I am supposed to be packing my workshop suitcase right now.But I owe you a post or two, don't I?
This is my family. Katie on the left, her boyfriend Nathan's three children, Nathan....and then my son Kevin on the right.
Tonight, I picked up Kevin from his group home and drove to McDonald's where we met with Katie, Nathan and his kids. Kevin loves to watch the kids play in the playground area, and he can eat McDonald's burgers (he can't chew most foods) so it's his favorite place. He had a good time tonight, laughing at the kids as they jumped and twirled and slid down the slide. And after a couple of hours of hanging out, I took him back home.
That's the part I don't like. He maybe hangs his head a little as I get ready to leave. Or does he? Am I just so afraid that he might be sad that I imagine it? Am I just so afraid that he might be sad that I gloss over a truly hanging head, imagining that I am just imagining it?
There is no end to guilt when you have an autistic child. Kevin is 22. He's never spoken a word. He's still in diapers. He laughs when nothing is funny and cries when nothing is hurting. He giggles when you cry. He finds other people's sneezes knee-slappingly funny. He watches Barney & Seseme Street....he's been watching the same videos for 17 years. He bites his fingers - they are scarred with swollen callouses. He wouldn't see anything wrong with walking around naked, but if you happen to run out of diapers and you just have to put his pants back on without a diaper, he'll fight you tooth and nail. If there is no diaper, there will be no pants.
You're liable to find him in the morning with a different pair of pajamas on then when he went to bed - and usually inside out. I even went in one morning to wake him for school years ago, only to find him fast asleep with his tennis shoes on. At 3, he was a pro at assembling his toys into groups - trucks in one pile, cars in another, Seseme Street figurines in a third. At 22, he is a pro at stacking piles of videos, then re-stacking them (loudly) and re-stacking them, and re-stacking them, and re-stacking them. Hours on end of rearranging stacks of videos.
There is no end to guilt when you have an autistic child. No end. He shouldn't just be watching Barney videos. But he loves Barney videos. I should have done more. I couldn't do more. I should have given him every minute. I couldn't give him every minute. I should talk to him more. It's too hard to talk more to someone who doesn't seem to hear you and who never, ever answers. He should be at home with me. He can't be at home with me. But he should. But he can't.
Is he cold? Should I put a sweatshirt on him? Is he hot? Should I take off his sweatshirt? Should I give him the blueberry yogurt or the lemon yogurt? Would he like a chocolate milkshake more than a strawberry one? Are two burgers enough? I wonder if I should get him a cookie? How can I ever know? What's the right answer? How is it that it always comes down to me feeling like somehow I should know?
Maybe if I were just a little bit better at all of this, I'd know whether he prefers chunky peanut butter over creamy....
He's in a fantastic group home. It's a 3-bedroom apt, and he shares it with two other non-verbal residents. The caregivers are kind, and the supervisor is amazing. There is an aquarium in the living room, a Christmas tree during the holidays, home-cooked meals and outings 3 or 4 times a week. He should be home with me. He can't be home with me. I don't want to leave him there. I have to leave him there.
I wonder if he knows how much I love him. I wonder if he cares that I do.
I'll never know.
6 comments:
Well you didn't fall off the ship like CNN reported! You just can't get good news anymore!
Ms Annie Mae Doodlebug, now I don't usually stick my nose in where it don't need blowin! BUT, I feel a big sneeze coming on here.
Where's a tissue when you need one?
You said Kevin is 22 years old now and your all eat up with guilt cause he is not able to live at home with you! Right? Isn't that what you said?
Honey, your Mamma must have dropped you on your head and didn't kiss it and make it all better!!!
I don't know many young men who want to be still living under Mamma's skirt tail at the age of 22. Yes he has problems. But, does that mean you should deny him what other young men would want at 22? He has a right as a human being to get the chance to be exposed to the world however small that world is for him.
A bed of guilt makes for a lot of lumps my dear! Guilt is like worrying. It's a non-productive emotion with a useless outcome! So try to free yourself from it Ann and let Kevin have what's rightfully his.
Oh, and just in case your going to tell yourself that the above doesn't apply to you because Kevin went to live there at a much younger age so you can keep that big lump of guilt your hanging on to! You can forget that lump of guilt too! Because many of us who raised healthy children made many mistakes that we can't go back and change or undo either!
So you see my dear, your going to have to let go of all that guilt you have stored up through the years because the Lord did not put you on this earth to live in guilt over something that was never in your control to start with!
Well I have found those tissues now so I have to run!
You don't need a reply to any of this unless you just want to tell me to mind my own bussiness, which I will! Provided you at least once a day kick one lump of guilt out the door! But what ever you do, DON'T kick it in my direction! I have been clean from guilt and worry for 20 years! :)
Toodle Loo 4 Now
I don't have any right to post a reply since I haven't gone through what you have.
But if I did have a right . . . I'd say something like this :-) : Play out the scenario - if Kevin were living at home, he wouldn't have the friends he's living with, the constant attention (no parent can gear their life to that 24/7 I think) and the speacially-geared outings with his friends as often. You've given him a great place to be, *plus* he has time with you and the rest of the family which is never taken for granted, as it might be if he were with you constantly (at least I think we all take people for granted more often if we see them every day).
I may not know what I'm talking about, but I do know that Edna Mae is right - you have to get rid of the guilt!! Not only have you done nothing wrong, you've done everything right (imho). If you kept him home and denied him the quality of life available to him with peers and trained professionals - then you might have something to feel guilty about!!
Your kind heart shows through even in your 'business life', which is doubly rare. What you do comes out of love for others, not concern for yourself. Even your art seems to have come about from your love of your children and wanting to sustain them.
Guess I've only repeated what Edna Mae already said, but not as well. Bottom line (imo): nix the guilt and stuff even more love into the freed-up space.
Holly
I’ve been spending the better part of an hour trying to come up with the right words to add to Edna Mae & Holly’s comments. Though my child is not austic, I do feel your pain. My soon-to-be-40-year-old daughter is manic depressive with schizophrenic tendancies, and, as if this isn’t enough, she is legally blind. 9 years ago, she was placed in an assisted living home. It was the toughest decision we’ve ever had to make. The guilt has been tremendous. A new friend, (Monique, as a matter of fact – classes in Tarpon Springs last year??) in a long conversation recently, explained in detail how my daughter is much better with trained professionals. They are not as emotional as we parents are & don’t deal with the resident 24/7. Placing her was the right thing to do for my family’s well being. My guilt was using all my energy with nothing left for my 4 sons and their familes. The guilt no longer consumes me every day. There are still bad days but they are fewer and fewer. I hope you get to that point too. My “drug of choice” when it gets too overwhelming has been golf and “coloring”. You’ve opened up a whole new & happy world for me.
I’ve been reading your blog and love your style of writing. Not only can you paint but you can write.
First, thank you for your kindness and concern and advice....all 3 of you. I knew this would touch some stuff for people.
I want you to know I am not consumed with guilt. My heart was practically ripped in two with grief and guilt the day I decided I could no longer take care of Kevin on my own, when he was 12, and he went to live with his dad who had remarried. I've had 10 years to come to terms with the capital-letter Guilt, and I'm not doing too badly there.
Intellectually, I whole-heartedly (wait? can you whole-HEARTedly be INTELLECTual???)agree with all of you. Guilt is a waste of time and energy. But...I am more than intellect.
My blog is my secret diary. It is where I share what I know is true for me and also where I let you know that although my tag line is "Happy Coloring", my life is as fraught with grays dulling the bright reds and pinks as anyone else's...
I think pain is ok. Essential, even. Past pain has taught me how to handle today's pain and made me ready for tomorrow's. Grief, sorrow, guilt inform my choices as much as love, joy, confidence...
I'm ok. I really am. Feeling the guilt is better than burying it.
But you know what I really want? I want to make a million dollars so I can build Kevin his own perfect place to live - with perfect care-takers and a perfect pool for him to play in, and a perfect theater for him to watch Elmo in and perfect house-mates and I want him to be perfectly, perfectly happy.
Oh, ok. You're right. That's not what I really want. What I really want is to somehow know that he knows that his mother loves him...immensely.
Your love for your son comes shining through ... he is lucky to have a loving mum and to be in a great group home setting.
We do the best that we can and at the end of the day, that's what matters ....
Your blog attracted me because of your amazing artwork - but this post touched my heart. My son has asperger syndrome so I share some of your concerns.
I have added your blog to my list of favourite blogs to follow.
Hi Kate,
Thank you. You're right. We do the best we can with what we have. I don't know a lot about the distinctions between autism and asperger's, but a diagnosis like that is always tough, no matter how high functioning your son may be.
When I first heard that Kevin wasn't normal (he was initially misdiagnosed as William's Syndrome) there was great, cavernous, shattering, shuddering pain for weeks...maybe months. It was like losing a child. We actually did lose a child...the child we thought he was.
The new child, the new Kevin was loved just as much as the Kevin we thought we had...but those early days were tough days, as I'm sure yours were.
Anyway, thank you for writing your kind words.
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