Wednesday, October 26, 2011


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