Thursday, November 25, 2010

Happy Thanksgiving!

Here we are. Once again the holiday season is upon us.

Just last night I was facebook chatting with my cousin. (Join me on facebook, search my name) I told her that I've been a bit emotional and sensitive lately. She asked me if I was feeling that was because of the holidays.

There have been a lot of deaths of family and friends in the last few months, so I have been feeling sad. I explained what holidays are like with David.

Today there is no viewing of the Macy's Thanksgiving Parade. He's not interested. That isn't to say that I will not try again this year. There is no viewing of March of the Wooden Soldiers, although I'm not sure if that movie is even shown anymore. There will be the wrangling of David at Thanksgiving dinner at our cousin's home. We have to make sure that David doesn't put anything inappropriate into his mouth, or try to climb into the oven, or pull items off a table. I am hopeful this year that those things don't happen. I am hopeful that he will sit and play with the toys that I purchased at Target the other day. Maybe he will show some interest in his niece and cousins who are his age. Maybe Mommy can enjoy a cocktail and eat Thanksgiving dinner in a seated position.

Last year, we did not spend Thanksgiving together. Mommy stayed home scrubbing poo. Today I am on high alert for poo. David is wearing a pair of shorts that are belted-tightly!

There are no visits to Santa. No excitement on Christmas morning. David just isn't interested. He does enjoy Christmas music and last year he did not destroy the tree. Last year he did show a curiosity about Santa, as in wanting to see what was under the beard and the red suit.

This is our normal. The new normal. Holidays in the house that Autism created. Our holiday traditions are based on David's mood and behavior on that given day. The holidays are like a bowl of cherries- we never know what we're gonna get.

I keep trying. This morning, during breakfast, I explained what Thanksgiving is- the version that is taught to school children and the version that was taught to me by my native-american grandfather. I explained to David that we are going to the home of his cousins and that we would share a meal with his family- LOTS of family and that it is ok to be with them and it's ok to feel anxious. His Mommy, Daddy, Sister, and Niece would me there too and we're all going to have a good time (fingers crossed).

David's school has been preparing the children for Thanksgiving. I have to give a shout out to Trinity School in Westfield, NJ. They made personalized Thanksgiving cards for the children at David's school and they are wonderful. David normally destroys cards, but we looked at his cards together and he was very gentle with them. He must realize that the cards belong to him because he saw his name. I will have David help me use the cards to decorate with later.

I don't give up. I continue to teach David about the holidays and what they mean. I continue to teach David how we and he should participate in each holiday.

My husband and I attended an Autism workshop two months ago. There was a representative from St. Andrew's Episcopal Church in Harrington Park, NJ They offer a special service twice a month for families with children on the spectrum. We attended the service with was non-denominational and thirty minutes long. There is a lot of movement and music and no one cares if your child is very vocal during the entire service. So David gets to attend church, learn a little something, and we don't have to worry about being asked to leave.

Happy Thanksgiving to everyone!

Monday, July 19, 2010

Ding Ding. School's in Session. Be Careful With My Kid

David has been in his ESY session at his new school since July 1. We were all excited. A new school. David is officially a kindergarten guy. We got the issue of no car seat and no aide on his school van squared away. It was all good.

On July 9th, one week into school and my wedding anniversary. I noticed, in passing that David's finger was discolored. I noticed this just in passing. I thought it was due to finger paint. My husband and I had plans for the evening so I was busy preparing for that. We had a sitter, my wonderful sister in law, so I didn't have a reason to see David's hand until the next day. On that day, I noticed that his fingernail on his little finger was purple and the nail looked mushed. There wasn't much swelling at all and David did not appear to be in any pain. My husband and I had to attend a memorial service that day so we told the sitter about his finger and she reported that David played and acted normally. On Sunday, I noticed that the purple from his fingernail was spreading upward toward his first knuckle. I decided to go the the ER just to rule out that the finger wasn't broken.

Nope- Finger broken.

David won't wear a splint and the fracture is a clean one. So we're leaving the finger alone. It looks much better already, now that the nail has fallen off.

My husband and I went to the school first thing Monday morning. Of course we wanted to know (A) how our son suffered a broken finger and (B) how our son suffered a broken finger and no one noticed.

There was a field day at school. The only conclusion I could come up with is that David put is hand under a scooter he was playing on. There is a picture of him on the scooter. He is on his stomach and he's pushing with his hands. Maybe David yelped at the initial impact and then kept right on playing. David doesn't respond to pain the way most people do. So, that's possible and understandable in the world of David.

This past Friday, David came home with what looked like a scratch on the back of his right hand. No biggie, David is always touching things and dragging his hands along textured things. His skin was just scratched, skin broken, but not deeply. When my husband gave David his shower that evening, he said it wasn't a scratch, it was the imprint of a gear!

David's book bag was given to another student on Friday, so I don't know if there was an explanation of the gear scratch in his communication book. David's not talking. I checked his school van this morning and talked to the driver. He confirmed what I already knew. David's van has a sliding door. That door is never closed until David is strapped into his car seat and upon exiting, it is not closed until David is away from the van. I didn't see a gear of any type that was exposed to David's hands.

Two injuries in two weeks. Not good. Not good at all.

Sunday, June 27, 2010

The Dog Days of Summer

Yeah, that's gotta be it!

The last few days with David have been challenging to say the least!

He finished pre-school last Wednesday. He starts his new school the coming Thursday.Maybe my own anxiety about the change in school and transportation is making things seem worse than they really are-

Nope! David is off the chains!

I had to take him to Whole Foods this morning. His behavior there was pretty bad. All the months of Whole Food training sessions were completely lost on him today. He was screaming- Imagine if you will a sustained note so high and piercing that your dental fillings vibrate. Imagine the stares of the other shoppers while your kid is in the shopping cart instead of walking next to it, like he's supposed to and your kid is screaming. And barefoot because he wanted to eat his shoes while in the car ( Gross!) and laughing hysterically for no reason.

Good times.

Over the last few days he has (finally) broken the glass in the door of the entertainment center. Had two poop smear incidents while he was securely ( or so I thought) belted into his pants. Peeled a section of wainscoting from my dining room wall. He removed a plastic plate that was screwed into the wall that covered where an electrical outlet USED to be. He threw the toaster from the kitchen counter to the dining room ( Toasters can hold a lot of crumbs) And has sassed his mother!

Yes, I said sassed. With words. Sentences.

David is one of those guys who will have a word or two. Say those words over the course of a few weeks and then they are never heard again.

For about a month now. David has been consistently verbal. With appropriate ( at least in his head) responses to questions.

After the second poop smear incident, I scolded him pretty good. He was upset with me and didn't want to eat his dinner. He told me he wouldn't eat his dinner. " I WON'T EAT"

When he removed the plastic electrical plate cover thing from his wall this morning, the one that was securely screwed into the wall, I asked him how he removed it from the wall.

David said, " I cut it"

I asked him what he cut it with. That question was met with diabolical laughter.

My husband and I searched his room for contraband. No knives, screwdrivers, or other tools were found.

After the toaster throwing incident earlier today, My boy is now confined to his room- Yeah, he's being so punished with his air-conditioning and flat screen TV. When his Waterford DVD ended, he started screaming. I went into the room and told him I see the DVD has ended and I thought he wanted another one.

Me: David, screaming is not the way to ask for something. What do you say when you want more DVD?

David: "I Want My SHIT!"

It's going to be a long summer.

Monday, June 21, 2010

Oh Gawd! I Can't!

Sigh...

That's David's newest phrase.

See, David doesn't have speech like one would have in conversation. He does use words and phrases from time to time.


About a month ago, I was reading to David-

Me: Ten little Monkeys jumping on the bed. One fell off and bumped his head.

David: Oh Shit!

Yeah, my son is a laugh riot. He says shit when he drops something or falls. He said shit to the bus driver when she wouldn't let him play with the radio.

My favorite Davidism is Oh Gawd, I Can't"

When David is asked to do something that he doesn't want to do, he will scrunch up his face and whine- Oh Gawd! I Can't"

" David, pull up your pants"

" Oh Gawd, I can't"

" David, get off the table"

" Oh Gawd, I can't"

" David, stop eating your shoe"

" Oh Gawd, I can't"

Yesterday he expanded on that phrase. We went to father's day dinner at M-Squares ( You remember them- Maria and Melvin) David ate but was getting antsy. My husband took him for a walk while I ate a lovely dinner and even had an even lovelier glass of Riesling. I went outside to switch places with my husband. The Davids were walking up the driveway and David was whining and fussing. I asked my husband if he wanted to eat. He said he wasn't hungry. I asked David the Younger what was wrong. He said-

" Oh Gawd, I can't. I want to go home!"

David has never spoken so many words at once before. Never. My husband handed me the car keys and told me to load him up. If he wants to go home. That's fine with me.

So we did an eat and run.

We gave him that one. The power of the words. Ask and you shall receive and all that jazz. A five year old controls our lives. We can only let him have so much power. Too much power is a dangerous thing in the wrong hands.

Friday, June 11, 2010

Riddle Me This, Batman.

About a month ago, David fell while playing. He falls often due to his hypotonia. He was crying after the fall. So, I did a really quick assessment to see what was injured. His left thumb was dislocated.

Me being calm Mom- most of the time- I just said to David that we're just going to make a quick trip to the emergency room and have someone just pop that back in for you. I told him everything would be fine. Just as we're standing at the front door. David looked at his dislocated thumb, which looked like a broken chicken wing, and just popped it back into place. He then took me to the kitchen to get some mixed nuts- his new favorite snack.

Fine, he dislocated his thumb and popped it back in by himself.

Since then, his teacher's have told me that he dislocates both thumbs, (which looks REALLY grotesque) his left knee and his left ankle. He tries to dislocate his elbows, but that's not happening and it pisses him off.

I called the pediatrician's office and explained what was going on. When he dislocates his thumbs it's not at the knuckle, it's in the hand. It looks plain nasty. The pediatrician's response was if he's not acting as if he's in pain, I should leave him alone.

I called the Autism Center at U.M.D.N.J. David has been seen there before. I explained the situation to the receptionist. She told me she's never heard of that before. She placed me on hold to get a professional opinion. The consensus was that what he's doing is a behavior ( NO SHIT SHERLOCK) and "they" were going to consult a "specialist" who would call me back.

I'm still waiting for that call.

So now my days have new phrases. In addition to- Get down, David. Have nice sitting, David. Pull up your Pull-Up, David. I know have- Put your thumbs back, David. And before walking anywhere- Where is your ankle, David?

I don't know why he dislocates his own joints. I don't know why he even can dislocate his own joints. He does have hypotonia. That's the excuse the pediatrician used. Because of his low muscle tone, he is very flexible and can dislocate his own joints.

I want him to stop dislocating his own joints! Why can't he just crack his knuckles like other kids?

I wonder if David weren't autistic, would the docs be more willing to investigate why a child can dislocate his own joints. I tried to tell them that my left knee started to dislocate whenever it felt like it when I was 13. Years of PT and two surgeries later my knee cap knows where it belongs and stays there. Is there some connection? I will find a doc eventually who will figure this out. In the meantime. I and everyone who knows David just has to be sure that all his joints are where they belong at all times.

David fell during gym class and cut his forehead. Right between the eyes. He needed stitches to close the wound. It happened so fast, his falling, that his aide wasn't sure if he fell because he was dancing or he fell because his ankle wasn't where it was supposed to be.

My kid can't be the only one who does this. Can he? If others out there have a similar issue, please contact me.

P.S.- To the person who sent me an e-mail from her mobile phone on 6/9.- I really meant it when I said call me. Anytime, honestly.

Wednesday, April 14, 2010

I've Never Been To Spain

I haven't traveled the Pissed-Off Parkway either.

When my son was first diagnosed with Autism. I didn't feel angry. I didn't feel like throwing a pity party. I was numb for a few days. There was so much I needed to know and I didn't have a whole lot of time to learn it. Since David was already receiving Early Intervention services for his global delays, the ABA portion of Early Intervention began very soon after his diagnosis.

What I wanted to know was WHY? Not why me, why him, why us, but why at all.

There was no question that my son was born with Autism. There was no concern that his immunizations caused his Autism because he hadn't received any immunizations prior to his diagnosis. A conception,( I was 42). pregnancy and delivery that were so easy, so unremarkable, should have produced an unremarkable child- right?

I doubt I will ever know the why in my lifetime. I hope someday we have the why. The absolute truth. Until then, the why isn't important to me. What is important is being the best parent and advocate I can be for my son. It's important to keep my head and my heart open to new ideas. It's important to listen to my son, to be fluent in David. He had a lot to teach me.

Monday, April 12, 2010

Autism in the Real World

Jodi Picoult has a new book, House Rules, that debuted at # 1 on the New York Time's Best Seller's List. Ms. Picoult is a wildly popular novelist. She's Harvard educated so I'm sure she did her homework on the subject of her latest novel.

Her latest novel focuses on Emma, a single mother of two sons. One son has Asperger's and he is accused of murdering his tutor.

Wow! Sounds like a real page-turner.

Ok, Here's my thing. Popular culture is aware of our kids. Grassroots efforts to raise awareness is working and working well. But why is it that when the autistic are represented in novels or in movies or television shows, we only see those who have Asperger's.

Is it because those with Asperger's are "higher functioning?" Is it because they are more easily understood by those in middle America? Because we all know that those in middle America are a bit slower than the rest of America, but they are the group that marketeers most want to reach. Is it because the quirks of Asperger's is neater, cleaner, more socially accepted?

There have been people who ask me about my son. They will sometimes ask me with a hopeful look on their face if my son has Asperger's. When I say no, they might respond with "too bad"

I guess Asperger's is the good kind of autism.

I'm here to tell you people that there is is no good kind of autism. One's life is not defined by where they fall on the spectrum. One's potential is not defined by where they fall on the spectrum.

I challenge those creative types in the creative world. You want to do the world a favor by including families living with autism in your ad campaigns and in your movies? Show it like it is. Show the career woman who had to end her career because the demands of caring for a child with autism and the demands of corporate america don't mix. Show a commercial for pull-ups large enough to fit an 8 year old who just started potty training ( and give us deep discount coupons while you're at it) Show a marriage that crumbled under the strain. Show the life of a neurotypical middle school kid who wants nothing more than to live in a normal house with a normal family with a normal sibling. Show is that!