New Sensory Plan...

This idea has been taking shape (in my mind anyway) for quite awhile.  It started when Nate's OT began coming out of their sessions and telling me about a new word here or there that he would say after some of the sensory activities they do in their work.  Particularly swinging.  I have wanted an OT swing FOREVER for the boys- they both find it very calming, but the back and forth kind that are outside are not adequate for what I am talking about (although as we can all attest, they are pretty calming too).

Here is a good explanation:
http://www.takeaswing.com/bos.html

Great, I want one.  Here is the one I have been wanting:
https://kidsdreamgym.com/products-page/autism-swing-hammocks/joki-hanging-crows-nest

OK, close to $200 with shipping- not horrible, but let's face it, I don't have that kind of money to be spending on a swing, and with the mats that would be needed under the swing, the hanging mechanism, etc, it would be much more. 

So I was sitting in the boys' OT waiting room yesterday talking to a dad, and he told me about this:

From Ikea, for 45 bucks.  Here is the description:  Swinging develops the sense of balance and body perception. It also brings a feeling of well-being and relaxation

How awesome is this?  Oh wait, so awesome that it's been discontinued.  Crappity crap. 

So this mama did what she does whenever she has a problem of this nature- I consulted craigslist.  Well low and behold, there was one listed in Virginia!  For $25!  It was an hour and a half drive each way, but frankly I was up for it considering the circumstances.  So I emailed the seller and after telling her about the boys and where we live, she offered to ship it to us!  And since she is another autism mom, I don't doubt her at all.  This is great news for the boys.

One more thing though....where to put it.  We don't have a large area in our home that we can dedicate to something like this.  I don't trust the boys to have something like this in their room and not try to yank it from the ceiling (call me crazy, ha).  So hanging this swing will involve daddy taking one for the team.  Daddy has a "man cave" in our garage, and well, for him to have this "cave" I have already sacrificed my garage parking spot, so I guess we are both giving here.  Today I casually "suggested" setting up a sensory/OT area in the front half of "my side", while his area would still be in the back half.  And he said OK!  Now it will involve some clean out of other kiddie items, etc, but I think this will be great!  No worries about locating a beam to hang the swing from since the rafters are already exposed.  We have a trampoline, and a tunnel, so really we just need to get some mats to lay out on the floor, and then go from there.  I have lots of cheapy ideas and I think I can make this into a great, calming area for both boys.  I am totally psyched!

And just another little shout out to Ikea and their sensory friendly kids' items.  Look at this stuff:

Now I think that the rings and flat swing are also discontinued (think ebay), but the "egg chair" is not.  The thing spins, and the canopy pulls all the way down in front to make a little "cave" for the child to be in.  The dad at OT said they are probably getting rid of theirs and will give it to us.  I just can't believe that a Swedish furniture company could have such insight!  Or is it that the rest of the world is already in on the secret that there are many kids with major sensory needs?  Either way, I am excited to get started on this next little project.

Added Benefits? Really?

Sigh.  Mommy is annoyed, really, really annoyed. 

Last weekend when we were at the conference, I visited a booth for a private ABA provider- their flyer said that they accepted Cigna.  We have Cigna!  Goody!  I was talking "insurance talk" with the representative and she said that although they have a contract with Cigna, they have never had a client successfully get services with this insurance.  Well, I am an insurance case manager right?  So I thought I would at least explore.

The first thing I checked was the state law.  Discouraging fact #1- Maryland has no mandate for insurance companies to provide autistic children with ABA (applied behavioral analysis therapy).  It has gone before the legislative session multiple times and never passed.  Let me explain why this is a travesty.  The medical community at large still does not acknowledge autism as a medical problem.  It is considered strictly behavioral.  Therefore, the ONLY therapy that said community recognizes as legitimate for autism treatment is ABA.  This is why OT has to be billed as developmental delay and not autism.  OT would not be covered for autism.  And speech has to be billed as speech delay, not autism.  None of these services are covered for autism.  A neurology consult similarly would be billed as some type of neurological deficit, but not autism.  The insurance would not pay if it was billed as autism.  So to discover that the one widely accepted therapy for autism is not mandated in our state made me, well, really really pissed.

OK, well we have private insurance, right?  It doesn't have to be mandated for them to cover it.  So I called the ABA company and asked for the CPT codes they use for ABA, then called our insurance company.  No one knew what ABA was- awesome.  I realized that this was because I hadn't selected behavioral health.  Mainly because I KNOW that autism is not just a behavioral problem- it's roots are deeply based in medical issues.  Oh well, so I called back and asked for behavioral.  When I asked about ABA, the representative asked, are you worried that your child might have autism?  I kind of laughed and said no, my child does have autism.  She gasped and said, don't you have an autism case manager?  Ha.  She further stated that I NEED a case manager for my son because there are "additional benefits" for children with autism.  Well this is news to me, because when I do a provider search on the behavioral website and enter "autism" as the speciality, big blinking letters pop up and warn me that "this service may not be covered for the diagnosis of autism."  Which, frankly, is why the insurance company has not been aware of my kids' autism.  We don't need any added challenges.  Anyway, the rep said she was going to assign us to a case manager and "expedite" it.  I guess that's what you get when they know you're a case manager too.

OK, so I got sucked in.  Maybe they ARE going to help.  I mean, they don't have autism case managers sitting there to do nothing do they??  So I was happy to hear from Holly today.  Until she said that ABA is not a covered benefit for the Cigna plans in our state because it is not "mandated".  Funny, because if medical necessity is shown it is covered by MEDICAID which, I pay for.  But not by my private insurance, which incidentally I also pay for.  She went on to tell me that our family qualifies for psychotherapy- extra sessions, due to our children's conditions.  Jackpot baby!!  Not.  I laughed and said, funny, because my therapist informed me last night that my visits are being audited.  I guess I have been seeing a therapist TOO regularly?  I told my therapist that I would be glad to "turn on the crazy" if needed, or explain to them that this process has taken "a bit longer" due to both of my sons both being diagnosed with autism and our first "therapist" (who was "in network" by the way) losing his license due to misconduct in the middle of our "work". So I'm awful sorry for the delay.  If only I had known that having autistic children means I get to talk to someone MORE I would have come forward with this long ago.

Sorry for the bitter tangent, but wait, I'm not done!  I go to look up the "forbidden" autism specializing therapists, knowing that they are no longer off limits, and lo and behold, there are about 10 ABA therapist on the freaking list!  So I gave Holly a jangle and said, ummm, what the heck is this?  She explained that even though they are theoretically "in network"  we can not use them because we don't have the benefit.  Ummm....doesn't that make them "out of" my network???  So now I plan to search for an ABA therapist who also happens to be LCSW or an liscensed psychologist.  But after the experience that John and I had last year, I am very weary of allowing my children to have therapy.  I just don't trust therapists in general after that.  We have been very fortunate to have the person we are currently working with, but that came only after a wretched experience with someone that did way more harm then good.  I think I will insist on being in the room IF I take them to a non-ABA or covert ABA therapist. 

Well that's an hour of my life that I'll never get back.

A Whole New Ball Game

Just when you thought you were safe....

Haha, well I won't go that far.  What I mean is that I was feeling kind of like I was aware of all of the "areas" I need to pay attention to.  The boys' educational needs, IEP's, medical needs, supplements, infections, therapies, various activities, meetings, etc. 

Not so fast.  A new area has presented itself.  And it's a huge blessing- or will be.  Right now, it's more work.  I have been able to explore a bit more lately in the world of autism.  And it is a whole other world, where parents become biochemistry experts, IEP advocates, and therapy providers.  And apparently, we also become grant applicants. 

So this is great news right?  There are grants available for autism families!  And as always, I have no freaking idea what I am doing!  So I have been picking the brains of our local TACA chapter leaders, Cisco, the special educator who runs the Cisco Center, and this evening I sat down and wrote, and wrote and wrote.  Next step is to beg for letters of medical necessity and invoices for the services I am requesting.

The upside?  MAYBE I will be able to send both boys to the Cisco Center for the summer if these various grants come through.  Or at least for part of the summer.  Nathan has an extended school year, and will thus be at his ECI program for the month of July.  And I plan on sending Jack to the local county camp for the month of July.  But in June and August, maybe, just maybe, I can send them both full-time.  And Nate can continue in the afternoons during July too.  Keep your fingers crossed that mama does this correctly!  What a huge relief this would be!

Decisions, Decisions

As parents, we all want to provide for our children.  As good parents, we want to offer opportunities for growth and development outside the necessities.  But where is that line?  What is a necessity and what is an enrichment activity?  It's a tough call.  We live in a pretty upper middle class area where you feel even more pressure as a parent to have your child enrolled in multiple extracurricular activities in order to offer them a level playing field to that of their peers.

Add Autism to the mix and that line between enrichment and necessity becomes even more blurred.  There have been many different types of therapies researched for kids on the spectrum that have been found to be beneficial.  There's no way I can list them all, but here are a few:  equine therapy, aquatic therapy, vision therapy, occupational therapy, speech therapy, social skills groups, special needs sports.  The pressure on an autism parent increases because like all potential therapies for our kids, we feel a desperate drive to provide these things.  What if one of these activities really helps one of our children to make a breakthrough? 

So of course I want my kids involved in all of this.  Never gonna happen.  The boys are both in OT, which is mostly covered by insurance, but just to give you an idea, that alone (and this is just copays) comes out to $45 a week.  OK.  So swim lessons, not so bad, right?  WRONG.  For a special needs child, lessons range from $40-50 for each lesson. I have checked with all 4 local special needs options.  Equine therapy, about the same.  The boys could have speech covered by insurance, but with our insurance, they may have 60 sessions each year a piece and this encompasses speech, occupational, and physical therapy.  How on earth does that make sense?  Oh, I see your child has greater deficits than the child who only requires OT once a week.  I see your child needs both OT and speech.  OK, they can have both, but they can only go to each twice a month.  Now how is the child with greater needs going to make progress given this set of circumstances? 

Now, add to this....wait for it...two kids who could benefit from all of this.  Can someone explain to me how on earth I am to provide these opportunities for my children?  Because you see, they already require daycare, special needs daycare and guess what?  You got it- because they have special needs, it's more expensive.

When is someone going to give our families a break?  I know that our children have special needs.  I know that teaching them requires giving more of one's self.  Believe you me, I know.  Thing is, my work didn't start paying me more in order to assist me in taking care of my special needs kids, last time I checked there isn't a larger tax deduction for a child on the spectrum, and I'm pretty sure that no one has set up a trust fund for either one of my kids without telling me.  So HOW am I supposed to choose which child gets what?  Which child needs these things more?  If I won the lottery, I would be giving money to every autism family I could find.  I would be setting up a "therapy fund" for other kids with autism.  It continues to sicken me that on diagnosis, when I asked what I could do for my child, the doctor replied "how much money do you have?"

Sickens me.