Thursday, November 29, 2007

Top Ten Times when NOT to have an IEP

1. on your birthday
2. on your child's birthday
3. on the "typical" sibling's birthday
4. on your wedding anniversary
5. the first week of school
6. the last week of school
7. the week of teacher conferences
8. when you are having PMS
9. when you can't find anyone to go with you
10.when the inadequate recommendations the SD gave 2 weeks ago start to sound good

Wednesday, November 28, 2007

My car stinks. I mean REALLY STINKS

Java's drinking problems continue. Yesterday I headed to the store with kids and Java and bought a few necessitites. One block from home I heard the sound of glugging, pouring the car.
"MOM! Java's got the milk!!"
Yep. This time she bit into a gallon of milk and it was pouring into the back of the van. When I got home it seemed about 1/2 a gallon was gone. Most of which was soaking in to the car's rugs. I pulled out the extra piece of carpet, sprayed down with the hose and wiped uot the rest wit towels. No go. I think it must take only a 1teaspoon of milk left in a car to get that oh so tremendous sour milk odor.
Today JAva was going for a bottl eof water in the car. I swear we keep water in her bowl at home.

My dog has a drinking problem

Last week as I was driving I heard the sound of someone cracking open a beer. Or in this case a soda. An unopened Diet Peppsi can had been forgotten on the floor of the car and was rolling around. Java, the one year old lab, had just bitten into it and was joyfully lapping at the bubbling geysers spraying the car. I was not so joyful.

Saturday, November 24, 2007

Impulsivity and Slurpeees

According to the clinical dictionary in my head:

An Impulsive act- completing an action before thoroughly and appropriately considering the consequences-such as safety, social appropriateness, outcome etc.

For example:
When at 7-111, turning on the Cherry Blast Slurpeee and sucking it directly from the spout.

Who's the smart one here?

Monday, November 19, 2007

Welcome to my home...I think

Another great read.

Welcome To My Home ... I Think

Hi, Welcome to my home. I think, I mean, maybe you're welcome. I'm not sure yet. When I get to know you, I'll know for sure.

My child is disabled, and I need help to do all the things he needs done. So I need you. He needs you too, because he gets worn out and bored with me and sometimes dislikes me about as much as I sometimes dislike him (please don't start making judgments about me -- we just got started. It's just that I'm honest, and as much as he is the sole reason for my existence, there are times when both of us wear thin).

Your agency sent you here. I called for help, but I don't get a choice of who comes into my home and my life. You come at your convenience, usually between 9am and 3pm Monday thru Friday. I'm on my own evenings and weekends, when my other children tug at me and want and feel slighted and offended and I feel stretched to my limit. You call and tell me your coming Tuesday morning so I put the stack of unanswered mail and the unpaid bills in the cabinet with the cereal bowls, race dirty and clean clothes up and down the stairs, shove toys and unmated shoes in closets and under beds, and run the gauntlet with Fantastic to get fingerprints off everything, and then you call and tell me you have to cancel because of a meeting. Oh sure, I understand, yes, that's fine, Friday afternoon? Well, I was going to try to go to the library and maybe take a nap.... what? Oh. That's the only you have? Well sure, I know it's important that you come. And we really need help. Fine. Friday at 1:30. We'll be here.

My husband resents people coming in and out of our home. He says he feels as though he is living in a goldfish bowl. He says getting help means sacrificing our privacy and spontaneity. He can't scratch his stomach as he walks down the hall in his shorts anymore. Now he has to have clothes on and suck in his gut and put on company manners. And he really hates it after you
leave, because sometimes I cry because I feel inadequate and stupid and foolish and just plain wrong. Sometimes you make me feel that way when you act suspicious of what goes on when you're not here and try to trip me up when we're talking to find out if I really am doing the goals and objectives, or if I'm just taking the money and fudging the paperwork. Sometimes it's nothing you say or do, it's just that your perfectness unsettles my motherness.

Sometimes when you are great I feel threatened and because of others who came before you, I feel judged and talked about, and as though you have met with others and have developed a plan to implement on me.

I can't always tell when you're real, but my son can. So I watch him. If he responds and welcomes you, then I set aside my needs and cares and let you have everything I have, including my son. I have to trust you because he trusts you and looks forward to your step on the porch.

What? Oh, good grief! I forgot your paperwork again! Wait, I know it's here somewhere. I was working on it last week just after the hot water heater burst and right before my husband came home laid off. Wait... I think I wrote on the back when the bank called about the deposit to cover the overdraft. Yeah! I found them! Right behind the peanut butter ... wait, I'll just wipe them off a bit.

You know, I used to be normal. I used to have control of my life, my time, my home. Having a disabled child turned my life upside down. My priorities changed. What I would settle for changed. What I would ask for changed. Who I would accept changed. All that changed because my child needs things and people and ideas and funding. So my life consists of meetings,
regulations, documentation and paperwork, social workers and agency people, policies and procedure manuals and administrative decisions, delays and rumors of delays in checks, people not showing up when needed, people quitting, and people showing up when they're not needed.

Please don't judge me. And I'll try not to judge you. You see, in the long run, if I don't measure up I still am his mother. So we're stuck with each other, and I'm willing to try to make the best of it. Help me to grow, help me to become better. Accept me as a person, not some perfect saint. I really DO know my child better than anyone else, so help me express that and put it
to best use. Walk with me a ways, not to judge me, but to understand my role within the heart of my family. Give me tools and words and people that, like pieces in a jigsaw puzzle, interlock to allow for my strengths and compensate for my shortcomings.

Please don't push me past my endurance, because if you do, you'll see me at my worst; short-tempered, impatient, inflexible and emotional. I'm no good to my son then, either. Each one of us has that fine line. I try to recognize when I'm approaching my line, and usually that's when I'm most cranky and complaining to you. Please realize that one facet of me is the tired bitch, just as real and acceptable as the superwomen who overcomes unbelievable obstacles. There are sunny days and then there are
thunderstorms, all part of a temperate climate.

Well, anyway, hi. Welcome to my home. I think.

By Sharon Burleson
Clarksburg, WV

I will remember article

I found this today, enjoy.


On Friday, June 15th, 2001 my son, Ben, graduates with his sixth grade class from Brandon Elementary School in Goleta, California. For my family, this will be a day remembered long after most memories fade.

The sixth grade students will stand proudly on stage, each looking out in the audience searching for their parents, and when the eyes of parents and child finally meet, big smiles will appear on everyone's faces and hands will wave.

Parents will look to whoever stands next to them and say, "That's my Johnny," or "Doesn't my Melinda look so beautiful," and "Which child is yours?"

Ben won't be looking for his father or me; he will just know we are there. We won't wave, because he wouldn't be able to see if we did. But he will know the pride we carry in our hearts and in our souls - he will feel it.

Maybe, I'll wave anyway.

As other parents yell out children's names trying to catch their attention for the photo opportunity that will grace the pages of the family album for decades to come, Ben's father and I won't yell out. Ben wouldn't hear it if we did.

But, that's okay. A camera cannot capture what Ben's fellow classmates feel about him as a valued friend and neighbor.

Maybe, I'll yell out his name anyway.

Ben's father and I will almost certainly be sitting with dozens of other proud parents, tears collecting in their eyes, as they reflect upon all the years that preceded this momentous day and what it took to get there.

It was probably a hard road traveled.

Some parents will be fantasizing of the rewards they shall reap from the commitment to their children's education, imagining a future with a Nobel Prize winning scientist, a famous surgeon, or a high-powered lawyer in the family. Others will be thinking about the symbolism of the ceremony - their child's biggest step so far toward independence, self-sufficiency, and adulthood.

After all, that is what parents are supposed to prepare their children to achieve.

My thoughts will be elsewhere.

It wasn't long ago that Ben's participation in the regular classroom of his neighborhood school was not possible.

Thirty years ago Ben would not have had a chance to know about school because a public education was not available. Ten years ago Ben's only choice would have been a classroom for the "severely handicapped," far away from his neighborhood in a room at the back of a school campus, where his peers would never have known he existed.

Ben's graduation on Friday will be symbolic of tremendous change in how people with disabilities are perceived and Ben has made contributions toward this change that will likely never be rewarded, touted, or even acknowledged the way academic excellence is.

But Ben doesn't care and neither do I. Not much anyway.

Ben's reward is that his life has helped shape the future for other children with and without disabilities and someday all children will become a natural part of the human experience.

I plan on living to see this day.

As we watch our children in the graduation procession, I will remember the years that have passed since Ben's first day of kindergarten when he lined up with his new classmates to enter their classroom for the first time. The teacher said to each child, including Ben, "Welcome, I am so glad you are in my class."

I will remember when a parent ran up to me on the first day of fourth grade and said all her daughter could say to her was, "I finally get to be in Ben's class."

I will remember the day the principal said to me, "Terry, I have been getting letters from parents requesting their children be in the same class as Ben. What am I going to do? I can't possibly accommodate all the requests."

I will remember all the kids that wanted to be Ben's roommate on their adventure to Astro Camp last year, and seeing Ernesto hold Ben's hand as the class watched a movie in a Hollywood theatre last week.

I will remember when Isaac accidentally broke Ben's hearing aide case, and he asked his grandfather to drive him downtown to buy a new one. Isaac waited in the school parking lot the next morning and when Ben and I arrived, Isaac ran up to the car, new case in hand, and said, "I know how important this is to you, Ben."

I will remember the look on the on the faces of his classmates and friends, when he pushes the lever on his new wheelchair and slowly rises up to stand tall next to the friends he has learned to love and appreciate so much.

I will remember.

I dedicate today's column to Steve Minjarez, the director of Pupil Personnel and Special Services, Goleta Union School District. You made it possible.

Terry Boisot is the parent of a child with disabilities, serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States, and is the Chair of the Board of Directors of TheArcLink. She is concerned about all disability matters and welcomes comments at

Lucky Me

Two of my dear friends are about to PUBLISH a BOOK. Not only are they dear friends, they are very, truly kick ass amazing women. They are:
jennyalice at
squid at

They started the blog site "Can I sit with you".

The book contains short stories from all varieties of people about growing up and the harships of sand-box politics. Many of the writers work professionally or semiprofessionally. Or atleast blog like crazy. That would be me. My story is titled, "MENS-TRU-A-TING".
The amazing cover art was created specifically for the book, and was donated by a professional artist. The cover design, also donated by a professional. The proof reading and editing? Yep, also donated by a number of people. Actually SO many people volunteered to edit and proof that some were turned away.
The book will be available in the next week or so from LULU Press(google it) and shortly following that will be available on Amazon etc.
Title of the book, same as the blog, "Can I Sit With You?"
It is a paperback, and is 126 pages. Cost $14.00
But the BEST, most TERRIFIC part is that 100% of the profits will go to SEPTAR (Special Education PTA of Re City). That is the PTA I was involved in starting just about 1 year ago and for which I am currently President.
I am in awe of what so many people have done for this project. The fact that jennyalice and Squid are turning over ALL profit to SEPTAR is also stunning. And I'll get to say, "I'm published." Of course I wrote about having my period, but there ya go.
So, go forth and purchase this book in the next couple weeks. It is designed for kids up to ages about 13 so that they can understand they are not alone in the madness of sand-box politics and growing up. A very good read for adults as well. Becuaswe each of us have a story or two. Check out the blog. And in a couple weeks, BUY IT!

IEP update

I didn't hear from the school district after my screaming spat where I yelled and snarled and concluded with, "We don't need to talk anymore. Just let me know what you have to offer and if that doesn't work we'll go to mediation!!"
I picked up Aj from school on Fri and while he played on the playgorund I looked in his backpack to see if his aide had written a note. I found a large envelope stuffed with paper. Inside was the IEP docs that we never signed (for attending even, because I was raging). The entire triannual docuamnt was numbered over 90 pages. I just stuffed it back in. Later I got an email saying that it contained additional goals and recs (we were "discussing" the need for social skills training). We are on break for a week. I'll dig that out another time.

Saturday, November 17, 2007


This morning I took Granny and the kids to the farmers market. We bought a pastry and coffee and sat in the courtyard in front of the county courthouse. The huge courtyard was filled with tables and chairs and empty of people. As we packed up to leave I glanced about for Aj.
There he stood mid-courtyard facing the American flag, right hand clapped over his heart. And for his own pleasure and patriotic spirit, he sang the National Anthem at top volume and mostly off key.

Sunday, November 11, 2007

AJ is Nine

Aj had his b-day on Th. And now my boy is nine. And he loves all things sports.

I took him to school with his rice krispie treats and some of the kids and a Mom carried on saying happy birhtday to him. Pops and I picked him up after school. Then it was home for some homework. At 4 pm Pops took him to soccer practice, which AJ loves. Ki and I then made cupcakes for him from the mix and frosting she had previuously picked out. After being home and bathing I asked AJ if he wanted to open his presents.
"No, after dinner."
You see, that is what we must have done last year. Which means it is now a routine. Or to sound more "typical", a tradition.
We had dinner at the Lobster Shack,
Aj had chosen this spot for dinner because he thought he could get shrimp. And he did. A whole huge adult serving of fried shrimp and fries, plus a soda and some of his sister's dinner.

Pops was really the superstar about b-day gifts.
When I asked Aj what he wantd for his b-day he said an NFL jersey and nintendo.
Granny is from San Diego, so Aj keeps her posted on all San Diego teams and how they are doing. Well, Merv's had a San Diego Chargers jersey with the name of some guy you'd know if knew football. We had Granny give that to Aj. Oh the joy! What an excited guy. He keeps taking it on and off. He is saving it to wear the first day he is back at school (after Veterans Day). Every few hours he shows up with it on and he has stuffed things in it to look like shoulderpads.

Aj told us last year that he wanted to go to a Warriors game. Pops remembered and got a pair of tickets for the 2 of the two of them on Dec 7th. Aj was beside himself with excitement. They were worth every penny. You can look for him at the Dec 7th game against the Miama Heat.

Other well received gifts were new baseball cards and a CARS video game that Pops ordered for him.

It was so wonderful to have Aj request specific gifts, be able to get those for him and then see his incredible joy.

Saturday, November 10, 2007

Seems she HEARD me

Well, anyone still on campus heard my tirade.
But the good news is, it seems Ms Pine, AJ's teacher, heard me. Or someone did. Right after the IEP Pops and I talked with the principal and I told her that we had specifically requested not to have this teacher when we met with her and the VP in the spring, and that I was certain the 2nd grade teacher and inclusion specialist had done the same. I said that I felt deceived. This all with tears. I also added that the teacher had never said anything nice about my son, despite my Max assist cues.

The IEP and my crazy-lady performance (see previous entries)was on T. On Wed, I sent the email apologizing for "raising my voice". Which is a nice way of saying "crazy-ass screaming". On Th it was AJ's b-day. I showed up with the rice krispie treats Ki and I had made for AJ's class. I asked her where to put them and we made brief eye contact. I still felt miserable when I left.

On Friday morning AJ woke up with a sore throat and headache, so I kept him home. I called the school and let them know. I didn't bother to email the teacher.

Ms Pine, in her inability to be a sensitive person, is in many ways an excellent teacher in terms of academics. Every Friday evening she puts in our mailbox the homework for the entire up-coming week. This gives us a chance to get a jump on it. When I went to get the home work this Friday there was a hand written note on top.
"Dear Aj,
I hope you feel better soon. Stay warm and get some rest. See you on Tuesday.
Ms Pine"

She also has a weekly newsletter that goes home to the parents. Often there are photo's on it. This week one of the 2 photos was Aj. And finally, she wrote a somewhat nice note on his rough draft for his upcoming presentation.

I see she is trying. I think the ironic thing here is that basically, she herself seems to have some social issues.

Thursday, November 08, 2007

What did I say?

Well. If you are curious, I will tell you what exactly it was that I said in part of my "crazy lady" spew at Aj's IEP.

History: AJ has PDD-NOS (pervasive developmental disorder, not otherwise specified) and ADHD (attention deficit/hyperactivity disorder) among other things. He is in a regular third grade class with a full-time aide. In the past teachers and therapists have reported that they have really enjoyed him.

Not this years teacher. AJ is struggling in school. Third grade is notorious for being harder and being a spotlight time for any kids having difficulties. i have met and talked with Ms. Pine about 4 or 5 times. Sometimes in an IEP and sometimes not. She goes on about how "zoned out he is", how "he just isn't really there." Now these things are true. But she goes on and never, once ever, does she say anything that could remotely be considered a compliment or positive comment. This even after I sat alone with her one day and said through tears, "As a Mom, if you could think of one good thing to say about AJ, it would really, really help me out." No go.

So after 2 hours in the IEP of reading her negative body language and hearing more negative comments and her defering to the "specialists" as if she had little or no role, I was wearing thin. At 5:30 she started to pack up her things to leave this fun party with a guest list of 8.
I looked at Ben, who was running the meeting and said, "Is the meeting over?"
This was really kind of a passive aggressive comment on my part-as I knew it wasn't.
He started, "Well, I..."
Then Ms Pine said, "Come on guys. I am really tired." And she stood up to go. Like we were all burdening her by discussing AJ.
She said that to a table full of professionals, and us.
It was then that I snapped.
I stood and started yelling. Yelling in that kind of out-of-body, is-that-really-me kind of way.
"YOUR tired. Well go ahead and go home. And while you are there, think of something nice to say about my kid! BECAUSE YOU NEVER HAVE!"
Then I proceeded to carry on and wasn't quite as on target.
Earlier today I sent an email apologizing for raising my voice. I did not apologize for what I said. But I doubt that nuance was noticed.

I get to brag

Today in the mail I received our family holiday card for the year. I made them on Shutterfly and they have family photos and a personalized message. Yep, November 8th and I have the cards. Next week I will get the cutsy return address labels with cartoon people of our family and pets.

Now the reason I get to brag is that I have never once, ever, been so on top of it. Those of you who know me well, know that I specialize in running late and procrastination. Those of you who have known me for over 11 years know that I was late getting to the alter for my own wedding.

So this is big. All of use in the quirky family tribe get to brag and celebrate when we pull off a feat that is beyond that of even most typical families.

Wednesday, November 07, 2007


Lots in my head and heart.

Aj is 9 tomorrow.
-as he ages, the differences between he and his peers becomes more apparent.
I feel sad.

Someone pushed him down at soccer practice today.
-I always go to the fact that it is because he is different and that this boy wouldn't have done this to the other team mates.
I feel sad and angry.

Aj is yelling and calling me names and homework can be a struggle. He hit Ki again.
-I yell and scream. Ki cries.
I feel angry at him, angry at me, frustrated, guilty, and emotionally fatigued

I am holding a prescription for ADHD medication for AJ. Pops and I have had it for a week. I am having a tough time taking that in to be filled. I never wanted to put him on meds. Intellectually, I think it is a good idea. But emotionally, I am having trouble. I didn't see this coming.
-I feel surprised and sad

Yesterday was part 3 of AJ's triannual IEP.
I went postal.
I lost my head and had an out of body raging experience in front of 7 other people.
Let me restate here that I am not exaggerating. It was ugly. Really, really ugly. People who, I think, use to respect me. Now, surely think I am nuts.
It has been over 24 hours since and I still have a headache. I don't think that the relationship with his teacher can be repaired. Given that AJ's b-day is tomorrow, I am not sure how I am going to get the treats to his classroom without having to interact with her.
-I feel angry, sad, deceived, embarrassed and somewhat hopeless about how I will get through the school year with this teacher. So many tears and heaviness.

Pops is an angel. The other blessing in all this are the friends I have. Friends who get it because they live in the same type of fun-house I do, -or at least friends who hold me in my sadness. Last night after IEP I went over to jennyalice's house and sobbed. I had to tell her first that no one had died or was hurt, but that I was just so very sad. I just couldn't go home. the kids would notice how awful my face looked from crying. And I just could not face the evening madness, the constant question repetition from Granny. I went home before kids bedtime and went to sleep with them in our bed. I love sleeping with my kids. I have slept a huge number of hours and still feel so tired. Emotions are so tiring.

What am I going to do tomorrow with the damn rice krispie treats for AJ's classmates?

Ki has a friend

Ki has always had difficulty making friends and playing with other kids. She is a tom boy thru and thru. She doesn't want to play with other girls who "act pretty". Which rules out the majority. A couple weeks ago she took up with a little boy in hr class. Now she and Mike play together at every recess. Having met this boy and talked to his Mom. It is very likely he has Asperger's, or is Aspy like. I guess she goes for what she knows. I am glad she is enjoying this friendship.

Monday, November 05, 2007

An AJism

On one of Aj's regular phrases.
"AJ, how was your day?"
"Oh, it was quite nice!"
What is the guy British? I don't say, "Quite nice."
One thing I have noticed is that when asked a question about how his day was or his teacher or any thing, he is eternally optimisitc. He describes all situations as "great", "good", "awesome". I don't know if he doesn't recall the marginal or indesirable events- or he just isn't too phased by them.

Better than Thin Mints

Candy Cane Jo Jo's from Trader Joe's. Oreo like with creamy peppermint candy cane filling. Yum.