Like there is a waiver that will help you pay for whatever your insurance doesn't cover.
- The waiver wait list is two years.
You can start OT and ST right away!
-Your insurance doesn't cover it.
You have been approved for assistance for ABA!
-The wait list is over a year to start therapy.
So, since I have no interest in waiting a year for ABA - I am going to start my own in home program for Finnigan. I will be blogging about that process since 1) this a journal about my family, and this is currently what my family is going through. Also, 2) I hope it will be able to help other families in the future know how and where to start when thinking about starting an in-home ABA program, since nationally a lack of access to either ABA and/or an inability to pay for it leaves families like mine in the gap.
First, I feel like I need to explain a few things to those of you that love and care about Finn. Everyone else should stop reading here, because this is going to get long. ;)
1. What is Autism?
Autism is a spectrum of developmental disorders that is characterized by global deficits across several fields of typical developmental functioning. Spectrum meaning it differs from child to child. ASD never looks the same in any two kids. Some kids are very reserved, lack energy, are non-verbal. Some kids are hyper-verbal, flap their hands and have very high energy. However, the following deficits must be present for an ASD diagnosis - prior to the age of three.
1) Impairments in language/communication
2) Impairments in social interaction
3) Repetitive/restricted behavior.
The first two are self explanatory. The last part (3) can be little confusing - but, as examples, it refers to Finn's repetitive hand flapping, pacing and humming and his need to always tear down a block tower because that is what he thinks is supposed to happen - no matter who is building it or where they are in the process - which gets us in trouble when we are in public playing with other kiddos.
2. What the heck is ABA?
ABA = Applied Behavioral Analysis.
Somebody recently unfriended me because I plan on doing ABA with Finn. She said that "better therapy tries to find out why a child is exhibiting a behavior, then helps them deal with the problem."
Well, actually, that is a pretty great definition of ABA! Haha. You analyze the behavior, then apply that analysis to the situation to help solve the problem. It's all in the name.
ABA is scientifically proven to be the MOST effective treatment for autism. Certain studies have shown that almost half of all kids that are allowed early access to ABA - for 30 hours a week for at least two years before age five - almost half of those kids can be successful in mainstream classes. It is the only treatment recommended by the surgeon general, and the American Academy of Pediatricians for treatment of autism. 40 years of research has, over and over again, proven it's efficacy.
As a nurse it's a pretty easy decision. I want what is evidence based practice for the best outcome for my child possible.
Most people that know anything of ABA only think of DTT: Discrete Trial Teaching. This is where the parent or the therapist offers an instruction, usually sitting down at a table, and the child either answers correctly, and is positively reinforced or answers incorrectly and is corrected.
IE. Flashcard of Robot. Child calls it a doll. Mom/Therapist states: good try. Try again. She may then give the child a hint, i.e., making an emphasized R sound. Kid says, "Robot!" Therapist says, "Grrreaat job!" and gives the child an exaggerated high five or hug.
This is what I was familiar with in reference to ABA as well; before I did my research. I was overwhelmed by the idea of sitting down at a table with my child 30 hours a day doing trial after trial. I want my kid to have a childhood, not just therapies!
However, in reality, this is SUCH a small portion of a good ABA program. Other parts of ABA include teaching in the child's natural environment. Mom sets up a situation where the child is having fun, playing, and is highly motivated to initiate speech, and then is immediately reinforced with desired object. For instance, child and mom are painting together. Mom has all the paints so child is forced to ask for "yellow paint," in order to acquire yellow paint. Asking for yellow paint is then immediately reinforced by both giving the child the paint, and also verbally telling them they did a great job requesting what they want. They are then more liable to request more things verbally, both because they realize they get fun things they want, and they get attention from mom for using words. This is therapeutic, but to the child it just feels like natural play.
Another portion of ABA is functional pretend play. Kids with autism don't learn to play with toys appropriate and socially with other children unless it is modeled for them correctly, and often. For instance provided with blocks, Finn will dump them on the floor and trample over them like they are balls in a ball pit. So every day I play trains with Finn and we practice pushing them around the track, and saying things like "chop-choo," "all aboard!" We take turns playing with the train so Finn is forced to wait his turn, and we try not to freak out and throw trains when the magnets don't hold the trains together and they become "broken." We haven't quite mastered that last one yet. =)
I will be collecting data which is important so that I can tell what I still need to work on, and what Finn has already mastered so that I do not waste my time on things he already knows, and I can quit interventions that are not benefiting him at all.
And another component to ABA is teach the skills that he needs to learn in many different environments, with many different teachers so that they can become more generalized. I am going to try to get my family to help with at least functional pretend play and Naturalistic behavioral teaching portions of my ABA program so that he can learn to generalize what he learns to outside just our home.
And, these are just a very small portion of what ABA consists of. I don't have time to go into it all, as this is already a pretty epically long post as it is, and I will explain more as I go along. It is varied because it is tailored to every kid and their learning styles and their learning needs. I am probably not smart enough to even attempt it, but I feel like I lack any real options. Like my hero Temple Grandin says, "the worse thing you can do for these kids, is to do nothing."
So how am I going to do it?
I have purchased online curriculum called Skills produced by the Center for Autism and Related Disorders that allowed me to answer questions to assess what Finn is developmentally delayed in compared to his typical peers and it gives me activity ideas on things I can do to help him learn those skills in the areas of academia, play, executive function, cognition, social, motor (Which isn't much of an issue for Finn =), language, and adaptive (functions of daily living like brushing teeth and using the potty. It's an affordable, monthly web-based subscription that I can discontinue if I need to once we get into a "real" ABA program.
I have also been watching videos of ABA therapists work with children so I can gain as many ideas as possible and see what techniques I like and do not like. These guys went to college for a masters degree in ABA and then passed boards, so I am not going to do as good of a job just by watching youtube videos, I am sure, but I am going do my best. One of the best resources has been a series of videos called "The A-word: Autism," where an ABA therapist works in home with a little boy for two years. The little boy reminds me a lot of Finn, and they have similar strengths, similar weakness (behavioral issues with frustration with communicating, problems with transitions, and an extreme like of being the person in control), so I have found those to be very helpful and will likely watch them many more times during this process.
I am keeping a log of all of the times that Finn has a freakout: bangs his head, throws things, bites himself, flops on the ground, and screams. A detailed log, which I then analyze to try to find out what is causing that behavior. I then teach him skills that he lacks due to his disorder to help him communicate his needs, or cope with the cause (antecedent) of that behavior.
THE ABCS of ABA: (A real life example).
Antecedent:
I present my child with a non-perferred food item. (which is most food items).
Behavior:
My child throws the plate across the room, screams, then throws himself on the ground.
Consequence:
My child has thrown the plate across the room so he is sent to his room without finishing the supper that is on the floor. (Thus gaining what he wants - not having to eat that food - through a bad behavior).
So I analyze that data and I notice that my child always throws his plate across the room when I present him with a non-perferred item. I surmise that the behavior stems from the fact that he lacks the ability to communicate that he does not wish to eat that food. Since I know the behavior stems from frustration from not being able to say no, I purposely spend the time and contrive situations to teach him how to say, "No," and then I reinforce that positive behavior (Saying no, as taught), by not pushing the food upon him and asking him what he wants to eat instead of the non-perferred item.
It's all about positively reinforcing the wanted behavior and ignoring the negative behavior (i.e. tantrums). I will always reinforce good behavior when I can, and will not punish my child unless I feel like I don't have any more creative options. IE, if he hurts his sister. He needs a time out in that instance, and a stern talking to because it's a safety issue. I don't want to punish him for how his autistic brain functions - since it is certainly not his fault.
Now eventually the hope is that my kid will have a less restricted diet, but currently I am focusing on teaching him how to communicate his needs so he doesn't feel like he needs to engage in improper behavior. So accommodations have to be, hopefully temporarily, made.
The same person that was upset with me for wanting to pursue behavioral therapy with my child was upset that I plan on treating my child like a dog. That made me extremely angry, but she wasn't being completely unfair.
My kid does not learn things spontaneously like other kids. He is bright, and he has already proven he can learn - and fast - but he doesn't learn many things spontaneously. He does not follow commands unless he is highly motivated to do so. However, I need my kid to be able to be compliant with commands. He is fast and extremely impulsive, and he almost walked off of a dock this summer into a lake and did not stop when I told him to. Luckily, I was close and he had a little leash/backpack on - so I was able to pull him up by the backpack before he actually fell into the water. But for safety - in the least - being able to follow commands is very important. There is traffic, and strangers, and the heads of other little kids and babies that my kid needs to learn to not stomp on when he is "stimming."
As my kid does not learn spontaneously I have to contrive situations that allow me to prompt him so he can learn what to do or say in those situations. For instance, I have been working on getting Finn to say "no," and other forms of "cessation mands." So I purposely offer him things I know he will be highly motivated to say no to. I offer him a bite of my soup. I sing loudly and off tune in his ear so he will tell me to "stop it." And, since he will NOT follow commands unless he is motivated to, I will temporarily have to provide him incentives to comply - until complying comes more natural to him and I can fade out the incentives. Kind of like a puppy, right?
- Another example: One of Finn's favorite activities is to blow bubbles. So, I purposely pause after he has popped all the bubbles to get him to look at me and request more bubbles. When he makes blowing sounds, instead of trying to use his words that he knows how to use - I ignore him until he says "more," or "bubbles," then I instantly reward him with more bubbles. Positively reinforcing his speech, prompting him to want to speak more to get more.
- Finn used to pull me by the hand to the kitchen to open the gate, point to the light for me to turn it on, then climb the ladder in the pantry and pull down what he wanted to eat and hand it to me to open it for him. I used to do these things for him automatically without thinking - however now I refuse to do these things for him unless he says, "open" for the gate, "light," for turning on the light and unless he verbally requests "cookie" if that is what he wants to eat. We have been working on this skill, called "Manding" since January and Finn's use of functional speech has probably quadrupled.
-We accomplish this by keeping highly preferred items out of reach so that he will be forced to request them: cookies, the iPhone, bananas, bubbles to name a few.
-The more words Finn knows the more speech he uses, and the more he learns to talk the more he will stop and look us in the eye for verbal praise and recognition of what he has just shown us that he knows, (a skill called joint attention that Finn naturally lacks see video below) and the more he looks us in the eye and talks with us the better he connects with us - and the happier he seems and the more tantrums decrease.
So yes, I do positively reinforce my son with an "thatta boy!" every time he looks me in the eye, follows a command, or uses a word. Just like a puppy. However, if I did not do these things my son, left to his own accord would spin, pace, and hum by himself all day, not look us in the eye, and tantrum violently because he did not get his way. Probably for the rest of his life. That sounds perhaps a little, dire - but it kind of is. I have this little window of opportunity while his brain is still young to teach him the skills that will allow him to have the greatest quality of life possible. And, as hard as it's going to be, and no matter what the peanut gallery thinks - I KNOW this is what is best for my kid. He wants so desperately to engage and be social, I know because he has loads of fun when I force him to, he just lacks the skills.
We do worry about my managing the line between therapist and Mom. I still want to be Finn's momma. Even though I have to get in 30 hours a week of therapy I still plan on taking him to the park, to playdates, to the zoo, music class, and swim class. We will still go on vacation and have a blast. It's just that my brain will constantly be working on how I can be working on skills with Finn. For instance, at play and learn we will be working on functional pretend play - a skill Finn does not naturally have. On play dates I will prompt Finn to interact, share and take turns with other kids. At the Zoo I will make Finn ask for a train ride instead of taking him automatically, when we read I pause now and look at him expectantly so he can finish the sentence for me, and ect. and so on. And 50 percent (at least) of therapy hours will be just me, talking with my kid, playing with my kid and reading to my kid. Things that we already would do - I am just doing it a whole lot more purposefully now.
So that is it. That is where I am starting. I am nervous to be my kids therapist for 30 hours a week, still take care of and bond with my newborn, work as an ER nurse full-time, somehow finish school so I did not waste my familiy's time and money for this past year, and keep a clean house and manage church and social obligations, i.e. maintain my friendships - which are very important to me.
Oh man is it going to be a journey.
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