Wednesday, December 31, 2008

New Year's Eve

I obviously changed the blog. I even took down the tree last night, but the whole time I could hear my grandmother & mother in my head talking of bad luck. LOL. I was thinking then that maybe if I change this my luck will change! Whatever! I don't believe in those superstitions anyways.

Today is my sister's birthday. She is coming to visit. That is her birthday present from my mom. I am excited to see her. I am also worried how stressful it is going to be. MM gets so stressed out by my nephew. I don't know why she doesn't like him. He will be 4 in January and is really cute & funny. He has a wonderful zest for life, excited by everything. I guess he is too loud for her. Please send up a little prayer that she enjoys their visit. It is much too difficult for us to go anyhwere. It is so kind of my sister to come here AGAIN. I just want to have a nice visit.

Wishing you all much health, wealth & happiness in the new year. 2009 HAS to be better than 2008, right?

Monday, December 29, 2008


Direct your attention to the poll on the right. Thank you!

Wednesday, December 24, 2008

Merry Christmas!

Hope you all have a wonderful, stress free family holiday. It's raining, thundering & lightning here. Ah, gotta love Christmas in Dixie! I can't be happier cause I have seen enough snow to last me a life time. Those of you that are buried in the snow, I felt your pain many a time.

Check out this poem posted by a fellow mommy autism blogger.

Off to bed now, for I can't wait to see the little one's face in the morn.

Tuesday, December 23, 2008

Feeling Grinchy

It is hard to have Christmas cheer when you have to work 12 hour shifts the 2 days before & the weekend after. I only have Christmas day off. I had to run around like a fool yesterday trying to get everything done. This is the first year MM is really into the Holidays, I mean REALLY into it. She has watched the Grinch more times than I can count along with Charlie Brown & Shrek the Halls. I keep asking her if we are "Knoxes" since we live in Knoxville cause the Who's in Whoville. LOL
It is going to suck missing out on all the little things she wants to do the eve. We bought a plate for Santa's cookies, which we also made yesterday. Did you know Santa loves sparkles (sprinkles)? I have never seen a cookie with so many "sparkles" in all my life- nearly half a bottle! She will set them out with her Dad along with a glass of milk. She bought carrots yesterday, the ones with the green stuff on them. She wants to set those out for Rudolf & his friends (which she then goes on to name every time). She has the Reindeer Mix of oats & sparkles (glitter) to put out on the lawn so he sees our house. I will miss evening pajamas. I will miss pulling off the last paper link on the bell she made, counting down how many sleeps till Christmas. I will miss out on her excitement cause I will be working. She will be in bed with visions of sugar plums dancing in her head before I get home.

All of this has put me in a really foul mood. Why can't I be a SAHM? Boohoohoo

Friday, December 19, 2008

Should I or Shouldn't I?

I know I really have a lot on my plate. I also work full time on top of doing all the extras we have to do with MM. However, when I opened my email this morning, there was a message from autism speaks. They need a chapter advocate in this area to help get the ball rolling in the new congressional session for insurance. As you can tell, I am very passionate about ASD & fighting insurance has been something I have become very good at. I think that things need to be fair cause the people who are on Medicaid (actually TennCare) here get all kinds of services. I, who work & am a state employee, have to pay out the nose for EVERYTHING and get very limited services. Now, don't get me wrong, I have better insurance than most. However, things need to be fair & easier to for people to get help. I really feel a conviction in my heart to reply to this & see what happens. Can I put one more thing on my plate? Any advice here?

Monday, December 15, 2008

Monday Morning Movie & On the Mend

She is feeling better. She actually has started eating again. She has not had a fever since Friday! WoooHoooo! Now, I need to get my behind in gear to get all of this Christmas stuff done.

Thursday, December 11, 2008

Still Sick

Title says it all.

I had to take her back to the doctor on Monday. Even though she was on antibiotics, she woke up with a high fever. She had also started vomiting the night before. Ugh!!! Well, it turned out they think she has some sort of funky drug resistant strep. She was then placed on two different antibiotics. Yesterday, fever back up & diarrhea. I am debating whether to take her back this afternoon. Poor kid. With her autoimmune issues when she gets sick, she gets really sick.

Saturday, December 6, 2008


I swear, before this is said & done, I am going to choke out Ms. X (that is MM's teacher). As I posted the other day, she was sick with a UTI. We sent her to school, with a note, stating she would need more frequent bathroom breaks. My mom picked her up Thursday and she was soaked. Not just a little wet, soaked all the way down to her socks in her DAFOs. My mom immediately asked Ms. X if she knew she was wet. Of course, Ms. X was surprised stating she did not know. My mom then asked if she got her bathroom breaks. Ms. X stated she refused. I have told her and put it in writing that she still must go & sit on the toilet. She doesn't really understand potty all the time and she must be made to go. Then, here's the clincher, in her usual Ms. X style, she said she was at speech and probably did it there. She still has to go back to the classroom, get her things and be picked up. ALSO, if Ms. X did her job, she would have to zip up MM's coat. Ms. X is always so quick to blame everyone else and does not take responsibility for things. I was LIVID to say the least. This is starting to border on neglect. I could not even address it on Thursday cause I would have made a complete a$$ out of myself if I had gone to the school. I tried to call the principal Friday morn and she was not there.

I guess I am going to have to call an IEP and get these things, which to me seem to be common sense, addressed. Don't let a five year old, who is functionally around 2.5-3 years, refuse the potty. Zip up the coat. Put on the hat. Help her eat. I am going to threaten to come over during the school day and take her to the bathroom, feed her and get her drinks. My mom would do it on days that I work. It is ridiculous & neglectful. I am also about ready to file a formal complaint with the state. She goes the whole school day without eating or drinking many days. She also does not go to the bathroom at all cause she lets her refuse. NEGLECT!


Tuesday, December 2, 2008

Joining the Sick Club

Poor little MM. She got up at 5 this morning and came right into my room. Ususally she plays for a while in her room before coming out. She crawled up into bed with me. She was really wet & it smelled bad. We cuddled for a few minutes, then got her changed. She tried to lay back down with me, which is unusual for her cause she is usually hungry right away. She kept getting up & saying she had to go potty. She was also almost crying while holding herself - she never cries with her high pain threshold. After about the 20th time, DH & I got dressed and took her to the ER, assuming a UTI. She does have a bad UTI, but also a right ear infection & tonsillitis! Oooops! I thought she just had a runny nose & cough. It is so hard to tell with her ASD how sick she is. She is usually just "off". I should have known something was up yesterday when she wanted to stay with Mommy instead of going to Nana's.

Please pass the bad mommy award this way for missing the other infections.

So, she is home today with Daddy & I. I had planned to go get a lot of my Christmas shopping done this morning. No wonder I am not in the mood this year. It is always something!

Monday, December 1, 2008

"THAT Bus"

Forgot to share this little gem from MM's play on Tuesday. A grandmother, her daughter & the daughter's 3 children moved in across the street in August. There is a little girl over there that looks to be MM's age. I must admit that I have been too self-absorbed to go over & introduce myself. However, the road goes both ways. We have been out in the yard playing while they were out too. When we were at the school, DH recognized the grandmother behind us in line to get in. I turned around and said "I believe you are our neighbor. My name is Meghatron's Mom." I extended my hand & the she began to talks. Boy did she talk. She told me her name, about her daughter & the grandchildren. She had a granddaughter who is in kindergarten as well. She then went on to say she had no idea a child lived across the street until she saw "THAT BUS, you know, THAT BUS, the bus for THOSE kids".



So, I replied,

"THAT BUS is what my child rides to school and yes, she is one of THOSE KIDS. She is a kindergartener in Ms. X's class here at this school that your granddaughter goes to as well."

And I left it at that. I didn't go into why she rides THAT BUS or why she is one of THOSE KIDS. MM doesn't have to be the poster child for disabilities every day. I also didn't know if the lady was ignorant or not. I just wanted to be like every other family member there, excited to see my kindergartener in her first play, enjoying the moment.

And I did.

Here comes my Pilgrim Woman Photobucket

And a little video of her singing & doing the movements!



For some reason the video doesn't work in my blog, so CLICK HERE.

Sunday, November 30, 2008

Sleepless in K-Town

SLEEP. We have always been blessed here. MM is one of the rare ASD kids who sleeps. Well, she WAS one of the rare ones. She has been off school since Wednesday. I am used to her getting up early. She goes to be around 6:30pm, gets up between 6-6:30am. She also sometimes gets up at 5:30 when I am getting ready for work. However, everyday that she has been off, she has gotten up succeedingly earlier. Yes, today it was FOUR AM! Yes, 4AM on a Sunday! I hope this is just a fluke & that the cold she has is bothering her along with messed up routine & Mommy being "sick" all week. We bought her a light up LED clock for her room and told her she should sleep until 6:30AM. I hope this works. If not, I am going to have to start going to bed at 8pm so I can get 8 hours of sleep. YUCK. I already go to bed around 9 or 9:30pm cause I have to get up for work at 5:15. I just do not function well without decent sleep. YAWN. I am ready for bed now...

Friday, November 28, 2008

Good News, Bad News

Sorry I haven't updated yet. I have been zonked out on benadryl since Monday.

The good news first: The procedure went well. I did not have to have a stent or angioplasty. They only found a mild stenosis in the one kidney & it isn't anything to fix yet. There was nothing wrong with my aorta! The ultrasound thing was wrong! Bizarre, I know. All that worrying & stressing for nothing. Your prayers really worked! Thanks a bunch!

The bad news: I got a horrible allergic reaction from the dye they had to use. Even though they premedicated me, I am a giant rash ball. Also, sadly, we are back to square one in regards to my blood pressure. They now think it might be my central sinuses being so blocked contributing to it. I will be able to get my surgery on those soon. If that doesn't work, I will be worked up to have a type of pump placed to help regulate it. I just want off of all these meds!

We had a pretty good little Thanksgiving. My mom got called off, so she came over & made the turkey, saving DH from having to fix it. MM was very excited. She kept talking about our feast & was very excited to help make the turkey. When asked what she was thankful for she said "I'm thankful for you Nana and Mommy and Daddy".
Cue the "aaaaaaaaaaaaaawwwwwwwwwwwwwwwwwwwwwww".

She did really amazing in her little play on Tuesday, which I was very happy to get to go to. I will try to upload a little pic & video of it soon. She did really well & we all had tears in our eyes for her. My heart was ready to burst with pride & love.

Hope those of you out shopping right now got some amazing deals. I still am not allowed to drive. Blah! I should be back in commission starting Sunday & hopefully DH gets his Christmas bonus today so we can get busy shopping! I also hope you had a great Thanksgiving. I did for I felt really blessed this year with MM doing well, my wonderful family & the good news I got earlier in the week. We often take our health for granted and should be thankful for it.

Sunday, November 23, 2008

Thanks Everyone!

All the advice you guys gave was great! I **knew** I could count on all of you in cyber world to help me out. MM does not have a personal aide full time. My wonderful mom talked to the teacher for me & the problem seems to be solved for now. If it starts occurring again, I will most definitely speak to her case worker (which is not her teacher) and I will have it put on the IEP or have a meeting about it. Seems so silly to me that you have to tell someone to zip a disabled child's coat. For pete's sake, she has to have help going to the bathroom with snaps & zippers. What makes you think she can line up a coat zipper?!? DUH!

I have to be at the hospital at 0630, so just a little under 14 hours from now. I am nervous. I got a GI bug last night (or food poisoning) to boot. I am nervous cause my mom had my dad take the day off as well. My mother, God love her, is a nurse & would make her children put their guts back in & keep walking. She is actually worried for me. I was fine until I found this out (well not fine, but not as tense as now). I will update when I can. Keep storming heaven for us! Thanks =-)

Thursday, November 20, 2008

What Would You Do?

It might seem silly & small, but this is getting on my nerves. It got really cold here these past few days (of course, not as cold as you northerners cause I so remember those days), but cold enough that we need to wear winter coats & hats. She has come out of school the last 3 days with her coat unzipped & no hat on. She can not zip her own coat & sometimes needs help with her hat. I made a big deal when she got to the car, but obviously Miss X does not get it. It is necessary to protect her ears with her having issues & probably needing tubes. It is also important to keep warm. How would you approach the teacher? She already avoids me like the plague when she sees me coming. She also avoids eye contact with me as well. I am starting to wonder if she is on the spectrum herself LOL!

I forgot to add that she also has a weakened immune system from her undiagnosed autoimmune issues. This too goes along with trying to keep her healthy.

Monday, November 17, 2008

A Fever-- Hurray?!?

Weird title, huh? Poor little MM has had a stomach bug for the last two days. She finally got better this afternoon. She ran a pretty high fever with it. Whenever she runs a high fever, she gets really engaged. So, although I hate the puking & she wants to sleep a lot, she is also HERE. She speaks so clearly & not just at you. We had several good conversations this morning, even if it did involve discussing how she threw up all over my pants yesterday. I enjoy these glimpses of her when they happen. I could tell when her fever broke cause she started repeating about her new book bag this afternoon. It was kinda fun while it lasted.

I am also a little concerned about one of the times she threw up. She doesn't really know what to do when she does vomit. She just lets it fly wherever she is & you have to lean her over. I am a little worried she might have aspirated, especially since I had to fish a spaghetti noodle out of her nose! (On that gross note, I will bring this post to a close)

Thursday, November 13, 2008

It's About Control

Or lack thereof. That is what is causing all of this extra anxiety. I have absolutely no control over this situation. I am a type A for sure. I like to be organized and in control. I am a micro-manager. You would think that with a SNK, I would learn to roll with the flow easier. I have in regards to her. I wouldn't call it easier, I just tolerate it. I try my best to make sure it all goes well. I keep my palm handy at all times to organize the many appointments. She has her schedules as well. In that respect, her ASD goes well with my need for organization.

I try my best to fix everything & make sure it goes smoothly. I am a middle child, so I am a peacemaker. I mediated between the the older & the younger, while fighting my own battles as well. As an adult, I try to make life in the extended family as smooth as possible. I am not irrational like my older sibling, nor am I a huge dreamer like the younger. I am the level-headed one.

In my job, I fix people. You can't breath, I help you make it so you can. I am the one people come to for advice or when they need help. I am a take charge kind of girl. I step in, assess the situation & get done what needs to be done.

So, that is why I worry. This whole thing is out of my control. I have to rely on everyone else to "fix this" and make it so. I also worry cause this has been going on for so long & no one else HAS fixed. I hope that this will take care of everything & make me feel well. I am sick & tired of being sick & tired.

Saturday, November 8, 2008

Just put up with me...

I have a feeling I am going to be rambling alot here over the next two weeks. I just don't want to burden those IRL with my fears. So, sorry, if you come here & feel like reading you will have to put up with me.

I do really know way too much about medical stuff. I wasn't scared too much before I went to the vascular surgeon. As I said before, I am scared $hitless now. I haven't slept well since I went. My sleep is very restless, weird & wild dreams that wake me up in a sweat. I don't do well without sleep. It usually means I end up getting sick, which I do not need before this procedure. I am very afraid of having to have a major surgery. I am worried so much about my little girl. She knows I went to the doctor on Tuesday and keeps asking "you feel better now?" . She knows something is up. It is her little instinct going off.

I don't know how not to be afraid. I know I have the right, but I just don't want to worry those around me. I am the "fixer", the "strong one", the "level-headed one", the "independent one", the "reliable one". I feel like with the last thing on my plate, I can't deal. It is if I have one of those cheap paper plates that is overloaded. I am fumbling to carry it & someone puts one more serving of food on there and that is it. I can feel the plate bending, folding in & ready to spill over. No one else notices cause they are too busy eating. They all have a reliable strong plate, but I got a cheap one cause there were none left by the time I got to get something myself. I always put everyone & everything else first. Now, I have nothing left for me. I feel as if everyone is already over burdened with all that we have been through the last 8 years or so. I already feel like DH has checked out on me. He can't handle crisis at all.

I just want to fall apart, but I can't. I have to be strong cause someone in this family has to keep it together. How much more do we have to go through? I know what we go through with MM is small potatoes compared to so many others. It just seems that we keep getting kicked over & over. I want to cry cause it doesn't seem fair. If I start crying, I don't think I will stop. Two weeks of crying wouldn't do anyone any good. When do we get our happily ever after? Does anyone?

Warned you! Nothing but nonsense & prattle!

Wednesday, November 5, 2008

Time Change & My Health

UGH! MM is not dealing well with the time change. She is getting up before 5 every day & is exhausted & falling asleep before 6pm. We are trying to get her back on schedule. She came busting into my room this morning while I was trying to quietly get dressed for work. Needless to say, she scared the poop out of me!

Now for the update on my appointment. I am scared, but doing okay. I have to have an angiogram (it is like a heart cath, but they look at other vessels, not your heart)in a few weeks. They are going to check to see how big the narrowing is in my abdominal aorta & in my renal arteries. He wants to check the renal arteries since one test says I have renal artery stenosis & one says I do not. I asked if that meant just doing an angioplasty or a stent when he looks. He said he feels that with how large it appears on ultrasound (even though ultrasound tends to make it a little bigger) & the location of it, that is most likely can not be stented. He says I will probably be looking at a bypass graph on my aorta. He says it is good they found this cause most people die from it. I am keeping my fingers crossed that it can be stented. I am keeping the attitude that I have when it comes to dealing with MM's docs. They always give worse case scenario & then things often turn out a little better than that.

I don't know. I guess I know too much & am trying to be naive. I really am scared $hitless. I put up a good front for everyone else so they won't be scared. What if they can't fix it & I have to have a major surgery? What if something bad happens to me? What will happen with me being down from a major surgery for so long? How will I care for MM? Who will help take care of MM & me? Who will help take care of MM if something does happen to me? The stakes are high any way, but they are even higher with a SNK to take care of. We don't have a whole lot of support here- mostly my mom & dad then a few friends. MM will only stay with my mom or DH.

They have to get me fixed though cause we still have a lot ahead of us. We got a lot of livin' to do (as the song goes).

Just please, if you get a moment, can you pray that things will be better than they think? Maybe if we storm heaven, it will work out. Thanks everyone. I am off to bed to try to sleep. Nov 24 can't get here fast enough...

Monday, November 3, 2008

Kreativ Blogger Award

I am late in picking this up. Sorry, Christine! Go check her out & show her some love. She has a great blog that I found through another wonderful blogger.

Here are the necessary rules
1. List six things about yourself
2. Pass this award on to other bloggers

I guess they are supposed to be some juicy secrets. I don't know if I have six, nor if they are juicy, but I will try.

1. I wanted to have a houseful of children. I always said I wanted four mean-a$$ little boys.

2. When I was growing up, I was a serious tomboy. So serious in fact, that I made everyone call me "Matt" for about two years.

3. I sing constantly & make up silly songs all the time. This is okay, except I am a horrible singer!

4. I have never been real "camping" nor will I ever go because I will not be away from my blowdryer & hair products that long.

5. I once ate a whole jell.o mold (remember those tupperware jello molds your mom had as a kid?) full of orange jell.o cause my sister bet me twenty bucks I couldn't. She didn't pay cause I threw it all up. I hate orange jell.o now.

6. I scored a perfect score in english on my ACT. :::snort, pushing up glasses::: Yes, I am a nerd.

Now to decide on whose secrets I want to read!

Not Again...

Well, MM failed her hearing test at school today. They check it regularly & have her history of tubes. They did a very thorough screening. There is something going on in the middle ear of both ears. Guess that means that bad mommy, who crossed off the ENT on our lists of specialists, was wrong. We DO need to keep up with them. UGH. Have to call tomorrow to make an appointment for her.

And speaking of docs, tomorrow is MY appointment with the vascular surgeon. I am really scared, but hoping it will be something "easy" to fix- if a huge stenosis (narrowing) in your aorta can be "easy". I am choosing to live in denial of all of this at the moment. Afterall, healthcare workers make the worst patients!

One More Time Cause It's Funny...

Sunday, November 2, 2008

Best Buck I Ever Spent...

She was wanting to watch herself as soon as it was done. This has provided hours of entertainment over here for us since I have 12 year old boy humor.
I have no halloween pics to offer- I had to work :-P

Wednesday, October 29, 2008

Just a Little Taste

This is just a little taste of what I am up against here. This is the "wonderful" school system MM attends. It is also the "wonderful" school system I fight with about IEPs, bussing, etc. The comments are also some of the great perjorative attitudes we face frequently around here- some are also quite understanding. Be prepared to be angry & sick after clicking the link....

School Board Hit with $3 Million Lawsuit

Thursday, October 23, 2008

Fall Break Update

I do believe it is school stressing out my sweet girl. She has been off all week. She is doing GREAT! My sweet little girl is back. She is loving, engaging, happy. No meltdowns that are out of the ordinary for her. She keeps saying "No school today, I on fall break".

I am glad she is back, but now.... what to do about school? She needs to go, but it is so hard to deal with her behavior. Any advice would be appreciated. Thanks!

Monday, October 20, 2008

Uneventful with a Break

We went to the physiatrist last Thursday (same day as B.S. parent-teacher conference). She did okay, with only a little meltdown when she had to remove her shoes & DAFOs. I was pleased, considering we have a daily 2:30 meltdown after school. The appointment was okay as well. Slow & steady she goes, making some improvements. It looks like we are going back to water therapy part of the time & doing land PT part of the time. She also wants her back on the treadmill cause her gait doesn't look as good as it did when she was doing the treadmill training. Her "running" has diminished as well without the training. We got some new hand exercises to help get her brain some more input. We made a little improvement in our hand writing, although she certainly has a long way to go. Her DAFOs look good, no changes needed there. Overall, an uneventful appointment. Uneventful is good in my book.

MM is off this week, enjoying her fall break. I am off too, so I am glad to be home! Woohoo!

And now, for your enjoyment... a rare picture of our family!

Pyzam Family Sticker Toy


Friday, October 17, 2008

I Call B.S.!

Alright, I should have known it was a set up from the get go. MM's parent teacher conference was yesterday. It was scheduled for 6:30pm. I told DH that I bet she scheduled us for the last meeting of the day so we don't disturb the others. When DH & I got there at 6:20, the doors were already locked. We jiggled every door and stood there a minute. Someone came out, letting us in. We waited outside the teacher's room for 10 minutes, then we were let in. She immediately informed us that we only had 15 minutes to talk cause they were locking up the school & setting the school alarm. WHAT?!? I did not get in all my questions, they only had her report card & not her IEP progress report. When I asked Ms. X about the report, she claimed she knew nothing about it. Then, her phone in her office began to ring (she acted very surprised by it). She went and answered it. She then came out and said we had to leave right then. Hmmm... I smell something that I don't like. I find it hard to believe that we were the only meeting in the whole school scheduled for that time. I also find it amazing that they knew to call directly to her room. I did not have it in me to argue last night, but I will be sending an email to the principal, requesting a meeting. Isn't it amazing that fall break is next week as well.

So, like I said, I call BS!

Wednesday, October 15, 2008

Remembrance Day

October 15th

This is for all of those who have suffered a miscarriage, an ectopic pregnancy, a still birth or the loss of an infant. A day to remember, a day to grieve, a day to educate, a date to relate to those with a loss.

I know I was forever changed when I miscarried. I often think of what could have been.
I know too many others who have suffered the loss of a baby, forever changing them as well. There is no greater loss than the loss of a child.

Our little babies- always wanted, always loved, always missed.
God bless.

Get Ready to LOL

We were working on rhyming words on Sunday. Here is how the conversation went:

Me: What rhymes with hat?

MM: Cat, Sat, Bat

Me: What rhymes with red?

MM: Head, bed

Me: What rhymes with Dad?

MM: Glad, Had, RAD

Me: What rhymes with Mom?

(followed by uncontrollable giggling)

And now we know what my child thinks of me...LOL

Saturday, October 11, 2008

The Road Not Taken

I left a comment on some one's blog that got me thinking about our life.
I loved this poem when I was in high school, memorized it & have never forgotten it. However, I have never really thought of how it applied to my life as an adult until now.

The Road Not Taken
by Robert Frost

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth
Though I did not choose this road we are on, it is definitely the one less traveled. I can not see very far ahead on the road cause there are so many twists & hidden things. Issues keep coming up and yet, we keep forging ahead.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same
This road does need to be walked, even if not by my choice. It is a road where the lows are very low and the highs can reach the heavens. It is a road where so many of us know how blessed we truly are- to appreciate every little thing in life and to never take any thing for granted. Just like so many women before me, I am a mother, just a different kind of mother than what I dreamed about so many years ago.

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I would love to travel another road, but I never will. With all that has gone on, I will never get to go back to that place where the roads merge. To me, that place where the roads meet is where you are so naive with all the hopes & dreams one has when thinking of having children & the future. We will never have another pregnancy, another child, another chance to go to "Italy" for we have made our permanent address in "Holland".

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference
My life is totally different. It is so many more things than I ever imagined or dreamed. It is a road I have traveled and met so many friends on along the way. I never would have met these friends if not for this other road. It is a road where I have learned who my true friends & family are. Some of them want to help me on this road, while others have left us behind to travel alone. It is a road where there aren't too many places to stop & rest, but you are able to keep going because you keep finding new, amazing things that others miss out on. It is a road that has changed me, made me into a totally different person. Because of this road, I have learned that WE (MM, DH, myself, so many other special children & their parents) are what Christopher Robin tells Pooh Bear in Pooh's Grand Adventure: The Search for Christopher Robin:

You're braver than you believe, stronger than you seem and smarter than you think.

May God bless all of you on the road less traveled.

Friday, October 10, 2008

A Little.... okay actually Big Brag

Can I just say how smart my little girl is? They have been doing testing at school to try & figure our where her knowledge is. Of course, she can't write, so they just have her verbally give or point to answers if it is multiple choice. Can you believe that she, who JUST started kindergarten, averages for all subjects tested at a grade level of 3.8! That is nearly END OF THIRD GRADE! WHOA!!! She, who is only around a 3 1/2 years old motor wise, is smart. Not just plain smart, but super smart! We knew she was, but I didn't realize how smart she really is!

This is an absolute bright spot in my week.

Tuesday, October 7, 2008

Ugh... Behavior

Transitioning to school has been quite difficult for MM. She is doing well at school, but her behavior at home has been abhorrent. My sweet little girl with occasional meltdowns has turned into a full on melting pot. She has one everyday around 2:30 (about 1 1/2hrs after getting home). It doesn't matter where we are, what she is doing, she just melts. It can last anywhere from 30 minutes, but has been more on the upto 2 hour side. She is also crying every night at bedtime now, again lasting the same amount of time. Bed time has never been a problem for her. It is breaking my heart & I am feeling so bad for her.

I am also scared.

We have been very fortunate in being able to moderate her behavior until now. I am afraid that this will not pass & that this is how our life is going to be. I KNOW she has autism, I just have always felt blessed it was mild to moderate, being more mild most times. I am terrified of losing her to these meltdowns. She screams, cries, hurts herself. She is back to carrying a chewy tube full time cause she chewed through a watch & spot on her arm at school one day. (Of course, the teacher did not notice this. She says she is just "fine" at school.) She seems to have a lot of regression. The child who has never had an accident since being potty trained, has had 4 in that last 4 days. I also think she might have a UTI or an ear infection, so we are going to the doctor this afternoon (she still holds her pee a lot at school).

I just want my sweet girl back.

Thursday, October 2, 2008

The Vows

I went to a wedding Saturday evening. Those who know me IRL know that I am a softy at heart. I have the rule that no one cries without me & I will shed a tear or two at something super sweet or super sad. I went to the wedding with my friend & her 6 week old infant. I ended up sitting by myself since the wee one started crying almost immediately. The church was beautiful & I was sitting there doing great. I didn't even cry when the bride came in. Then came the vows:

I, (Bride/Groom), take you (Groom/Bride), to be my (wife/husband), to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; forsaking all others, from this day forward until death do us part.

Then the tears started.

Not because it was beautiful & I was happy for my friends (which is usually why I cry at weddings). I cried cause I was really thinking of those vows. How is it working out for us (DH & I)?

To have and to hold from this day forward: We have each other but there isn't much time for "holding". It has become a chore in my mind. We have to schedule the time in for each other & I am often so exhausted that it is something I quickly drop from the list.

For better or for worse: We certainly have had our fair share of worse- where is the better? We lost a baby, struggled to get pregnant, had a preemie, got the two big diagnosises. It seems the better has truly gotten lost around here for quite a while.

For richer, for poorer: I believe we fall into the poorer as of late. We have spent so much money on her therapy, doctors appointments, my medication, etc. Also, like everyone else, we struggle with the way the economy is heading.

In sickness and in health: This was what really got the water works flowing at full gush. One year after getting married, I got really sick with an infection that took over 3 months to clear. We then have had to deal with MM's sicknesses, which are really life long. Then, once again this year, I have been hit hard with infections & the uncontrolled blood pressure. (Have I mentioned that I am waiting for a vascular surgeon appt so I can get a stenosis in my aorta repaired? I know I haven't cause I am desperately trying not to think of it & the scariness of it all) We have really battled much more sickness & not enjoyed as much health.

To love and to cherish: I know that I love my DH, but do I cherish him? Do I feel the same way today as I did when I took those vows? I know that I do not feel like he cherishes me any more.

AND YET, we are still together. It has been nearly 9 1/2 years since we said those vows. We are beating the odds at the moment, since 50% of families with a preemie & 80% of families with an ASD child go through divorce.

This wedding really got me thinking that I need to step back & take a long hard look. I need to find the time & energy to somehow make my DH & our marriage a priority again. I need to go back to counseling & find me again. Maybe if I find me, I can find the ability to cherish him once more & not just love him. I know that I will NEVER be the old me, been through too much. But, maybe I can find the good pieces of the old me & merge them with the good pieces of the new me to make an even better new me. A better us.

And this is my vow.

Wednesday, September 17, 2008

A Big Loaded Question

As I sit here contemplating the meeting yesterday (I will update that later, I just do not have the energy right now & I am still trying to figure out what to do), I can't help but wonder...

Why didn't I sue the doctors (my OB/GYN & the NICU dr) for malpractice? I think that in regards to the NICU doc we had a pretty clear case of it. Maybe if I had, I would have enough money to get MM all the therapy she needs & not have to fight with the freakin' school system to get her what she needs. Maybe if I had, I could afford a private school that is more than willing to do the right thing. Maybe if I had, I could just have her get her private therapy (which does an awesome job). Maybe if I had, I could quit my job & be able to better care for her needs & not depend on those yahoos in the school system to do it. Maybe if I had, I could pay for a private aide to attend school with her. Maybe, MayBE, MAYBE...

How about you others that are affected by CP? Did you sue for malpractice or wish you had?

Monday, September 15, 2008


I am very anxious about tomorrow. Not good anxious either. I am very nervous about the IEP meeting. I worked very hard all weekend getting my "ducks in a row". I spent a total of about 12 hours doing research, gathering the info & typing up my notes. I have to go it alone tomorrow cause DH has to stay home with MM & my mom is working. I think I am ready & hope I don't fall apart & start crying. (I usually just cry when I am mad though) I just want things to go well & have them do the right things to help my little girl. I hate that everything has to be so hard when it comes to disabilities and fighting the school system is just another obstacle.

Friday, September 12, 2008

An Award

One of my favorite bloggers, Angela, has given me an award. This is the first time ever for this little blog o' mine. How sweet & cool! Check out Jack's blog & his cute little sister!

I nominate:

One of the blogs that I love to read for her eloquent way with words is written by Nelba. She always manages to touch my heart and put into words what I can not. I pray for her often as she is grieving the loss of her beautiful son & living with two more amazing little boys.

Melanie has an adorable little boy, Daniel, who is doing some amazing things. I like how she writes honestly & is exploring alternative treatments to help her little man. I love how she calls her blog "Better Than Normal" cause it is so often true that having a SNK can be more rewarding making it better than normal!

What can I say about Nancy ? Her stories of Caitlyn often keep me in stitches & I love that she can curse like a sailor (something I am known to do IRL). Caitlyn also is one of the prettiest little girls with gorgeous eyes. She is growing up so fast!

Shannon's blog of her kiddo's, Ben & Kiera, is a great read. Kiera is a real spunky little thing. Ben is often like MM in that he is not severely disabled, but doesn't fit it with the neurotypicals either. She too has started navigating the kindergarten road like us.

Last, but not least, I give my final spot to Bird (whose real name is escaping me at the moment). Seeing pics of her little man, Charlie, always makes me smile. She is another cool southern mom who is checking into alternative therapies as well. She is just learning to navigate this complicated system of being a special needs mom and I know I am going to enjoy watching all the gains Charlie keeps making.

Here are the instructions for the following Brillante Weblog Premio award recipients:

1.Place the Logo on your blog

2.Link to the person who awarded you

3.You can nominate up to 5 blogs

4.Add their links to your blog

5.Leave a message in the comment section of their blog to notify the winners.

Thursday, September 11, 2008

Questioning Public Education

School is so much fun- NOT!

On the surface, MM appears to be enjoying school. She is learning the routine & getting along. Her behavior at home is HORRIBLE! Ugh! So much stimming & melt downs. She is obviously spending all morning keeping it together & then coming home and "letting it all hang out". Needless to say, I am exhausted with her behavior.

We are having a meeting on Tuesday to bring the team together & figure out some things. I already posted many of my concerns here. I hope things get better with school & at home. I have given our private therapists a copy of her IEP so they can help me get some better goals.

I am quickly learning, in this county, that you have to have them put everything in writing on the IEP. ***sigh*** It really makes me sad how much I have to fight them. I just want them to do their job correctly & do a decent job (notice I am not even asking for good anymore). Something funny is the teacher asked ME if I knew where the keyboard was. To me, that is like me asking a patient "Mr. Johnson, do you know where I last put that ventilator you need?" I bet you heard me screaming across the whole eastern United States. I am just hoping to not go bald from pulling my hair out over this!

Monday, September 8, 2008

Have You Tried Wordle?

I plugged in a few words I often use on this blog & this is what I got...

(Click to see in full size- I can't figure out how to make it bigger- anyone know???)

Wednesday, September 3, 2008

Going to School with AUSTIN

From the title of the post, you might think AUSTIN is a child in MM’s class. Nope. It is the way MM read AUTISM the other day and I just thought it was so cute & sweet I had to share. She read it on the cover of the book Beyond Words: The Successful Inclusion of a Child with Autism. So far a good read. One of MM’s OT brought the book out for me to borrow & read. She said she thought of MM immediately when she started reading it. Now, onto the nitty gritty of school.

She has started her second full day week. From the surface, things appear to be okay. She is excited to get on the bus in the morning. She talks non-stop about her "friends" at school. She is generally happy overall. However, all of her lunch keeps coming home. I wanted to call the teacher earlier in the week last week, but (against my gut & better judgement) DH talked me into waiting. I asked the teacher at pick-up on Friday to call me. She said she would at 2:30. The call did not come until 4:55. I was anxious & ready with my list of concerns & questions. By that call coming so late before the holiday weekend, I felt as if she was trying to get out of something. I kept her on the phone until 5:40. I still feel like there are many issues that still need to be resolved.

The conversation started off with me answering the phone "Hello?"- Her "T------, this is Ms. X". **I don't know why, but this rubs me the wrong way. You call me by my first name and expect me to address you as Ms. X. To me, it makes me feel as if she is trying to have a power trip over me or put me in my place. Oh well, get over it, I thought. We made pleasant chit-chat for a minute or two and then got to the list I had.

I asked her if she knew she wasn't eating. She said no, that she would have to ask the lunchroom aides. I asked who helps her get her lunch together. She said she didn't know that she just walks her into the lunchroom, through the children and gets seated in a seat. First of all, she is not supposed to be in the lunchroom. She is supposed to get a sensory break at that time & have enough time to eat. Second, she had been told that she can't get her juiceboxes open herself or the containers her food is in. I reminded her it was on her IEP and she said they were trying it to see how she did. Again, from the surface appears okay, going all day without eating or drinking is a sign that she is not functioning.

I asked her how the potty situation was going (MM keeps crying when she gets home & has to use the potty immediately). She said that they "offer her" the chance to go 4 times a day, but she always says no. She had been told that MM can not get her pants down or pull them up by herself the very first day of school. She has to be taken to the bathroom for assistance. SO, my poor little girl was not peeing ALL DAY at school. I hydrated her to death this weekend and think we have fought off the UTI she was getting cause her pee was cloudy & she was tearful when peeing several times.

UGH! Two of my biggest fears & both of them were realized! I tried to remain calm. I think I did a good job but to say I am upset is an understatement.

I asked where her keyboard was & her adapted seating. She said she didn't know where or that she needed it. I again had to state that it was on her IEP & that it had to be there. She told me that she thinks MM could write if she just paid attention. I was like WHAT!!!???!!! Do you know how long we have worked on this & hours of therapy working on it. I told her are you forgetting she has CP as well as ASD? Her fine motor is really lagging due to that. Trust me, the kid wants to write so bad she can't stand it. She can spend hours "writing" with her label maker. Blood pressure went up another 10mmHg with that statement.

We then continued to talk about a few other things like her new SL/T & her resource stuff. She told me that the SL/T was coming up with a new plan for her. I inquired why she didn't have the same one as last year. She didn't know. I asked to at least be called so I could be involved in her plan. She didn't seem to eager for that. She also said her resource (which is her Aide) couldn't come until 12:00 during the day cause she had to "fit her in" the schedule. That did not make me happy. She is supposed to be there first thing in the morning to do the fine motor stuff. There is an intern in the room though & she is essentially MM's aide or the teacher is if the intern is leading the class. They don't know what to do with her education wise cause she already knows everything in the curriculum. They are going on to first grade stuff with her, but think she will test out of that too. It is on her IEP to figure out what curriculum to use for her & her hyperlexia. She has never had a student as smart as MM. She kept using the excuse that they are trying to get to know the kids & ease into school. That is not a good reason to violate the IEP in my book.

We were supposed to have an IEP meeting last week cause that was what was written on the IEP at the end of last school year. It wasn't done. I am going to request one in writing & remind them of the law about violating the IEP. I guess I am going to have to have the bathroom written into it as well as get the lunchroom stuff moved up. I am also going to have to have a 504 added since she is disabled but gifted. UGH! I hate that it is ALWAYS a fight, but it is worth it to get her what she needs.

To end on a sweet note: When they were doing all the testing the first two days, MM had her peer buddy go from station to station. At the last station, there was a list of 48 words. They asked her buddy if she could read any, she said no, but could she say them. It was then MM's turn. She took the list & read all 48 words after breezing through each testing station. The little girl said "Ms. X, MM is the smartest girl I know". Ms. X said it was so sincere & sweet she nearly cried.

I did.

**Initials are being used & changed to protect identity. Don't know who might stumble upon the blog & I would hate for teacher to find out that I am b!tch!ng about her**

Friday, August 15, 2008

We Survived!

After many tears at first, she made it through her first partial day of kindergarten. Update to follow soon, just wanted to say we survived partial day!

Thursday, August 7, 2008

Something to be said...

for a high pain threshold. MM had to get the rest of her immunizations for school. (we split them up so she didn't get bombarded cause one still isn't 100% with the ASD about vaccines). She did so well. She sat there like a trooper, watched them & never once cried, screamed nothing. Everyone was so amazed in the office. It was a new nurse and she ran to get the rest of the office staff and tell them how she did. Everyone brought her a sticker for doing such a great job. She was so proud of herself, kept saying "proud of you" over & over. She did just as well the last time, but it was someone who knew her before. Just had to brag a little...

The house is still in some disarray from the flooring, but hopefully all will be back to normal soon. She starts KINDERGARTEN next week. I am a little nervous to see how she will do with minimal support. Will let you know and just wanted to post why I have been so scarce. Only reason I have time now is I am at therapy waiting for her. Oh the busy lives we lead...

Sunday, July 27, 2008

Very Sad, Scary...

Don't know how many of you have heard the news about the church shooting here. That church is just minutes from here. That is the church my brother & his girlfriend attend. They changed their minds and did not go to church today- THANK GOD. The victims are at the hospital I work at. What is this world coming to? Follow the link to read the story

Saturday, July 26, 2008

Autism Lesson #3651

After having a hot water heater break and need to get floor redone, prepare child for several days. Moving everything out of kitchen, pantry & laundry room is very stressful. All stuff is not where is SHOULD be which causes outbursts, increased stimming, generalness to make it "autism sux day" - which causes stress for rest of family.

Wednesday, July 23, 2008

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 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 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...

Wednesday, July 9, 2008

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....

Thursday, July 3, 2008

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...

Friday, June 20, 2008

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?

Thursday, June 5, 2008

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.




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".

Wednesday, May 14, 2008

TKO Overturned!

We had that IEP on Tuesday, the 6th. What a nightmare! They almost bordered on the ridiculous for what they were expecting.

First, they wanted to put her in regular ed kindergarten with no support! We wanted her to have an aide to help her- not a full-time aide, but an one there for the time she needed help. We were told that NO ONE has their own aide. We were told they couldn't pay for it. Lies again! She really needs help during fine motor time like cutting, pasting, writing. She also needs help during independent work time because she can't attend without lots of cueing due to her inability to tune things out. We fought & argued. They claimed she was doing well without support during those times- A LIE! She just about has a 1 on 1 aide for those things in her preschool class. She has PRE writing skills emerging, but none really to speak of. They then said she would have consult CDC teacher (classroom for disabled children) 15 minutes a day. No where near enough support! She could have a sensory break if needed. They presented that data that she has moved from a 1-2 year old skill level to a 3-4 year old skill level, with most motor skills at a 3 year old level. They then claimed she would be at the same level as every other 5 year old entering kindergarten! UGH!

Second, they wanted to put her on a regular ed bus. The child who can not walk down steps unassisted & loses her balance so easily to go on a regular ed bus. We asked about her saftey, especially when getting off the bus and the bigger 4th & 5th graders are pushing to get off. They said the BUS DRIVER could help her off! That is against the law here. They also said that sometimes an attendant rides the bus and someone could probably help her off the bus. HELLO!!! Probably & sometimes is not good enough when it comes to safety. We had to remind them she doesn't just have ASD, she has CP as well!

Third, they totally shot down ESY saying she showed no regression. Again, her teacher lied. She has always talked of how hard it is for MM to get back in the swing of things after breaks, long weekends & even the weekend. That was their sole basis for rejecting her. They kept saying they know how this feels & how sorry they were. I went around the table asking each one if they had a child with a disability. They all said no. I then gave them the you don't know how I feel speech because they don't live our life & have never walked in our shoes. I was so angry & upset, I walked out. DH continued to argue with them, he even ended up asking the CDC teacher (who was extremely ignorant IMO) if she was stupid! It was terrible.

We refused to sign anything. They kept trying to get us to sign it, first trying to tell us we had to. I know that is not true. They then kept asking why won't you sign it, we have made such & such accomodations for her. We also wanted another meeting with the county special ed supervisor to discuss bussing, ESY & placement. I had to remind them that by waiting so long to discuss ESY left us in position that they were denying our right to due process since it takes up to 60 days to go through it. I was so angry that I finally just said "It's okay, we will just go to mediation & I will get an attorney." It was over 2 1/2 hours of stress & arguing.

After leaving the meeting, they were calling within in 30 minutes, setting up a meeting for the following Tuesday, the 13th. The supervisor was going to be there. I started researching like crazy & got a hold of the local adovocate. She really gave me great advice. I was ready with my three page rebuttal & all the laws to support the services that are necessary and appropriate to get her what she needs. I stressed all week about this next meeting, I cried so much that I think I had no more tears.

What a difference a supervisor makes!

No more lies flying around. When the meeting started, they immediately told us she would be on the special ed bus still with a 5 point harness since she hovers around the 40lbs weight. Next, they offered us ESY based on insufficient data & her need to have continuous monitoring of her social skills. They are giving her OT & PT over the summer @ the preschool as well. They also changed how kindergarten will be for her. She is going to typical ed with what is called resource here. It is essentially an aide (but she is actually a special ed teacher) for the times she needs it- fine motor times, independent work times & lunch time. We also won't have to deal with the CDC teacher at first! WOO-HOO! MM is considered mild to moderately disabled, not severely disabled. Most of the CDC children at this school fall into the severe, the rest get resource. She will get the 1 on 1 she needs at those times. She will also have a peer buddy assigned to her that will help her. They will use a child who tested high at the kindergarten testing so she has someone who is smart enough to help her. We will have an IEP one week after school starts to see how she is doing to see if she needs more support. I did not have to argue, fuss or even use my 3 page rebuttal. Hmmmm....

WHY? Why did we have to argue so much at the first meeting? Why did they tell us all those lies? Why did we have to have a second meeting? Why was it so easy to get those things once the supervisor was there? Why do they put us parents through all of this BS?

So, see they originally had us down with a Technical Knock Out, but we managed to get the decision overturned & in our favor! I am sure I have another b!tch flag added to MM's school file since we are already labeled a high profile case. I will take the flag & wave it proudly if it gets her what she needs!

Monday, May 5, 2008

Here We Go Again...

We have an IEP on Tuesday.


Double Yuck.

We are going to discuss ESY & placement for next year. I am really torn. I don't know what to do. The ESY is easy, she needs to go to get her therapies and socialize with the children. Placement is another story. I am not sure if I want to keep her in a CDC (classroom for disabled children) with some inclusion or total inclusion with an aide. I have never navigated this road and am so unsure of which way to go. I also don't know if I want to keep her at this school or have them move her. It seems that they just don't know what to do with her. She has such huge splinter skills that they don't know how to foster her abilities while also treating her disabilities. I have been told more than once that they have never had a child like her before that was so smart. I find that hard to believe, but who knows.

Any whoo- I am gearing up for the fight. Please send some prayers and vibes our way as we have our meeting and that I will make the best choice for MM.
On a funny note: MM really LOVES to repeat drug commercials. You didn't realize how many there were or how often they show them until she starts repeating them. She has asked her nana if she "suffers from chronic constipation". She asked me the other day: "Mom, do you suffer from erectile DISTINCTION? (supposed to be dysfunction)" How funny! I answered her "NO" but secretly laughed cause there is some truth to that since bed-dancing is almost non-existent around here!

Sunday, April 27, 2008

Birthday Party at the Giant Rat's Hole

Nice pic I found of the Rat!

Why is that things that are supposed to be simple are not? At least they are not when it comes to ASD and CP. My brother invited us to a birthday party for his girlfriend's daughter- it was at the hell known as Chuck E. Cheese. We talked about it all week & she actually wanted to go. She did remarkably well for how busy that place is. I had to stay with her the entire time while the other adults let their children run and play. They sat around and socialized; I ran interference for my child. She did well until that giant rat came out. It got louder and louder. I ended up sitting there with my hands over her ears. She still kept it together until the very end. It was getting super crowded by then and I was over stimulated myself (I can't believe you can't turn those damn tickets in for valium- LOL). Just once I would like to know what it is like to just be able to go somewhere & know she would be okay. Other kids are running & playing while I had to carry her many places, lift her up to things & help her learn how to wait our turn & put tokens in machines. It just comes so easily to many- I saw 2 year olds able to do these things with ease. ***SIGH*** BUT I guarantee they don't appreciate all the small things like her eating almost a whole cupcake by herself and just actually GOING to Chuck E Cheese! Woohoooo!

Friday, April 4, 2008


What is Autism?
It is a complex neurological disorder that usually lasts throughout the person’s lifetime. It is the fastest growing serious developmental disability in the U.S. ASD impairs a person’s ability to communicate and relate to others. It can also be associated with rigid routines and repetitive behaviors. It is a spectrum disorder so symptoms of ASD can range from very mild to severe. It affects 1 in 150 children, with boys four times more likely to have ASD, making it more common than pediatric AIDS, cancer & diabetes combined. Right now, there is no cure. Early intervention instruction focusing on communication, social & cognitive skills has been shown to result in significant improvements for many children.

Has it been since February???

Guess I am a bad blogger. Time just gets aways so quickly. Things continue to be hectic here, mainly with my health. MM is doing fine, except for the bout of strep throat with horrible rash she has encountered this week. My health- ugh! Some tests have come back, had more this today. It is looking like part of this is my kidneys & the other is tumor/mass thing is still being investigated. I am very scared, but hope that things will be figured out soon & what course of action to take to get me well.

I have spent the month tagging clothes & toys to particpate in a HUGE consignment sale. I dropped the stuff off today. It really is a good sale cause I will get 70% of my prices, unless they make it to half price day. I had around $700 worth of stuff!!! Yes, you read that right! Way too many clothes & toys, but I also got rid of all my baby stuff like maternity clothes, diaper bags, baby bedding, etc. With the news of my kidney problems, there is no more hope in us having another. We didn't really plan on having another since can't get pregnant without meds, my pre-e was so bad & with all MM has going on, but I still held on to stuff "just in case". It makes me sad to think I really can't have another. Another crappy part of my life- thanks for having bad luck in my health!

Haven't done much for Autism Awareness Month since so much going on. I did pass out ribbons for all my coworkers, wrote an article for the monthly newsletter at work & composed a mass email. I feel I need to do more, but just am exhausted. I guess the daily grind of MM's ASD is enough for the moment. She really is such a sweetie. Her progress is amazing! I still can't believe the progress she has made recently. Her language is developing so nicely- not always script, more spontaneous speech. Her fine motor skills are still poor, but that is CP too. She does have a lovely keyboard at school now. She brought home TWO pages of typed things today! She was so proud & I am too! I LOVE YOU, BG! (which now means Big Girl, not BABY girl as I am reminded by you a few hundred times a day)!

Thursday, February 21, 2008

BIG NEWS & Catching up

First of all, I have been remiss for I have been very sick. STILL very sick. Started off with a virus & pneumonia causing my asthma to go haywire & was hospitalized for the week of Feb. 4th. I had a rough time, including having an allergic reaction to one of the few antibiotics I was not allergic to, but am now. My immune system is messed up again. I am also having heart & blood pressure problems. My heart keeps racing & my bp won't come down. It is dangerously high, even on THREE meds. UGH! I have been off work all this time. I am afraid I am going to have a stroke. They might put me back in the hospital this weekend if it doesn't come down. I feel awful, but wanted to post about somethings as well.

MM also got very sick when I was in the hospital. She had a really high fever for several days. Since then, she has been a different child. How you ask? She is acting like a typical 3 year old (now I know she is almost 5, but it is progress). She has lots of eye contact, spontaneous speech & using pronouns, not talking in third person, minimal stims & flapping, doing things for herself, etc. I can't explain it. It is like a light was just turned on. She is also now OFFICIALLY
PEE-PEE trained during the day! She hasn't worn a day pullup since last Friday- so six days! It is wild.

We had our appointment with the physiatrist today. She couldn't believe it was the same child. She gave me a study about how kids with ASD "clear" with a fever. She said enjoy the moment & celebrate, but it will probably go away. I don't care if it does. I can live the rest of my life with this "5 minutes of something wonderful rather than a life time of nothing special". It is enough to sustain me. It feels great to see her acting & doing like a typical child. She also tested her & she has had a bump in her skills with how clear she is. She tested at 36 months rather than the usual 18-24 months, with some 30 month skill. Almost everything was 36 months!

I feel like I am in a dream & don't want to wake up, except for the pounding headache I have from my blood pressure...

I still need to update about our IEP, but that will be for another time.

Saturday, February 2, 2008

Quick Check In

Knee still hurts... MRI on Tuesday.
Did NOT talk about kindergarten at IEP... too much other stuff to address...
Will post more later, no time right now & I am still ticked off about it. Let's just say I cried alot during the meeting. :-(

Monday, January 28, 2008

I've Fallen, but I had to get up...

UGH! I fell over 10 days ago. I was carrying MM down the steps while I had my slippers on. I slipped off the top step & slid down about four twisting my left knee. I saved her though, she did not get hurt in any way. It has only gotten worse- I finally broke down & got an appointment with the doc this morning. They think there is probably something torn in there- I have to have an MRI & get a knee brace. OH JOY! I don't have time for this. She said something about if it is a big tear= surgery & PT, small tear = PT. GREAT! Maybe I can schedule mine while MM has her's....

I was just reading people's blogs & comments about their backs carrying their CP kids. So, here I am, another casualty related to CP :P

Tomorrow is annual IEP for dicussion of what to do about kindergarten. Who has the bail money ready???

Wednesday, January 23, 2008

A Nice Blessing

Being on the road we are on is not easy. However, if we weren't going down this road, I wouldn't have met alot of the people I have. I have friends that I have met in person & on the net because of MM's CP & ASD. I guess it is a reason to be thankful for sure.

I just got off the phone with one of those friends. I was calling to check on her since she has been a little MIA. She had posted a quick blurb about going through a rough spot. In calling to check on her, she made me feel so much better. It is so nice to talk to people who just get it.


Friday, January 11, 2008


That is how I would describe things for us (especially me) lately. Life is just going on around us and I am stuck somewhere in it.

We had a good Christmas. MM was overwhelmed with all the presents she got (we only buy her three, she got tons from everyone else). I had to work Christmas day, but we had a nice little thing Christmas eve. What happened was almost unbelievable. We were at my mom’s eating & then DH went to put the presents out. We told her Santa would come early. He sure did! When we pulled up to the house, Santa (the mail man dressed up) was actually delivering packages with presents! Someone asked her if Santa brought her presents on his sleigh and she replied “No, he drives a mail truck”! LOL…

The bittersweet I am talking about are things like…
THE SWEET- My sister came to visit with her little boy. He is almost two years younger than MM. I was amazed by his skills. He is so funny & cute. I had a blast just watching him & wished we lived closer so I could hang out with him more. My sister was great too. I really miss her & we had a good time just really doing nothing but hanging out.
THE BITTER- MM didn’t want anything to do with him. She was very upset nearly the whole visit. She spent many of the days flapping & withdrawn. It also is such an eye opener to see how far behind she really is. My nephew is passing her easily & she is kind of stuck around 24 months.

THE SWEET- I saw a friend who I haven’t seen in quite some time. Her daughter was born a week after MM. It was great to see her & I loved to hear her stories about her little girl. She climbs trees, she rides a bike without training wheels, she is getting ready for kindergarten.
THE BITTER- Another reminder how far behind MM is. She rides a bike- just an AM-Tryke with lots of help. She is slowly getting there. She can’t climb a tree & the kindergarten part I will address.

THE SWEET- One of my best friends is pregnant! I am so excited! She got pregnant right out of the gate, first try. They just got married in November! What a lucky girl & how lucky I am that she is my friend. She is truly amazing!
THE BITTER- I will never be pg again. We just can’t. Too many risks for me & for the baby. I also had another birthday & I’m not getting any younger. It is so easy for some people & so hard for others.

THE SWEET- IEPs for all the kiddos in MM’s class are coming up. I have heard them talking to the parents when we pick the kids up. Almost all of the them are preparing for the transition to a typical kindergarten class.
THE BITTER- MM’s annual IEP is coming up. We are not preparing for typical kindergarten. She will continue on in a CDC class with some inclusion in the typical kindergarten. All of her classmates (except for one) will be leaving her behind. She is probably the brightest child in class academically, she just has poor motor skills & very poor social skills. We got her report card & she has made very little gains in the last year. She is still stuck where she was a year ago. ***sigh*** I can feel a very long meeting coming on.

I want to add more, but she is standing her having a meltdown about her DAFOs & has a poopy pull-up. I know I have been MIA here, but I have been trying to keep up with all of the blogs I love. Sounds to me like everyone else has a lot of introspection going on as well! Take care & hope to be back soon.