“If you can’t say something nice…”

It’s been quite a while since I have posted.  I have had lots of thoughts about posts, and even a few times when I could sit down to write.

What I have not had is something “nice”  to say.

I write about my life because I want to convey a message of hope, joy, love and laughs in the midst of challenges.  I certainly have lived with that intention, but the truth is:  I’m not really laughing, or if I am, it is at something too dark to share with the world.

We have raised a child with”multiple disabilities” for nearly 18 years.  We are trying to understand the process by which a man-like boy is all of a sudden an “adult,”  but not able to take on adult responsibilities.  The fact is, he probably never will be completely independent, at least we cannot imagine such a thing from this vantage.

There is a legal process parents must go through (and pay the court) to apply to be the guardians of their erstwhile  (under 18) child.  I feel this is an important step to take, to protect Amsden from someone who might try to exercise undue influence on him, and influence his important life decisions, take his money, or abuse him in some way.

At the same time, our boy is aware enough to want some independence from the folks.  As with many teens, this is a gut-wrenching tight rope walk.  When he gets money, he goes to the dollar store or Wal-Mart and buys what we like to call “cheap plastic crap.”  After a few days, he is sick of his toy boat or car or light sabre, and either cuts it into shreds, throws it away, or tries to put it into the Good Will bag, because he is done with it.

But before long, he needs another fix, and more money, and some more cheap plastic, and the beat goes on.

Or he wants to eat something.  But he eats too much, and not the right things, and YOU try to tell a 200 pound kid he can’t have 5 hotdogs for snack, and it gets crazy at my house.

But this has been regular fare for years.  This year, it got different.  He started doing and saying things that weren’t just weird, or mildly violent, they were scary.  We-hid-all-the-knives scary.

So we called the Doc and we adjusted the meds, and waited.  And he gained more weight (a side effect of the meds)  and got mean and manipulative.  So we called the Doc and talked about a hospital stay to evaluate the meds in a safe environment.

And we upped the meds, and waited to see what would happen.  And he gained weight and finally, after 3 months of crazy, he went back to baseline.  (Think cheap plastic crap.)  So we were ready to drop the hospital thing, cuz it’s a real drag.  We have done it a couple of times before.

But all the docs and social workers and friends and family we talked to said we should stay on the magic waiting list, because the people at the hospital can help get him on better drugs so he is not eating himself to death. And they can help him to be more functional and happy.

But we have been on the waiting list for over 2 months, with another month expected.  So we upped the meds again. With the summer lack of routine, he is ramping up the crazy vibe.

All this to say:  I am not giving up.  I am grateful for the help and support I DO have. I have hope that we will figure this out.  I love my son, and wouldn’t change who he is for anything.  I have faith that God will use this experience to make me into a wiser, kinder person.  I am thankful for the chance to share.

Next time I will try to give you some lighter fare, and not wait so long to do it.

Joy Hayes

About Joy Hayes

I am a married full-time mother of three children, 12-18 years old. Each of my kids has a learning/developmental disability or autism. I have a "side-ways" sense of humor, which comes from a lifetime of caring for special people. I love to learn and live to read and write, therefore I am the best student I have had the pleasure to work with.