Monday, January 30, 2012

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!

Friday, January 27, 2012

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!

Thursday, January 26, 2012

"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!

Sunday, January 22, 2012

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!

Friday, January 20, 2012

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)
Intellectual Assessment (they will do one that does not rely on as much language)
Social Appraisal
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.

Wednesday, January 11, 2012

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!

Tuesday, January 10, 2012

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.

Monday, January 9, 2012

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.