Tuesday, July 14, 2015

Ummmm...You don't know what it's like.

My husband and I have two sons, J and S.  J will be a junior in high school and is starting to look at colleges.  S graduated last month.  He starts classes at the local community college next month.   He has paid his tuition.  He has purchased his books.  He has his bag for school.  He has attended the New Student Experience.  We have transportation figured out (kind of).

Our son has multiple disabilities.  He has Cerebral Palsy which impacts gross and fine motor skills and his speech.  He has ADD.  Last year he was labeled with Low Vision.  He doesn't drive.

We have been working with our son for years to get him to achieve his goal of attending college. A few years ago we created the "Four Pillars of Life", listing skills he would need to be independent and successful.  We made sure he had the proper courses in high school to prepare him for college.  We have called various agencies and talked to numerous professionals to make sure we were on the right path of finding appropriate services and getting them in place prior to this point.   Our son works with two Vocational Rehab counselors from two different agencies. He has Assistive Technology people helping him through three different organizations.

Even though we have been very proactive in this whole process, we are still sprinting through this summer trying to finalize everything.  We are taking S to meet with someone in an office somewhere at least once a week.  I think he has been at the community college every week this summer.  He is headed over there again tomorrow.  

A recent conversation
The other day someone we know was asking S about his plans.  He told her that he was attending community college this fall working toward an Associate of Arts degree with a History focus. He intends to transfer to a 4 year school when he is finished at the community college.

This woman came up to me afterwards and said that S had been telling her his plans. I said we had been crazy busy this summer trying to get everything into place for him.

Her:  "Oh, I know what it's like."
Me:  Ummmm........(killing time....dramatic effect....trying to figure out how to respond)....

[What I wanted to say:  You do know what it's like to send your son off to college but you have NO IDEA what it is like for us.  You don't know what we are going through to send our son to a school 20 minutes down the road.  You didn't have to come up with a game plan more than four years ago just to try to get services in place that we are still working through, and S got a new label and a new organization thrown in his lap last year.  You haven't had to deal with all of these agencies that are known by a group of letters.  Your son doesn't have to keep a binder full of paperwork from all of these organizations in addition to doing the required stuff for college.]

What I said:  There is more involved than just sending him off to college.
Her:  Oh, I'm sure you have to do a little more.

Yup!  That's right.  A little more....

You will find me on the couch with chocolate (and possibly wine) because, if you are reading this, you know what it's like.


  1. I am an autistic and I also have inattentive ADHD (formerly ADD). This daunting thing called college is closer than it appears.

    1. It is coming soon. We are thankful for all of the support services that the school has for our son. Good luck to you!

  2. 'A little more'? Bimey. I can almost understand someone saying 'I know what it's like' just for something to say, but when you're called on it then coming up with that is just unbelievable. Definitely chocolate worthy. Good luck with your son's college plans.

    1. Thanks! My family laughed when I was sharing this story with them. Sometimes laughter is the best medicine (that and chocolate).

  3. Don't you just hate that?!!! One time we bumped into an old acquaintance and she asked me how Beth was doing, I of course answered that she was doing as well as could be expected for someone who has uncontrolled seizures. Her response to that was, "Well, there's medication for that!" No... really? I've never even thought of taking her to a neurologist to see if a medication would stop those pesky debilitating seizures!!! I hope next time you give it her straight!!!

    1. We could write a blog post just listing comments like that. It's always entertaining. My husband figured maybe it's because we just make it look so easy (and then we all laughed).