I am sorry I have not been around this past week.  The kids are home on spring break and my autistic son is having a very bad med reaction.  Again.  We have discontinued this med though, so once it is through his system he should be good to go once again.  I will upload my Easter cartoon tomorrow and start fresh from there.  I am not lying when I say that I have been unable to do much of anything this week except watch my son.

I bought the current People magazine and they have an article in there about a woman who was apparently killed by her severely autistic/extremely aggressive teenage son.  She was a single mom who had spent all of her time taking care of her son over the past few years.  She was lonely and overwhelmed yet she loved her son and obviously worked very hard to keep him out of an institution even when her own safety was compromised (he was over 6 ft tall and over 200 lbs.) and had attacked her before.  She talked about how she couldn’t be a friend to anyone because she physically and emotionally couldn’t be there for them.  Anyway, she didn’t show up to work one day and they police found her beaten and unconscious on her floor.  Her autistic son was downstairs and oblivious.  He was arrested and he fought this because he most likely didn’t understand what was going on.  The mother died a few days later, and the authorities are trying to figure out this boy’s competency for trial.

I cried after reading this article for many reasons.  The first reason is that I KNOW this mother’s worst nightmare just came true.  She has died and her son is facing jail or an institution and so all of her sacrifices to keep him home were in vain.  I’m sure he wonders where she is and wonders why his routines are messed up.  I’m sure he has no real idea what is going on or why he can’t go home… that poor child.  And I say this KNOWING that he most likely beat his mom to death.   He CANNOT be held responsible.  Any sane person should be able to figure that out immediately.

I am kept up at night worrying about what will happen to my own son after our death.  I’ve told God that if I have a vote, I wouldn’t mind dying with my son  and my husband in some kind of traffic accident when we’re in our seventies or eighties.  Yes, that would be horrific for the other kids to lose both parents and a sibling like that, but at least he would be cared for all of his life.  My husband and I know he will be with us forever and we accept that fact.  But I don’t know how I could do this alone.  My son is not a burden.  But… the WORRY over what will happen to him IS a burden we live with daily.

I also feel for this mom because, though I didn’t know her, I feel like I did.  Our lives are quite similar in some ways.  We were both parents to  severely autistic sons, and honestly, we are not a huge group.  95% of autistic kids I see are LIGHTYEARS ahead of my son in functioning.  It’s hard to believe that my son and those kids both fall under the same disorder.  I have found that people with higher functioning kids tend to think that autism is not THAT bad.  Oh yes, it can be challenging, but overall, with some therapy and some life changes, it’s managable.  But folks who have children on the LOWER end of functioning see things quite differently indeed.  Every day is a challenge.  Every minute.  Every second on some days.  You must be on CONSTANT alert, even when you are asleep.  Keeping that child safe or property or other people becomes your only priorities.  It’s stressful and difficult AND you are not rewarded for it in any real way.  Your autistic child doesn’t give much back in the way of feedback and other people tend to wonder out loud why you just don’t “Put him in a home and be done with it.”  As if putting your baby in an institution where there is a very REAL possibility of abuse is an easy decision.  I always say, “Could you put YOUR child in an institution?  It ain’t so easy…”

Our lives are crazy.  I realize that.  My other children don’t yet realize that, but hopefully, once they have their own children (who will hopefully be neurotypical) they will see that it’s possible to go to the movies as a family.  And to restaurants.  And on vacations.  And that you won’t have to leave early or apologize to other patrons or get in an argument with rude folks who are just not going to understand they dynamics of your family.

My life is different from this woman’s in one important way though.  I have a husband by my side helping to parent and taking some of the enormous pressure off of me.  One of us is always available to go to the other kids’ games and plays and concerts.  We manage to go to church and to have some semblence of lives because we have each other and I am grateful for that.  Soooo many marriages fall apart when there is an extremely disabled child in the mix, and that means that there are a lot of single parents who are really facing some hardships.

I don’t know what my point really is except that I hope folks in the community will start to seek out these families and see what they can do to help out.  I know how alone they feel.  I know how difficult it can be to face another day, another week, a LIFETIME with no breaks.  Don’t offer to watch the child because the parents are not going to let you do it.  They will (rightly) feel that you will NOT be able to handle the child, no matter your good intentions or skill level.  No, instead I’d like to encourage people to befriend these folks.  Bring over a meal.  Provide some company.  Invite them places at times when they can go.  When the child is at school, or during respite breaks.   Be comfortable around them even if their child goes off in a tantrum.  Keep talking to them on the phone (if they seem like they want to keep talking) even if you can barely understand them over the screaming in the background.  Conversely, don’t be offended if they have to suddenly get off the phone and can’t call you back for hours. Don’t let yourself get freaked out.  These kids are JUST kids, even if they look and or act quite different from your own.  That is one reason why I love my friends so much, Kate in particular.  She is NOT freaked out by my son, nor does she judge us and these are just HUGE blessings.

I just know there are parents out there struggling with what seems like a hopeless situation who are so very lonely.

… I just wanted to make people aware of that fact.

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