Tuesday, June 30, 2009

Payton's IEP and School Placement

A couple weeks ago, we had Payton's IEP meeting. I'm not sure why, but I've never been one to get my panties in a bunch, so to speak, over IEP meetings. I'm not really sure why I don't get worked up over them, but I'm sure I will once my girls are older. We are lucky to have had an amazing teacher for Payton this past school year, who worked on much, much more than what was on the IEP. But I know we won't always be that lucky.



Here is bits and pieces of their version of Payton's present level of functioning ...

Payton demonstrates significant delays in the areas of cognitive, expressive and receptive language, and fine motor skills. Her gross motor, adaptive and social skills are within normal limits.

Payton's cognitive skills are at the 18-24 month level with scatter skills to the 30 month level. She listens attentively to stories read by adults. She requests favorite books and songs using pictures at circle time and home visits. She completes toys requiring two steps such as a cash register (coins into slots and pushing buttons) and a lock/shape box (turning key to open toy to remove shapes and putting shapes into correct openings). Payton matches objects to pictures, identical objects and like objects. She demonstrates use of common objects such as a brush, tea pot and cup. She has good pretend play skills which she initiates and includes peers to extend the play. She does not consistently sort by color.

Payton's expressive language skills are at the 12-18 month level. She will point and gesture to attract attention and to request items within view. At times she will use a combination of verbal words and signs such as signing and saying "mo" for more, signing "fish" and "please" to request more fish please at snack time. She is not consistent with her use of signs at circle time to participate with familiar songs ... she sometimes signs duck, dog, cow, train, boat and helicopter. She will verbally say "I" or "me" to request bubbles but will not spontaneously initiate bubbles. At times she will imitate bubbles with "bubu" and "boo" for book. At times she will greet adults with "hi" and "bye". She does not yet name familiar adults on sight.

Payton's receptive language skills are at the 18-24 month level with scatter skills to the 36 month level. She points to body parts on dolls. She follows two step related directions. She demonstrates verbs such as feed, bathe, throw, roll, push and pull upon request. She enjoys simple games and demonstrates an understanding of taking turns. She associates names to family members and familiar school staff. She is not yet showing an understanding of prepositions.

Payton's fine motor skills are at the 24-30 month level with scatter skills to the 36 month level. She uses refined bilateral patterns (each hand doing a different motion), she will put coins in with one hand and turn the handle with the other. She uses wrist rotation to twist lids off and to turn keys. She turns single pages of a book. She strings beads and stacks blocks. She scribbles spontaneously but does not consistently imitate horizontal or vertical lines. She is starting to close scissors to snip when given assistance with holding the scissors.


Here are Payton's new goals going into this next school year ...

Cognitive ...
During structured activities, Payton will sort by color, four different colors, four items of each color, on four occasions. Note: We are working on this and I think she will have this mastered by the time school starts.

Expressive language ...
During school and home visit activities, using her mode of communication (words, signs, pictures), Payton will name three different familiar adults on four occasions. Note: She has already accomplished this goal. She can name me, her dad and her brother and she has done it for awhile now. I guess they want her to go outside of that ... I mean I do too, but I just had to say she has technically met this goal.

Receptive language ...
During structured play opportunities, Payton will show an understanding of four different prepositions (in, on, under, on top of, beside) on four occasions. Note: I think she already knows this in a general sense, but because she hasn't consistently shown us that she knows it when prompted, it has made it on her IEP.


Fine motor ...
During structured activities, using scissors, Payton will cut a piece of four inch length paper in half on six occasions. Note: She is so close to mastering this goal, too!

Articulation ...
During direct instruction, Payton will imitate the product of bilabials (/p/, /b/ and /m/) and produce them in the context of CVC (consonant/vowel/consonant) words with 80% accuracy on three observed occasions. Note: We hate speech. LOL.

Oral motor ...
During structured activities, Payton will imitate oral motor movements which facilitate strengthening and increased movement in the lips, tongue, and increased intra-oral pressure, on three to five occasions.

Pragmatics ...
In a structured opportunity, Payton will give and receive targeted toys to a peer or adult upon request four of five times on three observed occasions. Note: Umm ... I think she can do this? Seriously, where did this goal come from?

Expressive language ...
During structured activities, Payton will request 50 desired items or activities, each on five observed occasions, utilizing her preferred mode of communication. Note: Now, this is a real goal!


This past year, Payton received six hours (two days) of classroom based services a week, in addition to a 45-minute home visit by her teacher. This next school year, she will get 15 hours (five days) of classroom based services a week, in addition to two 45-minute home visits per month. She also will be receiving 180 minutes per month of one-on-one speech therapy. Man, that was a battle to get!

I have sort of been stressed out about her school placement, as I really wanted her to attend the same school she attended this past year. That placement, however, was a specially approved placement based on my request. I requested it for logistical reasons, however more importantly because I had heard such great things about the school ... and such not so great things about the school she had originally been assigned to.

This year, I also requested that she be placed in a classroom that had typical peer modeling. Both her teacher and I actually requested it, even though you technically are not allowed to request a placement. Whatever.

So yesterday I randomly found out about Payton's placement while I was at the Child Find Office for Nika's IEP. They told me the notice had been mailed to me weeks prior, but I told them I never received anything.

Anyway ... I got my wish. Payton has been placed in a 6/6 classroom, which means there will be six kids with special needs and six typical children. Woot! The bad thing is that the classroom is at the less than desirable school ... so we will see how that goes.

But ... Mama Bear ain't scared.

Monday, June 29, 2009

Bill of Rights for Parents of Kids With Special Needs

I'm totally stealing this from Michelle, who stole it from Ellen, but it's ok because Michelle asked Ellen for permission ... and I asked did not ask Michelle for permission. Michelle, do I have your permission? Ha.

I found myself nodding my head at so many of these and just wanted to share it here too ...

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
* We have a right to trust our instincts about our kids and realize that experts don't always know best.
* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
* We have a right to choose alternative therapies for our kids.
* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
* We have a right to wonder “What if…” every so often.
* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.
* We have a right to react to people’s ignorance in whatever way we feel necessary.
* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
* We have a right to go through the grieving process and realize we may never quite be "over it." * We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
* We have a right to have yet more Pinot Grigio.
* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.
* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the butt.
* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.
* We have a right to talk about how great our kids are when people don’t get it.
* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."
* We have a right to wish that sometimes things could be easier.
* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

(Compiled by Ellen, in honor of her little boy, Max, and all of our beautiful children, on June 17, 2009.)

Three Day Recap: A Trip. A House. A Sliver.

Unfortunately, we missed Field Trip Friday this past week. Err, actually, our field trip consisted of a long drive in the car to New York. Note to self: Never, ever leave DC during rush hour on a Friday night. What could have been a 4.5 hour trip turned into a 6.5 hour trip. We discussed with Mason what we saw along the way, but mostly all he cared about was this ...

Are we there yet?

How much longer?

Are we going to be there before dark?

I remember annoying my parents with those questions when I was little. Since when do I have a kid that is old enough to do that? Geesh ... that makes me feel old.

On with the story, right?

We went up to New York ... Binghamton area, not NYC ... for my cousin's graduation party. We stayed in my aunt and uncle's guest house ... no cell phones, no computers and not even any pictures. Gasp! We had a great time hanging out with family and basically doing nothing ... just the way I like it. Ha.


I actually was born in the Binghamton area and we lived there for a short time after I was born. I have been back there only a handful of times in my life, even though I have family that lives there. This time, I decided that I wanted to see the house we lived in when I was a baby.

I'm historical like that.
So yeah, there is the house. I'm told it hasn't changed in 33 years.


They are slivers. Or splinters ... I guess it depends on your use of the English language.

Small.pieces.of.wood. In.his.hand. Yeouch.

So I mentioned we stayed in my aunt and uncle's guest house over the weekend. The house was built in 1800 and something ... so it is real old. The walls were built with wide slats of wood and these days, they are very rustic.

Rustic as in not smooth wood.

Not smooth wood as in you will get a sliver if you touch it.

Mason was trying to take off his swimsuit and lost his balance. Naturally, he put his hand out to catch himself, although he fell when he was doing it. And ran his hand down that very rustic, sliver yielding wood. And screaming ensued. And tears. And yeouches.

My poor baby.

Since his hand was wet from just spending an hour or so in the pool, I think his skin soaked the slivers right up. I got out the tweezers and a needle and went to work. While he screamed and winced. He seriously had about 50 slivers in his hand. After removing about 20, we had to take a break. His hand was completely red and raw. Many of the slivers were really deep, requiring the needle ... and that pretty much put Mason over the edge.
So this is a picture of his hand about 36 hours after it happened ... there are still a good 20 slivers in there. Mason keeps telling me his hand feels better, but I know better than that. Tomorrow I am going to try to remove more after he plays in the pool for awhile.

I'm hoping for success. Hoping. Praying.

Thursday, June 25, 2009

GI Appointment: Nika

Today I took Nika to see a GI to discuss the possibility of her having reflux. I do think she is a silent refluxer ... but I can't be sure. I talked to them about doing a scope to see if she has any damage down there ... sort of taking the proactive route.

They agreed ... so we'll get that on the books.

Weigh in ---> 25 pounds, 33 inches


My sister-in-law and I started going to Boot Camp at our local aquatic center a morning or two a week awhile ago. However, I sort of hit an exercise lull after our trip to New York and when we discussed doing Boot Camp again, I was pretty sure I'd get my a$$ handed to me had I went.

So ... I talked my sister-in-law to going rollerblading instead ... I wanted at least a week of exercise before I can hit Boot Camp again. Ha. But do people even rollerblade anymore? I used to go all the time, but that was like nine years ago. In fact, I had to get my rollerblades out to see if they needed some good ole WD-40. They didn't.

This morning we got up at 6 a.m. to head out. It took a few minutes for us to get in the rollerblading groove again ... and she'll kill me for saying this, but I'm not sure my sister-in-law ever got back in the groove? Ha.

No, I can't do that hill!

S&%$, s&%$, s&%$. F&%$, f&%$, f&%$. I'm gonna fall!

What?! There are bumps! Ahh!

Help me!

Ha ha ha ... quite possibly the funniest one hour experience of my life. Now that we are warmed up, maybe next time we can master the big hills that we avoided this time. Always remember, going flying into the grass is way worse than using your brake!

Whadduya think, Shay?

Wednesday, June 24, 2009

Choas turns to peace ...

Today started out a little rough. We had therapy and a doctor's appointment scheduled, but we were running late. After loading the kids in the car and backing up about five feet in the driveway, I decided we just were not going and that I was canceling our appointments. Ha.

So I pulled back up in the driveway, unloaded the kids and took them inside to feed them breakfast and blow dry my hair. Because we hadn't even got that far prior to leaving the house. Sigh.

Despite the heat, I decided to take the kids to a National Battlefield Park near our house that I had drove past before. I noticed it had a cool bridge and a raised wooden walkway through the woods, so I thought it would be fun to take the kids there and just let them walk on the walkway.
And ... I have been needing to get a good picture of Payton for our local Down syndrome calendar, so I dressed her up and we headed out. I didn't really think I got a good shot of her, although I did end up getting this shot ...And here is the little miss refusing to smile for me ... but looking cute anyway ...I titled this blog entry Chaos turns to peace, although our walk was less than peaceful. Mason whined because he wanted us to walk faster so he could ride his scooter. Payton whined because her shoes hurt her. Nika couldn't keep up and pouted. Mason whined because he wanted us to walk faster so he could ride his scooter. Payton kept sitting down because her feet hurt. Nika was so hot and fatigued that she had snot and saliva flowing. Mason whined because he wanted us to walk faster so he could ride his scooter. Payton needed to be carried. Nika needed to be carried. Mason whined because it was so hot. I couldn't get back to the car with my three lovely children fast enough.

But let's just try to pretend it was peaceful. Ha.

Pool Fun

It is summer. And naturally the kids want to go to the pool.But ... during the day, it is just me and the kids.Which is a little hard when it comes to pools.But we did it.
Mason can swim.Payton can swim and float.And Nika can float.Nerves? What nerves? All that and I can take pictures without having a kid drown ... I got talent. Ha.

Sunday, June 21, 2009

Water Droplets

Last night while Kyle was washing the cars, I had the hose on the mist setting and I was spraying Mason and Payton with it. The water droplets settled just so on their faces ... so I wanted to take a picture. Because I'm a dork like that.

Mason ... looking mean with his cool eyes ...
And my beautiful girl ...
Oooh, airplane!
I would have loved to have gotten a shot like this of Nika, but alas she freaks out if she gets wet. So dry she will stay.

Friday, June 19, 2009

Field Trip Friday: Clemyjontri Park

This summer, the kids and I are having Field Trip Friday every week. My initial plan was to go somewhere educational and have Mason document the things he learned, but I guess that won't happen every week ... maybe every other week? Ha.

Today we went to Clemyjontri Park. The history behind the park is that the land was donated to the county by an elderly woman, with the contingency that the park be built to accommodate children with all abilities. It received a lot of press when it was built, for that reason alone ... and the story hit home with me, for obvious reasons.

Here is some of what the park has to offer ...

This park is a place where children who use wheelchairs, walkers or braces, or who have sensory or developmental disabilities, can have a parallel playground experience of fun and exploration. At CLEMYJONTRI....

  • Ramps connect structures
  • Swings have high backs, arm rests and special safety features
  • Rubber surfacing allows wheelchairs to roll easily
  • Lowered monkey bars provide easy access
  • Equipment is designed to be sensory rich so all children can participate with peers
  • Wider openings allows easy access to play structures
Pretty cool, eh? The park itself is huge. There is also a carousel for the kids to ride on, as well as picnic space.

Today some friends of ours joined us for Field Trip Friday ... the kids had so much fun!

Payton being the monkey that she is ...
Nika exploring her territory ... she was loving it!
Mr. Cool Dude Mason ... the 2.2 seconds he stayed still ...
Our little friend, Jillian ...And her big brother, Alex ... Mason's partner in crime ...
How did I not get a picture of Hannah, Alex and Jillian's sister? Oops!

Saturday, June 13, 2009

Listen to their voice ...

I wish I could embed this video on my blog, but it won't let me. So please click here to watch this video ... it is the voice of my girls. :o)

Friday, June 12, 2009

Why Why Why?!?!?!?

Fun Summer Days

Payton loves to swing ... and she has the longest tongue ever!Our friend that we found, Prince Charming ...
The next female Nascar driver ...And finally ...
... some cute little toe gap feet ...

Wednesday, June 10, 2009

My Hotel Guest

For the sake of this blog entry, let's just refer to my house as Hotel Bethany.

I have a guest currently staying in my hotel. Never mind the fact that he lives here. Here is the royal guest lounging in his hotel room ...
He has recently taken a liking to his bedroom hotel room ... staying in his room watching television and playing. I have tried telling him that there are other parts of the house hotel that are enjoyable to visit, but this week he has preferred to remain private.

He asks for food orders room service quite often, however he has been advised that I am not his maid we don't have any waitstaff in this hotel. So he has agreed to pick his food up from the kitchen restaurant.

I just ran upstairs to check on his sisters some other guests that were napping and found this ...
I guess he is done with these dishes?


Be the Match!

From now until June 22nd you can sign up to be a bone marrow donor for FREE! By joining the registry you could potentially help save the life of someone with cancer. You can sign up through the mail. It's quick, easy and painless ... just a swab of your cheek. Please take advantage of this great opportunity to sign up for FREE today! I just did!

Tuesday, June 9, 2009

No sweat here ...

So I am pretty sure that Nika does not sweat. Now that the weather is getting really hot, I have noticed her turning really red. And this is not red as in sun burnt red, it is red as in overheating red. As soon as I bring her inside, she returns to her normal color.

I have heard that some kids with Down syndrome do not sweat, or do not sweat as much as they should. I know Payton sweats, although I'm not sure she sweats as much as the typical kid does. Alas ... it hasn't been an issue with her.

With Nika, however, we have a problem. I mean look at the picture of her ... that is not normal. This picture was taken after she played outside for maybe 30 minutes.

So you guessed it ... I need words of experience from those that are familiar with this. Guess we will be having some testing done.

Fun times.

Monday, June 8, 2009

Preschool Graduation

Mason graduated from preschool today and we are so proud of him! He has learned so much this year and we are so thankful for patient teachers that understand Mason and his crazy self.

Mason's class had a little graduation ceremony, during which they sang songs and received their diplomas. Prior to calling each child's name, his teacher described the child and showed us the child's self portrait that they made in the beginning of the year.

Here is what Mason's teacher had to say about him before he got his diploma ...
This friend is a very active learner.
He is really, really funny.
And he is also very creative in everything he does.
And he has lots of friends.

Teacher: Mason, what was your favorite thing about preschool?
Mason: Reading books.


For Mason's "graduation party", he wanted to go to McDonald's and then go play miniature golf ... so that is what we did. In attendance were Grandma Bosman, Auntie Kristie and Uncle Casey and Auntie Shay, Uncle Jeremy and Cousin Jaxson.

The kids and Ronald McDonald ... not an easy task to get these four to sit and smile ...
Uncle Jeremy wanted his turn with Ronald too ...
Mason opening graduation presents ...Nika playing in the tunnels at McDonald's ... she loved it up there and wouldn't come down!
Here we are after playing mini golf ... Casey thought he was the jolly green giant and ended up looking like he is two feet taller than the rest of us ... silly Uncle Casey!

Friday, June 5, 2009

Our happy girl ...

I took these pictures when we were in New York overlooking the city of Albany. I told Kyle to get Nika to laugh and boy did she ever. Isn't it amazing the changes she has made in the past six months?

It is amazing. She is amazing.

Monday, June 1, 2009

Quick, Little Getaway

This past weekend we took a quick, little trip to New York for my cousin's wedding. My father is one of seven children, so we have a really great time when we all get together.

Padric and Carrie tying the knot ...
Mason having fun at the wedding reception ...
We had a family picnic at a local state park. We played games ... softball, horseshoes, frisbee, softball ... ahem, what happened to my softball skills?

The state park had this city overlook ...
Here is half of the family ...
My sister and brother-in-law ...
My babies ...
Payton ... she is deep in thought ...
Mason ... he is deep in thought too ...
Nika throwing a volleyball ... go PT skills!
Kick it, Nika! Doesn't she look so dainty in this picture? So cute!
Playing with Daddy ...
"Give her a hug!"
Chicky running ... I love how she runs!
Chicky playing with Daddy ...
Kicking the ball ... go Chicky with your PT skills!
Mason playing frisbee ...
Little stinker!