The tapestry of the life of a medically complex family

Archive for the ‘Trach’ Category

Homeschool Choice

To the doctors and others who judge my decision to homeschool:

It has come to my attention that there is some confusion about the reasons I homeschool my children. You are familiar with the medical reasons (trachs, illness susceptibility) but may not be aware that my choice is also based on the “whole child” needs of each of my children. In addition, it is in part supported by my knowledge of and experience with the US public school system’s structure & variability. For the purpose of this note, I will focus on what is right about homeschooling for my children.

Homeschooling allows for individualization of curriculum and instruction for each of my children. It allows my gifted & talented learner to stretch her abilities at her own pace, my middle ability learner to make age & grade level progress, and my challenged learner to receive appropriate instruction to move skills forward more rapidly than would be possible in a large group setting. It allows me to address developmentally & academically (MA Curriculum Frameworks) appropriate activities within a topic that captivates interest & keeps my kids motivated to keep moving forward in all curricular areas. Each of my children is learning at a good pace, demonstrating the success of their homeschool program.

With regard to social skills, my 3 children span less than 2 academic years in age. Unlike peers enrolled in traditional schooling who spend close to 5 hours a day listening to an adult or completing individual tasks at their desks, my children spend much of each day discussing interesting topics, playing interactively & encouraging each other’s learning. Although they are ‘familiar’ play partners, there is little predictable about their daily play choices & interactions. My child with an autism spectrum diagnosis is encouraged, challenged, instructed and drawn in to dynamic, sustained social interactions daily. Because they are supervised by both nurses & myself, they are regularly exposed to different levels of structure & independence, across different activities. In addition, local cousins (there are 4) visit regularly to participate in play as health allows.

Every day of the week, each child has structured & adult-directed learning activities, individually & in a group. Each completes familiar learning tasks independently, with new curriculum, on multiple days a week. They are read to, read silently & read to each other nearly every day. They do yoga, play ball games, swing, slide & run about daily. Because of their heat intolerance & health, they do tend to spend more time inside than out but have balance beams, an indoor swing & a loft slide for active indoor play as well. Homeschooling allows for spontaneous “field trips” to the beach, historical sites, birdwatching, the aquarium & movies.

As their health improves, medical status changes &/or I return to paid employment outside the home, I will continue to homeschool. I have the skills & intention to homeschool through high school or until such time as one of my children makes a valid case for their individual transition to a private or more traditional school environment that we can afford. Homeschooling is a family value that far exceeds any medical reason to do so.

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Apple Picking September 2013

Friday was the day we went to pick apples to make our favorite fall gallettes.

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Be

I dream of haircuts and dinners out
Of trips to amusement parks
And walking about

Of having a life beyond this small room
Vacation, independence,
And friends for each too

Hotdogs at the ball field
Sweaty seats on the T
Dreaming of normal that ne’er may be
Sprained ankles from skates
Tapping my wrist when arrival home late

High school and homework and

Lyfe

Morning
Nebs & meds & feeding trials
Greetings, hugs & beautiful smiles
Play & read & interact
Teach & learn, health status track
Bathe & complete trach care/change
GTube placement check, rearrange

Mid-day food may take so long
Mid-afternoon stretch & dance to song
Health assessment again at least
Add on treatments to stay “the beast”

Oops! Snack’s late! Run to kitchen.
Calories tracked, must get all in.

BARELY time to do much else
Place the toys back on the shelf,
Craft some dinner while they draw
Food refusal daily flaw

Meds, brush teeth, toilet rotation
Return to beds for neb medications
Pure exhaustion & anxiety spikes
Try to adjust things to his exact likes
Then 3 pass out, sleeping sound
While my continued work abound

Feed up, nebs clean, then the dishes
Wish all was done with goodnight kisses
ALARM!! Move child. Adjust the lines.
Add oxygen? Lung sounds? Write down finds.
A few repetitions of the same theme
Tiredness sets in but can’t yet dream

Feed stage 2 prep, change it over
Observe for delivery, let out ‘rover’
Wash the prep tools, counters, table
Try to nap hours while you’re able.
Every few hours check all of them
Awaken morning to begin again.

Blueberries 2013

Although it’s rarely easy, I work to give my kids age appropriate experiences. Today we packed up oxygen, suction, cooling vests and the wagon to head off to the blueberry patch. Trachboy picked nearly a half hour before needing the cooling vest & to sit in the wagon. The girls fared better, Youngest sat to pick but moved between rows pretty well considering. Trachgirl even handled being buzzed by a bee.
Trachboy needed suction a few times and an oxygen increase to 1.5Lpm to keep going (seated) but he ate more than the girls while there in the bushes. Lunch was delicious with the fresh blueberries in our homemade yogurt. Enjoy the photos.

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Monotony

I live an invariable life.

While others lament the “heat waves” that ebb & flow through New England summer, I hunt my lamb’s wool slippers every mid-day to tame the chill set by the AC. Heat intolerance is severe with the wee ones who seem to generate their own as a by-product of their metabolic condition. 65 is their ideal. We have all grown so used to it that I am able to detect the rising humidity, the point at which the temperature rises to 70.

The walls of the playroom and kitchen house our day. There are those fleeting moments when I open a door to put out the dog or receive an oxygen delivery. I am shocked by the heat that blasts through the opening. We read, play, climb, swing & slide indoors until the relief of fall arrives. Our only escapes: clinic visits, surgeries, medical tests- each with a cost: fatigue, regression, declining respiratory status.

Monotony. Invariability.

Safety. “Health”.

The Gift of Special Needs & Illness

I was chatting with another Mom to a child who will not outlive her. It is a difficult awareness that we live each day. A difficulty that is not without its own gifts for we who live it.

I think one thing about our kids:
It won’t always comfort us, but their strength through all this adversity, their joy, their sweetness, their ability to draw people into our lives who understand- who love us & them- that legacy will stay with us when we no longer have them with us physically. YOU, other parents of children LIKE mine & different from mine… it’s a gift my children have provided that will outlive them.

Bittersweet gift, but a gift for which I will forever be thankful.