PT Eval - 33 months

Sweets had a PT eval yesterday. It had been almost a year since the last one, and about 8 months since we quit PT. My main questions were where her current ability levels are and whether she still needs to wear the orthotics.

The outcome is that she will continue with the orthotics, and she scored lower than I expected for her current ability levels.

Stationary skills: standard score of 7, age equivalent 18 months, 16%
Locomotion skills: standard score of 6, age equivalent 23 months, 9%
Object manipulation skills: standard score of 5, age equivalent 20 months, 5%
Overall: gross motor quotient of 74, 4%

Surprisingly, this is about the same percentile that she scored for PT when she was about 13 months old, when she couldn't walk, cruise, or crawl.

At 13 months, she scored age equivalent to 9 months, which was <5th percentile. Now at 33 months, she is scoring 18-23 months age equivalent, which is actually a higher percentage of delay by age.

The main impediments that were noted were that Sweets could not jump up off the floor or the trampoline (she tries, but only her heels get off the ground), and she could not stand on one leg for 3 seconds. She also may have scored lower on ball activities because she isn't really that interested in balls. Though by my observation I felt like she did just fine with all the ball activities they asked her to do (pick it up, throw it, kick it, etc). I guess that's why I'm not a PT though, since she seems fine to me.

Overall, I had felt like Sweets was doing fine with PT and would not qualify for anything, but it turns out she is still pretty delayed. I guess once a kid knows how to walk, we stop worrying about PT. I feel very surprised that she actually scored worse on her PT than she did on speech. I feel like her speech delay is much more obvious and much more of a problem.

The PT eval discussed options for therapy with me. We won't be taking her to the clinic because it is very expensive to go there. We went there 4 times when Sweets was 13 months old, until early intervention kicked in, and it cost us $75 per session, which is ridiculous.

I mentioned that if she qualifies for IEP, that hopefully she could get PT through the school. The evaluator said that even with delay, the school often won't provide PT unless the child can't access all areas of the school and playground. As far as I know though, Sweets can access her school and playground just fine, so she still may not qualify for services.

The other option is for us to find a PT who will see her at school the way her early intervention PT did, and we will just pay it through insurance. The issue here is that we want to make sure we have enough insurance visits for the speech therapy, so that will depend on what the school provides for speech. Even if the school provides speech therapy, our docs are recommending PROMPT therapy once per week, which we would have to provide separately somehow because I don't think the school has access to this kind of therapy. We only have 75 combined therapy visits per year, and we would rather use them for speech than PT if we have to choose.

So I'm still not even sure if we are going to do PT for her at all at this point. Though I feel like we should now that I've seen her low scores.

Grumpy Morning, Happy Morning

I don't know how she does it, but on weekends Sweets is like an alarm clock. She wakes up right at 7am, no matter when she went to bed.

But on weekdays, I often have to wake her up to get her ready for daycare.

This morning, I went to wake her up at 7:15, and she was grumpy!

She didn't want to get dressed, she didn't want to eat breakfast. But she did ask to nurse.

Sweets hasn't been nursing in the morning every day lately. She used to always nurse twice per day: in the morning when we get up and when we got home from work. But lately, she skips one or even both of these some days. She skips the morning nursing more often, and I'd say she only nurses in the morning about 60% of the time lately.

But this morning, she wanted to nurse. And she didn't want to nurse in this seat, it had to be in that seat.

THAT ONE!

I'm telling you, grumpy.

She nursed for maybe 20 minutes and got progressively happier and happier and more giggly and playful as she switched back and forth a few times between sides.

When she was done, she started just looking up at me with the most smiley, happy face! She was just so adorable!

I looked down at her and I said "Oh, I just love you!"

And she looked back at me and said "Yah Yoo Doo."

Love You Too.

And my heart melted.

And then she happily got down and went to the kitchen to eat the waffle that was waiting for her. Then she trotted over to the door, ready to go, and said happily "Ass Doh!" (Let's Go!)

I'm so glad we are still nursing. We can still turn a grumpy morning into a happy morning, just like that!

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This post is cross-posted from my breastfeeding blog, Lactation Narration.

Potty, Day 8

It has now been a week since Sweets just up and decided to start using the potty. She has been almost 100% at home since then (was 0% previously!).

Daycare was another story. She wasn't going at daycare at all all week. I think that she didn't like their potty - they can't use the little plastic potty like we have at home, and they don't even have a seat reducer. It is a child-size potty, but I guess she just didn't like it. I think it was also a problem because at home, when she has to go she just runs over to the potty and does it - she has free access at all times. At daycare, she has to tell the teacher, then they have to take her to the bathroom, then sit her on the potty. It just takes a lot longer, and she has to communicate it to them first.

But on Friday, they reported that she did actually use the potty at daycare, twice! Yay!

Then, this weekend, we took her out and about all sorts of places, and we brought her in unders. She now actively does NOT want to wear a diaper, ever. It was risky, but we packed a few changes of clothes, put a pee pee pad in the carseat, and off we went. And she did great! She told me she had to go several times, and successfully used the toilets in public restrooms and other people's houses all weekend! I did not even need to change her clothes at all!

She was also able to go when I put her on the potty pre-emptively before we left, so she has really mastered some control now! It is amazing how much progress she has made in the past week!

I washed diapers last night for the whole week and only had 7! (We still need them for sleep)

I feel pretty confident that she is going to use the potty all day at daycare now. I guess we'll find out when I pick her up today!

Developmental Ped

We had our first appointment with the developmental ped today. She was very nice, and was assisted by a medical resident.

Sweets wanted to be naked for this visit for some reason, but that didn't seem to phase anyone! I wasn't sure if I should try to make her wear her clothes, or just let her be comfortable so she could get on with the eval. I chose the latter though. It started with just her shirt coming off in the waiting room, and I did put that back on her then. I mean, at least let's get into the private room first! She stripped right down to her underwear, but did keep that on at least... for a good while anyway. At some point she did take off her unders too, and just did the rest of the eval completely naked. I dunno... I didn't fight it... I kept thinking that maybe it had something to do with using the potty (we had brought her little potty with us), but she didn't use the potty at all the entire time.

Anyway, the doc did a cognitive eval on her, which she scored 84 on. I thought that was about what she had scored in the past, but the doc pointed out that she had actually scored a 90 at 24 months. I don't know how I had forgotten that, given that a 90 puts her in "normal" range! At 84, she is just over 1 standard deviation below the mean. Which means it is significant, but not significant to qualify for services... (that requires 1.5 standard deviations). The doc said that her test was more of a "quick and dirty" eval, and that she will refer us for a full eval with a psychologist for a better eval.

The doc also did a neurological eval, which included checking her muscle tone. This was because we had mentioned that Sweets is still wearing orthotics, but we didn't know if she really needed them anymore. The doc said that she can feel that she is still hypotonic, so she thinks that yes, we should continue with the orthotics. But, again, she referred us to get a more complete PT eval as well.

So, the plan is that we will get these two evals, and all of the school evals, and then come back in April with all of the results and regroup at that time. All in all, I think it went pretty well. And maybe next time my kid can keep her clothes on!

"I want to go downstairs, Mommy"

My child said this sentence. My husband and I looked at each other, shocked, and then counted the words on our fingers. I.. want... to... go... downstairs... Mommy... 6 words! Wow! For a child who usually only uses 2 words together, but increasingly 3, six words is a lot!

I have noticed that in the past week, Sweets has been saying more things and putting more words together. The same week that she also decided she was going to use the potty. And she also became suddenly interested in the TV. She will go up and point to the TV and ask for "Raffi" or "Dora" now, where she never cared a lick about TV before.

I know that she seems to do new things in spurts. It's how she's always been. She didn't really do new things between 9 and 18 months, and then at 18 months she just started saying words, signing, and taking steps!

Then she plateaued for a few months, then had another big spurt at 26 months. In no time she went from about 10 words to about 100 words! And then she plateaued again.

Now she is 33 months, and I'm thinking we are seeing another spurt!

Potty Time!

The most amazing thing has happened this weekend! Sweets has up and decided to start using the potty!

Up until now, she has been going diaperless at home when she wants to for about a year now. And she is able to mostly stay dry when she does this. When she doesn't have her diaper on and she has to go, she will ask for a diaper. If we try to sit her on the potty instead, she just sits and won't go. If we don't give her a diaper, she'll just wet on the floor. She does sit on the potty pretty regularly, though she has never actually GONE potty, she just SITS.

Until this weekend anyway!

When I changed her diaper on Saturday evening around 5:30pm, she didn't want a new diaper on. Which is not unusual. I put unders on her. Around 8:30pm, she looked up at me and said "Pee Pee!", which I expected to mean that she had wet herself. But she was dry. So I asked her, "Do you want to pee pee on the potty?" and she said "Pee Pee on Potty". So I put her on the potty.

And... she PEED! ON the potty!!

First Time!

We were all SOOO excited!

Overnight, she woke up and wanted to sit on the potty again. She said she had to poop this time. I don't know if she actually did though, because I was half asleep and didn't turn on the light.

Then today, she has been diaperless all day except for her nap, and she has used the potty 5 times, including a poop!

It's amazing! It's like she just decided that she was going to start using the potty, so now she does it!

Now I wonder how this will work out at daycare, where she will have less immediate access to the potty. She will have to ask a teacher to take her, which may not give her enough time to make it in time. Today she has sometimes announced she had to go first, but other times she just went and sat down on the potty and went by herself.

I plan to bring many changes of clothes for her and see how it goes!

IEP referral

Today was my first IEP meeting. It was just the referral meeting, but we did more than I expected. We reviewed all of Sweets' history with early intervention, and decided which evaluations the school will do.

Besides me, the other people at the meeting were:
the daycare teacher (certified birth-kindergarden special education),
the daycare director (developmental daycare),
the early intervention service coordinator,
the local school system preschool coordinator (who also served as the school SLP),
the school psychologist, and
the school physical therapist.

We discussed strengths and concerns, including play skills, gross motor, and communication skills. We discussed her current and recent services through early intervention.

We also discussed the recent apraxia eval and the possibility of an apraxia diagnosis for Sweets, though I did not give them the report from this eval. Sweets had scored a 79 composite score on this eval (9%). I have read that the cutoff for eligibility is actually below 78, so I am afraid that this eval could actually make it harder to qualify. Someone in the meeting actually said it has to be below a 70 for a 30% delay, but I don't think that was correct. The school will do their own eval anyway. They would like to know which tests were done so that they don't repeat the same ones. They said that it is not accurate to use the same test within a year.

In the end, they decided they will basically just do a full panel of evals on Sweets, not just the communication and educational evals that I thought they were planning. Here is the list:

Physical Health (vision, hearing, etc)
Educational (academic achievement)
Psycological
Intellectual Assessment (they will do one that does not rely on as much language)
Social Appraisal
Speech/Language
Motor (fine and gross)
Adaptive Behavior (self-help)
Sensory Processing Appraisal

They will do all of these evals at the daycare, without me present. That is different for me; I have been present at all of her other evals. They usually have lots of questions for me to answer. This time they gave me a stack of paperwork to fill out instead. I requested to get the eval reports before the IEP meeting so that I have time to review them, and I provided my email address for them to send them electronically. Apparently otherwise they would just give them to me at the meeting. I can imagine I would have time to thoroughly read all those reports right there. Of course I want to get them ahead of time! This way I will get them all with at least a week's notice before the IEP meeting. At the next meeting, we will discuss the reports, decided whether she is eligible for IEP, and if so, create the plan. The meeting is scheduled for March 30, which is almost a month before her birthday, giving us plenty of time, so I am happy about that.

I am still worried that she won't even qualify for services, but the daycare director seems confident that she will. It does seem like this team will try to qualify her if they can. They do not seem resistant or uncooperative at all. I think I have just heard so many stories of struggles with IEP teams that I was prepared to have to fight them, but it doesn't look like it will be that way.

Good news on the developmental ped

Three posts in a row... when it rains it pours in blog land!

Anyway, just a short note to say that the developmental peds office called today and said they can get us in this month! Which is amazing because they told me that based on the waiting list we wouldn't get in until June. I guess they must have had a cancellation!

I'm really happy that we'll get in and have input from this doc before we have to do the IEP. I'm hoping she will do some of her own evals, and recommend which evals and services we should ask for from the school. She can also weigh in on apraxia.

The initial appointment is supposed to take 2.5-3 hours, so I think they will do a pretty comprehensive eval. She also said that if they can't get it all done in one day that they can book a return visit for the next week. I'm not sure how long Sweets will participate, so that is good.

I think I thanked the receptionist for the appointment 5 times on the phone!

Apraxia... again

Sweets had another speech eval today. She will be 3 in April, so we are getting an independent eval in preparation for the IEP referral.

Today's eval said she would diagnose Sweets with apraxia. On the intake history, I had written down that she's been tested for this, that, and the other (including apraxia) and they have all been ruled out. So at the end, when she said she would call it apraxia, I was surprised. I thought we had already pretty much ruled that out last year!

The CDSA eval had said that there are some features consistent with apraxia, but others that were not, but the Duke eval had said that she did NOT think that Sweets had apraxia.

This eval said she would recommend a therapist trained in PROMPT therapy, which I'm sure my current therapist is not since she's in her training year. We are getting ready for transition to IEP, and I am not sure if/what she will qualify for under the school system because I know it is harder to qualify for that than it is for the early intervention that she's in now. And I don't know if the school can provide a PROMPT trained therapist either.

I have some concern that the evaluator was biased to apraxia and PROMPT because there are very few therapists around who are trained in PROMPT, and she is one of them. Not to say that she's necessarily trying to drum up business, just that she may have bias towards what she works on a lot.

The scores from today's eval were 21 months in receptive and 23 months in expressive, so that puts her right on the border of the 30% delay that is required to qualify. She is 32.5 months.

We are going to get a 2nd opinion on apraxia at Duke in Feb, and the school system will do their own eval for the IEP too, so we will have a few opinions to go on.

On to IEP

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.

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!

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!

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.

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.

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.

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.

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...

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

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!

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.