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:

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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!

Starfish Dash in SA!

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!

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My girl and me getting ready to walk.
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Excited to support our little dude!
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Thank you to everyone who contributed to Liam’s League! We raised over $600!
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We were so glad to have everyone there with us, and we got to meet Batman, Robin, and Batgirl! (Our kids were happy, even though they weren’t smiling for the photo)

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!

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Liam loves to hear and watch Daddy play his instruments 🙂

‘Til next time!

Growing up

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).

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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!

A special bond

Our daughter (Nell) and our son (Liam) have a special bond. Nell is three and a half and Liam is one and a half. When Liam was born two Novembers ago, Nell immediately took to him. We had heard stories and seen videos of older siblings throwing fits in the hospital upon meeting their baby brother or sister, and I will admit that I was worried that Nell was going to be like that. She is a strong-willed little girl and always has been, and she had gotten quite used to life with just Daddy and me. But even though labor took 16 hours in the hospital and she had to wait around for much of that, and even though she had to stay up super late for a two year old so that she could meet him at 11 pm, she was still excited to see her new baby brother and show him love.

17 months later and she is still kind to her little brother. When he was a newborn and demanded lots of my time with feedings and such, she experienced a few moments of jealousy, of course, but I was surprised at how okay she was with it all. In general, she has been such a good big sister to him already and loves to help look out for him. Oh, she has her moments of course (and they are BIG moments sometimes), but overall she loves to have a little companion to play with and talk to. The last couple of months they have gotten even closer, as Liam has become more mobile and more aware of his surroundings. Nell likes to be chased by him when he’s in his walker, and likes to push him on the swings at the park, and she likes to pretend to be his mommy and put a bow on his head 🙂 She also helps me keep an eye on him now that he’s figured out how to get around the house more. He pushes up into sitting now, so sometimes I will be working in the kitchen and Nell says, “Mommy! Liam is sitting too close to the fireplace!” It really helps me out, since he could get really hurt if he falls back into that fireplace! Many times when I am dropping them off at a babysitter’s house, she asks, “Is Liam coming too? I like Liam!”

Will and I have often wondered when she will be old enough to understand that Liam is going to grow up a bit differently than most people. She already knows that he sees lots of doctors and has “doctors” (therapists) come to our house to work with him on a regular basis. My sister Shea has older kids (age 7 and 5), and we asked her what she told her girls about Liam once we got his diagnosis. She said that she told them, “Liam might take a little bit longer to grow up than other kids.” I thought that was a good way to explain it to a little kid, because essentially, it’s the truth! He is taking a bit longer than the average in learning how to walk and talk, but he is learning more week by week. For now, the only thing that matters to her is that he is her little brother and that she loves him so much. She has so much fun with him already, and he is getting more fond of her every day too. They have a special bond already, and they still have a whole lifetime together. I am so happy that they have each other– and that Will and I have both of them in our lives.

Spring Break!

This past week has been spring break for the kids and me, and even though we didn’t get to go on vacation this time, a lot has happened! First, Liam got his first ever haircut! He has very thin and light-colored hair, so some of you might be thinking, “why would you cut his hair when he hardly has any??” But really, it was a lot of hair that was growing in all kinds of funky ways and driving me crazy. So, we got it tidied up at one of Nell’s favorite places, Kool Kutz 4 Kids. He did great and liked sitting in the car. This is a “before” picture. (I realize now that I don’t have a good “after” picture yet. Oh well.)

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A couple days later, the kids and I joined my mom (Mimi) for a staycation in Fort Worth on Monday and Tuesday! We had a blast, especially Nell— she LOVED every thing that we did, which included a train ride through Forest park, the National Cowgirl Museum, playing at the fountains and water gardens downtown, and riding in a horse and carriage at the Stockyards. It was chilly weather the whole time, but the kids didn’t seem to mind as much as my mom and me 😀

We had a great time with Mimi, and later in the week Liam made a huge accomplishment: he pushed up into sitting position from the ground ALL BY HIMSELF!! This is something we’ve been working on for a long time in physical therapy, but he had no interest in doing it because he hates using his arm and leg muscles in that way. But I showed him a new way to do it one morning, and a couple hours later, he was suddenly sitting up by himself! I was shocked and excited, but now I’m feeling worried because he gets all around the floor now with his army crawl, and since he can sit up by himself now, that means he can fall back and bang his head anywhere now too 😦 Liam has trouble with balance, and even though he’s been sitting independently for ten months now, he still sometimes falls backwards on his head. I’m not sure when that balance is going to get better, but I hope it does soon so that I don’t always have to worry about his head getting hurt (we did go out and buy a bigger, thicker rug to help in that area, since our other rug was so thin it basically gave no padding at all). If you want to see him mastering that skill, click here for a video. Now he’s scooting over to the couch, sitting up and pulling up on the couch all by himself. This really is a game changer for us, people!!

We’ve had a great spring break, and it’s back to work and school for Nell and me this week, but first I’ll leave you with this video of Liam enjoying himself on the swings at Parr Park a few days ago. There’s just something about a baby’s laughter that can brighten your day, don’t you think?

A new perspective

We’ve known that Liam has 18p- for almost five months now, and while there are still days that it’s difficult to accept and be okay with it, it IS getting easier to embrace it. In the beginning, Will (husband/daddy) and I couldn’t stop thinking about the far future and what it might hold for Liam. Will he be able to have a conversation with us as he gets older? Will he be able to read? Will he ever have close friends, and is it possible that he could fall in love and get married? Is going to college completely out of the question for him? Questions about the future like these began to take over our minds, and it wasn’t good for any of us. I think that this type of reaction is normal when finding out such life-changing news, but every little thing that Liam did or didn’t do ended up having repercussions in our minds about some huge step in the future, and that wasn’t fair to him or to us.

The thing about 18p deletion is that it’s hard to find anecdotes online about people that have it, because it is very rare. 1 in 50,000 people are born with it, and that means there isn’t a large online presence of people posting about either themselves or their children with it. (Which is one of the reasons that I wanted to start this blog.) But we were able to find some important information about it from his geneticist, and then from The Chromosome 18 Registry and Society, and other various resources online. One of the most common challenges that people with this deletion face is trouble with speech– that seemed almost a given when it came to any story we read about or video we found of people with it. We are lucky to know that Liam has it at such a young age, because he has already begun speech therapy services at one year old and they are already making a difference after only a couple of months! But he will likely still have trouble articulating his thoughts and forming words clearly in his life, and that’s okay. One of the major things that I have learned in doing my research is this: we have no idea what Liam’s potential is! I’ve read blog posts written BY adults with 18p-, telling their stories and sharing their accomplishments. One such lady was in her twenties and engaged to marry a man named Liam (ha!); another one was accepted into a university in the UK and about to attend college; other information is often provided by the parents of children with it, and I’ve seen varying degrees of challenges and accomplishments there, too. The point is this: we just don’t know what Liam will be able to achieve in his lifetime, and we can’t use this label of having “special needs” as a box that will stifle him. I want him to reach HIS fullest potential and achieve HIS personal goals as grows up, not mine or Will’s, and not the school system’s. I want to work with him in areas of physical and mental development as much as I possibly can and then see where HE goes from there.

I don’t hate the word “special” when referring to people like Liam, but it does rub me the wrong way at times. He is a special child, yes– but he would be either way, and so is my daughter, and so are your children, etc. He has special needs and will likely be in special education in school, but I don’t want him to only feel labeled as one thing. We were terrified at first of our family having to live a “special” life and go through more challenging experiences than a lot of people, but we are learning to embrace it. In some ways now, I’m excited that we get the opportunity to live a unique and different life than the average family! We know that there will still be so many difficult times and hardships to face (as there are in every family), but Liam has given us an opportunity to become better people, to live a unique lifestyle, to celebrate the tiny little things in life, and to love a very special little person. We are the ones that get to raise this cool little dude, and help him, and watch him grow into a man. For that, I am truly excited!

 

Baby steps

Before we found out about Liam having 18 p-, we couldn’t figure out why he was developmentally behind in several areas. He couldn’t sit up independently until he was over eight months old, he was always way too weak to hold his head up off of the ground (but his head is QUITE large compared to his body), he never showed any interest in learning how to clap or wave, etc. In other ways he was on track or even ahead of his age, but in so many ways he was falling behind, and it started to weigh heavily on our minds that we were doing something wrong.

When he was around seven months old he started physical therapy for the first time. They came out to our house once a week to help teach him how to sit up unassisted (really it was more about teaching me how to teach him). He actually picked up that skill really quickly in just a few sessions, but when the focus changed to crawling on hands and knees at 8.5 months old, he was just not interested in learning how to do it. This boy just HATED holding his head up off the ground, and while he has made huge strides in that area and can actually do it for fun now, he still does not want to ever be on his hands and knees. He prefers to do a semi-army crawl to get around, or even just roll all around the floor. So while we’re still working on being in the hands and knees position so that he can learn to get in and out of sitting, he has shown a lot of progress in many areas thanks to his physical therapy.

From three months old, Liam has always loved standing on his own two legs. Because it was his favorite position from such a young age, he was able to build up his leg strength over the last year. He’s been playing around in his walker for several months now (this is his favorite activity, especially when big sister Nell is involved and she chases him around on her scooter), and he was getting progressively better at standing on his own without assistance. The day before he turned 15 months old this past month, he decided to take his first real steps without any help!! It was right before a physical therapy session, so he was able to show off his new skill to his therapist and daddy got it on camera. I can’t post the video on here, but here’s a link to youtube so you can view it. Needless to say, we were all SO thrilled that he took real steps by 15 months old, and is learning how to improve that skill each and every day. (Here’s another link to a video of him two weeks later, walking in shoes even!) We had heard that kids with 18 p- usually learn to walk between the ages of 2 to 5, so he seems to be ahead of the game in that area 🙂 He has a long way to go in building up his muscle strength all over, but we are so proud of our little man’s achievements already.

When our daughter learned how to walk a couple years ago, it was such an exciting experience for all of us. I was worried that milestones like that for a second child wouldn’t be as exciting the second time around– but I was so wrong! I am just as excited, maybe even more so, that our little boy was able to overcome his obstacles and make such a huge leap by taking a few baby steps. This is one proud mama and daddy over here, and you can see it on Liam’s face every time he walks that he’s incredibly proud of himself too.

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Stay tuned for more updates on Liam!