Giving up on greener grass

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.


Passing on Halloween

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.

Halloween 09

I have to wear this again!

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.


Week of meetings

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.


Not for safety use

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.

All she needs now is a cape

On the inside there is a warning

WARNING: This helmet is a toy and not be used as a safety protective device

I guess we won’t be sending her off to battle.


On acceptance

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.


Keep to the schedule

Our supervisor emailed me to change R.’s therapy time for yesterday and I agreed.  The therapist showed up at the regular time, so I mentioned the supervisor’s email and she said she had just received a call from another parent asking their schedule.  So she stood in the hall making phone calls to determine where she was supposed to be.

I was in R’s bedroom, where they have her sessions, and she pushed me out of the room.  She grabbed the therapist’s bags and carried them into her room, hand led the therapist into her room and shut the door.

The therapist told me that she then independently checked her schedule and sat down at the table, ready for work.


I’m back

I did not mean to let so much time go by without updating.  My parents visited from the East Coast and it has been a busy month.

R. is talking more, she is repeating, saying things spontaneously and it is much easier to prompt her to speak for things that she wants.  Here’s an example:

R. grabs my hand and pulls me to go where she wants.  I take a step or two towards her and lean down, look her in the eye and say  Come Mommy.  Come.

R. says Come.  She usually keeps hold of my hand, but she is starting to let go and trust that I am following.   When we have arrived at her chosen destination, if she wants something open or she wants me to sit down she will say open or sit most of the time without prompting.  I’m so excited every time that I still rush to comply with her request.     If she is asking for something else, I have to figure it out and prompt a word.  She’s been asking for the curtains to be open or closed, the lights on or off.

With this new ability to repeat words, she seems to also be developing echolalia.  If someone says, say bye, she will say say bye.  I don’t see this as a problem yet, she is echoing immediately, and it seems like this is necessary for her to understand and practice.  Sometimes when she repeats words she has this look on her face like she is trying it on for size.

She did really well with my parents’ visit.  They stayed with us and she kept them busy nearly every minute.  It was interesting to see how she was able to communicate with them and get them to do what she wanted.  They have not seen her in two years, so it was really like they were strangers.

We took them to R.’s school to see circle time.  It was strange, when I walked up to R. after class I reached my arms out to her and she gave me a funny look and ran off.  I had to approach her again and talk to her a bit. I don’t think she recognized me at first because she did not expect me to be there.

R. is back to jumping all the time.  She used to jump all the time when she was younger, but for over six months she has not been interested.  After my parents arrived she was a jumping machine, jumping on all the beds and her trampoline.  She is still at it, I’m not sure what has changed.

She’s also been sticking her fingers in her ears.  She has never done this before.  I wonder if she just figured out she could do it.  Sometimes it makes sense, like if she doesn’t like a song or something is loud.  She’ll be playing her keyboard and then she’ll stop, put her fingers in her ears and grimace,  she’ll repeat this a few times and then finally she will play with a smile.   She’s also been doing it on the bus and in the car.


The sweet sound of her voice

For the longest time it was so shocking to hear R. say anything beyond babbling.  It reminded me of when she first starting moving around how strange it was to find her in a new place.   But it also made me think that by not expecting her to speak, I was missing out on opportunities to encourage her.

It can be so emotionally draining to coax words and communication from my child.   When I get no response it feels like a double failure.  I tend to over-think things, which is probably obvious from this blog.  A plan of action really helps me, and being consistent seems to help R.

After pestering our ST and ABA therapists with questions, I decided that I would focus on really encouraging communication regarding things R. is asking for, or manding in ABA speak.    I will say a word for what she wants, repeating it in what I hope are interesting ways.  Then, as per Hanen’s instructions, I’ll wait, leaning forward with an expectant look on my face and my mouth open.  If she doesn’t respond, I’ll repeat and then offer another way to communicate her request, usually with a PECS icon or a gesture.

I’ve noticed that while she can and will say more now,  she seems a little frustrated when I prompt her for something and she thinks I know what she wants.   We’re down to  only one inside door that she can’t open, it has a child-proof (at least so far) knob attachment.   She will hand lead me to the door and put my hand on the knob.  I’ll say open several times and she gives great eye contact with an expression that seems to say yes, I want it open you idiot.   One time without thinking I said, You can say open and she said it.   I tried it with different words and it worked, not all the time but more often than without the you can say phrase.

I know that Hanen and many ST’s say that you should not say the word say to your child when trying to get them to speak, and I do agree with that.  It seems like this is slightly different.  It’s more like I’m giving her a suggestion.   Using the example of the word open, I know she can say the word in context and I know she understands the word.    Here’s my usual “script”

R puts my hand on the door knob.
Me: Ohh-pen, you want ohh-pen  (I lean over with my mouth open and an expectant look, I also remove my hand from the door knob)
R gives me the look, pushes my hand towards the knob again
Me:   Ohh-pen, ohh-pen.  You can say ohh-pen. (I repeat what I described above and wait)
R.  Ohh-pen
I’ll open the door and then say  Good talking!  You said open, I opened the door.

I’ve been careful to discuss my methods with the professionals we work with, and they all seem to say if it works go with it.   It has taken me some time, but I finally got our ABA provider to change the way they do the manding program with R.  Their method was to try to get R. to mand (ask for) the same item ten times in a row.  They would break up a cookie into ten pieces.  Usually she would do it several times and then be done with it.  I told them repeatedly that they were setting up an unnatural environment, I mean who asks for the same thing ten times in a row?   I suggested that they could contrive situations, but that they should be spaced throughout the session and take advantage of what she was interested in that day.   I gave them a clear plastic box and suggested they put different things in it to get her to mand for open.   I also told the therapists individually about exactly how I was prompting her including the waiting and expectant looks.

I know they tried and were more successful, and at our meeting last month the behaviorist said they were changing the program to record data of any manding that could be encouraged throughout the session.   It is partly that we have two really awesome therapists, but they have been getting really good results.  Especially this past week, they come running out after the session is over looking for me to tell me everything she said.  The amazing thing is that they are just as excited as I am.   Today the therapist said that R. used a verbal mand to get out of doing her work.  While on a break the therapist sang a song with R. sitting on her lap.  When she told her it was time to check the schedule, R said Sing!.


No more zombie hands

ABAs imitation programs have been really challenging for R.  At first she really did not have much of an ability to imitate at all.  In the last 6 months or so I’ve noticed that she will imitate something that is of interest to her.  If I’m doing something with one of her toys she will copy me.  The behaviorist told me that this meant she had the ability to imitate, but that it was not yet under instructional control.

When we started with the school’s ABA program, they started with the same gross motor imitation (GMI) program that the EI ABA provider used.  They said do this and clapped their hands.  When she did not clap they would take her hands and clap them for her.   R. seemed to understand that she was expected to do something and she would just hold out her hands.  She did this with the EI ABA also.  This is a result of over prompting.  The authors of The Verbal Behavior Approach call this zombie hands, and that seems so appropriate.   Our EI ABA provider did not adjust the prompt level often enough.  Of course I did not realize this until I did a bit of research and by then it was time for the preschool transition.   Our current behaviorist clearly knew what she was seeing, and instructed the therapists to delay the prompt and gradually they were able to remove it.  The behaviorist and supervisor adjusted the prompt level several times a week, they really stayed on top of it.   R. is going to master not just one but several GMI programs soon.


We saw the sun

We actually had some hot weather here this week.  It has been at least five weeks since we have seen the sun, and even then it was just a glimpse.    Monday I sent R. off to school in a long sleeve shirt and a hoodie (and pants of course), it was 53 degrees, windy, foggy and wet.  When she came home four hours later it was sunny, close to 80 degrees.  Her teacher emailed all us parents suggesting we put sun block on our children.   Only in San Francisco do parents need to be reminded about sun block.  This week was the first time I’ve needed to apply any since last summer.  The fog came back last night, but at least we are prepared for any future sun appearances.

R. has one pair of shorts, she hasn’t worn any since the last time she wore sun block.  When I put them on her she looked at me like I forgot something.  She kept trying to pull the legs of the shorts down so they would cover all of her legs.   She did get used to them after a while.

I’ll admit that I am fascinated by weather, and like BigDaddy Autism’s son I even like to watch the weather channel.    I wonder if these things run in families.  My Mother has the weather channel on all the time, and my Sister will call with local weather reports (she gets exciting weather).   I’m probably one of few people who don’t consider chatting about the weather to be small talk, and I find how people react to weather to be fascinating.