Best Toy Ever...

When Nicolas found out John Michael had Down syndrome, he was most concerned about John Michael not being able to play Legos, ball, trains, etc, with him.



Looking back, we didn't know how John Michael would develop. The medical information available suggested he would be delayed at everything and that he would have all kinds of medical issues. John Michael has taught us to be patient and that he would do all the things Nic was hoping he'd do, just at his own pace.

Fast forward 3 years...

in previous posts, I've written about how John Michael loves to play with balls, kicking, throwing and learning to "theth" (catch). I've also posted on how he loves to play with Legos and build towers and he's starting to build out a bit, too, not just stacking.

This year...


we bought John Michael a train table (not that our living room has room for it!) and brought down the track and trains, mostly Thomas the Tank Engine and friends, from the attic that Nicolas and Anna used to play with.

I can't believe how excited he is -- it's hard to pry him away from his train table! He is having a blast watching the two motorized engines go round and round and attaching extra engines or tenders until there are so many that the engine stalls out or crashes. We also have some cool bridges, tunnels, and accessories to add to the fun. I really shouldn't have bought him anything else. I think this is it for him.



Nic just got home and is now playing with him. I love how this one thing will give them yet one more fun thing to do together. One more reminder that our kids with Down syndrome are "More Alike Than Different."

The Gift of Time

Christmas is almost here!

It's a time of joy and yet, every year, I get trapped by the culture and try hard to pull myself out of the trap before we celebrate the blessed birth of our lord, Jesus Christ. 

20 more days til Christmas, 8 more days til Christmas, buy 1 get one free, best deal of the season, don't miss out, 4 days til Christmas, free express shipping with a purchase of $100 or more, 50% from 12am to 6am... 

STOP IT ALREADY!

Who doesn't feel stress and pressure to buy the perfect gift, decorate the perfect tree, wrap the gifts as if Martha Stewart was their personal coach, and bake 6 dozen different Christmas cookies to give to all our friends?  Then there's the pressure to buy gifts for everyone, including the mailman, newspaper delivery lady, hair stylist, teachers, cleaning people, etc, etc etc...

I AM NOT A SCROOGE!



But, it can be overwhelming even to those of us who try to be somewhat "counter-cultural" during Christmas overdrive.  It sure doesn't seem like our economy is still sluggish after the 2007 crash when I see how many people are on the roads heading to the malls and standing in long lines to buy STUFF.

So yesterday we SLOWED DOWN... and I gave the kids

"THE GIFT OF TIME..."

my time.

No TV.

No Internet/Facebook/Email checking.

Just my time and look what happened?

I taught the girls how to make sugar cookies, roll out dough, cut out with cookie cutters, bake until lightly golden, and make some killer tie-dye style icing for the girls to get creative.

This has been one of the best 2 hours I've spent all season.

Earlier the same day, I had a little tea party with John Michael and Greta.

and watching Greta teach John Michael how to be a sweet Joseph.  I had to laugh... they used the arm covers off of my couch and recliner for head pieces...  So creative and so sweet.  This is what it's about... nevermind the mess that they made.  This is what it's all about.

 Today, I spent 2 1/2 hours with Nic... shopping, going to lunch, and the library together.  It really has been good for us to ssssssllllllllllllllloooooooooooooowwwwwwwwww  down.

Even if you only have a small amount of time to give, kids will thrive when they have your uninterrupted attention. 

NO CELL PHONES, NO CHECKING EMAIL, NO FACEBOOK, and NO TEXTING...

Try it... you might like it  :-)

Merry Christmas from John Michael and his family...

PEACE!

Crumley Photo Book 2010 -- 200th POST!!!

Click here to view this photo book larger

I can hardly believe it!  This is my 200th post since I started blogging back in the summer of 2008.  A lot has changed since then... Monkey Musings now has 100 followers (I LOVE when you leave comment love!), we added a new family member, Luke, last June, John Michael started preschool the first week of December, and my 13 year old is 3 inches taller than me.  Craziness! 

Thank you for making this ride more fun by reading and commenting. If you do have a child with Down syndrome, then I pray my words have somehow helped you, encouraged you, inspired you, or affirmed how awesome our kids with Ds are.  If you don't have a child or loved one with Down syndrome, then I hope my words have helped to educate you.  I appreciate everyone who takes the time to read our blog, and especially to those who let me know they're out there.  I count so many of my blogging, cyber buddies as friends.  I hope to meet many of you at the NDSC Convention in San Antonio, TX in 2011.  I can't wait!  Until then, have a blessed Christmas and a grace-filled, peaceful New Year!

God Bless!

First week of preschool...

My big 3 year old ready for his first day of preschool!

I felt so bad that I didn't have a "proper" backpack for him (I ordered one online) so he had this huge backpack strapped on with nothing but 7 diapers and a pack of wipes in it and the poor boy could hardly hold it up.  It was pretty funny.  He was determined to carry it, though.

Daddy saying, "Bye Bye."   I can only imagine what was going through his mind at that point...

His teacher said he had a good first day.  There were some tears off and on, which is to be expected, but he played well with other kids, sat on the rug and listened, participated in activities, had lunch with the kids and even sat on the potty.  He was very happy to see me and Luke, and promptly fell asleep in the car.

I'm sure it's been a little stressful for John Michael with this huge change in his routine, meeting new faces and being away from home for 3 1/2 hours each morning. 

But, it's also been stressful for me. 

John Michael is my 4th child to go off to preschool, but my first to not be able to communicate what he did at school, what he ate, what he played with, who his friends are, etc.  I can ask him if he learned about dinosaurs and he'd probably say "Yah" even if he didn't.  If you hadn't guessed yet, I am a very involved mom... I care about what my kids are learning and doing in school and want to help reinforce it at home.   So when a friend asked me on Facebook what was his favorite thing to do at preschool, I got sad.  I didn't know... plus he's been taking a bus home this week Monday through Wednesday, so I didn't have that communication with the teacher.

Fast forward one week.  Today was Day 5 of preschool.  I picked him up so I could talk to the teacher.  Teacher Karen thanked me for letting him come to her class.  She said he's doing very well and he's such a joy to have!  She sent me a photo on Wednesday of John Michael playing with a little girl he calls "Lula" and another boy who is visually impaired.  The three of them were playing with blocks at a table... that is so cool!  I think "Lula" will take good care of him... like a sister.

At pickup, I also asked the teacher what he likes to do and she said play with blocks, Playdough (gingerbread scented dough this week), and play with the dollhouse (Greta's influence on him).  His speech teacher loves him and said he's doing very well.  She said he talks about his baby brother, Luke, a lot.  He's putting the ending consonant on "boat" which is also good.  And she's impressed by how well he sits on his special spot on the rug and listens.  She's going to implement a Picture Exchange Communication System (PECS) for him to help with his communication.  Sometimes, a picture is worth... well, you know...  It may even prompt him to say the word.  He also had adaptive PE today and Tuesday.  I haven't met the teacher yet, but I heard that John Michael had fun jumping today.

When I walked in the door today, he was with a group of kids talking with the teacher.  He saw me, shouted "Mom!" and pointed and ran as fast as he could to give me a hug.  It was so sweet.  You should see him run... it's still pretty awkward and you think he's going to fall any second, but he didn't.  I go t the hug and he turned and went right back to the kids.  Then he showed me "The Snowman" book that he likes.  It's without words, which are pretty cool books where you make up the story.  We'll have to check that out at the library.  Needless to say, he's had a great first week.

John Michael's first official preschool art project.  I'm sure it's the first of many, many projects to come and I LOVE IT!

(On a side note... it's not been totally stressful for me... I've gotten most of my Christmas shopping done this week since I only have Luke with me now.  This is definitely one of the benefits of preschool, too!!!)

Being thankful...

I hope you enjoyed your Thanksgiving with family and friends. This was the first year that our family celebrated Thanksgiving alone, just the seven of us. While we missed being with our extended family, there were pluses to staying home this year as well, such as taking a nice long walk while the turkey was cooking and not traveling in the cold weather with a baby and 4 other kids packed like sardines in our Honda minivan.

Anna (11) and Greta (5 1/2) spent most of Thanksgiving morning coloring and making homemade decorations for the house and table.  I love the creativity that flows from Anna.  Greta seems to be following in big sister's footsteps, too...

Anna's list of what The Crumley Family is thankful for...

God, Diversity, Birthday, Love, Courage, Peace, Plants, Hope, Life, Warm Bed, Animals, Loving Family, Faith, A House, Friends, Free Will

A simple reminder... this should be our mantra every day of the year...

She also decided to translate "Thanksgiving" into 5 different languages... Italian, German, Spanish, Romanian and French.

A native American girl holds slips of paper of what we're thankful for.  We had fun with this.  Luke was thankful for warm milk and John Michael's scribbles indicated he was thankful for EVERYthing.

Finally, she made placecards for the dinner table, which we decorated nicely with candles, gold chargers and glass plates.  It was a Thanksgiving to remember. 

Finally, we gave thanks that John Michael came home from the hospital at 8 days old on Thanksgiving Day 2007.  That was the best Thanksgiving gift ever.  Our Thanksgiving baby is now 3 and starting preschool this week.  I can't believe it!!!

Peace and Blessings... from our home to yours...

John Michael's first IEP... and turning 3!!!

Behold... John Michael at age 3!

Happy 3rd Birthday

to my most cuddly, loving, good-natured, awesome

Super Chromo Boy!

This boy seriously ROCKS that extra chromosome!

So much has happened since my last blog post!

On Monday, November 8th, we had John Michael's first IEP team meeting. I had spent months preparing for it by going to an IEP training seminar, transition workshop, one-on-one parent/peer counseling for information and ideas, got help and tips from my blogging friends, visited some preschool sites and prayed for a good fit for him.

Backing up a bit, the transition meeting in September was the first step and went well.  We had his therapists (ST, OT, and teacher), service coordinator, and school district representative all at our house.  I served Starbucks scones and coffee (not required, but just nice...) and I showed a slide show I'd made of John Michael's first 3 years. I'd also prepared a parent report with photos, my thoughts on John Michael and what he means to our family, a run-down on his strengths and abilities, areas where I have concerns and he needs help, and finally, what I want for John Michael in the future. It was a lengthy 5 or 6 pages long. Doug also wrote a very meaningful letter (one-page... guys can say it in less words :-) ). The letter and parent report were to help in the fact that decisions were being made about John Michael and the school district hadn't had the benefit of really knowing him.

Shortly after the transition meeting, JM's assessments were scheduled at a local preschool site where I met with the inclusion teacher, speech therapist, adaptive PE teacher and school psychologist. I was asked many, many questions about John Michael while he had his play-based assessments in the same room. He did very well. You never know how your child will react in a new environment with new faces, but he shined :-)

A couple weeks before the IEP meeting, JM and I were given the opportunity to visit the 3 school sites that had full inclusion classrooms. The classes all offer breakfast in the morning and lunch before they go home, served "family-style" where they learn to socialize around the "dinner table". Each of the classes has 20 students, 5 of whom have some sort of special need and are mainstreamed into the class. Each of the sites had at least one child with Ds, one actually had 3 kids, 2 of whom we knew!

The 2nd school site we visited is where we both felt the most comfortable. He had a great time on the playground, he painted a masterpiece for me, sat down for storytime, and met a little girl who I know will take good care of him at school. She reminded me of a younger Greta, who was very nurturing to John Michael. I love that! We also really liked the speech therapist at that site and the adaptive PE teacher is a man, which will be a nice change for him.

The actual IEP team meeting went very smoothly, although it lasted a solid 3 hours! My dear friend, Lisa Lindsey (Sheridan's mom), was our most awesome note-taker, typing away on her laptop while the IEP was going. Besides Doug, Lisa and I, others in attendance were the inclusion teacher, preschool teacher, speech therapist of new school, adaptive PE teacher, school psychologist, our infant program speech therapist, service coordinator and school district representative.

I brought homemade cranberry bread and pumpkin bread and a box of Starbucks coffee. :-)

Again, not necessary, but very much appreciated.

Each person who did an assessment on John Michael gave their report (which I'd requested and received a few days prior to the IEP meeting to be prepared...)

John Michael was recommended for a full inclusion program.

The following are John Michael’s IEP Goals for November 2010- November 2011"  (I am including them since many of our buddies are approaching 3 and having their first IEPs.  Keep in mind that IEPs are "Individual" for reason and these particular goals are written specifically for John Michael.  This is just in case anyone would like to see how they are written or for some ideas.  Each goal is broken down into two smaller steps which I didn't include here.  If he meets his goals before next year, new goals will be written.  Words in italics are my comments.)

Self-Help: Within one year, given a regular toileting schedule, student will pull down and up his pants, sit on the toilet for 1 minute 80% of the time. He already can sit on the toilet for 1 minute, but will need help with pulling down and up pants.

School Behavior: Within 1 year, given materials and a teacher directive, student will use the materials appropriately and stay at the activity for 6 to 7 minutes 80% of the time. He is interested in many different activities – this addresses focus.

Pre-Academic: Within 1 year, given manipulatives and a directive, student will give “just one” “one more” “two” and “all” 80% of the time. Right now he doesn’t get the concept of “one” and will give you “all” when asked for “one” of something.

Pre-Academic #2: Within one year, given Playdough, student will roll a ball, a snake and cut out a cookie cutter 80% of the time. Pre-fine motor, builds muscles and strength in hands and fingers.

Expressive Communication: Given objects, pictures, or situations, John Michael will produce 2-word sentences with appropriate use of simple pronouns, verbs, and prepositions 80% of the time. He speaks up to 4 word combinations with minimal use of pronouns, verbs, and prepositions.  Two nights ago, he said, "Where are you, Mom?" (prompted by Anna) and I totally understood him!

Receptive Comprehension: Given minimal prompting from staff with an auditory directive with objects or pictures, JM will follow a 2-step directive accurately 80% of the time. He currently follows 1-step directives and retains one essential element in a sentence.

Articulation: Given visual and auditory stimulation, JM will produce initial and final consonants in CVC combinations accurately 80% of the time. He usually drops the ending consonant and produces a CV or CVCV sound combination.

Gross Motor: Within one year given practice sessions involving a tricycle, JM will be able to pedal a tricycle 5 feet without assistance for 3 consecutive sessions. JM can put two feet on pedals.

Gross Motor #2: Within one year given activities relating to jumping, JM will be able to jump 5 consecutive times on the mini-jogger with spotting from the teacher 80% of the time. JM attempts to jump but only lifts one foot at a time.

This post took more brain cells than I can spare right now, so you can see why I haven't kept up with my blog!   

Last Sunday, John Michael turned 3 and we celebrated very simply by having a birthday donut.  He blew out 2 of 3 candles and we spent the day playing and having our Christmas photos taken... So, I"ll leave you with this image of my handsome 3 year old!

Feel free to email me if you have any questions about our IEP.

IEP Goal: Sit on toilet for 1 minute

This work of art is titled: "It's a Guy Thing..."
Photograph by John Michael's Daddy

Two days ago, we had John Michael's IEP team meeting. It went very smoothly and after 3 solid hours, we both signed the IEP and the wheels have been set in motion. I promise I will blog about the IEP details very soon, but for now... just wanted to share that he's already working on one of his IEP goals...

Sit on toilet for 1 minute.

Done.

John Michael's interest in sitting on the toilet began last night, prompted by him lifting the toilet lid and pulling up his shirt. Up to now, he has cried and fussed at the slighest suggestion of sitting on the big potty. I asked if he wanted to take off his diaper and he said, "yes." I propped him up and he sat for about 15 seconds. Twice today he did the same and each time he sat a little longer, the last time about a minute.

This evening he tried again... this time with Daddy.  He still hasn't actually "gone" on the potty, but he sat for over a minute, enjoying his book and Binky.  I thought it was sweet that the book he chose is called My Friend Has Down Syndrome.  It's about some school-aged kids going to camp and one girl becomes friends with a girl who has Ds. We enjoy reading it along with our other books on kids who have Ds.

So there you have it... we have begun potty training...  Stay tuned...

I'm going blind... to Ds.

OK, not in a literal sense.  But, figuratively speaking, I'm becoming blind to recognizing the features of Down syndrome in children... at least in photos.  Let me try to explain...

(John Michael and Luke on a walk with Mom to Starbucks!)

Back in June, I posted about "Seeing Down syndrome" in John Michael.  I do recognize he has features that are common in some people with Ds, but more than anything, I just see John Michael.  It's the same with his local buddies as well as his cyber buddies that we've only come to know via blogs.  I honestly don't see Ds in them.  I mean, their features don't jump out at me and say, "Look, I have Ds."  I don't mean to offend anyone here, and I realize I'm writing this in a totally awkward way that's not flowing, but here's what I mean...

Yesterday, Greta brought home a little booklet about how God made us all and the image shows a girl at the bottom of the page holding out her arms as if she's lifting the world and on the outside edge of the world are many different children from various parts of the world.  Greta (age 5) says to me, "Mom, that girl has Down syndrome like John Michael."  I looked at the girl and asked Greta to explain, because I didn't "see it".  She said the girl's eyes were like John Michael's (meaning almond-shaped and the epicanthal folds under her eyes were noticeable).  I still wasn't sure.  I saw a beautiful, blond-haired girl with blue eyes and a big smile.  I needed to get another opinion.  I asked Anna, my 11 year old.  "Oh, yeah, Mom, she totally has Ds."  Really?  And, finally, my husband, Doug, chimed in that he could tell by her "square smile" and her small thumbs (her fingers weren't visible). 

(My view of JM on the way home... LOVE THAT SMILE!)

That whole exchange really baffled me.  It made me realize that I'm starting to go blind to differences and see the child for who they are, regardless of diagnosis.  Maybe if I'd met the girl in person I would have noticed that she had Ds because of her speech or maybe the way she moved, I don't know...  maybe not.  Anyway, I just wanted to share that.  Just curious, has anyone else had a similar experience?

He's gonna be just fine... Looking at preschools...

 John Michael will be 3 in a few weeks.  We've been checking out a couple different preschool options in our school district last week and this week.  It's been very helpful for me to picture him in a full inclusion classroom with 15 typically developing kids and 5 kids with special needs.  Both classes I've seen each have a little girl with Down syndrome and some other kids with special needs. 

On one playground, there were many trikes like the one above.  John Michael can't yet pedal, but he's trying.  But the coolest thing was that a few trikes had an extra seat on the back, like a fixed trailer, and one little boy gave John Michael a ride all around the playground.  It made me so happy to see the kids fully included and accepted.  A win-win for both sides.

The second school I visited had a really neat, small playground.  John Michael really blossomed yesterday.  When the teacher turned on the slippery fish song, he tried to keep up.  It went too fast, but he did his best.  He also liked sitting next to the kids and interacting with them.

I had a chance to talk with both teachers while the kids were on the playground.  Both have backgrounds in special ed, both thought he was really cute and were very encouraging. 

John Michael's IEP meeting is in 2 weeks.  We visit one more school tomorrow.  Unfortunately, all the school options are a good 20 minutes away.  While I'd envisioned a private preschool setting for John Michael where his 3 older sibs went, I think this is a great start for him since he will need extra help at first.  He will also have speech and adaptive PE onsight.  Adaptive PE will help with stair climbing and building strength for trike riding, but doesn't take away from playing with the other kids on the playground.  I'm starting to feel a bit more at ease with the whole school thing. 

I'd love to hear other peoples' experiences with starting preschool for their child with Ds.

Uh oh, Oh no, YAY!

John Michael's speech continues to take off... branching into 2 word and sometimes 3 word phrases, like "Hi, Luke", "blue block" or "love you".  He is a parrot and often copies the last word in a sentence or picks up expressions. 

This morning, while feeding Luke, I quietly observed John Michael building towers with Legos.  He built the tower by himself (not the bottom, larger structure) and was quite chatty.  He would say, "Yay" when a block or section fit.  He'd say, "Oh, no" or "Uh oh" when blocks were tipping or fall off and would say, "fit" when the blocks didn't fit well.


Here he's standing proud of his accomplishment.  That was as high as he could reach without the whole thing falling over.  He stayed with this activity for about 15 minutes, which is pretty good for self-directed play.  If Greta were here, they probably would've played for about 30 minutes.

Eventually, he branched off to playing with the Lego animals, cars, trucks and people.  But the whole time, I noticed how his expressive language is growing.

Some other expressions he frequently uses are: "Whoa!" for when he catches himself falling or bumping into something; "Oops! (soop)" for when something goes wrong; "Bonk" for when he bonks into something; "Wow!" when something's exciting or cool; and, "Ow!" for when he's hurt.  This has really come in handy lately since he can now show me where he is hurt.  It used to be a guessing game with lots of tears.

This was taken last week and he built it all on his own.

 I just love Legos for all the things you can do with them. 

ArtBeast, New Friends and Spaghetti Factory, OH MY!!

Last Friday, a blogging buddy, Darlena, came up to Sacramento to meet some of us.  I've been following Darlena's blog for over a year.  She has a beautiful family, but we especially love reading about her darling son, Brayden.

Isn't he a cutie?!?!

We first met at the ever-cool ArtBeast for some music, art and creative play.  John Michael looked quite at home on the drums.

A John Michael masterpiece. 
We love his painting so much that Doug wants to make greeting cards out of it.  :-)

John Michael loves to give his friends hugs.  Miss Gabby doesn't seem to mind.  Isn't she precious?!?!

At Spaghetti Factory, John Michael and Brayden took over the waiting room inside the old train station.  If you look carefully, you can see the front door is cracked open.  John Michael and Brayden discovered that if they pushed a bit, they would be able to escape. 
Let's just say these two will not be left alone -- who knows what kind of trouble they'd get into!

I didn't get everyone's photo, but I did get this cute one of John Michael feeding Sofia.  Her brother, Joaquin was in the stroller and Sheridan came later to join us just for dinner.

Just the moms... me, Darlena, Debbie (she came to say hi), Sheree and Jennifer.

And finally, the evening ended with a nice bowl of ice cream.  Besides meeting up with his friends, this was for sure John Michael's favorite part!

Brown Bear, Brown Bear... Book Embellishing Party

Last Friday night, I hosted the Ds Sisterhood for a Brown Bear, Brown Bear book embellishing party.  We had 14 moms and one nana, plus a few adorable kids.  The book is called Brown Bear, Brown Bear, What Do You See? by Bill Martin, Jr. and artwork by one of my favorite artists, Eric Carle.

I borrowed the embellishing idea from Bessie Barth, Music Therapist and Director of Music to Grow On.  She writes, "This was my original idea especially since I had some clients with visual impairments that needed something to experience the book.  I also found that it was more engaging for many of my clients and made it multi-sensory and easier to follow along."  Two of her interns took the idea and really tried to make the book true to textures related to the animals as best they could.

John Michael loves to feel the different textures.  We love the book because of the sing-songy text.  For each page, we sign and say the color and animal name and then make the associated animal sound.  For goldfish, we usually call it orange fish and smack our lips.  It's very funny to watch JM do it! 

 

It was a tight squeeze in my kitchen, but we managed to craft and enjoy appetizers and wine.

 

When was the last time you played with glue?

 

The hot glue station...

 

Some moms even made two books that night!

Joey, Eva and Sofia played while their mamas crafted.  My daughter, Anna, did a great job entertaining them. 

We finished the evening watching Deedah.  "Deedah is an honest, touching and often humorous account of a seven-year old girl’s relationship with her six-year old brother, who has Down syndrome. The 26-minute film, shot in documentary news style, follows the siblings through their daily lives."

While watching the film, I saw glimpses of Greta (5) and John Michael (almost 3) a few years down the road.  Greta loves John Michael without condition.  She nurtures him, cares for him, plays with him, dances with him, chases him, encourages and motivates him and is an advocate for him to other kids at her school.  He calls her "Deh duh" for Greta and we sometimes call her that, too, just for fun.  This is one of those films that should be seen by every school-aged child, as well as doctors, teachers and other parents. 

I've included several more photos from our book embellishing.  I'm hoping to contact Eric Carle to show him how cool his artwork looks in 3D!

Red bird has red feathers that fly off the page!

The blue horse has yarn hair.  We used hot glue for this. 

Here, we added a suede collar and rhinestone.

The teacher's glasses were made out of blue chenille stems.

The bottom row of children have googly eyes glued on.