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.


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.


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.

School Daze.

“Hi Liam, my name is [Sally].” Her name has been changed for privacy’s sake, but each and every one of them came over to introduce themselves to The Boy this morning.

It all started with the teacher of course. Miss Paula was finishing up with story time when our tour of what will probably be Liam’s school next september led us into the pre-school I classroom this morning. 9 adorable little kids of wildly varying educational needs that ran the gamut from “typical” to profoundly delayed, lined up after their routine hand sanitizer rub to meet my boy in between story time and a snack of apple slices and cheese. For Liam, this was the most peer age interaction of his life, and for his part enjoyed all of the attention.

That was the part that I loved so much, seeing that attention. Not the amount, Liam has always been the star of any room he enters, it was the quality of the attention from these kids. Here in this school, Liam will be the new kid but that’s about all that will make him special. His trach? His vent? Didn’t seem to phase these kids at all. Here in this special place all kids are welcome to join in the class.

Next month Liam will turn 3 years old and make the transition from Early Intervention to Special Education. All of his therapies will then become the responsibility of our local school department. Although he is required to be registered as a student Karin and I were unwilling to allow him to start school in January. Not during cold, and flu, and RSV season. So we will bring him into a local public school a couple of days a week for therapy until next september at least.

There are so many intricacies to any IEP that I am not going to get into the details of Liam’s right now other than to say that the public school Liam would be enrolled in for next year probably won’t be able to accommodate his medical needs making Liam’s safety an integral part in this educational plan. Because of this, the school department will most likely refer us to a private school that is more equipped for Liam’s medical needs and his special education needs. While we were warned that this may be the case, the writing is now on the wall that they are reluctant to take Liam on as a student. After seeing the reports written by our early intervention staff they even decided to bypass all initial testing required for IEP’s. They’re too scared to even set any goals for this first one. What a bunch of Wimps.

This morning we toured the school Liam will probably be referred to. I’ll mention it by name someday when Liam’s attendance there is official. It’s like the Disneyworld of schools for kids with special needs. Built in the last ten years it seems as if it were tailor made for Liam. Wide hallways between classrooms. standers, tumble forms, and other adaptive equipment lined up outside each door. Children of different abilities playing in groups together without notice of each others AFO’s, or feeding pumps, kid cart wheelchairs or hearing devices. Kids are able to be kids, not their diagnosis’s.

There are times when Karin and I need to find benefits to Liam’s challenges. Some times it’s the only way to make it through. I suppose i could be worrying about Liam’s IEP and how bad it must be that our school department sees him as too complex, but I know my kid. There ain’t any report or piece of paper in the world that will ever change that. I know what Liam is capable of and believe me it’s a whole lot more than anyone who has ever been paid to interact with him has ever given him credit for (and believe me, given his challenges, they give him credit for quite a bit) But that’s where the benefit lies. The control of the situation rest in our hands alone. When people don’t know what to expect from a child all that they can do is defer to the parents if they know what’s good for them.

On our way out of the school this morning I didn’t even have to say a word to the school department administrator who accompanied us on the tour.

“it’s really an amazing environment I know.” she said as she looked at me defeated. I could see why. After touring the public school that Liam should be attending, no one in their right mind would choose it over this palace. But she has pride in her own school and its program which I admire. Besides, when the school department makes the referral they’re the ones on the hook for tuition. I’m sure the powers that be and the money people would rather we stay in the public school. I’m also fairly certain that she’s not really supposed to encourage even touring this place.

“I know you have a great program for what you do, but it’s obvious that your school doesn’t have the equipment or staffing to accommodate Liam. You don’t even have a nurse available every day where this one has at least four on duty nurses all hours of the day. They are used to kids like Liam and he would fit in better here. In the public school he’d be the only kid in a wheelchair never mind the trach and vent. I am sorry but I don’t think we have to think too hard about where Liam should be sent.” I told her. Karin and. Hadn’t yet had time to discuss what we had seen but it was obvious to me that we were On the same page.

” I know.” she said. There was really nothing she could argue about that and we both knew it.

It’s still about ten months away but I’ll admit my head is still swimming in all of this education stuff. I guarantee This will not be the last you hear about the process – but at least for tonight I can say that we have found the place where Liam needs to be. My only job now is ensuring that it’s where he ends up.