"I have the ____________"

I am so blessed to have such a fabulous group of women in my tribe. I feel your love. I'm much better now. It helped to be able to work thru it partly by just crying and verbalizing my sadness. Plus the fact that I feel I am moving in the right direction toward clarifying AJ's "clinical profile" and what we can do to help him be the best that he can be. Last night hubby listened and cared and shared my sadness. I took care of myself today and called one of you soul sisters for lunch out, another one of you called and let me dump my sadness on you, and Angel Sandrini happened upon us today and we also shared a dinner out. Tonight at park night for the tribe I just flat out told a lot of people that this was one of the hardest weeks and lowest points I've had in awhile. I never really do that. I usually just maintain my happy face and don't share. But some of these Mama's have been good models for me recently by reaching out during their dark times. It felt good to put it out there. All of us Mama's get "it". When I talk about how sometimes everything that is hard or sad about our kid(s) gets or feels really bad and it is all upon you at it's worst, all at once. It's like you accidentally quadrupled the regular dose of life-shit. The regular dose is doable, not always good, but do doable. But this quadrupled dose leaves one on the verge of needing to call poison control. This ugly "it" needs a name. I think if it had a name and we could throw it out quickly, we'd be more likely to tel others about "it" and thus, take better care of ourselves. . Friends we need to name it so we can just call, type or say, "I have the _____" or "I am just getting over a really bad _____",or "I feel a _______ coming on." Names?????

Sometimes...

Sometimes the sadness about what life has dished out to my loved ones sucks the liquid from my soul and I feel like I'm shriveling.

The First day of school

Tomorrow is the 1st day of school. I have been stressed for awhile now. this is not a good time of year for many of the Mom's in my tribe. For Leelo it is a new teacher and class that are farther away then he has ever been. Double trouble is happy where her boys are-but wrote that the beginning of the school year is another reminder of how atypical their lives are. Bea's son is going to new, academically advanced, school-which should ideally be good if doesn't experience too much anxiety from it.

My son ended up in a class with the teacher Ms Pine. When ever I tell people who know AJ and know or know of this teacher the exclamation "Oh no!" escapes from their mouth. I am catching on that myself, the prior teacher or the inclusion specialist having putting in preferences (i.e., not this teacher or this one other)- does not matter. He was still randomly assigned just like any other kid. I think the same is true for Signora's son. And complaining on my part just ends up in comments b=about understanding my concerns and setting up meetings, but no changing teachers even though the year has not started. One of the 1st grade teachers this year was AJ's 2nd grade teacher last year. It would've been perfect to have her take little boy M. Ms Pine gives detention if you don't COMPLETELY finish all your homework. And that she gives lots of homework. I emailed har and other members of the team my 4 page "Getting to know AJ" dissertation. In it I put it is not appropriate for him to get detention for not finishing homework. I also wrote that in the past I have at times modified the homework in volume and skipped certain parts or done them orally. One of the reasons being that it takes 2 to 3 times as long.
On Saturday the phone rang and it was MS Pine. She was calling to say hi to AJ!! They had a nice chat-she asked him about his summer and what he did. She said she does this every year with all the kids. I was impressed! She said she had gotten my email about AJ and read it and would reread it again. Also, she said there would be a raffle in her class for those who turned in summer homework. She said she didn't want to mention it over the phone and upset him. Also nice to hear. She sounded kind and friendly about Aj on the phone. We later ran into her at school and I introduced she and AJ. She walked up to him and said, "Hi, do you shake hands?". Of course AJ, who will be a professional greeter as an adult, loves shaking hands. So they shook hands and he introduced himself and they chatted a bit. I said that we had been over to read about the supplies list and that AJ read it to me while I wrote it down. "Oh you read it!", she said.
So at the end of Sat, I felt better. But I also realized that she doesn't know what he is capable of. These full inclusion kids are a mystery for these regular ed teachers. I think even a bit scary-the teachers just don't know what to expect. Even with my 4 page dissertation. But, to be honest, as a therapist and parent, I am good at identifying and listing differences-or weaknesses- so he comes of sounding VERY involved, when meeting him he doesn't seem that way.
I want to believe that it can be beneficial in a way for a kid to come into a class with a label. I think it may have been harder for a few of my friends kids in the past who were quirky or different, but not labeled/diagnosed or in the SPED system at all. I don't think they were cut any slack by teachers who were black and white thinkers (like the above). With AJ and little boy M., I am hoping that since the teachers know there is something going on-they will be more patient, lenient and loving. I was just thinking that I guess I shouldn't be surprised that the teachers have never minded how and that I have modified Aj's homework at times. I am reasonable and clearly get his strengths and weaknesses AND it means they don't have to do it!

I am also stressed about upcoming tri-annual IEP. I refused to sign the consent to test until the team told me what test each of them were giving and it's purpose, and that the other team members knew also. I sited our prior experience (not with any of these individuals) where the OT and psych gave the same test without knowing it!!! I don't think they ever talked to one another prior to the IEP.
It just doesn't seem like the proposed testing will be thorough. Inclusion spec does not respond to my queries about how they will be testing social skills. In fact, I just looked at the form and that area is not checked to be tested. But AJ has been receiving social skills group (not really, he just checks on him on the playground, but it is on his IEP). Nice avoidance technique on his part. he seems good at that. He ignores my queries that he doesn't want to deal with.
I need to go read Harry Potter. I'll never sleep with all this racing around in my head.

Midnight

I feel better. I got a chunk of stuff done tonight for special PTA and regular PTA boards I am on. And I sent off emails to professsionals about AJ. I have been avoiding seeking out further evals for him and touching base with school/spec ed about school year. I hate confrontation-so easier to avoid.
I heard about a pediatric neuropsych who is new to town but has 10 years of experience. She is also a Mom. I contacted her about evaluating AJ for ADD/ADHD and anxiety or whatever he's got along those lines. She sounded friendly and intelligent on email. Whatever that means. She is new here and trying to get her name out, so I feel like that alone means she would do (or attempt to do) a bang up job on an evaluation knowing how connected I am in the community personally and professionally. And she probably has more time and energy than the butt-rammed professionals from other large clinics and hospitals. It is all speculation who knows.
She has also done work (research) on temporal lobectomies, which is a procedure that is sometimes done on people with an uncontrolled seizure disorder. I have evaluated a few of these patients in the past at Stafford Hospital. Pretty crazy that you can have part of your brain resected and sometimes, be no worse for the wear intellectually.
I also asked if she would be interested in doing a talk for special PTA, and she would. Yipee! I just wrote so I am waiting to hear what topics she might be interested in doing.
Got my name in print again. My only concern is that by doing these interviews and being the president of Special PTA, I am outing my son more. I am not sure if I am helping or hindering him.
Check it out.
http://www.insidebayarea.com/sanmateocountytimes/ci_6663560
Last week of summer...

The new school year

I am feeling a bit overwhelmed about the new school year. You know-overcommitted, (PTA, SEPTAR, etc, work). Tight daily schedules. Early mornings... I don't know who AJ's teacher will be. Lots of homework this year. Peers. Worries over kids teasing or being unkind to AJ. Ki needs some friends...
You in the tribe, you know what I mean. Last night I had a dream that I fully remembered when I woke up. I was replayed it in my head for awhile.

I was with 2 friends from long ago and we were in a motorhome of sorts. It was raining and flooding. The flooding was increasing and we weren't sure if we should go South to our home and collect our belongings first or go North to safe and higher grounds. There was debate and conflict among us about this. Then the flooding worsened and was approaching the window level of the motor home. It seemed like we/I made the wrong decision about which way to go. We were stuck in unmoving traffic with no where else to go.

Then one of my kids, husband or a dog woke me up.

Pretty intense dream. Later I recalled that dreaming about drowning and flooding is an indicator of feeling out of control of your life. Very wacky dream. mmmmm....

One more week of summer.

I didn’t get to a number of things I had hoped to:
AJ (and Ki) still can’t tie their shoes.
I never ended up getting AJ tutoring over the summer.
We didn’t do as much math and reading etc as I had planned on, especially for AJ.
AJ had only 1 play date, or maybe no playdates, with a typical kid. (Not counting family type get togethers, and that was only 2 or 3.)
He no longer has and doesn’t know how, to ride a 2 wheel bike.
Ki doesn’t know how to ride a 2 wheeler.
Ki had only a handful of playdates.
No work on hand writing for AJ.

Things I am pleased about:
Trip to Pajaro dunes
Trip to Sac on the train and spending the night there
Trip to Arnold
Day trip on train to San Jose
Kids going with Sandrini to the Discovery Museum for the day
Trip to the Zoo
AJ, seemingly, successfully attended and enjoyed day camps for the first time:
Soccer camp
Baseball camp
Out door camp (twice)
Ki successfully attend and enjoyed day camps for the first time:
Sports camp
Beach dancing camp
Camp at Safari Run (with a friend)
Soccer camp (with a friend)
Time spent having kids swim at the lake and pool.
I eeked in swim lessons for both in the last 2 weeks of summer.
I got a Sponge Bob typing program and AJ has been playing with that. His writing is so poor we will need to be adept at keyboarding.
Teaching the kids how to play Yahtzee. This has been a great family game and they practiced their math.

I can't make a straight line

I made Rice Krispie Treats. No matter how often I slice off a piece, I can't make the edge straight. Then I have to carve off the offensive piece that bulges out, again attempting to even out the whole so it will have a straight edge. I am persistent and neat. I make sure none of those haggard edge pieces are left littering my kitchen.

Saint Martha Fucking Stewart was at MY house!

I just returned from our family vacation. Jennyalice volunteered to care for animals and plants.
I spoke to her this afternoon before we got home. She had been cleaning the poop out of the guinea pigs cages!!!! AHHH! No no no. I only do that once a week. This from a woman who is somewhat unnerved by the fellas.
I returned home to find gifts of veggies, milk, croissants, bread, salami and makings for root beer floats.
Then, get this. Laundry. Laundry, sheets and clothing, clean and folded and ready to be used!!! She did my laundry!!
Clothes! She cleaned out her closet and left me clothes she doesn't wear any longer. She has nice clothes!

But the piece d' resistance. SHE CLEANED MY REFRIGERATOR! Now this is a present of presents for anyone. But my refrigerator was getting to the point that I figured it would be easier to replace it, than clean it. Ahhhh, a small corner of my soul feels cleansed.

I'm obsessed

I am obsessed with buying a place up here. It is so fabulous I can't get over it. The most beautiful, darling lake with paddle boats, kayaks, docks to jump off, sand for building and sleeping on, playground. And driving access to fishing, hiking, state parks. The Stanislaus River. HUGE Lake Alpine. Many places for water sports. Not to mention winter sports of downhill and XX country skiing, sledding etc. Forest, forest, forest. peace, peace, peace. Calavaras state Park (10 min away) has daily Jr Ranger activities. Kids loved it. Cute town of Murphy's nearby (We have not actually visited).
So we are on day 4 1/2 of NEVER having the TV or VCR on.
I am reading real estate ads with Pops. We've got to make this work.
Need to come up here with some other families in the future. This lake has a shallow swim area with lifeguards.
Anyone want to go in on a house/cabin??? We need about $35,000. to $500,00. total. Some come already furnished!
Packing tonight and home tomorrow...:(

Day 3 and the tribe’s uniform of orange Croc’s save us

A few weeks ago the family went to REI specifically to buy CROC clogs for AJ. We needed to replace the pair of knock-offs that had finally fallen apart. The only ones in his size were orange. That was fine-so we purchased them. I laughed to myself because two of our friends who are 6 year-old boys with ASD also have and love their orange CROC’s. It was beginning to seem like this was some unspecified uniform for the tribe..

Mid morning today AJ went outside and I hurled after him, “Stay on the deck.” Of course 5 min later he was down by the lake throwing rocks in. I called him back up and reminded him to stay here. I then took a shower. When I got out Granny was in her room putting things away. I forget I need to be so concrete as to remind her to look out for the kids when I am in the shower. That logic doesn’t come to her spontaneously any longer. But most often she is obsessed about where they are if she can’t see them. So I hear, “Judy where is AJ and Ki?” all day. Even when all they have done is gone into the bathroom. So today I asked her to call for him from the deck. Which she did, and did and did again.
“Okay, that’s good Mom,” I snarked in a snitty tone.
“Well, he hasn’t answered.”
“Well, he rarely does. He is probably down at the lake. I just need a couple of more minutes to get my clothes on.”
“I’ll call him some more.”
No, Mom, don’t.” I was thinking, my God sound travels here and the hysterical screaming Grandma is not what the neighborhood needs. That and I am pissed that I have to invest energy, time and emotion into looking for him when he wanders. I know he can control the wondering better than he does. I hate feeling sucked into a panicked search mode by him.
So I finished dressing THEN I walked out on to the balcony scanned around, and bellowed
”AJ”. Nothing.
Again.
Nothing.
Now I am feeling concerned AND calling him bad names in my head. So I take Ki and we head down to the lake. Granny, who has multiple joint arthritis, COPD (emphysema) and a cold says she is going to head up the street. I walk along the lake and think if he was at the shallow edge, he may have fallen in and hit his head and drown. So I am scanning the waters edge. We get to the lakes dam and a Mom looks at me with concern. Obviously she has heard me calling him. So I ask her, “Have you seen a little boy in a green shirt?” She ponders, but maintains a vague look.
Shit, I thought to myself. Of course today he has on this non-descript green shirt with a couple stripes on it. I brought bright blue, neon green and orange shirts on the trip because I feel safer dressing him in bright shirts. But he is not wearing one of those.
“Does he have orange shoes on?”
‘Yes!” The recently purchased orange Crocs from REI.
“Oh, I saw him way up the road he was just walking along peacefully.”
“Okay, thanks!”
I feel fine now because I know he is away from the water and I hear someone calling my name. Ki and I head up the road to the cabin.
Of course by then Granny and AJ had returned to the cabin and headed down to the lake. They catch up with us in a few minutes. I realize I need to figure out how I am going to handle this. Yuck. I hate discipline. So I tell Ki that I might make up a little story.
AJ,”Momma, I’m sorry, I got lost. I didn’t know which cabin was ours. “
Me, “And how did you feel when that happened?”
AJ, “I was sad.”
Me, “Were you scared?”
AJ, “Yeah, a little scared too.”
Me, “Well, I was really scared. I thought you had fallen into the lake and died.”
AJ, “No, I didn’t died.”
Me, “I know and I’m glad. But I was really worried. So I called the police.” (I didn’t)
AJ, “You called the police?”
Me, “Yeah and they were REALLY angry that you had wondered off.”
AJ, “Oh.”
Me, “So now you have a 20 minute time out.”
Now I’ve put AJ in time-out before and usually just the mention of one yields verbal raging that then continues on with me just increasing the time. I told him to go into the room Daddy and I were sleeping in, to look at the clock and to come out at 10:46. I removed the 2 magazines. And the windows don’t provide a view. He readily walked in and lay on the bed. He was ready to put in the time he knew he’d earned, no raging here. And 20 minutes for a guy with ADD/ADHD is an eternity. Ki and I then went for a walk and left Granny at home as well. We returned at 10:45. I leaned in and AJ was still sitting on the bed.
“One more minute, then come out.”
10:46 am, “Hi Mama, can I have a root beer?”
“No, not now. We’re gonna walk to the lake in a minute.”
”Is Granny coming?”
“No. She’s had enough exercise this morning. Daddy will bring her when he drives over later.”
”Put your Croc’s on. It’s time to go”

It's kinda sick, but I'm doing it anyway

I am on vacation and there is wireless at the lake. I mean AT the lake. I am sitting on a deck AT the lake while I am hooked in. Kids, Pops and Granny are 25 feet away on the beach. But really, can working and blogging be more enjoyable than this?

A saved entry:
VACATION-Night One

A decent drive up here. We are in Arnold. Specifically, we are at a cabin in a community surrounding a small lake, Lake Mont Pines Lake. So peaceful and quaint. We ate dinner outside on the deck. After dinner the five of us played Yatzee. This was the first time our family has played a game together. A big leap for us. AND we didn’t watch ANY TV or movies since arriving. Amazing.

Day 2
Kids and Pops went for a walk and threw racks into the lake in the am. We are working together to remember the various animals we see on the trip. On their walk they saw a snake (yellow and black stripes) and a blue Jay. We drove through Arnold (we are just south of town) and up to Bear Valley. We bought sandwiches in the lodge there. Back into the car and we drove up to Alpine Lake (alt. ~7,350 ft) we had a picnic at the lakeside. A big, beautiful lake. Huge granite boulders surround it making for great boulder scrambling. We missed our girls (dogs) when we saw 2 golden retrievers playing fetch in the water. Various water crafts were out on the water and available to rent-kayaks, canoes, small motorized fishing boats and sailboats. There were also some larger motor boats. Fortunately, I don’t think you can ski here. The camping sites are right on the water, tremendous sites. Given, of course, your kids are water safe. We then drove further up to Mosquito Lake and then back to our place. All of us took a nap and then headed to the lake for a late afternoon swim. Back at the cabin we had burritos for dinner and surprise root beer floats for dessert. AJ has been obsessed with root beer floats lately, so we surprised him. We had another family game of Yatzee, and then the kids went to bed. Pops is so good with the kids.
NOT ONCE TODAY, NOT EVEN FOR A SECOND, WAS THE TV ON.
Don’t get me wrong here; I am not in Utopia (except for the TV part). AJ is still having occasional ragers, Ki whines on and Granny repeats herself. But it is all less and we are all, generally, quite happy.
I want to buy a cabin here. Seems like an ideal place. The lake(s) offer lots of fun swimming and boating stuff and there are tons of hikes to take. There are places to go fishing. You are close to skiing without living in tons of snow. Also, the town is enough of a town. There are restaurants, and a big grocery store. Even a couple Cafés! So if you have a couple hundred thousand lying around-let me know.

Vacation

We are heading out of town for 5 nights! Kids, Pops, Granny and myself. We rented a cabin in Arnold, a small mountain town with a nearby lake. It will be HOT, 95 and up. I will have to work om my body hair issues and don my yet-to-be-worn bathing suit. I am looking forward to a vacation that is designed to be relaxing. We can play games, go to the lake, go for a drive, read, read, read. I just bought a mindless comedy-mystery book. Perfect. Everything else I picked up was along the lines of "the family is all lovely and fine until...then they go to hell and back". No thanks. Just don't really need that. The kicker is that my TV addicted family will have to cut the cord. No TV. There are movies, which I'm sure we'll OD on, but no TV. So no baseball, cartoon network, Disney Channel etc.
I most likley will not have internet access. And I am addicted to checking e-mail and my budddies blogs. My family is probably cheering that one. I'm still going to take work and try to get current on some stuff. No biggy, I like it. Jennyalice has agreed to care for the guinea piggies and cat and plants. No small job. Expecially when considering she jumped backwards in response to my holding up one of the piggies for to admire. Admiration isn't the word I'd choose for her feelings about the boys. Java Puppy is back to the trainer and Beautiful Brown Sierra will go to the in-laws. I tried to give her to a couple families I know that have had big dogs previously and are Sierra admirers, but all are out of town. She'll be fine. But not as many potential fetch games or loving sessions.
Now that I am an adult, or so I am told. I realize that vacations are always a lot of work for the Mommy in the family. SO MUCH packing. And remembering what to pack. With 5 of us and the need to bring towels (beach, bath and kitchen), pillows and sheets-we are going to be packed to have breathing room only in the car. I'll miss hearing from my buddies...

Tomato Sandwiches

Squid (a friend) told me about the tomato sandwiches she makes for her family in the summer. I am currently scarfing down my second meal of tomato sandwichs.

My take on it:
Italian slipper bread, sliced
thickly sliced tomato
pesto (in a jar from Trader Joes)
mayo
salt and pepper

combine into open faced sandwich

SO very good

Why is it ...

AJ has trouble following the directions, "Put your shoes in the basket and go in your room and get 2 pairs of socks".
But he can tell me,
"Today we drove past Aunt Mary's house. We took 680
to 24
to 13
to 580
to 238
to 880
to 92
to 280
and then home."

Update on my face (see prior post)

When I looked in the mirror this morning I was greeted with:
- a right eye more swollen than from the previous day
- The "scrapes" on my right eye lid more prominent
- "scrapes" on my left lid that I hadn't realized were there
- scabey sores all over my upper lip

I look like a diseased, beaten woman.
I did the waxing so I would "look better"(?)
So the question is, do I tell the mothers of my clients why I look like a diseased-beaten woman? I don't typically discuss my body hair issues with just anyone. Then again, who wants there child alone in a room with a diseased-beaten woman? ...mmmmmm

Hot mama's

You just never know what might happen when they get together.