Lately, there are heavy things weighing on my mind.  I’m sure most parents of Special-needs children feel this same weight.  What will happen when I am gone?  Where will my child go, and who will take care of her?  In our state, I have not found many places that I find suitable for someone like Phoebe.  Phoebe will not be able to live on her own.  She will need assistance the rest of her life, and I won’t be here to do that.  There are places for developmentally disabled adults, but I am not sure they are a good fit for her.  Phoebe has made great strides in the last year, and is becoming more independent, but she will always need guidance.  In the near future, finding her a SAFE, suitable place to live, or a livable situation is my new mission.  I won’t live forever, and I need to get a plan in place.

I am coming up on 50-years-old.  (gulp)  Twenty-years of taking care of a child/adult with a disability is taking its toll.  I am exhausted most of the time.  I work, take care of her needs, my needs, and my sons needs (and he is a huge help).  I have leaned on many people over the years to help me, but for the most part this has been a 24/7 job. I have missed out on things, and sacrificed a lot to do this job.  I wouldn’t change it, but there comes a time when putting myself first should happen.  I am not sure it ever will, but I think I have to give it a try.  I have aspirations for my career, my life, and most of those are on hold as I figure out all of this.  I appreciate the small breaks I get, and they rejuvenate me in small doses.  (I have to thank those that help me do so)  Phoebe deserves a life of happiness, and independence. I’m not sure living with her mother for the rest of her life, would give her that.  She wants and deserves typical friendships, relationships, and fun.  Don’t we all?

We have a long way to go, but I hope to make safe housing for people like Phoebe.  People who deserve a life of their own, the help they need, and the friendships they so desperately want.  A place that would teach her about nutrition and keep her safe, and healthy.  The research starts now, and I am working on a plan.  With autism rates at 1 in 59 children in the U.S., this is going to become a huge issue for lots of families.  (I’m sure it already is!) These children grow up, and then what?

I can’t be the only parent thinking of this.  If you want to talk, or get involved…please let me know.  I can’t do this alone.   I’m ready to take on this mission.  Phoebe deserves that. (And, so do I)