Little A's Quarantine Update 2020

The coronavirus has brought many emotions and uncertainty around the world. It is definitely scary for anyone and for any parent.  I am extra worried for Little A simply because he has a narrower windpipe and a nebulizer for when he gets bad colds. I have been in tears many times thinking of the worst. He has already been through so much I can't even imagine and, quite frankly, don't want to think about any loved one going through that. We have been very careful and even more so now that things are opening back up in New York. When this started, Little A was under two, so we didn’t think about having a mask for him. He does not go anywhere other than home, grandma’s house or a drive in the car.  Now that he is two, we have started to think about what happens if he has to go somewhere and needs a mask.  There have been some jokes about his little ears and nowhere to hang the mask from (yes, we know we can make one that ties). I’m sure he won’t like to wear it anyway.  We are going to make him a mask, just in case, but for now we are a lot more comfortable with not taking him anywhere.  He did put a mask on for fun one day when he was playing with the little tikes shopping cart and grandma said “wait, you need your mask before you go shopping” (see picture below). It was funny, cute and sad that it is the way of life now.  

We have quarantined with Little A’s Grandma and Pop-pop the whole time which was good not only so we could do our jobs, but also for Grandma’s sanity.  Little A had started Gymboree classes a few weeks before all of this and was really starting to love it. It was nice to continue to practice motor skills while practicing some new social skills.  We understand obviously why everything needed to close, but still made us sad he could no longer go.  Grandma and I can teach him all kinds of academics, but he needs to be around kids his age to learn social skills. We hope he will be able to go to a toddler program in the Fall.  Sorry for the little tangent….so back to quarantining with the grandparents being a great idea.  When it all started, Jeff was deep in his busy season and really needed to focus 10-12 hours of his day on work. I am a teacher and thought since we weren't video chatting with the kids I would have more flexibility, but I was quite busy everyday. Even though Little A has started to play independently he still needs/wants a lot of attention.  Here comes Grandma to the rescue. The two of them learned and played together everyday (it helps that Grandma was a preschool teacher). From my perspective, it was harder to be home and watching them play...made me wish even more that I could join in too.  Grandma was watching Little A while we went to work before all of this happened.  One day, Grandma needed a break so Jeff and I tried to balance our schedules while watching Little A. That didn't work out well. Jeff forgot I had a staff meeting video call and had taken a work call at the same time. Thank God during all staff meetings I could keep my camera off and mute myself.  It was hard to divide my attention with a toddler who didn't want to sit at the table. I guess I had forgotten to buckle him into the booster seat because I looked up and he was sitting on the table next to my laptop.  In other words, a day without Grandma didn't go well.  

Little A has continued to receive speech services, but just like everyone else it has gone virtual. He logs into Zoom for 30 minutes twice a week.  It started out well and his speech therapist was being very creative. Now we are all kind of over it. It is hard to come up with ideas to hold his attention so he will sit in front of the screen for that long.  When it was in person, he was able to move around a lot more to bring his therapist things that he wanted to play with that day.  It is harder to follow him around with an iPad and can make the other person very dizzy.  Also, Little A sometimes just talks softly, so we are constantly repeating what he said to make sure his therapist heard.  Other times our activity was too good of an idea and he is too focused on what he is doing that he isn’t even talking. My favorite activity that we have done is making ice cream in a bag and Little A’s favorite part was eating the ice cream. You put the ingredients (half and half, sugar, vanilla extract) in a bag, put that bag in a bigger bag with ice and salt and shake until you get ice cream. He loved pouring in the ingredients, but told us no shake. When it was time to eat, he asked for whipped cream and chocolate chips on top.  We have also played with Play Doh, sand and water a lot.   Sand made a big mess in the house, but that was the only way to get him to come back inside from the sandbox in the yard in time--bring some sand with us.   Little A loves water and enjoys pretending to wash animals in the “bath”. We also have read many books and have made them as interactive as we can.  One book has velcro animals that come off the page, or we find toys/action figures/animals that can be used with each page.   He has met his goals along the way during his Zoom speech sessions, but it still isn’t the same. It is harder to work on what his lips/mouth should be doing for certain letter sounds when he doesn’t want to look at the screen. Little A used to look forward to his therapist coming over and would wait by the door to let her in. Now he looks forward to clicking the “bye” button to end the Zoom session. We hope soon that speech can be in person again, even if his therapist has to sit 6 feet away with her mask on.  We are lucky to have enough toys that can be used in his sessions.  It is much easier for Little A to interact in person than over Zoom.  Our fingers are crossed that the Fall will bring back some “normalcy”--whatever that may mean.  

Much of our days are spent either playing outside, going for walks or in the pool.  He loves to be outside and would spend all day there if we let him.  He rides a kids ATV and wants to be just like his big cousin. He also enjoys the swings and the sandbox in Grandma’s backyard as well.  We have attempted to take a couple of walks/hikes. The first one at a local park, Little A was distracted right away by the picnic tables that were near the entrance of the trails. He kept saying “picnic” and trying to run to sit on them.  In hindsight, we should have disinfected one and let him have a snack before we started.  We ended up having to carry Little A through most of the trail until his mind was no longer on the picnic table. I’m glad we chose the shorter path. This path had a rocky stream that we allowed Little A to put his feet in.  Of course Little A wanted to go further into the stream to try to swim.  Needless to say, we carried him away from the water and a good portion of the path back to the car.  Another hiking path we did a couple of times is right around the corner from Grandma’s house (well about a mile away).  The first time, which was a 90 degree day, I thought it would be a good idea to walk to the path. We convinced Little A to ride in the stroller for this part at least.  We brought his little doll stroller with his bear sitting in it thinking he would do a lot of walking if he had something to push too (plus a lot of walks around the block at home include Little A wanting to push his own stroller--this usually does not turn out well).  He was walking fine until about halfway through the path, he kept going to the edge where it drops down a bit and telling us he wanted to go down.  At this point, we convince him to go into his stroller for a snack.  The first half of the path is shaded, so even though it was 90 degrees out, the sun wasn’t beating down on us.  A lot of people just turn around and take the same path back to where they started, but my bright idea was to continue around to the other part. I did not realize that there was no shade on the other half of the path and that it was a lot grassier than the first part too, making it harder to push the stroller and, oh yeah, did I mention it was uphill a bit?  Little A ended up napping in the stroller for the rest of the hike back to Grandma’s house and Grandma and I can’t even describe the amount we were sweating.  By the time we got back, we had walked 3.5 miles in 90 degree weather.  Recently we decided to go hike on the same path, but it was only 80 degrees out and we drove to the path. We only did the shaded half of the path--so a round trip of 2 miles. Little A walked about 1.5 miles, eating snacks most of the way.  He loved dragging sticks, and looking for animals (birds, squirrels, bunnies) and leaves.  He took a good nap that day!  When we aren’t going on adventures, it is nice to just play at home some days too. He recently got a new playhouse for the yard, which he loves to push the doorbell and pretend to play.  He even “mowed” around it with his bubble mower while we mowed the actual lawn. We are trying to help build his independence and practice speech with everything we do and a good way to do this is have him help in the kitchen.  Little A likes to pour his cereal and milk (with help) into his own bowl. He is also really good at spreading the sauce and adding cheese to a pizza crust.  Just this morning, he wanted to put the applesauce into the reusable pouch himself--so I held it open as he would put one spoonful into the pouch and one spoonful in his mouth until the cup was empty. He was so proud of himself.  As we do these things, we are making him say the actions he is doing.   With everybody working from home, Little A gets to spend more time with his Dada as well as his Pop-pop. Pop-pop may not admit it, but he definitely loves his Little A daily interruption--as long as he is not on a conference call.  Sometimes Little A is asking him to fix something, sometimes he is sharing a toy and other times he is seeing what snacks Pop-pop has in the office. Little A gets to see more of his Dada too. It was busy season when this started which meant Jeff would be leaving the house way before Little A was even up and returning by the time we were asleep. Now, we take turns who gets up with Little A in the morning and gets his breakfast ready. Since Jeff’s commute is now down the stairs to his office instead of over an hour to the city, he has time to snuggle with Little A watching Mickey Mouse or T.O.T.S. in the morning. He is also able to sit down to dinner with us each night too! Something he didn’t get to do very often when he had to commute to the city because Little A ate dinner before he got home on a normal day. As much as COVID-19 sucks (and boy does it right now feel like a rollercoaster still), this was time with Little A that we were so lucky to have. To have the ability to watch him grow each day when we would have otherwise been at work is a small gift from this shitty situation. He has grown so much before our eyes in these last 6 months and continues to surprise us all each day! Every day is a fun adventure with Little A! 

     

       Like everybody right now, we are still figuring out what September is going to bring. I am still not sure if I am remotely teaching from home for most of the semester or not.  Jeff will be working from home for the foreseeable future. Grandma is as always an amazing support system and will fill in when we need her. Little A is most likely going to school 3 days a week for 3 hours. We felt comfortable with their plan during the last Zoom call and will find out more this week. As anxious as I am about it, I know that we can’t give him the important social skills he needs at this point at home with just Grandma. She is a miracle worker and a great preschool teacher for him, but she can’t give him what other two-year olds can.  He will have speech two days a week still--most likely over Zoom, but that somewhat depends on what his therapist needs to do based on her own kids’ schedules. Look out for another update in the Fall to find out if Little A went to school, how that is going and what our life in this crazy time looks like. 

Book Review (Not really): Normal by Nathaniel & Magdalena Newman

This is not really a book review, as much as just personal feelings as I read the book. I would never be critical of someone else’s journey. The book Normal is a real life story written by a 14 year old with Treacher Collins Syndrome and his mom with the help of the author of Wonder. The boy Nathaniel and his family’s story was featured in a 20/20 Special that along with the book Wonder helped bring more light to TCS and craniofacial differences. At first I did not want to read it and thought why do I need to hear their story when I have been living a life with a child with TCS for 2 years now.  My husband though was begging to get the book and read it.  I had a gift card to Barnes and Nobles, and agreed to get the book.  It took a few days until I could emotionally get in the right mindset to read the book.  Once I started it, I couldn’t put it down and finished it in a few days.  There were a few parts that I felt I was reading my own thoughts on the pages and other parts that made me grateful for Little A’s journey.  Nathaniel was born a lot more severe than Little A; had trouble breathing from the start and had many, many more surgeries.  Nathaniel was not born at NYU, but they were transferred there for the help of the craniofacial team. There were two people they talked about from that team that we also met with at our time in the hospital. NP Pat, is like mission control of the craniofacial team and organizes meetings with the doctors and commands many of the everyday operations. She was the one that after a meeting about Little A’s feeding tube, hugged me and reminded me that as a new mommy I need to take care of myself too and it is ok to take a physical and emotional break away from the NICU for a day. That it doesn’t make you a bad mommy, and in fact is quite the opposite.  You can’t take care of someone in need if you are not well yourself.  Speech Therapist Shelley, is the other name we read in the book and remember our exact meeting with her too! It was quite similar to the Newman’s meeting.  Shelley is another face (no pun intended) of the craniofacial team. After a doctor suspected that Little A had treacher collins, Shelley came to our room to congratulate us on becoming parents, give us a little gift and let us know that we are not alone.  It was weird reading the book and knowing the exact people they were talking about and how similar our journeys with TCS started off.  

As I write this though,  a  quote comes to mind that I heard many times as a special education teacher of students with autism--”When you meet someone with autism, you have met 1 person with autism.”  Meaning every person is different and has a different journey.  There are things you can learn from other people’s stories that may help you through your journey, but it won’t be exactly the same.  Reading this book has helped me in some ways, and gives me an enormous amount of confidence that Little A is going to lead a “normal” happy life.  The following quote from the mom in  the book was like someone read thoughts from my mind and wrote it down on the page.  I read it over and over and then went to my husband tear eyed and simply stated “She gets it...she found the words for my feelings.”  She stated “When I tell you how difficult it was in the beginning, I want to be clear about something: The biggest reason I was so upset by Nathaniel’s birth was because I had no idea what was coming. How he looked and the hurdles he faced were something I could accept and love, but the shock was gigantic. When life takes a sudden unexpected turn, we are asked to show what we are made of. It took me time to find my balance. That can be true in so  many ways in life.”  This! I don’t have many words to explain this quote or know if it needs to be explained.  I loved Little A at first sight and knew I always would love this little boy, but when he was sent to the NICU and then doctors and nurses were throwing around acronyms and words, shock took over.  There were times I allowed myself to be upset that things were not going as planned. Then there comes a time when you just dig deep down, lean on your partner, family and friends and find the strength that you need!  We are so happy that Little A is our child and feel like the luckiest parents in the world.  Although our start to parenthood wasn’t easy, it has shaped who we are as parents and people in general.  It has made us realize that we are made up of a lot of love and strength and can get through anything together.  

The next quote that really stood out to me was written by Nathaniel himself. “It is weird for me to write this book, about what I’ve been through, when I don’t want people to think about what I’ve been through. We like to categorize people. That’s how Wonder helped people  understand me. ‘Oh, there’s a kid like Auggie.’ But I think all of us have parts of our identity that we’d prefer people to see through. You notice how I look? Fine. You have a question or two about it? Sure, okay. But after that, I’d  like us to move on, so we can see if we like to play the same games or talk about the same things.”  Whenever I am talking to someone new about Little A and they don’t know what TCS is, the book/movie Wonder is my go to too. It is an easy reference if they have read it or seen it and is usually followed by “the severity of it is a spectrum and Little A is not nearly as severe as Auggie”  As a teacher, a parent and human being, this quote really speaks to me because no one should be judged based on how they look.  I always worry about how Little A is going to be treated once he is in school.  Once you get past his tiny ears/hearing aids, Little A is a smart, funny, kind two year old.  He likes to do the same things as any other two year old.  I know it is human nature to put people in a box and categorize them, but then we might be missing out on knowing other things about that person that makes them special.  I don’t mind telling people that the headband Little A wears holds his hearing aids on, but his BAHAs don’t define him.  I didn’t mind explaining about the feeding tube, but that never defined him. Right now Little A is only two and kids don’t care about looks (at least yet). They may touch his hearing aids out of curiosity and we just say those are his ears and not to touch and then off they go together to play.  I know in the future Little A will have no problem answering questions about his appearance, and like Nathaniel he will just want to go play a game or talk about other things.   As Nathaniel also said in the book “Treacher Collins doesn’t define me. What defines us all is how we face the world we've been given. I’m Nathaniel. I’m not normal, and neither are you.”  We have already started to make sure that Little A knows he can do anything, be anyone as long as he is true to himself. He is Little A, an amazing, strong little boy, who is going to do wonderful things in the future!

                                                             

P.S. Read the book! If you are an educator it is a great book to read along with the book Wonder

"Typical" A

Wednesday, January 29, 2020 was a very bittersweet day.  It was time for Little A's IFSP (like an IEP meeting for early intervention). This was the day that he was officially discharged from physical therapy. Meaning Little A can physically do everything a "typical" child his age can do. Let's be real - this kid does not sit still. He climbs on things, runs around and oh yeah loves the opportunity to hold your hand and go up and down the stairs all day.  This was a day we were waiting for… to say Little A may hear in a different way but other than that he is just like everyone else! We are so excited to have the news he doesn't need PT anymore. The bitter part is that we loved his therapist. She not only showed how much she cared for Little A and helped him reach so many goals and milestones, but she helped me in ways too. While she worked with Little A, she would always talk and check in and see how I was doing. She didn't always realize that some of our conversations were very encouraging to me.  She cheered him along with us - even things that didn't have to do with PT. One conversation will always stick out in my mind and is one we have gone back to a lot whenever we are getting a bit frustrated with where we are at with Little A. We told her that Little A wasn't using his pincher grip yet. She simply asked one question "Have you given him the chance to try by putting the food on his tray?" Our answer was no because at the time we didn't think about it. She said "I'm not worried about it, I'm sure after a few tries he will get it". She was right.  When given the chance to try and practice he was able to quickly learn to use that pincher grip. When it came to Little A eating foods besides purees, we were nervous. For some reason the question "have you given him the chance to try?" popped into my head. I quickly realized it doesn't matter if we are scared about what might happen, if we don't give him the chance to try how will he learn. This gave us the courage to just keep pushing forward. So even though we are sad we won't have weekly chats with his therapist anymore, we are excited for how far Little A has come from a physical standpoint. When we brought him home, he was a skinny, tiny boy who could barely turn his head to the left side (he favored his right). Now, he is the little big boy who doesn't have enough time in his day to explore the world. Little A continues to see a speech therapist and audiologist.  He has about 30 words that we have counted so far, but seems each day he is saying a new one. They aren't always perfectly said (usually missing the first consonant sound) but they are definitely recognizable. Just last weekend he said "pizza" in a clear enough way that his uncle and cousins stopped in their tracks because they were happily surprised to hear it from him. 🍕 Some other words he loves to say are "chocolate" "cookie" "cheese" Aspen" (the dogs name) "up" "come" "dada" and "mama" plus many more. Little A loves music and at night we often hear him singing songs to his stuffed animals. This week we also got good news from the Audiologist, Dr. Ben. Little A is not completely deaf without wearing his hearing aids. He pulled up the audio graph and took the time to explain to me what we were looking at (I'll do my best to explain haha). It showed that without his hearing aids on, Little A's hearing is in the 60-65 decibel range.  This is still like 40ish decibels below the normal hearing range. What does that mean for Little A though? It means without his BAHAs we sound like the adults in Charlie Brown. He doesn't hear consonant sounds, only vowel sounds. But at the decibel level, he can understand intonations. That means he would know if you were singing him a song for example even without the BAHAs on. Now with his BAHAs on I don't remember the decibel range but I think it was 30/40ish. I know it is still below the normal range because even though technology is awesome, it can't make his hearing perfect. Plus it can change as he grows and the bones change. Testing the decibels with the BAHAs on shows that the nerve that sends the sound information to his brain is working as well as it should be. So basically, the lack of ear canals is like a wall blocking some decibels of sound to get in. The BAHAs help get around that by sending sound directly to the nerves by vibrating bones. Dr. Ben was very pleased with the testing we did that day. We continue to see him every other month to make frequency adjustments to the BAHAs.  Dr. Ben even calls Little A his favorite BAHA-wearing man. With such caring therapists and audiologist, Little A will continue to grow beyond our expectations and doing more "typical" things. #unstoppableA

Mantra: Unstoppable

When I first started this blog--two posts in--and still very emotional, I was talking to A-wonderous friend Abby a few days after New Years 2019.  Every year she creates herself a little mantra page in a book. She writes the word and decorates the page along with three definitions. I really wanted to do it too, so Abby helped me pick out the word "unstoppable". I never got around to starting a notebook and making a pretty page or anything. To be honest, until a more recent conversation when Abby asked me when I was going to write more posts because my small following was asking, I hadn't even thought about my mantra unstoppable. Even though it is February 1, 2020, better late than never.  Now I'm not sure if UNSTOPPABLE is more fitting for me or Little A. At the time we chose, Abby told me it fit because I am supermom. Like anyone else, I have good and bad days and don't always feel super - I just try my best. Plus, I cannot take all the credit for what this little boy can do. Did I give him opportunities to learn and practice? Yes! Did I push him and show him not to give up? Yes! I also showed him sometimes, to have the strength to keep going, you need to lean on people you trust. But in the end, I'm not the one who learned the skills - Little A did. I'm not the one who, not only met goals, but surpassed them (sooner than expected) - Little A did.  In 2019, Little A was UNSTOPPABLE! We wanted him to drink a few ounces...he would drink the whole bottle. We wanted him to just drink the bottle for 1 feeding...he drank his bottle all day. We just wanted him to eat a few bites of baby puree...he ate it all. Unstoppable A eats what he wants when he wants it. Unstoppable A has some signs and about 30 not perfect, but understandable words (I say about because everyday I feel like I am surprised to hear a new one). Like any 20 month old, he has his tantrums and needs to be reminded he does have better, more effective ways to communicate. If Little A doesn't have the word YET to tell us what he wants, he has learned to take your hand and say "come" so he can show you. According to Google, unstoppable means "impossible to stop". I would definitely say Little A had an unstoppable 2019 and because of that I was an unstoppable Mama.  I learned I have the strength and heart to support this little boy in any way I can. I learned to try, even if I'm afraid to fail, because that is the unstoppable way. This unstoppable mama and son have a pretty good track record going that shows together we will meet our goals. For now, unstoppable still feels like a powerful word to me. One that, when I feel like maybe I can't keep going, will help remind me that we haven't let anything stop us in the past, so we won't in the future. #UNSTOPPABLE