MacGuyer Has Nothing On Me

Thursdays are All About Mineral days. He has Occupational Therapy, psychological therapy — and occasionally sees his psychiatrist. I spend a ridiculous amount of time driving him around, which keeps Cousin It from napping (as well as My Masterpiece and ME) and also waiting for him because the appointments are short. But! Then! We got new neighbors. And the neighbors had two teenage girls who could babysit. And I rejoiced upon realizing I could pay one of the teenagers to sit in my house and play on her iPhone while Cousin It and My Masterpiece napped, and I could do a few errands without kids (or with just one kid).

It seemed like a great idea at the time.

Thursday we had an hour break between doctor appointments, and like an idiot, I decided to come home and nurse Cousin It. Because I love her, and I love nursing her, and I’m obviously insane. Cousin It chose that moment not to really want to nurse, because she hates me and hates nursing and she’s obviously insane. However she’d already seen me, so I decided to take her with us.

(The other choice was to leave an inconsolable toddler, who has a slight case of attachment disorder [diagnosed by My Chemical Romance’s sister, who has a bachelor’s degree in psychology, after spending the day with us in San Diego a few months ago] with the teenaged iPhoner babysitter. And while I’m sure the teenager does a great job playing on her iPhone watching the older kids, I’m not so sure how she’d do with an inconsolable detached Cousin It.)

That seemed like an okay idea at the time.

When we got to the psychiatrist’s office, I realized that I didn’t have a diaper bag with me, and also Cousin It had a giant blueberry poop. If you’ve never seen one, it looks like your baby ate some tar. Another issue: she was wearing a dress, and the diaper was not quite containing everything.

This is the dress, being used for its original purpose.

Did I mention that the psychiatrist usually runs at least 20 minutes late, this poop would NOT stay in the sagging diaper and I had no diapers or wipes with me? True story!

I took her to the bathroom to assess the situation… no changing table. Because, OF COURSE THERE WASN’T A CHANGING TABLE. I took off the diaper and began cleaning her off with paper towels and water.

I immediately got a streak of tar blueberry poop on my shirt.

I still had no diaper with which to cover her.

The blueberry poop was kind of sticky and difficult to clean.

Just when I was about to throw my poop-covered hands in the air and let my baby come to the psychiatrist appointment, bare-assed, I discovered some good news: I had a snappi in my purse!

And also, I’m a MacGuyer mom, and Mineral REALLY NEEDED TO SEE THE PSYCHIATRIST (or maybe I’m just projecting), so this happened

She didn’t seem too unhappy about it, overall.

What you can’t see is that she has about 150 mosquito bites on her back and tummy and arms and legs, because we live in North Carolina, about two hours from the ocean and there’s a lot of trees and bugs here.

In the grand scheme of things, this was mostly a huuuuuuuuuge save, because I had no choice — other than nudity — and she didn’t mind it at all, and also she didn’t pee in it and I doubt the snappi even ruined the dress. But really. Really?!?!?! This is my life: putting my mosquito-bite-covered daughter in a pink-and-yellow-dress-turned-cloth-diaper-without-a-cover, while I’m streaked in blueberry poop, and then calmly discussing my son’s issues with a psychiatrist who probably thinks that I’m the reason why Mineral needs medication.

Yes.

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One Gluten Free Kid Update

Mineral has been gluten-free (GF) for a few weeks now. At first it was really challenging, but then I found corn tortillas, and everything has been fine. No, really. He loves tacos.

Actually, what’s made it easier is that Mineral is really committed to being GF. As soon as I told him we were going to try it and that it might help him with his behavior, he was on board. After a few days, he told me he thought it helped him sleep better at night — which is a big issue for him. He tends to stay up later than all the other kids, playing with Legos or reading in bed. Since going GF, he’s been able to fall asleep earlier, and easier.

Mineral an Animal playing checkers at Marbles Museum

I’ve made it easier on myself by not insisting that all of us eat GF. This helps because eating GF can get expensive. In theory, if I were to avoid all flours and grains it might be less expensive, but since Mineral ate gluten for over nine years, I’ve been making substitutions and those items are expensive. GF pastas and breads cost more than regular items. GF cereal — there’s this one that’s really good but it’s $6/10oz! — is costly. Meanwhile, I’m trying to make sure that he has GF treats, like GF brownies and cookies, and GF pancakes on weekends.

At first it was really challenging, but now it’s easier. If I cook dinner for all of us I make sure it’s entirely GF, and he will eat leftovers the next day for lunch. Also, Mineral loves fruit, which is GF. If he hates dinner, his next day’s lunch is a hot dog with a GF bun or peanut butter and jelly on GF bread for lunch. There’s the delicious-yet-expensive GF cereal for breakfast, and Earth Fare has GF items for their weekly Kids Eat Free night.

Not insisting that we ALL eat GF has helped me, too. I think I was more traumatized by the idea of eating GF than Mineral ever was.

White flour makes me SMILE! (Mineral took this pic)

He’s also taking a new medication that is supposed to help with outbursts, along with his twice-daily ADHD medication. Recently I lost his prescription and he was out of the ADHD medicine for three days. That was NOT fun. (Maybe I need some too?)

Some other things I’m trying

  • I got him a pair of noise-canceling earmuffs. The kind that construction workers wear on a loud site. He was telling me that his sisters’ loudness bothers him (Hey, it’s not just you, Mineral) and I thought the earmuffs might help. Mineral LOVES wearing costumes and other weird stuff, and I knew that the earmuffs would be aesthetically pleasing. His only complaint is that he can’t hear the radio when we’re in the car and he’s wearing them.
  • We started a chart that includes daily expectations in hygiene, school and chores, as well as extras (which earn between 10c and 25c per chore). So now he knows what is expected of him and what is an extra.
  • He can take a five-minute break if he needs to. This is not a chance to get out of doing a chore or a way to completely avoid a responsibility (like his Occupational Therapy, which seems to cause a lot of stress), but an opportunity to take five minutes to stop what he’s doing and calm down before continuing.

Often it seems like two steps forward, one step back (or vice versa), but I can see improvements overall. Next week we’re going to Florida and I am hopeful that my parents will see a change in Mineral’s behavior from the last time she spent time with him. We no longer have to step on eggshells quite so much with him.

Gluten Free Mineral

Mineral has been very challenging lately — and I do not mean that he has been challenging all the time. Which actually makes him more challenging. He is intermittently behaving, which is the most effective way to reward someone drive me fvcking crazy.

I took him to the psychiatrist today and the doc was all, “I thought he was fine?!?!?” and I was all, “He was! He is! Sometimes! I don’t know! When the moon is new and mercury is in anterograde or something then he is MAYBE okay! But maybe totally not okay.”

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The psychiatrist gave a rx for another medication in addition to the ADHD medication, and I asked about trying gluten-free. Miss Manners recommended it. He said he doesn’t suggest it but I could try it. He also put a lot of stock in the therapy that Mineral receives twice a week — psychotherapy and occupational therapy.

I do not want to downplay the role of therapy, but they’re long-term prospects and he needs some help now. So I’m hoping the medication helps — and trying gluten-free for a couple weeks.

When you eat as ***relatively*** clean as we do — Cheetos notwithstanding — going gluten free isn’t that difficult. Plus, we shop at Whole Foods, so… there’s that. I’ve looked at gluten-free eating and it doesn’t seem that bad. They have bread and cookies and stuff and I’ve talked to Mineral about making some changes. I’ve promised him I will do my best to make sure he has good food that he likes. Taco seasoning appears to be gluten free unless wheat is an ingredient — and I’ve not seen that on a label — and we have corn tortillas. He eats rice, and cheese, and the plainest peanut butter you can make — no literally; My Chemical Romance and the kids made it at Whole Foods. Peanuts. That’s it.

So we’ll give it a try, because even though he behaves horribly sometimes — and I struggle with separating that horrible behavior from HIM — he is my baby and I love him. I will continue to try to help him heal, and if he can’t heal then I’ll continue to help him learn to live a positive peaceful life.

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Mineral Monday: We’re going to San Diego!

… and also, eating issues.

My Chemical Romance’s grandfather died recently at the age of 90 years young. He is survived by his wife, four children — including My Chemical Romance’s dad — several step-children and lots of grandchildren and great-grandchildren.

My Chemical Romance really wanted to be there for the funeral, but his mom went one better (or six better) by paying for ALL OF US (except the dog) to fly to San Diego. I am so excited!

San Diego at night (Flickr: Michael McDonough)

I am so not looking forward to a long plane ride with five children. I can’t emphasize that enough. I am not looking forward to a five-hour plane ride with five kids. However, I’m sure the trip will make up for it.

Mineral has a lot of anxiety regarding plans changing, so he wants to know all about the trip. What we’re going to do and where we’re going to go, and with whom we’re going to stay and what we’re going to eat —

I digress: eating is a big issue right now. Mineral doesn’t eat much. His ADHD medication suppresses his appetite — which totally sucks, because he’s already underweight. Then, when he’s coming down off it, in the the evening, dinner is a battle.

If dinner is not one of the few things he likes (hamburgers, hot dogs, tacos, quesadillas, fried chicken, noodles, eggs, bacon, pancakes, waffles) he gets extremely upset. And he expresses that unhappiness for the duration of the meal. Then he wants to know what the next night’s dinner is, and the next night’s. And if those meals aren’t things he likes, his tantrum continues.

Flickr: Kevin Dooley

I try for an every-other-night approach for meals he will like, but sometimes I get sick of hotdogs and macaroni-and-cheese. I’m not sure if I want to make him his own special dinner — he already gets a lot of allowances for his ADHD, and often the other children will skip a dinner if they don’t want whatever it is. Or just try it. Or sit quietly with us.

Also, if I don’t feed him, he will take food from the pantry up to his room and eat it. Or take food to the bathroom. Or the guest room. I find various food — mostly bread — all over the house. Then I feel bad because he’s skinny and hungry and I’m not feeding him enough.

Writing this out makes me realize that he probably needs his ADHD medication twice a day. His doctor had prescribed that, but I was hesitant because it keeps him awake at night. He suggested giving him half the medication in the afternoon, to see how that works. I think I will try it.

 

Letter from Mineral’s Service Dog

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

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Previously on Cinco de Mommy: My son, “Mineral,” has special needs.

Animal just looked at this pic and said, "Wow, he looks like Abraham Lincoln!"

Ever since Megan the Service Dog trainer determined that Mineral would NOT benefit from a service dog — or wouldn’t benefit enough to warrant the investment of time, money and energy — I’ve been dreaming that she was wrong and a dog would help him.

And, honestly, if I had $20,000 to pay, I could probably find a Service Dog company that would give us a trained dog. Indeed, there are several companies that train dogs for children with psychiatric issues, sensory processing disorder and autism. And while his special needs don’t fit into a precise label or box, he has some aspects of those disorders.

Sometimes I get lost thinking about what he needs from a service dog. And what we as a family need in order to add a Service Dog to our mix of five homeschooled kids in a rental house with a large fish tank — as well as another dog.

In my fantasy, the Service Dog would arrive on our doorstep one morning. He — I imagine it’s a he, and after doing my research on Service Dogs, I imagine him as either a Labrador retriever or a golden retriever — would have a note with him:

Hi there! (credit: pmarkham/Flickr)

Dear Family,

I am a Service Dog for Mineral. My name is Lego (because I was trained to help Mineral, and he loves Legos). I can do the following: help get him out of the house by exercising me, help him focus by working with me — and also distract him from his obsession with media or when he’s going to have media.

Although I am Mineral’s Service dog, I will appreciate some attention and love from the other children. Also from Maizey, the Dog Without a Downside. I will play with her –hopefully I can be a positive influence and she’ll stop barking her head off every time the baby is taking a nap.

Remember, I need to be brushed, washed and groomed regularly. I need to eat twice a day and have access to fresh water that the baby doesn’t play in. I need to see a vet once a year and take heart-worm prevention and flea/mosquito/tick repellent. I am a living creature and I am Mineral’s responsibility. Owning me, he will learn some empathy, which I know he lacks.

In return, I will stay by his side. When he is having an outburst and needs to calm down, he can pet me and/or talk to me. When he’s relaxed, I will sit by his feet while he does school work, or eats his meals.

(credit: Calsidyrose/Flickr)

I will bark to remind him of things. Bark! Sit down at the table with the rest of the family. Bark bark! Don’t aim weapons at people or animals or other living things. Bark bark bark! Wash your hands and change your clothes. Paw on his leg — stop compulsively licking your face. Jump on his chest — stop talking about MEDIA.

I know that every day with him is different, and most days are very challenging. I hope I can make him smile and ease his mind of his anxieties and compulsive thoughts — and behaviors. I aim to mitigate his outbursts, particularly the violent ones.

I know that Mineral has speech therapy, cognitive/behavioral therapy, occupational therapy and takes psychiatric medication. I hope I can complement those therapies and see you implement the most helpful suggestions and solutions.

And also, since you’re going to pay $20,000 for me and still have to pay for my food and dog toys and treats, I will bark four times after I finish vacuuming the entire house, mopping the kitchen and cleaning the bathrooms.

Sincerely,

Lego

***

Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

(This list will be live and updated by afternoon March 13 with all the carnival links.)

Mineral Tuesday: Media

One thing that Mineral really really cares about it media. By “media,” I mean anything that gets plugged in to an electrical outlet or uses batteries and has a screen.

As you may have guessed, I am not a media-free mom. I watch TV. I watch Netflix. I am on the computer and my phone more than I think I **should** be. I’m fine with my kids watching TV or playing on the computer — after they finish whatever we’re doing for the day. (It always includes chores, and usually some form of learning, although yesterday was watching half of “Food, Inc” so they could learn about where our food comes from.)

Meanwhile, Mineral starts asking about media from the moment he wakes up. “Can I have media, mom? Can I play on your phone? Can I watch TV?”

Every single day is the same. Same rule. Every day. And yet, every day he asks. I wonder, is this a normal kid thing, or is it just him and his issues?

Typically, I let the kids have media in the afternoon — when My Masterpiece takes a nap, or when Cousin It and My Masterpiece take a nap. Once in a great while we have a completely media-free day, in which the kids bounce around like crazed animals and do a lot of drawing and reading and building with Legos and watching the fish tank.

Yesterday Mineral had a massive outburst. It seemed to go on forever. I haven’t seen an outburst like that in a while, and it really freaked me out. I try very hard never to show how his outbursts upset me, but inside I’m alternating between being angry at him and feeling sorry for him. I’m also worrying about the effects of his outburst on the other kids.

I’m also thinking, Is media so bad? All of the consensual living and radical unschoolers would say it’s totally fine for him to have media 24/7, that he will SELF-REGULATE over time. But they don’t know my kid. I know my kid. The self-regulating would probably take a decade and a half.

I actually took out my phone to video him for his therapist and his psychiatrist, but he pulled himself together when he realized what I was doing. He said he would be embarrassed for them to see him that way. I said that if they could SEE what happens when he has an outburst — which usually don’t occur when we’re at a doctor’s office — perhaps they could help him more. But it didn’t matter — there is no debating with Mineral. There is no reasoning. There is no logic. There is simply him, and his compulsive thoughts about what he perceives is happening in the world.

It’s usually not happening in the world.

Mineral Monday No More

Well, the first ever Mineral Monday turned out to be the last —

and yet, I raised $200 in that time.

I refunded it all, of course, with a nice thank you note to everyone who donated. Duh. Of course, there probably are some people who wouldn’t have refunded it, but do I really strike you as one of those people?

What happened was this: Megan, of Triumphant Tails, met with us three times. The first time with all of us, the second time with just the kids and me during a “normal” school day and the third time at Costco. She noted immediately that Mineral has severe ADHD. She also noticed his other issues — I guess the best word to use is SENSITIVITIES. He cannot control his emotions when his senses get overwhelmed (which is constantly because he’s so sensitive. And repeat.)

I literally cannot stress enough how sensitive he is — and it’s in ways that make absolutely no sense to you or me, yet it’s impossible to reason with him about these sensitivities.

Imagine if Hillary Clinton was living with Ann Coulter, and every time Hillary said something, Ann Coulter cried and went to her room — or had a violent outburst, either toward Hillary or someone nearby Hillary. Or toward just any old thing that was in the same room. Now imagine Ann Coulter had some talisman and when she was without those talismen, she behaved in ways that were not socially appropriate. The entire world is Hillary Clinton. Mineral is Ann Coulter.

After the second time we met, Megan suggested that we start fundraising, since a Service Dog is expensive. After emailing the few people I knew who have any kind of fundraising experience, I made a gofundme.com page and linked it to my personal Facebook.

  • The first donation was from an amazing woman named Joy, who I’ve “known” in the online world since Animal and Mineral were little babies.
  • The second donation was from My Chemical Romance’s sister, Julie, whose husband is currently training with the Army, while she’s home taking care of their son — and is pregnant! (I have three nephews, I’m really hoping for a niece.)
  • The third donation was from a friend of Julie’s, who saw the information on her Facebook page. How generous is that — we don’t even know them personally!
  • The fourth donation was from a homeschool mom who has taught Mineral twice in co-op. He loves her classes!

We met with Megan again on Friday, spending an hour in Costco with five kids, three adults and two service dogs. Megan helped Mineral work with one of the Service Dogs. Later she broke it down for me: She doesn’t think a Service Dog will help him ENOUGH to make the investment of time, money and energy worthwhile. Even when he’s on his ADHD medication, she thinks he lacks the focus to train consistently.

I can see that.

Further, she thinks it will be difficult within our family — for Mineral to have a dog that’s “his” yet still have to share it with the other kids, and for the other kids to see Mineral get a dog.

I can see that too.

She said that while she could get a dog and train with him, the effort would mostly be mine, not his, and that she didn’t think it was worth the time and money and effort I’d end up investing.

Ultimately, she’s the expert, and I think she’s right.

I was totally bummed out at first. But really, I just wish there was something — SOMETHING — that could help him be more “normal.” Occupational therapy helps, as does psychotherapy (his therapist recently said on the phone to me, “He’s REALLY sensitive,”) and speech therapy makes him better able to communicate. Psychiatry provides him with the meds that keep him as focused as possible. But even doing all that, he struggles, and I struggle as his mom.

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