It wasn’t supposed to begin with.

It wasn’t supposed to begin this way.

It was supposed to be a momentous occasion when the boy who wasn’t supposed to make it to his first birthday made it to his first day of kindergarten.

When I was a kid not everyone attended pre-school or a pre-k program. Kindergarten was the first day of school. THE FIRST DAY OF SCHOOL. For everyone.

This boy of mine who was so early for the day of his birth and so very “late” for so many things after that (first steps, first tooth, heck his first poop was after 43 days) was going to be on time for one major thing in his life. To do something at five and half years old that every other five-and-a-half-year old was doing.

The first day of kindergarten. At five years old with all of the other 5 year olds. On the same day as everyone else.

Now he’ll have to start school a week late. They robbed us of that milestone.

****

It began, as so many of these things do, with a phone call. A call from the principal last week to let us know that the lift that was being installed to bring Liam’s wheelchair up and down the short stairway to the gymnasium and music room wasn’t going to be ready for the first day of school. Liam would still have access to those rooms but would have to leave the building and re-enter through another door to get there until the lift installation was completed. She explained that she understood how this was not ideal and that it was a priority to be fixed and that making Liam go outside was unacceptable. She also told Karin  ‘come to my office next week on orientation day and I’ll show you his classroom and the lift and the doors he’ll have to use to go in and out.’. Remember that last bit. It’ll come into play later.

So yeah, it’s a huge pain and it isn’t fair to Liam to ask him to go outside to get to his classes when it rains, or it gets cold (it is New England) but let’s face it, we are going to have to work with these people for years and years, and throwing a fit about it doesn’t do us any favors yet. So we remained calm and decided that we would set our own personal deadline for them and that if we didn’t see any progress two weeks into the school year we would pursue the matter further. Besides, the fact that the principal called us to talk to us about it two weeks before school even started made us happy that at least they were communicating with us well.

Or I guess they were.

*****

It wasn’t supposed to begin this way.

I didn’t want to begin my son’s first day of school as the angry, demanding parent of the kid who needs some special attention and accommodations. If you start at a ten there’s nowhere to go for when the big problems come up . To build a reputation as a reasonable and understanding parent who understands the challenges that educating a child like Liam can present. By starting the school year with this many big problems they are robbing me the opportunity to build that reputation.

We were supposed to be celebrating Liam’s first day of school.

It wasn’t supposed to begin this way.

******

Tomorrow is orientation day.  I know this because I am looking at the letter that the school department sent to us in May. It was the last time we received anything from the school department that mentions the start of school. And I quote…

This year Kindergarten begins on Wednesday, September 10th; however, on Thursday, September 4th, we will have a “Welcome” meeting at 10:00am, where you and your child will be invited to meet the principal and teachers, visit the kindergarten classrooms, and discuss the expectations of kindergarten for your child. In addition, while there, we require that you schedule a 30 minute appointment so that the teachers can administer a short screening test. Appointments can be scheduled Thursday, September 4th in the afternoon, or anytime (9-3) on Friday, September 5th or Monday, September 8th. There is no school on Tuesday, September 9th.

Well that was the last communication we received about the start of school until the phone call today. It’s always the damn phone.

This time it was Liam’s teacher. Knowing that in our IEP we discussed a modified schedule (going in late) to start the year she had called to discuss what time Liam would be coming to school. During a frustrating conversation trying to decifer what the best time for the class would be (during a classroom or activity change so as not to disrupt things more than we already are)  the teacher and Karin settled on 11:00am. Which was when the teacher then explained that she’d see him in class for his first day of school tomorrow.

Tomorrow?

No, no, no tomorrow is orientation day. Our “Welcome” meeting. The letter is on the fridge. The dates are circled on the calendar. The 10th is the first day of school. I used a vacation day from work for it. We called in favors to get nursing coverage because our nurse needed the 10th off for an important obligation. We were augmenting Liam’s sleep and seizure med schedule to prepare. We scheduled doctors appointments for this week. We were doing everything we could possibly do to make sure that Liam doesn’t miss the first day of school, including planning on bringing him in at the normal time on the 10th and seeing how he did with a full day on his first day. The 10th was the first day of school. Tomorrow is orientation day.

“Well not for the special education kids. The inclusive classroom first day of school is tomorrow.”

And that is how the school department decided to communicate to us that Liam’s class was different from all the other kids. Liam’s class didn’t get any communication. Liam’s class didn’t get to have a’ “Welcome”  meeting with their teacher and principal to discuss the expectations of kindergarten for our child’. Liam’s class didn’t get to fully prepare themselves for the first day of school. Instead we got about 20 hours of notice.

Karin explained that we have friends whose children are in the same class and also expected to begin school on the 10th, including one particular child who would benefit greatly from seeing his classroom before the start of the school year. The teacher seemed put off not by the news of this huge miscommunication complete and total lack of communication with families that need it most, but by the fact that she was now going to have to call all of the incoming kindergartener’s families to let them know about the change as well. Sure enough our friends got their own call letting them know that their child’s first day of school was not next week but was in fact tomorrow.

It wasn’t supposed to begin this way.

*****

At Liam’s pre-kindergarten check-up yesterday his pediatrician reminded us of a conversation we had when Liam was only months old about realistic expectations of his life and whether or not he would survive his first year and how remarkable it was that he was about to start kindergarten. None of this changes that. Liam is remarkable. He is remarkable enough that his family deserves to get the communication to adequately provide for his education. I know this BECAUSE EVERY CHILD AND THEIR FAMILY DESERVES THAT!

I don’t want Liam to be treated special. I don’t want us to be treated special. I just wanted us to be treated the same as everyone else. To be told what is going on. To have the same chance to discuss expectations that every incoming kindergartener’s family who does not need the services of special education got to enjoy.

It wasn’t supposed to begin this way.

*****

I’ve called the principal three times since then. Three times since Karin found out that not only are we now not ready for Liam to attend the first day of kindergarten, but that I won’t get to enjoy the celebration of the milestone with him unless we wait and make him miss the first week of school, and that the stress and phone calls of ensuring competent and qualified nursing care was all for nothing, and that we wouldn’t be afforded the chance to see Liam’s classroom before hand. or at least I tried to. the number seems to be for the whole school, which doesn’t really matter since no one ever answered it. I called her once immediately after I found out. The call went straight to voice mail. Realizing that it might still be the end of everyone’s lunch hour I waited an hour to call back.This time, I politely but sternly explained that I find this level of communication unacceptable,  I reminded whoever answered that voicemail that less than a week ago the principal told my wife that they would see each other and have time to meet on orientation day giving us no indication that it was actually the first day of classes and that Liam was expected to attend, I explained that I expected a call back.

I didn’t get one.

I called the pre-k program Liam attended last year which is in the same school building as Liam’s kindergarten class and asked if they could help me get in touch with the principal and they gave me the same number that I was already calling.

I called again an hour and a half later, and left another message asking if we should even attend the orientation. I asked if we were going to be given a oppurtunity to see the classroom and the lift before sending Liam into school. I asked if perhaps the teacher had been mistaken because again, we had just spoken with the principal last week and she gave us no indication of this being the first day of school, and the letter we received from the city explicitly told us this was not the first day of school. I explained that it was very important that I get a return call answering those questions for me.

I’m still waiting by my phone.

So not only did this entire problem begin with a lack of communication but apparently my child’s school believes that the remedy to the problem they created is to provide even less communication.

It wasn’t supposed to begin this way.

*****

Maybe I set my expectations too high. I’ve heard so many of my friends who have children with special needs complain about the battles they’ve had to have to advocate for the services and attention that their children need. Based on the amazing job done by the staff of Liam’s pre-K program (IN THE SAME BUILDING AS WHERE HE IS GOING THIS YEAR)  I naively thought that wouldn’t be the case for us.

“Not in our school!” I used to say to anyone who would listen. “The school department has bent over backwards to try to get Liam the things he needs!” I used to say.

#notallschooldepartments

I guess I’m the fool.

And in one afternoon, I have lost all of my faith in the teacher responsible for my child’s education for the next three years, and the principal who supervises her, that they will communicate, needs, issues, safety concerns to us regarding Liam’s education. They have their work cut out for them trying to earn it back. Miscommunications happen. Maybe the city didn’t mail out the letters they meant to for the few families of incoming kindergarteners in the inclusive special education program. But then to add insult to injury you refuse to return three phone calls about it? Not about some event in a few days or weeks but refuse to return phone calls regarding something as momentous as a first day of school and happening as quickly as less than 16 hours away, and you don’t return the call?

A simple phone call back was all I was asking for. To know what was going on with my child’s education.

*****

I realize that posting this here may put my relationship with Liam’s educators in jeopardy. I’m ok with that. I use this blog to highlight the wonderful parts of parenting Liam, and believe me it is mostly wonderful, but even if the principal calls back at 8am tomorrow and is all apologies, I will not feel guilty about being angry about today and I will not feel bad about sharing it. Because along with all the fun stories about the zoo and road trips to Jersey A great deal of our time is spent in frustrating beurocratic loops of phone calls and excuses with insurance companies, pharmaceutical companies, medical equipment companies and state agencies. Now I’ll have to add schools to that list.

I’ll share it because while I was calling the principal three times today Karin was calling Liam’s durable medical equipment company for about the 6th time about the filters for Liam’s vent that they have on back order that should have been changed out of his vent three weeks ago, and the pulse oximeter probes that are supposed to be changed every week but we haven’t been shipped any new ones in four weeks. That was after she called the state about their problem with the handicapped placard form for Liam’s van and the medical insurance company that denies everything on the first submission (unless it’s something we need a denial letter for so another agency will pick it up THEN of course they drag their feet on denying things).

Frustrating situations like this are the pressure for which we need the support.

Besides, Liam’s first day of school wasn’t supposed to begin this way.

I’ll tell you one thing though, his first day of home schooling will begin exactly as it’s meant to.

And at this point, it may just be next month.

5 comments

  1. Was Liam ever assigned a case manager through the Child Study Team or Special Education department? Usually that person is a social worker, school psychologist or learning consultant who manages any modifications or accommodations with a child’s principal and teachers. I would call that department directly as it is usually through there that things are handled. But I’m in NJ so things may be slightly different…I really think it is the same procedure though. I’m wishing you all the very best for a smoother transition!

  2. I agree with Meaghan’s comment above. The district’s special education department should have a ‘go to’ person who you can contact and who can act as your liaison. The more they get to know you and become familiar with Liam and the accommodations that he requires the smoother his transitions will be. I also agree that Liam’s Kindergarten year shouldn’t begin with disappointments. As a retired teacher, I hope this issue is just a sad mis-communication between the principal/teacher/school, the sped dept, and your family and not an indication of how things will go for the rest of the year.
    My former district has a SEPAC (Special Education Parent Advisory Council) which describes itself as “We are parents of special education students who have joined together to provide information and support to each other. We meet regularly with school administrators to give our input on the policies and programs that affect our children.” If your town has something similar they will be a great resource for you because they are parents who have already gone down a similar path.
    Keep being Liam’s advocate ~ you know him best. Communication is key… now the school needs to realize that too!

  3. Oh my gosh!!! How absolutely frusturating! So my son has Miller Dieker also and we just went though something very similiar as my son transitioned from the preschool (which was great so we were totally caught off guard) to transitional kindergarten at an elementary school. It took tons of emailing (which is good to do so that there’s a paper trail and you can prove hey no one responded to us!) and we had to get the district head of special education involved to get it resolved. We too want to be seen as reasonable but also setting the precedent that stuff like this can’t take place. You have every right to be frusturated and feel like this was stripped away from you all because it was and it’s not okay in any way! I hope that they get it together, like you we have homeschooling on the back burner as a very viable option if things continue to go haywire. All of this, the phone calls, emails etc for everything takes away so much valuable time and energy that is already not the most plentiful just because of the care required on a daily basis. That energy and time could be so much better spent as quality time with Liam (or hey even each other ha!) versus trying to figure all this out. I get so frusturated about that, not only is it robbing you of the milestone but even more of your guys time. I feel your anger, I feel it to. Hoping you guys get not just a response but an appropriate response. Thinking of and praying for you guys. We’re on totally opposite coasts and facing the same things, this is a huge problem!!! I haven’t blogged in a long time but this is motivating me to put it out there!

  4. I would love to say something comforting. Would love to.

    Can’t.

    I sent mine to Kindergarten thinking things were going to be different. He spent almost the entirety of afternoon Kindergarten sleeping in the ‘Quiet Room’ since they could not manage his aggressive behaviors.

    It sure was different. It was more like prison than school.

    And it was sheer luck that I found out about it at all. Dumb stupid luck.

    I respect that you blogged about it. I did not. I just pulled him out and sent him somewhere else. We were lucky to have the option. Many do not. The disabled are treated like garbage in this country. It’s disgusting.

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