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.
Liam had a HUGE POOP at school today. I just finished cleaning his chair. — K
I’m thinking that somewhere there may be families out there who outgrow texting each other about poop. We’ll never be one of them. When I got the text I chuckled and moved on to the next thing on my plate at work that afternoon but something started gnawing at me. Something I hadn’t thought of before.
A few posts ago I talked about how I had never thought much about Liam making friends. I guess I never thought much about the flipside of that either. Maybe in a general sense of being accepted for who he is but the specifics of social situations that Liam would find himself continue to be hard to imagine.
So I called Karin. I wasn’t going to get much more work done if I didn’t. “Do you think the other kids make fun of him when this happens? I mean, what do the other kids say?” I have always loved the fact that Liam is in an integrated classroom along with children of all needs, from “typical”, “normal” kids all the way to, ..well, Liam, and many shades between. At this age especially, it benefits them all. But what are the other kids going to say about the kid who poops in class? This isn’t the first time it’s happened for sure, but the image of Karin having to clean Liam’s wheelchair when he got home jarred loose a fear that it wasn’t the wheelchair, the vent, or even the seizures that would isolate Liam from his classmates, but things like this.
Karin assured me that everyone at school loves Liam and it’s happened before so I shouldn’t worry about it at all. She directed the conversation to how good the rest of his day was and I went back to work. Half an hour later Karin called me back.
“I was thinking about what you said and so I asked W (Liam’s nurse) about it. Liam and his friend A were holding hands and working on a craft the whole time “it” was happening and even he had no idea why W excused Liam to the nurses station to change him. I don’t think anyone other than W even knew what happened.” She said. I guess my asking got Karin thinking about it too. I don’t think she was ever worried about it like I was, but enough of a thought that she asked W for more details.
“Besides,” she said “according to W he was only one of the three that pooped in class today.”
9 kids varying from typical to medically complex and 3 of them pooped in class just today?! What the hell am I worrying about?
My kid is fitting right in.
I never really thought that Liam would have any friends.
Aside from the impact that Liam has on all of our own friends and relatives how does a kid who can’t walk or talk and is not only confined to a wheelchair but also attached to a machine that breathes for him going to really make any friendships with the kids his own age without one of his parents there to help communicate for him?
Shame on me. Once again I foolishly underestimated my own son.
I still have no idea what the answer is but what I do know now is that he can. I know this because of the pictures. Oh, the wonderful pictures that Liam comes home from school with. Pictures from his teacher and from his nurse. Pictures that I wish I could show you but won’t since they contain other children in Liam’s class. Not just his classmates.
They’re Liam’s friends.
I can only tell you the tales we hear. Tales of his buddy “A” who wanted so badly to “ride Horses” with Liam that he stuffed Liam’s wheelchair with the toy horses from the classroom’s dress-up section, saving one for himself and then making Liam’s nurse push him around the class while they held hands.
Tales of friends who high-five Liam every morning then breathe on their own hands before holding them to Liam’s peep valve showing their understanding of where Liam’s own breaths come from. Tales told through pictures now hanging on my fridge of the three-way telephone game with two friends wearing novelty sunglasses because Liam gets to wear glasses all day and they want to wear some too.
If you read this blog a year ago you may remember my anxiety about Liam heading off to school. I had a hard time trying to see how Liam would fit into an environment of kids of all abilities. My biggest fear was that Liam would be left uninvolved in group activities off in a corner somewhere. It makes me so happy to report how incredibly wrong I was.
I underestimated the level of competence and kindness of the therapists and teachers that we have grown to admire so much. I underestimated the sense of fearlessness, curiosity, and compassion of children who are too young to be scared of Liam because of his special needs. But worst of all of my needless worry was that I underestimated the personality, energy, and love that Liam communicates without words.
I was wrong. Wrong on all counts. Liam has learned so much at school this past year. He’s taken his first steps, learned to make choices between different toys and even how to ride a bike. All of that is more than I ever thought would be possible. But those are things that Karin and I have been bracing ourselves to accept since we were told he wouldn’t do any of them when he was only three weeks old. While focusing on improvement in or acceptance of Liam’s developmental milestones I didn’t expect to worry about Liam’s social skills until we started leaving Liam at school three months ago.
I read enough special needs blogs to know that we are very lucky and school won’t always be this easy. That the stress of writing quantifiable goals and I.E.P.s will continue to increase and get more complicated. That the ever-changing budgetary needs of school districts will affect the availability of services that Liam will need. When those things do happen I hope that I can look back at these days and remember the true value of sending Liam to school. That kids need to be around other kids and Liam is no different in that. I didn’t think that I would ever see Liam put one foot in front of the other and walk forward until he did it.
Liam has friends now.
I’ve never been so proud to be so wrong.
Among the benefits to having a child with complex special needs is the fact that he gets to have all sorts of “firsts”. Since he misses out on many of the “normal” firsts, the ones that Liam does get to celebrate, we celebrate to the fullest, and as many times as we can.
Yes, we have decided that for some occasions Liam gets to have more than one “first”. He deserves them and so do we. Celebrating so many of the little things is another one of those benefits.
Liam’s first day of school was Monday! It’s his third, I think.
The first was for therapies. In and out in about an hour. Just Liam and his therapists, his nurse and his mom. It happened in a school so we count it as school but Liam hadn’t yet seen an actual classroom.
Months later Liam would spend about a half hour after therapy with the other three-year olds in classroom time with the same teacher he would have this year, but he was really more of a class visitor than a full student then.
This year, because of his summertime health issues and the virus he picked up shortly after coming home, we put off sending Liam to his first day of full participation school a few weeks. Therapies alone for a couple of weeks until monday morning when for the first time Karin and I dropped Liam off at school and then actually had to leave him there for half the day.
It was not a good feeling. I’ll be honest enough to say that Karin and I bickered and argued the entire time. We’ve left Liam alone with his nurse in our home for a few hours every now and then but we have never dropped him off somewhere only to return without him to a quiet and seemingly empty house. A house that until we get used to this fails to feel like a home without the ever-present breathing sounds of a ventilator.
Liam was fine of course. He is accompanied to school with his home care nurse and his therapists there know him well enough now. Like I said he already knew his teacher pictured above greeting Liam for the first time on Monday, so it wasn’t like we just left him with a bunch of strangers for the morning but without any previous experience in leaving Liam, Karin and I are simply not ready for this feeling.
We survived, and this morning things got just a little bit easier. Easier because today was new wheelchair day! Something else to celebrate. Instead of picking him up around 12:30 Karin and I were able to take Liam out of class an hour early to have the DME equipment tech fit him into his new wheels. She met us at the school and with the help of a bunch of specialized tools and his PT and OT he is truly riding in comfort now.
Next week Liam will not be pulled out early. He will stay for both of his half day sessions. He will, I’m sure, struggle to be awake and alert enough for school that early in the morning. The Olson men are not morning people. Never have been and while we are trying to adjust his bedtime schedule to promote a more awake morning time Liam he is resisting the change with all of his might. On that first day of school the sweet little note from his teacher hilariously read that once Liam woke up an hour after school had started, he was engaged and active from there on out.
Only three and a half and already getting notes sent home from his teacher for sleeping in class? That’s my boy! And another first to celebrate.
Editor’s Note: The top three pictures were all taken by Karin. She is by far, the better cell-phone photographer.
I have to admit I just don’t have the mojo tonight. I’ve been struggling to write a post about how much Liam’s school, and the therapists that he works with there, mean to us but the words just don’t seem to be fitting right. I’ve written plenty of words for sure, but they just aren’t playing well with each other at all. So instead of forcing a bunch of boring writing at you I’ll just show you by pointing you toward this, Liam, at three years old and with the help of those therapists, taking his first steps, and then this, Liam, with the aid of a walker taking his first ever walk with his mom. I’m pretty sure that those two links should give you just a peek into how awesome school has been for Liam. They show it much better than I could write it that’s for sure.
Yes today was Liam’s first day of school. It should have been last week but only a few days removed from a nasty virus that came dangerously close to bringing us back to the hospital again Karin and I were unwilling to let him venture into that den of germs for a little while longer. He could have started on monday of this week too but an appointment with his hematologists regarding the blood thinners from my last post was much more important as well and so a week after everyone else’s did, Liam’s summer vacation came to a close.
Since he missed most of ESY this year while attending Septic Shock Summer Camp (I don’t recommend it, not much fun at all) we were expecting a serious summer regression of the progress that Liam had made last year. We were pleasantly surprised though when he stayed awake and engaged for the entire therapy session. Just look at the focus on that adorable face up there. He certainly works harder at school than I ever did.
Tuckered out after all this work Liam was of course rewarded with a nap and some snuggles from his mom. Not too shabby if you ask me.
I wish I had something more poignant to say about school but like I said I just don’t have the mojo tonight. It’s 3am as I type this and since Liam has been sleeping peacefully all night, I’m going to try to get a little reading in before Karin and I switch places at 4. Happy back to school time everybody. I’ll talk to you all again soon.
When Liam was born I had a private website through the hospital’s Carepage program to send out posts to approved subscribers (family and friends). It was a wonderful way to send out information without having to make a whole bunch of phone calls and was of course the genesis of what would eventually become PressureSupport.com. I wrote nearly every day about the details of almost every day for a while but eventually the day-to-day waiting game that is the NICU became a slow grind and news would come out more slowly over weeks. We’d get emails and phone calls from family and friends who were sure that the reason I wasn’t posting was because something bad must have happened. I know they all were just showing how much they cared and we of course appreciated whenever someone would want to check on us but really I just got tired of writing “waiting for Liam to put on more weight” over and over and over again.
It was when I realized that I should be careful about making this the family’s only outlet for relaying Liam related information. The stress and responsibility of keeping everyone up to date with every little thing wasn’t a precedent I was confident I could keep up long-term and so I stopped using blogging to describe the day-to-day details of Liam’s medical needs or problems.
Even though I actually post more and go into greater detail during hospital stays and times of great stress, this blog is not a blow-by-blow account of every little medical thing that Liam encounters but more of an episodic narrative about the attitude and hopeful positivity of Liam’s, and by extension our family’s, life overall.
But whether I liked that aspect of it or not, just like that Carepage, this is a great way to get information out to family and friends all over the country and I should try to find a happy medium in using in that way with more updates on the goings on here in The Olsonshire.
I’ve been asked by enough acquaintances and co-workers the same bunch of questions lately and I figured that many of you, my family and friends, might be wondering some of these same things, so I put together a list and this way I won’t have to make a whole bunch of phone calls.
It’s like a FAQ for Liam’s life right now.
How’s the walking going?
Why it’s going freaking awesome thank you very much. We are still trying three different walkers to see what works best for Liam but we are having a blast watching him put in so much effort. He is truly an inspiration to all that see how much effort and determination he puts into everything we ask him to do. Unfortunately walkers are not cheap and even once we find one we like it probably be purchased by the school and kept there for him (and any future students with muscle tone issues like Liam’s) to use during his school day. It’s not an ideal situation of course, we would love to have a walker for him at home, but walkers don’t grow on trees.
What about school? Almost finished?
School is great but yesterday was Liam’s last day. Luckily our school district has an extended school year summer program so Liam will go back to school in a few weeks so we can try to keep up with all of the progress we’ve made in his physical therapy. Karin also got Liam enrolled in some supplemental therapies at an outpatient facility to stave off any regression.
How about the Van?
Oh the Van is more incredible than I ever could have imagined. How else would Karin have been able to bring Liam to surprise me at work on Father’s Day? We are still getting acclimated to the true freedom, safety and convenience that the van allows and so I still get excited and happy getting Liam in and out of it.
Speaking of the Van, now that you have it I guess there’s no more ‘Liam the Lion Fund’
Ah yes, money. The topic that makes me so uneasy talking about that I bury it in a post of fake questions and adorable photos. Well the ‘Liam the Lion Fund’ is not going anywhere. Not by a long shot. First of all, and without getting into too much detail, the van isn’t completely paid for yet. We did have to finance a chunk of it but we couldn’t wait any longer. It had to be bought now. We’ll continue to raise funds to pay down the remainder left outstanding. Secondly there will always be further equipment that Liam will need that will not be paid for by insurance like the walker we already spoke of but also a bed (adjustable like a hospital bed) and whatever other stuff I don’t even know that we’ll need yet. The hallways and bathroom of our home aren’t nearly wide enough for a wheelchair or for safely bathing an ever-growing boy so some renovations made to accommodate his medical needs will be inevitable. All of that says nothing of the possibility that a law gets overturned and my insurance company says “Hey Olson’s, you know that lifetime cap of benefits that you had already exceeded before he even came home that we imposed but then rescinded when the law forced us to? Yeah we’re able to bring those back now so good luck paying out-of-pocket for those meds, nursing help, supplies, and hospital visits.”
And after any benefits to Liam and the costs incurred by his medical needs, the long-term goal of the Liam the Lion Fund has always been to continually raise funds to donate to our local children’s hospital and any other special needs charities that we decide on. That’s the goal at least, but we are a long way from there.
There will still be Liam the Lion Fund bracelets. There will still be pasta dinners and art auctions, hopefully sometime soon there will be a website and other opportunities so stay tuned.
Thank you to all of the friends and family who have donated. We wouldn’t have made it this far without you.
Ok, well none of us like talking about money. How about all these adorable pictures! You have been taking such wonderful photos of that kid!
Well thank you and yes, yes they are wonderful photos but I didn’t take a single one of them. Karin has been killing it with the cell phone camera lately and these are the kind of thing that I get sent to me at work every day to brighten my day. Well except for this nighttime pic which I was present for when she took it. It’s a picture of true peace and relaxation. That glowworm (it’s actually an off-brand glo-seahorse) has been with Liam in his bed since the NICU but we haven’t turned it on in a couple of years. He actually seemed like he remembered it.
So there you go. School has ended, Liam loves using a walker, the van is still awesome though as of yet remains unnamed, and we continue to need money (don’t we all). Now you are all caught up. I’ll try to do this more often.
I’ll talk to you soon.