A New School For Jack

I have been sitting on this for over a week now, I knew that I needed to write this, not only to keep friends, family, and other followers in the loop, but also to process all that has been going on for my own sake.    In a year of many changes for the boys, these past 2 months have led to quite possibly the biggest and most traumatic change for our family in a long time.  My husband and I have been to multiple IEP meetings (again) this fall, and through many discussions between us, with educators, therapists, administrators, and advocates.  And we finally came to a decision. 

Jack is moving to a new school in January, another mainstream elementary school, where they can better “accommodate” him.  I have had soooo many people ask why this can’t be done at his home school, where he has been since kindergarten.  There is no easy answer.  There is no real answer.  Jack has had significant special education services in school since about midway through kindergarten.  But to be honest, it has never been enough. 

He was diagnosed with Asperger’s at age 3.  At that point he was provided with (minimal) special education services in his regular preschool.  He probably should have gone to the same early childhood intervention program that Nathan went to; it probably would have benefitted him greatly.  But, for lack of a better explanation, he could talk his way around it.  He sounds (and really is) so smart when he opens his mouth, he knows so many facts; he has ALWAYS been able to talk (well since he was 18 mos).  When they have autism, adhd, and anxiety, the ability to speak is such a blessing for a child as it relates to being able to communicate what they need, and such an obstacle when trying to get this child what he deserves.  This is coming from a mom who has one child with speech and one who struggles tremendously with verbal communication.  Speech almost automatically lumps a child into the category of “high functioning” and sometimes that just isn’t the case!  Do I think Jack is high functioning?  Maybe.  I honestly don’t know what I think at this point, and I don’t know which behaviors are autism, which are adhd, etc.  The comingling diagnoses complicate the situation all the more. 

What I DO know is that this little boy has had significant challenges since birth, with self-regulation particularly- there was never any self-soothing, or entertaining himself, constant attention has always been required.  And as exhausting as that is for us as his parents and for his educators as well, I can only imagine how exhausting it must be for him. 

He went through public pre-K, with again, minimal special education services.  He arrived in kindergarten with an hour of special education services a WEEK.  A titch of OT.  NO speech.  It makes me shudder even now to think about how much more he deserved and required back then.  We hired an advocate to come with us to his kindergarten IEP meeting, and he ended up with an aide full time, including the walk to and from the bus, and lunch, recess etc.  He needed that much guidance, which to me and his father was a “duh” kind of moment.  But it took a lot of fighting to get these initial services for him.

We have slowly added speech services (for actual conversation), more pull out services, and assistive technology to his IEP.

Before school work became multi-step and required more attention, he could compensate for his challenges to a certain extent.  We are way past that point and for the past 2 years we have watched him struggle, particularly with math.  Here is a hint of how smart he is though- through all of his attention issues, his obsessions with other things, obstacles in other areas; he has been able to maintain grade level performance in reading and spelling.  I would estimate that he is able to maintain probably 10-25% of the amount of attention that the other kids have.  This makes me proud, and it makes me sad, because I can only begin to imagine what he could do if we could get his full attention for a little more of his day.  That being said, we have tried 6 ADHD medications- he has had significant issues with all of them.  He is in therapy for his anxiety, ABA for his behavior and focus, and we have tried a multitude of other medications for anxiety,etc.  We can’t seem to get him there.

Add in a school that is “highly ranked” academically and known in special education circles as not being “friendly” to kids with special needs, and it’s a recipe for disaster.  Now I need to say one thing- the actual special educators who have worked with Jack (at least since first grade)?  They are nothing short of amazing people, amazing teachers.  People who will go above and beyond to give your kid what they need, even when they are not allotted the time and resources to do so.  We have not felt the support of the administration when it comes to keeping our son at his home school.    I know of multiple kids in other local schools with more involved IEP’s who remain in their home schools despite the fact that there is no dedicated “pull out” classroom available to them.  Children who are fully out of the classroom for language arts and math, who are not potty trained and remain in their home schools.  Yet, we are told that because Jack requires pull out for math and language arts (and require is a strong word in language arts, let’s just say he makes the majority of his progress in this setting)- his school cannot accommodate him because they do not have ”full pull out” capability.  When I was first told this, I wanted to fight, I wanted to scream and tell them my son deserved to stay (because he does).  Then I thought about Jack.  Really thought about what he needed.  His behavior has been worsening at home, he fights homework even more than he used to, his anxiety across all settings is much worse.  All of these things are symptoms of a larger problem.

I know he feels the pressure of not being able to keep up, of not being fully accepted as he is.  I know that because he is unusually self-aware, he knows he is not “the same” as the other kids in school.  And it is bothering him.  A lot.  There were two choices for us as his parents- we could fight, go to mediation, force the school to comply, keep Jack there, and watch him continue with the same struggles because let’s face it, no matter how hard these teachers work to give him what he needs, their other responsibilities will not be lightened-- OR we could change something.  We choose to change something.  We chose to send him to a school with a formal “pull out” classroom, partly for this feature.  To be honest, there were several other deciding factors- the school is much smaller, the faculty has the reputation of being “special needs friendly”.  And that is the real reason we agreed.  Parenting is HARD.  Other parents may have come to a different decision- but we have come to understand that “fighting the good fight” is not always what is best for our son.  While we want him to have what he “deserves” (aka to be able to stay in his home school), we also have enough perspective to grasp that maybe he deserves even more than that.    We have seen what a school that functions with a greater degree of acceptance can accomplish just by watching Nate this past year in his autism classroom.  And to be clear it goes both ways- not only is Nate greeted with more acceptance by the faculty and staff, but the other kids in the school are taught to accept children with differences  at a much different level than where Jack has been going to school.  The atmosphere is completely transformed.

I have known this was coming for a long time.  A loooong time. We have two neighbors who have children with special needs.  When I told them 4 years ago that I was sending Jack to our “home school”, the response I received was ominous at best- “good luck”.  Ouch.  Both of these other children ended up in different placements- the parents wanted them out of the home school by the time they went.  And now I get it. 

Please keep our sweet boy in your thoughts - this is such an enormous transition for him (and our whole family).  And from his perspective it has all happened so quickly- we didn’t tell him about it until a definite plan was in place, and unfortunately that was just a week ago, and then his last day at his current school was last Wednesday (yes, the day before Christmas eve, I know).  After Christmas break he goes to his new school.  He will miss his friends, his teachers, and the aides who spent countless hours with him every single day.  I know he will form new bonds, I just wish he didn’t have to.  

Why I'm Not Having A Birthday Party For My Son

Nathan is turning 6 this week- SIX!!!    He has come so far, and we are so very thankful.  And here's the thing, so have we, as his parents.

Thus, we are not having a birthday party for Nate this year.

Parents can all acknowledge that the first few years of our kids' lives, the birthday parties aren't really about the kids- they are about the parents, family and friends celebrating the child (and the act of keeping them alive lol).  But as kids get older, that all changes- the parties revolve around the child's interests, their preferred activities, their preferred friends.  And that's how it should be.  Two years ago, Jack's wish was to go to the Museum of Natural History with mom and dad.  So that's what we did.

What have we been doing with Nathan?

We have been guessing.  He "seems" to like Mickey, let's try that this year.  What should we do?  Who should we invite?  It has continued to be OUR friends, people we know through various organizations, autism causes, etc.  Which is fine of course, but was it about Nate and what he wanted?

Well how could it be?  He can't tell us.  It's very similar to how I continue to play detective whenever he is "fussy", trying to figure out what is wrong.  He still can't tell me, although he is getting closer.

He watches the same scene of "Frozen" over and over again- does he like "Frozen"?  Or the movement of the snow in that scene?  Or the noises?  Or the song that is playing?  If I did a Frozen themed birthday party would he love it?  Or wish for an avalanche themed birthday party (because that's the part he is watching on repeat)?  Let's take it a step further- does he want a party?  Does he like being in a crowd?  When do I, as his mother, know that he is actually happy??

Here:

Right Here is my happy son

Below is a situation that would make most kids ecstatic.  I took Nate to our local toy store today, just let him loose, and waited for him to "find" a toy he would like for his birthday.  There is a snip it of that situation in this video.  We were there for over an hour.  He sat on one riding toy, and played with the jingle bells.  I bought the riding toy- but only after making sure the toy store accepted returns.  

As with most things in our world, results are not typical.  So guess what?  We have decided birthdays will not be typical either!  I am not wrapping his presents this year, I am setting them up.  I have no expectation that he will play with any of them, at least not initially.  I have some new beads I will give him, because I KNOW that will make him happy, and it's HIS day.  He deserves to feel happy!  

We will have chick fil a for dinner.  I will make a cake, with a little hill and olaf rolling down it (aka the avalanche) and we will probably all say "what the what?? THAT happened" (if you've seen the movie you know).  We will get in our jammies, and cuddle in bed with one of the sweetest boys who has ever lived.  

And that is how we are gonna roll!

What bothers me

Feeling helpless

Feeling like a failure as a mom

I don't even know how to begin this post.

I haven't written in so long because it's all too much.

I can't even go into details, I can't because the little boy involved in this scenario doesn't even know about the hurt this mama is feeling.  He doesn't know that his little life will soon be turned upside down.  And I have no plans to tell him- not until I have to.  

In the meantime what can I even say here?  How can I talk about our journey when I can't even talk about what's upsetting me so much?

I guess I can say this

I have taken on a lot as these boys' mom.  More than I have ever discussed, more than I ever knew that I could.  And I am happy to do it.  I don't mind the hours I have spent on the phone with insurance- because I have gotten the boys what they needed.  I don't mind the hours spent in waiting rooms- because the boys were receiving crucial therapies.  I don't mind the constant calls from schools, developmental pediatricians, psychologists, behavioral therapists, teachers- I want to know what is going on with my children, I want to help them be the best that they can be. I don't mind having 2-3 therapists in my home every single evening- in fact I welcome it.  

But I do mind feeling like a failure.  

I do mind feeling that all the tears, and effort, and prayers, and pleading, and working have not gotten us to where we need to be.  I do mind feeling as though my son is about to suffer as a result of us not making the progress we needed and wanted.  I do mind feeling like people are giving up on him when he has the potential to be something AMAZING.

I do mind feeling like he is being "lumped" into a category where he doesn't belong.  I do mind that I have been screaming (sometimes silently) for years that the school was not seeing the bigger picture and that he was going to stumble because of it- and that now that he is, it feels like he is being punished.   Like they wanted to keep him in the "mainstream" category for so long that now that they have changed their minds, they are choosing to lose faith in his abilities and assets.   

It bothers me that our family is going to feel even more isolated than it already does, that I feel like both my son and myself are losing a huge part of our social support circle- one that is very hard for a kid like mine to build.  

It bothers me that the last shred of parenting "normalcy" is now going to be gone.

Most of all it bothers me that I couldn't prevent it, I can't fix it, and I won't be able to shield my boy from the confusion and fear that change will bring.

But I tried so damned hard, I really did .

Sometimes All I Need...

Is a pat on the back, a hand on my shoulder...a reminder that I am not a bad mother.

Sometimes I don't even realize how low I am feeling about my boys' challenges until someone says to me- "you are doing a good job" or "I have been a behavioral therapist for 20 years and trust me, you are a wonderful parent." It doesn't occur to me that I think of myself as this terrible, inadequate mother- but I do.

It also doesn't feel like the teachers at school, peers, and many other professionals can really see what I am trying to do, how much I am trying to do.  That I would love to take my sons to occupational therapy twice a week, but it would truthfully require the therapist to accept appointments at 10pm (oh and a lottery win).  That I sit with my son both in the evenings after school, work and therapy, and in the mornings, working on concepts that his peers apparently fly through.  That sometimes it takes 20 minutes of begging to simply get him to look at a worksheet, much less start it.  That I would rather take a bullet to the brain than think or hear about all of the typical kid experiences it feels like my sons are missing out on.

So when just one person has these things to say to me- and I know that she knows what she's talking about- I feel like I can take a deep breath, and for a few minutes put aside the 4 grant applications for services still sitting on my desk, the fact that jacks developmental pediatrician hasn't called me back, the fact that I am taking him to his first cognitive behavioral therapy next week, which we are skipping another therapy appointment to attend.  It helps me swallow the times that my son has hit and spit on me this week.  It helps me to stop beating myself up over the fact that we are 10 weeks into intensive potty training with Nate and have had not even one single success.  Or that I had to choose between taking him to speech with a quality therapist or to OT with a wonderful therapist (and I chose speech).

It also helps me swallow the guilt I feel for taking better care of myself lately- for eating well and taking the time to exercise.  I am valuable to my children, my health and well being are not just for me.

To the person who reminded me of this today- thank you- on so many levels.

To Those Who Have Said....

As autism parents, we all experience an incredible amount of judgment, advice, “words of wisdom” and whether intentional or not, belittling.  Sometimes it is truly a result of someone trying to make us feel better, the whole “it’s not that bad” idea.  But the bottom line is that when your children are young and newly diagnosed with autism, well, it IS that bad.  It’s awful.  I am sharing this not to make anyone feel badly who may have said these things, but to help open people’s eyes to the truth.  Autism is not a blessing in our house, it’s not.  And frankly, autism is one of the most belittled, minimized, diagnoses out there right now, between the kids who reportedly “recover”, to the kids who thrive, to the idea that it’s overdiagnosed and not that big of a deal.  Then to the, “why are you treating them, accept them as they are?” or “what else are you doing for them?”, or “why seek medical treatment when it’s a not a medical disorder?” (YES IT IS!!!!).  Everyone wants to fight over what causes autism, and talk down when they don’t agree with another’s opinion.  Everyone wants to debate what to do for children who have autism.  Nothing we do as autism parents is respected in the way that it should be.  Everything is minimized, until another child drowns, or a high schooler goes on a shooting rampage and all of the sudden people are talking about him/her being on the spectrum.  It’s a mighty fine ball of wax to be handed as young parents- because there is no way to “do” this.  There is only feeling your way and praying and finding amazing people who have been there and want to help.  It’s a big cluster fuck if I’m being honest, which apparently today I am. 

So without further ado, to those who have said:

“Of course Nathan is going to talk, he’s just a little late- I have zero doubts and you need to stop stressing so much about it”

Wrong- here we are today, at almost 6 years old.  I was right to stress because so much blood, sweat and tears have gone into getting my sweet boy to say MAMA to me, purposefully that you can’t even fathom it.  You have no idea what that feels like, to put your heart and soul into one little being every single day for 6 years and finally, finally hear him say mama (again in our case, as he said it before he regressed and then lost it).  Any parent, if their child is not developing normally, is going to stress- and they are right to!  You do not have the answers- no one does- that’s the scariest part of all. 

“Get him into early intervention, you won’t even recognize him by next year”  (said by a teacher, well meaning)

I did it- 4.5 years ago.  I recognize Nathan quite well.  He is progressing now.  But for close to 2 years, I can truthfully say that he did not.  Everyone knows a kid who had intervention and made incredible strides- it’s so awesome.  But it is not the norm.  Not every child does this.  Mine did not.  And for those two years, I was so angry at that early intervention teacher, because she said it!  I waited for it!  It didn’t happen!  And God knows I wanted it to.  I took him everywhere I could, took communication classes, took him to studies at Hopkins and NIH.  And he didn’t progress- until he did.  And no one can predict when and if that is going to happen. 

“my kid is obsessed with things too”

WRONG WRONG WRONG!!!!!! If I showed you an age progression of photos of Jack, you would see him with airplanes in his hands from age 2 until now, which is age 8.  You cannot have a conversation with my son without him bringing up his obsession at least 3 or 4 times- on a good day.  His obsessions keep him from being able to focus on anything, and I mean anything else.  He struggles in school, he struggles to eat, he struggles in therapy, he struggles to do really any tasks because his little brain cannot move past airplanes, or bulls, or whales, or crabs….it is REAL, and while your child may go through a week, or even a month of this from time to time, we are not residing on the same planet on this topic.  Not even close.

“He seems fine, and god is he cute!”

Now see, I can understand what you are trying to do here, I really can.  And I more than anyone know just how cute my kids are.  (they ARE!).  But it actually makes me feel like crap when you say he seems fine (either boy).  They are not fine, not even close.  They may be doing well today.  That being said, while you may even mean, right at this moment, the statement conveys that there is nothing going on here- and it minimizes our daily struggles. 

“My kids hate changes in their routines too!”

All children thrive on routine, I am not disputing that.  But can you go down a grocery store aisle for a second time without a full on meltdown?  I can’t.  Can you take a different route home if there is traffic?  I can’t.  Can you walk around your neighborhood a different way?  I can’t.  Can you leave the radio playing as you pull into the driveway?  I can’t!  When a therapy provider calls and says they can’t make it, or that they will be late, or that they need to change days, do you worry about how you will accommodate that change with work, or do you worry about the fact that it will likely throw your son into a tailspin?  I am B (well and A) That’s what I mean by rigid.  That. 

He’ll grow out of it (in regards to Jack)

I just can’t even.  Yes, he has learned some new strategies to help him function a little better in life.  Has he grown out of his issues?  NO.  Some of his issues have lessened, he is more capable of dealing with unusual sounds and things like that, but these issues are replaced with others, such as new behaviors and even aggression most recently.  This is not thumb sucking people, or a blankie.  This is a lifelong challenge

“You need to be stronger”

This one really sticks in my craw.  It was said to me quite a while ago, by someone who barely knows me, and knew very little of our family situation.  Oh, and they were also intoxicated lol.  It didn’t make it sting any less.  No one knows what all goes on behind closed doors, not even the people who think they know.  During the time in our lives when this was said, I can now confidently say that I was stronger than I ever could imagine being and moving heaven and earth for my family even with lots of resistance from other members of the family.  I handled the situation, quite frankly, beautifully.  Not that I did a beautiful job all the time, but trust me, if you knew the reality of everything I was facing, you would never, never say that to me again.  EVER.  I have bad days, weeks, even months.  But I put my head on my pillow every night and fall right to sleep because every single day I know I have done everything I can for my babies.   You try it—you try this life--- and then we’ll talk

Professionalism, Boundaries, and In-Home Therapies

I had a personal experience several years ago that clearly still impacts me to this day.  I worked with a provider where boundaries were crossed, too much personal information was shared and an uncomfortable bond ensued that put my well-being at risk.  That’s me putting it nicely.  In any case, ever since that instance I have remained very careful around other providers, probably overly careful, as I think I finally shook my therapist’s hand (yes, I have a therapist!  I have two special needs kids are you nuts?!?) maybe 4 months ago for the first time after nearly 2 years of work, but it has served me well.

See we have SCADS of providers running around in our family’s situation.  Occupational therapists, speech therapists, special educators, school therapists, many many doctors and nurses, and now just to add a new dynamic to the situation, ABA therapists and techs.  Who are IN OUR HOME.  This throws a whole new wrench into my distancing technique.  I mean I am cooking dinners, folding laundry, cleaning, and doing my job while they are there, so there’s not much hiding on my side.  This is why I have come to appreciate THEIR professionalism even more than I used to, even given what happened in the past. 

I am all for pleasant conversation, I am all for sharing experiences and being friendly, even friendish.  I have provider’s cell phone numbers, email addresses, and we share many pieces of information about the boys, and occasionally even chat when it’s relevant.  You can’t be this deeply into autism, into finding things that work for your child, without this happening to a certain extent.  I am happy to have established bonds with these providers, I am happy that I am able to help my kids without feeling like a bully- you catch more flies with honey- and most of the time that is the god’s honest truth.  The bottom line, at the end of the day though is that these people are here to help my children.  When push comes to shove, my job is not to like these people or get along with them, or to even worry about them.  My job is to advocate for my sons and ensure that they are getting what they need and deserve. 

I have had some great recent experiences with ABA, for which I am extremely grateful.  Nate’s ABA technician has actually really spoiled me for most other techs.  I took it for granted when Nate first started his therapy and up popped two amazing techs who focused on my child and were committed to his success.  We lost one when she went to work at a social skills camp for the summer, but have had the other with us since March, and watching her work with Nate shows me what ABA is supposed to, and can be.  We also recently lost the boys’ actual ABA therapist when she moved, but the new therapist seems great so far and there are no issues. 

But Jack- poor buddy.  His first tech was almost shy with him, and when behavior management is one of the main focuses of the therapy, and your kid is super smart, that’s just not going to fly.  Not to mention that she had difficulty helping him with his math, because she had difficulty completing it herself. At one point he was taught writing the time on a clock backwards (minutes for hours and vice versa).  His teachers actually asked me what was going on with his homework because it was coming back incorrect.  I think they were concerned about my math skills.  This was the first practitioner I have ever asked to leave in my almost 6 year autism journey with Jack.  The fight to get these services was no joke, and I was not going to stand by and worry that he wasn’t getting what he needed.  Meanwhile, it took nearly 6 weeks to get a new tech.  Which is where we are now- one month into working with Jack’s new tech.  Who, when she is with him, and focused on HIM, is excellent.  But those are the two current issues, and they are HUGE.  Since July 6^th  when she started, there have been 4-5 absences and 2 significant latenesses (like over an hour).  I have been as empathetic to this as I possibly can, as I of all people understand that unexpected things happen- but at the same time, this is about JACK.  And when every session becomes about the professional, and the things happening in their life, that is not beneficial to my son either.  He should not know about deaths in the family, or pregnancies, or cramping if the tech doesn’t drink enough water.  When he has a meltdown, and I am reeling and he is reeling, my primary concern should not be that she is cramping and blaming my son’s behavior for this.  I do not need to hear that she is going to the ER to get “checked out”, when the extent of my son’s aggression involved “ramming” her with his bike that still has training wheels (by the way, he is not capable of RAMMING, he is barely capable of forward movement while pedaling due to gross motor weakness- and I was standing right there, and that is NOT what happened).  

We signed up for ABA therapy- I went through MONTHS of fighting to get this therapy into place.  I can’t even express to you how stressful this has been at times, how many phone calls were made, how many times I broke down sobbing because I didn’t think I could make it happen.  So when my child is in the throes of behavioral issues that are part of an “extinction burst” of behavior brought on by increasing demands (which are actually positive things- in the long run anyway), I want to be able to worry about HIM.  Not how his practitioner will react, or whether it will be too stressful physically or emotionally for HER.  You don’t train to work in ABA and pretend this type of behavior is not going to happen.  This is the reason for DOING the therapy.  I am at a crossroads with this right now- I don’t want my son to miss any more therapy, but our house is already full of the drama that having two children with autism brings.  We don’t need added stress.  This therapy is supposed to help.  And help US- not give his practitioner a place to come to vent about her life.  I really feel that we need a new tech- again, but is asking for this going to make him miss MORE sessions?  He’s already missed so many because of our previous experience. 

Bottom line- this sucks. Oh and also?  BOUNDARIES PEOPLE.  Know them, respect them, don't overstep them.  

Autism, ABA, and Insurance (oh my!)

We have had some harrowing experiences with insurance coverage over the past few years.  I think any autism parent can say that.  I do, however, have a unique perspective since I work as a nurse case manager for an insurance company.  

When I worked in the hospital, I adopted the whole “evil insurance company” mentality, I will admit.  How did I find myself working for an insurance company you ask?  For me, it was a matter of family- not working weekends, holidays, nights, having a regular schedule, and gasp….making more money.  Oh, and working from home.  Understand I would not have stayed at this job for coming up on 9 years if it was not also intellectually challenging, and if I didn’t come away with the feeling that I have helped someone significantly pretty much every single day.  Anyway, enough about me.  What I have found over the years is that this whole insurance “vs” (for lack of a better word) medical provider relationship is MUCH more complicated than most people could ever realize.  And while it’s so much easier for us as patients to lay the blame on the insurance company, it so often isn’t the case. 

For a few days last week, I thought this philosophy was coming back to bite me.  My husband’s employer does their open enrollment in June and the new insurance starts July 1^st.  I should start by saying that when my husband was offered this position, we vetted the health insurance plan almost more than the actual job, and it was just as important, if not more so, than salary.  The insurance was amazing, with a few small exceptions, and it really did influence our decision to make the change.  And for the first time ever, my sons were able to get ABA.  If you follow my blog on Facebook, you know just how amazing this has been, especially for our younger son.  We are seeing so much progress, and we only started ABA back in March.  So when rumblings started that they would be switching insurance providers, my mind started going a million miles a minute.  I asked John so many questions that I am sure he was ready to muzzle me (no comment John, no comment).  I am sure I am obnoxious, but it’s with good reason.  I can’t even begin to explain how many hours I spent filling out assessments, asking for letters from different people, faxing, oh did I fax, and calling the autism care coordinator (and constantly slipping in the fact that we work for the same company).  It paid off, and the team we have in place is amazing.  The idea of possibly losing that- I couldn’t even bear to think about it.  Luckily, when we found out who the new company would be, I ran it past the ABA company coordinator and she said she works with them frequently- so I tried to breathe.

And then last Thursday John had his open enrollment meeting.  And he texted me that everything looked good, except….a small passage in exceptions:

“non-medical counseling or ancillary services, including but not limited to custodial services, education, training, vocational rehabilitation, behavioral training, biofeedback, neurofeedback, hypnosis, sleep therapy, employment counseling, return to work services, training, educational therapy or nonmedical ancillary services for learning disabilities, developmental delays or autism”

Knife in my heart.  I will admit it, I initially freaked out at John.  I try to stay calm, and I usually do a pretty good job, but when it comes to the boys….yeah, I suck at it.  God bless him, John emailed the HR rep, even sent her a copy of the habilitative services mandate for Maryland.  I couldn’t just sit there and twiddle my thumbs, so I scanned the entire document, emailed it to the ABA coordinator and she confirmed my fears- this was an “autism exclusion clause”.  Which basically meant NO coverage for autism.  Not just aba either- we are talking taking major steps back and not even getting occupational therapy for autism.  We would likely be able to get limited sessions under the “rehab” heading if we used the diagnosis of developmental delay, but that’s it.  This is right where we started when Jack was 3.  Nightmare. 

I think the biggest question you are probably asking is how this is even possible if there is an autism services mandate in Maryland.  It’s tricky.  Here is a link to some information from pathfinders for autism, which is a great organization that literally helps you find your way through this ridiculous system.

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

Crucial information for parents:

“Maryland lawmakers approved a Bill in 2012 requiring that coverage for autism treatment be clarified by regulators under Maryland's existing Habilitative Services Mandate. The regulation was finalized in March 2014. Only insurance plans regulated by Maryland law are subject to the Maryland Habilitative Services Mandate.”

Read that again- only insurance plans regulated by Maryland law. 

Plans Covered
• Individual Plans purchased in Maryland
• Fully Funded Plans purchased in Maryland
• Plans purchased on the Maryland Health Benefits Exchange (ACA/Obamacare)
• The MD State Employee Health Plan - currently complies with the Habilitative Service Mandate
Plans Not Covered
• Federal Employee Health Plans
• Medicaid
• Military Health Plans
• Employer Self-funded (Self Insured) Plans

They even have a link where you can answer a bunch of questions to try and determine if your child will have coverage.  So here’s the thing- my husband works for a LOCAL government, so we should have been fine right??? WRONG!  When I went back and looked at the paperwork, I saw that this insurance plan was purchased through something called an LGIT or local government insurance trust.  And guess what, because they formed this trust, and purchased the plan from them and not "locally", the plans are considered “self-funded”, and the regulations do not apply.  That does not mean they cannot provide the services, it just means that they aren’t obligated by law.  Military health plans, for instance, have some of the best ABA benefits money can buy (and for what the military is paid, they SHOULD).  But take the self-funded thing, add it to the autism exclusion clause, and you have a recipe for disaster.  And one hysterical mama!

How can I explain how my day went down last Friday?  Well first, I took a half day from work because Nate had an IV infusion (not covered by insurance, ha) first thing in the morning.  Which was the smoothest part of our day.  I dropped him off at Cisco Center after this, where he would catch the bus to school (he has had this infusion multiple times and never has a problem) and headed home to log into work  where I found the happy email telling me that ABA would be excluded from this policy and offering suggestions of possible grant sources (which if you follow me, you know I have exhausted for other services).  Cue the hyperventilation.  I called the HR representative- I was kind as could be- but I am not going to lie, I was sobbing the entire time.  About 30 seconds into the conversation I was 100% convinced that my husband’s company truly had no idea that these services would be excluded.  They know the boys are on the spectrum, and this is a small (think 35 people) organization.  This was not done purposefully; they had tried to mirror the benefits they had with the previous company.  In my opinion, this trust seems to offer these small organizations insurance plans, promising huge savings, and ample benefits, while leaving these services, that not a ton of people need, out to save themselves some money.  And while not a lot of people may need the services, the ones who do REALLY need them.  The trust is who picks and chooses the benefits they want the insurance company to administer- so it wouldn’t matter how many times we appealed the denial of these services, if the insurance company wasn’t instructed to provide these benefits, they couldn’t.  I had to explain this to my husband who had the same instinct as most of us, which was to scream “Cigna sucks!!!”  Nope, they provide ABA beautifully when the trust says, include this benefit.  It’s not their choice. 

So about 10 minutes after I got off the call with HR, I decided to put my head down for about 5 minutes to try and calm myself down.  As in, I set my phone alarm for 5 minutes and did some deep breathing.  When I opened my eyes, I had missed TWO calls from Jack’s school.  I called back and the health room assistant informed me that Jack had two hives on his arm, and did I want to come get him?  Ummm, how about some calamine lotion instead??  Sigh.  So I focused on work, started getting a little bit done, it’s about, hmmm, 1:30 by now.  And the phone rings.  It’s Nate’s school.  He fell asleep on the bus and is completely out- could I please come get him?  REALLY??????  I was honestly looking around for a hidden camera at this point.

On my walk into the school, I got a call from the HR rep.  And just as simple as that she said I want you to know that we are having the language in the policy changed- these benefits will be covered for your boys.  I am not the least bit ashamed to say that I burst into tears and literally told her that  I loved her and was going to send her flowers.  Not the least bit.  This woman made a few phone calls and prevented all of my children’s progress from going down the toilet.  She is my hero.  I picked up Nate, sobbed on the teacher’s shoulder for a minute, took Nate home (where he slept another 3 hours) and tried to finish work between hiccups. 

The morals of this story?

  1- Be obnoxious to your husband if he is the insurance policy holder.  Ask him a million questions and make him paranoid.  Why?  Not because you don’t trust him, but because it works!  The fact that John looked at the benefits summary so thoroughly, spotted the clause and knew enough to point it out, saved our boys' services.  Because finding the problem during open enrollment?  It’s fixable.  Now, we have the extreme luck of being in a small organization- had it been my husband’s previous job he would have been one of 6000 and we just would not have mattered that much.  But this employer also wasn’t offering benefits through a trust either, and would have had to comply with the mandate.  Bottom line is that had John not had the wherewithal to point this out to me, if we had missed this, the problem would have been much, much harder to fix.  husband=hero.

2- If you have questions or concerns about coverage, take them directly to your current care provider- at the end of the day, they want to keep you as clients, paying clients.  And they will give you a straight answer.  The ABA company also is a hero in this situation because my concerns were confirmed and made me more confident in speaking up.

3- Don’t blame the insurance company (not all the time anyway- I am still pissed that I have to take one of my meds twice a day because they won’t pay for extended release) - they are administering the benefits they are instructed and paid to administer.  The decisions are often made by your employer, or a trust, or the government.  The insurance company is the messenger in many of these cases

4- Don’t mess with this autism mama!!!!  I mean business!  And I am getting smarter and savvier everyday- so there!