Tuesday, September 29, 2015

Look What Came Home From School Today

A new permission form. While not perfect, it is better than the first one. Now, here is to hoping that this went to Evan's class and that more kids return it. This came home without any verbal communication from the school but I did get a late day email from the SpEd Director asking to meet with me on Thursday.

Progress, people, progress...inch by hard earned inch.

Monday, September 28, 2015

School Lunch Update

I'm so angry right now. I just got off the phone with the SpEd Coordinator regarding my lunch concerns. I wanted to talk to her because, based on her emails, I was concerned that they were not seeing the bigger picture of Evan "choosing" to eat in the cafeteria, and I was right.

To back up just a bit, the information that I had was that Evan was eating in the cafeteria so that he wouldn't have to eat with a girl. The school is telling me that Evan is choosing to eat in the cafeteria, even before drawing sticks, so that he can eat with his friends. O.k., I said, I believe you, but can you understand the difference in choosing the cafeteria to eat with his friends, vs. choosing the cafeteria to escape eating with girls? Oh, that made her mad, and I wish I could convey the tone in her voice as I write this. There were people in the background of her call, so I'm sure they got an earful after we hung up.

The school coordinator said that she felt like we were losing focus of the fact that he was originally removed from the cafe for sensory reasons and the fact that he wasn't eating. Now, she said, she felt the focus was becoming social. This is the point at which I nearly self-combusted. Of course there is a social implication to lunch time - he has AUTISM!!!! No, she said, this isn't about autism because "my son wouldn't want to eat with girls either".

And I agree with that statement. Many 6 yr old boys don't like girls. My 9 and 11 year old girls don't like boys. But, when they are sitting next to them at snack, they eat. And if they have to sit with them at lunch, they eat. And, if you put them in a room with a boy from their class, they wouldn't escape to another area. And, last year Evan ate with girls all the time, but he had known most of them for 1 1/2 years, some of them longer. He had established relationships with those girls, and none of that was considered when they instituted the lunch program for him this year (I'll be honest, I didn't consider it at first either). But, then not one person thought to look at the pattern of behavior that happened when he repeatedly kept picking a girls name for lunch time. Because their only focus is how much food he is eating, and since his food intake was only affected some days, nothing else was considered.

Oh, and there will be no additional notices sent home to better describe a lunch buddy program and no, no children from other classes will be allowed to eat with him.

As an aside, I hate it when people, especially those in Special Education, compare Evan's behavior to those of their neurotypical children; it shows a lack of sensitivity and poor understanding of our situation. Jayme and I embrace "normal" things that Evan does, but I'm sorry - this is a child with poor social skills, with a history of not eating and disruptive behavior at home due to things that happen at schools and I'm certain that on day 13 of First Grade he did not miraculously decide that the cafeteria was way cooler because his friends are there.

So, when the coordinator pulled the "my son" card, I stopped talking. I pushed down all the words I had to say and tried not to cry (I cry easily, by the way, especially when it comes to Evan and I was SO frustrated that she was not listening to me). Then she stopped talking (I'm sure she was just as frustrated at me). I said that I appreciated the fact that she will let Evan pick between another boy who frequently eats in a quiet space and the 2 boys that returned their permission slips, and that we can talk about the rest later. I even said thank you, even though I wanted to scream at her.

I'm not done, though. I'm feeling more calm after writing this out, and I've talked to Jayme about where we go next. The point is not to end with Evan having 3 kids to eat lunch with.


I stopped writing this post at the previous line and took a long break. During that time I drafted and sent an email to the SpEd Director; while I won't share the letter in it's entirety, he is an excerpt:

"...but she (the SpEd coordinator) did say that she worried we were losing focus...that we originally removed Evan from the cafe because he wasn't eating his lunch, and now it seems to be more socially based. Of course, I said to xxx, there is a social component to this because Evan has autism, to which she replied that she believed that this had nothing to do with autism because her son wouldn't want to eat with girls either. I'll admit, at this point in our conversation I became quite agitated, because with a child with autism, there is not a single part of their day that does not have a behavioral or social ramification. There is clearly a disconnect between what I consider normal for him vs. what xxx thinks is normal, because unlike other children, if not corrected, Evan's behaviors have the potential to become permanent. What starts as not tolerating sitting with girls while eating lunch becomes not sitting with girls across many settings with the potential for significant behavioral breakdowns. This exact scenario played out this summer, in fact, which is what prompted me to ultimately move Evan from his originally assigned summer class; he was eating with peers he couldn't tolerate (a girl, actually), then he stopped eating, then he became aggressively destructive each morning before leaving for school. So, when I say that you cannot separate out the social and behavioral components in this situation and I am told by the coordinator of the SpEd program that this has nothing to do with autism, that is a huge red flag that demonstrates a clear lack of understanding of the complexities of what we are dealing with in regards to Evan.

 To be clear, we are dealing with two separate issues.  First, we do need the remedy that xxx agreed to which is that the girls names on the popsicle sticks will be removed leaving Evan with tolerable choices for lunch.  Second, we need to acknowledge that though on its face Evan's "boys vs. girls" mentality may seem age appropriate - it will also have unintended consequences.  We know this to be different from other peers in that the normal population will tolerate being in the presence of the opposite gender whereas in Evan's case it becomes so disruptive it can interfere with his ability to eat and/or tolerate his entire school day.  This difference cannot be discounted or dismissed and has everything to do with his autism."

If you have a child in Special Education, I dare you to scratch the surface of your child's program. If you didn't think I was blacklisted in Evan's school before this letter, you better be sure that I am now. Jayme gave me the backbone to send the letter, but Evan gives me the fire.

Wednesday, September 23, 2015

School Social Group Permission Slips - The Real Truth

If your child is a classmate of my son, then I would like to explain something to you. When your child came home with a permission slip to be allowed to eat lunch outside the cafeteria in a "social lunch bunch setting", what it actually meant was that your child would be allowed to eat with Evan in a quite setting with occasional verbal prompting from his aide to facilitate conversation.

I knew that the permission slip was misleading, but I didn't say anything because last year Evan's whole class returned the slips without an issue. At my first parent consult meeting last week, I was told that "all the slips have been returned".

In this case, ALL is defined as 9 slips (2 boys and 7 girls). And Evan won't eat with the girls, so now he is eating in the cafeteria most days and I'm starting to see some problems at home. But as far as the school is concerned, he is choosing to eat in the cafe on his own, even though they know that every time he picks a girls name from the Popsicle stick jar that tells him who is lunch buddy is that day, he changes his mind from eating in a quiet space to eating in the cafe.

This is the school 'accommodating' Evan's need to not be in the cafeteria.

The school does not want you or your children to know that Evan has autism. They say that no one knows he is 'different'. I think they are wrong, and by not allowing kids to know that it is O.K. to be different, they are, in fact, reaffirming all those stereotypes that are dangerous for kids like mine.

 I want you to know that Evan doesn't like to be in the cafeteria because it is loud and overwhelming but he is kind and caring, and wants very much to have friends. (Sorry...he doesn't care so much for girls right now.) I want to put a face to the permissions slips, because when you didn't send your child's slip back into school, you denied him the opportunity to sit and have lunch with a great little kid. That hurts my Mommy heart. If we don't teach our kids now, at an age when they are incredibly open and honest and care little for social status and conformity, that it can be fun to sit and eat a quiet lunch with a cool kid who might be a little bit different then they are...then who is going to be his friend in 2 years, 5 years, 10 years?

I'm feeling quite mad at the school right now but not at you, because you probably didn't know. I hope this helps.

Friday, September 18, 2015

The Levels Program

I promised I would report on some recent successes and I'm finally following through. One of our long standing difficulties with Evan is controlling his bad behavior (like yelling, throwing, and hitting) and punishing him, so I targeted this is an area that I wanted to address with our behavior therapists. After lots of group brainstorming and one week worth of data collection to determine the frequency of these types of incidences (I'm frequently collecting data and you can often find data sheets littering our kitchen counter), our BCBA came up with a plan called The Levels Program.

The picture is pretty self-explanatory; there are three levels: green, yellow, and red. The goal is, of course, to stay on green. Evan's rules are as follows:
  • I will use nice words and speak kindly when I talk to people.
  • I will not hit other people or do anything to hurt them.
  • I will not throw things.
  • I will not yell.
  • I will be safe and not destroy anything.
The levels are explained as such:
  •  Green - As long as I follow my rules, I can have access to all of my fun toys.
  • Yellow - If I use mean words or raise my voice, I move to yellow and lose my toys for 30 minutes. At the end of 30 minutes I can have all my toys back when I complete a chore for Mom and Dad.
  • Red - If I use mean words twice, yell twice, destroy anything, or hurt someone else I move to red for 2 hours and lose all my toys. At the end of 2 hours I can have my toys back when I complete a chore for Mom and Dad.
Evan was explained the rules and was told that for each 2 hours block that he stayed on green, he would earn a check. A certain number of checks will earn him a small toy that he can choose out of a bucket (the number of checks increase incrementally but currently he is earning a toy every day). Yes, I am back to scoping out every cheap small toy that might entice him, just like the days of early potty training.

We began this program on September 2nd. At that point, Evan was yelling and screaming at the girls every day; he was not tolerating anyone near him at times to the point that we couldn't even be in the living room at all without him going crazy. On September 2nd he yelled at one of the girls and moved to yellow (yes, this caused a tantrum because, no, he didn't like it). He has stayed on green ever since.

Let me say this again. He went from yelling at us daily to not having yelled at us since September 2nd. Can you say success?

It's not all peaches and cream here, though, folks. He'll now allow other people in the living room when he is playing, but you cannot be in his space. We are working on a program to help him tolerate others to be near him during his play time (this is his solo play, in which he gets lost in his own world), and teaching him to take himself somewhere else if he truly needs to be alone; this program will take time, though, and since he isn't yelling at us to move away from him, we respect his wishes to be given space. He also still gets mad, but now he'll just cry and either calm down on his own, takes himself to his room, or requires intervention from me to calm down....no worries because this is so much better than how he was just a few weeks ago.

The Levels Program will not work forever. In fact, I'm just waiting patiently for him to explode, get reacquainted with yellow (or possibly red), and then start over from there. It's bad behavior, after all, that can reinforce good behavior and every once and awhile we all need a reminder of that (think too much to drink when out with your friends, for example).

With ABA we are literally reclaiming our house, our behaviors, our lives from autism. We have a long, long way to go but we are making forward progress and I'm feeling pretty good about that.

Monday, September 14, 2015

iPad Use in School

Change is hard, I get that. But, when change is resisted in the face of evidence of it's efficacy and to the detriment of your child, it's hard not to get frustrated.

Jayme and I have been pushing for the increased use of the iPad for Evan for close to one year. Last December we even offered to purchase Evan his own iPad for school use and we were immediately told by the director of Special Ed that it wasn't necessary because "we have carts full of iPads for student use". Huh, we wondered, then why isn't an iPad being used with Evan? It is, we were told...the one time per week that the iPad cart was brought to his classroom for it's general use. No additional use was ever discussed with us.

So, we brought this up again at his team meeting in March. It was unanimously agreed, and is written into his IEP as an accommodation, that the use of technology with Evan will be beneficial. But, at every parent consult meeting when I asked about it no one could explain to me how or when they were using the iPad.

I brought it up again, in June of last year. Forcefully. Saying that I specifically wanted the iPad used as an adjunct to his social skills group. There are great apps, I said, that allow you to create customized social stories using real pictures and voice recordings that would be great for use during social teaching. Everyone smiled nicely at me, and then I went home.

By the end of June I received an email stating that the school didn't own any social skills apps and that there was not enough time in the school year to go through the hoops of purchasing and implementing one. Bullshit, I said (o.k., I didn't say that to the school but to anyone else that would listen), the behavior therapist FROM THE SCHOOL is sitting at my kitchen table RIGHT NOW with a school issued iPad that has a SOCIAL STORY APP ON THE DEVICE. WHAT THE HELL?!

That prompted an almost immediate visit from the school BCBA who came to my house, sat at the same kitchen table, and accused me of being short sighted (HA!!) and focused only on the use of an iPad in lieu of other teaching methods (I never said this, by the way) and just because one of the town's elementary schools owns the app (the school our behaviorist comes from) doesn't mean that the other elementary school (the one Evan attends) has it. I sucked in my tears and said that it is just stupid that in the same town that two schools can't get access to each other's technology, but whatever...let me remind you THAT WE OFFERED TO BUY HIM HIS OWN iPAD AND WITH APPS 6 MONTHS AGO!! Well, that shut her up, but the school year was over so we had to put the conversation on hold.

In early August I requested a meeting with our Special Ed coordinator to revisit the use of the iPad. Silly me, no one answers emails until they are required to, but by the start of school I had a few other more pressing issues on my plate. Last week I again requested a meeting about the use of the iPad and did, in fact, get a response (squeaky wheel gets the grease, as I've said before). Before our meeting, however, I had my first parent consult with Evan's SpEd teacher (he, of course, is doing GREAT, because that's what they always say). Before I left the meeting, I told her that I was meeting regarding  use of the iPad, and asked her if we got Evan his own device, would she use it with him? After telling me that it depends on my goals and expectations, blah, blah, blah, she pulls out a school issued iPad and shows me several apps that she uses with Evan when time permits. Wait, WHAT?! I would have appreciated this information earlier, but being that it was only 7 days into the school year, I decided to be the bigger person and honestly say, thank you for showing me this...it looks great and is exactly the use that I expect in his academic setting.

I wasn't done yet, though, because Evan is currently not getting any social teaching on the playground and if they can't offer that at this point, then they sure as hell can do the next best thing and create social stories around his real world setting and use them as tools in his social skills group. So, today was my meeting with the SpEd coordinator to discuss this and - don't you know - she and the school BCBA spent part of their weekend researching apps, found one that allows you to create your own story using real pictures from your own setting, have already talked to the school psychologist and speech therapist about incorporating this into their sessions, and has the purchase order ready to submit to have it put on all 10 SpEd iPads because this app will benefit other children as well as Evan. She went on to say that should we still decide to get Evan his own iPad, they will use the app on his device to better facilitate his learning across school and home.

Holy Crap. Are we talking the same language?  Maybe they've grown weary of this fight?  Or maybe - and this is my hope - they realize that progress is good, that technology is progressing faster than public education can keep up but there are some kids that cannot afford to be held back from the benefits technology can offer. Perhaps it's a campaign to shut-this-Fishman-up, but I don't care. I'll count this as my first victory for the current school year. Stay tuned, there are more victories to come.

Thursday, September 10, 2015

Neuropsych Testing Take 2

I just got the results from Evan's second neuropsych testing (his first was 2 years ago at the time of his diagnosis). Overall, I'm giving myself a pat on the back...Evan has improved significantly in his communication skills so it looks like all the hours of therapy we have put in over the years is helping. Jayme and I actually knew this; if we ever question his progress, we only need to think back 3 years to when we  had marginal communication with him, when he couldn't tell us he was hungry or thirsty, when he didn't sing or hum, when he would repeat any question we asked him instead of answer it...he was over the age of 3 at this point, nearly 4, so it's obvious that he's made huge progress since then. The PhD testing him was the same one that tested him 2 years ago, so it was a real treat for her to see him now.

Over time, she said, the results of the type of testing she did on him become fixed. We should be seeing improvements at this age, and we did, because his brain is malleable, but it becomes less so as he gets older. I know this; it's why we push so hard for services, and I wonder why she slipped it in. It could be, I guess, that some of his testing showed no improvement. Gulp.

Where Evan continues to struggle is in his spatial and conceptual thinking...his ability to break things down and recreate them. I'm not sure I understand all the implications of this deficit, but it's something that requires increased intervention. This will start with Occupational Therapy, so it looks like I've got to pick that  private service back up as we are not confident in the skills of our school OT.

Evan is old enough now to test his executive functioning, and this showed the greatest deficit of all. As in - we are on the wrong side of the bell curve deficit. What is executive functioning? Glad you asked...from about.com, here is one explanation:

       Executive functioning may involve abilities such as:
  • Estimating and visualizing outcomes;
  • Analyzing sights, sounds, and physical sensory information;
  • Perceiving and estimating time, distance, and force;
  • Anticipating consequences;
  • Mentally evaluating possible outcomes of different problem-solving strategies;
  • Ability to choose actions based on the likelihood of positive outcomes;
  • Choosing the most appropriate action based on social expectations and norms; and
  • Performing tasks necessary to carry out decisions.
What does that look like to you and me? Here is more, again from about.com:
  • difficulty planning and completing projects;
  • problems understanding how long a project will take to complete;
  • struggling with telling a story in the right sequence with important details and minimal         irrelevant details;
  • trouble communicating details in an organized, sequential manner;
  • problems initiating activities or tasks, or generating ideas independently; and
  • difficulty retaining information while doing something with it such as remembering a phone      number while dialing.
The last bullet point is an example of "working memory". In both Evan's recent speech testing and neuropsych testing, they found that he has essentially no working memory. Apparently, it's quite necessary to be successful in school. Here is a real life example, though, and it may help you understand how we see this affect him in every day life: when his therapists leave for the evening, I always prompt him to say goodbye and thank you...he only ever says one of those things. Then, I have to prompt him to say the other. The same thing happened at school drop off this morning when his aide said, "say goodbye to Mom and tell her to have a great day". He said, "goodbye" and then stared blankly as if another command had not been given. Now I understand why; he can't keep those two simple commands in his head for the two seconds it takes to say them. Wow, right? Imagine not having that skill and progressing not only academically, but socially...it's nearly impossible.

The good news is that we can work on this skill through speech and academic programming, and you better believe that this will be our #1 objective at his upcoming IEP meeting to discuss his testing. O.k., maybe it's not the only #1 thing, but seriously, how do you prioritize these things when your teaching window is rapidly closing?

There is one more skill that Evan falls on the wrong side of the bell curve, and that is his ability to process information. Sadly, this skill has not been proven to be malleable and he will require extra time to process information for the rest of his life. Our hope, of course, is that he gains skills that make up for lack of this one, but we won't be pushing him into a career of emergency medicine, that's for sure...pretty sure you want the person saving your life to have the ability to make split second decisions.

I have to stop here, as I'm avoiding lots of things in the house to get my thoughts out. I'm wondering, for example, how many loads of kids laundry I can keep in my room until their drawers are empty? I'm up to 4...stay tuned to see how high I get. I've got to catch up on my blogging, though, as the start of the year has been busy with a couple of great ABA successes and  some school struggles, including the one that just started today when I realized that there is a mistake on Evan's service delivery grid that I never caught before I signed off on it and the school has taken full advantage and is not providing the previously agreed upon service. Don't worry, I've got the notes from the meeting, two emails already sent, and an in-person meeting with the SpEd coordinator on Monday which was scheduled to deal with something else but will be hijacked for this new problem instead.

Let's circle back to the good news as I kind of need it...Evan IS progressing. Keep up the hard work, buddy!!


Wednesday, September 2, 2015

This is What My Tuesday Looked Like

1:30 - I begin coordinating the schedules of Jayme, our attorney, our educational expert, our speech therapist, and two BCBAs for Evan's October IEP meeting.

3:00 - School pick-up.

3:25 - Home from school.

3:45 - Start 30 min session with BCBA hidden in our house while we Face Time and she runs 5           minute blocks of time to work on compliance. Evan spends the first bit of this session in tears.

4:15 - I spend 10 minutes with the BCBA following up from our session.

4:30 - I make dinner reservations in Boston for a re-do of my failed date night a few weeks ago...my head is already in a bottle of wine and fancy food.

4:53 - I take a call from the BCBA that owns the behavior therapy company to discuss the updates to our insurance issues (remember, Aug. 3 BCBS revoked our ABA coverage). Though the insurance company agreed to pay the charges from March to Aug. 3, they have instead rejected all the claims.

5:10 - I start dinner, Evan's choice of chop suey that he decides NOT to eat. :)

6:00 - Our two behavior therapists arrive. One starts work with Evan, the other starts asking me questions for an assessment called the AFLS (the Assessment of Functional Living Skills).

6:30 - Our primary BCBA arrives; we stop working on the AFLS and start reviewing Evan's new punishment system (which we began today), and then spend an hour discussing his new behavioral problems and how we are going to tweak his programming. I'll blog more about this later.

8:20 -  The therapists leave.

8:30 - I finally fit in my shower.

9:00 - Kiddos are in bed and I am officially no longer talking to anyone.

Somewhere amid those hours above Shayna tells me that her homework is to have me fill out paperwork. Hmm...nope, didn't happen; I crammed that one in this morning before she got on the bus. Turns out I was supposed to have Lily's done too. Oops.

Let me say that obviously not every day is like Tuesday. Tuesday will happen again, though, because it happens to be the day that the BCBA running the stealth mode treatment sessions has available, and also the day that our primary BCBA has available. I've had to hire a babysitter to get Lily to her music lesson and have to put Shayna on a different bus to drop her at dance class (as of now I don't have a ride home for her yet, but that starts in 2 weeks so I have plenty of time to work that out).

What I do want to impart to you is this...raising a child with autism is relentless. It is my full time job many, many days. Not all of my days, but a lot of them. When he is doing well (and even when he isn't), things crop up like insurance snafus, school problems, new research to look into. Then, when one behavior gets better, 2 more pop up. Jayme describes it as being similar to the game of Whack-A-Mole, and he is exactly spot on.

I'm not writing this for sympathy or a pat on the back to tell me I'm doing a good job. Even with all my attention to Evan, things still slip by me, like the fact that the start of school has come and three days later Evan continues to eat alone because they haven't sent home permission slips yet for peers to join him. One forward thinking Mom actually sent in her own note today, which was promptly ignored by the school. It took about one nanosecond for me to send an email about that when we got back from school pick up today.

Anyway, I'm writing this to say that this job is HARD and NEVER ENDING, and - o.k. - raising any child is hard and we could have it so much worse, but after a day like yesterday I find myself frustrated  at things like the fact that my girls' teachers expect me to have the time to fill out the emergency forms for school (the information hasn't changed in 7 years, thank you very much...I'll let you know if I move and until then, let's work on streamlining some paperwork, shall we?) when I'm literally spending MY WHOLE NIGHT in autism-land (and much of my day too). There are people in my house 4-5 days per week, every week...there is no break from this work, because when his therapists aren't here,  it is up to us to follow through so he progresses. Can you tell my mind is spinning? I'm not organized by nature, and I've got so many autism balls up in the air right now. And, two other kids, who have mostly been ignored the last two days.

Ahhh...that date night can't come soon enough...time to recharge my batteries.