LOVE & PEACE for USA
It's a Grand Old Flag
Cha-cha-cha-cha-chaaaaanges!
14 years ago
Showing posts with label Life in General. Show all posts
Showing posts with label Life in General. Show all posts
Sunday, September 11, 2011
Never Forget 9.11
Cried just as hard today, 10 years laters, as I did the day it happened. Watching all the news coverage was heart wrenching. Tried to explain it to MM. Our babies will never have the innocence we had before that day.
LOVE & PEACE for USA
It's a Grand Old Flag
LOVE & PEACE for USA
It's a Grand Old Flag
Saturday, January 1, 2011
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.
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.
Friday, August 27, 2010
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????
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!
Tuesday, August 10, 2010
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.
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.
Thursday, July 15, 2010
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!
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!
Friday, March 12, 2010
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.
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.
Friday, February 26, 2010
Brain Freeze
And it's not from this ridiculously cold winter either.
I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.
Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.
It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.
After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.
Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!
On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!
And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.
I am spending every day off & each spare minute I have putting together my administrative complaint for the state board of education. Each complaint I have has to be backed up by the correct part of the law as well as show data (or lack of) supporting my complaint. It is a large amount of research & tricky wording to get the complaint "just right". I have worked on it for several hours each day off until my head hurts & my eyes can't focus. I feel like I am back in school again too with as much work & research I am doing here.
Sadly, the list of complaints I have is at 8 items. This means that MM's rights under IDEA and to receive FAPE have been violated that many times. It is ridiculous! This school district is so lacking & they have a culture of poor service for special education. I can't figure out if it is the entire county or just this school. I think it is a mixture of both.
It makes me even sadder to think that I will be putting up with this for at least the next 11 years. I hope that we will be able to eventually sell our house & move to the next county over. I am not naive to think moving will magically make all of our problems disappear, but I do think a large majority of them will be alleviated.
After I file this administrative complaint & receive notice they got it, I will be filing the papers for mediation. Waiting to file for mediation is in hopes that it will give me some leverage when they realize they are being investigated. This was on advice from a wonderful parental advocate. She is so super helpful! I need to get her & my bestie a gift card once this is all done. I am hoping I do not have to go to Due Process, but will if needed.
Have you ever had to file a complaint, go to mediation or due process? If so, I would love to hear from you!
On a different note: Some of these feelings I keep posting about may be medically related. I had a dr appt the other day. I have had some problems with my heart since this last illness. The dr checked my thryoid. It appears I have a major hypothyroidism! (googl.e some of the symptoms and you will find many things I have complained of: severe fatigue, loss of energy, weight gain, difficulty losing weight, depression, headaches, allergies that get worse, hypertension, increased heart rate, lack of libido, memory loss, irritability, fuzzy thinking, difficulty following conversation or train of thought). I am curious to see if some of my elevated BP comes down with treating this, as well as my depression. Fingers crossed that it is a simple little pill that will give me the boost I need & help get me off of some of the crazy high doses of BP meds & anti depressants!
And MM has ANOTHER cold/upper airway infection. I hate auto immune issues.
Sunday, February 21, 2010
Where are you?
I miss the old me.
How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.
After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.
I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.
We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.
Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.
So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.
How I used to describe myself:
Love to laugh, joke & just have fun. A perfectionist who likes to succeed & do everything as the best. Not a jealous type. Not quick to anger. Peacemaker, fixer, go-getter. Not a yeller or a fighter. Assertive. Naive. Independent & self-reliant. Dreamer but a serious planner, who can be spontaneous (especially when it comes to road trips) Never skinny, but fit & curvy. Organized & a good housekeeper.
I haven't been me since May 2000. Almost a decade since I lost myself. Time flies. I realize we all grow & change. This isn't just that.
After my bout of M.RS.A infection that could have cost me my life, I changed. That was a good thing. It made me appreciate life a little more. It made me not take things for granted. It scared me too, facing my own mortality. And I packed on weight.
A couple years later, we started trying to have a baby. It was hard and we lost a pregnancy. I fell apart. Trying to conceive took a toll on us, as it does everyone. Again, I changed. That brought on my first bout with anxiety/depression. I fought through it, with a little bit of meds. It made me angry, sad, jealous. I found out I wasn't good at everything I tried. I found out I can fail. I found out I do have a jealous bone or two in my body. Things that aren't all bad, but certainly different feelings for me. And I packed on weight.
I finally got pregnant with MM. I never complained at all during the pregnancy. It had a rocky start and horrific all-day sickness through out the entire pregnancy. I made it farther than anyone thought I would. I just kept plugging along, one day at a time. It wasn't the perfect pregnancy. Nothing went as I planned. It was okay though. We were having a baby. Then I developed preeclampsia & all things changed. It certainly was different being on the other side of the incubator. I had to rely on others to take care of me AND my child. I learned at times I was helpless. I realized I was, once again, a failure at something. I again learned anger. Anger at all the easy pregnancies; anger at babies being born on time; anger at ladies who got to have their babies in the room with them & leave the hospital with their babies. I learned I could be passive-aggressive with NICU nurses. I lost my ability to speak up when it came to MM & what was best because I was so sick myself. I also got intimidated by others cause they could care for my child better than me.
We brought her home & I thought we would live happily ever after. Wrong- there went my naivity. She was a lot of work, high maintenance. Slowly clutter over came the house. Then one diagnosis after another came. I was constantly on the road, going from one doctor or therapy to the next or people were coming to the house for treatment. Life became a whirlwind of this stuff along with working nearly full time. Something had to give, so the house became kind of clean and cluttered, not neat & spotless. Once more, anger boiled up cause my life wasn't kinder.mus.ic, mommy playdates & on time milestones. Helplessness came on cause of all the therapists knowing how to help fix what is wrong with my daughter. I lost all my spontaneity cause of all the incessant appointments, the autism, the sensory issues. I lost alot of my dreams. I learned I can't fix everything. More anxiety & depression set in, once I woke up from the first year fog, but it settled in and has stayed. I learned how quickly I could get angry at everyone when stressed. And I packed on weight.
Moving to the public school system was a real eye opener. I have learned I can fly off the handle and go from zero to pi$$ed off in 0.2 seconds. I have learned I can yell (at whoever is nearby) and FIGHT. OMG, can I fight, but mostly out of necessity. None of this is fun. I do have fun sometimes, but most of my life is stress & work.
So, like I said, I miss the old me. I am working hard trying to find parts of the old me as the new me moves through this life. I am trying to lose weight. So far, I have lost 11 lbs since the beginning of the year. Pretty good considering I have been on large amounts of ster.oids for the last 3 weeks. I have started keeping up with the house again. It has never been dirty, but it is now decluttered & super clean the way I like it. I am being more assertive when it comes to matters of MM and not just taking for granted what they tell me. I am working on not being so quick to anger & trying to be the happy-go-lucky once more. I am learning I don't have to be perfect all the time and its okay. I don't know if I can ever have back the spontaneity I used to enjoy with all of MM's issues. We ALL are affected by autism in that way. I am only feeling moderately depressed at times, not the severe gripping kind I have felt in the past. (That's not to say it won't creep up on me and grab me again. I take my meds & I will run to counseling when I feel it starting if I can recognize it) Most of all, I want to have lots of fun again. I don't know how I will get there, but I will, slowly but surely.
Saturday, February 20, 2010
The Give Me a Break Line
Hey! Thanks for all the prayers, thoughts, etc cause it worked! His heart is clear this time (he's had stents in the past)!!! It is probably a gi thing like reflux or a hernia. I am so thankful!
We actually got a pass to the Give Me a Break Line for now! Woohoo!
We actually got a pass to the Give Me a Break Line for now! Woohoo!
Thursday, January 7, 2010
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?
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?
Monday, November 30, 2009
Fighting the Fight
Trying to, that is. A losing battle it has become.
I haven't posted in several weeks. I make attempts to sit down & blog, but nothing comes. I have lots to blog about, but can't make my finger move over the keys to bring out the words.
What fight am I fighting, but not winning?
Yep, those three nasty enemies of mine are trying to take over again. Depression, anxiety & insomnia.
Now, most of my personal issues are job related. My work has been super hectic. We have a lot of BS coming from management as well. There is just no time or place to decompress there. We are literally being trusted to manage people's life support, yet we aren't allowed to manage our own breaks at the moment. I have worked as a professional snot sucker for more than 15 years (makes me sound old!!!). I have never been treated so child-like in my career and I find it to be degrading. I came closerthanthis to quitting the other day, but I can't. I am stuck.
I need the FMLA for MM. If I go somewhere else, I will not have that for a year. She can't afford to be out of therapy that long. I need the insurance. Although I pay out the nose, I do have pretty decent insurance. Her health (and mine) desperately need it. If we could live without the money, I would. There just isn't any way unless we live off of assistance, which I am too proud to do. However, with me feeling like my sanity is in question, I wonder if I might get declared crazy & get that check any way.
Autie has been especially trying for the last two months or so. Her legs are getting tight. She is rotating in more. I am sad cause we are at the age where they told us she "wouldn't be able to be picked out of a crowd". WRONG! We are still dealing with all of this. Her wheelchair should be in in the next few weeks. DH is adamant about not using it. I had to carry her for several city blocks the other day & messed up my back. She is too big, too heavy & too stiff for me to carry around all the time now. She refuses to ride in her pushchair (aka stroller per her), so I get stuck carrying her.
I wish I could come to the place of total acceptance and stay there. It seems that any little thing in life can push me down when I least expect it. Evals came in along with the time of year when our first lost LB should have been born and the crap at work. BOOM! One step forward, two steps back. I envy so many of you here in bloggy land who are able to post so eloquently & deal with their child's disabilities with such grace. I have none. I am a bull in a China shop that can't seem to get it under control.
I feel myself sinking back into that black hole. I don't want to go back there. It is the holidays, I have so much to do. I am forcing myself to go through the steps, but I feel void of emotion. There are some good things happening around here, it just feels hard to celebrate when you are fighting. I just don't want to be in this life right now. I want to run away. I can't, but want to desperately.
I haven't posted in several weeks. I make attempts to sit down & blog, but nothing comes. I have lots to blog about, but can't make my finger move over the keys to bring out the words.
What fight am I fighting, but not winning?
Yep, those three nasty enemies of mine are trying to take over again. Depression, anxiety & insomnia.
Now, most of my personal issues are job related. My work has been super hectic. We have a lot of BS coming from management as well. There is just no time or place to decompress there. We are literally being trusted to manage people's life support, yet we aren't allowed to manage our own breaks at the moment. I have worked as a professional snot sucker for more than 15 years (makes me sound old!!!). I have never been treated so child-like in my career and I find it to be degrading. I came closerthanthis to quitting the other day, but I can't. I am stuck.
I need the FMLA for MM. If I go somewhere else, I will not have that for a year. She can't afford to be out of therapy that long. I need the insurance. Although I pay out the nose, I do have pretty decent insurance. Her health (and mine) desperately need it. If we could live without the money, I would. There just isn't any way unless we live off of assistance, which I am too proud to do. However, with me feeling like my sanity is in question, I wonder if I might get declared crazy & get that check any way.
Autie has been especially trying for the last two months or so. Her legs are getting tight. She is rotating in more. I am sad cause we are at the age where they told us she "wouldn't be able to be picked out of a crowd". WRONG! We are still dealing with all of this. Her wheelchair should be in in the next few weeks. DH is adamant about not using it. I had to carry her for several city blocks the other day & messed up my back. She is too big, too heavy & too stiff for me to carry around all the time now. She refuses to ride in her pushchair (aka stroller per her), so I get stuck carrying her.
I wish I could come to the place of total acceptance and stay there. It seems that any little thing in life can push me down when I least expect it. Evals came in along with the time of year when our first lost LB should have been born and the crap at work. BOOM! One step forward, two steps back. I envy so many of you here in bloggy land who are able to post so eloquently & deal with their child's disabilities with such grace. I have none. I am a bull in a China shop that can't seem to get it under control.
I feel myself sinking back into that black hole. I don't want to go back there. It is the holidays, I have so much to do. I am forcing myself to go through the steps, but I feel void of emotion. There are some good things happening around here, it just feels hard to celebrate when you are fighting. I just don't want to be in this life right now. I want to run away. I can't, but want to desperately.
Wednesday, October 14, 2009
In Typical M Family Style
As you know, whenever I take time off, something happens.
We are not on our way to the buckeye state right now. MM was sent to school. Why are we not on the road? Nana is sick. Yep. Nana, who NEVER gets sick, has a bug. I don't know if it is HoNo, but she is definitely sick. Fever, achy, vomiting. Blah! I am over here nursing her right now & willing her to get better.
I reeeeeeeeeeaaaaaaaaaaaaaaaaaalllllllllllllllllllllllllllllllllllllllllly want to go see my sister & grandma. I just don't think I can handle MM alone on a road trip. I don't know how she would do. She gets easily stressed out by my pure boy nephew who bounces around with endless energy. She would be stressed from a change in scenery. She would be stressed from seeing people she hasn't seen in years. I would have no one to lean on to help when my patience are thin. My sister would try to help, but MM doesn't know her that well.
I am afraid of being alone with my child away from home.
That is such a sad statement.
Thanks for nothing Autism.
We are not on our way to the buckeye state right now. MM was sent to school. Why are we not on the road? Nana is sick. Yep. Nana, who NEVER gets sick, has a bug. I don't know if it is HoNo, but she is definitely sick. Fever, achy, vomiting. Blah! I am over here nursing her right now & willing her to get better.
I reeeeeeeeeeaaaaaaaaaaaaaaaaaalllllllllllllllllllllllllllllllllllllllllly want to go see my sister & grandma. I just don't think I can handle MM alone on a road trip. I don't know how she would do. She gets easily stressed out by my pure boy nephew who bounces around with endless energy. She would be stressed from a change in scenery. She would be stressed from seeing people she hasn't seen in years. I would have no one to lean on to help when my patience are thin. My sister would try to help, but MM doesn't know her that well.
I am afraid of being alone with my child away from home.
That is such a sad statement.
Thanks for nothing Autism.
Saturday, August 15, 2009
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$$ answers rather than being kind.
Some days I just can't. I think it might be one of those days. I am fighting the funk about this. I just want to climb in bed with the covers over my head & have a good cry. It makes me sad that we can't just load up & go to a birthday party. I don't know if I want to see all the NT children (neuro typical to all of my new followers) running around, care free, no problems.
Something so simple for most and not so for us.
I just don't feel like being the poster child for autism today. I am not in the mood to answer questions, ignore the stares, work on calming her & just be stressed the whole party. It is not fun for me. I think I would be resisting the urge to give out my smart a$$ 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.
Monday, August 10, 2009
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?
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?
Thursday, July 23, 2009
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.
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!
Saturday, June 20, 2009
Weekend Survival Mode
As I said before, I am really tired. It is the weekend that I am off. Lately, on the weekends I am off, I feel like I am in survival mode. I just try to get by with my sanity intact. MM being out of school is really NOT a good thing. I have tried my best, come up with (what I thought was) a pretty good schedule for her, but I have failed. She stims & melts down so much that I want to stab myself in the eye with a pen. Not really, well the stabbing eye part. This is the first time in years that she has not had an ESY. It is not working for her or us. I am so worn down with patience & my nerves are shot. I really need a break from everything- work, her, my dh, my life.
I want a vacation so bad. Sadly, I want one all by my selfish self. I hear, see & read about everyone having wonderful vacations with their families. That just doesn't happen here. MM can't hates going places. It becomes a lot of work to calm her. DH gets easily frustrated with us, I get really angry with him. (He too is hard to travel & vacation with. He doesn't like to drive long distances & doesn't like to fly- WTH???? Doesn't leave many options for us) I feel trapped here. I feel like I am a horrible mother for wanting alone time. I need to recharge my batteries. I am like a car with a dead battery that hasn't been replaced. I am constantly having to be "jumped" every time I need to do anything. Although, one of these times, I am not going to start.
This is not what I envisioned when I dreamed of having a family. I am so bummed right now.
That is all.
I want a vacation so bad. Sadly, I want one all by my selfish self. I hear, see & read about everyone having wonderful vacations with their families. That just doesn't happen here. MM can't hates going places. It becomes a lot of work to calm her. DH gets easily frustrated with us, I get really angry with him. (He too is hard to travel & vacation with. He doesn't like to drive long distances & doesn't like to fly- WTH???? Doesn't leave many options for us) I feel trapped here. I feel like I am a horrible mother for wanting alone time. I need to recharge my batteries. I am like a car with a dead battery that hasn't been replaced. I am constantly having to be "jumped" every time I need to do anything. Although, one of these times, I am not going to start.
This is not what I envisioned when I dreamed of having a family. I am so bummed right now.
That is all.
Thursday, May 28, 2009
Keep on Keeping On
She is continuing to do well & amaze. She transitioned back to her MDO (mother's day out) program easily. There were 2 girls there from last year that she remembered. She has the same teacher as well. They were amazed at how much she has grown & changed. I know I complained alot, but Ms. X really did do an overall great job in helping MM.
We finally got casted for new DAFOs yesterday. We are going to try a shorter one & see how it goes. I am excited & nervous at the same time. We also will (finally) be getting AFO socks! Woohoo! The ones with the big toe seperator. She has so much eczema from the DAFOs & I have tried all kinds of socks. Hopefully, the insurance will pay for them. If not, I will. We have to try.
Speaking of insurance, they are driving me crazy! They keep calling me about my hospitalization, wanting details. They are also driving me nuts cause we have had all of MMs appointments come up at once. As you all know, insurance is a pain! I am thankful I have it, thankful mine is pretty good, but boy is it work!
I've still got to get her some new glasses. I am not sure how I want to go about it. I might try the Zen.ni site. Or I just might go to Wal.marx, although I am trying to stay out of there.
My mom & I were talking about how she has been "here" & exploded the last few weeks. We think it is due to her poison whatever exposure. It has obviously sent her immune system into overdrive. Just like when she gets a fever & clears, this seems to be going on. We were joking saying we are going to keep her rashed up from now on. I so wish they could figure out what makes her clear with fever, etc. It would be nice, huh? In the mean time, I am just enjoying her. She is such a sweet kid.
We finally got casted for new DAFOs yesterday. We are going to try a shorter one & see how it goes. I am excited & nervous at the same time. We also will (finally) be getting AFO socks! Woohoo! The ones with the big toe seperator. She has so much eczema from the DAFOs & I have tried all kinds of socks. Hopefully, the insurance will pay for them. If not, I will. We have to try.
Speaking of insurance, they are driving me crazy! They keep calling me about my hospitalization, wanting details. They are also driving me nuts cause we have had all of MMs appointments come up at once. As you all know, insurance is a pain! I am thankful I have it, thankful mine is pretty good, but boy is it work!
I've still got to get her some new glasses. I am not sure how I want to go about it. I might try the Zen.ni site. Or I just might go to Wal.marx, although I am trying to stay out of there.
My mom & I were talking about how she has been "here" & exploded the last few weeks. We think it is due to her poison whatever exposure. It has obviously sent her immune system into overdrive. Just like when she gets a fever & clears, this seems to be going on. We were joking saying we are going to keep her rashed up from now on. I so wish they could figure out what makes her clear with fever, etc. It would be nice, huh? In the mean time, I am just enjoying her. She is such a sweet kid.
Saturday, May 23, 2009
And it Keeps Going!
More bragging here!
We went to the eye doctor yesterday. She did AMAZING! She jumped up in the chair, told them she wanted to see the letters, not the shapes. She didn't even need me to sit in the chair with her. The only time she got upset was when they had to dilate her eyes. That wasn't a big deal. The problem was the nurse wouldn't listen to me about not restraining her. MM HATES to be restrained. If you tell her, prepare her & let her know what is coming, all I have to do is gently hold her hands. Once we got through that, it was only a 10 minute meltdown. She then went back & saw the doctor. He was pleased. Eyes are just a little worse, but he is hoping we will plateau & not need surgery. I will continue to do glasses as long as it works. Not patching for now either. Just drops every now & then for when she starts looking out the bottoms of her glasses. We will dilate for 3 days & see if it stops. If not, then we will have to do patching again.
Then we went to the dentist. We went to the dentist in town who specializes in SN. We were all prepared to go visit & make the appointment for sedation since she is so orally defensive. Well, Miss Thing went right back. They wanted to do a panorex of her teeth. I explained to her about the xray & how to do it. She stood & bit down & did great. We then went back, she jumped up in the dental chair. She hit it off right away with the hygienist. She asked what her name was, what tools she had, etc. The hygienist took the one pointer & MM said "You not gonna give MM a shot are you?". Hygienist said "No, I use this to point & count your teeth". MM opened up & let them count her teeth! Then the hygienist let her touch the brush, etc. MM LET her clean her teeth & paint on the fluoride treatment! The dentist then came in who is a very large, kind voiced man. She shook his hand, asked him to count her teeth. She only gagged a few times. Her teeth look great. We have taken immaculate care of them (his words). No cavities, but her mouth is way, way too small for all those teeth. He said unless she does some serious growing, we are looking at some major orthodontics. Even that news couldn't spoil my mood.
She got her first phone call yesterday from a friend at school. This is the conversation:
Me: Hello?
G: Is this MM's Mommy?
Me: Yes it is.
G: This is G. Can I please talk to MM?
Me: Sure. MM the phone is for you.
MM: Hello? Who is this?
G: It's me, G. What are you doing?
MM: I hanging out with my cousin. We playing.
G: I'm going to give your mommy my phone number so we can play this summer, okay?
MM: Sure. We can play. Mommy its for you, it G.
Me: Okay, G. I've got your phone number from the caller ID.
G: Okay, I will call in a couple days so I can play with her. I live in Knoxville.
Me: Okay, bye-bye.
Too cute! This is the little girl that was MM's peer buddy. We gave her our phone number for summer play date. I was excited she called right away. This little girl also cried cause MM wouldn't hug her the last day of school. She just doesn't hug too often. I got her to give high-fives to her though. MM loves to give high-fives as her way of hugging.
She has really had the best week ever!
How do you top that off?
Nana bought her a DS for her hand/eye coordination & cause she got all Es (which means excellent) on her report card. She picked the My Baby Girl game. She likes to be the mommy. And guess what? She has already figured out how to work the game! :-)
***There was only one downer at the dentist. There were a lot of people there who were foreign. A couple of women were speaking in an unrecognizable language & pointing & staring at MM's braces. I just wanted to scream at them That is RUDE in any language! You can talk all you want, just don't point & stare. I would have thought there would have been more SNK there, but not when we went. It was all typical kids. Note to self, get first appointment of day from now on.***
We went to the eye doctor yesterday. She did AMAZING! She jumped up in the chair, told them she wanted to see the letters, not the shapes. She didn't even need me to sit in the chair with her. The only time she got upset was when they had to dilate her eyes. That wasn't a big deal. The problem was the nurse wouldn't listen to me about not restraining her. MM HATES to be restrained. If you tell her, prepare her & let her know what is coming, all I have to do is gently hold her hands. Once we got through that, it was only a 10 minute meltdown. She then went back & saw the doctor. He was pleased. Eyes are just a little worse, but he is hoping we will plateau & not need surgery. I will continue to do glasses as long as it works. Not patching for now either. Just drops every now & then for when she starts looking out the bottoms of her glasses. We will dilate for 3 days & see if it stops. If not, then we will have to do patching again.
Then we went to the dentist. We went to the dentist in town who specializes in SN. We were all prepared to go visit & make the appointment for sedation since she is so orally defensive. Well, Miss Thing went right back. They wanted to do a panorex of her teeth. I explained to her about the xray & how to do it. She stood & bit down & did great. We then went back, she jumped up in the dental chair. She hit it off right away with the hygienist. She asked what her name was, what tools she had, etc. The hygienist took the one pointer & MM said "You not gonna give MM a shot are you?". Hygienist said "No, I use this to point & count your teeth". MM opened up & let them count her teeth! Then the hygienist let her touch the brush, etc. MM LET her clean her teeth & paint on the fluoride treatment! The dentist then came in who is a very large, kind voiced man. She shook his hand, asked him to count her teeth. She only gagged a few times. Her teeth look great. We have taken immaculate care of them (his words). No cavities, but her mouth is way, way too small for all those teeth. He said unless she does some serious growing, we are looking at some major orthodontics. Even that news couldn't spoil my mood.
She got her first phone call yesterday from a friend at school. This is the conversation:
Me: Hello?
G: Is this MM's Mommy?
Me: Yes it is.
G: This is G. Can I please talk to MM?
Me: Sure. MM the phone is for you.
MM: Hello? Who is this?
G: It's me, G. What are you doing?
MM: I hanging out with my cousin. We playing.
G: I'm going to give your mommy my phone number so we can play this summer, okay?
MM: Sure. We can play. Mommy its for you, it G.
Me: Okay, G. I've got your phone number from the caller ID.
G: Okay, I will call in a couple days so I can play with her. I live in Knoxville.
Me: Okay, bye-bye.
Too cute! This is the little girl that was MM's peer buddy. We gave her our phone number for summer play date. I was excited she called right away. This little girl also cried cause MM wouldn't hug her the last day of school. She just doesn't hug too often. I got her to give high-fives to her though. MM loves to give high-fives as her way of hugging.
She has really had the best week ever!
How do you top that off?
Nana bought her a DS for her hand/eye coordination & cause she got all Es (which means excellent) on her report card. She picked the My Baby Girl game. She likes to be the mommy. And guess what? She has already figured out how to work the game! :-)
***There was only one downer at the dentist. There were a lot of people there who were foreign. A couple of women were speaking in an unrecognizable language & pointing & staring at MM's braces. I just wanted to scream at them That is RUDE in any language! You can talk all you want, just don't point & stare. I would have thought there would have been more SNK there, but not when we went. It was all typical kids. Note to self, get first appointment of day from now on.***
Thursday, May 21, 2009
Best Days EVER!
Well, the title might be an exaggeration, but no lie. Today was one of the BEST DAYS EVER in my life since I had MM.
Why?
Please hang with me while I brag.
My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.
She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:
HEY WORLD! SHE DID IT! WE DID IT!
She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.
This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.
Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.
I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.
While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.
She has told me a million times today how much she loves me & daddy & nana & pop-pop.
I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.
It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.
With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )
"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest
I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest
In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
MM, you have made it!
Why?
Please hang with me while I brag.
My amazing daughter. The one who was born premature. The one who has cerebral palsy. The one who they said would never walk. The one who they then said would never walk unassisted. The one who they diagnosed as having autism spectrum disorder. The one who wouldn't be able to be mainstreamed until third grade. Yeah, that girl.
She completed & graduated from regular ed kindergarten. Not only did she pass, she superseded all of their expectations. She did it! I just want to jump up & down & scream with my fists in the air:
HEY WORLD! SHE DID IT! WE DID IT!
She also got an award at the assembly for being the Super Site Word reader of all of kindergarten. She was very proud of herself. Her daddy went & watched her get the award- mommy had to work. A couple of her classmates got citizen awards for always going the extra mile & helping her. She loves those two girls & tells me so along with that they are her friends. They love her. The school has instilled such a sense of community in those children & really take care of MM, encourage MM and make sure she does what they are doing & gets where they are going. Her teacher made an amazing video of the year that she gave a DVD to each student. I bawled my eyes out watching it. My baby is a big girl now. She is going on to regular ed first grade with all of her supports.
This day has confirmed our choices. We made the right one for her & us to mainstream her from the beginning. The children are used to her & know how she is & they love her just the same.
Her second tooth fell out yesterday (finally) after the permanent one has been in, so the tooth fairy came last night. She only left a dollar this time. I am glad cause we go to the dentist for the first time tomorrow. We also go to the eye specialist in the morning.
I am feeling better. I worked all day yesterday & part of today. I leave early on Thursdays to take her to therapy. She had a great OT session. She cut, glued, colored & wrote her name very legibly. She interacted & made astonishing eye contact. She had water therapy. She moved her arms & her legs in a true swimming motion for 5 strokes. First time ever! Her therapist was jumping up & down, cheering. Of course, this scared MM and she didn't do it again.
While I was in the hospital for the week, MM & Daddy came up with a wonderful surprise. Again the kid with all of the above mentioned stuff has learned to pedal a regular bike with training wheels. Wooohoooooo! Watched her do it for the first time Tuesday. Yes, I was bawling then.
She has told me a million times today how much she loves me & daddy & nana & pop-pop.
I got a great evaluation at work which means a great raise. I got a guardian angel award at work for giving good care to someone. It is a very special recognition to get & not very many are given out.
It has been a good week. I know this is disjointed, but I just had to share my great news. This is one of the best days that I will never forget. Honestly, ranks right up there in my top 5 of my life like the day she was born, getting married, etc.
With this, I will leave the lyrics to the song that the teacher used on the DVD. I had never heard it before & I LOVE it. I am going to download it (even if it is by that kook R.K.E.L.L.Y. )
"The World's Greatest"
I am a mountain
I am a tall tree
Oh, I am a swift wind
Sweepin' the country
I am a river
Down in the valley
Oh, I am a vision
And I can see clearly
If anybody asks you who I am
Just stand up tall look 'em in the Face and say
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it mmm
I'm the worlds greatest
I am a giant
I am an eagle
I am a lion
Down in the jungle
I am a marchin' band
I am the people
I am a helpin' hand
And I am a hero
If anybody asks u who I am
Just stand up tall look 'em in the Face and say
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
I made it
I'm the worlds greatest
And I'm that little bit of hope
When my backs against the ropes
I can feel it
I'm the worlds greatest
In the ring of life I'll reign love
(I will reign)
And the world will notice a king
(Oh Yeah)
When all is darkest, I'll shine a light
(Shine a light)
And use a success you'll find in me
(Me)
[Chorus]
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
[*]It's the greatest
Can you feel it
It's the greatest
Can you feel it[Repeat * while:]
I saw the light
At the end of a tunnel
Believe in the pot of gold
At the end of the rainbow
And faith was right there
To pull me through, yeah
Used to be locked doors
Now I can just walk on through
Hey, uh, hey, hey, hey
It's the greatest
I'm that star up in the sky
I'm that star up in the sky
I'm that mountain peak up high
Hey, I made it
I'm the world's greatest
And I'm that little bit of hope
When my back's against the ropes
I can feel it
I'm the world's greatest
MM, you have made it!
Saturday, May 16, 2009
Sweetie
This morning when I came downstairs:
MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"
This was repeated about 20 times already this morning.
That is the best medicine/healing power of all.
It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.
One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.
MM: "Mom, I am so glad you are still here"
Me: "Me too"
MM: "I am so glad to see you. Are you better yet? I love you Mommy. Do you love me?"
Me: "Of course I love you & yes, I am getting better"
This was repeated about 20 times already this morning.
That is the best medicine/healing power of all.
It is so hard for her to have me disappear. She wanted to go to Nana's yesterday, but cried cause she kept saying "Mommy won't be here" implying I was going away again. I hope this anxiety resides for her soon & she realizes it was just a temporary leave. Thanks for all the well wishes.
One more thing in regards to MM. Her poor little legs need a desperate work out. She hasn't been to therapy in two weeks cause I have been in the hospital. Her lower legs almost look atrophied. Her daddy tries hard, but doesn't do all the "extras" like I do. Her feet are so down & inward and keep having spasms. This weekend is going to be lower leg boot camp for her. She is not going to like it. We were also supposed to go for a new casting to get new DAFOs. Hopefully they can get us in this week. She needs new ones quickly.
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