Tuesday, April 05, 2011

Heartfelt Post!


Out sweet little Margo has a struggle everyday of her life......trying to express her needs, wants and feelings! Although she is starting to use a few more words, I can't imagine how she feels....trapped inside with no way to tell us what is wrong or what makes her happy! I would do anything to make things better for her!!!!!!!!! We have started a trust fund to support her when we are gone, but the thought brings me to my knees:( Who will love her, who will take the time to audit her every move, to try and understand her needs, who will constantly challenge her in order to develop skills she might accomplish, who will protect her, who will make her world comfortable with all her little quirks?????? Oh my God.....it scares me to death! My daughter and X son-in-law will always be there for her, but when they go........then what????? This fear has taken much of my energy for the past 6 1/2 years (she was diagnosed at 18 months). There was an article in the "Parade" magazine in the Post Dispatch this past week-end that I can't seem to get out of my head! It was about a 21 yr. old girl who is Autistic and the fear her mother has as to what comes next????? St. Louis has very few assisted living situations for adults with Autism! Where will Margo go when my daughter and Margo's dad are too old to care for her or pass away? This is a real fear facing hundreds of families today. Maybe there is something I can do before I am too old to be able. I have the desire.....but not sure of the direction.


Sue said...

Dear Linda,

Thanks for you kind comments on my blog. I am glad Margo is enjoying her activities. Had I not been ill this last summer we were going to do horseback riding here too. They have a great program. I too worry about where my Ryan will go after I am gone. I am working on options. I saw undercover Millionaire on tv this week and they donated to a program for autistic adults in Houston. With as many autistic kids as there are out there something has to be started for them. I hope all is well with you and yours and please give Margo a special hug for me.

Nelda said...

My heart goes out to you, Linda. Surely, with the increase in Autism in the last few years, resources will develop to help these precious little ones.

Sue said...

I think you have some great ideas for helping Autistic kids and their families. You have been so dedicated to Margo since the beginning and I know how much that means to her progressing. Please keep me informed of how it goes for you as I am most interested! Your children and many grandchildren are so blessed to have you!