I’m going to make a big confession to you. I know on this blog I’ve written several times about “acceptance,” that is, having the power to accept that my kids’ disabilities are just part of life rather than try to change them. And I guess I was going along fine on that route until I discovered this thing called healing.
In 2011, we started on journey to help our kids do better in all areas by improving what they ate. Sometime later, we tried other alternative interventions: first, biomed and then homeopathy.
Today, we still use restricted diets – and let me tell you, we are WELL aware when a cheat has happened and homeopathy to treat them. It’s been going fine.
But when something not-so-great happens, I kind of lose it. It’s as if parenting disabled kids is some kind of cosmic challenge to get them better. I get my thinking cap on and come down really hard on myself for not being militant about this or that treatment. I try to scrounge up extra money to do this or that extra thing for them. I call the school to “check in” multiple times, I ask questions everywhere, I dig up new research, and I revisit diet and eating habits again and again.
It’s occurred to me that perhaps this is the very essence of not accepting.
NOT ACCEPTING HINDERS PARENTING DISABLED KIDS
Lately, or rather, since perhaps the spring, we’ve been dealing with regressions for both children. For Amelia, hers probably have to do with the trauma at the school closing last year. Well, it was more than a school closing. There were hurtful actions (and inaction) that we believe were done to ensure the closing of the school and personal hurts like my daughter’s favorite teacher avoiding her when she wanted to give a hug. Then, after a very busy summer, she had to deal with a whole new school, new kids, new staff, bussing without Zoe and more.
Every day she asks me for friends, which I guess she doesn’t have any, after hearing the OT’s recent report about lunch.
Zoe has been having more physical regressions, and those are also a result of the stress, the changes as we move closer daily to puberty and of course, her changes at school as well. She’s also got different gut issues (oy!) that we are working through.
While we of course work all this out with the homeopath, who suspects stress as a major factor, I know that God’s kind of been bopping me on the head because, to be honest with you, my kids are O.K., outside of these issues. They are happy in their current situations and they are learning about God. As far as I can tell, that’s truly what I’m responsible for: their health, wellbeing and the education of their souls.
For the last month, I sat back and let the schools do their thing but about a week ago, illogical fear struck me. Both my kids’ aides quit at the same time and I was struggling with “OH NO!! WHAT NOW?? HOW COULD THIS HAPPEN!! HELP!!”
Yea, I was a wee bit HYSTERICAL.
In my frustration, I sent a flurry of emails and got answers – some complete, some (as expected) unsatisfying – and realized there wasn’t much more I could do but sit back and watch everything play out. I had jumped too soon, especially with the new school who may now think I’m paranoid. Communication is at an all time low, but that too, turned out to be part of God’s plan. Here is my current plan of action regarding my kids’ education:
- Cultivate trust.
I’m trusting the comments I received, as much as any mom who has a child on IEP can trust a school. - Use more formal interaction.
This is for my youngest. When they *finally* get a new aide, I will call a meeting or at least an IEP. I am going to check up on things like where she is in math and make sure there are data points being plotted for speech and OT, and finally check in if there will guidance counseling offerings like in the past. - Use communication to my advantage.
My elementary school child needs to have more communication sent home, so I’m working on that. Again, I may need to call a meeting. For my 8th grader, I’m ok with pulling back on communication to start cultivating her independence. - Cultivating independence.
This is still on the backburner for my autistic daughter but after meeting the new aide, I want to make sure they work on fading back. For my 8th grader, I want her to be more independent. Part of that will be reconsidering her transportation options and after school projects.
In the meanwhile, I’m good with having happy and healthy children and at least attempting to trust that they are on the right path, as much as I am able to manage.
UPDATE: I’d like to share some things, since I first wrote this. Amelia’s speech is doing well and her first report sports an A and a B! Yay! Additionally, her speech is getting better, and I’m working with a new service to see how I can help her build friendships.
That said, I wasn’t actually paranoid after all. Turns out she was missing paperwork – no one ever sent the picture day form home. This is probably why no one informed me when to sign her up for after school clubs. Well, hopefully the new aide is solid in this stuff and Amelia will not be “invisible” to the homeroom teacher.
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