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.