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!

A Post Of Gratitude

This weekend my family has experienced a degree of support and love that we never expected.  I can't even begin to express how thankful we are, and how loved we feel.

For autism awareness month, one of the local service dog organizations ran a "contest" for a grant for an autism service dog.  The award is $10,000 toward the dog and it's training (note that the total cost is $18,000, so we will still have some work to do if we win).  I filled out the application and had Jack color the picture they asked for the applicants to color- this is torture for a kiddo who hates fine motor activities, but he did give it his all.  I sent everything in and hoped for the best.  All the sudden last week, Jack's picture, and several others appeared on the service dog website and it was announced that whoever got the most votes would win the grant.  I had no idea going into all of this that the decision would be based on "votes".

On Friday I started an event on facebook "Vote for Jack for a Service Dog Grant".  John and I invited all of our friends, and added it to a few groups, I reached out to a few fellow bloggers who shared our invite as well.  We hoped to get some votes.

We could NEVER have imagined what would come next.  As of right now, with all of the people family and friends have invited, there are over 4800 people invited to this event, and we have had over 1400 votes for Jack.  If you haven't voted yet and would like to, just follow the link below (you do have to be a member of facebook) and "like" the first picture, which is Jack's.  It is the black dog with the orange collar.  Voting is open until Friday and we can use all the help we can get as the competition is close!

https://www.facebook.com/servicedogswarrenretrievers/posts/864690363601636
As a family with two kids with autism, we sometimes feel isolated.  We feel like many of our struggles go unnoticed, or that people just can't understand what we are going through.  Even though these facts remain, I have to say, this outpouring of love and support for our family?  It means the WORLD to us.  Just everything.

We have not told Jack that the contest is occurring as we did not want to get his hopes up and have them dashed.  But....his birthday is tomorrow.  What a fabulous thing to possibly be able to share with him later this week!!

Here is a little more information about the purpose of autism service dogs:

• To help prevent the child from wandering or running away.
• To help with self-soothing during melt-downs. The tactile stimulation, whether by petting, hugging, or having the dog actually lie on the child, can help the child learn the skills of calming themselves.
• Socialization (including serving as a "social bridge", so as children and adults come over and ask about the dog, the child with autism is prompted to answer. The parent should not answer questions, but should refer all inquiries to the child. Thus with the dog, rather than having just the parent or teacher try to bring the child out of their own world, the entire community is talking to the child.)

A long-term study of service dogs and children with autism reported:^[3]

• “Highly significant increase in pro-social behavior with a parallel decrease in self-absorption."
• "Fewer autistic behaviors - examples include clicking noises, repetitive spinning or jumping or hand-posturing (stimming), and bolting or roaming."
• "More socially-appropriate behaviors (such as reaching up for hugs, frequently imitating the therapist's actions, joining or initiating games).”

Autism Assistance dogs can be trained to help keep the child safe. With tracking the family is able to quickly find the child if they wander away and can't be seen. With tethering the family is able to enter the community with their child who has Autism safely. The parent is always in charge of the dog.


Thanks for helping our family, and most of all, our Jack!!!!

Our NIH and Aricept Journey with Nate

I have had a few people ask me if Nate is ok, so I wanted to post quickly to say YES!  He was in the hospital at NIH last night as part of a study he has been participating in for the past 18 months.  Yesterday was his last of 5 comprehensive appointments (and I do mean comprehensive!!!).  The trial was testing a drug called Aricept, which is traditionally used in Alzheimer’s patients, in children with autism.  One of the commonalities that have been identified in kids with autism is shortened REM cycles during sleep.  It has been proven that in our little ones, lots of brain development occurs during deep sleep.  The hypothesis is that Aricept will help increase the length of the REM cycles (IE the amount of this deep sleep), helping promote brain development, and hopefully leading to increased language/communication. 

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/trials/childrens-studies/the-dreme-study-a-trial-of-donepezil-for-rem-sleep-enhancement-and-improvement-of-asd-core-symptoms.shtml

I was all for this study when we began, and I stand behind my decision to participate.  That being said, what sounds “reasonable” when you are starting can quickly become quite overwhelming.  The study visits were not frequent- approximately every 6 months (except while he was taking the medication, when it was a bit more frequent), however they were extremely intense and had Nate and me leaving feeling like a dish rag that was rung out, crumpled into a ball and hurled down the stairs (not to be dramatic, lol)

Each visit entails about 4 hours of developmental testing- the Mullen Early learning scale, the ADOs, if you are an autism parent you are very familiar with these.  That doesn’t make them any less painful, but you are familiar.  I also sit with the team for a good 2 hours and answer questions (think rating aberrant behaviors, giving a number to measure the progress of his eye contact and answering to his name, etc.).  Then after the kiddo is completely fed up, I am put in a room and told to “play naturally” with him for 15 minutes.  HA!  After that is inpatient registration, admission to the hospital and EEG lead placement.  That is one of the more painful parts, as you have to keep your child still to have MANY electrodes glued to their head and then “blown” dry with puffs of air.  For a child with sensory issues this is NOT an easy task- letting someone hold his head, especially near his ears, hold it still, blow air near his ears, not fun.  The first time we did this with Nate, he was able to stay unrestrained for the full placement.  As we have moved through this process it has become more difficult- could be one of two things- 1- he is wise to our game and isn’t putting up with it, 2- he is more aware of what is going on with his surroundings and more distressed by it.  I tend to think it’s a combination of the two.  In any case, we have used a papoose restraint the last few times.  I made the decision to just put him in it from the get go yesterday- the faster the process goes, the sooner he will be done.  He was actually quite calm.  The research team is incredibly supportive and literally holds your hand through this whole process, and your child’s.  The neurologist has practically stood on her head to get Nate’s iPad at the appropriate angle so he could see it during the lead placement, and she stays the entire time, as do the research assistants- you will see one lounging with Nate below.

After the leads are placed, he has an awake EEG that just measures his regular brain activity.  Then we head downstairs for an hour or two to eat and wait for bedtime.  This is when I am reminded of how blessed we are as a family, as the inpatient pediatric unit at NIH houses children with a multitude of issues, the main commonality is that they are more severe than what we are dealing with.  Yesterday Nate’s nurse was giving another patient a bone marrow transplant (brought back memories of my BMT nursing days!), the patient next to us was 4 and not yet sitting up (and had come from Germany seeking help), and we came face to face with a small child with gray hair and wrinkles (and in a wheelchair).  Sometimes, we all need to see and hear about people dealing with these difficult and life threatening issues to see the blessings in the fact that although yes, Nate is running laps and yelling all day long and can’t tell me exactly what he wants, he CAN run, and he CAN yell, and he knows what he wants.  That is priceless, and something I try not to let myself forget.  But life gets in the way and we all get caught up in our own issues.  Even though I am a nurse and speak with patients with serious medical issues daily, face to face contact really is different.  Nate’s survival is not in question.   This is so crucial to remember.

Anyway, it’s good to get this perspective BEFORE the sleep study begins lol.  Nate always goes to sleep like a champ, and stays asleep for a good 4-5 hours (last night was almost 6!).  But when his normal half waking period in the middle of the night happens, the trouble begins.  He will turn and kick, which he does at home, only now he has electrodes and leads on both legs, and electrodes on his chin (which they place after he falls asleep).  No matter how many times he starts to fall back asleep, and believe you me, we rock, we sing, I massage his legs, I rub his back, and I beg…..he just can’t get back to sleep.  He was up at about 2am, fully awake at 3am.  At 4 am, Rajiv, our wonderful tech popped in and asked me what I thought.  I told him I knew the jig was up- he laughed and said he always knew that when Nate’s legs start kicking, it’s all over.  So then we went through the process of removing all the electrodes (at 4am) during which time it became painfully clear that Nate’s frequent approximations of *uck are not at all coincidental, sigh.  As Rajiv put it, I WAS hoping for language, and I know I said at one point I didn’t care anymore if it was all curse words, at least he would be communicating.  Guess he took that literally- freaking autism, lol.

Saying goodbye was surprisingly hard this morning.  The doctors, techs, psychologists, research assistants, etc. (even our nurse on the inpatient unit) have been following Nate for 18 months.  Nate has done a lot of growing during that time.  I don’t think his assessments are going to show his progress, after all, the fact that he now requests bubbles with “more bubbles, again, now, go” , pointing, and physically pushing the researcher back to the bubbles, as opposed to requesting bubbles with just “more” in the beginning still “tests” as requesting.  I frankly don’t care.  Because I see it.  And I know that the people doing the assessment see it- and that’s all that matters to me.  The subtleties of his improvements may not show up on paper, but they have made a tremendous impact on his and our quality of life.  We will take it.

I would highly recommend that if you or a loved one has a medical condition and you are feeling at a loss, you contact NIH.  We have been to many doctors, facilities, and research groups at this point (Kennedy Krieger, Hopkins, Children’s National Medical Center) and by far, NIH has been the easiest to work with.  They are appreciative of your time, they are respectful of your family, and seem genuinely concerned for their subjects’ well-being. That just can’t be said for everyone out there.  

When we said goodbye to the neurologist this morning, she told us that if Nate ever has any neurological testing ordered by a physician, we should contact them first before going to another facility.  If they can fit him in, they will do any EEG’s or sleep studies he needs there.  Because then they will have even more longitudinal data, and Nate will be in a familiar environment.  Rajiv also said he would see us in 10 years when they had finally put more of the “pieces” together and could recognize any of the, as of yet, unidentified abnormalities on his eeg (there is abnormal brain activity, just not seizure activity).  I have no doubt that if anything that could help Nate comes up, they will get in touch.  That makes every single minute of holding my breath and begging my son to go back to sleep 100% worth it. 

Choices, Chances, Changes

I really don’t have time to be writing this at this stage of the game, but I almost need to.  I need to process how after years of being an “autism warrior mama” so many things can be changing all at once, leaving me feeling like “the new kid” all over again.

That’s the thing about autism, since there is no “right way” to parent, or seek treatment for our kiddos, and there is no “end game” involved either.  There is no, ok, well we sought “treatment” or “therapy” and now we are all set.  Nope.  There is always something different that can be tried; there is always someone over your shoulder making suggestions.  And no one is right, but everyone is, because no one really knows.  In some ways, it’s positive, because there are always other avenues to explore if what you are doing isn’t working, but, there is always that feeling of not knowing what you are doing, and if you are me, always feeling like you aren’t doing enough.

Tomorrow is the start of some huge changes.  Nathan has finally been approved for ABA- starting tomorrow we will have therapists and techs here 8:30-11:30 am Tuesday, Wednesday, and Friday, and 4-6pm Tuesday-Friday.  Jack is right behind Nathan, and will be finishing his ABA evaluation on Thursday.  For Nathan that means a lot less down time, and less time at Cisco Center, which has been a huge part of his life for the past 2 years.  As I said to Cisco over the weekend, this is not a reflection of our opinion of Cisco Center, this is just me, as a mom, trying absolutely everything I can to help my son.  But that doesn’t make it easy, for Nate, or frankly for me.  This will change everything about our day to day life, from my schedule while working from home, to cleaning the house, preparing meals, to getting Nathan on the bus for school (I will need to drive him to Cisco center after lunch as that is where the bus picks him up).  My “guess” is that Jack will also end up with daily ABA 4-6 pm, after school.  Talk about crazy afternoons!  It’s worth it, and they deserve it.  It’s just more change.

Add to that the fact that Nate’s transition IEP meeting is this Thursday.  There will likely be about 12 people, in a room, reviewing all of his progress or lack thereof, and deciding where he will go to school next year.  I am pretty confident of what the decision will be, and I agree with it, but that doesn’t change how extremely emotional it is.  Because beneath this exterior, I am still that mom who wishes more than anything that I could put my little guy on the regular old bus with the neighbor kids and send him to kindergarten like most parents do.  There are several kids on our street who are the same age, and I will be watching them go next year.  It’s just all hard.  None of this is easy, and contrary to what people have told me a million times, it doesn’t get easier.  It gets harder

We are also working on new medical interventions for the boys, new supplements, dietary changes, the “usual”.  Jack has several medical consults coming up.  Nate still needs to complete his final NIH sleep study, as we had to cancel it last week when he was sick.  Jack’s IEP meeting is April 9^th, this year has been rough for him at school, and I don’t feel he is getting the support he needs.  His new BCBA and an educational advocate will be helping me prepare for this meeting.  I love his teachers, and his special educator, but I am seeing changes in him that concern me, increased anxiety, increased behaviors, and an inability to keep up academically. 

So in a nutshell, I know we are doing “the right things”.  But I feel like I am living in a pressure cooker over here.  There are days in life when all you can do is focus on “walking through” all of this.   Never in a million years did I think that there would be this many people involved in the raising of my two children.  Never in a million years did I think that I would have no idea what to do for my own kids.  But here I am.  I am extremely fortunate to have all of this support coming for the boys- but I am overwhelmed.  I think I need to seek some more support for ME.

Development In Slow Motion

As parents, we celebrate all of our children's accomplishments.  In the beginning, with Jack, I was completely clueless.  He was such an early talker, and as a first time mom, I was oblivious to the fact that other kids weren't developing at the same rate- until I took him to playgroup, where he would want nothing to do with the other kids, but would talk "at" all of the adults in full sentences, at 18 months.  And the other moms would say things like, "excuse me while I go kill myself".  My little boy genius.  It took awhile for me to realize that he did not truly understand most of what he was saying.  To this day, scripting is a huge part of our lives, and people who don't know him too well say how brilliant he is.  Which he is.  But that's not why he is spouting those facts out rapid fire every day.  That is his comfort, his script.

Watching him learn how to read this past couple of years has been absolutely amazing.  I now have a different point of reference, Nate.  And watching Jack learn how to read is in many ways like watching him learn how to talk all over again.  I just have a whole different level of appreciation for my kids' accomplishments these days.

Nate's development, like many kids with moderate to severe autism, has been such a roller coaster.  Two steps forward, five steps back, another five steps back, four steps forward, and then freeze frame, repeat.  My level of fear far outweighs my need for hope at this point- to put it another way I am absolutely AFRAID to hope.

At some point though, you have to make a decision.  Are you going to live your life feeling this anxiety, or are you going to do everything you can to put that fear aside and allow yourself to enjoy these positive moments, however fleeting they may be?  Can you allow yourself to enjoy your child saying new words when you know they may never say them again, or they may disappear tomorrow?  Well, it's really really tough.  But you have to find a way.  Right?

I am trying really hard to do this.  When I first started this blog, I would jump on when Nate would start saying new words, and say things like "I hope this is it!"  Maybe you haven't noticed, but I have stopped doing this.  It's too scary.  It's never "it".  I don't think there is any such thing anymore.  I don't believe anyone who tells me Nate's speech is just going to "take off."  John and I sit and talk at night about how weird it would be to have Nate walk up to us and just start talking.  It would be freaky at this point (don't get me wrong, I would get over it)

He IS developing though.  He really is.  It's just in slow motion.  The accomplishments are things that with Jack, I never even noticed.  But they are there, and now I have to admit it.  It is absolutely fascinating.  For instance, Nate is obsessed with peek a boo right now.  And it's not the object permanence thing, it is the interaction piece.  He LOVES to see your reaction, to be surprised, to do it again and again.  This may seem like a small thing, but it is not.  It is Nate realizing his actions can have an impact, that he can affect his environment.  Yesterday he hid behind my bedroom door when it was time to go downstairs in the morning.  I found him laughing hysterically, hiding.  He knew he was going to surprise me and was anticipating it.  Now, he is super interested in doors- he stood in his bedroom this morning opening the door, looking behind it, closing it, getting down on his knees and looking under it.  It's like it's the first time he has ever realized the impact of a door, even though he has been opening and closing them for a long time.

Watching Nate finally notice his environment like this-  it's just crazy.  When Nate hits a milestone like this, my joy almost happens in reverse.  It's like- wait, oh my gosh, I never even realized he wasn't noticing this before.  I can't believe he wasn't noticing this before!  But wait, he is noticing it now!  And for now, that is enough.  

The Measles Outbreak: A Reality Check

     

Disclosure:  I have two children with autism, they are both fully vaccinated.  I believe that vaccination is hugely important and my children WILL be vaccinated.  I don’t want them to die of a disease that could be prevented.

Guess who is not fully vaccinated in this family?  Or at least is more likely to be an issue.   ME.  And my husband.  In your family, it’s likely YOU.  Why? 

http://www.usnews.com/news/blogs/data-mine/2015/01/26/whats-really-behind-the-measles-outbreak

Two doses of vaccine were not recommended until 1989 – meaning that anyone over the age of 26 today may not have received a booster. Orenstein says the CDC for this reason advises adults traveling outside the U.S. get an MMR vaccine.

According to an article in the Journal of Infectious Diseases, people who were not in the targeted age group went unvaccinated, leaving a gap of people in older age groups who were not protected. "The major problem with measles in highly vaccinated populations occurred among middle school, junior high school, senior high school, and college students," the article read. "The quickest way to eliminate that problem would be a mass revaccination campaign of all such students. This was considered too expensive and logistically difficult to carry out."

Orenstein says the reason public health measures focus on vaccinating younger children is because they suffer the most severe consequences of measles. This approach, however, means some adults could have been missed during that time period. "What I wonder about are these people who fell through the cracks," Orenstein says

Here, directly from the CDC website:

http://www.cdc.gov/vaccines/schedules/downloads/adult/adult-schedule.pdf

Measles, mumps, rubella (MMR) vaccination

• Adults born before 1957 are generally considered immune to measles and

mumps. All adults born in 1957 or later should have documentation of 1 or

more doses of MMR vaccine unless they have a medical contraindication

to the vaccine or laboratory evidence of immunity to each of the three

diseases. Documentation of provider-diagnosed disease is not considered

acceptable evidence of immunity for measles, mumps, or rubella.

Measles component:

• A routine second dose of MMR vaccine, administered a minimum of 28

days after the first dose, is recommended for adults who:

—— are students in postsecondary educational institutions;

—— work in a health care facility; or

—— plan to travel internationally.

• Persons who received inactivated (killed) measles vaccine or measles

vaccine of unknown type during 1963–1967 should be revaccinated with

2 doses of MMR vaccine.

Mumps component:

• A routine second dose of MMR vaccine, administered a minimum of 28

days after the first dose, is recommended for adults who:

—— are students in a postsecondary educational institution;

—— work in a health care facility; or

—— plan to travel internationally.

• Persons vaccinated before 1979 with either killed mumps vaccine

or mumps vaccine of unknown type who are at high risk for mumps

infection (e.g., persons who are working in a health care facility) should

be considered for revaccination with 2 doses of MMR vaccine.

Rubella component:

• For women of childbearing age, regardless of birth year, rubella immunity

should be determined. If there is no evidence of immunity, women who

are not pregnant should be vaccinated. Pregnant women who do not have

evidence of immunity should receive MMR vaccine upon completion or

termination of pregnancy and before discharge from the health care facility.

Health care personnel born before 1957:

• For unvaccinated health care personnel born before 1957 who lack

laboratory evidence of measles, mumps, and/or rubella immunity or

laboratory confirmation of disease, health care facilities should consider

vaccinating personnel with 2 doses of MMR vaccine at the appropriate

interval for measles and mumps or 1 dose of MMR vaccine for rubella.

Now, tell me, have you all followed this guideline?  I am a nurse right?  I worked in a hospital for the first 8 years of my career.   I had to get my hepatits B vaccination as part of being employed; I had to get TB tests annually.  I was expected to get the flu shot.  No one checked my titers for measles, mumps or rubella.  And for people in my age range, we should be checked.

“Anti-vaxers” are to blame right?  Did it occur to you that you may be a big part of the problem too??  I think there needs to be more education about this issue. 

On “anti-vaxer” parents:  I disagree with not vaccinating your child.  I do.  I have done a ton of research as a mom, and even more as the mom of two boys with autism.  The benefits do outweigh the risks.  If you are worried about your child having a reaction, there are measures you can take to help “shore up” your child’s immune system, to protect them the best you can.  And you can spread out vaccines (although not the MMR which is no longer available in separate doses-  http://www.askdrsears.com/topics/health-concerns/vaccines/separate-measles-mumps-rubella-vaccines-longer-available-can-parents) .  Which I believe is fine- as long as you take the time to follow through.  I have a good amount of medical knowledge, both professionally and of course personally.  Even with all of that information, my education, and my experiences, I have found myself questioning the norm.  And I have had numerous medical professionals tell me the norm is wrong, I have had professionals tell me that my son is vaccine injured.  Literally told me that.  Once again, I am well educated and have a very hard time swallowing all of the conflicting information.  Imagine how those who have less information and are hearing these statements must feel. 

What pisses me off is the holier than thou people out there that slam anyone who questions the status quo.  And I mean- Pisses.  Me.  Off.  Most of these parents do not have children with autism or other health issues, in my experience. It’s easy to judge when your toddler is running around you saying WORDS and going to regular preschool.  When you haven’t had a professional tell you that vaccines have affected your child negatively.   I have come so close to defriending some people who are otherwise dear to me lately because I can’t stand the snide posts that are constantly in my news stream.  I have chosen to block their posts instead, we all have our opinions, and I can love you and not agree with you.

I have kept my mouth shut to this point because I feel like I will be attacked no matter what I say.  But screw it, I started a blog to express myself, and this is how I feel.  Before you go attacking parents for not vaccinating, look at the facts above, we, as parents, are being infected MORE than our children.  We are more responsible for this outbreak spreading than any unvaccinated children.  Get your titers checked people.  We are just as much to blame for this situation, if not more so.  So yes, kids need to be vaccinated, but so do we.  It’s much easier to blame the problem on others, to single out one group, especially when you disagree with them to begin with.  If only it were that simple.