Caregivers, Parent Support

Now Open – a New Kind of Parent Group

I’m daydreaming about the ideal parents’ group this morning. If I could design one to fit all of my needs it would look like this:

Meetings in person for those able to attend, streamed online for those who can’t.

Dress not an issue. Come in your ballgown or some ratty p.j. pants… we literally do not care about appearance.

Sharing will be honored. Advice will be given if asked for, but please feel free to preface with “I’m not looking for advice.”

Policing discouraged. We won’t split hairs over person-first language, or preferred descriptors. If you love and respect your special-needs child, if you consider them a valuable part of your family and society, then we’re golden.

Bring the kids. The reality for many of us is that there is no respite, no support. We do not get time away from our kids, no matter how many people tell us we need it. We know we do. It just doesn’t happen. Whether your child is 2 or 42, don’t stay home for lack of care. Load up the legos, snacks, electronics, or whatever they need, and come anyway.

Now… how to make this a reality. Hmm…


Clearing Cobwebs

There is so much swirling in my mind, but words have failed me over the last couple of years.

I left the formal workplace sure that I could build something for myself. After all, I’m resourceful, reasonably intelligent, and had been writing blogs for years. It couldn’t be that hard, right?

Except it was.

I’ve started, built some traction, lost that, and stopped. I bought my own domain, worked on it for a year, and then let it go when I couldn’t justify the cost just to talk to myself online.

I made a small go of working from home, and experienced the disappointment of the contract lifestyle shortly thereafter. Another start. Another small move forward. Another stop.

I’ve learned what I do like (some predictability and work security), and what I don’t (spending 5+ hours to hunt down and secure and hour’s worth of work). I’ve learned that in this season of life, I’m not sure I have the energy to build a business empire. I do need a certain level of employment and enagement though, as much for a mental outlet as for pocket money.

So here I go again.

Autism Acceptance

Holding Space

I keep quiet in the parenting groups I belong to.

Most of them are specific to special needs parenting. I’ve been on a 10-year quest to find my people, and I thought they might be there. I don’t talk to many adults anymore; leaving the office meant leaving my defacto friendship circle behind. So, I set out to make some new friends, even if only inside the confines of a computer screen.

My search for pals has not borne much fruit. It seems that even in the small world of special needs parenting, I don’t quite fit in. There’s a lot of “real talk” that goes on in those groups, but it mostly just feels “real disrespectful” to me.

C has hard days, but they aren’t mine to share. I’m not going to hash out the details of his struggles without his permission, even to a group of special needs parents. The intricacies of his physical, mental, and emotional development are his own, and I can’t violate his privacy that way.  My conscience won’t let me join in on the “venting” posts. I’d never share a picture of him mid-meltdown. I’d never take that picture in the first place… and I don’t understand why some people do. The short of it is that most of it just feels wrong to me, so I end up standing by the metaphorical wall, listening in on the conversations of others, but never interacting much myself.

It’s strange that even though C’s Autism has such a profound impact on my life, I feel like it’s not mine to share. I’ve led with the assumption that someday he will find every word I’ve written about him, and I want those words to be overflowing with love and kindness. I want those words to be filled with acceptance; not the kind that is tired and resigned, but the kind that is excited and grateful to share this life with him.

Surely somewhere there must be a group of parents like me; who have been forever changed by this unique path, but who recognize that the story belongs more to our kids than it does to us. Those who recognize that we are just holding this space, until the day that our children find their voices and can tell the story for themselves.


Home Education / Special Education, Little White Schoolhouse

Evolution of a Homeschool

Once your homeschool affidavit is filed, the hard work begins. There are learning styles to discover, curriculum to be purchased, and lesson plans to be made. It can be overwhelming, and the biggest part of that is the fear of choosing wrong. What if a visual learner is mistaken for an auditory learner? What if we don’t like the curriculum? So many questions, and what can happen is that you feel frozen and unable to act. Take heart, and remember that no homeschool ends the same as it began. Ours has evolved over time. Just begin, and know that you can change as you go along.

The first year was the hardest, for two reasons. The first was that G was healing from his toxic school experience. Because school and unhappiness had become enmeshed, he was naturally wary of any learning time. For my part,  I was trying far too hard to recreate a “school” environment in my home. I wasted a lot of time worrying about G’s inability to sit still and / or stay in his seat during school time.

After the first year, I began to embrace a more relaxed approach, especially to such pointless concerns as where G sat, or if he sat at all. School time was much more productive when he was sprawled out on the floor, or curled up on the couch, or bouncing around the room. This was around the time that I began to question the notion of “training” autistic children, and move more toward a neurodiversity mindset.

Years 3-6 found us hitting more of a stride in many ways. I had more of a handle on how G learned. G himself was more mature and his anxiety about learning was less. The more I learned about the complexities of the autistic mind, I became more realistic in terms of lesson planning , and more mindful in terms of goal setting.

These days, the core of our studies are reading, writing, math, social and life skills, and art. History, science, music, geography, and Spanish have their place in our homeschool as well, but they take a secondary position to our Core. I have to think both in terms of providing G with a well-rounded education, and directing his time and energy toward those pursuits that he will need to function in adulthood. Whatever his career, earning, and independent living capacities turn out to be, he will be well served by a  foundation in those core skills.

Undertaking the home education of a special needs child has brought a special set of challenges. There have been times that I have felt unworthy of the task set before me, and I wonder why I ever thought I could do this. Those periods are short-lived though, as I soon remember how very rare a privilege it is to be in the service of such a remarkable young man. For whatever else comes of this journey we are taking together, I have had a front seat to the making of a truly wonderful individual. We will continue to refine what works for G as we go, with his voice gradually replacing mine, just as it should be.



Little White Schoolhouse

Homeschooling Our Autistic Child: How We Got Here

We hadn’t always planned to homeschool. In the early days of our marriage, when parenthood was a long way off, I recall thinking that it might be nice, but I wasn’t “called” to it in any way. Once G was born the thought of staying home to teach my child was set aside in favor of more pressing matters like health insurance and earning a good living.

As G entered his toddler years and his delays began to make themselves known, we enrolled him in early intervention. He aged out of their program, and the next step was to enroll him in a special needs preschool. At the end of that, he was offered a spot in a pilot program that our public school district was launching, for children on the Autism spectrum.

Believing as I did then, that G needed well-trained experts to help him advance, I accepted a spot for him in the program and dutifully brought him each day for a full school year.

There isn’t much that I regret about my journey with G so far, but enrolling him that program is one of my regrets. He was so unhappy, and it was naught but pure brainwashing on my part that blinded me from seeing it sooner. I dropped him off in tears and picked him up in tears for weeks and months on end. There was the occasional happy day, or positive report, but for the most part, it wasn’t a happy year. Still though, I showed up for a meeting near the end of the year so that we could make a plan for the next phase of G’s education.

At that meeting, an aide let slip a phrase I hadn’t heard before. She made mention of a “screaming room,” and when I asked for clarification, those in attendance quickly clammed up. It was through sheer stubbornness that I finally got a picture of the school year G had been having.

In this pilot program for Autistic students, it was evidently acceptable to enclose upset children in a tiny, windowless room when they become overwhelmed with the classroom proper. At first, they insisted that G was always accompanied by an adult, but after repeated questioning, they admitted that sometimes that adult was outside the closed door. They tried to excuse that fact by saying it was for the teachers’ protection. From what? My three and a half foot, thirty five pound son? In addition, I learned that physical restraint was an accepted part of their program, and that its use was neither sparing nor particularly scrutinized.

Driving home from that meeting, blinded by tears, pictures of G flashed through my mind. Scratches they claimed he’d given himself, even though he didn’t scratch himself around us. The split lip that was explained as having come from a playground collision with another student. Bruises, small and light, but still unexplained. Were they all as innocuous as we’d been believing, or was our boy being mistreated by those entrusted with his care? Our boy was effectively non-verbal. There was no way to know.

As D and I talked through that night, one thing became abundantly clear. G could not and would not be endangered. I became “called” to homeschooling in that instant. Our son was too precious, too valuable, for us to return him to such a horrible setting. We would teach him at home.

And so, we began.