Monday, August 18, 2014

On a more personal note

I really debated with myself about writing such a personal post, but if we are really going to get to know each other, you need to know a little about my life.

Our whole town is buzzing these days with all the back to school activities going on - kids getting supplies and new clothes, early morning band practice (that I can hear in my backyard!) college kids moving into the dorms - the whole city is in a state of excitement!  And it is an exciting time, especially if you have kids returning to school after a long, hot summer.

But this year is the first time in 14 years that our son Brian will not be going back to school.  When he turned 22 this past March it made him ineligible for public school any longer.  It has been determined that no matter how disabled a child is, they should be ready for the real world by the age of 22.  Realistically, Brian will never be ready for the real world, on his own.   He could stay in public school til he was 62, and he would still be in need of constant care and attention.  He would still be as autistic then as he is now. 
Here's Brian at his graduation with Madi his best friend
It is because of his autism that Brian doesn't understand why he isn't back in school. All he really understands is that something has changed and life as he knows it is not the same.  We are one of the lucky families though because we have a program for Brian to enter into now that he's out of school.  It's possible that he may even end up liking this program as much as he did school, but that will take time.  This new program will be very different in that he won't have cute girls from regular ed wanting to work with him and he won't have his beloved aide Gina to greet him each day. He won't get to ride the bus every day or eat lunch in the cafeteria.  Some one else will take his spot at Big Lot's and his partner in PE will start working with another special ed kid.  No more visits to the attendance office to deliver daily reports and work on social skills, and no more long boring meetings going over IEP goals (but being the center of attention wasn't so bad!).  These things may not sound like much to us, but this has been Brian's whole life since he was 6.  It's all he has ever known.

Even Christmas Break could be stressful
 I wish I could make time stand still for Brian so he doesn't have to go through this painful transition, but that's really not possible or beneficial.  Change is going to always be here, and though change is particularly hard for people with autism we cannot protect them from it.  So pretty soon I will go to pick Brian up for Friday night hamburgers and the staff will tell me what a rough week he had and I'll notice the dark circles under his eyes and the broken blood vessels on his cheeks where he slapped himself repeatedly out of frustration.  We will try like crazy to keep things normal when he's home visiting, without really knowing what normal is for our family.  Our new normal, where Brian and his brothers have all moved away and it's hard to get everybody together at one time.  I will let him listen to music as long as he likes and we'll eat popcorn all afternoon.  And when he's ready to go back to his home, he will touch my arm and point to the door, sign language for 'I want to go home now'. 
Popcorn even at his brother's wedding!
Raising a child with any disability is difficult; it puts a lot of stress on a family.  When Brian was very young  I was encouraged by others that things would get better as he grew older.  And I guess I agree with that in some ways.  It's easier to make it through the day without caring for (essentially) a child in an adult body, one that doesn't speak, has major meltdowns multiple times a day, is self abusive and destructive to property, and who's mood shifts quicker than the weather here in north Texas.  In those ways things are better.  But under the surface we still stress over how he's doing and what his needs are, pray constantly for him and his future, and, we still grieve for the person he would have been without autism.

Thank you to all the parents, students and educators who have worked with Brian over the years.  He has achieved more than we ever thought possible.


  1. As I read your post I was eating popcorn! lol...thanks for sharing your heart, life has so many challenges, so thankful for a God who loves each one of us. And I'm sure you hold on to the days to come in heaven when all will be made right, what a day that will be! Saying a prayer for your family for the transition time. Tina Crawford

  2. Thanks Tina, your prayers are always welcome! I hope everyone is well in your family and it's really good to hear from you:)