Tuesday, November 30, 2010

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...

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Friday, November 19, 2010

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.

Wednesday, November 10, 2010

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.


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...

Wednesday, November 3, 2010

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?