Stresses

I don't mean to be so nasty...really, I don't. I went through several rough patches over the summer last year. One instance: a letter from the school's transportation department saying, Oops, we sent you a letter, telling you when the bus is coming to pick up your son for summer school by mistake because we say he *isn't* going to summer school. I thought I was going to throw up. I do have an IEP that tells me that he is *qualified* (and thus is supposed to get) extended year services for the summer. While I realize it is not the end of the world--there are other options, but I've had plans set for summer for well over two months now. It will be resolved but for a panicked twenty minutes I was very upset.

This is a good article explaining why some parents of kids with autism are under such stress
http://www.child-autism-parent-cafe.com/stress-on-families.html

This is interesting, although I'm not 100% sure about autismspeaks.org
http://abcnews.go.com/GMA/AmericanFamily/story?id=2286321&page=1

My Jimmy? He’s a Runner…

"Run, Forest, Run." HA!

During one visit to my mother in law’s house, Jimmy was playing outside in the rain with my sister-in law, Andrea (Auntie Drea). She was sitting on the front steps and Jimmy just…took off. She came inside and told me that he ran up to the corner of the street and then took off running up State Street. At first, I was like “Oh, okay.” Then she said, no, you’ll have to get in your truck to catch up with him. And we did. It was a grueling, nerve racking 5-10 minutes where I had to first find him, then dealt with traffic NOT letting me over to the right hand lane (little road rage surfacing, but understandably so on my part!), and then to pull into the next block up to have Andrea jump out and yell “JIMMY!” He was wet, still running, and said something like “Hi Mommy!” He ran a total of 9 blocks, in the pouring rain, with lots of traffic (State Street in Olean is a busy street: see this map. At least two of those streets had stop lights. The first of many instances in his life so far where luck (and perhaps God) was on our side! Other Olean fun moments:

• Going to the playground on 14th Street and watching him fall backwards down the 8 foot tall slide (I had to cringe at that one). He was hurt, but an hour later he was jumping on Grandma Ruggieri’s couch. “I guess he’ll be okay then.”
• Another fun moment I remember is when he jumped down the front stairs, all five of them. I tried to yell to him to stop, but he did it. He didn’t fall, but when he landed, he had a bit of a wounded look on his face. Cement hurts!

There have been some other stories of Jimmy on the run:

On the first full week after the start of school, I got a frantic call from home: “I can’t find Jimmy!” I told my husband to go look for him at places where he thought he could go and then come home and report in. I got home--no sign of him. I had a couple other places I wanted to look, but told him that if he should call the cops to report him missing. While we were discussing this, my husband and I were walking around in disbelief, not even able to guess what happened and where he was. We had some help from the neighbor behind us (THANK YOU!). So then I went to a few other places, no Jimmy in sight. As I drove up to our house, I saw a police car driving away. They told my husband that they found him on South Bay Road in North Syracuse and that he had almost been hit by about five cars (THANK YOU NORTH SYRACUSE POLICE DEPARTMENT!). South Bay Road in North Syracuse is an incredibly busy road (see this and other roads in this tale on this map) and how, during our frantic searching, we didn’t find him there is amazing. How he didn’t get HIT is amazing. And he did all of this with no shoes on. I quizzed him and quizzed him and the only reason he could give me was that he couldn’t find Daddy. This all took place in 45 minutes, 45 minutes of HELL!!

He’s run out of the house since then a few more times, and once he got to Church Street (a nearby street that is also tremendously busy) butt naked and thankfully I caught him in time. Daddy had left moments before and Jimmy was upset because he wanted to go to the store with Daddy! Thankfully the owner of the house next door came running up to help as well as a nice woman on Church Street who lives across the end of our street.

Another time he got as far as the same location, naked again, but riding his bike, insisting he had to go to the “Red Playground” (Kennedy Park on Grove Street). Again, the only way I could catch him was to jump in my truck and grab him. Both Mom and Dad were there and boy did he fight me. He just couldn’t understand how at 3 years old he couldn’t go to the Red Playground by himself.

The last time was last fall and he got about 25 yards away, at night, before I yelled to him, “Where are you going???!??” Again, he couldn’t find us, so he walked out. Scary. Too, too scary. Next I'll have to tell about the stories about shopping!

How Does Your Day Start?

What would a "normal" child do on a typical school day morning?

I have a relatively set schedule for Jimmy.

After we wake up and come downstairs, he picks out which color marker we will use on his visual schedule. I have four dry erase markers: red, green, blue, and black. Some days I lose track of where I've put the marker for the day before. Some days he is OK with this, others he is not. On a bad morning, we simply do our best to move forward, pick one of the remaining colors and it often cascades into everything else throughout the morning. Anyways, after we select which color, we mark off essential things we need to do on our morning chart (a picture of this is below), which is based on a original schedule, created last year by Jimmy's speech teacher at Main Street, Julie.

It says at the top "Time for School!"

Below it, is a grid. First is a picture of a bagel with the words "Eat Breakfast." with a box next to it. In this empty box, after a task is completed, we place an "X"

Next is "take a bath" with a picture of a bathtub. (Some days despite my insistence he will NOT take a bath or shower...on those days I simply mark the chart with a "NO")

There are two empty boxes to the right, where I typically write things, draw a happy face, draw a pizza for pizza day (which is usually Thursday) and we always write the day at the top.

Next: "Get Dressed" with a picture of a child getting dressed.

Within our morning routine, is, to quote a Star Trek term, a "sub-routine"! (Sorry mom is serious sci fi geek/nerd!) With the help of Julie from Main Street, we created a routine which must be followed or he tends to be very unruly and upset. We have an empty peanut butter jar with a slot cut out in the top (another prop from Julie, God Bless her), and for each item of clothing we have a milk jug top. While each milk jug top is not exactly the same in style/look, they are the same color and need to be the same color. I tried substituting a blue top for a red one and got a serious meltdown.

Each number is for each of the main items of clothing:
1=underpants
2=socks
3=pants/shorts
4=shirt
5=sneakers/boots/sandals

Anyways, 1 used to be diapers, then became pull ups and now it's UNDERPANTS! YEAH! And some days I'm out of it, and put #4 where #3 is supposed to go and I get a serious yelling-at!

Next to the block for "Get Dressed" is a picture of a TV--Jimmy is only allowed to watch TV in the morning after he completes the first three tasks. Jimmy mostly watches PBS Kids (http://pbskids.org/):

• Arthur on at 7:30 in Syracuse
• Curious George on at 8:00 in Syracuse
• Clifford on at 8:30 in Syracuse, though only get to watch one out of the two stories

I love it when he watches these shows, because my Jimmy loves music and he sings along with the theme songs. Despite not being able to enunciate the words, he certainly has the inflection down!

Ever watchful of what time it is, at a specific time, usually very close to 8:30, I either use several verbal reminders or set a timer so that at 8:45 he needs to turn the TV off. We then have time to use the toilet, if needed, wash his hands, and brush his teeth. There are many times that he will refuse to use the toilet, so I don't push it too much since I have to keep him on task for everything else!

In the bathroom I have to have the almighty choices, in this case--toothbrushes! He has about 4 or five right now. I won't even go into the prompting that must take place to have him brush and I can never leave him alone as he'll either squeeze out five tablespoons of toothpaste, get into the medicine cabinet or something else.

Then on the schedule is a picture of a pair of sneakers with the words "Put on My Sneakers" and after the empty box is a picture of a backpack.

Then we go outside to wait for the bus which comes to our street. Some days Jimmy is tolerant, will listen to my simple requests, and be ready to get on the bus. Some days, he takes off down the street and I have to go get him. We can both lose patience with each other and get frustrated easily. Now that a month has passed, the morning routine is becoming easier and easier to predict and to deal with. Now if I could just manage weekends!!!!!

What Have I Been Up To?!?

Geesh, I know that I haven't posted to this post in a long, long time, but a YEAR?!?? Whew! Well, what a year it's been! Jimmy is now three, has been attending preschool (half days) since August 2005, and, well, life just continues to get more and more interesting. He is getting ready to attend preschool (a "Total Communication" classroom) for the summer and for full days in the fall. His language problems have been steadily improving since he's been attending preschool, but he has a ways to go. I have his annual review with the school this week, which will hopefully cement all of these things happening. He is still a big boy (over 38 lbs!) and growing like a weed. The picture above is from fall while raking leaves in our front yard.

We've been in our house just over a year and while paying the bills is not easy, it is worth it. What a difference! We will get Jimmy's big boy bed with Spiderman sheets and comforter this weekend, so this is yet another milestone I'm looking forward to.

Work is wild and crazy but just as enjoyable. I hope to write a little more regularly but I can never promise anything!

Pink Eye, Tumbling Diaper Bags, and The Wee Morning Hours

I wish someone would have told me that having a child would entail things like giving them eye drops for pink eye. I had to wrap my Jimmy up in a blanket to hold try to keep his arms still, pin him down and then TRY to pry his eyes open enough to put a drop in each one. Just one more wrestling match with a toddler I guess. Thankfully now the drops are over and by the end, I have to say Jimmy was a trooper but boy am I leery if I see him rub his eyes!

The other big event of the week involved the diaper bag. I picked Jimmy up at his sitter's house, and before I put him in the car, I placed the bag on the roof of my truck since the ground was muddy and wet. I strapped Jimmy in, took off driving, la de da, and got on the highway without a care in the world. As I merged on, I saw something tumbling in the road and thought "Who would be throwing something out like that?!?" It was about three seconds later when I realized it was the diaper bag. At the same time, a car drove up on my left and motioned to me. I mouthed to them, "I know, I know, I just realized it was my diaper bag." Sigh. So I had to drive a half mile to do an illegal U-turn, people beeping at me the whole time. Sorry but I had to do it. Anyways, it just so happened that my bag fell in the road across from the next U-turn spot in the opposite direction. Wasn't the bag smack in the middle of the two lanes! I crossed my fingers that the bag itself hadn't been run over. I had suntan lotion (don't ask), baby powder and a couple other things that would have been a mess. His shoes, socks, one mitten and a notebook containing notes from sessions with a teacher were strewn across the highway. Well, albeit it was dangerous, I had to get the stuff. I first ran out and got the bag itself. It hadn't been run over and most everything was still inside. Next one shoe, then the other, then one sock, then the next, and the mitten blew towards me due to the motion of the trucks and cars driving by. I recovered one diaper (figured I shouldn't litter), and lastly I got the notebook which was pretty much a casualty but I felt I had to get it. I guess I was lucky that there were enough gaps in traffic that I could rescue everything. If I had driven all the way home, I'd probably forget it, but since I saw it happen and knew where it was, I had to go back. They were brand new shoes!

Lastly, Jimmy has taken to getting up at "the butt crack of dawn" as my sister says. He's been getting up at 4, 4:30. Let's just say it's TOO EARLY. I wish he would just crawl into bed and doze off with me, but he gets into bed, lays down on top of me, shoves his face into mine, babbles, sometimes does he recitation of the alphabet or numbers. He sometimes says "Barney" or "Elmo." Sigh. Can't sleep through that. I'd keep him up later at night, but I'm usually so tired that I WANT him to go to bed at his normal time (about 8 o'clock most nights). Maybe this year, I'll actually appreciate day light savings time, since he'll be up at 5:30 instead of 4:30, but in the end it'll backfire because if I put him to bed at 8 o'clock, he'll think it's only 7 o'clock. No rest for the wicked I guess.

"Mo Pees"

"Mo Pees" - this was the phrase from my son's mouth when he wanted more milk. We're struggling to get him to talk, and, at the same time, teach the simple things like, "When you want something, you say 'please.'" And despite a lot of effort I don't get any words at all, just a typical toddler "eh, eh" along with virulant body movement--refusal to vocalize much at all, but the other day I was surprised.

Jimmy was eating dinner and his milk glass was empty. I had been asking him, "Do you want more?" Jimmy can say and sign "more" but these days I got the "eh, eh" routine. But this time he distinctly said "Mo pees"--MORE PLEASE! YES! And he did it without my prompting! The small things like this really matter!

I'm Not Alone!

Only a brief blog today. In reading my email, I saw an article in my periodic e-newsletter from BabyZone about parenting and blogs:

Have Kids Will Blog
By Meredith O'Brien
http://www.babyzone.com/features/content/display.asp?contentid=1689

So, of course I'm not the only one blogging about parenthood....

I also have a "baby book" on BabyZone with a lot of Jimmy pictures (of course nothing too recent):
http://www.babyzone.com/features/babybooks/Book.asp?BookID=265646

As ever, it seems impossible to keep up with some details but I try. Time to get back to the trenches.