I know I've been absent on the blog. No particular reason...overall things are going well, I"ve just been very busy. I am still training hard for my half-Ironman distance triathlon, which is in September. We're wrapping up the school year, which is a whirlwind of activity, not only for the kids but for the school Foundation I'm a part of. We took the kids to Disneyland for a few days, and are getting ready to re-do our kitchen.....really, just life has gotten in the way.
One thing that has happened recently that is getting me down, though, is my daughter's recent IEP. Last week was her annual review. It ended up being over 2 days, as one of the therapists couldn't come one day. So on Monday we met with her Physical Therapist (PT), Occupational Therapist (OT), Speech Therapist (ST), and Adapted P.E. (APE) teacher. On Tuesday we met with her Deaf/Hard-of-Hearing (DHH) Therapist. Present both days were her kindergarten teacher, the Speech Therapist, the Resource Specialist (who acts as A's case manager) and the Program Director.
Overall, A is doing very well. In PT, OT and APE she has met most of her goals and has made progress toward the rest. In Speech and DHH, however, she making progress but not as much as we'd like. Her expressive language is still very delayed (a language sample transcript shows her language to be about that of a 3 year old; she'll be 6 next month). All 5 of her therapists wrote tons of goals for her for next year...so many! I know this a good thing. If they didn't think she was capable, they wouldn't make so many goals, so set the bar so high. She'll be pulled out from class a lot next year, even more so than this year.
The question is, where do we place her? She'll be in kindergarten again; she is in a great 2-year kindergarten program which is for kids born June-November, who would normally be the youngest kids in the class. This gives young kids an extra year of growth. So next year is Year 2 of kindergarten, this time at our home school (our home school doesn't have this 1st year of kindergarten, so she's at another school in our district). Academically, A is right on target (reading, writing, counting) and does not qualify for Special Day Class. What she NEEDS is a DHH class, a small class just geared toward deaf/hard-of-hearing kids. But my school district does not have such a class.
We CAN think about putting her elsewhere. A school district near us has a DHH class that mainstreams for some activities. And, even farther away there is a private DHH school, with only DHH kids. This intrigues me a lot. Our DHH therapist said that most kids only go to that school for a year or two, then transfer back to their home school. Most kids' language is greatly enhanced by going there.
In the end, we decided to try A at our regular home school in the fall. I want to see how she does this summer and receiving school services again. In the fall, October or November, I will call an emergency IEP and meet with all the therapists. If she is making progress, we will keep her where she is. If not, I will start the fight for the district to move her to one of the DHH schools as soon as possible. Six months is a long time, and I want to see what more we can do for her at home and at school. (I already have her in a language pragmatics/social skills group that I pay for privately once a week; she'll continue over the summer. I'm also looking into another such group, and maybe 1:1 speech therapy. I am also calling the DHH school this week to see if there is a summer program that we can enroll in).
The hard part is knowing if we're doing what's best for her. I want her language to improve. It IS improving. I also don't WANT her to be segregated with just DHH kids, but I will if that's what best for her, especially if it's only for a year or two. I guess time will tell. The good news is that no decision is irreversible, and we can put her in a DHH class or a general ed class at any time. The bad news? Parenting is hard. Making these decisions is awful.
Showing posts with label IEP. Show all posts
Showing posts with label IEP. Show all posts
May 21, 2012
January 23, 2012
An IEP for the Home?
My daughter has an IEP at school (Individualized Education Program) which is a legal document that lists all of her needs and how the school is going to help. We have an annual IEP meeting, where all of her therapists and teachers get together to discuss her progress, and we make goals for the following year. Here is where her services are set: deciding which therapies she'll be getting, such as speech therapy and occupational therapy, as well as how many hours of each therapy she'll be getting each week.
Also in these meetings, all classroom adaptations are discussed. For example, because of her vision and hearing issues, she needs to sit in the front of the classroom on the left-hand side. Since her vision AND hearing is better in her right ear and eye, sitting on the left side of the class puts her right eye and ear closer to the teacher. Other adaptations, such as giving her special scissors to use and a bench to put on her her feet for stability, are also brought up here in these IEP meetings.
While she is getting such great support in the classroom, it turns out we're not doing as well at home. This weekend we realized that for years, we've had A sitting in the wrong place at the dinner table! Our seating arrangement has always been me on the left side of the table, with A next to me at my right; across from me is my son, D; and next to D (diagonal from me) is my husband, J. Often at dinner A will ask "what did you say?" and we'll repeat ourselves. Sometimes I even check her hearing aide battery to see if it's still on! It never, EVER occurred to us that she was in the wrong seat! Her "good" ear, the right one, was facing nobody. She needed to be sitting in MY seat, so her right ear would be pointing toward the middle of the table. J noticed this issue this weekend, and it was like a lightbulb going off over our heads.
Oh. My. Goodness.
I feel so bad! How could we not have noticed this error in seating? It's remedied now, so hopefully A will be able to hear more at the dinner table. But gosh---sometimes I wish a professional could come in to our home and point things like this out!
Also in these meetings, all classroom adaptations are discussed. For example, because of her vision and hearing issues, she needs to sit in the front of the classroom on the left-hand side. Since her vision AND hearing is better in her right ear and eye, sitting on the left side of the class puts her right eye and ear closer to the teacher. Other adaptations, such as giving her special scissors to use and a bench to put on her her feet for stability, are also brought up here in these IEP meetings.
While she is getting such great support in the classroom, it turns out we're not doing as well at home. This weekend we realized that for years, we've had A sitting in the wrong place at the dinner table! Our seating arrangement has always been me on the left side of the table, with A next to me at my right; across from me is my son, D; and next to D (diagonal from me) is my husband, J. Often at dinner A will ask "what did you say?" and we'll repeat ourselves. Sometimes I even check her hearing aide battery to see if it's still on! It never, EVER occurred to us that she was in the wrong seat! Her "good" ear, the right one, was facing nobody. She needed to be sitting in MY seat, so her right ear would be pointing toward the middle of the table. J noticed this issue this weekend, and it was like a lightbulb going off over our heads.
Oh. My. Goodness.
I feel so bad! How could we not have noticed this error in seating? It's remedied now, so hopefully A will be able to hear more at the dinner table. But gosh---sometimes I wish a professional could come in to our home and point things like this out!
December 20, 2011
Parent-Teacher Conference Woes
I haven't written an update on my daughter, A, in some time. This is not because she isn't doing well; actually, to the contrary, she is doing great. I haven't written about her recently because I am harboring some anxiety about her, and to write about it would mean actually having to deal with the issues in my mind. However, I am finally ready to write it all out.
As I wrote a few months ago, she is doing well in kindergarten. A is in the first of a two-year kindergarten program; this program is geared toward typically-developing children, who were born June through November. Ordinarily, these kids would be the youngest in their classes. The district recognizes that young kids may need an extra year of growth (social, emotional, etc) and offers this two-year program as an option for parents. You don't HAVE to enroll your child in the program if they're born June-November; you can go right ahead and put them in the regular one-year kindergarten class. For me, however, enrolling A was a no-brainer. I knew she needed this extra year, and am grateful she qualified based on her birthday (otherwise I would have had to fight to enroll her).
Last month her report card came out and we had her parent-teacher conference. The report card made me happy; the conference did not.
Let me explain.
Her report card showed her pretty much right where she should be. Academically, she is excelling, and is even above "grade level" in some areas (I put "grade level" in quotations, as there really is no grade level for the first year in a two-year kindergarten.) She is reading, and knows all of the sight words she's been taught. She's a pro at reading 3-letter words, and at home is almost done reading the Level One books of the Hooked on Phonics series to me. She is at "grade level" with math and most other things too. It was noted that she was behind on language, but that wasn't anything I didn't expect.
Her teacher, during the conference, expressed some concerns about A for next year. She said that while she is excelling academically, she worries about her with social and language issues, especially with language pragmatics, which essentially is using language in a social context. At home, she not too bad with it, but at school she is very quiet. She is very well-liked and has a lot of friends in the class (one girl even gave her a Best Friends Forever necklace last week) but I'm not sure how well she is relating to the kids. The teacher reported that the kids treat her "like a doll". For example, A will be playing with blocks and another child will say, "A, come play dolls with me." A will go and play...but when the teacher would ask is she had wanted to play dolls, she said no. She is not speaking up for herself in social situations, or having full conversations. Again, this is odd, because at home she talks in full sentences all the time.
The teacher thinks that A has the most problems during free play, when the classroom is very noisy. With her hearing aides, she may not be able to tune out the ambient noise. There are 26 kids in the room, and trust me, it gets noisy (I'm in there every Thursday to volunteer). During instruction time, when the class is quiet, she is doing well. She suggested that next year A spend some time in a special day class, for part of each day, in order to give her some quieter time.
Well, this doesn't sit well with me at all. I'm not opposed to a special day class if there was one that is appropriate for her...but in my district, there isn't one. The highest level of special ed class, the non-severely handicapped class, is way below her level. I observed it this past May, and watched as kindergarteners were being called up to the board to point out letters. If I put A in this class, this is where she's be expected to be A YEAR FROM MAY...pointing out letters of the alphabet. The child is already reading! Yes, the class was small and quiet, but I can't put her in an academic environment where she'd wither.
I've been considering other options, such as private school. However, from what I'm hearing from talking to others, private schools aren't always the answer. They often have large class sizes (as the schools want the money) and they aren't necessarily equipped to handle special needs. There is a deaf/hard-of-hearing school, but I'm not sure I want to segregate her. Besides, she is doing well right now where she is.
I called an IEP (the first one I've called---all my others have been her scheduled, annual reviews). The people there (her teachers and all her therapists) were convinced that they could meet her needs in the school district. We added another half-hour of speech therapy, with even more focus on social skills. We also added another occupational therapy goal of coloring, and the OT may be adding a goal of sensory processing. They talked about other things to do in the classroom to help her (put a stool under her feet, etc). They, too, nixed the idea of a special day class---she needs to be in the least restrictive educational environment, and she's too bright for the level of classes they have, at least at this time. I left the IEP feeling really good about what we're putting into place.
Additionally, I have found a local private clinic that has a social skills class, focusing on the language pragmatics! A has already been 3 times. I love that we're doing something extra, outside of school, to help her. And even at home, I'm prompting her more to use complete sentences rather than one-word demands (i.e. saying "I want some water, please" instead of "WATER!").
My plan is to enroll her at our home school next year for kindergarten (she's at a different elementary school right now, as our home school doesn't have the two-year class). We'll see how she does. If I have concerns, I'll raise them. If I find it's not the best fit for her, I'll look into other schooling options. I want to do what's best for her, and time and money are not the issues. It's finding the place where she's going to thrive. Nothing has to be set in stone; no placement is unchangeable. I'd hate to have to move her in the middle of a school year, but if I'm not happy next year, I'll do it.
I'm convinced that this little girl has what it takes to thrive. It's my job to ensure that she has every opportunity to do so.
As I wrote a few months ago, she is doing well in kindergarten. A is in the first of a two-year kindergarten program; this program is geared toward typically-developing children, who were born June through November. Ordinarily, these kids would be the youngest in their classes. The district recognizes that young kids may need an extra year of growth (social, emotional, etc) and offers this two-year program as an option for parents. You don't HAVE to enroll your child in the program if they're born June-November; you can go right ahead and put them in the regular one-year kindergarten class. For me, however, enrolling A was a no-brainer. I knew she needed this extra year, and am grateful she qualified based on her birthday (otherwise I would have had to fight to enroll her).
Last month her report card came out and we had her parent-teacher conference. The report card made me happy; the conference did not.
Let me explain.
Her report card showed her pretty much right where she should be. Academically, she is excelling, and is even above "grade level" in some areas (I put "grade level" in quotations, as there really is no grade level for the first year in a two-year kindergarten.) She is reading, and knows all of the sight words she's been taught. She's a pro at reading 3-letter words, and at home is almost done reading the Level One books of the Hooked on Phonics series to me. She is at "grade level" with math and most other things too. It was noted that she was behind on language, but that wasn't anything I didn't expect.
Her teacher, during the conference, expressed some concerns about A for next year. She said that while she is excelling academically, she worries about her with social and language issues, especially with language pragmatics, which essentially is using language in a social context. At home, she not too bad with it, but at school she is very quiet. She is very well-liked and has a lot of friends in the class (one girl even gave her a Best Friends Forever necklace last week) but I'm not sure how well she is relating to the kids. The teacher reported that the kids treat her "like a doll". For example, A will be playing with blocks and another child will say, "A, come play dolls with me." A will go and play...but when the teacher would ask is she had wanted to play dolls, she said no. She is not speaking up for herself in social situations, or having full conversations. Again, this is odd, because at home she talks in full sentences all the time.
The teacher thinks that A has the most problems during free play, when the classroom is very noisy. With her hearing aides, she may not be able to tune out the ambient noise. There are 26 kids in the room, and trust me, it gets noisy (I'm in there every Thursday to volunteer). During instruction time, when the class is quiet, she is doing well. She suggested that next year A spend some time in a special day class, for part of each day, in order to give her some quieter time.
Well, this doesn't sit well with me at all. I'm not opposed to a special day class if there was one that is appropriate for her...but in my district, there isn't one. The highest level of special ed class, the non-severely handicapped class, is way below her level. I observed it this past May, and watched as kindergarteners were being called up to the board to point out letters. If I put A in this class, this is where she's be expected to be A YEAR FROM MAY...pointing out letters of the alphabet. The child is already reading! Yes, the class was small and quiet, but I can't put her in an academic environment where she'd wither.
I've been considering other options, such as private school. However, from what I'm hearing from talking to others, private schools aren't always the answer. They often have large class sizes (as the schools want the money) and they aren't necessarily equipped to handle special needs. There is a deaf/hard-of-hearing school, but I'm not sure I want to segregate her. Besides, she is doing well right now where she is.
I called an IEP (the first one I've called---all my others have been her scheduled, annual reviews). The people there (her teachers and all her therapists) were convinced that they could meet her needs in the school district. We added another half-hour of speech therapy, with even more focus on social skills. We also added another occupational therapy goal of coloring, and the OT may be adding a goal of sensory processing. They talked about other things to do in the classroom to help her (put a stool under her feet, etc). They, too, nixed the idea of a special day class---she needs to be in the least restrictive educational environment, and she's too bright for the level of classes they have, at least at this time. I left the IEP feeling really good about what we're putting into place.
Additionally, I have found a local private clinic that has a social skills class, focusing on the language pragmatics! A has already been 3 times. I love that we're doing something extra, outside of school, to help her. And even at home, I'm prompting her more to use complete sentences rather than one-word demands (i.e. saying "I want some water, please" instead of "WATER!").
My plan is to enroll her at our home school next year for kindergarten (she's at a different elementary school right now, as our home school doesn't have the two-year class). We'll see how she does. If I have concerns, I'll raise them. If I find it's not the best fit for her, I'll look into other schooling options. I want to do what's best for her, and time and money are not the issues. It's finding the place where she's going to thrive. Nothing has to be set in stone; no placement is unchangeable. I'd hate to have to move her in the middle of a school year, but if I'm not happy next year, I'll do it.
I'm convinced that this little girl has what it takes to thrive. It's my job to ensure that she has every opportunity to do so.
May 24, 2011
Pre-Kindergarten IEP
Today was A's annual IEP (individualized education program). This time it was a triennial IEP, with her transitioning to kindergarten next year, so a huge battery of tests had been administered over the past few weeks. This was our third IEP with her, and both had gone very well. I was overall pleased with their recommendations last year, except for the fact that they had recommended a Special Day Class, mainly to contain all of her services to one site. Having nixed that, I kept A in her inclusion preschool all year. Seeing all the testing results, I am 100% sure that was the right choice.
Why? Because all of her testing (except for gross motor skills, which we knew would be below average) shows her at the average level.
Let me back up. There were a million people present at the meeting today: the program director, school psychologist, psychologist intern, occupational therapist, physical therapist, vision therapist, deaf/hard-of-hearing therapist, speech therapist, resource specialist, two of her preschool teachers, my husband and myself. Her adapted P.E. therapist and the district nurse were unable to attend, but they had sent their reports.
Most of the people in the room had done testing on A....and as I said, everything puts her in the average range. Academically, she scored in the average range (on two separate tests!) in writing, reading and math! I couldn't believe it....her writing is average! This is the same girl who could barely draw a circle last summer. Now she is writing most of her letters. Her language is in the average range. Her IQ is average! Average is my new favorite word!
Of course, A still has a long way to go. Her gross motor skills are very behind, and she still needs a lot of work on language pragmatics (that is, talking in socialized settings, having conversations, etc). The language is IN her, we just need to help her get it out. But I know that she will get to where we want her to be. Everyone present at the IEP, without exception, talked glowingly about my daughter, about how self-motivated she is and how she continues to make progress without plateau.
Because all of her testing was average, for the first time in our IEP history the words Special Day Class wasn't even brought up! She doesn't need it! She will go to regular, general ed kindergarten next year. Luckily, our school district offers an amazing two-year kindergarten for kids born June-November, who would otherwise be the youngest kids in the class, to give them an extra year of kindergarten, an extra year of growth. This is what I am going to enroll A in....to give her the gift of an extra year. She needs an extra year of growth, both physically and language-wise. Plus, it gives her an extra year at home when it's time for her to graduate high school. Her first year of life was spent in the hospital and doctor's appointments, so we get to make up that year during her teens.
So, she will go to a half-day kindergarten next year, then transition to a full-day kindergarten the following year. These are the therapies she will receive:
30 minutes, once a week, of speech therapy
30 minutes, twice a week, of deaf/hard-of-hearing therapy
30 minutes, once a week, of occupational therapy
30 minutes, once a week, of physical therapy
30 minutes, twice a week, of adapted P.E.
Some of her therapies will be pull-out (meaning they will take her out of the classroom for 1:1 time) and some of her therapies will be push-in (meaning the therapist will work with her in the classroom, which will be great for things like speech). She does not qualify for vision therapy or resource class (although she never has qualified for either of these!) Her qualifying diagnosis will remain "other health issues" as she has so many medical issues, with deaf/hard-of-hearing as a secondary diagnosis.
Another thing I was pleased with is that she qualifies for an FM system, which is a system that will have the teacher wear a microphone around her neck and the sound will transmit directly into her hearing aid. This will be great for her hearing, especially since she'll be in a noisy class with up to 25 other kids.
All in all, I am very pleased. I am beaming as I write this. My daughter is a miracle...and I can't wait to see her thrive next year in elementary school!
Why? Because all of her testing (except for gross motor skills, which we knew would be below average) shows her at the average level.
Let me back up. There were a million people present at the meeting today: the program director, school psychologist, psychologist intern, occupational therapist, physical therapist, vision therapist, deaf/hard-of-hearing therapist, speech therapist, resource specialist, two of her preschool teachers, my husband and myself. Her adapted P.E. therapist and the district nurse were unable to attend, but they had sent their reports.
Most of the people in the room had done testing on A....and as I said, everything puts her in the average range. Academically, she scored in the average range (on two separate tests!) in writing, reading and math! I couldn't believe it....her writing is average! This is the same girl who could barely draw a circle last summer. Now she is writing most of her letters. Her language is in the average range. Her IQ is average! Average is my new favorite word!
Of course, A still has a long way to go. Her gross motor skills are very behind, and she still needs a lot of work on language pragmatics (that is, talking in socialized settings, having conversations, etc). The language is IN her, we just need to help her get it out. But I know that she will get to where we want her to be. Everyone present at the IEP, without exception, talked glowingly about my daughter, about how self-motivated she is and how she continues to make progress without plateau.
Because all of her testing was average, for the first time in our IEP history the words Special Day Class wasn't even brought up! She doesn't need it! She will go to regular, general ed kindergarten next year. Luckily, our school district offers an amazing two-year kindergarten for kids born June-November, who would otherwise be the youngest kids in the class, to give them an extra year of kindergarten, an extra year of growth. This is what I am going to enroll A in....to give her the gift of an extra year. She needs an extra year of growth, both physically and language-wise. Plus, it gives her an extra year at home when it's time for her to graduate high school. Her first year of life was spent in the hospital and doctor's appointments, so we get to make up that year during her teens.
So, she will go to a half-day kindergarten next year, then transition to a full-day kindergarten the following year. These are the therapies she will receive:
30 minutes, once a week, of speech therapy
30 minutes, twice a week, of deaf/hard-of-hearing therapy
30 minutes, once a week, of occupational therapy
30 minutes, once a week, of physical therapy
30 minutes, twice a week, of adapted P.E.
Some of her therapies will be pull-out (meaning they will take her out of the classroom for 1:1 time) and some of her therapies will be push-in (meaning the therapist will work with her in the classroom, which will be great for things like speech). She does not qualify for vision therapy or resource class (although she never has qualified for either of these!) Her qualifying diagnosis will remain "other health issues" as she has so many medical issues, with deaf/hard-of-hearing as a secondary diagnosis.
Another thing I was pleased with is that she qualifies for an FM system, which is a system that will have the teacher wear a microphone around her neck and the sound will transmit directly into her hearing aid. This will be great for her hearing, especially since she'll be in a noisy class with up to 25 other kids.
All in all, I am very pleased. I am beaming as I write this. My daughter is a miracle...and I can't wait to see her thrive next year in elementary school!
September 11, 2010
Once Again, Thrown For A Loop
With the start of school this past week began A's school-based therapies. Since the school district is closed all summer, the last few months she only had physical therapy and speech therapy--both once a week--at Children's Hospital. This past week we re-started speech therapy, physical therapy, adapted physical education, and a new therapy for us: deaf/hard-of-hearing (DHH) therapy. This new therapy was added in May during her yearly IEP. (We will soon be starting occupational therapy at Children's Hospital, and possibly at school, as well. Can't have enough therapy, can we?)
I should probably give some background on A's hearing loss before I go any further. When she was in the NICU, she failed the newborn hearing screening several times. She was given further tests (the BAER and ASSR tests) and we were informed that she was deaf. As it turns out, she is not deaf, but rather deaf and hard-of-hearing. Her left ear only has a thread of an auditory nerve, so for all intents and purposes she is deaf in her left ear. However, her right ear shows a mild to moderate hearing loss, and with her hearing aid in she has normal hearing in that ear. At least that's what we've been told. I have always been grateful that she has normal hearing in one ear, with that aid in. In fact, odd as this might seem, I never really think about A as being deaf/hard-of-hearing. She seems to hear so well that I usually forget about it!
So yesterday was our first ever DHH therapy session through the school district. Last year, she did have a DHH specialist, but he was only consulting; he would come to her school to observe once a quarter, and that was about it. No therapy. I didn't even KNOW about DHH therapy back then, or I would have requested it. It was brought up during this past IEP in May for the first time, and I jumped on the opportunity to get more help for my daughter. All I knew was that it would help her "listen"....nothing more was told to me.
This particular DHH therapist was highly recommended to me when I took A for a "second opinion" audiological exam in April. They used to work together, and I was assured she is the best in the school district, which is why I requested her. That particular audiological exam upset me very much, and I really appreciated what the testers had to say.
The first thing the DHH therapist did was check her hearing aids to make sure they were working properly (they were). Then she played with A and some Fisher Price Little People, trying to get A to talk. After getting a language sample, she commented on how A is omitting certain words and sounds---all at a certain frequency. She rarely says her "s", "sh" and "ch" sounds, and even in speech she is dropping markers for certain words ("a", for example). I always assumed that she wasn't making certain sounds because of her complicating factors: not only is she hearing impaired, but she also has a paralyzed vocal cord, she had a cleft lip repair which makes her upper lip not as pliable, and the tracheostomy she had didn't let air get to her mouth.
However, the DHH said that when kids drop sounds and words like this, the first thing to be looked at is the hearing aids. She believes that they aren't programmed correctly, and that they need to be turned up in some frequencies (she is basing her opinion not only on experience, but on reading her audiological results and listening to her aids).
This upsets me to no end. You see, A has been followed by an audiologist--who I trust--since she was a few weeks old in the NICU. She gets tested (both aided and non-aided) twice a year. She also had a DHH specialist come once a month when she was in the Early Intervention program, and she had a DHH specialist last year when she aged out of Early Intervention. It's not like I've been living in a cave....we have seen many, many hearing specialists. IF what this therapist is saying is true (and we don't know yet if she's right or wrong) that means for the past four years my baby hasn't been hearing to her potential. She's been hearing well, but not well enough, not as well as she has the capability to hear.
Understandably, I am upset and angry. How can all this be missed over the past four years? However, the therapist assures me it's not too late. If the aids DO need to be adjusted, she is still young enough that her language is still forming. And she has come so far.....her vocabulary, sentence structure, use of pronouns and prepositions....everything has just blossomed this past year, and even more in the past 2 months since she got her breathing tube out. Imagine how much more she'd be doing if her hearing aids were boosted?
So, where do we go from here? The therapist is going to email our audiologist at Children's Hospital this week. If our audiologist thinks the therapist's theory has merit, we'll make an appointment to go in to get the aids reset. And, the therapist might be wrong. We'll find out soon enough. I guess it's not that big a deal, A is hearing just fine. It just galls me to think that she might be able to hear better (and therefore SPEAK better) and no one has told me until now.
This is why it is is important to ALWAYS advocate for your child...and why it's hard sometimes, when you don't know what you don't know.
I should probably give some background on A's hearing loss before I go any further. When she was in the NICU, she failed the newborn hearing screening several times. She was given further tests (the BAER and ASSR tests) and we were informed that she was deaf. As it turns out, she is not deaf, but rather deaf and hard-of-hearing. Her left ear only has a thread of an auditory nerve, so for all intents and purposes she is deaf in her left ear. However, her right ear shows a mild to moderate hearing loss, and with her hearing aid in she has normal hearing in that ear. At least that's what we've been told. I have always been grateful that she has normal hearing in one ear, with that aid in. In fact, odd as this might seem, I never really think about A as being deaf/hard-of-hearing. She seems to hear so well that I usually forget about it!
So yesterday was our first ever DHH therapy session through the school district. Last year, she did have a DHH specialist, but he was only consulting; he would come to her school to observe once a quarter, and that was about it. No therapy. I didn't even KNOW about DHH therapy back then, or I would have requested it. It was brought up during this past IEP in May for the first time, and I jumped on the opportunity to get more help for my daughter. All I knew was that it would help her "listen"....nothing more was told to me.
This particular DHH therapist was highly recommended to me when I took A for a "second opinion" audiological exam in April. They used to work together, and I was assured she is the best in the school district, which is why I requested her. That particular audiological exam upset me very much, and I really appreciated what the testers had to say.
The first thing the DHH therapist did was check her hearing aids to make sure they were working properly (they were). Then she played with A and some Fisher Price Little People, trying to get A to talk. After getting a language sample, she commented on how A is omitting certain words and sounds---all at a certain frequency. She rarely says her "s", "sh" and "ch" sounds, and even in speech she is dropping markers for certain words ("a", for example). I always assumed that she wasn't making certain sounds because of her complicating factors: not only is she hearing impaired, but she also has a paralyzed vocal cord, she had a cleft lip repair which makes her upper lip not as pliable, and the tracheostomy she had didn't let air get to her mouth.
However, the DHH said that when kids drop sounds and words like this, the first thing to be looked at is the hearing aids. She believes that they aren't programmed correctly, and that they need to be turned up in some frequencies (she is basing her opinion not only on experience, but on reading her audiological results and listening to her aids).
This upsets me to no end. You see, A has been followed by an audiologist--who I trust--since she was a few weeks old in the NICU. She gets tested (both aided and non-aided) twice a year. She also had a DHH specialist come once a month when she was in the Early Intervention program, and she had a DHH specialist last year when she aged out of Early Intervention. It's not like I've been living in a cave....we have seen many, many hearing specialists. IF what this therapist is saying is true (and we don't know yet if she's right or wrong) that means for the past four years my baby hasn't been hearing to her potential. She's been hearing well, but not well enough, not as well as she has the capability to hear.
Understandably, I am upset and angry. How can all this be missed over the past four years? However, the therapist assures me it's not too late. If the aids DO need to be adjusted, she is still young enough that her language is still forming. And she has come so far.....her vocabulary, sentence structure, use of pronouns and prepositions....everything has just blossomed this past year, and even more in the past 2 months since she got her breathing tube out. Imagine how much more she'd be doing if her hearing aids were boosted?
So, where do we go from here? The therapist is going to email our audiologist at Children's Hospital this week. If our audiologist thinks the therapist's theory has merit, we'll make an appointment to go in to get the aids reset. And, the therapist might be wrong. We'll find out soon enough. I guess it's not that big a deal, A is hearing just fine. It just galls me to think that she might be able to hear better (and therefore SPEAK better) and no one has told me until now.
This is why it is is important to ALWAYS advocate for your child...and why it's hard sometimes, when you don't know what you don't know.
May 27, 2010
IEP Time!
Monday we had A's second IEP. Ours is an annual IEP (reviewed throughout the year) but this was the big one with a million people crowded around a small table discussing my daughter. Last year I was very nervous for the IEP, but this year I knew what to expect, so I wasn't nearly as nervous.
Just like last year, we had tons of people present: the school psychologist, the program director, her speech therapist, her adapted PE teacher, her deaf/hard-of-hearing (DHH) specialist, the vision specialist who assessed her at my request, the resource specialist, the district nurse, A's preschool teacher, the preschool director, a school psychology intern, my husband, and myself. The only person missing was her physical therapist, who couldn't be there but sent her reports and new goals. Whew!
As I expected, all of the reports were glowing. A has met, and in most cases surpassed, almost all of the goals set for her last year. Now that she is fully walking, she has blown her PT and P.E. goals out of the water. And she has progressed very well with her language. Articulation remains hard for her, as she has the trach, paralyzed vocal chord, and scar where her cleft lip was repaired to contend with, but it's getting better. She is bright, and again didn't even qualify for a resource class: she knows her colors, shapes, capital letters, some lowercase letters, can count by rote to 11, can count objects, etc. All in all, she is doing fantastic.
The team decided to keep the same services she is already receiving (two hours a week of speech therapy, an hour of week of adapted p.e., and half an hour a week of physical therapy). However, they are adding a new service: half an hour a week of DHH therapy, which I think is learning more how to listen, which is great for her hearing loss. I am pleased.
Here is what I am not pleased with: once again, like last year, the team recommended a Special Day Class (SDC). Why? They gave me two reasons:
1) If she goes to an SDC, all of her services will come to her in one place. Right now they are splintered, meaning that I am taking her to different places every day to receive the services. But really? I don't care. This is my JOB. I am a stay-at-home mom for a reason; I truly don't mind driving her about town.
2) They say that the SDC is a very language-rich class, with teachers who work with kids with needs. However, A goes to preschool already, in an inclusion program, and I believe THAT school is also language-rich (and hey, what preschool class ISN'T language-rich, anyway!?!?) And because it's an inclusion program, the teachers there are trained to work with kids with various needs.
3) They didn't list this as a reason, but I believe that they HAVE to offer a SDC to cover their butts. They don't want me, as a parent, to come back in 5 years if A isn't doing well at school and ask why they didn't offer an SDC in preschool. They have to have a paper trail showing that it was all offered.
There is nothing wrong with an SDC. I have some friends here in real life whose kids go to an SDC, and I know I have many anonymous readers whose kids do too. However, I don't feel it's the best placement for A. She needs to be around typically-developing kids; she is one of those kids who will rise to whatever challenge is posed to her. And cognitively she is right where she should be: all of her test scores, from IQ to language, put her in the average range.
The preschool where my son D went, which was through our synagogue, wouldn't have been the right fit. It was too academic and they couldn't handle anyone with needs. An SDC isn't right either; I need A to be with kids at or above her level, rather than at or below. We have found the perfect school; the inclusion program means that the majority of the students are typically developing, but they take a few kids with needs of various types, and the teachers are trained in how to adapt to the needs. A is getting the best of both worlds.
So, we declined (once again) the offer of an SDC. She will continue at her current preschool, but this time 3 days a week instead of 2, and will receive all of the above-named school services. We will also continue to get PT and speech therapy privately at Children's Hospital, and do horse therapy as we've been doing for the past 2 years. And next year we'll have more free time, so we can do a ballet class, or soccer, or gymnastics.
All in all, it was a great IEP. I am so proud of A and it was great to hear so many wonderful things about her! I hope we are making the right choice for her, given my fears last month, but I truly think we are. After the IEP, her therapists all came up to me and told me they agreed with me. And we can always reassess if I think that A is falling behind. But knowing my daughter, she won't be!
Just like last year, we had tons of people present: the school psychologist, the program director, her speech therapist, her adapted PE teacher, her deaf/hard-of-hearing (DHH) specialist, the vision specialist who assessed her at my request, the resource specialist, the district nurse, A's preschool teacher, the preschool director, a school psychology intern, my husband, and myself. The only person missing was her physical therapist, who couldn't be there but sent her reports and new goals. Whew!
As I expected, all of the reports were glowing. A has met, and in most cases surpassed, almost all of the goals set for her last year. Now that she is fully walking, she has blown her PT and P.E. goals out of the water. And she has progressed very well with her language. Articulation remains hard for her, as she has the trach, paralyzed vocal chord, and scar where her cleft lip was repaired to contend with, but it's getting better. She is bright, and again didn't even qualify for a resource class: she knows her colors, shapes, capital letters, some lowercase letters, can count by rote to 11, can count objects, etc. All in all, she is doing fantastic.
The team decided to keep the same services she is already receiving (two hours a week of speech therapy, an hour of week of adapted p.e., and half an hour a week of physical therapy). However, they are adding a new service: half an hour a week of DHH therapy, which I think is learning more how to listen, which is great for her hearing loss. I am pleased.
Here is what I am not pleased with: once again, like last year, the team recommended a Special Day Class (SDC). Why? They gave me two reasons:
1) If she goes to an SDC, all of her services will come to her in one place. Right now they are splintered, meaning that I am taking her to different places every day to receive the services. But really? I don't care. This is my JOB. I am a stay-at-home mom for a reason; I truly don't mind driving her about town.
2) They say that the SDC is a very language-rich class, with teachers who work with kids with needs. However, A goes to preschool already, in an inclusion program, and I believe THAT school is also language-rich (and hey, what preschool class ISN'T language-rich, anyway!?!?) And because it's an inclusion program, the teachers there are trained to work with kids with various needs.
3) They didn't list this as a reason, but I believe that they HAVE to offer a SDC to cover their butts. They don't want me, as a parent, to come back in 5 years if A isn't doing well at school and ask why they didn't offer an SDC in preschool. They have to have a paper trail showing that it was all offered.
There is nothing wrong with an SDC. I have some friends here in real life whose kids go to an SDC, and I know I have many anonymous readers whose kids do too. However, I don't feel it's the best placement for A. She needs to be around typically-developing kids; she is one of those kids who will rise to whatever challenge is posed to her. And cognitively she is right where she should be: all of her test scores, from IQ to language, put her in the average range.
The preschool where my son D went, which was through our synagogue, wouldn't have been the right fit. It was too academic and they couldn't handle anyone with needs. An SDC isn't right either; I need A to be with kids at or above her level, rather than at or below. We have found the perfect school; the inclusion program means that the majority of the students are typically developing, but they take a few kids with needs of various types, and the teachers are trained in how to adapt to the needs. A is getting the best of both worlds.
So, we declined (once again) the offer of an SDC. She will continue at her current preschool, but this time 3 days a week instead of 2, and will receive all of the above-named school services. We will also continue to get PT and speech therapy privately at Children's Hospital, and do horse therapy as we've been doing for the past 2 years. And next year we'll have more free time, so we can do a ballet class, or soccer, or gymnastics.
All in all, it was a great IEP. I am so proud of A and it was great to hear so many wonderful things about her! I hope we are making the right choice for her, given my fears last month, but I truly think we are. After the IEP, her therapists all came up to me and told me they agreed with me. And we can always reassess if I think that A is falling behind. But knowing my daughter, she won't be!
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