neurology

We had a neurology appointment and while the doc said he didn't see anything really concerning in Sweets' exam, he did order a blood test for a microarray. She has unexplained developmental delay, so I guess it's possible that this test might detect a reason behind it.

child led therapy?

We have a developmental therapist who I don't really love, but I don't think she's necessarily bad either. I just think that she's not very child-led, and therefore misses opportunities to make the therapy more enjoyable for Sweets. I don't sit in on all the sessions, so maybe things are different when I'm not there too.

Example: Last time, she had it on her agenda to work on stacking with blocks. Sweets was not really interested in doing that and was trying to play a mimicking game where she was copying the sounds the therapist was making. The therapist let her do this for a minute, but then insisted that she work on blocks, so Sweets screamed and threw a tantrum. She did eventually work on the blocks though, but she also had a really hard time with it because they were lego-style blocks, and she can barely stack regular square blocks.

When the therapist came in, Sweets immediately started crying and was tearful for most of the session. The therapist said, "That's because she knows that I make her work!" In some ways, I understand that making her do these things even when she doesn't want to may be helpful for learning the skills. I feel a little uneasy about it, but then I wonder if she's right and that's what's necessary. But it just seems to me like it doesn't have to be a negative experience. She could have followed her lead and used the mimicking game for therapy purposes - at least that's what I would have done.

So, I really wonder, how child-led can I reasonably expect the therapist to be with her?

speech therapy goals

I am feeling much better about our speech therapist now. Today I got a "Plan of Care" packet from her, which I have not gotten from our other therapists, but now I want to ask for it. It details her background for therapy and the goals they will be working on. It says they are working with a diagnosis of "Mixed Expressive-Receptive Language Delay", and "Severe" is marked as the degree of delay. That's the first I've seen anyone mark her with any kind of diagnosis, so that seems like progress, even if it's just descriptive.

Her short-term goals seem specific enough, so I thought that was good too.
*Expand her sound repertoire and frequency of vocalization by imitation of sounds during floortime activities with 80% accuracy across 3 consecutive sessions
*combine single sounds to form syllables 5 times during a therapy session with 80% accuracy
*use signs along with sounds to request "more," signal "all done" or to choose between activities with 80% accuracy across 3 consecutive sessions
*identify common objects in her environment by pointing, matching, or choosing from a choice of two with 80% accuracy across 3 consecutive sessions

In related news, she is doing really well with walking and is now walking about 50% of the time. She impressed everyone at LLL last night because it was the first time they have seen her walk. :)

speech therapy looking up

I attended the speech therapy session today and am feeling better about the speech therapist. She seemed very positive and cheerful. I feel like maybe the negativity I perceived when I talked to the early intervention coordinator was maybe just a miscommunication through a chain of people. In therapy today, the therapist tried to get Sweets to say "ba" for different things that start with B - ball, book, block, bubbles. We know she can say "ba ba" for bye-bye, so the therapist is trying to expand on that. Sweets didn't do it, but the therapist was fine and I saw what she was going for. So, I'm feeling good again. :)

speech therapy twice per week

This morning I signed the papers for her to be changed to two 30 minute sessions per week instead of one hour long session. I will have to pay the copay for each one though, so that's double the copays. We are going to try this for 2-3 months and then probably move back to once per week. Hopefully by then she will be comfortable enough with the therapist to work with her for longer. My husband or I are also going to try to attend her therapies as much as we can at the daycare. I am already trying to attend her other therapies at least once per month each. So at this point she's going to have 4 therapies per week: 2 speech (30 min) + 1 physical (60 min) + 1 developmental (60 min).

speech therapy snag

Hmm. So here's the report from the first therapy session.

The speech therapist came right after the developmental therapist - they basically just did a hand-off. The speech therapist was new to Sweets and was alone with her because they were at daycare, so I wasn't there. We expect that she's not going to take to a stranger right away - it took about a month for her to get comfortable with the other therapists. In the speech therapist's note to me, she mentioned that it took Sweets a little while to warm up, but that that's expected. Also that she didn't make very many noises for her during therapy, but it's prob b/c she didn't know her. Okay, seemed pretty normal to me. It sounded like it went as you'd expect.

Today I get a call from my early intervention coordinator saying that the speech therapist recommends that we cut the sessions from 1 hr to 45 mins b/c she doesn't think that Sweets will be able to do therapy for that long, and she also had concerns about how long it will take her to become comfortable. Which I don't get, because that's not really what her note to me conveyed. :( For one thing, she piggy-backed right after another therapy session, so if she thinks that my daughter can't do therapy for that long, I would think that the first thing to do would be to change the time so that it's not right after the other therapy (which I had told her when the other therapists come).

Anyway, the EI coordinator said that it was my choice. We can stick with the 1 hr sessions for a while and see how it goes, we can switch to 45 min sessions, or she also suggested doing two 30 minute sessions per week. I thought that two sessions per week would be better for Sweets getting used to the therapist more quickly, but I wonder if that means I will have to pay double the copay - one for each visit. The coordinator was concerned that they wouldn't get much done b/c if the session is 30 mins but it takes 20 mins for her to warm up, they won't have much time left to do much therapy. So I don't know about that. But I'd rather do the split session I think because then we still get the full 60 minutes per week, and it seems like more therapy wouldn't be a bad thing, and I think after a few weeks she will be used to the therapist anyway. Then the coordinator said that she doesn't know if we would be approved for the two 30 min sessions anyway though and that it's not what they usually do. Hello - she's the one who suggested it in the first place! Argh. So, she's going to check it out and see if that's a possibility and how it would work financially, etc.

Anyway, sorry for rambling. It's really just a vent I suppose. But now I feel like I'm already starting out on the wrong foot with this therapist.

speech therapy starts today

Sweets is 18 months and is delayed for expressive and receptive language and also gross motor. In the past few weeks she is starting to do a lot of new things though. She is starting to walk and now walks almost half the time and crawls half the time. She is also starting to say some new sounds and even a few words! She has doubled the different sounds she makes just recently, adding several consonants and a new vowel as well - was just MA and BA until very recently. She can now say something that sounds like "Hi" and "Bye Bye" and "Uh Oh" in context. Funny, because Munchkin's first word was "Uh Oh" too! We also sign with her and she has several new signs lately too. She's just having a growth explosion! It's very exciting!

So, she has been getting therapy through early intervention for 4 months now. She has been getting physical therapy and developmental therapy each once per week. We wanted speech therapy, but they said at the time that she was too young. We pushed again, and now we are getting speech therapy! She starts today! Woo hoo!

Autism clinic

Sweets had her autism clinic appointment today. The doc said that while there are a few markers, like not pointing appropriately, that in the big picture she has very strong social skills (enjoys peek-a-boo, chasing, kissing, waving, etc) and that they do not see indication of autism.

As for what it is, if not autism, they still don't know. They want to see her in speech therapy, which she is scheduled to start any time, probably next week, anyway. They noted that she favors one side, and asked the neurologist to step in. He did some manipulations and reflex tests on her, and watched her try to walk with no pants on (I guess to watch her legs?). She doesn't walk independently yet (just takes a few steps), so I held her hands so she could walk for that test. He only saw her for like 5 mins, but he said he didn't really see anything alarming. He said we should still keep our full neurology eval in December though. He also mentioned that we could do an MRI on her, but that it's hard at this age and that she would have to be under anesthesia, so they'd rather wait until she's two.

The overall take-home message was just wait and see how she does with therapy. Really no new information, since we didn't really think she had autism anyway. Just confirmation of that.

autism eval coming up

Sweets is 18 months and will be having an eval this week at the autism clinic. I don't really think that's what she has, but that's where our ped has referred us. I hope that they can at least refer us to another specialist that might be more what we need, because I don't really know where we should be going. We do have an appointment with a neurologist in December, but I don't know if that's the right place for us either.

My daughter doesn't talk at all, or even make many varied types of noises - BA and MA are her staples, but she has recently started making sounds that approach GA and LA and P. She tests delayed for receptive and expressive language. She points, but not with meaning, like she knows when we expect her to point to something, she just doesn't know to what so she points randomly. She is not very interested in toys, but she loves any kind of paper to eat and tear up, particularly tissues or toilet paper. But, she is definitely social and cuddly. She asks for kisses by making the kissy face, she loves chasing and peekaboo, she smiles and makes eye contact. So that's why I didn't think autism clinic was really the right place for us because she doesn't really have any social issues. I mean, just because she has language delay, doesn't mean autism right? Or maybe I just don't know that much about differences on the spectrum. Oh, and she also has gross motor/tone/balance issues and doesn't walk yet (but is very close I think!).

late walkers

My daughter is 17 months and not walking yet. She qualifies for and recieves physical therapy from the state once per week.

When we went to our 12 month well-child checkup, her ped asked me lots of questions about is she doing this, is she doing that, and she pretty much wasn't doing any of it. At her 9 month check up, we had had no concerns though. At 12 months, she was getting around mostly by creeping on her tummy. She could crawl, but just didn't really do it more than about 3 steps. We were referred to a PT evaluation, and from there to the state program. They said she has weak core muscles and poor balance. We were advised a few things, such as not to put shoes or socks on her at all unless absolutely necessary. To get rid of anything like a walker (the kind you sit in, not the kind you push), an exersaucer, or a jumper, and that she should only ever spend 10 minutes at a time in one if we had to use one. They also gave us specific exercises to do with her and the therapist sees her once per week at her daycare. Now, at 17 months, she is able to stand unassisted for a few seconds, and the therapist says that she will take 2 steps in therapy, though I haven't ever seen her do it myself and we work on it every night.

My daughter is also delayed in other things besides motor. She is very delayed for communication as well. She doesn't say any words, or even very many different sounds. She also doesn't do things like point to ask for things. She does not follow simple directions (ie "get the book"). She doesn't really play with toys - she would much rather rip up paper and eat it! She tested low cognitively, but it's hard to tell at this point if that is due to the lack of communication. She receives therapy from the state for these issues as well. We don't know at this point if she is "just a late bloomer" as many people like to say, or if she has other issues going on. Her pediatrician has done some blood tests for certain conditions and all have come back as normal. Now we are referred to specialists for more evaluations and tests, but it takes a long time to get in so we are just waiting for our appointments. For now, she receives therapies and we figure that even if she's "just a late bloomer", it can't hurt to give her the therapies.

One thing that the docs have emphasized to me is that if she was only delayed in one area, then they would NOT be worried about it. So if she was not walking, but she was doing everything else just fine, or if she was not talking, but doing everything else, then they would not be doing this testing. It is only because she has "global" delays that we are being tested.

hard shoes?

Sweets is 15 months old. She has motor, communication, and cognitive delays with no diagnosis yet. She sees a physical therapist and a developmental therapist.

She is cruising but not walking, but is almost always on her toes. She has weak core muscles and poor balance. Our first physical therapist told me not to put shoes on her at all, that if I had to put shoes on her they should be soft shoes (like Robeez), and that barefoot is definitely best. She said that while hard shoes might allow my daughter to walk better while in them in the short-term, that they would actually make it harder for her to develop the right muscles properly in the long-term because they do a lot of the work for her. She said to wait until my daughter was able walk well before using hard shoes. Since she told me that (over 2 months ago), my daughter has only been barefoot (hey, it's summer!).

Now, yesterday, her developmental therapist saw her and said that she strongly recommends putting hard shoes on her to help her learn to walk with flat feet. This is completely the opposite of what the other therapist said! So now I don't know what to do with this information, but I tend to favor the physical therapist over the developmental therapist since that is her specialty.

more waiting

It's hard for me not to have a diagnosis for Sweets. I just want to KNOW! I don't know why, it's not really going to change anything I don't think. I mean, she's getting her therapies now, and that's what's important. But I just want to know. It takes so long to even get in to see the specialists, and then to get the test results back. We finally got the chromosome test back after a month of waiting, and it was normal. Which is good, but we still don't know what's going on now. So now the ped referred us to the "autism clinic" even though she doesn't suspect autism. It will just get us in front of a developmental specialist. It's going to take months just to get in the door there though, so more waiting is in store for us.

Current status - 13 months

She's not really talking at all. She makes some sounds, but only "a" vowels. Mostly "ba" or "aba" or "mamama". She also squeals and she can click her tongue. She doesn't make other kinds of noises, and she certainly doesn't make words. We also sign with our kids and she isn't signing either. She seems like she is maybe right on the cusp of that now though. She will sign MILK back to me when she is nursing now, but not to ask for it yet. At least I think so - she could just be waving! Speaking of which, she also doesn't gesture, or at least she wasn't when we started this. Now she does wave, but she doesn't do it responsively. She does it when she wants attention though because she knows people will smile and wave back. Sometimes if I am trying to get her to sign something, she will start waving, so I think she knows that I want her to do something. I have recently gotten her to try to clap, though she does it with her hands crooked instead of facing each other, but I think she's getting it. She doesn't point or show us things at all. She doesn't follow instructions at all. She couldn't pick out the ball or the book from the group of toys. She does seem to know her name. She takes things out of a container but doesn't put things in. When we started, the physical therapist said she was at 5% for gross motor. She wasn't really crawling on all fours when we started - she would a little bit, but she mostly pulled herself on her belly. Now she is crawling well. She isn't walking or anything, but she does pull to standing and she is beginning to try to cruise now. The PT said that she has weak core muscles and as a result uses a wide stance in all positions. She is interested in moving around, and gets around pretty quickly though. She is definitely making good progress with her motor skills since we started PT. They placed her abilities around the 9 month level. I don't know if she is just late in developing, or if it is something more than that.

Early Intervention - We qualify

The past few weeks, well, since her 12 month well-child check, I have been taking Sweets to a ton of evals, therapies, and appointments. Her ped had asked a bunch of questions like "Is she doing this or that" and she wasn't really doing any of it, so that's how this started. So Sweets finished her evals for the state early intervention program today. She was tested with a Bayley Scales test. She qualifies under communication, motor, and cognitive. She was fine for social-emotional and adaptive. She also passed her hearing test yesterday. She is scheduled for a speech eval next month, but now they are saying maybe she is still too young for it, so that might get cancelled.

Her scores on the Bayley were 71 for communication, 79 for motor, and 80 for cognitive. The scale is: 90-109 = Average; 80-89 = low average; 70-79 = delayed; <70 = significant delay

Now that she qualifies for the program, they will find us a physical therapist and a developmental therapist, who will each see her once per week at her daycare. They use a sliding scale for payment, and when I originally looked at it I thought there is no way we qualify for this at all, but it turns out that it is your income minus taxes, daycare, and healthcare. So we do qualify to pay only 40% of what is left after insurance.