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.

Those Dreaded 3 Letters

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

I.

E.

P.


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....

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.

Blog Roll & Hop

Thanks to blogging, I have "met" some pretty incredible parents with some super awesome kiddos. I have also "met" some pretty incredible people.

I am in the process of sprucing up the ol' short bus here (since it is back to school time and all) and I have noticed lots of things that need fixed. I changed the background cause my other one was no longer good. I am not loving this new background. I need to figure out how to make my own. My pics & links that scroll are not all showing up. I need to redo those.


Now, my poor bloggy roll! So many of the blogs I have on there haven't posted in 8 months or more! I have several new bloggy buddies who I check out & would LOVE to add to my list. If you are one of them, please give me a shout out in the comments. I will add them. This also gives me a better way of keeping up and ability to drop by to show some bloggy love! I think I might divide up my bloggy roll into different categories. I have so many that are fellow parenting bloggers & not just all SN. What do you think?

Are any of you experienced at redesigning blogs? Do I need to get someone to do it for me? I am not super fancy, nor am I super popular. I do want it to look nice & improve it. THANKS!

And in the spirit of the sprucing up, I am trying a few new things to maybe get my blog moving even more. I joined this thing called a Blog Hop. I have never heard of this until I saw it on one of the blogs I frequent.

So, now I am a member of Autism Blog Hop.

Shaky Start, but Ooooo I Feel Lucky Today!!!

Well, per usual, our local school district (lsd--- just like a bad drug LOL) did not fail to disappoint.


Right out of the gate, no bus. The lsd got lucky cause the first day of school, I had to work. They dealt with the hubs. They tried to tell him "if it makes you feel any better, the sped** buses didn't come for about 12 of the kids here". Ummmm, NO!!!! That means that the parents who have enough to worry about sending their children with handicaps off to school had no busing! Sheesh.... so NOT okay. The hubs called & left a message with transportation. The next day, still no bus. They had to deal with me. Ut-oh!!! Mrs.I-know-our-rights-and-am-not-afraid-to-quote-them-or-go-over-your-head-and-won't-take-no-as-an-acceptable-answer-when-it's-on-the-IEP.


Yep, the b!tch is back.


Upon dropping her off at school, I met with the vice principal. She said it was a district thing, not at the school level. I went home and called the person in charge of transportation for special education. I called & called & called. I kept getting VM! Frustrating! I am going to make this long story short, for I spent hours chasing this down. I chewed out the lady who is in charge (but claims she is not), then talked to her supervisor and continued on up the chain. Upon all the calls & investigating, I found out the bus owner did ask why MM wasn't on the list! They claimed they had no paper work. WHATEV!!! The lady in charge was quite rude (hence the butt chewing from me. If you are rude to me, I push back---- HARD! If she hadn't been rude, I might have been content to wait it out for the week. I would have asked for transportation reimbursement, but I could have waited it out) and tried to claim it was a fluke. Not believing that for: 1.) She has been riding special transportation to this school for 3 years, this makes year 4. 2.) The bus owner asked why she wasn't on the list. 3.) This happened with kindergarten!!!! It was a large amount of finger pointing & blame shifting, just like our good bureaucratic system does at its finest.

Needless to say, the bus showed up on day three. Hee hee.... LSD 0 MM 1


As I have mentioned before, MM often has troubles with lunch at school. She doesn't always eat. She also doesn't drink sometimes. Not drinking is very bad as we all know, special needs or not. It is not good for a person to go 8 hours without drinking! We have it written on her IEP that she can drink when she wants. She is very prone to UTIs due to her CP issues & the autoimmune stuff. We are approaching the end of week two. I have been diligently documenting what she does or does not eat or drink from her lunch (long story on this cause the principal claims that they make sure all the children eat and drink when at school~ all except MY child). She has not been drinking ANYTHING from her lunch box. I have asked if she is drinking something else. I never get a clear answer, but I am guessing not because she is parched when she gets home & drinks like a fish. She came out of PT today & they asked if she was getting a UTI cause she kept holding herself. I didn't tell them about her not drinking, they know her & pick up on her cues quite well. After talking to my mom (who got her off the bus), she said she went to the bathroom 5 times in the 30minutes of being home from school. UGH!!! SO, after today, I will have almost two weeks of documentation to back up my concerns. I will meet with the teacher, the school nurse & the principal to get this resolved. WHY oh WHY does common sense elude these people????

MM does appear to be enjoying school so far. The work is quite easy for her so far. They do have her Neo & she is using it. The teacher has sent me quite a few notes as well as some emails. She says she loves having MM cause she is super smart & sweet! She is also behaving quite well.

I have had a week of ups & downs. One of the coolest ups, hence the lucky today, is that I actually won a really cool prize on Ellen's blog! I am super excited to get it! This was the first time I have one a major award and can't wait to receive my fragile package! (lol...Christmas Story reference). Go show Ellen, Sabrina & Super Purple Max some bloggy love! THANKS ELLEN! You are an amazing writer with some great kiddos & some cool give aways!

**"professional" people referring to it as SPED when talking to a parent is a whole other issue!!! I find it to be derogatory & will bring this up to the principal as well ! ARgh!

Back to School

Every where we look, we are inundated with back to school stuff. Advertisements on TV. Advertisements in the paper & online. Displays as soon as you enter the store.

Most parents are excited about the words back to school. The children have been fighting all summer. The children are bored. The parents are ready to send them off so they can relax, get their house back in order and do all the things that are hard to do with children around.

Not me.

MM starts school on Tuesday. I have a huge knot in my stomach. It is keeping me up at night with anxiety. Will this year be better? Will I have to fight as much? Will they follow the IEP? Will she eat while at school? Will she use the bathroom so she doesn't get sick? Will her meltdowns be as bad as they usually are when she starts back to school? Will she make any gains after doing so well this summer? Will the bus driver work out? Will she be able to keep up with her peers? Is this the year the kids start making fun of her or are mean to her?

Don't get me wrong, I am looking forward to getting a break. It will be nice to have most of my days off to do the things I need to without her in tow. She has also had a great summer (up until the last few weeks which I am sure is HER anxiety about the change coming up) and I have enjoyed working with her, helping her make some real gains.

BUT, I am not looking forward to all the BS of school that goes along with having a SNK.

To end on a good note, we met her teacher the other day. I am excited cause I think we might have a great fit. She has been a teacher for a long time and has spent the majority of her time in special education. She has taught a typical classroom for the last 4 years, with a Sp. Ed. child in the room each year. XXXXfingers crossedXXXX that this is MM's year!

Cheer Up...

In the last year, my biological father has gotten in contact with me.

He was MIA for over 20 years. He then got in contact with my older sister. She clearly remembers him, she was three when my mother & he split up. They were already separated when I was born, got back together & then went their own way. I met him back then, about 15 years ago. It was very awkward for me. I already have a dad and this person appeared for a weekend & expected to be as such. I never spoke with him again after that. My sister has maintained contact with him and developed a relationship. The relationship between my sister & I is often tenuous. We didn't talk for a long time as adults. We have reconciled & I try my best with her. However, I feel she compartmentalized her relationship with our biological father from me.

When MM was born, she and I were not talking. (That is a whole other story to be hashed out some other time) MM was a secret from the biological father for a long time. I didn't have any relationship with him. I also didn't feel it was important. When my nephew was born, I guess he assumed it was his first grandchild. Things were fine by me. My sister continued to feel a need to keep her a secret. I could care less either way.

Then along came F.ace.B.ook.

Being friends with my sister, she friended his two daughters (yes, I know they are my half sisters, but I need baby steps with this...) & his current wife. They could see posts & pics (I wasn't savy on how to make things private like I am now). She asked if I cared if they friended me. I didn't mind. My biological father also friended me. Fine. He then found out about MM, that she existed, his FIRST grandchild. Still fine.

I have tried my best to foster a relationship with him. I don't really think it is a familial one, but it is semi cordial. I feel like the more people in MM's life that know her & love her, the better off she will be. He has sent her two packages, I sent a few pics. I occasionally chat online with him & sent a few texts. I have put forth the effort and feel I have done all I can. The ball is in his court if he wants more, but I am not reaching out any more. He was the one who pursued me. I don't feel like I have a void in my life.

All this history leads up to the following:

My sister told him about MM's disabilities when he first found out about her. Things have been said or done that really rub me the wrong way. I know people mean well, but the best of intentions...

I posted about having a bad day yesterday & feeling bad. He texted me to ask how I was doing (btw, I have not heard from him in over a month). I just said I was tired & life was kicking my butt right now (have had several trying ASD days in a row). He txtd back "cheer up, I have days and weeks like that".

OOOOkkkkkkkkkkkkaaaaaaaaaaaaaaaayyyyyyyyy.

That just pi$$ed me off to the hilt. YOU do NOT have days like this or weeks. YOU had four healthy daughters, two of whom you ignored for years. YOU don't know what it's like to be exhausted from ticks, meltdowns, the constant needs of self help, having a 7 year old functioning like a 3.5 year old,worrying about paying medical bills, going to therapy, making sure you are doing enough for her, fretting about IEPs, fighting the school, the constant stares in public, the mental & emotional beat down etc, etc. YOU don't know how hard it is to walk around with your heartbroken cause you can't fix or stop what is going on. It will not change. It will not go away. You have never seen her, spent 1 minute with her, let alone a day.

So, sorry if I don't cheer up immediately. I think I am entitled to a pity party every now & then. They don't come as often as they used to, but they do come, especially on super trying days like the last few have been. If you really knew about our life & really wanted to be involved in a true grandparent role, then you would know. I am sure you meant well, but no.

No.

NO.

You do NOT have days like this. You NEVER will.