Fun, Fun and More Fun

What was I thinking? The one night I could have taken an Ambien and gotten away with it, I forgot them. I tossed and turned all night. We were up and adam (or is it atom?) at 9:00 for breakfast, Starbucks--and more shopping. Gilroy has 145 Outlet Stores and yesterday we had just scraped the surface. Today we brought it home and power shopped the rest. I found the biggest thrift store in Gilroy that I have ever been to. If it wasn't for the foot-tapping-ten-year-old, I could have stayed there for five hours. I guess I wore him out...We stopped and had a late lunch and on the way home through San Francisco, Jimmy took a little nap. It was a gorgeous day in the city. As we were passing over the Golden Gate Bridge, I mentioned to Jimmy that I had never walked across the bridge--he said, "Either have I, come on, let's do it!" So we did. We were very spontaneous, unlike my usual completely planned-out-self. We parked at the Vista Overlook on the Marin County side and walked across the bridge.It was a fun thing to do with Jimmy. He was so happy and excited that we were both experiencing something like that for the first time. I had bought a pair of new tennis shoes and I hadn't been wearing socks all day--with all the walking, I was starting to get a blister on my little toe. I complained about it to Jimmy and he offered to trade me shoes. We just happen to be the same size. I laughed because the shoes I bought were pink and lime green with flowers and glitter...he said, "No, mom, I'm serious. I'll wear them, I don't care." And he did. He traded me shoes and wore them for the rest of our walk on the bridge. Way to take one for the team. I thought that was such a sweet gesture. What other too-cool-tween boy would offer to wear their mom's pink flowery shoes in public?

We came home and I was so happy to see the Doodle. When I'm away from him, I really miss him. I did pretty well with the feelings of guilt this time. He was pretty happy to see me too, he even put down his Doritos for a big hug and kiss. All night he was really affectionate with me, he kept coming up on my lap and giving me big hugs, patting my back and cooing while he hugged me. Not to brag, but I think we have one of the most affectionate autistic children ever. So for that, I am eternally grateful and blessed. It's nice to know he missed me. And as much fun as we could cram into two days, I'm happy to be home.

All About Jimmy

Today was our 3rd annual trip to the Gilroy outlets, just me and Jimmy for school clothes shopping. He loves to come here, I took a couple of days off--we stay at the same hotel and we go out to dinner and a movie and it's two days dedicated to just Jimmy.

He loves the stores here and has already burned through most of his school clothes shopping money. He's bought 4 pairs of jeans, 4 sweatshirts, 4 tee shirts, 3 pairs of shoes, two back packs and an overnight bag. Not bad considering these are all his favorite name brand items: Volcom, Fox, Vans, Quicksilver, Nike. I've shopped a little bit too. One thing I've learned in my old age is how cheap I've become. I am just as happy shopping at Marshalls, Ross, Kohls and TJ Maxx instead of Nordstrom, Macys or Saks. I am just as thrilled with my cheaper purchases and I actually enjoy the hunt of finding a good deal. I never pay full price.

Jimmy's been doing his best to talk me into paying the sales tax on his purchases. Being 10, he doesn't quite understand if something is $20.00 why he should have to pay the government $2.00. What can I say? I don't quite understand it all that well either. It's not like I can say, oh well, you see son, the sales tax money goes to create better roadways and highways as we sit in perpetual traffic from constant road construction that seems to not improve anything; oh, and the sales tax goes to into the school budget so that you can have important things in school like Music, Physical Education and Libraries...oh yeah, you don't get those things anymore. Hmmmm. Well we know it's not going to state parks and beaches so, sorry, not sure where the money goes exactly you have to pay it just because they said so.

Ironically, I cannot sleep--the one night I have a quiet bed all to myself with black out curtains and no back kicking Doodle to worry about, it's 1:00 am and I'm all wound up.

IEP

It was long and uneventful, no breakdowns and only a couple of going out of my way to make a "point" instances. In a nutshell (no punn intended): We no longer have a nurse one-on-one requirement; which is a good thing because the seizures are somewhat under control. So if things keep status quo, I couldn't be happier. No seizures are a good thing; although, it's going to be a huge adjustment and transition to not have LuLu riding the bus and going to school with him every day. She was a great asset to the classroom, the teacher and most importantly to the Doodle and our family. It's hard to find that kind of a good fit. And the Doodle isn't easy, so it's going to take the right person with him.

The Doodle doesn't know it yet, but he's got some big changes coming down in August for the new school year. New classroom, no more medically fragile class. New teacher, new Shape Aid, new Bus aid, new Speech Therapist (YAY!), new kids, new routine, lots of new things. Sounds pretty exciting, but for an autistic child with transition issues, it might be a complete disaster. I'm crossing my fingers and hoping for the best. I'm going to will it with my MIND to be smooth sailing. There. I just did it.

Thanks to my friend Jill...I asked for some more summer-time Shape hours. I didn't even know it was an option. So he'll get 3 hours a week where someone will come and work with him here in the home on "learning stuff". These are the kinds of things "they" know are available but do not offer up unless pushed. Learning what to ask for and what's available is like getting a PhD in special needs services--once a parent goes through all of the ins and outs and ups and downs of years of fighting for services, you are fully capable to teach a class on it and become a special needs advocate/consultant. However, since the services change las frequently as income tax laws, it would be impossible to keep up with what is available.

So, all in all, my 2 1/2 hour IEP meeting was pretty good. No screaming or yelling or arguing and I didn't cry once although I thought I might any second. Once seated around the little kids table in the medically fragile classroom with pictures of severely disabled children and wheelchairs and handicap devices staring at me, I had a moment of "wow, this is really my reality, I have a severely disabled child". Sigh.

Listening to these people talk about him in such clinical terms with not a lot of feeling or emotion became a little much for me and I had to go to my happy place when the lump in my throat started cutting off my air. It's hard, even though I know it's true--how very, very challenged and developmentally delayed my son really truly is. To sit and talk about his learning disabilities, his physical disabilities, his medical challenges and behavior issues, there is no running and hiding or burying my head in the sand. Things have gotten progressively worse in some areas and I'm wondering how unrealistic my expectations are for him. Each end of the year report had the same theme...depending on his mood would determine what kind of learning ability he had that day. Each report talked about his bad behaviors: tantrums, screaming, hitting, throwing. He sounds like such a monster and the mama bear in me almost got defensive until I took a breath and then felt validated.

I have to accept it and I thought I had but evidently I haven't...really. Most of the time I go through my day like this is just a bad dream and I'm going to wake up and everything is going to be ok. Like it's something he migh outgrow. Like he's going to catch up. Like he's going to fit in.

It is what it is and I can only hope and pray that it will improve with time. If I could only will him a better and easier quality of life, I would.

First Boating Trip this Year

It's almost July and today was the first time we've taken the boat out this summer. It was hot, and I waited too long to apply the SPF, so I'm feeling a little "warm" in some places right now. My body has not seen the sun in a very long time--but the vitamin D felt good.

It was just me, Jim and Jimmy. We left the Doodle home with a nurse. It would have been way too hot out there for him and I worry about the heat bringing on seizures. It would have been an entirely different kind of trip had we of brought the Doodle. There would have been no time for relaxing; we couldn't stop the boat and everything he could get his little hands on would be thrown into the water. I think he has just as much fun climbing around in the boat when it's parked in the garage and when he gets tired of it, we can just go inside.

Jimmy had a great day. Sometimes a 10 year old with a special needs brother needs a day with his parents all by himself, Doodle-free. He swam, knee-boarded, wake-boarded and relaxed. We listened to music and had a nice picnic lunch. Besides my sunburn, it was a great day.


We came home and did one of the Doodle's favorite things, we took a walk down the driveway and brought the garbages down like we do every Sunday night. This time, he wanted to push the garbage can. And, who are we to stand in the way of the little things that bring him such pleasure?

Summertime (this will take a moment to load)

IEP Ready

Either I've been dealt a shitty hand of therapists for the Doodle or I am extremely hard to please and impossible to get along with. Let's just say it's the latterand it's just me and my sparkling personality.

Why am I constantly arguing and fighting for what should be so very obvious and entitled to my child?

I'm not asking for anything out of the ordinary.

First off, I never knew special kids received any services at all until I had one. Then, I'm told he should have this, this and this. And then, later, when "this" gets taken away or not offered and I have to ask for it, it seems ridiculous to me. He's either entitled and needs the service or he doesn't. Why should I have to get into huge arguments and screaming matches with people who know that he is entitled but sit back and make me ask or beg for it? Why is it so hush hush--top secret? Why dangle the carrot one year and then yank it the next?

I won't recap for hours my horrible experience with the pathetic speech therapist this year and how the Doodle went from nine speech goals when he was two to one speech goal when he was 3 and the other speech goals dropped off the radar and yet, he still isn't talking or hitting his goals. Or how the lazy ass speech therapist tried to act as if the Doodle had 10 "new" words and hit is goal for the year when we all knew those were OLD words (signs) he had been using for two year now.

No. It gets even better.

After being told the Doodle is entitled to at least 2 hours a MONTH (that's a half hour a week) of physical therapy, I was told today that he's not entitled to that now because his nurse (who we pay separately from the school system) takes him to the PARK!

Are you freaking kidding me? I had to ask her to repeat herself because I was sure what I was hearing had to be wrong. "So, you're saying, since our Nurse takes the Doodle to the park, he shouldn't get any physical therapy at school???? Are you serious?"

She could not understand why these two things were completely different. Uhm, how about, our nurse is not a licensed physical therapist? How about that? How about, it shouldn't matter what I do with the Doodle on the weekend or after school, if we take him for walks, roll the ball back and forth with him, or if we dress him up in army fatigues and put him through the obstacle course with the Green Berets...what does that have to do with him getting physical therapy services through school?

The fact is, the Doodle is going to be four years old next month and still cannot walk up or down stairs by himself. He still cannot run with bending his knees, he still cannot jump off the ground even an inch. There are basic skills he has not mastered and his range of motion and gait is off which greatly effects his balance and spacial awareness.

So the argument ensued. I told her she was completely crazy and what we did with him outside of the school day was no concern of hers...he was either qualified for physical therapy or he wasn't based on his needs and it had nothing to do with him going to the freaking park!

I don't want this Physical Therapist anymore. If I never see or hear from her again that will be fine by me. And if I never see his Speech therapist, the one who calls old words=new words, than that will be OK too. I'd like to tell them both to pound salt.

And now I get to be a bitchy, demanding, difficult and hard to please mom (that I am) at the IEP on Monday when all I want is to get the Doodle the few services he is qualified to receive. Oh Stinking Well.

The Worst Thing About Autism...

For me? Is the unknown.

Cut!

I know I'm going to get flack for writing this, much less, thinking it. But since this is my blog, a place for my thoughts and opinionated feelings, I'm just going to say it and deal with the hate mail later.

Here goes...

Severely autistic, ocd, adhd toddlers with sensory processing issues have no business going to a movie theater to "watch" a movie. Now, maybe other severely autistic, ocd toddlers (age 3) can manage themselves at an hour and a half movie with no problem, so I can't speak for all but I do know MY child should be kept as far away from a movie theater as physically process.

One of the teachers in one of the special ed day classes at summer school thinks taking the (autistic) children to see Toy Story 3 is a good idea and is trying to organize a movie day instead of a day of routine, scheduled and anticipated summer school. The plan is to go to the movie in the am, before the actual movies start for the general public==that way it will be only the special kids and their parents.

I've tried to look at this from all sides, I've over analyzed it like I do most things. I'm sure there is plenty of great intention behind this whole plan but I can think of about two hundred places that might better suit the short attention span and bad behavior of an autistic child. Mine anyway.

Another mother of an autistic boy in the class and I were talking...she's right there with me on this one. So, at least I know I'm not being completely irrational about this. The teacher seems to think it is going to be fun. She said the kids don't have to watch the movie really, they can just run around and it will be ok because the won't be disturbing anyone. Hmmmmm. Ok, then why not take them to a kids gym where they can run around and play with the Lights ON--a place where running around is encouraged? Not a dark, loud, place with stairs and millions of people germs on every single surface.

My thought is that unless the idea is to "teach" your child how they should behave in a movie theater, by sitting still and being quiet, then what is the point? I know that the Doodle isn't going to be all broken up if he doesn't get to see Toy Story 3. He doesn't know what Toy Story 3 even is. It's not like he's asking about it...and would he even like it or be interested, probably not. The subtle grown up humor and precise comic timing of Tim Allen and Tom Hanks would be completely lost on him, and the incredible special effects of Pixar would be equally lost.

Am I depriving my child of fun and popculture? Nope. He would get there and be completely overstimulated and not know how to regulate himself and he'd go a little nuts inside and there'd be running and falling and crying and chasing and a lot of flapping and then we'd have to leave early and then I would get to the car while he screamed and I would kick myself for going and question my better judgement. Again. And while having flashback and an acute moment of deja vu, I would wrestle him into the car. I would let a big sigh, put my keys in the ignition and sob. The sobbing comes from a place where I know better, but try to have hope and then realize that things aren't getting better, they are getting worse while trying to do something so very normal and mainstream, something I love to do more than anything...go to a movie. It's another wake up call that illustrates to me that the simplest of pleasures such a going to a movie are not within my reach with the Doodle. Not now anyway.

Every day I am reminded of how different the Doodle is and how different my life is now and is gong to be in the future. So I'm feeling a little resentful that a teacher who should know better is planning such an event for such young children who could probably care less about seeing the latest and greatest movie out in theaters.

What scares me about this is that a Teacher of autistic children does not understand the anguish she would be putting parents through; maybe not all parents, but parents like me with a child like mine.

Creating a Monster or Two or Three

Before I start this post, you need to know that there is no fine print. I have done this to myself and I take full responsibility for creating the nightmare I am in (with both kids and my Husband).

Jimmy was our first born. And I breast fed for two years...I know that's a really long time. And those who know me, know how much I like to sleep so new first baby + paranoid new mom + loving my shuteye = Jimmy slept with us. Jimmy slept with us for FIVE years. My fault.

Swore up and down and sideways that the second baby would NOT be sleeping with us. Because, I learned my lesson. Besides, this was the second child and I wasn't anywhere near as paranoid. Guess what? This one, the Doodle, slept with us too. How about the Doodle was such a light sleeper I didn't dare move him to put him in his crib or bassinet because he would wake up and SCREAM and since he was a much harder baby I wasn't chancing it? I'm still not sure where they got the term, "sleeping like a baby" because I'd have to disagree with that one. He would sleep in his swing or with us, never in his crib. Ever.

Fast forward to a year and a half ago when the Doodle started having seizures; and I had to monitor him 24/7. He's still a bad sleeper and now he's been programmed. He won't go to sleep now without me in the bed at night time; so it's 100% on me to get him to go to sleep. Even if I can get him to sleep, he wakes up periodically and reaches for me and if I'm not there, I get a scream from him.

Jim can lay down with him, but there is no guarantee he will go to sleep. Does this limit what I can and can't do in the night time? Absolutely. It is now MY job to go to bed with the 3 year old, yep. Jim likes to play the "work" card. What's that you say? Oh that's right, I work full time ALSO. Hmmmm. What ever happened to equality? Sharing the load and all that jazz? He gets his breaks when he goes out of town, he gets to sleep Doodle free and make his own bedtime whenever he wants and watch grown up tv. I guess, I'd just like it when he was home if there was some systematic way to split it up. What are we in 1950? Am I some kind of stay at home mom whose sole job is to take care of the kids and keep the house? How about some fairness? How about, let me go upstairs a night or two and sleep in Jimmy's room, all by myself stretched out without a hot little sweaty body stuck to me, kicking me and pulling my hair all night.

I used to be a night owl, my whole life I would stay up late, it's when I would read, write, watch a movie or do my projects. Sometimes I just lay there, staring at the clock thinking of all the things I could be getting done.

The best part of the story is, Jimmy feels left out. He wants to be near us because the Doodle is so he plays us like a deck of cards and makes us feel guilty about wanting to sleep downstairs in our room. Oh Gosh No, for heavens sake, he is NOT sleeping in our bed, at least. He sleeps on long leather chaise lounge in our room--grinding his teeth loudly.

Part of me is frustrated and ready to get a room at the Quality Inn because having two kids in your room every night is not fun. Or normal. But then again, we aren't "normal". Then the other part, the sentimental side of me is thinking, in 5 years I will miss it and I will look back on these years and remember how close we all were sleeping in the same freaking bedroom and how even though no one got any sleep and Jimmy has chronic back problems it was kind of nice in a creepy way. The Doodle is my last hurrah. No more babies for me at 42, I was fixed or spayed (or whatever you call it) so I don't have to worry about making this mistake again.

Father's Day

Had a nice and relaxing Father's Day today, spent a couple of hours with my Dad and a couple of hours with my step dad, Bob. I got to enjoy two really nice visits completely Doodle-free. I purposely left the Doodle home, otherwise there would have been no visit...just me chasing him around their houses catching things before they could crash to the floor. There would have been no opportunity for any conversation over the screaming and demands. When I bring the Doodle into an unfamiliar environment, he "hi-jacks" the situation. The show, Dennis the Menace comes to mind.

I, of course, gave Jim a few hysterical cards, a new BBQ brush to clean the grill with and a Lady Antebellum cd. Jim and Jimmy went riding today, they both returned unharmed so that was a good thing. We ate dinner and then we walked the garbages down the road with the kids. Unlike most kids when they grow up, they won't have fabulous and exciting trips and exotic vacations to reflect on, instead, they will remember walking the garbages down the road and back on Sunday nights which is perfectly fine with me.

I haven't seen the Killdeer bird in awhile. He's moved to a different area of the property. I wonder if they celebrate Father's Day in Heaven?

The Seasons of Life

A friend shared this "story" with me; she must be able to read minds or something, because it really struck a chord with me, especially tonight; after hearing some bad news about one of my longtime friends of 29 years...

I had never heard this story before and I have never looked at sickness, trials, tribulations and loss with such an open heart and mind. Thank you for sharing this Doddie...you continue to make a positive and lasting impression on my life.

And thank you RG for being such a bright and positive light and inspiration of positive thinking even when things seem dark. You are a true warrior and will make it through this an even stronger and more beautiful person. xo

The Four Seasons of a Tree

Why you should not judge a life by one difficult season.

There was a man who had four sons. He wanted his sons to learn to not judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away. The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall. When they had all gone and come back, he called them together to describe what they had seen. The first son said that the tree was ugly, bent, and twisted. The second son said no--it was covered with green buds and full of promise. The third son disagreed, he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen. The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfillment. The man then explained to his sons that they were all right, because they had each seen but one season in the tree's life. He told them that you cannot judge a tree, or a person, by only one season, and that the essence of who they are--and the pleasure, joy,and love that come from that life--can only be measured at the end, when all the seasons are up. If you give up when it's winter, you will miss the promise of your spring,the beauty of your summer,fulfillment of your fall.

Don't let the pain of one season destroy the joy of all the rest.

Nothing Feels Better Than...

 

...a clean closet.

...sleeping in.

...hearing your 10 year old say "I Love You Mom" and not want anything.

...finding $16 in a pair of pants.

...getting that parking place right in front.

...remembering why you love someone.

...whipped cream on a real Mocha.

...getting a genuine compliment.

...thinking the Doodle might have just said a real word.

...hearing a song that takes you back.

...a seizure free Doodle.

...a sleeping Doodle Bug.

...being forgiven.

...being able to find your glasses when you aren't wearing your glasses.

...a good long ridiculous cry.

...getting a great deal on something you've been wanting.

...feeling like you've accomplished something, even if was only doing the dishes.

...being on time.

...watching your weight on the scale drop.

...saying NO to something you don't really want to do.

...sunshine and a dose of Vitamin D.

...having a speeding ticket come off your driving record.

...bangs and a bad hair cut growing out.

...setting a new goal after accomplishing an old one.

...a hug from a Doodle in black Converse hightops and shades.

Summertime

It's been a hard week for everyone around here; including the kids. There's nothing better than a mid-day summertime nap to take your mind off things.

Back to Almost Normal

The Doodle is happy. He is back in school, summer school for five weeks and he has mommy back. No more birthday parties or funerals to organize. Nothing to plan right now, no house guests, nothing to create--no invitations, programs, slideshows, favors or pasta salads to make. Just work and a bored 10 year old and over-stimulated and indulged autistic 3 year old for the summer to contend with. I'm not complaining at all, the break from doing stuff feels nice although I feel like I should be making something and completing a task. Maybe I'll finally clean out the refrigerator and get rid of some of the pasta with green sauce and I'm not talking Pesto either...it's mold. There I said it.

We had my brother Tony's son, Anthony, here Saturday night and last night--he was in town for the funeral service and to visit. Saturday night, Jimmy had a sleepover with his cousins. They had the best time, they stayed up until 4:00 am being kids who were told to go to sleep at midnight. I was happy though, no drama and they all got along really well. Jordan, the one on the end with the guitar is my aunt Carol and uncle Charles' 16 year old son and is a really cool kid. I can't believe what a respectful, thoughtful, compassionate and smart son they have at 16. I can only hope that Jimmy will follow in his footsteps.

(left to right: Angelica, Jimmy, Anthony, Jordan)

My nephew Anthony is very talented musician at just 14 years old. Saturday night he went and "jammed" with my Uncle Jimmy's Rock Band, Amnesia--they had a rehearsal and had him sit in and play the guitar with them. It was really cool to watch him play with my Uncle. Last night, he gave us an impromptu concert in the living room. He played his guitar and also played some songs on the piano. He happened to play this song on the piano (this one right here) that is playing now and did a great job. It's one of my favorites, My Immortal by Evanescence. My brother Tony would be really proud of him.

Saying Goodbye

Today was the day. The day of the memorial service for my little brother Tony. I thought it would be easier because 6 weeks have gone by since we learned of his passing yet, it was strangely harder.

It was nice to see so many people gather together in one place who loved him. I haven't been to many funeral services but I would have to say this was as "nice" as a funeral could be under the circumstances. His cousin Rebecca was the Officiant and she did a great job with everything she said and read. We did a slide show of his life and several people got up and talked about Tony and told a story. My uncle Jimmy, my uncle Donny, my aunt Carol, cousin David, his best friend Joey and even my son Jimmy got up there and talked. We gave away St. Anthony medals and Jimmy read a little history on Saint Anthony and what he was known for. It was Jimmy's first death in the family and first funeral. He was brave and did a great job up there in front of a room full of people.

Tony's 14 year old son Anthony is here from Colorado and he played Amazing Grace on his guitar at the service. There wasn't a dry eye in the house. It would have made Tony proud. And, I think he would have been surprised to see how many people cared for him and came out today to honor his memory and celebrate his life. There was a common theme people used when they spoke about Tony. They all said he had a big heart, a famous and wonderful "Tony smile", and generosity and loyalty were his two best character traits.

Today was hard and I'm exhausted. I never realized how physically and emotionally draining losing someone you love is. Even though I'm glad it's over and that we have some closure, I feel there's a void now where my little brother used to be. Because I didn't see him that often, it's not the "seeing him all the time" I'm missing...it's when I think of him or see a picture of him when I realize I will never see him again that breaks my heart into pieces.

He once made me a copy of a Three Doors Down cd, I can't hear a Three Doors Down song without thinking of him so I thought I would play a song for him here. I love you Tony. Thank you for being my little brother.

Looks Like a Good Weekend for ...

• Sunshine
• Sleeping in
• Coffee in bed
• Doing laundry
• Putting on a bra
• Buying Jimmy a new bike
• Picking things up that the Doodle has thrown out the front door
• BBQing burgers and hot dogs
• Painting some junk
• Buying some plants
• Ripping my stupid acrylic nails off one at a time
• Cleaning my closet
• Making really tiny chocolate chip cookies
• Buying some more junk at garage saleswith my mom
• Getting ready for my brother's funeral next weekend, will I ever really be ready for that
• Actually try to write a new post. Sorry bloggies, I've been in a funk and I'm feeling like I don't have anything new or interesting to say...

So, here it is...really ground breaking, edge of your seat stuff going on with us.

The Doodle on Codeine

Why you should keep the codeine away from the children.

Need I say more?