A family's story

Posts tagged ‘ABA therapy’

Happy Dance

I got some of the best news today. After 6 months of back and forth with the HR representative at his company, Hubz got word that his insurance plan is being updated. The company is coming out of the stone ages, and will now cover ABA therapy for autistic children, regardless of age. That is correct. No age limits will be placed on ABA therapy. Hence, Tate will be able to continue to receive therapy after his 7th birthday next month–which was a huge burden of worry for all of us.

Hubz and I are not “squeaky wheel” types. We much prefer to mind our own business, put our heads down and get our jobs done. However, when the welfare of our child is in play, well, we find inner strength that neither of us knew existed. I guess our kids do bring out the best in us at times.

And…now that we know that he will have coverage of ABA therapy, we are thinking about changing ABA providers. I know…I know…we already have 18 months under our belts with the current provider. However, let’s just say that there are some huge gaps and frustrations (lack of communication with the director, absence of team meetings, gaps in hours requested, etc…) that are driving our thought process. It will be a pain. It will not be easy. But something tells me that there HAS to be a more comprehensive provider out there. There has to be. Also? It is very eye-opening when a current therapist comes to you and says that, off-the-record, she has an ethical dilemma with the way that your child’s therapy is being handled…and that she feels he is being short-changed in the therapy department. Yikes.

Hubz and I have some research to do, some decisions to make, and some butts to kick…but rest assured, we will do what we think is best for our kid. That much I can guarantee. Now, off to do some more of my dance of joy….truly feel like I’m walking on sunshine here. (Ironic, since it’s 20 degrees here today.)

Listen Up.

Yesterday day Tate’s therapist began a new program. It’s a listening program designed to help him discern various environmental sounds. Nate has auditory sensitivity. He also has the keenest hearing I have ever witnessed. Unfortunately, the fact that he can hear the slightest whir, whoosh, tick, and click can produce incredible amounts of anxiety and stress. His anxiety causes him to shut down and become unable to focus or process anything else around him.

The program is designed to help him discern and label sounds so that he can have less anxiety. Yesterday, the therapist started with 10 fairly common environmental sounds. Tate got 8 of 10 correct. He got 5 of 10 correct without any prompts. That’s pretty good. The plan is to introduce a few new sounds every few days to see if he can label them correctly and tolerate them.

Considering that one of the most common phrases out of Tate’s mouth is, “What’s that noise?”, I think this is a beneficial program for him. I hope he can tolerate it well. I did express my concern that he may start to shut down, even if he is able to label a sound. The therapist assured me that if they see him starting to shut down, they will end that program for the day. No one wants him to be in his unhappy place.

The first 10 sounds they went over were: wind, water, bird, toilet flush, telephone, TV, bell, knock, car, and dog barking. Most of these were ones that they knew Tate would know and would tolerate well without too much anxiety. There were pictures laid out and when he heard the noise, he had to point to the picture. He got bird, toilet flush, bell, water and dog barking all right without prompting. He got car, wind, and telephone with prompts. He could not figure out TV and knock.

The therapist said that knock is hard, but they’ll work on it. When they played the sound of a TV, which was the fuzzy “cable-is-out” noise and then what sounded like a tv show, Tate got confused. He said that the picture wasn’t there for it. So he KNEW it was a TV..but the picture of the TV that the therapist had was of an old TUBE TV. It was big, boxy, and had knobs on it. Tate kept telling her he did not hear the sound of the MICROWAVE anywhere!

Touche! The therapist said she had to mark it incorrect in the program, but that she knows that if she had an updated image, he would have likely gotten it with prompts. She made a note to replace the visual with a new image…because she had to concede that the old tube tv’s do kind of look like microwaves…all big and boxy and knobby.

Man, I love my kid….

Not without a Fight

This week the interwebz were abuzz with the whole DSM-V changes and autism hearings in DC. When media covers “the plight” of parents of special needs kids, they should focus on the insurance hullabaloo that we parents face. This frustrating, red-tape tango-ing, bureaucratic baloney that stresses us out. If we find something that works for our child, helps him or her succeed in life, why do they have to put a limit on it? A cap? This, this insurance baloney is the “burden” we have to deal with. This part of it is what makes parenting so damn hard. For as long as I can recall, there has been a rumbling, an effort, an objective out there, somewhere, for improved health insurance. Insurance reform is a hot topic. Currently, insurance coverage is a big deal in our house, as well.  Hubz carries some good coverage. We pay a lot for it, more than I think is necessary, but that’s another topic for another day. We’ve never really had to worry about a procedure, evaluation, or therapy not being covered. I know how blessed we are. Because of our plan, Tate’s therapies aren’t capped at “x visits per year”. Instead, we pay a slightly higher deductible and have slightly higher out of pocket maximums, but he is able to see his therapists regularly, and we never have to budget out the visits.

The plan has decent coverage of ABA therapy. We’re some of the lucky ones–I know some plans won’t cover it at all. ABA has been successful in helping Tate learn skills that he otherwise wouldn’t have learned. He has benefited from the one-on-one setting, at our home. He has breezed through several programs. He is mastering programs that we were weary about him being able to handle. He is moving mountains every day.

Getting ABA covered wasn’t easy. They made us jump through numerous hoops. I was on the phone several hours. Hubz was emailing and talking to HR representatives. At first we were denied coverage because the autism diagnosis hadn’t cleared. Then we were denied because the doctor didn’t write specific hours as a prescription. Then, it was denied because the plan stated therapy could only be delivered by a BCBA…not a behavior specialist (someone studying for their BCBA). Hubz got them to change the plan to include behavior specialists, because the reality is that BCBA’s are completely outnumbered. Then he was denied because it was a full moon. (I jest…I jest..) But, he was denied a few extra times…or the therapist was denied a few times due to some coding issue. Eventually, after several stressful days, weeks, months, we got Tate paired with an ABA therapy team. SUCCESS!!

However…however….the plan only covers ABA therapy until age 7. AGE SEVEN. Because, apparently, in health-insurance-land, where puppy dogs and rainbows rule, autistic children suddenly no longer have deficits in language, social skills, fine motor, gross motor, visual motor, and play skills once they hit age seven. For those who are counting, Tate turns the magical age of 7 in April 2013. We have 4 months of therapy left. FOUR FREAKING MONTHS. Hubz started emailing and leaving messages for HR reps back in October, at the 6 month mark. We’re trying to start the process for getting an exception. See,when we started out on the ABA journey, the HR rep that Hubz spoke to told him that the plan only covers to age 7, but individual exceptions can be made…and if our son was still progressing and benefiting from ABA, they could make an exception if we filled out the appropriate paperwork, and had his therapists and director of therapy fill out proper paperwork. And, I’m sure, his neuropsychologist. So, we’ve started the hoop jumping…again.

The original HR rep was no longer with the company. He got passed along to someone else…someone who when we started out trying to get ABA covered for Tate, passed Hubz around like a hot potato. This HR rep doesn’t answer emails. Doesn’t answer phone messages. It’s getting pretty ugly. Hubz has followed up twice now…to no avail. He is leaving one more email and one more message, letting the HR rep that the director will be involved ASAP. This is just ridiculous.

We fought too long and too hard to get Tate into ABA therapy. He has come so far…progressed in so many areas…developed skills that we were told were not likely…in just 18 months. Our son is amazing, nothing short of that. Ahhh-may-zing. He works his butt off. He is in therapy several hours a week to learn skills that come naturally to all of his NT peers. Yet, he doesn’t complain. He goes to every session. He fights it, at times, but he gets it done. And in getting it done, Tate has blossomed. He has functional speech. He is starting to play WITH people. He is starting to respond to non-immediate-family statements and questions. He is expressing feelings occasionally. His anxiety has decreased in some areas of his life.

It shouldn’t be this hard…keeping my son in a therapy that is helping him succeed. I am anxious. I am nervous that we’ll be told “no”. I am worried that he’ll regress. I am beside myself with guilt that we didn’t get him diagnosed earlier..and started in ABA at a younger age…But I can’t let that slow me down. I will channel all of the angst, anxiety, frustration and anger to fight with every. freaking. ounce I’ve got to at least say we didn’t go down without a good last stand. My son, my intelligent, witty, fun-loving son deserves no less. We will fight with all we’ve got to get our kid the help he needs, nay, deserves, in order to succeed in life.

 

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