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

State Services for Miracle Man

For about the past year I have been working on getting Miracle Man services through our state. He already receives services through the local channels, and attends a special education preschool program. He goes there every day for about 4 1/2 hours. While he is there, he receives many different therapies daily and throughout each week. Those therapies are all geared towards helping him grow socially, cognitively, and physically.

At the state level, there are programs out there that can assist him in ways that are above and beyond the scope of the educational program. One of the ways our state helps families who have children with disabilities is a Medicaid Service Program. I am not sure how it works in other states, only how I am experiencing it in my state.

In any case, through the Medicaid Service Program, children with disabilities whose families are at a certain income level can receive the state services and programs.  If you do not meet income eligibility, however, there is another option in order to receive services for your child at the state level. This is called a Medicaid Waiver Program. To receive any kind of service through this avenue, you first have to apply for the Medicaid Waiver.

I started this process in the spring time of last year. It is quite a lengthy process, but once we get through it and can start receiving services, it will totally be worth it! So the first thing you need to do in my state is go through a "front door" program. When I did this, it was before they implemented new regulations. I got in just in the nick of time. From what I hear, it is quite cumbersome now. In any case, for me the "front door" program consisted of meeting with somebody from the Office for People with Developmental Disabilities (OPWDD). At the meeting, the gentleman that I spoke with gave me paperwork and outlined for me a basic idea of what the program can do. After that, I was sent on my merry way to start contacting agencies that provide Medicaid Services and get a Medicaid Service Coordinator.

The Medicaid Service Coordinator does 90% of the paperwork, with my assistance. Sometimes acquiring a Medicaid Service Coordinator is challenging, especially for the younger children. I called around to several agencies and asked to have a Medicaid Service Coordinator, but many of them didn't have any availability. At the agency that I'm with now, I was actually put on a waiting list initially.

Every time you contact an agency to acquire a Medicaid Service Coordinator, the intake person gathers information about your child to see if their agency can support your child and service her or him properly. So for each agency I called, it meant that I would be spending at least an hour on the phone talking with the intake person explaining Miracle Man's complete social and medical history. And at the agencies where I went a little bit further, I then had to repeat the entire same story with another person.  I spent quite a bit of time on the phone in the summer and then again in the fall. 

In the end, the agency we were waitlisted at was really the best fit our family.  Luckily, by the time I had done some of the legwork with the other agencies, our agency had an opening for us. And, for those of you in the "know", I never actually got as far as the start of the application with any of the other agencies.  It was just a lot of bureaucratic red tape.
 

So all of these things take time, and several months later, in the middle of the fall, I was assigned a Medicaid Service Coordinator who would help me get the Medicaid Waiver application completed and sent out to the state. I've been working with this lovely woman for the past several months. She fills out all of the paperwork, but we meet several times for several hours each time...going over history, medical needs, social needs, everything that has to do with our little guy. Then she goes back to her office and fills out all of the paperwork.  She then contacts me with changes that need to be made, or questions that she has. I believe that we are nearing the end of the application process, and then we will be sending it in and waiting to hear back from the state.

Once the application is approved, it will still take some time before we can start receiving some of the services that we are seeking to meet Miracle Man's needs. I can't wait until that happens! One of the things that we will receive is some respite. But, it is going to be several more months before all of that can take place. I will explain how respite works in another post.

For now, though, I am in pain, and completely exhausted, so it's off to bed for me. It was a long, very challenging day. Good night all!

Wishing you wonderful dreams,

Marathon Momma

The Sound of Silence

A rough several months have gone by without a post from me. I think I should probably explain why I don't write very often. You see, I have always hated complaining. For me, it's kind of like that saying, "If you don't have something nice to say, then don't say anything at all." While I do know that saying is not intended for this purpose, it still feels appropriate to me. When I'm having a flareup or things are really difficult and there are many challenging things happening, I don't want to keep writing about the negatives and how difficult things are.  So I usually try to write posts that are upbeat or uplifting in someway. Even if it was a difficult time, I try to find the positive in the situation or else I will try to write about something that I think is humorous. So when you don't hear from me for a while, it usually means that I'm not doing too well, and I'm having a difficult time finding something positive to write about.

The truth is, though, the last couple of months have been extremely difficult. Things of been crazy with Miracle Man, Little Miss, Chub Chub, and myself.

Miracle man is doing well in school in a lot of ways. He has made huge gains in several areas, especially with his speech. But we are still struggling with a lot of things as well. The good news is we are finally getting a chance to go to the Epilepsy Monitoring Unit at the local hospital. This is something that we have wanted to do for at least a year, and now we finally get to go.

The major catalyst for this opportunity is that Miracle Man had an episode while he was at school recently. He was sitting down at the table and the teacher's assistant was talking to him, but he wasn't responding. When she looked at him, his eyes were rolling into the back of his head. Next thing she knew, he had fallen off his chair and bumped his chin. This was the first type of seizure that we have seen where he didn't hit his head hard before having one. So, on the one hand, it's scarier and more frustrating that he had one without bumping his head first. But on the other hand, now we get to finally go to the Epilepsy Monitoring Unit and hopefully get at least one diagnosis. He is 3 and a half years old and he still does not have any diagnosis other than developmental delay, even though every one of his doctors believes he has several things going on. Having at least one diagnosis would be great!

We will be doing this in a few months. I do not have the appointment scheduled yet. I have to wait for them to call me. But, when we do get to go, this is how it works: I will take Miracle Man to the hospital and he and I will camp out there in the room. The entire time we are there, he will be hooked up to electrodes to run a long-term EEG. We will stay there for up to as long as a week. Hopefully we will get some concrete data to prove that he is having seizures during that week.

I am really glad that this whole experience will be in a month or two, and not right now. For those of you who don't know me well, or don't follow me on Facebook, my daughter was just in the hospital for a week. She had a pretty severe kidney infection. We are extremely grateful that she has healed well and is doing much better. She has to go to the urologist next week to have some testing done, and we are hoping that everything comes back normal.

In any case, it was a terribly difficult time on our family while she was in the hospital. It will be much easier the next time I am at the hospital with one of our children for a lengthy time because this time it will be planned. We will know far in advance that I will not be around at home to help out with all of the other kids and pets!

All of the stress and extra work over the past several months has really taken a toll on me. My body is barely making it through each day. I am extremely fatigued at this point. In fact, This week I have been struggling with getting out of bed pretty much at all. One morning, Prince Charming had to get everybody out the door without any of my help.  I simply couldn't get out of bed.

And my pain level has been high as well. Everything hurts. My legs, my ankles, my feet, my hips, my back, my arms, my shoulders, my hands, everything.

When I was in graduate school, I had developed carpal tunnel syndrome. I had to wear braces on my wrists for quite some time. But once I was out of school, everything resolved on it's own. I wasn't typing like a fiend anymore, so my wriss and forearms were able to relax. I haven't had this in a very long time. It's been about 15 years, actually. But, now it seems to be back with a vengeance. My wrists and forearms are so bad right now, I'm having trouble holding anything even as heavy as my phone. I am also having trouble writing, twisting knobs, grabbing at things, and of course typing. This entire post has been dictated so that I wouldn't have to type. Buckling car seats are a particular challenge for me. I try to not have to go anywhere if it means I will have to buckle the boys into their car seats. It is really annoying, quite frankly.

So there's a little snippet of the difficulties, but I do have another positive! Over the last few weeks, I have found a whole community of people out there online who are suffering through fibromyalgia, just like me. I am making friends and connections through Facebook and other social media outlets. This has been extremely helpful to me. Knowing that I am not alone is just  huge. And reading my very own thoughts in other people's Facebook posts has been affirming. I cannot believe I didn't search for these forums before. But, I am extremely grateful that I have them now! And, by opening up to people, I have learned that there are people that I actually know who have this illness as well. I am looking forward to learning a lot from people who have been going through it longer than I have.

That's all for today. No more energy, no more time. I hope you're all having a good week! 😉