Library Treasure

This has not been a pleasant week. The Baby is coughing again. She is being seen on an emergent basis today at the local children's hospital by ENT. I am truly running on empty. Or more accurately, running on organic coffee.

Life goes on, however, and the good walks hand in hand with the bad. The Boy is the star of his class. Over our Tom Sawyer summer he has matured and the teacher has observed a huge change. He is her "rock" in the classroom.

The teenager has been seizure free for about 3 weeks.

We have been sewage free for 7 days.

There is a change in the air. I keep asking everyone, "do you notice it?" I get the same answer. No. This morning the warm breeze wasn't as warm and a faint hint of Fall is in the air. Or at least what we call Fall in the tropics. I remember an incredulous teen in the neighborhood astonished that I could "smell rain" hours before it actually fell. I realize, of course, growing up legally blind has left me with a bionic nose.

Yesterday I made it to the local library to look up gluten free diet books which The Baby has begun. We are a family who frequents libraries but life has been so hectic lately I don't think we've been all summer. Walking in to our small community library I had forgotten how much I missed the place. It was reminiscent of that Fall breeze. Subtle excitement and anticipation of good things to come. Unfortunately, a majority of our society doesn't sense the same "fall breeze" in their local libraries.

I found two gluten free cookbooks and grabbed The Great Gatsby. I figured it was time I read The Great Gatsby as I only have about another 30 more years left on this earth figuring in family genetics. And then i found an unexpected treasure: Born To Be Hurt The Untold Story Of Imitation Of Life. The Genius and The Artist know that my favorite movie of all time is the 1959 version of Imitation of Life. As a child it had a profound affect on me. As an adult it still does.

So I head off to the hospital today with The Great Gatsby under one arm my "untold story", under the other arm,The Baby on my hip and The Teenager at my side. It doesn't get much better than this.

Ice Cream

"Ice cream is exquisite. What a pity it isn't illegal." Voltaire

Wonder Woman Strikes Agian

This post is for those of you who have or work with special needs children. All others will not understand. Since this is school season I will be using lots of visual aids.

As previously stated in The "S" Word Chronicles Wonder Woman got wind of the school bus situation:

Do I smell an IEP violation?.

This was on Wednesday. Because I was at work I could not follow up on the bus situation immediately. I didn't have to as Wonder Woman phoned me first. She informed me that she had instructed the school to amend the IEP which would be done today. (meaning Wednesday) and the handicapped school bus will be ordered. She gave me her cell phone number in case I had any problems. I thanked her. While I am thanking her I am thinking:

On Wednesday afternoon I pick The baby up from school. The teacher approached me stating that she will be amending the IEP today. Here's our conversation:
Me: You will be amending the IEP today?
Teacher: Yes.
Me: You will be amending the IEP today?
Teacher: Yes
Me: You will be amending the IEP today?
Teacher: Yes.
Me: What about the staffing?
Teacher: What staffing?
Me: The staffing needed to amend the IEP. You know the one that has always been necessary and always takes weeks to schedule because it takes weeks to get everyone who needs to be at the staffing gathered together in one place at one time? The staffing that is never done at a parents convenience?
Crickets chirping
Me: Ok. Listen. If you can amend the IEP today I am going on record today as telling you that I will admire you even more than i admire you already.
Teacher. Thank you. (she is smiling and backing away.)

On Thursday afternoon I picked up the baby. The teacher sees me and signals me:

She presents me with the amended IEP for my signature.

Me: You amended the IEP!
Teacher: Yes.
Someone pinch me.

On my way out the aid mentions to me that the PE coach has worked up an adaptive program for The Baby and today they worked with bean bags.

Me: You worked with bean bags? You were there at PE?
Aid: Yes. I attend PE with her.
Me: WHAT? You attend PE with The Baby?
Aid: Yes.
Me: You attend PE with The Baby?
Aid: Yes
Me: You attend PE with The Baby?
Aid: Yes. I am her aid.

On the way out of the classroom the baby points to a poster. "What's that?" I hardly notice as I am in a state of shock. I feel like I have just been injected with a big IV bolus of Versed. The teacher hears The Baby. "What's that, Baby? Tomorrow when you come to school we will discuss this poster and I will tell you all about it."

I know I am not in Heaven because i would not be ankle deep in sewage if I were in Heaven. I do know this. however. The teacher, the aid and Wonder Woman are members of an all female Amazonian tribe, one of which is pictured below, whose powers include super strength, super speed, stamina, and the ability to fly.

Do I smell an IEP violation?

Re: Can This Week Get Any Worse?

Yes, it can.

After dropping The Boy and The Baby off at school I got a distress call from Iris wanting to know if I was on my way home. I thought at first because The Baby's classroom was locked and the teacher was running very late that Iris was worried she wouldn't make it to her job on time. Boy, was I wrong.

"The toilet just exploded and the living room, dining room, hallway, kitchen and bedrooms are flooded."

It seems when they were blowing thousands of pounds of pressure through the pipes in the neighborhood there was a stoppage near my pipes so the thousands of pounds of pressure found an easier outlet. My toilet.

I believe sewer guys hard hat among the debris on my dining room table says it all.

The "S" Word Chronicles

Warning: fasten your school bus harness. It's going to be a long, bumpy blog ride.

School:
In ABC county, Florida The Student Assignment Plan dated December 18, 2007 and amended January 13, 2009 states the following:

"Starting with the 2009-10 school year, elementary students enrolled in ABC County schools will be assigned to their zoned school."

School Choice (our previous counties "plan") has been replaced by a zoned school policy. This includes the exceptional student population. Schools that used to be well-versed and equipped to deal with the physically impaired / exceptional student populations no longer exist. Previously, because we had schools who dealt with this exceptional student/physically impaired student population parents generally chose these facilities over their zoned schools. Consequently many of our zoned schools managed to escape this segment of the special education population. Occasionally, if a special ed kid wandered into their zoned school as The Teenager did 12 years ago the race by school staff to transfer that student to a more appropriate "physically impaired" school was on. The transfer was accomplished quickly. With the new zoned school plan those days are over.

I will admit I believe in the "inclusion" and "least restrictive environment" theories that push to put all kids in their zoned schools. Unfortunately, theories don't work when you don't have adequate funding, staffing, appropriate equipment and support personal to implement them. The classroom can become a dangerous environment for a fragile child very quickly.

So...when I picked up The Baby yesterday I made a phone call to the Administrative office regarding my zoned school which is obviously one of those schools who has limited experience with the physically impaired population and asked what they were gong to do about adhering to The Baby's IEP which the teacher still had not seen. There was no adaptive equipment. No adaptive PE. She had only had about one ounce of the special formula I sent and was covered in food as she had no assistance with feeding. The aides were pulled from the classrooms on the first day of school leaving The Baby's teacher with 7 general education students and 7 special education students and no help. Another teacher was explaining to a group of us parents that they had a roofing crisis and a mold problem and the aides were pulled...I never got the entire story because at this point all i could hear was the ringing in my ears as my blood pressure was shooting to stroke level. Still, I'll admit aide-pulling wasn't a total shock. Those of us who have been around the exceptional student education block numerous times already know that just because they are legally obligated to have an aide in the classroom doesn't mean said aide isn't pulled out for lunchroom duty, bus duty, mold duty or whatever "duty" pings around in the minds of those "higher powers."

Yesterday, within 5 minutes of leaving my message with administration a lovely lady I will refer to as Wonder Woman phoned me back. By 9:30 am today Wonder Woman had already been to The Baby's school delivering an adaptive chair, met with the teacher, the physical therapist and the PE coach, obtained authorization from her supervisor to purchase any and all equipment The Baby needed and told me she was delivering a Touch Talker in the morning to help facilitate the baby's ability to participate verbally. Wonder Woman bubbled on about my adorable child who was "so cute" (uh-oh) "and so eager to participate and alert and aware of her surroundings and she high fived me and was working with puzzles and..." When you run into someone this bubbly it's easy to tell if the bubbles are caused by genuine effervescent enthusiasm or by an accumulation of hot air gas. Wonder Woman was bubbly in the best possible way. I was speechless.

School Bus:
It did not show up on the first day.

On the second day it showed up well after school had already started. I had already taken the baby to school and gone on to work. The bus barely paused at our front door doing what law enforcement officers refer to as a "rolling stop" but Iris/Virus was waiting in the bushes with my list of questions and forced them to a complete stop.
Do you have the car seat on this bus? (I have had 2 foster children who have had buses show up with no car seat or harness even though it was listed on the IEP.)
Yes!
Do you have the paper work so mom can designate who is permitted to take her off the bus, pertinent medical information and emergency contact?
No.
Do you know The Baby cannot walk?
WHAT?
Keep in mind I specifically asked this question at the IEP meeting and specifically was told that they "would have to pick her up." When the wheel chair arrived they would amend the IEP and order her a handicapped bus. Apparently the bus drivers and the IEP team aren't on the same page as the bus driver refused to pick her up stating they could not lift or carry her up and down the bus stairs.
Before I even had an opportunity between my work clients to tackle this latest glitch in "inclusion," however, Wonder Woman had already gotten wind of the bus issue and began the process to correct it. In the meantime I will be responsible for transporting The Baby to and from school. This is after I transport the Boy to the other end of ya-hootyville (as my mother would say) to his school. All this and working, too. What fun.
Some of you reading this may think I have, "bad luck" or am "overeacting." Some of my OI buddy moms reading this have already fainted.

True example: This week on the first day of school my friend Pam's teenage daughter put her wheelchair bound non-verbal brother on the school bus which came to their house. Bye Bye James! Have a good day at school! The problem, you ask? It was the wrong bus. They took James to a school in the opposite end of the county. Pam received a phone call later in the morning. I assume she had some kind of identification on James for them to finally figure this out.
And you want to know why I won't put The Baby on the bus until they have the appropriate paper work?

Sibling:
For the first time in the boys lifetime time I am not worried sick about his school placement. He is returning to the school he attended last year which is a gift from God. I did have a moment of panic when my phone rang, though and it was his teacher. Did The Boy tell you how the first day went today? Yes. And this is what he said:
1.) Caleb (not his real name) had a "major meltdown in the morning but got his act together and was fine the rest of the day."
2.) "There are 3 kids in the class with bad behavior problems."
3.) "Mrs. Teacher had trouble getting Master X's shoes on because he wasn't cooperating so we told her to try sitting on his head."
4.) "I was the best behaved kid in the class."
This was all confirmed to be true by Mrs. Teacher.

Squirrel:
For those of you who have inquired about Frank sadly he did not make it. Around the 4th day he seemed a little less lively and when I went to give him his midnight feeding he had already drifted off to squirrel heaven. Frank was a good squirrel and although I hate pink looking rat-like creatures I do miss little Frank. The Boy was sad. The Teenager, who couldn't stop gagging every time she looked at Frank, was relieved.

Sewage From The Bowels Of Hell:
When I came home from work today I noticed the truck 3 doors down....they're back.

Could this week get ANY worse?

A man interrupted my thoughts by yelling across 3 lawns, "when you go in your house can you flush your toilet 2 or 3 times?" I agreed to accommodate him but soon realized I was locked out. By the time I drove to Iris/Virus's second job, picked up the spare key, picked up The Teenager, picked up The Boy and got home sewer man was gone. I learned from my neighbor sewer man's real name was DAMIEN. A bad omen. And as predicted when I put a load of laundry in the washer demonic gurgling started coming out of the bathtub drain. The tub was filling up with sewage. The toilet was starting to overflow.

I locked the bathroom door from the inside and shut it informing the boy there would be no bath tonight as I broke out the bottled water to brush our teeth in the kitchen sink. Our tap water doesn't smell right and I have no intention of contracting Hepatitis A. The boy tells me he doesn't take a bath every night anyway. I correct him. You take a bath EVERY night. Well, not really he replies. "But I do get wet every night." Groan.

Sand:
I am exhausted beyond belief. The Boy fell asleep immediately after his first day of school. His first nap in seven years. The Baby fell asleep sitting up in her high chair during her nebulizer treatment. Today one of my clients asked if I would attend her child's first IEP as an advocate. Oh God.

I think it's time for some family beach therapy this weekend. We need to sit, inhale the salt air, absorb the suns rays and relax. All the while praying, of course, that The Boy doesn't break his femur in the waves again.

Here You Come Again

All I can think of as I leave The Baby's new school for "meet and greet day" is that Dolly Parton song. It keeps pinging round and round in my empty head as I'm maneuvering the baby's stroller through the swamp I had to park in. I had to park in the swamp even though I was 30 minutes early (Hooray for the great parent turnout! I was impressed.) because the new school has one handicap parking place and a car is parked in it with no handicap sticker. Oh wait a minute...what else is that pinging around in my head? I think it's called Deja Vu.

"Here you come again. Just when I'm about to make it work without you."

At the boys former school I nicely informed the principal that the four handicap parking spaces they had were filled with four cars none of which had handicapped tags. Day. After. Day. After. Day. After. Day. My son is in a wheel chair and we shouldn't have to park 1 block away. I informed her of this issue three times. She assured me she'd look into it. She didn't. Another parent, however, was not as nice as I was and screamed, threatened and called the police on a daily basis. And she waited...yes waited... for the people who parked in the spaces to confront them. DAWG! I mean you really have to admire this woman's tenacity and fearlessness! One of the people she confronted was a school employee who made the mistake of stating, "At least you know I work here." OMG. That was a b-i-g mistake. Honey, I ran.

I grew to love this parent and mourned her loss when the family moved back to Tennessee. Although, I do admit I didn't really want to be associated with her when she was confronting the parking perps yelling and pointing my way, "And her son is in a "f%&*#ing wheel chair you b&%!h."

So i get to today's Meet n' Greet soggy having parked in yoo hoo land. But I'm early. I meet the teacher who is a lovely woman and the class aide. I like them immediately. Have you had time to review her IEP I ask the teacher? IEP? No, I haven't even received a list of my assigned students yet from the office. School starts tomorrow. Help me, Jesus. The song starts playing in my head...

"Here you come again. Just when I'm about to make it work without you."

It's the law: In the United states public schools are required to develop an IEP (Individual Education Plan) for EVERY student with a disability who meets the federal and state requirements for special education to provide the child with a free appropriate public education (fape.)

Interpretation: This doesn't mean they ever look at the IEP again once it's developed. (fake)

Looking around the cute classroom I ask where is my daughters adaptive seating? She has cerebral palsy and is paralyzed on one side. It is clearly stated on the IEP that she will have "adaptive seating" in the classroom. The teacher thinks for a moment and then shows me what she could do for adaptive seating to insure The Baby's safety. Not bad for a spur of the moment adaptive seating idea. I like this woman's pa-zazzzzzzz.

How will you get her off the school bus and in to the classroom I ask? Although we have had our wheelchair evaluation the wheel chair is not ready yet. Even when she gets her new wheel chair the only way we will get a school bus to accommodate said wheel chair is to have another IEP meeting to amend the current IEP to reflect "handicapped bus services." Yes, I am not lyng to you people.To schedule an IEP meeting may take weeks. To find a wheel chair bus? 5 to 15 days. (More like 15 in my past experiences.) So. Back to ....She cannot walk and she is heavy. The IEP says you will have a wagon or something for transport because she isn't required to have a wheel chair? She doesn't look heavy the aide replies. I remind her she will have The Baby, The Baby's back pack and won't you have other pre-k students as well to shuffle from bus to classroom? That "dawning of terror" look that I've become so familiar with after 3 adopted special needs children and many, many special needs foster children starts to cloud the aides face. Their wagon isn't an option as it doesn't have sides and the Baby will keel over and fall right out on the cement because of her paralysis. I offer to leave them my adaptive stroller. The teacher informs me when a parent leaves equipment in a classroom it is automatically deemed "equipment for everyone" thus "releasing them from all liability if it is damaged. " I point to the adaptive stroller. "That cost $1,200.00." I say. The look on the teachers face informs me that the adaptive stroller is no longer an option. Around this time the teacher and the aide look at each other simultaneously and mouth those beloved words, "What about PE?" Ah, music to my ears. It's beginning to dawn on them. They are realizing that they are knee deep in IEP crap

At this point I couldn't resist smiling and telling them the Pre-K team who developed her IEP told me that you have a "great" PE program with a "really wonderful coach." Ironically, when the Pre-K team was mentioning this I was looking at their faces and realized something. More than a few of them didn't give this placement a snowballs chance in hell of working.

"Here you come again. Just when I'm about to make it work without you."

How many times have i been through this? Let me count the ways. There was a time when I would have been a basket case after a day like today. Whether foster child or adopted child it wouldn't matter. I loved them all the same.

Will this work? Maybe. Maybe not. Will it be the teachers fault if it doesn't work? Obviously not. The teacher and the aid couldn't hide their enthusiasm and compassion even if they tried. If anyone can adapt to my daughters special needs it will be them and not because there is an IEP looming over there heads. Or in this case not looming over their heads. When I think of the people i most admire in this world teachers are on the top of the list. Dear God...they are saints in my eyes.

I have many friends with special kids who would slap me for my attitude. Their motto's? Fight Fight. Fight. I have two friends who have sued the state they lived in and won. Now that's impressive. And I have to say this ...I'm not a complete idiot...if this was The Boy who has Osteogenesis Imperfecta type 3 I would never send him into a setting like this. He is far too fragile and would be dead the first week. With OI you really can't fly by the seat of your pants.

This is not The Boy. This is The Baby. She is fragile but not as fragile. It could be a wonderful placement for her having met the teacher and the aide. Or I could be delusional and it could be a disaster. I am thankful this is my last special child in the public school system because I am tired of realizing over and over that we really cannot accommodate every special child in this country irregardless of what you write down on a piece of paper because you are legally obligated to.

Am i a coward? Maybe. In the meantime, I'm singing. I'm singing while I'm shopping. You see...in spite of my scrimping, saving, thrifting and buying one little outfit at a time for the baby's school clothes wardrobe it was all to no avail. This school has decided this year that they will all wear uniforms. I was informed of this today. The day before school begins. Just where do I find school uniforms in size 18 months?

"Here you come again. Just when I'm about to make it work without you."

Graduation Day For The Baby

Photo by The Boy

Thumbs up!

I'm out of here.

Parenthood is filled with many ironies. How can such a happy day be so terribly sad as well? Like this morning for instance. This morning The Baby graduated from the developmental pre-K program she's been attending. Oh, how I wish she could have stayed forever rather than transferring to public school. Unfortunately, it doesn't work that way. This is the same pre-K that The Teenager went to over 14 years ago. All four of The Teenager's teachers are still there. That should tell you about the heart, soul and dedication found in this program and the people who make it so special. I will miss all of them terribly.

I told The Baby's teachers it was going to be sad not seeing them anymore since The Baby is the omega child of our family. The teacher replies, "Isn't that what you said when the teenager graduated 14 years ago?" Yikes. And yikes, again.

Photo by The Boy

So here she sits waiting for her name to be called to receive her diploma and when it is, the physical therapist states to the good-sized crowd, "The Baby will be walking to receive her diploma." WHAT?

Break out the hankies and click to enlarge the next three shots paying careful attention to the looks on the faces of the adults. I am not exaggerating when I tell you the crowd went wild. The applause and shouting from parents in the rows behind me was thunderous. I was blubbering like a baby wiping away gallons of tears with the one thing I could find. The paper towel I had just wiped the floor up with when The Boy spilled my coffee.


Each precious child was introduced with a laundry list of their strengths and gifts. Some were mother hens. Some fabulous dancers. Some helpers. And The Baby's gift?

Her smile. Of course.