3.21 World Down syndrome Day!

There are times I really really dislike Down syndrome. I hate that I have to get Gabe’s blood drawn once a year to make sure he doesn’t have leukemia. I hate that his tone is so poor that his gait is unsteady when he runs and it’s hard to keep up with friends. I hate that he gets frustrated when he stutters because he can’t get all that he wants to say out easily. I hate sleep apnea and potentially having to desensitize my kid to a CPAP mask. I hate that it takes him twice as much effort to get things down when it comes easier to a typical kid. I hate that I’m constantly taking him to therapy. I hate that I find myself getting judgy… Or maybe jealous.., of other parents when I hear them complain about having to take their kid to an extra baseball tournament b/c it’s just too busy. I hate when people judge my parenting and Gabe’s ability. I hate constantly wondering if I’m doing enough. I hate writing this and thinking that I complain too much and then feeling guilty. There are other times when I really really love Down syndrome. I love uncontrollable laughing at the silliest things. I love being greeted when I come to the door with full excitement. I love that he says I love you and gives me a kiss every night before bed. I love celebrating every success and valuing every milestone. I love the comradery in the community. I love the fact that he counts stairs when he goes up and down because that’s what kids who go to therapy do. I love that everyone is a friend. I love that other kids try harder b/c Gabe tries hard every day. I love how he senses emotions at such a deep level. I love that he changes people. I love when he says “I did it!” I love everything about Gabe. It’s hard to tell what’s a DS trait and what’s a Gabe trait b/c it’s all combined in some ways. I guess I love all things DS too then. I certainly celebrate it. The celebration is much greater than any negativity I have towards it. What I dislike is - hardship. But hardship presents itself to everyone in different ways. Maybe hardship is something to embrace as well. I actually think DS saved us. It saved us from selfishness, impatience, and being uptight. It makes us be more empathetic, congratulatory and inclusive. It helps our marriage and family grow together. It makes us better in every way. As I’ve said many times before..,never give up on Gabe! Happy Down Syndrome day! Wear those crazy socks! Guess who wanted bare feet?

Thankful

We have so much to be thankful for this year. Gabe is doing well in 3rd grade. We are working through some behavior issues though. He likes to be silly, say no, and run away from difficult things. Days are never really bad, but it is rare that he gets stars for every task he completes at school. However, the past 2 days, he has earned all of his stars and had great days. He was so proud of himself. We are continuing to work on Gabe talking more to his peers. We got in touch with a fluency specialist. She performed an assessment on Gabe and it was fascinating. She counted number of stutters or delays per syllable. He scored significant enough to qualify for services. He tends to stutter or have trouble planning out his words when he is having conversations versus when it is scripted (reading a book). We start this specific therapy next week. I am so hopeful. Gabe wants to interact more with peers and hopefully this will give him the tools to be more confident and conversational. He has so much in his head he wants to share...he just needs to get it all out. He has such wonderful classmates and friends who show him patience and understanding and just love him to pieces. Gabe also started a dance class called Remarkable Movements at Dance Expressions Theatre. It's PT disguised as dance. He loves it. He loves checking himself out in the mirror...it's hilarious. Alyssa is rocking 1st grade...I never had a doubt that she would. she was student of the month for November. She loves swimming, gymnastics, all things sparkly, magic tricks, jokes, and science experiments. She is so fun. She just turned 7. I love my kids and how they are growing and who they are becoming. This Thanksgiving, I am thankful for: - my family - my friends who don't judge me when it takes days for me to call them back - parents/Grandparents who come to the rescue - a profession that challenges me, exhausts me, inspires me, and gives back to me in so many ways - my health - my family's health - my marriage (11 years strong) - my local Down syndrome community who "gets it" and offers wonderful resources and advice - all of you Justin says he is thankful b/c he has gotten everything he has ever wanted...great kids, great family, a great wife, and a company I built. Alyssa wants me to add that she is thankful for family, shelter, donuts, pets, community helpers, and TV Gabe says he is thankful for "you".

Gabe turns 9

Today is Gabe's 9th birthday. Here is an update on all things Gabe: School: Gabe will be going into 3rd grade next month. He loves reading, being silly, and playing with friends. His reading fluency has much improved. Math is challenging with money and time. He knows the names of the different coins and how much they are worth. Adding different coins together is hard for him. Time is going okay. He can tell you the time when the big hand is on the 12, or 6, but if it's on the 1, he'll say 1, not :05. It is complicated if you think about it. Practice, practice, practice. Gabe made friends with kids in his class year. He's really interacting with peers, not just side by side and it's so great to see. Speech: Gabe's articulation is improving. Others are understanding him well, not just our family. We are working on same and different concepts. We are also working on word problems and him explaining why with different pictures or readings. Gabe still scratches his throat, making a crocking sound for oral stim. It's usually if he's hungry, tired, or anxious. He is aware of it though, b/c if we ask him to stop, he does for a short period. He still often quotes TV shows or songs, but we mainly just ignore it. They say be happy he is making sounds and putting the sentences together and he'll learn more of the social norms as he progresses. Occupational Therapy: Gabe is currently working on handwriting. His letters have greatly improved. He is able to write smaller and much clearer when he wants to. We are still working on hand strength for buttons, snaps, and zippers. PT: Gabe's core strength continues to be our key focus. How do you make planks fun? He'll do crab walks, crawl, one leg balancing, etc. He is able to ascend and descend stairs with alternating feet when he has a handhold. His gait twists some and is very broad b/c of his lack of core strength. He still likes to bump down the stairs at our house, but will stay on his feet sometimes with reminders. Gabe still prefers to sit down a lot. It's less effort which I get, but whenever he's hot, or been playing for awhile, he demands to sit. Behavior: Gabe continues to improve in social settings. He's getting less overwhelmed with crowded areas. He also takes turns with other kids, even strangers, and ventures off to explore different parks, play centers libraries, etc. He loves routine and will participate well in the structure of his routine. When things are hard for him, or demanded of him, we often get "no". We track it and often after 2-3 requests, he'll comply, but somethings he just turns dead weight on if he doesn't want to do it. General compliance tends to always be the theme. Token charts to earn a reward are helpful. Making things more difficult as a punishment (picking up blocks, walking into the other room and back, etc) tend to resent him. Health: Gabe's sleep apnea is now just mild. He is sleeping well and it is being treated with Singulair and Flonase. Next sleep study is December. For ENT, Gabe passed a hearing test without a tube in place. This is huge. Those tiny ear canals are growing! Gabe is still suppose to wear glasses. He doesn't like things on his face. He'll sometimes wear them when reading or watching TV. We go back to the eye doctor next month. I may try to get him lighter weight frames to see if they are more comfortable for him. As for Cardiology, Gabe's mitral valve leak remains mild and unchanged. They continue to monitor him with an EKG and ECHO annually. Feeding: We continue to see feeding clinic about every 6 months. Gabe is eating well. His variety is great and he eats what we eat at all meals. He has some texture issues with slimy and gummy things (grapes, blueberries, gummies), but overall does great. He's drinking at least 30 oz/day of milk and water. He still has his feeding tube...ugh, but the good news is, we don't often use it. We may give him a couple ounces of water/week so he doesn't get constipated, or to help him out if it's super hot outside, but that's it. He's eating all his calories. What we really need to work more on is self feeding. He'll bring the fork to his mouth, but he needs to start stabbing the food. Also, if we are eating somewhere other than our house, we sometimes have to just feed him bites to get food in him b/c it's not his routine and he's less willing to help out. He eats great when there is a show on or some type of distraction, but we always try to get him to take a few bites independently to earn that reward. His weight has maintained since dropping the pediasure, however I'm unsure if he's really gained. He seems taller though. We go back to feeding clinic in September. The marathon of feeding is no fun, but progress is being made. Self Help: Gabe is able to use the restroom independently, pulling his shorts up and down, flushing toilet, and washing hands...when he wants to. He will do all of this when he really has to go. Getting him to go pro-actively b/c you are leaving the house, or should try before going here or there is when he often throws fits. He hasn't really had any accidents for us, but I want him to go before it becomes an emergency b/c with his tone being poor, he can't hold if for long. Gabe is dressing/undressing himself pretty well. He takes awhile, so if we're hurrying, he needs help, but when there is time, he can get his underwear, shorts, and shirt on independently. He needs help putting on socks, orthos, shoes, but can take them all off okay. Gabe lets us brush his teeth. He'll hold it in his mouth for a few seconds. I count this as a win since he use to bee so orally averse. Gabe is starting to get in and out of the car independently and pull his seat belt over and help fasten. Things Gabe loves: Toy Story, Books (trying to advance past his love of Clifford), screen time (he loves leap pad and TV), the park, jamming to music, bowling, the zoo/aquarium, chucky cheese, pop a shot, playing catch, yelling boohoohahaha to scare you, and saying "ta-da" when he's done something he thinks is fabulous. Stay gold buddy. Thank you for making me a mommy 9 years ago. You have taught us patience, determination, how to be supportive, and unconditional love. Thanks for bringing so much light and goodness into this world. "I would not change you for the world, but I will change the world for you."

2nd grade - the year Gabe made friends

Gabe had an overall very positive 2nd grade year. His reading fluency has greatly improved. He wants to read books to us instead of us read to him. We are working on reading comprehension at the end of the book, not after a single page. He is able to identify 3 and 4 digit numbers. He is learning basic time and beginning to learn about money. He can identify all the coins and tell us how many cents each is worth, but adding different cent values is very hard for him. Gabe's handwriting has greatly improved...it is no longer very large, but when given boxes, he can write a letter within the box. He is also learning to type and use a calculator. He is able to use the restroom independently now at school and is beginning to carry his lunch tray through the cafeteria to the table. He gets his supplies ready and wears his own backpack, even though it's as big as him. We are continuing to work on transitions. When moving from room to room or subject to subject, Gabe often gets distracted or refuses because there is a demand. Also, when work is hard for him, he will sometimes shut down when things get difficult. I sometimes have to remind myself that his stubbornness is the exact trait that got him through very fragile times in the past and this is just him presenting his strong will in a different way - even when it challenges our patience and his advancement. The most positive thing that has happened this year is that Gabe has made friends. Gabe always did side by side play. As a toddler, when kids got rougher and more physical, Gabe was still wobbly on his feet, delayed with his language, and sensitive to loud noises - peers became a little scary to him. He has always interacted well to Alyssa (she demanded it) and says 10 word sentences to us, but with anyone else, he generally regresses. This year, there were some very patient and special kids in Gabe's class who included him, praised him, met him on his level, and made him feel safe. He's still kind of quiet around them, but he smiles, laughs, cheers them on, and is so happy around them. It makes me so hopeful of his future relationships and general happiness. When I was pregnant with Gabe, I often worried if he would have friends...would he be invited to birthday parties? Would he have someone to go to the movies with? Would he have plans on the weekend? After this year, I know he definitely will. Never give up on Gabe. (I intentionally cropped out his friends' faces from this public blog, but the real picture is 10x more adorable.) And as for Alyssa....She such a smart, compassionate, and happy kid. She rocked kindergarten and I'm seeing her understanding and patience of all kids with different abilities shine through because of her brother's influence. 1st and 3rd grades here they come! Can't wait to enjoy this summer.

3-21

Tomorrow is World Down syndrome Day - 3 copies of the 21st chromosome 3/21. Here is an update on all things Gabe. What's Gabe into? Gabe loves reading (on his own terms). He loves playing whiffle ball, but would rather toss to you and you hit the ball. He loves his stomp rocket. He loves dogs and babies. He loves his IPAD. He loves all things Toy Story. He loves routine and schedules and rewards. He loves friends (3 in particular) at school who play with him on his level. He loves going to the park and the zoo. He loves all things silly. He loves to say NO. He loves bowling. He loves watching his dad play wii. He loves watching his sister swim and do cartwheels. He loves going to the doctor. He loves making people proud. He loves music and dancing. He loves chips and french-fries. What's Gabe not into? Talking in long conversation to kids. He's very chatty with adults, but is quiet with his peers. I'm not sure if that's b/c he recognizes the difference and is aware it's harder for him, or if he's just shy. He doesn't like loud noises, however he's gotten much better with this and will remove himself from chaotic settings. He doesn't like demands. The key is tricking Gabe into thinking he's in control. Example: Gabe, sit at the table. you need to eat your breakfast. "NO!". Better example: Gabe, what chair do you pick to sit at the table? Maybe you can steal mommy's seat and that would be so silly. "(snicker) okay!". Eating - it's getting much better though. It's still work to him, but it now just requires reminders to take a bite, not a fight over getting him to chew. Some of this is Down syndrome. Some of this is 8 year old boy. Some of this is a shy and cautious kid. You gotta love him. "While I wouldn't change you for the world, I will change the world for you".

Buddy Walk 2017

Cincinnati has the largest city-wide Buddy Walk in the country. It is always a wonderful sight seeing the large crowd, knowing that all of those people support individuals who have Down syndrome. It always warms my heart and makes me feel like Gabe's future is bright with all of this love around him. This year's theme is "the year of the parent". It's kinda silly really....I've been there every year....and, isn't that the responsibility of the parent? I know what they are getting at though. Being a parent of a child with Down syndrome, or any special need really, is harder in some ways. It takes more patience and more time. Some days are hard, but some days are wonderful. Some days his delays seem really significant, and other days, he has breakthroughs. It's quite a journey of ups and downs, but every step of the way has bettered us. Bettered us as parents, and as people. So for that, I will take this honor of year of he parent, because of the hard work I put in, but more because of the wonderful rewards I've gotten out of it. Never give up on Gabe.

Buddy Walk

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