My son can dress himself… most days.
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.
Dear Distant Eyes Beyond Our Bowl:
We’re different, special, but stop patrol!
Your judgment hurts us more than too
Our lifestyle choices for health do.
Our lives are not desolate spans
With moat around our modest manse.
We bake, we play, we go to beaches.
We sing, we dance & Momma teaches.
We SKYPE. We see. We swing on swings.
We venture out in health or springs.
We visit family, play with pets,
Eat rest’rant salad, point out jets.
In winter: shovels, snowballs, sleds,
Skiing, snowforts, cozy beds.
Building, learning, having fun-
Our family life a VALID one.
View our year in picts below-
Maybe one day try & know
Your view is cloudy- narrow best-
STOP the judging- give it rest.
I apologize when I cry. Not just to the friend who wipes his shirt with a tissue when I’m done, or the friend whose dishtowel needs the dryer after a long lament.
I apologize for each tear that escapes my eye while talking about the difficulty of awake nights spent caregiving my children. I apologize for the gasp that escapes as I talk about my son’s ride in the wagon to the apple tree, to which he could run 2 years ago. I apologize for the pause while talking to the phone nurse and describing how ill my child is again, or yet.
I apologize to my nurses when I cry from the stress, or from loss, or from injury. I apologize.
I grew up in a home where crying was a sign of ‘weakness’. Crying in the house of the Colonel was the equivalent of yelling your inadequacy from the rooftop. It was admonished. It was hidden. It was shunned.
There is a doctor my kids’ see who must also have been raised by the colonel. The notes describe significant concern about my stress. Tears fell but I continued; my kids were safe, they were (are) well-cared for, yet my stress was concerning.
I am sure I apologized. I apologized today to the phone nurse. I apologized to the doc who called me back- not because I cried then, but because I had cried.
The next time I cry, I will work not apologize. When I cry, it is because I am strong for so long. When I cry, it is because I feel so deeply. When I cry, it is to release the strain, to refill my resolve, to regain my strength. I should not apologize for that.
In a world where things are working as they should, a home nurse would be a support to the family of a child with complex medical needs. While we have come across some of the GREATEST gems in home nurses, the majority are more liability than support. Agencies approximate a screening process, occasionally provide some basic training, but rarely know the individuals they schedule and send off into the homes of some of the most stressed families with the most vulnerable children. These “professionals”, who should provide support, training & relief to families, more often contribute significant additional stress and lack many basic skills.
I have a wish list:
1. Screen nurses for basic skills (e.g. lung sound assessment, trachs are AIRWAYS, GTubes are for feeding…) in addition to running their license & finger prints.
2. ASK the family what hours each day they would like covered. Perhaps develop a way to determine which shifts are MOST important to have covered for the family you are trying to staff.
3. Be honest when describing the skills a nurse brings with them- have they NEVER worked with a child with a trach before but you chose them because they had the priority hours available & seemed to learn quickly in in-house training? Truth works.
4. Teach your employees what it means to be a professional: be on time, give notice when you need to cancel a shift or change schedules, treat this position as a JOB.
5. Assess & then train basic skills that a homecare nurse may not have acquired if this is their first job- e.g., check order, check dose, check label BEFORE administering a med.
6. FIRE nurses who deserve to be fired rather than recycling unskilled or dangerous nurses to the homes of other families when an incident occurs.
7. Provide successful nurses with payment for helping to train new hires for the case they are on.
8. Support families by acknowledging that their nurse preferences (education, certification, experience, non-smoking status) are reasonable when this person will be IN their home & child’s play or sleeping spaces.
9. Acknowledge & respect the level of experience of the patient’s family members. Require your nurses to do the same.
10. Work to be understanding when a family is abrupt, angry or scattered. The stress of staffing their home, as agency staff or a nurse, is nowhere near as stressful as being the family member of a child whose medical needs are severe enough to qualify for home nursing services. Allow families to re-group & provide excellent customer service- when you do, there is no one who appreciates it more than us.
Originally I published this piece the day before my friend’s son’s first birthday after his death. This week has been one of tremendous loss in my community of friends and another friend is trying to get through a 10th birthday- that isn’t. My heart is still touched by these many children. Here is my message to E’s Mom:
SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.
Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to, or will, experience this pain.
I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.
I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.
These are the things that break a Momma’s heart
The struggle continues though you’ve fought hard from the start
Evidence of aspirate, the world is turning blue,
A good night for a couple, we won’t give up on you
Then appointments back up snack schedule, dinner try falls through,
We start the feed so very late but back-up does ensue
5 hours past the last small bite, we try the feed again
Although the first half down the sink, the second part gets in.
We learn to thank for every small victory with you
The news of overnight that passed: no trach nor pillow blue.