A Post Not For the Timid

I signed up at the beginning of September for Blogging 101 – because I wanted to become a better blogger – and like the rest of the things I seem to want to do, it is on the back burner while I attend to yet another parenting challenge.

Be forewarned that this is not a nice warm and fuzzy post. It does not contain cute graphics. If that is what you are looking for today you will not find it here.

What you will find is some solace if you are going through similar struggles in your own life. Because misery loves company. Because sometimes our lives are easier if we know we are not alone in our struggles. And that is the main reason I started this blog. It is a straight forward reflection of FASD.

The maiden has not been in school for two weeks.

The renovations are ongoing at the house and we are all on edge.

A respite provider has finally been found for the maiden and she is out of the house. For three hours. And the crone is off to Home Depot returning a microwave that is too big for her new space. Except for the occasional sound of a nail gun, and sanding, I have peace. For another 45 minutes.

I have a meeting on Friday this week with an organization called Wraparound. Sounds comforting doesn’t it? The purpose of the group is to work with families who are experiencing struggles that resources are not so easily available for. And that is exactly what we need.

The resource teacher I work closely with is aware of what is going on but she is stumped. This is what she said to me:

Again (and I know this doesn’t help you every morning) she is engaged in her morning classes & has made a new friend who she has lunch with) she seems to be happy when she is here.

Seems to be happy when here. But she isn’t! Or she would be there. This isn’t just a case of not wanting to go here and there. This is a struggle I have had for five years. I am tired of fighting every morning to get her up and out.

And I have tried lots of different things:
Going to bed earlier so she isn’t tired (she can leap out of bed at 6 a.m. If she is excited about something).
Rubbing her back and being comforting about starting the morning off softly. (This just gives her more time to say she doesn’t want to go).
Giving incentives. (Rewards only work for a short time. She lives in the moment. Eventually it wears off).
Threats and warnings – you won’t get a job, be able to go to college, have nice things when you grow up. (She does not have the ability to see into the future to understand consequences or imagine what she does now will affect her later).
The resource teacher has been amazing at trying to implement courses and ideas. But so far they are only short-term.

She loves to learn. It isn’t that she doesn’t want to do the work. She is captivated by mythology, history, reading, even math – as long as they are at her level and she has one on one support.

School is not made for one on one support however. Homeschool could be the answer – but how can I homeschool her without an income. I am currently on our province’s version of social assistance, called Ontario Works. A bit ironic really because I am not able to work. Because what employer is going to take on an employee who is not consistent in attendance? I tried doing some contract work from home – so that I was at home if needed – but that didn’t work because sometimes I had a deadline, or meeting to attend and that would be the day she was at home.

Why can I not work when she is at home? Because she requires constant supervision. If there is a way to break something, get hurt, need assistance or get in a predicament, the maiden will find it. She is not able to do anything without supervision. She needs to ask questions. To be shown step by step how to do something. She can’t put away her laundry, clean her room, or work quietly on an assignment. Now sure, I could just put her on the computer to play her horse or dog game – that keeps her quiet and occupied – but that is not healthy or productive.

I started a college program through distance study last May. When I am able to go back to work I will need employable skills. I am 49 years old and I have very little saved for my retirement – because right around the time I got smart about saving for my retirement I adopted … And stopped working. But I have little time to get to my studies. Because the maiden is not at school.

Get someone to look after her some will say. Who? I have no friends where I live because I moved her to a small town to raise her – and we have not been accepted or welcomed because of the issues we had when she was younger. Unless you have or know what it is like to be in the world of mental disabilities it is impossible to understand the stigma involved.

Living in a small town also limits our access to services. So move to a larger town one might suggest. That would bring about other issues I am not dealing with. Like alcohol, hanging out, sex. She is protected from that here and quite easily would be led astray if she had access to more freedom. I know this because I know her and I know what happens to other youth with FASD. Not all. But many. Many others are dealing with these issues. I do not want to go there if I do not have to.

So I am stuck. I can’t seem to find time to study. I can’t work because I can’t rely on being available. I can’t leave her with my mom because she doesn’t “get” her. And after an hour my mom is exhausted and irritable with her. That isn’t good for either of them.

I notified the Vice-Principal of the situation – because I am not ready to pull her out of school before it have the meeting this week and I do not want to phone every morning to say she isn’t coming in – because until a plan is in play she will not be attending. Her response: she will either be marked as parental removal or have to attend once every 10 days. How is that for flexibility?

So, everything is on hold until this Friday. At least I will have tomorrow morning while the maiden is at respite to do some school work for myself. I am only a month behind.

What do we need to make our life work? We need financial resources to allow me to raise her the way she needs to be raised. We need consistent respite relief. We need a school program that supports her learning style – not the system. We need professionals who understand FASD. We need access to programs and services to support both of us at every stage of her life. We need more success stories and less struggles.

2 thoughts on “A Post Not For the Timid

  1. calmlyrandom says:

    I am not terribly good at communication, so I hope I won’t be treading on your toes, if I tell you about Emma, an Autistic child who’s mother has decided to homeschool her. Life is now so different for them!
    I don’t know anything about homeschooling, and I don’t know if you have done any research on the matter, but I thought you might just like to talk to Emma’s mother about resources. Perhaps it is more do-able than you imagine. Ariane is very helpful indeed. It will do no harm just to ask.
    I also don’t know you, but from what I have read, you are the kind of person that will be able to handle homeschooling. You sound so dedicated to your precious child.

    You can find them here, if you are interested: http://emmashopebook.com/
    and here are the homeschooling entries: http://emmashopebook.com/tag/homeschooling/

    It was when you wrote “She loves to learn. It isn’t that she doesn’t want to do the work. She is captivated by mythology, history, reading, even math – as long as they are at her level and she has one on one support.” that I felt I just HAD to tell you about Emma.
    Kind regards