Construction Zones

I took a bit of a break from writing, these last few months.  I miss it.  I miss you, my readers, and appreciate all of you, including those who still check in, from time to time, to see if I have posted anything new.  Today, I want to share a bit of Alyssa's success with you.  As always, she continues to make us the most proud parents.  She is amazing.

Alyssa communicates very well, but often, more through gestures, than words.  I have this feeling, when you talk to her, she takes it all in, but when she wants to reply, her mind gets stuck in a construction zone filled with detours and flagmen.  I personally can say, I take my communication for granted.  It's easy for me.  My mind is going a mile a minute, without the littlest delay, not even a speed bump.  We have tried many techniques to bring forward Alyssa's communication.  We model the language for her, by having her look at our mouths, as we pronounce each syllable.  We use a dry erase board to write down what we think she wants to say, giving her the language, and we have a "new" technique; I will get to in a minute.

Interestingly, the dry erase board has been a strong point of success for us.  Alyssa will come to me, lead me to the kitchen cabinet and throw my hand towards a food item she wants.  Her favorite food items are spread around the kitchen, so we know what she is going for.  If she leads me to the cabinet by the fridge, she wants crackers.  The cabinet by the door has raisins.  The refrigerator drawer has cheese.  I am sure you get the picture!  Alyssa will lead me to what she is seeking and throw my hand towards the item.  I grab the dry erase and write, "I want crackers".  I put my pointer finger on each word and model the sentence for her 3 to 4 times.  Then, I put her pointer finger on the "I" and tell her it's her turn.  She will then say, "I want crackers".  This can feel like a lot of effort, to get to the language that is, but it's worth it.  We can see, she has the language, she just needs a sign on the road to exit and avoid the construction zone ahead, where the language is lost.  We go through several of these efforts every day.  The other cool thing about the dry erase board, it teaches Alyssa to recognize words, in print.  Yes!!  She has sight words and is showing evidence of reading.  All of this is very exciting.  We find encouragement and strength from her successes.  It's truly awesome.

On to her newest communication technique...  Recently, I noticed Alyssa sounding out words into her hand.  She has her hand wrapped into a fist, like a microphone.  She will make sounds to words and feel the sounds and vibrations on her skin.  One day, I thought I would use my hand as a microphone.  I said something into my microphone, then placed my fist in front of her mouth.  She said what I said.  Wow!  So, I said something else, presented the hand off of the microphone and there were her words, just as quick as could be and clear as day.  Wow!  I like this new game, so I try a few more times and what happens.... she says everything I say.  It is hard for me to express the level of my excitement, without coming out of my chair and dancing about.  This is fabulous.  Maybe, just maybe, this will help her start accessing her language more freely.  I am jumping up and down in my boots and so proud of her newest accomplishment.  Woohoo.  Go Alyssa.  Is this her exit from that construction zone?  

By Alyssa having access to her words more freely, I can see her engaging in her peer group more and more.  You can see her excitement, she's beaming.  To see the enthusiasm in her own successes fills our hearts with joy.  I feel like all the work we have done, for her to be included in a general ed classroom, has been the absolute RIGHT choice.  She loves school and her classmates.  She has self worth.  She has friends.  She is learning!  All wonderful things, leading her down a path, a future, of possibilities. 

Sometimes, the simplest things, and ideas, lead us to breakthrough successes.  My hat is off to Alyssa as she continues to exhibit her abilities.  Alyssa continues to inspire us with her knowledge, gift of love, curiosity, efforts, and everything else that makes her who she is.  She is the light of our life!

Thank you for reading and have a great week.  Angie

Good Changes

Things have not quite been the same, over these last couple of months, but in my heart I know, they are good, maybe working towards being even better than before!

At first, when I came home from the hospital, Alyssa seemed a bit mad at me for my month away.  My first interaction with her was at school.  I joined my mother-in-law to pick Alyssa up from school at the end of the day.  We had ample time.  I couldn't wait for the bell, so I went into the school to look for Alyssa.  There she was, strolling down the hallway, tight to the wall, feeling any and all textures, as she passed them by.  I went up to her, knelt before her and said, “Hi Alyssa, its mommy.”  She looked at me and in a real deep tone said, “hi mommy”.  Her grumble told me, I was in big trouble!  She gave me a hug and went on her way.  That night, she was wound up, yet distant, and in her own world.  It took about three days before she started getting close to me.  It took even longer for the special moments, like sitting on the couch together. 

Over the holiday break from school, when Alyssa did not have her friends to engage with, I noticed she seemed different.  I was, and still am, on driving restriction, so over the two week break I wasn’t able to take her anywhere.  That time was also a time of needed rest and recovery for me, so we didn’t have friends over to our house either.  I felt bad we didn’t do or plan more entertainment during that time, but realized certain limitations applied and those limitations would be temporary. 

Here we are, the end of January, Alyssa had her first opportunity to go to a friend’s house, after school yesterday.  Last night, there was a change, a good change.  Alyssa seemed genuinely happy last night.  She giggled, smiled and was engaged with both mommy and daddy.  Her hour with her friend, made a difference.  It’s kind of funny because Alyssa and her friend did not sit down and play together, per say.  Alyssa roamed the environment and explored all the different toys.  She went from room to room and scoured each location for desirable items.  She found many things, including a necklace that caught her eye and entertained her for a long time.  It was really neat because you could see she was enjoying herself, just by being exposed to all the new and different things.  I find it interesting how just being in a different environment made such a difference for her.  I can only hope we get more of those opportunities, to intrigue and inspire something new, something different.  

Over these next months, I hope we can reach out more, embracing change, while seeking new good experiences.  For me, to see Alyssa happy is the best experience ever.  And, I have been graced with more time and the chance to see her happiness.  This is absolutely beautiful!  I thank Alyssa’s friend for making it happen this time!  I look forward to the next.       

Thank you for reading and have a great week!  Angie

Painful Layers

As you may know, I had a brain aneurism rupture in November 2011.  I haven’t been writing much while in recovery.  My heart wants to share so much, but my mind has difficulty putting together what I might write to you.

I find myself feeling incredibly fortunate, yet scared and confused.  There is a pain in my body that reminds me, I was in the hospital and had brain surgery, but my real pain is found in my emotional places. 

Returning from this experience, it took some time for Alyssa to reconnect with me.  I feel so bad; there hasn’t been a way to explain all of this to her.  I wish I could comfort her and she could understand why I was gone for a month and why I have limitations with her now.  There are times, she will give me a hug and I become emotionally overwhelmed.  My emotions play tricks on me and I can fall into a feeling of what it might be like to not be with her.  Then, I fall apart.  I realize what a gift life is.  Not that I didn’t before, but now, there is a side of me, emotionally feeling the pain, of what it would be like to lose the opportunity to be with those I love. 

I think back to the evening this all started.  There have been so many of you have asked about my experience.  I thought I would share it with you today.  It was Wednesday, November 9^th.  I went to take Alyssa upstairs to get her ready for bed.  At the bottom of our stairs, she reached up to be carried up the stairs.  Loving this special moment, I carried her, like I did most nights.  As I approached the top steps, I felt “odd”.  I knew something was significantly wrong.  There was no denying the feeling; I knew I was going to need medical attention.  I walked Alyssa to the bedroom, quickly readied her for bed.  I began to lose my balance, but used my arm like a kickstand to hold myself up.  It’s a bit foggy if I put Alyssa in bed or if my husband did.  I remember feeling ill and sitting down on the floor.  I yelled across the house to my husband to come quickly.  As he arrived, everything was very confusing.  Had I fallen?  What was wrong?  He led me down the stairs on my request.  I called our neighbors to see if they could come over, as we would need to go to the hospital and have someone at the house for Alyssa.  I could hear my husband calling the paramedics.  I leaned over the kitchen sink and became very sick.  A few moments into vomiting, my neck stiffened and I had a wall of shooting pains from the base of my neck, up and over to the front of my forehead.  This pain, this awful pain, was worse than anything I have ever felt before.  Woosh, my head was engulfed… a migraine would be an understatement as to the intensity of the pain.  It was more like an explosion inside my skull.  I remember a paramedic arriving and standing behind me offering me relaxation because he had medication to offer.  Being placed into the ambulance was my last memory for the next 19 days. 

Looking back and thinking about this whole experience, I would have thought the woosh, the shooting pains, were the worse thing I could ever feel, but I was wrong.  Waking up from this experience and knowing I could have died and lost the opportunity to be with all of you, my friends, my family, my sweet Alyssa… oh how that pains me more than anything.  I believe I can rejoice in my existence!!!  Yet, I have to be honest, I am not relaxed about the rejoicing, I am still scared, frankly scared.  I am sure this experience is like that onion, peeling off the layers, until the fears are all gone.  I trust in God and believe there is more I haven’t learned from this yet, so I will do my best to let go for now and try to celebrate, as I have every reason to!!!  I am trying to enter each day, one day at a time and with an open heart and mind.  And, I find myself feeling incredibly fortunate to have Alyssa’s smiles.  She guides me into the celebration!

I don’t know where we would be without all the wonderful people in our lives that have been helping us through this time.  I can only tell you, I am more appreciative than ever.  I do not have words to express the mountain of our gratitude, but I want everyone to know, your part, no matter how big or small, has been huge to us.  Thank you! 

As always, thank you for reading and have a GREAT week!!!  Much love, Angie

Happy New Year

I will be the first to say, "yes it is".  This is a very happy new year for me.  I am incredibly fortunate, blessed and thrilled to be entering into 2012!!   

I am not one to make resolutions at the beginning of each year, rather I like to have ongoing goals throughout the year.  I will share, my current goal is to do my best to take it easy and be patient with my recovery from the brain aneurism rupture.  I cherish every moment with my family and friends, more than ever!!  Again, I feel so blessed!

For those who have been reading my blog for some time, you must know, Alyssa is our "everything".  She is an angel.  To start off the new year, I thought I would share some new pictures taken just last week by our talented friend, Kara, from Kara Wright Photography. 

I am full of thanks to all of our wonderful friends and family who have been a part of my recovery.  Thank you!  THANK YOU!!  Much love, Angie 

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

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

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