Thursday, 30 January 2014

Routine? What Routine? When Nothing Stays the Same

Lately I feel like I have been doing a crappy job at many different things.  I think all mommies feel this way at times.  It’s inevitable- how many hats can one person wear?  Forget about wearing them well. Just getting the basics done is overwhelming lately.  It doesn’t help that all of our routines seem be to flying out the window…

The past few weeks have been extremely complicated for this working mommy (and many other mommies too).  The boys have not had one “normal” day in the last two weeks.  This week school is two half days, two days off, and then finally Friday I thought would actually be typical but then I came to find out that it’s the last Friday of the month, and Nate’s center is closed in the afternoon.  Today the kids went to Cisco Center for the day, thank God, so I had just my job to do during business hours.  But every other day, they have been here.  I have been caring for them for part of the day while working, every day for the past two weeks.  This is insane when your job is telephonic.  Not only am I under tremendous pressure to get my job done, but I feel as though I am plopping my boys in front of the t.v. and praying they will keep quiet.  Bad mommy.  On top of that, all of the housework that I usually get done during my lunch break, etc., has gone out the window.  So the house is a mess.  Which stresses me out beyond belief. 

Jack has been off of memantine for several weeks now, and I think it has affected his sleep.  It is soooo much worse right now- it seems like every other night he is up for hours.  It started at 2:30 am yesterday morning.  At least every 20 minutes until, well, until my mom got here at 9 to help so I could get my calls in for work (I am required to make 30 outreach calls to my patients each day- try accomplishing that with my little aspie under foot).  He wakes Nate up during this process too.  And both boys really seem to like climbing on me, especially in the middle of the night.  I am freaking tired.

Nate is sliding backward a bit.  Less repetition, fewer words.  Although he is also messing with me- he keeps laughing and shaking his head no when I ask him to say something.  And if I push him hard enough, he does it, but we are talking five minutes to get one word out of him.  Much more pointing and “in there, in there, in there” where I am pulling everything out of the cabinet trying to find what he wants.  This is so frustrating.

I am thinking of some new interventions for the boys.  Reading a new book.  Thinking.  I have my mom reading the same book so she can tell me if I’m crazy.  I need a check person.  My next step is to remove soy from Nate’s diet.   Two of his go-to foods have soy in them.  This may not sound like a huge deal, but with a picky palate like Nate’s, rest assured, it is.  But it can’t be worse than removing dairy- that boy was addicted to milk- he was like a junkie looking for a fix for the first week we eliminated dairy.  If we can handle that, this should be easy by comparison.

We are also losing both of the boys’ private OT’s- they are both moving.  I actually think this is harder on me than it is on them- as a parent, especially when your child cannot tell you what goes on, you put an enormous amount of trust in these practitioners.  Especially because they are pushing your kids and urging them to do things that are uncomfortable at times.  Nate’s OT in particular has been with him since “the beginning”.  I don’t think he had even been officially diagnosed when they started working together.  He can say her name.  And just to show how significant that accomplishment is- her name is Amanda.  Not exactly simple.  Nate is also finally having his private speech evaluation next week.  I am totally psyched for this- I put it off for quite a long time, then we were on a waiting list for months.  Before this fall, he wasn’t ready.  His sensory issues were the primary focus- he couldn’t attend long enough to do anything productive in speech.  He can now J.  I am going to be picking him up from Cisco Center during my lunch hour, running him to speech (which is about 5 minutes away), and then bringing him back when he is done- that’s bound to cause some meltdowns.  Unfortunately, this is the only nearby practice our insurance will cover, and it’s the only time they have available, so we will just have to make it work.

Onward!  Right??  Maybe, just maybe, everyone will sleep tonight.  We are DUE for a break in that department.

Thursday, 23 January 2014

Something Has to Give- Why Special Needs Parents Struggle in the Workplace

This past week has been really crappy.  Jack was home sick last Friday, the same day I had to take Nate to NIH, so John stayed home with Jack while Nate and I did the appointment.  Then the weekend and MLK were fine other than Jack and mommy both being a bit under the weather.  Then of course the snow hit.  The kids were home Tuesday and Wednesday, and now finally today they just have a two hour delay, and then school.  Tomorrow is a half day- I have no idea what is happening next week- the kids were supposed to be out of school Monday and Tuesday for some something that I have no idea what it is.  Fine.  Shall we count how many days that is of school that my children did not have (or did not have full days)?  I count 8 school days in a row- this is not spring break, that’s still coming. No, school is not daycare, but the fact of the matter is, it is part of our “coverage”, our daily routine that makes working possible.

I want you to understand that this is by no means a complaint about school, or the snow days.  They did the appropriate thing this week by closing, no question.  The same goes for local businesses and daycares.  There are major liability issues there, totally get it and have no problem with it. 

What I have a problem with is the culture that we have created for ourselves in the American workplace.  I don’t know how it happened- I think it must have been gradual, but it’s established an incredibly unreasonable expectation for families everywhere and if we want to “preserve the American family” then something has to change.  This is unlivable. 

How many parents who work outside of the home have heard this?  “Of course your family comes first and should come first.”  What is it followed by?  “But….”  I call bull shit.  I don’t blame immediate supervisors and not even the people above them.  This is driven by the most high up people in major companies.  This terrible culture that your family comes first UNLESS it happens frequently, UNLESS it’s inconvenient or God forbid, UNLESS it’s near a holiday or when a coworker is away.  In my mind, there is no BUT permitted in this phrase.  Family comes first.

I feel very strongly about this.  I also feel very strongly that my family needs the income provided by both my and my husband’s jobs.  We have two special needs kids, insurance that doesn’t cover MOST of what they need, and services that are way more expensive than those for a neurotypical kid.  Care for a day for your child while you work?  $100.  ONE swimming lesson?  $40.  Not to mention the number of appointments that are needed for our kiddos.  When I filed for FMLA for the boys it was for 12 hours a month for each child.  That’s 24 hours a month!  Of appointments!!  Now I won’t use that every month, but once again, it was necessary to request this in order to protect my job.  Does anyone ever stop to think that while mom and dad are not getting paid while taking FMLA they are still paying for special needs childcare?  We pay whether our kids are there or not.  Same as regular childcare, just more expensive.  It’s not the center’s fault the child’s not there right?  There goes more money….oh and also, your name is MUD at work because you have missed more time.

Hmmm, think about that equation- miss work, get in trouble, or file for FMLA, not in trouble but also not paid, pay for child care, have a stressful appointment where they likely talk about your son’s lack of progress (my world), come home exhausted and pop back into work where once again, your name is mud.  Sounds awesome right?  This happens to ALL parents to some extent but when your child has special needs it’s amplified.  And if you have two children with special needs?  Self –explanatory right?

So how does a parent in this situation handle 8 days of unexpected time off from school for both kids?  Seriously, how???  Thank God my husband’s job is a bit more flexible, they had liberal leave and he was able to be home with the kids for the snow days.  I telecommute, there is no such thing as a snow day.  We as a family are lucky that someone could stay home.  Many families do not have that luxury. 

If you are a parent who has to go to work on a snowy day (say…..a nurse J) who has a husband that has to go to work on a snowy day, and daycare and school are both closed and no family is nearby- what is the solution there?  Clearly someone cannot work, right?  OK great- but if you have a special needs child, and have needed more time off of work for appointments and encounter this situation when your name is already mud?  Oh and your child with autism has specialist appointments that your husband has already taken off for that day (but you have two kids)? And you drive up to your daycare only to discover that they are in fact closed because of the snow, but didn’t inform you?  WHAT DO YOU DO????

I ask this because I had a friend encounter this situation just yesterday.  A friend who was texting me about how stressed she was, and when I asked where she was, she said “at your door”.  With her son.  Because if she didn’t get to work she would likely get fired.  Yes, I already was working in the midst of a husband, two dogs and two special needs children- for the 3rd day this week.  At first I was completely taken aback- then, I admit it, I was pissed.   Then- I was furious.  At her work, at our society.  At the people who LIE and say “family comes first”.  Do you know how desperate this poor mama was when she showed up on my door step at 8:30?  Can you imagine what she must have been thinking?  Do I have to lose a friend now to keep my job? (No, never J) What if she says no because she is working?  That would never happen of course- John and I made it work.  Thank you by the way to my loving husband for that help.  I wasn’t mad at my friend after those first few minutes, not at all.  I was glad that she knew me well enough to know that I would be there for her.  We families have to stick together. 

Something, somewhere has to give.  Parents cannot be expected to do everything, while having everyone mad at them, while still paying for the services they are not getting (ask my friend if she paid for her little boy’s daycare yesterday- I am sure the answer is yes).  It feels like triple punishment- this juggling act is always difficult, but some days it’s just impossible.  If only we could cry uncle.  As I write this I have two children literally crawling on me- no matter how much I love them, I am thanking God that they will be out of the house in a little while- mommy needs to work.

Sunday, 19 January 2014

How Nathan Turned My Day Around- An Aricept Update

We all have them- those days when we just know we shouldn’t have gotten out of bed within the first hour of being awake.  Friday morning was like that for me…..

I cut my finger trying to open vacuum sealed coffee (yes, in fact I was very aggressively trying to open it, yes I was in a hurry- coffee is serious business in this house).  Jack had a sore throat and was coughing.  He told us he was “sick”.  This was the first time he had ever done that.  I can’t miss work- not even going to go there.  Plus I had to take Nate to NIH after lunch.  So John had to take one for the team- thanks babe. 

After I got Nate onto the bus, I settled in to work.  About an hour after I sat down my phone rang.  It was the agency that handles FMLA claims for my company.  They were denying both Jack and Nate’s claims.  Ummmm….excuse me???   I asked the reason for this ridiculousness and they told me.  Our amazing pediatrician (no sarcasm) had filled out the paperwork in one business day because it had taken so long to get here and it was due the next day- or the claim would be “denied”.  When she specified that I would need approximately 12hrs/month for each boy, she “specified wrong”.  I don’t know how else to put it.  She needed to say, 3 4hr appts a month instead of just “12 hours”.  They contacted the office once to request the information, they didn’t get it, and so without warning they denied both cases.  What does this mean?  It means I am supposed to start all over again.  I. don’t. think. so.  After having a…how should I put it….hmmm, pointed and somewhat hostile conversation with the supervisor, they opened new cases for each boy but agreed to utilize the forms they already had and only require the changes they had previously requested.  And it was then that my work phone cut out.  Stopped working- they couldn’t hear me.  Awesome.  So I was cut off from “my person”.  We all know what that means when using an automated system.  I rebooted my computer twice and could not get the phone back (it’s through the computer).  I called back on my cell and was lucky enough to get an intelligent person who finished what I had started.  Then I called the pediatrician and explained in detail what was needed.  Then I emailed the instructions to them as well.  Fingers crossed. 

So I was unable to work, and I needed to work because I had to leave at noon.  Very frustrating.  I ran around like a mad woman getting ready to go get Nate off of the bus, but even so, I was running late.  I jumped into the car to go meet Nate’s bus (he gets dropped off at Cisco Center) and realized I forgot his favorite cookies.  OK- well my kid only works for food!  So I backed halfway down the block, ran inside (flying past my bewildered husband) grabbed the goods and I was finally off.  To drive behind someone who drove 18 miles an hour (in a 40) the ENTIRE way to Cisco Center.  This is not a big deal, I realize, but it was a contributing factor to the stress of the day.  I did make it in time, phew, but noticed that my gas tank was empty (ahem, husband who drove the boys last).  I was on a tight deadline and you just never know what the traffic is going to be like on the DC beltway, so I ran to the nearest gas station.  Where my credit card was rejected by two different pumps.  I ran inside to pay and found a group of people talking to the clerk because NONE of the credit card machines were functioning. Awesome- so I ran to another gas station and drove to NIH- I remember thinking I’d better drive pretty carefully because if the beginning of the day was any indication, I was having some pretty bad luck.

Then I looked in my rearview mirror.  I saw the most beautiful little boy just grinning away because mommy had gotten him off the bus.  And it all just melted away.  Nate and I were on a road trip- ok, to a hospital, but still, one on one time is special in any form. 

We got to NIH on time; they were on time and amazingly efficient as always.  We talked about what happened to our family with the memantine study at CNMC and they expressed that they too found this abrupt termination unethical.  They stated that it would be one thing if the drug was unsafe for some reason, but that since that was not the case, they agreed that if a child started they should be able to finish.  They assured me this would not happen to Nathan with the Aricept. 

Most of Friday’s assessments were actually question and answer with me.  It’s really difficult to answer developmental questions about your child after only 3 months, to remember what you said in the past and try to evaluate if there have been changes.  Is he turning his head when I point more or less than he was in October?  Does he react more positively to new people?  Is he noticing other children more or less?  Would any of you be able to definitively give a numerical answer for these fields as compared to three months ago?  It was tough, and as I tried to explain the things that Nate has progressed in, I realized that the team was not going to see this as a miraculous development like I do.  They called his speech “echolalia”
Definition “A” in the dictionary:  The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types of schizophrenia.

Well I prefer to think of it as definition B!
An infant's repetition of the sounds made by others, a normal occurrence in childhood development

No, he’s not an infant, but he is significantly delayed, so I think it applies.  I mean, of course I recognize that many of the new words he is saying are simple repetition at this point.  Don’t care.  He is doing something today that he wasn’t doing before October.  And while, for the research team’s purposes, this is just one little box to check off, for his family it is a miracle.  I expressed this to them and also made sure that they understood that some of his new speech is spontaneous.  I also pointed to the fact that he is associating some words with actions- finally!  Clapping his hands, stomping his feet, rubbing his head.  He could not do this before. 

They were able to observe Nate while we were talking- they commented on his increased eye contact with them.  He rarely made eye contact with “strangers” in the past.  But he made meaningful, even teasing (playing peekaboo) eye contact with both the research assistant and the developmental pediatrician.  This is great because no matter how much of a “good historian” you are as a parent, honestly, they don’t believe it until they see it.  It’s so annoying- I mean why would I say my kid can do things that he can’t?  Luckily he also used some words while we were all sitting there(4 doctors for this- seriously)- I want juice (juice now has a C at the end and everything) and the doctor was like “give that boy his cup!”  When I explained to her that he had finished it all, she sent the research assistant to get more- needless to say, I think she was pretty impressed- she certainly wanted to reward the behavior. 

Once the interview was complete, I was required to have a 15 minute “play session” with Nate in a small room while being videotaped.  I am no stranger to doing this with either of my kids- but I still hate it.  It would be one thing if my son was interested in playing with toys, but that’s always been a challenge.  15 minutes feels like eternity when you are being recorded.  I managed to get him to do a puzzle, and read a book with me; he half-heartedly did the shape sorter.  The activities that really showed his engagement were “itsy bitsy spider”- in which he laughed and said “down” and “again” and then “humpty dumpty”,(the very, ahem, active version so he gets some sensory input), and he said “again”.  Then we did airplane and he said “up”.  Then I chased him while he ran laps for the last 8 minutes.  Still, it’s more than he would have done in the past.  At one point when I asked him to come play he laughed and shook his head no- even this is an improvement as in the past he would not have responded at all.. 

On the drive home, I had a bit of a laugh at my own expense.  I wanted them to tell me that Nate was improving.  Silly me.  How the heck do they know?  They know if I tell them so.  Why did I think I needed someone else to tell me what I already know?  I do really want to see how he would score on the ADOS (autism diagnostic observation schedule) and the Denver developmental assessment tools- these will be done in April along with another sleep study.  But I know in my heart (and frankly in my head) that Nate is showing improvements.  I don’t know the why.  The team told me that based on their hypothesis (whoopity do) they would not expect to see any changes at this point.  This is based on what they are looking at.  They are trying to make my child dream and show that this impacts his development over time.  I am down with that.  But there is this too:

Recent studies in autistic brain samples have shown diminished acetylcholine and nicotinic receptor activity. We hypothesized that acetylcholinergic enhancement may pharmacologically improve some autistic characteristics. Donepezil hydrochloride, an acetylcholinesterase inhibitor, was studied previously in two open label studies which showed improvement in the expressive and receptive speech and aberrant behaviors of autistic children. We therefore undertook a double-blind placebo controlled study to confirm these findings. Forty-three patients (35 males, 8 females, average age 6.8 yrs., range 2.1-10.3 yrs), with diagnoses of Autistic Spectrum Disorders enrolled in a randomized six-week, double-blind, placebo-controlled trial of donepezil hydrochloride, with an additional six weeks of open-label treatment. Change was evaluated by the Childhood Autistic Rating Scale, Gardner's Expressive One-Word Picture Vocabulary Test, Revised, and Gardner's Receptive One-Word Picture Vocabulary Test. Testing was administered at baseline, six-week, and twelve-week follow-up. Expressive and receptive speech gains, as well as decreases in severity of overall autistic behavior, were documented after 6-weeks for the treatment group. These improvements were statistically significant when compared to placebo, and were clinically meaningful as assessed over time. Donepezil hydrochloride appears to improve expressive and receptive language as well as overall autistic features, consistent with the hypothesis of acetylcholinergic enhancement

Hey, it’s a win win right?  They get their dreams and Nate gets his speech.  Works for me.  In the meantime, we have increased other interventions both at school and at Cisco; he has been on the mitochondrial cocktail for quite a while now; he had antifungal treatment when he was on antibiotics.  All of these are likely contributing factors to any successes we are seeing.  It’s hard to know.  Frankly the only reason that I care about what is causing the improvement is because I want to make sure we continue whatever it is.  Overall, I am just incredibly grateful.  The aggravations of the morning were long gone….all of the work we have put in, we are finally seeing some progress- there is nothing more important than that.  Now that’s enough to turn a girl’s day around, don’t you think?

Wednesday, 15 January 2014

A New Member of the Family

You are going to think I’m nuts, and you may be right.  I always wanted a third child, but we made the decision not to move forward with this plan when both of the boys were diagnosed with Autism.  It felt like it would take too much away from both the boys and any other new little person who might enter our family.  Lately I have been wanting a dog- really really wanting one.  We have a Labrador who is 9 years old- we got him about a week after we got married.  I love Riley dearly, but he is a Labrador.  He is BIG.  I grew up with dogs, always the same breed- miniature long-haired dachshunds.  My mother will shamelessly admit that when they moved back to the east coast they favored ranch style homes that would better accommodate a dachshund (stairs are rough on their backs).  My parents have another doxie now, and so does my little sister.  So I begged John, began showing him pictures of really cute puppies and luckily he is a sucker for animals.  He easily agreed that we could add a dachshund to our family when we found the right one.

My desire to get a dachshund was partly selfish, but I also felt very strongly that it would be good for the boys.  The boys love my parents’ dog, while they are somewhat intimidated by Riley- he is the sweetest dog ever but his tail could be used as a lethal weapon.  A dachshund is small, non-threatening, on their level. Any type of interaction is a positive thing, and with a doxie it would be hard to avoid. 

Somewhere along the way I decided I didn’t want a true “puppy”.  I didn’t really want to adopt a dog older than a year either, but I was concerned about bringing an 8 week old, tiny puppy into our household for numerous reasons.  I was afraid my little boys who don’t have the best self- awareness might step on a puppy, I was afraid they might be too rough, and I was also afraid a little guy would be too time consuming and thus take too much time from the boys.  I found the perfect compromise recently with our new dog “Darby”.  He is 7 months old.  He is mostly potty-trained (two accidents in 5 days is pretty good in a new setting).  He is mostly crate trained, other than the 10 minutes of yipping each time he is put in the crate.  He is not chewing TOO much, although he does appear to like shoes- particularly mineJ. 

Jack was sooooo excited to get Darby.  He wanted to name him “Ben”, which I love, or…Bennett, or Bentley, or Bailey.  When I picked Darby up though (it took 9 hours of driving which was well worth it) he had been called Darby for 7 months- and he was responding to his name when I said it.  I of all people appreciate this.  He is doing a better job of this than either of my boys!  So I believe I have convinced Jack that it’s best to stick with Darby. 

In these first few days I am already seeing reactions from the boys that are very positive.    The first night Darby was home, Jack brought his water glass from the bathroom to his bedroom and set it down, asking the puppy if he needed a drink.  He is always checking on him, which is exactly what I was hoping for.  Nate didn’t notice him so much the first few days, and believe me, Darby was sniffing him constantly.  He is starting to look at Darby more, and last night when Nate was sitting on the potty, I sat in front of him with Darby on my lap.  Nate reached out and stroked his paws very carefully, and then patted his head.  So sweet!

Riley and Darby are doing very well.  There are some squabbles over toys and bones- Darby holds his ground surprisingly well despite the fact that he is 1/6th the size of Riley.  Darby is my little shadow and barks every time I leave the room- cute as it is, I am hoping he gets over this in the near future, as I am constantly running around, especially in the mornings.  Darby is now my little work buddy, he sits with me all day, content to just hang out.  It’s funny; all of the websites we consulted about introducing the two dogs warned us that the puppy would constantly torment the older dog.  In our family it is the exact opposite.  Riley is way more rambunctious than Darby.  Although things are getting calmer day by day. 

Even John, who was, I think, the most skeptical about this arrangement is totally in love.  I mean he loves this dog- he came into our room last night, where I had snuck Darby onto the bed while I was reading and he just started laughing.  Neither of us wanted to put him in his crate- however I know how very stubborn and spoiled little doxies can get- if we give an inch this little guy will walk all over us! 

I had forgotten just how much I love having a dachshund in the house- this mama is happyJ!

Friday, 10 January 2014

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, 9 January 2014

Almost Like We Flipped A Switch

It started maybe close to two weeks ago and seems to have reached a crescendo today.  I don’t know what triggered it- we had slacked off a bit on his dose of the mitochondrial cocktail while we were away, and just went back up to the recommended amount.  He has had major sleep disturbances this week after we did that.  He has also been on Aricept for exactly 3 months.  I am talking about Nate, it’s almost like someone turned on a light, all right, maybe with a bit of a dimmer switch, but a light nonetheless.  It’s his speech, and it’s freaking amazing to see.

Here are the words we have heard in the past few weeks (if I can remember them all)

Bye bye, Carla, go, up, open, bath, chicken, fry, corn, juice, chip, no (well duh), JACK, night night (for which he says da-da, but he does it consistently), he said no no Jack when Jack was shoving his lollipop in his face after OT tonight.  And he has said things, like, “go bye bye” or “Carla, bye bye”.  He waves bye bye, he claps his hands, he stomps his feet, and best of all, he gives kisses.

This has ALL developed in the last month.  After two years of basically more and cup. (and a few words gained and lost in the mix) The key in all of this is one that will have every autism mama shaking her fist with joy when she reads this.  He is REPEATING sounds and words when we ask him to.  He has figured out what that means, and figured out that he can do it.  And he is doing it; he is really really doing it.  I’m not even that afraid to say it because it’s such a dramatic improvement that even if he regresses again I truly don’t believe he can go back to where he was.  Once a fundamental concept like repetition is grasped, it’s much harder to lose than one random word here or there.  So repeating is a step in this journey- he doesn’t necessarily know the reason he is saying all of these things (although I think he knows for many of them) and he requires prompting.  As his speech pathologist Carla was telling me, we need to use these “action words” with him consistently now, so every single time we get to a door, I need to kneel down, make sure we establish eye contact, and say “open” until he says it too.  Same at the car door, and then “up” before he gets in his chair.

We have been saying the words like this, but now that we can truly get his attention, it takes some more, well worth it, work.  To make sure the joint attention is there. 

Right now, it feels like I have won the lottery each and every time he says a word.  All parents are thrilled to hear a new word from their child right?  Imagine waiting 4 years to hear bye bye? Or up?  An average person on the street would think I am nuts the way I jump up and down, hug Nate, and nearly cry each time he verbalizes something.  Not nuts, just very very grateful. 

So to every mom and dad of a “neurotypical” little one, and to my beautiful little sister who is soon going to witness these events with her own son, I say this.  Do this for me- just humor me.  When you hear a first word, or a new word, or see your child point, after you celebrate, which you should, repeat what I am saying now (to yourself, please not out loud- you might get a few looks lol).  This is a MIRACLE.  This is MAGIC.  And no matter how difficult it is sometimes, (and speaking as the mom of another child who never ever STOPS talking I know just how difficult it can be) don’t let yourself take it for granted. 

That’s one issue I don’t have with Nate.  I take none of it for granted.  I am an emotional wreck tonight after all of the things I have heard him say today.  I want to go shake him awake and make him talk.  I want to pinch him, wake him up and make sure he will still repeat “up”.  I want to line up all of his snacks and repeat over and over again what each one is, just to see if he will say it.  I want Jack to annoy the crap out of him just to hear him say no. 

Instead, I will just say this little prayer tonight:

First, thank you God.  This is amazing and I am in awe of what my little boy can do.  But, please God, please let this be it!!!  Please don’t take this away from him- again.  His mama couldn't handle it. 

See this face???  That little look?  Little stinker's been holding out on us!  The jig is up buddy!

Monday, 6 January 2014

Having The Rug Pulled Out From Under Your Child: Yet Another Reason To Detest Drug Companies

I am pissed.  That’s putting it mildly.  My kids have enough to deal with, they don’t need further obstacles put in their way.

But that is exactly what is happening.

My biggest issue right now is with the Namenda trial Jack is enrolled in.  We have been at the Children’s National Medical Center site for the Forrest pharmaceuticals study of the use of Namenda (a dementia medication) in the treatment of autism.  Jack began this study in May of 2013; he couldn’t start sooner as he was not old enough.  We went through multiple visits for preliminary testing, then every 2 week visits, then finally monthly.  The study has been run poorly by this company the entire time- they progressed to a “new phase” giving the researchers (at 20 sites in the US mind you) 2 day’s notice to see ALL of their patients.  We have been called back for blood work when they forgot to ask for ONE tube of blood- this is almost a 3 hour journey round trip in traffic.  We have gone for visits at ridiculously inconvenient times, including coming home during rush hour from DC in the direction of the beach on a Friday in August.  That was a blast.  I dealt with being chastised for “frequent absences” from work and made the difficult decision to file for FMLA for both boys, something I should have done long ago, but resisted- it was a pride thing.  I worked my ass off to make sure that I took no more than my allotted hours off, never went over them, but it didn’t matter, because the fact that I took them one day at a time for appointments, etc., created many “incidents” which apparently looks bad.  So I had to protect myself, my family comes first, end of discussion.

But all of this was ok.  I chose to do this study because I wanted to leave no stone unturned when it came to helping the boys.  This medicine is milder than ADHD meds, i.e., Jack didn’t fall asleep 5 times a day or scream when I left him in his room at night, his focus was maybe a little better, but it’s hard to say.  It was a mild difference and honestly could be that he’s just maturing.  So I wasn’t even sure the medication was helping.  But about 3 weeks ago he finally reached the weight cut off and we were able to double his dose- effects may not show for about 8 weeks, so we have been hoping. 

And then?  Rug=pulled.  Forrest decided that they have enough data from other subjects and ended the study.  This is NOT the same thing as ending enrollment, or not taking on any new subjects.  No, they decided to pull all of the kids off of the medication, whether they completed the study period or not.  I am livid and feel that this is extremely unethical.  If the study period was set for 2 years, it was for a reason- this is what we signed up for, this is what we put our children through numerous blood draws, ecgs, and developmental tests to achieve.  This is what caused me to miss so much work.  Every family in this study worked for it.  And now it’s just over.  We went for our “final” visit today- 2 hours of testing (which I frankly considered refusing multiple times) and Jack no longer has the medication.  No weaning, nothing, just done.  So even studies that are there to “benefit” our kids will only benefit them if more data is still needed??? 

Now I am FURTHER refining my criteria for any future studies.  It’s pretty specific.  NIH or center based studies only.  Never again will I subject my child to a study run by a drug company.  They clearly gave no consideration to the subjects as actual people- children.  And it sickens me.  I had to work really hard to be kind to the researcher and nurse today, even knowing that it is totally not their fault.  It is totally out of their hands when the study is “closed”.  But I don’t know that I could work under those circumstances- they have developed relationships and trust with these families, only to withdraw support with no warning.  Awful.  They did tell me that I could ask my pediatrician if they would prescribe it.  I already had, and she said that if I wanted to continue it, she would research it and prescribe it for us.  We are lucky though- we have an amazing pediatrician who is very forward thinking.  That is not the case for many other children.

Between this and our insurance company’s continued denials of both boys’ OT for habilitative services/with an autism diagnosis, I am on the war path.  I have given Cigna IN WRITING, the policy 3 times.  They didn’t develop appropriate coding for the procedure- a rep told me.  Guess what?  Not our problem.  Find a miscellaneous code, and suck it up.  They had better get their asses in gear and quickly as they literally advertised these services in the open enrollment pamphlet for 2014.  I may have been the only one who found out about it for 2013, but it’s common knowledge now.  The HR representative at my husband’s job was to call Cigna and get this fixed, as I know if I call again it will not end well.  Meanwhile, my boys missed their appointments last week.  Because of insurance denying covered services. 

So basically, if you use private insurance you’re screwed, if you go the study route, thus avoiding the insurance debacle, you are also screwed.  Love it. 

Thursday, 2 January 2014

Our Christmas was Just "Beachy"

Once again I find myself saying, it’s been awhile.  It’s been a crazy, lovely holiday season, and when I woke up on New Year’s Day, I thought, “whew, we made it”.  Intact.

We went to the Outer Banks in North Carolina again this year.  We are lucky enough to be able to go stay there, and it is a great time of year to go if you want to avoid the sensory overload that beach season can bring.  I mean, Hatteras Island is all but deserted this time of year, there are a few families who come down for the holiday, and the local residents, but it is quiet with a capital Q.  In fact until the last week before the holiday we didn’t even know if we could make it down to the house as one of the main bridges was closed.  It reopened in time, thank goodness. 
Packing for the trip is pretty involved, and would be even without worrying about Christmas gifts, a small, tree, Christmas crafts, etc.  Two kids with special diets and only one small grocery store on the island can kinda lead to some challenges.  We have discovered that there is a Harris Teeter a little further up in the Outer Banks and actually ordered a Christmas dinner from them this year- that cut down on the scavenging quite a bit. That being said, we took a huge cooler full down with us, mostly of the kids’ food.  And coffee creamer- the important stuff- of course in my hurry, I forgot the COFFEE.  Oh.  My.  God.  I got the look of death from John on the first morning when it hit us that we had zero caffeine.  I found coffee- quickly.  Good thing because Jack was up by 5:30 every day of the trip. 

This time over the holiday has become sacred to our family.  There is no therapy, there are no appointments, or assessments.  There is just family time.  Time to do “those things”, you know, the ones you always mean to do, but find yourself too busy to get to.  Like building a gingerbread house and taking the time to let your child with major fine motor issues place each of the candy balls wherever he wants it.  (once again, NEED COFFEE).  I mean the candy balls that don’t accidentally fall into his mouth of course.  Or write that letter to Santa with no rush so that  Jack can take his time and actually do most of the writing.  Just typical mom/kid stuff, stuff that we sometimes miss out on due to the pace we try to maintain on a day to day basis. 

The first two days we were at the beach it was freakishly warm.  Mid-70’s in December!  Jack was wading in the water and eventually I got tired of rolling his pant legs up and let him run around in his underwear.  He laid down in the sand and made “crustacean angels”, sea turtle mounds, and at one point we looked over and he had written his name in the sand without us prompting or even suggesting he do it.  AHHHHHHH!!!! That was awesome! 

 While it was still toasty we took the ferry to Ocracoke, a little island at the end of Hatteras.  It was a pretty ride, and I am really glad we did it then, because it already felt pretty cold.  Unfortunately, Nathan gleefully threw his cup into the ocean (because that’s what he does) and Jack had a meltdown of massive proportions.  I was literally afraid he was going to throw himself overboard- he still mentions this incident from time to time, he is incredibly worried about where the cup is, who drank the juice, if Nate will ever see it again….we gave the people on the ferry a little autism education that day.  We caught bunches of stares while he was screaming, but I find that I am not embarrassed these days, it ticks me off.  I want to yell, you come do it, let me know how it works out for you!  It doesn’t take a genius to realize that while this boy was yes, freaking out, he wasn’t throwing a tantrum, he wasn’t begging for something, he wasn’t being naughty, he was worried about his brother’s cup and it was causing him a great deal of anxiety.  Not. His. Fault.  And not ours either.

Anyhoo, we also hit the Wright Brother’s memorial again this year, as it is one of Jack’s favorite things to do.  He did so well at the museum, as did Nate.  There was even a bit of brotherly interaction, which we are seeing more and more lately it seems.  Nate is more receptive to Jack’s advances, and it makes Jack so happy.

In terms of Christmas itself, it was nice.  I missed my parents and my sister, who live near enough these days that I can actually see them.  In other words, I am starting to feel like I may be ready to stay home for the holidays at some point.  We shall see.  Jack was thrilled with his gifts- especially his stuffed colossal squid, and Nathan was annoyed that we woke him up early.  He did eventually open a few gifts, and even played with some of them, which was really exciting for me and John. 

All in all, it was a great holiday.  We spent time with our families the weekend that we got back and I was surprised (read:  shocked!!!!amazed!!!!) to find that my mom had painted our master bedroom secretly while we were gone.  We had talked about doing it together this spring, but she managed to find out the color I wanted by sending my baby sister as a spy, and she just ….painted it!  How awesome is that!  And what a nice thing to come home to!  I will have another, not so happy post in a day or two, but I need to cool off first.  Here, let me give you a hint…, and also….Jack’s study.  Let your imagination run wild J And another post....about Nate, and saying bye bye, and night night, and no no to Jack....yep it's been awhile.  Sorry about that.