Birthday Party at the Giant Rat's Hole

Nice pic I found of the Rat!

Why is that things that are supposed to be simple are not? At least they are not when it comes to ASD and CP. My brother invited us to a birthday party for his girlfriend's daughter- it was at the hell known as Chuck E. Cheese. We talked about it all week & she actually wanted to go. She did remarkably well for how busy that place is. I had to stay with her the entire time while the other adults let their children run and play. They sat around and socialized; I ran interference for my child. She did well until that giant rat came out. It got louder and louder. I ended up sitting there with my hands over her ears. She still kept it together until the very end. It was getting super crowded by then and I was over stimulated myself (I can't believe you can't turn those damn tickets in for valium- LOL). Just once I would like to know what it is like to just be able to go somewhere & know she would be okay. Other kids are running & playing while I had to carry her many places, lift her up to things & help her learn how to wait our turn & put tokens in machines. It just comes so easily to many- I saw 2 year olds able to do these things with ease. ***SIGH*** BUT I guarantee they don't appreciate all the small things like her eating almost a whole cupcake by herself and just actually GOING to Chuck E Cheese! Woohoooo!

APRIL IS AUTISM AWARENESS MONTH

What is Autism?
It is a complex neurological disorder that usually lasts throughout the person’s lifetime. It is the fastest growing serious developmental disability in the U.S. ASD impairs a person’s ability to communicate and relate to others. It can also be associated with rigid routines and repetitive behaviors. It is a spectrum disorder so symptoms of ASD can range from very mild to severe. It affects 1 in 150 children, with boys four times more likely to have ASD, making it more common than pediatric AIDS, cancer & diabetes combined. Right now, there is no cure. Early intervention instruction focusing on communication, social & cognitive skills has been shown to result in significant improvements for many children.

Has it been since February???

Guess I am a bad blogger. Time just gets aways so quickly. Things continue to be hectic here, mainly with my health. MM is doing fine, except for the bout of strep throat with horrible rash she has encountered this week. My health- ugh! Some tests have come back, had more this today. It is looking like part of this is my kidneys & the other is tumor/mass thing is still being investigated. I am very scared, but hope that things will be figured out soon & what course of action to take to get me well.

I have spent the month tagging clothes & toys to particpate in a HUGE consignment sale. I dropped the stuff off today. It really is a good sale cause I will get 70% of my prices, unless they make it to half price day. I had around $700 worth of stuff!!! Yes, you read that right! Way too many clothes & toys, but I also got rid of all my baby stuff like maternity clothes, diaper bags, baby bedding, etc. With the news of my kidney problems, there is no more hope in us having another. We didn't really plan on having another since can't get pregnant without meds, my pre-e was so bad & with all MM has going on, but I still held on to stuff "just in case". It makes me sad to think I really can't have another. Another crappy part of my life- thanks for having bad luck in my health!

Haven't done much for Autism Awareness Month since so much going on. I did pass out ribbons for all my coworkers, wrote an article for the monthly newsletter at work & composed a mass email. I feel I need to do more, but just am exhausted. I guess the daily grind of MM's ASD is enough for the moment. She really is such a sweetie. Her progress is amazing! I still can't believe the progress she has made recently. Her language is developing so nicely- not always script, more spontaneous speech. Her fine motor skills are still poor, but that is CP too. She does have a lovely keyboard at school now. She brought home TWO pages of typed things today! She was so proud & I am too! I LOVE YOU, BG! (which now means Big Girl, not BABY girl as I am reminded by you a few hundred times a day)!

BIG NEWS & Catching up

First of all, I have been remiss for I have been very sick. STILL very sick. Started off with a virus & pneumonia causing my asthma to go haywire & was hospitalized for the week of Feb. 4th. I had a rough time, including having an allergic reaction to one of the few antibiotics I was not allergic to, but am now. My immune system is messed up again. I am also having heart & blood pressure problems. My heart keeps racing & my bp won't come down. It is dangerously high, even on THREE meds. UGH! I have been off work all this time. I am afraid I am going to have a stroke. They might put me back in the hospital this weekend if it doesn't come down. I feel awful, but wanted to post about somethings as well.

MM also got very sick when I was in the hospital. She had a really high fever for several days. Since then, she has been a different child. How you ask? She is acting like a typical 3 year old (now I know she is almost 5, but it is progress). She has lots of eye contact, spontaneous speech & using pronouns, not talking in third person, minimal stims & flapping, doing things for herself, etc. I can't explain it. It is like a light was just turned on. She is also now OFFICIALLY
PEE-PEE trained during the day! She hasn't worn a day pullup since last Friday- so six days! It is wild.

We had our appointment with the physiatrist today. She couldn't believe it was the same child. She gave me a study about how kids with ASD "clear" with a fever. She said enjoy the moment & celebrate, but it will probably go away. I don't care if it does. I can live the rest of my life with this "5 minutes of something wonderful rather than a life time of nothing special". It is enough to sustain me. It feels great to see her acting & doing like a typical child. She also tested her & she has had a bump in her skills with how clear she is. She tested at 36 months rather than the usual 18-24 months, with some 30 month skill. Almost everything was 36 months!

I feel like I am in a dream & don't want to wake up, except for the pounding headache I have from my blood pressure...

I still need to update about our IEP, but that will be for another time.

Quick Check In

Knee still hurts... MRI on Tuesday.
Did NOT talk about kindergarten at IEP... too much other stuff to address...
Will post more later, no time right now & I am still ticked off about it. Let's just say I cried alot during the meeting. :-(

I've Fallen, but I had to get up...

UGH! I fell over 10 days ago. I was carrying MM down the steps while I had my slippers on. I slipped off the top step & slid down about four twisting my left knee. I saved her though, she did not get hurt in any way. It has only gotten worse- I finally broke down & got an appointment with the doc this morning. They think there is probably something torn in there- I have to have an MRI & get a knee brace. OH JOY! I don't have time for this. She said something about if it is a big tear= surgery & PT, small tear = PT. GREAT! Maybe I can schedule mine while MM has her's....

I was just reading people's blogs & comments about their backs carrying their CP kids. So, here I am, another casualty related to CP :P

Tomorrow is annual IEP for dicussion of what to do about kindergarten. Who has the bail money ready???

A Nice Blessing

Being on the road we are on is not easy. However, if we weren't going down this road, I wouldn't have met alot of the people I have. I have friends that I have met in person & on the net because of MM's CP & ASD. I guess it is a reason to be thankful for sure.

I just got off the phone with one of those friends. I was calling to check on her since she has been a little MIA. She had posted a quick blurb about going through a rough spot. In calling to check on her, she made me feel so much better. It is so nice to talk to people who just get it.

THANKS!