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.

New Year New ?????

Well, I posted in September about all that I was going to do with the blog, etc.

I obviously haven't done it. I haven't done much of anything really. Head in the sand, trying to get by, day to day living.

We are here. We have good days & bad days. We go through patches that are much rougher than others.

We've had quite a bit of illness lately. The delicious clarity after illness often carries me through the sickness. I loathe when she gets sick, but enjoy the time after. I wish they could figure out what causes it & bottle it. I know my child is special & amazing. When she is "here" it is icing on the cake. I wish you could really see the difference. Those who have experienced it understand. A glimpse of my girl without autism.

We go see the specialist this week. We are very concerned about her CP. I know CP doesn't get worse. However, she has grown six inches this last year. She keeps falling lately. I am hoping its an inner ear infection, off balance & its been bitterly cold outside thing, but I am afraid. She has always been one to want to walk everywhere until exhaustion. She is now relying more on her wheelchair when we are out. I worry that her cords are getting tighter. I am glad we have the appointment coming up sooner than later. I hate worrying needlessly. I always feel like I am sitting waiting for the proverbial shoe to drop.

IEP time is coming. IEP time is coming. AND surpise!!! they didn't do several things listed. I am so disillusioned with the school & the state. I filed that complaint & they rushed to put a bandaid on the six inch gas. State felt the bandaid was good enough. We are still bleeding all around it, but hey, they DID put a bandage on it! ARGH!!! Will let you know what happens there.

Hope you all have a happy new year & that if you make resolutions, you are able to keep them.

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

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


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


Yep, the b!tch is back.


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

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


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

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

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

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

Back to School

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

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

Not me.

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

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

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

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

Cheer Up...

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

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

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

Then along came F.ace.B.ook.

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

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

All this history leads up to the following:

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

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

OOOOkkkkkkkkkkkkaaaaaaaaaaaaaaaayyyyyyyyy.

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

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

No.

NO.

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

Summer time and the livin's easy...

Well, not really. BUT it is being good to us.

MM is doing well at home. She has made a few subtle gains. I am very excited about this. Any gain is a good one. We have been stagnated for so long, that I am doing the happy dance about them.

She is only doing two days at a summer program, one day with therapy and one day with her baton lessons. Otherwise, mom & I are working with her. What. a. difference! Her behavior has been quite good, ticks/stims way less and just an overall sweetie. I see her little personality peeking out through the ASD and she has a wonderful sense of humor. She has even made some jokes.

After talking to my friend (who is a special ed teacher), she said maybe the school day is too long for her. I am wondering if she is right. I have the girls at therapy documenting her behaviors, gains, etc during summer break. Once school starts & we see how things go, I might consider decreasing her day. If she is not making any gains because the day is too long (too much going on, too many interactions, etc), then I might shorten it.

We haven't really done much else. Life has been kind of boring, but boring is good. I have been slack on the blogging/being a blog buddy front. I guess I have been on a blog break. I said it before, I have a bunch of posts started. I'm just not sure I want to finish or publish them. They came from when I was in a dark place. I am back in the light now. Depression is such a miserable thing. Hiding it is even harder & worse.

Love & light to all of you. I'll be back to commenting before you know it!

The Exhaustion

I am so tired of fighting everything. It really gets old. I didn't realize that when you become a SNK mom you also have to turn into a prize fighter.

The whole school thing is really wearing on me. I talked to the lady at the state BOE yesterday. I am not too convinced that they will do the right thing. She was attempting to tell me that they didn't have to do certain things. That sent up huge red flags & set off alarm bells in my brain. It is CRAP! They are not above the federal law. I am just going to try to relax a bit & wait until I hear more from them. They were supposed to call today & so far, at 2:30PM no call. Again, not very convincing. I am mentally preparing myself to retain the attorney and go to due process. I am not sure mediation can help these yahoos. Ding-Ding Round 2

Insurance. What more is there to say? Can't live without it if you have medical issues, going broke paying for it. Now, my latest fight is with our dental insurance. Even worse, it is from almost a year ago that I am just finding out about this. Things they say they pay for they are denying. I was slightly embarrassed when we got to the dentist this morning & was told we had an outstanding balance. On the dentists behalf, they never sent me the bill. I would know if it did cause that is the only dental claim I made last year. WTH? (shame on me for not getting myself to the dentist) I am also still trying to get Ci.gna to pay for some stuff from my hospitalization too. Ding-Ding Round 3

Other things wearing me down:

My stupid job. Don't get me wrong, I love what I do. I am just sick of all the other BS. Just let me do my job & take care of the patients. Stop inundating me with all the extra junk you expect us to do. Also, don't tell me every little thing I do wrong & never tell me what I do right. I have taught MM to say Upper Managment Stinks. That makes me smile.

My rotten sinuses are requiring another surgery. Yep. Last one didn't take. This one is way more risky & kind of my last hope. Not too happy & haven't even scheduled it cause I don't want to deal right now. This also is not the ideal time of year for me since allergy season is about to kick in (hopefully, come on Spring).

MM needs to be sedated & intubated for a dental procedure. Her baby teeth aren't falling out & the permanent teeth are coming in like crazy. I believe he said 4 teeth will have to be pulled, possibly more. She will also get her xrays & teeth cleaned then too cause she wouldn't let them in her mouth AT ALL today. Well, she wouldn't let the yahoo hygienist clean her teeth. The girl was really a butt & it is a pediatric office! I just don't want to go into the way she acted, but I was actually glad my kid has a huge gag reflex & throws up at the drop of a dime. TWICE on her! LOL Serves her right for not listening & being inpatient with a child. Needing to go to the hospital for dental procedure = more insurance fights!

Like everyone else, all the doctor appointments come up at once. We have had 4 appointments this week alone. Bye-bye any extra cash we had!

Now, to end things on a good note:
I have started clipping coupons like mad. I have saved over $200 that last few weeks. There are some really cool websites out there to help you.

I have found a really nice community resource I wasn't aware of. It is an olympic sized indoor pool & the price for a membership is super, duper affordable! The guy was really nice & gave us a free pass to check it out tomorrow. Can't wait to take my little fishy.

I have time off in about 3 weeks!

Spring is on the way! We had a wonderful thunderstorm here today. The crocuses are blooming & the daffodils are starting to spring up.

Brain Thaw

The sun has come out. I have my formal complaint filed, I am just waiting to here from the State BOE. If interested, here it is. Hope this helps if any of you ever have to do it, although I pray you never will. (all names have been replaced with *****) Let me know what you think, now that I feel I have a degree in special education law! LOL

Attachment to Formal Complaint

Note: Exhibits are attached with complaint. Recording is in minutes from the recording this parent made during the meeting.


#1 Failure to do Reevaluations in a timely manner.
--The District failed to not only provide but did not even begin the reevaluation process within the required time frame. The triennial reevaluations were due on March 8, 2009. (Exhibits A, B, C, D) The District did not even request for the reevaluations to be done until September 23, 2009 (Exhibit E). The District is out of compliance with IDEA part D Sec 300.303. Even being late, they were not done in a timely manner nor provided in a timely manner. The reports were still being done up until the IEP meeting on February 8, 2010. (Exhibit F.1) The District is out of compliance with IDEA part D Sec 300.301 (c) 1.i.
#2 Failure to comply with request to Review Records and Inspect Records in a timely manner
--The District failed to allow this parent to inspect and review any and all reports prior to the IEP meeting scheduled on January 26, 2010. An email was sent to *****, Resource & Case Manager, on January 20, 2010, requesting any of the reports, updates evaluations (which should have been triennial reevaluations) prior to the January 26, 2010, IEP meeting (Exhibit G) Only 2 reports were received, occupational therapy & physical therapy. The meeting had to be re-scheduled for February 9, 2010. Again, an email was sent on February 1, 2010 requesting the remaining reports (Exhibit H). An incomplete speech/language report was sent home with ***** on February 8, 2010 (Exhibit F.2). The District is out of compliance with IDEA 300.613 (a) comply with a request without unnecessary delay and before any meeting regarding an IEP
#3 Failure to comply with request to Review Records and Inspect Records in a timely manner
-- The District failed to allow this parent to review & inspect the psychology triennial reevaluation when requested. Emails were sent by this parent on January 20, 2010 & on February 1, 2010 (Exhibits G, H), requesting to review any reports prior to the IEP meeting. An email was sent on February 4, 2010, by *****, Resource & Case Manager. It stated that the school psychologist’s supervisor rather them go over the results with parents in person & she would be happy to do it 30 minutes prior to the meeting (Exhibit I). I then inquired during the IEP meeting on February 9, 2010 (which was recorded by this parent & The District), why I couldn't have had the report prior to since it is my right. *****, school psychologist, stated “it is our county policy to not” (Recording 1:46:52). The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP
--The District has failed to allow this parent to review any data collection or anecdotal made supporting the IEP goals. This parent asked multiple times during February 9, 2010, IEP meeting to see the data supporting goals from disciplines (SL/T Recording 1:40:12, 59:44; OT Recording 1:03:34; Resource Recording 21:05). As of this writing, no data has ever been provided to this parent. The District is out of compliance with IDEA 300.613 (a). comply with a request without unnecessary delay and before any meeting regarding an IEP

#4 Failure to do Re-evaluations in a timely manner.
---The District failed to do a formal physical therapy reevaluation for my daughter’s triennial reevaluation (Recording 1:12:45). The physical therapist, *****, submitted a report to us on January 27, 2010, for the February 9, 2010, IEP meeting (Exhibit J,). The report was almost the same report from January 2009 (Exhibit K). It had errors in it as well (Exhibit J.1, J.2). The District is out of compliance of IDEA part D Sec 300.303 (b) (2) must occur at least once every 3 years.

#5 Failure to make Assistive Technology Available in order to receive FAPE
---The District has failed to provide what is required for my daughter to access all of her learning materials through her Assistive Technology (a label maker for answering worksheets, a word processor for writing homework) (Exhibit L). Instead the District has continued to require me to fund the label maker & refills, printer ink for school, printer ink for home, paper etc. (Exhibits M & O, Recording 53:40, 53:32 52:19) The occupational therapy reevaluation (January 12, 2010) clearly shows a need for Assistive Technology, listing label maker & computer (Exhibit N). The OT also stated during February 9. 2010, meeting that “underlying skills to complete written expression in a traditional fashion are limited and delayed, so there has to be some type of strategies for written expression” (Recording 54:28). The District has also refused to include the exact needs within the IEP as requested, only placing AT- Adapted Writing Tools under Supplementary Aids on the IEP (Exhibit R). The District is out of compliance with IDEA 602 (2) (B) purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by such child; 300.6 (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices & 300.105 (b) On a case-by-case basis, the use of school-purchased assistive technology devices in a child's home or in other settings is required if the child's IEP Team determines that the child needs access to those devices in order to receive FAPE.

#6 The District Failed to provide FAPE by addressing goals that were met, instead continued to just allow the skills to stagnate instead of proposing new objectives/goals for there to be consistent educational progress (Exhibits P & Q).

#7 The District has failed to appropriately include within the IEP what is necessary for my daughter to travel safely on the bus under supplementary aids/services. A letter of concern in regards to bus safety was submitted by Dr. ***** at IEP meeting held April 28, 2009 (Exhibit S). These parents also expressed concern in The District wanting to remove daughter from a five point harness on the bus at meeting on February 9, 2010 (Recording 1:07:39). The principal, ***** stated “Assistant said she is getting too big for car seat on the bus. The driver has suggested maybe looking at a seat belt.” (Recording 1:09:34, 1:08:00) Parent stated “Seems straps need to be readjusted every morning like a smaller child rides in the seat too” (Recording 1:06:25, 28:37). The District is out of compliance with **** State Board of Education Rule 0520-1-9-.05 (3) (d). There were also bussing recommendations made at April 28, 2009 meeting that were not added back to current IEP (Exhibit T, PT discussed this Recording 1:09:15). A letter with list of objections was sent on February 23, 2010, to **** (Exhibit U). As of writing of this complaint, no reply has been made by The District.

#8 The District has continually failed to appropriately include any of our parental concerns on the IEP (Exhibits U& V). The February 9, 2010 IEP Parent Concerns part is left blank, even though we had several concerns in the meeting (Exhibit V, Recording: 1:28:45, 57:03, 56:00, 30:42, 24:50, 14:42) We were never formally asked our concerns as meetings in the past. The IEP is left blank on the parents stated draft (Exhibit V).

Cool Game!

Since I have a blog, one can kind of guess I love the computer. I also like letting MM play on the computer, but don't just want to fill her mind with junk. She sometimes has a difficult time playing the games due to her hands, the visual parts or the noise of the games. I would also like a way for the computer to help her with some of the issues related to autism.

What's a mom to do?

Well, after checking the blogs I follow, I found out my friend, Colleen has posted a really cool contest! Go check it out!

BUT, before you go there, look at the website of the game creator! You have to tell her which game you would like in a comment to get an entry. They also have other items available on their website.

If you take your child to therapy, I am sure a therpist would love to add this to their arsenal. Go on, enter & go give Colleen some love!

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.

What's Going On

Busy, busy, busy.

Let me start with a chair update. All that I have to say is Arrrrrrrrrrrrrrrrrrrrrrrrrhhhhhhh! Insurance really can be a-holes. Tomorrow I send off all the paperwork and should hear in 15 days their denial. I know, way to be positive, huh? I am okay with it.

"What?" you are saying?

Not too fret. Our chair will be paid for either way. Nope, not out of my pocket. The wonderful people who we order the chair from found us a resource. It is for people like us, who work & pay our bills, but can't get SSDI or Medicaid. We should have our chair by mid March. I am very excited. If Ci.gna steps up, the provider will reimburse the charity. If not, we have MM's chair. A win-win situation. I am so very thankful that we are able to get funding from a wonderful charity. I will be writing a letter & sending pics for sure to them. They will be at the top of my list for people looking for charities to donate to. I must also mention all of my wonderful friends & coworkers who badgered the CEO of the DME place to get her a chair as well. It worked! Something to be excited, happy & positive about.

Another positive- CLARITY. We both got a horrible cold (landed me in the hospital for 5 days), but the deliciousness of clarity that comes after illness. I have spoke of this happening before to her. I don't know what it is, why it is, or how, but it is SWEET! Beautiful glimmer of what she would be without ASD interfering.

Guess what time it is?

ANNUAL IEP

Yep, another year has flown by and we are looking at our annual on Tuesday. It was scheduled a few weeks ago, but alas, I was trapped in the hospital fighting off the wheeze.

Now, I am not too nervous. These are getting to be old hat.
YEAH RIGHT!
I HATE THESE THINGS!

BUT, I do have lots of good things to report. Not good for them, but good for us. I am probably going to be retaining the services of an attorney. Can you say "OUT OF COMPLIANCE" big time???? My wonderful, amazing friend who was a special ed major & now a vice prinicpal, is helping me. She said she would do a conference call if needed. Just allow me to high-light a few of the problems we have.

---We signed back in September to have our 3 year re-evals done. We still have not heard about them. We will get them at the meeting. Federal law is 65 business days!

---I asked for the reports prior to the other meeting. Then we rescheduled. I only have 2 reports. I am entitled to them at least 2 days prior to meeting.

---- I was told I could not have one of the reports, but they would go over it with me 30 minutes prior to meeting.

----The wonderful school physcial therapist (sarcasm, sarcasm, sarcasm) did come up with a report. It is the same freakin' report from a year ago. She changed the date only. It still says MM is 5 & in kindergarten! This is the one who says she shouldn't wear her DAFOs to school & should be on a regular ed bus. I am so taking her down. This is MY CHILD'S well-being she is so carelessly messing up. This also, the one who thinks she only needs 30 minutes a MONTH of PT!

--- I have all of this in writing via emails and the reports.

---I am asking for all the anectdotals they share with each other & the data points they collect her goals on. I can almost guarantee it won't be available.

---I will be recording the meeting.

---I am asking for a PC2Go (it is $500) and a program to scan her work. I had to request the AT (adaptive tech) person to be there. They weren't even going to have her! I asked to talk to her back in the meeting & have never heard from her! BS!

My bestest buddy is very confident I have a wonderful case & am excited to get MM what is necessary& appropriate for her to function.

I know this a quick bomb to drop with all of this info. But, as you can see, I am busy, busy, busy getting all of my ducks in a row.

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?

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.

The Party, The Bus & Other Fuss

I left it up to MM to decide about the party. She chose to go when she found out swimming was involved. I was so very proud of her for choosing to go to the party. It wasn't as bad as I imagined it was going to be. She enjoyed herself swimming. She swam through the crowds of people. She jumped off the diving board several times. She tried to cannon ball like the men were doing. She tried to give her mom a heart attack by wanting to go off backwards like the men. I am all for trying new things, but I wasn't ready for THAT! She enjoyed whacking the pinata. I only got a little sad a few times. First, when I saw all the other moms congregated talking while their children played with each other. I had to run interference for MM & she wanted me right there with her. Second, when all the children lined up to make their own cupcakes. Of course, they had a blast, getting frosting & sprinkles everywhere. She would have none of that, choosing to leave her cupcake plain & go inside for a glass of milk. The last time was when the pinata finally got opened. All the children jumped on the candy, she got pushed back & then just stood there. I finally reached down & grabbed the pinata to shake out some stuff for her. She doesn't even eat candy, but I want her to participate as much as she can. She was excited to pick up some stuff. She is also not greedy when it comes to stuff like that, only taking 3 pieces. That made me proud. All in all, not too painful. I also got a pretty nice tan out of it- BONUS!

School has started. I took her the first day. It was only a half day. She did well, even telling me she was "settled". I asked if I could go & she said "sure". I picked her up. She kept saying over & over she was a first grader. Day two she rode the bus to & from school. It seemed to go okay. She is very stimmy when she gets home & starving as well. The afternoons have been spent hearing her say "I not bossy" over & over for HOURS! She is not eating all that well at home or at school. This is normal for her until she adjusts. Haven't heard from the teacher which I do not like, but will set up a system with her next week. We will have a team meeting next week to discuss how it is going for her. The OT & PT have been quick to point out the fact she has no DAFOs on her feet. The short bus, which is now a big short bus, backs up the road every morning & afternoon. The bus owner was a little concerned about traffic letting the bus driver back up. He said he would get the police out there daily to direct traffic if need be. All I could think of is: GREAT! It's not enough we have the short bus pulling up everyday to draw attention, now we will have the police too. Thank goodness it doesn't seem to be a problem so far.

The DAFOs are being replaced for the third time. We are going back to what we had. We went yesterday to be recasted. She complained often about her feet being tired. She would even say her feet hurt, which is quite unusual for Miss HighPainThreshold. The PT wanted to have another strap added to them. We had them adjusted, redone, padding added, cut down. They kept leaving red marks on her ankles. The orothotist said no, enough is enough. She obviously still need the extra support, having to adjust them that much is not acceptable for a custom brace, put her back in what she had. The doc was called & she confirmed our decision. Sorry, PT, sometimes Mommy, Daddy & Nana know best. The orthotist is putting a rush on them, so hopefully they will be her next week.

This is getting lengthy, so I will wrap this up with one last thing. I had a comment left a few weeks ago about joining a health community. After being reviewed by the CEO of the site, I was accepted. I am know officially a member of the ASD community on there. See the new button over there on the left -------->? Pretty cool, huh? It will upload my blog posts there for people to read & send them here. On top of being a featured friend and now this, I expect my traffic to pick up even more. I am excited to connect with more people here in the blogosphere. At first, I just wanted my little blog here, in my little space, to have a place to write my thoughts. I have even told some people IRL about my blog that I wanted to keep a secret. I can't believe that people actually want to read these (crazy) thoughts!

She is almost done with therapy. Hurray for free wi-fi so I could update. Working the weekend, so don't be surprised if I am not around.

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.

Opinions are like...

As one blogger that I love to read calls it "Ass-vice". People are always full of it, willing to dish it out, even when not elicited. I suppose most mean well or are truly trying to help. I just don't know about it.

For example, my mother's friend (who also happens to be a nurse & is well aware of MM's disabilities) came into town. This lady has been a friend of my mother's for years & I really do adore her. She is quick witted, funny & sarcastic- my kind of humor for sure. MM knows of the friend, but is not familiar with her. She spent an hour with MM & I this morning. She was in full on ASD mode, complete with vocal ticks and flapping. To some, her voice & actions appear to be naughty behavior. She was very patient with her, which is unusual for those who don't really know her. She did a great job of ignoring the stims, tried to engage her & just generally appeared at ease with the situation (we went out to a restaurant for breakfast that is very small & we were the only ones in there to help out MM). Overall, it was a nice, short visit for MM. She tolerated her well.

After dropping off MM at school, she then proceeded to deal out the assvice. This wasn't something I would normally expect from her. At first, she told me what an amazing job I was doing. Thanks. No problem with that comment. She then gave me the standard God knows who to give the special kids to, etc. Although always well intended, it doesn't really ring true to me. Next came my favorites. She looks just like any other kid, just a little weird. Okay. Is she supposed to look horrible? She will grow up to be just fine. She will surprise you by the time she is sixteen. You won't be able to pick her out of a crowd. She will have a job & everything. You will truly be amazed, don't ever doubt her or give up on her. STOP RIGHT THERE! YOU HAVE A FRIGGIN' CRYSTAL BALL? WOW! I CAN'T BELIEVE IT. I am so glad you came into town to spend this hour with my child & tell me these things. I didn't realize that all of the hard work, hours of therapy, money spent, fighting with the schools & insurance companies, pushing, pushing, pushing was doubting & giving up on her. I have never believed she could surprise me since she has proved everyone wrong since the day she was born. I was definitely giving up on her at age 6, but since you just told me all of this, I guess I will keep working with her.

I just can't believe that in a mere decade, everything will be okay. So, now I have a time line of when my stress will be gone & our happily ever after will begin.

End of sarcasm.


Sometimes, I think a book needs to be written of things NOT to say to parents of SNK & what the right things are to say. I am sure it is out there somewhere and if not, it needs to be. How about posting your best ASSvice received in regards to your child or any thing else in your life?

Sounds Interesting

I came across this interesting article today.

I am not really sure what I think of this. The education system early on is wanting LRE/Mainstreaming. Yet, here is a college doing the exact opposite. I will have to keep a close on eye on this cause we have about 12 years until college. Maybe less with the genius here!

Literally Autism

Me: Did you toot?
MM: No
Me: Yes you did. Peeeuuuuuu. That is really stinky.
MM: Why thank you.

While playing the new Wi.i Re.sort Game:
MM: Let's play the skydiving game.
Daddy: Get ready to free fall. They opened the door.
MM: Pride goeth before a fall. Is that pride there?
(she has been reading Aesop's Fables)

MM: Mommy chase me so I can be TURDIFIED
Me: What is TURDIFIED?
MM: It's where you chase someone and make them frightened.

Spell It With Me Now: S-T-R-E-S-S

Didn't realize it has been so long since my last post. Can you guess what has been going on from the title? Things that make you go Hmmmm...

Since this blog is mostly about MM, I will start there.

She finally recovered from that raging UTI. We did not get the great time of clarity we usually get post febrile illnesses. Nana (my wonderful mother) & I managed to sneak her off to the beach for a few days. She has been begging to go to Folly Beach, SC since she found it on a map. It was a quick trip there, a mere 6 hours, from landlockedville. She LOVED it. She did great. She just laid at the end of the surf & let it wash over her. She played for several hours. The weather was perfect- slightly overcast, not too hot. We swam in the hotel pool for over an hour both nights. It was the first trip with her that I ever really got to relax for a day. We left on a Wednesday morning & returned Friday. Nana & I wanted to stay another day, she would have none of that. It was time to "go to MM's house". It was fun while it lasted. The ride home wasn't good. There were a few accidents on the interstate, so it took 8 hours to get home. Lots of stimming while stuck in traffic. So much for relaxing...LOL

We have been having major DAFO problems. Our orthotists is pretty great (Big ups to Bill!). The PT made the decision to go to a smaller/shorter brace. I am not opposed to trying it. We went & got casted for new ones. Besides, the tall ones were too small causing blisters & pressure points. I don't know what is going on with Casc.ade (the company who makes the DAFOs). We got the first pair & they were HUGE. So, after trying them for several days and one PT appointment, a call was put in to Bill. They reordered the DAFOs with some mods. It then took another 2 weeks to get them. In all, the girl had been without braces for 7 weeks. The new ones aren't much better. She is having a hard time in them. All kinds of explanations have been given from too big to the shoes over them making them too tight to needing to learn how to walk with less support to needing to get restretched. She complains they hurt all the time. This is the child who never says a peep about pain. They are getting a few more days, the I am demanding a recast and going back to the tall ones.

Due to the lack of DAFOs, growth spurt and her CP, she is having lots of trouble doing long distance walking. She has a push chair for this reason. Yes, it is a Mac.laren Major. She sees this as a stroller. I am informed a million times a day that she is not a baby. She is starting to refuse to ride in the Major, but demanding to be carried or lifted into the grocery store cart. She is getting quite big. The specialist told me that we would need a wheelchair around the age of 6 but I put it out of my mind. "Not my child". Well, we do. I can't carry her & lift her up so high forever. She also can't be stuffed into a grocery cart much longer. She tries to rock herself to move the stroller & pushes off of stuff to get around. I called the specialist to get an appointment. We can't get in until January. Yes, you read that right. JANUARY. We need to get the ball rolling on a chair now. At least the nurse is kind, knows I am not a doofus & took pity on us. She is going to send the order to the insurance company & try to squeeze us into a seating clinic. Now, to convince the hubs that she NEEDS the chair. He lives in denial & doesn't think she needs any assistance.

School starts in a few weeks, no idea who her teacher is going to be. I am trying my best to prepare her. I don't think she realizes how long her day will be. I think she will have a hard time transitioning & has had quite a bit of regression this summer. As I posted before, her summer school is not going as well as last year. She also had an ESY in addition to the private place we put her. Lesson learned for me that she needs ESY. I know they will say she doesn't & has no regression. We will see.

Now, onto me.

Work has been super stressful. We have had some really sick people. In addition to the stress of that, there has been so many changes going on. Every day it is something new to learn & try to remember to complete. We have new residents (it is July) who don't know anything. I have also had someone to orient every single day on top of my assignment. I come home exhausted which leads me to the next topic.

Sleep. I have been having bouts of insomnia. I have also been having bouts of snoring where DH can't even sleep in the bed with me. I had a sleep study two weeks ago. I am waiting for the results. I will probably have to have another one to get a C.PAP machine. UGH. I hope it will help with my headaches, lower my blood pressure, help with my depression & maybe my exhaustion. They kept asking if I was tired all the time. My answer: I have a child who was born premature now with disabilities. I have been tired for SIX YEARS!!!!

DH brother had a heart bypass last week. He is only 42! He has to have another major surgery in six weeks for a bypass on the arteries in his legs. Very scary. I am terrified DH will end up the same way. He is only 33. He has been so worried about his brother. He lost his other brother in a terrible car accident about 18 years ago. He appears to be recovering well right now & even went home earlier than expected.

All of this stuff is giving me major panic attacks again. This is probably the reason for my insomnia as well. I can't find time to go back to the therapist. Maybe when the girl is in school I will. I don't know how much more medicine I can take. I don't want to take any more. I just want to know how to cope all the time. I feel like I flounder every day. When I look around me, it seems like everyone else has it all together. Even the SN parents I know in real life don't seem to be floundering or they are better at hiding it than me.

When does it ever end? I have said it before & I will say it again:

WHERE IS THE GIVE ME A BREAK LINE?

My apologies to all for my lack of posting on your blogs. I do try to keep up with you. I am praying for those who need prayin', thinking of those who need thoughts, laughing along with those who laugh & shedding tears for those who need water works. Thanks to you all for your comments & welcome to my new readers. It is amazing how cool the net is & how people from all over the globe want to hear about our little family. Much love to you all!