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.
Showing posts with label deaf. Show all posts
Showing posts with label deaf. Show all posts
December 20, 2011
May 29, 2011
Why I Love "American Idol"
Another season of "American Idol" ended this week. I love the show, and have watched it from almost the very beginning (I started watching toward the end of Season 1). Some seasons are boring and hard to watch, but this year was fun and exciting for me. I was super-sad that James Durbin got eliminated, as I thought he should have gone all the way.
I am a huge music fan, and enjoy the contestants' twists on songs I love. I also love the "rags to riches" stories of everyday people getting discovered. Some winners have faded into oblivion (did we ever really expect to hear from Taylor Hicks again?) but some have become super-stars, like Kelly Clarkson and Carrie Underwood. And many, many contestants that didn't take the top prize have done very well. I am a huge Adam Lambert fan, and also love Chris Doughtry.
But there's another reason I love the show. There have been many contestants with various disabilities and challenges, many of which my own daughter, A, struggles with. For example:
Truly inspiring. My daughter will accomplish the same. You may never see her in a recording studio (but who knows!) but I can promise you she will acheive great things. She can do whatever she wants to do.
I am a huge music fan, and enjoy the contestants' twists on songs I love. I also love the "rags to riches" stories of everyday people getting discovered. Some winners have faded into oblivion (did we ever really expect to hear from Taylor Hicks again?) but some have become super-stars, like Kelly Clarkson and Carrie Underwood. And many, many contestants that didn't take the top prize have done very well. I am a huge Adam Lambert fan, and also love Chris Doughtry.
But there's another reason I love the show. There have been many contestants with various disabilities and challenges, many of which my own daughter, A, struggles with. For example:
- Season 8's Scott MacIntyre is blind. Now my daughter isn't blind, but she is a severe vision impairment. She has colobomas in both eyes (gaps on her optic nerves) giving her gaps in her fields of vision.
- Season 4's Anthony Federov had a trachestomy as a child...just like my daughter.
- Season 7's David Archuleta had a paralyzed vocal cord, just like my daughter. His paralysis resolved, while my daughter's hasn't.
- Season 5's Elliot Yamin is 90% deaf in his right ear. My daughter is deaf/hard-of-hearing in both of her ears. By the way, Elliot also has diabetes and is insulin-dependent!
- Season 10's James Durbin has both Asperger's Syndrome and Tourette's Syndrome. My daughter has neither, but I am still so impressed he overcame these challenges to finish in fourth place this season!
Truly inspiring. My daughter will accomplish the same. You may never see her in a recording studio (but who knows!) but I can promise you she will acheive great things. She can do whatever she wants to do.
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!
January 27, 2011
Hit Again With The Truth
I don't know why I was surprised to learn today (once again) that A is deaf in her left ear. I've known that fact practically since she was born.
I think that because A is doing so well, I forget sometimes that she has medical complications. Because she seems to see ok, I forget that she has fields of vision missing, due to her colobomas. Because she is talking so much, and even recently tested within normal range on an articulation test, I forget that she has a paralyzed vocal cord and other factors that led to speech delay. Because she is walking so well now, I forget that she has no semicircular canals.
And because she seems to hear so well (in fact, is aided to about normal hearing in her right ear) I forget that she is deaf in her left ear.
Today we had an audiology appointment at Children's Hospital. We usually go there twice a year, and do both aided (with hearing aids) and unaided tests. Today was an aided test. We went into the sound-proof booth, and first tested her right ear, which is her "good" ear. Our audiologist noticed that she wasn't responding to some frequencies as well as she used to, and made a minor adjustment to the hearing aid. After re-testing, A was responding to almost all of the frequencies. I was happy the adjustment was made; now A will be hearing even better.
We then tested her left ear. We have not tested her left ear, aided, in quite a while. An MRI done when A was a baby showed that she has no auditory nerve in that ear, but early testing did show SOME response (albeit in the profound range, but still) in some frequencies. We have always put a hearing aid on her left ear, because frankly no one can tell us what she is hearing except for her...and she doesn't have that cognition and language capability yet. After all, she is only 4 years old.
To test her left ear, we took out the hearing aid from her right ear and masked the ear. This means that the audiologist inserted a small bud in her right ear that made white noise. Because of the white noise in her right ear, she would only hear out of her left ear (otherwise, sound that is meant for her left ear could also be heard by her right). The audiologist then played some sounds to see how A would respond.
No response.
The audiologist turned up the volume. It was loud. In fact, the sounds were so loud that she asked me if I wanted a headphone for myself to block it out (I declined, although it was loud enough to hurt my ears).
Still nothing. Nada.
I sat there, with A in my lap, quietly crying. This test showed that there was NO hearing in her left ear, not even at a profoundly deaf level.
Again, I'm not surprised. We've known she was deaf in that ear for a long time. In fact, when she first failed her hearing tests in the NICU we were told that she was deaf in both ears...so the fact that she is aided to normal hearing in one ear is a blessing that I don't take for granted. And apparently she is hearing all parts of speech, something that we were concerned with, so that makes me extra happy.
Yet it's still hard to be confronted with.
I think that because A is doing so well, I forget sometimes that she has medical complications. Because she seems to see ok, I forget that she has fields of vision missing, due to her colobomas. Because she is talking so much, and even recently tested within normal range on an articulation test, I forget that she has a paralyzed vocal cord and other factors that led to speech delay. Because she is walking so well now, I forget that she has no semicircular canals.
And because she seems to hear so well (in fact, is aided to about normal hearing in her right ear) I forget that she is deaf in her left ear.
Today we had an audiology appointment at Children's Hospital. We usually go there twice a year, and do both aided (with hearing aids) and unaided tests. Today was an aided test. We went into the sound-proof booth, and first tested her right ear, which is her "good" ear. Our audiologist noticed that she wasn't responding to some frequencies as well as she used to, and made a minor adjustment to the hearing aid. After re-testing, A was responding to almost all of the frequencies. I was happy the adjustment was made; now A will be hearing even better.
We then tested her left ear. We have not tested her left ear, aided, in quite a while. An MRI done when A was a baby showed that she has no auditory nerve in that ear, but early testing did show SOME response (albeit in the profound range, but still) in some frequencies. We have always put a hearing aid on her left ear, because frankly no one can tell us what she is hearing except for her...and she doesn't have that cognition and language capability yet. After all, she is only 4 years old.
To test her left ear, we took out the hearing aid from her right ear and masked the ear. This means that the audiologist inserted a small bud in her right ear that made white noise. Because of the white noise in her right ear, she would only hear out of her left ear (otherwise, sound that is meant for her left ear could also be heard by her right). The audiologist then played some sounds to see how A would respond.
No response.
The audiologist turned up the volume. It was loud. In fact, the sounds were so loud that she asked me if I wanted a headphone for myself to block it out (I declined, although it was loud enough to hurt my ears).
Still nothing. Nada.
I sat there, with A in my lap, quietly crying. This test showed that there was NO hearing in her left ear, not even at a profoundly deaf level.
Again, I'm not surprised. We've known she was deaf in that ear for a long time. In fact, when she first failed her hearing tests in the NICU we were told that she was deaf in both ears...so the fact that she is aided to normal hearing in one ear is a blessing that I don't take for granted. And apparently she is hearing all parts of speech, something that we were concerned with, so that makes me extra happy.
Yet it's still hard to be confronted with.
January 13, 2011
My Daughter Continues To Amaze
Today I got news about A that blew me away. Not that I should be surprised...my daughter has constantly been amazing me with how she exceeds every expectation, whether it's with her gross motor skills, fine motor skills, or medical issues.
This time, the news was about her speech.
To give some background, A has had a lot of things going against her in terms of her speech. Specifically:
1) She was born with a bilateral cleft lip. While this was repaired at 7 months old (so well, by the way, that you have to look closely to see the scar) she has minimal movement on her upper lip. I think with the scars there her upper lip just isn't as pliable as it should be, which of course affects the production of certain sounds.
2) She is deaf/hard-of-hearing. She didn't get hearing aids until she was 6 months old, so she has always been 6 months behind in her "hearing age". And there may be some sounds that even with the hearing aids in she can't hear very well. Obviously, if you can't hear a sound, you can't reproduce it.
3) She has a paralyzed vocal fold.
4) Up until this past July, she had a tracheostomy, which affected speech production because a lot of air would come out of her stoma. Even though she's been trach-free for 6 months, some of these sounds ("f", "s", and other airy sounds) are just now coming in.
So, clearly, speech has always been an issue for her. We started speech therapy at Children's Hospital when she was only 11 months old. Back then, the goal was to get her to use sign language to communicate, as she was unable to make many sounds at that point. Eventually, she started to sign, and then speak. In fact, most of her signs have dropped now; she is pretty very verbal now, only using sign language once in a while to get her point across. Last year, she started speech therapy through the school district, per her IEP. Between getting two hours a week of school-based speech therapy, and one hour a week of speech therapy at the hospital, she's done a lot of intensive work. The hospital therapist mainly works on articulation, and the school therapist mainly works on language.
This past Monday, our private speech therapist did some testing on her (the Goldman-Fristoe test of articulation). Today she called me with the results:
A's speech sounds are within normal range.
Yes, you read that correctly. My baby, for whom speech has been such an issue, is within normal range for speech articulation!
There are still a lot of sounds she has trouble with, like "s" blends ("sh", "sl", etc). But our therapist said that for a lot of children these sounds don't even come in until age 6 or so. A is only 4 1/2! And she thinks that once A gets her stoma closed, which should be this coming June, even more sounds will improve. So, for all intents and purposes, A's articulation is within normal range, even though she still has work to do.
A's speech therapy is approved with our insurance only through the end of January. Our therapist suggested that we continue to see her for the next few weeks, and then take a voluntary break. We can then have A reassessed in 6 months. If she needs to come back, we'll submit the paperwork with insurance. If she doesn't need to come back, all the better.
I feel ok about this. This is just like her ending the hospital-based physical therapy in December: while she still has work to do with her gross motor skills, she is doing well enough to end, and is still receiving PT through school, plus adapted P.E., horse therapy, and now ballet, tap and gymnastics. She is still DOING physical things. With speech, she will still be getting 2 hours a week of speech therapy through school. And there are language building activities we can do at home. We talk all the time, so this is never-ending.
I cannot believe that A will be done with speech therapy at Children's Hospital! Having done it weekly for the past 3 1/2 years, it doesn't seem real. But discontinuing is bringing us one step ever closer to making her as typical as possible.
This time, the news was about her speech.
To give some background, A has had a lot of things going against her in terms of her speech. Specifically:
1) She was born with a bilateral cleft lip. While this was repaired at 7 months old (so well, by the way, that you have to look closely to see the scar) she has minimal movement on her upper lip. I think with the scars there her upper lip just isn't as pliable as it should be, which of course affects the production of certain sounds.
2) She is deaf/hard-of-hearing. She didn't get hearing aids until she was 6 months old, so she has always been 6 months behind in her "hearing age". And there may be some sounds that even with the hearing aids in she can't hear very well. Obviously, if you can't hear a sound, you can't reproduce it.
3) She has a paralyzed vocal fold.
4) Up until this past July, she had a tracheostomy, which affected speech production because a lot of air would come out of her stoma. Even though she's been trach-free for 6 months, some of these sounds ("f", "s", and other airy sounds) are just now coming in.
So, clearly, speech has always been an issue for her. We started speech therapy at Children's Hospital when she was only 11 months old. Back then, the goal was to get her to use sign language to communicate, as she was unable to make many sounds at that point. Eventually, she started to sign, and then speak. In fact, most of her signs have dropped now; she is pretty very verbal now, only using sign language once in a while to get her point across. Last year, she started speech therapy through the school district, per her IEP. Between getting two hours a week of school-based speech therapy, and one hour a week of speech therapy at the hospital, she's done a lot of intensive work. The hospital therapist mainly works on articulation, and the school therapist mainly works on language.
This past Monday, our private speech therapist did some testing on her (the Goldman-Fristoe test of articulation). Today she called me with the results:
A's speech sounds are within normal range.
Yes, you read that correctly. My baby, for whom speech has been such an issue, is within normal range for speech articulation!
There are still a lot of sounds she has trouble with, like "s" blends ("sh", "sl", etc). But our therapist said that for a lot of children these sounds don't even come in until age 6 or so. A is only 4 1/2! And she thinks that once A gets her stoma closed, which should be this coming June, even more sounds will improve. So, for all intents and purposes, A's articulation is within normal range, even though she still has work to do.
A's speech therapy is approved with our insurance only through the end of January. Our therapist suggested that we continue to see her for the next few weeks, and then take a voluntary break. We can then have A reassessed in 6 months. If she needs to come back, we'll submit the paperwork with insurance. If she doesn't need to come back, all the better.
I feel ok about this. This is just like her ending the hospital-based physical therapy in December: while she still has work to do with her gross motor skills, she is doing well enough to end, and is still receiving PT through school, plus adapted P.E., horse therapy, and now ballet, tap and gymnastics. She is still DOING physical things. With speech, she will still be getting 2 hours a week of speech therapy through school. And there are language building activities we can do at home. We talk all the time, so this is never-ending.
I cannot believe that A will be done with speech therapy at Children's Hospital! Having done it weekly for the past 3 1/2 years, it doesn't seem real. But discontinuing is bringing us one step ever closer to making her as typical as possible.
September 27, 2010
Some Assembly Required
When my daughter, A, now age 4, came home from twelve weeks in the NICU, she also came home with a g-tube (feeding tube) in her tummy. It came with a lot of equipment (pump, bags, IV pole, syringes, etc) and required a lot of care (cleaning the site, putting gauze around it to soak up leakage, etc). My mother remarked that A came with "some assembly required".
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
September 16, 2010
How Music Proved Medicine Wrong
A friend of mine on Twitter, Barbara, posted on her blog that she is having a "blog carnival". She challenged her friends to write a post "about the place of music in the life of your child." This is a no-brainer to me; music plays such a big part in my life, and the life of my two children. I could easily write a post about how much we love music; about the Mommy-and-Me music classes I've taken with both kids; about how I rarely play "kid" music in the car but instead play them "Mama music" to expose them to what I love to listen to; or about how soon I'll be starting D with some kind of music lessons, perhaps on piano or guitar.
Instead, however, I will write about how music let me know that my daughter, A, isn't completely deaf.
As I wrote about earlier this week, A has profound hearing loss (is practically deaf) in her left ear, and has mild-to-moderate hearing loss in her right ear (she has normal hearing in her right ear with her hearing aid). When she was in the NICU for 12 weeks, she failed her newborn test. She then had further testing (the BAER and the ASSR) and we were told by the audiology department that she was completely deaf.
This not only devastated me, but confused me. You see, not only did A seem to respond to my voice, but she also seemed to respond to music. I had brought in a portable CD player, and would play her music every morning and every evening. Some of the music was classical music from the Baby Einstein series, but I most often played her my favorite band--the Beatles--in the form of a CD called "Bedtime with the Beatles" which was instrumental versions of Beatles songs. She always seemed to respond when I put the music on.
When I told the audiologist this, she responded that A probably felt the vibrations from the CD player, and that was what she was responding too. But I knew better. The CD wasn't in her bassinet; it was on the counter behind the bed. She couldn't feel the vibrations. I KNEW, in my heart, that she heard the music, at whatever level she was able to hear. I just knew she wasn't 100% deaf.
Of course, further testing showed that I was right. She WAS hearing the music. Music was the key to me advocating for further testing. To this day, A loves music. Every time a new song comes on the radio she asks what the title is. She likes to "dance" to the rhythm in her carseat. She enjoys banging on our piano and playing on our child-sized drum set. I am so glad that A can hear, because I get to share with her one of my greatest pleasures in life: the joy of music.
Instead, however, I will write about how music let me know that my daughter, A, isn't completely deaf.
As I wrote about earlier this week, A has profound hearing loss (is practically deaf) in her left ear, and has mild-to-moderate hearing loss in her right ear (she has normal hearing in her right ear with her hearing aid). When she was in the NICU for 12 weeks, she failed her newborn test. She then had further testing (the BAER and the ASSR) and we were told by the audiology department that she was completely deaf.
This not only devastated me, but confused me. You see, not only did A seem to respond to my voice, but she also seemed to respond to music. I had brought in a portable CD player, and would play her music every morning and every evening. Some of the music was classical music from the Baby Einstein series, but I most often played her my favorite band--the Beatles--in the form of a CD called "Bedtime with the Beatles" which was instrumental versions of Beatles songs. She always seemed to respond when I put the music on.
When I told the audiologist this, she responded that A probably felt the vibrations from the CD player, and that was what she was responding too. But I knew better. The CD wasn't in her bassinet; it was on the counter behind the bed. She couldn't feel the vibrations. I KNEW, in my heart, that she heard the music, at whatever level she was able to hear. I just knew she wasn't 100% deaf.
Of course, further testing showed that I was right. She WAS hearing the music. Music was the key to me advocating for further testing. To this day, A loves music. Every time a new song comes on the radio she asks what the title is. She likes to "dance" to the rhythm in her carseat. She enjoys banging on our piano and playing on our child-sized drum set. I am so glad that A can hear, because I get to share with her one of my greatest pleasures in life: the joy of music.
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.
June 29, 2010
I Didn't Know What I Didn't Know
Tomorrow my precious daughter, A, turns 4.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
April 28, 2010
Never Doing Enough
I had intended to write about my family's amazing trip to Disneyland, which we took this week....but that will have to wait for another time. Instead, tonight I am feeling down.
I feel like I am not doing enough for A. I feel like I'm failing her.
I know, I know....anyone reading this will protest. And in reality, I know that I am doing all I can. But right now, I'm feeling like I'm coming up short.
Today we had an audiological assessment paid for by the school district. We see an audiologist twice a year at Children's Hospital, where we get both aided and unaided hearing tests. However, apparently A's IEP states that the school district will pay for her to get assessed once a year by a private audiologist. One name on the provider list was an audiologist I had heard great things about, so I jumped at the chance to get a free second opinion by someone well-recommended.
It was a great assessment. A did fantastic, and performed really well. The tests showed the same thing as all her previous tests at Children's Hospital showed...profound hearing loss in her left ear, and moderate hearing loss in her right ear. She is aided-to-normal (or just about normal) in her right ear, which is such a blessing. After the assessment, the audiologist and I sat down to talk about A and her needs.
The doctor indicated that A has the potential to fall through the cracks. She is bright, and can hear, and is now talking. Because of this, someone may look at her and think she is doing okay. The truth is, she has a major language delay (not just articulation, but expressive and receptive). This is due to many factors: she has hearing loss; she has a tracheostomy; she has a paralyzed vocal fold; she had a cleft lip, which means that where is was repaired may be stiff and not as pliable for movement; and she spent the first years of her life using a feeding tube, meaning that her tongue and oral motor skills were not developed. She has a lot of work yet to do to get her language to where it needs to be. She said that kids that don't build a solid language foundation (not just vocabulary, but concepts, etc) risk having trouble when it comes to third or fourth grade, when more is expected of their reading, cognitive, and reasoning skills, for example.
The doctor asked me what services are being provided (per her IEP). I responded that she is getting speech therapy, physical therapy, and adapted P.E. (she did not qualify for resource this past year). I AM having her reassessed for resource before her next IEP (which is next month) and also having her assessed by a vision therapist...I just wanted to make sure I was dotting my i's and crossing my t's so to speak. I would hate for A to qualify for something but not receive services because I hadn't requested an evaluation! However, the audiologist today said that maybe there were some services that I don't know about that I can look into.
Huh? There is something else? As my husband said to me tonight, you don't know what you don't know. And it scares me that maybe I don't know of service to request...something that may possibly help my daughter further.
She also asked me if A's speech therapists (and she has two: she gets 2 hours of group therapy through the school district, and half an hour of one-on-one therapy through our private insurance) give me homework to do with A at home. Umm....no. And they should, now that I think about it. I need to be doing more at home to boost A's language. And because I am not a speech and language therapist, and because no one gives me work to do at home, I don't know what to do so I do nothing. Just our usual talking....but no "work".
So I feel like I'm failing A. Partly because I'm not doing extra speech and language work at home, and partly because maybe there is more help for her out there that I don't know about. The thing is, failure is not an option. A is thriving, flourishing, and doing better than I had ever dared to dream. She is a miracle. I will not let her fail. I will advocate for her and push for her and fight for her. I just need to know what I am advocating, pushing and fighting for. I need more tools, and need to know more of what is out there for us.
I feel like I am not doing enough for A. I feel like I'm failing her.
I know, I know....anyone reading this will protest. And in reality, I know that I am doing all I can. But right now, I'm feeling like I'm coming up short.
Today we had an audiological assessment paid for by the school district. We see an audiologist twice a year at Children's Hospital, where we get both aided and unaided hearing tests. However, apparently A's IEP states that the school district will pay for her to get assessed once a year by a private audiologist. One name on the provider list was an audiologist I had heard great things about, so I jumped at the chance to get a free second opinion by someone well-recommended.
It was a great assessment. A did fantastic, and performed really well. The tests showed the same thing as all her previous tests at Children's Hospital showed...profound hearing loss in her left ear, and moderate hearing loss in her right ear. She is aided-to-normal (or just about normal) in her right ear, which is such a blessing. After the assessment, the audiologist and I sat down to talk about A and her needs.
The doctor indicated that A has the potential to fall through the cracks. She is bright, and can hear, and is now talking. Because of this, someone may look at her and think she is doing okay. The truth is, she has a major language delay (not just articulation, but expressive and receptive). This is due to many factors: she has hearing loss; she has a tracheostomy; she has a paralyzed vocal fold; she had a cleft lip, which means that where is was repaired may be stiff and not as pliable for movement; and she spent the first years of her life using a feeding tube, meaning that her tongue and oral motor skills were not developed. She has a lot of work yet to do to get her language to where it needs to be. She said that kids that don't build a solid language foundation (not just vocabulary, but concepts, etc) risk having trouble when it comes to third or fourth grade, when more is expected of their reading, cognitive, and reasoning skills, for example.
The doctor asked me what services are being provided (per her IEP). I responded that she is getting speech therapy, physical therapy, and adapted P.E. (she did not qualify for resource this past year). I AM having her reassessed for resource before her next IEP (which is next month) and also having her assessed by a vision therapist...I just wanted to make sure I was dotting my i's and crossing my t's so to speak. I would hate for A to qualify for something but not receive services because I hadn't requested an evaluation! However, the audiologist today said that maybe there were some services that I don't know about that I can look into.
Huh? There is something else? As my husband said to me tonight, you don't know what you don't know. And it scares me that maybe I don't know of service to request...something that may possibly help my daughter further.
She also asked me if A's speech therapists (and she has two: she gets 2 hours of group therapy through the school district, and half an hour of one-on-one therapy through our private insurance) give me homework to do with A at home. Umm....no. And they should, now that I think about it. I need to be doing more at home to boost A's language. And because I am not a speech and language therapist, and because no one gives me work to do at home, I don't know what to do so I do nothing. Just our usual talking....but no "work".
So I feel like I'm failing A. Partly because I'm not doing extra speech and language work at home, and partly because maybe there is more help for her out there that I don't know about. The thing is, failure is not an option. A is thriving, flourishing, and doing better than I had ever dared to dream. She is a miracle. I will not let her fail. I will advocate for her and push for her and fight for her. I just need to know what I am advocating, pushing and fighting for. I need more tools, and need to know more of what is out there for us.
January 23, 2010
My daughter's medical issues
I don't want this blog to be entirely about my miraculous daughter (although believe me, she gives me enough material to do so!) However, I would be remiss if I didn't list her medical issues. I don't know who might be reading this, and for those of you who don't know me personally, you might want to know what we, and our daughter, A, have been dealing with for the last 3 1/2 years.
Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.
A's list of medical issues:
1) bilateral cleft lip (repaired February 2007)
2) patent ductus arterious (heart defect) (repaired July 2006)
3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)
4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)
5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)
6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)
7) cochleas in both ears missing a spiral
8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)
9) just a thread of an auditory nerve in her left ear
10) right aortic arch (yes, her aorta arches to the right, not the left!)
11) paralyzed vocal chord
12) tracheomalacia (seems to have resolved)
13) very narrow airway
14) paraesophageal hernia
15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)
16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)
17) cleft in her upper right gum
18) extra upper tooth (!)
19) low muscle tone
20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)
Keep in mind that I had a healthy pregnancy; nothing showed up on the ultrasound I had; and that I had a planned c-section at 38 weeks. I went in expecting a healthy baby girl, and was in for the shock of my life. She was born in June, 2006. She was in the NICU for almost 12 weeks, then home finally for 7 weeks, then back in the hospital for another 4 weeks while she got her tracheostomy. Amazingly, we have been out of the hospital (in-patient wise) ever since, except for a one day stay when we got her lip repaired.
A's list of medical issues:
1) bilateral cleft lip (repaired February 2007)
2) patent ductus arterious (heart defect) (repaired July 2006)
3) vascular ring (vessel wrapped around her esophagus and trachea) (repaired July 2006)
4) bilateral frontal lobe infarcts (she had a prenatal stroke; amazingly, there seems to be no visible effects from it!!!)
5) bilateral coloboma (gaps in her eyes, on her optic nerve; severely limits vision in her left eye and seems mild vision limits in her right eye)
6) bilateral hearing loss (profoundly deaf in her left ear, mild-to- moderately deaf in her right ear) (aided to normal hearing in her right ear with hearing aids)
7) cochleas in both ears missing a spiral
8) missing all semi-circular canals in both ears (you are supposed to have 3 in each, a total of 6; this affects balance)
9) just a thread of an auditory nerve in her left ear
10) right aortic arch (yes, her aorta arches to the right, not the left!)
11) paralyzed vocal chord
12) tracheomalacia (seems to have resolved)
13) very narrow airway
14) paraesophageal hernia
15) feeding issues at birth leading to placement of a g-tube (feeding tube) in August 2006 (removed July 2010)
16) breathing issues, including a stridor, since birth leading to the placement of a tracheostomy (breathing tube) in November 2006 (tracheostomy removed July 2010)
17) cleft in her upper right gum
18) extra upper tooth (!)
19) low muscle tone
20) acid reflux, leading to a fundoplication (surgery done July 2006 and re-done November 2006)
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