Physical Therapy

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August 17, 2012 | Published in Adoption, Cerebral Palsy, Day In And Day Out, Developmentally Delayed, Education, Individual Educational Plans, Learning Disabilities, PDD, Physical Therapy, Speech Language Pathology, Support, Therapy

Hospital Homebound

by Heather P

School.

It’s happening around here. Some of the counties near where we live have already returned to recess, brown bag lunch, and smiling teachers. We…start Monday.

Well, my daughter starts Monday. My friend’s children start Monday.

Jack. Not so much.

See, we qualified for Hospital Homebound (HH). Basically, this is a school within a school. It has its own principal, teachers, guidance counselors, etc. Three times a week a teacher comes to my house and hangs out with Jack. Speech therapy and Physical therapy will visit him at home as well. However, it’s under the confines of the MotherSchool, which is the elementary that we are zoned for. (You still following me?)

HH requires a doctor’s note, medical records, and an IEP–all of which we have. And by have, I mean, I have his IEP, but The MotherSchool hasn’t updated it since we moved and so, he technically has no IEP. After calls and emails and days of stress, HH called yesterday to tell me that they are ready, but we are waiting for MotherSchool to set up the IEP.

Wanna hear the kicker? Last night I got a call from Ms. Ruby, the bus driver. She wanted to know where to pick him up on Monday.

That’s when I almost lost my religion.

So, while everyone gets to go to school and have that first day of wonder, Jack gets to wait to see when they’ll do his IEP, and I get to worry that I’m going to get arrested for my truant kindergartner.

Who’s bailing me out?

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Moms Gone Mad!

I have tried…

When Jack was taking therapy a million hours a week, I would sit in the waiting room and take in the “sights” and sounds around me (seriously, people, leggings are NOT pants!). So many times my heart broke when I would hear another parent, under the guise of “advocacy,” just pick apart either physicians, nurses, or therapists. Perhaps some of this is because I am a nurse (BSN, RN–MSN 2013)? Perhaps some of it is because I am careful about what I say about other people?

When I was teaching nursing assistants at my last job, I would explain to them that they did not need to enter the field and tell other nursing assistants what was wrong in that specific facility.

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Special Exposure Wednesday – Dance Class

The boy attended Therapeutic Movement classes. This was the part he liked best:

That and the cute little girl in the class,

Share what you managed to capture this week. Please spread the comment love around. Thank you.

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New year to begin…

I know what your thinking…NEW SCHOOL YEAR? How many days till school starts??? I have a friend that started counting the minute summer started. I enjoy our homeschooling time together. I love the beginning of a new year…the goals for the year, the dreams of what you want to work on, the reality of what will really happen. The fresh Sharpened pencils, crayons (even though we have 12 boxes already), the paper, the books, the construction paper…the excitement…the adventures.

This past school year offically closed today. My son had his evaluation that we have to turn into our school system with our next notification letter for the upcoming school year. Our evaluation is a little different. We take in the scrapbook of pictures of our work because the really is our samples of the year at school. We don’t have worksheets, we don’t have projects we can present, we have pictures of therapy sessions, pictures of field trips, loooooonnnnngggg lists of books we read over and over again. Descriptions of art projects, descriptions of fine arts (music) although I’m thinking we might have to invest in a tape recorder to tape some of the vocalizations that are happening more often & for longer periods of time. We are fortunate to have a licensed teacher that was a special education teacher do our evaluation. We take our scrapbook (new one every year) and a summary of things we’ve worked on. I’m always nervous to go have the evaluation done. Then after she looks over things and we talk…she signs the paperwork and gives me what I need to continue. Afterwards I always feel so much better. I second guess myself and if I’m doing more damage then good. But then deep down I already know he’s blossomed. He’s doing so much more than the doctors ever expected him to do. We’ve been out of therapy for over a year now…I’m not missing it, not sure he is either…but the doctor finally requested that we return to therapies…so we’re headed back 1 time a month. seems hardly worth it, but new insurance only covers 20 visits per year of OT and PT seperate.

So here’s to another year under our belt. Here’s to another year of growth and learning. Here’s to another year of reading books (gonna knock this year out of the park).

What’s your favorite part about this time of the year? Is there just one supply that you HAVE TO BUY because it’s back to school time? Does anyone have those new crayola dry erase crayons & wipe board? what do you think of it?

Wish you & your kids a wonderful school year! May your children reach all their IEP goals. May all your teachers understand you and your child. And may your children exceed their expectations! Wishing you MANY sucessful years to come!

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learning…

Learning…I’ve not written about homeschooling yet so I thought maybe this would be a good time. Homeschooling isn’t so typical for us, we have many challenges to get over. We do use therapies as part of our daily routine (even if we are still on sabbatical from professional therapies at our local hospital). We do a lot of reading…Last year we read 163 books (several times each). This year we’re working on doubling that. We’re in the 200′s right now. Things that I have noticed lately are that my son appears to be more aware of his surroundings and is learning to place sounds. Not that he didn’t necessarily know where he was, but things that are taking place around him. Such as sounds…he’s now really focusing on where it’s coming from. He loves to be startled by a sudden noice then wants it repeated over and over. Gets excited if you wait a while then repeat a sound. He also is really anticipating…when you do something rhythmically then pause, he’ll smile in anticipation for the rhythm to continue. He’s always been musical & a music lover. Probably realizes now that neither mom or dad can carry a tune in tune. (that explains all his laughing when we sing.) He’s mimicking…we attempt to sing a scale up and back down…he trys to do it too. His new word (besides the most important “mom”) is now “dadada” I swear he actually sounds like he’s putting together sentences too (has been saying “love you” for a long time) but now he’s saying “where ARE you?” “come FIND me” and the latest “do it again” I swear it’s not just my ears hearing what I’ve longed to here words. The “Equipment” piece I wrote about before, the kid walker…we finally got approved and now have it (YAHOO!) he stands in it and pushes backward or stands while “running” like a mad man (but not really moving anywhere just legs are moving). When we move into a practical house I think he’s going to LOVE his kid walker and there will be no more sitting down! He’s able to sit, crossed legged on the floor and balance. That was a huge milestone! Can sit & balance for quite a while…at least til you make him laugh and then his tone kicks in and his legs come uncrossed and out. Oh but that giggle (my favorite!) He’s tolerating being on the floor a little more (still vocalizes his complaints but is willing to be there for a little longer). Today he rolled over onto his belly and was scooting across the floor with his arms stuck under him…if it weren’t for his legs he’s be stuck in the same place, but with the help of his legs he scoots himself across. Arms dont move even if they weren’t stuck under him. Also on the food front…moving away from pureed foods with no textures to foods with lots of textures and doing REALLY well at it…at 6 years old 49 1/2 inches tall and 38 pounds 6 ounces….I’m exstatic about how things are going!

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Learning to ride…one step at a time…

A Cowboy Needs a Horse

Johnny lives in a big city, but has everything a cowboy could want
(Everything, everything)
He has a place to pan for gold
(Panning, panning)
And he has time to shoot a buffalo everyday
(Shooting, shooting)
And every night, he dreams he’s a cowboy riding the rangeFinally found the words to this song, it’s on a disney sing along VHS we have and we sing it all the time. (well me & Tristan…and he seems to like it

Ridin’, ridin’ along…

Oh, a cowboy needs a horse, needs a horse, needs a horse
And he’s gotta have a rope, have a rope, have a rope
And he oughta’ have a song, have a song, have a song
If he wants to keep ridin’

Now a cowboy needs a hat, needs a hat, needs a hat
And a pair of fancy boots, fancy boots, fancy boots
And a set of shiny spurs, shiny spurs, shiny spurs
If he wants to keep ridin’

Oh, the fence is long, and the sun is hot
And the good Lord knows that a cowboy’s gotta keep
Ridin’, ridin’ along

So he gets himself a horse, and a rope, and a song
And he finds himself a hat, fancy boots, shiny spurs
And there’s nothing more he needs, or can have, or can get
If he wants to keep ridin’, ridin’ along

Spurs, shiny spurs
Boots, fancy boots
Sings a western song
Ro-oh-oh-ope
And a horse
If he wants to keep ridin’, ridin’ along…

Tristan has been working up to the ridin’ for about 5 weeks now. The first time we thought it’d be a little sensory overload…smells, sights, sounds, feeling and if you can smell it you can almost taste it (even if you really don’t wanna). He was very stiff going down in the barn, down the stairs in the wheelchair, I will have GREAT ARMS…one day, but the owner brought out one of the horses for Tristan to meet. Peaches, she’s a little patchy and white & golden color and Beautiful. She’d bring her nose right down for him to touch. But she didn’t know he couldn’t see her, but he was feeling her breath on him. she nudged him a little. Picked up his sleeve with her teeth. I tried to get him out of his wheelchair but he went stiff as a board…he wanted no part of this.

Week 2 we reached Tristan’s hand up to pet the nose of the horse. Got him out of the wheelchair and pet the side of the horse, leaned a little on her. He seemed to be much better…Then she licked the side of his face. That was it for him. Although I bent over to tell him it was ok, that she wanted to give him kisses, Peaches nosed me out of the way, she thought I was hurting him. He stopped when he felt her breath on him again. Nostle breath nothing quite like it.

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Got My Back Up

On Thursday, we had a great meeting with Precious’ occupational therapist, physical therapist and vice principal. By ‘we’, I mean me, as DH was flat on his back; a victim of the same virus that has been plaguing our family for the last 4 weeks.

Precious’ teacher and her speech and language pathologist were both absent from the meeting, as one had an appointment and the other was sick.

The occupational therapist (OT) and physical therapist (PT) had both recently assessed Precious for the first time and they both seemed to understand pretty well where she is developmentally. They both had new ideas for activities we can do with Precious to help her and they are incorporating these into the school. I was pleased to see how supportive the vice principal was.

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The Domino Effect

For the last two years or so, we hadn’t had many appointments with specialists. Precious doesn’t have any serious medical issues. She’s got minor ear, nose, throat issues, so we go every 6-12 months, and she has dental issues, but these only require regular dentist appointments for now.

She has an undiagnosed congenital (she was born with it) issue. It started out as low muscle tone and turned into a global developmental delay with a more noticeable cognitive delay.

A few months ago, we got a call from the geneticist, asking us to come in to be re-evaluated. While we were there, she noticed we hadn’t seen the opthamologist for a couple of years. The opthamologist had told us to come and see her ‘as required’. As Precious has nystagmus (shaky eyes), the geneticist figured we ought to go even though nothing had really changed with her eyes. The geneticist also noticed a slight curvature of Precious’ spine, which warranted a back x-ray and a follow-up visit to the orthopedic surgeon to confirm the scoliosis.

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Therapy Tools (part 2): PT

When J was about 16 months old her therapist suggested ankle-foot orthoses (AFOs). J was just rolling over and wasn’t crawling yet. She could bear weight on her legs with support and the therapist wanted her ankles and feet positioned properly when she was standing for therapy and in her exer-sauser at home.

J hasn’t seemed to care whether she’s wearing them or not. So she doesn’t fight when we put them on her unless her muscles are exceptionally tight that day. Then she will protest. There are days I’ll wake J and her muscles will be extremely tight and then others she will be floppy like a rag doll.

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