Sunday, June 7, 2009

The Good, The Bad, and The Ugly

I have been on a roller coaster lately and I just want to get off or slow the ride down a bit.

David has been challenging to everyone. Love him lots, but if I had a dollar for every time I uttered or shouted the words, "NO, DAVID, NO". I would have a really nice designer outfit complete with a pair of Manolos.

The boy is driving me crazy. Ok, I get that I need to understand the function behind his behavior. I must be stupid as hell, because I don't understand the function behind using my dining room chairs as playground equipment. This must stop and stop soon, because my husband-A.K.A McGuyver- is getting ready to build an elaborate strapping system to strap the chairs to the table to keep David from moving the chairs. McGuyver, I mean Dear Darling Husband, has already constructed a door that leads from the dining room into the kitchen to keep David out of the kitchen. Think Green Acres for those of you old enough to remember. It's not the decorative statement I'm trying to make.

Did that work? Nope. David soon discovered that he can use a dining room chair to climb through the cut out-or whatever you call it, directly to the kitchen counter. ( I get the function of that chair move)

While I'm on the subject of decor- My house looks like a baby prison. I would call the decor modern cell block minimalist. There are few pictures on the walls because David has climbed and teared them down. No knick-knacks, no chotzkes. It's bare bones minimum around here. I haven't planted any flowers for fear David will eat them.- Ok, that's just part of the reason, the other part is that I'm lazy.

David doesn't communicate with words. But he can flip you off like a pro. The latest victim was his dear teacher, Miss Liz. She's a sweetheart. Truly. She was at our home conducting a therapy session and during the session she told me that David said, "Hi" very clearly to an aide who used to work in his classroom but was moved to another class some months ago. David really liked this aide and he said "Hi" to her in the hallway. So Miss Liz was saying that her feelings were hurt that David still has not said hi to her ( In a joking way of course) David rubbed his body against the entertainment center in the living room and it sounded like he said, " Miss Liz, Miss Liz" in a teasing sing-songy sort of way. Miss Liz said, "Oh yeah?!" and she proceeded to try to get him to say her name again. After much prompting he did say, "Liz". He then grunted, removed himself from the grasp of dear Miss Liz.He then walked away and flipped Miss Liz off. It wasn't just a flip of the bird. This was an under the chin, complete with biting of the lip flip( It's a Jersey thing) Miss Liz and I tried really hard to control our laughter. We did not succeed.

I will admit that David learned the flip from me. I do flip drivers off when I drive. I'm embarrassed to say that David has seen me flip many a driver. I will be more careful in the future.
Bad Mommy.

Last weekend, I decided to take David on a little stroll in a County park that is near our home. There is a walking trail that is two miles one way and has a gradual incline. I thought David would walk for a few minutes and want to stop. That child walked the four miles. It took us almost three hours, but that was ok. Many people were on the trail that day so we saw many things that were interesting. There were chipmunks which David tried to catch. There were people on bikes and trikes and rollerblades. I was worn out and David was energized. I decided to take him back the following day. I took his trike. He was able to pedal on his own. ( I was so happy. It took me a long time to teach him how to ride that trike) He didn't ride far. He got off the trike, held my hand and said,"tired".

Ok! No problem. I was really hoping that we didn't do another four miles.

That's one of the frustrating things about autism, or autism for David. There are times when he will say a word appropriately and very clearly and then we will never hear that word again. It could be months between his usage of words. I try not to get excited anymore thinking Yes! He can speak and he will. I know think that he is physically capable of speech, but his autism won't allow free speech. I understand his mannerisms and his grunts and his postures. I know that's not enough for the world, but it's enough for me, for right now anyway.

David has recently begun sleepwalking. I was a sleepwalker and so was David's sister. So that doesn't freak me out too much. We're just sure that he can't leave the house. It's just one more thing to worry about.

I'm just writing away tonight. I won't be insulted if you don't continue reading.

Lately, well since the glass eating incident, I have been more emotional. I think the enormity of David's autism is hitting me. When David was first diagnosed, I didn't have those feelings of grief and I didn't cry much. I didn't react in a way that people, and books, and doctors said I should have. Now I'm feeling angry and confused and frustrated, and exhausted. The exhaustion has been pretty constant since David's birth but it's deeper now. My bones are tired. I don't sleep well or eat well. As David is getting older, the gap between him and his neuro-typical peers is widening and it's more painful for me to witness and live with. My isolation is deeper also. I got a pedicure on Saturday and I was shocked that it cost $20.00. I had to call my daughter and ask her how much a pedi should cost. The price was right. Then I had to think when was the last time I had a pedi. I couldn't remember.

Part of my frustration lies with the experts who work with children who have autism. I can ask why David is doing some of the things he does and I get the "I don't know" answer. Well, Dang! If they don't know, then I'm just screwed. He can't tell us, we can only guess.

Living this life is hard. It is tough to be consistent and I admit that I sometimes take the easy way out. Take dinnertime for example. David wants my attention during that time. Momma has to cook. I know I should walk David back to where he should be sitting and make him sit and tell him to show me nice sitting and keep walking him back everytime he gets up. Yeah, that sounds great in theory. However, I'm a 30 minute meal kinda chick. I like to have a full meal complete in 30 minutes. I've gotten pretty good at it too. Doing the ABA nice sitting thing eats into my 30 minutes big time. So, Momma has to have a plan. What is the one thing that David will chew on that will keep him still and not want Momma for 30 minutes? It's my bra. (Call Social Services if you want to- it works) David likes to chew the plastic stays of my bra, so I will give him one- a clean one thank you very much. He will sit and chew and play with it until dinner is served. Is that appropriate? Nope. Does it accomplish my goal? Yep. 'nuff said.

We have started potty training bcause I told you all that I will not be changing the diapers of my pubescent son. I must say, it is going well. He will sit on the toilet without resisting. He is able to go #2 but he won't urinate. (I know, that's backwards, right?) There's no pressure, we just take him to the toilet and reward him for sitting. Slow and steady wins the race and will get that boy out of diapers.

I have met many wonderful people who are readers of this blog. I have become friends with a student who lives in California. She is studying to be a behaviorist. She is awesome. She was kind enough to allow me to participate in a class project and she shared pictures of herself and her family- DJ you are awesome! Everyone who writes to me changes my world. They may not realize it, but they do. Just knowing that I'm not alone and having someone, a complete stranger, take the time to send me an e-mail with words or encouragement or advice means so much to me and I thank you all. Keep those e-mails coming and look for me on facebook too. Search for my full name in No. New Jersey and you will find me.

So that's Autism- The Good, The Bad, and The Ugly once again. The good gets better, the bad gets worse, and the ugly just keeps on being ugly.

1 comment:

Hummingbirder said...

I love reading your writings and can relate to some extent.
My little guy is only 3 1/2 but I feel exausted by the austism tantrums that are killer lately. My son will go #1 but is terrifited of going #2 on the potty. If I let him run around naked then he goes #1 on the potty and begs for a diaper when #2 is on the way.
The other day I was mean and wouldn't put one on him. He went #2 on the potty but was very upset about it.
Thaks for sharing your stories. Sorry, but I get a good laugh everytime I read your blog. Thank you!