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Saturday, February 28, 2009


Well, there is some news for all my faithful blog readers (of which I am not really sure if there are many, let me know!). On Friday when I took Janey to school, her teacher stopped me as I was leaving and gave me a paper, and told me to come in for a minute. It turned out the paper was the long-awaited ABA evaluation, and that one of the special ed coordinators wanted to talk to me about it. I went down to talk to her before reading the paper, and found out it was recommending 6 hours a week of ABA for Janey, and they wanted me to sign an amendment to her IEP approving it. So of course I did, before even reading the report. Once I did read the report, I found it to be both extremely accurate and quite heartbreaking. The woman who observed her is I think the head of ABA services for Boston schools. She really seemed to understand Janey well with just an hour of observation. Basically it said that despite 1 1/2 years of school, lots of therapy,supportive teachers and special ed placement, Janey is "not accessing the cirruculum in any meaningful way". So what I knew to be basically true, she is learning nothing. It listed all the things she couldn't do, which are all goals on her IEP---body parts, shapes,numbers, letters, etc. It said she seemed driven by inner stimulation. They tried to get her to respond to her name and she failed, responding 0 out of 10 tries (that is an ABA type thing to do).

I guess the services are supposed to start right away. I really don't know how they will fit in 6 hours of ABA in a 12 1/2 hour week of school which already includes 6 other hours of therapy. It shows how ridiculas a half day of school is for her.

The nice part was how thrilled everyone was she was finally going to get more help. The special ed lady, the teachers, the secretaries, everyone seemed close to tears over how they love Janey and how they want her to get more help. It really made me happy but also made me feel a lot of other emotions, like that I should have fought to have it be sooner, that they should have helped it be sooner, that I still don't think ABA is the way to go for Janey, but she needs SOMETHING I know, that I am so tired of all of it.

I also found out yesterday that Janey could go to a swim thing each Sat. now at the Hyde Park Y. They call it a social swim, but you have to be in the water with your child, and I can't see her socializing much while she is swimming. Regardless, we went today, and the whole family is invited so the boys get to swim too. It's a great chance for us all to get a swim even if Janey doesn't get socialized, and it's free. She swam today with 3 floaties and holding a barbel type thing "by herself". She does love the water as do all of us. The boys swim like fishes now. They look so graceful in the water.

Janey is singing more again. She sings all the words of Black Sabbath songs that William plays, and sings show tunes I play, and most any songs she's ever heard. She might not answer to her name, but the girl sure can sing.

Tuesday, February 24, 2009

Janey's physical and my talk with her pediatrician

Janey had her 4 year physical yesterday (about half a year late). All the health things were fine, she is growing slowly but steadily. But I decided to pin down her doctor a little more about his opinion of her---I asked him what he thought I should be doing that I wasn't, whether she seemed typical of children with autism to him, what his impressions were. He spoke carefully and said to him she seemed like a child with global developmental delays, with some autistic characteristics, such as her speech patterns. In layman's terms global developmental delays means basically that she is retarded, to use an old and now not correct term. And surprisingly, even though he said that on my birthday, I was not really sad to hear that opinion. It is pretty similar to my own opinion. She certainly might be autistic, but she is also quite delayed in many ways. She seems to have a great deal of trouble learning some concepts, and does not catch on naturally to things like routines or natural flows of life. I asked him about ABA and he said he wasn't really the person to ask, but usually it is not as effective with kids that are globally delayed. That went along with a good book I had read about how children with autism learn, that in some cases you just can't push a child to learn things they are not ready to learn, and often the only way they have of reacting to that kind of pushing is to act out, as they can't explain "hey, this is just beyond me right now, don't push me" She does have her areas of strength, certainly music and perhaps auditory memory, and they might really help carry her far, but I think she might always be delayed to some extent.

Another thing I did was insist he give me the report from her seeing the neurologist a whole year ago. It wasn't that illuminating, mostly it was just her observations of Janey and what we told her about her, but at the very end it gave her guess as to the diagnosis---Landau Klippel syndrome, or acquired epileptic aphasia. That was later ruled out by her totally normal EEG and MRI. But it upset me to see it there. I had asked the neurologist right out if she thought Janey had Landau Klippel and she has said no, all the while, that was exactly what she thought. L-K is a serious disorder where all of a sudden a child loses the ability to communicate and starts having seizures. Sometimes it's self-limiting, and stops at in the teen years, after the damage has been done, but sometimes not. I'm glad that isn't what Janey has, but there are still so many unanswered questions and probably always will be.

Thursday, February 19, 2009

When do the compensatory rewards start rolling in?

I think for many years in life I really did feel like if something went very wrong for you, somehow there would be rewards or treats or compensations to balance out the wrong. I think it's because when you are a kid, that sort of happens---if you get very sick, you get some treats like soda you wouldn't otherwise have, if you miss a party at school, you might get a treat at home, if you cry because your sibling gets to go someplace you don't get to go, you might get to do something fun at home. I don't know why I thought adult life would be more that way. I guess it still hits me all the time that it just isn't. Maybe that is where the whole stupid Holland story comes in---you have a child with a disability, and things won't be what you expected, but you will get this whole OTHER bunch of great rewards----meeting all kinds of interesting new people, taking joy in every little achievement, etc. Well, I'm here to say right now I don't feel like I ever made it to Holland. Maybe I am still on the ship or airplane that will take me there some day.

I just felt so tired of being the mother of an autistic child today. We had my friend Fab over and it was great to see her, but I kept being struck by how I could not just ever relax and assume Janey was okay. I let my guard down for just a minute when she was in the kitchen alone, and she smeared her diaper all over. I let her play with the kids and something upsets her and she grabs hold of Fab's daughter and scares her, and me, I hope her daughter didn't realize that Janey was probably about to bite. Janey was happy to see Fab, but called her all kinds of random people's names, including my favorite for her to call other people, Mama. When Janey was upset with me today, she kept calling for Miss Heather, the OT at school.

I don't think Janey being autistic is making my life more rewarding. I probably am supposed to make myself think that, but I don't think it. I love her just how she is, but I can certainly picture a different Janey, one without autism, not that I would love that one any more than this one, but my life would be a lot, lot, lot, lot easier.

What is ABA?

I wanted to write about what ABA is, from my flawed and less than totally knowledgable perspective, and why I am not really pulling out all the holds to get Janey involved with it. It's short for Applied Behavioral Analysis. In the pure form, it consists of something called Discrete Trials. It works on teaching a child a piece of knowledge in a very small form---for example, if you wanted them to learn the shape circle, you would put a circle on a table and ask them to pick up the circle. If they did, fine, if they didn't, you would help them do it. You do this something like 10 times and record how well they do. Then you move on to another shape or another skill. The next day or whatever, you ask them the circle question again, and again record how they are doing, so you can see progress. You work your way up to things like giving them 10 shapes to choose from, or having them say the name, or them finding the big circle vs. the small one, etc.

It sounds pretty good, and of course most all parents and educators use versions of that. My problem with it is more the formality and the insistance on a certain routine, and the narrow focus. It's not a natural way to learn, I don't think. I also know with Janey's personality, we would spend many many hours with her rebelling, crying, running away, throwing things around, while the worker patiently just kept bringing her back and asking her the questions. I think it would involve a great deal of wasted time. And I don't think the knowledge would transfer. Janey DOES know a lot of things like what a circle is or what colors are---it's bringing out the knowledge in a natural way that is her issue. It's why I something think her problem is partly more one of word retrival than really of classic autism.

This all could be a bit of sour grapes as I can't seem to get things going with the schools for ABA. This is partly the cost. I have looked up lots of sites about ABA and many of those are run by autism moms who will stop at nothing to help their child (as if we all wouldn't) and who have what seems like unlimited funds to do so, or who live in rich school distracts. ABA costs a LOT to be done by trained people, and it takes a lot of time, and there is a shortage of people who can do it. It all adds up to much like so much in the US---we have graet health care, but access is the issue, and I am sure there are other parents like me who simply can't access the top notch help.

But I also feel that natural learning works better for Janey. And I think many kids with autism or related disorders get better as time goes on ON THEIR OWN, and it's hard to say whether many, many hours of drills helped or not. Sometimes I think they actually push the child into a peg---define the autism for them and make them more rigid. I am a bit of a rebel about the whole thing. I am still not sure Janey is really autistic. Maybe it's just a defense mechanism, but I don't know. I have seen William's progression. I have seen Janey make some giant steps. I have no idea how much more she can do.

Just a bit of morning thoughts and ranting!

Thursday, February 12, 2009

Various thoughts

Janey and I are both sick today. When she is sick, she sleeps for hours. I am realizing today how much I miss her company. She has been talking to me so much more, and although it's often random talk, I look forward to hearing what she has to say!

She got her first real report card, at least as real as preschool report cards go. It was a bit of a downer, of course. Most categories were a "NY" grade, which means "not yet". Some were D, which means developing, and a just a few were S, which means Secure. Her strongest area for sure is the arts, in which everything was an S, and so luckily, her school heavily emphasizes the arts. Her worst area was mathematical thinking, in which almost everything was an NY. I am not that upset over it, as it's a realistic report and they wrote such nice things in the comments section. But I am starting to worry about kindergarten. She won't be able to keep up, I don't think, and I don't want her just to be entertained by aides while the rest of the class learns. I think she can learn, if reached the right way, but what is the right way? How kids with autism learn academics is something I am having trouble finding info on, besides ABA which just isn't going to happen. I want her to learn all she can, while still being happy at school. I guess I will do a lot of it at home, just by talking and reading to her.

She is so lethargic today. In a way it's almost nice, because she wants to be held a lot and we can snuggle, which she usually isn't a bit fan of, but I hate to see her sick.

Saturday, February 7, 2009

Gearing up for Easter candy

For some reason, Easter seems to be Janey's favorite holiday. It's funny because I do very little for it---the Easter Bunny doesn't visit, we no longer go to church, I don't make much of a deal of it at all. The real draw for her is the chocolate bunnies. They are showing up in stores around now, and she craves one at all times (including the parts of the year where they are no-where to be found!) Today she also was asking for candy eggs. I think Easter seems like a holiday she can understand (from a secular point of view of course), involving lots of bunnies, chicks, candy and treats. It's a part of parenting I really enjoy---seeing how my kids pick their own interests and obsessions. It keeps life interesting.

Wednesday, February 4, 2009

Reports and questions

I got reports from Janey's 3 specialists today. The speech one was mixed---fairly positive, saying a lot that Janey was talking more in the last few weeks, which is true. But it's hard to measure and quantify her speech issues. They said she talks in an average of 5 word utterances, which is probably true, but those 5 words often make very little sense, or do in such a cryptic way you have to be a mind reader to understand them. They said she is starting to greet known adults by name and with a wave, which is once in a while true, but not consistantly at all. I love the speech therapist, it's not that I don't like what she says, more that it's just so hard to put on paper what is so off about Janey's talking. A good example today was her yelling out "I made a big Itsy bitsy Spider". I turned and saw she had wrapped yarn around her feet and was all tangled up, like a spider web. It's that round about way she often expresses herself. She also wanted her little cloth chair off her crib today, so just kept saying "Everybody sit in their seats" without motioning at all to the chair, I just figured it out by chance. It's like the connection that allow people to say things in a straightfoward way just aren't there.

The OT had a more discouraging report. Basically it said all Janey wants to do at OT is play with shaving cream, and she has little attention span for anything else, shows no pre-writing skills or drawing skills, etc. It made me want to say...put the damn shaving cream away for good, what does she need it for? She's not tactilely defensive, she is FINE with touching anything. I have never met the OT and hear only wonderful things about her, and I'm not trying to put her down, this is just frustration talking.

The PT was very positive and I agree there. I've seen so much progress in that area.

Janey says "I'm stuck" a million times a day. I think it's her description of how her mind feels when she gets upset--like the words are stuck, she's stuck in a feeling she doesn't want to have, a tune is stuck in her head, she is just stuck. Then she usually says "Body help me" (somebody help me). I wish I could do so better.

Tuesday, February 3, 2009


I have been feeling hopeful about Janey the last week. It's mostly her talking---it seems to be picking up in frequency. It's often not about anything in particular---a lot of it is still stories she tells to herself or random talk about Sonic or Sylvester or other characters she has never really seen but is interested in the sound of. But sometimes it's about slightly more concrete things, like more readily asking for what she wants to eat and more often picking up on what we say. Like tonight Tony said he was making pasta for dinner, and she perked right up and ran over to him and said "I want pasta!"

Also, today the after-school aide said she used the potty at school! That is the second time at school (vs. NEVER at home). She told Tony and I don't know all the details. I hope she asked to use it, that would be great to hear.

I've read a lot of places that autistic kids talking before age 5 is a very encouraging sign. I hope that's true in Janey's case.