My husband gets home from work. He knows by my state of dress (true pajamas, not even yoga pants) that it’s a bad day. I’m laying on the couch tweeting from my phone because I’m letting the 5yo play Mario Kart just so I can rest a bit. My husband knows that I’m most likely not cooking dinner before he even asks. The question then remains, does he cook? Do we get take out? Or do we just go somewhere that has a kids’ night?

Often we opt for take out. There is a hoagie shop that one time I lost the dance, I clocked the mileage at 0.6 miles from our house. I had to laugh when I found out how far it is from the house because we often end up playing rock, paper, scissors to decide who goes to get the food. If I’m really feeling that poorly, my husband will just go. I’ve been fortunate to not have too many of those days lately, but at the same time it means that I have to negotiate to be the one to stay home.

0.6 miles. That’s our hoagie dance. What kind of dance do you share?

This feeling of the unknown also carries over to Kindergarten. Our younger son is transitioning from preschool to Kindergarten. I think the biggest challenge (besides getting the accommodations he needs) is to get the school to see past the autism to see the bright and sweet boy he is. He’s going to need challenged, or he’ll find his own way to stay entertained. It’s going to be interesting. Add to that his multiple food allergies, and this mama is just a tad freaked.

I was OK with the food allergies while the symptoms were all GI. We were out in public a few weeks ago, and the 5yo had a contact reaction. We were at an indoor play place. There were three birthday parties going on while we were there. There were children with food on the play apparatus. I have no idea what caused the reaction. The school serves peanut butter and jelly every day as one of the lunch choices. Elementary kids are not clean little people. So they could have a peanut free table for our son until the cows come home, but that doesn’t eliminate the threat of a kid who had one of his allergens on their hands and then left residue in the bathroom, on a door knob, or elsewhere in the classroom. Even if they have the kids wash their hands, unless the teacher is going to inspect every set of hands, I’m worried about another contact reaction. Peanut butter doesn’t always come off with a regular hand washing if it gets stuck in your cuticles or under the nails, as I’ve learned when I have baked with it in the past. And a citrus fruit allergy. There is citrus fruit in place you’d not thing it would be. Is everyone going to read labels, check for may contains? So many uncertains.

From what I’ve gathered so far, there is no formal process for middle school transitions. I need to get on this because we need to know what building my older child will be in next year so when we write his IEP this Spring, we can write an appropriate IEP. Otherwise, I”m going to have to pull everyone in next September.

For Kindergarten, I’m going to have to see what the school feels falls under FAPE. What do they feel is the least restrictive environment? Can they accommodate my child’s needs so he can be the most successful student he can be?

These are just a couple of the things that keep me awake at night.

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Knowledge is Power - IEPsEleven Years

I’ll start with Zach, my Aspie. He’s currently a 5th grader.

A. Tools/Assistive Devices: Zach has fidgets and a chewy of his choice written into his IEP (I will be pushing harder for more socially acceptable gum as he transitions to middle school next year). This is the first year he hasn’t really utilized either, but he has expressed that he’d prefer to chew gum like he was allowed in a previous school in 2nd grade. It was a class wide thing his teacher did when the class did writing prompts that he found helped him. This school wouldn’t allow it though despite the research proven it helps kids concentrate.

He has a notebook to write down thoughts instead of blurting them out in class. Also to draw and doodle because it helps him listen when the teacher is talking, and it gives him something constructive to do when he’s done with his work.

A checklist of what needs to come home every day on his desk.

This year’s teacher puts homework online, and she has gone the extra mile to put the spelling words for the week online with the homework since we have an issue with “forgetting” the list. I think it’s more because spelling is really easy for Zach and he finds the homework part tedious.

When there is a substitute, someone from the office checks in periodically. We’ve had issues with subs not having control of the class, and Zach will try to resolve an issue on his own when adults won’t intervene, and not always in an appropriate manner.

He is not to miss more than 5 minutes of recess for any reason. If it’s absolutely necessary that he miss recess, he may walk or jog around the perimeter of the playground, but there MUST be physical activity or he can’t settle to concentrate.

B. Services: We’re fortunate enough to get ABA therapy both through the school and our insurance. He gets about an hour a week through the school and about 2-4 hours a week depending on what we feel is necessary privately either in school and/or at home.

Aaron is 5 and currently in preschool. He is dx’d as “low functioning autism, but verbal.”

A. Tools/Assistive Devices: Aaron currently doesn’t really have a lot in this area currently, but we will be asking for A LOT for Kindergarten. His current class is about 15 kids to 4 adults. The environment will drastically change with 30 kids to 2 adults next year. Aaron does have an iPad that we use at home, and his speech therapist has used as a positive reinforcer and as a therapy tool.

B. Services: I’m going to group these by at school and outside of school. At school Aaron gets OT and speech therapies. His IEP says 1 hour per month of each. Yes, per MONTH. Ridiculous, I know, and I’ve been told, that’s about what I can expect anywhere. However, I think he currently gets a bit more since his classroom is set up in a way that both are integrated into his time in class. So, if the SLP is working with one child, and that child is conversing with Aaron, she’s also going to prompt him to interact appropriately. Both of the school therapists have been eager to continue what we’re doing privately.

Private OT – Aaron has made HUGE strides. His focus and our ability to help him calm using the sensory techniques the OT has taught us have been awesome. A 170 improvement from where we were. My complaint is that she was temporary and the facility won’t have another pediatric OT for months. Activities we have done in OT are practicing buttons, tying shoes, playdoh, putty, picking up beans and beads with tweezers, writing, flicking paper footballs, cutting with scissors, rice container, bean container, bead container, swing, brushing, joint compressions, tunnel play, drawing, coloring, mazes, dot to dots, lots and lots of writing and hand work. Aaron went into therapy using both hands. We had to choose a hand for him to write with based on which one was stronger. We went for 1 1/2 to 2 hours a week depending on what was open as far as sessions from August until January while they had a therapist for Aaron.

Private Speech Therapy – 30min-1hr a week. It depends on the schedule and how well Aaron is in a groove. Our therapist lets him set the pace which I like. She still  pushes, but knows when enough is enough. She also works with the school district, so I’m hoping for continuity of care when he starts Kindergarten next year. Aaron has worked on time of day- day vs. night, describing objects beyond shape, color and number, answering WH- questions, following multi-step instructions, describing a scene, and conversing for more than just a few turns, and ending the interaction appropriately instead of just stopping or walking away. The WH- questions has been huge.

ABA therapy – All privately provided by our insurance currently. Aaron gets roughly 4-5 hours per week at school and home. One day a week is at school, and one is at home since he currently only attends preschool 2 days per week.

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Tropical Storm Lee Remnants Wreak Havoc on PABrokenEleven Years

-I harassed all of our Congressmen with emails. Senator Toomey’s office responded, and one of his staffers will be attending the briefing on Caring for Military Kids with Autism Act with us. I know who I’ll be voting for next time around, and who I will NOT be voting for (looking at you on the Armed Forces committee Rep. Shuster).

-I learned that kids can make flourescent green pus come out of their eyes when they’re sick. That was a new and gross one. The doctor was rather impressed we’ve survived 10 years and 2 kids and this was our first pink eye incident. Having the school cal to say your kid’s eye is oozing was interesting. I swear he was fine when I sent him.

-Said pink eye child also coughed in my face while ill and I woke up Saturday with the worst sore throat I’ve had in a very long time. My throat was swollen. It was hard to even swallow some Aleve for the headache I also had. It was hard to swallow anything. After home treatment, it was no better after 3 days so I dragged myself to the doctor. I’m so very annoyed I did so as it was just post nasal drip. Post nasal drip wreaks havoc on the throat. I swore I was dying on Saturday. Since I’ve had my tonsils out I’ve not had many sore throats like that. Maybe three in the last nine years, so I was a big baby about it.

-Buttcheek is the new insult in our house. As in, “You’re a buttcheek head.”

-I woke up this morning with a runny eye. Since it’s been a week since we’ve had pink eye symptoms in the house, I’m guessing whatever cold this is going around, it’s a doozy to cause this. I’m hoping I don’t need the eye drops too. Really really hoping. I can’t be down and out another weekend.

-Autism is rearing its ugly head in our house lately. Normally it’s not a bad thing. Really. But the regression lately is tearing at me. I don’t know if it’s from being ill or if it’s just the natural life progression, but it’s been highly frustrating. We’re back to being in survival mode.

What’s going on in your neck of the woods?

The cough that’s been going around finally vacated my body, but has entered that of my 10yo. He sounds horrific, but have you ever tried getting a kid with sensory issues to take cough medicine? If not, I suggest you put it on your bucket list of adventures, because it is an adventure. Neither syrup nor pop rocks like crystals do the trick. Could they maybe make a chewable?

I get to go to the dentist later while everyone else stays home. It’s sad when going to the dentist means I get a guaranteed hour of peace while laying back in a chair. Too bad my spacer broke last week, and they’ll probably have to do some work on my mouth while I’m there this time.

See all the excitement you’ve missed? Aren’t you jealous? Tomorrow will be bittersweet. I’ll have to go through the morning routine with my 10yo (which he hates), but EVERYONE, except me, has somewhere to be, and I’ll get a few hours to myself to shower and pee with the door closed and no one banging on it.

Do you have plans for the first week everyone gets back into the regular routine again?

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FridayAnd The Band Plays On...Random Thanksgiving Blog Fodder

-Another post on why you shouldn’t work for free. This one had me at “..form of business sluttery.”

-I participated in the “Roast in a Post” at Collective Bias again this year. If you’d like to see the kind words Chacoy wrote about me, you can check them out on her blog, Living in LaLa Land.

-If you’d like to see my non electrical take on the birdcage lamp, check out my guest post on Home to Heather.

That’s all I’ve got. I hope you have a good holiday weekend no matter what holiday you’re celebrating (seems at least a couple are overlapping this year)!

This week’s Monday Mojo (yes I know it’s Wednesday, but you have all week to link up, remember?):

For this week, we would love for you to share a picture of your Christmas Tree (if you celebrate!) Also, let us know what your favourite holiday traditions are! I know I love to hear how other people celebrate. We can’t wait to hear what you do!

I finally decorated our Christmas tree the other night after much nagging from my 5yo. I put it off as long as I could because:

1. I wasn’t in the mood.
2. The boys can’t leave the $&%(% tree alone.
3. The lights on two branches near the bottom of the tree just poofed the other day (see $%*@) tree).

It’s not perfect, but it’s decorated. Next year, I”m going back to our regular tree that I have to string the lights on myself. It fluffs better (real trees make me itch). The bald spots on this tree are really getting to me. I’m glad we didn’t pay any more for it than we did. We’ve gotten our money’s worth, and I think it’s done. (Excuse the crappy cell phone pic. My camera has turned into a princess and will only focus when it wants to. Check out some of our ornaments.

Other traditions that we have include:

• pizza on Christmas Eve
• leaving beer and cookies for Santa (who wants to put toys together sober?)
• Welsh cookies
• pancakes for breakfast Christmas morning, made by my husband (the best part)
• ravioli lasagna for Christmas dinner (I’m the only one who likes turkey, and no one like ham)
• something crafty for when the kids are bored with their Christmas gifts to help maintain our sanity over their break

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-I still sound like I have a 2 pack a day habit with this cough.

-The kids are now getting it, and I thought the shenanigans were the usual full moon craziness, but it’s that plus the being sick sensory I’m going to make your day crappy stuff too.

- I need to get a new picture for my driver’s license. I like the old one, and of course my face is broken out, so the last thing I want to do today is get my picture taken.

-PR keeps sending emails for me to promote their contests on various client Facebook pages, post articles with pictures as compensation, or my favorite, the follow up to the press release. I’ve been sending Will Wheaton Collating Papers in return. Not everyone pays to promote products like the people who are signed up for BzzAgent. (I deleted my account with them yesterday for the purpose of it.)

-Don’t forget to support Caring for Military Kids with Autism Act (CMKAA) – H.R. 2288. It’s one click. 1 in 88 Military kids is autistic. 10% of those are getting services. Let’s work to make that 100%. Apathy doesn’t change anything.

When I talk to my friends who have kids that aren’t on the spectrum, the same sort of comraderie about the full moon just isn’t there. They claim their children don’t act any differently that week. So what makes our kids so absolutely crazy that one week each month? They must be werewolves? Right? That’s got to be it. I know, I know. There’s probably something scientific about the magnetic pull of the moon, etc., but werewolf is way more fun, isn’t it?

This monthly craziness made me totally identify with fellow author Kerry Ann Butler in Wit and Wisdom From the Parents of Special Needs Kids. Kerry Ann talks about how her son seems out of control during the time of the full moon.

The tribe has a choice name for her [the full moon] as well, but I will let you use your imagination for what we call her. I will give you a hint: she is as old as her profession. She is the reason my sweet boy will wake up at 2:00am laughing at her and then me because I actually say, “Go back to sleep. It’s still nighttime.”There is no time for sleeping when the moon is full and BSC-time [batshitcrazy] is to be had.

What I find absolutely awesome is that the professionals that work with Kerry Ann’s son get it too. They don’t look at her like she’s crazy when she mentions this particular phase of the moon.

*If you’d like to read more from Kerry Ann Butler, she can be found as co-author with her husband Paul at The Butler Way. 

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Friday

Before Images (Really after supposed fix #1 but it was still leaking):

Note flipped up and buckled shingles

Left side of dormer

Right side of dormer (supposedly fixed remember)

Front of dormer. (Note: flashing)

I’m guessing my roof was fixed again yesterday. I’m not sure since no one has communicated with me. The maintenance supervisor and a roofing contractor showed up, got up on the roof, there was some banging, and they left. It was obvious I was home since my front door was wide open, and my 5yo opened the back door to see what they were doing. I heard the roofer say something to the effect of “Well, if the wind didn’t get to it…” I stood in my kitchen thinking, “No, if you’d fix it right instead of just patching it and hoping it works…”  OK, and maybe there were some expletives in my head too at this point. My bullshit tolerance has been reached.

If this was my house that I owned, this would be totally unacceptable. I can’t believe Balfour Beatty is allowed to do this to our military families, and we have to pay them every month to live here. I think military housing needs to go back to the military. This isn’t the first issue we’ve had with them where something can’t get fixed right. See: Furnace, February 2009.

I’ve called everyone I can call, and no one is returning calls. I was nice, and I’ve done things the “right” way, and now I’m going to go to who gets results. We’re on month five. FIVE MONTHS. Can you say ridiculous?

This is what they did yesterday:

The white goop is the "fix." Note the flashing still. And nothing else was done.

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