This morning I woke up in a fancy convention center hotel room about a half hour north of Philadelphia after flying there yesterday. A few hours later I gave a speech to a national meeting of more than a hundred pediatric nursing directors for the home nursing company that provides Liam’s nursing. The entire time I was there I was treated like some kind of celebrity. Initially afraid that my speech seemed to focus too much on the negative aspects of home nursing, my speech was very well received and gave me even more reassurance that Liam’s story, our story, has value.
It was pretty awesome.
Still wasn’t the most awesome part of the last 48 hours though.
That distinction goes to visiting Liam at school yesterday morning, a few hours before my flight out of town, to see him use his walker again for the first time in almost four months. Kiddo exceeded everyone’s expectations.
You have never seen true determination until you have witnessed Liam walking down a hallway.
Before we could even strap him into the walker those legs started pumping and he chased me and his mom down the hallway about 50 feet.
I’m pretty proud of my speech, and the fact that I was even asked to address a national meeting of nursing company professionals, but seeing Liam walk again so well after fearing a big regression over the summer is cooler than anything I could have done the past few days.
It’s not even close.
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.
Understanding that families do come in all shapes and sizes, who among us don’t remember hearing some version of it?
“You go to your room and you just wait until your father gets home and hears about this!”
Being told when Liam was only three weeks old that he’d never reach the developmental level of even a toddler, I never thought we’d have to use that phrase in this house. I knew then that he’d prove them wrong and boy has he, but discipline is one of those “universal” parenting skills that held little importance for us.
“There are no spoiled kids in intensive care units” people in the NICU and then the PICU say, and for us, once we brought Liam home, it became “there are no spoiled kids on ventilators.” And it worked, for a time. As long as he was breathing, Liam would not hear the word “No” or “now” or the phrase “because I said so” until he was almost four years old.
So it’s our own fault really. Don’t let that cute smile fool you. Liam can be just as much the brat that any other five-year old can be.
Truth be told, I couldn’t have been prouder to hear that Liam had been pulled from his classroom and into the hallway by his teacher to discuss why he was misbehaving in class. The kid who would never be able to communicate. He almost got a Yellow Card (and we all know you don’t want something like THAT on your pre-kindergarten permanent record). But of course it wasn’t in the fact that he was ignoring his teacher and not participating in his schoolwork but in the how he did just that.
Among Liam’s many super powers is his ability to avoid obligations (dr.’s appointments, physical therapy, occupational therapy, speech therapy, family functions) by sleeping or pretending to be asleep. He hasn’t realized yet that his heart rate monitor betrays his brilliant performances every time. He does it because it works. This time though, Liam decided to push boundaries by actively, alertly, and fully aware of his surroundings and behaviors, refused to make eye contact with his teacher and moving his head around in an effort to NOT look at the activity she was presenting to him. Non-compliant and proud of it, in every way that a non-verbal, low-muscle-toned five-year old brat can be.
Let me be clear, Liam loves his teacher. He perks up when she is around and the work that she has been able to do with him has been absolutely staggering. It’s in that love and respect that I think lead Liam to push those boundaries as far as he could. It’s because of her love and respect for him that I think she pulled him out of class to discipline him. Ventilator or no. seizure disorder or no. Global developmental delay or no. Liam is held to the same standards of effort and participation as all of her students and if she were to let him slide because he was cute. Or because he has special needs she is doing him no favors.
The concept of obligation is a tough one to teach. But it’s a lesson every one of us needs to learn, so when I got the full report from Liam’s mom on my return from work at the end of the day, Liam and I had a nice long talk. A talk about respecting the teachers and the adults in his life. About work, about effort and participation. We talked about what he did wrong, and what he needed to start doing from now on. I didn’t have to work to hard to figure out what to say either. Most of my own “wait until your father comes home” moments came on report card day, where I would get a lecture about work, about effort, and about participation.
The next day I was home from work and was able to go with Karin to pick him up from school. His teacher came directly over to us as he and his classmates exited the building. ” Well thank you for whatever you said to him last night. He had an EXCELLENT day today! He worked so hard with me when I asked him to.” she told us.
I guess he learned his lesson. Must have been that whole afternoon spent with the guilt and the anticipation of a punishment of some kind.
Just waiting for his dad to come home.
We didn’t even tell him. Got him dressed and packed into his wheelchair. We even left the house at the same time that he does every day for school, but Liam didn’t go to school yesterday. I had the day off of work, and the weather was right.
Yesterday, we all went to the zoo.
We’ve of course been to the zoo before but we were excited to go during school hours in the hopes that the zoo would be fairly quiet. It was, but not nearly as empty as we expected. Still, we were able to enjoy every exhibit at our own pace and didn’t have to battle through other groups to get Liam right up close, with only a minimal amount of the uncomfortable stares (sadly enough, they’re usually from the other parents more than the children).
There was one animal though, that I was more excited to show Liam up close and personal for the first time than any other, and I knew that no matter the feeding schedule or the weather, this animal would be available for Liam to meet.
If you grew up in Rhode Island, chances are there is a picture somewhere in your parent’s old photo albums of you proudly astride the dog in front of the gift shop at the Roger Williams Park Zoo. I know for a fact that there are pictures of me on this thing along with my siblings and cousins. When we decided on letting Liam play hookie to head to the zoo getting to take this photograph was the first thing on my mind.
Having the time to unhook Liam’s ventilator, feeding pump and oximeter, safely lift him onto the dog’s back and then have the picture taken? Well, that right there was more a more meaningful experience in Liam’s life than one more afternoon in a classroom could possibly bring, and I don’t care what his report card says about it.
Like most parents of 5-year-old children we get a lot of arts and crafts projects sent home in Liam’s backpack. Most of them obviously the result of “hand over hand” writing and crafting. That’s ok with us. We came to grips early in Liam’s life that he wasn’t going to be making us any crafts or writing us any letters.
We picked Liam up from school about fifteen minutes early on friday so that we could take him to a doctor’s appointment. Liam’s nurse barely had him out of the doorway when he started he shouting at me. “He did such great work today! He worked so hard! Wait until I show you what he did in class today!” Liam’s nurse is not the most excitable gentleman you’re likely to meet and so the enthusiasm was evidence in and of itself of the importance of what we are about to see.
I can’t tell you how much class work we end up finding ourselves when going through Liam’s backpack long after his nurse has gone home from the day. Not only did he want to show us this work, he started showing Karin and I this page in the van, before we even had the tie-downs on his wheelchair secure.
“It started with this worksheet.” He told Karin and I while we secured Liam’s wheelchair. “He was doing some hand over hand on numbers until he did this number one all by himself!”
“That’s when [Liam’s teacher] got really excited and ran to get some more paper. She wanted to see how far she could push him and the only support she gave was to keep her hand at his elbow so his arm would stay on the table and not fall off.” He was speaking faster than usual now “The marker stayed in his hand on his own and he moved his wrist and hand on his own.” That’s when he pulled it out of the bag to show us.
From left to right. 1…2…3…4…5.
You might not see it. and you know what, I’ll admit that the 4 might be a bit of a stretch but it looks pretty damn good to me.
It’s things like this that Karin and I wish we could show to every doctor and resident who saw fit to tell us everything that Liam wouldn’t do. Everything that he’d never accomplish. Everything that’d be impossible for him to learn.
Because as a close friend who also is a parent of a child with some special needs often tells us — Everything is possible — the impossible just takes longer.
Liam and his best buddy W, the nurse I mention above. The photos are selfies that W has taken and shared with us. It would be a HIPAA violation for him to share them in any other way. But not if I do.
Liam has never crawled across the room to check out something shiny that caught his eye.
He’s never darted away down the grocery aisle for whatever the reason is that children dart away down the grocery aisle. To Play, or investigate, to explore.
In that crawl or the sudden sprint by a child lies a level of communication that we have never gotten to see from Liam. To see where he wants to go. To learn what catches his eye. To discover where his interests lie.
Last year the timeline was three to four years. Over the summer, after improvements in making choices and showing an awareness of his surroundings that timeline was adjusted.
“He’s ready. At least ready to try it. Let’s see where he takes it.” I was shocked when his PT said it after a particularly good session with his speech therapist and her assortment of switches. “Let’s get him one to practice with in the fall and see.” All of the sudden three years turned into three months and the possibility of a whole new world. A new freedom. A new way to explore. A new way to show us what he wants.
Look out world. Last week Liam got his Learner’s Permit and a smoking hot set of wheels. Just a loaner from the wheelchair company for now, and he only uses at school while we get seat and support measurements to learn what will work best for Liam when the time comes to get him his own model. I’m thinking flames on the side right?
Liam also went to his first professional hockey game last week when we took him to see the Providence Bruins game. Liam absolutely loved it, and someday when he’s using those switches to drive the Zamboni at the Providence Bruins games we’ll look back at this footage as the start of it all.
On Twitter last night I made fun of myself a bit for being too lazy to post here. I have been writing, I just haven’t been happy enough with anything that I felt I could post it here. With today being my day off I had high hopes that I would get some writing done today and was confident that I would polish something enough to post. I suppose that there’s a chance I still might.
But instead, and only because how could I NOT post this, I have to share a photo.
Liam has been reluctant to work in his walker lately. In fact on the way home from school today Karin and I realized that Liam hasn’t had a good day in his walker since before the month-long hospital stay last fall. Don’t get me wrong, he’s worked hard all school year but he had so much physical therapy to catch up on that he simply didn’t have the strength.
There’s nothing better than having a day off of work on any of Liam’s school days. Then I get to pick him up and participate in his therapies. He may have been holding his Mom’s hand in the picture above, but he was also walking towards something today.