Archive for the ‘parenting’ Category


Last week, I attended Sweet Girl’s PPT for the extended school year’s and next school year’s IEP. Thankfully, they threw heaps of services at her again. I won’t go into detail this time, because that’s not what this entry is for.

This meeting, she didn’t want to attend. Would. Not. Do. It. She wouldn’t speak with me about it ahead of time, nor acknowledge me when I approached her about it. Normally we script it out and make lists, and we write down her concerns, issues, and wish list. The team takes it seriously. She flat refused this time. I reminded her that if decisions are made for her without her, or that she dislikes then it’ll be harder for her to understand. It would also mean she gets less say in the decisions. Nope. She wouldn’t come down from the classroom.

Afterwards I told her about it and how well it went. She nodded and “mmm hmm’d” and shook her head no when I asked periodically if she had questions. At the end I asked her if she had any thoughts she wanted to share.

 

“Did you… mmm… did you advocate me for no homework clubs after school next year? Because I am old enough. You make my day too long.”

 

I told her that while I knew she wanted to end that program, I advocated for her to keep it and that her team agreed. I won’t share her exact initial reaction except to say that she was very angry.

Then she demanded to know why, which doesn’t usually happen until hours later. First, I validated all of her feelings on this subject as usual. I often commiserate, as I don’t like working late if I feel I don’t need to do so. I don’t typically explain why she has to participate in the homework programs after school until a separate conversation. This time, I validated her feelings and commiserated, but then in the same conversation I logicked her. The reasons I give are always the same, and they’re reasons that I know she understands logically. I’m 95% certain that she agrees with them because she doesn’t tell me they’re not true. I’m also 95% certain that she really just doesn’t believe they’re as important as I do.

The fact is that if she doesn’t do her homework or work she couldn’t finish in class during her after school programs during Summit or Homework Club (one with peers, one with teachers) then the work wouldn’t get done at home. She also has her peers there to help her or to make the work more fun, just like group work. She really loves group projects and takes them seriously. She gets really involved from what her teachers say. There’s more structure there as well, and let’s face it… if she has to do the homework and unfinished classwork while still at school she can’t take an unlimited break or wander off while getting a snack. She can’t sneak away to her room. She can’t become a boneless child and forget how to use a pencil. She can’t go to a gaming site for Pokemon and tell me it’s really her Chrome Classroom. When pushed, school is school, home is home, as she likes to say, and never the two shall meet.

The problem has been that I’ve done more emotion-validating than I should have, I think. No… no that’s not quite right; I’ve commiserated more than I should have since she started balking at the homework programs. After all, if I can commiserate with her about it then how could I possibly make a decision she didn’t agree with? It’s like making a decision against myself. At the same time, I was trying to argue logic with emotions. It doesn’t stop me from asking if she at least understands what I’m saying even if she doesn’t agree, or if there was anything else she needed to say.

If I parented only by emotion, however, I’d be a crappy parent. I don’t even make my own life decisions based solely on emotion. I think things through often to the point of overthinking. If I parented based solely on what my children feel they want and decided they need, I’d be a crappy parent. When I agree with them and make decisions they agree with, I’m a wonderful mother. Disagree? I’m the worst mother in the world. That’s usually the worst insult Sweet Girl throws at me: You are the Bad Parent of the World. Essentially, I was expecting her to tell me that I was Momsplaining. Maybe she’d have been correct.

This time was different.

 

You. Are not a good advocate.”

 

And then Sweet Girl walked away.

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There’s this blog entry I’ve been trying to write. Actually, this specific blog entry, as in “this space” for this entry. I’ve been trying to write it for a week. I say most of what I want to say and then I go on tangent regarding additional things I need to talk about but should be entirely new entries. Except they feel related. As what I’ve been needing to do in my life, I need to simplify this entry.

Therefore, this post is about simplifying the subject.

Due to the increasing severity of my disabilities and the demands of me at home, my life changing decision has been made. Altered somewhat from the original decision, but made.

I initially gave my notice at work two weeks ago. The decision was made. I offered to stay on until June 3rd so that I could have some private time before the girls started their summer vacation. My boss asked me to stay on until June 10th, but to also reconsider and/or think about conditions under which I might stay on.

Softy that I am, I second guessed myself and my decision. I’ll talk about it more later, but in the end I’m changing my schedule. I’m still working Monday through Friday except I’ll be going in at 9:00 rather than 9:30; I’ll be leaving at 1:30 instead of 2:30. I’m lobbing off half an hour each day, which was a half hour I wasn’t getting paid for anyway since my boss was counting it as a “lunch break.” Now, technically, I don’t need to register a lunch break and I’ll still get paid for the same amount of hours as before.

That works for me, at the moment. I’m going in earlier, which helps my production levels. I remember driving home and can spend some time with the family before I feel the need to rest upstairs.

Of course, the agency gets the better end of the deal in many ways. I did most of the compromising. I still have to meet with consumers, and answer phones, and take I & R calls. Apparently, I’m the only one who they feel is competent to work on employment skills.:-)  My concerns are still valid but I’m also taking more control of my meeting schedule. I’ll be controlling my pace better. When my pain flare ups occur, or my immune system craps out, I’ll be paying attention and pampering myself better.

Ah well. The best laid plans tend to get dug up and rototilled, only to be laid again.

 

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There’s such a great not-knowing because there’s the privilege of not *needing* to know until one *must* know in the so-called abled world. I hate that word, abled, as if having disabilities means someone isn’t abled or, in the common vernacular, capable of performing tasks of worth for the self, family, or society. There’s also an unawareness about intersectionality regarding multiple disabilities, as if it’s not possible to have more than one disability. But wait, there’s more… intersectionality with disability also includes gender, culture, ethnicity, abuse history, poverty, and other marginalized groups overlapping with each other.

It’s a privilege, but it’s also insensitive and inconsiderate. I’ve written about disablism before, ie. the attitude people have against disabled people and the discrimination. The article I’m sharing talks about how so much of it isn’t blatant and in your face cruel, and may seem like it’s not a big deal to those who don’t have (or don’t accept they have) disabilities. Very often, the person that’s engaging in disablism (ableist behavior) may even think that they’re showing compassion and being kind and not realizing that they’re being condescending, rude, or even harmful to the individual and disabled community.

I can give an example or two.

I drop my cane often, sometimes in public. Yes, I keep it with me always even if I don’t need it at that second because at some point in the near future I’ll likely need it. I can’t really leave behind what’s usually my third leg.😉 Anyway, I drop that thing frequently and there are times when I do it in public, strangers will pick it up for me.

That seems so kind and considerate, right? In that immediate moment their instinct was to pick up the cane so I wouldn’t topple over into the egg display. The problem is that they didn’t ask first. It’s a little presumptive that I can’t pick it myself, even if I may actually be in so much pain I can’t pick it up myself. Most people who haven’t been around others who use canes (or haven’t used canes themselves) don’t know where to touch the cane when picking it up, and instead pick it up by the handle… and I don’t know if they wash their hands after using the bathroom or sneezing or coughing. I simply need someone to ask,

“Hi, do you need help reaching that?”

 

People do that so-sorry head tilt with a pout and sorrowful expression when they hear that one of my daughters is autistic.

“Oh my god, how do you live with pain like that? I couldn’t live that way. Plus three girls? And one with Autism? I really don’t know how you can handle all of that. I couldn’t do it. But I ADMIRE YOU. You’re SUCH AN INSPIRATION.”

Not enough of an inspiration that you’d imagine yourself living with a disability or living with a child that’s disabled, apparently.

People send me tons and tons and tons and tons of advice from anti-modern medicine and anti-doctors and anti-education and anti-science propaganda web sites that they think will “cure” my pain and depression as well as my daughter’s Autism, and my other daughter’s ADHD. If I take the time to respond and actually refute the trash with proof and science, the response is usually,

“Yeah, but what if? So and so said that they used it and after six months they felt better, and their cousin’s friend was actually cured!”

Mmm hmm. What if. What if the snake oil salesmen are right, and all of those hundreds and all of those thousands of dollars of tainted “essential” oils I’m supposed to use for the rest of my life are a great “cure.” Along with the food supplemental companies that are so much better than actually eating real food, that really want you to join and sell their food-like products that are packed fully of allergens. Not to mention the insistence on avoiding real medicine for special filtered waters you can only buy from wherever. All of this instead of eating real good whole foods and exercise that’s tolerable with good medical care. Everyone else has the cures. Everyone else knows The Cause and who to blame.

My favorite is,

“Exercise helps. That Lyrica commercial says a body in motion stays in motion. How active are you, like REALLY? You ought to join a gym and try Lyrica.”

 

Yeah-no. All my nope. That commercial is irresponsible, and I could throw a tantrum about it right now, but that’s not the point of this particular post. It’s the disablism in the meaning well, the knowing better, the feeling so sorry, forgetting to ask permission, and so much more.

And here, now, is the post that inspired me from The Caffeinated Autistic. Much more eloquent than I managed to be.

Blogging Against Disablism: Sometimes it’s subtle…. – The Caffeinated Autistic

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Wrapped in a really nice package with a pretty bow, because sometimes I can be a little bit aggressive, and diary of a mom says it more gently:

There’s something that tends to happen an awful lot in advocacy circles (and everywhere, really, but it’s most obvious there) and I was hoping we could talk about it. It tends to go som…

Source: the courage to listen  | a diary of a mom

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Vague Blog Sorry Sort Of


I’m feeling overwhelmed, and there are a few things causing the anxiety. I’m edging in on depression, and I know it because I can feel that white tiger, so I know that I need to make a decision soon. The problem is that I know what I want and need to do; it’s the timing of the execution that’s the Big Deal right now. The timing will affect other people as much as the decision itself. I’m quickly reaching a point where I feel that I have no choice but to execute the decision. My hand is being forced. And yet, this is agonizing. Agony is the problem one way and the other.

I’m sorry to be vague. It’ll be clear soon, I promise. Since this entry is public, I need to keep it vague for now. Although some of you may already have guessed, it’s not really something that I’ve discussed publicly yet. I’ve offered information on the subject to others, and I may have blogged about it a year ago, but the decision has come ’round again for several reasons.

Oops, I’m going to be late for work. Tah, Loves.

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I’m a non-autistic mom who is blessed to parent an autistic daughter along with her two sisters. She’s an amazing, incredible young lady who is one of the three brightest lights in my life. This Sweet Girl finds being autistic to be a wonderful thing, something that she needs, something she doesn’t ever want anyone to take away from her. She says it makes things hard for her but she still needs it or she wouldn’t be who she is. She finds it shocking and appalling, and it hurts her deeply that even if Autism can make life difficult enough to cause some disabilities, that anyone would think up the idea, let alone that it’s a good idea, to cure anyone of Autism. She finds the notion of vaccines causing or having a correlation to Autism as ridiculous and silly. She can’t find words to explain how odd it is that she should have to defend her existence, or that anyone would insist on separating her from one of the very things that makes her the Sweet Girl that she is.

“Without Autism, I would not exist.” ~Sweet Girl

And so, with that reminder, I’ll just add my caveat now, before April: we shall NOT light up anything blue. We do NOT support puzzle piece comparisons. There are autistic self-advocates and bloggers who explain why far, far better than I can because it’s not my life on the line… it’s theirs. I value their opinions highly, especially those women who I’m so grateful to have found to show me what my daughter’s adult voice might appear like. Through their suggestions and sharing of experiences, it’s helping to make our journey through her childhood and my parenting go more smoothly. I enjoy the insights as much as I appreciate them.

Women like Amy Sequenza are your child. So I’m going to share two of her blog entries.

Why Autism Speaks Hurts Us – Amy Sequenza

Is Autism Speaks a Hate Group? – Amy Sequenza

Plus a bonus one from a different blog.

This is the last time I’m going to say this – The Autistic Beekeeper

And I’d like to suggest looking up #BoycottAutismSpeaks. You won’t regret it. Oh yes, and this handy dandy info-graphic. Share it. Download it. Memorize it. If you’re a parent to an autistic individual, pay special attention to the organizations that help autistic people. Include the Autism Women’s Network in there too. They’re pretty fabulous.

 

You may say, “But my child is autistic and we went to Autism Speaks, and they were really good!” or “But I know someone who speaks very highly of them because of their experience!” My response to that is, “Great. Good for you, I’m truly happy for you.” The issue I have is that any money you donated went towards research to remove the uniqueness from your child that makes him or her who she is. And if nothing else, even a stopped clock is right twice a day. I mean, last year even Autism Speaks came out and said, “Hey y’all, get your kids their measles vaccines.”

And on the Today Show yesterday, their founder, the father of an autistic son, floundered over how amazing his organization is for parents. Parents, not the autistic individuals. The support is there for parents who are stuck in the loop of believing Autism is a tragedy that happened to them through their child, or that God is punishing them. Parents who believe their child is damaged, sick, and imperfect. Not whole. Hiding behind the Autism. The Autism took them away. Broke them. And you know what? Matt Lauer sucked it all up with a dewy eyed spoon. He may have been a little drunk.

Parents… I remember that initial shock and the feeling of wondering what to do next. I remember wondering what *I* was going to do. It took me too long of wondering “why me and my child, why my family” before I was hit with the bitch stick. It’s really not about me, it’s about this spirited young lady I’m privileged to parent. The only “me” part about this was what was I going to do for my child and how to teach her to self-advocate. How would I teach her to become an adult that could navigate an amazing world.

Your child needs you. Show your child how amazing the world is and you’d better remember that the world is still amazing. The world is only as small as you allow it to be. The world is only as tragic as you allow Autism Speaks to let you think it is.

Stop the silencing of Autism Speaks and listen to the autistic self-advocates.

#AutismSpeaksSilencesAutisticVoices

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Good morning, Loves! I know it’s belated, but I hope that you had a wonderful Easter weekend. I hope that you have an equally wonderful Easter week.

It was wonderful seeing most of our immediate family. We missed a couple of my husband’s sisters, since they took their families to Florida, but we’ll see them this coming weekend for my eldest girl’s Confirmation.

It’s been hard for me to get to Church lately due to the pain, but it doesn’t reduce my spirituality or love for Jesus at all. It doesn’t reduce how amazing Easter is for me. It’s my favorite holiday, actually. It’s my favorite not just because it’s in the Spring and usually there isn’t a hint of snow (every now and then, there’s snow on Easter in Connecticut).

It’s my favorite holiday because of all of the typical reasons we usually give, the reasons that sound trite and cliche. This year we have two babies that are a year old running around, and baby that’s a month old. We have a four year old giving my three girls a run for their money. We have teen and tween nieces for my girls to get in trouble with. We have each other.

More than all of those things,  Easter lets us know that there’s… what’s the word… potential? promise? We have potential and promise to make the difference in our lives that we want to make. We can make changes that we need to make. We have get to be the ones to make the decisions if we choose to make them. We have the potential to affect change in others’ lives if we change our behavior and attitudes. Just as Jesus died and came back, every Spring we have the chance to remember what he did for us and grab onto his promise and take advantage of it. We can look at life with a more positive view if we choose, and slow our lives down even for just a few days.

We can reassess our schedules, routines, budgets, friendships, entanglements, careers, diets, etc. We can simplify our lives. We can choose what makes us happy, but is also considerate of and is a positive change for those we live with and have very close relationships with. We can choose which relationships need more attention, and which are toxic and need to be released without anxiety.

Easter is a release in so many ways, as well as a chance to focus, eh? It’s a reminder for us to take care of ourselves, our families, and friends. It’s a reminder to tend our relationship with God. God is in every positive change we make. He’s in every bit of potential, and every single promise. He’s in every lift of attitude and release in simplification. He’s the strength in the chain that holds our relationships to family and friends together.

Take good care of yourselves and Happy Easter. If you don’t celebrate Easter,have a beautiful day and take care.

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