In Typical M Family Style

As you know, whenever I take time off, something happens.

We are not on our way to the buckeye state right now. MM was sent to school. Why are we not on the road? Nana is sick. Yep. Nana, who NEVER gets sick, has a bug. I don't know if it is HoNo, but she is definitely sick. Fever, achy, vomiting. Blah! I am over here nursing her right now & willing her to get better.

I reeeeeeeeeeaaaaaaaaaaaaaaaaaalllllllllllllllllllllllllllllllllllllllllly want to go see my sister & grandma. I just don't think I can handle MM alone on a road trip. I don't know how she would do. She gets easily stressed out by my pure boy nephew who bounces around with endless energy. She would be stressed from a change in scenery. She would be stressed from seeing people she hasn't seen in years. I would have no one to lean on to help when my patience are thin. My sister would try to help, but MM doesn't know her that well.

I am afraid of being alone with my child away from home.

That is such a sad statement.
Thanks for nothing Autism.

Still Here

Long time, no posts, eh? Been busy & just not feeling like typing much.

First of all, MM survived the HoNo virus. Many days of high fever, lots of vomiting, lots of refusing to drink & even more defiance with taking Tami.flu. She missed a whole week of school. I did not get it. People were freaking out cause she had it. Everyone seems to forget that she DOES have an undiagnosed autoimmune disorder. That is why her's was so bad. We did not get the wonderful clearing that comes after she has a fever. Can't say I wasn't a little disappointed in that. The important thing is that we recovered.

She has decided to participate in a sporting activity. We offered everything under the sun: soccer, cheerleading, gymnastics, etc. What does she pick? Baton twirling or as she calls it "majorettes". We found a really kind lady who teaches here in town. Guess what? She LOVES it. She goes Tuesday evenings. It has been so good for her. All I can think of is where else can you get therapy for $7/ 30 minute session. She must work on motoring planning, fine motor with her hands, gross motor with the routines, tolerating noise of music & echoes in the gym, socialization with the other girls & letting them get into her space. It works all areas for the bargain price of $7! Can't beat it! I have a video, although it is grainy. Any one wanting to see it? Let me know & I will post it.

IEP. It went well. Yes, you read that right. IT WENT WELL. I thought there was going to be nashing of teeth, pulling of hair & tears. Nope. Not at all. The regular ed teacher did not understand her IEP. She does now. The OT & SL/T were spot on in helping to get her what she needs. She now has her very own special modified & adapted desk. She has a label maker, a computer, a new program for typing & will be getting her assignments changed to the computer. They are finally recognizing she has dyspraxia in regards to writing. It's not that she doesn't know, she just can't get her hands to do what her brain wants. Setting these things in place has made it much easier to send her to school. She was not wanting to go & melting down about it. Now, not any more problems. We addressed the bus issues & they are working on the lunch room problems. I really feel the therapists that have worked with MM really have a good grasp on things. They know us now & know we pull no punches, are not lazy & really care about her well being. They complimented us over & over on how well she is doing & how hard we worked with her over the summer. Nice. BUT, does not make up for them not giving her ESY! The principal is not my favorite person. She tries to stonewall so much & I know it is based on money. She kept telling us that they do not make the things we are asking for. She is full of bull & I called her on it. I know they do cause I have friends whose children one county over have it! DUH! Also, we researched after finding it out! I think I might ask for HER boss to sit in on the next meeting. They are also going to be doing her re-evals cause it has been over 3 years since she entered the public school system. Times flies when you are having fun-NOT! We will see what their results net.

Work has been hell with all the flu. I am exhausted when I get home. It is only going to get worse as the season goes. I will survive. BUT I am off for the next two weeks! Woohoo! I am taking MM on a little road trip the old homestead to visit family & friends. I hope she does okay. We are then having a Halloween party too. I dont know why I take on so much sometimes, but hey- you only live once!

Thanks for checking in on us. Cheapskate mom, I need my code for my button still! LOL She makes some really cute buttons for people to grab for your blog! It is a bargain too! Check out the link! Later!

HO-NO!

That is what I am calling this thing known as H-one N-one. Well, I was joking & laughing about it. It's not so funny any more. Thanks to a certain auto immune disorder, we have one sick little girl here. We are at home, but might need to go in for IV fluids. She is a raging high fever, vomiting, coughing, runny nose, lethargic mess. We went to the doc today & they are almost positive it is HoNo! She definitely has type A flu, which odds are is HoNo. She was placed on Tamiflu, tylenol suppositories. They can't even give her any zofran cause she can't keep it down. Phenergan is out of the realm after this happened last time. We watch, medicate & wait. They are worried she will get pneumonia. I hope not.

I am on meds too in hopes I don't get it. That would be a dangerous mix with my asthma.

And along the lines of HO NO, we have an IEP Wednesday morning. There are so many crappy things going on with school. I do not have time to go into it now. Just wanted to let you all know we are alive.

Literally Autism

MM: Mommy, I done. Mommy, wipe my butt now.
Me: Whoa, MM, that is a big turd.
MM: Why thank you (said in her most polite sweet voice as if being told she is pretty or something we have taught her to respond to)


MM: Pop-pop went to NAPA on Cherry St.
Me: No, he didn't. It wasn't on Cherry St. He ended up going to the one on Middlebrook
MM: He took Exit 386A Middlebrook Pike
(She told me this AFTER my dad called for directions & I wasn't sure if there even was an exit for that road)
Who needs a Tom.Tom when you got a MegMeg?



MM: Smell Katrina's feet. (katrina is her baby doll)
Me: ::::::smelling doll's feet:::::::: Peeeeeeeeeeeuuuuuuuuuuuuuuuu
MM: She has a fungus among us. It's a dermatophyte. She needs lamasil A T.
This game was repeated about 5 million times this week.

PTSD

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.

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

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.