Mother’s Day 2020

Happy Mother’s Day to all the mamas out there that are doing a FABULOUS job of loving on and caring for their kids! This year feels different than past years to me, with the whole quarantine/isolation aspect of it, but maybe that’s just me. We are starting to venture out a bit in the world and letting the kids see their cousins occasionally, some small family gatherings… but I think the last two months have done a number on us– especially our sweet Nell. I don’t talk a whole lot about her specifically on this blog about living life with a child that has 18 p deletion, as she is a typically developing child without special needs. But she is our firstborn child, and such a wonderful person and sister– I want to take a moment to talk about her too on this day about being a mother!

Nell is six and a half years old, and sadly, this school/life/everything shutdown happened at the end of her Kindergarten year. She loves school. Nell is an interesting person– she is extremely shy around almost any adult, and even around many kids– yet she seems quite extroverted in that she LOVES to be around them, even if she doesn’t always talk much. So, this isolation from others her age has been really tough on her as she craves that social interaction with a non-adult! She does have Liam, and even though they have had more “play times” than ever before since all of this time at home, it is still hard for her to really get what she needs from him, as he can’t communicate and his attention span on an activity or toy is about ten seconds 🤪 So she tries to play with him, but he quickly loses interest and finds something else to do. She has really been struggling with her emotions and reactions to anything at all the last month, and I know that the lack of socialization with her friends is a huge part of that. So, this Mother’s Day I am trying to remind myself to be patient and understanding with both Liam AND Nell during this strange time in our lives.

Of course, ever since we learned about Liam’s condition three and a half years ago, Mother’s Day has also taken on a new meaning for me. I’m a part of the special needs mom club now, and I gotta tell you, it was terrifying at first, and some days are still so hard that I find myself having to take deep breaths and calm myself as I think about the future for Liam– but I am truly proud and grateful to be a part of that club. The other night, after Liam was showing some minor progress on clapping his hands for “more” food at dinner, I was lying in bed and getting choked up talking to Will about how it is such a special experience to be Liam’s parents, and how lucky we are to be part of something that the average person doesn’t have. I don’t mean to make you feel left out 😬, and of course there are really hard days where I wish that we could have a more “normal” life, but it is such an honor to be a parent to both Nell and Liam; to be members of the exclusive special needs’ parenting club; to have a new understanding of humanity that raising Liam has already provided us.

Anyway, I always intend to write a brief blog post, and it never happens! I’m sorry, readers. Thank you for sticking with me if you made it this far. I will end on some pictures from this Mother’s Day morning, where Will and Nell showered me with cinnamon rolls and cake they made together ❤️

Two years late! 😱

Although it’s almost been two years since my last post, I was recently contacted by a sweet mama in New Zealand that had found my blog about Liam and found it comforting after discovering that her child has 18 p deletion syndrome. Every once in a while, I get a message like this from someone somewhere that found my blog and was grateful for it, and it always makes me want to start it up again when I have the chance. Life has been so busy these past two years, but with Covid-19 sort of taking over and forcing us all to slow down a bit, I decided that it would be a good time to start it up again on the weekends. Life is still crazy, don’t get me wrong– with Will and I still working full-time jobs and two kids needing to be homeschooled and supervised and going a little crazy without social interactions– but it has also given me the gift of time in a lot of ways, since we don’t get out very often right now.

I won’t make this first post back super lengthy and scare you all off– I know that I can be too verbose when I write for my own good at times 🤭 But I will share that I have been thinking a lot about Liam’s future lately, and I am having some anxiety about it. Last time I posted, he was only 2 and a half and had plenty of time to “catch up,” so to speak. Well, now he is approaching 5 years old, and honestly, in many ways he is still that same 2.5 year old from before. He has had some minor developments, but he is still non-verbal, non-communicative (no sign language), years away from being potty trained we think, and very behind cognitively– I’d say he’s on the cognitive level of a 1.5 year old. He is also quite small for his age, which I guess sort of helps when we’re out and about and strangers approach him. Based on his appearance and abilities, they assume he’s 1 or 2 years old, and I gotta say, it is STILL not easy for me to inform them that actually, he’s 4 years old but has a chromosome abnormality and major delays…. sometimes I don’t even bother and let them just go with their assumption because it’s easier, especially as he gets older. Am I wrong to do so? I like to think not, because not every stranger needs to know Liam’s life story. But I still do feel guilty about it and later wish that I had responded differently.

I’m still searching for the best brief explanation to give strangers that ask about his age– or when he’s acting crazy in a restaurant and it’s obvious that people are annoyed (PS– will we ever go to a restaurant again? 😭)– so I’m looking for tips on that. “Special needs” and “a chromosome abnormality” doesn’t seem to cut it, but “he has 18 p deletion” just gets looks of confusion. Any suggestions?

Until next time (hopefully next weekend), here are some updated pictures of our littles from the last six months. You can see that Liam is still looking pretty much the same, and we still have struggles with his glasses, but he is still as handsome as his sister is beautiful! ❤️

December 2019– the last time they had a proper haircut !
Easter 2020– crazier hair, no glasses (his usual look these days 😆)

Summer fun!

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 😉

Flowers.

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”

Fear.

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?

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Christmastime is here!

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!

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Waiting to go back for surgery. He was all smiles!

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!

 

Fall update

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:

Advocate

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.

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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.

Balance

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.

 

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Popsicle time with Daddy

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Taking little brother for a walk

Change is in the air…

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”:

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Some pics of Liam enjoying his new walking skills:

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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!