Liam the Ninja and his new Belt. 

Editors note: Look I didn’t mean to take nearly 6 months off of regular blogging. It just kind of happened. But I’m back now. I mean it, but before I get to any of the cool new stuff I want to blog about I have to tell you this story first. Because it is an awesome story, and also because I should have posted it last October right when it happened. So let’s just move past the fact that I haven’t yet posted in 2015 mmmkay? thanks.

 

 

We almost didn’t make it to see Walter at all. (You’ve heard me talk about Walter in my speech here) The President was visiting Rhode Island for the first time in a generation that night, and with most of the exits off the highway between providence and the airport in Warwick manned by state troopers, and traffic at a near stand still for the evening, we were 25 minutes into the drive and still less than 5 miles away from our house, and close to 10 miles away from our destination. Karin floated the idea out there.

“I’ll just text Walter that we aren’t going to make it. This is nuts, it’s going to be over before we even make it there.” She said.

“No, Walter has been talking about this for months. We have to make it.” I said through gritted teeth and clenched jaw as my frustration at the interstate becoming a parking lot grew. “It obviously means so much to him, we have to make sure Liam makes it there.”

After ten years of teaching karate, Walter, Liam’s nurse for the past 4 years, had asked if we would bring Liam to the final class of his closing dojo. We were happy to be a part of it for Walter. Happy that it meant so much to Walter that Liam attend, but we had no idea why Walter wanted him to be there, and why he was so excited that we promised to be there. It wasn’t much of a choice really, after Walter had attended so many of our own family events, birthday parties, thanksgiving dinners, and milestones like first days of school, it was now Liam’s turn to be at something that meant so much to his big buddy Walter. Our full-time nurse, and part-time ninja.

“You made it!” Walter couldn’t have been more excited when he saw us wheel Liam into the room. About 25 students of all ages, in their Gis, kicking and punching in an impressive display for their family and friends around the room, while we tried to sneak in along the wall and take a place in the back so as not to distract from Walter’s night.

Walter wouldn’t have it though, and only a few minutes after we got settled the sensei addressed his students for the last time. A few minutes in to an already emotional speech Walter started telling the whole room about his patient and buddy Mr. Liam.

 

I don’t remember where Walter was going with the start of “it’s unfortunate … ” before the video cuts out but just know that it was incredibly sweet and inspiring words about Liam’s strength and determination. And then, in what was a total surprise to Karin and I, Walter presented Liam with his honorary Black Belt.  Embroidered with Liam The Lion Olson and a certificate in Japanese and everything.

Yes that’s right, ‘In recognition of his perserverance and indomitable spirit fighting the odds, and proving that nothing is impossible with hard work and the support of others’ (according to the translation side of the certificate) Karin and I are now the proud parents of a black belt, and we were blown away by the kidness. It was just Liam’s nurse Walter deciding to do something nice. Something he didn’t have to do at all. Something that still means the world to us.

For the remainder of the evening all of the students from children to adults in the class would make their way up to Liam to meet him. Every one of them bowing and calling him ‘sir’ as he was a black belt now, a title worthy of respect, while Karin and I, blown away by such a generous gesture and the incredible speech that Walter gave about Liam’s strength and determination, tried to figure out how we would ever be able to thank Walter and his entire family for such an evening.

An evening we almost didn’t even make it to.

I’m so glad that we did.

Thank you again Walter, Amy and the all the kids. You guys rock and Liam is a lucky kid to have you all in his life

 

 

Liam meets Santa

For almost ten years I’ve called Evelyn a friend but I suppose acquaintance would be more accurate. Walking past her desk every morning on my way to my own our talks would range from 15 second hellos to 20 minute complaint sessions about the Red Sox. She even took these photos, as we passed her desk on the day Liam was discharged from the NICU. (I wrote about that day and these photos here.)

For ten years I’ve called Evelynn a friend. After yesterday, and what she and her family did for Liam, I feel like I should call her family, and I don’t know if I’ll ever be able to thank her enough.

*****

“Hey Eric, have you taken Liam to get his picture taken with Santa yet this year ?” She asked, the beginning of last week, as I made my way into the office.

 

“Hmmm, No. Actually Liam hasn’t ever met Santa Claus yet, we just can’t wait in a germy line of kids at the mall or anything. Someday though, and he’s almost 6 years old now so soon I hope.” I explained, but Evelynn asks about Liam every day. She knows the deal.

 

“PERFECT!!” She shouted ” what are you doing next Saturday? You have to come to my sister’s house.” She picked up the phone in front of her and held a finger up to make sure I didn’t walk away. “Yeah, it’s me, what time on Saturday? Liam is going to come….. Liam!, that kid I was telling you about. His family is going to come on Saturday. Ok. I’ll let him know.” She hung up the phone and that was that. On my way into work on a monday morning I somehow had made plans to go to someone from work’s sister’s house for dinner on Saturday night. And I still wasn’t exactly sure why.

Evelynn had to explain.

If we came to her sister’s house on Saturday night, Liam would finally get to meet Santa.

******

Evelynn’s sister’s family had had her own children’s pictures taken with Santa and Mrs. Claus at a local restaurant from when they were infants until they were in college. With all the kids home for the holiday this year they had hoped to continue the tradition with a picture of their nearly adult children but the restaurant now closed leaving them without a place for Santa to see them this year. Until Evelynn’s sister had run into Mrs. Claus somewhere shopping. Mrs. Claus explained that Santa would be happy to stop by her house to take the picture, and a date was set. Plans were made.

Santa was coming, and by Evelynn’s thoughtfulness, and her entire family’s boundless generosity, it turned into one of the most magical evenings of my life.

We arrived a little early, and after getting Liam’s chair up the portable ramp we travel with, introductions were made. Introductions made so warm and comfortable that we were instantly set at an ease of familiarity among a group of strangers and one acquaintance. No one asked about Liam’s chair, or his syndrome, or his wheelchair, but each and every one of them pinched his cheeks, and said hello, and told him how handsome he was. A house filled with relatives and lifelong friends who instantly treated us as one of their own.

And when they all heard that Liam had never before met Santa Claus, the entire party seemed to change from a oppurtunity for them to relive old family traditions to a celebration of their part in starting a new one for us.

*****

And then Santa arrived and met Liam.

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Along with Mrs. Claus and their elf helper Tiny, Santa was able to stay for about 45 minutes. He sat, holding Liam’s hand and whispering in his ear for easily 35 of them. Concerned that we were monopolizing Santa’s time too much, many in the room with their own camera’s firing away and with joyful happy tears in their eyes waved away my concern telling us and Liam to take as much time as we wanted. They would ultimately get their own pictures taken but their patience and interest in being a part of Liam’s first exposure to Santa was truly a testament to the power of the Christmas Spirit as hokey and Charlie Brown Christmas as that may sound.

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Liam had slept for almost 22 hours that day. A rough end to the week with seizures induced a medicine change on friday night which wiped him right out for most of Saturday. Most but not all, for when St. Nick was whispering in his ear and holding his hand, Liam was wide-eyed and alert, engaged in communication and tugging for dear life on Santa’s beard with his free hand. Liam won’t tell me what they talked about. He won’t even tell me if Santa told him if he’s on the nice list or not. Whatever Santa had to say to Liam will always stay between them. I like that.

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After Santa had to leave and get back to his busy week-before-Christmas schedule, we stayed and we ate dinner and we got to know everyone a little better. When they found out that Liam’s birthday is the day after Christmas the whole group of our new friends sang Happy Birthday to him. We left happy and to invitations for future plans including a repeat holiday visit next year if possible, and as we made our way out the front door and down the ramp the first snow of the season here started sticking to the ground.

It was downright magical.

The magic of friendship, the magic of a kind and open-hearted family, and the magic of Liam’s positivity and love.

But, I think most of all, it was the magic of Santa.

 

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Storify of a Surgery.

It’s been a long week. Karin had surgery and was in the hospital for almost four days. To add to that stress her experience was beyond awful. While I didn’t blog or write during the stay I did tweet. Below is the link to a storify story I put together using the tweets I sent during her stay and the instagram photos I posted included in the timeline. Please have a look. It’s multiple pages and storify can take a little while to load but I’ve already written the details in these tweets and I don’t have the energy to figure out how to imbed the story into a wordpress post. If anyone does let me know and I’ll repost.

The First of Many

I’ve got frustrations with school posts left to post, and I’ve yet to recap our trip to the zoo to meet Anton, and over the next few days Liam will be transitioning from his trusty LTV-900 ventilator to a newer, lighter, quieter and more computer driven TRILOGY vent ( you may be surprised to learn that the quieter part of that is what is giving me anxiety as we have been living our lives to the rhythm of Liam’s breath for five years, I’m afraid of not hearing that, especially at night). In other words, I’ve got so much more to post but if you’ll endulge me, this one will be one last post about my trip to Philadelphia last week to speak at the Bayada Pediatrics 2014 directors forum.

This morning, they were kind enough to send a video of my speech that one of the forum participants took on his cell phone (Thanks Will!). After mentioning any of my past presentations here or on Twitter, many of you are kind enough to say that you wish you could have been there to see it, nd since this is exactly the type of thing I’ve been lucky enough to be asked to do that never would have happened without this blog I made sure to ask permission to post it here when I heard that someone had filmed it.

A few notes..

1. I doubt that I’ll ever post in such detail about any of my future speeches, but this one is different. My past events have been at the hospital where I work, and while they have all been well recieved, I was asked to do each of them by people who knew me before Liam was even born. This event was born solely from someone seeing me speak and wanting me to be a part of their own program. No one has ever flown my anywhere before. This was the event where I decided to stop waiting for people to call me a writer, a speaker, or an advocate but to start introducing myself as one. A big distinction, and I’m not looking back.

2. Sadly, the screens I was presenting in front of were just too big and awesome. Karin often jokes with me when I get stressed about writing these things that I could read probably the phone book while standing in front of huge pictures of Liam and the audience wouldn’t care since he’s so adorable, and she’s right. It’s a format I’ve used in all of my presentations. This 20 minute presentation includes almost 50 slides. My slides are not your typical powerpoint bullet points but are stand alone pictures of Liam projected as large as possible to help tell his story. Due to the size of the room and screens, the video catches a few of these images but is mostly just me talking. Hardly the exciting part of seeing me present.

3. I thought about trying to edit this video to a split screen to add the images alongside, or to lay the audio over the slideshow but ultimately I decided against it. First of all, the job is done. I spent my time writing, and travelling and giving the thing. To spend more time working on it now would take me away from the next thing. Second of all, if you want to see the whole show, you’ll just have to have your local children’s hospital or nursing company, or other group, ask me to come speak. While sharing, writing, speaking and advocating are all things I have done /would do/ and will do for free in some cases, I’m learning that what I can provide by way of our story does have value and if more of the support of my family comes from consulting and speaking than it does from being a foodservice manager I would be a fool not to pursue those avenues.

4. I really would like to take this time to thank Bayada Pediatrics (the pediatric arm of Bayada Home Health Care) for asking me to present to your first ever Directors Forum for office directors from all over the country. They thought of everything by way of accommodations and logistics so that the only part of the whole trip that I was responsible for was the content of my speech. Everyone that I met was supportive and helpful, and seemed genuinely excited for me to be there speaking to them. Everyone was so nice in fact, that the night before I worried that maybe having the middle ten minutes of my speech being a list of my complaints about home nursing, might be too negative for this crowd. Thankfully, it was exactly what the program organizers were hoping for, as they had explained at breakfast before the meeting, setting my mind at ease.

I was surprised to learn that many of the office directors have not previously been home nurses, (not sure why I assumed that though, I manage a team of supervisors responsible for nutrition and special diets but am by no means, a dietitian or nutritionist.)  These are the directors and managers from the office, and although I had to leave for the airport quickly after presenting, the participants I did talk with seemed to appreciate our story.

All in all I was impressed with the excitement and positivity I saw from the company charged with keeping my kid safe.

( It won’t get them off the hook the next time I have to call the office in anger though. )

4.It’s about twenty minutes long, but if you’ve got that to spare and you feel like listening to me complain about home nursing but then sing the praises of three nurses, here you go…

 

 

 

 

 

Proud.

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.

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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.

Because They’re Trying

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 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.

The Names of Things

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.

An Anteater.

Liam’s anteater.

And his name is Anton.

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*****

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)

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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.

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And after seeing the picture, when I tagged their handle, The good folks at the Roger Williams Park Zoo sent along a comment…

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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!

Anne

 

MIND. BLOWN.

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…

 

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

Photo by Bret Cortesi for the Roger Williams Park Zoo Website

 

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.

 

Somewhere in the Swamps of Jersey

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.

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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.

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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.

 

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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.

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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.