Routine? What Routine? When Nothing Stays the Same

Lately I feel like I have been doing a crappy job at many different things.  I think all mommies feel this way at times.  It’s inevitable- how many hats can one person wear?  Forget about wearing them well. Just getting the basics done is overwhelming lately.  It doesn’t help that all of our routines seem be to flying out the window…

The past few weeks have been extremely complicated for this working mommy (and many other mommies too).  The boys have not had one “normal” day in the last two weeks.  This week school is two half days, two days off, and then finally Friday I thought would actually be typical but then I came to find out that it’s the last Friday of the month, and Nate’s center is closed in the afternoon.  Today the kids went to Cisco Center for the day, thank God, so I had just my job to do during business hours.  But every other day, they have been here.  I have been caring for them for part of the day while working, every day for the past two weeks.  This is insane when your job is telephonic.  Not only am I under tremendous pressure to get my job done, but I feel as though I am plopping my boys in front of the t.v. and praying they will keep quiet.  Bad mommy.  On top of that, all of the housework that I usually get done during my lunch break, etc., has gone out the window.  So the house is a mess.  Which stresses me out beyond belief. 

Jack has been off of memantine for several weeks now, and I think it has affected his sleep.  It is soooo much worse right now- it seems like every other night he is up for hours.  It started at 2:30 am yesterday morning.  At least every 20 minutes until, well, until my mom got here at 9 to help so I could get my calls in for work (I am required to make 30 outreach calls to my patients each day- try accomplishing that with my little aspie under foot).  He wakes Nate up during this process too.  And both boys really seem to like climbing on me, especially in the middle of the night.  I am freaking tired.

Nate is sliding backward a bit.  Less repetition, fewer words.  Although he is also messing with me- he keeps laughing and shaking his head no when I ask him to say something.  And if I push him hard enough, he does it, but we are talking five minutes to get one word out of him.  Much more pointing and “in there, in there, in there” where I am pulling everything out of the cabinet trying to find what he wants.  This is so frustrating.

I am thinking of some new interventions for the boys.  Reading a new book.  Thinking.  I have my mom reading the same book so she can tell me if I’m crazy.  I need a check person.  My next step is to remove soy from Nate’s diet.   Two of his go-to foods have soy in them.  This may not sound like a huge deal, but with a picky palate like Nate’s, rest assured, it is.  But it can’t be worse than removing dairy- that boy was addicted to milk- he was like a junkie looking for a fix for the first week we eliminated dairy.  If we can handle that, this should be easy by comparison.

We are also losing both of the boys’ private OT’s- they are both moving.  I actually think this is harder on me than it is on them- as a parent, especially when your child cannot tell you what goes on, you put an enormous amount of trust in these practitioners.  Especially because they are pushing your kids and urging them to do things that are uncomfortable at times.  Nate’s OT in particular has been with him since “the beginning”.  I don’t think he had even been officially diagnosed when they started working together.  He can say her name.  And just to show how significant that accomplishment is- her name is Amanda.  Not exactly simple.  Nate is also finally having his private speech evaluation next week.  I am totally psyched for this- I put it off for quite a long time, then we were on a waiting list for months.  Before this fall, he wasn’t ready.  His sensory issues were the primary focus- he couldn’t attend long enough to do anything productive in speech.  He can now J.  I am going to be picking him up from Cisco Center during my lunch hour, running him to speech (which is about 5 minutes away), and then bringing him back when he is done- that’s bound to cause some meltdowns.  Unfortunately, this is the only nearby practice our insurance will cover, and it’s the only time they have available, so we will just have to make it work.

Onward!  Right??  Maybe, just maybe, everyone will sleep tonight.  We are DUE for a break in that department.

Habilitative Services In Maryland for Kids with Autism- A Must Read!!!!

Wow.  Seriously for a while today that was all I could say. 

My project for the next few weeks is to figure out our insurance for next year.  I have been considering enrolling the boys in dual coverage (both the insurance from my work and the insurance from John’s) in order to have more allowed services, but mainly to have more therapy sessions.  Right now, as I have mentioned in the past, the rehab services dictate that each individual is limited to 60 visits for OT/PT/speech combined, which is woefully inadequate for both of them but for particularly for Nate who is in desperate need of speech therapy.

John’s work sends out a written bulletin detailing the medical plan options.  I was perusing the choices and immediately focused on the rehab benefits.  The most expensive plan offered 100 visits total which would not allow Nate to have both speech and OT once a week for the year- was getting pretty upset about this because my insurance premiums and deductibles are much much higher than John’s (and yes I work for a health insurance company).  Then I noticed something new.  Maybe I’m nuts, but never before have I seen a column for “habilitative services”  under the column for rehabilitation services. 

Here is the definition of habilitative services:

“Habilitation Services - Health care services that help a person keep, learn or improve skills and functioning for daily living. Examples include therapy for a child who isn’t walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

Here is what that column said:

Habilitative Services for Children Under Age 19

(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)

Calendar Year Maximum:

Unlimited

This benefit language is enough to make an autism mom’s heart start pounding.  What IS this?????  I want it!!!!  I emailed John right away and asked him to talk to his HR department.  But I wasn’t hearing back soon enough, so I googled my husband’s work, insurance, and habilitative services.  And that’s when I saw it.

An update to our current policy for 2013.  An update stating that effective May 1^st, 2013 habilitative services are covered for the above diagnoses with an unlimited calendar year maximum.  And the policy was made retroactive to January 1^st, 2013.  Basically this is saying that my kids can have two OT visits a week if they need them AND speech therapy every week.  Obviously I snorted something this morning and forgot about it.  So I called Cigna and read this to a member services representative, who stated that she did not see this under our benefits.  Sigh, maybe I was reading it wrong.  Damn it- I really liked lala land.  And then, the manager comes on the phone and asks ME if I can fax HER a copy of this policy.  Hell to the yes!!!  So I did.  I haven’t heard back from her yet. 

But I did hear back from John- the HR rep was not aware of this policy change either- but she looked it up and…..it’s true!!!!  I called the boys’ OT right away to let her know- she wanted to see the document too- she said they had only ever had one other client who had a habilitative services benefit and they had to submit a special application, yada yada.  So I emailed it to her.  She instructed me to get letters for the boys from their pediatrician stating that they have been diagnosed with autism spectrum disorder, so that they can bill under this service from now on.  Did you hear that???  The insurance company is going to cover something BECAUSE my kids have autism.  We don’t have to say “developmental delay” anymore.  So I called for the letters…and now, we should be all set.

But I was curious.  Why this wonderful, amazing, life changing shift???  So I did some research and found out the why.

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-weighs-maryland-insurance-reform-plan

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

Autism Insurance in Maryland

Maryland has a Habilitative Services mandate. Habilitative Services include, but are not limited to, Physical Therapy, Occupational Therapy, and Speech for the treatment of a child with a congenital or genetic birth defect (including Autism Spectrum Disorder).  When the mandate was written in the late 1990s, it was the intent that services, such as Applied Behavior Analysis (ABA), would be covered by the language …but not limited to…that was included in the law. In practice, this has not been the case. Legislation was passed by the General Assembly in 2012 to clarify what services are covered and to address service access issues with the mandate. The legislation called for the creation of two workgroups: an Autism Technical Advisory Group (ATAG) and the Habilitative Services Workgroup (HSW).

The ATAG was composed of individuals with expertise in the treatment of Autism Spectrum Disorders (ASD) and was charged with determining the medically necessary and appropriate use of habilitative services for the treatment of Autism. The ATAG submitted their recommendations in April 2013. The recommendations are now entering the regulatory process with the HOPE that come November 1, 2013, ABA will be covered under the mandate. Read ATAG recommendations.

The HSW is charged with determining: if children who are entitled to habilitative services are receiving these benefits; if those children are not receiving the services, the reasons why; ways to promote optimum use of these services; and the costs and benefits associated with expanding habilitative services coverage to individuals under the age of 26 years. Their work is still underway. Read HSW Interim report. 

Only plans subject to Maryland Law are subject to the Maryland Habilitative Services mandate. About one third of Maryland residents’ health plans are regulated by Maryland law. However, residents covered by plans sold in other states or self-funded plans may offer coverage for Habilitative Services and/or Autism treatment.
Habilitative Services information from the Maryland Insurance Administration

So the regulation has been there it appears- but now it’s being enforced.  And God willing expanded upon come November 1^st! 

http://www.mdinsurance.state.md.us/sa/docs/documents/news-center/legislative-information/042513_atag_recommendations_final.pdf

I wanted to make sure I posted about this and quickly.  Because it’s open enrollment season.  Because everyone in Maryland who is effected by autism needs to ask this question before enrolling in a new plan or even staying with the same one.  This benefit was never an option for us in the past and suddenly my husband’s employer is providing it with all of the health plans they offer.  It can happen to you too!  Do a little research!  What awesome news!!! 

O is for Obstinate- And It's Mommy's Middle Name

Nathan.

So we ALL want him to talk right?  I know that any type of communication is a positive thing, especially at this point, but I selfishly continue to want this communication to be speech.  I am picky. 

I received an email yesterday from Nate’s speech therapist at school that really upset me.  I don’t think that it technically “should” have, but as our marriage counselor says, there’s really no reason to “should” all over myself, I feel what I feel.  Anyway, it was a fairly routine correspondence, Nate’s next set of evaluations and IEP meeting are coming up (oh goody) and she was requesting permission to have an “assistive technology” evaluation done.  Basically, the school would provide him, if it is determined to be necessary, with a type of computer device to assist with communication.  I know that for many people this type of assistance doesn’t just “fall into their laps” like this.  Although truly we have done a ton of work to get to this point.  I should be and am grateful for all of the help we receive.  I will take anything they are willing to give him; I try to keep in mind that it is much easier to keep services that are given when a child is small than it is to obtain them as the child gets older.  Jack is a prime example of that. 

So what the heck is my problem?  This email made me cry.  Well duh, it’s just another “step”.  Another step towards accepting that Nate may not talk.  Now, in my response to the speech therapist, I broached the subject of still working on actual speech and she stated that using this device in no way means that they/we will not keep working on speech, and that this would hopefully actually be a bridge to him speaking.  But I know.  He has little “friends” with autism, the same age and older.  They are not whipping this device out for them.  Just my Nate.  And I refuse to accept it.  Not the device itself but the possibility of no speech.  I think that I will likely consult the advocate we used with Jack last year, who is wonderful, not because I think that Nate is being denied services that he needs, but because I want to make sure all of the bases are covered.  It’s worth the small investment to have that peace of mind. 

This revelation has kicked me into high gear.  Maybe I needed it, who knows.  I feel like I am working hard, but there is always something I’m forgetting.  For the past two years I have wanted Nathan in private speech therapy.  We have been unable to do it; our insurance covers 60 visits a year of PT/OT and speech combined, and I have chosen to make his severe sensory issues the priority as I really do think that they interfere with his ability to do the work that speech therapy requires.  He is just too distracted.  But enough.  I am tired of allowing these restrictions drive my son’s therapies; he is not getting all that he needs.  And I plan to change that.

I am calling a private speech therapist in the morning.  I am getting an evaluation.  We should have enough visits left after his once a week OT visits to cover at least two months of speech this year, and we will have to make that work.  In terms of next year, I am looking into enrolling the boys in both my and John’s insurance plans so they have dual coverage.  I have never used my benefits because of the sky high deductible, but if there is dual coverage, the other plan will take care of that.  And my coverage, I discovered today, allows for 60 OT/PT visits per year AND 60 speech visits per year.  That would be just wonderful, but I still have to figure out the monthly costs once our open enrollment information for next year is available.  But at least I have a plan, and that feels good. 

This boy will talk, I know he wants to and I KNOW that he can.

What I Learned in Kindergarten

I haven't really written about the end of the school year for Jack, or expressed my thoughts about the over all experience this year so I thought I would take a few minutes to do that.

I sat down this evening and really went through everything the teacher sent home with Jack on his last day of school- you know everything they can find that has his name on it- locker label, book marks, pencils, all that good stuff.  Except I found what I consider to be a treasure.  The results of Jack's Assistive Technology Evaluation.

The evaluation states that Jack needs an AT device- in the form of supplementary aids, services, program modifications and supports.  He is to have daily keyboarding practice, he will be provided something call Pixwriter software which utilizes pictures to develop written work, and it will be made available for home use as well for homework as needed.  The school is to ensure that Jack has computer access in all classroom settings; he will be provided with worksheets in a digital format as needed so he can type his answers.

Well then, that's just AWESOME!!!!  Another school victory.

In my first "big kid" IEP meeting at the end of pre-K last year, I was quite overwhelmed.  Many people were talking "at" me and telling me "what my son needed".  And it wasn't much- it made me really nervous.  For his severe fine motor deficits he would have a pencil grip?  a slant board?  a lunch buddy?  That hardly seemed adequate.  The time with the special educator seemed very limited, OT assistance as well.  And no aid.  But in my eyes, at that point, these were the experts on what my child needed in school, so I accepted their "recommendations" and we moved on to kindergarten.

Man was I wrong.  Man were THEY wrong. 

It's often said that as a mom you are the expert on your child.  And of course this is true, there is no other human on earth who knows your child as well as you do.  I have fully accepted that for quite awhile now.  However, when we transitioned to the school setting, I guess I felt like the teachers would be the experts on my child in this arena, they are the ones watching him learn at school and seeing the areas in which he struggles.  I still believe this to be so to a certain extent- Jack's teacher this past year was certainly very aware and communicative regarding his struggles.   What I learned though, is that unfortunately, in the school's eyes, the only people who can really stand up and argue that "hey this isn't enough for my son" are his parents.  Jack's teacher could tell everyone and their brother that Jack needed more help, but until it came from me (and the advocate), nothing changed.  I believe this is also a legal issue, goodness knows I had to sign a consent every time they evaluated Jack for anything, but it makes me sad that the teacher who is with my son in this setting every single day is not given the power to advocate for what they believe him to need.  Or at least, they don't get results.  I hate to say it, but it's also a money issue- with limited funding for special education, the parent really has to shove their foot in the door and refuse to move it until the appropriate changes are made.  I was shocked the first time the advocate we worked with said to the administrators something like "just to be sure, you do have adequate documentation to get funding for additional support for Jack right?"  That's why I was getting letters from his OT, pediatrician and developmental pediatrician recommending interventions.  Not because the school didn't already know what he needed, but because the people who dole out the funding needed "documentation".  There is a fundamental problem here- shouldn't the educators' recommendations be trusted?  Isn't that why they are there?  Because they are able to assess these things?  Apparently not.

To many of you who have children older than mine, this is likely old hat.  However I have made several friends and have plenty of readers who have much younger children with autism.  To you I say this- learn from my mistakes and misconceptions.  In every area of life YOU are the expert on your child.  Even if you believe that your child's teacher knows what his best for him/her, YOU have to ask for it.  Demand it.  Because it is not just what your child deserves, it is their RIGHT. 

Had I let things remain at the status quo for Jack this year, he would be having an hour of special education a week, which was actually time with an aid, not the educator.   He would not be in speech.  He would not have been evaluated by the alternative technology team.  I do believe that through his updated evaluations, he would have received further aid support, reading assistance, and math accommodations.  That being said, they weren't even planning on doing either the speech or assistive technology evaluations.  But because I requested this, and made a good case for each, Jack now has speech twice a week, and is going to be provided with technology that will assist him in generating his own work instead of relying on a scribe and hoping his handwriting becomes legible, someday.  I mean, he's been in OT since he was 3- the bottom line is that he's not ready to write.  You can't force that, you just can't.

I am not trying to toot my own horn, I am by no means an IEP expert.  I do believe that I am an experienced autism mom at this point though and I want to empower other autism parents who are struggling or just starting on this journey.  Sometimes I can't believe how far we have come this year.  When Jack starts first grade, the school will be well prepared for his needs, and I will feel confident that all issues are being adequately addressed.  Not half bad for a year's work!!

That New Swing Smell

You can give Jack credit for this very umm, creative title. 

John and I dug in today and worked on the OT space we have been planning for the boys.  The swing I bought on craigslist literally came over night, we already have a trampoline and a sand and water table to put beans in.  Today I found a gym mat for $25 on craigslist.  I will probably want a second one at some point, but it's a great start.

First we had to clear out the front of the garage, which was a MESS.  This took about an hour and a half.  Then I went over to the kids' private OT office and inspected their swing set-up.  Between that and some very excellent pictures of a swivel hook by Meghan Gallagher Houder, we were in business.  Brave woman that I am, I went to the hardware store and found all of the stuff- bought the 300lb load bearing variety.  I know the boys are tiny but the swing is moving and gravity is at play, so I didn't want to take any chances. 

And voila, now we are cooking with gas.

The only downside was that the boys were fighting over the swing this afternoon.  Which is a good downside I suppose.  The trampoline had been buried in the garage for awhile- Nathan went right over to it and had a blast working on his jumping.  Even though he does this every week at OT, he previously hated the trampoline at our house.  He would pretty much climb under it and lie there looking at the netting.  If I tried to put him on it he would scream.  So that's progress for sure.

As for the "new swing smell"?  Here you go.....



Where this came from we have no idea!  It's not even a quote unless someone has been showing him secret new swing smell videos?  Yeah, no.  

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.

An Awesome 6th Birthday

My boy.  Jack did absolutely fabulously today.  It was the best birthday I can remember for one of the boys in a long time, maybe ever.  It was the first time for several things- first time Jack basically "created" his own guest list, and the first time we had a party away from home.  Best. thing. ever.  Instead of running around like a fool cleaning the house last night, I was wrapping gifts.  Instead of decorating all morning, I had a nice snuggle with the birthday boy and watched him unwrap gifts.  Awesome. 

As always, I tried to keep Jack's party pretty small.  New strategy this year and it did not work :).  We had his party on the Eastern Shore in Maryland, about 45 minutes from home, at a horse farm.  I let him invite the kids from class that he wanted to come, figuring maybe two or three of them would make the trip, then our family friends.  One kid RSVP'd no- we had close to 20 kids there today including siblings.  I was slightly worried for Jack, but we were outside the whole time and there really was no noise factor to overwhelm him.  And he had an easy exit if he needed a break.

This farm- it's incredible.  It is called Dominic's Farm in Queenstown, MD and it has several very special aspects to it. 

http://www.dominicsfarm.com/

Dominic is the name of the owners' son.  He has autism and is grown.  He still comes home and mows the lawns every weekend.  As a result, the owner, who runs the parties, is incredibly sensitive to the needs of kids on the spectrum and adjusts things accordingly.  For instance, she had us come out a few weeks ago and spent about an hour taking us around, introducing Jack to the animals.  And he remembered every single name- has been talking about riding on Zach ever since (horse).  She keeps the "structure" very flexible.  And because it's such an open area, any type of behavioral issues from either boy are much less glaring.  Nathan ran around shaking a rope for a good 20 minutes and stimming, and I don't think anyone noticed.  Although to be honest, I really just didn't care as long as he was happy. 

This is Jack sitting beautifully listening to Miss Kathy talk about being careful around the animals.

Jack and Sean watching Angry birds while waiting to ride

Mommy's proudest moments today:
- Jack handled letting other kids ride the horse like a champ- no meltdowns at all. 
- Jack decided he did not want the birthday song and with the help of his OT made it very well known- he usually cries at the end of the song, all of the clapping really bothers him, and he recognized this and avoided it. 

Most special moment- I was walking to the fields with the boys, holding Nate's hand, and Jack was walking next to us.  One minute I looked down and Jack was holding Nate's other hand.  I cannot stress enough what a big deal this was.  This has never ever happened before, it was such a wonderful sign of affection and it still brings tears to my eyes.

I am proud of myself.  I realized as I sat down to write this today that I was more at ease with the boys and their behaviors today than I have ever been.  I did not offer one explanation for either of their actions.  Now, they were both very very good, but as I said, Nate was shaking rope and running laps for a good part of the party.  Jack's anxiety was very obvious at times and I am sure that some people wondered why he opted out of the birthday song.  I felt no need to explain.  I don't think I uttered the word autism all day, except when talking to the owner of the farm about treatment options before the party.  This is a huge first for ME. 

Hilary Clinton said it takes a village to raise a child.  That's one child, and I assume this child is not on the spectrum.  It takes a lot more than that to raise two children on the spectrum.  And damn, we have built one Hell of a village over the last several years!  I looked around today and behind the kids and parents from Jack's class saw some of the most caring supportive people I have ever known.  My mom and dad, my little sister, John's brother, some of my very best friends- Joann and Helen and their families, another special needs family we have connected with who understands our life like no one else ever could, a family from the boys' OT practice.  Preschool friends who Jack actually connected with back then- which was huge back then.  Jack's OT made the trip to see him- she has been working with him for three years now and has earned that gorgeous Jack smile-  not the regular cute smile, but the one reserved for people he really loves.  We missed Jack's mimi, one of his most favorite people, very very much.  She has been an invaluable support to our family during our "rebuilding" process, and Jack just LOVES her.  But we will see her tomorrow.  All of these people are here for the boys, here for our family, and their presence made Jack, and frankly me and John feel secure enough to really let our guard down and have a great time.  I know that Jack will never forget this experience- and all John and I could do for most of the party was grin at each other like idiots, because we knew we kicked some serious butt on the party front today and our little boy was thrilled.

OT Shenanigans

Thought I would share some really fun videos of the boys' progress in OT.  Jack has been with the same OT for close to 3 years now, and I will be sitting in the waiting room and "bing" I will get a video of one of the boys doing something awesome.  I used to go back to watch when it was just Jack, but Natey gets really really mad if I come back to watch something and then leave again.  Thus the videos.  Which is really preferred, b/c I can watch them over and over again!
First Jack....

seat drops on the trampoline!

"hanging" out- this is a HUGE improvement in strength for him

And last but not least, Natey and the zip line



I want OT!!  Trampoline?  Zip line?  It's like Rolly Pollies!  Except it really is very challenging for these guys, and I have seen both of them make tremendous progress.  They both tolerate so much more movement than they used to, and both have great improvement in strength.  The sensory benefits are also huge.  Enjoy!

Trust Your Inner Voice Mamas

I have mentioned before that I felt something was "off" with Jack from a very early age.  That I was poo poo'd, even laughed at for expressing this.  First time moms are not taken seriously sometimes.  But here's the thing- these kiddos have only one mama- and that mama pays more attention to every movement, expression, and achievement that child makes than any other single person on this earth.  First time mom's may not "know" that much about parenting, not technically, but the instincts are there, the gut feelings are there.

I wish someone had told me that when I was embarking upon motherhood, and a person or two may have even said something along those lines, so most of all, I guess I wish I had trusted myself enough to follow my instincts.  I mean, Jack started receiving early intervention at age 3- that's pretty early.  But by Nate- well he started at 18 months.  Granted he wasn't trying to speak, but still.

My rambling really does have a purpose.  Something I have long observed in Jack is that one of his eyes doesn't seem to focus, or track as well as the other.  I have mentioned it to several practitioners and friends/family over the years, and no one else seemed concerned, not the pediatrician or his therapists.  So I kind of let it go, because, once again, I'm just the mom right?  About 3 weeks ago, the head of his private OT program worked with him for several sessions because Miss Sam was sick- she mentioned to me that she noticed some issues with visual tracking, and of course perception (which is also a sensory processing issue).  She even mentioned that she noticed what looked like a "lazy eye".  I made note of it and planned to contact an opthamologist, but hadn't done so yet.

I had the OT portion of Jack's IEP meeting today as the OT cannot attend on Thursday.   It turned out to be a really really positive thing- mainly because we were one on one and more information was shared in both directions because of this.  Ironically, Jack's school OT is now working Saturdays at Jack's private OT practice, so he now runs into her there as well.  This is awesome because she is able to observe what Miss Sam does with him first hand, and she has been working with him since he was about 3 and can get him to do just about anything.  So we were discussing the assessment results, which on the OT front are pretty dismal- difficulty with prewriting strokes, many many sensory sensitivities, inability to attend, to interact appropriately and work with peers, just to name a few areas.  Then she mentioned that he seems to have the most difficulty with drawing diagonal lines, and that he doesn't seem to track very well with his eyes. That it's like his visual fields are off.

That made two people in the last month who FINALLY noticed something I have been concerned about.  My mom was at our house today and I mentioned the eye issue to her- her response?  "The right one??"  Sheesh!  Now I am freaking out, I should have intervened long ago.  What if his vision is causing some of his sensory issues?  What if he is having trouble writing because things are distorted?  I feel terrible.  So needless to say, we have an appointment with a pediatric opthamologist from Wilmer Eye Institute at Hopkins next week.  We need to get to the bottom of this. 
If this issue truly exists, it could be mainly two things:
amblyopia
http://en.wikipedia.org/wiki/Amblyopia


nystagmus
http://nystagmus.org/new/aboutn.php

Right now I think amblyopia (strabismic) sounds more likely.  Either way, we'll get it figured out.  And we can adjust his interventions appropriately. 

The lesson to be learned- always be the freaky mama who questions everything!  What's the worst that can happen?  You're wrong and look like a moron?  Who isn't willing to look like a moron for their kid?  I sure am, and have on many many occasions! 

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. 

Frequent Flyer

Believe it or not, this is not about Jack and airplanes.  Well, it kind of is, since everything is about Jack and airplanes, ha. 

I went in to Jack's school AGAIN today, for another IEP session.  Before I get into that I will say that I volunteered in Jack's classroom yesterday and for once found it to be a fairly pleasant experience.  He had the special educator with him for "workshop" time (which is what I was there for) and she was fantastic with him.  If you are able to keep Jack somewhat on task when mommy is visiting you're doing pretty well.  I was playing a reading game with the kids and she even helped me a bit when a couple of unruly kiddos weren't doing a very good job of listening.  Of course I am afraid to pull out the wicked witch voice with someone else's kid.  Anyway, it was kind of bonding, which is a good thing.

So this morning, the advocate and I met with the full IEP team.  This team included Jack's teacher, the OT, the PT, the speech pathologist, the special educator, the school psychologist, a psychology student, the assistant principle and the school nurse.  Not intimidating at all.  The meeting lasted less than an hour and was really the least complicated one thus far.  It was basically a session devoted to planning Jack's next set of evaluations.  He is due to have them completed before his sixth birthday.  Also, his diagnosis needs to be changed from developmental delay to something more specific at this point.  I came home with loads of paperwork to fill out regarding his behavior and focus.  His teacher will fill out the same.  There are a mind-boggling number of different evaluations to be completed by the various staff members.  Luckily they have 60 days to get it all done.  I anticipate Jack qualifying for a significant increase in his services after this process is completed.  And it feels really good to get it all started.  I feel like I am slowly becoming more familiar with this process and it doesn't hurt that I am getting to know the team.  As I see them with Jack, my confidence in them is growing.  For the moment we seem to be on the same page.

Tomorrow I will be going to yet another meeting.  This one is at the special needs daycare center I have been considering for Nathan for his afternoon care.  I found out that two of his little ECI classmates are already going to this facility after class on the same bus Nate is on, so this is a huge comfort.  That being said, I am feeling very bittersweet at the prospect of having both boys out of the house all day.  I love having Natey nearby, knowing that if he gets a boo boo I can kiss it, or if he is trying to say a new word I will hear it.  It's hard to give that up. And I also have to consider the fact that it's already March.  Even if this center works perfectly for Nate's half days, summer break is right around the corner and then I will need care for Jack as well, and full day care for Nate when he is not in his extended school year program.  There is no way we can afford this center, full-time for both boys.  It would be over $3000 a month.  The center is considered a higher level of care than a typical daycare center as it offers things like social skills groups, speech, and other developmental activities.  So we may be eligible for some type of aid- grants or something.  The director can assist in this process.  Fingers crossed on that front.

So as you can see, I am really bored.  Ha.  I am also a busy little bee locating ipad apps that are appropriate for the boys and trying them out.  Jack and I tried a reading program before bed last night and he rocked it.  I am so excited to have this tool!

Explain It To Me Like I'm a Two Year Old...

I got the "draft" copy of Jack's "new" IEP today in his school folder.  The meeting is in a week, and parents have to get the materials ahead of time.  Fine.  I didn't want to look- the fact that it even came with the disclaimer that "not much will be different because Jack is going to be reassessed" should have tipped me off.  And this is true, next Thursday I will be signing consents for this reassessment- his "label" thus far has been developmental delay, and this will be changed to autism.  OK fine.  But I looked anyway.

Really?  After all I have heard and been told this year, the talk of the weakness of his grip and his sensory issues, he still only needs 3 30 minute OT sessions a month??  They did increase his special education time, which was an hour a week.  They increased it to 2.5 hours a week.  Out of 35 hours in school.  When I already know that he has been having an aide an hour a day and this is not adequate- this per his teacher.  So this increase doesn't even cover what he's getting.  How does this make sense??? Someone please explain this to me....

Once I sign consents for assessments they have 6 WEEKS to complete them.  And then when they draw up the new IEP they have 4 weeks to implement the changes.  I am not a mathematician, but doesn't that take us almost to the end of the school year?

Stepping Into the Ring

We have had a relatively event free month.  All done.  First of all, Jack has not slept more than an hour and a half in a row in the past week and a half.  He has even taken this a step further and will not sleep AT ALL unless I am in the bed with him.  Last night I woke up about 10 times with him.  At one point I found him sitting ON ME reading a magazine. 

We have his IEP meeting on Thursday.  I am a nervous wreck.  I know he needs a full time aid.  I have no idea how to accomplish this.  I am embarassed to say this- however- I need an advocate for him.  He does not have discipline issues, he is not a "risk" to the school.  I need to prove to the powers that be that he needs this aid for attention issues and motor issues- to accomplish his educational goals.  His teacher freely states that he is falling behind academically because he cannot focus on his work.   I have letters from his pediatrician and his private OT.  I have samples of his work from the past few months with and without the aid.  I know this is not enough.  I am doing all the research I can, and unfortunately all of this research has told me I need the advocate.  That I am not going to be listened to.  I am a basketcase.  Advocates cost thousands of dollars. 

We also have our next appointment with the developmental pediatrician this Friday.  Lab results, more tests I am sure, and more meds.  Oh, and before that, Nate and I are going to be videotaped "playing" again.  So that should be fun.  We also have the 8 hour day at the SEED study coming up. 

Thus my post of facebook this morning:

"I have decided I no longer want to be an adult....if anyone needs me I will be in my couch cushion and bed sheet fort....coloring."

Awesome

Taking Steps for Jack

I got a chance to really talk to Jack's teacher yesterday afternoon which was extremely helpful and encouraging.  I am very impressed by her take charge attitude and unwillingness to accept the party line.  Reminds me of someone else I know :).  She has been a teacher for many years, Jack's pre-K teacher from last year used to work with her at a different school.  I am starting to think that she may have facilitated his placement in her classroom.  Anyway, Jack came back in from recess and continued to cry and need the headphones.  He was convinced that the red light on the smoke detector in the classroom was really an indication that it was about to go off, no one was able to convince him otherwise.  I really hope we don't have a recurrence today, but he seems like he is in a pretty good place this morning, didn't wake up last night, etc. 

As much as I hate that Jack went through this, and frankly that his teacher went through this, it was probably a good thing for his long term services at school.  Jack is such a great kid that until you actually witness his extreme behaviors, it's difficult to believe they exist.  Well now they know (and knowing is half the battle- sorry GI Joe moment there).  I asked his teacher how the observation with the school psychologist went and she said it was useless, as Jack was fascinated by what they were doing at the time and sat still and paid attention.  Typical.  Then she said that she didn't want to get my hopes up, but she has contacted the school board resource person to come observe Jack in class.  She is apparently a person with the power to allocate more resources to Jack.  So once again, the teacher is being very proactive.  She did go on to explain to me that the issue is that Jack does not have behavioral problems. Trisha- you hit the nail on the head in your comment on facebook about my post yesterday.  He is not "dangerous", he is not disruptive to other students, other than interrupting during stories with comments, etc.  Unfortunately the resources always go to the child that could be a danger to himself or others first- and that's appropriate.  The problem is that with limited resources, where does that leave the kids that need help for developmental issues?  Screwed basically.  She suggested that if this person does not make the decision that more services are required, I need to call an "emergency" IEP meeting.  A parent has the right to do this at any time.  And I am prepared to do that at this point.  This brings me back to my second or third post ever, where I was questioning the need for an "advocate" in IEP meetings.  Eating. my. words.  I get it now.  It's not a matter of me not wanting to go to bat for Jack- I of course will be there every step of the way, but how aware am I of the resources that are even available?  How do I even know what to request?  There are some informal resources that I will probably consult first, but if it becomes necessary, I am also willing to take this step.  Sigh

The next call I made yesterday (yes it was a busy day) was to Jack's private OT.  I wanted to make her aware of the problems Jack is having, pick her brain, and see if she would be willing to work with Jack's school OT.  She was very willing to do that- I just have to sign a release at our next appointment.  She is even willing to go observe him in the classroom if it becomes necessary.  School OT's are not really in the classroom to deal with the sensory issues that Jack has.  They are there to deal with the fine motor issues that prevent him, and other children from completing their schoolwork.  So his private OT may be able to assist with some strategies to make the classroom a more suitable learning environment for Jack.  She is also putting together a list of potential interventions that we will go through at his appointment tomorrow.  On this journey, we have been blessed to connect with some really really amazing practitioners.  She, and Jack's teacher are definitely among them.

So I am feeling a little calmer, a little more "in control" than I was yesterday.  Plans are good.  Interventions are good.  Keep the positive thoughts coming- your support is invaluable to me.

You May be An #Autism Parent If....

So I have been a part of the Twitter Autism community for a short time now, but I have to say it has been one of my most positive experiences as an Autism mom.  I was telling our marriage counselor last night that not only is it a constant source of information and resources, it is also constant validation.  I am hearing so many of the same experiences that I have on a daily basis.  It is refreshing and reassuring.  I am not alone in the things I observe and live with.  For instance, there is a whole thread that is- you may be an autism parent if....

I will post some of my favorites, just so you get an idea.
You May be An Autism Parent if:

You've learned what really matters in this journey of life

Your child is turning out to be your teacher...

Your child tells you the same things/stories over and over and over again until you want to scream!!!

You're grateful for any achievement your child makes, no matter how seemingly small

 The really great days stand out because they are so rare

You feel like a chemist each night fixing meds and vitamins.  It's funny because it's true.

The walk home from school takes ages as s/he has to hug each lampost they pass.

You don't pay attention to gender specific toys or movies, as long as your child loves it, that's what matters

You cut ties with all negativity/judgement and focus on those who build you up and support- nobody else matters.

You feel like everyday is a battle with the school system.  Advocacy never takes a break. 

The morning starts with a meltdown over which light switch to turn on.

You consider adding "days without incident" sign to the wall

Almost every day you feel the highest of highs and the lowest of lows within seconds of each other. 

Your son has full conversations with himself on a regular basis.  And you find out a lot about your son this way.

You have to explain the next days plan every night before bed to make it through the next day or you could pay.

Your child has to go to the surgery center and go under gas to get their teeth cleaned.

binder has a whole other meaning- yours is full of OT, PT, IEP, GI consult, neurosych, lab tests, speech eval...

You want to smack anyone who says, don't worry, he will grow out of it.


Any single one of these could apply to our family on any given day.  And most families of a child with autism.  This sense of community is priceless to me. 

Wish I could give each person credit for the thoughts they shared, instead I will just say, if you are on twitter, type in #youmaybeanautismparentif.  It's worth the read. 

Navigating the School System When Your Child Has #Asperger's or #Autism

I am venturing into dangerous territory these days.....but I am feeling overwhelmed about how I should be approaching Jack's issues at school.  I do not want to be a parent that the teacher dreads talking to, I don't want to be a parent bully.  But I am worried that my son is not getting all of the services he needs at school.  It just doesn't seem right to me that a child with what I would consider substantial fine motor deficits is only seen 3 times a MONTH at school.  And gets 30 minutes of special education a day when he can't sit still in his chair for 5 minutes. 

I volunteered in Jack's class yesterday- it was actually a very pleasant experience in terms of meeting the other kids and watching Jack handle the transitions fairly well, even with mommy there as a distractor.  He went from center to center without complaint, even though he wasn't coming to mine right away.  When he came to mine he talked to me A LOT, but didn't completely monopolize my time.  That being said, yesterday morning was the time that the OT was working with him, so she was moving from center to center with him and redirecting his attention frequently.  And she is good.  The three times a month that she gets to see him.  Which is not nearly enough.  But even after she left, Jack sat on the rug with his lunchbag waiting to go to the cafeteria, he did not get up and come over to me, until his name was called for lunch, at which time he came up and threw his arms around me and said "mommy, I sure am gonna miss you!".  What a kid.  I met the three little boys he is constantly talking about- they seem like nice kids, and they had quite a lot to say to me about Jack, which was so cute, and comforting at the same time.  They like him too!

The rough part- the "center" I was running involved cutting pictures out of magazines and writing the names of the objects (all starting with S).  So I helped every child in the class spell and write these words.  And I saw where Jack's handwriting is in comparison to every other child in that class.  I can't even explain it.  All of these letters were formed completely independently, from dictation.  Half the time we need to hold Jack's hand still and force him to form the letters.  His strength is not good either, it is a constant struggle to get him to push down with enough force to really make his writing readable.  In class he has the short pencil, a special grip, and a slanted work top to try and help him gain more control.  And the OT was drawing a box where each letter should be in order to try and help him keep his writing somewhat straight, as he is usually all over the place.  Did it help?  I think so.  But what good does this really do for an hour once a week????  How is he supposed to retain these techniques when they are done so sporadically?  I am sure the special educator tries to reinforce as much as she can, but there is no room for much individualized attention in a class of 24 5 years olds, so how can his teacher be expected to do these things regularly?  The school psychologist is coming to observe Jack on Thursday, and I am hopeful that there will be some recommendations for changes, or in other words, increased services.  If there are not, then mommy may have to request an IEP meeting.  It's October, there is plenty of time to get a good system in place for Jack.  And telling me that they are "short on aides" is just not going to cut it with me.  If there is a need, they need to fill it.  End of discussion.

Working with Jack's Teacher

Today my faith was officially restored in Jack's team at school.  It was very difficult to transition from the school where he attended pre-K to the new one.  It is a fabulous school- it's just that when you have a special needs child it's not just a new teacher, new kids, a new environment.  It's a whole new team- special educator, OT, speech.  These people (and of course the teacher) can make or break Jack's school experience.  And I certainly don't want him to have a negative experience, I want him to like school.  Thus far, I could tell that Jack's teacher has been a bit stressed about him.  I will not say overwhelmed, as she is a very seasoned teacher and I have no doubt she's worked with kids tougher than him.  We have been exchanging emails, and at first I was hearing what was wrong but not getting the impression of any suggested solutions.  Looking back, I think she was almost confirming with me that I see the same issues at home.  And after all, I am the one who contacted her about issues I presumed she was facing, just knowing my son.   I am not one of those parents who cannot see my child's faults, I am well aware of the challenges that teaching Jack must bring.  And I can empathize and sympathize with her.  Honestly, the first time a teacher brought Jack's classroom issues to my attention, I was worried and scared, but I was relieved. I was a first time mom, and when I tried to talk to friends and relatives about him and behaviors that were really concerning me, I would get responses like, my kid does that too, or YOU did that too.  And they weren't lying, each one of their children may have had issues with whatever behavior we were discussing- the problem is that Jack has issues with ALL of those behaviors.  So I walked around for close to 2 years feeling that something was off but feeling like I must be a moron because no one else was acknowledging it.  When I took him to Child Find, it was a relief to me.  It was not a happy thing, but they validated my concerns, and frankly some of the weight of all of this was taken off my shoulders.  I was no longer the only one who was aware of the situation.   

I have been eager to work with Jack's teacher, but unsure.  I don't want to seem like a pushy parent (unless it becomes necessary), or give her the impression that I don't have faith in her experience and expertise.  But of course, he is my son, and for every hour that she is observing some type of Asperger's or ADHD type behavior I have probably had a hundred.  She emailed me on Friday and said that she has been trying to give Jack some type of incentive to finish his work- that she gave him a stuffed crab and it seemed very effective, but that the other kids were of course jealous that he got to hold it.  She asked if I by chance had anything like this at home that I could send in.  I almost choked with laughter when I read that- do we have crabs?  HA  I told her I would be happy to send anything at all in to school that would help.  I also suggested a "short" pencil, since this seems to give him more control, and a fidget for circle time (basically a toy he can fiddle with so he doesn't feel the need to move around so much- like a kush).

I didn't hear back from her this weekend, not that I expected to.  In the meantime, we had our appointment with the pediatrician yesterday.  I took in examples of Jack's papers and we had a nice long discussion.  On a Saturday.  She strongly feels that Jack will eventually need to take some type of medication, while observing him she commented that it would be nearly impossible to get him to sit still in class.  Then of course she called him brilliant, and daddy decided to floor her by asking Jack to name word war II airplanes- which he did for about 10 minutes.  In terms of the medication issue, John and I are making our educated, informed decision.  I know that I am usually very open about everything on this blog, but this is one thing I am not ready to talk about.  I will touch on it eventually, just not right now.  I will say that I have complete confidence in our pediatrician and take her recommendations very seriously.  Ironically, I ran into Jack's assistant teacher from pre-K in the grocery store last night.  Please try not to be too jealous of the glamorous life I lead- my solo grocery trip is the highlight of my week and it's so nice and quiet on Saturday night (yes, I am pathetic, and proud).  At first she just said hi in passing, and I figured that was it.  But we ended up in line next to each other and she came over to ask how Jack was doing in kindergarten.  I gave her a brief summary, she didn't seem surprised, but she did express multiple times what a sweet sweet boy he is, and that she and the head teacher had been wondering about him.  She told me to be sure to let his current teacher know that they would be happy to talk to her. I was touched. 

I promise, this will all become cohesive :-).  I got an email from Jack's current teacher this evening.  And, while some of what she had to say will always be hard to hear about your child, it made me realize that she is really pulling for Jack and willing to go above and beyond to help him.  The fact that she emailed on a Sunday alone was very impressive.  She thanked me and said she would love for me to bring those things in (I am volunteering in the classroom tomorrow- gulp), she also said they would be sure to use the short pencil.  Not sure why that didn't end up in the OT notes from the previous school.  Oh well.  She told me they are really short on aides at the school right now, and that the special educator is talking about pulling him from the classroom to work with him.  She has also contacted the school psychologist, who is going to come observe Jack this Thursday and make recommendations about how to proceed in terms of assistance in the classroom.  I am hopeful that this might yield additional help for him.  Then she said the thing that made me realize that she rocks.  She told me that she had called Jack's teacher from last year to talk about him.  About what had worked best in the classroom, what his strengths were, etc.  I was so glad to hear this.  To me, these efforts really show a great deal of dedication and concern.  I know for sure that she is in Jack's corner.

I know that I should probably be more upset about how much Jack is struggling, maybe I am just numb, or maybe I am developing a thicker skin.  It helps that his pediatrician reminded me that with how smart he is, and how easily he acquires knowledge even with all of the hurdles he has to face, he doesn't even really "need" kindergarten curriculum.  He needs the socialization, he needs to learn classroom "decorum", etc.  Any additional knowledge is really just cake, as he is pretty advanced academically.  The fact that we are confronting these problems early will give us the time to find solutions for him behaviorally before he runs into real trouble academically. That being said, I just want my child to do well in school, and feel secure and accepted while he is there.  We have some serious work to do. 

Insurance Rant

OK, I am a nurse case manager for an insurance company.  This is a double-edged sword FOR SURE.  This was never what I would have considered my "dream job", but it actually has come to be exactly that- because of my family.  It enables me to be close by, have a regular schedule, and get the boys to appointments all while making a good income.  And I love helping people, and I feel like I really do that- I work with organ transplant candidates and recipients, for a medicaid/medicare insurance plan. 

That is why I become all the more enraged when something I know should have been done, and should not have been difficult, slips through the cracks for my kids.  I got a call from Nate's OT today, at 4pm, stating that Nate has reached his 60th visit and that if I want him to be seen tomorrow I will have to pay out of pocket, as the insurance company has no record of him being granted extra sessions.  This, when I have a letter from the HR department of my husband's work stating that Nate has been granted these extra sessions for this year- enough to take him through December twice a week.  First of all, the health insurance company was not even given the "freedom" to make a medical determination as to whether these extra sessions were necessary.  No, it was fully a financial decision by the HR department, who then needed to contact our insurance and inform them of this change.  Somehow, this did not occur.  Grrrrrrrrr.......My issues with this situation are many- first of all, the insurance company has nurses and physicians whose sole job is to determine medical necessity of such changes.  So why weren't they entrusted to do this?  Why did it have to go through HR in the first place?  And why the break down in communication?  My husband and I certainly did our due diligence, he wrote a letter fully explaining the situation and was "granted" these sessions, but told that if we want Nate to be able to go next year, we will need to subscribe to the more expensive insurance plan.  It costs 3x as much.  Nice.  Not to mention that even with the plan we are on, they only allow 60 sessions a calendar year- and that is the number of sessions of OT, PT and speech combined.  So if I was taking Nate to speech as well, we would have run out of sessions when?  In May?  How is that reasonable?  I mean, I always joke that I paid five dollars for each of my children- clearly that is not accurate over all, but truthfully, I did pay one five dollar copay at my first OB appointment and that was it.  Pretty sure that cost the insurance company more than Nate's OT sessions- I didn't have a baby this year- I would like a transfer of funds, lol.  Just so frustrated with this.

And while I'm at it, let's just touch on the inequities of different insurance plans in general.  I find myself practically lunging at the T.V. during the debates this year- being in the trenches of administering both medicaid and medicare has changed my views on things so much.  Knowledge can be a scary and maddening thing.  I want to make clear before I continue- I am not criticizing medicaid and medicare for the benefits they provide.  I am criticizing private insurance.  Because, see, I KNOW what kind of benefits the medicaid and medicare recipients are afforded.  And I know the benefits that my family, who pays for their insurance, is afforded.  I know that my clients often receive sedan service to their medical appointments- not a bus pass, not an ambulance, SEDAN SERVICE. I know that if we approve a certain number of visits for a member and they end up needing more, the provider simply has to write a letter stating why this service is necessary and after review, the member can have the service.  I know that my medicaid recipients have little to no copays on medications.  And that if they by chance have a substantial work history and qualify for medicare on top of this (because of their hard work or severe medical condition), they actually wind up paying MORE for their medications.  Why?  Because medicare is not as comprehensive as medicaid, and many states, in an effort to cut the budget have decided that if medicaid (which is state run by the way, not federal) is the secondary insurance they will not cover the difference on prescriptions that are covered by medicare.  Medicare's copays are way more expensive than medicaid's.  Soooo..... I find responsible people who have qualified for medicare in addition to having low enough income to qualify for medicaid are being punished.  This is pretty common among my organ transplant patients- they work, they get sick, they can't work, they qualify for medicaid.  And then when they either hit a certain age, or begin dialysis they qualify for medicare.  Sounds great right?  Dual coverage?  Guess what- transplant meds, they're really really expensive.  If the medicare copay is a percentage- half of these patients can't afford their meds!  Seems like punishment to me.

Can you tell I am passionate about this?  I did what I never ever do to the insurance coordinator at Nate's OT- and I'm not proud of it.  However it served it's purpose.  I yelled.  I said "so what you're telling me is that I have to call HR and I have to call the insurance company and bring THEM together, which I'm pretty sure they should be able to accomplish on their own, or you won't see my son.  Oh, and you're telling me this at 4pm on FRIDAY?  When his next appointment is Saturday?"  I don't think so.  Our family is a goldmine to the therapy center- both boys go twice a week most of the time- I think they can work with us.  And she agreed eventually that if I sign a waiver stating that if the insurance refuses to cover the sessions I will be responsible that they will see Nate tomorrow.  You know, the state funds medicaid, and the federal government funds medicare- but when my patient needs something outside the "norm" I don't have to give them a buzz to get the needed care.  I just find this strange, that's all.  Also, to be clear, we love the boys' OT's.  They are wonderful to them, and the insurance coordinator has been great too- she is the one who notified us ahead of time that we were coming up on our "cap" in the first place.  So that we could get this modification in place.  So I feel bad for yelling- but I am glad that Nate will be going to his therapy appointment tomorrow.