Friday, October 3, 2014

Day 3 of 31 for 21: A Day in the Life (school version...)

So, today I filled in for John Michael's aide, Sara. Luckily, it was Friday and only a half day! Overall, we had a good morning and positive experience.

First thing every morning, John Michael has a daily job of Messenger with his class buddy, Lucas, to deliver mail to the office. That all went without a hitch and it was great to see him so independent. There were only a couple times throughout the day that he needed some correcting, including the 2nd half of the Mass and during his story reading time. His 6th Grade and 8th Grade buddies, Carson and Casey, are fantastic with him! They take him to Mass where he sits between them, and they do their best to keep him on track for the hour long Mass. I sat behind them and only on a couple occasions during the 2nd half did I need to encourage him to kneel or stand at the appropriate time. He sang the Mass parts he knew, shook hands during the Sign of Peace and sang all the songs he knew. Looking around, I could see many fidgety kids, so in comparison, John Michael did very well.

We went back to the classroom for his spelling test and reading test. I've been so impressed with his spelling and sounding out words this year! We don't even practice at home because he is so tired after a long school day and then picking up Anna from high school, that he rarely does more than a quick page of homework. Today he got 8 or 9 out of 12 spelling words correct! I sat with him at a table at the back of the room and slowed the pace for him to allow him to finish writing before the next word was read. I am also excited with his writing ability this year. His letters are much smoother and more legible and his writing is speeding up. For the reading test, the teacher read a sentence from their story of the week and he would have to circle the appropriate word to complete the sentence. He did that just fine... There was also some reading comprehension related to the story. Since I didn't know the story, I don't know how well he did.

They were excused to mid-morning recess for their snack break and it was nice to see him interact with other kids. They came back to the classroom for story time, which is where his hand started to wander and bother another boy. I pulled him away for a little bit and let him return when he said he was ready after about 10 minutes. After stories, they went to the gym where the priest gave a blessing of the animals for St. Francis' Feast Day. He enjoyed petting the cats and dogs, hamster and rabbit. There was even a pig :-) It was quite chaotic and noisy, but everyone had fun. They headed back to the classroom for a quiet coloring page and he did that unassisted while I sat in the back. I only sat with him briefly to snap a couple photos for this post!

So that was that… I would say he had a very positive morning. He definitely has grown and matured since last year and I'm thrilled that he is part of this wonderful environment. Throughout his day, big kids say hi to him and want high-fives. He doesn't always oblige, but it is wonderful how much he is cared for at this school!

Thursday, October 2, 2014

Day 2 of 31 for 21: Who does John Michael look like?

Day 2: 31 for 21...

Down syndrome is a condition -- a set of symptoms and features common among people with Down syndrome (and yes, the word "syndrome" is lowercase in the US and Canada)... Your child is *your* child -- more like his or her parents, siblings and other close relatives than anybody else. These two facts make your child a distinct individual -- a person who will grow to have a unique personality and capabilities. No one can tell you who or what your child will become. No one can or should even try to predict. It is just so for all children -- all we can say for sure is that you have a beautiful baby, a child of God... who is not a mistake or an accident, for He makes no mistakes. (paraphrased and embellished from NDSC's expectant parent guide...)

I can say that John Michael most resembles Anna in the family... they have the same hair color and texture, similar face shape and eye color, but John Michael has very soft hands and Anna has strong, lean hands from piano. John Michael also has the characteristic "almond shaped" eyes and flat nose bridge, smaller fingers and toes and a sandal gap between his toes... Other than that, he looks all Crumley... a complete amalgamation of his parents and resembling his sibs in various ways... John Michael and Anna have a very strong and loving bond between them. Greta is the most patient and fun for John Michael... she teaches him to dance and sing and she has always been a mini-therapist to him having carefully watched his early intervention therapists over his first 3 years... Luke is the best playmate and I can't imagine John Michael not having Luke to play with and battle with. They have a very strong, caring bond and they are very competitive with each other this year, since Luke is now in TK at the same school as JM (2 classes apart). When I ask JM how to spell "Mom", Luke yells "M-O-M" from the backseat. John Michael will then yell back, "NO LUKE! I can do it!" Finally, Nic and John Michael have a very unique and strong bond as well. John Michael adores and idolizes Nic and gets very sad when "Bruller" (brother) isn't home. Nic is the one who takes him to the fish hatchery with the bike trailer and rough houses with him. I would say John Michael is extremely blessed to have his sibs, but they are also extremely blessed to have John Michael and I LOVE the compassion and caring I'm seeing in my kids towards people with physical or intellectual disabilities. And for that, I'm eternally grateful...

Have a blessed day!

Wednesday, October 1, 2014

DAY 1 of 31 for 21: Happy?

OCTOBER 1 marks the beginning of Down Syndrome Awareness Month...
My goal is to post a fact or share a story surrounding Ds or John Michael each day (maybe more!)

FACT: People with Down syndrome are NOT happy all the time...

I know... I post a LOT of smiley photos of John Michael, but that's cuz it makes ME feel good and I love his smile. In reality, he has a huge range of emotions each day from STUBBORN (he can put the stubbornest person to shame ;-))... to ANGRY at Luke for grabbing a toy... to LOVING when he first wakes up and finds me still keeping cozy under the sheets... to PROUD when he gets something that he's been working on... to MEAN (occasionally) when none of the other emotions seem to make sense and out of the blue he might push or hit or say something that isn't kind usually to get attention or because he's bothered... to COMPASSIONATE when someone is hurt and he wants to give a gentle hand or encouraging word or grab an ice pack... and of course, HAPPY because the joy he feels when he's happy is pretty high and it makes everyone else around him happy. ALL of these and more make up John Michael. He is definitely NOT happy all the time, and his emotions run higher and lower than most, but I love him just the same as all my other kids... I challenge you take time to get to know him or someone with Down syndrome this month. Support and nice words are great... but really spending time and talking with someone with Ds is the only way you'll feel what I feel... He's pretty amazing and I KNOW his extra chromosome was placed there to bring greater joy and resilience and compassion to our family and those around us. (Thanks for reading ;-))

Saturday, June 14, 2014

He Did It! Recap of Fully Included Kindergarten...

I KNOW! I promised to blog more consistently, and, well, somehow a school year has passed!

It's been a whirlwind year of firsts for John Michael... most importantly, he has successfully completed a year of fully included Kindergarten in our kids' Catholic School and is the first student with Down syndrome at the school. On the day of his Kindergarten promotion, I literally felt like I could exhale for the first time in months. All the emotions... the awesome moments and the kick-in-your-gut raw days instantly behind us and I had a good little cry sigh of relief!

The year started off with John Michael un-aided and we took a "let's see how this works" approach. It became clear within the first week or two that an aide would be necessary to help him stay on task, give individualized attention to understand how to do a worksheet, to help with initiating play on the playground, playing appropriately, give extra time when writing or doing math or at learning centers which required more patience and time to complete a task, etc...

My head spun as I now had to hire someone to help John Michael succeed. In a private school, the family typically provides the aide since we opted out of the public school system. We felt strongly that John Michael should attend the same school as all his siblings and to grow up in a nurturing Catholic environment where faith was interwoven in every aspect of school day. I advertised on Craigslist and, looking for a qualified person with a great personality. After a few mis-fits and a few weeks of frustration and prayer, we found Sara... John Michael bonded with her immediately at the park where we met her and we could tell within 30 minutes that she would be a great fit. She is a breath of fresh air, patient, kind, compassionate, caring, positive and coachable... willing to do what it takes to help our little man succeed. It's been a win-win, because the principal, teachers and the kids in the class love her.

There are so many aspects of his school year I could write on, and I could spin it to be ultra-positive, but I'll opt for pardon the free flow writing... I also hope this isn't so long that I lose you!! Please leave a comment to let me know you're there! A little positive reinforcement will help keep me writing LOL.

STRENGTHS: While all kids with Down syndrome develop uniquely and have different strengths and challenges, John Michael's strengths are his verbal skills and physical strength. At the start of the year, he had a hard time with fine motor skills, such as scissor cutting and using enough pressure to write his name with a pencil. He gets weekly Occupational Therapy to help strengthen his core and work on fine motor. He's done a fantastic job this year and can cut rectangles, circles and triangles fairly well. Organic shapes, where a lot of turning is required, is a bit harder and he's working on that. He seems to enjoy Math (often a struggle for kids with Ds, but maybe he inherited my Math gene :-)). Now, he can cut out equations, match correct simple addition or subtraction answers to a picture, glue and color on his worksheet all independently. As for writing, what a difference a year makes! You can see by this "before and after" example how his name writing has developed... He started the year by writing JOHN in all caps. By year's end, he writes JOHN MICHAEL with upper and lower mixed all on his own!! He can write all of his uppercase letters independently, including most lowercase as well. His number writing is also improving tremendously, with 2's and 5's being the hardest to write legibly, but they are coming along great.

John Michael's speech is very good and he is mostly understood by his peers and teachers. Sometimes he speaks too quickly, but he is also very willing to slow down, try again and correct his pronunciation, so I added "articulation" as a goal to his Speech Therapy goals. With his personality, confidence and ability to perform, I can see him being a self-advocate speaker or a musician/actor some day and articulation will be key for him to be understood. I'm so proud of him!! Musically speaking, he is also great at matching my pitch and has a range of about one octave. :-)

CHALLENGES: Our biggest challenge this year has been his behavior and is a huge reason why a one to one aide is necessary for him. He's a bright, engaged kid who loves to learn, which includes picking up language and "bad words" heard from other kids. In our home, the "S" word (stupid) isn't allowed... yet John Michael developed a habit of calling people stupid... adults, students, teachers, parents... anyone's fair game. He tells me a boy in his class calls him stupid. I pray that's not the case... Then in true Kindergarten "age-appropriate-yet-annoying" behavior, he uses lots of "potty words"... ad nauseum!!! Girls tend to ignore him, but boys will laugh and encourage him, so it continues... Problem is that his little brother, Luke, who just turned 4, hears it, laughs, mimics him or tattles on him, which re-enforces the behavior... He has also had trouble this year with pushing kids or kicking them if they were within reach... blowing raspberries, which are very wet, and he would get in trouble for spitting... I keep reminding myself... "This too shall pass", and then something new will pop up and challenge us.

SOCIAL: John Michael has a few friends in the class, mostly girls and a couple boys who will play with him at recess. He is also very comfortable playing by himself. He is well-known and liked by most of the student body which goes from Transitional Kindergarten through 8th Grade. It's heart-warming to see him comfortably approaching 7th and 8th Grade boys to play basketball! When passing kids in the hall, he gets high 5's or hugs from kids, too. After school, at pickup, I often find him chatting in a group with big kids. They love him, but I would like to see him developing bonds with peers of his own age. That has been a bit challenging, and while he has been invited to some birthday parties, he has not been asked for playdates. Having a large family has its bonuses in terms of never running out of playmates, but it makes it more difficult to plan playdates as well... I also wonder if parents are a little nervous to ask. I'm praying that his behavior will continue to improve and kids will want to spend time with him and include him in their social activities. He often talks of wanting a "sleepover", but I'm so not ready for that yet... :-)

COMING UP... Next school year will bring many exciting things. When I try to imagine 1st Grade, I sometimes start to feel that ache in my heart and pressure in my head... Fear of the unknown... I have so many questions... What will 1st Grade be like? Will the teacher embrace him the way his Kindergarten teacher and aide did? Will she be patient with him and willing to modify his work and accommodate a different learning style or mode? Will she be open to alternate methods, like using the iPad? Will I have to hold her hand through this brave new world as we navigate the next year together? I'm pleased to say that his one to one aide, Sara, will stay with him next year! I'm also grateful to the dozen or so Catholic moms from all over the country that I met this past year who are blazing the trail with me or have already been on the path for a few years and encourage me and fuel my passion for full inclusion. I absolutely LOVE the flexibility we have with our Private School Plan, and do my best to block out the question "Is the grass really greener on the other side?" (meaning the public school option)

We have had so many amazing moments this past year... the Thanksgiving Feast, his participation in the Christmas Pageant, his writing and math skills (reading remains a challenge, but we've seen much improvement), the Jogathon, Kindergarten Promotion Mass (with a huge smile, he brought up the Gifts with 2 classmates), and many more great moments. Parents who thanked me for having JM at our school... A principal who approached us when JM was 12 months old and invited us to consider enrolling JM when he was old enough to attend... His wonderful teacher and aide, who reminded me all year how amazed they were at how well he was doing and that he continually surprised them with his abilities... So many blessings, too many to count! JM is a very sweet boy, compassionate and often the first one to be concerned when a student is hurt. He loves to sing, dance, learn Spanish, play basketball, and just be one of the kids. I don't think he sees himself as different from his peers and I think most of his peers see him just as John Michael... as one of their own. I will keep praying for those relationships to develop as the kids grow and mature. And will pray for an amazing year in 1st Grade!!