Thursday, 31 July 2014

At Least They're Healthy?

My husband and I often sit and have this conversation.  At least the boys are healthy.  And then we look at each other. Well, they are aren’t they?  We, as a community, are discovering more and more that autism is caused, or at least exacerbated/triggered by other physical issues, issues that need to be addressed, so I guess in that way, no they are not healthy.  But autism is not life threatening.  And that is what we are focused on when we have these conversations. 

Something I feel compelled to share is just how well aware I am of how much worse it could be.  My job reminds me of this daily.  I am a transplant coordinator for an insurance company- and yes I know this may sound kind of hands off, but I assure you, it is not.  I work with Medicaid patients, many of whom are pediatric, even infants, and I form strong bonds with their parents.  I work hard to make sure these little guys have what they need, authorization to get to and from their appointments, to receive their lab work, their scans, their transplants, their follow up care, their medications, equipment, you get the idea.  That is the technical part.  On the other side of that is the part where the moms recognize my voice the minute they pick up the phone and start talking, or crying, so fast that I can barely get a word in edgewise.  The part where the parents are looking for, or begging really for reassurance that their little ones will be ok.  Or in contrast, parents who are dealing with the stress through anger and yell at me, telling me I have no idea what it is like to have a child with challenges.  The blessing in all of this for me is that I am on the phone, not in person.  The phone gives me the distance I need to do what I need to do;   to explain the difficult things sometimes- that they will need to wait, or move their child to a different facility, or change medications.  In the end, these children get what they need- they are ill, there is an established treatment for their conditions and once medical necessity is shown, the insurance pays for it.  If it is an experimental treatment it can be a bit more complex, but often the study will actually pay for it, and if not, the insurance does at times cover it. 
And I understand that these are life threatening conditions.  Ok, I get that.  I go through the medical histories, the lab values, the scans, all of it on a daily basis and make medical determinations based on my clinical judgment.  Here is what irks me- this is not even an option for ANY of the medical treatments available for my children for their autism.  How can this even begin to be appropriate?  HOW? 

I believe with all my heart and also with my brain (which, not to brag, but it’s pretty good) that future generations will look back on this period of history with shame.  Well, for many reasons, but particularly when it comes to the autism epidemic and the lack of action taken to help those affected.   Treating autism as a purely psychological condition is not going to just sweep it under the rug and make it disappear.  The numbers keep growing, and it is not being addressed, not by a long shot.  Google autism definition
1.    au·tism/ˈôˌtizəm/
1.    a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Now, I was happy to see at least habilitative services become mandated in our state this year- ie OT, PT, speech, and supposedly ABA.  HOWEVER, because ABA has not been covered by insurance ever in the past guess what??  There is no licensure for ABA’s in our state.  So even though in theory, ABA done by licensed certified therapists is covered, there are no licensed therapists, therefore, none of the kids can actually have it.  Clever, huh? 

Currently, Board Certified Behavior Analysts (BCBA) are not licensed in the state of Maryland (they are certified nationally). However, a licensure Bill for BCBA’s was passed by the Maryland General Assembly during the 2014 session. It is expected that the state will begin issuing licenses to BCBA’s beginning in 2015.
see?  Isn’t that nice of them?  Baby steps. 

Anyway, let’s step even beyond that.  Into the space where autism is being acknowledged as a medical disorder.  You know the space where most autism parents live.  Only now are the mainstream treatments listed above being covered by insurance, and let me assure you, that alone is still a battle- when we finally got the boys’ insurance company to acknowledge that they needed to pay under the heading of habilitative services we both almost cried- it took months.  Even the oral medications that are mainstream medications (used off label for studies) we have tried have been covered by the studies we participated in- we had to pay for Jack’s medication out of pocket when we continued it temporarily after the study ended.  Other interventions that are being used in autism- they are considered experimental for sure, but can’t that be said for many oncology therapies?  So to list a few, mitochondrial cocktails, vitamin B-12 shots (well, we got these covered with a nice small $70 copay), hyperbaric oxygen treatments, IVIG, chelation, supplementation, special diets, glutathione, colostrum, you get the idea.  And what about the homeopathic treatments I have been using with the boys since April- we have seen MARKED improvement in Nate, no question, but the costs are killing us.  These are the “options” given to autism parents.  Other than of course symptom control, such as anti-psychotics, antidepressants, anti-seizure medications, etc.  Those are covered by insurance.  To me, it just seems like it would make more sense to treat the problem at its source than to run around putting out fires (symptoms) all over the place.  But parents are limited in what they can do by their finances.  Parents are asked about their finances before they are presented with treatment options.  There is no insurance coverage for any of it, so if you can’t pay, well, you’re screwed. 

So though it may be so that my children are “healthy” in so much as they do not have a life threatening illness, they do both have a condition that severely impacts their quality of life.  It does affect their physical health.  And unlike any other condition out there, medical necessity is not something that can be proven as of yet, because a cause has not been identified, and medical treatment has not been acknowledged as legitimate. 
Once again I ask, how can we limit treatments for a disorder when we cannot prove what is causing it?  How can we call a disorder “mental” when associated symptoms include GI disturbances, immune dysfunction, eczema, food allergies, and seizures to name just a few? 

Wednesday, 23 July 2014

Our Last Chance For Early Intervention

Last Chance

I received Nate’s ECI (early childhood intervention) assignment for the coming school year in the mail today.  It was nothing unexpected, he is going to the same school he went to last year and the year before, he will just be attending the afternoon session instead of the morning because he is older now.  Yet, it’s been about 30 minutes since I opened the letter and my heart is still pounding, my mouth is dry, and I am on the verge of tears.

Why am I even upset?  I love that my coworker Rhonda is my constant IM companion, because typing back and forth with her is in some ways like self-reflection.  It didn’t take long for me to realize what was up.  It feels like it’s our last chance. 

Last chance for what you might ask?  If you are a fellow autism parent, you know exactly what I am talking about, and ok, here come the tears.  The “window” is closing. 

What is “the window”?

If intervention services are implemented appropriately between the ages of 3 to 5, 20 to 50 percent of children with autism will be able to attend a mainstream kindergarten class. That window of opportunity then, is a small one, and early intervention remains the best option.

Parents ask us all the time about the “Window.” You know that window of opportunity you have to help pull your child out of the world of autism and into our world. Many are worried that the window is either closing or is already firmly shut.

So whether you believe this window is going shut or not, as a mom in the circumstance I happen to be in at this point in time, I am going to think about it.  You see, when it comes to Nathan, I am going to be honest, I did it right.  Jack had been diagnosed very recently before Nate, and I was on high alert.  I didn’t wait until he was two; I barely waited until he was 18 months.  I had him in to Infants and Toddlers so fast it would make your head spin after a brief discussion with our then pediatrician.  I wasn’t taking any chances.  I can’t even count the number of times I heard, you won’t even recognize him a year from now- from teachers, therapist, even our current and much loved pediatrician.  “You caught this so early, and that is the key”.  Really?  I believed them for so long.  Maybe even a whole year went by of me believing before I looked at John and said have you heard new words?  And his answer -was no.  Now, we did see some improvements- the self-harm stopped- that was certainly a huge relief, but did we recognize Nathan as the same delayed child as he had been the year before? Most certainly yes.  And the next year too.  When he left infants and toddlers at about 3 years old, it wasn’t triumphantly at all- it felt sad.  It felt like, well, he’s exhausted the real early intervention, time to move on to the next, less intense step (and it is, let’s not lie- infants and toddlers is one on one intense instruction and that just cannot be said for ECI).  I felt the same vibe for about the first full year he was in ECI- until about last Nov-Dec.  When Miss Gwen, our home instructor, started working with Nate in the classroom one day a week she was able to show the teacher and aides what Nate could really do.  That changed things for the better.  And as we changed interventions this spring, and Nate began private speech, things improved even more.

So to say that a lot is riding on this year is putting it incredibly mildly.  Next year he will have a totally new placement- either in a special needs school or in a special needs classroom in a mainstream school.  I won’t even begin to con myself into thinking he could go to kindergarten; I don’t need to set myself up for any more heartache.  But I can try to hope for the classroom in the mainstream school possibly right?  I can hope.  I can potty train him like a maniac, I can continue all of the interventions I am doing now, I can take him to all the therapies I am now and pray they continue to make a difference.

The fact remains, this year feels like we are trying to sneak through the window as it closes and it scares the crap out of me.   And that is why one little letter that I was already expecting turned my world upside down this afternoon.

Wednesday, 16 July 2014

Busy This Weekend? Come To Annapolis and Help Kids With Autism!!

See, I told you you were going to be hearing a lot about this event!!!  THIS Saturday is the Mariner Music Fest at Metropolitan Kitchen and Lounge in Annapolis- it goes from 12pm to midnight- there are events such as arts and crafts, live music and an instrument petting zoo for kids from 12-4pm and live music for adults starts on the second floor at 3pm.  There really is something for everyone and in case I need to remind you (again)- all proceeds benefit the Avergan Foundation- which provides scholarships for kids on the spectrum to attend Cisco Center.  Hope to see you there!

Tuesday, 15 July 2014

Layers- Of Progress and Stress

Watching Nathan’s progress is like peeling away the layers of an onion.  Every week now I feel like a new little piece of him is showing itself.  Some things only John and I would notice, like when he went running at John with the remote the other day shouting “baby baby” and it turned out he wanted the dino episode with the baby dinosaurs in it.  Or when we were going through the Chick Fil-A drive thru and I asked him if he wanted chicken or he wanted fries and he said drink.  (Independent answer to a question, not even one of the options presented, yet relevant).  But the change is there.
The interventions remain intense.  And incredibly draining for me.  I would do this all over again, every single day of work is worth it, and I am putting on a brave face day to day, but the truth is, I am exhausted and very burnt out.  I cry at the drop of a pin and adding one more stressor just pushes me right over the edge.  Such as when I drove Jack to camp and discovered he had a field trip we knew nothing about (which is fine except he needed his “uniform” and I needed to drive back like a bat out of hell to get it there in time) or when the melatonin was missing at bedtime.  And that was just in one day.  Both of those incidents provoked tears- such small stuff.  The problem is people don’t realize just how on edge I am.  I have gotten pretty good at doing my crying behind closed doors and not dumping my problems onto other stressed out individuals.  The unfortunate result is that no one knows I am having a hard time, and no one asks.  I feel alone, and on top of that, because I seem “together” I find myself a shoulder for others.  And I want to be there- and yet right now- I am honestly all tapped out.  The amount of work that I have to do with the boys at home is just so incredibly overwhelming.
Stress definitely exists in layers, much like Nate’s autism symptoms, only mine are building as his are peeling away.  At the core is the stress of knowing my children have these difficulties and will face challenges throughout their lives- this never ever goes away.  And as one moves outward, there are the financial stresses of autism, the time stressors of autism, my job, Nathan hitting me and my fear that it will get worse as he grows, my marriage, everyone else’s problems, my daily housework, the kid’s minute to minute medication needs, my relationships, and finally if there is any room, that really thin layer that goes rotten and falls off first is my well-being. 

Yesterday I woke up with blurred vision and intense pain on the left side of my head.  Although bad, this is usually the type of thing I just push through.  After I got Nate off to school, and Jack off to camp and was trying to sit through the pain and wait for the medications to kick in so I could get to work, it hit me.  I have not allowed myself a sick day or day to myself for that matter in over a year- every single day has been for a doctor appointment for the boys, or a sick/snow day for the boys or for another member of my family who needed me.  No wonder.  And that’s with at least 3-4 headache days a week.   No wonder I am at my wits end.  So yesterday I allowed myself a bit of a nervous breakdown.  I can’t say I really feel “better” today- maybe slightly less tired, already looking forward to our home visit with the DDA this week to be placed on their wait list to hopefully get some financial assistance somewhere sometime in the future.  I guess the point is that I finally did it for me.   If I don’t do that every once in a while, I AM going to break.  

Monday, 7 July 2014

Nate- Progress and Planning For The Future

Well hello there, it's been awhile.  We've been quite busy continuing with interventions for both boys not to mention just regular summer stuff.  I've been finding it harder and harder to make myself sit down and write in the evening.  My life is pretty full, and really I do like it that way.  But it's still nice to get a chance to process things.

We are continuing to see positive changes in Nate.  We are working with the recommendations that came from the zyto scan we had in April and using quite a bit of homeopathy as well as treatment for chronic infections- I can say with great confidence that this is the best period of improvement that Nate has ever had.  His speech continues to improve, he is repeating more and more words, he said "mimi" to his grandmother for the first time a few weeks ago (that in and of itself is tear worthy after 4 and a half years), he is saying the names of more foods,  he is trying to tell us where to go, what he wants, what to do, etc.  He has a "tv technique" now, and boy is this kid bossy!  He hands you the remote, shouts go when you land on the wrong program (this is netflix or amazon streaming) until you land on the right one, then as you select episodes, he grabs the remote from you, and when the episode comes on, if it is the wrong one, he hands the remote back and says go- once you choose the right one, he takes it away and sets it down.  I of course verbalize "not this mommy", "yes this mommy" as we do it, but he is certainly doing a good job of selecting.  Same thing with food- if you try to hand him an item he doesn't want he almost knocks it out of your hand, until you produce what he wants, then he double taps and says "want" (and then I make him say the name of the item).  He also clearly comprehends what we are saying at a much higher level, as evidenced by the tantrums he throws when it's not what he wants to hear.

And of course it's not just language- it's his level of awareness.  Let me tell you- having waited for this as long as I have, I appreciate every development so much now.  I mean watching Jack learn how to read this year was completely miraculous, especially after watching Nate struggle so much with communication, and these other new developments are no less amazing.  John feels the same way.  One day last week Nate noticed Darby our little dog, he laughed and said "dog".  Yep, he noticed the dog and thought he was cute- how awesome is that?  And another really cool thing he is doing is looking at family pictures- literally picking them up and looking at family members- he particularly likes one of my whole side of the family from Thanksgiving last year and then another one of all of us with his mimi from Halloween.  He is totally noticing that they are pictures of people he knows.  He has an "interest" in dinosaurs on tv, and he is actually looking at dino books- seeking them out.  He turns his head the FIRST time I call his name every single time.  I can't say that he does for everyone else on earth but for me he does- and he did for my girlfriend last week now that I think of it.  Tonight he was pulling out his dresser drawers and investigating for the first time in years- both John and I were like- WOW!  Yes, he is 4, and yes, WOW!  Last week he pee'd on his bed and laughed at me.

We are seeing so many good things from Nate.  So I am going to keep plowing through with these interventions.  And.....these improvements are giving me some hope for his future for sure.  In a year, no matter what, he will go to kindergarten equivalent.  Whatever he is ready for- it will not be mainstream- that much I know, and I am not going to set myself up for devastation.  So it will either be a specifically special needs school, or what's called an autism "cluster" site classroom, which is in a mainstream school, and enables the children to be mainstreamed for things like lunch and "specials" (gym, music, art), and eventually academics if  they progress to that point.  It would be much easier for him to start there than for him to move there (or at least that's how I perceive it and what I want in my mind).  The biggie?  He has to be potty trained.  Potty training.  Potty training a second child with autism.  potty training.  ok.  I am doing my research and girding my loins.  I will NOT have this be the obstacle if all of the other things that we are doing bring him to a place where he has the opportunity to be in a mainstream school.  So this is going to be the new focus- even if we have to spend the month of August at home.  all the time.

Expect an upcoming everything potty training and autism post.  But don't get me wrong, this is a great challenge to have- a year ago- it wouldn't have been an option- I feel blessed that we're here!