I've gotten to the point in life...
Where some thing that used to be important to me, aren't that important now.
Okay now before I get hate comments on here let me clarify.
I care a lot about a couple of causes. The March of Dimes, and anything having to do with Cancer Research (esp. Kids Cancer).
This morning (Thursday) I was reading my facebook feed, like I normally do, I saw something that alarmed me.
A friend of our family posted that she was moving to Costa Rica for 12 months. I was like, are we still watching their kids tomorrow night? Are they all leaving...etc...
The truth was... It was one of those cryptic messages that is supposed to raise awareness for cancer; although I have no idea how anyone can figure out the formula to how they got the words. The first words of the email is that men are to be excluded from this....
This is always trouble for one by excluding anyone .Two... it doesn't raise awareness or money for a specific cause.outright (unless you ask someone who had the formula)
Like a friend of mine said. "you might as well flush a toilet"- She made a video I will post at the bottom...
For the record...She has her own blog, and I like it. this was on hers. This is HERS.
If you are into raising money for a cause:
Go find the Cause and support it...(click on the highlighted and it will take you there)
American Cancer Society- Relay for life- Personal because of: Andrew's Grandma(pancreatic cancer 2001)
Tracy(2006) Larry(2009) Victoria-Age 6 (2009) and Fred(2011)
Lukemia & Lymphoma Society-(for Christy)
CureSearch-Children's Cancer Research
March for Babies-March of Dimes- Prematurity and Birth Defect.-This one is personal and in a few days like I have for the last two years I am writing my blog about our Nicu journey and how we were helped. I am writing as a part of BloggersUnite for Prematurity awareness day.
Be very blessed and be a blessing to someone else!
Thursday, November 10, 2011
Friday, October 21, 2011
What would you SAY...
Okay now that I've got a song going through your head...Or at least now there's one in mine.
It got me thinking.
October is Pregnancy and infancy loss awareness month. Most people are aware of October also being Breast Cancer awareness month.
In fact I've seen it on the news and even say a horrible NFL game where I needed sunglasses because the pink was day-glow.(yeah I know I just totally bunny trailed but now that you're aware I will continue)
Okay now my question. What would you really say so someone who just experienced a loss.
I'm going to list a few pointers I use. This totally excludes pregnancy loss because I've experienced this one twice.
1. Try just being honest and say you're sorry and how you don't know what to say.
This is so much better than saying something you don't really know or will come across the wrong way.
2. Place yourself in the other person's shoes...and walk a few miles in them.
What would you want someone to say or do for you.
3. If you feel like you want or need to do something for them in this time of trauma/loss, be very specific.
If you say something like, If you ever need anything please let me know. Okay one problem, we've all heard this and it's too open ended.
Imagine going through a time in which your whole personal universe falls apart. It's overwhelming. nothing makes sense. This trauma wasn't supposed to happen., now you have to deal with not only this loss but everybody else.
I remember certain things that really helped me when my first son Jonathan was born and the NICU stay that followed. One of the most meaningful things someone did for me was...Mow my lawn. or Bring me food.
This friend of ours actually asked if he could come over and mow our grass.
4. Don't avoid someone because you don't know what to say. Just say something. If this person lost a loved one and you have personal memories of them...talk about this. Trust me it helps when other people remember a friend. writing down the memories is even better.
Silence can sometimes be deafening. It's okay to cry about it.
Pregnancy loss(this may trigger-those who've had this happen)
I've experienced two miscarriages. The first one was in January 2005 and the second was August 31,2007(labor day Friday). Both of these pregnancies were very wanted and the babies that were in my womb from conception were both precious and loved.
Having had just gone through several years of infertility and waiting, It was truly the most joyful thing to find out that finally we were pregnant. A few weeks later and after an ultrasound we discover our babies had died.(both times)
I'll spare you all the details only to say. It stinks. I'm sad and there is such a stigma on this that I cannot talk about my loved ones.
I've heard even really great friends tell me the most crazy and hurtful things that meant well.
"Maybe it just wasn't meant to be" or "Don't be sad and don't mourn this baby".
I even had a pastor friend that I respected tell me that I had an abortion. I had no respect for this person later by the way, and the fact of the matter was that my baby had passed away at 7 weeks and a month had passed. My body never got the memo to let go. I saw that ultrasound with no heart beating..and continued to see that horrible yet beautiful picture every time I closed by eyes for a while.
This person treated me as though I had butchered my baby. Incomprehensible if I catch someone saying it to one of my friends or me, I will be having words with you.
The morning we said goodbye a really well known friend of mine called me and gave me some really terrific words of comfort(from experience)
My baby was in heaven with Jesus and that I would be able to see him when it was my time, and that no matter what I was and always would be his mom.
I would through this experience gain some things that were unexpected. I gained a new level of compassion for people experiencing this. Maybe it's empathy..I really don't know what to call it.
I also gained some of the most wonderful,caring and loving friends I never thought I would ever meet. People from all walks of life, beliefs etc.
One of the best things I ever heard someone say was "i'm So sorry for your loss" I'm here with you and for you. If you need to cry go ahead. Screaming is okay too."
Okay now that I have tears in my eyes...
Pregnancy loss is more about mourning the future... What would he/she have looked like etc.
If you've never experienced anything like that: Good for you. I pray and hope you never do.
Be honest and tell the person you don't know what to say and leave it at that.
Let the mom or dad take the lead in whether or not they want to do something.
Case in point (and I hope this friend doesn't get offended because I love her and her family HUGS and Kisses to C)
When I miscarried Samuel at what should have been 11 weeks...She was I think 34 weeks pregnant.
We'd gone through most of her pregnancy together as really close friends. We talked a lot. She was in fact the first person I called when I got this horrible news.
The timing on this loss was so Horrible not only for my family, but for her as well. She was in a period of transition that was anticipated to be JOYful. The whole thing was just awkward and after the initial loss and the memorial we had..we kind of backed off... Because our time of LOSS was incredibly upsetting...she didn't know how to feel or say. Well of course she went on and had her baby. I had asked her to call me and talk to me through that because I demanded she did. I told her if she kept this from me I'd be even more upset. She shared the whole thing with me and even called me right after she delivered her own baby in the hospital by herself (long story short, her delivery was super fast that no doctors or nurses were there to catch the baby. The baby came out and landed on the bed).
We drifted apart and only on occasion would call each other. I felt I lost a friend. She avoided me like the plague for a while. We did reconcile and God does wonderful things through that. God only knows the reasons why things happen. It's impossible for me to see anything past my circumstances sometimes.. We'll be friends always although it will be different.
Although I didn't die, some people expected me to stay away from the activities that brought me joy and light to my dark valley... why do you expect me to crawl in a freaking hole and never come out...
Yes I have those days where I want to stay in bed or go sit on my porch. I still think about those babies. A LOT.
It's a MYTH that just because you have other children, that losing a baby by miscarriage is any less painful.
In fact it's quite the opposite. Every year on someone's birthday the question goes through my head about what one of our babies would have looked like. Having a child that's living sometimes does trigger that response,although I have learned to deal with the pain of that.
This same truth applies also to infertility.
Someday my children will be told about their siblings that are in heaven waiting on us all. We are waiting until they have more understanding of life and death to tell them this.
Until then Every October 15th we light candles to remember those babies. We also light candles Jan 28th... Samuel will be 7 years this next January.
Until our children can grasp the concept of life and death, we are waiting to tell them about our other babies.
Some of this I have to give credit where credit is due. I would not be where I am today without the friendship of some ladies I met on the internet. I also have met others with these experiences locally and the thread among ourselves is made common by love and loss.
I ultimately have to give the honor and credit to God(my creator) and also someone who I married nearly 14 years ago.
Having said this...I've been greatly comforted, and find myself offering the same support that was given to me.
Until next time go and be blessed (to be a blessing)
It got me thinking.
October is Pregnancy and infancy loss awareness month. Most people are aware of October also being Breast Cancer awareness month.
In fact I've seen it on the news and even say a horrible NFL game where I needed sunglasses because the pink was day-glow.(yeah I know I just totally bunny trailed but now that you're aware I will continue)
Okay now my question. What would you really say so someone who just experienced a loss.
I'm going to list a few pointers I use. This totally excludes pregnancy loss because I've experienced this one twice.
1. Try just being honest and say you're sorry and how you don't know what to say.
This is so much better than saying something you don't really know or will come across the wrong way.
2. Place yourself in the other person's shoes...and walk a few miles in them.
What would you want someone to say or do for you.
3. If you feel like you want or need to do something for them in this time of trauma/loss, be very specific.
If you say something like, If you ever need anything please let me know. Okay one problem, we've all heard this and it's too open ended.
Imagine going through a time in which your whole personal universe falls apart. It's overwhelming. nothing makes sense. This trauma wasn't supposed to happen., now you have to deal with not only this loss but everybody else.
I remember certain things that really helped me when my first son Jonathan was born and the NICU stay that followed. One of the most meaningful things someone did for me was...Mow my lawn. or Bring me food.
This friend of ours actually asked if he could come over and mow our grass.
4. Don't avoid someone because you don't know what to say. Just say something. If this person lost a loved one and you have personal memories of them...talk about this. Trust me it helps when other people remember a friend. writing down the memories is even better.
Silence can sometimes be deafening. It's okay to cry about it.
Pregnancy loss(this may trigger-those who've had this happen)
I've experienced two miscarriages. The first one was in January 2005 and the second was August 31,2007(labor day Friday). Both of these pregnancies were very wanted and the babies that were in my womb from conception were both precious and loved.
Having had just gone through several years of infertility and waiting, It was truly the most joyful thing to find out that finally we were pregnant. A few weeks later and after an ultrasound we discover our babies had died.(both times)
I'll spare you all the details only to say. It stinks. I'm sad and there is such a stigma on this that I cannot talk about my loved ones.
I've heard even really great friends tell me the most crazy and hurtful things that meant well.
"Maybe it just wasn't meant to be" or "Don't be sad and don't mourn this baby".
I even had a pastor friend that I respected tell me that I had an abortion. I had no respect for this person later by the way, and the fact of the matter was that my baby had passed away at 7 weeks and a month had passed. My body never got the memo to let go. I saw that ultrasound with no heart beating..and continued to see that horrible yet beautiful picture every time I closed by eyes for a while.
This person treated me as though I had butchered my baby. Incomprehensible if I catch someone saying it to one of my friends or me, I will be having words with you.
The morning we said goodbye a really well known friend of mine called me and gave me some really terrific words of comfort(from experience)
My baby was in heaven with Jesus and that I would be able to see him when it was my time, and that no matter what I was and always would be his mom.
I would through this experience gain some things that were unexpected. I gained a new level of compassion for people experiencing this. Maybe it's empathy..I really don't know what to call it.
I also gained some of the most wonderful,caring and loving friends I never thought I would ever meet. People from all walks of life, beliefs etc.
One of the best things I ever heard someone say was "i'm So sorry for your loss" I'm here with you and for you. If you need to cry go ahead. Screaming is okay too."
Okay now that I have tears in my eyes...
Pregnancy loss is more about mourning the future... What would he/she have looked like etc.
If you've never experienced anything like that: Good for you. I pray and hope you never do.
Be honest and tell the person you don't know what to say and leave it at that.
Let the mom or dad take the lead in whether or not they want to do something.
Case in point (and I hope this friend doesn't get offended because I love her and her family HUGS and Kisses to C)
When I miscarried Samuel at what should have been 11 weeks...She was I think 34 weeks pregnant.
We'd gone through most of her pregnancy together as really close friends. We talked a lot. She was in fact the first person I called when I got this horrible news.
The timing on this loss was so Horrible not only for my family, but for her as well. She was in a period of transition that was anticipated to be JOYful. The whole thing was just awkward and after the initial loss and the memorial we had..we kind of backed off... Because our time of LOSS was incredibly upsetting...she didn't know how to feel or say. Well of course she went on and had her baby. I had asked her to call me and talk to me through that because I demanded she did. I told her if she kept this from me I'd be even more upset. She shared the whole thing with me and even called me right after she delivered her own baby in the hospital by herself (long story short, her delivery was super fast that no doctors or nurses were there to catch the baby. The baby came out and landed on the bed).
We drifted apart and only on occasion would call each other. I felt I lost a friend. She avoided me like the plague for a while. We did reconcile and God does wonderful things through that. God only knows the reasons why things happen. It's impossible for me to see anything past my circumstances sometimes.. We'll be friends always although it will be different.
Although I didn't die, some people expected me to stay away from the activities that brought me joy and light to my dark valley... why do you expect me to crawl in a freaking hole and never come out...
Yes I have those days where I want to stay in bed or go sit on my porch. I still think about those babies. A LOT.
It's a MYTH that just because you have other children, that losing a baby by miscarriage is any less painful.
In fact it's quite the opposite. Every year on someone's birthday the question goes through my head about what one of our babies would have looked like. Having a child that's living sometimes does trigger that response,although I have learned to deal with the pain of that.
This same truth applies also to infertility.
Someday my children will be told about their siblings that are in heaven waiting on us all. We are waiting until they have more understanding of life and death to tell them this.
Until then Every October 15th we light candles to remember those babies. We also light candles Jan 28th... Samuel will be 7 years this next January.
Until our children can grasp the concept of life and death, we are waiting to tell them about our other babies.
Some of this I have to give credit where credit is due. I would not be where I am today without the friendship of some ladies I met on the internet. I also have met others with these experiences locally and the thread among ourselves is made common by love and loss.
I ultimately have to give the honor and credit to God(my creator) and also someone who I married nearly 14 years ago.
Having said this...I've been greatly comforted, and find myself offering the same support that was given to me.
Until next time go and be blessed (to be a blessing)
Wednesday, October 5, 2011
Trippin out and Parent teacher conference day
First our Trip-
We rode a train called the TRE all the way into Fort Worth
Jonathan and Daniel LOVE trains. that and Airplanes and Airports... We see lots of those living by the Dallas/Fort Worth Int'l Airport within minutes of our house. That and Bass Pro (with the giant fish in their tank)
skyline view just before we reached the end of the line in Fort Worth
They have a lot of stars out here Although we can't yet figure out how this is the "Lone Star" state seeing so many.
Sarah came too and was attached to me in a carrier. Daddy held her while I took some pictures while we rode on the top level on the train
Parent Teacher Conference Day:
Daniel: 3 weeks into school and the teacher has already figured out Daniel is quite the intelligent little boy although he has speech issues.
She has already figured out what motivates him as well, and has begun to help him work on getting him to stop with the chewing/mouth issues.
He really has surprised the staff at his school of how interactive he is and how eager he is to learn.
He had homework and I was able to help out with my awesome Google skills.
Jonathan: Although there aren't letter Grades in Kindergarten. He's doing fairly well so far. although his reading and writing need help he is getting better with the ordering numbers... He's still a little bit lost with his alphabetical order. all I got to say is some of this he at least got honest from his Dad.
His teacher loves him so much.and she told us a story from when she was in class a week prior. She had been drawing a picture of what she did at home with her family. She drew a picture of her, her husband and a younger child gathered around a computer (her older one is off in college). When she asked her class of 5 year olds what she was doing: some said they were playing a game, some said it was a picture. a few said facebook. When the activity had ended and everyone's attention was somewhere else Jonathan goes up to Mrs. C. and says "Its called Skype-ing mrs. C." That was in fact what she was drawing. He was so excited.
(I never ever use full last names unless I have permission)
We answered her questions about our train trip to her as she only got a partial story.
Like I stated in the last post I do not have any issues with his teacher. She's just awesome. We like her and she is liking him. She communicates well, although returning an email saying she's looking into a matter would be great
We have been blessed to have 2 great teachers at 2 great schools. Daniel has had some behavior challenges that caused him to have a sad face in his binder... but Jonathan has had nothing but green smiles in his. He likes having the green smiley and takes pride in it.
Be blessed.
Prayer request: Andrew is currently looking for another job (as per our plan when we moved out here-But was sped up by circumstances beyond his control). He has several interviews tomorrow. We'd appreciate God's favor and proper pay and benefits and time of day we need etc.. We'd also love for him to start soon.He's driving us all insane.
We found out through a personality test last night that is is one of his traits. We love him so much but he needs to be engaged in feeling useful for him to be happy.
Thursday, September 29, 2011
Individual Education Plan (ARD) Meeting...
Total pain in the rear.
About two weeks ago in Jonathan and Daniel's binder I got a note saying that there would not be school on the day of September 28th. I asked both teachers if it were even necessary to have these as we were either going to have a IEP or (ARD) meeting to discuss their progress and start getting them each the specific help they need. They said we would have to come to that too.
Since we had started the process of applying to the school for services about 2 or 3 weeks after we moved here...It took forever for the necessary folks to come back and do all their necessary assessments etc. 3 weeks until school started and we were just having the first meeting to discuss that we were going to keep everything in place until we had him evaluated by the staff at school. Meanwhile I've discovered something completely disturbing yet at the same time really pathetic.
While we were trying to get Jonathan and Daniel enrolled (and sadly this was more prominent with Jonathan)
I kept having these conversations with people that were speaking like they had a split personality. It was totally just both idiotic and political at the same time. There were good reasons for that although they didn't want to acknowledge that they have to follow the law. (so what I heard was: the law first and then their interpretation of it and what they wanted to do.)
Most of them did their evaluations and sent us copies of what they wrote. I say most in a broad term. a couple of the therapists either came on just as right before the meeting OR just didn't bother to write anything down as in the physical therapist...(who I will explain later)
In the district we now live in it was easier and way much faster to take Daniel in...and get him tested. We were waiting for a while for things to begin moving on his process, but happily once it started it went so fast. We had our meeting completed by week 3 of school and he started the next Monday.
Jonathan we had started him in the process at the same time and it took several extra weeks to get everyone to the meeting late last week.
The teacher we've had , so far has been a champion for Jonathan and has gone to bat for Jonathan several times already. She went to the principal several times in regards to the bully that he was encountering on the bus. The bully was dealt with after we visited his school the second time. She has dealt with our notes with our questions, and has called us to address our specific classroom questions.
I dare not fault her for the actions of the administration. Some things her hands have been tied on, and unfortunately the teacher(who has the most hand on the child) doesn't get even a 20% say. This should be weighted towards the teacher who has him in the classroom.
We get a call three (3) days before by both the Occupational therapist and the resource teacher who will be in on what Jonathan does during the year telling me what they assessed him for and what he needs. good information but the occupational therapist added that the physical therapist will not be doing anything with him as she sees no need for him being helped as he can do a lot already at school.
I was okay with her telling me she wouldn't be at the meeting(although in the end she was).
I was okay with the resource teacher taking the time to answer my questions.
I was NOT okay when the PT and the speech therapist backed out of the meeting.I told Andrew this and scratched my head
I wrote in Jonathan's binder communicator thing called a MOOSE. I also made it a hobby of mine to try to reach her and the evaluator. I know what our rights are, and I know it's within our rights to ask that they all be at this meeting.
Again I got a lot of double talk but I made my point that it was within our rights.
Not knowing that Andrew had been talking to the diagnostician and making the same point. The meeting was back on as they normally all try to excuse themselves from the meeting. Only this time they were all coming.
I had a dream a couple of weeks previous warning me of all this. They weren't going to give a lick about him and there was very little I could do about it. I mentioned this to Andrew and he shrugged it off.
I knew these people were going to play political games so I went online to an advocacy website and got some tips. I printed out a picture of Jonathan which was really great and really cute. The point of this was to remind everyone that we were there for Jonathan and not them. they still played games.
Well, everyone except the OT and the teacher. The low lite was when the PT said this: Oh he'll be okay you just need to get him into sports and the park to maintain his poor muscle tone.(Like that will help...we know NOTHING about physical therapy but apparently unless he's in a wheelchair they're refusing to help him.
Jonathan has been trying twice as hard as anyone else to do the same stuff and they are totally blind to this.He puts out more effort and he gets things done because he has no other choice.
They have modified his desk by velcro-ing a couple of phone books so make his more balanced and help him write.
He is being followed by the adaptive pe teacher who will see him only occasionally.
We were told they felt he needed outside therapy but didn't tell me how I am supposed to get this or how to pay for it. All they do is the educational part.
I'm really hoping something doesn't go horribly wrong for Jonathan and he does something like fall down the stairs(like he has in the recent past) or someone pushed him down on the playground. he already has come home with bruises and a big knot on his head. They will now have a problem since they know about his medical condition. He could easily really hurt himself doing things other kids don't even have to think about.
. I am going to try to have him excused and we are waiting on a referral for pt,OT and speech along with a developmental pediatrician. If I need to I won't hesitate to pull him out of school for it.. If you know of any educational advocates or attorneys specializing in special ed law in the DFW area, please let me know.Although we don't have a lot of money...if we need to we will spend some money for one and sue for legal fees.
We really are NOT into political anything when it comes to our kids so I really get a bit ticked off when stuff like this happens.
I would have posted something here but I was simply too mad and upset to write anything on this matter. I wanted fire to land on the PT for the stupid and inconsiderate things she said and how she just simply got up and walked out in the middle of the meeting. I had to forgive her, but that doesn't mean I won't be filing a complaint with the Education board. No one else should ever have to go through what we did.
None of this benefits Jonathan as far as going further.just to hold him at par. He can open doors,go up and down stairs and sit in his chair without help, but they won't help him.
The teacher tried to make several recommendations but she was only able to get half of what she suggested.
Like I said... the authority should be more weighted towards those with more direct contact with the student and the parents. The others could (I apologize for saying this) give a rat's ass about him.(sorry this is a figure of speech).
My faith in this school district is fuzzy. It's not to say we aren't coming across a great teacher here and there but as far as helping these kids...they FAIL EPIC Fail!
The dream was a warning and I am glad I had that dream so we would be prepared. I wasn't surprised to encounter these kind of people and that is great because I could have been totally blind to this and really had a mess on our hands.
Because this post went longer than I had anticipated...I will post an update with pictures and the Parent teacher conferences from yesterday ...sometime in this week.
Until then be blessed.
About two weeks ago in Jonathan and Daniel's binder I got a note saying that there would not be school on the day of September 28th. I asked both teachers if it were even necessary to have these as we were either going to have a IEP or (ARD) meeting to discuss their progress and start getting them each the specific help they need. They said we would have to come to that too.
Since we had started the process of applying to the school for services about 2 or 3 weeks after we moved here...It took forever for the necessary folks to come back and do all their necessary assessments etc. 3 weeks until school started and we were just having the first meeting to discuss that we were going to keep everything in place until we had him evaluated by the staff at school. Meanwhile I've discovered something completely disturbing yet at the same time really pathetic.
While we were trying to get Jonathan and Daniel enrolled (and sadly this was more prominent with Jonathan)
I kept having these conversations with people that were speaking like they had a split personality. It was totally just both idiotic and political at the same time. There were good reasons for that although they didn't want to acknowledge that they have to follow the law. (so what I heard was: the law first and then their interpretation of it and what they wanted to do.)
Most of them did their evaluations and sent us copies of what they wrote. I say most in a broad term. a couple of the therapists either came on just as right before the meeting OR just didn't bother to write anything down as in the physical therapist...(who I will explain later)
In the district we now live in it was easier and way much faster to take Daniel in...and get him tested. We were waiting for a while for things to begin moving on his process, but happily once it started it went so fast. We had our meeting completed by week 3 of school and he started the next Monday.
Jonathan we had started him in the process at the same time and it took several extra weeks to get everyone to the meeting late last week.
The teacher we've had , so far has been a champion for Jonathan and has gone to bat for Jonathan several times already. She went to the principal several times in regards to the bully that he was encountering on the bus. The bully was dealt with after we visited his school the second time. She has dealt with our notes with our questions, and has called us to address our specific classroom questions.
I dare not fault her for the actions of the administration. Some things her hands have been tied on, and unfortunately the teacher(who has the most hand on the child) doesn't get even a 20% say. This should be weighted towards the teacher who has him in the classroom.
We get a call three (3) days before by both the Occupational therapist and the resource teacher who will be in on what Jonathan does during the year telling me what they assessed him for and what he needs. good information but the occupational therapist added that the physical therapist will not be doing anything with him as she sees no need for him being helped as he can do a lot already at school.
I was okay with her telling me she wouldn't be at the meeting(although in the end she was).
I was okay with the resource teacher taking the time to answer my questions.
I was NOT okay when the PT and the speech therapist backed out of the meeting.I told Andrew this and scratched my head
I wrote in Jonathan's binder communicator thing called a MOOSE. I also made it a hobby of mine to try to reach her and the evaluator. I know what our rights are, and I know it's within our rights to ask that they all be at this meeting.
Again I got a lot of double talk but I made my point that it was within our rights.
Not knowing that Andrew had been talking to the diagnostician and making the same point. The meeting was back on as they normally all try to excuse themselves from the meeting. Only this time they were all coming.
I had a dream a couple of weeks previous warning me of all this. They weren't going to give a lick about him and there was very little I could do about it. I mentioned this to Andrew and he shrugged it off.
I knew these people were going to play political games so I went online to an advocacy website and got some tips. I printed out a picture of Jonathan which was really great and really cute. The point of this was to remind everyone that we were there for Jonathan and not them. they still played games.
Well, everyone except the OT and the teacher. The low lite was when the PT said this: Oh he'll be okay you just need to get him into sports and the park to maintain his poor muscle tone.(Like that will help...we know NOTHING about physical therapy but apparently unless he's in a wheelchair they're refusing to help him.
Jonathan has been trying twice as hard as anyone else to do the same stuff and they are totally blind to this.He puts out more effort and he gets things done because he has no other choice.
They have modified his desk by velcro-ing a couple of phone books so make his more balanced and help him write.
He is being followed by the adaptive pe teacher who will see him only occasionally.
We were told they felt he needed outside therapy but didn't tell me how I am supposed to get this or how to pay for it. All they do is the educational part.
I'm really hoping something doesn't go horribly wrong for Jonathan and he does something like fall down the stairs(like he has in the recent past) or someone pushed him down on the playground. he already has come home with bruises and a big knot on his head. They will now have a problem since they know about his medical condition. He could easily really hurt himself doing things other kids don't even have to think about.
. I am going to try to have him excused and we are waiting on a referral for pt,OT and speech along with a developmental pediatrician. If I need to I won't hesitate to pull him out of school for it.. If you know of any educational advocates or attorneys specializing in special ed law in the DFW area, please let me know.Although we don't have a lot of money...if we need to we will spend some money for one and sue for legal fees.
We really are NOT into political anything when it comes to our kids so I really get a bit ticked off when stuff like this happens.
I would have posted something here but I was simply too mad and upset to write anything on this matter. I wanted fire to land on the PT for the stupid and inconsiderate things she said and how she just simply got up and walked out in the middle of the meeting. I had to forgive her, but that doesn't mean I won't be filing a complaint with the Education board. No one else should ever have to go through what we did.
None of this benefits Jonathan as far as going further.just to hold him at par. He can open doors,go up and down stairs and sit in his chair without help, but they won't help him.
The teacher tried to make several recommendations but she was only able to get half of what she suggested.
Like I said... the authority should be more weighted towards those with more direct contact with the student and the parents. The others could (I apologize for saying this) give a rat's ass about him.(sorry this is a figure of speech).
My faith in this school district is fuzzy. It's not to say we aren't coming across a great teacher here and there but as far as helping these kids...they FAIL EPIC Fail!
The dream was a warning and I am glad I had that dream so we would be prepared. I wasn't surprised to encounter these kind of people and that is great because I could have been totally blind to this and really had a mess on our hands.
Because this post went longer than I had anticipated...I will post an update with pictures and the Parent teacher conferences from yesterday ...sometime in this week.
Until then be blessed.
Wednesday, September 21, 2011
Well then...where are we?
Ever catch yourself saying this: Are we ______ or are we in _______?
I know I have heard myself think this. I've also heard my husband say he told his boss something like that.
He said are we at Work or we at Petsmart? I guess he was trying to find out what their pet policy was... People were bringing their dogs into the store and it felt like petsmart with dogs everywhere and them having to clean up after them.
The other day when we went to Daniel's new school and were waiting in their office to go to a meeting ; I caught myself asking myself: Are we in Texas or are we in Mexico... everyone was speaking spanish. even the teachers were.
Please just don't get me started on the school situation. I don't want to talk about it...but give me about a week and I will. we have a big meeting tomorrow with all of Jonathan's therapists, his teacher and everyone. I've already heard from 3 of them. 2 of them I totally disagree with and hope that something can be done to help JONATHAN. This is not about me but Jonathan. Lest we all forget. I could not care more about this kid even if no one else (even if they are supposed to care) does.
No one should be left to struggle at school. Especially when there are things that can be done to help him learn how to write, how to basically run and play without getting himself hurt. Unfortunately some of these professionals don't really give a rip about everyone because they are so bogged down with so much work.
Other than that we are really blessed. We have each other and are enjoying this ride we are all growing on called life.
Monday, September 12, 2011
What in the world
We've been dealing with a lot in our home lately. Some of it has been really hard, and some has been really exciting.
The Hard stuff:
When Jonathan started school about a month ago(or almost) we never imagined we'd ever have to deal with certain things. Some things we expected, and some complications arose that leave us feeling disturbed and sad.
Jonathan is beginning to notice that he has some challenges that make him not like other kids. He has been progressing steadily with his speech therapy, but still struggles to be understood real well when he speaks.
It really broke my heart when he came home one day in the second week of school and told me that his "words were broken and not working". He was feeling frustrated (and is still today).
It didn't help this situation when I found out the next thing.
After a few days of pure crying spells on Jonathan's behalf and him taking out his feelings out on mommy. I asked what was going on and he told me that kids were calling him names at some point in the day.
I sent the teacher an email both telling her the things I was hearing from him and asking what she had seen and heard. The teacher was very helpful and has so far been in his corner supporting him. She told me that this hadn't happened in her classroom and was probably happening on the school bus.
This was confirmed twice. WE HAVE A BULLY problem...on top of an already sensitive Jonathan going through his own discovery process of who he is.
Two trips to school later and 3 meetings later...we wait to see how they deal with the bully. Of course they told us that they cannot tell us exactly how they dealt with them ;). We told them the way we know they deal with it is when Jonathan tells us he doesn't feel harassed on the bus.
But there's MORE. Mommy has special experience with bullies. I having grown up with the same difficulties was bullied for the same reasons.
(okay now, for those that want to know)
I told Jonathan that we love him for who God made him and that no one has the right to make him feel bad for who he's not. He's as smart as he wants to be and despite his challenges, he can be what ever he wants to be when he's older.
I told him that no matter what he goes through both his dad and I were right here with him. All he has to do is tell us (or another trusted adult) when something is going on.
Jonathan's countenance rose up when he found out both his dad and I went to his school to help him deal with this.
But one thing bothers me. Jonathan just started KINDERGARTEN.
Okay enough said. Otherwise he is enjoying school and making friends.
Monday the 12th of September, Daniel started a preschool program. It's a half day (3 hour) five day a week program. Daniel will be receiving speech therapy along with learning standard stuff that preschoolers need to learn before they start school when they turn 5 with their peers.
We wait in anticipation of the day Daniel stops the tantrums and screaming and starts telling us what his needs are. He is a very sweet kid. of course we are biased because we LOVE him with everything in our being.
We know there will be progress.
We are anticipating going to get a second opinion of Jonathan's eyes. We saw a new eye doctor and he seemed convinced (without seeing Jonathan's chart from his previous eye doctor) that he needs surgery to correct his crossing eyes. We feel we need one because of how quickly this doctor came to this conclusion. We know positively nothing about this guy,and are not totally confident in this guys ability to do anything besides sell this procedure.
Until we see signs of a consultation or a progress report from Jonathan or his teacher I will have to say that no matter where we go.
or go through
It's a get to do something... not a HAVE to... Life is an adventure. Sometimes a crazy one with twists and turns but as long as we're all together.
We're blessed.
The Hard stuff:
When Jonathan started school about a month ago(or almost) we never imagined we'd ever have to deal with certain things. Some things we expected, and some complications arose that leave us feeling disturbed and sad.
Jonathan is beginning to notice that he has some challenges that make him not like other kids. He has been progressing steadily with his speech therapy, but still struggles to be understood real well when he speaks.
It really broke my heart when he came home one day in the second week of school and told me that his "words were broken and not working". He was feeling frustrated (and is still today).
It didn't help this situation when I found out the next thing.
After a few days of pure crying spells on Jonathan's behalf and him taking out his feelings out on mommy. I asked what was going on and he told me that kids were calling him names at some point in the day.
I sent the teacher an email both telling her the things I was hearing from him and asking what she had seen and heard. The teacher was very helpful and has so far been in his corner supporting him. She told me that this hadn't happened in her classroom and was probably happening on the school bus.
This was confirmed twice. WE HAVE A BULLY problem...on top of an already sensitive Jonathan going through his own discovery process of who he is.
Two trips to school later and 3 meetings later...we wait to see how they deal with the bully. Of course they told us that they cannot tell us exactly how they dealt with them ;). We told them the way we know they deal with it is when Jonathan tells us he doesn't feel harassed on the bus.
But there's MORE. Mommy has special experience with bullies. I having grown up with the same difficulties was bullied for the same reasons.
(okay now, for those that want to know)
I told Jonathan that we love him for who God made him and that no one has the right to make him feel bad for who he's not. He's as smart as he wants to be and despite his challenges, he can be what ever he wants to be when he's older.
I told him that no matter what he goes through both his dad and I were right here with him. All he has to do is tell us (or another trusted adult) when something is going on.
Jonathan's countenance rose up when he found out both his dad and I went to his school to help him deal with this.
But one thing bothers me. Jonathan just started KINDERGARTEN.
Okay enough said. Otherwise he is enjoying school and making friends.
Monday the 12th of September, Daniel started a preschool program. It's a half day (3 hour) five day a week program. Daniel will be receiving speech therapy along with learning standard stuff that preschoolers need to learn before they start school when they turn 5 with their peers.
We wait in anticipation of the day Daniel stops the tantrums and screaming and starts telling us what his needs are. He is a very sweet kid. of course we are biased because we LOVE him with everything in our being.
We know there will be progress.
We are anticipating going to get a second opinion of Jonathan's eyes. We saw a new eye doctor and he seemed convinced (without seeing Jonathan's chart from his previous eye doctor) that he needs surgery to correct his crossing eyes. We feel we need one because of how quickly this doctor came to this conclusion. We know positively nothing about this guy,and are not totally confident in this guys ability to do anything besides sell this procedure.
Until we see signs of a consultation or a progress report from Jonathan or his teacher I will have to say that no matter where we go.
or go through
It's a get to do something... not a HAVE to... Life is an adventure. Sometimes a crazy one with twists and turns but as long as we're all together.
We're blessed.
Sunday, September 4, 2011
Kindergarten!!!! Where did the time go?
Our First day of School
Jonathan started Kindergarten at Stonegate on August 22, 2011. We were lucky enough to go drop him off that morning.. Andrew followed him with the camera and took pictures. It made me think of the day I went to the hospital to have him. My how time flies.
Jonathan in his classroom. It is decked out in a cowboy theme.
Yep we must be in Texas. I think...But that is another post.
We love our new teacher. I think I heard her say she LOVED Jonathan.
I wasn't shedding tears a this point. We were Just really proud of him.
By the way I did cry as I left school.
Daniel will be starting a Pre school program for kids that need speech therapy a week from tomorrow. We meet with his new peeps on Friday morning. So far he has enjoyed having special mommy and daddy time with him. He really enjoys the part when we go play on the playground before we get brother off of his school bus.
We just want it to cool off some. It has been over 100 degrees here almost every day since we moved here. That has made it harder to go outside and play.
Sarah and mommy at the boo hoo/yee haw breakfast. The had donuts, juice and coffee. I think Andrew expected more. After we went out for breakfast.
We think Sarah misses Jonathan and Daniel is just eating up all the attention he can get.
So far Jonathan has been coming home tired and his teacher told me that he said that he wanted to go home so he could see mommy and take a nap.
He has been getting green marks in his book for behavior and we find stickers on him.
Sometimes he comes home telling me the things he did in school. Only thing is it's almost always in vague pieces.
Friday he came home and as we were walking back to our apartment from the bus, he told me something. He said his class ate pieces of the Gingerbread man. That's all I could get out of him.
So glad his teacher sent an email telling us they had gone on a scavenger hunt around their school for the gingerbread man...and at the end they ate a gingerbread cookie. So glad because I was utterly and impossibly confused. I laughed when I heard the facts.
Jonathan has started speech therapy and I hope will be starting PT and OT soon.
Be blessed
Yep we must be in Texas. I think...But that is another post.
We love our new teacher. I think I heard her say she LOVED Jonathan.
I wasn't shedding tears a this point. We were Just really proud of him.
By the way I did cry as I left school.
We just want it to cool off some. It has been over 100 degrees here almost every day since we moved here. That has made it harder to go outside and play.
We think Sarah misses Jonathan and Daniel is just eating up all the attention he can get.
So far Jonathan has been coming home tired and his teacher told me that he said that he wanted to go home so he could see mommy and take a nap.
He has been getting green marks in his book for behavior and we find stickers on him.
Sometimes he comes home telling me the things he did in school. Only thing is it's almost always in vague pieces.
Friday he came home and as we were walking back to our apartment from the bus, he told me something. He said his class ate pieces of the Gingerbread man. That's all I could get out of him.
So glad his teacher sent an email telling us they had gone on a scavenger hunt around their school for the gingerbread man...and at the end they ate a gingerbread cookie. So glad because I was utterly and impossibly confused. I laughed when I heard the facts.
Jonathan has started speech therapy and I hope will be starting PT and OT soon.
Be blessed
Subscribe to:
Posts (Atom)