The Invisible Girl & Ignorance

We want on a mini-excursion last week to make it feel like we went on a vacation (more on that later). We went to a place called Nascar Speedpark. It has many different types of go-karts and rides for kids. MM was standing in line, the only one at first, and another little girl walked up. She attempted to talk to MM who doesn't speak with children she doesn't know, she usually just flaps. I don't know why, but the little girl then just pushed past MM, cutting in front of her in line. I told the little girl that MM was there first and get behind her in line. This has happened more than once. I was so pi$$ed (and my heart was hurting) about it that I went over and was telling my mom how sick I am of other children treating her like she is invisible just cause she doesn't respond in a typical manner. I was going on about it and guess what? There was the little girl's mother right behind my mom. I hope she heard every word and will teach her child compassion and awareness- I get so sick of being a public service announcement for people's ignorant a$$es! I doubt it though. If nothing else, how about some basic manners about waiting in line and taking turns?!?!


Disabled does not equal invisible!


And while I am on a rant about ignorance, don't get me started about that jerk talk radio guy Mi.chael. Sa.vage (I am splitting it so I don't get trolls who love him on this blog). In case you haven't heard his dumb butt comment here it is:


Now you want me to tell you my opinion on autism since I’m not talking about autism …Now, the illness du jour is autism. You know what autism is? I'll tell you what autism is. In 99 percent of the cases, it's a brat who hasn't been told to cut the act out. That's what autism is... a fraud, a racket.

What do you mean they scream and they’re silent? They don’t have a father around to tell them don’t act like a moron, you’ll get nowhere in life. Stop acting like a putz. Straighten up! Act like a man! Don’t sit there crying and screaming, idiot.

Autism -- everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, "Don't behave like a fool." Stop with the sensitivity training.

**these may not be in correct order, but are pieces of the statements he made**

Normally, I don't care about things that are said like this. After all, this is America and we are entitled to freedom of speech. The problem I have with this is he does not represent himself as some comedic shock jock like Ste.rn or Ma.nc.ow. If they had said this, although in poor taste, it would not have really mattered. They are attempting to be funny. This guy is one of the leading conservative voices of America, right up there with Lim.bau.gh and Ha.nni.ty. He is spreading his ignorance to a large portion of America who values his opinion. He claims to be a very learned man. It is just cruel and thoughtless to make statements like this. I think that the statement issued by Autismspeaks sums it up best:

One important goal of increasing awareness about autism is to foster a greater level of acceptance and understanding of the very real and significant challenges it poses to individuals with the disorder and their families. The good news is that we see more and more expressions of this compassion every day and everywhere, from classrooms and playgrounds to ballparks and supermarkets. Unfortunately, there are those who are apparently incapable of feeling compassion. They deserve our pity, not our scorn.


I agree with the statement except for those deserving our pity- WHATEVER! I have no time to "Pity the Fool" as Mr. T says! I say all of us with ASD kiddos load them up and drop them off at his house for just a few hours- I bet he would change his opinion really fast. I also did not realize he was an expert in ASD. Wonder how long it takes to get an appointment with him?

All I can do now is give a big internet wave at this guy with one finger, letting him know he is number one. Tweet Tweet- do you see my bird?

Does Anyone Know...

Why my bloglist takes forever to update? Does it only update when I create a new post? Hmmm...

Too Cute

MM had to get her legs casted for her new DAFOs today. She did super well. The gentleman who does them told her "Wow MM, you did so good. You are perfect!".

Her reply:

"I not perfect..... I just great"

We all had a good laugh, then tears filled my eyes. They were happy tears cause in my head I was telling her:

Oh sweetie, you ARE perfect & you ARE great.



And this is one of the good moments in autism....

Enjoy (NOT!!!) this Treasure I Overheard

Was charting at the computer at work the other day. One of the residents was talking about how she had abrupted her placenta & when her daughter was born her apgar was 1 and her blood gas ph was 6.9 (that is really bad btw). She then perked up and was a apgar 9 at five minutes. She was saying how lucky she is & at 4 months the baby is meeting all of her milestones, etc. She then said "I am so thankful, I didn't want to have to become one of those mothers". WTF does that mean?

I just sat there, trying to finish my charting through my tears. It has been such a rough week I couldn't respond like I normally would.

Some people just don't get it, do they?


Edited to add that this resident has no idea about my life @ home. It is just interesting to hear how people really feel when you are a fly on the wall.

Sufferin' through Autism Sux Week

UGH! The headline says it all. She has been in her zone, on her planet for the last week. When she does come into our world, she has been really aggressive. It often comes in the form of kicking me. I have some lovely bruises to show for it. I have always felt blessed cause she wasn't one to hit, bite, etc.- well, I can hear the gods laughing at me. I can't begin to tell you how many times I have cried this week. I know that it is just a rough patch, but whenever we go through these times, I get scared. I am afraid of losing her into her world. I have read many stories of girls with ASD who talked until age 5 or 6 and then became non-verbal. We have worked so long and hard to get her into our world and it just seems sometimes she has to retreat. I am thankful that she comes back, but fearful that one of these times she won't.

Most days, I think her ASD isn't that bad. I guess cause I see her at her worst & at her best. As she ages, it is becoming more & more evident how different she is. My nephew is here for the summer. He is 8. He keeps asking "why won't MM talk to me?", "why won't MM look at me?", "why does MM ignore me?" and most heartbreaking- "I don't think MM likes me cause she won't play with me". How do you explain autism to an 8 year old? I am on the hunt for a book that puts it in simple terms and will sit down and talk at length with him. I try not to answer him in front of MM cause I don't want her to know she is any different. I just don't know what the right thing to do is. It just makes me sad that even children are starting to notice how "odd" she really is.

Part of the reason for her being so "off" is she is off schedule. Even though she goes to ESY and a mom's day out, it just isn't enough. She needs long school day with lots of intervention. I try to do as much as I can, but I can't do it all- her hours of intervention, work, keep up with house, groceries, laundry, etc... I have never had a super hero outfit & guess I never will. ***sigh***

The other part of the reason is somehow all of the specialist appointments have come due this month. She hates to have her routine interrupted, let alone it being for the doctor! YIKES!!!

Eye dr went well- eyes better than in April, keep up the glasses, no patching at the moment, see you next April- WOW 9 months!!! Can't believe it. Of course return if any changes.

Saw the physiatrist today- not so good. She can either be really positive or super negative. Today was negative nelly day. It didn't help that MM was in full on tick mode. She made the same noise almost the whole appt along with the shoulder shrugs & hand flapping. Her fine motor skills are still so lacking, her balance was very poor today, her tone is worse in her hips, etc, etc, etc. Sometimes you just get to a point where you tune it out. There were some bright spots: She needs new DAFOs cause she has outgrown hers. This is the first time EVER she hasn't made it a year on them- most kiddos make it 6 months. She has gained & grown like a weed over the last few months. She also definitely called her gifted and said I need to fight the school for a 504 for her now. She said she falls into the rare category of disabled but gifted! All this while she was so out of sync today! That really made my day.

We are supposed to see the immunologist, but I think I am going to reschedule. We also have our 5 year exam with regular pediatrician and am not looking forward to the vaccine fight. I hope it isn't that big of a deal, but am ready either way.

Vacation is on the horizon! It starts a week from Sunday, the week of the 13th! Won't be going anywhere, just some day trips to Pigeon Forge. She just can't handle going any where right now I do just want to try to do some "normal" family things though like the water park. We will see...

Lump in My Throat & Hole in My Heart

Once again, someone we know had a baby. It is one of DH's co-worker's wife. They are both young, her much younger. She is so much younger than us that she is not even legal age to have a drink. She is like a high school girl. She kept talking about how many times she had changed her outfit for the day (3 to be exact). She would not suction the baby's nose nor change the diaper- that is HIS job to do that. It appears she thinks having a baby is like having a doll. Did I mention that they got pregnant on their honeymoon, so they haven't even been married a year yet? She also had a steady stream of visitors in and the baby got to stay in the room with her. It was nice to hold the baby. I held her so the new mom could eat. I held their baby, who was just a little over a day old, longer than I ever held MM the whole first week of her life. They were so happy and I marveled at how "normal" it all was and the sweet innocence they had in regards to having a baby. The whole time we were there, I had a lump building in my throat. I was very happy for them, but just wanted to get out of there cause I felt like I couldn't swallow or breath.


When we left there, DH asked me if that made me want to have another baby. I couldn't hold back any longer and the tears started to flow. I answered him yes, I would love another baby, but NO, that does not make me want to HAVE another baby. The odds are so high that we would go through what we went through before. I just can't do that. Another preemie, another world of uncertainty, another strain on my poor health, another possible autism diagnosis. No.





It just hurts so bad.





Watching them, it was so easy for them. I feel like I am missing something major. I have a huge hole in my heart that causes the lump to swell. Even though I know it is impractical and almost improbable for us to have another child, I feel cheated. I missed out on and will never experience all the normal things of having a baby. I won't know how it feels to just "decide" to try for a baby and have a healthy nine months. I won't know how it is to feel like you are ready to "pop" cause your belly is so big. I won't know how it feels to finish packing your bag and finish up all the little things before the baby comes. I won't know how it feels to have your baby in the room with you all night. I won't know how it feels to have everyone visit you while you and your husband proudly show off your newborn and pass the baby from visitor to visitor. I won't know how it feels to leave the hospital the same day as your baby- the whole family going home. I will never have the innocence of having a baby and everything being just great.


Instead I have memories of: taking medicine to stay pregnant, hyperemesis, being told to go straight from the doctor's office to the hospital and not having my bag packed, not seeing my baby for over 12 hours, finally getting to see her and holding her for a brief minute while hooked up to tubes & wires, a few people coming to peek at her in the window in the NICU, hardly anyone coming cause I was so sick and not allowed up for long periods of time, going home without my baby and leaving her in that plastic box for others to care for her.


It has been over five years and I am still not over it. I guess it is like some sort of PTSD and grieving process combined. I just didn't think it would hit me so hard this far out. Some days I am at peace and other days I hear "Pity party, table of one- Pity part, table of one". When will it ever stop hurting?

Heard THAT Before

MM had her usual Thursday OT & PT sessions. They both came out to tell me that she was really social today but very uncoordinated. She just seemed out of sorts. However, after days of being so off behaviorly & socially at home, she was ON. Guess she can't be coordinated & social on the same day.

The PT also said she's not sure if she will ever be able to ride her trike without close supervision let alone a real bike. She needs constant help to steer. She can pedal OR she can steer, but she can not do BOTH. She said her motor planning skills are so poor. I told her "We were also told she would never walk unassisted and she does. She couldn't jump when we started here over a year ago & now she is jumping. That is why I pay you, figure it out".

So, today was a good day. I did not get discouraged by her words, just disgusted. I get tired of hearing so many negatives. Don't get me wrong, the therapists there are really good & come out with positives all the time. It's just you get tired of hearing the same old things when it comes to your child.


WON'T

CAN'T

NEVER

BLAH BLAH BLAH words I have heard before. Prove them wrong MM- how many times does Mommy tell you "You are an AmeriCAN not an AmeriCAN'T".