Behavioral Specialist Through Family Support Services

In yesterday's post, I gave a very general overview of how the Medicaid Waiver Program works. There are many, many more details, but I doubt you want me to get into the nitty-gritty, eh? (No, I'm not Canadian...I just like to pretend to be every now and then!) Anyway, I found out today that we are looking to mail out our application in the middle of April sometime. So there is an end in sight! :)

Today I want to discuss something called Family Support Services.Family Support   Services are another avenue through which a family who has a child with disabilities can receive outside support. To receive Family Support Services (FSS), you do not need to have Medicaid or a Medicaid Waiver. I am still learning a lot about FSS, so by no means am I an expert on it. Basically what it is, though, is a program through which you can apply to different agencies for different things like emergency respite and some different material items that might be beneficial to your family to have in your home.  Now, you can get the material items through the Medicaid Waiver, as well, but if you don't qualify for Medicaid or a Medicaid Waiver, this is one more opportunity to seek out assistance. 

There are also programs funded by FSS that agencies run to help families such as ours with things like challenging behavior. I found out about the Behavior Support Program offered through our Medicaid Service Coordination agency.  With all of the challenging behaviors that I see at home, I knew this would be beneficial to us. Again, this is another waitlisted type of service. I was put on the waitlist forthe Behavior Support Program back in June, and we just finally started working with the behavioral specialist last week.

Typically, I guess the Behavioral Support Program works differently than we are receiving it at this time, however the professional who runs the program is pregnant and since her maternity leave would interrupt the flow of the normal program, they are offering me a different option that is a shorter length of time. With this option, I am being taught how to target specific behaviors and figure out the meaning behind them. For my education and therapy friends, you may know it as an Applied Behavior Analysis.

What it is, is a very scientific way of approaching the challenging behaviors we see from Miracle Man. Last week, the behavioral specialist and I met for three hours and she talked with me about Miracle Man's needs and explained to me how the program works. We also chose three specific behaviors to target during our seven-week session.

One of the behaviors I chose to focus on was Miracle Man's meltdowns. They can be very disruptive to the flow of the household. At times, they can continue for an entire evening (so 2 to 3 hours of non-stop screaming..sound like fun? Yeah, me neither.)  Another behavior that I chose to focus on is his destruction of property. He likes to cut, rip, tear, and destroy all sorts of things. He also likes to draw on anything...except paper. Lastly, I chose to address his issue of "improper elimination". Basically...he removes his diapers after they have been peed or pooped in. Sometimes he likes to play with his poop...those of you who are close to me may recall my favorite line "poopy is not play dough".  Recently, he has also decided to do a little something that I would like to call "squat and dump". He removed his diaper and went poop right in the middle of his bedroom floor...several times!! So, there is obviously a lot to work on in this area, as well. Now, when he does any of these targeted behaviors, they are not attention-seeking behaviors. They are meeting some other need within him, and that, folks, is what we are trying to figure out (and the purpose of doing this Applied Behavior Analysis).

Last week's "homework" for me after our first meeting with the behavior specialist was to track as many of these specific behaviors as I could. I had to fill out a chart where I briefly described what happened before the incident, what happened during the incident, and what happened after the incident. I also had to fill out a form called a Motivation Assessment Scale. This Scale essentially tries to break down the three target behaviors into what it is that he is getting out of doing them. For example, is it a sensory-based behavior, is he looking to "escape", is he seeking attention, or is there some tangible reason for it? We found that one of the behaviors is more tangible. And that was the meltdowns. He has a very difficult time transitioning between activities. In particular, transitioning between being asleep and being awake. So that would be considered a "tangible" reason behind the meltdown behavior.

This week, we met yesterday and discussed the results of last week's notetaking, as well as the plan for this coming week. I am actually quite excited to try this week's "homework"! We will be doing a Preference Assessment. This means that we will be looking at preferred items or activities, and preferred foods that Miracle Man seems to enjoy the most. I was surprised to learn what it actually meant to do this. I had assumed that meant that we would figure out what his favorite thing was and then use that every time to encourage better behavior. As I explain below, however, that is not quite how it works.

I will explain to you what we will be doing with the Preferred Foods Assessment before I explain the Preferred Items Assessment, because we all love and can understand food...am I right? So, a Preferred Foods Assessment, as you may have guessed, is geared towards figuring out what food, "reward", if you will, Miracle Man would be most motivated by, as well as which of his favorite treats are least motivating. I chose six different foods: mini marshmallows, M&Ms, Skittles, Reese's Pieces, Pringles, and Combos. The foods have to be something that he will like a lot, but they cannot be something that he eats routinely. I have to be able to withhold the food and only give it to him when he has cooperated fully. Now, Miracle Man's favorite food happens to be hummus. With pretzels.  But, if I withheld that until he cooperated fully, he would never eat! So the choices needed to be highly preferred, small, easy, and manageable "treats", rather than real foods that he already eats during meal times.

Later today, the behavioral specialist is actually coming to do the assessment with us because she is curious and interested in seeing how it goes. Also, she has not yet met Miracle Man, so this is a perfect opportunity for her to do so. What we will do is to sit down across from Miracle Man with all six food items on the side. I will pick up one mini marshmallow and one M&M and present them to him at the same time. I will tell him he can choose one. Whichever one he chooses first is the preferred treat. I will mark down on paper which treat he chose. Then I will take one M&M and one Reese's Pieces and present them to him to choose again. Having six different foods, we have to do this trial with all possible combinations in a systematic way. So next, I might take an M&M and a skittle and present both of them to him. Throughout this process, I will be keeping track of what treat he prefers each time in order to find out what he prefers the most. And then I will create a hierarchical list of the treats according to Miracle Man's preferences so that I can use them appropriately to reinforce good behavior. I cannot wait to see what treats he is most motivated by! It will be fun!

Now, the interesting part of this that the behavior specialist explained to me is that when I am trying to get him to cooperate with me throughout the week, I will offer him his least favorite treat as a reinforcement first. The goal behind this theory is to get him to cooperate fully--without needing his absolute favorite reward    every.single.time     he is asked to do something.

Now, the Tangible Item Preference Assessment is set up so that I choose six different things or activities that he likes to do--that are not things he uses all the time. It has to be something that I can remove (just like the treats), and only give to him as a reinforcer. So, his toy electronic smart phone that we use to get him to go on the bus in the morning (every morning) is not the best choice.

I chose stickers because he always goes into my craft drawers to take my stickers out...and put them all over our furniture. But perhaps, if he is earning stickers in a more controlled way, it will be highly motivating to him (and also safer for our furniture)??? That's my plan, anyway!  I also chose bubbles, because I thought it would be kind of fun to reward him with a quick bubble game or activity after behaving accordingly. Miracle Man loves music, so the next item I chose was allowing him to listen to his favorite song on my iPod. And for the fourth item, I chose to sing a song of his choice together. Typically, Miracle Man will stand in the middle of our kitchen and sing songs over and over...and over again. Sometimes, I sing with him, sometimes I don't. Sometimes he wants me to sing with them, other times he doesn't. But, if I offer it as a reward, maybe he would like to sing with me? We shall see! The fifth item I chose was for him to be able to choose a TV show that he could watch as a reward. And the sixth item was to be tickled. He loooooooves to be tickled, and I mean loooooooves it!  He often asks to be tickled! He is so adorable when he giggles!!

After we figure out his preferences for these items, we will then be able to start talking about plans for approaching his challenging behaviors...and tying in his preferred reinforcers. I am not sure yet exactly how that will look, but the behavioral specialist did explain that because Miracle Man understands "first, then" already, we will be using a lot of "first, then" approaches. For example, first he has to pick up his toys, then he can choose a TV show. Or, first he must eat his dinner, then he can have an M&M. 

Regardless of what preferences Miracle Man ends up having, this is going to be an exciting afternoon here!  It's like my own positive reinforcer!

Wishing you many positive reinforcers today,
Marathon Momma

Stickers for Dinner

It was a regular old evening here in our house tonight.  The kids were running around screaming and demanding snacks while I was making" dinner". Then Miracle Man came up to me, holding a big brown nugget of poop, at which point Chub-Chub saw the poop and decided he needed to use the potty...as in RIGHT NOW! In between the stirring of the would-be dinner of microwaved eggs, the potty assisting, butt wiping, diaper changing, and washing hands eight times, the phone was ringing. And of course it was a call I had to take. 

When the phone call was finished, the boys' bowels were empty, the diapers were back on, and the hands were cleaned of any fecal matter (eeeewwwww...gross!!), we finally sat down to eat.  Chub-Chub began gobbling up his portion right away, hungry and happy to be eating.  Little Miss decided she didn't want to.even.try.the.gross.eggs.  (To which I politely  responded that she will eat them now or go to bed hungry).  And Miracle Man nibbled one bite, lost complete interest, and began throwing the eggs on the floor.  Yeah, I'd say pretty much a typical evening.

Sitting next to Miracle Man, I attempted the usual spoon-feeding, which of course didn't work.  He was having absolutely no part in eating those eggs, refusing to even open his mouth.  I tried something new, though.  I said to all three kids (of course it was mostly directed at Little Miss and Miracle Man---although I knew he wouldn't "get it", so essentially it was a challenge to Little Miss), "Whoever eats their eggs first gets a prize!"

Well, Little Miss embraced the challenge and practically sucked the eggs up like a vacuum! (That's my favorite appliance, remember?)  As soon as her last morsel was devoured, she immediately requested her prize and I sent her to the prize drawer.  She returned to her seat with a page of stickers...something that instantly  caught the attention of Miracle Man, who looooovvveeesssss stickers!  And then it hit me...that epiphany that I needed right at that moment: 

"Miracle Man, would you like a sticker?"
"Yeah."
"Okay, if you eat your eggs, you can have a sticker!"
"Yeah."

I spooned the eggs into his mouth.  And the little stinker ATE them!!! I had to keep promising the sticker for each bite, but I was able to feed him quite a bit of what was on his plate!  It was a huge breakthrough!

It may be only a temporary solution.  But it may not be.  Either way, I will take it!  And if it does work over the long-haul, we will be stocking up on stickers!!!

Relieved at the moment,

Marathon Momma

Momma Bear and The Sensory Kid

Miracle Man has always had sensitivities and "quirks". For instance, the textures and temperatures of foods affect whether or not he will eat them.  He refuses to eat chunky or chewy foods, but likes softer textures.  So, I can get him to eat hummus and guacamole (I know, right?!?!), but I have a hard time getting him to eat avocados, beans, or apples.  He will eat smooth yogurt (even plain greek), but if it has real fruit in it, he won't even let it get past his lips.  If one smidgen of chunky food gets in his mouth, he spits it.  Right. Back. Out.

When he was much younger, I could not vacuum the living room or turn on any appliance that sounded anywhere near  as loud as a vacuum.  If I did, he would start shrieking and screaming his head off. It scared him to death! So I used to vacuum around his sleeping schedule. Luckily, most of the time...if he was sound  asleep...he would continue snoring away and I  would be able to get the crumbs and dog hair off the floor.

It could get tricky, though, on days when I needed to vacuum several times throughout the day...instead of only  during naptime. You see, we had this rug that seemed to magnetically or cosmically attract every.single.speck  of dust in the entire  house, plus the neighbor's house. Tragically, it used to need to be vacuumed sometimes up to three times a day! With Miracle Man's sensitivities, if I needed to vacuum while he was awake, I felt like I was      tOrTuRiNg      him.  He would scream and cry hysterically, and it was extremely difficult to soothe him. Typically, when he was upset like that, he wouldn't calm down for at least an hour.  So, as a busy mom already strapped for time, sometimes I had to choose between keeping the rug clean of debris and the meltdowns that ensued, or letting go of the mess and keeping Miracle Man feeling "safe".

As the vacuum-phobia-screaming thing continued, it also escalated.  There came a point that whenever Miracle Man even saw  the scary-loud-sucking-up-apparatus, he would fffrrrreeeeeaaaaakkkkkk out...before I even turned it on!! We needed to find a solution so that I could vacuum with Miracle Man around.

So, with the help of his therapists, we tried to desensitize him to the sights and sounds of this machine that I , for one , am in complete awe of.  I must digress here for a moment because this is a topic that I think about all.the.time...I absolutely love vacuuming!  Well, not the actual lugging around, sweating, hard work part of it.  But, I am always fascinated by how AMAZING that invention is!  I mean, whoever came up with that thing is like my BFF for life!  I marvel at its awesomeness whenever I plug it in and begin sucking up dust, cheerios, powdered sugar, cat fur, cat puke, crazy loom bands.  Ooooo!  I love ,  and I mean LOVE vacuuming up those !  It gives me this twisted sense of satisfaction to just...zooooppp them up!  Gone!  No longer all over the floor!  Hehehehe!  (insert evil grin here)  You simply cannot deny that the vacuum is totally AWESOME! 

Anyway, back on topic...so to desensitize Miracle Man, we would have him in one room with the therapist and me in another room with the vacuum.  We would start by telling him that I was going to turn the vacuum on and then gradually bring him closer to me.  Each time a therapist was here, we would work on this, getting closer and closer to me, and then finally bringing him into the room where the vacuum was. In the beginning, we also would cover his ears when necessary. Over time, we would have successes, and then failures. But for the most part, the desensitizing worked. I was once  again  able to turn on my fav machine and go to town on those dust bunnies, dried up pieces of scrambled eggs, bits of pizza crust, Lego pieces (sacrilegious, I know), you name it!

We were so successful, in fact, that for quite a while now, Miracle Man has been able to handle the sounds of things like the vacuum or the blender like a champ, especially if I preset him (tell him ahead of time that I'm turning it on). I usually also preface it with a countdown of three so that he knows exactly when the noise will begin.  But our success was so profound, I could even vacuum right.next.to.him! 

Over the past month and a half, though, he is having a tougher time with his sensory processing. He is back to screaming and shrieking when the vacuum is on.  And it seems like every day, Miracle Man is having a harder time with noises. He has begun covering his ears for every loud sound he can hear, like the garbage truck going by while he is outside.  And while he is covering his ears, he is telling us, "Loud.  Loud.  Loud." 

Too, we just got a door alarm for the house because we're worried about the kiddles finally escaping to find a better set of parents. Naturally, whenever the alarm goes off, Miracle Man covers his ears and says, "Horn. Horn. Horn." It takes him several minutes after the "horn" is done before he stops covering his ears and he can move past the disturbance. His hearing (or his processing of what he hears) has gotten incredibly sensitive! 

On Father's Day weekend, we tried bringing the whole family to the fireworks.  Big Mistake.  Big. Although we had anticipated some  anxiety, we weren't completely prepared for his reaction.  He shrieked and screamed so badly that it was clear to us he was being Harmed.  We kept trying to move away from the blasts of beauty to find a better place to be; a place where he couldn't see the lights.  We ducked behind a tractor trailer next to the midway of the town fair we were at.  He continued to scream, and he looked...Terrified!  We covered his ears and moved still further back. Now, you should know that when Miracle Man has a seizure, his eyes get all funny-looking and his pupils dilate.  His eyes just look so...different . It makes him look like a different child. Well, at the fireworks that night, he started to get "that look" all over his eyes. We were very nervous, and he was so distraught, that we ended up heading to the car.

Safely inside the car, the booms and bangs were muffled, and the lights were hidden from view.  Miracle Man began to settle down a bit, but he was still fretting.  It was very scary to see him like that. And even though I had anticipated him having a hard time, I didn't expect him to freak out quite so badly.  My nerves were shot.  Momma Bear had had that fight or flight reflex.  It took a long time for the adrenaline coursing through my body to subside.  I have since decided that we need to get him a pair of those sound-deafening ear muffs.  We will probably also use sunglasses when there is so much visual stimuli in the future, as well.  But, man!  Times they are a changing for our family!

So, the next day, we were headed to a car show and Prince Charming wanted to wash our car before going there. We brought it into one of those automated car washes, and within seconds, Miracle Man was having the same expression on his face and that same shrieking-screaming-I'm-terrified reaction. It was so bad that I had to get out of my seat and climb into the back seat with him where I could cover his eyes and his ears to block all of the sensory stimulation. Again, he had that same "look" in his eyes that he gets during a seizure.  And again, there was a very worried momma.  Naturally, once we exited the car wash, he calmed down.  It took quite a bit longer than that for his momma to calm down~especially since it was the second day in a row! ;)

It seems these episodes are becoming more and more frequent.  For example, we recently went out to an old-time ice cream shop. There was a painfully long wait with the kiddles, and then it was finally our turn to be seated.  The waitress brought us over to our table and above our table was a fan. The way the fan was positioned, it broke up the light on the table that was coming from the lamp next to the fan. This setup created a strobe light effect and, once again, Miracle Man started to "freak out".  I thought he might have a seizure.  Luckily, I spoke with the couple who had been seated next to us at the same time.  I briefly explained the situation and they had no problem at all changing tables with us. We were very  grateful  to them!  We were able to sit and relax a while. And we definitely enjoyed our marvel-licious ice creams from the safety of our new booth!

Now, it's not just his hearing that has become super-sensitive.  So has his sight.  The lights in our house that didn't use to bother him at all, for instance, suddenly do. One morning we laid him down on the living room floor to change his diaper, and the light overhead was bugging him.  He was starting to get upset to the point where we had to turn off the light to complete the diaper exchange.  There have been several other "insignificant" moments where Miracle Man has reacted to lights lately. But none of them interesting enough to continue this paragraph. So this paragraph is done.  The End.  (I feel like a second grader. Lol)

I have always felt like I've been on hyper alert with Miracle Man. But lately, it seems like I have to be much more aware of sounds and lights and things that could upset him. That also means that bringing him to things like the movies is not likely to happen anytime in the near future. As I said earlier, I will probably be getting the noise-deafening ear muffs sometime soon, but in the meantime, I have to be very vigilant about what he is exposed to that might set him into a panic.  I am also anxiously awaiting a return phone call from his neurologist to see if he has any more input for us.  Until then, I am Momma Bear and I wait in the forest...watching from afar (but not too far), allowing him to navigate his world with some independence, but ready to attack those lights and sounds at a moment's notice!  RoAr! 

Yours from the Forest of Mommyhood,

Marathon Momma