Tuesday, November 14, 2017

John Michael is 10 Today!!

10 years ago today, you shook me to the core!! I was 40 and having a baby at 40 wasn’t in my plans, but God knew what I needed.

I knew something was different the moment I held you, but never in my wildest dreams did I expect the doctor to say, “It looks like your son has Down syndrome.”

You were easy to deliver, but you were somehow more floppy, didn’t cry with gusto like Nic, Anna and Greta when they were born and when you turned purple, I just assumed you were cold...

When they whisked you away I became concerned and that’s when the doctor told me and Daddy. We were speechless. Daddy was strong. I was scared, sad and afraid. It took me a while to catch my breath. Leaving the hospital without you tore me up. I pumped milk and fed you several times a day. It was surreal. You fought to breathe on your own, you had small holes in your heart and you were too tired to finish a tiny 2 oz bottle of milk. But just 8 days later, on Thanksgiving Day, we brought you home from the hospital and have loved and cared for you ever since!! What a blessing you are!!

John Michael, you redefined the word PERFECT in my heart and in our family. Perfection is what God gave us... we just needed to grow and change to better understand. Today, 10 years later, all I see is perfection. Perfectly imperfect. My life, our family, your siblings, relatives and friends have all been touched by you and I’M. SO. GRATEFUL. to be your mom!

Happy DOUBLE DIGITS, John Michael!! You’ve been asking me 364 days when is it going to be your birthday so you can be 10! Well, Buddy, it’s here... and we are going to celebrate you BIG!!!

Love you to the moon and back, my sweet angel cake!!

THEN... (2008)


Sunday, April 5, 2015

Easter 2015 - John Michael Update!

Easter 2015

How has it been 6 months since my last post?

John Michael continues to mature and grow. In so many ways, he's doing very well... in school he's beginning to read aloud in class which has been a struggle for him up to now. He has a growing list of sight words that he knows and has been doing great on his spelling tests all year, averaging about 9 out of 12 correct each week. His writing ability and speed of writing his name and other letters has really improved this year, including legibility. He also writes his numbers correctly and quickly without any thought. On a rare occasion he even reads for me, and when he does, I'm thrilled!

Homework continues to be a challenge for him. His teacher sends home a homework package on Mondays and the kids have 3 pages per night, all due on Friday. John Michael averages 1 to 2 pages a night at most. Some nights he does none. So by week's end, he has about 7 out of 12 pages completed. I'm not a fan of homework at this age. I just want him to be able to come home, have a snack and play basketball or baseball outside with Luke and Greta while I prep dinner. John Michael works so hard at school all day to perform at his absolute best that by the time he gets home, he's completely wiped out. 3 of 5 days he has Speech Therapy and/or Occupational Therapy off-site at a public school and 2 days after school, he has 2 more hours of Adaptive Skills training. There really isn't anything left in him, so I don't even ask him to look at homework on those days unless homework is part of his AST goals for that day.

John Michael's verbal skills are amazing! He has complex sentences and can tell me his needs and parts of his school day (when he feels like sharing!) Unfortunately, he has also picked up some rude behaviors and words that are hard to break... If he doesn't want to answer someone speaking to him (anyone!), he often says, "whatever" and turns away from them. Sometimes he tells us to "be quiet". He loves attention and often sings at the top of his lungs in the car or in the kitchen and wants everyone to stop and watch him. Sometimes he does it just because I need to talk with someone. He can also reach the garage door opener button in our garage and goes out to sit on the sidewalk by himself. Yesterday was a gardening day and we knew the boys were playing together. When I saw Luke alone, I asked where John Michael was. I went to the garage and heard crying. He was UNDER my Suburban! I screamed (not the best response, but he shocked me half to death!) and pulled him out. He looked scared because he couldn't get out on his own. I don't even want to think what COULD have happened. He continues to make dangerous decisions, not realizing the harm he could be putting himself into. This boy needs to be watched constantly and as soon as it gets quiet in my house, I know something's up!

I often lament at how hard it is to keep my house tidy with 5 active kids. It seems like ages ago that I prided myself with a clean and tidy house. Then again, I only had 2 kids, or maybe 3 at the time. With the birth of John Michael, something shifted in me and my priorities changed. My Martha Stewart tendencies were pushed under my kitchen rug along with my decorating and organizational skills and I've learned to be more patient and chill (I'm far from perfect, though!) Now, when I need to clear my head, I go for a run on our nature trails. Hearing the birds and the turkeys, seeing the occasional deer or coyote, watching the hawks circling above the grassy trails along the river, and seeing other runners, cyclists and horseback riders cross my path makes me feel grounded and at peace. I walk in the house and I'm ready to take on whatever is next on my endless list of to-do's before picking up the kids.

So much has changed these past 6 months. It's impossible to recap, but I look forward to what lies ahead. Every day is a new beginning. Even if the day before was filled with behavior challenges, spills and sibling squabbles, it all resets by the next morning. I'm happy to snuggle with John Michael, who climbs into our bed most mornings around 6:15am to cuddle for a few moments before we get up for school. For me, while I'm inconsistent, this blog continues to be my online account of our journey having a child with Down syndrome and I only hope it helps another family in a similar situation. I'm grateful for all the wonderful Ds mom friends that continue to pave the way and encourage me in our trail off the beaten path with an inclusive Catholic school education, helping me navigate the confusing world of supplements, medications, therapies and supportive aid. This road would be so much more difficult to navigate without the support of The Sisterhood and the dear friends I've made along the way. 7 years later and I can still say I wouldn't change John Michael and take away his Ds. It's how he was made and it's just a part of him. I would change the learning challenges and the increased risk of getting Alzheimer's at an early age. Hopefully the research that is ongoing will be beneficial to John Michael before it's too late. We will definitely continue to help him be the best he can be and give him every opportunity to grow and learn. One great lesson I've learned is to never set a limit on what you think your child can do. For John Michael, the sky's the limit and only he can let us know when a goal is not reasonable and we need to reset our expectations. Until then, we will shoot for the stars and if he misses, he can still land on the moon. :-)

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 Care.com, 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 real...so 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!!

Friday, August 23, 2013

First Week of Kindergarten -- Fully Included...

I had the chance to speak to John Michael's Kindergarten class today about Down syndrome (I don't think I actually used the term Down syndrome), how everyone is different, and that differences are what make the world such a great place. I also read the book, "My Friend Isabelle" by Eliza Woloson to the class. The kids were fantastic! Very quiet and attentive as they sat on the colored rug and I sat in the teacher's rocking chair.

I asked if anyone had questions, but at this age, they just wanted to tell me about their own siblings or friends... It was cute! One boy said his big brother is faster than him, but his feet were bigger. Another boy said that he is faster than his baby sister, who is 2 years old. Haha. Then one girl, right in front, said, "John Michael taught me how to dance." That totally warmed my heart. I'm not so sure what he taught her, but he does love to shake his booty and dance. I was also thrilled to know that he felt comfortable enough to do that at school...

I said my good-byes and the teacher sent an email with the letter (you can click to enlarge), as well as send home a hard-copy of the letter.

What's so amazing is that John Michael is the first boy with Down syndrome to attend this Catholic school. He has older siblings who've graduated from there and one sister who is in 3rd grade this year. The community loves and supports him and I often hear great things about John Michael. Sometimes, he gets in trouble, too. He was sent to the office today for kicking kids on the rug. He had a time out, but couldn't resist scooting his chair closer so he could continue to kick. Sigh. His teacher sent him to the office for some time away and she said he had a great day the rest of the day. Yay!

So, he made it through his first week of Catholic school, fully included without an aide. We are looking for a part time aide to support him in the classroom as things get more difficult for him. But for now, I will mark his first week as a HUGE SUCCESS!!!

Within 2 hours of the letter going out via email, I already had 4 lovely responses from parents in the classroom thanking me for taking the time to write the letter and share about John Michael, opening up dialogue right away. It's a win-win. The letter isn't something I wrote on my own, though, so I want to give credit where credit is due. A huge THANK YOU to Gillian Marchenko, author and mom to Polly with Ds, for sharing the letter on her blog for all of us to copy and use. http://www.gillianmarchenko.com/inrtoducing-your-kid-to-the-class-school-take-home-sheet-for-child-with-down-syndrome/

And if you check out her website and blog, there some great links for you to read on the sidebar as well, like 10 Things Not to Say to a New Parent of a Child with Down syndrome. :-) http://www.gillianmarchenko.com/ten-things-not-to-say-to-a-new-parent-of-a-child-with-down-syndrome/

Before I left, I asked the kids to be John Michael's buddies on campus. Everyone wants friends and he might need a little help sometimes. At least half the class said they would (that's a great start!) These kids will grow up with John Michael and Ds will be "no big deal" to them. Two boys, fraternal twins, have already told me that they want to be John Michael's friends. Soooo sweet. I feel so blessed!!

Stick around awhile and you'll see I'm all about educating parents who wouldn't otherwise know these things. Because 6 years ago, I was that parent... and no one took time to share these tips with me... so I'm paying it forward.

Have an awesome day!

Monday, July 22, 2013

Twinkle Twinkle, Little Star (John Michael and Luke duet)

Naptime and bedtime are sometimes challenging, but often they're magical around here... the boys LOVE to sing, cuddle and sing lullabies and I get the sweetest moments with my little guys when it's almost time to hit the pillow.  When Luke was a baby, he had a terrible time falling asleep, so I would wrap him snugly, cradle him in my arms and softly sing or hum "Rock-a-bye Baby" over and over until he fell asleep.  I was at my wit's end and that was the best I could manage ;-)  Well, it eventually started working and he would fall asleep within a few verses.  Today at age 3 he still requests the song and I can see his eyes getting heavy when I begin to sing it softly and slowly.  Kinda like a Pavlovian response to sleep, but it works!  

These days, the boys love to sing along.  One of my most requested songs is to sing "Stay Awake" from Mary Poppins.  I love it!  "Stay awake, don't rest your head.  Don't lie down upon your bed.  You're not sleepy as you seem.  Stay awake don't nod and dream..."  The boys often join in and sing with me (which is counterproductive to getting them to rest, but their stall tactic is also very sweet).  Other songs include, "Hush little baby, don't say a word... Mama's gonna buy you a mockingbird..."  John Michael knows EVERY. SINGLE. VERSE so this goes on for a while.  And we always end with Twinkle Twinkle, Little Star.  So here's my little stars performing their own rendition at Luke's naptime today.  It's also the first time Luke has gotten in the spotlight on his own and sung a song on video.  John Michael joins him for the 2nd time through.  Enjoy :-)  

I'll post more about the NDSC Convention and my take-aways later...  there's a great app you're going to love!



Saturday, July 20, 2013

Ds Parenting 101 and Handwriting Without Tears Workshops

This morning I attended two excellent workshops.

The first one was Ds Parenting 101: The Straight Scoop with Tools and Rules by Natalie Hale. It was based on her new book, "Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier". Everything she covered, particularly non-compliance, was applicable to John Michael and understanding oppositional behaviors. Yes, my sweet, angelic "happy all the time" child has quite a few stubborn traits and behaviors that are challenging us. I know, hard to believe LOL, since most of what I post has a positive spin on Ds.

John Michael is a very sweet, smart lovable boy, but he can be very non-compliant at the simplest requests. He knows the rules... Each morning he has to go potty, eat breakfast and get dressed for school. Some mornings he comes in our room at 6:15 for some cuddle time before our day begins. He always tells me, "Mommy, I love you so much!" I cherish these tender moments, but as soon as it's time to get up, he practically runs away from me to avoid his morning routine. Sometimes he does it all willingly and other times I have to assist every step of the way. We've worked with a behavior therapist, established a rewards system and still, it doesn't always work.

I think this new book will be great for giving practical examples of how to motivate your child. I like what the author said... You have to use humor and be permissive with their feelings, acknowledging when he doesn't want to do something and then give him a choice of two things he can do. He feels in control and you still win. I love her light-hearted approach yet she's full of wisdom from parenting a child, now a man, with Ds, ADD and oppositional behavior disorder. Looking forward to it!


The second workshop was called Scribble, Color, Draw: Key Readiness Skills Essential for Handwriting Success presented by Diane Eldridge, RN, COTA.

I loved this class! It was completely hands on and she taught us how to help our kids gain more strength for handwriting, how to write their letters in the most logical order and creating letters from simple wooden shapes, starting with the big line at the top. We talked about eye-hand coordination for coloring, writing and eventually drawing a figure of themselves. She showed an example of a boy drawing a stick figure of himself with just a head and sticks for legs. This is totally how John Michael creates a person, which is about a 3 yr old level. After doing a fun exercise on the floor by creating a "Mat Man" from the wooden shapes and setting it to song, the boy was able to draw a head, body, arms, legs, face and a belly button. I'm excited to try this with John Michael and Luke and see a before and after.

She also recommends breaking crayons in half so they have to hold it with a proper grasp and squeezing and pinching Play Doh for hand strength. She set everything to song and made it fun and light. I think that's the "missing link", so will definitely be adding song to our learning and coloring sessions. Finally, I learned that the best way for kids to write letters is not by tracing, but by imitating. So, I would write capital letters first or a word and he imitates on the line below using simple shapes of "Big line, Little line, Big curve and Little curve". Very simple, and very easy to learn.


That's all for now. I haven't figured out how to post pics from my iPad, but will as soon as I can.

Friday, July 19, 2013

Blogging guilt and the Barney song

Oh my gosh! I'm at the National Down Syndrome Congress convention in Denver and just left the Bloggers sharing session. I don't even feel like I can call myself a blogger when I haven't touched my sadly neglected blog since November of last year! But I was motivated to go anyway, in hopes of meeting IRL (in real life) some blogging friends I've made over the past few years.

I'm soooo glad I went! Not only did I get to meet some awesome blogging moms (and a brave dad who is going to start one), but I realized that I do have something to say that others might want to hear. A couple moms said, "I've missed your posts" and another reminded me that I sent her a presentation a while back that she has used for her own son's class and she was grateful.

My lack of blogging has resulted from having a busy life with 5 kids ('nuf said) and I'm on facebook more since it's instant gratification. I also started a business last year which takes my time and quite honestly, I often feel like I don't have good enough material for a blog. Today was a good reminder that people do want to read about IEPs, inclusion, behavior issues, sibling relationships, and whatever successes we are celebrating, even if it's not "all good news". Just to be real...

Of all John Michael's strengths, I'd say speech and communication are his greatest gifts. And being a singer, I always wondered if he would ever be able to carry a tune beyond a 3 note range. I'm excited to share his latest rendition of Barney's Theme Song, "I Love You". Thanks to Linda Nargi for encouraging making me post it on my blog. I do apologize that the video may not be embedded since I'm on my iPad and don't remember how to do it, but I promise it's worth clicking and listening. My big guy, now 5 1/2, can SING!!!




Monday, November 5, 2012

John Michael's new verbal and baseball skills...

John Michael's verbal skills have kicked up yet another notch. Saturday at nap time after a busy Step Up for Down Syndrome walk, I followed him to his room to put him down for a nap. He obliged, but climbed into big brother Nic's bed, covered himself up and proudly told me, "I love Nicky's bed. It's so comfortable."

I couldn't believe it! A month ago, he might have said, "I like Nicky's bed" and that would've been the extent of it.


These are a couple examples of his spoken language growing. He's using pronouns mostly correct, stringing words together with "and" and has many sentences going up to 8 words at a time. He is also singing with much better pitch and is hitting notes in his range with better accuracy most of the time. I LOVE this being a singer. He's also quite the story-teller about a dream he frequently has. He tells me there's a bear stuck in his window. I ask, "What color is the bear?" "White." "Is it a nice bear?" "No, it's mean." "OK, should Mommy push the bear out?" "YES!"

On a not so great note, he called his sister Greta "stupid" last week. In our family, that's a pretty bad word... not that the big kids don't occasionally say it, but in general, we don't use it. Breeds a negative attitude... Well, he must've heard it somewhere because it was used in perfect context, to belittle someone. Of course, it got a big reaction out of me and in hindsight, I should've ignored it, but that's hard to do... I heard it a few more times after that and not again lately. I'm hoping it's been fazed out for a while at least.

Yesterday, he wanted to climb up onto my bed. He grabbed a footstool from the bathroom, set it at the foot of the bed and tried to climb up. He struggled a couple times and before I could offer to help, said, "Never mind." And walked out of the room.
In other exciting John Michael news... he is participating in the Learning Program on a monthly basis with homework at home. It emphasizes reading sight words, matching picture to picture, word to word and eventually picture to word. Last night he read all 8 "Going Places" words with the pictures covered up correctly. Car, Bus, Train, Motorcycle, Airplane, Boat, Bicycle... I was thrilled! Kids with Ds are such visual learners and we should've done this with him 2 years ago. Better now than later...

He is turning five 5!! in 9 days. He is becoming more willing to dress himself, often proclaiming, "I DO IT!" Awesome! He uses the potty and stays dry 95% of the time but still needs prompting to go. He can do it himself from start to finish, with handwashing included, but needs help snapping pants. He loves to help me cook, which usually means stirring something. He has an amazing baseball-throwing arm, is catching much better and is an impressive batter. I can get him to do almost anything if I promise to play 2 minutes of baseball with him. It's magical... He has little interest in kicking a soccer ball (like his 3 older sibs), but give him a ball and a bat and he lights up!

So I leave you with a short video highlighting John Michael's batting and throwing...

Tuesday, September 25, 2012

Celebrating Granny's 90th Birthday in Style

My husband, Doug's grandmother from Holland flew to the States to celebrate her 90th Birthday with us! How fortunate we are! She's a beautiful 90 year old woman, traveling alone, is still fit both mentally and physically and sharp as a tack! What a blessing for our children to experience their great-grandmother, as well as great uncles and a great aunt who also made a long journey from Alabama and Holland to surprise Granny for her 90th!

We started the evening at our house in a Hummer limo. What do you get your husband's 90 year old grandmother who really doesn't need anything? It's all about doing things that are memorable. The kids were thrilled to go in a limo! My parents (originally from Germany) joined us as well. A first for all of us!

We surprised Granny and the other Dutch relatives by having the driver knock on Doug's mom's front door. I LOVE the look of surpise on Granny's face as she began to figure out what was going on! It was priceless! Champagne and Martinelli's made the ride even more fun!

We drove to Buca di Beppo and dined in the Pope Room. Soooo fun! Now she cay say she dined with the Pope and cross another thing off her bucket list! haha...

The evening ended perfectly. Truly a memorable experience that we'll never forget.

We love you, Granny!

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Friday, September 14, 2012

John Michael -- Welcome to Catholic School TK

John Michael is attending two schools this year...

On Monday through Thursday, he attends the same inclusion preschool / Head Start program where he's been for the past 2 years already.  It's a great Inclusion program where 15 are typically developing kids and 5 have special needs of some kind.

This is the school where he gets his speech therapy (25 min, 2x/wk) and adaptive PE (25 min, 2x/wk).  It's where he learned to ride a trike, sit quietly at circle time, be a line leader, identify his written name, use the potty by himself, wash hands, eat a meal "family style" with other kids, clean his plate and push in his chair.  He also learned to sing, count, cut with scissors, use glue sticks and play cooperatively with others.

It's been a great 2 years for him.
Beginning this school year, John Michael is now attending our older kids' Catholic school.  He attends the transitional kindergarten classroom, unassisted currently.  He goes to Mass and sits with his sister, Greta, and learns to be quiet and still.  He gets to play with lots of kids in a great, loving environment (the principal was completely open arms and welcoming to us ever since John Michael was a baby!).  He is doing well, aside from a couple running (eloping) incidents and pushing other kids.  Luckily, the entire school KNOWS John Michael and think he's a little rockstar.  At snack recess, Greta (2nd grade) usually comes out to find John Michael and plays with him for 10 minutes while their schedules overlap.  I LOVE that she seeks him out! 

First Day of School

John Michael's teacher at the Catholic school hands out Behavior Bucks for good behavior. You can see he's already earning a good number of them!! NOTHING makes me happier! Really!

She also assigns nightly homework (yes, TK!) John Michael actually drew the lines from 1 to 2, 2 to 3, 3 to 4... you get the idea... and colored it in. I'm so proud of him!!

She also assigns nightly homework (yes, in TK!)  John Michael actually drew the lines from 1 to 2, 2 to 3, 3 to 4...  you get the idea... and colored it in.  I'm so proud of him!!

It really is true... our kids are more like others than different.  So true!

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Wednesday, September 12, 2012

What do you give a 90 year old?

Doug's grandmother from Holland is visiting these next 6 weeks and celebrating her 90th birthday with us this weekend.  Yes, 90th!!

She traveled alone and looks fantastic!  I can only hope to look as good when I'm her age!

So, what do you give a woman who has everything she needs and is turning 90?

I took advantage of an offer from Shutterfly to make her a nice book to take back home and remember us by.  It won't arrive until a few days after her birthday, though, so here's a sneak peek of what's to come...

Happy 90th Birthday, Granny!!  WE LOVE YOU!!!

Tuesday, July 31, 2012

Portrait Party to Raise Funds for Reece's Rainbow

          My friend, Danielle Parker, a local photographer (Danielle Parker Photography), approached me in June with a very generous idea.  Inspired by John Michael and other kids with Down syndrome, she wanted to find a way to help families who were adopting children with Ds.  So she came up with a Portrait Party idea...  20 minute sessions for $30 and Danielle would donate the entire amount, including her time over one weekend in 100 degree Sacramento heat, to Reece's Rainbow in honor of the child of our choice.  For an additional $10, families could purchase a CD of their photos. 
          The idea became popular quickly, spots filled up and 12 families took advantage of the photo sessions.  $30 for a professional photographer?  Unbelievable!!  But she wanted to make it afforable.
We raised $360 for Reece's Rainbow and the money will be split for two adopting families in the Sisterhood... The Sheffield's adopting Vinnie and The Jaco's adopting Jaxon, both boys are in eastern Europe and both have Down syndrome.
          Here are a few of our shots...  keep in mind, only 20 minutes at naptime in 100 degrees of dripping heat (yes, that's John Michael fake "crying" because he didn't want to take the photo and we had to wake up Luke to do the shoot)...


Me and my sweetie... Happy 18th Anniversary (yesterday).  If anyone had said on our wedding day we'd have 5 children, I would've said they were crazy!  Now I know who's crazy  haha.  But each one is awesome and unique and wonderfully made...

I love how the boys are looking at each other here...

"John Michael, what does Piet in Holland do?"  He wanted nothing to do with that.  Anna looks like she'd rather be in a different family :-)

My heart.  The reason I started this blog... the reason I have more friends than I can count... more sisters on this journey than I ever thought imaginable...

My spunky little man.  Full of love and the biggest hugs a mom could ask for...
Pure boy.  Pure stinker.

The is decidedly "the family photo" of choice  :-)

Brothers, bookends, biggest to smallest... 6'4" to little man...

Who doesn't love Greta!

These two melt my heart...  These boys laugh, run, play, cry, fight, push, hug, kiss, and care for each other like no other!

Need I say more?
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