Saturday, August 29, 2009


Sometimes, life is full of irony. Just yesterday, my mom & I were talking about the NICU. One of my best friends at work has started working in there. She keeps asking me to come back & work up there with her. I keep telling her I just can't. She says sure you can, come on. My mom said "I think you have some Post Traumatic Stress from the whole situation with MM". I tell her maybe & we move on to another subject.

Today, Ellen posted a blog about an article on NICU & PTSD. It is a very interesting article. As I read it, some things really screamed out at me. (I am condensing parts, so it is not direct quotes from the article)

"Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected. The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events. And third, they often are given serial bad news. The bad news keeps coming. It’s different from a car accident or an assault or rape where you get a single trauma and it’s over and you have to deal with it. With a preemie, every time you see your baby the experience comes up again.”

Absofreakinlutely. Even six years later, I still feel traumatized. An emergent c-section & she was whisked away, not to be seen for over 12 hours by me. I still carry anger over that. I didn't change her first diaper, help with her first bath, offer her comfort when she cried. Some one else did those things. She spent her first night in this world with strangers. Some days, I can't look at her without thinking of her in that damn plastic box with doors. I couldn't hardly hold her, only touch her through those doors. I remember the IV in her head that made her cringe & it was blown. I told the nurse, she wouldn't listen. I stood there, watching the nurse attempt to flush it & saw my baby literally push up so hard from pain she hit the top of the incubator. I was told I couldn't rock her cause preemies don't like vestibular movement. It just kept on & on & on. I carry that scab with me. I wish it were just a scar, but I must say it is still a scab. Granted, it is getting to be a crusty old scab.

"The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. It may be that cultural roles compel the men to keep a brave front during the trauma to support their partners, Dr. Shaw said, adding, “But three months later, when the mothers have recovered, that’s when the fathers are allowed to fall apart.”

This sounds familiar. DH didn't really come to terms with all of this until fairly recently. I often just think he is keeping his head in the sand. Maybe not. Thanks NYTimes for giving me a different perspective on this. I need to be more patient with him, for he is suffering through this just as much as me.

"Later, mothers might experience “vulnerable child syndrome,” in which they become so anxious that a minor medical event sends them into a panic. Normal, everyday risks can seem life-threatening; “From the moment of their birth, and still to this day, we feel like we’re triaging everything and just hanging on"

I KNOW I suffer from the vulnerable child thing. A fever can send me over the edge with anxiety, stomach acid burning my throat, waiting for something bad to happen. It is never an easy illness for her, either due to her sensory stuff from ASD or she is really, really sick from her auto immune issues. I am also turdified she is going to have a seizure. She has NEVER had one, but kids with ASD and/or CP have a higher risk to have them. The hits keep coming too. I have recently learned that they can add another diagnosis to your child, even this late in the game. I do have to triage everything in her life: appointments, therapy, school. Which is more important? What do I need to focus on and what can I blow off? Although, I feel like I can't blow anything off for fear of not doing enough for her. I beat myself up pretty bad when it comes to her. How many times have I said I feel like I am just hanging on by a thread.

Now, I know why. I have had therapy. I can't remember if the therapist said anything about PTSD. It just hasn't really dawned on me. Until now.

So, can I go back and work in the NICU?

I. Just. Can't.

Sunday, August 23, 2009

PSA- off topic

I know my blog is about family, special needs, ASD, CP, etc, but the more I think about this, the more I have to sound off.

I have a friend who did an interview for a blog. She was asked some questions and answered them honestly, from her heart. She was in no way being offensive to any one. She was also stating an opinion. Of course, we all know there are trolls out there, lurking, waiting to attack at any moment. There was a comment left by a person who did not appear to be a troll. The person, however, did become offended by her opinion and went on to attack her in the comments & then in a post on her blog. My friend then felt the need to apologize profusely to this person & then posted an apology on her blog, feeling as if she had to do PR cause she is getting to be high profile.

I realize that the blogosphere reaches world wide. However, she & the commenter both live in the US of A. A place where we have the first amendment, entitling us to freedom of speech. See that first word there? Freedom. I am finding as I continue my adventures in blogging that many become offended by an opinion. I don't think there is anything wrong with having an opinion on a subject, one way or the other. As long as one is not spewing forth intentional hurt to others, I see no reason to attack. One should be able to state their counter opinion without being hurtful to the other person. Don't attack the person, argue your opinion. Simple points of debating 101.

It seems to me that we are causing ourselves to lose our freedom of speech. With so much political correctness, we have to censor ourselves so much. We are afraid to stand up for anything in fear of being criticized or attacked. I think that is why so many other countries hate us- we don't stand for anything. We back down. The principles this country was founded on have been compromised in the name of political correctness.

I believe you can't please everybody all of the time. However, please don't infringe on some one's freedom of speech. State your opinion, maybe use it as an opportunity to educate & move on. And as always....

If you don't like it, don't read it!

End of PSA

Thursday, August 20, 2009

The Party, The Bus & Other Fuss

I left it up to MM to decide about the party. She chose to go when she found out swimming was involved. I was so very proud of her for choosing to go to the party. It wasn't as bad as I imagined it was going to be. She enjoyed herself swimming. She swam through the crowds of people. She jumped off the diving board several times. She tried to cannon ball like the men were doing. She tried to give her mom a heart attack by wanting to go off backwards like the men. I am all for trying new things, but I wasn't ready for THAT! She enjoyed whacking the pinata. I only got a little sad a few times. First, when I saw all the other moms congregated talking while their children played with each other. I had to run interference for MM & she wanted me right there with her. Second, when all the children lined up to make their own cupcakes. Of course, they had a blast, getting frosting & sprinkles everywhere. She would have none of that, choosing to leave her cupcake plain & go inside for a glass of milk. The last time was when the pinata finally got opened. All the children jumped on the candy, she got pushed back & then just stood there. I finally reached down & grabbed the pinata to shake out some stuff for her. She doesn't even eat candy, but I want her to participate as much as she can. She was excited to pick up some stuff. She is also not greedy when it comes to stuff like that, only taking 3 pieces. That made me proud. All in all, not too painful. I also got a pretty nice tan out of it- BONUS!

School has started. I took her the first day. It was only a half day. She did well, even telling me she was "settled". I asked if I could go & she said "sure". I picked her up. She kept saying over & over she was a first grader. Day two she rode the bus to & from school. It seemed to go okay. She is very stimmy when she gets home & starving as well. The afternoons have been spent hearing her say "I not bossy" over & over for HOURS! She is not eating all that well at home or at school. This is normal for her until she adjusts. Haven't heard from the teacher which I do not like, but will set up a system with her next week. We will have a team meeting next week to discuss how it is going for her. The OT & PT have been quick to point out the fact she has no DAFOs on her feet. The short bus, which is now a big short bus, backs up the road every morning & afternoon. The bus owner was a little concerned about traffic letting the bus driver back up. He said he would get the police out there daily to direct traffic if need be. All I could think of is: GREAT! It's not enough we have the short bus pulling up everyday to draw attention, now we will have the police too. Thank goodness it doesn't seem to be a problem so far.

The DAFOs are being replaced for the third time. We are going back to what we had. We went yesterday to be recasted. She complained often about her feet being tired. She would even say her feet hurt, which is quite unusual for Miss HighPainThreshold. The PT wanted to have another strap added to them. We had them adjusted, redone, padding added, cut down. They kept leaving red marks on her ankles. The orothotist said no, enough is enough. She obviously still need the extra support, having to adjust them that much is not acceptable for a custom brace, put her back in what she had. The doc was called & she confirmed our decision. Sorry, PT, sometimes Mommy, Daddy & Nana know best. The orthotist is putting a rush on them, so hopefully they will be her next week.

This is getting lengthy, so I will wrap this up with one last thing. I had a comment left a few weeks ago about joining a health community. After being reviewed by the CEO of the site, I was accepted. I am know officially a member of the ASD community on there. See the new button over there on the left -------->? Pretty cool, huh? It will upload my blog posts there for people to read & send them here. On top of being a featured friend and now this, I expect my traffic to pick up even more. I am excited to connect with more people here in the blogosphere. At first, I just wanted my little blog here, in my little space, to have a place to write my thoughts. I have even told some people IRL about my blog that I wanted to keep a secret. I can't believe that people actually want to read these (crazy) thoughts!

She is almost done with therapy. Hurray for free wi-fi so I could update. Working the weekend, so don't be surprised if I am not around.

Wednesday, August 19, 2009


I know many of you are waiting for an update about the party & school. I will be back later today or tomorrow to give you one. I have been working & things have been HECTIC!

Saturday, August 15, 2009

What to do?

It is Saturday. What do thousands of children do on a Saturday afternoon? They attend a birthday party they were invited to. We were invited to my friend's daughter's first birthday party. I would have absolutely no hesitation in going if it were just my coworkers & her family. They are used to MM & understand her. However, her DH's family will be there as well as some of his friends & their families. People who don't know MM or anything about her. Strangers stress her. Stranger's children really stress her. She is already in full on ASD mode this morning. I will feel bad if I do not attend.

I just don't feel like being the poster child for autism today. I am not in the mood to answer questions, ignore the stares, work on calming her & just be stressed the whole party. It is not fun for me. I think I would be resisting the urge to give out my smart a$$ answers rather than being kind.

Some days I just can't. I think it might be one of those days. I am fighting the funk about this. I just want to climb in bed with the covers over my head & have a good cry. It makes me sad that we can't just load up & go to a birthday party. I don't know if I want to see all the NT children (neuro typical to all of my new followers) running around, care free, no problems.

Something so simple for most and not so for us.

Friday, August 14, 2009

StressFest '09-'10 (aka School Year '09-'10)

Yes, it is about to begin. She starts Monday. Today was her last day of her summer school.

I think we are ready.

School supplies have been bought. Clothing needs have been assessed. We got a call from the bus owner today. She will have the same driver as last year- we LOVED her. We went by today & met her teacher. We also saw all of her other teachers & aides from the last two years. We saw the classroom. She picked her desk. They have most of her equipment ready for her in the room. They are more prepared this year for her.

I think they are ready.

I am actually excited for school to start.

I can't believe I just typed that sentence. It seems things are starting off on the right foot for once. It is almost too perfect. ::::looking around for that other shoe to drop:::::::

Here's to First Grade!

Tuesday, August 11, 2009

Look At MEEEEE!!!

Yes, this little ol' blog of mine is getting some cool exposure. A really fun blogger, Tamara, of Mad Boastings of a Cheapskate Mom, has decided to make me one of her Featured Friends! I captioned one of her many funny pics that she posts & my quote got picked. I have blogged about her contests, this is her newest one! Her blog is not a SNK blog, although she just joined the club with her son's new diagnosis of PDD-NOS. She has a lot of humor (her stories of her weiner dogs crap me up) & some really great advice (it is not ASSvice- see the post below this) on how to save money. She has recently gotten some MEGA- exposure on her blog! She is such a talented writer. I am very honored to be a part of this.

She also made my own cool little button so it can be "grabbed"! See it up there? Cooooolsville, daddy-O. Now, I just need to figure out how to do that! LOL!

Monday, August 10, 2009

Opinions are like...

As one blogger that I love to read calls it "Ass-vice". People are always full of it, willing to dish it out, even when not elicited. I suppose most mean well or are truly trying to help. I just don't know about it.

For example, my mother's friend (who also happens to be a nurse & is well aware of MM's disabilities) came into town. This lady has been a friend of my mother's for years & I really do adore her. She is quick witted, funny & sarcastic- my kind of humor for sure. MM knows of the friend, but is not familiar with her. She spent an hour with MM & I this morning. She was in full on ASD mode, complete with vocal ticks and flapping. To some, her voice & actions appear to be naughty behavior. She was very patient with her, which is unusual for those who don't really know her. She did a great job of ignoring the stims, tried to engage her & just generally appeared at ease with the situation (we went out to a restaurant for breakfast that is very small & we were the only ones in there to help out MM). Overall, it was a nice, short visit for MM. She tolerated her well.

After dropping off MM at school, she then proceeded to deal out the assvice. This wasn't something I would normally expect from her. At first, she told me what an amazing job I was doing. Thanks. No problem with that comment. She then gave me the standard God knows who to give the special kids to, etc. Although always well intended, it doesn't really ring true to me. Next came my favorites. She looks just like any other kid, just a little weird. Okay. Is she supposed to look horrible? She will grow up to be just fine. She will surprise you by the time she is sixteen. You won't be able to pick her out of a crowd. She will have a job & everything. You will truly be amazed, don't ever doubt her or give up on her. STOP RIGHT THERE! YOU HAVE A FRIGGIN' CRYSTAL BALL? WOW! I CAN'T BELIEVE IT. I am so glad you came into town to spend this hour with my child & tell me these things. I didn't realize that all of the hard work, hours of therapy, money spent, fighting with the schools & insurance companies, pushing, pushing, pushing was doubting & giving up on her. I have never believed she could surprise me since she has proved everyone wrong since the day she was born. I was definitely giving up on her at age 6, but since you just told me all of this, I guess I will keep working with her.

I just can't believe that in a mere decade, everything will be okay. So, now I have a time line of when my stress will be gone & our happily ever after will begin.

End of sarcasm.

Sometimes, I think a book needs to be written of things NOT to say to parents of SNK & what the right things are to say. I am sure it is out there somewhere and if not, it needs to be. How about posting your best ASSvice received in regards to your child or any thing else in your life?

Wednesday, August 5, 2009

Sounds Interesting

I came across this interesting article today.

I am not really sure what I think of this. The education system early on is wanting LRE/Mainstreaming. Yet, here is a college doing the exact opposite. I will have to keep a close on eye on this cause we have about 12 years until college. Maybe less with the genius here!

Saturday, August 1, 2009

Literally Autism

Me: Did you toot?
MM: No
Me: Yes you did. Peeeuuuuuu. That is really stinky.
MM: Why thank you.

While playing the new Wi.i Re.sort Game:
MM: Let's play the skydiving game.
Daddy: Get ready to free fall. They opened the door.
MM: Pride goeth before a fall. Is that pride there?
(she has been reading Aesop's Fables)

MM: Mommy chase me so I can be TURDIFIED
Me: What is TURDIFIED?
MM: It's where you chase someone and make them frightened.