A Cereal World

"We are living in a cereal world and I am a cereal girl..."
Welcome to my world. It's a little crazy, and a lot of fun. These are the rantings of a gluten-free, php-programmer turned homeschooling mom of a child with autism, who only occasionally makes the whole world taste like alien.
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  1. I’m a Slow Learner.

    So we’ve had a few weeks in hospital, and a few things have happened.

    On the one hand, I’ve been sort of snapped out of my pity party mode. We were in this place several years ago at this same time of year in a very different situation. Back then, we didn’t know if we would ever take our son home, or if we were enjoying the only moments we would have with him. The doctors predicted that he would never walk, and would probably never speak at all. They recommended that we “discontinue treatment” because the prognosis was so poor that they saw little hope for his future. (We were appropriately horrified, btw)

    So to be here with such a thing as a broken leg, well, that’s not so bad. No, it’s a flippin’ miracle! I mean, the boy can ride a bike! I mean, it sucks to see him in pain. It stinks to be here, but I’m hardly beside myself with woe that such a great tragedy has befallen us.

    And he can laugh and play and talk…

    And that’s where this other process has been happening. On the other hand…

    It was noticable, but less critical at first. Doctors ask, “How did you break your leg?” and he maybe doesn’t answer, or says, “I fell,” or answers clearly but they don’t understand.

    A few days later the problem gets bigger. “How’s your pain?” or “Does your leg hurt?” or “How bad is it on a scale of 1 to 10?” or “What does this feel like?” or “Do you want some medicine?” And his answers are unexpected, absent, or not helpful. And as time passes, my son gets more and more mistrusting of these scary strangers who seem to randomly ignore and hurt him. He screams or hides under the blankets if I am not available to translate. He clutches at my clothing when I try to leave the room to go to the bathroom.

    At first I was angry. How can these people ask such stupid questions? How can they work with children all day every day and not know better? Do they even know what autism is? But then I heard countless children answering these questions - questions that are difficult for me! I mean, scale of 1 to 10? You’ve got to be kidding! But 4 year olds can answer that accurately.

     I am astounded.

    And daily stumped when it comes to advocating for appropriate treatment for him - how much pain medicine does he need? - how do I convince the disbelieving doctor that this is what pain looks like for him? - how should I discuss their notion of patient consent and/or right to refuse considering his the communication barrier? …

    And something else has been dawning. A new sort of acceptance. A realization that, just because my son is doing remarkably well - is progressing, interacting, is happy, engaging, etc. - that doesn’t mean that none of this is going to go away. Just because other people don’t always see what he struggles with, doesn’t mean it’s not there. Just because it’s easy to blame a bad day on someone’s stupid questions or bad parenting or too much noise, or sickness or… something else… doesn’t change the fact that my boy has autism.

    And when he has a good day, or a good week, that doesn’t change it either.

    I think that’s been part of the struggle. The diagnosis came so late that I have heard years of doubts and blame and “couldn’t be”s. And it became a habit.

    So, during these last few weeks in hospital I realized that this is the way that it is and it is not going to change. And also that it isn’t just OK. It’s miraculous.

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  2. Looking Ahead

    Thanks everyone, for your support. It really means the world to me right now.

    We’re starting to look ahead to coming home. It’s a ways off yet, but we’re trying to prepare just the same. I have to confess, it’s discouraging.

    What we’re pretty sure of:

    • The kidlet will be in a hip spica cast, covering at least his broken leg down to the ankle, half of his good leg, and his pelvis past his belly button.
    • He will be fixed in some form of semi-seated position.
    • He will require a wheelchair.
    • He will probably not be able to be transported in our vehicle.
    • The cast will be heavy, making for 80ish pounds of child to be lifted and cared for.

    Yeah, sure, that looks like a lot of points, but we really don’t know very much…

    What we don’t know:

    • How we are getting home - being 14+ hours drive from home and not fitting in a car seat, driving isn’t a realistic option, but flying isn’t advisable so soon after a fracture or with such a large cast.
    • Where the wheelchair (and other equipment) will come from - it’s not likely to be available at home so will likely have to come from down here, but it apparently gets complicated with different health districts. (Argh!)
    • How we will deal with toileting issues, trips to the doctors office…
    • How I will lift 80 lbs of kid with my own owies.
    • How long the spica cast will be on - current esitimates vary between 3 and 8 weeks, with 6ish sounding most likely.
    • And what to do about any of it - there’s an awful lot of planning and preparation that needs to happen to get this guy home, but we aren’t really in a position to do any of it yet…

    I have this sinking feeling that we may end up staying longer than we need to because of all these details. There’s a good chance that it’s the unanswered questions and preparations left undone that may keep us here. And I just want to say that stinks.

    So I’m wildly thankful to be dealing with something concrete for a change. Something that doesn’t fall into the nobody-knows category. That is visible and not life threatening and temporary. But I still want to go home.

    And I want even more than that. I want to go home knowing that we have the help we need.

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  3. Broken

    Well, we’ve been happy that the kidlet is learning to ride his bike. Given his gross motor delays and the doctors’ dire predictions, that’s a miracle.

    So when he fell off his bike a week ago and fractured his femur, well, I guess we had to keep that in perspective. It took a few days of morphine, ambulance rides, and hospital transfers to get him settled in, but we’re taken care of now. We’ve been transferred to Children’s Hospital where he will be in traction for 3 weeks.

    This is where we notice the effects of “high functioning autism”. Yes, he is very verbal, and has a number of skills. But he can’t answer questions like, “does it hurt,” or “can you do this” or respond to requests like, “put your hands up like this.”

    I am so proud of how he has managed his pain through all of this, how well he is coping with the noise, busy-ness and unpredictability of hospital routine, and how he is doing with being confined to bed for extended periods of time.

    So thank you all for your kind thoughts and prayers. We need them now, with 2-1/2 weeks left to go, followed by several weeks of hip-casted confinement at home!

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  4. Some things I’m thankful for

    Generosity. People really are generous, and kind most of the time. I truly believe that most people are looking for the opportunity to help most of the time. But maybe don’t really know how. My son got his new iPad the other day from the people over at Mission Ipossible. They’re some parents who are trying to make things right after the whole yucky scam thing I mentioned a while ago. I have to say, it doesn’t just right, it makes it better. I mean, these are iPads donated to kids like my son by generous donations from people who are well aware of the potential to be scammed, because many of them have been already. That’s just amazing.

    The phrase, “that’s something I’ll do for you.” Oh yeah! It doesn’t get better than that. I had a meeting with the school today (homeschooling / DL ) for IEP and budget planning. The phrase I heard most often wasn’t “No,” or “We don’t fund that,” or “You have to consider the needs of the rest of the class.” Nope. What I heard was “We can do that.” and, “I’ll do that for you.” I am inexpressibly thankful for help.

    A recoverable day. Things didn’t go as expected. Again. But my guy was consolable, and we managed to have a nice time together, for the most part. I am thankful for those bright shining moments of together. Of dealing-with-it. Of just being who we are together.

    Hope. ‘Nuff said.

    Bedtime. That’s right. I’m thankful for a lot of things today, but I’m also thankful that the day is nearly over.

    G’night everyone!

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  5. To the folks at Mission iPossible, thank you.
This is one happy boy, who is already putting this tool to good use.  We’ve seen a difference already, in only a few short hours. More importantly, you’ve affirmed our faith and hope in humanity.
I could go on, but I think the picture says it all!

    To the folks at Mission iPossible, thank you.

    This is one happy boy, who is already putting this tool to good use. We’ve seen a difference already, in only a few short hours. More importantly, you’ve affirmed our faith and hope in humanity.

    I could go on, but I think the picture says it all!

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  6. When the Going Gets Tough…

    I just have to do something!

    The kidlet has been recovering from seizures today. He’s cranky and lethargic with moments of mood-swingy frenetic activity.

    I am recovering, too. I am wrestling with a lot of information. No, there’s nothing really new. There’s no horrible new diagnosis or terrible news. In fact, we’ve got the answer we wanted when we travelled to see the neurologist a few weeks ago. Yes, these are seizures and no we won’t medicate.

    But I’m trying to wrap my brain around how they could have been there since he was a baby and we’re only figuring it out now.

    And I’m trying to get past the fear. Because we sat in the ER in a seizure state and no-one recognized it.

    So it comes back to faith, again. In moments like these we find out what we really believe. And I am finding out that I believe that there is a God who has a good plan who is taking care of my son. But right now, that doesn’t make it all peachy keen. Right now, that still leaves me hurt and confused and a little bit peeved that He can’t put someone in place to make it a little easier. I mean, I know better than that, but I don’t feel it yet.

    Which is why today was a have to do something day.

    So I dove into that paperwork that I’m so far behind on. I dealt with funding, made sure medical records were up to date, and put together a new care binder for our kidlet. (Because now that we know what we’re dealing with, I can document it, right? Maybe we’ll even be able to leave him with a caregiver once in a while.)

    And I dove into that intense kind of cleaning. You know, the kind where you clean all day and the house looks messier at the end of it? Because you had to pull everything out of everywhere and sort through every last tidbit and scrub the nooks and crannies. Probably that will stress me out tomorrow when I don’t want to finish it…

    But we do what we have to do to take care of ourselves. And today I needed to do something. So never mind the mess.

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  7. Spent the day in emerg. Actually, the clinic, then an hour’s drive to emerg, then a trip to the pediatrcian’s office for another wait.

    Turns out, the 40 minutes of inexpressibly shrill screaming with only momentary pauses to shout, “It hurts! My tummy!” didn’t necessarily indicate a stomach problem at all.

    It also turns out that having seizures afterwards in the actual ER isn’t enough to convince the neurologist who lives 1000km away that the seizures actually occur. (Making us wonder some things about our rather and expensive and inconvenient travel to visit said neurologist a few weeks back)

    The good news is, the kidlet is fine and it’s business as usual. Well, at least “fine” and “as usual” enough. For our house.

    But we are feeling shell-shocked, tired, worried that we have missed something, frustrated with all of the “nobody knows” and disappointed. We felt like we were seeing the light at the end of the tunnel, and have had a few big hiccups this week.

    And also putting the question out there: does anyone else out there have experience with pro-dromal seizures or abdominal seizures? What about myoclonic seizures? While the seizure pattern is familiar, we’ve narrowed it down a bit and I could sure use some help in navigating all of this.

    So I will sign off to go and rest. Tonight I will soak in the tub and just be thankful for yesterday, and the promise of more good days to come, so that tomorrow I can tackle that research with new strength.

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  8. No iPads

    Well, the Marissa’s Bunny iPads are not coming. So if any of you followed my link over to the website a while back, I’m sincerely sorry. The site had been around for a while, had a good reputation, and seemed to have had a history of successful giveaways. And there appeared to actually be a Marisssa.

    As far as the iPads go, there were warning signs all along, but that was never the point. The point was that it was nice to see people wanting to help and do the right thing when times are hard, and that maybe we can rise above difficult circumstances. Besides, it didn’t cost me anything, right?

    It was a terrible scam, but you know, that still doesn’t change the fact that people came through. Maybe they were ripped off, but they were ripped off because they wanted to help. And that still counts for something in my book. I still believe the vast majority of people want to be good. Even though we all screw it up so much of the time. Including me.

    We’ve been through some hard times lately, and that’s what I needed to see. I needed to remember that people are good. That they care, and that my family is not invisible.

    So I think it sucks that someone preyed on people’s good intentions, but I thank God that people have good intentions to be preyed upon in the first place.

    And no, I don’t think we were victimized, just duped. I’m worried that this guy has some personal information (but he could have googled most of that anyways). He didn’t get any money from me. He didn’t make any threats or tell me I needed to give him money if I wanted to get my prize.

    He just wasted my time. My time’s pretty precious. But so is my hope. And, even though he betrayed my faith in him, he gave me hope.

    And believe it or not, my hope’s not dead yet. I still see the nearly $30,000 he raised and think that people care. That we can still do this.

    So, as for me, I’m spending today making some phone calls to see if we can’t find someone to sponsor that iPad for my kidlet anyways. Because the little things add up.

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  9. A reflection on how we view and teach children.

    Surprise! We’re not all the same! And as parents and teachers, it helps to recognize that. I loved this video!

    Now to get on with the business of being an eagle. Or a duck. Or whatever it is that I’m supposed to be. (Or not be, depending on who you talk to)

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  10. Another POV. Advocacy Doesn’t Have to Be Nasty.

    You know, just because I’m a parent, doesn’t mean I’m evil.

    I write about parenting a child with autism for a couple of reasons. Right now, I’m the only voice he’s got. He gets lost in a big wide world that doesn’t see or hear him. It’s my job to speak for him until he can speak for himself. Because he’s still small.

    And it is hard. Because it sucks to watch your kid get passed by for no good reason. It sucks to watch people look down at him for stupid reasons. Because he doesn’t stand in line or flaps his hands, or has a meltdown or doesn’t say goodbye. I mean really, is that such a big deal? I’m his mom - of course I want the world to love and accept him.

    I hope that when he’s older and able to speak for himself, he stands up too, and speaks out for others. I hope he encourages others and teaches the world that people are valuable not because of what they can do or because of how comfortable they make us, but because they’re people. No, scratch that - I hope he shows the world, every day.

    But I hope he does it with grace. I hope he shows the world how he wants to be treated. I hope that he doesn’t give the world a taste of the judgement he’s received. Because that’s the thing in the world I want to protect him from. I want him to rise above it. I hope he’ll grab on to the glimpses of “how it should be” and, rather than raging that there ought to be more of them, just make them a little bigger. Because that’s the kind of world I want to live in - want him to live in.

    And because I get tired of hearing about how much you hate parents. Because I am one. Because I’m this old and am still trying to forgive my own parents, and grumbling about being misunderstood doesn’t make it easier. And it hasn’t made me any happier.

    And because every time I leave the house, we get judged, too. As parents we get judged. Someone thinks it’s our fault our child’s autistic. Someone thinks we should do more therapy. Someone thinks autism is just an excuse. Why don’t I make him stop screaming? Why don’t I let go when he tries to run away? (PS- holy traffic batman! what kind of question is that?!!) Of course it’s just a discipline problem. Unless oh, the poor child, it’s just cruel to ask anything of someone with a “disability”. And everyone thinks they know what they’re talking about and get to tell me about it because the very act of walking down the street with a child who seems a little different makes it my responsibility to hear it. Seriously.

    Really, as parents we’re subject to the same crap as you are. And now, this is not a “poor me, it’s so hard” rant. It’s a “wow, the world is ugly and broken” rant. And really, you don’t know any more about where I’m coming from than I know about you? What makes you think I’m neurotypical or allistic or whatever else you want to call me? 

    Let me tell you this: being able to relate to my son’s struggles doesn’t make it any easier to guide him through them.

    I guess I’m just disappointed. When I learned there was a whole “movement” out there that was embracing neurodiversity, I was excited and hopeful. I wanted to be part of this group of positive people who got past the garbage and got on with the business of celebrating who they are. Not just because I want that for my son, but because I’ve needed it for me too. Shouldn’t neurodiversity include both of us?

    So I’m disappointed, too.Now let me ask you this: Has talking about my struggles ruined your autism tag, or has venting your anger ruined my neurodiversity tag?

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