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.

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.

Tuesday, April 5, 2011


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.