Monday, 28 October 2013

Happy Feet and Autism- There's a Story There

I would like to talk about the movie “Happy Feet”.  Consider it a preview of future events as Nathan is going as the penguin “Mumble” for Halloween and he will also be having a “Happy Feet” birthday party…after reading this post, you won’t have to ask why, that’s for sure.

I love this movie, and I would ask that each and every one of you who reads my blog and hasn’t seen it pulease go out and rent/buy/stream it whatever you have to do but please watch it.  It’s not just me who loves this movie; Nathan has always had a real affinity for it.  There is a lot of music, a lot of movement, yes, but that could be said about pretty much any kid’s movie.  This one, he loves it. 

The story is going to sound pretty familiar.  A little penguin hatches to two very proud parents and from the word Go it is apparent that he is “different” from other penguins.  He tap dances around all the time (stimming?) His mom and dad are worried, but he “looks” normal, and they send him off to school, where the teacher discovers that he cannot sing.  A penguin’s “heart song” is the way he communicates, the way he finds a mate (penguins mate for life).  And Mumble (yes Mumble) can’t communicate the way all of the other penguins do- instead, he communicates by dancing.  The teacher declares him a lost cause (I believe she says that a penguin without a heart song is hardly a penguin at all?  Cranky b-word) and mom and dad take him to a “specialist”, who says much the same. 

 He is not able to graduate with his peers, he is treated as “less than”.  His father is embarrassed and has a very difficult time accepting his differences, his mom thinks he’s perfect the way he is.  He becomes an outcast- but in the end, his differences end up saving the penguins as he finds a way to communicate with humans and save the fish supply that the humans have been consuming.  He becomes a hero. 

It’s a wonderful story, and I don’t even know if it was meant to be “about autism”, but the bottom line is that for any autism parent, the theme really resonates, and the way the story unfolds hits very close to home.  Mumble reminds me so much of my Nate.  It’s not just that he is different from his peers, it’s his view of the world around him, the way he accepts himself and if anything, seems oblivious to the fact that others may not see him as “normal”.  He is happy, he is in his own little world, and he sees nothing wrong with that.  I believe that Nate is capable of accomplishing great things, which is why I never stop pushing forward in this fight.  That being said….he is happy right now, just as he is.  Of that I am sure.

At the end of the movie, Mumble has the rest of the penguins dancing HIS dance, including his parents.  It is incredibly moving to me, and it makes me wonder, are we missing something?  We all know of people with autism who are considered “savants”, who visibly have a talent or skill that none of us can comprehend being able to accomplish.  There have been interviews with people on the spectrum who report that medications have “helped” them with speech, communication, day to day functioning, etc., but that they could no longer play the piano with the same skill they once had.  Any parent that lives with autism on a daily basis must contemplate this from time to time- why are our children the way they are?  Is it truly a “disorder”?  Is there a higher purpose?  And if so, why are we, as a society, so uncomfortable with all of this?  We are so concerned with our children conforming at times that we (including me) fail to remember the wonderful things that they bring to the table.

 Nathan has taught me more about the meaning of love in his 4 years of life than anyone else ever has.  I feel wise through being his mommy, I understand what acceptance is, and I have a broader view of what is important in life.  So many things that felt “tragic” before Nathan now feel more like….eh.  Things that other parents complain about are things that I dream of for my child.  I would kill for Nathan to really piss me off someday by dating someone I can’t stand, or rebelling.  That is my fantasy!  Please sweetie, marry the wrong girl, move in with her first, move to some exotic country and refuse to wear anything but a thong!  I support you 100%!  The thought of Nathan having that kind of independence….it brings tears to my eyes.  Yes, even with the thong in the same paragraph.  So at this point, that is the biggest lesson Nate has taught me- kind of like that book “Don’t Sweat the Small Stuff- And It’s All Small Stuff”.  You have it in writing now son, in case someday you are reading this- whatever your path is in life- go for it- I just pray that you are someday capable of choosing that path for yourself. 

Thursday, 24 October 2013

Nate and the Dog Hair

Poor Riley the dog.....

Two Steps Forward, Twelve Steps Back

None of us ever wants to find out that something is actually working because we have to stop it.  Unfortunately, that is what has happened in our house these past few weeks.  Nathan’s mitochondrial cocktail was getting stickier and clumpier by the day.  I spoke with the pharmacist at the compounding center and he told me to take it out of the fridge.  I did so.  It got much much worse.  It was basically damp, smelled rank, and there was no way it was dissolving in any liquid because frankly it seemed saturated with liquid as it was.  I emailed my contact again, expecting to get another “tip”, but he responded, saying that he had just opened the new batch that he had made to ship to us and found the same issue.  He looked up each of the components in the cocktail and found that it was the L carnitine that was causing an issue- it tends to cling to moisture.  There were two options- take it out of the compound and give it separately (we already have it at home, as that is the one part of the cocktail he was already on) or attempt a liquid.  The liquid would need to be shipped every other week, making the copay double, and shipped on dry ice which is a $27 charge each go round.  Thus, we are trying the new powder.

The good/bad news is that we have noticed a significant difference in Nathan in the time he has been off of the compound.  His stimming is literally through the roof, and as a result we are getting fewer words as well.  He is pulling the hair off the dog, just to watch it float to the ground, and his fingers are constantly in front of his face for further stimulation.  He is ripping paper like a little fiend, and dangling the chain he creates in front of his face.  It’s hard to watch to be honest.  My other concern is that we finished the 3 courses of fluconazole to treat his yeast recently- so if the yeast is returning, that could cause the increase in these behaviors as well.  I picked him up from Cisco the other day and one of the employees commented on how “giggly” he was.  I had to rain on the person’s parade and let them know that when he is sitting by himself laughing uncontrollably, it’s usually a bad sign- could be yeast again.  So I am watching that closely as well.  Right now the priority is the cocktail, and if we don’t see improvement with that, I will call the developmental pediatrician about the fluconazole issue.

Another biggie- tomorrow is Nate’s D day.  He will be starting Aricept.  NIH has continued to be fabulous to work with, they overnighted the drug and we got it on Tuesday.  I am anxious to get going and nervous at the same time.  I can’t take another disappointment right now to be frank.  Watching Nate backslide these past few weeks has been hard enough.  Jack has been having a whole other set of issues, which I will address in a future post- preview- he doesn’t want to do his work, oh and he is pushing a girl.  A lot.   Should I be viewing this as social progress??? Mommy needs a sensory deprivation tank!

Nate's stimmy fingers yesterday....

Friday, 18 October 2013

The Seizure Verdict

It’s been a really long week.  Nothing particularly stressful or negative, but I am feeling a bit weary these days again.  This always seems to happen about 6 weeks after a visit to the developmental pediatrician. We come away with a “new” plan and I get busy organizing and implementing, and spend the next few weeks feeling extremely hopeful.  This time around the interventions with Nate have been pretty positive, the mitochondrial cocktail really does seem to be having some impact.  His speech, while still very inconsistent, is definitely covering a wider vocabulary.  Speech development in autism is, well, it’s just freaking weird.  No offense to my gorgeous son.  I think it feels this way to me because we don’t always know what he’s thinking, or what he’s aware of, or what he actually comprehends.  So when I was getting him out of his jammies this morning and I said “hands up” and he looked at me and repeated “hands up” my jaw dropped.  He won’t say hi or bye, but he will say hands up, and he said his OT, Amanda’s name the other day.  The words that come out are not the basic building blocks that one would expect with developing speech.  Nate has said full sentences, and then nothing for weeks.  The frequency of these bursts of speech has increased on the cocktail without question, and he is not getting the full dose.  The powder the compounding pharmacy supplied keeps solidifying and I find myself chipping chunks off and trying to dissolve them in his juice.  Not an accurate measurement to say the least and it’s not dissolving well so there is always quite a bit of residual in the cup.  I spoke with the pharmacist this week and he offered to send a slightly different formulation.  I agreed, but also told him that if this one does the same thing, I want to change to a liquid- the copay will be twice as expensive, but I will pay that to know that he is actually getting the full dose. 

Ok, getting back to the point.  After the interventions have begun, there is always a bit of a lull- and I feel like I’m not doing enough, and it stresses me out.  It has not helped that we did Nate’s sleep study over 2 weeks ago, along with the EEG and I have had NO results, thank you very much government shutdown.  Now there’s one impact of the shutdown that not many people may have considered- congress let me worry for an extra two weeks about my son’s health status.  I know that we are lucky and many are experiencing huge hardships due to the idiocy in Washington, but to be frank, worry is worry. 

I would like to share a picture with you:

This is the picture of a gorgeous little boy with autism.  A little boy who as of now is seizure free.  The government reopened when, Thursday morning?  The neurologist, who I admire a bit more each day, called me at about 9:45 on Thursday to let me know that Nate’s EEG did not show any blatant seizure activity.  She had not had the opportunity to fully analyze the sleep study.  Remember, we finished it on Monday morning and the government shutdown went into effect that day at midnight.  She could tell me that she did not see any major REM disturbances in the one night of good sleep that Nate had.  She explained that she had been in touch with the research board, and that in order for them to fully analyze and qualify Nate for the double blind portion of the study, we would need to repeat the whole 48 hour ordeal.  She further stated that in light of how the first night looked that she didn’t think it was necessary.  He doesn’t look like a good candidate for that portion of the study.

What does this mean for Nate?  In my eyes, it means that we got really good news intervention-wise.  She offered us participation in the third arm of the study which is the open label trial of the medication.  Basically, there is no chance, if he participates in this portion, that he will receive placebo.  Everyone in this area receives the medication.  If you remember, my biggest concern going into this was that we would go through all of this and eventually find out that he received placebo.  That would suck.  Well, that’s not going to happen.  In about a week, he will start the medication.  He will be on it for 6 months, and then his sleep, and developmental assessments will be monitored for a year after this for any improvements.  This is what we wanted. 

The medication is Aricept- here is the study…

How do I feel about this?  I think my husband put it best.  I called him at work to let him know about the EEG, and we were both happy to know that Nate is not having seizures- and in some ways disappointed.  Not that we want him to have seizures, but we want to find something that we can help him with.  We want to have a tangible something to work on.  We have more answers than we did when we started- which was the point.  Two more pieces of the puzzle that is Nathan are now in place- no seizures, no REM disturbances.  This is positive.  But we know that he has issues- despite the intensive therapies he receives, the progress, compared to that of a neurotypical child (which I know is not a fair comparison, but bear with me), has been slow at best.  I think we both feel that at least if we had something to focus on, we could feel like we are making progress, like we are helping him.  The truth is we are making progress- we are narrowing down the factors that are contributing to his delays.  No, it doesn’t give us something in particular to work on, but eliminates some scary possibilities, and for that I am grateful.  And we will be able to try this medication under the supervision of one of the best physicians I have encountered on this journey.  That is a blessing.  She will be watching over my Nathan- he is a lucky boy. 

Saturday, 12 October 2013

A Typical Car Ride

When you have two kiddos with autism- each with extremely different sensory needs, a simple task like taking a ride in the car can turn into quite the adventure.  Read:  nerve jangling disaster.

The car issues all started right after Nate was born- Jack was about two and a half and almost immediately after I brought Nate home Jack started screaming bloody murder every single time I turned on the turn signal.  How many three year olds become conditioned to, instead of screaming, say “mommy is a law abiding citizen” when mommy turns on the turn signal?  It was the only work around I could think of at the time.

He also went through a period where if I drove past a large group of trees or anything else that generated shade, he would have a complete meltdown about the shadows in the car.  As though I can control that?  And the radio issue continues- it must be turned off before we pull into the driveway or all Hell breaks loose.  And he can tolerate a very short playlist of songs- he used to scream about this as well, but we have worked on him simply saying “skip” if the music is bothering him. 

This doesn’t even cover the whole “driving” thing.  I can’t turn corners unless I do so very slowly or he screams, can’t drive behind certain cars, or let alone buses.  If we are caught in traffic he yells “we’re still moving!!!!”  Speed bumps- they’re bad news.  Jack shouts every time we go over one.  He also notices immediately if I take a different route than usual and this upsets him quite a bit.  I get that he is not doing this to be difficult and feel really bad that he experiences these things so intensely.  I’m just saying- it makes for interesting driving.

Thus far in life, Mr. Nate has been very straight forward.  He cries for one reason when we are in the car- if we stop.  Recently he seems to be noticing this quite a bit more.  In the last week it has escalated, and it’s pretty darn cute.  He sits in the back seat and if I stop or even slow down he yells “go, go, go!!!”  I feel like a sled dog, he may as well shout “mush! Mush!”

Honestly, I try to speed up when he does this, or pray for the green light.  I want him to feel empowered when he makes the effort to communicate with me.  In the mean time between my two kids I am starting to question who is actually driving this car….

Friday, 11 October 2013

A Tribute to a Marriage

In honor of my parents' 42nd anniversary this week I decided to repost this. Love you guys!!!

“Happily ever after is not a fairy tale. It’s a choice.”
-Fawn Weaver

Not many people these days have the privilege of having an intact family of origin.  I am one of the lucky ones.  My parents posted all over Facebook today (what the heck?) that this is the 45th anniversary of their first date.  They have been married for nearly 42 years.  Crazy.  And something to be respected.

What have I learned from watching my parents?  I could lie and say it was something like “true love conquers all” or “ain’t no mountain high enough”, or even “it takes two”.  And that’s all true.  But that’s not the take away message for me.  In a society where most people take the easy way out (my opinion), my parents have toughed it out.  I don’t believe that most marriages that end in divorce are that much worse than the ones that survive.  It’s an issue of determination, willingness to “stick”, to fight for one’s family.  Of course there are always extreme cases when the only safe thing to do is call it quits, but that is not how the majority of divorces come about.

They have not had the easiest of roads.  When I was little, we moved almost every 2 years until I was 11 years old- and no, it was not a military thing, although they went through that too.  My dad’s company transferred their employees frequently.  Then when we finally settled in New Jersey, and my parents had my little sister, who is 12 years younger than me, they were transferred to California.  That was really rough.  There has been much sacrifice on both sides, and there continues to be.  This is not a fairy tale- this is real life- a reflection of two people trying their hardest.

I think it is so important for parents to teach their children a realistic view of what life is.  I have had friends who say my parents never fought, they were always happy, yada yada.  Unfortunately, that’s crap.  No one is happy all the time.  Hiding reality behind closed doors is not helping anyone.  I remember two years ago, I was upset and crying (believe me, I had reason) and a family member (not immediate) exclaimed that I should not be crying in front of my children.  It took all I had to keep my jaw from dropping.  What an unrealistic thing to say!  And frankly, if children don’t learn from their parents that it’s ok to be sad, and ok to cry, who are they going to learn it from?  I think that presenting the world as a continuously rosy happy place to one’s child is not only artificial, but it is setting them up to feel like a failure later on in life.  I saw both of my parents cry when something was really sad or upsetting- I think it molded my sense of empathy for others, and I think it helped to make me the nurse, wife, and mother I am today 

Circumstances in marriage will come and go- people and situations will try to break up one’s marriage over and over again.  It happens to everyone, don’t kid yourself.  Life gets in the way; stress causes tension, bad things happen.  To all of us.  What makes my parents stand out from the rest is that they have been able to maintain the perspective that so many of us lack.  They are able to recognize the bad times for what they are, a storm they have to weather, not the end. 

It seems that our society applies the same rules to marriage as it does to fast food- we want it how we want it, we want it at little cost, and we want it NOW.  And it just doesn’t work that way.  I do not know if my marriage would have survived if did not have my parents’ example right in front of me. 

The longevity of their marriage allowed me to reflect upon the strains in my own marriage in a different way.  I was able to remember dark times in my family of origin- and the work that had to be done to get past these times.  WORK.  Good relationships and marriages are not things that are handed to us; they are things to be worked for.  How easy it would have been for me and John to cry uncle two years ago.  I mean, the statistics basically told us to!!  It’s what everyone expected at that point, and it’s what some wanted sadly, because that is what they were used to.  I think that the fact that we stuck it out, and came out MUCH better on the other side shocks many.  When I think about it, it doesn’t shock me.  Because I watched my parents do the same.  What an amazing gift they gave to their children. 

“In a time when nothing is more certain than change, the commitment of two people to one another has become difficult and rare. Yet, by its scarcity, the beauty and value of this exchange have only been enhanced.”
Robert Sexton
Love you both 

Thursday, 3 October 2013

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

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

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

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

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

Here is what that column said:

Habilitative Services for Children Under Age 19
(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)
Calendar Year Maximum:

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

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

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

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

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

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

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

Only plans subject to Maryland Law are subject to the Maryland Habilitative Services mandate. About one third of Maryland residents’ health plans are regulated by Maryland law. However, residents covered by plans sold in other states or self-funded plans may offer coverage for Habilitative Services and/or Autism treatment.
Habilitative Services information from the Maryland Insurance Administration
So the regulation has been there it appears- but now it’s being enforced.  And God willing expanded upon come November 1st! 

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