ARD meeting

I attended Megan's ARD meeting yesterday.  Her annual meeting will be in February every year but because of the disagreements at the last meeting and the need for additional data gathering we had one yesterday.

We reviewed Megan's final progress report for this year and it was noted that with the exception of 1 speech goal she has now mastered all of her goals.  She made tremendous progress in the past 11-12 weeks once she started really sleeping again and I stopped waking her up for school.  I let her sleep until she wakes up on her own and then take her to school and it has made a big difference in her demeanor.

Before we got into everything regarding her placement for next year (the reason for the meeting) I showed everyone her talker and how it worked.  I explained how she has been doing with it and we discussed getting it written into her IEP that she will have access to it at all times; but that she will be allowed to communicate however she chooses (verbalizing, sign language, pictures, talker).  Her teacher and therapists were all very interested in seeing it and want me to go ahead and let Megan take it with her to school next week even though there are only 4 days left.  After the meeting was over her teacher and 2 of her therapists played with it for 20 minutes or so.

It was determined that the classroom for next year will be the STACC room.  See below for the description of this room.  This is what she needs, a room that is centered around communication and correcting behaviors.  We are not positive we will send her but it is now an option (as opposed to the other class they wanted to put her in).

Structured Teaching Alternative Communication Class – STACC (Prerequisite Skills and Communication)

STACC classes are designed to provide a highly structured instructional program for students with Autism Spectrum disorders, or other disabilities, whose academic, communication and behavioral needs cannot be met in other settings.

The focus of this setting is to provide classes with the following features:

a. A high degree of classroom structure - physical, academic and behavioral.

b. Emphasis on the development of effective communication skills through direct

Instruction.

c. Management of behavior through an individualized Behavior Intervention Plan.

d. Social skills development.

e. Visual supports

Great day at school and home

Megan did really great at school today.  She finally showed them a little of what she can do.  She signed 'more' without any prompting whatsoever.  Her teacher said this is the first time she has signed anything without them prompting her in some way.  She also verbalized more for them today too.  Go Megan!

She did really well this afternoon despite not having a nap.  She even used her talker to ask for a drink without pointing and grunting at it first.  She has been pointing/grunting and then when I say "tell mommy drink" she will push drink.  Today she just reached over and pushed drink.

Talking, playing and stacking

Megan is continuing to babble so much more.  She is approximating more words on a regular basis and even saying some so well Sam understands what she said.  Yesterday she said "open it" after I had said it and this morning for the first time I got a very clear "no no". There was a solid "o" sound instead of it being more like "nah".

She is doing well with her talker when she wants to.  She uses it intentionally to tell us something and other times is still just playing with it.  I added her songs, body parts and some specific animals so that we can work on activities that she enjoys.

Megan is a little obsessed with stacking things lately - her blocks and our over sized shapes.  She gets excited that she has stacked them well and then she gets a little mischievous grin on her face right before she knocks them down.  She has always loved knocking things down and I think she is loving the fact that she doesn't have to wait for someone else to stack them up for her anymore.

More talking and using the talker

Megan has been babbling like crazy since we implemented her talker.  She is just chatting and all of the sudden she will say a word.  Words she has approximated in the past 3 days "morning, eat, hooray, yeah" and she has said "no, dada, yay".

She loves her talker so very much and will look for it if we haven't gotten it out for her yet.  She is using it purposefully to ask for a drink, to tell us she is hungry, ask us to sing songs, read her a book, play with the ball or blocks and to talk about daddy.

She is so excited to see it that she wants to hit it and shove it.  We are working hard to make sure this behavior doesn't become a habit and we tell her "gentle touch".  She understands and will control herself she just loves being able to ask me to sing songs to her and I understand what she wants.  

She said 'eat'

This morning Will was feeding Megan breakfast and modeling using the talker by pushing 'eat' and 'drink', etc.  At one point he pushed 'eat' and Megan said "eat".  Will said she just said eat, I think she just said eat.  I heard her too - she did say eat.  She is babbling a ton too - just chattering away since we started using the talker.

After breakfast she was checking it out and I used it to say it was time for school and she was very upset.  She loves school so I know this was about leaving the talker.  I will be calling her teacher today to see what we can do about getting it at school with her.

Eat, Eat, Eat, Eat and new dancing

About 20 minutes before dinner time Megan started pushing 'eat' on her talker.  She was kindof half-heartedly pushing words up until that point but she still didn't want to leave it to go play with toys.  She wants to be right at it at all times.  Anyway, so she kept saying 'eat'.  Granny was here visiting by that point and so I jumped up to cook dinner and I kept telling her I was working on it.  A few seconds later I would hear 'eat' again and then hear my mom telling her I was working on it.  

The girl meant business.  She said "hey, you gave me this thing and I get what I want when I push the right word and I WANT TO EAT!".  It was awesome!!!!

After dinner we continued working with her and she continued to not want to leave it.  She wanted to play with her dominoes so badly but she just couldn't bring herself to leave the talker.  We were finally able to entice her to play a few times for a couple of minutes.  While we were playing with her I showed her again where "sing" is located as it is a two push word.  As soon as I pushed the word I would begin singing a song and Megan was so completely beside herself happy that she could get me to sing by pushing the word that she was doing this side to side swaying back and forth with her arms outstretched and she would slap her hands on the floor on each side.  When I finished singing I helped her find the word again and she would start the new ecstatic dancing again with the biggest smile her on face.  She is LOVING being able to tell us "no I don't want to do that" or "I want to do this" or "sing to me mommy" etc and I LOVE that I get to hear what she wants too.  

Megan is "talking"

This morning when we got home from school Megan and Sam played in the toy room while I made lunch.  I then grabbed Megan's talker and went to get her out of the toy room.  I had opened the word 'eat' and pushed it while telling her it was time to eat.  I put the talker beside us during lunch and repeatedly pushed the 'eat' and 'drink' buttons while she was doing those activities.  I was modeling the behavior we want from her.

After lunch I took her into the toy room and she sat beside me with the talker.  She didn't want to go play with anything she just wanted to just it out.  I opened some animals so we could find them and hear what they were.  I had a toy in my hand and she would push go for me to activate it and then giggle when I would stop.  She pushed 'go' once without me saying "ready, set" first which is great.  She was checking out what words were on the screen and kept pushing 'play' and 'on'.  I added the word 'nap' and I said Megan are you ready for 'nap' and she pushed 'play'.  That is HUGE for her to be able to say (with one word at this point) no mommy I am not ready for nap I want to play more.  I did this with her 5 times over the period of about 10 minutes and sometimes she even responded with 'more play'; but every single time she answered me when I asked if she was ready for nap by telling me she wanted to keep playing.

I opened up a few more words for her so she could ask me to sing, which she loved doing and then I opened the words 'love' and 'dad'.  I then modeled saying 'love dad' for her a few times and she was so excited about it and then she signed 'love' and stroked my face.  I hadn't given her the option of 'mom' simply because I hadn't changed the picture to be me for that word yet, but she wanted to be able to say 'love mom' too.  My sweet, sweet little miss.

She was not happy to go to bed and leave her talker behind.  It was hard for me to put her in bed when she was so interested in it.  I love that she is excited about it.  We still have a long way to go but she is doing amazing.

Putting her 'talker' to use

All of Megan's components arrived today so I assembled them and downloaded her speech app.  Her 'talker' is up and running.  I changed out the pictures on the words that had ones she wouldn't recognize and it was time for speech.

The case does a great job of amplifying the sound, though it does distort it a little bit.  I will take a little distortion though to have it be loud enough for us to hear her anywhere in the house.  She did well with it during speech, though since it was the first time she had seen it she was exploring the case a little bit too.

At one point she did something amazing.  Meredyth unbuckled her from the swing and Megan climbed down into the floor.  Meredyth turned around to get something new for Megan to play with and during this time Megan walked over to the musical toy she had been playing with prior to the swing.  I put the talker on the floor beside her and looked up to check on Sam.  I looked back down and watched Megan reach over and push the 'on' button.  She did this all on her own without any instruction or encouragement from anyone.

There were other times when she wanted something and Meredyth was encouraging and asking Megan to use the talker and Megan was just refusing.  This is how it is going right now: one moment she is using it without any prompting and a little bit later she won't use it regardless of how much she wants what she wants.

Another new school SLP and outside SLP update

On Friday I received a phone call from Megan's school speech therapist (SLP).  She wanted to discuss Megan's goals for next year; her ARD meeting is coming up on the 29th so all of her therapists are working on her goals.  Megan has only been seeing this lady since just before Easter so she hasn't had a lot of sessions with her yet.  She started going down the list of Megan's current goals and talking about how they should be adapted/modified for next year.  She asked me if Megan was saying any words at home.  I told her the words Megan has been saying at home and she just kept saying that she has only heard "mm" from Megan at school; and I said well you asked me what she was doing and I am telling you that she is capable of saying the words I just told you.

Then she said the goal regarding Megan imitating "m,b,p,n" she said that she wasn't sure what Megan would be capable of but that she wasn't meeting this goal right now and she prefers her students master goals so we needed to change this one.  And then she said "I am not ready to give up on her yet".  I was shocked and couldn't believe that she had just said that.  By the time our conversation was over she had said it 3 times and when I called her out on it her response was "I said not ready yet" like that was supposed to make me feel better.  Needless to say I was livid.  I waited until yesterday to call the school about it because I was in no condition to address it that day.  There was no push back, Megan was assigned a new SLP today.  Starting tomorrow she will see her 4th therapist (her first changed jobs, second was a temporary, third was the aforementioned person who shouldn't be a therapist if she gives up on people).

Now to the good stuff.  Yesterday Megan saw her outside therapist, who is wonderful.  Unfortunately some of the session was spent looking at/dealing with the new software but Megan still got a good 20 minutes at least of therapy and she did great.  Meredyth (therapist) turned on a toy for Megan and then stopped it after 15 seconds or so and showed Megan the iPad.  Megan immediately looked for the word "more" and since this was a different software the button was in a different location and had a different picture with it; BUT she looked around, found the word and touched it all within a few seconds.  Megan knows what the WORD "more" looks like.  I was shocked, stunned, thrilled and so proud of her.  She didn't skip a beat she touched it and looked at Meredyth for her to turn the toy back on.  So to recap, she didn't have to be prompted (other than putting the iPad within reach), she had to figure out where the word was on the screen and what it looked like and she did it all in 3-4 seconds.  The rest of the session went really well, she would touch "more" or "go" when necessary; sometimes requiring prompting by Meredyth telling her to touch it and sometimes not.   At one point Megan pointed to the light switch and made her "do something" noises and Meredyth asked her if she wanted mama to turn off the light.  I ended up standing by the switch and turning the light off and on whenever Meredyth pushed the appropriate button.  This exercise evoked Megan's stubborn side.  She really wanted the light turned off and on but she was frustrated that her pointing at it and making her noises wasn't enough to get it done.  She didn't WANT to touch the picture on the iPad, she wanted me to understand (as I usually do) and accommodate the pointing/gesturing/noises by doing what she wants.  Meredyth was having to either model appropriate behavior by pushing the buttons and me giving her what she asked for or physically using Megan's finger to push it.  I know that we will have to get through more of this as we implement this communication device for Megan so it was nice to see how Meredyth dealt with it.

Watching Megan walk never gets old

The other day Will and I were talking about Megan's therapies or an emerging skill or something (I can't remember exactly what) and I told him that to this day, EVERY SINGLE TIME I watch Megan walk, or dance, or jump, or do anything on her feet I am so very proud of her.

She has been walking for months but it took her years of hard work and determination to get there.  It makes me smile to see her enjoying time on her feet.

Back to sleeping means back to progressing

Two days ago Megan had an allergy appointment.  We have to stay for 20 minutes after each session and so I took the iPad with us for a distraction.  Megan sat in my lap and played with the "Monster at the end of the Book" app a few times and then switched to the puzzle app.  She has been better recently about putting pieces where they go - this is not actually a puzzle in the typical sense it is various shapes/animals/etc and then corresponding blank spaces around the scene where they fit.   I  have talked previously about how she started doing better with this app and was actually getting a couple of pieces in their correct spot.  Well, two days ago she took it a step further and would put her finger on the puzzle piece and drag it around the screen pausing over each empty space to see if it matched and when it didn't she would keep looking until she found the right space.  Sometimes she would let the piece go and try again.  When you try twice, unsuccessfully, the app will put a circle around the correct location.  When she was having difficulty with a piece she would see the circle and immediately put the piece in the right location.  This is new, this was the first time she seemed to understand what the circle meant.  She solved entire puzzles by herself.  When she was playing the puzzle app I thought "this is how Sam plays this game".

Later that same day she was playing with a real puzzle at home.  It is a more difficult puzzle because there are lots of little corners/edges that have to line up just right.  She did amazing with it, twisting/turning/adjusting pieces until they fit.

It is so awesome to watch her figuring things out.  To watch her progressing in areas and be able to witness the change.  It is understandable but still amazing how her progress is always tied to her sleep.  When she was not sleeping again her progress halted, thankfully she didn't go long enough to start regressing like she had before.  I am so very thankful that we were able to identify the cause of her sleeping issues and that we continue to be able to help her.

As part of her mommy's day gift to me this morning she slept until 8:00 am.

More sleep (she's back) and moving forward

Megan napped yesterday, slept for almost 10.5 hours last night and is currently napping today.   It is so wonderful to have her sleeping again.  

Her speech therapist called me this morning to review her goals for next year (that is for another post, ugh!) and at the end of the discussion she said that she feels bad that she was the cause of Megan's sleeping issues.  I assured her again that we don't blame her, she didn't do anything on purpose, etc, etc.  She said that in addition to washing her hands before she works with Megan she will clean all of her therapy tools before Monday.  This was going to be my next request so it was nice to have her offer on her own.  

We have decided to move forward with getting Megan an AAC (Augmented and Assisted Communication) system.  We were headed in that direction by using the Boardmaker pictures but have decided to move to using an application on the iPad.  I have talked about her using it during her private speech sessions.  We have been waiting to demo the actual application we want to use prior to buying it; but decided to go ahead and order her the case and iPad she will need.  She has an iPad that she uses for games, which have greatly helped with her fine motor skills, as well as, learning shapes, colors, matching, big/little, etc.  We cannot use the same iPad for her "talker" because we would have to remove her ability to talk in order for her to play a game.  We are not going to give her a voice only to take it away from her if she requests to play a game.  

We are still patiently waiting (so hard for me I so just want to get her anything she needs, immediately) for her therapist to download a copy of the application so I can make sure it is the one I want for her.  

9 hours of sleep

Megan slept for 9 hours straight last night.  Clearly the speech therapist is the cause of her sleeping issues.  I instructed the teacher to not allow her to have a session today to give Megan a break and a chance to catch up on feeling better.

A nap and a great speech session

So I spoke to both Megan's teacher and her new school SLP this morning.  Her teacher said it would be fine to skip Megan's speech session today until we have a chance to discuss what is going on with her new SLP; so that is what we did.  Megan did not get speech at school today - her one on one session for the week.

When I spoke to the SLP she said she didn't wear any perfume and didn't have fragrant soap, lotion etc and that she was in Megan's classroom every day so why would the two days she spent time with Megan make a difference.  I explained that she touches Megan's hands and Megan puts them in her mouth, etc.  She just couldn't believe that she was the cause of the sleeping issues.

Well....since this started, despite being exhausted, Megan hasn't been napping either.  She would get one occasionally during the week and nap on the weekend.  So she wasn't getting enough at night and still wouldn't nap during the day because of whatever she was exposed to.  She received her group therapy session on Monday, which caused a crazy bad night on Monday and then a better, but still bad night last night.  Now that she is two days from exposure she was able to nap today.

I am assuming tonight will be progressively better than last night.  The problem at this point is that since the lady can't figure out what she is doing that is causing the problem how do we make it better.  Megan needs as much speech as she can get so I am not sure what we will do going forward.

This afternoon Megan had her external speech session and she did amazing with the speech app on the iPad.  It is still not the app I want her using, we are hoping to switch over on Monday, but it is what is available at the moment.  She is purposefully pushing "more" and "go" and "on".  It is so awesome to watch.  I can't wait to see what she can do when she has access to the software fulltime and not just twice a week for 20ish minutes.  I am waiting to demo the software before we buy it because it is expensive and if it doesn't do what we want we can't return it.

Possible cause of her sleeping issues

Once again Megan was up last night and she was not happy about it.  We are struggling with what is causing it since some nights she will sleep and then she stops.  We have addressed EVERY possible trigger at home that we can think of and nothing seems to make a difference.

Today my mom asked me if Megan slept last night and in my answer to her I said "it must be something at school...." and it clicked.  I had an aha moment.  Megan got a new speech therapist about 3 weeks ago, I think.  If she is the cause then it makes sense why Megan will sleep and then stop for a couple of days and then sleep again.  It is because she is exposed to something, it effects her and then when she doesn't see the lady for a couple of days it wears off and she is fine again until she sees her again the next day.

I will be calling the lady in the morning to discuss what is going on.  Maybe she wears a lot of perfume, or scented lotion, or has strong smelling detergent or is giving Megan something.

mama, mama, mama

Megan slept through the night last night for the first time in several days.  She was so very happy this morning.  She giggled all the way to school and Sam kept saying "sissy laughing", "you make sissy laugh?".

When I picked her up from school her teacher walked her out to me so she could thank me for her pie in a jar teacher's gift.  When Megan saw me she grabbed me and wouldn't stop hugging and kissing me - for a good 2 minutes she was squeezing me and kissing me and squishing her face against mine and smiling.  Her teacher said that about a minute before she walked her out she had started saying "mama, mama, mama" and it seemed very intentional, not just babbling.  Clearly she was missing me.

She did great at speech this afternoon.  Her therapist and I talked some during the session so it wasn't a full session for her but she did well.  Sam enjoyed getting to play with her and the toys for a couple of minutes while we talked.

"More", hiding and teasing and handing me her glasses

A few days ago Megan was struggling with throwing her sandwich a lot.  After several warnings and interventions I put the second half of her sandwich in a ziplock bag for later.  When she saw it in the bag she reached for the bag and verbally said "more, more, more" very clearly.  I assure you she was given more of her sandwich.

If I am the one who gets Megan up in the morning I sometimes get her out of her jammies, change her diaper and then I get her clothes out of the closet.  The other day I had her closet door open and she stood up and walked into the closet and then side stepped so that she was hidden behind the wall.  Then she slowly tilted her head and peaked out, saw me, giggled and jumped back behind the wall.  She was hiding from me and it was so cute.

Will was playing with her current favorite toy, her box of floor dominoes, and he was making the box jump around.  She found this hilarious and was giggling like crazy.  She would take the box from him and jump it around and then eventually she started taking the box and then turning her back to Will so that she was in between him and the box; and then she would grin and giggle while she played with it.

When we are in the car sometimes Megan leaves her glasses on and sometimes she takes them off and throws them in the floor, or worse she "manipulates" them, turning and twisting them which could potentially break them.  So this week when I noticed that her glasses were off in the car I would put my hand back and tell her to give them to me; which she would do immediately.  Two days in a row this happened and then the third day she left her glasses on.  On the fourth day I heard her making a grunting/get my attention noise and when I looked in the mirror she had her glasses folded in her hand and she was trying to give them to me.  The noise she was making was a "uhn, uhn" type noise like "here, here".   She did it again the next day.  While I would prefer that she leaves her glasses on this is a great step for her.