After 2 months and multiple tries, the Fragile X test results finally came back. And they are normal. So now we just wait to see what the developmental ped says, but it will take another 6 months to get in there anyway, so we are back to waiting. The next 3 months will be spent getting ready for IEP transition.
Yesterday at church, Sweets was sort of playing along side another little girl. The other girl was a lot bigger than Sweets and was talking in easily understood complete sentences. I asked her mom how old she was, and it turns out she is only 2 months older than Sweets. Wow. When I said that to the mom, she asked right away, "Do you know what she has?" So I guess it was obvious to her that Sweets must "have" something. I think that might have been the first time someone has asked me something like that. I wasn't offended or anything, and I told her about the different tests we've done and how she doesn't have any of those things anyway, but we don't know what it is. I guess it just surprised me a little, and made me realize how behind she is. Sometimes it's hard to tell because she goes to the developmental preschool now, so a lot of those kids are delayed too. And a lot of them are delayed a lot more than Sweets. I don't have a good frame of reference for "typical" anymore.
Starting this month, we are getting ready for "transition" from early intervention to the school system program. We have our "intake" meeting next Friday. They are going to screen and evaluate Sweets after that, and I'm going to take her to some independent evals as well for backup. I've been wondering lately whether she will even qualify for IEP. She has to be 30% delayed to qualify, which is a whole year behind at 3 years old. Is she a whole year behind? I don't know. I really have no idea how far behind she is at this point, because I don't know what is typical for comparison.
I've been worried that she won't qualify, and that she will lose services. Not that I want her to be more delayed, but I do want her to keep her services. One person told me that even if she does qualify, she'd only get 1x30 minutes of speech, where she gets 2x45 right now. Another parent told me that she didn't think her son was going to qualify, but he did, and he is still getting 2x45 though, so I know it is possible. I am not sure if the school evaluation will be biased against providing services, because that way they don't have to pay for them. Or maybe that's just pessimistic of me. In any case, we are doing outside evals too. I know that I can challenge their evals if they come back saying she doesn't qualify, if I have one that says she does. I also just like having a second opinion.
So, we are going tomorrow for a speech eval at NC eye and ear, and we have another speech eval booked in Feb at Duke. I'd like to have a cognitive eval done on her too, but I don't really know where to go for that yet, besides the developmental ped that we can't get into for several more months. I thought that the school was going to do that one, but they said they are doing an "educational" eval, not a "cognitive" one. And I don't even know the difference.
I feel like I don't really understand as much as I'd like about this process, though I've read everything they've given me on it. I feel like in the past I saw lots of IEP workshops being offered, and I didn't go because it seemed so far away. Now that I want to go, I can't find any.
Monday, January 9, 2012
Wednesday, November 16, 2011
Fragile X testing
The results of the Fragile X test were supposed to be in after 2 weeks, so I called to find out if they were back. They told me that the test they had done here at Duke was inconclusive, and they needed to send the sample out to the Mayo Clinic to do a different test. So it will be another 2 weeks before we get the results back.
The test they did here was the PCR. It looks for the normal copy number of repeats, which is around 30. (Fragile X is caused by having too many repeats in this region: around 30 would be normal, above 200 would be Fragile X) Since Sweets is a girl, and girls have two X chromosomes, they are looking for two bands on the PCR in the normal range. So they might see a 28 and a 30 on a normal girl. But on Sweets they only saw one band.
That doesn't necessarily mean she has Fragile X. She could just have the same number of copies on both chromosomes. If both of her chromosomes had 30 repeats, then they would just see one band at 30 - they can't separate the chromosomes. They can't tell from this test if they are seeing one chromosome's 30 or two chromosome's 30's. Two chromosomes with 30 repeats would still be normal.
If she has Fragile X, then it would only show one 30, so that is still a possibility. In that case, she might have one 30 and one 400, but the 400 is too big to show up on this test apparently. They can only see the repeats in the normal range. So, they have to do another test on her sample that can also see the big repeats, called a Southern Blot. The Southern Blot is a radioactive assay, and not a lot of places do them anymore, so that's why the sample had to be sent to Mayo for this test.
It's all the waiting that kills me really. It feels like this whole process is hurry-up-and-wait. Let's test her for this, wait months for the appointment, then wait again for the results, then when they are negative move on to the next thing and repeat. It makes the whole process take a very long time when we have to wait months between appointments. And the more specialized the docs, the longer we have to wait to see them. I remember when I thought the 3 month wait to see the neuro was a long time. Then I thought the 6 month wait to see genetics was a long time. Now it is going to be at least 8 months to see the developmental ped. It just keeps getting worse! I'm so sick of the waiting. I just want to know something!
The test they did here was the PCR. It looks for the normal copy number of repeats, which is around 30. (Fragile X is caused by having too many repeats in this region: around 30 would be normal, above 200 would be Fragile X) Since Sweets is a girl, and girls have two X chromosomes, they are looking for two bands on the PCR in the normal range. So they might see a 28 and a 30 on a normal girl. But on Sweets they only saw one band.
That doesn't necessarily mean she has Fragile X. She could just have the same number of copies on both chromosomes. If both of her chromosomes had 30 repeats, then they would just see one band at 30 - they can't separate the chromosomes. They can't tell from this test if they are seeing one chromosome's 30 or two chromosome's 30's. Two chromosomes with 30 repeats would still be normal.
If she has Fragile X, then it would only show one 30, so that is still a possibility. In that case, she might have one 30 and one 400, but the 400 is too big to show up on this test apparently. They can only see the repeats in the normal range. So, they have to do another test on her sample that can also see the big repeats, called a Southern Blot. The Southern Blot is a radioactive assay, and not a lot of places do them anymore, so that's why the sample had to be sent to Mayo for this test.
It's all the waiting that kills me really. It feels like this whole process is hurry-up-and-wait. Let's test her for this, wait months for the appointment, then wait again for the results, then when they are negative move on to the next thing and repeat. It makes the whole process take a very long time when we have to wait months between appointments. And the more specialized the docs, the longer we have to wait to see them. I remember when I thought the 3 month wait to see the neuro was a long time. Then I thought the 6 month wait to see genetics was a long time. Now it is going to be at least 8 months to see the developmental ped. It just keeps getting worse! I'm so sick of the waiting. I just want to know something!
Thursday, November 3, 2011
Genetics and audiology
Sweets had her long-awaited genetics appointment on Monday. They ended up wanting to wait for the results from the audiology re-test. If she did have a hearing loss, they would sequence her connexin-26 and screen her with an oto-chip for hearing genes. If not, they would make a different plan.
We already had our CDSA audiology scheduled for Wednesday, but they said they would like us to be seen by an ENT before they decided. They scheduled us for the Duke ENT, but the first available was not for 8 weeks, which was disappointing. I decided to call another local ENT to see about the wait there, and they said they could see us right away! I made an appointment for the next day, Tuesday.
We went to the ENT Tuesday and they took us in for the booth test. Whereas at CDSA we always did this test with speakers only, at the ENT they were able to do it with the headphones! They had Sweets sit on my lap while I bear hugged her to keep her arms down. She fussed when they put the headphones on her, but as soon as they started playing sounds in them she calmed right down! They were able to get the whole behavioral audiology done with the headphones, and they said they did NOT detect any hearing impairment! What a test!
We still went to the CDSA audiology appointment on Wednesday, where they tested her with the probes while she slept in her carseat. That worked out well too, and they also said that her hearing checked out with that test.
So, now it looks like hearing is NOT an issue.
So, what does that mean for genetics? Genetics said that they will not do the connexin test or the oto-chip. Instead, they want to test her for Fragile X. This is something that affects boys moreso than girls, because it is a gene on the X chromosome (and boys only have one, so when it doesn't work they are affected). Since girls have two X chromosomes, they can have a defect in one and still make enough protein with the other to be fine. However, some girls with the defect on one chromosome can show certain symptoms anyway. The severity ranges greatly and different girls display different subsets of symptoms to different degrees, some showing none at all. They said that they aren't saying that they think she has this, but many of her symptoms fit the ones on the list, so they would like to just be sure. Mostly they just want to rule it out.
One nice thing, is that they already have her DNA from when we had the microarray done, so she doesn't have to give blood again. They will just run the new test on the existing sample. It should take 2 weeks to get the results.
Other than that, genetics recommends that we see a developmental ped next. I called the one they recommended, and the wait is 8 months to get in with one doc, and 14 months to get in with the other! So I got on the 8 month waitlist. The 14 month waitlist doc is the one who specializes in Fragile X though, so I asked if I would have to wait that long if it turns out she does have that, and they said no, they have a Fragile X clinic on Fridays just for those kids, so the wait is not as long. Not that I think she has that, but it's good to know that we wouldn't have to wait 14 months to see a doc about it if she does!
We already had our CDSA audiology scheduled for Wednesday, but they said they would like us to be seen by an ENT before they decided. They scheduled us for the Duke ENT, but the first available was not for 8 weeks, which was disappointing. I decided to call another local ENT to see about the wait there, and they said they could see us right away! I made an appointment for the next day, Tuesday.
We went to the ENT Tuesday and they took us in for the booth test. Whereas at CDSA we always did this test with speakers only, at the ENT they were able to do it with the headphones! They had Sweets sit on my lap while I bear hugged her to keep her arms down. She fussed when they put the headphones on her, but as soon as they started playing sounds in them she calmed right down! They were able to get the whole behavioral audiology done with the headphones, and they said they did NOT detect any hearing impairment! What a test!
We still went to the CDSA audiology appointment on Wednesday, where they tested her with the probes while she slept in her carseat. That worked out well too, and they also said that her hearing checked out with that test.
So, now it looks like hearing is NOT an issue.
So, what does that mean for genetics? Genetics said that they will not do the connexin test or the oto-chip. Instead, they want to test her for Fragile X. This is something that affects boys moreso than girls, because it is a gene on the X chromosome (and boys only have one, so when it doesn't work they are affected). Since girls have two X chromosomes, they can have a defect in one and still make enough protein with the other to be fine. However, some girls with the defect on one chromosome can show certain symptoms anyway. The severity ranges greatly and different girls display different subsets of symptoms to different degrees, some showing none at all. They said that they aren't saying that they think she has this, but many of her symptoms fit the ones on the list, so they would like to just be sure. Mostly they just want to rule it out.
One nice thing, is that they already have her DNA from when we had the microarray done, so she doesn't have to give blood again. They will just run the new test on the existing sample. It should take 2 weeks to get the results.
Other than that, genetics recommends that we see a developmental ped next. I called the one they recommended, and the wait is 8 months to get in with one doc, and 14 months to get in with the other! So I got on the 8 month waitlist. The 14 month waitlist doc is the one who specializes in Fragile X though, so I asked if I would have to wait that long if it turns out she does have that, and they said no, they have a Fragile X clinic on Fridays just for those kids, so the wait is not as long. Not that I think she has that, but it's good to know that we wouldn't have to wait 14 months to see a doc about it if she does!
Monday, October 24, 2011
Upcoming genetics
We had a karyotype done through our regular pediatrician. It was one of the first tests she did when delays were noted at 12 months.
We didn't get FISH, which can look for smaller changes than would be visible on a regular karyotype, because FISH is targeted - it looks for specific changes that you ask for. But you need to suspect something first and test for it. If you don't have anything specific in mind, it is not useful.
We were offered a microarray test at our neurology eval. They said that it can detect an abnormality in like 15% of cases that already had a "normal" karyotype because it is a more sensitive test (but looks for pretty much the same type of thing).
We have a further appointment at pediatric genetics because they still haven't found anything specific, so this will be an even more detailed testing.
They keep testing her because she doesn't have a diagnosis yet, so we don't know the reason for her delay. Everything she has been tested for so far has come back negative. Maybe if you already have a diagnosis, they wouldn't need to keep testing you.
We didn't get FISH, which can look for smaller changes than would be visible on a regular karyotype, because FISH is targeted - it looks for specific changes that you ask for. But you need to suspect something first and test for it. If you don't have anything specific in mind, it is not useful.
We were offered a microarray test at our neurology eval. They said that it can detect an abnormality in like 15% of cases that already had a "normal" karyotype because it is a more sensitive test (but looks for pretty much the same type of thing).
We have a further appointment at pediatric genetics because they still haven't found anything specific, so this will be an even more detailed testing.
They keep testing her because she doesn't have a diagnosis yet, so we don't know the reason for her delay. Everything she has been tested for so far has come back negative. Maybe if you already have a diagnosis, they wouldn't need to keep testing you.
Tuesday, October 4, 2011
Audiology, asleep?
We are going back on Nov 2 to retest audiology, but I changed the appointment for during her nap time. She won't let him stick the probes in her ears, so I am hoping that she will fall asleep in the car on the way there, and we can do the test while she sleeps, according to my audiologist's blog. The audiologist said we can call when we arrive in the parking lot and he can bring the equipment down to the car and do it on her while she is asleep in her carseat. Hopefully she will just sleep through it and won't wake up! I'm hoping this will give us better answers than just the behavioral test did, since with that I question whether she is just bored by the test and that's why she isn't responding.
We know that I am a carrier for connexin 26 hearing loss (167delT), which could be a progressive hearing loss. BUT my husband is not a carrier of either of the two most common mutations in connexin 26, so it shouldn't affect her as far as we know. There are many other uncommon mutations that conceivably could have passed to her, which in combination with my 167delT could still result in hearing impairment. We are going to genetics on Oct 31, and I think that is one of the things they will test her for then.
We know that I am a carrier for connexin 26 hearing loss (167delT), which could be a progressive hearing loss. BUT my husband is not a carrier of either of the two most common mutations in connexin 26, so it shouldn't affect her as far as we know. There are many other uncommon mutations that conceivably could have passed to her, which in combination with my 167delT could still result in hearing impairment. We are going to genetics on Oct 31, and I think that is one of the things they will test her for then.
Wednesday, September 28, 2011
failed audiology
Sweets failed her audiology this morning.
The test looks like this: We sit in a booth, she on my lap as though I was a chair. The audiologist watches through a window. He plays sounds - music, tones, or white noise - from speakers coming from the front two corners of the room. If Sweets hears the sound, she would presumably look in the direction it came from. If she looks to the correct corner, a box in that corner lights up and shows her a toy (such as a teddy bear or monkey).
She had her first one at 12 months, which she passed just fine, and then one at 20 months that she passed but didn't respond to all the sounds (music better than tones). And now this time she did not respond to many of the sounds unless they were loud, and the ones she did notice she couldn't localize. It could be that she just wasn't very interested in the noises and didn't care to look for them I guess. She fussed too much to put anything in her ears to test them individually, which she has never allowed yet. The audiologist did seem a little concerned today
The audiologist wanted me to take her right to the ped to have her ears looked at to see if she has an ear infection or fluid that could be affecting the test. So we went straight there and they looked, but said that she doesn't have anything. Just a "slightly thickened" ear drum on the left side, which can indicate a prior infection, but could also be normal. Her right side was totally in the clear.
So we will go back to the audiologist in a month and just re-test her. I'm not sure what else we can do on a kid this age. I do feel like she can hear me, and she definitely enjoys music. But this might explain some of her speech delay issues, if it turns out she has some hearing difficulties.
The test looks like this: We sit in a booth, she on my lap as though I was a chair. The audiologist watches through a window. He plays sounds - music, tones, or white noise - from speakers coming from the front two corners of the room. If Sweets hears the sound, she would presumably look in the direction it came from. If she looks to the correct corner, a box in that corner lights up and shows her a toy (such as a teddy bear or monkey).
She had her first one at 12 months, which she passed just fine, and then one at 20 months that she passed but didn't respond to all the sounds (music better than tones). And now this time she did not respond to many of the sounds unless they were loud, and the ones she did notice she couldn't localize. It could be that she just wasn't very interested in the noises and didn't care to look for them I guess. She fussed too much to put anything in her ears to test them individually, which she has never allowed yet. The audiologist did seem a little concerned today
The audiologist wanted me to take her right to the ped to have her ears looked at to see if she has an ear infection or fluid that could be affecting the test. So we went straight there and they looked, but said that she doesn't have anything. Just a "slightly thickened" ear drum on the left side, which can indicate a prior infection, but could also be normal. Her right side was totally in the clear.
So we will go back to the audiologist in a month and just re-test her. I'm not sure what else we can do on a kid this age. I do feel like she can hear me, and she definitely enjoys music. But this might explain some of her speech delay issues, if it turns out she has some hearing difficulties.
Thursday, September 22, 2011
New speech therapist, new school
Sweets has been with her new speech therapist for a month now. Her old SLP moved away, and this one is from the same agency. A week after starting with the new therapist, Sweets started at CLC. This is the developmental preschool. It is on the same campus as Munchkin's elementary school, making it super convenient for us too. They are 50% typical and 50% special needs there, and the lead teacher in each room is certified in special ed. So even though we dropped our developmental therapy in July, I feel like she is still getting a similar service by being at CLC. If Sweets qualifies for developmental day on her IEP, then she will be able to go to this school for free, but for now we pay full tuition.
I am happy with her care there. She seems to be enjoying it. She seems to be making "friends" as much as that is possible for her. A few of the children seem to get excited to see her when we come in each morning. Several of them also have similar delays to Sweets.
They are using our cloth diapers and seem to have totally adjusted to that. They were nervous at first because they haven't had a kid in cloth diapers for like 20 years or something (!!). But they were willing to try and they are doing fine. They are using more diapers than at our previous home daycare because our previous care provider had Sweets going pant-less a lot of the day trying to help her learn to use the potty. Sweets is pretty good about staying dry if she is not wearing a diaper, and she will sit on the potty, but she WILL NOT pee in the potty. I don't think she really gets what she is supposed to be doing even. When she has to go, she will request a diaper (by signing CHANGE). They do let her try to use the potty at CLC, but they tend to keep her in diapers all day otherwise.
Surprisingly, the staff here do not really know much sign language, and there are not other kids who sign. I would have expected that to be more common in a school like this. They seem willing to learn, but in the time that she has been there they tell me that she doesn't really sign very much anyway. I don't know if that is because she is using speech so much more, or because they don't understand her signs so she isn't doing it because it doesn't work, or maybe she really is signing and they just don't realize it.
CLC does have their own therapists, but they do not accept our insurance so we are not using them. They do not mind that we bring in our own outside therapist. If Sweets qualifies for IEP services, then she will be able to use the school therapist for no cost to us once she turns 3.
Like our previous SLP, our new one is also in her fellowship year. Some people, like our CDSA coordinator, don't seem to like that and would prefer to work with more experienced therapists. But really, I don't mind at all. They may not have a lot of experience, but they are fresh out of school where they have just learned the most up-t0-date techniques and theories. They are fresh and young and excited and have big ideas! They also have to be supervised by an experienced SLP, which means that there is another person with experience monitoring Sweets' case.
I like the new therapist. I have only observed her therapy once so far because it is less convenient for me to observe at CLC being that it is further from my job. I did talk to her by phone for about an hour the other evening and gave her some information and history on Sweets that hadn't been passed on to her in the switch. We discussed that with the current rate of Sweets' progress, I was wondering if she would even qualify for IEP once she turned 3. It seems like so much progress to me, but I don't have a good handle on what is "typical" anymore. She said that she thought Sweets would qualify, if only for articulation delay, but possibly for language delay as well. But that is still 6 months away, so it is hard to predict. But it is almost time to start thinking about the transition from early intervention to IEP.
I am happy with her care there. She seems to be enjoying it. She seems to be making "friends" as much as that is possible for her. A few of the children seem to get excited to see her when we come in each morning. Several of them also have similar delays to Sweets.
They are using our cloth diapers and seem to have totally adjusted to that. They were nervous at first because they haven't had a kid in cloth diapers for like 20 years or something (!!). But they were willing to try and they are doing fine. They are using more diapers than at our previous home daycare because our previous care provider had Sweets going pant-less a lot of the day trying to help her learn to use the potty. Sweets is pretty good about staying dry if she is not wearing a diaper, and she will sit on the potty, but she WILL NOT pee in the potty. I don't think she really gets what she is supposed to be doing even. When she has to go, she will request a diaper (by signing CHANGE). They do let her try to use the potty at CLC, but they tend to keep her in diapers all day otherwise.
Surprisingly, the staff here do not really know much sign language, and there are not other kids who sign. I would have expected that to be more common in a school like this. They seem willing to learn, but in the time that she has been there they tell me that she doesn't really sign very much anyway. I don't know if that is because she is using speech so much more, or because they don't understand her signs so she isn't doing it because it doesn't work, or maybe she really is signing and they just don't realize it.
CLC does have their own therapists, but they do not accept our insurance so we are not using them. They do not mind that we bring in our own outside therapist. If Sweets qualifies for IEP services, then she will be able to use the school therapist for no cost to us once she turns 3.
Like our previous SLP, our new one is also in her fellowship year. Some people, like our CDSA coordinator, don't seem to like that and would prefer to work with more experienced therapists. But really, I don't mind at all. They may not have a lot of experience, but they are fresh out of school where they have just learned the most up-t0-date techniques and theories. They are fresh and young and excited and have big ideas! They also have to be supervised by an experienced SLP, which means that there is another person with experience monitoring Sweets' case.
I like the new therapist. I have only observed her therapy once so far because it is less convenient for me to observe at CLC being that it is further from my job. I did talk to her by phone for about an hour the other evening and gave her some information and history on Sweets that hadn't been passed on to her in the switch. We discussed that with the current rate of Sweets' progress, I was wondering if she would even qualify for IEP once she turned 3. It seems like so much progress to me, but I don't have a good handle on what is "typical" anymore. She said that she thought Sweets would qualify, if only for articulation delay, but possibly for language delay as well. But that is still 6 months away, so it is hard to predict. But it is almost time to start thinking about the transition from early intervention to IEP.
Wednesday, August 31, 2011
What's the catch?
I got an email a few weeks ago from the Family Support Network, which is a service for families of children with special needs. It said they were looking for families to mentor students at UNC who are graduate students in early childhood, special education, speech and language pathology, and occupational therapy. A part of their coursework requires them to spend time with a family and do a service project for them. It requires a minimum of 15 hours from the student over the fall semester, and the service hours may include babysitting if we don't have more specific needs. Also, they will pay us $50 for our time. So I signed up, and they said they would let us know if they matched us with a student.
So, I just got an email that they matched a student to our family, so we are in. They gave us her name, so we googled her (of course...). And it turns out that she is our age (I guess I was expecting someone like 22 years old), she is an experienced pre-school teacher, she currently works at TLS (the Reggio daycare that Munchkin was at until she started K) as co-lead for the half-day program, and she is getting her masters in Early Childhood Intervention and Family Support. She sounds very qualified to babysit for us for free!
She is supposed to just hang out with us for some of the hours just observing our daily lives, eat with us, come to the grocery store, whatever. She can observe Sweets at her daycare and in her speech therapy. She can come to IFSP or IEP meetings (though I don't think we have any scheduled during this semester) and doctor's appointments. If she can come with us to the genetics appt in Oct that would be great because the paperwork warned us that the appt would take 3 hours and that you might want to bring someone who can occupy your child while you talk to the doc.
I'm trying to think of other service-y things she can do. I'm thinking she can help us organize our toys/games which right now are just all over the place and there are so many that it is overwhelming. One of Sweets' evaluations had suggested implementing a different kind of toy system where only a few are available at once so that she isn't overwhelmed with the choices, so maybe her experience as a pre-school teacher would help with figuring out the best way to do that and which toys to leave out, etc.
My husband keeps saying, what's the catch? I don't know!
UPDATE: Well, we were informed that our student dropped the class. And the other students are already paired with families. So I guess we are not doing this now...
So, I just got an email that they matched a student to our family, so we are in. They gave us her name, so we googled her (of course...). And it turns out that she is our age (I guess I was expecting someone like 22 years old), she is an experienced pre-school teacher, she currently works at TLS (the Reggio daycare that Munchkin was at until she started K) as co-lead for the half-day program, and she is getting her masters in Early Childhood Intervention and Family Support. She sounds very qualified to babysit for us for free!
She is supposed to just hang out with us for some of the hours just observing our daily lives, eat with us, come to the grocery store, whatever. She can observe Sweets at her daycare and in her speech therapy. She can come to IFSP or IEP meetings (though I don't think we have any scheduled during this semester) and doctor's appointments. If she can come with us to the genetics appt in Oct that would be great because the paperwork warned us that the appt would take 3 hours and that you might want to bring someone who can occupy your child while you talk to the doc.
I'm trying to think of other service-y things she can do. I'm thinking she can help us organize our toys/games which right now are just all over the place and there are so many that it is overwhelming. One of Sweets' evaluations had suggested implementing a different kind of toy system where only a few are available at once so that she isn't overwhelmed with the choices, so maybe her experience as a pre-school teacher would help with figuring out the best way to do that and which toys to leave out, etc.
My husband keeps saying, what's the catch? I don't know!
UPDATE: Well, we were informed that our student dropped the class. And the other students are already paired with families. So I guess we are not doing this now...
Wednesday, August 10, 2011
Many new words!
Sweets has been trying to say a lot of new things in the last 3 months. Since the speech evals she has gone from saying about 10 words/word approximations to over 50 (that I can understand, not other people). So her spoken words about match her signs now! For a long time she only said two repeated syllables, such as Baby, Mama, Dada, Pee Pee. But now she can say two different syllables - "Eee Ahh" means Cereal, "Ahh Ooh" means Thank You (or Love You), "Bah Pooh" means Waffle (or Apple).
Spoken Words
at 18 months
1- Bye-Bye
2- Hi
3- Uh Oh
19 months
4- Baby
5- Night Night
6- Dada
7- Mama
20 months
8- Cheese
9- Done
10- Up
23 months
11- bubble
12- Drink
13- Milk
14- More
15- pee-pee
24 months
16- Shoes
25 months
17- Pat
18- No
26 months
19- Apple
20- Ball
21- Hot
27 months
22- Bird
23- Boat
24- Book
25- Car
26- Cat
27- Cold
28- Daddy
29- Dog
30- Door
31- Down
32- Eat
33- Juice
34- Love You
35- Mine
36- Outside
37- please
38- poop
39- Poppy
40- Potty
41- Shoo-Whee
42- Socks
43- Star
44- Yes
45- Banana
46- Bar
47- Stop
48- Thank You
49- Wet
50- Hooray
27.5 months
51- Cereal
52- Here
53- Moon
54- Off
55- On
56- The End
57- Waffle
Spoken Words
at 18 months
1- Bye-Bye
2- Hi
3- Uh Oh
19 months
4- Baby
5- Night Night
6- Dada
7- Mama
20 months
8- Cheese
9- Done
10- Up
23 months
11- bubble
12- Drink
13- Milk
14- More
15- pee-pee
24 months
16- Shoes
25 months
17- Pat
18- No
26 months
19- Apple
20- Ball
21- Hot
27 months
22- Bird
23- Boat
24- Book
25- Car
26- Cat
27- Cold
28- Daddy
29- Dog
30- Door
31- Down
32- Eat
33- Juice
34- Love You
35- Mine
36- Outside
37- please
38- poop
39- Poppy
40- Potty
41- Shoo-Whee
42- Socks
43- Star
44- Yes
45- Banana
46- Bar
47- Stop
48- Thank You
49- Wet
50- Hooray
27.5 months
51- Cereal
52- Here
53- Moon
54- Off
55- On
56- The End
57- Waffle
Monday, June 20, 2011
Communication Boards
Our communication boards are here. The people at the state early intervention office made them for us after our recent speech eval. We are supposed to use them to help prompt her to say the words verbally. She already knows how to sign pretty much all of these words. They also gave us a communication device to use, which has different communication boards that you put in the device and then you can push on the picture to hear the word. It reminds me of some books we have like that, except they are customizable. Here are the communication boards:
One note - I have to say that I really appreciate that she made the picture for "Milk" a picture of nursing. That is quite applicable to our lives with a nursing toddler! And it is certainly a frequently needed word for Sweets!
One note - I have to say that I really appreciate that she made the picture for "Milk" a picture of nursing. That is quite applicable to our lives with a nursing toddler! And it is certainly a frequently needed word for Sweets!
Thursday, June 16, 2011
Financial Complaint Letter
June 1, 2011
I am a parent of a child enrolled in early intervention services at the Durham CDSA. My child has been in the program for one year now and receives CBRS (developmental therapy), physical therapy, and speech therapy. Speech is her biggest issue and she has speech therapy twice per week.
Today I had my yearly IFSP review and was asked to bring my tax forms for the financial review as well. I was aware that the financial system was changing because I received a letter asking me to bring my tax documents, but my impression had been just that you would now require verification of income instead of using self-stated income. However, the change is much greater than that. Previously, the income calculation for the sliding scale was my gross income minus taxes, daycare expenses, and medical expenses. Now I am told that it is simply based on gross income without any deductions. Your website says that “It is likely that the majority of families will see little or no increase in the cost for their child's early intervention services,” however that is not true at all in my case. Not deducting my taxes, daycare, and medical expenses makes a difference of $45,000 for me, and since you have not adjusted the sliding scale categories to take this difference into account on the income scale, I have suddenly gone from the 40% bracket to the 100% bracket. When you say that the majority of families will see little to no increase in the cost of services, you must only be referring to those at the very top and very bottom of the bracket already. This cannot be true for middle class families, particularly those who have daycare expenses!
In addition, I also found out today that CBRS services will no longer be covered and I will have to pay for those as of July 1, which means that I will have to pay 100% for four therapies per week instead of 40% for three therapies per week. My current weekly expense is $24 and it will go up to $80 as long as my insurance is used. However, I only get 75 therapy visits per year combined under my insurance plan, so after my visits run out, I would be paying almost $400 per week for therapies. If CBRS visits will now count toward my insurance visits, then that just means I will run out of those visits that much sooner.
I have been trying to budget in advance for my daughter’s therapies, knowing that I will eventually run out of insurance visits and planning for that. However, adding CBRS to the mix, decreasing the time to when my insurance visits will run out, and increasing my cost share from 40% to 100% has really given me a shock. This is a huge change in my financial situation to spring on me without notice. As a result, we are now planning to cut CBRS and PT from my daughter’s plan and focus just on speech. This will decrease our monthly costs, and increase the amount of time we have until we run out of insurance visits. However, my daughter will be losing services.
I can’t imagine that we will be the only ones to cut services that we would otherwise like to have for our child due to of this new financial policy. I’m sure that many families will be put in a similar position and need to cut services. Our CBRS therapist was dismayed and said she expects her remaining clients to become mostly only the Medicaid clients, so I am not the only person who expects this. I understand that there is a 5% monthly cap, which we will certainly make use of, but 5% of gross income is a lot and I doubt that most people have that kind of flexibility in their budgets. If the point of the state Infant Toddler Program is to get more kids under age 3 into the early intervention services that would help them, then this new policy does the opposite because now kids like mine will be getting fewer services.
This new policy was not effectively communicated to me or even to my service providers in advance of my IFSP meeting. My CDSA service coordinator did not even realize that my taxes/daycare/medical would no longer be deducted from my income for my sliding scale calculation. She can’t communicate this information to me if she isn’t informed of it herself. When I am trying to plan and budget my life, I need more notice than this for such a major change. I feel that a notice describing the changes in the financial policy should have been sent out to families as soon as the changes were made. In addition, families who are currently receiving CBRS need to be informed that in one month they will have to start paying for this service. Today was the first I heard of it, and it’s only because my yearly review was due. I looked at the documentation on your website and did not find anything explicitly describing that the method of calculating income is significantly different, nor that CBRS would no longer be included. The new policy is there, but there is nothing contrasting it with the old and detailing the differences. These changes need to be made clear to the service coordinators and the families using these services.
I don’t understand why this drastic change was made to the sliding scale calculation, nor why you would think that this would have little to no effect on families. I don’t understand why I wasn’t given more notice and information about this change so that I could plan and budget for the future. I don’t understand why my providers and service coordinator are not even well enough informed about the changes in order to accurately convey the information to me in a timely manner. I am disappointed that CBRS will no longer be covered, and that today was the first time I was told. I am disappointed that I will be paying significantly more money than I had budgeted for significantly fewer services. And I am disappointed that my daughter will be receiving fewer services because of these changes.
I am a parent of a child enrolled in early intervention services at the Durham CDSA. My child has been in the program for one year now and receives CBRS (developmental therapy), physical therapy, and speech therapy. Speech is her biggest issue and she has speech therapy twice per week.
Today I had my yearly IFSP review and was asked to bring my tax forms for the financial review as well. I was aware that the financial system was changing because I received a letter asking me to bring my tax documents, but my impression had been just that you would now require verification of income instead of using self-stated income. However, the change is much greater than that. Previously, the income calculation for the sliding scale was my gross income minus taxes, daycare expenses, and medical expenses. Now I am told that it is simply based on gross income without any deductions. Your website says that “It is likely that the majority of families will see little or no increase in the cost for their child's early intervention services,” however that is not true at all in my case. Not deducting my taxes, daycare, and medical expenses makes a difference of $45,000 for me, and since you have not adjusted the sliding scale categories to take this difference into account on the income scale, I have suddenly gone from the 40% bracket to the 100% bracket. When you say that the majority of families will see little to no increase in the cost of services, you must only be referring to those at the very top and very bottom of the bracket already. This cannot be true for middle class families, particularly those who have daycare expenses!
In addition, I also found out today that CBRS services will no longer be covered and I will have to pay for those as of July 1, which means that I will have to pay 100% for four therapies per week instead of 40% for three therapies per week. My current weekly expense is $24 and it will go up to $80 as long as my insurance is used. However, I only get 75 therapy visits per year combined under my insurance plan, so after my visits run out, I would be paying almost $400 per week for therapies. If CBRS visits will now count toward my insurance visits, then that just means I will run out of those visits that much sooner.
I have been trying to budget in advance for my daughter’s therapies, knowing that I will eventually run out of insurance visits and planning for that. However, adding CBRS to the mix, decreasing the time to when my insurance visits will run out, and increasing my cost share from 40% to 100% has really given me a shock. This is a huge change in my financial situation to spring on me without notice. As a result, we are now planning to cut CBRS and PT from my daughter’s plan and focus just on speech. This will decrease our monthly costs, and increase the amount of time we have until we run out of insurance visits. However, my daughter will be losing services.
I can’t imagine that we will be the only ones to cut services that we would otherwise like to have for our child due to of this new financial policy. I’m sure that many families will be put in a similar position and need to cut services. Our CBRS therapist was dismayed and said she expects her remaining clients to become mostly only the Medicaid clients, so I am not the only person who expects this. I understand that there is a 5% monthly cap, which we will certainly make use of, but 5% of gross income is a lot and I doubt that most people have that kind of flexibility in their budgets. If the point of the state Infant Toddler Program is to get more kids under age 3 into the early intervention services that would help them, then this new policy does the opposite because now kids like mine will be getting fewer services.
This new policy was not effectively communicated to me or even to my service providers in advance of my IFSP meeting. My CDSA service coordinator did not even realize that my taxes/daycare/medical would no longer be deducted from my income for my sliding scale calculation. She can’t communicate this information to me if she isn’t informed of it herself. When I am trying to plan and budget my life, I need more notice than this for such a major change. I feel that a notice describing the changes in the financial policy should have been sent out to families as soon as the changes were made. In addition, families who are currently receiving CBRS need to be informed that in one month they will have to start paying for this service. Today was the first I heard of it, and it’s only because my yearly review was due. I looked at the documentation on your website and did not find anything explicitly describing that the method of calculating income is significantly different, nor that CBRS would no longer be included. The new policy is there, but there is nothing contrasting it with the old and detailing the differences. These changes need to be made clear to the service coordinators and the families using these services.
I don’t understand why this drastic change was made to the sliding scale calculation, nor why you would think that this would have little to no effect on families. I don’t understand why I wasn’t given more notice and information about this change so that I could plan and budget for the future. I don’t understand why my providers and service coordinator are not even well enough informed about the changes in order to accurately convey the information to me in a timely manner. I am disappointed that CBRS will no longer be covered, and that today was the first time I was told. I am disappointed that I will be paying significantly more money than I had budgeted for significantly fewer services. And I am disappointed that my daughter will be receiving fewer services because of these changes.
Thursday, May 26, 2011
Duke speech eval
We had a speech eval at Duke this week, for another opinion regarding apraxia. Or just for another opinion in general on what could be going on with Sweets. We were there for about 2.5 hours and while Sweets was shy at first (understandably), I think that she got comfortable and performed well for the eval.
First off, this SLP does NOT think that Sweets has apraxia. She said that there are too many things that don't fit. She said that maybe as she gets older she may show more signs of apraxia, but right now she doesn't. She also said that Sweets is doing so many good things that she feels really good about her progress, and she thinks that we have a good chance that Sweets will just "catch up" by the time she's 5, with therapy and hard work, of course. So that is very encouraging!
She did a test called REEL-3, which is a different test than what we had last week. On this test, there is a series of yes/no questions. The first number is based on when she gets 5 "Yes" answers in a row, and the second is based on when she gets 5 "No" answers in a row. For some reason, and oddly, Sweets actually scored lower on receptive language than on expressive language on this test. Neither the SLP nor I felt that this accurately describes Sweets, but that's just the way the test came out this time. She said that once she is 2.5, they could do a different test on her that might be more accurate. It seems like everyone uses a different test and it's just whatever test they like - not very "standard" at all.
~~~~~~~~~~~~~~~~~
REEL-3
Receptive Language: Raw Score 45 | Age Equivalent 16 months | Ability Score 78 |
%ile Rank 7%
Expressive Language:Raw Score 48 | Age Equivalent 20 months | Ability Score 85 |
%ile Rank 16%
Language Ability Score = 78
Scale:
90-110 Average
80-89 Below Average
70-79 Poor
<70 Very Poor
~~~~~~~~~~~~~~~~~
I told the SLP about the recommendations from the EI eval, regarding using the picture boards and focusing on 20 words. She said that she didn't want to say that she disagreed with the other SLP, but that it's definitely not what she would have recommended. (Sounds like she disagrees to me...) She said that she does use picture boards for kids who can't/don't sign, but that since Sweets can sign that she wouldn't have recommended a picture board for her. She also said that she would continue to work on all vocabulary with Sweets. She said continue to sign and say the word together, and encourage her to try to do both as well, instead of just signing. She does this sometimes, but often she just signs. Our usual pattern is that she signs, I ask "Do you want XXX?", she signs again while approximating XXX. So we are to try to get her to do the approximation up front and prompt her with less. So instead of saying the whole word, I can try to shape my lips, or look at her expectantly, to give her the idea that I want her to say it. Gradually over time, of course.
She did demonstrate this technique with Sweets, and Sweets responded to it pretty well. She even got Sweets to say "On" which I have never heard her say before. This is a meaningful new word because it is a VC (vowel consonant) word, and all of her others are CV sounds, particularly CVCV words where C1V1C1V1, ie Mama, Dada, ByeBye, PeePee, NightNight (NiNi).
In the end, I felt a little confused because the two evals differed so much in their assessments and recommendations that it makes it hard to know what to do. It is looking like Sweets does not have apraxia, though we don't know what she does have either yet. Or if she is "just a late bloomer" after all this.
First off, this SLP does NOT think that Sweets has apraxia. She said that there are too many things that don't fit. She said that maybe as she gets older she may show more signs of apraxia, but right now she doesn't. She also said that Sweets is doing so many good things that she feels really good about her progress, and she thinks that we have a good chance that Sweets will just "catch up" by the time she's 5, with therapy and hard work, of course. So that is very encouraging!
She did a test called REEL-3, which is a different test than what we had last week. On this test, there is a series of yes/no questions. The first number is based on when she gets 5 "Yes" answers in a row, and the second is based on when she gets 5 "No" answers in a row. For some reason, and oddly, Sweets actually scored lower on receptive language than on expressive language on this test. Neither the SLP nor I felt that this accurately describes Sweets, but that's just the way the test came out this time. She said that once she is 2.5, they could do a different test on her that might be more accurate. It seems like everyone uses a different test and it's just whatever test they like - not very "standard" at all.
~~~~~~~~~~~~~~~~~
REEL-3
Receptive Language: Raw Score 45 | Age Equivalent 16 months | Ability Score 78 |
%ile Rank 7%
Expressive Language:Raw Score 48 | Age Equivalent 20 months | Ability Score 85 |
%ile Rank 16%
Language Ability Score = 78
Scale:
90-110 Average
80-89 Below Average
70-79 Poor
<70 Very Poor
~~~~~~~~~~~~~~~~~
I told the SLP about the recommendations from the EI eval, regarding using the picture boards and focusing on 20 words. She said that she didn't want to say that she disagreed with the other SLP, but that it's definitely not what she would have recommended. (Sounds like she disagrees to me...) She said that she does use picture boards for kids who can't/don't sign, but that since Sweets can sign that she wouldn't have recommended a picture board for her. She also said that she would continue to work on all vocabulary with Sweets. She said continue to sign and say the word together, and encourage her to try to do both as well, instead of just signing. She does this sometimes, but often she just signs. Our usual pattern is that she signs, I ask "Do you want XXX?", she signs again while approximating XXX. So we are to try to get her to do the approximation up front and prompt her with less. So instead of saying the whole word, I can try to shape my lips, or look at her expectantly, to give her the idea that I want her to say it. Gradually over time, of course.
She did demonstrate this technique with Sweets, and Sweets responded to it pretty well. She even got Sweets to say "On" which I have never heard her say before. This is a meaningful new word because it is a VC (vowel consonant) word, and all of her others are CV sounds, particularly CVCV words where C1V1C1V1, ie Mama, Dada, ByeBye, PeePee, NightNight (NiNi).
In the end, I felt a little confused because the two evals differed so much in their assessments and recommendations that it makes it hard to know what to do. It is looking like Sweets does not have apraxia, though we don't know what she does have either yet. Or if she is "just a late bloomer" after all this.
Monday, May 23, 2011
May speech evals
Sweets had her CDSA eval last week for speech. The SLP said that there are some features consistent with apraxia, but others that are not. At this stage, she didn't rule it in or out. We will have our Duke eval this week, so I'm curious whether they will say anything different. I have heard before that she may be too young to really be able to tell because she only just turned two. The good news though is that her receptive language seems fine, and her cognitive tested within average range this month too. Her expressive language is also not bad, in that she can sign to communicate (and she is learning new signs rapidly!). Her speech skills tested at 9-12 month level.
The CDSA eval SLP suggested making a list of about 20 words that Sweets would want to use frequently through her day, and working on those specifically, aiming for consistency and accuracy. So a more focussed approach instead of a broader approach. She also suggested that she could make us a set of picture cards for those words, one for home and another for daycare, to help Sweets identify what she is saying to us. That seemed like a good idea at the time, but as I think about it more I'm not really sure what that will give us, considering that Sweets can already sign all of those words (and a lot more) to give us a cue for what she is trying to say. What advantage would picture cards give us over the signing that she is already doing?
The CDSA eval SLP suggested making a list of about 20 words that Sweets would want to use frequently through her day, and working on those specifically, aiming for consistency and accuracy. So a more focussed approach instead of a broader approach. She also suggested that she could make us a set of picture cards for those words, one for home and another for daycare, to help Sweets identify what she is saying to us. That seemed like a good idea at the time, but as I think about it more I'm not really sure what that will give us, considering that Sweets can already sign all of those words (and a lot more) to give us a cue for what she is trying to say. What advantage would picture cards give us over the signing that she is already doing?
Sunday, May 15, 2011
Sure Step!
Our Sure Steps have arrived! I took Sweets for her fitting on Friday for her new SMO orthotics. The Sure Steps are made especially for her based on the measurements the orthotist took on her a few weeks ago. We got the flowers and bugs pattern and they are definitely nice. We also bought the Sure Step shoes to go with them, because I had heard that it can be hard to find shoes that fit over orthotics. These have a wide toe box and wide heel to accommodate the orthotics, and there are two insoles that are removable to fit with or without the orthosis.
We arranged the payment so that the insurance will be billed first. They will charge us a deductible (around $300-350) and then they cover 60%. What's left will be charged to the state early intervention, and they will pay 60% of that. In the end, I expect that we will have to pay about $150, but we'll see how it ends up.
I expected Sweets to fuss when we put the Sure Steps on for the first time, but she really didn't at all. She even seemed to like them right away! The orthotist showed me how to put them on her feet, pushing her big toe up and to the side to get her heel in deeply. The velcro strap is supposed to be pulled tight - "Snug is not enough" - so she made a mark on the outside so that we would be sure to pull it to the right amount.
SureSteps on, without shoes
SureSteps on with shoes
She is supposed to wear them for 1 hour the first day, 2 hours the next day, 3 hours the next day, etc until after 1 week she will be wearing them full-time. Today is day 3 and she seems to do really well in them. She is walking well, and best of all - she isn't falling down a lot! The reason we got them in the first place is because Sweets pronates her feet when she walks, causing her to fall down frequently. These are supposed to help with that, and they seem to already! They should also help her learn to run and climb.
We arranged the payment so that the insurance will be billed first. They will charge us a deductible (around $300-350) and then they cover 60%. What's left will be charged to the state early intervention, and they will pay 60% of that. In the end, I expect that we will have to pay about $150, but we'll see how it ends up.
I expected Sweets to fuss when we put the Sure Steps on for the first time, but she really didn't at all. She even seemed to like them right away! The orthotist showed me how to put them on her feet, pushing her big toe up and to the side to get her heel in deeply. The velcro strap is supposed to be pulled tight - "Snug is not enough" - so she made a mark on the outside so that we would be sure to pull it to the right amount.
SureSteps on, without shoes
SureSteps on with shoes
She is supposed to wear them for 1 hour the first day, 2 hours the next day, 3 hours the next day, etc until after 1 week she will be wearing them full-time. Today is day 3 and she seems to do really well in them. She is walking well, and best of all - she isn't falling down a lot! The reason we got them in the first place is because Sweets pronates her feet when she walks, causing her to fall down frequently. These are supposed to help with that, and they seem to already! They should also help her learn to run and climb.
Wednesday, May 4, 2011
Developmental Eval - cognitive
Today Sweets had a developmental eval. The eval was done at our home and took about 1.5 hours. By the end, Sweets was just not interested in participating anymore. I was surprised that she did the 3-piece puzzle (she usually has a lot of trouble with that), but she would not even really try the 9-piece puzzle. She just got up and walked away! LOL The evaluator did a test where she hid a toy under a washcloth to see if Sweets could find it. At first she found it every time. But when the evaluator hid the toy, and then moved the washcloths, Sweets failed to find the toy every time. There was also a part with matching pictures, which Sweets participated in but failed every time.
The evaluator used the Bayley Scales test again, which is what we had last year too. This time, she scored a 90 for cognitive! Yay! Last time she had scored an 80, which is borderline delayed, but a 90 is within average range! We are very excited about that, because as long as she can understand things, even if she can't speak, she can still learn to communicate in other ways. She's already communicating well using sign language, and I know there are many other communication methods too. Sweets was also scored for social/emotional and scored at 93, but we weren't really concerned there. She did not get scored for PT, adaptive, or speech because she recently had a PT and OT eval, and she has a speech eval coming up this month.
The evaluator used the Bayley Scales test again, which is what we had last year too. This time, she scored a 90 for cognitive! Yay! Last time she had scored an 80, which is borderline delayed, but a 90 is within average range! We are very excited about that, because as long as she can understand things, even if she can't speak, she can still learn to communicate in other ways. She's already communicating well using sign language, and I know there are many other communication methods too. Sweets was also scored for social/emotional and scored at 93, but we weren't really concerned there. She did not get scored for PT, adaptive, or speech because she recently had a PT and OT eval, and she has a speech eval coming up this month.
Monday, April 25, 2011
upcoming IFSP review
I was speaking to our early intervention coordinator about Sweets' upcoming IFSP yearly review. We decided to have her evals before the IFSP review to have a better idea of where she stands before making new goals for her. She will have a developmental eval, and also a speech eval. The coordinator brought up apraxia to me, not knowing that I am already looking into it, and suggested that they can eval for that. I updated her about how the SLP didn't think that Sweets could really be diagnosed with apraxia until closer to 3, and how my ped said they could do the eval at Duke at age 2 so we have a Duke eval scheduled. She said that CDSA can do an eval for apraxia too, so we are thinking we will do both and have a 2nd opinion on this. I have also asked the SLP for more information on what she thinks fits or not about apraxia for Sweets at this point and am waiting on an email back on that. Unfortunately, the SLP will be out of town for our IFSP review, and will miss it. Considering speech is her biggest issue, that is a shame, but she will give a report for the IFSP before she leaves.
We also had Sweets measured for SureStep orthotics. I had the impression from the PT that it would cost around $150, but that is way off - it is more like $1100! Some of it is covered by insurance, and CDSA will also pay some, so hopefully in the end we'll only have to pay under $300, but I still don't know how much.
We also had Sweets measured for SureStep orthotics. I had the impression from the PT that it would cost around $150, but that is way off - it is more like $1100! Some of it is covered by insurance, and CDSA will also pay some, so hopefully in the end we'll only have to pay under $300, but I still don't know how much.
Thursday, April 7, 2011
speech and apraxia
The only words that Sweets has that are really pretty clear and that she uses in context are Baby, Dada, and PeePee. Sometimes Bye-bye, sometimes Mama, but those require prompting. For other words, she will sometimes make an approximation sound, but it requires prompting. For example, she signs MORE, I say "You want more? More, More, Say More", and she will say "Muh". Words that begin with M, D, or B, she will usually do that for, just saying "Muh" or "Duh" or "Buh" with prompting and after signing. She also says "Buh" for Up. Sometimes we think she is trying to say "Love You" but it sounds like "Ahh Ooh" and we aren't sure. Some words she really tries to say, but they come out like just a garbled mess, like Shoes and Cheese. And those are about all the things she says. She will repeat more individual sounds with prompting if she is in the right mood for it (including "FFF" and "Puh" and "Lah"), and she will babble various sounds together as well. She also frequently makes a "Digga Digga Digga" sound in her babbling, which I don't think means anything, or if it does we don't understand it. Perhaps she is too young for the apraxia evaluation because she doesn't really have enough words to look at a picture and say what it is?
She knows about 40-50 ASL signs and communicates pretty effictively with sign. She's had her hearing checked twice. She will turn 2 this month.
We have signed her up for CLC, the inclusive special needs daycare, for this fall. Sweets will be be under CDSA until age 3 before going under the county school system. If she qualifies for developmental classroom on her IEP at that time, then the county will pay her tuition at CLC. I'm not sure if I can expect that she would qualify for that though.
She knows about 40-50 ASL signs and communicates pretty effictively with sign. She's had her hearing checked twice. She will turn 2 this month.
We have signed her up for CLC, the inclusive special needs daycare, for this fall. Sweets will be be under CDSA until age 3 before going under the county school system. If she qualifies for developmental classroom on her IEP at that time, then the county will pay her tuition at CLC. I'm not sure if I can expect that she would qualify for that though.
Tuesday, April 5, 2011
Apraxia?
Sweets has her appointment next week to get fitted for the orthotics, so that ball is rolling. Sweets made a big jump in abilities around 18-19 months, but now is pretty stable again. I can't say she really has many more words than she did 3 months ago, and she isn't really saying them any better than she was. The only notable addition to her vocabulary is "pee pee", though she will attempt to repeat certain sounds and words with prompting. She does have some more consonants - her newest is the "F" sound. She has at least 40 signs though and picks them up more easily and uses them in context, and another 10 or so that she is trying. She will sometimes combine two signs, such as DRINK MILK, to tell us what she wants. With prompting, she will say the first sound of a word with the sign ("duh" for done, "muh" for more or milk, etc). She will sometimes look right at you and babble something, giving you the impression that she thinks she is telling you something specific. She is doing pretty well at identifying body parts now (or at least face parts). She can follow 2 step directions. She had an OT eval because she can't do the shape sorter or chunky puzzles, but she can do the piggy bank just fine, so they concluded that it is more of a spacial reasoning issue than an OT issue.
Over the weekend, I happened to be at a party with a pediatric neurologist from UNC and we talked some about Sweets. Of course, Sweets wasn't there, and she didn't see her clinically, but she gave me some things that I might want to look into based on my description. One was developmental coordination disorder. I looked that up and I'm not so sure she is *that* uncoordinated, but the doc said that it often presents with apraxia of speech as well. I looked up apraxia of speech and that sounds more like Sweets to me. It's hard to really know anything just from looking on the internet though. I asked Sweets' speech therapist what she thought about apraxia, and she said it is certainly a possibility for Sweets but that she wouldn't feel comfortable diagnosing apraxia at this age and would wait until she was 3. On the internet (again...) I have read several accounts of 2 year olds diagnosed with this though. I emailed the person who did our Duke speech eval about this and she said that they can test for it at 2. I would like to find someone local who is experienced with evaluating for this. It doesn't have to be at Duke, if there is someone else more suitable.
Her 2 year WCC is coming up this month, but I didn't know if I should ask the sub doc about this since she doesn't really know Sweets. Our regular ped will be out on maternity leave, but I am emailing her about it now.
Over the weekend, I happened to be at a party with a pediatric neurologist from UNC and we talked some about Sweets. Of course, Sweets wasn't there, and she didn't see her clinically, but she gave me some things that I might want to look into based on my description. One was developmental coordination disorder. I looked that up and I'm not so sure she is *that* uncoordinated, but the doc said that it often presents with apraxia of speech as well. I looked up apraxia of speech and that sounds more like Sweets to me. It's hard to really know anything just from looking on the internet though. I asked Sweets' speech therapist what she thought about apraxia, and she said it is certainly a possibility for Sweets but that she wouldn't feel comfortable diagnosing apraxia at this age and would wait until she was 3. On the internet (again...) I have read several accounts of 2 year olds diagnosed with this though. I emailed the person who did our Duke speech eval about this and she said that they can test for it at 2. I would like to find someone local who is experienced with evaluating for this. It doesn't have to be at Duke, if there is someone else more suitable.
Her 2 year WCC is coming up this month, but I didn't know if I should ask the sub doc about this since she doesn't really know Sweets. Our regular ped will be out on maternity leave, but I am emailing her about it now.
Wednesday, March 16, 2011
Potty!
I have been thinking for a few months that Sweets may potty train pretty soon. She signs CHANGE when she wants you to change her diaper, or will even go fetch a clean diaper and bring it to you. She also signs DIAPER and POTTY. She has been going for long stretches between wet diapers, and even wakes up dry from nights and naps more and more fequently. Munchkin potty trained right around this age too - she was in unders full-time during the day the week of her 2nd birthday. Sweets will turn two in 6 weeks.
When I first mentioned to my husband that I thought Sweets might be ready to potty train soon, he was pretty skeptical. He said "She's late doing everything else, I don't know what makes you think she's going to potty train." I just took the baby potty out from storage and showed it to her. Some time later, we were talking about Sweets' delays, and my husband said that he feared that we would start to expect less from her, and that she would therefore do less. I said, you mean like potty training? After that he was 100% supportive of potty training!
So I brought the baby potty into the living room and we have been leaving her naked from the waist down at home more often. She has been sitting on the potty at diaper changes, but she hasn't "done" anything in it yet. That is up until last night!
She was in the bath and started signing POTTY and frantically making noises - "Mmmmh! Mmmmh!" I didn't want her to potty in the bath, so I took her out and dried her off and sat her on the potty. She sat, but didn't go. When she stood up, she held her knees together and grabbed her crotch and made the frantic "Mmmmh! Mmmmh!" noises again. Then she sat and stood up and repeated the noises. This cycle went on for about 20 minutes interspersed with some playing. It was like she knew she had to go, but she didn't really know what to do about it and was trying to hold it in. Eventually, she got so frantic that I sat her on the potty and played "If You're Happy And You Know It" with her to occupy her hands and try to keep her still. And when she got up, there was a big poop in the potty!
We worry about her cognitive abilities, because she still doesn't succeed at the shape sorter or simple puzzles. But she can communicate many things through signing, which shows us that she understands language and remembers the signs and knows how to use them. So maybe she will be able to potty train just fine, despite her other delays!
When I first mentioned to my husband that I thought Sweets might be ready to potty train soon, he was pretty skeptical. He said "She's late doing everything else, I don't know what makes you think she's going to potty train." I just took the baby potty out from storage and showed it to her. Some time later, we were talking about Sweets' delays, and my husband said that he feared that we would start to expect less from her, and that she would therefore do less. I said, you mean like potty training? After that he was 100% supportive of potty training!
So I brought the baby potty into the living room and we have been leaving her naked from the waist down at home more often. She has been sitting on the potty at diaper changes, but she hasn't "done" anything in it yet. That is up until last night!
She was in the bath and started signing POTTY and frantically making noises - "Mmmmh! Mmmmh!" I didn't want her to potty in the bath, so I took her out and dried her off and sat her on the potty. She sat, but didn't go. When she stood up, she held her knees together and grabbed her crotch and made the frantic "Mmmmh! Mmmmh!" noises again. Then she sat and stood up and repeated the noises. This cycle went on for about 20 minutes interspersed with some playing. It was like she knew she had to go, but she didn't really know what to do about it and was trying to hold it in. Eventually, she got so frantic that I sat her on the potty and played "If You're Happy And You Know It" with her to occupy her hands and try to keep her still. And when she got up, there was a big poop in the potty!
We worry about her cognitive abilities, because she still doesn't succeed at the shape sorter or simple puzzles. But she can communicate many things through signing, which shows us that she understands language and remembers the signs and knows how to use them. So maybe she will be able to potty train just fine, despite her other delays!
Monday, March 14, 2011
orthotics and more, updates
We just had another PT eval and Sweets tested at 20 months for Stationary (37%), 17 months for Locomotion (5%) and 18 months for Manipulation (16%). Her overall gross motor is 10%. Her PT said that she thinks that the type of test that was used judges her more harshly than where she really is though.
Her balance is quite poor though, and she falls frequently. The PT has recommended that we have her fit for orthotics for her feet because she pronates when she walks - turns her feet to the edge, which affects her balance. The orthotics would fit in her shoe and would prevent her from rolling her feet. The PT thinks that we will probably get Sure Steps, but the orthotist will make the final call as to what kind would be best.
Sweets also had an OT eval last week because our coordinator saw that she wasn't able to do the shape sorter when she observed a recent developmental therapy session. In the OT eval, Sweets was able to pick up pennies off the floor just fine and put them in the slot in a piggy bank with either hand. The assessment showed that her problem is not really with her fine motor skills as much as with her cognitive skills. She doesn't perform the shape sorter or puzzle well because she doesn't know where the object should go, not because her hands can't manipulate it properly. So, she doesn't need OT therapy, and will just continue with the developmental therapy with a new goal of working on problem solving toys and helping her persist to her level of abilities without giving up.
Our speech visits are going up from two 30-minute sessions per week to two 45-minute sessions. It costs us the same either way, so that's nice.
We have been dealing with a conflict regarding the billing for the therapies. We started 9 months ago and this is the first time we've gotten a bill for anything, and we really had to harrass them for it. But when I got it, it was not the amount that I expected, it was about double. I called them up and told them they did my bill wrong, and they said that I was the one who was wrong. Both therapy agencies did it the same way, so I was thinking that they must be right and I've been wrong this whole time about how much this was going to cost us. I complained to my early intervention coordinator and after 2 weeks they got back to me and told me I was right and the agencies were wrong and they were going to make sure they fixed it for me. So that is nice. I wonder how many people they are messing up the bills on that don't even realize. They were basically double billing my insurance and the state for the same amount, so that they were collecting about 1.5 times what they should.
We are going to run out of insurance-covered therapy visits. We only get 75 per year (increased over 50 last year because we upped our insurance option) and we are using 3 per week now. She actually gets 4 per week - 2 speech, 1 PT, 1 developmental - but the developmental is free for us. So we are going to go off the insurance for a while and just pay out of pocket so that we don't use up all of our visits right away. Right now we are still on a 40% sliding scale rate, but we think that will go up next time they re-evaluate us in June, so we figure we should pay the out-of-pocket now rather than later.
We are still looking into the developmental preschool for her, but we are finding that their therapists aren't on our insurance, so that is a complication. They say that we CAN use our own therapists, but they really think it's better if we use theirs.
Her balance is quite poor though, and she falls frequently. The PT has recommended that we have her fit for orthotics for her feet because she pronates when she walks - turns her feet to the edge, which affects her balance. The orthotics would fit in her shoe and would prevent her from rolling her feet. The PT thinks that we will probably get Sure Steps, but the orthotist will make the final call as to what kind would be best.
Sweets also had an OT eval last week because our coordinator saw that she wasn't able to do the shape sorter when she observed a recent developmental therapy session. In the OT eval, Sweets was able to pick up pennies off the floor just fine and put them in the slot in a piggy bank with either hand. The assessment showed that her problem is not really with her fine motor skills as much as with her cognitive skills. She doesn't perform the shape sorter or puzzle well because she doesn't know where the object should go, not because her hands can't manipulate it properly. So, she doesn't need OT therapy, and will just continue with the developmental therapy with a new goal of working on problem solving toys and helping her persist to her level of abilities without giving up.
Our speech visits are going up from two 30-minute sessions per week to two 45-minute sessions. It costs us the same either way, so that's nice.
We have been dealing with a conflict regarding the billing for the therapies. We started 9 months ago and this is the first time we've gotten a bill for anything, and we really had to harrass them for it. But when I got it, it was not the amount that I expected, it was about double. I called them up and told them they did my bill wrong, and they said that I was the one who was wrong. Both therapy agencies did it the same way, so I was thinking that they must be right and I've been wrong this whole time about how much this was going to cost us. I complained to my early intervention coordinator and after 2 weeks they got back to me and told me I was right and the agencies were wrong and they were going to make sure they fixed it for me. So that is nice. I wonder how many people they are messing up the bills on that don't even realize. They were basically double billing my insurance and the state for the same amount, so that they were collecting about 1.5 times what they should.
We are going to run out of insurance-covered therapy visits. We only get 75 per year (increased over 50 last year because we upped our insurance option) and we are using 3 per week now. She actually gets 4 per week - 2 speech, 1 PT, 1 developmental - but the developmental is free for us. So we are going to go off the insurance for a while and just pay out of pocket so that we don't use up all of our visits right away. Right now we are still on a 40% sliding scale rate, but we think that will go up next time they re-evaluate us in June, so we figure we should pay the out-of-pocket now rather than later.
We are still looking into the developmental preschool for her, but we are finding that their therapists aren't on our insurance, so that is a complication. They say that we CAN use our own therapists, but they really think it's better if we use theirs.
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