The Surgery

Who doesn't know that the Cat had surgery on the 10th? Anyone?

We have known about it for a while. The Cat has been anxiously awaiting the day. And by that I mean that with each passing moment her anxiety was building until it was bound to explode. Boy did it. All over the check out lane at Fred Meyers on the 9th. And all over me, and Grandma Fuzzy, and Grandpa Musher. Everything that was said to her that day set her off. It was meltdown central here for about 9 hours. Seriously I think Hiroshima had less damage. By bedtime that night we were all so totally DONE.

And just think, the Cat, Grandpa Musher, and I all had to be up by 6 for her surgery. Needless to say, with all the anxiety, there was not much sleep to be had. I didn't even try to fight it. I knew I was beat. I let her stay up and FaceTime her cousin, jump on her trampoline, watch movies, anything that kept her happy. Winx Club was my saving grace that night.

Come morning things were not much better. The Cat was exhausted and wanted nothing to do with leaving the house, much less anything coming out of my mouth. YAY!! We got to the surgery center at 7 for an 8 a.m. procedure. 

 new jammies for recovery. purple and fuzzy

after the sedative waiting to go to the OR

The staff at Alaska Surgery Center were so great with her. I explained to them my concerns about the mask for the anesthesia with the Cat's sensory issues. They gave her a mild sedative before taking her back into the OR. They waited to start the IV until after she was out.

The surgery itself was a breeze. The Cat came through it like a champion. She woke right up afterwards and was ready to go home about an hour and a half after that. We were out by 10:15, seriously that quick. It was great!

in the recovery room 

We got home and that is when the real fun started. The doc had given us a script for painkillers, and told me to alternate between the script and the OTC every 3 hours. No big deal right... NO!!! I had to wake her up every 3 hours all night long. And the painkiller taste horrible, so getting her to take them has been a battle.

She was so mad at me for making her take the meds that she refused to speak to me. She started texting me. Now I know that her throat hurts, making swallowing difficult and that plays a part in not wanting to take the meds as well. But here's the thing. I have never had to fight with the Cat to get her to take meds. She has always just taken them no problem. I consider myself very lucky for that. Now I have to almost hold her down to get them into her. 

I would just let it go, but without the meds she is screaming in pain and completely uncontrollable. There have been more than a couple of meltdowns from the pain, the "glob" in her throat that won't go away, the taste of the pain meds, and trying to get fluids into the poor child. My heart breaks for her it really does. But what else can I do?

Luckily today she started to feel better... It's back to school on Tuesday

And then it's a mini staycation for me!!!

The Re-Model

I did it!! I got the re-model done before the Cat had her surgery.

She loves it!!! It was a HUGE success.

There was a long process in the re-model. I wanted to give the Cat a fair amount of autonomy in making decisions regarding her room. I mean it is her room, and the point of this endeavor was to make it more friendly for her. So it makes sense to allow her to make most of the decisions.

The first thing we had to do was pick a color. The Cat is fixated on purple. Everything has to be purple. Her pajamas, her cup, her tent, her sheets, her toothbrush, shoes, snowpants. All PURPLE. So what color is her room?? Take a guess... Any guess... I will give you three chances...

Yes it's PURPLE... GOD SAVE ME FROM THE PURPLE



Once we had the color chosen came the monumental task of cleaning the room. I know that many an ausome child is very clean and organized. That is not the Cat. I can't be the only parent whose child can't break down tasks enough to be able to clean a room. Please tell me I am not alone. I can't be alone. Someone come join me in the swallor that is a child's messy room. Don't leave me alone here. It might eat me.

Once the room was clean, the Cat had to sleep in my room. That was so much fun... I got soo much sleep those 4 nights that I don't think I could handle repeating it. (If you can't read the sarcasm there you are on the wrong blog)

Then it was time to spakle the holes and begin painting. Wanna know how to frustrate a child in 1 easy step. Tell them they can't help paint the room. Trust me this was the best choice. If the Cat had been allowed to paint everything in the house would now be purple.

Before the actual painting of the walls though came the ceiling! That was the best part of it. Coming in a close second was the moving of the furniture out of the room, and in third taping everything off. I tell you what, I just cannot wait to paint another room.

But once that was all done the painting began.

storing things in the closet while painting

 All ready to paint

 told you it was purple

oh so purple

After the painting was done, we had to put everything back. It took about a week total to do from start to finish.  Still waiting on the padded floor mat to come in, and we have added a poster and a buttload of glow-in-the-dark stars. But it is done. And totally worth all the muscle aches. 

Just after the room was finished a good friend Dr. F and his wife gave the Cat a fish tank. Can guess what kind of fish she wanted in it?? If you said purple you win the prize... An ausomly autistic child of your very own.

Can't really see in this picture, but we did actually find purple fish. (Multi-fruit tetras for those who are interested.)

The Cat is in heaven! 

Teaching Some Lessons Part 2

Ok guys I am back. Sorry for the long hiatus. I know this post has been eagerly anticipated. We've had a lot going on in the world outside of my computer. The Cat is currently recovering from her surgery. She is doing well, but who would have thought the biggest battle would be getting the pain meds in her. That's another story though.

We left off with how to organize all of your documentation and what you should have. I said I would pick this one up with making a plan for your meeting. This is very important. You want to be the one leading these meetings. Not a by-stander with no useful input. This is your child. You know your kid better than anyone else. You have lived with this child for however long. Do not ever EVER ever let the school or anyone else try to tell you they know what is best for your child. In order to lead the meeting you have to know what you want to discuss, and you must have the documentation.

So again I will wait while you all go grab your pens to take notes. We all know that everything I am about to say is of dire importance. Some importance. Ok probably review for most of you, but important to some newbies out there, or even vets that are going in to battle for the first time. Go on now. Don't forget I said there was a quiz at the end.

Got your pens? Waiting with baited breath to read the next words of utter wisdom spewing forth from my fingertips? ;-)

In order to make a plan you must first know what you want.

Do you want accomodations? Which ones? Why? How will they help? Are they reasonable? Are you willing to compromise on any of them? Do you want an evaluation? Re-evaluation? Based on what?

HUH?? WTH are you talking about?!? How the fuck am I supposed to know any of this? I am not expert. The schools are the experts. Right?!? WRONG!! So so wrong. You are the expert in your child. You know what works, what helps, what hurts, what is not gonna fly in a million years. Trust your gut. You know this. And if you don't because like me you were thrown in to the deep end of the pool and expected to swim, then ask. Ask your friends, ask your child's therapists, ask doctors, do some research. Don't be afraid to reach out to organizations like the Disability Law Center or Alaska Youth and Family Network. These places have great resources and can help you figure out what it is you want to accomplish with this meeting.

Once you know what you want you have to figure out what the school is going want.It really does help to be able to see both sides of an issue. If you know where the school is coming from, then you can frame your argument around that. Make them see how doing this will benefit them.

For instance, I knew that Bird Lake was keeping the Cat out of her class because there were parent complaints about her meltdowns in the class. They were concerned with the amount of time the Cat was disturbing the education of the other students. I wanted the Cat in a self contained classroom, because I knew there was too much sensory stuff going on in the general ed class. I used the knowledge to get what I wanted. I pointed out that if we moved the Cat to the SPED class that she would no longer disturb the other children. I showed them that her education was not the only one being affected, but that the entire class was being disrupted. I won!

Next you have to figure out what you are willing to compromise on. You cannot reasonably expect the school to give you everything you want. They have budgetary restrictions, and other such nonsense to be concerned with. So, be willing to move a little on somethings.

The Cat needed a BHA to be successful in the mainstream class.The intent was to allow the teacher to keep teaching while the BHA helped the Cat calm down after a meltdown, help identify triggers, and many other wonderful things. I miss her so much... (not my point) But the school could not afford to provide a 1:1 aide. So I did. I found AK Child and Family and they provided the BHA. I wanted it, the school couldn't afford it. I gave a little and I provided it.

Bird Lake had a no gum policy in the school. The Cat likes to chew gum after a meltdown, or when escalating because it helps her get some needed sensory input. I provided documentation to this effect ( a letter from her OT). The school did not want gum. I found something else that would provide the same input (jerky). Compromise be willing to give a little. It will go a long way. Trust me.

Once you know these things you can set the agenda for the meeting. Make sure you send this out to the school about 3 days before your meeting so that they can be prepared as well.

I think that's everything. If you need more info just ask. I will cover other topics as requested.

QUIZ TIME:

If you made it this far then you pass and get an A when you smack down the staff at your next IEP meeting.

GO ROCK IT OUT!!