amazing, fun, loving young girl – she’s the best daughter EVER!!  These last few weeks, I have seen a different level of frustration in her though.  She doesn’t always portray emotions in a way that is controlled by her knowingness of right and wrong.  Her outbursts sound like cries for help to me.  She is desperate to express what she wants and needs, but there is a complexity to this, which doesn’t allow the freedom of her mind to develop language, when, and as, it’s needed.  I feel as if she is clinging to me for help and I am betraying her without a chance of making a difference for what is happening inside of her, which I can only love, but not fix.

This past weekend was especially emotionally difficult because I found myself with no answers, no solutions, completely vulnerable and beyond humbled.  For those who know me, you know, I spend my days and nights thinking of plausible solutions for this angel of ours.  She is my world and I want, more than anything, to be able to sit down and talk through how she is feeling and help her. 

Her language is like a pair of shackles, binding her to the floor, with no escape.  Where is the key?  How do I release her?  On Sunday, just about the point, I was starting to feel there was no light at the end of this tunnel; Alyssa said to me, “I’m upset.”  This seemed almost like a breakthrough, without details and explanation.  At the time, I was feeling pretty upset too.  I didn’t know how to help her, so I hid behind the bathroom door and cried.  I felt completely helpless.  Of all the therapy, medicine, and everything else we have tried, this is harder than it all.  I can only hug her and hold her, offering comfort in place of what might be an answer or solution. 

So, what’s next?  I don’t know.  Yet, I know “me” well enough, I can assure you (and Alyssa for that matter), I will keep praying and stay off the O.P.M., as best I can.  I don’t want to be that person, sitting around with all the complaints and no inhibition towards taking on the challenge or seeking a solution.  If I can only lift her spirit with the joys that come from tickles and the calmness that come from love, than I will allow myself to think, I am right where I need to be, for now.  I will do my best to embrace this as part of the lesson I am learning. 

For those of you who share this blog and continue to offer your love, support, friendship, prayers and everything else….  You are amazing to me and I thank you from the bottom of my heart.  That’s all I have for today. 

Thank you for reading and have a great week.  Angie

Wednesday, September 28, 2011

Unspoken


At times, Alyssa will look so deeply into my eyes, I feel like I can see the words pressing on her pupils, trying to escape.  I don’t know what the words were going to be, but I can see her attempt, her effort and sometimes her frustration.  If only it was easier for her!  I believe her mind works like a computer – highly intelligent, with programming glitches.  When asking Alyssa a question, you can almost see the question going into her mind, but then, her mind becomes scrambled, preventing her from being able to produce the words she wants to use.  I believe she has the words to express herself; they are just not easily accessible for her.

To be in her world for a day would be so enlightening.  I sometimes wish I could look at the world through her eyes, so I could understand what she sees and how it feels.  Remember the game Pictionary, where you have a team member draw a picture that describes the answer to the Pictionary card?  That game is crazy.  I have played before and been so incredibly far from decoding the drawing and at other times had the answer almost the second the drawing began.  I think of what it must be like for Alyssa to communicate.  I imagine her with no pen to draw the picture and no spoken words to express her desires.  This makes me realize, I am quite blessed to have the ability to write and speak.  I don’t know what I would do if those abilities went away.  I can only think how proud I am of Alyssa because she is handling her world better than I would ever be able to. 

Alyssa is genuinely happy.  In fact, her spirit is delightful.  She loves to be tickled.  She gives the best hugs.  These expressions of laughter and love don’t require words, they come from the heart.  The unspoken and most beautiful language is what we see coming from the heart.  It’s honest, natural and pure.  I am in awe at Alyssa.  As I have shared before, she is a wonderful teacher.  She illustrates what is truly important and keeps me on track.  Maybe all the words and all the communication don’t matter so much. 

Recently, Alyssa has been able to say “I need it open”.  It’s kind of funny because she says it a lot.  It has become a universal pathway for her to let me know she wants something.  It doesn't necessarily mean that the "something" will need to be "opened", per say.  It’s just the words she is able to express to let me know she wants or needs something.  It’s pretty cool.  The best part, I get it.  I hope, as the picture is becoming clearer, this new pathway leads her to opening the flood gates of language.  As I see her changes, her continued progress, I just have this feeling, from my gut, she is getting there.  What was once unspoken, will be.  For now, I am so proud to be Alyssa’s mom and to see how beautiful her heart is!  She is truly awesome!

Thank you for reading and have a great week!  Angie

Wednesday, September 21, 2011

New Job

I am excited to share, I have started working a new job.  This week is my first week... ya know, the week where you feel like you have been drenched with a fire hose?  HA! 

I plan to resume writing next week.  Until then, please know, I appreciate you, my readers, more than I can say.  If it wasn't for you, I would've lost the confidence to continue writing, a long time ago. 

I also want to tell all those who have helped us over the past few years how incredibly thankful we are.  Whether you lent an ear, contributed information, prayed for us, assisted with expenses or were simply our friends, we are ever grateful.  We absolutely couldn't have done it with you!  You rock!!!  You gave us hope, faith, confidence, relief and much, much more!  We love and thank you!!!!!

Have a great week!  Angie

Wednesday, September 14, 2011

Fit or Fits


I am thinking to myself how I feel when I am in shape, lose weight and eat healthy.  When we are in shape, we are much more likely to feel good about ourselves, feeling strong in mind, body and spirit.  Isn’t this true in all aspects of life?  As we become stronger, our passion within that strength exudes confidence, security, an overall sense of happiness and accomplishment.  Not to say, there isn’t a significant amount of work that goes into getting fit and staying fit, but maybe you could agree… no pain, no gain?

There are times I feel overwhelmed.  It might not be a particular event that acts as a catalyst to throw me off the train, but maybe an accumulation of my challenges hurls me.  Personally, I have found, I have to keep my mind in good form and in the right place.  Thankfully, I have some wonderful friends who help me with this.  When I fall into the dumps, I have to get my mind on track again, spiritually, emotionally and physically.  I believe it might even be healthy to have these set backs, to remind me, of what is really important, who I am and what I need to do, recognizing, I am called to be and do better!

As an advocate for Alyssa, I haven't sat around eating Bon Bons and feeling sorry for myself because I have a child with differences.  I had to get on the advocacy treadmill.  I worked out my brain.  I learned the laws, I went to conferences; I got my mind “fit” for advocacy.  I became enthused to make a difference for Alyssa and others.  It’s probably fair, and more honest, for me to tell you, I had my fair share of fits, but I can also say, once you begin to get in shape, the difficulty lessens.  I am still a bit chubby in some areas of advocacy, but I know if I keep working on it, I will do better.  I have ability and believe in my Alyssa.  She is my trainer, yelling for me to do ten more push ups, so I can have the strength to encourage others to advocate for their children too.

A couple of years ago, I took a position to coordinate date night opportunities for families who have children with special needs.  Mom and Dad can scoot away, while their children kick back and play.  Each year, I have students from the education department, at our local college, come to volunteer.  I am told, over and over, by the students, how wonderful these children with special needs are and how the experience changed their life, in a positive way, forever.  I sometimes wonder what I am doing, running this program, when I could certainly enjoy the break for myself, but then I realize, I am getting more fit.  My strength grows, as I am able to do something for others.  I find myself feeling excited and motivated to give the volunteers this experience and the families the break.  I am capable and God has blessed me to be strong enough to not just focus on my needs, but extend and share my strength with others.

This past weekend, I went to Telluride, CO for the Imogene Run.  I did not run the race!   Instead, I was part of the cheering squad.  My husband ran the race for the seventh time.  I am so impressed!  WOW!!  This race is 17 miles of running over a mountain, ten miles up, seven down.  I am in awe to those who train and complete this task.  OUCH!  This does not appeal to me, but watching the faces of the 1300 runners, as they came across the finish line, is incredibly inspiring.  The looks of accomplishment, maybe even anguish, pain and difficulty, reminds me how a challenge may give us fits, but in the process, a transformation happens and we can be at the top of our game, in great form, truly fit.

I am going to venture to say, it’s okay to have your fits.  I might even join you for the good ones.  On the other side of that, don’t let the fit last too long because your chub will turn into something that you won't want to see in the mirror..  Keep trying.  Keep training.  The outcomes are worth it.  Empower yourself to make a difference!!!

Thank you for reading and have a great week!  Angie

Wednesday, September 7, 2011

Precious Moments


Reflecting on when I was a child, in elementary school. I remember, each morning we would say the Pledge of Allegiance and we would have a moment of silence too.  Times have changed, but I am hoping, we don’t need a school to remind us to take those moments of silence to heart.  In just a few days, we will reach the ten year anniversary of the September 11th attacks.  This anniversary is stricken with sadness, heroism, love, loss and so much more.

I wish to take a moment of silence, say a prayer and remember how fortunate I am to have the people I have in my life and the memories of those who are not.  I count my blessings each day.  This moment of silence is a precious moment.  This is not just recognition of a catastrophic event, but a reminder of how wonderful and beautiful life is. 

God bless.  Thank you for reading and have a great week.  Angie

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

Wednesday, July 27, 2011

Challenging Success


Lately, I have been working very hard with Alyssa, to help her, become successful, with her bathroom experiences.  Let me tell you, she is successful sometimes, meaning she can go to the bathroom, but the challenge here….. She has difficulty communicating, to us, her need to go.

I think sometimes when people see an older child needing pull-ups, their natural skepticism, may kick into gear.  I can only imagine all the things others must think.  I do my best, to offer Alyssa, the most respect around this issue.  She is not in pull-ups because of anything, other than, her inability to express her wants and needs.  It’s a complex process for her to match feelings, emotions, desires and needs with the words to make it happen.  You can see her wheels turning, she’s always thinking, but sometimes it takes a long time for her to say the words, or she won’t say them at all.  I don’t want to cause frustration for her, but this is something I feel is very important for her, and for us.  We must persevere and press forward with this training.  It’s one of the hardest things we are dealing with.  I am not worried what others may think!!  I know, this is a necessity for Alyssa, to be able to be independent, in this area. 

I have a schedule I am trying to follow.  I set my alarm each night and wake up my sweet angel and take her to the bathroom.  We are successful, almost every time.  Then, I re-set my alarm for a few hours later and go again.  We have a great deal of success, most of the time, during the night.  Then, we go into the daytime hours.  Daytime is more challenging because there are so many more distractions.  Alyssa is successful often, but not as often as, I would hope for. 

Through all of this, I find myself caught between two dilemmas.  One, I am exhausted.  Second, I wonder how to get the language to coincide with the experience.  Just the other day, I took her into the bathroom and I said, “It’s time to go to the bathroom”.  She looked up at me, with sheer frustration, and she said, “It’s time to go to the bathroom, I can’t go!!”  WOW!!  I was very impressed with her language, but it came out of that frustration.  How can I get her to say, “I need to go”, at the other times, the natural times, when there isn’t frustration driving the language? 

There is also a part of me that wonders if I am doing the right thing.  I feel terrible waking her up every night, disturbing her beautiful and peaceful sleep.  But then, I find myself thinking, I have to do this, so she can get the message, it’s not optional.  If I create a pattern and enough successful experiences, maybe this will all come together? 

I hope by sharing this, I can shed a bit of light, on what some of our experiences are like.  I wish I could say how easy all of this is, but it’s not.  And, we are trying so hard.  When we fail, it may mean an entire day of laundry, which only adds to the exhaustion.  Yet, when we succeed, we are excited and accomplished.  It’s an emotional roller coaster, for sure! 

Friends have shared their view on rewarding strategies.  I haven’t been quite successful with this because I don’t know how to communicate the reward concept.  What do I say?  “Good job, here’s a lollipop.”  We don’t give Alyssa sugar because it turns her system inside out and makes her cranky.  “Good job, we’ll go to the store and get you a present.”  She doesn’t like going to the store.  Instead, I just say, “I am so proud of you” and I am!!!  Is that enough reinforcement?  I don’t know, but if anything, at the beginning of the day, or the end of it, I just want her to know, I am proud.  I am proud to be her mom, and this whole bathroom thing, is just another “thing”.  I do pray, she will become successful, in due time.  It’s the hard stuff that makes us stronger, right?  HA!  I can only be honest and say, I sometimes feel weaker. 

I appreciate you, my readers.  Thanks for being a part of our journey.  Have a great week!!  Angie

Wednesday, July 20, 2011

Summer Fun


A couple of weeks ago, Alyssa was supposed to attend a special rafting trip, through the school.  Unfortunately, we hit a bump in the road and Alyssa did not get to go.  We’ve probably all heard or used the expression, “When life gives you lemons, make lemonade”, right?  Sometimes life can offer the sweetest things, we just have to find a way to reveal them.

When I found out Alyssa wouldn’t be able to go on the rafting trip, I almost immediately decided, I would see about taking Alyssa and her friends on a private rafting excursion.  Oh for the love of lemonade!  That same day, I got a call from a friend, who called to check in on how our summer was going.  I shared with her; we were unable to attend the river trip and I was thinking of inviting Alyssa’s friends and setting something up through one of the local companies.  She said, her and her husband had a raft and would love to take Alyssa and her friends out on the river. 

You have no idea how excited I was!  I jumped on the phone and the computer and started making invitations.  We had room for up to five children, including Alyssa.  The available spots filled up FAST!  Within about an hour, we were all set up and on our way to a very special day on the river.  The beauty in this opportunity, we were able to invite a few of Alyssa’s closest friends.  I am honored to know these children and their families.  I am delighted, we were able to do something special for these kiddos because they are so nice to my angel and they deserve some summer fun!

I have posted a few pictures.  Truly heart warming!  I am thankful for this experience, the people who helped make it happen, the kids for participating, the parents for being so awesome and to the school for the original bump in the road.  This happened to work out, even better than originally planned, because Alyssa got to share this experience, with a few of her friends, who she adores!

Ample sugar for the perfect lemonade!

Thank you for reading.  Have a great day!  Angie