Author Archives: mamafog

She’s four years old today

R.’s birthday is today, she is four years old.  I realize that she is still a young person, but it seems so old at the same time.   From this point on, she will have spent more than half of her life as a person with autism, and in the presence of various therapists and professionals that the average child does not encounter.

I feel differently about this birthday.  I think in a way, I dreaded all the other birthdays.   It was like each birthday was a formal reminder of all the unmet milestones.   I don’t know when it happened, but recently I started feeling differently.  I’m actually kind of excited that my baby is turning four.  Sure I wish she could tell me what she wants for her birthday or if she would like a party or particular activity.   I could fill pages with all my questions and concerns.  This year I want to celebrate that I have known and loved the wonderful person who is my daughter for four years.    Every day I learn something more about her and also myself.

We had a small party at home, I just invited another autism family.  We got her a few balloons and they had the most fun with them.   Her friends were so cute wearing the party hats.  R. wanted no part of wearing them, but she enjoyed everyone else wearing them.

She actually ate some of a cupcake.  I have never seen her touch anything with frosting before.  I wonder if she learned that at school.   Foolishly, I did not think she would have any interest in them, and I left them on the counter.  E. caught her,  and rescued them.

Elmo has a new home

R.’s birthday is on Monday, and my Mom has been wanting to get R. a dollhouse for a while now.    We put it together and gave it to her yesterday so she would be able to play with it this weekend.

She noticed it the second she came in the house.  She was all smiles and saying oh yay while she investigated the entire house.  The house came with a Mom, Dad and twin baby dolls.  She loves the Dad doll, she brought him to dinner (a space usually reserved for only Elmo and Ernie)

The dollhouse is the Fisher Price Loving Family Dollhouse.  My Mom and I spent a few months researching the dollhouses and this seemed like the best one.  I do kind of wish it wasn’t pink, but I think R. likes that it is. She likes pink.  The house was easy to put together, and it is very sturdy.  She has been trying to sit on the side rooms.  I guess they do kind of look like a seat.

The house has no electronics, which is fine with me.  All the furniture seems to light up or make sounds.  I do think it would have been nice to have a working doorbell, even an old school no battery one.

And another meeting

We had our monthly ABA team meeting yesterday.  R.’s teacher wanted to come with us, so we picked them up at school.   R. seemed to want to show me around the room, she kept bringing me over to different things.

She brought me over to the toy area, pulled out a play phone and held it up to my ear.  I think this is quite amazing because I’ve been trying to figure out how to teach her about the telephone.  Every time I call someone and get them to talk to her she looks at the phone as if it should have a screen, and usually hands it back.

The temporary classroom is smaller than their other room, there is no sink or bathroom.   The teacher said that they started taking the kids to the cafeteria for lunch and it is going really well.

The supervisor and one of the therapists were out sick, and the behaviorist had not seen the new IEP (yet to be signed, because I just got the final copy today.).  So there were a lot of things that did not get covered, but it was good to have the teacher’s input.

We talked even more about the manding progam, and moving beyond the word want and noun, to play, drink eat and more specific verbs.  It seemed to me like we were worrying the same bone as last month.  But the teacher and behaviorist were able to talk about the reasoning in detail, and I think that helped everyone.   The behaviorist wanted to make sure that enough time had been spent on one word mands, in case R. was thinking two word mands are just one long word.  She had the teacher and I list words we hear spontaneously, and thought there were enough to proceed.

The behaviorist said she observed during recess recently.  R. was playing a drum with some other girls (in the gen-ed glass)  She saw the behaviorist and approached her,  obviously recognizing her and showed her the drum.

The teacher said that she is teaching R. to tap her on the shoulder and say her name instead of tugging on her hand when they are seated together.  I saw this in action several times,  R. tapped the teacher on the shoulder and said her name!

Made it through the IEP meeting

I survived R.’s second annual IEP meeting.   I don’t have a copy of the final IEP yet, they are still working on it.  The meeting lasted two and a half hours, the time flew by until the last 30 minutes or so.

The most exciting thing to me is that R. is now going to be getting OT.   In addition to the class fine/gross motor group, she will get individual therapy – 30 minutes a week.  Our school district works on what they call a 3:1 delivery model for direct therapies like OT and ST.  This means that the students get therapy three weeks a month and the therapists work on consultations and preparation.   I was expecting to maybe get just the 30 minutes of consultation.  I still have to decipher the OT assessment, I’m sure I’ll write more on this.

Currently R. gets ST twice a week, once individual and once in group.  She is not taken out of class, and at this point I do not want her to be removed.  The ST works with her individually in the classroom.  The ST said that to work on R.’s turn taking and peer related goals she would bring another student into the individual session.  It sounded to me like she wanted to change the IEP to be twice a week of group therapy.  I told her that I did not have a problem with her doing what she described, but I did not want to change the wording in the IEP.  I said that next year I might want R. to be removed from class for ST, and this would leave things in place for that.   She gave me the strangest smile and agreed.

Last year at our first IEP I really fought for that individual session.  At this point I think it probably is better for R. to have peers involved in ST.   I don’t want that written into the IEP, because I don’t know that it will be the best way in the future.  At least I have that option to push for the individual session to be one on one if it seems necessary.

R.’s ABA was continued at the same level of hours until her next annual IEP.   Last year they gave her six months of ABA with a required addendum IEP meeting to renew.  I did not think they would reduce hours or discontinue service, but you never know.  It is a relief to not have to worry about that for a year.

This is the first IEP meeting where everyone who attended really knew R.  Even the general ed teacher knew R.   She did not stay for the entire time (I gave permission for her to leave, technically I could have refused, but there was no reason to.).  She did give some input about activities that could be done on the playground to help with turn taking and peer related goals.

Everyone was positive and had a lot to say about progress.  When she started preschool last March she was non-verbal and reliant upon PECS.  She was not compliant, was aversive to a visual schedule (despite using one at home).  While she is not talking as much at school as at home, she is definitely able to repeat words and has some spontaneous speech.  She complies with simple instructions, she will stop doing something or take her hands off.   She uses the visual schedule, can pick her name out and transition from activity to activity.

The teacher, gen ed teacher, OT and ST all said that R. really enjoys being with the other kids in her class and in the other classes.  The OT said she thinks R. prefers to do activities with her classmates than one on one with her.

I actually learned some things R. can do at school that I have not seen at home – she hangs up her backpack and jacket after removing them.  (I’ve only seen the removing.)  She can wipe a table with a cloth.  That gives me so many possibilities, starting with window washing this afternoon!

She can pick her name out of a field of ten, and the OT thinks she can write the letters in her name with assistance.   They added goals related to handwriting, letter, number and symbol recognition, and one to one correspondence.  Basically all the academic goals I thought should be added.   I asked about a counting goal and they said they thought she could count and they did not see a need for a goal regarding she could already do.

They did make the change to make the goal I wrote about into two goals.  One goal for initiating with peers and another for adults.  I also asked them to add the qualification in a familiar situation, so that if this gets mastered we can track if she can do this in a unique situation.   I also asked about a waiting goal and the teacher said that from her perspective she was happy with R.’s ability to wait.  She described how R. would line up against the wall with the other students and look at books while waiting.

She made progress on all of her goals except drinking from a straw and using utensils.   The OT really wants to work on using a fork.   I suggested that they we try using the fork as a play utensil, picking up putty or something she knows she does not have to eat.

I also saw the new temporary classroom.  The teacher said that R. transitioned to the new room without a problem.   It is smaller, they had to put the class trampoline in the hallway, much to the delight of students in all the other classes.

Fun and changes at preschool

R.’s teacher has been able to get some new items for the class using Donor’s Choose.  A light table is one new addition.  I’m surprised how much fun the kids have.  R. made the design on the table, whatever it is.

There is construction going on at R.’s school.  Her classroom is being renovated so on Monday the class will be in a different classroom for two to three months.  I was able to see the classroom while it was still inhabited by another teacher and class (who knows where they are going).  It is smaller and darker than R’s old classroom, and it has two doors.   The teacher assured me that she would have alarms on the doors, like she had with the one door they had before.   She is very good at getting what she needs, but I know the move is stressing her out.

The classrooms are old at the school.  I’m told it has been forty years since the last renovation.  I’m glad that they will eventually get brand new classrooms, but it bugs me that the teacher has to be bothered with a move twice in one school year, I know it must take her energy and attention away from teaching.

I went in and helped with packing up some of the classroom, and I’ve offered any other assistance she might need.   I’m sure it is going to be a tough time on Monday morning, getting all of the kids to go to a new classroom.  I can imagine R. pulling and yelling to go to the place she has gone every morning for almost a year.

True confessions from an autism Mom

A friend mentioned to me that one of the advantages to having a child with autism who is limited in verbal skills is that we don’t have to listen to endless pleas for princess toys or whatever the fad of the moment is.   I have to agree with her.

Sometimes I do wish that R. would tell me a toy that she wants, but it is nice that I can wheel her through the toy department and let her play with a couple of things, and often she will become bored with every one except the cheapest plastic animal.   (I do avoid the Sesame Street toys, those she could not resist).

She is getting better about waiting, and rarely screams when we are in a checkout line.  It does help that I always bring snacks.  But sometimes something will set her off and she will start yelling. It is amazing how much faster that line moves when R. is screaming at the top of her lungs.   Every once in a while,  I wish I were mean enough to make her scream on purpose.   Like when we were in line three people behind the lady who insisted that the cashier un-bag and rescan all of her bags of groceries, I could have wrestled Elmo and Ernie from R.’s hands  just to make her yell.

I’ll also confess that I’m really starting to love it when I hear other kids scream in public.  Not little babies, that doesn’t do it for me.  It is the toddlers, preschoolers even elementary school age kids.  I swear lately, I have to really control myself not to grin like an idiot.

I’ve written about how R. needs to see something before she really understands that it is possible.  I will admit that I use this to my advantage.  I’ve never shown her videos or anything entertaining to her on my laptop, so she seems to think only E’s computer has access to fun.    She never has any interest in my purse because she doesn’t think there is anything in there that she wants.  I always carry a separate bag for her snacks.

What to wear

R. is big for her age, she’ll be four at the end of the month and I’m starting to buy size six clothes, especially tops.   It is kind of hard to find clothes in this size.   I don’t know if they get purchased quickly or the stores don’t stock as much in those sizes.  Some stores like JC Penney and Macy’s have a department that is 4-6X.   I would like to know what that 6X means.   Most stores like Target or the Children’s place start at size 4 or 5 and go up as high as size 14.

It seems to me like the clothes are more suited for an older girl.  Tops with sequins, buttons and ruffles are totally inappropriate.  All those ruffles will just get covered in paint at school anyway.   I’d rather not have buttons or sequins,  who knows if she will start chewing on them or pulling them.   I would also prefer not to have shirts that are low cut or sleeveless.  We never have an occasion to wear a sleeveless shirt in San Francisco.  I could do without skinny jeans or jeggings.  They do look very cute on, especially if you are a skinny almost four year old.  But they are a pain to get on and off, those tight ankles require too much effort.

What bothers me the most are the words and sayings on girls’ shirts.  I don’t want to buy a shirt that mentions anything about princesses, love, or being spoiled.   I will confess that E. bought her a shirt that says -sorry boys I only date rock stars.  He was so pleased with himself, I was horrified.  I’m so glad she has outgrown that shirt.   I saw a shirt that said talks too much.   Part of me wants to have one made that says doesn’t talk nearly enough.

I think I’m lucky that she is not very picky about her clothes.  Her clothes, even the few dressy items are all very comfortable.  I don’t make her wear lacy dresses and she has never even had a pair of tights.   She is however picky about shoes.  All the other kids in her class are wearing crocs and Stride Rites and cute shoes.  She will only wear these boring shoes from Payless. Thankfully they seem to make them in every size.  I think she will be wearing them in high school.   I’ll admit I’d love to get her to wear cute girly shoes, but I would settle for some kind of sandal or summer slip on.

Reading some autism fiction this time

Mockingbird – Katherine Erksine

This book is actually a young adult book.  One of E.’s friends is now working at our local library.  It’s like having my own personal librarian, and he suggested this book.

This story is told from the point of view of Caitlin, a ten year old girl with Aspergers Syndrome.   She’s in the fifth grade, in a fully included class.  Her brother was recently killed in a school shooting at the town’s middle school.  She lives with her widowed father.  The tragedy plays a big part in the story.   Caitlin’s brother was an important mentor for her, teaching her many things about how to interact with the world.  The book is about how Caitlin learns to deal with the loss of her brother and learn about emotions in the process.

The author does a great job of describing how Caitlin interprets the world.  The book starts with her remembering what she calls YOUR MANNERS, and getting a sticker on her chart towards the opportunity to watch a video.   It is clear she doesn’t understand the reason for saying thank you or whatever, she has just memorized the correct responses and has a desire to please to obtain her reward.

Caitlin gets pulled out of class to have time with what I assume is a Special Ed Teacher or inclusion specialist.  This teacher suggests that Caitlin take recess with the younger kids.   She ends up befriending a first grader, and he helps her to understand that YOUR MANNERS are actually her manners.  She uses the phrase MY MANNERS.  It was really interesting reading about her coming to understand this, and developing a friendship with the younger boy.   I’m not sure how realistic the depiction of her peers coming to treat her better is, but it was heartwarming.

I’m a total wimp when it comes to fiction that is sad, so this obviously colors my opinion.  I thought that the background of the tragedy almost took away from the message of the book.   Does a young person with Aspergers Syndrome have to experience such an tremendous loss to be able to develop a better understanding of emotions?   I do get that books about school shootings have a place, I just think I would have preferred the topics be dealt with separately.

Be sure to have a box of Kleenex handy if you read this.

January ABA team meeting

We had our monthly meeting today with the ABA team.  One of my concerns is that R. is over generalizing the mand, want book.  She is saying want book for nearly everything she wants.   The supervisor thought that this was typical for R, and she’s right. R. does have a tendency to over generalize specific mands when they are first learned.  She also said that they are working on an object identification program that will help R. increase her vocabulary, and this should help.

R. will come to me and say want book, while she hand leads me to what she wants, which is rarely a book.  If she wants a cookie, I’ll say want cookie and she will only repeat the word cookie.  I know it is common for children with autism to repeat just the last word.  I do find I can get R. to repeat two word requests when they don’t contain the word want.

We discussed this for quite a while.   They suggested that when she says want book, we should give her a book, even if we know that is not what she wants.  Then when she refuses the book we should prompt her to say the correct mand.  We decided that we should limit our use of want, okay I pushed for this, but it wasn’t hard to get them to agree.    So instead of want cookie, I’ll say eat cookie, instead of want water I’ll say drink water, instead of want open, I’ll say open door.    They modified their mand program so they will work on eat cookie, play ball and want doll.

R. has started saying Hi spontaneously, mostly to inanimate objects.    She was cold so I put a sweater on her, she looked at it and said Hi, with the most joyous, glad to see you tone.  She said Hi to the water in her shower, to the box of cookies, to the new straw I put in her cup, always with that pleased as can be tone in her voice.   The behaviorist and supervisor thought this was a little weird, but cute.  The therapists said they thought it was typical behavior for  an early talker.

They are increasing R.’s sitting on the toilet to twenty seconds, up from ten seconds this week and last.  Her pants are still on while she is sitting.  We discussed the fact that she needs to sit for the entire twenty seconds with out any prompting.  They are giving her a reinforcer after sitting, and they wondered if they should give her the reinforcer while sitting.  I said that I would like to keep reinforcing her after sitting, until we get to her sitting with her pants down.   Then when we switch to pulling her pants down, she’ll also have the addition of a reinforcer while she is sitting.  They agreed.

R. has been doing jigsaw puzzles with the image on the background, so it is really matching.  They are going to start doing the same puzzles without the background.  I’ve been doing a jigsaw puzzle with her lately with no background, and she is starting to get it.   I think she has memorized the picture, but that is okay, at least she finds it interesting.   She’s bored with her insert puzzles, so I’m looking for other activities like that.  It’s like it needs to be a little challenging, but not too easy or difficult.

They are working on a new tracing program.  R. is supposed to trace a dotted horizontal line.  She needs a little bit of a prompt but she seems to like doing this.   I know she likes to have me hold her hand and we do dot to dots or write the alphabet.  The behaviorist wants me to stop doing that until she gets further along in this program.   It bugs me a little, but I do get where she is coming from.  We’ll do more coloring.

I finally asked about being provided a list, even a short one of activities that we could do with R. on days off and sick days.  She seems to be bored and looking for more to do on those days.   They said they could give me a list of the programs that were on maintenance, and seemed to think it was a good suggestion.

One of our therapists is leaving, Friday is his last day.   It happens all the time, but it always makes me a little sad, and he says he is too.  R. really loves him, I hear them both laughing throughout their sessions.

Writing the Family Rule Book – Rule #1

I keep getting annoyed at E. because he won’t follow what I consider to be a simple rule for disciplining and communicating with R.  He told me to write a rule book, so here goes.

When giving R. an instruction, (An instruction is any time you are telling R. to do something, whether it is regarding misbehavior or not.  Sit down, come here, put down, are examples) only repeat the request twice.  After the first request, if she is not complying, move towards her, and repeat the request a second time when you are a hands reach away, if she does not comply after the second request, physically force her to comply.

So it looks like this:

R. is jumping on the couch.
I say Sit down, wait a second or two and move towards her.
She continues jumping.
I’m standing in front of her and I repeat Sit down and physically sit her down.

I’ve been using this method since R. was 18 months old, before we knew about the autism.  A Mom in my typical Moms group suggested it because she was tired of yelling all day.  In the beginning I was careful to use commands that told R. what she should do – sit down as opposed to what not to do – stop jumping.  It doesn’t matter as much any more, she seems to understand.  But what is the best part, is when I use this method I almost never have to say the request twice.  As soon as she sees me moving towards her, she will usually comply.  She does test me a lot, she’ll wait until my back is turned and start jumping again.  But that kind of testing seems like a good thing to see in a child with autism, so I try to be patient.

This can be an annoying method, because it means I have to stop what I’m doing to follow through.  I have to be consistent, especially regarding discipline.  But it is really worth it, she listens to me and to her teachers.  She also listens to E., but she would listen even better if he would be consistent about forcing her to comply.

I don’t mean to imply that E. is not cooperative in general about working with R.  I think that it has become one of my pet peeves to hear someone repeat things endlessly to her.