Summertime, Summertime, Summertime

This is my first post in a while due to the recent death of my beloved Dad and then following immediately on its heels was the start of summer.  Wow, it was quite the emotional and exhausting Spring.

I think I am just getting my “sea-legs” for Summer.   We started the summer with a biking camp for Elizabeth.  It was from the “iCan Shine” company.  That was five days of watching Elizabeth go round and round in a gym on a special bike.  The last day was GREAT, she went outside on her own bike and RODE IT.  I was watching her circle the gym for an hour and 15 minutes each day thinking so many things.  Perhaps you can relate?

1. I AM SO PROUD OF HER –  I think this so often, but then once in a while I REALLY think it and this was one of those times.  Imagine having to work so hard each day for all the things you want to do and still smiling and laughing.  Elizabeth is a very pleasant and warm young lady.  I am not so sure, I could be that person if I had to face all she does each day.

2. I WANT THE WORLD FOR HER-  Ever since Elizabeth was a young child, I hoped the world would open up for her, that she would have all the opportunities open to her, that she could follow her interests  and be given every chance possible.  Our children work so hard at just plain life, that to be denied any opportunity would be heartbreaking.

3. I WANT THE WORLD TO UNDERSTAND HER-  After having advocated for Elizabeth for so long, I truly want her disorders to be understood and therefore SHE would be understood  I do not mind having to explain how Elizabeth “works” to any and all who ask or are going to work with her, but to have them know SOMETHING about her disorders would be fantastic.  Just think how nice that would feel to go into a meeting/classroom and be met with questions about how your child shows signs of the disorder as opposed to ” I am sorry, but WHAT does you child have?”

4. I PRAY FOR PATIENCE AND CLARITY OF THOUGHT-  There are times when I think, “We have been at this marathon for over 16 years”  I know I want the best for her but like all parents of special needs children know, patience can wear thin.  I pray for the clarity to know when I need a break, a moment, a prayer.  I pray I can close my mouth when I want to correct, I pray I can open it when I want to compliment and I pray I know when those times are.

5.  I LOVE THIS CHILD SO MUCH- There she was, smiling on that bike, helmet on, squishing down that mass of curls and she was happy.  I would move any mountain for her….I believe in this child.  Period.  And as she was peddling away on this bike outside, I look up in the sky to see the beautiful eagle soaring above us.  The same eagle that has been above us since my Dad died.  We see if often and regularly.  I feel it is my Dad telling us he is okay and that he is with us.  My Dad had a very special place in his heart for Elizabeth.  He called her his “penny from heaven”  She remembers this with a smile.

So I looked up in the sky to see this eagle….I was happy to see it there.   “See Dad” I thought.  “She’s doing pretty well, help us keep and eye on her”

We ended camp that day, and began the next part of summer.  I am happy to say Elizabeth is enjoying the relaxed pace of summer and is laughing and happy,.

I am getting there…..I know we have an amazing guardian angel to watch over us.

Wishing you all a peaceful week.






Lessons From A Nursing Home

I never really thought about it, the fact that each moment you can walk out of a door to the outside should be regarded as a great moment.  Or the chance you have to sit outside your home and watch the trees blow in the wind.  Or the fact that when you get to pick what you want for dinner and feed yourself you should rejoice.   I never thought about these things until my family was brought face to face with the world of a nursing home.

As many know who follow my Facebook, my beloved Dad recently passed away after being in the nursing home for over three years.  Dad was an amazing man. Full of love and wisdom, hugs and humor.  To watch his decline and spend his last days holding his hand have left me quite emotional and if I am truthful, quite pensive.  I prayed for his peace, I prayed for him to go to God, and now that he has, we are left…thinking.

I can remember one particular Sunday, after being there at around 9:00 to noon to help my mom.  I was headed home, I rounded the corner to get to the door and I looked at a little older gentleman in a wheelchair.  He was sitting there staring out the door…just staring.  I said” good afternoon” to him and also “excuse me”  as I went around his chair and pushed open the first of two doors to get out.  I was greeted by fresh, cold air (it was Winter).  But that air that felt too cold just the other day, felt fantastic at that moment.  It was that one moment, that one second in my life I will alway remember.  I was alive, able to move, able to go where I wanted.The man in the wheelchair could only look.  This moment has been the catalyst to so many thoughts over the three years. Continue reading

My First Product Review- The Master Opener from Kuhn Rikon

We bought this opener in December of 2013, I had had such a hard time getting Elizabeth to open cans for our cooking time or for her snacks ( she loves tomato soup).  I saw this and thought “Yes, something that will keep her hands safe”

She and I talked about how to use it and worked on her hand grip to get the right angle to get the hook under the can tab.  We practiced and practiced and then she GOT IT!   Lid off….soup is on!

We have worked on the other types of cans and bottles it opens and it really does help.

I advise watching them as they do this, so as to avoid a cut or other mishap.

For us, with Elizabeth’s dyspraxia, it is all about practice and practice.  It was hard for Elizabeth to orient herself as to which way to hold the opener, so I drew a smile face of the side of the tab opener that would be facing her when in use.  I told her to always look at the smile face.  This helped her to process which way to hold the handle and aided in her success.

I hope this product will help your child be just that much more independent.  Good luck!!