Since I haven’t posted in a long time, I wanted to give a quick update of our summer with some pictures. I thought I’d have tons of time to blog and read and get important things done this summer, but when you have two little ones with swim lessons and ballet class and medical procedures, etc., time really flies! We are having a blast, though, and can’t believe I’ll be back at work in less than a month 😦 But first, we get to spend some quality family time at the beach coming up! Maybe I’ll post again after that with some beach pics 😉
This past week has been difficult for me. I teach 8th grade English at a great junior high, and we’re currently reading Daniel Keyes’ short story, “Flowers for Algernon.” It’s a wonderful and heartbreaking fictional story of a mentally challenged man who undergoes brain surgery in order to increase his intelligence. When I was reading it last summer and mentally preparing to teach it later on, I thought, this is going to be great! What a great way to teach kids to empathize with people that are different from they are, and to not poke fun at disabilities.
Boy, was I in for a rude awakening.
You see, even though MOST of my students seem to be taking this story to heart and practicing empathy and feeling compassion for the main character of Charlie, it’s the handful of other students that like to make it a joke that tend to stick with me. The story is written in journal form, and since Charlie starts out with an IQ of 68, he doesn’t write very well at all. He doesn’t comprehend when people are making him the butt of every joke. He doesn’t “get it” when it comes to anything that goes beyond the surface level of understanding, and some of my students find it hilarious. He refers to himself as “dumb” repeatedly, so my students talk about how “dumb” he was before the operation like it’s no big deal. It was written in the 60s, when the phrase “mentally retarded” was much more common as a clinical diagnosis and so, it shows up in the story, and my students will snicker and smirk and start playfully diagnosing their friends with it as well. In fact, I’ve heard the R word so often in the halls and in my classroom all year long, and every time I do, I hurt a little inside for my son. Oh and believe me– I always call them out on it and try to shame them into guilt, but it only works temporarily. The next week they’re back to the same old comments and actions.
It’s these behaviors and this attitude toward mental disabilities that has me terrified for our precious boy. Will he experience this kind of mockery on a daily basis as he grows up? Will people try to trick him into acting foolish to get a laugh, like they do to Charlie in the story? Will anyone stand up for him, or will the kind-hearted kids be too afraid to stand up and do what they know is right?
Some might say, kids will be kids– they’re teenagers and of course they’re going to act this way. It’s inevitable. They want to impress their friends and get a laugh, even if it’s at someone else’s expense. Let it go.
For the sake of people like Charlie, and my son, and countless other mentally disabled people across the world that have been the butt of someone’s joke– I refuse to let it go. I think it’s unacceptable to allow this kind of behavior to thrive when people should be teaching their children that it is NOT okay. I hope that you will stand with me and call out these actions when you see them too.
I love this story, but I will be glad when we are finished with it next week. It’s taken a toll on my heart that I wasn’t prepared for, and I honestly don’t know if I can teach this story again next year to a new set of 8th graders. So, yeah, it’s been a tough week.
I’ll close with some wise words from the character of Charlie, once his IQ has tripled and he’s able to look back on his past with a new understanding:
“How strange it is that people of honest feelings and sensibility, who would not take advantage of a man born without arms or legs or eyes—how such people think nothing of abusing a man with low intelligence.”
— Daniel Keyes, “Flowers for Algernon”
I’m going to be completely candid today. My husband and I have been talking a lot about the past, before we found out about Liam’s chromosomal condition. I’ve been remembering the times from my childhood through my adulthood when I would encounter people with special needs. I’m talking about the obvious kind of special needs, where the person might’ve looked very different, acted very different, sometimes shouting loudly things I didn’t understand, sometimes completely non-moving or interacting at all with their surroundings. And I am embarrassed to admit it, but I was scared.
I was scared of people who seemed so very different from me that I didn’t know how to interact with them, so I just didn’t. I didn’t even try to acknowledge their existence in the fear that I might say or do the wrong thing, that they might not understand me, that I might not understand their response, etc.
Thinking back on it now, I am ashamed at my behavior, and so glad that having Liam has changed that for me.
I think it’s a common response to react like I did, but I think that should change. I’ve been following this Facebook page Special Books by Special Kids, where a former special education teacher goes around the world interviewing people with all kinds of disabilities to get to know them and their families. He posts short videos of the interviews in the hopes of making people more aware of all kinds disabilities and be more comfortable interacting with differences. In almost all of his interviews, he asks either the disabled person or the person’s family something along the lines of, “when people meet or see you for the first time, what do you wish that they would say?” Overwhelmingly, people’s wish is that others would not simply look away and avoid eye contact, but instead say “Hi” or give a smile, or introduce themselves. They want to feel included in every day interactions with others, and not like they are so different that people are afraid of them instead.
Watching these videos over the last year and adjusting to life as a special needs parent has opened my heart more than I thought was possible. Liam is only 2 and still small, incredibly sweet and cuddly, and acts much like a baby to many strangers, who still freely give him smiles and coos and sweet comments about how cute he is. My hope for him is that as he gets older and his differences become more obvious in his facial features, his behavior, his speech, etc., that strangers will continue to show him love and kindness and not shy away from interacting with him out of fear like I used to. I am incredibly grateful that our daughter will get to grow up with an awareness of the differences in the world and that her heart will show that love and kindness to all kinds of people as a result. I just know that it will.
My own personal goal is that I will never again feel too much fear to show kindness and love to a person with any kind of disability, even if it just means offering them a smile from a stranger that they may not have received that day. Now my fear is that the future Liam will too often encounter people like me before I had him, that deny him a smile or kind word in favor of blank stares or avoidance altogether.
I mean, how could you NOT smile at this precious boy when you see him?
It’s almost Christmas, my favorite holiday, and I am so proud of our little guy! I was re-reading my last post made in October, and it made me realize that he has come a long way since then. He now signs the word “please” when he wants something (by rubbing his belly instead of his chest, which is super cute), and he can feed himself finger foods now! His fingers are getting more adept at doing different activities, so he is definitely happy to have figured out how to put anything and everything in his mouth.. including yucky cat food 😮 But we are still so happy for him to be able to do this on his own now!
In other news, Liam got glasses just yesterday! We took him to a new ophthalmologist a couple weeks ago, and this new doc did not want to jump right into a third eye surgery like his former doctor always wanted to. New doc suggested we get him glasses for his extreme astigmatism, and the clearer the image he sees may help his eyes align all the time. They are aligned most of the time, and he would benefit from the glasses anyway, so we ordered him some of the special toddler glasses and can’t believe how ADORABLE he looks in them! We were also so surprised at how well he’s taken to them. In the doctor’s office, he hated trying any of them on, but it only took thirty minutes of fighting them at home for him to accept that they were going to have to stay on. He had a doc band on his head as an infant, so maybe that helped him not mind things on his head as much. We hope that his eyes will align a bit more as a result, and that the doctor got all of the right measurements that day because Liam was NOT having a good time having his eyes messed with 😦 Anyway, he definitely looks older with his glasses and closer to his age of 2 years old!! Maybe strangers will stop assuming he is a sleepy baby, which is by far the most common comment we get about him. Now he just looks too cute!
Liam had a big week– in addition to the glasses, he had another ear surgery on Tuesday to get his current tubes replaced. One had fallen out completely too soon and that ear was having a hard time draining and staying healthy, so his new ENT (new doctors all around!) wanted to get some bigger, better tubes in each one that will hopefully be more effective. He did AMAZING this time around with the surgery– there were really no tears before or after!! It was his fifth time to go under anasthesia, and the other times have been REALLY tough for him, so maybe he has gotten used to the whole process and doesn’t mind it anymore. Whatever the reason, I was so grateful that he recovered quickly and we are crossing our fingers that these tubes work better!
Other than that, we are chugging along and constantly reminded of how lucky we are to have such great family and friends surrounding us. Nell has had some wonderful preschool programs so far this year, including one for Thanksgiving and for Christmas. I haven’t been able to go to these in person this year because of work, but thankfully Daddy has been able to go to each one and take lots of video for me to see. I do still feel guilt each time I miss something like that, and for each of Liam’s doctor’s appointments that I have to miss, but like I said, our family has been so supportive and helpful with it all that it makes it easy to forgive myself. It’s okay that I can’t be at every single thing now– as long as someone is there who cares about and loves our kids whole-heartedly, which is always the case.
Merry Christmas, everyone! I hope you have a fabulous holiday season!
Wow, it’s been a while since I posted! Things have been busy, busy, busy around here with me back at work, Nell back at preschool and Liam starting a new day care several weeks ago. But things are going well now that we’re fully adjusted to the changes.
Liam has been making some great progress– in fact, his physical therapy has ended because there’s not much left for him to learn in the gross motor skills area. He still needs help with climbing things, but he practically runs after his sister now while they play and laugh constantly, and he doesn’t fall over nearly as often. We’re focusing more on his fine motor skills now, which is a work in progress. But last week he did something for the first time ever– he fed himself a bite of food off of a fork!! We have not been able to get him to pick up foods with his hands and feed himself, so apparently he just wanted to skip that step and go straight to sophisticated eating with utensils 🙂 As soon as he takes a bite, he drops the fork on the floor. So, still a work in progress, but progress none the less! We are so proud of him for trying something new.
We’ve also started working on some basic sign language with him– teaching him the “please” motion when he wants to be picked up, “no” when he does something we don’t want him to, and “all done” when his food is all gone. You may remember that this boy LOVES to eat, so he definitely knows what the “all done” motion means– he screams as soon as he sees it. BUT, we have noticed over the last couple of weeks that he seems to be getting slightly better at eating out at restaurants. He is learning more patience when eating, and he appears to be a bit more content to just sit and look around. He’s definitely becoming more aware and alert every week, so I guess he’s finding more things to be entertaining.
Unfortunately he had an ear drum burst a couple weeks ago, and he now has a displaced tube in that ear, which means it will fall out sooner than we wanted it to. We are just crossing our fingers that this fall/winter won’t lead to as many ear infections as last year so that we don’t have to do another surgery for tubes to be replaced, but that may be inevitable. He will be getting another eye surgery in the near future for sure, but we’ll cross that bridge when we come to it.
Anyway, things are going well in general and I am loving my school and my job. Apparently I love 8th graders because we really get along, more than I ever have with any other age group I’ve worked with. I also love my colleagues and school atmosphere, so that really helps a lot when going to work each day. I keep thinking that if we end up staying in this house for many years to come, then both of our kids will go to this school and I couldn’t be happier about that.
Also, it’s Fall, and absolutely my favorite season of all. Next month Nell turns 4 and Liam turns 2. Tomorrow it’s going to start feeling like Fall for real here in DFW 🙂
Some pics from the last couple of months:
Since I last blogged, I found a book that I like a lot. I have been on the lookout for a book that might help us navigate our world with Liam, but so many of the books I’ve seen/researched are geared toward a specific disorder that Liam hasn’t been diagnosed with. There are tons of books on Autism/Asperger’s, ADHD disorders, Down’s Syndrome, etc. Of course 18 p deletion is so rare that no one has written a book specifically about it (that I have found, at least), so I was in search of one that might at least cover some of the things that we encounter. I’d say we browse a Half Price Books store about once a week or so, and earlier this month I found one! It’s called Special Kids Need Special Parents by Judith Loseff Lavin.
It was published in 2001, so while it is not exactly “current,” it still feels that way and I have found it to be helpful to me already. If anything, it helps to validate my feelings about being a mother of a special needs child– I flipped to a random part at first and read the words of several different parents in a similar situation as us and felt so…. relieved, I suppose, that they were feeling the same things as me. I like it also because it covers a variety of disorders, from ones similar to Liam’s to just physical abnormalities and all those in between. It gives tips on how to deal with all kinds of issues that we know we will encounter, such as: dealing with feelings of grief and anger; finding suitable, reliable childcare; how to cope with teasing; the impact a child with special needs can have on a marriage, siblings, and grandparents. These are the topics that I’m finding the most helpful for me so far. You might be thinking, is she endorsing this book or something?! I’m really not… I’m just excited to have found something that might be helpful to me and others that have kids with special needs. Of course in this day and age with access to anything on the internet, it may not seem necessary, but sometimes it’s nice to have a generalized approach to these issues and read it from experts that you can trust.
Anyways, in other news I start back at work in a couple of days and I’m finding that I have a new perspective on the entire world of education now that I have a child who will need classroom intervention or special education services. I consider myself to be a pretty patient teacher, and the special ed students that I’ve had in the past have never been a problem for me or my classes because we made it work with the help of inclusion teachers and assignments that were adapted to individual needs. Now that I’m going to be teaching again with this new knowledge about Liam, I hope that I will be even more patient and understanding about each student’s struggles, and of course I want to learn as much as I can about Liam’s options when he gets to school so I can be the best advocate for his education that I can be. It might mean that he will be pulled out of regular classes instead of being expected to perform on the same level as his peers, and that’s okay. It might mean that he will have an aide follow him around to each class all day to help him with school work and behavior, and that’s okay. It will definitely mean that we will have lots of meetings with principals and special education teachers each year to monitor his progress and set new goals, and that’s okay, too. We want to do everything in our power to ensure that Liam gets the best education that will work for HIM, and I hope that my experience as a teacher will help us make those decisions more easily.
We’ve only known about Liam’s 18 p deletion diagnosis for about eight months, but it’s already been a struggle figuring out how to balance life with this new knowledge. Sometimes it’s small things– like how we can’t go out to eat nearly as often as we used to, since Liam is VERY vocal at the dinner table (and not in a pleasant way) and has not learned patience yet, so he can be quite demanding when he wants food, which is ALWAYS! 😛 Even though I really love going out to eat, it has made us have more dinners at home and save some money, so it’s also a good thing.
Other times we struggle with balancing the bigger things… like figuring out how to financially take care of the health problems that we now deal with. Even though Liam is still young and would probably benefit from me being able to stay home with him and work on his progressing skills, realistically we need a second income to help pay for medical bills and other things. I have been feeling a lot of guilt in regards to this decision lately, and I know I’m going to miss my babies so much when I’m back at work in a month, but I also know that they will be in good hands with grandparents, and that Liam will be able to work on his socializing skills when he’s at an in home daycare part of the time. They also get to spend Mondays with just Daddy soon, so I think that will be good for the three of them to have together.
The biggest balance struggle so far has been giving equal attention to both Liam and Nell. We knew this was going to be difficult as soon as we found out about Liam’s diagnosis, and we talked about how we were going to work really hard at not having it be “all about Liam” all the time. After all, Nell is only three and a half years old– a critical age for developing social skills, reading skills, gaining control over her emotions, etc. Liam needs more hands on attention, since he has to be watched closely for safety purposes and still needs his meals fed to him, but that means we need to give Nell different kinds of attention. We try to ensure that Nell gets some alone time with Mommy or Daddy pretty often, so it can be “all about her” for a couple hours. She is a great girl, and a really good big sister to Liam. She needs to be rewarded for that!
It’s so easy to focus on Liam’s health problems, which are many and may increase over time– so far he has strabismus (eyes wander), ear tubes, ventriculomegaly (enlarged side ventricles in his brain), and an enlarged aortic root and small hole in his heart– and Nell even makes it easy to focus on those at times because she’s such a good big sister! I watched a woman with a disability talking about her sister and how she was such an amazing person through the years, and how siblings of children with disabilities often get put on the sideline. Even though I realize that that may be the way things pan out because of where our attention has to be at times, I hope that Nell will not get put on the sideline in our family. It is our goal that each of our children will feel equally loved and cared for throughout their lives, and that no one will feel left out. So far, I think we’re doing an okay job of it.
But we’re excited about it! The first change is that LIAM IS WALKING EVERYWHERE!! He took his first baby steps at 15 months old, but his balance and strength wasn’t quite enough to allow him to walk all on his own yet. But about a month ago he found the confidence, strength and balance that he needed– partly due to a new physical therapist that makes him work his tail off and showed me new ways to strengthen his muscles– to really take off, and now he is walking entirely on his own and all over the place. He’s into everything now since he never crawled and so for the first time has a chance to explore his surroundings… which means we have to watch him like a hawk! A few days after he took off, he had a minor surgery to get tubes in his ears because of the many ear infections he’s had. The surgery went well and since then his balance has improved even more and his ears look good, so we are glad that he got the tubes!
Right before surgery with his Grammy. They had given him something to make him “drunk”:
Some pics of Liam enjoying his new walking skills:
The other big change taking place is that I am going to back to teaching full-time! I have accepted a job teaching eighth grade English at Harwood Junior High for next year, and I’m really excited about it! I haven’t taught full-time since 2012, but I have been doing part-time jobs on and off since then, and I’ve really missed teaching. Now that Liam is one and a half, walking, and generally happy (except when his food runs out… then he’s like The Hulk), and since it is quite expensive to care for a child with special needs (tons of doctor’s appointments, multiple surgeries a year, etc.), we decided that it was time for me to go back full-time. I started applying for school districts near me a couple of months ago, and after a crazy interview process at Harwood and being convinced that they didn’t pick me, I got the call!
Harwood is a great school and I am SO excited about getting to teach there (and it is five minutes from my home!), but part of me is dealing with guilt at not being home with Liam all the time. He sure does love his mommy, so it will be hard at first not seeing him as often, watching him closely to make sure he doesn’t get hurt, and working on his therapies and progress. BUT, we are SO fortunate to have family close by and willing to help with babysitting. I know that he will be in wonderful hands with his Grammy and Daddy Pap, his Mimi and BobBob, and our family friend, Chrissy throughout the week. Thank you guys so very much for your help with our kids!!
Change is in the air, and our lives will be very different in about seven weeks from now, but we are incredibly lucky to have supportive family and friends close to home that help us out in so many ways. We love you guys!
Two weekends ago we went to the first Starfish Dash in San Antonio! It was a great way to raise awareness and money for research about chromosome 18 abnormalities. If you’re new here, our son Liam has 18 p deletion, which means that the short arm of his 18th chromosome is partially deleted. There were only a few people at the Starfish Dash with a chromosome 18 abnormality, but there were lots of people there for support and everyone was very welcoming and kind to us. We hope to go every April as long as we are able to, and continue to make face to face connections with the people there. We are so glad that we went and that we had a big group of family to show support for Liam!
As you can see, we had a great time and can’t wait to do it again next year. In other news, Liam is making some awesome progress with his physical therapy! He recently turned 18 months old, and since then he’s been taking off with his walking– he’s much more coordinated and steady on his feet now. He gets tubes put in his ears next week for chronic ear infections and fluid, so we’re hoping that he’ll be feeling a bit better, hear things better, and have better balance a couple of weeks after the procedure. He can definitely hear now, because he loooooooves music, but he might be missing out on key consonant sounds that he needs to learn. He’s such a sweet guy that deserves to hear things as crisply as possible!
‘Til next time!
In the last couple of weeks or so, Liam seems to really be ‘growing up,’ so to speak. Family members have noticed that he seems older, his physical therapist has been really impressed with his strength and willingness to work hard, and of course, daddy and I have noticed some specific changes too. He actually crawled for the first time recently, but he has decided that he prefers walking and so doesn’t crawl very often 😛
Just within the last two weeks, Liam has started having some separation anxiety when either Daddy or I am gone. He gets so upset when one of us leaves the room now, and whenever we arrive at a babysitter’s house to pick him up for the day, his smile lights up the room! I am excited to see that he’s becoming more observant about who he knows best, and of course it feels great to feel so loved, but I hope it doesn’t make it harder for his babysitters (his grandparents)! Another thing he started in the last few days is drinking from a straw! That has been a big struggle for me to get him to understand how it works. Our daughter picked it up really quickly before she was one, but Liam has shown only disdain for this strange thing called a straw that isn’t as comforting as a bottle. But he figured it out, and that will make things easier on us while we’re out and about for sure! He’s also gotten better at feeding himself little snacks like crackers, and is finally starting to drop food on the floor less and less. He still drops it, but now it’s usually after he’s at least taken a bite, so that’s progress 😉
Yesterday he woke up from his nap and, as I watched on the video monitor, pushed up into sitting and pulled right up into standing in his crib. Another new and exciting thing for him, but it might cause problems when he’s supposed to be going to sleep! He’s also shown more interest in wanting to play with Nell lately and laughing at the funny things she says, and now he’s grown quite fond of our cat, Yoshi. Yoshi is really good with little ones, and Liam has suddenly noticed that she exists and tries to pet her any time she comes near. She loves to walk circles around him and make him laugh while he tries to pet her and “catch” her tail (so far she doesn’t mind, since he’s really good at being gentle).
Anyway, I am really proud of him lately, because I feel like he’s showing a lot of progress all at once in different ways. He’ll be 18 months old on May 1st, and I think he’s doing a great job of working hard and growing up. Part of me is sad, as always in this situation, since my baby is changing and growing and will never be the little baby that he used to be 😦 But I am mainly excited to see him learn with each new skill he acquires!
We also had a great Easter last weekend with family and meals and egg hunts. Liam was able to hunt for his first Easter eggs this year! He was more interested in dropping them for fun than seeing what was inside 🙂
Next weekend we will go to San Antonio with some other family members to participate in the Starfish Dash, which will raise funds for research about Chromosome 18 abnormalities. We’re excited to meet some other families like us and to help support this great organization. Stay tuned for pics from that, and if you would like to donate to the cause, click here! We would so appreciate anything you could give. ‘Til next time!