When life hands you lemons…

I’m back, mostly. Maybe not as frequently as I might like at this point, but I’m back anyway.

My surgery was a little more complicated than we originally thought. The good news: NO cancer. The bad news? My bladder was completely adhered to my uterus and was in serious trouble. They fixed that while they were in there, but DUDE… OUCH. Instead of being out of work for 2 weeks, I will be out 6 total. Thank God for Short term Disability benefits.

Hubby had to reschedule his surgery due to my complications and some newly developed high blood pressure… Anyone see a relationship there? He always said that I raised his blood pressure, but I never believed him until now! His surgery was rescheduled for the end of the June.

THEN.. Yes, THEN… Turns out the woman who owns the house we live in has not been paying the mortgage with our rent money.. That means the house is in foreclosure, was sold and we are now having to vacate the premises by June 17th. Yeah. Oh.. let’s not forget, find a house big enough for us, in a decent neighborhood, with rent we can afford, and make up a first months rent and deposit by then. AWESOME.

Hubby has now rescheduled his surgery until the end of July, so that we can move. Poor guy.

We have found a home and are in the process of packing.. Which sucks. BIG. Like REALLY big.

THEN.. oh, yes.. another THEN. Moosey was running around the driveway.. barefoot, of course (WHAT??? I hate socks, remember???), tripped and fell on a metal bracket from the shelves we are taking down in the garage. He gashed his foot open and we spent the better part of our afternoon and evening at the ER debating stitches vs. glue vs. who the hell knows what else, while steadily ticking him off by poking his foot. Good times.

Mad is all worked up because of the chaos and is starting to bolt out of the door, into the street, down the block, through the store.. wherever he can. He having a rough time. We are going to lose his home teacher we love so much.

Oh my gosh.. I need prayers you guys. And maybe some movers. Or a bottle of wine.

P.S : I love the new house! More details in another post.

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The poop hits the fan

Wow. Things are really about to go wild around here.

Turns out my yearly girly exam didn’t go that well. I’ll be having my internal lady bits removed the day after tomorrow.  I’ll be in the hospital a day or two and then home recovering for a couple of weeks.

Hubby will be having surgery on his shoulder May 24th. Old football injury come back to haunt him. Which of course sounds WAY more self-important than it really is. He’ll be in a sling for 4 weeks.

5 children, 2 of them special needs, 3 cats, 1 dog (sorta), and a house with a garden that still needs planted.. vs. … 1 armed Dad, and half a Mom. Game on, folks. Game on.

Anywho, If anyone should be so inclined to keep me alive for the next week to week and a half, please email me at cgillajs_5@yahoo.com. I’ll owe you one. Not that you want me to post on your blog. God knows, I make no sense.

Now for the Mad-Hatter silliness. At OT, he was to “color” a picture. All Mad wanted to do was to play with the Potato Heads his OT had brought in for later. He was really REALLY insistent. Finally, she decided to put a couple on the table in front of where he sat with the crayons. She told him to “Draw the Potato Heads on the table.” She then turned around to put away the mess from the Tunnel Crawl he had just completed. You guys, I knew he was literal, but not like this! He actually threw the paper on the floor and started drawing a picture of the potato heads on the table itself. OT turned around, saw what he was doing and cracked up. I think he followed directions pretty well! Touche, Mad. Touche.

So, I am still getting over the flu, and really distracted with the surgery business.  If I post infrequently, or even really small absurd posts. You’ll know why. I really hope to hear from some of you, I could totally use your help.

Everyone in Line!

Mad-Hatter has been on a roll lately. Probably a paper towel roll, but a roll none the less.  He has been showing us his sensory seeking behavior on a much more frequent basis. More than flapping, rocking, and paper ripping, I’m talking about weird noises, lining up everything that isn’t nailed down, and getting into danger.

I have gone through approximately 5 rolls of paper towels and three rolls of toilet paper in two days. While my family is large, and does indeed use a lot of these items, this is pretty dang excessive. I.E:

I was cooking dinner friday night. Some kind of shrimp, peas and boxes of Pasta Roni. Gourmet, I know. I had the boxes on the counter, and Mad came into the room. He didn’t say anything, just walked in, watched me stir the pot, then left. Until the time came for me to grab the boxes and add the contents. All of the boxes were lined up in a neat little row across the counter. Gee, I wonder who did that.

Went into the living room to call the kids for dinner. I stepped on a REALLY freaking sharp pointy thing. I looked down and saw a row of dinosaurs from one side of the room to the other. YEAH. Ok. Mad’s been here, I see.

THIS IS WHERE THE TROUBLE STARTS.

The kids weren’t in the living room anyway (of course not, they actually go play when I want them close). I walked down the hall and saw that Mad’s bedroom door was closed. This is NOT GOOD. This is like DEFCON  at our house. I tried to burst into the room to stop him from whatever he is doing that he shouldn’t be. The door slammed into something and I about broke my neck when I hit the door head first. (BTW, all of the other four where laughing their butts off. At least I am good for something, huh?) I push my way into the room ( I knew it wasn’t him behind the door, just an FYI).

I saw that he had ripped the screen off and was throwing the entire contents of the room out of his window. The window with the built in screens that he ripped… The window with the baby locks that he had disengaged…. People.. WTF am I supposed to do now?

I am out of ideas. We have door locked from the inside and require a key to open, on both older kids bedrooms, the bathroom and the front door. What else do I need to do here?? He can figure out how to unlock the doors if the key is nearby, so they are kept in our pockets. If he gets into the bathroom, he will clog the toilet, ruin all of the paper and cover himself in bandaids. I’m screwed here guys. I have no idea how to keep him safe like this.

He has been stuck behind the bunkbed and the wall ( ala Trouble a few weeks ago), locked himself out of the house, tried to give himself a bath in the kitchen sink.. TWICE, locked ME out of the house, broken a decoration and the new media cabinet, ripped his mattress… OMG, my head hurts.

Before anyone accuses me of not watching him (which is what I get from my parents and in-laws), I AM watching him. I am freaking always there. It’s like he waits for the 5 minutes I have to go to the bathroom, get the mail, switch the clothes in the washer and dryer, or am dealing with another child.

Anyone feel like giving advice? I can’t just sit there and stare at him, and that isn’t going to help him learn to be independent, either. Why does no one prepare you for the “child” proofing needed for these kids? Please guys, what would you do? What has worked for you?

Spring Planting

Do any of you garden? I do… at least, I do now.

I am trying really hard to plant a garden this year. I’m doing all kinds of research,planning and tilling, oh my! Let me let you in on a little secret. I HAVE NO F-ING IDEA what I am doing. None. Zilch. Zippo.

I saw these cute little pots at target in their dollar zone. They come with a little tablet like thing that swells and turns into dirt when soaked in water. You are supposed to soak the dirt pellet thingy in water, then pour into the pot. Then you open a LARGE package of seeds and plant 2-3 seeds in each tiny pot… DUDE. These seeds are about the size of the period right here–>. I’m supposed to plant 2 of those? When I ripped open the package about 20 fell in the pot… Freaking 2?

By my reasoning, if 2 is good, then the whole package is better, right? RIGHT? Um… My tiny little pots are all covered in green seedlings.. Like, seriously, the WHOLE tiny little pot. I have about 30 green pepper plants, 40 tomato plants, and don’t even ask me about microscopic strawberry seeds poking up. I’m totally screwed, you guys.

The main point of this post? Mad decided to help me. YEAH. I had a bag of carrot seeds and cucumber seeds on the counter. Also? A ginormous bag of potting soil. (I know what your thinking and you’re right).

All of the sudden, the sound of the running water (from watering the millions of seedlings) gets to me. I had to GO. I had to go RIGHT NOW. I ran to the bathroom and fumbled with the door lock. We have to keep doors locked from the inside and open them with a key – for safety. And because I hate cleaning up the mess Mad makes in the bathroom. (FYI, he ISN’T trained). SO anyway, I managed to unlock the bathroom door, and get in there. Just in time. While smiling the smile of those we have narrowly escaped total embarrasment, I hear a crash.. and giggling. LOTS of giggling. Also? That screechy “eeeeee” he makes when stimming. Hmm… That’s odd, I thought. What could he be doing?I finish my business, and get out of the bathroom. I ran to the kitchen and what did I see? NOTHING. That really isn’t good. Where were my seeds and my dirt?

OH CRAP.

My entire living room looked like a container garden after a twister. Dirt freakin’ everywhere. In the recliner? CHECK. Under the couch? CHECK. In my shoes? CHECK. UGH. Of course, I cleaned it all up and get him situated in front of Scooby Doo (darn the stupid dog).

Then it was time to take an inventory of what I had left. Half a bag of potting soil (that’s enough for now), tiny planters, packet of cucumber seeds… Where are the carrots????Well, long story short, I never did find the carrots. Check back in the fall after I harvest my living room carpet.

I suspect I will have found them then.

Seriously? Green?

Sooo.. I forgot to buy the stupid blue light bulbs..

Yeah. I had to call around to about 10 different hardware stores in my town to find them. So naturally, I panicked. What? You think I over-reacted? PSH.. I had made of thing of it on here, I HAD to have this dumb bulb.

I ran to the store, grabbed one, payed for it (Umm.. 5 dollars for a 25 watt bulb? WTF?), ran home, and began the installation process…

Please imagine this is my home ( I know, I suck. Words won’t describe though):

Notice the Christmas wreath. Yeah, I'm lazy. I'm also short.

You’ll see something unusual about my porch light. First, the claw like protrutions make it darn near impossible to remove OR install a bulb. Second, the bulb I had in there casts a yellowish light. It needed a new bulb anyway, so I got to work. Several drops of blood and missing flesh later, I had done it! The dumb bulb was in!

Now to stand back and admire my handiwork. Also, prepare short speeches about Autism for the questions that were sure to flood in (insert eye roll here). I stood back, held the papertowel to my wounds to staunch the bleeding, and what did I see?

CRAP!

DANGIT! The glass was yellow, not the stupid old bulb that was in there. Now I was freaking lighting it up green? What does green even stand for?  There was blue light shining in a craptastic pattern above and below the light… That counts right? I kept telling myself it was blue enough (totally wasn’t blue btw), and as long as the questions got asked, it was worth it.

Guys? Not one person so much as looked twice. My house looked like a box of crayola crayons. The green and yellow and blue, oh, don’t forget the red from my blood.

UGH. The kicker? It’s not bright enough to see the door, and since hubby works nights? I need to switch the dumb thing back to the regular bulb.

Thanks, Autism. You win. AGAIN.

A day of pride and celebration

I’m sure anyone who would happen upon this blog has heard of this awareness campaign. For those who haven’t, starting tonight and ending on April 3rd, families affected by Autism will change their outside light bulbs to blue. The idea is to create an opportunity to communicate and educate others about Autism. Hopefully, your neighbors, friends and family will ask why your house is blue, and you can raise awareness.

This is a campaign that originates with Autism Speaks, an organization dedicated to Autism awareness and education, among other things Autism related.

This is exciting for me. My first event as an official Autism Mom. A chance to help others understand that Autism is not always “rainman.” That while Autism affects 1 in 110, not every one of those affected children is the same. As a matter of fact, most of them are very different. That they are still people. That they still have feelings and emotions, even if some of them have trouble identifying feelings and emotions of others.

There seems to be differing opinions regarding this day. Some people stating that EVERY day should be a chance to educate the public. Some saying that Autism Speaks is hardly the most wonderful source of information and ideals within our community.

I can’t say that I completely understand the division. We are a community. I would even go so far as to say we are a family.  Naturally, every day should be a day for education and raising awareness but that isn’t always going to be enough. This reaches far and wide. It provides opportunities that we might not otherwise have.

But (and I realize I shouldn’t begin a sentence like this, but sometimes it fits), it is more than just education and awareness for me. It is PRIDE. It breaks down the barriers and stigma. We are NOT refrigerator mothers! We are proud of our children and believe in WHO they are. They are wonderful, fun-loving, silly, quirky and deliciously NOMable. Just like typical children. I want to shout that to the world!

I am not ashamed of my child and his differences. While I don’t believe that everyone who opposes Light it Up Blue are ashamed, I am going to take this opportunity to show the world the beauty that is my baby boy.

As for me and my house.. we shall be awash in blue. I will feel pride every time I drive past a house lit in blue, and I will cry tears of happiness as I watch the country join in my celebration.

Progress?

So, Trouble turns three today. That makes 3 children aged 3, that are not triplets. Yeah, that’s fun. Anyway, we had his birthday party on saturday, since today is well, obviously, a school/work day.

What I thought would be a small gathering of a few really close family members turned into a really LARGE party. 10 children, and about 14 adults. It was chaos to say the least.

We really did have a good time. Trouble lost interest in his gifts at the first sight of Buzz Lightyear under the paper. Moosey and Mad opened the rest for him. They loved it. And let’s just be real here, they are going to play with the toys as much as Trouble. So really it was their stuff too.

Mad needed to take some time away from the party. That was just fine with me. He would cover his ears or his eyes and start whining. Then I knew it was time for a break. I would ask him if he wanted to walk to his room with me. He always said yes. Then he would say “Squeethes” and I would give him some deep pressure hugs. Then he’d be fine and go back out to the party. I was so proud of our handling that situation.

Everyone kept asking him questions and trying to get him to play/sit near them/snuggle/eat. He was just getting so upset with them all. Finally, he put his hands over his ears and yelled “NO MORE QWESTONS!” WOW, good for you kid.

People, at least in my family, don’t seem to understand what this is like for us. We are perpetually on high alert. Always code orange, if not red. Where did he go? Did he take off his diaper again? Did he steal the paper towels again? What’s in his mouth? Is he going to be ok? Is insurance going to cover all of this? ANOTHER, waiting list? 4 appointments a week, home based teaching, etc. It never freaking ends. Is it enough? When is it enough? Am I failing him? Have I ALREADY failed him?

Then you add Bubba’s needs to the list. Kids at school seem to have taught him some really terrible terrible words. He uses them frequently. We are working on showing him how to control himself, but he has almost no impulse control. $300 dollars on prescriptions this month, these ones better help. 2 appointments this week. Teacher meeting. Reinforce behavior. Give visual clues for behavior (which we have to catch as it’s happening). Snuggle, deep pressure, breathing techniques. I didn’t get him help when he was little like Mad. I failed him for years… It could be easier for him. If only I had done something before.

Gertrude is not a little girl. She is heavy. Like her Mom and Dad. Not excessively so, just a little thicker. She is getting teased mightily by some little boogers in her class. How can I help her? She isn’t fat.. Have I failed her, too? I’ll kick those little booger’s butts.. ok.. I won’t. Now she’s crying again because she thinks she is fat and ugly and that she has no friends…. SERIOUSLY!! Is this my genes? Did I lose her in the shuffle? Shouldn’t I have taught her to believe in herself? Have I failed her too?

I suspect we are going to lose our house. I can’t make the payments with everything else that’s going on. I’m scared and burying my head in the sand. I can’t seem to make the money work out.  Between copays, medications, therapies, Mad’s other medical bills, my Medical bills and prescriptions, Hubby’s prescriptions.. food, broken cars, broken water heaters, two job loses. How far can it stretch? Another failure.

I get home from work and one hour later, hubby leaves for his job. I forget what his arms feel like. Does he still love me? Can we survive this? I want my husband.Why won’t he research this with me? Why doesn’t he ask questions? I don’t understand how this doesn’t affect him…I want my husband back. I WANT MY LIFE.

After that party, I slumped on the couch. Feeling like we have just celebrated another year of survival. I looked over, and there was Mad. Holding his Woody doll in his lap. He took Woody’s hands and made them bang on the toy keyboard. Did my boy just play? nah.. must be a coincidence. Aw, hell… “Mad, what are you doing?” He said the sweetest thing I have ever heard…

” Duddy pway punano” (Woody playing piano) OMG. I don’t even know what to say to him. I just stood up and started whispering for hubby to get in here. This was the battery recharge I needed. This is why I get up every morning and go to war. A constant internal struggle of what needs to be done vs. what I want to do. I never know if it is the right thing or not. The choices are mine to make, doesn’t that make the results my responsibility?

I’m petrified of another failure.

Would you like to play a game?

So, it seems that we have a new favorite game around my house! Are you excited? It’s really fun and apparently induces both manic laughter, and maybe a post-game nap…

Here are the rules of play:

1) Chew hands and feet off of all of the following found in a one room radius: baby dolls, barbie dolls, lego men, plastic farm animals, the tires off of toy cars (I guess this isn’t hands or feet, but work with me), doll house people, and most definitely plastic dinosaurs.

2) Pick up chewed on/mangled toy and state “dis broken. n da trash!” Then throw it away.

3) Laugh manically. Oh and LOUDLY. Can’t forget the loud.

4) Climb behind someone on the couch and just when they lean back (thinking you need some pressure), attempt to rip their hair out and eat it. Listen to screams of pain.

5) Laugh manically.

6) Climb down and pull off Daddy’s shoes. Sniff feet.

7) Gag. Then vomit from the gagging.

8 ) Laugh maniacally.

9) Play in puddle of vomit (Lord help me)

10) Lick everything within 25 feet of the puddle. (Not the puddle, someone will clean that up- Other players negotiate and determine who shall have the privilege. Rock paper scissors, maybe?)

11) While other players are negotiating puddle clean up duty, pour out all cups on counter, and empty a Sam’s Club size container of Kool-Aid powder on the floor. (Note: Powder must be red or no credit is given)

12) Play in Kool-Aid powder. Make sure you get enough on your hair to dye it.

13) Scream and cry when put in the tub.

14) Get dressed after clean up (you will remain red, FYI) and cry about having no toys to play with. “evryting broke.”

15) Scream horribly for an hour about no toys. Calm down and request “red shuce” (red juice= red kool-aid).

16) Scream when the clean-up players laugh maniacally. Oh yeah.. and LOUDLY.

Bits and Pieces

Oh, you guys.. ok..you..guy.. I seem to have one person read this consistently.. This is alternately frightening (since these are my thoughts, and not really about popularity) and AMAZING (cuz someone likes me!!).

After I last posted, we had another round of evaluation paperwork and another appointment. The evaluations showed autism ( I know! I was surprised too! *eye roll*), and the visit was another rollar coaster ride from hell.

You see, Dr. B decided that if Mad was pointing at the pictures on her walls than he probably WASN’T on the spectrum.. WHUCK?? Didn’t we do this the week before last, and then you changed your mind last week.. and now back to this? UGH. I think my brain imploded. She most certainly means well, but good gravy marie, this is ridiculous.

We had an appointment scheduled this month after an 8 month waiting list. It was for a really well known Dev. Ped. at a major university in our area. It is an hour away from home, so not too far, but not next door either. It would be a trek with a very stimmy, sensory seeking little boy… who unbuckles every five EFFING feet.. AHEM. sorry.. Got a little carried away. Anywho.. we asked Dr. B if we needed to keep the appointment. She said no. He was obviously on the spectrum, so it wasn’t really necessary. Okey dokey then. Hubby said he’d call the big university dev.ped. and cancel.

I went to last weeks appointment with Dr. B and after her announcement that he WAS NOT on the spectrum (oh, my blood pressure is rising again), I asked AGAIN (AAAHHH) if we should be going to the big university dev. ped. She said YES. Holy Mother, you have got to be joking me!

Fortunately, hubby is a notorious procrastinator and never called to cancel. For once, this came in handy! (Also, I like caps and exclamation marks – in case you hadn’t noticed). Out to — the big city– we went. Boy was that fun.

The appointment was LONG. More evaluations, more questionnaires, more simple games for Mad to “play.” The usual. Big City Dev. Ped asked all sorts of questions I have answered for 2 1/2, years, but with one major difference. He LISTENED. (<– see I used CAPS again). At one point, he asked about Mad’s sensory seeking behaviors. I was mid-answer when I looked over at Mad. There he was, on knees and elbows, tongue to the carpet, propelling himself along in one GINORMOUS lick. OMG.. SO NASTY. Big City doc saw this and says.. “HMMM.. I guess that’s a YES on sensory seeking behavior!” It’s also an understatement.

Big City Doc was surprised that Mad was not yet formally diagnosed, but could see the hold-up. Mad shows some joint attention, intermittent eye contact, and some social interaction. The difference between Big City Doc (BCD from here on out) and everyone else was that he felt the quality of Mad’s social interaction was very imature and superficial. Basically, it was a skill we have taught him and praised him well for, thereby making it hardly valid as a real social skill (Evaluation wise, anyway).

The long and short is this. Mad is now diagnosed as PDDNOS. BCD felt that he may later test as HFA, but for now, PDDNOS fits. The main point was that no one, until now, was willing to take the risk of “labeling” what may turn out later to be a mostly “typical” child after therapies and school. Sounds reasonable. Except, that without the label? He won’t get therapies and school.

Is it always like this you guys guy? Will it always be such a fight? Such a battle for my child’s life? I am about all done in.

The student becomes the master

I know I write mostly about Mad-hatter and autism, but I have other children. Children who are not affected by developmental disorders and delays. Children who go to school, learn things, do homework and then ask for my help on said homework… DUDE… Homework. I really thought I was done with that stuff. (sigh)

Gertrude is learning all sorts of ridiculous wonderful stuff that she will never use again need to be a capable adult. Unfortunately, we are now at the point where we must read a chapter in a text book and have her review our work before we can offer any assistance. I mean, seriously, what the heck is my third grader doing Algebra for? THIRD GRADE! ACK.

She is now officially smarter than I am. Maybe not in practice, in street knowledge or common sense (DEFINATELY not in cleaning… If you open her door too far the rats might get out), but book smarts? She is kicking my hiney. I was in “Eagle” classes throughout my school career. I thought I knew everything important.. Really, I did (think that, not know everything). She shows me everyday how wrong I was.

For example, third grade in our city raises baby chicks from fertilization to early chickhood (or whatever it’s called, I’ll be sure to ask smarta$$ later). She has been talking about these baby chicks non-stop for weeks. Who was a yolker, who was a quitter (BTW, not very nice, egg cycle naming people!), who was pipping, etc.

Anywho, I decided it would be a good idea to make some egg salad the other night… Do you see where this is going? Yeah.. She was..displeased. Crying ensues. Tears, horror, drama…blah blah blah. I get her calmed down and explain, in her terms, that these eggs are yolkers. They never met the Rooster and aren’t baby chicks yet. She calmed down, and everything was LA DI DA wonderful.

She is watching me peel the boiled eggs, and probably hearing me say some bad words ( I hate peeling eggs, really I do). She comments on the “egg membrane” giving me some trouble.. Yeah, AMEN sister! Stupid egg membranes. I finally get this one egg down to just a tiny bit of shell. I rip that piece off, and a whole chunk of the egg white comes off with it… Of course it does. Why wouldn’t it. Gertrude looks at me and says

“You have some Albumen on you finger.”

AAAARRRRGGG.. What are you fifty? Go watch some iCarly or something would ya? I think I will seal her up in tupperware tonight to keep her young. She really needs to quit this growing up crap.

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