What's So Funny?

Bella was talking to me the other day in her own language.  I was talking back trying to use the same language and at some point I kept talking in a higher and louder voice, until I got to this point...which was apparently hilarious.

Bella’s Preschool Experience

While I have documentation of all her preschool goals and accomplishments, I don’t have the time to go into all that detail.  So instead I will focus on her final goals and transitions from preschool to Kindergarten.

Goal #1 – Physical Therapy

By April 2014, when in various sitting positions, Bella will maintain prop sitting for 30secs, on 2 out of 3 days.

Progress 5/30/13 – Bella is able to maintain prop in sitting for 5 seconds on 2/3 days – Bella has demonstrated ability to sit up Independent with good posture for 15 seconds on one data day, most often she maintains good sitting balance for approx 5 seconds.  This is a recent IEP goal, so minimal PT data available.

Short Term goal 10/11/13 – Bella will maintain prop sitting for 10 secs, on 2 out 3 data days.

Goal #2 – Occupational Therapy/Speech Therapy

By April 2014, using a Step by Step Communicator Switch, Bella will request continuation of 3 items/activities, with 80% accuracy with no more than 5 prompts.

Past data – Bella continues to use the switch consistently for food and now has expanded her requesting to continuation of a preferred activity.  She activates the switch to request the continuation of swinging with 74% accuracy with no more than 2 prompts.

Progress 5/30/2013 – Completed – Average 72% with 2 1/2 prompts, swinging and requesting “more tickle” using her communication switch.

Goal #3 – Occupation Therapy/Feeding/Physical Therapy

By April 2014, with physical support at elbow and spoon attached to her hand, Bella will move a loaded spoon to her mouth, 8/10 opportunities.

Past data – On her most recent data day, Bella performed this skill 6 times for every 10 opportunities.  However, she demonstrates inconsistency among data days, with her March 2013 average being 3/10.

Progress 5/30/13 – 5 out of 10, Bella has had great progress this quarter.  She has started responding better to consecutive attempts at self-feeding, which is exciting to see!  Great job, Bella!

Short Term Goal 10/11/13 – Bella will move a loaded spoon to her mouth, 6/10 opportunities.

Goal #4 – Physical Therapy

By September 2013, when in various positions, Bella will maintain head in upright position, for 60 secs, on 2 out of 3 data days.

Past data- Bella’s head control is inconsistent but on an average since school started she is holding head up 13 secs.  In May 2012 she was holding head up on an average of 25 secs.

Progress 5/30/13 – No progress made – Bella continues to fluctuate with head control averaging 10 seconds, has demonstrated the ability to maintain head control for 90 seconds one time.

Short Term Goal – The goal of head control has been on Bella’s IEP for the past 4 years with no progress being made.  This goal will still be worked on, but will no longer be part of her IEP curriculum or be tested.

Summary of Present Levels of Academic Achievement and Functional Performance

Long Range Vision:  For Bella to self-feed and have more interaction with peers, adults, and toys.

Isabelle (Bella) is a 5 year, 7 month old girl who has attended the ECSE program since September 2010.  She lives at home with her parents and younger brother.

PT:  Bella still uses a KidKart wheelchair as her means of transportation.  She is dependent on adults for transfers and positioning.  She also has AFO’s that are used to provide her with support for the low tone in her ankles and feet.  Bella uses a Leekey stander parents have loaned us from home.  She also wears a Benik vest to provide some trunk support.  Bella continues to grow and head control remains unchanged.  She still periodically turns head to right and stacks head back to the left.  Tried cervical collar but she became dependent on it.  She has held her head up for up to 90 secs but on a average she is maintaining for 10 sec.  Bella continues to have very low tone throughout her body from head to toe.  We have worked more on her prop sitting when on the floor – this also works on her head control.  When in criss cross or circle sitting on the floor, support is provided at hips and occasional assist is needed to place her arms on her knees or on the floor and she is able to support herself in sitting for up to 3 secs.  Also work with Bella on her tummy; usually on a wedge so she can prop with her forearms and hold head up briefly.  Elbow splints have been used when trying to prop in prone.  When placed supine on her back on the floor she enjoys stretching out, kicking her legs, rolling to both sides, and reaching with hands.

Communication:  Bella uses the Step by Step Communicator Switch to request objects and actions.  She activates the switch (placed on the left side of her tray) to request for more food (“More please”).  The switch is also used to communicate continuation of swinging and “rough housing”.  The swing used is an adaptive, high-back, harness swing which has become a morning routine for Bella to start her day.  She becomes very vocal during this time, displaying smiles and laughter.  Bella vocally protests when the swinging comes to an end by making growling noises and vowelized vocalizations.  She is observed to “smack” the switch for continuation of swinging with 74% accuracy with 4 prompts.  On our last data collection day, prior to this report, Bella activated the switch 8 out of 10 opportunities with only 1 prompt.  More laughter and smiles occur during a spinning movement of the swing as opposed to a back and forth movement.  The switch follows Bella to group times as well as play time.  The recording is changed to match the task at hand, so that Bella is responding as her peers do.  This allows her peers to view Bella as an active participant throughout the school day.

Circle:  Bella sits at circle time with her peers with an adult seated behind her to offer physical support.  She is encouraged to participate in circle activities by utilizing a switch to respond to questions or perform a daily job.  At times, Bella will become very vocal during this large group time.  She is usually positioned to the right of the speaker or activity in order to encourage her to keep her head in an upright, midline position.

During large group time, various forms of stimuli have been presented to Bella to observe reactions (noise of a blender, loud noises of vehicles from a recording of the city, a balloon deflating, wind of a fan, scarf on her face, bubbles on her skin and varying temperatures of hot and cold, bubbles on her skin, colorful pictures, new faces).  A reaction of “closing eyes” was seen for everything that was auditory – the louder the stimuli, the tighter the eyes shut, and the longer they remained closed.  When the stimuli was tactile in nature, furrowing of the brow was noticed.  Finally, when the stimuli was visual, no real reactions were noted.

Snack:  Bella uses a specialized cup with a straw (adult pushes on the top and water will squirt out of the straw into her mouth.) and eats thickened food (consistency of oatmeal or applesauce) during snack time.  The team has been working on improving Bella’s participation during snack time by attaching a spoon to her right hand with Velcro to support her ability to maintain her grasp.  With physical support at the elbow level, an adult encourages Bella to move the loaded spoon to her mouth for a bite.  In Oct. 2012, Bella was averaging 3/10 opportunities.  She has made progress with this goal, with her most recent data day being 6 times for every 10 opportunities.  Some days, Bella will protest during this time and, as a result, her success rate decreases.  When an adult feeds her with a spoon intermittently during snack, Bella has been observed to have more success with it’s her turn to do so.

Bathroom:  At this time, Bella wears diapers and requires full assistance during changing.

Play:  During play, Bella independently grasps preferred items, especially noise-making toys.  While lying on the floor, she enjoys rolling from side to side and reaching for various items.  Bella has been observed to use mostly her right hand when grasping objects but will utilize her left hand if an adult facilitates it.  She has been observed to turn towards a noise-making toy and maintain visual attention to the object as she reaches for it.

Strengths of Student

ability to use voice output device to request

happy child with a great laugh

eye contact is emerging

Parent Concerns for Enhancing the Student’s Education

self feeding

increased use of both hands

better eye contact

sleep

 

And that folks is Bella.

Puzzle Mastermind

  This kid has got his puzzles figured out without any help from mom and dad...      The 6 sided block one he got from grandma Judy however is yet to be mastered.  He knows what the six animals are for each side of the puzzle, just needs to figure out what color goes with what animal.  We were working on it tonight and I have a feeling he will have it mastered in a couple months.

  Oliver is also doing real well in the swimming pool and is practicing jumping off the edge.  Bella enjoyed being tossed around too and giggled till she was maxed out.  The neighbor's pool was a relaxing 80 degrees this evening.... Couldn't ask for better neighbors around here.

How is Bella doing?

We get this question asked of us quite often.

The short answer….Bella is good, Bella is Bella, Not much has changed.

And it’s the last answer – Not much has changed – is the one that is most depressing.  In that tiny little statement we actually mean. 

1.  Bella is still teething/not sleeping through the night/making us exhausted all the time. 

2.  Bella hasn’t made any noticeable progress with development, so to most people she is exactly the same she has been forever. 

3.  While life is good, life is still a struggle and always will be when Bella is concerned.

As we are starting a new chapter on life called “Full day Kindergarten” (Cue the chorus of angels singing), I thought maybe I would take a few minutes to document Bella’s preschool experience.

Bella started preschool when she was 2 years old.  She had 4 years of preschool, one year with Children’s TLC downtown Kansas City, and 3 years in our school district.

If you asked me what she has accomplished in her 4 years of preschool in an overall observance I would say.

1.  She eats better.  She still has to have her food pureed, you still have to feed her by spoon, but she can manage the food better in her mouth and she doesn’t choke as much.

2.  She holds on to more objects in her right hand for longer periods of time.

The end.

I’m not joking with the statement above.  That is in general her progress in the last years, that is why I have come to except that Bella will probably stay the same for the rest of her life.  What I don’t know is how hard things will be as she continues to get bigger and harder for this short person to manage?

That is why in the end, I just want to figure out what makes her happy and how we can make her life enjoyable in whatever capacity she has.

Tomorrow I will go into more depth on her actual goals, therapies, and what really happened in preschool.

New swing - take 2

Maybe the pout face was because the swing wasn't quite swinging yet...or maybe it's the pillows... She was excited prior to this picture, I swear.  On another note, Oliver enjoys having Bella's old swing to himself.

New Swing

Someone got a new swing.

This is a face of pure excitement.

Swimming Pool/Park

We went to a swimming park this past weekend.

Oliver had a great time doing just about everything.

Bella enjoyed the lazy river…go figure.

You will always have a friend

Bella woke up this morning crying.

I went and got her and held her for a little.  She was then smiling.  I put her down on her blanket, she immediately started crying again.  So I picked her up again and held her.  But soon, someone had stuck up the whole room and needed his diaper changed.

So I put Bella propped up in the bean bag and went about changing Oliver’s diaper.  When I came back upstairs from throwing away the diaper, this is what I saw.

It’s always nice to have a friend to come and hang out with you and give you support when you just aren’t feeling the best!

Master Bedroom Balcony

Jesse took all last week off and we had my mom around to help watch the kids.  So together we tackled the screened in porch.  BTW-it’s been a really really really long time since the two of us have worked on a project together for more than a couple of hours.  As always it can at times be quite a test of your marriage.

Anyways…let’s get to the pictures.

Here was the old balcony from the exterior with the original railings.  The original railings looked like they were made out of scrap pieces of 2x’s.

Here is the balcony now.  We completely tore out the old railings and built in new frames so we could screen it in.  We also used round metal balusters instead of wood.

Here is a shot of Jesse during the work.  It took us 3 days total to get the walls/railing installed and painted/stained, the screens installed, and outdoor carpet installed.

Our kids spent a lot of time outside below us while we worked (they had sitters/family watching them).

Bella hanging out in the shade.

Oliver getting in the pool with his clothes on and then having to be stripped down to his diaper.

Now we just need to furnish it, before we take final pictures from the inside.

Sunday Funday

We spent the day exploring the city with the kids…or at least our summer version of getting out of the suburbs.

First we headed to Crown Center in downtown Kansas City to see the Curious George exhibit.

Oliver watches and reads a little bit of Curious George, so he knew who he was and was excited to see him.

Bella looked around for a little while, but there really wasn’t anything she could do, so she and Jesse headed back out to the main part of the center.

And although Oliver could have spent hours in the exhibit…which was very hands on, he probably would have understood more and been able to work more things if he were older.

His favorite thing was watching the block go down and stuffing new blocks onto the conveyor belt.

After that we headed to Loose Park to check out one of the city’s splash parks.

At first Oliver was very timid, and spent more time walking around trying not to get too wet.

We had packed a picnic lunch, so while Oliver was first exploring the water park, Bella was being feed.

After lunch, Bella got in on the action.

And she loved it….absolutely loved it.

By the end Oliver was soaked, luckily we brought a change of clothes for the ride home.

I think both kids had a great day today…hope everyone had a great day too!

4th of July

I don’t really have any pictures of our 4th of July celebrations.  Mostly I wanted to write a quick post so that years from now I can come back and remember how these celebrations went when our kids were young.

Bella is coughing and up during the night again….enough said.

On July 3rd we went out to a friends party with Oliver.  Bella stayed home with Grandma.  Oliver was having fun, and as usual all over the place not wanting to sit still.  As the night got later we kept building up the anticipation of fireworks.  It was very late when the first firework finally went off.  And immediately Oliver started bawling.  So inside the house he went, still crying off and on when he would hear them.  And ended up playing with magnetic letters on the fridge.  There were a couple other little kids also inside the house who were crying and not enjoying the fireworks.  As soon as the fireworks show was over, we immediately loaded up in the car and left.

We had a 30 minute drive home, and for the first 5 minutes or so Oliver kept repeating “Boom Booms….loud…crying…letters”.  I think the poor kid was not only upset by the fireworks, but also upset he didn’t enjoy them when other people seemed to.

July 4th we had a neighborhood party.  We took the kids over early to swim,  Oliver and Jesse stayed at the party, while I ran home to feed Bella and get us changed out of our swim clothes.  And here is where parties get very unexciting for us.  One person has to sit with Bella.  Bella is immobile.  We could put her in her cart and move her around a little, but really at someone else’s house there isn’t a lot of room for a wheelchair to get around, especially when there are tons of people there.  So someone sits with Bella, at a place that is out of the way of people.  Which usually means you hang out by yourself, unless someone is nice enough to come and talk with you for a bit.

The other person constantly follows Oliver around as he explores and tries to get into things.  This means you are never in one spot for over a minute and you can not carry on a conversation with anyone, unless they are nice enough to constantly move around with you.

While the following Oliver around will obviously change as he gets older and can do things more independently, like play with the other kids, having to sit by yourself with Bella will never change.

And as much as we try to make it so she can hang out and enjoy the party, she is very set on going to bed at a certain time.  On the 4th she took a 2 hour nap during the day, and she was still falling asleep by 7:30 that night.  So we took her back home to bed, and shortly thereafter Oliver was also a wreak so we put him to bed at 8pm.  That meant someone had to hang out at home with them (thank you Grandma for sacrificing yourself!).

We did have some fireworks in the neighborhood, so when they started going off I woke Bella back up, since she loves to see bright lights.  We left Oliver sleeping, since he had such a traumatic experience the night before.

As soon as the fireworks were over I put Bella back to bed.

And that was our 4th of July celebration.

The Dining Room

The dining room is complete.  It only took 21 weeks or about 5 months to finish up.

Here are all the before and after pictures.

Oliver’s 2nd Birthday Party–Down on the Farm

If you want a description of the party, you can check out my post on Crazy Creations. 

Here are all the extra photos from the party, which turned out great, and he was so excited he really just couldn’t go to bed that night.  He just kept talking and talking and talking about everything, even all by himself we could hear him through the door!

He was a little shy with all the attention during “Happy Birthday Song”.

And here was his new riding pony (didn’t get any pictures from the party).