Tag Archives: children

Homework, Demons, and Metaphorical Mountain Climbing

16 Apr

We all want our kids to do well.  Sometimes, I know Alex is working his butt off but people who are not me, who do not live with him, who have not struggled to achieve almost every childhood milestone with him, cheering him on, cannot see the effort.

I think this probably happens to most parents at some point in their child’s education, but I have a hunch that those of us with kids who aren’t just “wash and wear” (wash and wear kids are born, hit their milestones, and for the most part only visit a regular pediatrician) have this feeling more frequently.

I sometimes feel this need, this drive, to correct the tiny things, the little oopses, so my kid can shine and people will stop seeing only the little tiny bits that need extra care and all sorts of implements and technical terms and see him as the whole, amazing person he truly is.

Which is, well, what we all want.  It’s just that Johnny (generic Johnny, not a real kid) never got the raised eyebrow from the pediatrician or the talk in the hallway from the preschool teacher (and the business card with the number of Easter Seals on it)… But Alex did. So for me, at least, that makes every victory that much sweeter and as his Mama it makes me fiercely defend what he can do.  And he works hard. Really hard. Other kids in his class have playdates and sports and even siblings. We don’t have time for that. We have Asperger’s (his and mine) and a whole buffet of physical disabilities (mine) that make this “acceptable”(for a typically developing child) amount of homework one of the only activities our family has time for.

I realize that my child may look lazy or confrontational at times or like he just isn’t listening. But he isn’t those things and he is listening.  When his teacher said “Alex, you only do your homework when you feel like it” she devastated him.   Alex doesn’t “feel” like doing 4 hours of homework every night.  Alex doesn’t feel like missing out on all physical activity and fun because he struggles to understand and at the end of a 6.5 hour school day, the last thing he is ready to do is put his nose in the books and pencil to paper.  He needs time and space to decompress. Any kid would.

I give him two rules for his day as he stands by the elevator in the morning, “Have a great day” and “Do your best”.  I am at the point where wishing him a great day seems too loaded, because then he feels like he broke a major rule if he doesn’t have a great day and that’s the worst thing for him because  Alex doesn’t break rules. He can’t. He’s not wired that way.

So we are waiting for our meeting with the teacher.  I don’t think that she really understands our kid. We gave them piles of information (and well crafted summaries, so as not to overwhelm). I feel like they were ignored and here we are.

I feel like we can’t ask for anything because it’s a private school. I feel like we can’t push it because we can’t put him in our local public school. And I’m too sick to home school him and 18 months of zero income and sky high COBRA health insurance and being sick is expensive. These things have left us so deep in the hole that the future is forever changed and we are indeed so very stuck.

Alex broke down yesterday and told me that he hates school.  He said that everyone makes fun of him all day long.

I broke down too. Because that’s my kid. And there is no way in hell (or Florida) that I will let him experience what I experienced at his age and most of my life with my peers and with some adults.  I don’t have to worry about him not being accepted by his parents, because he is mine and no matter the challenge, he will have me by his side, ready to tackle it.  But schoolwork is making up 100% of his days since they bumped him into the first grade.  And if he hates school, that sadness, that feeling of rejection, is riding on his shoulders.  The kid is brilliant, I can’t have his self esteem or his desire to learn squashed this way.

So we are waiting for the meeting.

And I’m compiling bits of evidence to share with the teacher and the administrator that show how Alex’s mind works and that he isn’t being a defiant little brat, but that this is his neurology. This is his wiring.  It is amazing and it makes him who he is and he is a spectacular human being with an incredible mind and a spirit that needs to be supported and encouraged and not squashed like some unsavory kitchen pest.

So here’s the evidence from today.  Here are Alex’s spelling words:

He has a bunch of activities for homework, every week, that involve the spelling words.  The activities are actually pretty cool, as the kids learn spelling, grammar, etc…  But with the amount of homework, Jeff has found that the best way to tackle these things are to get Alex to first transcribe the words onto lined paper and then go through word by word cracking out the activities for each word, assembly line style (or “Robot Style” as Alex and Jeff prefer to call it as it is much cooler sounding).  So I had Alex transcribe his week 3 words 3x today.

Do you notice anything?  I was going to correct him at first…

See how “photographs” (his handwriting has come so far in the past few months!) is above the dotted line on the paper?

I said to him “Hey Alex, why isn’t photographs on the bottom line?”

And he said, because that is how it is written on the list of spelling words from the teacher and he told me that he has to write it the same way or she’ll be annoyed that he didn’t follow how it was written on the paper.

So I looked.

Here it is again:

To fit the word “photographs” in the list they had to shrink the font.  So the bottom tail of the “p” isn’t touching the line at the bottom of the box it is printed in, the way the rest of the p’s on the list do.

So he wrote it above the bottom line on his paper, so it would be precise enough for him to avoid reprimand.

I had him leave it alone rather than explaining it and rewriting it. Don’t worry, I’m not throwing him under a future bus, I will explain it to him but just not until I get to talk to the teacher or we are eyeball deep in next week’s words because otherwise he will flip his lid until he can correct it.  I told him that it was indeed written that way and that I would talk to his teacher about it.

I want to scream “SEE! SEE!” and jump up and down in the schoolhouse.  I want them to see that this isn’t attitude or defiance or stubbornness or just some weird but average kid who demands things his way.  This is MY kid. My wonderful amazing kid who has Asperger’s Syndrome and he doesn’t ever  break the rules.  Breaking rules is actually painful to him.  Writing the word “photographs” on the regular line would have been breaking a rule to him.  And all he wants his teachers and the other kids to see is that he is a good boy and that rules are important and that he always follows them and they can rely on him to remind them of the rules or even teach them new rules, rules that aren’t strange and bossy rules, they are rules that if everyone followed them our world would be a much calmer and happier place.

He occasionally makes up rules.  Like the list of rules he made for Jeff and me when we were upset about something.   He wrote his observation, “They weren’t happy” and his new rule “Be happy” in the little notebook that I used to help him draw paw prints in (I would leave post-its with paw prints around the house for him… it was our own little game of Blue’s Clues).

But other than that he just really wants people to:

Not run in the classroom

Be nice

Use indoor voices when indoors

Help each other

Not tap pencils when other people are trying to concentrate

Not talk when the teacher has said “No Talking” (and he always gets in trouble for talking during this time because he is trying to tell the kids who were talking initially that there is “no talking”)

Know what a good friend he is (he reminds me of this all the time.. I know what a great friend he is, but he wants a chance for the other kids to find out)

Respect electricity.

Are those rules really that far out and unreasonable?

I don’t think so.

And I’m not coddling my kid.

I just need people who have contact with him on a daily basis and are supposed to be fostering a love of learning to know that he is indeed organically different from the other kids in the class.  I need people who have contact with him occasionally (very occasionally) who have not given me the benefit of the doubt to give him the benefit of the doubt, and if they truly love him, to give him that benefit of the doubt while not taking advantage of our overly kind nature and our desire to fit in.

Every kid is different.

My kid is different from all of those kids.

We just need people to respect the differences and not make assumptions about our kid, about us.

I have lived my whole life with people judging me and not giving me the benefit of the doubt, my brain is full of facts to defend every action I have ever taken.  But that stops now.  I am who I am. Alex is who he is.  I’m sick and tired of dealing with other people’s laziness and closed mindedness and I am just not going to tolerate it anymore.  I’m so full of this frustration and anger lately and digging up old bones more than usual because I need to figure out where I screwed up – not in what could I have done differently to not provoke the wrath of various people- but rather what did I do to make them think they could treat me the way that they did.   And there isn’t an easy answer.  This isn’t about self-help books or talk shows. It’s about people treating each other in a mindful way and not always taking the easy and selfish route. And it will be a cold day in hell (Florida?) before I let Alex become a doormat for other people’s demons and desires.  And the best way I can do that is to stand up for myself and be the best damn role-model I can be. After all, I’m his Mama and his best friend, and together we can scale or topple anything that gets in our way.

Chances are though, we will still politely ask it to step aside first.

Then we’ll topple the daylights out it.

*cue soundtrack to Legend of Billie Jean…Glad I hid my haircutting scissors and Jeff’s clippers before I decided to blog this evening*

xo
Bek
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No Returns Without Receipt.

14 Apr

I promise things will be more upbeat and accidental thong-esque shortly.
Really.
Promise.

Here’s some good news: baldguy started training for his census job yesterday! The first work he has had in 20 months! So proud of him! I became an Auntie this week when my baby brother and his wonderful wife welcomed their gorgeous baby girl! I hope to get out to OH later this year (pending me being patched up) to meet everyone in person!

Ok, now back to the serious-ish stuff.

So here are my questions for you today.
1. Have you ever had a headache so intense that you lost the ability to comprehend language? I swear I almost said “NARM!” (Six Feet Under) today because I couldn’t find words or understand them. Alex was sweet and hung out with me on my bed until I regained the gift of gab. He really is a wonder, a gift, a miracle. Best kid ever.

2. (and this one is from our local news station) Should adoptive parents be able to return their adopted children? Vote below!

(sorry. this picture was just too perfect.)

No Returns Without Receipt

I’m a little scared to ask my adoptive parents how they would vote. Mostly because my head is just a ball of intense pain and standing in line at Adoptions R’US while the clerk tries to find the 34 year old receipt in the system and my mom makes my dad handle the return while she browses for a sportier model just sounds like torture.

I kid. Well, there’s always a wee bit o’ truth and honey in there for you.

I’m planning a longer bit on adoption, as it has been coming up so frequently lately- news, blogs, twitter, etc… I just kind of want to put my perspective (as an adult adoptee with multiple disabilities) on these issues… But for now…What are your thoughts?

Is returning an adopted child screaming of equality? The next thing you know, natural born are going to be demanding to be returned as well. And frankly, there are some rather sizeable physical limitations to that scenario.

Anyway,
I will call the doc in the morning. I just can’t get comfortable. I am reading quite a bit though, as the Kindle is light enough that I can lock up my elby-bones and read while resting flat. As of this evening though even pancaking myself on the bed isn’t easing the pain. So I’m up. For now. Until meds kick in. They don’t even take a nip out of the pain, but they make me sleepy and take the edge off the raw pain*-adrenaline cocktail that is ruling my life lately.

xo
B

*and really I’m not a big baby. I have been through some crazy shidoobi in my day, especially with medical stuff. I have a hugely high pain tolerance and between that and my Asperger’s I think I’m not really making how bad the pain really is clear enough to the docs. I’m kind of a goofy girl, but I get really quiet and mellow and calm with pain. I think I calculate everything more precisely, so as to not trigger more pain or damage.

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Stay of Execution

21 Mar

This feels like a stay of execution.

This busted body is fading fast, but now maybe it can get the care it needs to stick around a little while more and advocate for my kid and his special needs.

Grateful.

xo

Bek

Adventures of The Sneaky Chef in the Cave of the Aspie Kid

15 Jul

Boy Genius

A couple of months ago I intended to blog on this fabulous book (The Sneaky Chef) we had bought, hoping to increase nutritional value for our whole family, particularly Alex. I mentioned Alex’s food quirks and “rules” a little in my post “Islands in the Stream” and promised to check back in about the book.

Well, here I am. A little older, a little wiser, a lot more cooking under my belt than I typically do. I enjoyed my experiments and the creativity exercised in the kitchen. I really enjoyed that because of my abnormal level of fatigue and pain (yay, isn’t arthritis fun!) Jeff did the dishes and the grocery shopping so I could focus on inoculating tasty and fun foods with extra nutrition to make one of kiddo’s primary personal goals (and one of our goals as his parents) come to fruition.

Alex wants to grow up big and strong and healthy.

And we want him to grow up big and strong and healthy as well. (By big we mean: Not frail)

We have always avoided the concept of “the clean plate club” as in my million plus years of Weight Watchers meetings I had seen and heard of the fallout of such parenting & nutritional methods. And, as someone who has been on a diet since 3 weeks old (yes, you heard me: weeks) and I am still experiencing the fallout from that (I’ll cover that in another entry, at another time. Promise.)

So I am particularly sensitive to not taking the warden approach to nutrition. Our goal for Alex, in all aspects of his life, was to give him the tools to be able to make the best decisions, for himself, in his life. This applies to work, health, his personal life, etc… I do want to thank Early Intervention for asking us the important question of what we want for him and his life. We learned to keep it non-specific enough that we don’t suffocate him with our expectations, but enough that we can build goals. Good and important stuff.

So, we decided to start “Sneaky-cheffing” more nutrition into his regular foods and he even helped me (we both got so messy! he didn’t freak out completely! it was wonderful!) prepare a few recipes.

But guess what we found out? Our experiment reiterated that kiddo will probably never eat a casserole or anything remotely resembling a casserole- even homemade macaroni & cheese with real cheese rather than packet of powdery stuff is too much of a multiple texture experience for him. He’ll eat Annie’s Mac n’ Cheese but not the stuff I spent so much time planning and prepping and cooking. He also won’t eat any whole vegetables other than carrots. Think about it: Carrots are the same consistency all the way through- I can’t think of another vegetable that does that…Maybe peeled and cooked potato chunks-but then there’s a certain graininess, and with sweet potatoes a certain stringiness… Anyway, this goes beyond regular little kid dislikes and pickiness- these textures actually make Alex dry heave (or barf. Depending how deep we are into the meal.)

Some ideas from The Sneaky Chef worked beautifully- the idea of adding extra nutrition everywhere has stuck with me- even as far as adding water to a recipe (or instructions on a box)- I don’t add water (well not every time, I still need to work on the planning thing!) but use a nutritious liquid instead. I learned that blueberry juice doesn’t curdle milk and makes a fun colored alternative to plain white milk (or soy milk…Alex seems to change his preferences every couple of weeks)…

I also learned that we can sneak some of the purees suggested in the book into some foods, without objection.

Then Alex saw the jars. Ok, when I first started using the book I made my own purees. But as backups we had the recommended jars of baby food (not all of the purees are available as baby foods, and the homemade purees and mixes are much cheaper and not difficult to make and freeze).
Alex saw the jars. I took a deep breath. He voiced a little panic about baby food being for babies.

So I asked him (remember, he is deeply logical and literal and rule based. Think Spock to the nth power):
ME:Who eats baby food?
ALEX: Babies
ME: Are you a baby?
ALEX: No. I’m a big guy. BIIIIIIIIIIIIIIIIIIIGGGGGG! (makes war face and flexes and almost knocks himself over)
ME: What do you eat?
ALEX: Big Guy food.
ME: If you eat a cracker is it Big Guy food?
ALEX: Yes.
ME: So if you are not a baby and you eat the stuff in this jar then what is it?
ALEX: I’m not a baby!
ME: That’s right! You are a big guy! SO, if you eat the stuff in this jar & you are not a baby then the food in this jar cannot be baby food! It’s only baby food if a baby is eating it.
If a BIG GUY is eating it, it’s called “PUREE”!
ALEX: I like puree!
ME: YAY!

So, after all of our experiments trying to sneak “puree” into his foods we found out that Alex doesn’t like it mixed in. He likes it plain and separate from his regular food.

Of course, he has to announce, at the start of the meal, “It’s only baby food if a baby is eating it. If I eat it then it’s puree!”. Seriously. He says it every time.

Perhaps, if he adjusts to the taste this way, he’ll be more accepting of various textures eventually. Until then, I’m happy to serve him his vegetables in this manner.

A wise person once said, in regards to parenting, “Pick your battles”.

As he slugs down jars of summer vegetables (a sneaky way of disguising what actual veggies are in there- summer veggies are ok, broccoli & spinach, etc -not so much. Don’t forget, on top of our Adventures with Asperger’s, our Alex is still a kid. Sometimes, I guess that maybe it’s like having twins.) I realize that we both are winning and we can focus on moving forward to bigger and better things. I try to point out that it’s like a bisque, but he corrects me “Puree!”

I still think The Sneaky Chef is totally worth the purchase (Amazon has copies from <$2.00 + shipping to brand new…any which way, I think it's worth it) it was a great jumping off place for figuring out some small ways to enhance nutrition for the whole family.

(We have been getting various supplies through Amazon.com lately- yes, the Prime program is awesome! They do carry Earth's Best in 12 packs and Annie's Mac n' Cheese as a 6 pack- actually, with Prime, it winds up being less expensive than our chain supermarket and they are delivered right to our door. I'll post a link to my amazon store soon, where I'll have all of the things I have mentioned with links, to make things easier for everyone!)

xo
Bek

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ASK. Just ASK.

18 Jun

My attention was recently called to the Ask campaign. ASK Day is on Father’s Day (June 21, 2009).

The campaign proposes that parents ask about the presence of a firearm when their kids go play in another family’s home. Seems logical, but really, if we teach our kids about firearm safety (do not touch, tell an adult, etc) shouldn’t that be enough? I don’t think so. I don’t think it’s safe to assume all other parents are raising their children in the same manner as you choose. Or that even if you know your child well, that you can estimate the amount of impulse control or safety rules another child may have in their arsenal.

This statistic shocked me:
Nearly 1.7 million children, under the age of 18, live in homes with firearms that are both loaded and unlocked in the United States

(Pediatrics, the official journal of the American Academy of Pediatrics, Findings From the Behavioral Risk Factor Surveillance System, 2002, published 2005.)

You can read more at the Ask/Speak Up site

I don’t think anyone can argue with the frightening reality of that one statistic. The risk is there and it is real, and our kids are too precious to make assumptions.

Please share the AskingSavesKids.org link.

Hugs all around,
Bek


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