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.
The morning after the events of my last post Karin and I still didn’t know what was going with Liam’s first day of school and whether or not he would be afforded the orientation process that all the other incoming kindergartners were having. I had been hoping that after hearing the messages I had left the day before I would have recieved a call early in the morning but when I didn’t hear anything by 9am I knew that wouldn’t be the case. So Karin and I went to the school to park ourselves in front of the principal’s office until we could speak with her about our concerns. The school pre-k program social worker (poor thing) didn’t have any idea what she was in for when she walked by and waved hello.
“Can we talk somewhere, right now?” I asked.
Anyone who knows Karin and I knows that we are not confrontational people, but when it comes to the full throated advocacy for our son and his needs we will be as confrontational as we need to be, and we have a lot of practice. The medical field has trained us well with, daily rounds in the intensive care unit, family meetings, and the lifelong coordination of multiple specialists Karin and I have more practice than most at setting expectations with the professionals in charge of Liam’s care. We have to.
Liam’s life depends on it.
The meeting was tense. Tension brought on entirely by my anger at the situation and the fact that I am a big, loud oaf when I’m angry. There of course was no violence or inappropriate language, but I could tell by the look on her face and by the taps on my leg by my wife that I may have gotten louder and louder as I listed my grievances. I really didn’t want to start Liam’s school career being the angry dad but it was necessary. After Karin and I laid out our case for why changing Liam’s school schedule at the very last possible moment, and denying him the chance at the orientation process offered to the other incoming kindergartners was unreasonable, unfair and quite possibly illegal, the school social worker brought the principal over immediately and helped to facilitate a quick meeting. The principal, while understandably busy given that it was the first day of school met with us quickly. It was a shorter meeting than I had expected but that is to the principal’s credit. Understanding that we were angry even though she didn’t yet understand why, she accepted that a series of mistakes were made on their end and instead focused on what she could do to make it right.
Liam’s orientation was scheduled for 10:00 am the following day.
A few times a month Karin or myself (mostly Karin) will discuss treatment options with Liam’s neurologist over the phone. Explaining symptoms, relaying changes in medicine doses, what to watch for to see if they’re working, and what to do if they aren’t. Just as often, Karin or myself (mostly Karin) will speak to our pulmonogist over the phone to discuss breath volumes, peak inspiratory pressures, and overnight oxygen settings. Misunderstandings and mis-communications over the phone are luxuries that the Olson family cannot afford. We take notes, we ask questions, we make sure we understand what is expected of us and of Liam. It is a relationship that we have built by open and honest communication. A relationship that we need to have with Liam’s educators as well.
Friday morning Liam was able to meet with his teacher, the principal, two of his therapists, and the superintendent of schools for a tour. He was able to see the lift that the school department is still working to get operational, but also to check out the alternate route that he’ll have to use in the meantime. It isn’t ideal but they’re trying, I think they know now that I won’t let them forget about it. The orientation, from what I hear since I was at work, I wish I could have been there, was great. Liam was able to meet the first and second graders that will be in his class with him this year. The principal and his teacher explicitly discussed with Karin what the most effective means of communicating with each of them will be moving forward and they even thought of some things that will help Liam’s nurse do his job easier at the school.
They really are trying.
I don’t believe for a second that someone intentionally or maliciously decided to deny something from my child or his classmates. It is, after all, reasonable to change Liam’s first day since there are first and second graders in his classroom, and that way they can begin their daily routine a week earlier. But the time to make that decision was three months ago so that those same kids can have their orientation process and the expectation can be communicated in plenty of time. Three months ago when they could think through all of the issues it may or may not create for the portion of the student population that even the slightest change might effect in ways that people not living this life may not realize. Three months ago, NOT the day before. No one meant for this to be unfair but it was, and it’s my job to point that out to them. And I don’t feel bad for pointing that out to all of you as well while it was happening.
I had no problem writing about all the wonderful parts of Liam’s interactions with the school system in our town thus far. His first steps, his making friends, his wonderful penmanship, and even the first time he got in trouble.
It’s why I also had no problem writing about their mistakes when they let us down.
72 hours ago I had little hope for a positive and exciting first day of school celebration, but the actions of the school in the days following, showing us that they really are trying to supply everything they can for his education, as complicated as that is, have turned me back around.
We’re excited about Wednesday again, and while I don’t think I have anything to say I’m sorry for, I do have to say thank you.
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.
Liam’s agency and dignity being among our top priorities as parents, it’s important to us that , whenever possible, Liam get to choose what is done to/for him. Unable to speak, or point, or grasp, Liam communicates his wants with eye gaze and head nods. He picks out his outfits every day (between choices given him by his stylist.) Sometimes he decides in an instant. Sometimes he needs a little while to think about it, and sometimes he just can’t be bothered with the demands of making his own decision. He’s five. I’m gonna just assume that all that is universal.
The thing is, when Liam is really alert and engaged in the decision-making process, his preferences are apparent. His attitudes obvious, even strangers would have no problem recognizing his meanings. So it was the first friday night in June during the Dream Night festivities at the Roger Williams Park Zoo. His wheelchair parked in the gift shop, in a corner to stay out of traffic, Karin and I would each approach with pairs of stuffed animals. A bracket style gladiator tournament to find the winning souvenir with Liam’s head turns and eye gaze applying the thumbs-up or down decision on just who would come home with us that night.
Elephant vs. Zebra., Monkey vs Buffalo, on and on it went until the winners were then put in again. Decision after decision until we were left with a winner.
And his name is Anton.
There are an awful lot of stuffed animals in our house, and they all have names. Karin is the namer of things, and she’s incredibly good at what she does. We have lions named Levon, Lemar, Levi and Lenny (and Frodo, and Ribbons, and Roar-y). Penguins named Gordon, Gordon Jr. and Freddy. A whale named Whale-n Smithers, and even a watering can shaped like a pig and whose name is Rusty. Everything has a name around here. We have a dragon named Douglas, and a stuffed Dinosaur from a hospital gift shop named Enterobacter-saurus after the bacteria in his blood stream from his burst appendix that kept Liam in that damned hospital.
But right from the start Anton seemed different. Liam seemed a bit more attached to the stuffed friend he had to tell his parents he wanted three times before we believed him. He was one of only two stuffed animals that made the trip down to Jersey with us last month. (The other one also in the picture below, LeMar the Lion, has been in Liam’s bed with him since he was ten days old. A gift from his Uncle Phil and Auntie Jannah)
And before long it would become apparent to us that Liam had decided that Anton was his favorite friend to sleep with. Months now, it’s been Anton, through adventures with flooded diapers and trips in the washing machine and dryer. It’s Anton. So much so in fact that eventually I just had to post a picture to Instagram about it.
And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…
See it? That alone, I thought was a pretty cool thing. Cool because it’s been fun to interact with the zoo on twitter and instagram every time we go there, but also cool because they’re right. Anton is a good name for an anteater.
As cool as I thought all that was though, this morning things got a whole lot cooler. This morning I got an email from the good folks at the Roger Williams Park Zoo. An email with the subject line Anton the Anteater.
Here, I’ll let them tell you, Here’s the text of the email I got.
Hi Eric –
Firstly, I would like to let you know that here at the Zoo we read your blog and it makes us so proud to be able to offer Dream Night, as well as being a space that you and your family love to come to. I noticed on Instagram that you had recently visited the Zoo, and your son Liam had picked out an anteater toy, named Anton. Well, it is a happy coincidence that we recently had an anteater birth, a little boy!
So, in recognition of the support you’ve given to the Zoo over the years, we would like to name our newest addition Anton as well, and invite your family (original Anton included!) to come visit the Zoo as our guests for the day.
Let us know when you’d like to schedule your visit, and thank you for your continued support!
There are so many reasons why this is probably the coolest thing that has happened since I’ve started this blog. I’ll only get to a few …
First: I was already almost dancing around our house this morning when I read this since it was just plain awesome to hear that an animal at the local zoo was being named indirectly by us, and by extension Liam. The Roger Williams Park Zoo has always been such an important place for us as a family (as new readers can read about here, here and also here) but then Karin started sending me more information that she was reading about our new friend Anton from the Zoo website and I got even more excited since it seems Anton himself is kind of a big deal. (from the linked article)
Zoo Executive Director Dr. Jeremy Goodman commented that the birth of a male giant anteater is a significant occurrence in captive populations, because there are very few males in the Association of Zoos and Aquariums (AZA) Species Survival Program.
Corndog (Anton’s Mom) was selected to come to Roger Williams Park Zoo to be bred with Johei based on recommendations made by the AZA. Giant anteaters, native to grassland and lowland tropical forests in Central and South America, are listed as “vulnerable” by the IUCN due to loss of habitat and hunting. It is estimated that only 5,000 animals remain in the wild.
Besides, How can you not fall in love with something like this…
Second: As goofy and silly as Karin and I can get with the naming thing. Names mean things. As Anton the anteater makes his way in this world and is transferred to another zoo somewhere in the hopes that he will help the population of his species, he will continue to be called Anton. Liam will always have that indirect connection to him. I realize that this may seem like I’m greatly overstating things but like any parent, I often think about the impact that my son will have on this world. The waves of influence that Liam and his unique position and perspective will create. The fact that my wife’s love of alliteration and of naming things (ESPECIALLY for her son) have become one of those waves, and that it will continue to go on rippling, fills me with happiness and pride.
Names have power. In the Patrick Rothfuss novel The Name of the Wind (which I highly recommend) he writes…
Words are pale shadows of forgotten names. As names have power, words have power. Words can light fires in the minds of men. Words can wring tears from the hardest hearts. There are seven words that will make a woman love you. There are ten words that will break a strong man’s will. But a word is nothing but a painting of a fire. A name is the fire itself.
Yeah, in the novel he’s referring to a type of magic. I still think it fits and the line quickly jumped into my head this morning as I thought about all of this, because no matter the meaning of the name Anton, the story behind him coming to it will always mean something to me. To my family.
To my boy.
Third: I’m already living vicariously through him. I assume the AZA will probably end up transferring him somewhere when he’s old enough to breed. Maybe we can visit him. San Diego? The Bronx? Maybe someday we’ll decide to plan a whole vacation to wherever little Anton ends up having kids of his own. We’re zoo people. Why not take a vacation to see other zoos?
And finally, just because it’s one more story that we get to tell about how lucky we are to be the parents of this wonderful boy of ours. Things like this would obviously never happen without him. His influence and the energy that he puts into the world has continued to come back to us in surprising and exciting ways. This is a story that I will forever enjoy telling.
The time my son and my wife got to name the new giant anteater at our local zoo. How cools is that?
And it’s all in a name
A name like Anton.
Ok, not the swamps, instead the rolling hills of northwest New Jersey but if you think I’m not going to quote The Boss when talking about our trip to Jersey well then you just don’t know me at all.
Yes the Olson’s packed it all up and headed south for adventure. When I say packed IT ALL up, I mean it. It makes little difference if we are going camping or visiting family in their home, the packing remains the same. 2 days or 2 weeks and there’s little difference to the list. A CVS, across the street from a Walgreens next to a Target a short walk from where we’re staying? Ha! find me syringes, feeding tube bags, ventilator circuits, or nebulizer parts on any of their shelves and I’ll eat my hat. No, the whole kit and caboodle needs to make the trip when we travel.
Actually, make that the whole kit and caboodle . . . times two. Because ventilators malfunction. Ventilator batteries lose their juice. Electrical chords and plastic oxygen tubing can all fail. At any time. We have to be ready.
Ready for anything. Twice over.
At all times.
And so we are.
The trip was great! We visited with family we don’t see often enough, ate good food, and had a relaxing few days away. We even took Liam to another zoo.
For his part, Liam was wonderful. He endured the ride as well as could be expected considering it was RT 95 through Connecticut. He was well-behaved, turned on the charm for his grandparents, and aside from one late night with an increased heart rate that worried us until we realized it was just gas, stayed spectacularly within his baseline sats and numbers. In a new environment in a mostly climate controlled (dry) facility and only recently making a full transition off of supplemental oxygen these are not small details. I’ll be the first to admit that I get a bit nervous travelling and being away from my bubble. It makes me so proud to see how well Liam travels.
I hope he keeps it up. Because along with our wonderful trip out-of-town for a few days last week, at the end of my vacation from the day job I was approached by the nursing company that supplies Liam’s home nursing care. It seems they had representatives at the conference where I spoke last month and would like to send us all to Pennsylvania so that I can speak to their national meeting of all of their pediatric nursing directors (they have offices nationwide). Details still need to be worked out so I don’t want to say too much, but they want me to speak and I really want them to hear me, so it looks like our trip to New Jersey was just a dry run for a greater adventure.
We’ll be ready.
Ready for anything.
I could (and will) tell you awesome stories about Liam about to start trialing time unattached from his ventilator, or how amazing his progress as we cruised towards the end of his school year. I could (and will) post the essays I’ve started on my problems with the IEP process or my frustrations with what is commonly called the “dadblogging community”. I could (and will) regale you with the tale of finding a hidden gem of a local hiking path that is wheelchair accessible.
Although I could also (but won’t) tell you awful stories of two months of my erratic and inconvenient work schedule wreaking havoc on the time I’ve had to spend with my wife and son. I could (but won’t) post an essay about the grind of 24/7 care especially when the once a week night nurse relief unfortunately had to miss her shift due to a family emergency, leaving a 14 day stretch of less than 4 hours of sleep a night for both Karin and I. I could (and still might) regale you with the tale of the 14 hour hiccup attack and the car inconveniences and all the other things that come up and take away our ability to get the rest we need. The rest I apparently need to have the energy to blog at the end of the night (early morning) while I’m up watching Liam.
I really need to just start blogging in the morning.
In the meantime I’ll just post a picture and a wave hello. Tomorrow my work schedule goes back to normal. Tomorrow our usual daytime nurse (who has been caring for Liam for the past four years) comes back after 6 weeks on a medical leave. On Friday I’ll start a ten day vacation from the day job.
I’ll be around soon. For now here’s a picture, and a wave hello.
We’re still here. Thanks for coming back.