Mommy and Natey Time

OK, the first part of this will be whining, but I'll get it over with as quickly as possible ok?  Earlier this summer I had scheduled myself to be off of work all week in case the funding for Cisco Center didn't come through.  Then it did, hip hip hooray!  So in a shocking and selfish move, I kept two days all for me- planned to work this mon, tues, wed, and then take off the rest of the week to get organized for the school year, buy school supplies and consign stuff that doesn't fit anyone anymore. 

Well first, I had to schedule a study appointment for Jack- there goes Friday morning, so John and I just decided to get the boys early from Cisco and take them to see Planes in the afternoon ( I am Soooooo excited).  Then last night I hear hacking from Nathan's room; then sneezing, then coughing.  He ended up sleeping with us last night and there was no way I was going to expose a room full of special needs kids to an illness- talk about a death wish, lol, so I kept him home.  There goes Thursday.  I won't deny that no matter how much I love the kids, I was really looking forward to this time.  Like REALLY.  So I was pretty bummed. 

But then Nate and I snuggled in my bed until almost 9, and had a leisurely breakfast, then we played for awhile.  He seemed ok, so we went ahead to the consignment shop and dropped off a bunch of clothing.  And he still seemed fine, so we went to Marshall's, where we spent time just looking at toys and books for him.  He was beside himself with happiness, either over our one on one time or the toys, couldn't quite tell.  When we were done, I plopped him in his seat, walked around, got into mine and turned around to this....

It appears it was the mommy time that he was happy about.  I am sure he was thrilled to be the one and only for a day- this happens so rarely.  This smile completely turned my day around (although honestly, I was already happy).  We went home and ate lunch, and then we both took a nice long nap- he's still sleeping.

 

In a stunning climax, I checked my messages and got the BEST EMAIL EVER from the compounding pharmacy.  They ran Nate's mitochondrial cocktail through our insurance (finally) and guess what???? IT'S COVERED!!!!!!  With a $35 copay.  I. am. ecstatic!!!!!!  So we should be getting a 5 day supply by Monday- the flavor will be chocolate cherry.  If he will take that, then they will send his full prescription.  If not, we'll try another flavor.  Victory is sweet!!! And apparently so are mitochondrial cocktails!

My Kiddo's Memory is Crazy

We all have them, our early childhood memories.  My first memory involves getting lost in a post office and finally grabbing onto what I thought were my mom's legs- instead they belonged to a really tall man.  Ack!!!

Jack will bring things up some times and it just astounds me the detail with which he remembers some things.  I am talking about stuff from when he was about 16 months old.  A few months ago, he asked me if I remembered the time I let him cry and cry in his crib and he dropped his favorite plane and couldn't reach it.  This must have been one of those times I was trying to ahem, "transition" him to his crib.  So wanting to test if this was really a memory or just my dramatic child's imagination, I asked him to describe the plane.  He looked at me like I was a moron and told me that it was the blue one with the green propeller and red bolt.  Well duh

Yes dear, I do remember that one.  We still have it, and he still plays with it. 

Today he took his memory to a whole new level of detail.  Recently his daddy ordered him a Sopwith Camel airplane, as he is back to World War I right now.  When it came, I looked at John and reminded him that I still had PTSD from the last Sopwith Camel that he gave him for his 3rd birthday- and that this was the exact same one.  Why do you ask would I have PTSD over a toy plane?  All I can say is this- it was BAD.  The plane, you see, is diecast metal, but it has many fragile wires and plastic pieces, that make it not suitable for a small child to play with.  Unfortunately, our son does not have the typical interests of a small child, ie, there are no "toy" Sopwith Camels out there.  That plane broke for the first time about 5 minutes after daddy left for work.  I superglued it while Jack was at preschool, but it broke no fewer than 5 more times that day.  Every single instance was of course accompanied by a massive meltdown- the day was absolutely tortuous, and after a certain point, there's only so much that superglue can do, you know? 

Well, this morning, after 3 days, the first major piece broke off of his new Sopwith Camel.  At least now he has the words to say, "glue it mommy" instead of just screaming, but it was still a borderline meltdown.  On the way home from camp today, Jack asked me if I remembered his "bee birthday".  He was referring to the fact that I made bumblebee and beehive cookies for his school friends on his 3rd birthday (this was his second area of interest to planes at that time).  I said yes, why?  He came back with "remember how I had that other Sopwith Camel and every single piece broke off and you called it crap?  I was really sad.  But now I have a new one, and this one belonged to Mr. Yimsiri Watana (only John will get that one)".  I guess I shouldnt' be so surprised that he remembered this, as it surely caused him a lot of stress, but still....he was only three, and so many other things happened around then, including an awesome airplane birthday party.  I did so many things to distract him and I thought I succeeded in helping him forget about this "incident".  But here we are, 3 and a half years later and he brought it up without me saying a word. I think this is pretty remarkable.  Kids really are little sponges.  Also, it's a good reminder- watch what you say and do people- seriously, I said crap when he was three and he brought it up today- I am soooo screwed.

Contraception and Why It Gives Me Hope For Autism

Ok, Ok, I know that could sound bad, but it’s not what you might think.  Any type of progress in terms of insurance coverage is a sign of hope for me.  Like yesterday, I went to pick up my birth control and I whipped out my debit card to pay the copay- the pharmacy technician told me to have a good day after I signed the HIPAA thing.  I said, I’m sorry, but I haven’t paid yet.  Her response- it’s free.

http://www.politico.com/story/2013/06/obamacare-birth-control-coverage-policy-93566.html

I’m out of touch apparently and didn’t know this had actually gone through.  While I disagree with quite a few aspects of obamacare, this is a good call.  I know that some feel like it’s the government’s way of trying to control population growth, but until they are forcing birth control down your throat or holding you down to make you take Depo shots, that’s simply not true.  Unwanted pregnancy prevention is a good thing for both mom and potential baby.  As a nurse who has worked in the inner city, trust me when I say this. It is not an opinion, it is fact. 

So let’s take a little journey through the history of contraception coverage.  When I was a teenager, my OB/GYN wanted to put me on birth control pills due to some issues I was having; she told me at the time that she had to label it as such diagnosis-wise for insurance purposes, otherwise they would not cover it.  In other words, there was no coverage for birth control when used as birth control, only when used to regulate a cycle.  When I was in my twenties, I could go to the student health center and purchase it for a cheaper price, in my late twenties, when the copays were still very high for birth control, if there was coverage at all, I went to Planned Parenthood, because I would rather give my money to a cause that is helping young girls prevent pregnancy than to the insurance company.  I know that many individuals who are “pro-life” would disagree with this decision, but once again, it is the practical, experienced nurse side of me that sees the necessity of this organization.  And for the past 10 years or so, birth control has had the same copay as any other prescription, which frankly was fine with me.

So now it’s FREE

The parallel to autism is fairly obvious.  Right now, almost no medical intervention is covered for the diagnosis of autism, right?  It’s not acknowledged by the government as the public health issue that it has come to be.  It’s not recognized for the medical problem that it is- it’s still considered a behavioral issue only.  And thus insurance coverage for medical intervention is not mandated, as it should be.  For interventions such as occupational therapy, speech therapy, physical therapy, feeding therapy, etc., most professionals are careful to use a diagnosis of developmental delay, speech delay, dysphagia, etc.  Because if the diagnosis of autism is used, it will not be covered.  Even if these services are covered under developmental delay, the number of allotted sessions is often inadequate, as the coverage is not tailored to the needs of a person with autism.  It is not being acknowledged that these are effective and medically necessary treatments for autism.  My hope, and prayer is that autism coverage will follow a similar trajectory (more rapid preferably) and that in the future, when a parent faces a diagnosis of autism they will have the comfort of knowing they can obtain help for their child.  Unfortunately, the issue is complex, and I fear that it will be a long road.  Anyway, this instance does give me hope that the changes that are needed are possible.

What Do I Deserve?

What do I deserve?  As an autism mom, a wife, a working woman?  That is such a difficult question.  I am accustomed to putting my needs last, to funneling all available resources toward the needs of the kids.  Many parents feel this way, it’s just that in our case the needs are greater, and well, more expensive.  So I have tried to become ok with the status quo- the clothing I already own, the furniture we have always had, haircuts every 6 months or so, and reading the same books over, and over, and over.  And usually that’s just fine.

There has been one area of my home where I was unable to do this- the dining room.  To me, a family’s eating area is super important- it’s the place where the family gathers every day, the place where I often work after the kids come home in the afternoon, and the place where I work with Jack on his fine motor tasks.  And our dining set was on its last legs.  We bought our set as an antique about 9 years ago when we were very first married.  Even then, I didn’t like it.  But it was in good shape, it was a full set, and frankly, it was cheap.  I figured that we wouldn’t eat on that table much anyway once we bought another home- that we would eat in the kitchen.  That didn’t happen- and in the past 9 years, this “antique” has endured quite a lot of abuse at the hands of the entire family.  The chairs have been “tightened” and wood-glued back together countless times, I have recovered the stained seats, and Nate even knocked one chair down and broke it at one point.  I hated my dining room- to the point that when John and I were having marital problems my only slightly happy thought about a potential separation was that maybe he would take the hideous dining set.  Pretty sad, huh?  The breaking point came when we had company a few weeks ago.  I was setting up the table for the meal and found myself arranging the chairs strategically so that John and I would be sitting in the ones most likely to fall apart during the meal.  I didn’t want my guests falling.  Clearly it was time to make a change. 

Obviously we do not have bunches of money lying around to purchase new furniture.  It was more of a pipe dream.  But I would peruse craigslist on a regular basis looking at used furniture and daydreaming.  I always wanted a round table- that’s what I grew up with.  I was used to my feet resting on the pedestal; I had “fond” memories of me yelling at my mother as she quizzed me before a test (at our table) that she was “doing it wrong” when I couldn’t answer a question (ha).  It just felt like home to me.  So after looking for about 6 months, I finally saw a table and chair set that looked just right- and at a very reasonable price.  It was also high quality- Ethan Allen (also what I grew up with).  I broached the subject with John and after much discussion, he told me to go for it.  And I did, and brought the chairs home.  While I was there I saw the most beautiful china cabinet in the owner’s home.  I had seen it once before when I liked another set, but the set was white, and there was no way it would work in our home.  The owner agreed to sell it to me, for a price that in no way could I rationalize.  I felt like a petulant child- but I waaaaaant it!!!!  Perhaps that’s why I went back to my childhood technique for getting something I wanted- working for it.  My parents handed very little to me when I was a child- I worked for what I had.  If I wanted trendy clothes in high school, I had to use my own money; same went if I wanted a car.  When I was in third grade, I shoveled driveways for 2 days straight to earn the money to buy a cabbage patch preemie doll.  Loved that doll more than any of my others.  So I formulated a plan- I had already decided the table and chairs were worth it to our family- for safety purposes if nothing else.  The china cabinet- I couldn’t really justify it.  I can’t work overtime because my job is salary.  But….I could sell things.  Clear clutter and make some money at the same time.  So I set about doing just that.  In the span of a week, I sold our old dining room set, an old washer and dryer that were sitting in our garage, the elliptical I never use because I run now, the double stroller, and the play kitchen.  In the end, I earned all of the money needed for the china cabinet.  The gracious seller's husband helped me move it and the table- which was no small feat.  And now when I walk into our dining room I feel complete and utter peace.  It is exactly as I always pictured it- and I avoided the all too common guilt I experience when I do anything for myself.  I earned this.  And I love it as much as I did that cabbage patch doll.

What does this have to do with autism?  Well any autism or special needs parent could answer that in a heartbeat.  Once your child is diagnosed with special needs, it becomes difficult to ever picture doing anything for yourself again.  In general, I would be willing to sit on those rickety chairs for a lifetime if I knew that money could go towards an effective treatment for the boys.  But if I give every single ounce of everything that I have to my sons, no matter what the outcome, how am I treating myself?  I work hard every day, both at my job and with the boys.  At some point, I have to allow myself to have something too.  Something that makes me smile every single day, something tangible.  It makes it easier for me to handle the fact that Nathan started playing peekaboo with me for the first time in two years this weekend- and that this is huge progress (he’s almost four years old).  It helps me deal with the fact that Jack is going through yet another resurgence of his airplane obsession, accompanied by 5 to 6 daily meltdowns when he can’t find one, or something breaks, or I tell him he can’t keep his Lego plane in his bed while he sleeps (for obvious reasons).  There is that little voice in the back of my head screaming mitochondrial cocktail!!!!  Today I am telling that little voice to shut up.  Yes, so far every compounding pharmacy has quoted me $250 a month or more to make this for Nathan.  I am not going to do it.  Unless by some lark the insurance will cover it, or the pharmacist can omit one or two ingredients that will make it affordable (I can give one or two supplements the old fashioned, hiding in the juice way, just not 12).  If neither of these tactics is effective, then I am just going to have to think harder about how to hide all of these powders in food and drink.  Because frankly, I have spent every spare penny on supplements, and special diets for over two years now with very little progress.  I am not giving up on supplementing or on progress in general, but I have decided to slow my efforts to a more livable pace.  I didn’t stop buying the boys toys or clothing when the autism diagnosis came, and my husband didn’t stop his interests and hobbies, but when I look in the mirror I realize that in many ways, everything stopped for me.  To a certain extent, that’s ok, but I can’t sustain it forever.  So now I have my china cabinet.  And even though I ended up paying “nothing” for it after all that I sold this week, it was still a gift that I gave to myself.  Not only something that I earned, but something that I deserve.   

Life has to continue.  I can’t stop living, or ignore my wants and needs forever because of my children’s special needs.  I don’t have to choose, I can take care of them, John, and myself. 

Worth every penny! 

In A Funk

Just realized this is the longest I have gone without posting in months.  I truly am in a funk.  I wake up every morning, look at my kids and think "you want breakfast AGAIN?"  The prospect of completing the morning routine is just overwhelming at the moment, as is working all day.  And dinner?  What dinner?  Was I supposed to cook that?  oops

What's the issue?  I am sure that some of it is depression, which is something I have battled intermittenly throughout adulthood.  But much of it is pain.  I am on day 5 of yet another migraine and it's just getting old.  A few weeks ago I was watching that commercial on TV- the one about using botox for chronic migraines.  I listened to their description of the appropriate candidate for this treatment and felt sorry for individuals in that situation.  Then I started to think back- I would say I have averaging 1-2 migraines a week these past few months with most of them lasting several days.  It's pretty awful, and actually, it puts me into the category of "acceptable candidate" for botox.  Not that I'm going to do it, but I guess I just didn't realize it had gotten this bad.

I have been going to a chiropractor to work on a back injury ( you know, from when I moved the elliptical machine to the garage) and told him about the headache situation.  He did quite a bit of work on my neck last week when I went, cracking things way too many times to be normal.  The good news is that for about 36 hours I was completely pain free (not counting my back).  Then the headache came again.  I was supposed to search for triggers also, so far this is what I found- Jack's meltdowns, any arguments, running, coffee, beer, wine, cocktails, menstrual cycle, too little sleep.  Well that pretty much covers everything now doesn't it?  I would be even more nervous if I hadn't had a head CT last fall during a particularly awful headache, one when I thought I was having an aneurysm.  Everything looked ok, and migraines run in our family, so I have attributed it to that.  Of course, brain tumors also run in my family...ugh.

Luckily the boys have been pretty good the past few days, and I have been getting some rest, in the evenings thanks to my hubby.  I just need a break from all of this, it's yucky.  What I really need is a few days away from all of the stressors and responsibilities of this life- my husband always answers that we should definitely try to do that sometime, we need time away from the kids.  I laugh- I meant ME!  All alone!  Tall order I know, and not likely to happen, but a girl can dream.  I can picture it now- me, quiet, my own bed....sigh. 

I'm sure anyone who has migraines can completely relate.  I feel so blah. 

My Confounding Compounding Issues....

It’s been about 3 weeks now since our last visit to the developmental pediatrician.  I was given many “assignments” for both boys, as always.  After about 15 phone calls and just as many emails, I think that I have found someone who can compound the ridiculous number of supplements that the doctor wants Nathan to take- without sending us into bankruptcy.  To refresh your memory, or in case you missed that post- it was approximately 11 pills, 2 powders and 9 teaspoons of liquid.  Nate is 3 and doesn’t take pills.  I have continued giving him “some” of the supplements, the ones I have deemed to be the most important, by hiding them in his food and drink, just until we come up with a more permanent solution.  He has been a pretty good sport about it and by now I can gauge how many things I can add to his beloved cup before he rejects it.

It was way more complicated to solve this issue than I had originally imagined.  Our regular compounding pharmacy was pretty slow to respond and their “cocktail” was a pretty standard formulation which they did not seem very willing to alter.  I found another compounding pharmacy that was eager as could be to assist me.  This sadly should have warned me of what I was in for.  I gave them all of the supplements and doses and after several days they called me to let me know that they had come up with a liquid formulation that would be twice a day.  Awesome!  Ha, not so much.  A one month supply of the compound was….wait for it….$250!!!  And they do not take insurance.  This would be in addition to the other supplements both boys are already on.  And if it proved to be helpful for Nate we certainly would want Jack to try it too- there was just no way. 

Back to the drawing board.  I located another compounding pharmacy who wanted to speak directly with the doctor- after many, many attempts we finally made this happen.  I called to check in with them yesterday and they said they need a little more time, but it looks doable, and they estimated the cost to be about $60.  This sounds a bit more reasonable to me, and they suggested I speak with our insurance company to see if compounded vitamins are covered, as they will provide me with the appropriate paperwork for reimbursement if that's a possibility.  I am not holding out much hope, but even if they don’t cover it, we can handle this, especially if it works!  They are also able to provide a flavor that will be palatable, and keep it gluten and dairy free.  Ironically, they are 5 miles from our house- who knew?

Anyway, keep your fingers crossed that we have really finally solved this issue- oh and also that it helps!  After all of this….well I am just praying.

Autism, Insurance, and Maryland

I bring a pretty unique perspective to the world of autism and insurance.  For those who don’t know, I am a nurse- not only a nurse, but a nurse coordinator for an insurance company.  Back when I was a nurse in a hospital I had the “typical” view of insurance companies- you know, they’re evil.  They deny everything.  They are MEAN.  I would find out that one of my patient’s admissions was being delayed because the insurance company had not yet approved it and I would be all up in arms about it.  What’s wrong with them?  What’s to approve?

See now I know that maybe 30-40% of the time I was right to blame the insurance.  Unfortunately, what I didn’t understand is that it goes both ways.  Much of the time it was an issue of the hospital NOT CALLING for authorization until you know, the day before.  And it was a bone marrow transplant- several hundreds of thousands of dollars.  That type of determination deserves serious consideration.  I know that first hand- I make those determinations every day now.  Half the time that the pharmacy tells you that the insurance “hasn’t approved” your medication- guess what?  Yes, the insurance is requiring a prior authorization for either a very expensive or unusual drug- that is their role.  We pay them (or the government pays them depending) a certain amount and they use those funds to responsibly deliver services.  And they are cost cutters for sure.  Do I always agree with it?  No.  But that’s how it goes right now.  The point is that 9 times out of 10 when one of my patients calls me with this complaint- the problem is that the physician never called the authorization request in.  The pharmacy notifies them, and because they are busy, or forget or whatever, they neglect to make the call.  But the insurance takes the fall. 

I am not claiming that the insurance company is above reproach by any means.  Believe me, there are days when I feel like the bad guy for sure.  And there are days that I would like to reach through the phone and wring the neck of whatever representative of my insurance company is telling me that one of my sons is not covered for a service. 

We all know that with autism it is unbelievably difficult to get your child what they need.  I can’t even count how many times I have complained about that in my blog.  Even for the services that are covered, most of the time you can’t even use the diagnosis of autism.  It has to be developmental delay or something similar.  Otherwise it will be denied. 

Today I attended a very interesting conference call for work that was about insurance coverage and autism.  A very interesting and disturbing map was shown at one point.  I knew that Maryland has not participated in the widespread insurance reform that is ongoing to include therapy for autism as one of their mandated services.  What I did not know is that Maryland is one of only 8 states that have chosen not to participate.  Now all of the states that participate have not done so in a thorough or effective manner, but at least there have been steps.  Maryland- nothing.

A few months ago I posted about autism case management services that were offered to me through CIGNA, our insurance company.  I was so mad that they told me that an autism case manager could make me aware of extra services available for my children, and then when I spoke with one they told me that basically, my plan specifically offered nothing. 

http://jackandnatesmom.blogspot.com/2013/04/added-benefits-really.html

At the time I had read about the lack of mandate for ABA and related services in the state of Maryland.  I guess I was under the impression that because I have private insurance, it didn’t have to be state mandated in order to be provided.  I was wrong.  It does.  And it’s not CIGNA’s decision, it’s the employer’s.  And employers as a whole are going to take the least expensive route correct?  So they are going to provide the services that the particular state says they have to provide.  And the particular insurance company?  Well they really have no say in the matter.  They are administering the benefits that their client authorizes them to provide.  In Maryland, this does not include any services for autism.  So basically, we are screwed.

I feel a little bad- I have been mad at Cigna.  Blaming the wrong entity.  Now I am mad at the state of Maryland. To all of my Maryland readers- this is CRAP and it needs to be changed a.s.a.p.   Consult the information below, contact your state representative.  I know that I am going to.  How many of us have children who are missing opportunities, regressing, because we can’t obtain coverage for ABA therapy?  Private ABA therapy, while very effective, is also very expensive.  For parents with neurotypical kiddos, take a gander:

http://www.tacanow.org/family-resources/start-an-in-home-therapy-program/

ABA programs can be costly anywhere from $15,000-$80,000 each year and beyond

What parent do you know that could afford this tab?  Other than you know a real housewife of New Jersey or former MTV VJ?  Let’s get real. 

Just another example of why it is so important to do your research and stay informed.