Autism, Limited Speech, and Potty Training.....Oh My

This special task can also be described as driving yourself to the brink of insanity all while making your sweet four year old sick of your face.  Or, in my case it could also be called what I did on my very brief summer vacation.  Sigh. 

I have been psyching myself up for this for months.  I have read so many books, not on potty training typical kids, but on potty training special needs kids.  OK, I just laughed my ass off at myself.  I just said “I read so many books” with a straight face. Ha.  I will never forget when my brother in law and sister in law were first pregnant I took a bunch of books we tried with Jack over to them since we weren’t using them anymore.  I think I kind of shocked them with the variety of topics.  It never occurred to me that maybe, just maybe, it was an absurd number.   That maybe most people get, What to Expect When You’re Expecting, and they’re done with it.  Oops.  We had like 30 books by then, I only brought a handful.  Most were about getting your baby to sleep.  Ask me if any of them worked.  So excuse me while I laugh at myself for a moment. 

Anyhow, I read books, my mother sent me a “helpful” power point (sorry mom, but well, ha), but really what I needed to do was steel myself emotionally for quite a process.  It is a well-known fact that kids with autism are extremely difficult to potty train, due to sensory issues, developmental delays (i.e., lack of control of bodily functions) and difficulty communicating.  Nate’s biggest issue is definitely the communication aspect.  We had super difficult sensory challenges with Jack, and we do not have those with Nate, so I can thank God for that.   I developed my “plan” and scheduled a weekend to start, then took the following Monday and Tuesday off so that Nate and I would have 4 solid days to just stay home and work on this with no interruptions.  I resolved to start with taking him every 15 minutes.  Yes, you heard that right, every 15 minutes.  My goal was to try and catch him every single time he went and reward and praise him copiously, thinking that the more positive reinforcement I was able to give him, the more the concept would sink in.

Well here’s the thing, my kid is a camel.  The child pees 3-4 times a day TOPS.  And no I am not kidding.  And still, with every 15 minutes (ok, well we increased to every 20 minutes after 2 days, with 5 minutes on the potty, then 20 minutes in between) we had….drumroll…..4 pee pee successes in 4 DAYS.  4.  4.  I said 4.  And mommy was entering a type of potty psychosis that no one ever wants to see.  Ever.  I am a very goal oriented person and was spending quite a lot of time blaming myself for “missing” opportunities, when in reality, I’m pretty sure Nate was sneaking away to go. I ended up with one of the worst migraines I have had this year.   On the third day, I found a video social story that made a big difference for us.  I am not going to say it will make a huge difference for everyone, but Nate is an extremely visual guy, and my concern was that despite all of the hoopla we were making about the potty, all the books, all the demos, etc., he didn’t understand what he was actually supposed to DO on the potty. This app gives you the opportunity to make the child look like him, and has the child walk through the potty steps, and it uses language that is very much on his level.  He loves to watch it, and I think he understood a bit better after this. 

http://www.avakid.com/

On Wednesday, I had to take him back to Cisco Center, I had to go back to work, and I really just didn’t have any choice.  I put him in a pull up and talked to the instructors, who agreed to at least try the potty once an hour.  I had zero expectations and figured we would just try again over the weekend.  And then at about noon I got a text---- “success!”  And I burst into tears.  When I went to pick him up at about 3, he hadn’t gone again the whole day- typical Nate- he had an accident the minute we walked in the door, but frankly I didn’t care.  The next day, he went right before we left the house, and around noon I got the same text “success” again- picked him up at around 4 and he had been dry all afternoon- got him to the potty right after we walked in the door and WE had success again!  Then success again before bedtime.  Which means….he stayed dry all day!!!  Now he had an accident yesterday, and I don’t anticipate we will be consistently dry for quite a while, but he is showing signs that he is “getting it” and we will take it.  And we will keep going- hourly for now.  And I am just going to have to chill out.  If we miss an opportunity it is not the end of the world- this is a marathon not a sprint.  We will get there.  

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/

noun 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.

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

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? 

Nate's Next Stepping Stone On The Path To Speech

Nathan will be starting the extended school year program in just a few weeks.  He will go back to the same site he went to last year (but not the same school he goes to during the school year) and that got me thinking.  How will these teachers and therapists, who likely worked with him last summer, view his progress?  I mean, I have a hard time gauging it myself, but I see him every day.  These people have gone almost a full year since they last saw him.  What will they think?

And then I smiled.  This year, for the first time, I would like to go in and see the looks on their faces.  This year, for the first time, I know that they will be looking at a child that has made progress- and it will be my son!  Is he still stimmy?  Ummm, yeah he is!!  Is he distracted?  Oh yes.  Does he notice the other kids?  Rarely.

Did you notice I just said rarely?  Last year that answer would have been NO.  I have caught him looking at Jack lately- especially when they are swinging together.   He will watch Jack’s face while he swings.  And he smiles.  OK, that makes me teary.  This is one of their first positive interactions.  John and I noticed it the other day, and we were both like “look, look!!!”  HUGE for him. 

And the words, oh the words!!!  He can say anything he wants to.  He can repeat any word that I tell him to.  He can say mama, hi, bye, go, open, all done, eat, drink, no, I want, bath, I don’t want, “Lawrence”, “gwen”, night night, gra (for grammy), chicken, chip, cookie, pi (for pizza), meat, dog, fish, watch- and many more.  And he gives the most incredible hugs and kisses.  They will be stunned by all of this.  I am stunned by all of this.

There is a much needed next step for Mr. Nate.  And that is USING these amazing words that he can now say.  At this point, if he wants something, he will still say “more”.  And we have to go through a list of possibilities.  If we say “eat” and that is what he wants, he will respond with “eat”.  But when we get to the cabinet, he just says more again.  If I say “cookie” and he wants cookie he will say it- if not, he literally pushes it away.  Same with any other food.  Now we have to get him to use these words spontaneously.  It’s a big transition and can use his pecs as a tool- so he can hand us the picture of what he wants, or even point.  Sometimes that works.

And like all autism parents there is that paranoid part of me.  Is this going to go away?  If I stop feeding him the words, will he lose them?  He has lost so much so many times before.  I can’t take watching it happen again.  So it takes a lot of strength to withhold a word from him. His speech pathologist at Cisco Center, Miss Carla, will stand at the door with me and I want to say “open door” and make him repeat it.  She wants me to just stand there and wait, or state “open door” and not do what I do, which is  say “say open door Nate”- which then makes him do it.  It is a very small difference and those of you with regular old verbal kiddos may be reading this and saying why the heck does it matter?  I say to you- I totally get it!  If someone had talked about this when Jack was my only child I wouldn’t have gotten it either because Jack would have stood at the door shrieking “open door” like 5000 times and interrupting our conversation.  It is a totally different world.  Carla is 100% in the right.  She can view it from an objective angle.  I on the other hand cannot.  I view it from a fearful, anxious, maternal angle.  I want him to make this leap so badly.  But it took him sooooo long to get to where he is, and a bigger part of me wants to just continue to hear these words even more.  I prayed for these words, I begged for these words.  I sat in front of him saying them over and over and cried so many days because I didn’t hear these words.  And now- because I am a good mommy and I love him- I need to stop trying to get him to just repeat what I am saying- I need to work on functional speech.  Deep breath…ok, I can do this.  It will have to be in small steps.  I do not want to take away his current, relatively new, ability to communicate, even if it involves my assistance.  We can start with areas where he is super motivated- food (he is our kid, ha).  And we can take the next step.

The Scoop on Nate- Latest Developments

First of all, to those of you who have donated to Nate's medical fund- I want to make sure I say thank you.  Some of you I don't even know, some I haven't spoken with since high school.  I can't begin to express how touched we are.  So here's what we know so far, I submitted all of the paperwork to take both boys to Dr. Usman; I decided it just made more sense to take them both at once, and plus, the last few posts that have been about Jack have made me really think about how much his life is impacted at this point- it's a lot.  I didn't hear back for quite awhile, so I emailed the office staff, who informed me that she hasn't gotten to our intake sheets (she will then decide if she will "accept" the boys- although when you have two kids with the same developmental diagnosis few practitioners can resist), but she also shared this pretty piece of news- new patients are currently being scheduled for spring of 2015.  Sigh.  I should have expected this.  It doesn't change my level of disappointment though.

So clearly, if you have met me you know that I am not one to sit twiddling my thumbs for one of the most important years of my child's development whilst "waiting" for an appointment.  Not going to happen.  I have been looking at other, more homeopathic treatments to try while we are waiting, and am very enthused about some options.  Maybe someday I will talk about this, but not right now.

About a week ago I decided to give Nathan a break from his diflucan and antibiotics.  He's been on them for two months with no break, and I worry about his little system.  Three days later I found him standing on his head (one of his major sensory seeking behaviors from when he was first diagnosed- we would find him this way in his crib).  Not a coincidence.  And further confirmation that an unbalanced gut and immune system are significant contributors to his behaviors.  This actually gives me hope though- that's the world I live in- I just want to know how to help him.  Even if it means confirming a new problem- who am I kidding, finding a solvable problem is a big victory.

He continues with school, speech, OT, Cisco Center, etc.  I think he is in a very good place with his therapies actually.  Working with Carla "officially" for speech (she was always "working" with him, just not one on one) is very beneficial for him.  Not only is she able to sit down and work on the methods that she employs during a session, but she is able to reinforce this on a daily basis when they are working in the classroom setting.  Consistency is key for these kiddos. 

Today he was playing with Carla a little bit right before we left- they were doing some singing and then peek a boo.  Nate literally said "I see you".  I heard it clear as day.  When these phrases pop out it's like winning the lottery.  The one unfortunate part of that is that recurrence is not likely (at least not in the near future).  But Carla pushes him- she is not afraid of pushing his limits, I think that is part of what makes her such an effective practitioner.  And even though Nate often ends up crying in frustration, he is always happy to see her the next day.  It's a great balance.  Anyway, Nate continues requesting things consistently at home- he will point to which cabinet the item he wants is kept in if verbal attempts are not effective.  I guess the point of this is that he is trying, he is really trying.  His repetition of familiar words also continues.  He is still working with PECS as well, but because of how much effort he is making verbally, it's hard to decide how much to use them.  I don't want him to get frustrated, but I don't want to take away the incentive to use words (since he seems to want to use them).  So we are finding our own balance, as I guess every family does.  He will say "watch" if he wants a program on TV.  We put on netflix and he walks over and points to the program he wants, and says "want".  This is great progress, especially since it doesn't involve his biggest motivator- food.  The other day, I was giving him a "grain free cookie" (don't judge, I am an awesome mom, lol), and I said "just one".  Swear to God the kid looked right at me and said "two".  Luckily John heard it too- so either I'm not crazy or we both are ha.

This is his last full week on the Aricept trial through NIH.  He will stop taking the medication next Friday night, at which time we will go through a battery of tests- developmental, blood, ecg, and a sleep study (only one night this time, thank GAWD).  Then they will follow up with us for the next year.  I have mixed emotions about stopping the medication.  His speech has definitely progressed in the last six months, and I do think that Aricept must have something to do with that.  On the other hand, we have been very consistently treating his yeast issues also.  The positive part of stopping the medication is that we are free to try other interventions.  I have held off on certain things because we didn't know if they would interact with Aricept.  So we shall see...either way, I would highly recommend NIH to any parent who is looking for cutting edge treatment for their child.  They have been an absolute pleasure to work with.  At least from mommy's perspective. 

And Just Like That- Nate's Back

It’s freaky really.  In a good way, but still freaky.  Nearly two weeks ago, Nate’s pediatrician agreed to put him back on the antibiotics and antifungals that he was on in December when he had a big burst of language and joint attention.  In the past two days, several people have told me they see a huge difference in him. First up today was the speech pathologist at the private practice where he is now being seen.  He wouldn’t cooperate with what she wanted him to do, but he used several words, and more importantly he was paying attention.  To the point where he did such a typical little kid thing that I almost laughed out loud.  He was screaming because he was angry that I picked him up early and took him somewhere as offensive as SPEECH.  Eventually he started to smile and play with the speech pathologist, and then he would realize what he was doing and his face would crumple and he would start screaming again.  He had enough focus to remember that he was supposed to be upset, not having fun.  I see little kids do this all the time- just never mine.  The speech pathologist noticed it too, and mentioned the fact that he wasn’t running laps like he had been before.  When she handed him a ball he stared at it (it was translucent) and said ball.  He did play with the ball and a little bird for a couple of minutes, but the session was only 30 minutes.

Again this evening, when I picked up Nate at Cisco Center one of the teachers mentioned that Nate seems different (and no she did not know about the medication changes).  In fact she said this- “remember like a month and a half ago when Nate was repeating everything we said and really making progress?  He seems to be acting like that again this week.”  I told her about the medication changes, and thanked her for letting me know what she saw.  It’s just so encouraging when people who aren’t aware of any changes in his treatment notice these differences.  It’s also confirmation that I am headed in the right direction.  I did, however, already notice it myself.

He is definitely repeating, he is definitely stimming less, although he still grinds his teeth painfully frequently.  And two days ago now, while I was changing his diaper before school he picked up his brother’s stuffed bird, handed it to me, and said “bird”.  I freaked- this child only names food objects, and usually not even then.  Usually it’s “more” “go” “bye bye”, etc.  He said bird!  Appropriately.  Then- while still holding the bird he said “bird fly”.  That’s all it took to turn me into a snotty mess.  He repeats this on command now, which is great, but the fact that he used the terms in the correct context means even more.  He has had several other new words with us in the past few days, and he is definitely more aware of his surroundings.  Get a load of this!

One other thing that I started with him about a week ago was grapefruit seed extract. 

http://www.ourkidsasd.com/products/9055%7CGrapefruit%20Seed%20Extract-Pure%20Encapsulations

Grapefruit seed extract is a highly concentrated fungal and microbial balancing extract. Grapefruit seed extract exerts these effects within the gastrointestinal (GI) tract, promoting healthy microflora and gut ecology. A preliminary clinical trial reported that grapefruit seed extract supplements helped support healthy GI function and comfort. An in vitro study using human skin fibroblast cells indicated that grapefruit seed extract promoted healthy gram-positive and gram-negative balance. Other studies support these findings, citing that grapefruit seed extract promotes a healthy environment when exposed to a wide range of bacterial biotypes.

We have tried this one other time in the past without much effect, but this time he is also on the antibiotic and antifungal.  I also ordered another natural supplement to try- CD Herbal

http://www.ourkidsasd.com/products/379%7CCD-Herbal-Kirkman%20Labs

CD-Herbal™ is a powerful hypoallergenic blend of herbal components that support gastrointestinal health by helping control undesirable gut flora. This product was formulated to be used with CD-Biotic™, a specialty probiotic designed to support healthy gastrointestinal flora when certain difficult bacteria have populated the gut.

Under certain circumstances and very frequently among sensitive individuals, certain strains of bad bacteria become concentrated in the gastrointestinal tract and are very difficult to eradicate using conventional probiotics or drugs. This is especially true if the strain of bacteria is a spore-forming organism. Spores of these types of organisms can lie dormant in the gut following various types of control procedures, only to repopulate when conditions are right.

CD-Herbal™ contains thyme, oregano and curcumin (turmeric) herbs, all of which can exhibit inhibitory support on harmful gut flora. It also contains cumin, an herb which stimulates the growth of the probiotic strain Lactobacillus plantarum, which is also present in CD-Biotic™ and instrumental in helping crowd out undesirable flora.

This hasn’t arrived yet, but it should soon.  Nate has also been on curcumin in the past with a little improvement, so I am wondering how he will do with this combination.  As you can see from the ingredients, it’s all very benign stuff.  I am doing these things while waiting for an appointment with Dr. Usman.  We submitted our paperwork last Friday, and thus far received an email response of two words- thank you.  That’s pretty much what I expected, knowing how busy the practice is.  I guess I will have to start my stalker mommy calls in the next week or so.  I feel like we at least have a reasonable plan in place until we get in to see her.

On that note, I just want to mention how incredibly touched our family has been by the donations we have received toward our trip to Illinois.  I mean, some donations are from people we have never met, people that I have never even spoken to.  We have also heard from people that we should not be hearing from, people who have enough on their plates without worrying about us.  There’s really nothing else I can say except thank you for your kindness and generosity.  And thank you for having faith that I am doing my very best for my children.  That is what means the most.

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.

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:

https://tspace.library.utoronto.ca/handle/1807/1649

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?

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!

Social Graces and Nonverbal Little Brothers

I haven’t posted about Jack in a while.  It’s kind of hard to explain, I guess the best way to put it is that he talks, he is in mainstream school.  While his progress may be a bit slower than other kids his age, he is managing and that is worth its weight in gold to me.   Nate has become my major project for obvious reasons.

Jack is in first grade- last year I came the closest I have ever come to fully asserting my authority as his mom, and as a result of this, and a wonderfully supportive staff, Jack is well-equipped at this point to accomplish the goals that were set for him.  Does he resist writing?  Like you wouldn’t believe.  Does he try to get out of reading?  Every single day.  “mommy, you start reading now”- and that’s after the first page.  But I know how to trick him into reading- he’s pretty straight forward- if you entice him with something that’s within his area of interest, he is actually pretty easy.  He had to “earn” wearing his Halloween costume to school- he was a world war II fighter pilot- extra math homework on the computer every night for a week.  He did it, and when he would start to complain, I would remind him of the costume and he was good to go.

His assistive technology “plan” is being put into place- he has a word processor available to him at all times, and he continues with a scribe for tests and longer assignments.  It has made a world of difference for him.  His aid this year was with him for quite a bit of the time last year, and you can tell that she is really looking out for him.  The same thing applies for his OT- and the special educator, while she is “new to us”, has been extremely communicative.  I miss his kindergarten teacher- I really felt part of the team when he was in her class because she kept me informed of any issues or challenges that Jack was facing.  It was a very comforting feeling.  This year there is quite a bit less of this, which is not a fault of his current teacher, just a different style.  It was more like this when Jack was in pre-K, and it’s fine, just takes some adjusting on my part.  It also keeps me from becoming a helicopter mom.  I made the decision to do minimal volunteering in his classroom for the same reason- it stresses me out sooooo much, and I know that having me there really interferes with his learning.  Not to mention, this mama is just a bit busy these days.  Jack is struggling a bit with math- which is also a challenge for me because I LOVE math and have a hard time remaining patient when he doesn’t “get” something. 

Most of the issues and major developments with Jack revolve around his social world.  His view of others is changing, his desire to be around other kids is greater.  This is awesome- but it comes in fits and starts and he really struggles with being appropriate in social contexts.  He has the tendency to take things too far, make other kids uncomfortable or annoyed.  He has had a few ahem, “conflicts” with a little girl at school, although I honestly think it’s more “flirting” than anything else.  I had to have several “talking to’s” with him, and even banned him from watching airplane videos one evening- that definitely had the desired effect.  I haven’t heard of any further issues in the last week or so, keeping my fingers crossed.  Jack talks about “friends” from school more these days, asks for play dates, etc.  He has also gotten somewhat attached to the school nurse, and seems to visit her for the smallest reasons- luckily she loves him.  Kind of cracks me up that when she calls she ends up gushing and asking me how I can ever “discipline” him.  I told her that after 6 years, the cuteness factor kind of erodes, ha.

The downside?  Jack is kind of fed up with Nathan.  He wants his brother to play with him, interact with him, or frankly at this point, just react to him.  And he really doesn’t- unless Jack really ticks him off.  So Jack constantly tries to annoy him just so that Nate will acknowledge him.  It’s not hard to know when he’s succeeded as Nathan, while “nonverbal”, has no problem with shrieking at the top of his lungs.  Jack has even asked for a “new brother who talks” on multiple occasions.  He insists on calling Nathan a baby and says he wants a bigger brother.  If John and I knew we could give him a neurotypical brother or sister we might just do it at this point.  Having a sibling who won’t engage at all is almost worse than being an only child in some ways- because they are right there, but not.  I feel like this is part of the reason Jack has trouble with peers sometimes- he doesn’t have a “baseline” of what’s appropriate, other than his buddies.  He tries to treat them the same way he does Nate, because he knows it will get a reaction, but of course this doesn’t go over too well. 

We need to do more play dates- my anxiety over his sometime inappropriate behavior should not stand in the way of this, but I am ashamed to say that this is sometimes the case.  I need to get over it, it’s just much harder than it sounds.  Which is why I’m ecstatic that a mom at Jack’s adaptive swim lessons who has I believe one son on the spectrum and one son with Down’s,  gave me her card tonight and told me to call her.  Jack made a little friend!  Good stuff.  Because the idea of having another child is more terrifying than I can even put into words- I don’t know if I am capable of having a neurotypical child and I feel irresponsible taking that chance.  I know that most of the girls on both sides of our families have been neurotypical, but I also know that I have had two boys, and have 4 nephews and one niece.  The odds are not in our favor on that one.  It’s not that I don’t “want” another child on the spectrum, I just don’t know that I am physically capable of doing all of the things for another child that I am doing for these two right now.  The thought of it makes me want to just schedule lots and lots of play dates, ha.

A Small Step for Nathan= An Awesome Day for Mommy

I haven't been mentioning Nate's "progress" much lately.  I don't want to jinx myself.  So I am still not going to go into much detail about what we are seeing or not seeing.  Instead I am going to tell you a happy little story:

When Nate was about 19 months old and Infants and Toddlers first came to our home for the initial therapy- the therapist was able to ellicit one word from him- she would say "ready, set", and Nate would say "go!".  Then he stopped.  Then he started.  Then he stopped.  He has done this off and on for the last two years, but it's been about 6 months since I heard it last.

I was feeling inspired to push him a bit this morning while we were outside waiting for his bus.  So I started saying this each time he was "gearing up" to run a lap. I dragged out the period between set and go a little more each time, and it did seem like he was pausing to wait for the word before he started running again.  So the next time we did it, I dropped "go" just to see what would happen.  Did he say it?  He sure did!  This alone makes me very happy, it's always nice to see something click, especially after such a lapse.  But it gets better; as we went on, he kept saying it, but he LOOKED AT ME like "lady are ya gonna say it?" each time before he finally said it.  He was totally checking in with me, and clearly he totally got the concept because he never ran before the word "go".  I know all the parents with nonverbal kids out there are cheering right now- in fact I think I hear them....

Short but very sweet.  Happy Friday!