Walking, Walking

Well, we’ve started getting ready for school to start. This next week we will start going to bed earlier and waking up earlier. Zipppy has started reading a book that he needs to read for the first day of school. And Chloe has ramped up her walking.

During the summer, Chloe doesn’t use her walker much. For big trips she uses her wheelchair; for smaller trips she just walks and holds our hand. So each summer we have to purposely keep Chloe’s distance walking up so she will be able to do it the first day of school.

School is physically taxing for her, and if the walking from class to class wore her out, then she’d have nothing left for her academic work.

This summer, distance walking/exercise hasn’t been our priority. (Reading and communication and self-care have been.) And over the summer, Chloe’s hips and hamstrings have gotten tighter and tighter. Her body has been working against her somewhat as her feet and legs just don’t cooperate with her for the most part right now, and I think it’s painful for her to walk most days.

But since school is only 2 weeks away, it is time to get the girl back in shape!

When we went to the mall yesterday for our first day of mall walking, I expected some complaining and some tuckerin’ out. But Chloe was a champ! She walked twice the distance I thought she’d be able to and never complained and never asked to quit.

Today was day two of mall walking and she walked even farther. Yay! I’m so proud of her!

A side note of additional victory is the fact that she is able to function in the mall! It is loud! And there is lots to take in! It didn’t seem to bother her, and she enjoyed feeling the windows and seeing the sights.

Overall, I stand amazed! She never fails to surpass my expectations! 🙂

Her Voice

Delight!

Recently I also delighted in the sound of Chloe’s voice. Chloe is 10-years-old and is mostly nonverbal. When she vocalizes something, we notice. And we smile. And we’re proud. And we think it’s precious.

We were at a group Bible study recently at a friend’s house. Chloe was back in the little girls’ room playing toys. And several times she mimicked a talking toy. I heard her clap a couple of different times. She talked off and on, unaware that anyone was listening.

But I was listening. I heard it. And it made my heart glad. It was difficult to follow the adult conversation because I was so taken by the sound of Chloe’s voice in the next room.

I love that precious little girl. And anytime she is talking, it makes me stop and listen. And my heart is so filled with singing and smiling.

Keep it up, little one!

She Knows!

A friend of ours is our number one respite care provider for our kids. Zippy refers to her lovingly as his 2nd mama. She adores my kids, and the feeling is forever mutual.

This week she bathed Chloe. During the bath the bath water got dirty, as is often the case with bathing a dirty child. She was draining the dirty water and planning to refill with clean water so Chloe could continue to play in the bath tub. Chloe started to put the washcloth in her mouth to suck on it, but the sitter told her NO, explaining that the water is dirty … you don’t want that in your mouth … that’s yucky … don’t put that in your mouth … I’m draining the water to get some cleaner water … this water’s dirty … we don’t want this water in your mouth … it might make you sick … it’s yucky … this is very dirty … don’t put that in your mouth …

And Chloe turned and looked right at her, and clear as a bell and with a little exasperation in her voice said, “I KNOW!”

As you can imagine, the sitter thought it was hysterical and very clearly got the message that Chloe wanted her to shut up about the dirty water and the washcloth!

Love my girl making herself perfectly clear! 🙂

Ten years and Two days ago . . .

(This post is a day late since I spent the day sick in bed yesterday.  Sorry, baby girl.)

WARNING!!!!  CHILD BIRTH STORY TO FOLLOW!!!  But I think it’s rated G.

Four score and seven years ago . . . .

Oops.  No, that’s not right.

Ten years and two days ago, Christmas day 2001, we spent a fun day celebrating in our home in Grand Rapids, Michigan.  Elliot was barely 2 years old, and Zippy was a mere 7 months old.  My parents and one of my brothers came to spend Christmas with us since we couldn’t travel — I was due to have my baby girl any day now.  I was very much, very big with child.  In fact, I was in labor for a good part of the afternoon and evening.  Nothing real big, but I could tell things were happening.

The funny thing about being due right around Christmas is that you don’t know if 2001 is going to be the baby’s first Christmas or if 2002 will be the baby’s first Christmas.  Those 1st Christmas outfits either need to be newborn size or 12 month size.  The 1st Christmas ornaments either need to say 2001 or 2002.  Tricky.  It was Zippy’s first Christmas, and I guess the way it all ended up, he didn’t have to share the day with his baby sister.

My brother and my parents went to their hotel sometime in the evening.  We put the kids to bed and went to bed. I woke sometime in the middle of the night and knew the time was close.  I woke Paul and told him I was going to take a shower –how vain!– and then we needed to go to the hospital.  When I had Elliot 2 years earlier, it was a very fast delivery, and I assumed this one would be similar.

After my shower, I called my parents and told them it was time.  They headed back to our house to stay with the boys.  They were staying close by.  And the hospital was very close by, too.  Closeness was ideal since we were actually in the middle of a blizzard.  Yes!  Lots of snow and wind to drive through.  My girl was going to be born in the middle of a blizzard!  She had missed Christmas, but was making it just in time for her first snow!

My parents arrived, and my sweet dad wanted to hold hands and pray for me and the baby before we left.  What he didn’t understand was that I had planned this thing down to the wire, and I didn’t schedule time for prayer!  I told him he’d better make it a quick one or that they’d have to do it without me!

We arrived at the hospital barely in time for me to get my epidural.  As soon as we were a little bit settled, the doc came in to administer the epidural and asked Paul to leave the room for it.  It’s always unsettling to be asked to leave the room when someone you love is about to have something done, but this doc didn’t want anyone in there for the epidural.

While receiving the epidural, I felt a pain that was very unfamiliar — it was big and hurt and felt just weird.  I told the doc so.  Right in the middle of receiving the epidural — you know the hold-your-breath-and don’t-move-a muscle part?– the pain intensified, and my water broke.  Wow.  What an embarrassing mess.

Immediately the attending doctor noticed that there was meconium in the water.  Laymen’s terms:  the baby had pooped and was possibly breathing the poop, which isn’t ideal.  Bummer Number One.

When the epidural was done, they laid me back down to check me, and surprise!  The baby was crowning. . . .well, no . . . not exactly . . . that’s not a crown. . . . that’s really more of a tiny little baby butt. . . . she’s breech.  Bummer Number Two.

Unfortunately about that time, I started shaking uncontrolably — a common reaction to receiving an epidural, but it looks and feels ridiculous.  I was shaking so badly I feared that I might just quake right off the bed onto the floor!  Bummer Number Three.

Remember Paul . . . out in the hall, waiting?  Yeah, he came in the room at the same exact time that the emergency team came in.  So picture this:  Your young wife shaking with amazing convulsions surrounded by teams of docs and nurses and a tiny little incubator and tiny little stretcher . . . the room filled with excited movement and preparation.  Things looked serious and scary.  Yeah, Bummer Number Four.  Poor guy.

I tried to look natural through my convulsions, smiling and reassuring my poor husband that everything was really better than it looked.  I could tell he was in a panic.

“It’s just a funny reaction to the epidural.  I’m totally fine.  And they just learned that the baby is breech so they brought in the NICU team to be here incase it’s needed.  And they’re all here and ready in case I need to have an emergency c-section.  It’s totally fine.  I promise.”  <smile.  shake.  shake.  hold on to the bed for dear life so as not to shake onto the floor.>

The doctor gave us a choice of doing a c-section or going about as planned.  I opted for keeping on keeping on since I had a 2-year-old and a 7-month-old at home — not the optimal time to be recovering from surgery.  Let’s do this thing.

So we did.  After only a very short time, the baby came out butt first.  Then her little legs.  Then her body and shoulders.  And then her precious little head.

She didn’t have the best of scores when she was born, but she was okay.  Seems like they took her away maybe because they couldn’t get her temp to rise.  I don’t remember much about those details because I was still laboring like crazy.  For some reason (I’ll spare you the details because they don’t matter, and I don’t really know them, and I have a terrible memory to boot!) my body wasn’t cooperating.  It was going on and on like I still had some major delivery to make or something.  The contractions were absurdly painful.  And the doctors had to give me medicine to continue my contractions to try to get the rest of my body to start recovering and behaving.  So I lay there for another hour or so contracting and in so much pain!  Ugh.  Not my best hour.

My precious husband came in the room holding a little baby burrito with a little hat on her head.  “What are we going to name her?” he asked in a sweet whisper.

“Get her out of here and quit asking me questions!” was my rational, loving response.  Yeah, I told you it wasn’t my best hour.

I think it was in that hour that Paul named the precious burrito Chloe Annette, a name we had talked about and agreed on earlier.

Seems like I yelled at Paul a few more times and let the doctor have it a couple of times, too.  I guess I needed someone else to join me in my misery.

Finally, things started to calm down and I was able to start recovering.  And I allowed Paul and Baby Chloe to come back in the room.

I held that little bundle and looked at her sweet, pink face.  And she looked just like my father-in-law!  Seriously!  The nurses were telling me it was time to nurse her, and I couldn’t get my father-in-law’s face out of my mind!!!  Funny!  And a wee bit awkward.

Once I got over the additional hour of excrutiating pain and got over the whole father-in-law thing, I was able to completely and totally fall in love with my new baby girl.

What a precious angel!  My Snow Angel — born in the middle of a blizzard 5 hours after Christmas.  What a perfect gift!

I can’t believe she’s 10 years old!  Wow!  Time sure flies when you’re having fun!

Happy Birthday, Chloe!

Excluded

Today Chloe came home early from school because she wasn’t feeling well.  Since she was home early, she was in the car with me when I picked Zippy up from school.  And since Texas’ temperatures have fallen out of the triple digits this week, I had the van windows down while we waited.

Right around 3, all the 3rd graders at this, our neighborhood elementary school, paraded past our van.  For those of you who don’t know, Chloe should have been one of those 3rd graders, but Chloe was not allowed to attend this school this year because of her disabilities.  All the 3rd graders walking past Chloe’s window knew Chloe; they liked and missed Chloe.  One by one, the children slowed their pace and greeted Chloe by name through her open window.

There was a chorus of “Hi, Chloe!”      “Hi, Chloe!”

Chloe silently waved at her friends as they passed by.

Several of the children slowed and stared at Chloe as they were surprised to be seeing her.  “Chloe!” was repeated a dozen times.

It was odd to see their initial excitement at seeing their friend turn quickly to questions as they wondered why they hadn’t seen her this year.  I’m sure they wondered why she was there  . . . and not here with them.

It was another painful and pathetic experience.  I choked back tears, wondering what Chloe and the other children were thinking.

“The difference between children with disabilities and children without disabilities has very little to do with the children but, instead, has to do with the way adults react to them.”           ~ John Hockenberry ~ 

Good Mama / Sleepy Girl

Image via Wikipedia

When I went in Chloe’s room this morning to wake her up for school, I found her asleep on the floor of her room — books and toys strewn about.  She had gotten out of her bed at some point and played her heart out in the dark in the middle of the night.

As I tried to wake her and get her stirring, I realized that this sleepy girl had not gotten much sleep at all.  Unfortunately, the night was over, but Chloe’s sleep had only recently begun.

I struggled but got her dressed, her eyelids heavy and usually closed in sleep.  I worked hard at propping her up so I could do her hair — even though her head kept bobbing in and out of sleep.  I sat her in her chair for socks and shoes, but she slept through it.  I went to the kitchen to make her breakfast, and found her snoring in her bedroom floor when I returned.  She was one tired girl.

So then the arguing began.  Not so much arguing, I guess, as debating.  The silent debating in a mama’s head, trying to decide what to do.  Take this sleepy child to school?  Put this sleepy child back to bed?  Take her tardy?  Pick her up early?  Splash cold water on her face?  Turn up loud music?  Put her in the car?  Leave her in the floor?

I was pretty sure I needed to take her to school, and besides, I had to take Elliot to school regardless so Chloe had to go to the car.  I managed to wake her enough to stand her on her feet, and she walked obediently to the car.  She climbed up in her carseat, and I buckled her up.

After 1/2 mile or so, I caught a glimpse of her in my rearview mirror.  She was snoozing again.  Oh, sheesh!  What was I supposed to do?  I can’t take her to school if she can’t even stay awake for the car ride there!  But would that be rewarding her for her bad middle-of -the-night choice?  And besides, I’m having discussions with the principal and trying to arrange to do some observations of Chloe.  How can I observe her school day if she’s at home!?  Ugh.  What to do?

I drove to Chloe’s school and parked.  I looked at her sleeping in the back seat and wondered what to do.  I decided to wake her up, take her to school, and call in a little bit and see how she’s doing.  If she’s still sleepy and sleeping at 10, then I’ll pick her up and put her to bed.

I took her in and explained to her teacher how sleepy she is.  I told her I’d call her in a bit to check on her.  Hopefully they’ll be forthright with how she’s doing.

When I pulled up at Elliot’s school 15 minutes later, I said sorta to myself, “I wonder if a good mama would’ve taken her school, or if a good mama would have taken her home and put her to bed.”

Elliot answered without hesitation, “Well, you’re a good mama . . . so I guess a good mama would’ve taken her to school.”

And that was that.

I’ll call and check on the sleepy girl in a little bit, and I expect to be picking her up early from school today.

Again, the bed cannot get here soon enough!!!

Hoping for a Bed!

Well, if you’ve been reading long, you know we’ve been in the midst of sleep issues and bed fiascos for quite some time.  If you’re new around here, you can read about our saga here, here, here, here, and here.

Chloe takes forever to fall asleep — literally hours.  And she completely lacks judgement about wandering in the night.  It is not unusual for her to wander right out the front door or into the garage.  It is not unusual for her to get into trouble — silent trouble — while the rest of us sleep on.  We have tried to keep her contained for years for her safety.

Every couple of years, I take a chunk of time and attempt to train her to stay put in her bed.  But each time I have realized that she just isn’t trainable in that yet.  I experienced that disappointment again this summer as I tried to train her to stay in her bed and to go to sleep when we say, “Goodnight!”

But no.  I was unsuccessful again.  I ended up hugely sleep deprived and no closer to having Chloe trained to stay safely in bed.

So our new plan is to try to get a new bed.  A safe bed.  A bed that hopefully insurance and Medicaid will cover; however, it is not at all a guarantee that they will.  We have our eyes on Beds By George.  If insurance doesn’t pick it up, then it will be impossible to get the bed since our first quote from the company is over $10,000.  Yikes!  But we are keeping our fingers crossed and praying that it will be approved.  And maybe, just maybe by Christmastime, we’ll be pretty close to getting Chloe a nice new bed that will help her stay safe.

Chloe is also scheduled for a sleep study next week.  It is something that I’ve thought about doing for years, but other things have always been more of a priority so it’s been put on the back burner in the past.  But this summer after watching her fall asleep and listening to her fall asleep, I had some concerns again and finally called to schedule the sleep study.

The sleep study will show any seizure activity, sleep patterns, obstructive sleep apnea, how deeply she’s sleeping, patterns of relaxation . . . . all kinds of things.  The study could show us a whole lot and be really helpful and answer a lot of questions . . . or the study could show us absolutely nothing.  We’ll see.

I’ll let you know later about an update on Chloe’s sleep issues.

And the truth is, too, that Zippy should really have a sleep study done, too, probably.  But let’s just take this one at a time, shall we?

That Stinks!

After a very tiring and stressful week, it doesn’t take much to push a mom over the edge.  But then again, this was a bit much . . . .

I haven’t mentioned our dog, Coco, in a while.  For one, I’m not sure he’s a keeper or not.  I mean, some days it is all I can do to feed and care for my children — much less take care of a dumb ol dog.  Ya know what I mean?

Well, Coco has continued — even after a year!– to pee and poop in the house and chew up every little thing in sight.  He drives me absolutely bonkers.  I’ve been close to pulling the plug on the whole dog thing several times, but this past week was a doozy.

The scene:  a very stressful and tiring week; a very exhausted and hormonal mama; late in the day — almost bedtime; even though the day had been trying, I had strictly stuck to Coco’s schedule attempting to keep the carpets free of messes.

Apparently when I sat down to watch a show with Elliot and Zippy, Coco pooped in the other room.  No one saw or smelled the poop.  It was time for Coco to go back in his crate so I put him there.

Shortly after that time, Chloe wandered into the poopy room and promptly stepped one of her bare feet right into the poop.  I’m guessing what happened then is that she sat down to try to get the poop off of her foot . . . at which time she sat in another poop.  Realizing she had sat in another poop, she must have scooted back to try to clean that up.  And so on, and so on, and so on.

All I know for sure is that when I walked in a few minutes later, Chloe and the entire room were covered in very smelly, smeary dog poop.

I screamed and grabbed some wipes, not really knowing what else to do.

Chloe was very frustrated with the mess (and probably disgusted with the smell that she couldn’t get away from!) and was kicking around.  Every time she touched me she left a doggy poop handprint.  I very quickly was gagging and crying and saying unkind things about the canine.

I promised to get rid of the dog as soon as I finished the clean-up.

I grabbed Chloe, stomped off to the bathroom and threw her in, scrubbing and gagging  . . . and scrubbing and crying  . . . and scrubbing and making promises of terrible things done to dogs.

When I had Chloe scrubbed up to my liking, I turned to scrubbing the carpet, still crying and gagging.  And promising to get rid of the dog before sunrise.

Communication

“She needs to learn to communicate,” the angry and closed-minded school officials repeated over and over.  “Until she decides communication is important, she will struggle.”  “She needs to gain communication.”  My and my friends’ attempts to convince them that she DOES communicate fell on deaf ears.

And then I return home to my kids.  I return home to my daughter who doesn’t communicate.

While playing in her room with Mimi the next day, Elliot came back and joined them.  Apparently Chloe was annoyed with his being there.

“Out!!” Chloe vocalized and signed with both hands.

Elliot, laughing at her strong feelings and demands, stood at the door, continuing to annoy her.

Chloe stood up, went to her bedroom door, gave Elliot a good shove, and slammed the door in his face.

Hmmmmm.  Too bad Chloe doesn’t communicate her feelings and needs.

My Cry for Inclusion

(Settle in for a spell . . . this is a LONG one!!)

Several of you have asked for an update of our recent IEP / ARD Meeting.  And many more of you prayed for us to have wisdom and direction as we made choices for Chloe’s education for next year.  I really appreciate your thoughts and prayers and concern for us.  It’s been tough.

Here’s a quick update.

We are currently in disagreement with our school district about educational placement for next year.  We sat through a grueling 4 hour IEP/ARD Meeting the last week of school.

Paul and I (and my good friend who accompanied us for support!) stated the importance of Chloe’s continuing to attend her neighborhood school.  She made friends there.  She is progressing ahead of schedule on all of her goals and objectives.  We believe that she needs some additional support from the special ed teacher, but we want her to stay where she is.

The district administration made it clear that inclusion — at least to the degree that we were asking for — does not line up with their philosophy.  Instead, our district believes in sending students with severe disabilities to 4 different campuses at which they do special ed really well and are better equipped to educate a student like Chloe.

After 4 hours of no progress towards an agreement, we adjourned . . . later disagreed, and will meet back in August for more discussion.  Again, I would love your prayers for wisdom, direction, and favor.

Our goals for Chloe do not include shielding her from the real world or sticking her in a “special” classroom away from her peers and neighbors.

Our goals for Chloe include her being a part of her community — not a resident in an institution with other folks with disabilities.

The decisions we make today will decide what her life is like 10 years from now and 20 years from now and 30 years from now.  Every decision we make needs to take her closer to our ultimate goals for her.  Removing her from her home campus would not be moving her toward our ultimate goal.  No, removing her at this point would be moving in the oposite direction.

Below is a statement that I read at the 4 hour IEP / ARD Meeting.  I also sent it to a few people in our district to let them know what was going on.  It is long.  It is heartfelt.  It is honest.  And it was all but ignored in our meeting.  But I wanted to share it here since it really does communicate my and Paul’s hearts and desires for our daughter.  And it might help some of you understand why it’s so important for Chloe to be included.  (I have removed names of people and of our district.)

I am writing this letter to ensure that all of my thoughts are communicated at the review ARD of my daughter, Chloe.  I will read it in its entirety, and I ask that a copy of it be included with the ARD paperwork.

This year has been a rough one for Chloe.  And while some people worked hard to try to make this year successful for Chloe, the truth is that this year was not the success we had hoped for.  It literally pains me to know that most people on this team believe that this placement failed because Chloe wasn’t as smart as we thought she was . . . that Chloe is too dependent on her aide . . . that Chloe’s disabilities are more severe than we thought . . . or that RTE just doesn’t have the staff to support such a placement.  None of those reasons led to the failure of this placement.  The truth is that this placement was unsuccessful because of a lack of training.  And that lack of training led to a huge disservice – a disservice to the staff working with Chloe, but mostly a disservice to Chloe.

Because of Chloe’s achievements last year in 1^st grade, the decision was made to move Chloe from a <self-contained special ed> placement to her home campus with supports.  Included in the supports was a full-time aide to assist her with staying on task and with self-care, hygiene, and general safety.  The transition was a hard one, and the first 3 weeks of school were unbelievably difficult for her.  As a reminder, Chloe was crying and screaming and throwing herself on the floor all day everyday for the first 3 weeks of school.  Chloe was hitting and was stressed out and miserable.  And all of this was going on unbeknownst to us, her family.  I didn’t call or visit during those first 3 weeks — I was attempting to give <the school staff> some time and space at the beginning of the year and was waiting before sticking my head in, knowing that I would be contacted if things weren’t going well.  As it turns out, things were not going well at all, and I was not contacted.  We will never know the impact those traumatic 3 weeks had on Chloe and on her success at <her home campus>.

Then a little more into the school year, her general ed teacher left on maternity leave – perhaps not the wisest of placements for Chloe.  So about the time Chloe was learning that maybe school was a safe place after all, she was faced with another big transition – getting used to a long-term sub.  Then a few weeks later, Chloe’s aide quit, and Chloe was faced with another big transition of acclimating to a new aide.  And shortly thereafter, Chloe’s general ed teacher returned – presenting Chloe with yet another big transition.  (I hope that something was learned here about thinking through classroom placement for special ed students you may try to include in the future.)

I partly think that without some of these negative events, maybe Chloe would have been more successful – that maybe if Chloe felt more secure and didn’t have so many transitions to work through maybe she would have had a better year.  We don’t know how much these events and insecurities have affected her.  But I truly think the failure of this placement falls on the lack of training.

I’ve already thanked <a district staff member> for her efforts and for the time she spent training the staff at <Chloe’s campus>.  It was, in fact, <that district staff member> who approached me about Chloe’s attending <her home campus> this year.  <That district staff member> is a valuable, knowledgeable resource.  She is good at her job and passionate about special education and about children.  But <she> is not an inclusion specialist.  What we were attempting to do with placing a child with disabilities on a campus and in a classroom with typical peers all day is called inclusion, and it’s something that <this district> does not generally practice.  It is a placement that requires new skills and new tools and new thinking.  That is the reason that at every meeting and in every phone call, I repeated the need for training.  That is the reason that I included an addendum to the ARD earlier in the year so that these specific trainings could be listed and referenced.  I listed specific training ideas that I knew were needed and would be helpful for success.  I requested that an inclusion specialist be called in to work with the staff working with Chloe.  I requested that teachers and other staff members be sent to the Inclusion Works conference in Austin in February.  But my spoken and written requests for training were obviously dismissed.  Throughout this year, I have attended not only the conference in Austin but several others locally, and I have never seen any of the people sitting at this table at any of those trainings.  It is the lack of training that made this placement unsuccessful.

At these different trainings, I have met people who successfully include students with disabilities in general education classrooms.  These campuses and these teachers and these aides have undergone very specific and skilled trainings to make it successful.  And I have heard stories from them of children with more severe disabilities than Chloe’s who are included and are successful.  I have heard stories of included students with full-time aides who are successful with that aide because of the training that the teacher and the aide received.  It is possible.  It is happening.  It is working.  But it requires training.  And this staff did not receive that training.

I believe, too, that there is a district-wide prejudice and ignorance that hindered Chloe’s progress this year. At <this district>, if a student presents with more involved disabilities, then, as a general rule, they are bused to a special campus that can service them. Take this quote as a case in point:  “An all day placement in a general education class is not the environment for a student with so many disabilities.”  It is a direct quote from the written statement of a grade level team leader at <our home campus> in regards to Chloe.  This quote and the attitude behind it show the extreme ignorance that is prevalent.  While I think we would all loudly and passionately disagree with the hurtful and prejudiced statement:  “The front of the bus is no place for a person with black skin,” somehow the notion of busing a child to another campus because of her disabilities is an accepted practice. Including a student with significant disabilities is not a common practice in <this district>, and I believe its teachers remain ignorant of this discrimination. It is shameful that these teachers have not been introduced to successful models of inclusion.  It is shameful that what we were asking them to do for Chloe was a very foreign concept to nearly everyone involved.  I think the district as a whole is selling their disabled students short all because of a lack of education and a lack of training of its staff.  And my daughter was one of the victims of it this year.  Many, many times I have heard the <district> mantra of  “Special Education is not a place – it’s a service.”   But I am left wondering after this year:  If special ed is not a place but a service, then why can’t my daughter get the service at her home campus?  Why can’t she be serviced here?  While we attempted to service Chloe at her home campus, there was no sufficient training; and therefore, I feel that lots of precious time was wasted.  And I am not willing to sacrifice anymore of Chloe’s precious academic time while waiting on the needed training to take place.

I think it is because of the lack of exposure to inclusion that it oftentimes seemed that the goal was to make Chloe as much like every other 2^nd grader as possible – to adapt Chloe so that she fit into the 2^nd-grade-student mold in a way that was comfortable for everyone.  Of course, that goal went unmet since Chloe does not fit that mold.  I was told several times early on that <this campus> “does special ed differently” than other campuses, but that is an excuse that I still can’t accept.  I think if more of the staff had been introduced to the elements of and philosophy of inclusion, then this year would have looked very different for Chloe.  Had the staff been educated and trained in inclusion, then they would have had an understanding of why it is important for Chloe to attend school with her peers.  Had the staff been educated and trained in inclusion, then they would have understood that it is not necessary for Chloe to fit into that 2^nd-grade-student mold and they would have had the freedom to do things that are important to Chloe in order to support her.

I hope that everyone at this table knows Chloe well enough to know that her grades and scores are not indicative of what she knows and understands.  I have said from the beginning that there does not exist a test or an evaluation or a worksheet or an assignment that can tell us what Chloe knows and what she doesn’t know.  While most children purposely choose the right answer when they know it because of an intrinsic importance and motivation, Chloe lacks that intrinsic motivation.  Even when she knows the answer, she will oftentimes choose a different one for some reason – mostly just because it doesn’t matter to her whether she gets it right or not.  I hope that everyone at this table knows Chloe well enough to know that she knows a whole lot more than you were able to get her to show you.  None of us truly knows how much Chloe knows.  And that is the biggest reason that Chloe needs to be in general ed – she needs to be exposed to the full curriculum because she very well may be understanding everything taught in the class.  Just because Chloe is nonverbal, just because she is tricky, just because she is stubborn is no reason to assume that she doesn’t understand what is being taught.  I would much rather err on the side of teaching her too much and of expecting too much from her than to pull her out of general ed with the assumption that there are concepts that are too difficult for her.  None of us knows that.

Chloe has made some new friends this year.  Her new friends like and appreciate her.  For the first time ever, Chloe got to experience seeing her brothers in the hall at school.  For the first time ever, Chloe got to experience saying hi to classmates when we went for family walks around our neighborhood.  A privilege?  Or a right?  Whichever . . . Chloe surely enjoyed both this year for the first time in her life, and she’s been in school for 6 years.

This year I appreciated a couple of staff members really working hard to make Chloe successful.  This year I appreciated when a staff member who didn’t understand why inclusion was so important for Chloe went home and researched inclusion and returned to school with more understanding for our situation.  There have been some encouraging, shining stars this year.  But none of these stars were inclusion specialists.  None of these shining stars were experts in doing what we were trying to do.  And, unfortunately, it was the specialists and the experts who were missing from the picture this year.

I believe with all of me that the most appropriate education for Chloe would take place on her home campus, where she can attend school with her brothers and her neighbors just like every other child in this country.  But because of her disabilities, for some reason she has to prove herself in order to attend school at her home campus.  Somehow her disability takes away the right to attend school with her siblings.  It is a deep and hurtful policy that this district believes in.  Yet, while I strongly believe that attending her home campus is Chloe’s legal right according to IDEA and that it is most appropriate for her to be serviced right here on her home campus, I am not willing to sacrifice another academic year to make it happen.

So it seems that our choices are to either make a real commitment to some real training that will lead to Chloe’s success here or to make the decision to move her to a place that better knows how to service her.  Commit to some meaningful, professional, and powerful training to take place before the beginning of next school year or to bus Chloe to a different campus.

And then there was silence . . . . and then there was an abrupt statement from the principal to continue on with the ARD / IEP Meeting.

I think it is obvious that Chloe should be allowed to attend school with her neighbors and with her siblings.  Able-bodied kids have that right.  Doesn’t Chloe have that right, too?

I don’t pretend to think that placing a child with disabilities is a simple thing.  It takes work.  It takes commitment.  It takes training.  It takes effort to do it right.  Chloe’s placement last year was unfair to many involved.  It was a frustrating placement for staff members.  But with the right training, it can be successful.  With the right training Chloe can succeed while sitting right there next her new neighborhood best friend . . . just like every other child in our neighborhood.

And bigger than all of that, inclusion is what supports our lifetime goals for Chloe.  We have goals and visions of her as an adult living alongside the rest of us, making a contribution to society just like the rest of us.  Our decisions today either take us closer to those goals or further from them.  As parents, we don’t have any choice but to push for our daughter to be included.

As I already said, we are still in disagreement and will meet back the first week of August.  Thanks for your thoughts and prayers for us regarding this meeting and this decision.