My son can dress himself… most days.
Archive for the ‘kids’ Category
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.
Friday was the day we went to pick apples to make our favorite fall gallettes.
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.
My beautiful baby got big!!!!!!
Y does it always feel like it’s my fault? Like it’s a personal failure? Like there was something I could have/ should be doing?
Tomorrow my son has an appointment with his neurologist at the Autism Spectrum Disorders specialty clinic we go to. We moved the appointment up a month because he is having significant anxiety, which is causing out of control behavior. Behavior that looks like an increase in motion when nervous- regardless of setting, footing, seated, STANDING on an exam table.
And he hurt my upper back. And we were in the pediatrician’s office. And I couldn’t push through the pain so I had to ask the nurse to step in. So the pediatrician thinks he needs meds for his anxiety- and maybe impulsivity.
And my response is… about me. About how if I just worked harder on his behavior, on teaching him relaxation techniques explicitly, on working harder to give him more skills, somehow I could have changed this path. As though I, his mother in every way except uterine growth, can battle it ALL. The genetics I have no real information about. The exposure to cocaine and its neurological impact. The turnover of nurses intended to be here to help with his diverse & dynamic medical needs.
Tonight I am feeling afraid of the impending added med. Tonight I am feeling like I have failed to give him tools I should have in order to avoid this path. Tonight I am feeling sad about the limitations of my capacity to “make it all better”.
Hoping it goes well. All I can do is give the doctor all the information she needs to make a good decision on what to do. And then follow through while continuing to try to work on all the skills that may help him to manage things better on his own in his future.