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.

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.

Where are you?

I miss the old me.

How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.

I haven't been me since May 2000. Almost a decade since I lost myself. Time flies. I realize we all grow & change. This isn't just that.

After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.

A couple years later, we started trying to have a baby. It was hard and we lost a pregnancy. I fell apart. Trying to conceive took a toll on us, as it does everyone. Again, I changed. That brought on my first bout with anxiety/depression. I fought through it, with a little bit of meds. It made me angry, sad, jealous. I found out I wasn't good at everything I tried. I found out I can fail. I found out I do have a jealous bone or two in my body. Things that aren't all bad, but certainly different feelings for me. And I packed on weight.

I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.


We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.

Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.

So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.

Enough Already, 2010!-- UPDATE

We are having one bang up of a year so far.

I told you of my illness hat landed me in the hospital for several days. While I was there, my FIL had to have some stents put in his carotid artery cause he suffered a stroke Christmas eve. My BIL needs another surgery on his legs after having a heart bypass & bypasses for both his legs last year. My sister had a seizure out of no where a few weeks ago. The EEG showed seizure activity, so she is being place on meds & needs a 48 hour EEG. This whole school things is out of control. All of MMs appointments are getting to come around again. I have been avoiding scheduling some of them just so I dont have to deal. I have had horrible insmonia & crazy emotions from the steroids. DH & I are going through another rocky patch, not seeing eye to eye on the school stuff, money, etc.

Now, my mom just called me. My dad is in the ER with chest pains & EKG changes. Possible heart attack.

I am so spent. I am really losing my faith here. I know that God doesn't cause this, but how much more can I handle? Could really use some prayers/vibes or whatever you do. Where is the give me a break line? I REALLY need it.


***He will be having a heart cath tomorrow to see what is going on. Thanks for the prayers!***

And Runnin', Runnin'

My mind, that is.

INSOMNI.A

I have it bad. Some of it is s.teriod induced (I was on high doses to help with my asthma), but I am weaning off of those. Most of it is stress induced.

All of this school stuff is crazy. I can't turn my brain off, no matter what. I have tried EVERYTHING except am.bi.en. I don't feel that bad, but how long can I keep going on less than 4 hours of sleep? I am a go to bed at 9 get up at 5 kind of girl. I worry that I will run myself down and get sick again. I can't afford that- physically, mentally, financially or time-wise!

The meeting with the attor.ney went very well. I don't think it will be a matter of getting lots of money like most people think when someone needs to get involved in litigation. It is a matter of forcing their hand and getting them to do what is appropriate for MM. For my initial consultation, we talked for 2 1/2 hours. He is going to review all the info, reports, IEPS, etc and then give me some legal advice.

I really liked this gentleman. He doesn't appear to be the "shark" that people talk about. He was very calming, very methodical, but OH SO knowledgeable. He is the guru for special education law around here. I am very pleased. He realizes I don't have a lot of money (it is tied up in MM's therapy & medical stuff) or time to fight a huge law suit. IF I have to, I will. In talking to him, I feel validated. I do not want to go into any more details than that on here, since blogs are public.

The reason why I feel validated? Per usual, DH. I don't understand why we can't seem to get on the same page here when it comes to the education stuff. I think I value education more than he does, since it was a priority in my family growing up and not so much in his. He thinks I am crazy & over reacting. He feels that they (the school) are trying to do the right thing, but they don't know how. WTH? He hasn't done any reading or research about the laws, rights of special ed children, etc. I HAVE. TONS! If he would, he would realize what is going on here. If it is lack of know how, then they better learn or get someone in there who does. It is the LAW. I don't believe they are even doing what is necessary and appropriate, THE LAW, not just the right thing. There are so many things that are wrong and it keeps getting worse, that it can't keep happening. She needs to be able to function and learn how to independently. They need to give her the tools so she can do this. They want to get by with as little as possible. I don't know if it is just laziness, lack of money, lack of knowledge, etc. I DO know that by doing what I am doing, we will get to the heart of it.

We are fortunate. I am college educated. I am organized. I know how to do research. I have a large number of resources to utilize. I am a great advocate for my child. I am not the first mother to go in there without the support of her husband. (This was all stuff the attorney told me; nice to hear from a stranger) What about the parents who only have a third grade level of reading? They will just blindly do what the school tells them. That is WRONG! I can't let this happen to MM or another child. I know that it will, but even if I can make one tiny bit of difference, then this is worth it.

It is part of his denial thing, I guess. It just pi$$es me off to no end. We fight, we don't talk, etc. I am tired of fighting him about everything. He was also angry that I am spending more money. TOO BAD! This is about MM! I want her to be the best she can be. He is a very good father to her. I know he loves her. He takes wonderful care of her. He tries hard. He is still learning himself and just waking up to the fact that this is life long. He is in his own grieving process. I just don't think he is a good partner to me.

In all fairness, I am not a good partner to him. We have lost our ability to communicate with one another. I can easily see why the divorce rate is so high. I am very passionate. I react emotionally at first (not in public, at home, I rant and rave, cry, etc), but then am very methodical about doing things. By reacting emotionally, I AM HUMAN! This is my child! My only child who happens to have some disabilities. My only child who I have to guide and teach her the world, in spite of her wanting to be in her own world. He thinks I am just plain crazy. He doesn't believe in depression or anxiety (even though he had some terrible bouts with anxiety not so long ago, I would have thought he would be more sympathetic). He thinks it is BS and that I just need to relax and it will be okay. If it were that simple.... He won't go back to counseling because he said he first suggested it a while ago (he went one session when I was having problems) and so he doesn't want to go now. I think that is childish. I wanted to first, you didn't, so now no way. I realize that was my mistake, but come on!

I need to step back myself and take a look. I am doing a large amount of self introspection on top of every thing else. I want my marriage to work.

It takes two though.


This is only 1/1,000,000 of all that is going on in my brain. And I wonder why I can't sleep?

The Gory Details

First, thanks for the heads up comment about the needing to disagree. I have at least 10 days to sign off or do the disagree. Advice is ALWAYS welcome & much appreciated!

Please realize that as I type this, I am putting my thoughts out here which really has a large amount of sarcasm thrown in.

First, I had the scrambling when I said I would be recording the meeting. They had to run to find a tape recorder. That sort of set the tone for a not so happy meeting. The principal then started off with her usual "we are late, hurry up" type of statements. She is always trying to rush the meetings. It makes me very angry. She even tried to claim we would have to end the meeting cause they tape stopped. She had to get another tape! THE NERVE!

Psych started the meeting. I asked why I couldn't have had the report prior to the meeting. It is my right. She said it is our county policy to not. I told her that is the culture of the school system, NOT the federal law. ::::deer in headlights look from all::::: She then proceeded to read the report to us. I only teared up a bit, seeing once again in black & white that my child is on the spectrum. Same diagnosis- mild to moderate autism, high probability of asperger's, but just labeled ASD. (I guess since a new person did it that somewhere in the back of my crazy mind I was holding out hope it would be different. I hear all these stories of people claiming their child recovered & no longer tested for it. False hope. Thanks for nothing Jen.ny Mc.Carth.y WHY do you get to be rich, gorgeous & have your child "recovered"? I call BS. BUT I DIGRESS) Did I mention though that she has SUPERIOR intelligence in most things? Boo-yah! She is smart, she just can't always get it out! BUT, tell me something I didn't know!

We then moved on to SL/T. She too did not have the full report. Was asked why? PROCRASTINATION is their name of the game in this school. As she was going over her reports, I asked her for data points supporting this. ::::deer in headlights look from all::::: She said she had them, but not with her. WTH??? Except for the delay in reports, I believe she really is trying her best to help her & doing a good job.

OT, same thing. Went over report. I must say, OT was spot on. She gave us the report early, knows MM well & is doing wonders for her. She did a great job & I have no beef with her.

PT.... HAHAHAHAHAHA! What a joke! I already addressed that a bit. She really didn't have much to say. We didn't get a chance to ream her about the report cause she ran out to the bus to see the type of seating. Busing will not be an issue as in the past since she didn't do anything to change the report. I believe I will be asking for an independent eval.

Our Resource (which is her special ed/case manager) had no reports. I wanted to know why almost NONE of our goals were met in the IEP. She kept saying over & over how she met all of her academic goals, BUT she didn't show me any data to support that. I asked them all how they could NOT INCREASE her services when she is not meeting goals? They never really had an answer. They left the times & amount the same. The resource person made me very angry when she said she didn't have enough time/help. I said "Too bad, NOT MY PROBLEM".

I got a very major serious run around about her adaptive tech stuff. They are asking for ridiculousness. They don't want to scan her work or give her a lap top to take back & forth. They want her to do double work by transferring it to computer & stapling it. I am NOT paying for the ink on my printer to do this! I said the label maker is getting expensive for us and has no punctuation. They were like "too bad". The regular teacher even got mad & huffy about it. I have a large amount of anger about the way the were acting aggressively, adversarial & stonewalling. I tried hard to stay calm & did pretty well for the most part. Even my wonderful hubby was angry at the way they were acting.

We came up with some goals. I don't know about them. I am glad I have an appointment Friday morning with the attorney to figure out what I need to do. I do know I will be filing a complaint with the state, I will be sending a copy of the PT report with a letter & a list of concerns to her supervisor. I have on tape on the principal acted, her statements, etc. She sat on a laptop next to me during the meeting. I could see everything she was doing & NONE OF IT was related to our meeting. People got up & left the room without asking our permission. It was a mess and it is all recorded. I am standing up for MM, ourselves & for any one else that has to deal with this nonsense.

Sorry if this is scattered but I know SOOOOOOOO many of you are waiting.

Wanting/Having a Number 2

And I'm not talking about poo! (sorry, my 12 year old boy humor rearing its ugly head)


Ellen, one of my fav bloggers, has posted a very interesting question. It is so provocative that I feel like my answer needs its own post. I was reading the answers on her blog & felt like I would put the "harsh on the mellow" of the responders.

Am I scared to have a second child? I am "turdified".

My risk of pre-e is so high that I would probably have another preemie. Not just another preemie, but one more premature than MM. I feel like we were very fortunate with our NICU stay and don't really want to tempt the odds. Yes, she has CP as a long lasting reminder and they still don't know why (was it lack of nutrients in utero, was it lack of oxygen during labor, did it happen after delivery). My pre-e was quite severe. I have so many problems now with my blood pressure that I can't imagine risking my life for another little one. How is that fair to DH & MM? I know I would be on bed rest from very early on. Again, how is that fair to the tiny family I have now? I need my job, MM needs her therapy, DH needs a partner (no matter how poor of a job I have been doing), etc.

The whole autism thing plays into this as well. They still haven't found the cause or if it is truly genetic. I don't want to bring another child into the world with the potential of having ASD. What if I had a boy and he was more affected? Yes, we are very lucky with how well MM is doing and her functionality. I hate that she has to struggle & fight every day to make her way in this world.

I read of those who went on to have a second and it helped them. It all worked out and healed them of all the trauma they had from NICU, etc. When I envision having a second, I don't see all that happening for us. Is it cause my judgment is clouded by my own issues (depression)? I also read of how another has helped the older SNK. I totally can see that, but is the age gap too large now?

I am a realist and look at the odds. The odds are not in our favor. I love to gamble, but I try to be smart about it. I wouldn't bet on these odds with money, why take the risk with another life and risk our family as well? People say "adopt or get a surrogate". Surrogate would carry our DNA, so still risky. Both of those options are quite expensive too. We have spent a good sum of our savings on ABA & other therapy for MM. We just don't have thousands of dollars sitting around to adopt.

That doesn't mean that part of me doesn't say JUST DO IT! (although we can't just do it, it takes work for us to get pg & stay pg) Don't worry, just go for it. What will be will be. I have done it before, doing it now & it is working out. My heart does feel an empty place, yearning for more children. I always wanted a houseful of children. I know that wants & needs are two different things. I need to take care of the family I have and enjoy the child I have now.

And would some one please tell MM that she is not having a little sister? She keeps saying that over & over. She also told the teacher she has a baby brother named Patrick. These statements don't help me stand firm in my decision! .

So am I scared? What do you think?

Fighting the Fight

Trying to, that is. A losing battle it has become.

I haven't posted in several weeks. I make attempts to sit down & blog, but nothing comes. I have lots to blog about, but can't make my finger move over the keys to bring out the words.

What fight am I fighting, but not winning?

Yep, those three nasty enemies of mine are trying to take over again. Depression, anxiety & insomnia.

Now, most of my personal issues are job related. My work has been super hectic. We have a lot of BS coming from management as well. There is just no time or place to decompress there. We are literally being trusted to manage people's life support, yet we aren't allowed to manage our own breaks at the moment. I have worked as a professional snot sucker for more than 15 years (makes me sound old!!!). I have never been treated so child-like in my career and I find it to be degrading. I came closerthanthis to quitting the other day, but I can't. I am stuck.

I need the FMLA for MM. If I go somewhere else, I will not have that for a year. She can't afford to be out of therapy that long. I need the insurance. Although I pay out the nose, I do have pretty decent insurance. Her health (and mine) desperately need it. If we could live without the money, I would. There just isn't any way unless we live off of assistance, which I am too proud to do. However, with me feeling like my sanity is in question, I wonder if I might get declared crazy & get that check any way.

Autie has been especially trying for the last two months or so. Her legs are getting tight. She is rotating in more. I am sad cause we are at the age where they told us she "wouldn't be able to be picked out of a crowd". WRONG! We are still dealing with all of this. Her wheelchair should be in in the next few weeks. DH is adamant about not using it. I had to carry her for several city blocks the other day & messed up my back. She is too big, too heavy & too stiff for me to carry around all the time now. She refuses to ride in her pushchair (aka stroller per her), so I get stuck carrying her.

I wish I could come to the place of total acceptance and stay there. It seems that any little thing in life can push me down when I least expect it. Evals came in along with the time of year when our first lost LB should have been born and the crap at work. BOOM! One step forward, two steps back. I envy so many of you here in bloggy land who are able to post so eloquently & deal with their child's disabilities with such grace. I have none. I am a bull in a China shop that can't seem to get it under control.

I feel myself sinking back into that black hole. I don't want to go back there. It is the holidays, I have so much to do. I am forcing myself to go through the steps, but I feel void of emotion. There are some good things happening around here, it just feels hard to celebrate when you are fighting. I just don't want to be in this life right now. I want to run away. I can't, but want to desperately.

Defeated

Autism, you win this weekend. I am beat down, wore down, exhausted & brokenhearted.

I am in desperate need of a break from it all. I don't know how, when or where I can get one. Actually, ASD has been winning the past few weeks. It has gone from bad to worse. It is so sad to be praying she is getting sick & that would explain why she has been so out of sync, stimming & just "not here".

I am scared I am losing her. I know that I have said this before. She has always "come back" to her degree, but it terrifies me each & every time. I keep questioning myself: Is this it?

We also got a rough report from school on her behavior. Therapy evals are in for our private PT, OT. Very little gains made. Still stuck in the same age month we have been in forever. I am getting the feeling that this is as good as it gets. She is 6 1/2. We are still stuck around the 36 months mark motorically (just made up my own word). Am I wasting my time & money going to therapy every week?

I know so many of you would trade places with me in a heartbeat to even get here.

Just whining.

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.

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.

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.

Weekend Survival Mode

As I said before, I am really tired. It is the weekend that I am off. Lately, on the weekends I am off, I feel like I am in survival mode. I just try to get by with my sanity intact. MM being out of school is really NOT a good thing. I have tried my best, come up with (what I thought was) a pretty good schedule for her, but I have failed. She stims & melts down so much that I want to stab myself in the eye with a pen. Not really, well the stabbing eye part. This is the first time in years that she has not had an ESY. It is not working for her or us. I am so worn down with patience & my nerves are shot. I really need a break from everything- work, her, my dh, my life.

I want a vacation so bad. Sadly, I want one all by my selfish self. I hear, see & read about everyone having wonderful vacations with their families. That just doesn't happen here. MM can't hates going places. It becomes a lot of work to calm her. DH gets easily frustrated with us, I get really angry with him. (He too is hard to travel & vacation with. He doesn't like to drive long distances & doesn't like to fly- WTH???? Doesn't leave many options for us) I feel trapped here. I feel like I am a horrible mother for wanting alone time. I need to recharge my batteries. I am like a car with a dead battery that hasn't been replaced. I am constantly having to be "jumped" every time I need to do anything. Although, one of these times, I am not going to start.

This is not what I envisioned when I dreamed of having a family. I am so bummed right now.

That is all.

Warning: This Post Uses Offensive (to some) Language

Some days, I just think "Autism, you are an Asshole!". It really can drive me crazy; completely to the edge of insanity. It has been this way for the last few weeks around here.

MM has been constantly stimming. Her favorite stim is language which means we ALL get to "enjoy" the stimming. She stims when happy. She stims when upset. She stims when she gets up way, way too early. She stims when she is overly tired. She stims when nervous. These vocal stims can last for hours sometimes. Here is a mini list of her current favorite stimming statements:

"Up to your room"- this is yelled at full force, usually in bed, either when trying to go to sleep or very early in the morning. Thanks Berenstain Bears for this one.

"How do you wipe Clara's bottom? From the top to the bottom? Yes, never bottom to top. Clara's hygiene is very important"- this one is usually asked of a person about 5 gazillion times a day. Even if you answer, you will be asked this over & over & over. Thanks My Baby DS game for this one.

"What body systems are there? Skeletal, Muscular, Digestive, Circulatory & Nervous"- See above about the frequency of this one. Thanks science book for this one.

These are just a few of them. I am so tired of hearing these. I am just plain tired. She did so well for a couple of weeks. I bragged, boasted & strutted like a peacock. Now, I am just plain defeated, exhausted & sad. This really isn't going to go away. No matter how much therapy we have done, trying to redirect, ignore, etc., it is always going to be here (not just the stims, but everything about it). I don't like living with it. I can't make peace with it or even be its friend. Why?

Cause autism is an asshole.

Maybe I will feel better next week.

Going...Going... Gone!

Yes, she is back on planet MM. **sigh**

I had just made that post Thursday morning how good she was doing. We went to lunch at I.HOP. She was a little stimmy before we left, wanting her Nana. We went & picked her up for lunch. She was doing her directions over & over. She ordered her usual. She got upset cause the lady (not our usual waitress) brought her a small glass of milk. 5 minute meltdown. She then ate all of her bacon & that upset her. Another 5 minute meltdown, but got her to stop by giving her the chicken off my salad. She then was doing her driving directions the rest of the time, along with shoulder shrugs & finger flicking.

As an aside to the above part, at the I.HOP we were at, the booths have see through glass partitions. There was a couple on the other side who kept staring, rolling their eyes & making comments. My mom wouldn't let me say anything to them. I so wanted to. I was frustrated and I just hate people who stare. It is so sofa king rude! I found a cool new statement & I want to make it on a business card so I can hand them out:

Keep staring cause that will cure her Autism and then we can work on YOUR social skills.

Of course, I will add a website or some info about autism. I think a shirt for her would be cool too.

When she woke up Friday morning, she was gone. She kept saying over & over "Do I write from the top to the bottom or the bottom to the top? Top to the bottom" for over 45 minutes. I worked Friday & Saturday, so she was with Mom. She said she was hard to engage, doing lots of stims. She keeps asking to go to Dog.wood (her school). Even though I am doing my best to make a good routine for her, it is not the same. It has only been a little over a week and I feel like I made a mistake. I should have fought harder for her ESY. I know it is only a week & I need to give it time.

It is just so hard to have the clarity gone and her routine messed up all at the same time. It was fun while it lasted. Off to do the Super Family Sunday thing.

Sweetie

This morning when I came downstairs:

MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"

This was repeated about 20 times already this morning.

That is the best medicine/healing power of all.

It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.

One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.

Do I whine too much?

I don't know if I do on this blog.

I sometimes look at all the other blogs & see how much everyone writes about sunshine & rainbows. Don't get me wrong. We have sunshine & rainbows here. At times, they are just few & far between. After all this time, I guess I am still: bitter, angry, shocked, sad, depressed, etc. I have tried some counseling & of course the lovely meds. I guess it isn't enough. I still go through these long spells of dreary sadness.

Right now is one of those times. I feel overwhelmed by my life. It seems we can't get ahead no matter how much time I spend running. I hate that I feel as if I always have to clarify myself to others with statements like "I AM very thankful she is doing well, but...". She is doing amazing & beyond so many others. I feel guilty cause she isn't "disabled enough" at times amongst our disabled friends. I worry so much about the past (which I know I can't change), the here & now (am I doing enough, will it ever be good enough?) and the future (what will it be?). I can't seem to forgive myself for what has happened to my precious daughter, even though I did not solely cause it.

I mostly blog about the bad times cause this is where I "talk" it out, get it off my chest. This is where I come to stomp my feet, pout and scream about things. I guess I just am not a blogger who wants to write about how wonderful it is to live with ASD/CP all the time. It can be rewarding, it can make me feel blessed beyond all others. It also can be hardwork, tedious, heartbreaking and unfair.

I apologize if I am often a downer.
It's my blog and I'll cry if I want to.

Crud

That is how I feel like. Once again, the rotten sinuses have gotten the best of me & moved on down into my chest flaring the old asthma. Yuck.

We have our IEP on Tuesday morning to discuss the ESY & the bussing issues. I hope we can come to an easy resolution. I got some great advice from some wonderful people in addition to a letter from the doctor. Can't see how they can turn down the ESY. Her teacher said she needed summer school at the parent-teacher conference a few weeks ago. The bus is another story. Yuckier.

MM has been really out of sorts. Some of her old "ticks" are back as well as the new ones going strong. Feeling poorly, I am out of patience. I hate that, but I feel trapped by her ASD. This weekend has just been a bummer for me. The weather was nice, actually too hot when you have a cold type thing. I hate that I feel like this. I don't want to be trapped by this. I just need to figure out what is going on with her & help to quell the stims. Yuckiest.

Btw, we ran to Tar.get the afternoon. I heard something that made me so upset that tears started to well. It put things in perspective for me. A cute little girl, probably about 4 was saying "who is going to carry me & hug me now?". Her mother replied to her "just shut up. you are driving me crazy. you don't need to be loved on all the time". WHAT?!? It was all I could do to not tell her to thank her lucky stars her daughter was asking to be loved on and wanting to interact with her. She had a wonderful, healthy, neurotypical child. I wish my child would ask me for that instead of asking for directions for the 5 millionth time of the day. DH was with me, so I bit my tongue.

Yuckiest beyond yuck.

ROUGH!

We are quiet because her recovery has been very, very, very difficult. I will update when I can. She is a not drinking, not eating, not pooping, too much pain medicine needed, not talking mess. My heart is breaking for her! The autism makes this a million times harder. She cant tell you she's hurting, so she hurts herself or hit me. Please pray. Thanks.

Love-Hate

I love it when my sister comes. I hate it when my sister comes. HUH??? Yes, you read that correctly.

I love to see my sister. She is so funny. We laugh a lot when she is here. I try to have as good a time as possible. I don't get to see her very often cause she lives about 9 hours away. She is so patient & understanding, continually making the trek down here since it is hard for us to go any where.

I hate when she comes cause MM's disabilities become a giant elephant wearing a strobe light in a room that is only 200 square feet. MM does not like my nephew, the K-man. He is pure boy- rambunctious, zealous & happy. For some reason, he stresses her out. This, along with people being in the house (did I mention my sis has to stay at a hotel as well which also adds the money factor in) for visits, the change in routine, is too much for her. She spends a lot of the time crying, hiding or stimming. It saddens me so. I tried to do all the tricks for her. It doesn't really work. She is just a mess the whole time. She doesn't eat well, sleep well or function.

It breaks me down. I get stressed myself. DH gets upset which also adds to the stress level. I don't know how to help her. I realize that getting her out of her comfort zone is nothing but chaos for her. I realize that this (autism) is FOR REAL and this is not EVER going away. I also tear up as I share in the joy of my nephew and all his neurotypicalness (is that a word?). He is almost 2 years younger than MM and has surpassed her in many ways. He can run endlessly, he can write & draw pictures, he feeds himself, he gets in & out of the car on his own, etc, etc. The second he sees you, he looks at you and starts running. He jumps into your arms & gives the biggest hug that makes you feel all warm inside. He wears you down (in a good way) with his endless questions, endless pointing, endless calling of your name for attention. He WANTS to play with you, talk to you, look at you, just be there. Imagine that. He wants to play & interact with MM so bad. He tried so hard to engage her, but she was having none of it. It was so cool & so heartbreaking at the same time.

I am so used to MM with all her little quirks and how far behind she is that I "forget" what a "normal" child is like. I guess I don't really "forget", I just have never experienced "normal" from a parenting standpoint.

It makes me feel trapped. She doesn't like to go anywhere. She doesn't like anyone coming here. DH doesn't get that much time off from his work. We have no one besides my mom that could really stay with her if we wanted to go on a vacation or just to visit family. I want to scream & cry that this isn't fair. It's not like I want to go to Vegas or Jamaica. I just want to spend a few days with my family & enjoy it. It is so much work & so stressful.

She seemed to do a little better this visit than last. One can only hope that each time she will adjust & get better.