Sunday, September 11, 2011

Never Forget 9.11

Cried just as hard today, 10 years laters, as I did the day it happened. Watching all the news coverage was heart wrenching. Tried to explain it to MM. Our babies will never have the innocence we had before that day.


It's a Grand Old Flag

Saturday, September 10, 2011


I really could use this gift card! All my bloggie buddies... I am the bonus choice of number six. Here is the link to the site

Thanks, thanks, thanks!


Monday, September 5, 2011

My Heart's Labor Day

Today, September 5, 2011 is a day that will be etched in my heart forever.

MM has developed a new fixation/obsession of collecting business cards & pamphlets from wherever we go. She reads the pamphlets, memorizing every detail of them. She then parrots the facts out to you & quizzes you several times throughout the day.

She got the pamphlet from her therapy place last Thursday. She has been reading it over & over, but oddly not one inquiry has come from her about that flyer. Not one until this evening.

It started when she was in the shower. She starts saying "I do not have artism" (artism is how she says autism). She often says this whenever she happens to sneak a peak at a report or hears me in a discussion. Again, "I do not have artism, I go to **certain therapy center**". I say, "Yes, you do go to **certain therapy center** and you do have autism". Then the conversation goes from her usual scripts/quizzes or even an argument of not having artism to this:

MM: What is artism?
Me: It is a brain disorder that affects how you see the world, how you feel & sense the world, how you interact & how you socialize and talk with people.
MM: Was I born with artism?
Me: :::long pause cause I still am not totally sure how to navigate this:::: Yes you were
MM: It is a brain disorder that I was born with
Me: Yes
MM: Do you have artism?
Me: No
MM: Does Daddy have artism?
Me: No.

She then jumps to another topic.

MM: Do I have cerebral palsy?
Me: Yes
MM: What is cerebral palsy?
Me: It is a condition that affects your muscles caused by lack of oxygen to your brain either when you were born or when you were in mommy's tummy
MM: You were pregnant and gave birth to me
Me: Yes
MM: Why didn't my brain get enough oxygen?
Me: They don't know for sure. Mommy was very sick & you were born early.
MM: My brain has enough oxygen now. I got cerebral palsy cause you took Zoloft (thanks lawyer commercials)
Me: LOL, no I didn't take Zoloft and yes, your brain has enough oxygen now. You know your friend H? She has cerebral palsy too. She didn't get enough oxygen cause when she was in her mommy's tummy her mommy had a bad car accident. You have mild cerebral palsy, she has severe cerebral palsy.
MM: Mine is mild, H is severe.
Me: Yes. That is why you were DAFOs & why you go to therapy. You have all these wonderful people to help you get strong & do all the things you can do. But your cerebral palsy is what makes it hard for you to write, snap & unsnap, zip, put on clothes, walk long distances.
MM: I can run fast.
Me: Yes, honey you can, the fastest. You can do anything you want to do, just sometimes you need a little more help.

MM: You have asthma.
Me: Yes.
MM: Were you born with asthma?
Me: Yes.
MM: Will I always have artism & cerebral palsy?
Me: :::swallowing lump & keeping the tears from creeping up:::: Yes.

By this time, we are done getting her dressed. She jumps up off the bed and starts in her typical language stimming voice "I have artism & cerebral palsy. It is mild. I have mild cerebral palsy. My brain didn't get oxygen" and then she continues to repeat it for the next 10 minutes until Wheel of Fortune comes on.

God bless her. She some how had a real conversation about it. I don't know if she fully understands it, but I think she does. I was totally caught off guard & not ready. I tried to be matter of fact and honest. I somehow got through it & didn't cry. Till now. That break in my heart just tore right back open, just as fresh as the days I found out about each of her diagnoses.

It just feels wrong having to explain brain injury & brain disorder to your eight year old, especially when it's hers.

Sunday, February 6, 2011

Those Dreaded 3 Letters

I can't believe it. Time sure has flown by. It's been a year already.




Trying my best not to stress. Haven't spent days & days preparing like I've done in the past. I'm hoping my reverse strategy works & that I come out with more since I went in with way less. Will let you know if my plan backfires.

To all those who are getting IPADS for their children for school use, I am sooooooo green with envy! I can only dream....

Saturday, January 1, 2011

New Year New ?????

Well, I posted in September about all that I was going to do with the blog, etc.

I obviously haven't done it. I haven't done much of anything really. Head in the sand, trying to get by, day to day living.

We are here. We have good days & bad days. We go through patches that are much rougher than others.

We've had quite a bit of illness lately. The delicious clarity after illness often carries me through the sickness. I loathe when she gets sick, but enjoy the time after. I wish they could figure out what causes it & bottle it. I know my child is special & amazing. When she is "here" it is icing on the cake. I wish you could really see the difference. Those who have experienced it understand. A glimpse of my girl without autism.

We go see the specialist this week. We are very concerned about her CP. I know CP doesn't get worse. However, she has grown six inches this last year. She keeps falling lately. I am hoping its an inner ear infection, off balance & its been bitterly cold outside thing, but I am afraid. She has always been one to want to walk everywhere until exhaustion. She is now relying more on her wheelchair when we are out. I worry that her cords are getting tighter. I am glad we have the appointment coming up sooner than later. I hate worrying needlessly. I always feel like I am sitting waiting for the proverbial shoe to drop.

IEP time is coming. IEP time is coming. AND surpise!!! they didn't do several things listed. I am so disillusioned with the school & the state. I filed that complaint & they rushed to put a bandaid on the six inch gas. State felt the bandaid was good enough. We are still bleeding all around it, but hey, they DID put a bandage on it! ARGH!!! Will let you know what happens there.

Hope you all have a happy new year & that if you make resolutions, you are able to keep them.