This is going to be a quick post...I am rushing around trying to get everything ready for Thomas' 3rd Birthday tomorrow (it is his actual birthday "day", too).
I also have to mark Thomas' anniversary as being a bilateral boy. 1yr ago today Thomas 2nd CI was activated ~ it didnt go as well as I had liked but within a few long weeks he was wearing both processors and within a few months he was loving hearing from both ears.
The decision for the 1st implant was a "no brainer". We wanted Thomas to hear and the CI was our only choice. Thomas' surgeon only implants one ear at a time and for us that was OK (looking back I would have preffered to have them both done at the same time). The decision for a 2nd implant was a difficult one. Thomas was profound in his left ear but he it wasnt as bad as his right ear. He could still turn to sound and hear some things ~ I think our hesitation had to do with cosmetic reasons also. I couldnt imagine my poor little boy having to have these things hanging off his ears and sticking to his head for the rest of his life ~ one side was OK..I couldnt imagine both sides. Looking back I realize how foolish that was but that's how we felt.
Now his processors have become a part of who he is. He wakes up and the processors go on....after bath ~ processors on...coil falls off ~ flip it back on. Its no longer a chore or a struggle. Thomas wants both ears on ALL the time. He loves to hear, he loves to listen, he loves to talk!
I can't believe Thomas will be 3yrs old tomorrow. We have come such a long way ~ it has been a road of ups and downs but it is SOOOO worth it. We are going to have a lovely Birthday party with our family tomorrow ~ we had to call a few friends with little ones to tell them that Thomas is sick so we'll get together next week. I kind of heard the sickies start in Thomas' voice yesterday ~ I thought it may have just been allergies. This morning he woke up with a cough, runny nose, sneezing and he told me his head hurt. Poor kid ~ i do hope he is feeling much better by tomorrow.
Happy 3rd Birthday, Thomas ~ my sweet bilateral boy!!!
Friday, April 17, 2009
Thursday, April 9, 2009
IEP..done
We had our meeting with the school district yesterday. It went fairly quick ~ there was some give and take ~ although the goals set up for Thomas are wonderful I am still not happy with the time allotted for speech therapy. So, we will give it a few months and if I don't think that Thomas is progressing like I think he should than I will request a change be made (and more meetings,etc.)
I pray that the IEP, as it is, will be perfect for Thomas. We will continue with our private SLP for as long as needed ~ carrying along our communication notebook so our private SLP, Thomas' TOD and the school's SLP can all communicate to one another.
These past few days have been quiet with no Dad or Big Brother. It has been nice to not get up at the crack of dawn and rush around and get things done. Thomas and I have been taking it easy, especially in the mornings. He wakes up ~ brings his toys in my room~ crawls up on my bed and snuggles in next to me. Sometimes we fall back asleep but we usually end up talking (he is becoming a pretty good lip reader) or watching the news (or playhouse disney)~ by this time his ears are on!
My older boys are expected home sometime Sunday evening or Monday afternoon (depending on when they leave). Until than, Thomas and I are going to enjoy the peace and quiet and have fun playing with play doh, magic sand, toys, playing school and pretending to be on the school bus (this is when we are in the car going someplace). Thomas and the "kids" are on the bus and I am the bus driver. He will say different things like "OK, kids, put your seat belts on"..."Kids, you have to be quiet"..."Kids, were almost at school". It's pretty cute. Thomas has such a wonderful imagination ~ you can't help but get wrapped up in it and feel like a little kid again. We went to the mall to get his pictures taken today and he even had the photographer involved in his story.
Just a few more lazy mornings ~ and we are going to thoroughly enjoy them before we are back to the hustle and bustle of our regular routine!
I pray that the IEP, as it is, will be perfect for Thomas. We will continue with our private SLP for as long as needed ~ carrying along our communication notebook so our private SLP, Thomas' TOD and the school's SLP can all communicate to one another.
These past few days have been quiet with no Dad or Big Brother. It has been nice to not get up at the crack of dawn and rush around and get things done. Thomas and I have been taking it easy, especially in the mornings. He wakes up ~ brings his toys in my room~ crawls up on my bed and snuggles in next to me. Sometimes we fall back asleep but we usually end up talking (he is becoming a pretty good lip reader) or watching the news (or playhouse disney)~ by this time his ears are on!
My older boys are expected home sometime Sunday evening or Monday afternoon (depending on when they leave). Until than, Thomas and I are going to enjoy the peace and quiet and have fun playing with play doh, magic sand, toys, playing school and pretending to be on the school bus (this is when we are in the car going someplace). Thomas and the "kids" are on the bus and I am the bus driver. He will say different things like "OK, kids, put your seat belts on"..."Kids, you have to be quiet"..."Kids, were almost at school". It's pretty cute. Thomas has such a wonderful imagination ~ you can't help but get wrapped up in it and feel like a little kid again. We went to the mall to get his pictures taken today and he even had the photographer involved in his story.
Just a few more lazy mornings ~ and we are going to thoroughly enjoy them before we are back to the hustle and bustle of our regular routine!
Sunday, April 5, 2009
IEP...continued
I don't know why ~ but this past week has been a sort of "hell week". I think I have cried almost every day for some reason or another. I am beyond frustration (which, I think, is the main reason I have been so emotional) with a few things. My main area of concern (and frustration) has been Thomas' IEP.
We had Thomas' IEP meeting this past Wednesday. I am very happy that Anedra was there with us...together we brought up most of what I wanted discussed. I have to admit that I'm not the best at remembering people's names. So when different people kept walking into the room, I was quickly introduced to them ~ told what their title was as they sat down and the meeting eventually started. As the different goals were introduced I was told "Mrs. so and so will be working with Thomas on this"...."Ms. so and so will be with him this time"..etc. I should have brought some name tags so they could have written their name and title on it ~ I would have liked to place a name and face with what they did and how they would be "helping" Thomas. After the 2hr meeting I pretty much had each person and their role imprinted in my brain.
There was myself, Anedra, psychologist, SLP (from school), itinerant teacher, educational audiologist, TOD (whom I found out has worked with our private SLP and our private SLP LOVES her) and a student teacher. There were 8 of us all together sitting around a table big enough for 6. I was told how Thomas did at his evaluation ~ I was told that Thomas does qualify for services based on his hearing loss alone (they go by pre-surgery diagnosis).
There were a few items that needed to be addressed and changed. One BIG one for me was addressed and NOT changed ~ which I was less than thrilled about.
The results from his testing are quite extensive, I won't go into every detail here, but he did test within normal range for both expressive and receptive language skills. Although he does have a moderate expressive language delay, a moderate delay in articulation, final consonant deletion, cluster reduction and syllable reduction.
By the end of the 2hr meeting (which was supposed to last an hour) ~ I left the meeting with the IEP NOT signed. Since the IEP was not signed and I have a few issues that need to be resolved another meeting had to be scheduled. The IEP is supposed to be signed by the time Thomas is 3 (April 18th)...the districts last day of school before spring break is April 9th, they will be on break the week before Thomas turns 3 so they need the IEP signed before the 9th. We scheduled the meeting for this Wednesday April 8th.
I think this is another point of my frustration. Jonathan is on spring break this week ~ we were supposed to take a family vacation to go visit my sister in law in South Carolina. We have ALL been looking forward to this trip. The weather here in Ohio has been pretty crappy and this week's forecast is miserable...rain/snow/wind temps in the mid 30's to low 40's. South Carolina's forecast ~ lower to mid 70's all week ~and sunny!!!! Jonathan was really bummed that we weren't going on our trip ~ we talked and decided that Jonathan and Jim should still go on vacation. So they left this morning around 330am ~ they should be arriving to a beautiful, sunny and warm Columbia early this afternoon.
This may get a little raw....
I am so totally pissed off. I am pissed off that Thomas and I are stuck at home. I am pissed off that although spring has officially arrived the weather here sucks. I am pissed that I feel alone during this process, hubby has decided to take a backseat instead of becoming more involved and taking some of the pressure off of me, I am pissed that when I talk about this to my family they listen but I know they don't understand, I am pissed that this whole IEP process is such a pain in the @$$. The parent knows what is needed for their child to succeed. They know their child best. They certainly know their child better than a professional who played with him for an hour. Certainly better than the professionals who NEVER met Thomas but based their assessments on test scores. We are not asking for alot but the school district barely wants to give a little. Do they understand that he needs these services to stay age appropriate and consistent with his hearing peers? What happened to wanting the best for each child? I won't mention which professional asked this question at our meeting but when I heard "can he even hear the sh sound?" I almost jumped on the table. The audi said "oh yes, he hears the sh sound. that is what is so great about the cochlears..they are so different than hearing aids". I wanted to ask the person who asked this question "Have you EVER worked with a child with CI's before?, If not, please leave". But I didn't. I kept my mouth shut. If I would have said anything at that point I knew I would have spoke in a really $hitty tone ~ I don't want to be labeled "difficult" before Thomas starts school.
I am pissed that we even need to do this IEP for Thomas. I am pissed that he will never have it "easy" in school. I am pissed that the school district doesn't care that he needs some extra help in certain areas. I am pissed that I am not on vacation, I am pissed that its going to rain and snow again. I am pissed that I have not gotten a good nights sleep all week, which I think is fueling my feelings of helplessness and frustration.
Today is supposed to be sunny and cold (rain tonite). I am going to get Thomas bundled up and go for a nice, long walk. This afternoon we are going out with family and watch the Cavs game. I hope Thomas goes to bed early tonite ~ the house will be quiet, I will be tired and I am hoping to get a good nights sleep. After venting in this post, taking a nice hot shower, going on a long, much needed walk, having a good time and alot of laughs this afternoon and getting a full night sleep ~ I certainly hope that this will be the end of my hell week. I haven't had days like this in a long time. Thanks for listening to me and letting me get this off of my chest. I feel better already!!! Keep your fingers crossed that everything gets ironed out with the IEP Wednesday ~ I REALLY don't want this to have to go to mediation! But, I will fight for my kids forever!!!!
We had Thomas' IEP meeting this past Wednesday. I am very happy that Anedra was there with us...together we brought up most of what I wanted discussed. I have to admit that I'm not the best at remembering people's names. So when different people kept walking into the room, I was quickly introduced to them ~ told what their title was as they sat down and the meeting eventually started. As the different goals were introduced I was told "Mrs. so and so will be working with Thomas on this"...."Ms. so and so will be with him this time"..etc. I should have brought some name tags so they could have written their name and title on it ~ I would have liked to place a name and face with what they did and how they would be "helping" Thomas. After the 2hr meeting I pretty much had each person and their role imprinted in my brain.
There was myself, Anedra, psychologist, SLP (from school), itinerant teacher, educational audiologist, TOD (whom I found out has worked with our private SLP and our private SLP LOVES her) and a student teacher. There were 8 of us all together sitting around a table big enough for 6. I was told how Thomas did at his evaluation ~ I was told that Thomas does qualify for services based on his hearing loss alone (they go by pre-surgery diagnosis).
There were a few items that needed to be addressed and changed. One BIG one for me was addressed and NOT changed ~ which I was less than thrilled about.
The results from his testing are quite extensive, I won't go into every detail here, but he did test within normal range for both expressive and receptive language skills. Although he does have a moderate expressive language delay, a moderate delay in articulation, final consonant deletion, cluster reduction and syllable reduction.
By the end of the 2hr meeting (which was supposed to last an hour) ~ I left the meeting with the IEP NOT signed. Since the IEP was not signed and I have a few issues that need to be resolved another meeting had to be scheduled. The IEP is supposed to be signed by the time Thomas is 3 (April 18th)...the districts last day of school before spring break is April 9th, they will be on break the week before Thomas turns 3 so they need the IEP signed before the 9th. We scheduled the meeting for this Wednesday April 8th.
I think this is another point of my frustration. Jonathan is on spring break this week ~ we were supposed to take a family vacation to go visit my sister in law in South Carolina. We have ALL been looking forward to this trip. The weather here in Ohio has been pretty crappy and this week's forecast is miserable...rain/snow/wind temps in the mid 30's to low 40's. South Carolina's forecast ~ lower to mid 70's all week ~and sunny!!!! Jonathan was really bummed that we weren't going on our trip ~ we talked and decided that Jonathan and Jim should still go on vacation. So they left this morning around 330am ~ they should be arriving to a beautiful, sunny and warm Columbia early this afternoon.
This may get a little raw....
I am so totally pissed off. I am pissed off that Thomas and I are stuck at home. I am pissed off that although spring has officially arrived the weather here sucks. I am pissed that I feel alone during this process, hubby has decided to take a backseat instead of becoming more involved and taking some of the pressure off of me, I am pissed that when I talk about this to my family they listen but I know they don't understand, I am pissed that this whole IEP process is such a pain in the @$$. The parent knows what is needed for their child to succeed. They know their child best. They certainly know their child better than a professional who played with him for an hour. Certainly better than the professionals who NEVER met Thomas but based their assessments on test scores. We are not asking for alot but the school district barely wants to give a little. Do they understand that he needs these services to stay age appropriate and consistent with his hearing peers? What happened to wanting the best for each child? I won't mention which professional asked this question at our meeting but when I heard "can he even hear the sh sound?" I almost jumped on the table. The audi said "oh yes, he hears the sh sound. that is what is so great about the cochlears..they are so different than hearing aids". I wanted to ask the person who asked this question "Have you EVER worked with a child with CI's before?, If not, please leave". But I didn't. I kept my mouth shut. If I would have said anything at that point I knew I would have spoke in a really $hitty tone ~ I don't want to be labeled "difficult" before Thomas starts school.
I am pissed that we even need to do this IEP for Thomas. I am pissed that he will never have it "easy" in school. I am pissed that the school district doesn't care that he needs some extra help in certain areas. I am pissed that I am not on vacation, I am pissed that its going to rain and snow again. I am pissed that I have not gotten a good nights sleep all week, which I think is fueling my feelings of helplessness and frustration.
Today is supposed to be sunny and cold (rain tonite). I am going to get Thomas bundled up and go for a nice, long walk. This afternoon we are going out with family and watch the Cavs game. I hope Thomas goes to bed early tonite ~ the house will be quiet, I will be tired and I am hoping to get a good nights sleep. After venting in this post, taking a nice hot shower, going on a long, much needed walk, having a good time and alot of laughs this afternoon and getting a full night sleep ~ I certainly hope that this will be the end of my hell week. I haven't had days like this in a long time. Thanks for listening to me and letting me get this off of my chest. I feel better already!!! Keep your fingers crossed that everything gets ironed out with the IEP Wednesday ~ I REALLY don't want this to have to go to mediation! But, I will fight for my kids forever!!!!
Wednesday, April 1, 2009
IEP Meeting
I can't believe this day has come already. My little boy is turning 3 in 3weeks ~ which means (for IEP purposes) that his IEP must be completed and signed by April
18th.
I have thought about this for a long time..preparing and freaking out a bit. Thank goodness for early intervention...especially our RIHP outreach specialist, Ms. Anedra. She has been SOOOO helpful helping us prepare for Thomas' IEP. Thankfully she will be sitting next to me today, and she has my permission to speak up if I miss something or if I start to get nervous. She stopped over yesterday and we spent alot of time going over my goals/requests and questions. We went over a sample IEP and discussed what I should do when something is brought up that I dont agree with ~Now i know that I can interject at any time..I don't want to be rude and interrupt them but they have to remember that I am there to advocate for Thomas...I will try my best to be polite and considerate.
Jim was called in to work today so he won't be able to attend the meeting. Which means I will fill him in when he gets home and we will go through every last detail...the IEP will be signed when we both agree on everything written. So the IEP will not be signed today.
I'm not sure why I'm so nervous about this meeting. I pray that it goes smoothly, that Thomas receives everything that we request and that there is no drama. I also hope that I dont start crying. While Anedra and I were sitting around are bounty of papers yesterday I had said "This is really hard for me to put someone else in "control" of Thomas, I have been his primary teacher for the past 3yrs ~ staying at home with him has been an absolute blessing ~ but it also makes it really hard for me to let go of him (even if its only for afew hours a day)". And by the end of my sentence I was tearing up.
A big THANK YOU also goes to Thomas' SLP. Anedra asked her if she could fax/email over her recommendations. At Thomas' therapy appointment yesterday she gave me her recommendations....I brought it home and showed it to Anedra. She read it over and said "this is your IEP". Its perfect! It includes everything we want for Thomas ~ from FM system/speech therapy/audiological services/personnel training/lesson accomodations/supplies/communication/classroom acoustics, etc. After we go over what the school is offering I will hand them Lindsay's (SLP) letter.
I also have a list of Thomas' spoken words/phrases. I hadnt updated it in a few months, as most of you know with our little CI rockstars, its hard to keep up with all of their new vocabulary! So I updated it as much as I could ~ this morning while Thomas and I were chatting I realized that I missed words! Oh well...they will get the point. The list is 7 pages long ~ I will try write in what I think I missed.
So I am going in armed with his book of spoken words, my personal checklist of questions/concerns, Lindsays recomendations, Anedra and a feeling of wanting ONLY the BEST for Thomas. Anything less than that will not be accepted!
18th.
I have thought about this for a long time..preparing and freaking out a bit. Thank goodness for early intervention...especially our RIHP outreach specialist, Ms. Anedra. She has been SOOOO helpful helping us prepare for Thomas' IEP. Thankfully she will be sitting next to me today, and she has my permission to speak up if I miss something or if I start to get nervous. She stopped over yesterday and we spent alot of time going over my goals/requests and questions. We went over a sample IEP and discussed what I should do when something is brought up that I dont agree with ~Now i know that I can interject at any time..I don't want to be rude and interrupt them but they have to remember that I am there to advocate for Thomas...I will try my best to be polite and considerate.
Jim was called in to work today so he won't be able to attend the meeting. Which means I will fill him in when he gets home and we will go through every last detail...the IEP will be signed when we both agree on everything written. So the IEP will not be signed today.
I'm not sure why I'm so nervous about this meeting. I pray that it goes smoothly, that Thomas receives everything that we request and that there is no drama. I also hope that I dont start crying. While Anedra and I were sitting around are bounty of papers yesterday I had said "This is really hard for me to put someone else in "control" of Thomas, I have been his primary teacher for the past 3yrs ~ staying at home with him has been an absolute blessing ~ but it also makes it really hard for me to let go of him (even if its only for afew hours a day)". And by the end of my sentence I was tearing up.
A big THANK YOU also goes to Thomas' SLP. Anedra asked her if she could fax/email over her recommendations. At Thomas' therapy appointment yesterday she gave me her recommendations....I brought it home and showed it to Anedra. She read it over and said "this is your IEP". Its perfect! It includes everything we want for Thomas ~ from FM system/speech therapy/audiological services/personnel training/lesson accomodations/supplies/communication/classroom acoustics, etc. After we go over what the school is offering I will hand them Lindsay's (SLP) letter.
I also have a list of Thomas' spoken words/phrases. I hadnt updated it in a few months, as most of you know with our little CI rockstars, its hard to keep up with all of their new vocabulary! So I updated it as much as I could ~ this morning while Thomas and I were chatting I realized that I missed words! Oh well...they will get the point. The list is 7 pages long ~ I will try write in what I think I missed.
So I am going in armed with his book of spoken words, my personal checklist of questions/concerns, Lindsays recomendations, Anedra and a feeling of wanting ONLY the BEST for Thomas. Anything less than that will not be accepted!
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