We just returned from the bi-annual Williams Syndrome Convention, and my brain is still buzzing. We met some wonderful people, chatted with people we only see every 2 years, and learned so much! This was our second convention, and it was every bit amazing as our first one was.
Calub got to go to day camp and hang out with other kiddos his age. They had bouncy houses (his favorite!), a rock wall, crafts, snacks (a close second favorite), dancing, and so much more! The best part? He was with other kids who get it. The other kids at the camp either have Williams Syndrome, or they're siblings/relatives of someone with Williams Syndrome, so when Calub starts to get carried away and asks a million questions, the other kids don't look at him like he's weird. It truly feels like he's with his tribe. He got to take a water taxi, which totally freaked me out at first. I had visions of my child going overboard and sinking (or being eaten by a shark), but he returned to me each day in 1 piece. I'm so glad I put my trust in the Williams Syndrome Association and let him take the boat with his friends!
While Calub was at camp, Ryan and I attended break out sessions that covered so many different topics. We had the opportunity to learn about medical issues with Williams Syndrome, behavior issues and how to deal with his anxiety, education, estate planning, and so much more! My favorite session was a Q&A with 4 adults with WS. They're all at different places in their lives, and they were very open about their experiences with having jobs, living with their parents, going to college, and living on their own. It gave us so much hope. The future feels so uncertain sometimes, but to see these adults managing through college, finances, and living pretty independently just filled my heart. Ryan and I also got some much needed one-on-one time. It was so nice to have lunch with him every day! We skipped a session and had drinks on the harbor, and although that was difficult for me (we spend so much money to go and learn), it was therapeutic for us.
There's so much thrown at us in such a short amount of time that it's hard to remember everything from every session we go to. There are a few things I took away, though, that have been at the front of my mind. The first thing that's stuck is that Calub probably won't always be this crazy impulsive little boy that we're dealing with right now. We had the pleasure of sitting next to a family with an adult with WS at dinner one night, and I was happy to see how well spoken and thoughtful the young man was. He wasn't flopping around or shouting and didn't carry on when the restaurant didn't have the drink he wanted. It was so encouraging! I think I know in the back of my mind that Calub likely won't always act this way (the meltdowns and opposition are strong with this one), but it was so nice to see proof that he will continue to mature. There was a mom in one of the break out sessions who told us all if she had known her son would turn out to be such a wonderful human being, her stress would have been about 2/3 less than it was while he was growing up. I'm going to try to remember this when I feel like I'm losing my mind because Calub is having another meltdown or refusing to do the most simple tasks. Which leads me to the other thing that really struck home with me. At the beginning of the convention, the director of the WSA and the creator of The Mighty website both spoke. I can't remember which one it was, but one of them said, "enjoy this time." Now, whether they were talking about the convention, this moment in our lives, or something entirely different, I can't remember. I just remember stopping and thinking, "I need to enjoy this time more." I've been so bogged down with Calub's meltdowns and opposition that I've been frustrated and short tempered. I have been losing my patience more easily, and once you start that habit of losing your patience, it's easy to get stuck there. Ryan and I talked about this multiple times throughout convention, and we agreed to be more patient. We're going to be more understanding that Calub needs more time to respond when we ask him to do something. We're going to try to stop and consider why he's acting the way he is. We aren't perfect by any means, but we've done a much better job of talking to Calub rather than immediately getting frustrated. It's a work in progress, but I feel like we're headed in the right direction. I'm hoping for more harmony in our house so we truly can enjoy our time together.
My favorite part about convention, though, is the feeling of community we experience every time. This group of people is our family, our tribe. During our first convention in 2016, Calub was racing around, and I was chasing him. A mom said, "Don't worry, Mom. It gets better." That will stick with me forever. There's the feeling of "Me too!" At any given moment, you can find someone who is going through or has gone through the same things you are. The hi's, the hugs, and the smiles are endless. Our hearts are full of joy, and our cheeks hurt from smiling by the time we leave. And, we feel sad knowing we won't get to see some of these people for 2 years. I'm certain I will feel this sadness multiple times over the next 2 years, but I'm so grateful I can reach so many of these amazing people through Facebook. We're already looking forward to a beautiful family reunion in 2020!
I love you, Calub Ryan. Always. Just the way you are.
My phone rang yesterday, and I panicked a bit when I saw it was Calub's school. There are a million thoughts that run through my mind any time the school calls. Is Calub sick? Did he get hurt? Is it his heart? Was he being naughty? The list goes on. It was Calub's special educator, Mrs. Miller, calling to check in because we hadn't talked at all this year. He's been in school nearly 7 weeks, and I have yet to have a conversation with Mrs. Miller. Usually, by this point in the school year, I've spoken to her at least 2 or 3 times. She's always stayed in touch with me, checked in with me, and problem solved with me, which I am so thankful for. She doesn't even have to say her full name anymore; I just know it's her.
She prefaced the call with "everything is fine here" which put me at ease, but she wanted to catch up and talk about the school year so far. The next thing she said was startling: "The year is going so well for Calub! He's doing great!" Now, Mrs. Miller has always been positive about Calub, but the reality is the previous 2 school years have not been great. Many of our conversations over the last 2 years have been in regards to Calub's behavior. He's a sweet, sweet boy, but had a very difficult time controlling himself. He often would hit or spit at his peers, teachers, and aides. Last year, he would crazy laugh and act out to the point of being removed from the class. It was so difficult for me to see this because I knew he needed help, but I couldn't figure out how to help him. I signed him up for equine therapy (horsies), as well as private OT. I bought essential oils, I massaged him, I offered incentives and warnings, I made a sticker chart for good choices, I all but turned myself inside out to help him sort it out so he could be successful in school. I dreaded picking him up from school because I never knew what kind of day he had. Whenever the school's phone number came up on my phone, I was nervous that he had hit someone else.
Seemingly, all of that has changed this year. When I pick him up now, his afternoon aide almost always tells me he had a good day. Calub comes out of school smiling and happier than before. He has a daily sheet that breaks down the activities throughout the day with a smiley face or a sad face for each activity. Last year, it was common for Calub to get half sad faces. This year, it's abnormal for him to get more than 1 or 2 sad faces!
I chatted with Mrs. Miller for a good 10 minutes about Calub, his maturity over the summer, his progress with the different subjects, and how overall he's just a happier boy. I attribute a lot of this to his new independence. He's catching on to reading, he goes to the washroom at school by himself, and he does so much more on his own. I sent him in the house the other day for a bag to pick up after Hazel, and he came back out with a bag! In the past, he'd get distracted and start doing something else. I know we have a long way to go with Calub, but he has come so far in such a short amount of time!
I know now that I've put this out in the universe, I probably get a call saying he took his shirt off in class and was dancing like he was trying to get beads at Mardi Gras, but I have to brag on my little boy. He works so hard for so much, and he makes me so proud.
I'm looking forward to seeing what incredible things he will do this year. I've seen such wonderful changes in him, and I know he can do so much more.
I love you, Calub Ryan. Always. Just the way you are.
Dear Calub Ryan,
My sweet, sweet boy. Yesterday, after an especially difficult time with your reading homework, you said to me, "I can't read because I'm not a smart boy." My heart shattered into a million pieces. I pulled you close to me and cried. Maybe I shouldn't have cried because it made you cry, too, but it was all I could do in that moment. We talked about how amazing you are, and that you are so very smart.
I'm still heartbroken today. I can still hear your sweet little voice telling me that you aren't smart, and I wish I could fix it somehow. Because here's the thing. You ARE smart. SO smart. You may take a little longer than others to grasp concepts. You might not be a fluent reader yet. You maybe still need some help with your writing. But, you. Are. Smart. You remember things that many other people would never remember. Once you get a concept, you get it, and it's like you've always done it. You can read other people's faces and know their feelings.
Here's the other thing. Being smart isn't the most important thing in the world. You're funny. And caring. And you're just about the kindest boy I've ever known. You know when Mama needs an extra hug or 2. You find the beauty in flowers and the magic in the moon. You stop to see the small, every day things that we often pass by. You are courageous. You have been through more in your short life than some people will go through in 80 years, and you still smile as if every day is magical. You have fought for the skills you have when most people would give up. You give your daddy and I strength that we never thought we'd have. And, you can fill a room with so much love and joy. Do you know how many people tell me they just love you and love being around you? Those things are far more important than being smart.
You are a gift, Calub Ryan. I tell you all the time that you are the greatest gift I have ever been given, and I mean it. Your life is not without challenges, but I wouldn't trade those challenges for the world.
Don't you ever believe that you're anything less than amazing, because you are just that- amazing. And, remember, if anyone ever tells you that you aren't smart, you send them to me or Daddy, and we will set them straight.
I love you, Calub Ryan. Always. Just the way you are.
love,
Mama
It's funny the things I remember, no matter how long it has been. I often joke about not being able to remember why I went in the kitchen or that last thing for my to-do list, but I can remember someone's address like some kind of savant. I don't think I can ever forget the day when Calub was diagnosed with heart defects. I for sure will not forget when he was diagnosed with WS. Both anniversaries are this week, and I feel like right now I'm in a good place with all of it.
I was 32 weeks pregnant when my OB/GYN wanted me to go for a growth scan at the maternal fetal clinic. I stomped my feet the whole way there because the last doctor I had seen there chastised me for being overweight when I got pregnant. He just carried on and on about all of the bad things I was putting my baby at risk for, and I was terrified that I was going to get this guy again. As I laid on the bed, I watched the doctor (not the fat-shamer) instead of the screen. I always did this in an attempt to read their faces and body language. At one point, he sat back, tilted his head, and stared at the screen. I knew something was wrong. He confirmed that there was, in fact, something wrong with Calub's heart, and recommended we see a pediatric cardiologist. The cardiologist just happened to be visiting the office that day, but I initially turned down an appointment citing Ryan's crazy work schedule. I was supposed to go to work that day, too, so I'd just have to schedule it for another day. Hello, ostrich syndrome. As the news sunk in, I walked through the hospital to my car in tears. I didn't care who saw me crying; I was devastated. I called Ryan at work to give him the news. He told me he didn't care about his crazy schedule or some important meeting; we needed to get answers that day. We met our cardiologist that afternoon. He was pretty sure that some of Calub's defects would get better, as the heart can repair itself, but we should prepare ourselves for a short NICU stay. I would have to have weekly non-stress tests and bi-weekly ultrasounds to monitor Calub's growth. I wore a pink shirt and we had Subway for lunch that day. See? It's crazy the things I remember.
Fast forward a year almost to the day later, and we were back at Hinsdale Hospital, this time for a blood draw. Calub had been losing weight, and his pediatrician wanted to run some tests to find out why. It was the first of many, many blood draws in Calub's short life, but it was probably the most impactful. It took many sticks and a trip up to the peds department to get the blood, and the results were in as I was walking in the house from this very long day. The pediatrician on call called to tell me Calub's calcium levels were alarmingly high, and we needed to get to Edward Hospital immediately. We needed to get to the bottom of this before he went into a coma (of course she didn't tell me he was at risk for a coma, I found that out later). So, off we went to the ER. I wore a black puffy vest and a blue thermal shirt. Why do I remember such nonsense? Anyway, Ryan asked the ER doc what her take was, and she told us it could be an endocrine issue (I had no idea what an endocrine was at the time), Williams Syndrome, or "malignancies". I'm certain she didn't want to say "cancer" to the parents of a 10 month old baby. I can't say that I blame her. It was after midnight when we were wheeled back to our room in the PICU, exhausted and still with no answers. We met many doctors that week. Calub had another echocardiogram. We all got the stomach flu and were quarantined to our room. We missed Ryan's dad's surprise 50th birthday party. I left the hospital once to go home to shower and get clothes. I sat in Calub's glider and stared at his empty crib and felt so lost and so lonely and so shattered. A week later, we were released with an unofficial diagnosis of Williams Syndrome; we just needed the blood test results to come in. We had a list of appointments to make, and this amazingly useless packet of information. The hospital was kind enough to print off some scholarly articles about WS- things that talked about developmental delays (I think one even used the word "retarded"- talk about outdated information) and medical gobbledygook that made no sense to us. I was thrown into a world of therapies and blood draws and doctor appointments. Ryan went back to work, having never left our side for a full week, thanks to an amazing boss.
Our world hasn't been the same since. I mean that in the best possible way, though. When the ER doctor suggested that Calub could have cancer, I begged and pleaded to any higher being that would listen. I promised to be a better mother. I promised to be more patient. I swore that I would do everything in this world to help Calub if I could just continue to be his mother. I've done my very best to keep my promises. In the meantime, my world has grown and changed into this beautiful place. See, when you have a child with WS, you get to see the world through a different set of eyes. At this point, Calub sees every day as magical. He finds the beauty in the tiniest things. I have learned to stop and literally smell the roses. I enjoy the crunch of leaves under my feet even more than before. I savor the smallest moments. And, I believe I have Calub to thank for all of that. I see other parents miss the small moments because they're too busy or they just can't be bothered. Calub helps me slow down, and I am grateful beyond words for that. He makes this world a better place just by being in it.
I'm still scared for the future. Every now and again, I'm stricken with panic because I don't know what tomorrow will bring. I don't know if my baby will outlive me, and that scares me more than I can possibly explain. I always remind myself that I have him now, and that's what I need to focus on. We make the most of every day, and try to live with gratitude in our hearts and no regrets.
I love you, Calub Ryan. Always. Just the way you are.
Calub has made some really great progress these past few weeks! I am so proud of him every single day, and I feel like I need to share it with the world!
Kindergarten has been rough. It started out difficult thanks to CDiff and a seemingly constant stream of emails and phone calls about Calub's behavior, potty accidents, and a ridiculous amount of head injuries. I was pretty sure kindergarten was going to end me. We're now just over a month until kindergarten ends, and I'm still here. What's more important is all of the amazing things that Calub has been doing this year!
He finally is starting to show an interest in coloring! He has never wanted to color before. If he did color, it was a quick scribble and then he was done. Now he likes to sit at the table and color with us! It's so much fun to watch him color and hear him talk about what he is drawing! He's also getting better at writing! I'm waiting for a weighted handwriting glove that I ordered for him, which should really help him progress with his handwriting.
He has been zipping his own coat, too! For a kiddo with pretty severe fine motor deficits and visual spatial issues, zipping is HARD. He still struggles with it, but he is working hard and persisting even when he gets frustrated. His persistence, although SO frustrating at times, is going to pay off in every way. It makes me so proud to watch him fight to do things that don't come easily to him.
To add to all of the amazing things he's doing, he's starting to really pick up reading! We've been working on it, and sounding letters out has been so difficult for him. He didn't even know all of his letters until this school year. Now, I constantly hear him reading letters on buildings, trucks, boxes, signs, etc. He often tries to sound words out, and is starting to recognize words without sounding them out! He used to fight me on his reading homework, but hasn't in some time.
We've been working on potty training for 3 years now. Three long and painful years. I have to remind him constantly to go and there has been more than one occasion that he's gone kicking and screaming to the potty. He gets what he needs to do, but I don't know if he can't sense when he needs to go or if maybe he doesn't want to stop to go. In the past few weeks, he's started to recognize that he has to go potty! It's usually at the very last minute and he's doing a potty dance, but that is definitely progress, and I will take it! I'm still cleaning up a ridiculous amount of pee in the bathroom, but I'm calling it a life skill at this point. It's not just because he's a boy and he misses the potty, either. It's because if he waits too long to get to the bathroom, the pee comes out like a rocket and it goes everywhere. Thank God for disinfectant wipes!!
I could go on and on about all of the incredible progress Calub has made. His gross motor skills are improving, his eating is improving (only slightly, but I'll take it!), he's even started growing! The best part, I think, is Calub's independence. It frustrates the life out of me sometimes that he has to do everything all by himself. There are some things that he still needs help with, but insists on doing on his own (especially pottying). Although it can be terribly frustrating, it's so amazing! Just like his persistence, independence will take him very far! Ryan and I are both super independent, and we are so proud that Calub is, too! It's an absolute pleasure watching him grow and change and progress, and I'm pretty sure I'm the luckiest mama in the entire world!
I love you, Calub. Always. Just the way you are.
Yesterday was a good day. It was the kind of day where I didn't want to stop playing so I could make dinner. The day before was, too. There haven't been very many days like that over the past month. The majority of the days have been frazzled and crazy and hectic and stressful, which makes the past 2 good days really worth celebrating.
Calub's sensory processing has been way out of control recently. As a result, his sleep has fallen apart, and his behavior has been less than stellar. He has been hitting, spitting, racing around like he was on fire, shrieking, just to name a few. The most prominent behavior was the gibberish. He's been speaking in made up words for weeks now, and no matter how hard we have tried, we have not been able to replace the gibberish. It's been constant. The gibberish replaced his speech. We weren't having conversations anymore. He was always shouting at us or using this new made up language that we just couldn't wrap our brains around. It's been stressful and exhausting.
He's always been a sensory seeker. He's always rocked, spun, or flapped, and we've just kind of accepted it. After he started full day kindergarten, the oral sensory started. He was blowing raspberries, which resulted in him spitting everywhere. Then he was shrieking. I don't even know what came after that, but it's been months of oral self-stimulation. Every time we would extinguish a behavior, a new one came up. We worked with him, but at the end of the day we were spent and we just didn't know what to do.
I found out that he was behaving the same way in school. The school simply told me he was "acting silly". They didn't tell me he was screaming through the hallways or spitting at his friends. When I found that out, I knew we needed to do even more than we had been doing. I was heartbroken that he was having such a hard time just existing in his own body. He wasn't sleeping well. He was waking up in the middle of the night and rocking. He'd lay down, then sit up to rock. Then he'd lay down, and stand next to his bed to rock. He was up and down for hours. I was starting to feel like we would have to stop going in public because he was such a mess.
So, I practically bought out the sensory toy department at amazon, I ordered essential oils, I bought a compression shirt, I read articles in educational journals, I googled, and I searched online for any tip or suggestion or idea to help him feel better and start to function again. We cut out gluten from his diet because I had read and heard that it might help. I would have sold my liver on the black market if it meant my little boy could function in this world.
I spoke with Calub's special educator last week. She called to check in to see how things were going at home, and if she could help us in any way. She said they were experiencing the same things we were, but on a smaller scale, of course. When we went to the pediatrician for Calub's annual physical on Monday, I went armed with information and a request for a script for a private OT evaluation. She watched Calub race around the room, shrieking and interrupting us, and she asked if this went on all day long. When I told her yes, she kind of laughed and said, "That's a lot of work!" I felt relieved knowing that someone else was seeing what I was seeing. I felt reassured that I wasn't losing my damn mind, and that I was doing the very best I could.
I called a therapy clinic and scheduled an OT evaluation for next week. I'm both nervous and excited for the appointment. I'm praying that this OT will see what I see and agree that he needs some extra help.
Calub's speech is closer to normal (for him) than it has been in weeks. He's speaking in sentences again, asking for things politely, and not just shouting gibberish at us. We used to do this thing where I'd say "I love you!" and he would say it back and then we would just keep saying it over and over again until it came out as "I LOVE YOOOOOOOOOOOOOOOOUUUUUUUUUUUUUUUUUUU!" Yesterday was the first time we had one of our silly "I love you" chats in I don't know how long. I always said I would never take his speech for granted, and I mean it. I really super mean it.
I know not every day is going to be perfect. I don't expect it to be. We'll have bad days mixed in with our good days. Having 2 good days in a row gives me hope, though, for more good days ahead. I don't feel so helpless right now, and that's an amazing feeling.
I love you, Calub. Always. Just the way you are.
You know when you stub your toe so hard that you can't breathe and you just want to swear at the thing you stubbed your toe on?? That's what kindergarten has felt like to me. It's been nearly 3 months of toe stubbings. My feet hurt.
When Calub started kindergarten, he was wearing underwear, but he wasn't yet letting us know when he needed to go. So, I basically was a potty stalker and took him constantly and asked him repeatedly throughout the day if he needed to go. I told his teacher, his special educator, his aides, the nurse, and basically anyone who would listen to me that he needed to go every hour and they would have to stay on top of him. He came home nearly every day with at least 1 dirty pair of underwear. Most days, he had 3 or 4 pairs of dirty underwear. I learned quickly how to scrub dried poop out of underwear. It's disgusting, but underwear isn't cheap. I'm definitely adding poop scrubber to my resumé. It's totally a life skill, right?
A couple weeks into kindergarten, the explosive diarrhea started. (Sorry, I swear this entire post isn't about poop. It's just a large part of my life. For nearly 6 years now.) I kept him home from school, I took him to the doctor when it went on longer than I thought it should, I obsessed over the poop. Dr said it was probably viral, and we talked about ways to help him. He wasn't acting sick, nor did he have a fever, so we toughed it out and I scrubbed more poop out of underwear. After several phone calls to the pediatrician office, I finally dragged Calub back into the office for an exam. He had lost a pound in less than 2 weeks, which is a lot for such a little feller, so I had the task of collecting a stool sample to send in to the lab. I can now cross "scoop child's poop from bucket into small container with a plastic spoon" off of my bucket list. Turns out he had an amazing intestinal bacteria. The doctor didn't know how he contracted it (I'm blaming the lake water he drank), but he needed antibiotics. Most parents know that antibiotics cause diarrhea. Yep, more poop. Thankfully, knock on wood, the poop issues have been resolved. For now.
In the midst of all of this pooping business, the school decided to change the drop off and pick up routine, to "make it easier" for me. Whatevs, I got to give him a hug as he was going to school and squeeze him the second I picked him up. A couple weeks after that, they changed the routine again. After the 1st change, an aide had been walking him in the school to his classroom. Then, they decided to make him more independent and send him into school (still through the front door) with just his classmate. That's great! I love independence! They didn't let me know they were making this change, so that Monday morning I was in a panic. Did he end up in the right class? Was he on the roof? Did he book it to the busy main road? Turns out there are adults just inside the door to make sure Calub and his classmate make it to their class. Thanks for the head's up, school. I need a Xanax.
Things were going pretty smoothly for a week or so, and I thought, "I haven't heard from the school in a while!" I totally jinxed myself. I got a call that day from the nurse letting me know that Calub had tripped in school and knocked his head on the floor. She didn't make it seem like a huge deal, but said I should come in and get him so I can watch him for a concussion. When I got there, he had a giant goose egg and bruise on his noodle right above his eye. Apparently he tripped and landed on the concrete floor. He still has a mark and a bump 2-1/2 weeks later.
The week after Halloween, I got a phone call from his special educator letting me know that Calub was acting extra silly, and asking for suggestions on how to calm him down. What she meant by "silly" was he was racing around the classroom and screaming. I attributed this ridiculous behavior to the time change and a Halloween hangover. I was certain he would get over it quickly, but I worked with him to try and calm him down. He didn't get over it quickly, though. Last week, his classroom teacher walked him out of school, and I just knew that was bad. Calub was removed from his classroom twice for nearly an hour each time because he was yelling and being disruptive. In one instance, it took nearly 45 minutes to calm him down. He ended up on red that day (red usually means a trip to the principal, though I'm not sure if that actually happened). I hunkered down and started to work even harder with him. I ordered bunch of sensory stuff and we started using his therapy swing more frequently. Every day is different, so I try different strategies each day to help him get organized before school so he can get through the day.
Last week, as we were getting home from gymnastics, Calub said, "Collin bite me." I flipped out and apparently scared Calub because when I tried to get more info out of him, he told me it didn't happen. The next day, I found a bite mark on his leg. It turns out, his classmate did, in fact, bite him. I emailed his classroom teacher and special educator and they have added an extra adult on the playground and are working on teaching appropriate behavior on the playground.
I've been in touch with his special educator, classroom teacher, and nurse so much that I feel like we should all get together and drink wine. We all just want Calub to be successful, so we're working together to strategize different ways to help him function throughout the day. I am so, so thankful to have such an amazing group of people who want to work with Calub and myself to help him. I know that's not always the case, and I thank my lucky stars every day for our grade school.
Despite all of the toe stubbings, some really great things have happened! Calub has been really successful with potty training over the last couple of weeks! I haven't had to scrub poop out of his underwear in a long time, and he only came home with 1 dirty pair of underwear last week because he went down a slide. (I probably just jinxed myself, but I'm super proud! It's been nearly 3 years in the making!) He's SO independent, too! He gets himself in his car seat, he wants to potty by himself, he wants to do it all "all by myself." Although it can be frustrating to watch him struggle, it's such a gift that he wants to be so independent. Ryan and I want him to be as independent as possible when he's an adult, and this is a great start! He 100% has my personality, and that's both amazing and terrifying! His letter recognition and letter sounds have improved a million percent! He is sounding out words now, and is really showing an interest in learning to read! Calub hasn't even been in school 3 months, and I'm seeing such progress with him! I tell him all the time that I am so proud of him. At his parent-teacher conference last week, his speech path, special educator, and teacher all talked about how wonderful he is, and what a hard worker he is. We are bursting!
As for me, I still miss Calub so much it hurts sometimes. I still cry after dropping him off, though it's not daily. I've learned that eating and buying my feelings won't help anything, though I'm sure Calub is enjoying his new fall wardrobe. I've found some healthier ways to tackle my anxiety while he is in school. My house is cleaner than it's been in a very long time! I'm thrilled to pick him up every day and hear about his day. His team has put together a communication folder so I can see everything he does in a day, and he's getting better at telling me what he did (besides "I ate and I played"). At least once a week, I feel the need to go to school and squeeze him, but I wait until he gets out of school and give him extra hugs. Next week is Thanksgiving break, and I am so looking forward to spending some extra time with him!
Kindergarten definitely has not been without its challenges, but I'm so thankful that we're in an amazing school with an incredible staff. I thought my biggest problem would be finding the right container to put his lunch foods in...
I love you, Calub Ryan. Always. Just the way you are.
While Calub was at camp, Ryan and I attended break out sessions that covered so many different topics. We had the opportunity to learn about medical issues with Williams Syndrome, behavior issues and how to deal with his anxiety, education, estate planning, and so much more! My favorite session was a Q&A with 4 adults with WS. They're all at different places in their lives, and they were very open about their experiences with having jobs, living with their parents, going to college, and living on their own. It gave us so much hope. The future feels so uncertain sometimes, but to see these adults managing through college, finances, and living pretty independently just filled my heart. Ryan and I also got some much needed one-on-one time. It was so nice to have lunch with him every day! We skipped a session and had drinks on the harbor, and although that was difficult for me (we spend so much money to go and learn), it was therapeutic for us. 
