Manding and Tacting

Manding and Tacting (nerd speek for requesting and labeling)
A quick and dirty look over the past week.

• Zach has been spontaneously manding for milk, apple, pretzels, and chips (potato chips) at home this last week when the item was present (sitting on a counter or table).
• He also manded for "tickles" after a prompt.
• He has had a lot of spontaneous tacting this past week to include: penguin, square, circle, blue, green, Thomas (and a few others I didn't document nor can I recall) as well as the phrase: "wake up", and "boo" (wanting to play a peek a boo type game).
• He has shown us that he is able to play another game on his computer that we did not realize he could play. (That makes 2 new games this month) It is a sort of shape-sorter game.
• He also has responded to some 1-step directions: sit (when standing on his chair), lift your dupa (when getting dressed while laying down in an effort to get pants up), give me your foot (when putting shoes on), pick up and put in after being prompted.

The Meeting

I believe that we may have had success. We met with the lawyer before the meeting. I was a Nervous Nelly and spent most of this pre-meeting time rambling. I said a prayer that I got it out of my system before the meeting. Then there was the meeting. I kept on reminding myself to "listen, don't speak, listen, don't speak". I did.

I found out as entering into the room to have the meeting that the school district was not notified that we were bringing a lawyer. They dealt with that very well, and said if we came to an impasse, they would halt the meeting, and reschedule until their lawyer was there. I appreciated that.

We had asked our previous BCBA to conduct a VB-MAPP on Zach a few weeks ago. She ran this tool, which indicates levels of verbal skills, problem behaviors, and transition abilities. Transition abilities indicate if the child is progressing in a pattern that is successively more independent in an effort to get them in the least restrictive environment educationally. This same tool was used in May and in August.

The results of the VB-MAPP indicated that Zach has shown a regression of skills since entering the school program. When I first reviewed these results, I was shocked at the level of regression. I was deeply saddened about this and actually considered if we were doing the right thing by having him in the school at all. We reviewed all of the options again to see if there was a more appropriate fit. I consulted with the "experts/specialists" to indicate what the best option was. The combined school with itinerant services seems the best option. A school option alone is not meeting all his needs, a home program in practice was not fully effective in our experience, Zach was resistant to therapists at home and the home environment was becoming an aversive.

Zach loves going to school. He is getting the idea of structure and routine. He is accepting other individuals into his life. These are all important.

During the course of the meeting I did review Zach's schedule at the school. The county representative actually requested an additional session of speech a week ( he will now be receiving speech 5 times a week). I was surprised by this - but actually OK with it. What I feared was that they would reduce anything else we requested by the this time.

The school then asked the director of the ABA program at Zach's school what she recommended to get Zach back to his progression of this summer. She deferred the question to me. I hated this. I really wanted her to speak to this. I was a little flustered since I oh so intentionally was trying to keep my trap shut. Had I gone in there expecting to speak to this, I would have probably unintentionally rehearsed some key phrases. But here I was having to respond on-the-fly. I stumbled a bit, but the gist of my request was that I wanted 2 hours a day of in the home ABA on top of the school program. I did not request a 1:1 aid in the classroom. Although I think this is a good idea, it wasn't top priority. However, I am in the process of trying to devise a strategy that would in effect do this. I will be attempting to find a few interns at SU or LeMoyne who are looking for internships for next semester and hoping that SPICE can add them in?? BTW - if you know of anyone, let me know! PLEASE!

We then discussed the "who" of this matter. I basically stated that H. our EI BCBA therapist would be a good fit: 1) because she was familiar with the case, 2) because she used the same approach and had a similar philosophy to Dr. P (the ABA director at Zach's school), and 3) because she was available.

There are some major contractual issues (hoops that need to be jumped) in order to get things in place. The problem is, they can only bill a speech person for 1 hour a day - this is the goofiness of how contracts work - they have nothing to do with the reality of the situation. I hate when protocol/policy/process dictate how to do something and one has to retrofit what makes sense into some limited scope. Uugghh. Saw this at work, read Dilbert cartoons about it, and now have to deal with it with my kid. I pray that we receive good news by the end of the week that this can be worked out somehow. 1 hour a day saves us roughly $12,000, 2 hours will save us $24,000. (I am not going to lie to you - I still have hope that we can one day redo our kitchen as we intended when we bought our house... I am trying to keep that dream alive. LOL)

So there you have it - good news, but not smooth sailing. Please say a prayer that they can finagle a way to handle this situation. I keep on thinking that we are set until May, and then what? Take each day as it comes....

Friends and pursuing lofty goals

What happens to friends? Sometimes they seem to be little Energizer Bunnies who go on and on. Sometimes they fade quickly. And sometimes they go on to a point and then fade. Does the energy that went into the relationship dissipate or does it go somewhere else?

Relationships require work - some are easier and more fluid, and of course this all depends on your circumstances. Since I basically sucked at relationships before all of this craziness, I am surprised anyone has stuck with me, especially with my definite negligence. There are a few friends I have who do not have children and probably think I am just a whiny fool - and they would be right by the way - but as I hear stories of being single and dating issues or work issues - I feel that is a world so far away from my own right now. I sometimes get nostalgic. I remember purchasing my first new car, driving down 81 speeding with the moonroof open on a beautiful morning, with my makeup perfect and music blaring, no gray hairs BTW, and a cute outfit, on my way to my job, where I would then go to grad school after work and hang out with more smart people, grab a bite on the hill, and look forward to a weekend where I would be wined and dined by a cute guy. I become a tad wistful - and then I laugh remembering that I would be jealous of friends who already had families. Of course, no one I knew at the time had a child with special needs. Would I have still been jealous?

I want others to know: as much as I rant/complain/b*tch/etc., I am happy. I am probably not very balanced. I am teetering between out of control and merely stressed - so easily. Things are sort of pushed just shy of the limit - operating at 95% duty cycle, not quite 100%, but almost. Then something unusual happens that really isn't all that bad, or sometimes is all the bad, and now the system is requiring more than 100%, and that is where we run into trouble. Life is like operating on schedule all the time, with almost no slack

If you have no idea what I am talking about, think of it this way:
Scenario 1: you give yourself 25 minutes to get to an appointment that usually takes 15 minutes to get there. The trouble is, you get behind a school bus dropping off students every 100 feet, and then there is a police check on the on-ramp to the expressway. When you arrive at your location, all the spaces in the parking lot are filled. You park illegally praying not to get a ticket, and find out when you enter, that you have been misdirected and are at the wrong location. You run back to your car, which hasn't been towed or ticketed, thankfully, only to discover the car has a flat tire. You go to call the office where your appointment is to tell them you will be late, and realize your cell phone battery has died. You then realize you left your wallet at home. And then it begins to rain.

Scenario 2: Or you give yourself 15 mintues to get to your appt and all goes smoothly.

Its a crapshoot as to how life is going to be day to day. Time is the problem with most of our circumstance. Everything we do takes triple the time it used to prior to our intervention. We live a life of exceptions: special diets, therapists, doctors appointments, research, ailments.

I have always hated the term "sandwich generation" for some resason. I am not sure why. I think there is an implication that this phenomenon of taking care of multigenerational family members is a new one - although in my ethnic family background, it is very typical. I guess I am in that circumstance right now. I am taking care of wee little ones, and have an aging widowed mother to help out with. And both the wee ones and the elders have much going on: SPD, autism, lung cancer, COPD, asthma, and a hip replacement.

Have I ever mentioned that I am not a "foot" person. If you are like me, you know what I am talking about. Feet give me the heebie jeebies. All, except cute baby feet. Sophia's feet are beginning to lose that appeal now that they are a size 1.5 ( and she is only 5!) Alright, so I am cleaning up puke, poop, snot on a regular basis, right? I can do gross stuff with ease. But my new duty to my mother is to get her orthopedic socks on in the mornings. Yes, I have to deal with old people feet. Mom doesn't read the blog - and you all better not snitch on me, but I gotta tell you, this is not a fun task for me! But I do it.

It's hard to communicate to anyone that there are so many things you do in life you do not enjoy, you do not like, and you have to do them anyway. And all these things that you really don't want to do, but know you have to do, take time. And time is limited. These things you do take away time from things you would rather be doing - like hanging with friends. But what tends to happen to me, is after Zach is off to school, Sophia is put on the bus, the visit to Mom's to take care of things like putting orthopedic socks is done, then there is housework to do, phone calls to make, paperwork to file, etc. and then Sophia is off the bus, and it's time to get Zachy from school, and then a quick lunch, and on to therapy, and the doctors appointments, ballet, dinner, homework, baths, reading, passout, and begin to do it all over again the next day.

I know a lovely young lady pursuing her degree in medicine. She is bright and talented, but her endeavor still requires her to work, and work hard. When I had the opportunity to speak with her at Thanksgiving, I realized we probably had similar lifestyles. She said she knew med school would be tough, but she didn't realize how tough. She didn't get the chance to elaborate, but I felt I could probably figure out why. It's the commitment level - it's the never ending studying. No breaks. No time for socialization or partying anymore. When you are trying to achieve something, more often than not, you have to sacrifice other things that are important to you too.

I feel honored that I can help take care of my mother and my children. It gives me a peace of mind knowing we don't have to rely on strangers to do everything. I am sure a lot of people in my life think I just don't "make the time" to do things like take care of friends. They do end up getting the short end of the stick. I do care, I still love them. In fact, I miss them. I miss my family too. I don't see them much. However, right now, I am an Olympic athlete in training. The sport? Zachary autism triage.

The good news - things are happening with Zach. Things are sort of clicking with him. He is accepting more people in his life than he ever did before. He laughs with people, will even pursue engagement with people. He still perfers people he is more familiar with. So if you want to have a relationship with Zach, realize this, this is not about the occasional "quality time". I always felt the notion of quality vs. quantity time when it came to children was interesting. People who feel that structure, planned events with their children can make up for their lack of presence are being naive. You can't force moments to happen. But then again, old school thinking of not playing with your children but jsut being around, and letting them figure out things on their own is insufficient and somewhat negligent too. Just because you are nearby your child doesn't make you present. I think of all the times when I start to tune Sophia's never-ending ramblings out, and if I did that all the time, I would surely miss some of the best philosophy of the 21st century! Zach's autism has made the notion of quantity and quality extremely clear for us. If you are just around Zach, he will tolerate your presence, but if you want him to ever come up to you, look you in the eye, and try to engage you, that is going to take some regular commitment of purposeful playing with him. Just ask his teachers who came to the house during Thanksgiving break!

Tomorrow is a big day, as you may know. We meet with the school and the county. The $25,000 question will finally be answered after much delay. The stress of this single event has been more than any final I ever took, more than any presentation I ever gave, or just about any other event I can recall from my past. Thanks to all of you who realize I do care, even though I don't often make the time to show it. I appreciate the cheering squad more than you know.

Speek Softly and Carry a Big Stick

Speek Softly and Carry a Big Stick. Or in our case, say as little as necessary and let the team do their thing. IEP meeting time, you see. November 30. Gonna move Thanksgiving back a week in fact. Just kidding.

We have a lawyer this time, a recording device, an updated evaluation from an MD with a recommendation for increased therapy plus a 1:1, an updated evaluation relative to Zach's verbal ability which shows regression as compared to this summer, and a verbal agreement by the director of the ABA program at Zach's school to concur with the recommendation/request for Zach to receive additional hours at home. The director will be present at the meeting, and has indicated that she will speak to the data we will present, and has discussed her recommendation to the director of the school who said she will also be present at the meeting. According to the ABA director, both her and the school director are on board for the request. Also to be used, as needed, is the case that a fellow student of Zach's has just received approval for both the school program and home based services simultaneously, showing precedent of "double stacking" or providing a school program and itinerant services simultaneously.

The data we will present shows a regression. Actually, a huge regression. If you were wondering the reason for my silence a few weeks ago - that has a lot to do with it. Since putting Zach into the school, he has been less verbal. However, when I reviewed the recent report our in home therapist wrote up, and in particular the graph of his skills, I was nothing short of overwhelmed with how deep a regression this is. My sails deflated, I moved nowhere.

Do I still think the school program is the right option? Yes - if we get home services provided as well. Zach cannot be in the home all day receiving services - it doesn't work for him. He gets edgy and wants to leave, cries and tantrums. He can handle some home based services, but not 40 hours a week worth. 15 hours I believe would be OK. Plus, lets not forget trying to get the right cast of characters for a home based program. Yikes.

This is hard stuff. I pray that things go smoothly. I know I have right on my side. I know they have financial restrictions and a bad economy on theirs. The more now, the less later. I do believe. Good may prevail. I just have to keep my big trap shut.

Ruminations of Chuck E Cheese

We had our first ever visit to Chuck E Cheese's to help Sophia's friend celebrate her birthday.

Sophia and Zachary both appeared to have a decent time. Of course, this is two sensory kids going to a place that insults my not as sensitive senses, so I am not sure what this felt like to them. I can tell you this, at two hours into the festivities, they wanted out. No meltdowns, just out. Steve wanted out likely more than anyone.

A couple of observations about Chuck E Cheeses:
1) I now know where all those people that I see at the State Fair are in the off months.
2) The amount of serious cleavage and revealing clothing I saw (and found rather disturbing) rivaled that of the pick up joints I traversed in my wild younger college days. Are people actually looking to mate there?

Like almost everything in my life, I cannot go very far without meeting someone who I end up talking to who brings me back to a connection with autism. A woman was asking about getting together for a playdate, and I mentioned afternoons were busy because Zach had therapy, one thing after another, and she is good friends with the woman who began FEAT. We talked for almost an hour, making the CEC experience a lot easier to tolerate for me. She was incredibly sweet, someone I could see befriending.

I love it when I meet terrific people who are understanding and don't have any children on the spectrum. She knows what ABA is, what the GFCF diet is, what regressive autism is, the number of hours of therapy, the sensory issues. Guess that's what love does - she has a friend whom she loves and has had to watch go through the autism business, now she will likely forever be sensitive to others. Thanks be to God for people like this.

As for Chuck E Cheeses, Sophia said that's where she wants to have her next birthday, Daddy says he thinks not, and the proceeded to douse her with hand sanitizer. 3-4 day incubation period for most common viruses/germ based illnesses, so let's see how we are doing this Wednesday. Could be an interesting Thanksgiving.

RES (Red Ear Syndrome)

Go ahead, I dare you. Google red ear syndrome. Google red ear autism.

As I amused myself yesterday afternoon cleaning the you know what that I discussed in my previous post, I realized something that the teacher told me two days ago while picking up Zach from school:

Zach's ear was red today, but I noticed just the one ear was red.

Damn damn damn. Of course he puked, his ear was red. He came into contact or ingested something. This is the stuff that drives me nuts. We used to tell the doctor about Zach's puking. "Some kids just puke" was the response. We told the doctor about the red ears: "nothing to be concerned about, it's just he way he is."

After months of going through this we determined there was a correlation. He doesn't always puke when his ears are red, but there is a better than average chance when it happens. Since putting Zach on the GFCF (gluten free/casein free) diet, his puking went down from 3 times a week, to maybe once a month. Big change. Not annihilated, but a lot better, and a much welcomed difference. And the red ears - maybe 5 times in a years time.

Anybody around Zach before the GFCF days can tell you - the kid didn't vomit - he exploded. Every family member, several close friends, and even some not so close friends had the opportunity to witness this. I can recall July of 2008 being seated at a table close to the bride and groom at this lovely wedding of Steve's cousin. I remember thinking to myself "damn - why did they seat us here." We were seated with some lovely grandmother types, friends of the bride's grandma, and Mt. Zacharius erupted. The bride and groom came running over to see if all was OK. I was mortified. On a separate occasion, my childhood girlfriend came into town whom I hadn't seen in like 20 years, and sure enough Sir Barfs Alot did it again. There was no escaping the wrath of the Vomit Monster.

When my mother in law happened to notice Zach's red ears, I knew that Steve and I were not paranoid parents - there indeed was something unusual with the way his ears (almost always just one) would turn very red and even swell. I brought him in to the doctor - no ear infection.

I Googled and saw a strong number of parents having similar complaints. I spoke with other parents, and heard the same complaints. In this 1% community called those with autism, it doesn't always appear, but it certainly doesn't feel like it is a negligible percentage either.

You know what is hard about being an outlier - if you don't meet the set patterns the researchers and scientists have made their laws about, you don't mean anything meaningful.
Pediatricians, an allergist, and a gastrointerologist have given us nothing other than the standard: "the gluten free and casein free diet has never been proven to help kids on the spectrum." The allergist at least threw us a bone and told us that she had other clients who were using the GFCF diet and also indicated that it was helpful.

I am trying to figure out how they would study this diet with the appropriate statistical environment.

If you ask me if it is the gluten or the casein - I really can't tell you. It may be one, neither or both. I am hoping that we can one day get him off of it - it is tiresome somedays. But we are OK with it. Thank God for Wegmans, NaturTyme, and the manufacturer of all those products that help those with celiac's and other allergies. We are marking one year on the diet. A lifetime of it? I hope not. But if it helps, we will do what we need to do.

At some point, we will gluten challenge Zach. What makes his ear go red? I don't know. But I just don't by the "some kids just" business.

Why Autism Stinks... Literally

OK - so here is a difference between kids who are typical vs. those with autsim:
Zach threw up yesterday.
In the living room.
On the nice new wool rug and glass coffee table.
He told not a soul.
I found it today all dried and hard and impossible to clean.

Yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck yuck.

Have you ever tried to clean dried up barf before on your lovely slightly delicate formal living room decor?

Zach likely came in where I was right after doing it. A kid with typical communication and social skills would have told me "I barfed" or "puke" or at least "I don't feel good". Zach likely jumped around like a little Tigger and asked "chips" or "tings" immediately afterward. No warning, no notification.

As I was cleaning (or attempting to clean) the mess, Sophia came in the room and announced that "the troublemaker is now Mr. Stinky Pants". By age 3 we had Sophia potty trained. When can we expect this for Zach?