Tuesday, July 17, 2012

Not my happiest post......

Those that know me also know that we have an Autistic granddaughter.  We have been hopeful for many years that she would someday speak and be able to make her way in school and in society.  Well, we don't have any new prognosis, but Margo seems to have declined in her behavior and learning over the last 9 months.  At school they are not seeing her progress in any of her activities and she has started becoming a decipline problem.  Although there are only 3 children in her class, she needs constant attention for fear of her getting into something. 
Last Christmas she had a melt down and started hitting her head.  She continued this behavior for several days until we discovered that she stopped when we put a bike helmet on her.  From there we went to a ball cap, more presentable in public and cooler as well.  Well, that worked for awhile, but eventually she was back to taking it off and hitting again.  Along with the hitting came a compulsion to cover her hands.  We sort of solved that problem (with schools help) by cutting off the fingers of gloves and letting her wear the remaining part to cover her hands.  Again, worked for awhile....until she started needing a blanket to hang over her shoulders.  At first I thought she needed the weight on her shoulders and I made her some fat snakes filled with dried beans.  That also worked for a short time!  Pretty soon she was wearing the hat, helmet over the hat, snake on her shoulders and blanket over that.  Let's not forget the gloves to cover her hands!  You can imagine what bath time was like......not fun:(
With all of these phobias everything has it own sets of problems.  For instance....meal time.  With the gloves getting into the food and the strap from her helmet getting constantly wet, she has developed a rash on her face and neck.  We can't get her to leave the helmet off long enough to put cream on it much less let it dry out and get better:( 
Margo is SOOOOO frustrated so much of the time, she yells.  These yells are her way of saying....I am mad!  I want something &^%^%#$@#!  We all have learned to ignor it when it happens at her house or ours......but taking her in public does present a problem.  She is quite aware of everyting you ask her or tell her.  She has let us know that by her actions.  If she wants something badly enough she will follow through with instructions given her... right away!  A good example came this morning when I had asked her repeatedly to get her shoes on so that I could take her to school.  Once I told her we would stop and get a dounut on the way, she headed right for the shoes and attempted to get them on.
Along with all these other problems, she still wets the bed and poops in her pants.  Because of her age and size this has really presented a major problem!  I guess that is obvious....and I don't need to say any more!
I do want to add that none of that ever....I repeat ever....happens at school!  We are beginning to think that it is on purpose for some reason......still haven't figured that on out yet!
I worry about her constantly!!!!!!!  I worry about her mom and how she has to deal with this on a daily basis! 
I am writing all this because it has been penned up inside for a long time, and I never like to write about unhappy things on my blog.  Since it doesn't appear that very many read this blog, I have found this cathartic to get it out and on paper (so to speak).  If you are one that reads this ramble I simply as you to pray for Margo and her immediate family.  So much stress for them all the time!
With all that being said, I am still thrilled when she comes over to visit or stay the night.  I would do anything in the world to make her life more enjoyable!  That silly smile and giggle get me every time:D

4 comments:

♥ Sonny ♥ said...

Prayers for all of you. I dont have the words to ease the pain you must feel about all this but I am glad you choose to write about it and I hope it brings you a little relief. Goodness knows you deserve it.

please know you can email me anytime. to talk or vent and there would never ever be any judgement nor would what you say go any further. everyone needs a place to feel safe to vent.

Sonny

Rose Garden Romantic said...

I'm so sorry! I have two boys who have mild Aspergers which is hard enough, I can't imagine dealing with all that dear sweet Margot and your family have to! You are all in my prayers!
Hugs,
Michelle

Rose Garden Romantic said...

p.s. As Sonny also said, please feel free to e-mail me anytime for support and understanding.
xoxo

Sandy Graeser Haynes said...

Love you to pieces, and know HOW hard you try to work with her, and make her life better..... We can hope that will the higher incidence of autism in society, that the public will become more involved, and give more support and money for the research that will help these families. I love Margo, and hope that someday they will find the 'key' to unlock the secret to her illness. With all the help for Breast Cancer, etc., there IS money out there ! Don't lose hope for her future..... I know it is hard. Love, love, love to you, Rogie, Care Bear, Jim and the Milly girl !