More Website Templates @ TemplateMonster.com - February04, 2013!

Can’t stop, won’t stop!

It just keeps marching on: days, months, years.  I seem to come back to this place mentally at the beginning of each school year more so than the calendar year.  Birthdays are triggers, too.  So here we are: 12 years old and starting 5th grade (age-wise, not academically).  While homeschooling has had many positives for Kimberly, I question it every year...this one is no different.  A few months ago I was convinced that to get where we needed to be would require enrolling her into a private special-needs based school.  I researched (again), visited (again), and came back to that familiar place where I acknowledge that there is in fact, no silver bullet.
Armed, once again, with this knowledge I decided to up my game at home.  We have brought in a Speech Therapist (who last worked with Kimberly when she was barely (if at all) verbal, at around 3 years old.  She is wonderful and her assessments are helping me get a better picture of areas we need to focus on.  More than anything though, she brings new ideas, fresh energy, and you know, some things are just better done by someone other than Momma!  This therapist is helping us find a good Occupational Therapist as well, to focus on a BIG area of need: life skills.
Time just keeps marching on and around the corner we are facing the unthinkable scenarios of us, as parents, possibly being unavailable to care for Kimberly on the level we do now and her aging out of public assistance (as school provides).  Such is the reality (along with puberty, as mentioned in my previous post) that families of autistic children (soon to be adults) must face.  I read in an article that autism is typically thought of as a "childhood condition"....wha? how? huh??  How does a child with autism NOT become an adult with autism?  Did I miss something along the way?  Whatever.  Clearly, that author does not have a clue.
Anyway, as I am quickly discovering, there is no "typical" path for this transition to supervised group homes or other scenarios if family is unavailable/unwilling/unable to continue the full-time support.  This should not be surprising, it falls in line with the lack of effective and accessible levels of treatment/care/education paths for the school age children.  Families are doing their best to figure it out by getting creative, dealing with limitations as best they can, and/or taking advantage of the few good options that have appeared in various locations around the country.  It is practically a solution-less problem, but as I have recently discussed with other mom's of special needs children/teens...one way or another we will figure it out.  We will persevere, because we must...no other option exists.
More information on options people are exploring for this very REAL issue:
https://www.sciencedaily.com/releases/2016/12/161220104031.htm
https://www.autism.com/editorial_aging
Aging Out: When Kids With Autism Grow Up
 

Related Posts

Comments

  1. Gosh Dani….200,000 of these kids reaching age 21 in the next 5 years. There has got to be more services provided for these young people. I had no idea. Thank you for sharing this and spreading awareness! ❤️

    • I bet it is actually more than that…not 100% sure how that number was generated…seems low though. Many families are affected and there are no easy decisions regarding long-term/adult options – especially if the parents are no longer able/alive…
      XO-
      D

Leave a reply