Wednesday’s note from Teacher- R. had a difficult day. She fixated on two puppets a duck and an alligator.
Thursday’s note- R. imitated the gen ed kids (read neuro-typical) at recess, running, laughing and stopping and going. Took the class to the market on our walk and bought tomatoes and potatoes.
It is weird, R. has been playing more appropriately,but she has also been taking all her toys out and making what looks to me like a big mess.
I don’t mind the stuffed animals tossed around, or piled up, but her throwing everything else into a big pile makes me crazy. I don’t know why. I find myself either following her around compulsively cleaning up after her or totally ignoring it until the ABA therapists show up or the end of the day.
Seeing the books thrown around bothers me the most, so I did the most incredible (and obvious) thing. I told her to stop throwing the books. And you know what? She DID! She tried again a couple of minutes later, and when I told her not to throw the books, she listened. So I sat there and every couple of minutes I had to tell her not to throw the books, but I did not have to physically prompt her or force her to do anything. I sat on my butt and talked, and she listened and followed a direction. Of course as soon as I left the room she hurled the rest of the books and laughed.
I realize that the answer is to just keep a few books out and rotate them. I’ll work on that when she is at school.
R. is talking more and more. Most of it is still prompted, but she is saying more spontaneously. Open is still her default request word, but it is being replaced with other words. Last week she was saying Do this when she would hand lead me to something she wanted. And as further proof that ABA is rubbing off on her, she said do this and made Elmo jump and then Ernie jumped in imitation. This week she is saying want most often.
Sometimes she will really surprise me and answer a question. She was crying and obviously looking for a particular toy, I helped her go through all her stuffed animals and I kept asking her what she wanted. Finally she yelled Ernie. I found him under a book, mystery and crisis averted!
It is still most frustrating when I don’t know what she wants. She was clearly angry about something, she cried and then yelled you, you, you, you, you and looked me right in the eyes with an angry expression.
Well we did it, we survived the class field trip to the pumpkin patch. It went way better than I imagined it would. She walked three blocks to the street car stop, happily holding one of our hands. She started to cry when we stopped to wait for the street car. It was a bit chaotic, there were about 12 other special day class kids and their teachers, aids and parents, and they were older and larger. She wanted me to pick her up, which I managed to avoid with a hug and the new secret weapon.
The street car was very crowded, and R. started to cry once we were on board. We were surrounded by a lot of people who mostly managed to disappear once they got a good look at all of us. Seats magically appeared and I plopped R. into one. She sat the whole time. It sounds so silly to be so happy about this considering she takes a bus to and from school every day. But on the school bus she has a seat belt.
Then we walked four blocks to the pumpkin patch. That is definitely her world record for walking and hand holding. She was really happy, walking with a little spring in her step and making her giraffe dance. She started to cry and wanted me to pick her up a couple times when we first arrived at the pumpkin patch. But I managed to get out of it with more hugs and rocking her. It was very crowded, there were many school groups. We stood in line for the hay ride, but the teacher wisely decided it wasn’t going to be possible to wait. So we had 45 minutes to wander around a pumpkin patch.
R. was not impressed with the pumpkins. Her teacher tried to get her to pick a pumpkin, but she put back every one she was handed. I wonder if she thought it was just a whole bunch of vegetables. Her teacher also told us that she and another boy in class do not get along. They bother each other on purpose. They are both sensitive to being touched and of course they touch each other. She said that she has to keep them apart during circle time. This little boy was lining pumpkins up at the entrance of a hay bale tunnel and R. came along and put every one back.
I think her favorite part was a wooden horse in a tree. I’m not sure what the point is of having a horse in a tree. I looked around for a headless rider, but did not find one. I found a quiet spot and sat with her and gave her a snack and then it was time to go. The teacher has us go back on a bus which was a shorter walk. It was standing room only so I found a place to stand. R. sat down on a man’s lap! He was a young tough looking guy, but he smiled and gave up his seat. She sat like a bus riding veteran and walked back to the school like it was the easiest thing in the world.
A friend and I each attended different support groups for the first time. We both went there with the feeling we knew what we were doing for our children and left with quite a few questions. I do think it is valuable to connect with other special needs parents, there’s a world of information out there that only seems be transmitted by this secret society. I like to hear about other children and their therapies and activities. But sometimes it is hard not to get into this endless loop of worrying if the therapy that parent X mentioned or the activity that parent Y mentioned is the missing piece of our intervention. Never mind that we probably could not afford it and have no time in the schedule for anything else.
It can be difficult to make decisions about my child that could potentially be life-altering. I think it is easiest to be confident when R. is making progress, and when things slow down I start to wonder about all the other things we could be doing. One of the facilitators of the support group said that it was important to remember that our children are individuals, and what worked for her child wasn’t going to be the answer for ours. I think she’s right. I don‘t think I’ll ever be able to stop wondering what if we did this or that. But now that I can look back on a year and a half of various therapies, I do feel like I can be confident about what is working.
So when I meet another special needs parent and she tells me her child is making great progress because of feline therapy and jello wrestling (yes I am making that up, and no I do not mean any offense to any therapy or intervention out there), I’m going to think and say I’m glad that’s working out so well for your child.
We decided that we are going to skip trick or treating this year. I keep thinking that I should feel bad about it, but I don’t at all. I guess this is a good time to admit that while I did dress her in a costume last year, I used the same costume the year before that.
We tried a few houses last year and I ended up carrying her most of the time. She doesn’t like candy (I can’t believe it!) so the idea of trick or treating seems pointless. I may find a costume for picture taking, but most of the costumes in her size seem like they should be worn by teenagers. Maybe I’m just getting old.
In school they are doing all kinds of Halloween themed activities. Next week the class is going on a field trip to the pumpkin patch. We’ll be chaperoning of course. They take public transportation, which should be interesting to say the least. Lately R. hates any outdoor venue that is not a playground.
We drove by a pumpkin patch over the weekend and she screamed at the sight of it. I warned the teacher, and she was not concerned. She said She won’t be the only one having a fit. An elementary special day class is going also, they do this every year.
Tuesday we had an addendum IEP meeting to continue R’s ABA services. When she had her initial evaluation with the SDs ABA provider they were not happy with our former provider’s programming, data taking and they felt that R. could have made more progress if the program direction was better. So for her initial IEP they approved six months with a provision to review.
They approved continuation of the ABA, which I thought they would, but you never know. They also took some time to add in additional goals. The teacher asked for a behavior plan for when R is chewing on books (more of a problem lately). She said that she had been taking away the book and offering a chewy toy, but she felt that we should be modeling appropriate behavior with the book instead of taking it away. The ABA supervisor set up a behavior plan that says, when she chews on a book to stop her, get her to spit out anything in her mouth (she actually cooperates with this, she knows she should not chew on a book) and then get her to look at the book properly, once she does this give her a chewy toy. I guess this means that I’ll actually have to buy some of those chewy toys.
I asked about self-help skills, and they added IEP goals for removing her jacket, independent hand washing, and nose blowing. They also added goals for drinking from a straw and an open cup. She uses a straw cup with a soft straw all the time, but she won’t drink from a regular hard straw or even a juice box. I know she knows how to drink from an open cup but she thinks it is more fun to dump it.
We discussed potty training, it is on her IEP. I know she is not ready yet, but I was looking for advice regarding the first goal which is R. letting us know when she needs a diaper change. The teacher suggested having R. wear underwear underneath her diaper to see if she would try to take it off or let us know when she’s wet. I’m going to have to find Elmo underwear.
We also had our monthly ABA team meeting this week. We used to have the meeting at the school, but now we have it at their offices (they are part of the SD, in one of the administrative buildings). R. actually really likes going, they have fun toys and she seems to find it amusing to have us all sitting in one room.
The behaviorist said that based on her observations that R. had decent play skills. She had decided not to add any additional play skill programs. But the teacher said that R. is not showing any of these play skills at school, even though they have similar toys. So the behaviorist is adding a symbolic play program using Little People that she has at home and school in hopes that she will begin to generalize.
We discussed the other additions to the IEP and went over the programs. They had a jack in the box among the toys in the room and R. was very interested. I don’t think she has ever seen one before. She did not like the music it played and would turn the crank and then cover her ears. After awhile she figured out how to open the top without using the crank. The behaviorist asked if we wanted them to address her putting her fingers in her ears. I said that I did not. It is something new that she is doing, so it could be a phase. And I think that if she is bothered by sounds, putting her fingers in her ears is a great improvement over screaming or crying.
R. has been a little interested in playing dress-up with simple things like hats, scarves and the leis my Mother brought her. She mostly likes for me or E. to wear them, but she is starting to put them on herself. This is quite amazing to me, I imagine that it may mean that someday she will be able to dress herself.
I’ve been stocking up at the dollar store, since it is the season for costumes. I found this knight’s helmet and it reminded me of Super Grover.
On the inside there is a warning
I guess we won’t be sending her off to battle.
A friend and I were talking about acceptance, and she said it seemed like I easily accepted R’s autism. I don’t know about easy, but I do think it was easier for me than for my friend. I suspect this is mostly because I never really fantasized about being a mother, at least not as an adult. E. and I were married for nine years and had pretty much ruled out children when I got pregnant.
It seemed like I spent most of my pregnancy and even R’s first year just trying to figure parenthood out. After she turned one, it was becoming clear that she wasn’t like her peers. Now that I’ve spent more time with newborns, I realize also that she was not a typical newborn.
Of course I felt devastated when we did get the autism diagnosis. I remember feeling like we were in one of those black and white cartoons with a rain cloud permanently over heads, while the rest of the world was living in a neon colored Normal Rockwell painting. I remember how hard it was, telling people about it, hearing their condolences (boy that bugs me). I wish I had started blogging then, so I could look back and determine the point when I could say she has autism without feeling a cold knife in my heart.
Like most of us on this journey, I remember reading the essay Welcome to Holland. I knew it should make me feel better, but all I could think of was the closest I’m going to get to a European vacation is a trip to Ikea. The essay that really helped me was Don’t Mourn for Us by Jim Sinclair. I’ve read other parents who found this essay harsh, but for me it was just what I needed to read. He’s correct that grief does nothing to help my child. She’s not sad or upset about who she is, I would not want to be the one who teaches her otherwise.
I do accept my daughter’s autism. I don’t love it or hate it, I just understand that it is part of who she is. It seems like I have known something was wrong for more of her life than I thought all was right, so I have a harder time even thinking about what could have been. It is as if it has always been this way. And just because I accept autism, doesn’t mean I’m worry or emotion free.