Tuesday, June 27, 2006
Kristin needs to show some modesty when wearing dresses.
She is also very sensitive.
Nothing was stated about my easy going nature, wonderful imagination and willingness to please..anyone. It seemed the criticism that was so heavy at home followed me to school, even my first experiences in preschool. I brought the report card to my mom knowing there maybe consequences for my actions. My parents bedroom was Strictly forbidden to go into, let alone to riffle through personal affects. Down the stairs I went paper in hand.
Mom was making cookies and watching One Life to Live. I sensed she was in a good mood. Being sensitive does have some perks. I can easily read people through the smallest gestures, elevations in the tone of their voice and various other minute clues. I am one of those people that always say "Did you see that?" Or "Did you hear that?" and the common answer I get is "No." "What?" and they could be standing right next to me witnessing the same thing. I guess I am like an X- Man, my powers would be to read people's initial thoughts and feelings. I know some already have the ability to read minds, so....I guess my powers are obsolete. Shucks. Anyway...
My mom takes the paper, smiles,remembering quietly to herself.
"What's this part about modesty?" I asked
"Oh, when you wore dresses,you were always showing your butt when you bent over." She said in passing, waving her hand as if to shoo such an unimportant question away.
"What about the sensitive bit?" I pushed further.
"You are too sensitive. You need to lighten up," stated very matter of fact and turned her attention to her soap opera.
I was not only saddened by the comments made by a teacher that I didn't even remember, but my mother's tone of agreement broke my heart.
I thought, it must be true.
In high school I found the same report card while helping my mom clean out her dresser drawers for donation. The words " show some modesty" and "sensitive" screamed out from the page at me. I hated seeing it again. How did it make it back to her drawer? Why would she keep something that had such hurtful comments about me?I realized a couple years after reading the report card the first time, that my modesty problems were due to the fact that my mom did not like to buy us clothes. All the dresses I owned were far too small and barely covered my bottom to begin with. I had received similar comments about my modesty issues for the next two school years. My mother finally put pants on underneath my dresses, although they were no longer dresses, but had become tops. This is from parents that in those same years built a house in an affluent neighborhood.
And as for being "sensitive", well I still am. It is so difficult for me to let some things roll of my back. I hold onto the words and the hurt far longer than I probably should. I wish on most days that I missed the nuances and innuendos that occur in general conversation. What's funny is that some days I am really sensitive and others I am completely clueless. I just don't know where I will fall on a given day. I'm not showing my butt off anymore. My modesty is in check, as my clothing now fits. But, when it comes to being sensitive, boy, that's a hard one to mend.
Sunday, June 25, 2006
Boo's list :o)
5 things in my refrigerator:
5 things in my closet:
~stuffed animal horsie
~My favorite panda bear
5 dresser drawer
5 things in mommy and daddy's car:
~The Lion King CD
Gabe's list remains confidential or (and most likely) Dora The Explorer is on and he has been mesmerized by her constant questions.
Saturday, June 24, 2006
"What about trying another zoo? " SD comments.
I said, "What other zoo is there?"
"The Toledo zoo." He smiles.
"They have a zoo?" huh..Who knew?
So, off we went today and it was great. It is a beautiful zoo with an amazing area about Africa. We took a train that traveled around the savannah, which had animals such as giraffes, impalas, wild dogs, zebras and various birds (one being a huge ostrich) that were close or in plain sight. It was amazing. The shops looked like huts along with the food areas. Visually it was very cool. The kids road a carousel that instead of horses had African Wildlife. Gabe rode a hornless rhino(not sure why it was hornless) and Boo road the impala. It influenced her so much that she became an impala for the rest of the day. She had a very interesting squeak that she did, convinced that that was truly how they talked.
This was taken in the Arctic Zone. There are two things about Gabe that I want to point out. One is that he is wearing sunglasses! After trying the last two summers, he finally will wear them. In fact he will ask to wear them when it is sunny outside! We are still working on wearing a hat. I have bought so many hats, just hoping, maybe someday.
He also is wearing new shoes that are very different than his last two pairs. The last two pairs were identical, mostly my fault, I didn't want to deal with the struggle of introducing new shoes and I liked the style of them too. But, his feet are getting huge, size 11 1/2, and the style he was used to wearing will not be around forever. I also wanted to go back to velcro, because he is learning how to put his shoes on at school and velcro just makes it easier. The times are changing :o)
I laughed at this picture, because it looks like he's "tickling" the wild boars nose.
"I see elephants...YES!" Gabe was really into seeing the elephants, especially the baby elephant. Boo named the baby Ellie. I often hear Gabe speaking similar to the questions and answers he practices at speech.
"Is it a shoe?" Dr. Karen sometimes asks as she holds up a flashcard of a ball.
"Nooooo." Gabe shakes his head.
"Is it a ball?" She asks.
"Yes!" Gabe says with enthusiasm.
So when he wants something, you can expect it to be followed with a "YES!"
"Watch Barney video....YES!" Gotta love the enthusiasm!
The day ended with a long drive home, Robots the movie and quick naps for everyone, but SD, in the car. With an hour before dinnertime, we got out the slip and slide for some fun in the sun. Then the two snuggled up for Gabe's "I want sleeping" time.
What a great adventure we had today!
And to answer two questions..
-I did write the letter. I felt good about it, because now it is out of my hands and into Gods.
- The other is to Mom-NOS, I look forward to sharing Boo's and Gabe's answers to the questions soon. Great idea.
Thursday, June 22, 2006
When I went to pick Gabe up at school today, I walked into his classroom and noticed a waft of what smelled like paint thinner rush past me.
What is that smell? I said looking around the room for wet paint.
Laura, Gabe's therapist, responded with, "They are tarring the roof of the building."
After ten minutes I started to feel nauseous.
"Maybe you should take him home," she said.
Wow. How did he make it through 2 1/2 hours of this? The therapists in his room looked peaked. Why didn't someone call me I wondered. When I thought some more, I realized that it was the higher powers that hadn't caught on to the intensity of the smell to close the school. The therapists don't make the judgment call about calling home, the director of the program does. She couldn't have called me if she wanted to.
So, I packed Gabe's bag and on our way out passed another mom.
"What's going on with this smell?" I asked.
"They [the higher powers] told the "principle" of our school to "take some Tylenol, it [ the smell] wasn't that bad." she said rolling her eyes.
"What?" "Who should I talk to about this?" "Maybe we should say something or write a letter." I started wondering about tomorrow and the fumes still being in his classroom.
"I guess you would just go down the hall."
Here's the catch all, Gabe's program is a program run under a much larger program that is the main umbrella for diagnosing all different disorders and learning disabilities. So, getting to the right person to talk to could end up being a long chain of command. I saw the majority of that chain today.
On my way out of Gabe's school, I directed Gabe down the hall to the main office.
I met the first person in the chain, the receptionist. Receptionists always seem to not get the credit they deserve. They maybe first in the chain, but really they are the most powerful. They decide whether he/she will make it easy or very difficult to get your questions answered. So, I always approach such power with caution and respect. I explained my situation with Gabe's school and the fumes and I wonder if there was someone I could talk to about reimbursement ( Gabe left school early) and whether or not they will be tarring the roof tomorrow. She didn't seem to know. So I asked if she had a number for someone who may know and I could just leave a message. Sounded good to me and she seemed perfectly OK to provide the information. She reached for a piece of paper, but I noticed something catching her eye off to the side where I couldn't see.
Then the door to the back office opens and there stands a woman who introduces herself, we'll call her Anastasia. We walk to her office, Gabe runs the other direction. I'm hoping when I catch him, at least I will be able to discuss my concerns in her office, which will contain my son.
But, I was surprised to see that she did indeed lead me to her office, where she sat down along with another person ,who was not introduced, and I was left to stand in the opening of her office. So, our meeting was not a "private" matter nor , from what I could tell, an important one. I began to explain that my son attended the program down the hall, that his classroom has a very strong smell similar to Paint thinner. I asked who I would address about reimbursement since I had to remove Gabe from class early, whether or not they would be tarring tomorrow, who would call and let me know and whether it would be at all possible if the roofers would be able to finish on the weekend or after school hours. Respectful and to the point.
This is what I got from the building manager... (mind you she never introduced herself, remained seated at her computer and only acknowledged me when she had a comment to make)
"First of all, " she began,"it does not smell that bad down there. I was just there and it was fine to me. We also have the smell in our offices."
I took a whiff. Nothing. There wasn't any smell here.
"You went to the classrooms today and you thought it smelled the same?" I wanted to clarify.
"The therapists that work with Gabe said it has been pretty strong for at least an hour or so." How could they argue with that?
"It hasn't. Only when they tar the sides of the building." Her attitude was worsening. I'll add that her office is on an inside wall away from any windows.
"Well," I added, "I know my son's therapists really well and I believe them when they tell me that the smell has been fairly strong for the majority of the morning." This woman was grating on my last nerve, but I kept my tone and responses respectful.
During this whole conversation, Anastasia, the women who brought me back to discuss my concerns reminded me of the parrot that sits on the shoulder of the pirate that repeats whatever is said.
"Bwaaaaack! No smell here. Bwaaaack! No smell here."
It was the office manager, Drisella, that had the "patch over her eye".
It went downhill from there, mostly on their part.
I stayed respectful, stuck to the three or four questions I had and wondered where it had gone wrong.
Finally, I stated that I was just concerned about my son, the smell was very strong in his room and I will need to be reimbursed.
I finished my side of the conversation with, "I don't appreciate the tone you are taking with me. I have heard enough." Then I left. What was the point of staying I thought. They obviously were not the people I needed to talk to.
I don't think they heard me, because Drisella kept talking and Anastasia sat perched on her shoulder as her right hand bird.
Gabe then took that as a sign to leave and run out to the waiting room where they had the coolest table with magnets. Upon reaching the table, I told him it was time to go. I then noticed that the room was full of people and it was quiet. Out of the corner of my eye, I noticed that they were all watching Gabe and I and had probably heard the conversation I had just minutes prior. We were in ear shot from the office of which I just left and was now praying to God that Gabe would grant me this one small ,humble wish to leave. His hands didn't move away from the magnets. Then, just out of the blue, he let go and walked out with me and my dignity.
The top person from Gabe's school caught up to me as I passed the door to Gabe's school and wondered if she could talk to me. Come to find out that there have been many "concerns"(complaints) about Drisella. She was wondering if I would be willing to explain what had happened on one of their comment forms that are discussed at their monthly meetings. Also she asked if I would also be willing to write a letter to the head of the entire program that is the umbrella over all the programs including Gabe's school.
Through all this I am left with some more thoughts and questions. the biggest one being WHY ME?????
The next, Why can't people just use common sense and thoughtfulness?
Why were they so defensive?
I know it wasn't all about me, then why did they take it out on me?
I just want to get along. I have been fighting all my life it seems. I just want to stop having to defend myself in order to get was is right and just or even what common sense would dictate as such. Ya know?
Oh, and here is my cool new 'do.
Ok, so I can't . Blogger has not let me post my own pictures for over a week now. The great 'do unveiling will have to wait.....
I figured out that without using a "layout", it works.
Here I am :o)
Wednesday, June 21, 2006
I love these!
It is such a great way to see into our unique and wonderful personalities us MOMS have.....
Thanks to Irish from Sometimes Holland Feels Like Hell for the hit :o)
5 things in my refrigerator:
~Montgomery Inn BBQ sauce
~Dora The Explorer lunch box
5 things in my closet:
~Boo's new curtain rod and rings
~Black knee high boots
~Clothes to wear "out on the town" that I rarely wear
~My jewelry box
~I also have my wedding dress in my closet
5 things in my purse:
~Key chain of beads Boo made for me
~a ball that glows (transition toy for Gabe)
~Nemo fruit snacks
~epi pen jr.
5 things in my car:
~fleece blanket, Boo gets cold easily
~empty diet coke can
~Gabe's Buzz Lightyear sunglasses
5 friends I'm tagging...
Tuesday, June 20, 2006
After the talk, I realized that I will make it through this like everything else. It just freaks me out more because I am not fighting for myself this time, but my beautiful son. It's easy to take risks with yourself, but your children are a whole other ballgame where you hope to never get any strikes or outs, just home runs. The pressure to be perfect is undaunting.
I also picked up a good book which always helps to clear the mind and occupy it with other things. So, I have begun to read and have almost finished
The Glass Castle: A Memoir by Jeannette Walls .
An interesting read about a dysfunctional family and how the children bond together and manage to stay somewhat sane through it all.
I also cut my hair. Yes, I did :o) It's in a cool bob with layers. Very swishy, very flexible, very mod. Fun. I cut it to my shoulders this morning, I am very impulsive at times, and then had a local hair place clean it up. It's amazing what a good cut can do to lift the spirit. Maybe I'll post a picture later, although I prefer to only see pics of my children, because they always look cute, great and fabulous.I'm more hit or miss!
SD and I also got a thriller to watch tonight in our theater that I created for him last birthday. Our getaway from the world. I got the movie SAW from Netflix in the mail today. Horror movies are another great way to clear the mind. I have trouble making it through most of them though.I get too scared. The last one I saw was The Grudge...Wow, that scared the daylights out of me. But, I didn't worry about Gabe's schooling after that. I was too busy listening for bumps in the night.
Thanks to Melissa H., Mamaroo, Gretchen and Mom-NOS and all my other friends through this ring and elsewhere. It is times like yesterday that just a kind word or a hello make a difference.
Monday, June 19, 2006
I'm not sure what to think. There has only been one other time in my life where I felt this alone in a journey. Where family and friends should be rallying by my side, I see no one. Where are they? I just want to throw all those relationships to the wind and watch them flail as they fall to the ground. Because, that is what they have done to me. As some of you may know, I do not have a relationship with my side of the family and SD's side is maintained only for his and my children's sake. They were not very welcoming in the beginning, especially by his brother and father. Not sure why. The first time I met them they had already made up their minds that they were not too thrilled about me. Anyways, that's another story.
So, basically, SD's parents are our only "family" outside of us. My friends from high school and college were not the friends you keep with a family and children. I said my goodbyes to them and that life before I got married. I have been out of teaching for 5 years,those were more of work related friendships. I thought when Boo, my daughter, was born I would move into the "Mom Friendships" and I did. That lasted until Gabe was 1 years old. It was difficult for me to leave the house when he started walking everywhere and sucking on everything. When Gabe was finally diagnosed, I thought I could catch a breath, because we could do therapy until he was "better" and I could return to my life. But, that life is long gone. New friendships have developed and are blooming and growing into wonderful connections and support, most being online, some at Gabe's school. I found that these friendships are all with parents who have children diagnosed with ASD. We spend many conversations focused on IEPs, therapies and the uniqueness of each of our children that I know their children well, but not a thing about them. I spend a lot of time alone. Alone in my thoughts wondering what happened to me? Where is my support? What the hell happened?
We did get the funding for another semester by SD's parents.
My hooray is so small, because my husband was grilled concerning our choices about Gabe's education. The same conversation that he always has with them. I hate asking for help, especially with money. (Just a quick reminder that they asked if we needed help financially. I should've realized there would be a double edged sword. ) Parts of the conversation focus on our "unwillingness" to let go of the ABA therapy, because of our fears, that we didn't really think things through and how they thought we may have created the situation at the IEP by having a consultant, which at the meeting must have caused the "unpleasant atmosphere". On and on it went until SD just couldn't think of the right answers anymore and they walked all over him. They made us wait three days to see if they could cover another semester at Gabe's school.
They would "Let us know.."
This is from people that buy $600.00 sweaters.
Now, I know some of you are thinking,
"Well, that's a lot of money for anyone." (Poor grandparents. Bleh)
My response, "Not if it's your grandchild. Not if he is one of the only two you will ever have guaranteed." "Not if you go on lavish trips every other month."
If trips, material things and status rule your world over family, then you have missed what life is all about.
I feel like my lips are tender and my pride of being a good mother has been stepped all over and discarded with the trash. Only then to have my one true support, my husband, start to waiver and blow back and forth with the wind after hearing my father in laws comments.
I'm exhausted. And I'm alone.
I spend endless hours researching, talking with parents, consulting professionals only to be treated by IEP teams and in-laws as if I had been sitting on the couch watching "The View" through everything. I matter dammit! What I do matters. Who I am matters. My son matters.
Maybe this is yet another lesson that Gabe has taught me.
Thursday, June 15, 2006
That's what I was saying on the INSIDE.
On the OUTSIDE, I said "Isn't that illegal?"
That's where the IEP got really interesting today.
It started off strange to begin with.
Here are some of the highlights-
*They STILL will not certify him AI, even though I now have three people/teams that diagnosed him AI. I was assured a year ago that they were going to change it after I gave them the paper work. I should've gotten it in writing.
* Doughnuts do not make for an ice breaker at an IEP, but instead, compound the tension, especially when you notice that the only person eating the doughnut holes you brought is your nervous husband.
*They were shocked when I expected more than 9 lame generic goals for the classroom. Out of my 23, I got 9. (Not including OT, PT and Speech) Most of my goals they assured me they do in class anyway. I said, "If you do them anyway, then why is it a problem to make it a goal?"
*They would reevaluate Gabe in the Fall for certification (Whatever). When I asked if anyone on the team doing the evaluating,was AI certified, they replied with"No." I could'nt believe the confused looks I was getting across the table.
My response, "Shouldn't you have someone knowledgeable about Autism if you are testing to see if a child is Autistic?" I had to control my sarcasm.
I got them to add an AI consultant and the AI team would be doing the evaluation.
* The teacher was in tears about my 9 goals. "What about the other children in the class? I can't be just with Gabe!" "This is too much."
I thought I liked her, but now I was getting pissed. I said that I didn't want to affect the flow of her classroom. I liked how every child was attended too. However, Gabe has very different needs than some of those students that need to be addressed in order for him to get an appropriate education.
Here are two of his goals. You tell me if they are over the top......
1. Gabe will participate in circle time independently.(He can do that now 85%)
2. Gabe will follow 2 step directions given by a variety of staff. (He already does this, but we are using a variety of staff to generalize the skill)
She doesn't even have to provide data!!!!!!!!! We never even got to the daily communication Log!!!!!!!!!!!!!!! Where is the hardship here!!!!!!!!!
*Eventhough the tension was thick, the tone was still pleasant. Tears in her eyes, we start writing speech goals with a speech teacher that is not even going to be Gabe's speech teacher next year. I don't think she even does elemenatry students by some of the comments she made. I managed to get 6 goals written exactly how I wanted them. Which is funny, because not a half hour before that they refused to add speech goals.Another long story, perhaps another day.
* Next topic......one on one aide....."Well, we are going to request a one on one aide for Gabe, so that should make the goals more attainable and free you up to help the other children in your class."
All of a sudden they throw the papers in a folder, slam it shut and pronounce with smiles on their faces..."Well then, we will have to adjourn this meeting until the fall." "When would you like to set up a date?"
Ahhhhh...What? We were an hour and a half into the IEP and my representative from GAbe's school, who was completely awesome, had already cost about $200.
They go on to say, "We can not hire a paraprofessional, so we will have to adjourn this meeting."
After what seemed like 15 minutes of them saying over and over with smirks how they are not qualified to hire paraprofessionals, "I say, I know YOU can't hire a paraprofessional. Who do I need to talk to who can?"
I so wanted to throw them aside and get to someone who could cut off the gristle, get down past the meat and gnaw on the bone with me.
"Oh that would be the Special Education Director, BUT he's sooooooooooooo busy. We would've had to make this appointment months ago. There's no way he will be able to see you." rolling eyes, crossed arms.
"So, what happens in the fall? What happens to Gabe?"
Matter of fact they state, "He will not be able to attend school until he has an IEP."
"What?" Thank God I had been a teacher for 6 years and recognize bullying by the school.
"How on earth can you not provide a public education to my son?" Isn't that illegal?" I know I have them there. I was infuriated. I have been through far worse than this with my insurance company. I was not going to be pushed around by two people that obviously were missing the true calling to teach. It also saddened me that bottom line, they don't care about Gabe. They only see him as a piece of paper with a label, an inaccurate label, but just a label.
"That's illegal. How on earth can you deny a public education to my son?" "I think we may have to seek counsel." They want to play hardball, I have been practicing my swing for almost two weeks now. I was feeling really confident.
Ten minutes later, the very busy Director of Special Education was in our conference room and we have a temporary aide until the school evaluation is conducted within the first 30 days of school.
My ass adjourn the meeting
What I learned about IEP meetings....
1. You are your child's only advocate.
2. Read, read, read EVERYTHING you can about IEPs before you go. Read an actual IEP before you write one. Get copies of other people's IEPs. Educate yourself. If you sound educated, they know that you are someone to reckon with and they will think twice about using catch phrases such as "We don't have the resources for that." or my favorite "Wouldn't every child benefit from an aide?" or even better "Sometimes they get rediagnosed when their autistic tendencies go away."
What ? Tendencies?
I said "You don't have tendencies when you are Autistic. Either you are or you are not. It's not something you grow out of."
3. If you want it, ask for it, push for it, have data, a reputable organization to back up why your child needs a service.
Example from today, Gabe has Verbal Apraxia. Now, the misconception about Verbal Apraxia is that it has to do with the muscles and motor control in the face. BUT it does not. It is a nervous system disorder that affects the ability to sequence and say sounds, syllables and words. Basically, they understand what is being said to them, but the brain has a hard time working with the mouth getting the words out. The muscles work fine, it is the signal that is being sent that is the issue. Verbal Apraxia is a life long disoder.The school speech therapist, which I found many like to do this, just wanted to use an instrument that would vibrate his face. Are you kidding me??? Maybe if he had sensory issues...
So I cited the American-Speech-Language-Hearing Association and their definition that I mentioned above. The vibrator idea was dropped and I got the speech goals I wanted.
*Bring water to drink. I don't know about you, but my mouth dries up like a desert when I feel like I am on the front lines. I had a pop, but with all the doughnuts SD ate, he drank my pop too.
* Last, but not least, (I could go on forever, because IEPs suck and there is so much to learn) be respectful. You may not like the people across the table from you, you may even have short mini episodes run through your mind of stuffing a doughnut holes in their mouth so that they would just stop saying such hurtful and stupid things while they are talking AT you, but they will be with your child. It is hard to separate parent from child when there has been harsh words between teacher and parent. Bite your lip instead of letting your mouth run free.
Take care and go gentle into the IEP.
Monday, June 12, 2006
At about two and a half, I noticed Gabe laughing at the same time that
Little Bear did. In fact, after watching Gabe watch this video a few more times, I realized that even though he had limited speech, he was "scripting" the entire video. Maybe a little jump over a log like Little Bear, running when Duck did. I look back now and realize that Gabe has always laughed when the kids do on the Nick Jr. videos during the intro and closure to their movies. He not only laughed when they did, but squealed. I felt my stomach tighten and I quickly turned off the TV. My plan, no more TV. How could this happen I thought? Wasn't he beyond the cut off for "scripting"? What is going to happen to his language now?
His "scripting" continued, but became less obvious. I don't know if I just became accustomed to it or he began to really watch what was happening in his videos than just what they were saying. I also was rotating the movies much more often, hoping that he would not see any one of them often enough to be able to script it.
Six months later, Gabe is still "scripting", but I realize now that it is serving a wonderful purpose. A purpose that I wondered would ever come to light or would he just repeat phrases without a means of communicating that I was familiar with. Lately his love of Dora The Explorer has pushed Gabe's scripting to expand into normal conversation. Dora asks Gabe where things are "Where's Swiper?" He yells back, pointing to the bush, "The bush!" Dora is constantly, constantly, asking questions, involving him, persuading him to communicate. She does not accept just an imitation of her actions, she wants you to live them. There aren't any wall flowers when Dora is on. She commands your attention.
I believe Dora has helped Gabe's sentences to expand to three words- "I want Juice", "Look! There! Bear!" "Oh oh! Red car!", "This way zoo!". They have expanded from the first phrases we cherished such as Ready, Set, Go, to ideas and word choices that he put together to express his ideas. Amazing. My favorites, when he points down the road from his school and says "This way zoo!" and when he snuggles in close, under the covers with me and says "want sleeping mommy".
He still loves to script in the car on long car rides, but now I look at it very differently. Scripting is a means to understand language for Gabe and it's complexities, its uses. Now I see it as a celebration of language. My son is talking! He maybe using phrases that have been created by others, but he chose them and hearing his voice is music to my ears. Who doesn't like hearing the direction of "Get a leaf from the chocolate tree!" ????
I say...Bring it on Dora!!!!
Friday, June 09, 2006
I just don't know what to do next. The line from The Fray song, "Everyone knows I'm in over my head", keeps singing through my head. Just that one line, over and over. I am. I am way over my head. I'm drowning. I just want someone who knows Gabe to say, "This is what he needs, use these goals, here's the legal jargon to get it. Voila." If only Viola was that easy. I just want to get my son what he needs. I can't seem to get it together. I have all this great information and I am clueless on what to do to get that same great information into the heads of the people signing his IEP on Thursday. I keep on going, reading the Wright's Law Page, googling IEP, ABA Goals and Preschool curriculum. Then, I also got Dairy Cream today, after I ate 2 pieces of French toast with lite syrup for dinner. I don't think the lite syrup made a difference and now I am stuffed and sick. yuck.
Here are our ideas about Gabe's education for this Fall...
1. ECDD with aide in the morning 4x weekly/2 hours private ABA therapy in the afternoon
2. Mainstream with Aide in morning Preschool 2-3x week/ 2 hours ABA therapy in afternoon
3. ECDD with Aide in the morning 4x weekly/ Mainstreaming Preschool with aide 2-3x week
4. ECDD with Aide in morning 4x week or Preschool with aide 2-3x week/ AI school in afternoon (not sure available) how often?
5. ABA School morning/ Preschool with aide in afternoon 2-3 x week
6. ABA School morning/ ECDD with aide in afternoon 4x week
-Will he be potty trained for regular preschool by Fall?
-Finding another $8,000 for ABA school semester?
-Did they actually close the public elementary AI program in the city near us?
-Will the ECDD classroom be challenging enough? After meeting today I'm not sure, especially after looking at his ABLLS Scores.
-If we leave the ABA school, will the public school system provide enough to prevent regression or remediation of skills? Can they continue the same success rate for Gabe?
- Will I be able to find dependable and available ABA therapists to come to our house 1 hour each day (I will be doing one hour also)? I know some great therapists, but they are really busy people.
It's officially the weekend and I hope the kids are good to SD and I and let us sleep in tomorrow. We need it.
Tuesday, June 06, 2006
So, it is officially my turn. I have so not been looking forward to this day. You could compare my attitude to the kid that slouches down in the back of the class, almost falling on the floor, just not to be seen. That's me.
It's that time of year .....IEP time.
I -Incredibly Confusing
E- Everything you never hoped for
P- Preparing your child's future with someone you don't know
I want so badly to believe that everything will go smoothly. I do. The first IEP for Gabe, I really put the cards in their hands and trusted them (the school) with making the goals for him. They only saw Gabe for what he was during the half hour evaluation they performed, therefore, set his goals really low. So low that, later I wondered if anyone there had any intention of cheering him on, or had they given up before even trying? Gabe's new teacher for the fall seems very caring and knowledgeable. It's the unseen parameters that are placed on special education students that bother me. How low will they put Gabe this time just to ensure success at 60%?
This is what I have set so far for his IEP next week, a representative from Gabe's school will accompany me in the meeting and be able to explain the goals that should be set for him in the fall based on his ABLLS scores. I made another meeting with the head of Gabe's program to go over other parent's examples of IEP's, to explain to me where his scores fall on the ABLLS and what goals should be in his IEP. Sounds good right? I should feel confident? I don't. It took me a couple days to figure out why.
I believe Gabe will be very successful in the ECDD (Early Childhood Developmentally Delayed) classroom. He is an awesome kid that loves other kids and wants to have fun and learn. Sounds like a candidate for preschool to me. So, where's the problem? What worries me is that Gabe still has behavior problems. First, I have to say I hate that term "Behavior Problems". BLECH! Let's see.... How about "differs in opinion on what he should be doing at times" or (why not an acronym?) hmmm....DIOOWHSBDAT. Pronounced "Deeoo-was-ba-dat". Autism has so many acronym's, I just thought why not another?
Anyway, I'm getting away with myself, his "opinion" can be construed as defiant or blatant disregard of authority, which it kind've is, but really isn't. I feel I'm talking in code, so here is an example,
AT SCHOOL TODAY
-We arrive at school 2 minutes before circle time. (Traffic was terrible)
Gabe is used to getting at least 5 minutes of play in the gym before school starts. He also loves playing with the new ball toy they have in there. (Which we have at home and remains unplayed with most of the time)
So, after reaching the ball toy today, I quickly notice that it is circle time.
I tell Gabe and start to guide him out of the room where circle time is.
He gives a little muffled scream and falls to the floor. I try to guide him to his feet, but he remains limp. I had to carry him to circle time (screaming) where he refused to sit in a chair and slid to the floor.
Gabe was immediately put in an Educube until he could calm down.
After a few minutes he was done and happily doing the motions to Zoophonics.
Now, someone not familiar with Gabe would assume that he is just being defiant. Some may even scold, put him in time out or completely remove him from circle and any other fun activities as a punishment. Which is what I am afraid of when it comes to any school that doesn't have the same knowledge about Autism and Gabe that his current one has. Is Gabe so special that it will be impossible for anyone else to understand his needs? No. I just worry. I worry about those who may label me as the mom who makes excuses for his behavior and then control his behavior their way.
Is it Autism that causes Gabe's "strong opinions"? Some believe it is. I don't know. All I know is that Gabe has them. Sometimes, once a day for an entire week. Then maybe not for 3 weeks, all depends. On what? Not sure. They happen and I just want them to love him through it like I do. No judgment, no furrowed brow, just patience. Make sure he is safe, don't engage and let him calm himself down. It's just that simple. It really is. Ride the storm. The trip is worth the smile at the end.
I have a name for a behavioral consultant for our county that works with the schools. She is said to be helpful in aiding the teachers in understanding techniques and strategies with certain behaviors. I hope she can help ease my worries.
So, I am calling out to all bloggers who have some wisdom they would like to share about IEPS. This is my time of great need. Thanks :o)
Monday, June 05, 2006
Gabe's allergy symptoms manifest themselves primarily through his bowel movements. We are uncertain if it causes anything else like stomach discomfort. When I ask him if his tummy hurts, he always says "No." But says "Yes" to his bottom hurting. Our first sign of an allergic reaction is diarrhea that creates a burn like rash on his bottom and genitals. (OUCH! is an understatement) It is so uncomfortable and painful that Gabe sometimes has started crying the minute he began to have a bowel movement. We quickly wipe the area clean, lather with Vaseline,administer Benadryl with lots of hugs and kisses.
We have to buy most of Gabe's food in it's purest form. Garlic is in spaghetti sauces, Gravy, sauces, prepackaged dinners, Rice dinners, Salsas, a lot of meats like Smoked Turkey bacon (Jenni O)(We think it is in the smoke flavoring) and Turkey sausage (Jenni O) in it's ingredient labeled "Spice derivatives" (SD and I were like, "What the hell does that mean?"). Soy is another whopper. It is in everything. I'm wondering if over consumption of something, like soy, in our society is attributing to allergies. I'm certainly not a scientist, but what is soy doing in kids' cereals? Also, ingredient labels, companies should only pick one oil that they use with their products. Either, or, and possible are not words that should be allowed. Either it is or it is not. Coppice.
Poor Gabe and his butt. We've had two episodes already this week. He has been an incredible trooper through it all. I would only be accepting ice cream at this point if I were him. But, I have made him spaghetti tonight from scratch. Well, I didn't make the noodles, they're gluten free, and the sauce is really tomato paste (The jury is out on whether he is allergic to tomatoes) mixed with starchy noodle water. I'm not the best cook, but then Gabe's menu doesn't really demand much on the culinary side. Thank God. I'm trying though.
Friday, June 02, 2006
Can you see me? Look up. Further. Put your head all the way back.
Ya know, I like it up here. But, sadly,I don't think I can stay long. I have 'lots of things to do and life must go on. I made reservations to come again. They can't guarantee a spot, but they assured me that I am always welcomed back. I put in a good word for you too. Maybe we could meet here? I know you'll love it.
That's how I felt at Gabe's appointment today. We have finally completed the list of specialists that I created when he was first diagnosed and seemed to continue to grow as the months went on. But, I did it. Done, done and done. The Pediatric Neurologist was the last one. I waited for 4 months to see the top, head honcho. I filled out the 5 page questionnaire and prepared myself for the long wait that always happens in the waiting room and then in the "closet" the nurse puts you in. I must say, minus the heavy (cough, cough) cologne, he was quite engaging. The doctor was friendly, took avid notes on his lap top and seemed genuinely interested. (I caught myself looking around to see if I was actually in a doctors office) He did have a lot of specific signs around the room like, Don't touch the scale, diapers are to be changed in the hall bathroom, etc. They were all done on very bright paper, bold font and all over the walls. I felt like I had to review the signs around the room before I chose to do anything but sit. Gabe clearly tested the necessity of each request.
Now, I must explain that Gabe had already been diagnosed through a well known doctor at a prestigious university that started the Play Project (Known as Floortime), a Developmental Pediatrician, Pyschologist, and Behavior Specialist ( A team from a leading hospital). I'm mentioning all that, because when I say that I had no idea why we were consulting a Neurologist it would make some sense, everyone else seemed to have covered everything. I read online what they test for and reasons to see one, but Gabe only met one reason, he has PDD-NOS. For now, that's it. No meds, no seizures, no motor issues (knock on wood). So, when the doctor asked me why I was there, all I could say was, "Isn't Autism a Neurological Disorder? " It just made sense to consult with you too. He nodded in agreement.
After an hour of playing, talking and bringing out the medical equipment,
I left with this....
Gabe has PDD-NOS.
He will be fine. He will probably marry (If he wants to) His language will eventually catch up and he will be able to enjoy life just the way he is.
Then he said a short disclaimer...something to the effect of " I can't guarantee it, but he looks that way to me."
That's when I floated up. Up and up and away.
Thursday, June 01, 2006
The words Gabe uses are becoming clearer, so we are beginning to understand more of what he is saying. In fact, we are realizing that he is quite the singer. He also is quite the critic. He has made it loud and clear that everyone except him are not to sing.
Screaming......"No singing!" he shouted when I tried to do a duet with him to Twinkle, Twinkle, Little Star.
We currently are respecting his wishes, except when his sister wants to sing. He seems OK with that arrangement.
All day long he has been singing Charlie Brown by the Coasters. He puts a lot of emphasis on the beginning...Fe-fe, fi-fi, fo-fo, fum. He sang it over breakfast, at school, on the way to speech and loudly at the train table in the children's section at the library, then at dinner. SD said he couldn't get it out of his head. It is a catchy tune.
So, this morning, after the beautiful singing at breakfast, I thought he might want to hear the original as we drove to school. My thinking is that he could pick up more of the lyrics and sing longer. Both of my children love to sing and I look forward to being their audience.
When asking Gabe if he wanted me to put that song on he responded quickly with a "No!"
"Really?" "Are you sure?" I pushed play and the song came on.
He didn't say no, but didn't seem too excited about it either. I was so surprised that he didn't want to hear it. He sang it all morning.I turned it off soon after. Maybe he doesn't like how they are singing it either. Huh. He also seems to be "growing" out of CD's fairly quickly. They have a time span of about two weeks than they are obsolete. I have been checking out different children's CDs at the library every week or so to feed his need for music. I enjoy the change, because there was a time not too long ago that he wanted only certain CD's. You can only hear the theme song to Dora The Explorer so many times, although that is a finger snapping, good tune.
So, I am curious about what the next favorite will be. What is really interesting is that we haven't played that tune in about a month. A month ago he showed no interest and never even whispered a lyric to that song. Out of the blue, he started singing
Fe-fe, fi-fi, fo-fo, fum- (Bee-Bee, Bi, Bi, Bo,Bo, Bum)
I smell smoke in the auditorium ( I newl oo ?????)
Charlie Brown, Charlie Brown (awee own, awee own)
He's a clown, that Charlie Brown (awee own, awee own)
He's gonna get caught (??/???????)
Just you wait and see (Bee Bee, Bi, Bi, Bo, Bo, Bum )
(Why's everybody always pickin' on me) (???????)
What else does he know? What other things will he show us?
I can't wait...... but I will have to.