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. 

An Event Not To Be Missed- Avergan Hush-Hush Speakeasy!

I have mentioned this foundation in the past, but wanted to elaborate a bit and share an upcoming event that should be lots of fun!

https://www.eventbrite.com/e/avergan-foundation-hush-hush-speakeasy-tickets-10796810551?ref=ebtnebtckt

Avergan Foundation- they are a godsend to Anne Arundel County in Maryland.  Their primary purpose is to provide scholarships to Cisco Center, which is where Nate goes in the afternoons.  They have also started a new program to provide date nights to autism parents, which is something that rarely happens in our worlds (trust me- our last one was our anniversary last December).  I have touched on how much I love Cisco Center in the past, but also mentioned just how difficult it has been for us to send the boys there.  They provide amazing services, but of course those services cost money, and rightly so.  It's the crux of the special needs parenting situation- you want the best for your kiddos, the best costs money....which, well, you don't have, because your kids have special needs, and everything they need costs money.
Description from Avergan website:

Cisco Center is a non-profit education center serving children and families with special needs.  Their Special Needs Intervention Program focuses on developing a child’s individual needs in the areas of: Early Childhood Academic and Readiness levels, Speech/Language Therapy, Oral Motor Skills, Eating/Feeding Skills, Socialization Skills, and Fine Motor/Gross Motor Skills.  They specifically handle children with Autism, Communication Disorders/Delays, Sensory Processing Disorders, Social/Emotional Delays, Oral Motor Disorders, Down’s Syndrome, Behavioral Disorders and Attention Deficit Disorders.

Cisco Center serves about 100 families a year, but there are never more than 10 to 15 children in the center at one time.  They maintain a 1:2 staff to child ratio and sometimes 1:1, if needed.

Their programs are amazing and the success stories and personal stories of Cisco and his wife Carla, and the impact they have had on so many childrens’ lives is astounding.  But, this type of service does come at a cost and some families are not able to afford to send their child to the center as much as they would like, or even at all.

This is where Avergan Foundation can help!  We will be providing a scholarship program to help ensure that families that want to come to Cisco Center will not be impeded by financial limitations.
http://averganfoundation.org/ourcauses/2-scholarships-to-cisco-center/

Avergan is helping to defray some of these costs for families.  They are providing scholarships for little guys to go to Cisco, and these kids are now getting services they they weren't able to have before.  For instance, our Nate was not able to have private speech for several years.  Our insurance would cover only 60 sessions of combined speech and OT each year, and frankly 60 sessions was not enough for OT alone.  He really needs to go twice a week, this is one of the areas where he struggles the most.  I recently was able to take Nate in to speech at another center because of the new habilitative services mandate in Maryland, although don't ask me if our insurance has actually paid any of these claims because you may actually see smoke come out of my ears.  Literally.  In any case, the only time they had an appointment available to him was at 1pm on Wednesdays.  So this mama was taking her lunch break, grabbing Nate from Cisco Center (away from the speech pathologist he has known and loved for over a year) taking him to the new therapy center and watching him scream and throw himself on the floor for an hour, then taking him back to Cisco where he would do more of the same.  Gotta love routine changes for our kids.  How productive was that?  Avergan stepped in.  Now Nate is able to have his speech sessions with Carla at Cisco, thanks to a speech scholarship.  And he is actually getting something out of it.  And frankly, mommy isn't going through hell torturing her poor son every Wednesday either.  This may seem a small change to someone not experienced in this area, but to us, it is huge. 

Please come out and support Avergan!  Have a look at this event- it looks like it will be a blast- but more importantly this is a cause so very near and dear to my heart.  It's going to be a long time before the standard of care for these kids catches up to what they actually need- this foundation is trying to bridge that gap- please support their efforts!

My "Dirty" Little Secret

Warning, this post is NOT about autism

For all of the other closet smokers out there.....

I quit I quit I quit!!!
quit quit quit quit quit!!!

I even used an app, not that it made it any easier, but here are my stats:
I quit smoking 2 months 23 days 20 hours ago. I did not smoke 828 cigarettes and saved $322.10.
I was a "college" smoker, that turned into a twenties smoker, who quit after I got married.  Two years ago, life SUCKED.  I was in one of the worst places ever in my life, and I picked up an old bad, comforting habit.  Luckily, I eventually became disgusted with myself.  Because, for the first year and a half I kept running through this- hey, don't judge.  At least I was exercising, right?  Anyway, then I hurt my back, and had to take a break.  And I couldn't get going again, because, well, I couldn't breathe. 

So....I quit!  I really don't get tired of saying it, sorry.  But of course I immediately gained 10 lbs.  Like in two weeks.  It was really disheartening.  Sooo....I started the 17 day diet- I am on phase two, and lost all of those 10 lbs.

And I started running again.  I am on week 5 day 3 of a 10 K training program.  And I can breathe.   

I.feel.amazing!!!!
OK, I'm done

Memantine and Autism- An Update and Comparison to Aricept

I woke up this morning to discover that my post Memantine:  One Week In, http://jackandnatesmom.blogspot.com/2013/06/memantine-one-week-in.html
has become my most frequently read post ever.  What this tells me is that parents are desperate for information on the drug and interested in trying it in their children with autism.  Unfortunately, the study that we participated in was prematurely (to us) closed because Forest Labs "had enough data".  So they screwed the families that had committed to the study and spent countless hours doing assessments, lab work, interviews, and ummm....driving.  Not that I'm still bitter or anything.

So here is some info on Namenda I posted right before we started the study:
"Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising. 

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored."


OK, so the first thing that comes to my mind is, wow, they kicked like 700 kids off of this study early????  That is insane.  Makes me more angry than I already was.

In terms of Jack on Namenda- I know that one area of interest for this medication is language.  I cannot really speak to that with regard to Jack- his language is excellent and has been since he was about a year old.  He is hyperverbal if there is such a thing- although quite a bit of it is quoting.  Our goal was to work on sensory issues and social issues.  It is hard to look at the progress with Jack, as one has to look past his penchant for perseveration, which frankly is really hard to do.  To look at social interaction with Jack, one would have to catch him in a moment when he is not busy spouting facts at you about his current area of interest.  The fact that this has not changed I guess is one telling piece of information- this drug has definitely not impacted his obsessiveness.  AT ALL.  The mood swings?  It hasn't effected that much- although I will say that when he was removed from the drug at the study cut off, he experienced a period of really labile behavior- so much so that our pediatrician prescribed the medication for us- so far the insurance is covering it.

Social-  Jack continues to struggle with this aspect of life.  When we are in a calm moment we have definitely noticed that he is better capable of carrying on a back and forth conversation.  These are brief moments, but they are there, which is better than in the past.  As he gets older (and his peers get older) we are already noticing a decreased tolerance for his constant talking and how shall I say, "information sharing".  We are working really hard at redirecting, but I'll be honest, his will is MUCH stronger than ours.  He has worn. us. down.  I almost fell over laughing the other day when Jack was telling our next door neighbor some fact and then asking him if that was right.  Our neighbor said "exactly like that".  That is one of the few responses that satisfies Jack and one that John and I have said in unison many a time.  Since he has taught us the appropriate responses, clearly he is now moving on to our neighbors.

Attention-  He struggles with this the most.  Which always intrigues me.  How can he be soooo hyperfocused on some things and yet be unable to attend to something as simple as 8 spelling words for more than 30 seconds?  He continues to require constant guidance and redirection at school by an aide- we have an upcoming IEP meeting and if there was any suggestion of changing this I would likely pass out.  At some point we may have to bite the bullet and try another ADHD medication, but I am terrified after our initial experience.  Jack is very sensitive and I just don't see it ending well.

There have been some bright spots- I have seen more empathy from my little boy this year without question.  He saw a child in a wheelchair and cried because he couldn't walk.  One day I caught him crying in the back seat, and he asked me to change the song.  I assumed that the sound was bothering him (sensory)- but when I asked he said "no mom, it's a really sad song".  (Pink- Just Give Me A Reason)  That is very new.  He tells me more about his day now- he tells stories.  His day is no longer "in the vault" as it used to be.  But here's the thing- it's been a year, right?  Who's to say that this isn't development that would have occurred without the namenda?  How can I draw any conclusion based on these small changes?  The truth is that I really can't.

For us, Namenda is not "the answer".  Did we have some baby steps?  yes.  Was it because of Namenda?  I doubt I will ever be able to answer that.

I do want to mention one other thing- which is Nate and his Aricept study.  With Nate we ARE looking at language.  I would estimate him to be at maybe a 16-18 mo level when it comes to receptive and expressive language.  I will have a more exact number after our next NIH visit, which is the second week of April.  He will also stop the medication then, and they will continue to monitor his development for the next year, to see if there is any long term increase in REM sleep from this short period of giving the medication, and how it affects his development. (Mommy is really worried about the medication stopping) Now, keep in mind that we are also treating chronic infections in Nate right now, and we have seen marked improvement in his engagement since starting antibiotics and antifungals.  That all being said, we have seen an increase in speech with Nate.  I can say that definitively.  Not only does he have more words, but he also seems to get the concept of repeating.  If you ask him to say something, he quite often attempts it.  This never happened in the past.  He also, for lack of a better way to say it, follows commands more consistently.  He claps hands, stomps feet, puts on his coat, goes to the door when I say it is time to go, says bye bye consistently.  When we walk to the door, I say "open door" and he says "open".  When we get to the car, I tell him "up" and he says "up".  If he is ready to leave he says "go" spontaneously.  He says "I want", however the item is always "fry inna".  No, we don't know.  But if we work with him for a few minutes, and makes suggestions he will usually identify which food item he wants (chip, chicken, toast, etc).  Which means he also attempts to say these words- chicken is "wicken" which is just so cute.  He is more opinionated about say, the programming on tv.  Let me rephrase- he throws a fit if he doesn't get what he wants.  This is all since about December.  I can honestly say that if I had the option to try either namenda or aricept, my choice would be Aricept, hands down.

Here's a little food for thought- these two medications have actually been used synergistically for alzheimer's.  http://www.alzheimersreadingroom.com/2009/08/does-combination-of-aricept-and-namenda.html

http://news.frx.com/press-release/rd-news/jama-reports-alzheimers-patients-treated-combination-namendatm-memantine-hcl-a

Interesting, right?  So those are my thoughts for now, for what they are worth.  It's all anecdotal obviously, but I consider myself to be fairly observant in general, my assessment skills as a nurse are pretty well honed, and well, when it comes to my kiddos, just call me eagle eyes.  :-) 

Tsk Kristen Cavallari- You Stirred Up Quite the Hornet's Nest- Guess What? They Sting, Kinda Like a Needle

The Hills are alive with the sounds of shrieking parents....can you hear them??  "NO NO NO NO!!!!"  All parents.  Whether pro or anti vaccine, one theme is consistent.  Kristen Cavallari is NOT affiliated with us!  Of all the "poster children" to come forward.  Sigh.....

http://www.usmagazine.com/celebrity-moms/news/kristin-cavallari-didnt-vaccinate-son-camden-fears-autism-2014143


I watched the Hills, I was nursing my babies and in the middle of the night shallow, fake drama was right up my alley.  My mental capacity was greatly reduced in those days, it was a perfect fit!

I really really wish she hadn't said what she did.  If  I had to choose any representative of any cause on the planet, it would not be her.  I don't know her, I don't dislike her, but I do know her public "persona".  She has always been shallow, catty and lacked direction on her "reality shows".  They were fake reality and I get that, so maybe she is extremely intelligent, she certainly has the financial means to have a top notch education.  But she took a job, in which she was portrayed as an airhead.  So please don't speak out against vaccines Kristen Cavallari.  I know you had NO idea what you were getting yourself into.  This is one of the most heated debates in the world, and one that your nose really really needed to stay out of.  Especially if your explanation for not vaccinating your children was going to be that you have read way too many books on autism, and vaccines still have a bunch of "mercury and stuff".  Somehow, you managed to insult people with autism while simultaneously enraging the scientific community who swears up and down that vaccines are completely safe.  That's quite a feat.  Truly.

Vaccines do not have mercury or thimersol anymore.  Except the flu shot- it still has mercury.  My kids' pediatrician recommends against it.  Vaccinations have aluminum, get it straight.  Because apparently that's a safe heavy metal.

I am not going to get on the vaccine pro/con bandwagon in this post, I am not, I am not.  Oh screw it.   I have my beliefs, my children are fully vaccinated.  Knowing what I know today they would still be fully vaccinated.  Would I have requested a more spread out schedule?  Why yes, I do think I would have.  I do think it would have been more gentle to my boys' delicate immune systems that based on genetic testing, have an impaired ability to clear toxins.  Even in this circumstance, vaccines are there for a reason.  Has anyone been watching NBC's documentary on the refugee children of Syria?  Has anyone seen the little boy who has all of the symptoms of polio?  I wouldn't wish that on anyone's child, it's just horrible.  And we all have a social responsibility to try and prevent the spread of such horrible illnesses.  Unfortunately, when it comes to this topic, when debates are started it is black and white.  You do it.  You don't.  Not vaccinating, is a risky road, in my opinion.  Unless there is a specific medical reason, unless there is a known genetic issue that makes it dangerous to the child.  That's different.  Blindly stating that you are not going to vaccinate your child because you are "afraid" of autism???  Not ok.  Do you know anyone with autism?  I do- two amazing someones.  I wish they didn't have autism, it makes their lives extremely challenging.  But autism is not the bubonic plague, it's not polio either.  You can't die of autism.

Ever since I did my reading about vaccines, I have taken the middle of the road approach.  Ask for them one at a time, ask for them preservative free.  THAT is thinking.  THAT is protecting your child in every way possible.  THAT is avoiding your child getting a Hep B vaccine when they are 24 hours old and watching them scream for over 24 hours after ward and consequently wondering for the rest of your life what that did to your son.  Vaccines are absolutely necessary, I do believe that.  I believe in moderation.  I don't understand why one has to be pro or anti.  I mean, I guess a am pro?  Or semi-pro?  Or amateur?  Or maybe I am pro but with an IEP???  Mom will ensure that child completes 3 out of 5 recommended vaccines within the next 6 months with zero prompts.

Anyway- Kristen, you have bitten off so much more than you can chew.  I think you should have your son vaccinated, slowly and with research.  That is my opinion.  Might as well throw it out there since you are going to get everyone else's too.

High Functioning Autism: Yes Jack Can Speak, But He Struggles In Many Other Ways

My friend Joann and I have talked about this several times lately- the fact that parenting Jack is infinitely more difficult than parenting Nathan.  It doesn’t make intuitive sense.  Nathan is clearly way more affected by autism than Jack, or to an outsider, it may seem that way.  Honestly, I don’t think it’s so.  I think Jack’s life is impacted severely by his autism.  As he gets older, it’s getting harder and harder to watch.

The issues that Jack faces are considerable, but of course when one looks at the fact that Nate cannot yet communicate well, that he is so impacted every second of every day, and Jack is in mainstream first grade, it may not seem that way. 

I want to make it clear that I am extremely proud of my boy- he was recently “dismissed” from his special needs reading group, which mean he has caught up to his grade level- how huge is that?  Especially for Jack.  I talk about all of the “noise” that there seems to be for Nate, how many distractions there are in his own little head.  The same is fully true for Jack.  When John and I went away for a night last year it hit us just how quiet our hotel room was- that is because both of the boys almost continuously hum.  It’s verbal stimming.  Jack also does quite a bit of physical stimming- jerky movements, still some flapping of his arms, lots of jumping.  I’ve grown so used to it, that I forget how significant it is until we are out in public.  Do you ever wonder what your child must be feeling?  What compels them to do this?  I know they are seeking input, but I often wonder what that experience is like. 

Jack’s obsessions have driven me crazy for a long time.  When he talks about something, he TALKS about it- ALL THE TIME.  24/7, it never, never, ever stops.  He repeats the same things, lines of text or quotes from movies about the subject over and over again and then, since he is smart enough to know that you might tune him out, he requires you to respond to him.  He will repeat the same thing in your face over and over and over until you respond.  For a long time, it felt like John and I had lost our bond, because when we finally got Jack to sleep each night, we fled to separate corners of the house, really didn’t interact much at all.  It’s taken a long time, and lots of counseling and reflection for me to realize that we are running to opposite ends of the house because we literally don’t want to hear ANYONE talk.  Our ears are ringing.  RINGING.  It is that intense, almost all of the time with Jack. 

When someone new meets Jack, you can literally watch the progression.  It starts with “wow, he really knows a lot about blank, he must be really smart”.  Then a few minutes in, there is the amused smile.  Fast forward a few more minutes and the smile is frozen on the person’s face.  This is not to say that they don’t like Jack, but that they realize he is not going to stop.  And he doesn’t.  I can redirect him a million times; it has little to no effect.  It is really, really hard.  And the thing is- he is not being naughty.  He is rarely naughty.  How do you scold a child for something that they cannot control?

This impacts Jack’s life and well-being greatly.  He is happy in his world, I think.  But the more and more I watch him, the more it breaks my heart.  How must this feel?  To feel literally incapable of thinking about anything else?  To be this compelled to talk about the same thing, use the same words, over and over, to never feel satisfied or done?  If his words are this intense, how intense are his thoughts?  I don’t think I could tolerate living that way. 

And he is, Jack is living with this, and is in mainstream first grade.  It causes many issues for him.  He has a full-time aide to help keep him on task; this includes his walk to and from the bus.  He struggles to complete his work and quite often doesn’t. 

And socially?  He has been invited to two birthday parties all year.  One party was for a little boy he met as Cisco Center last summer, one for an old friend of mine’s daughter. So, in fact he has been invited to no birthday parties by kids at school.  He told me for weeks that one little boy was his best friend at school, but then in a moment of conversation, when he was really sharing with me he said that the boy told him that he sometimes likes him, but that he won’t invite him to his birthday.  Broke my heart.  He does not recognize these social “snubs” for what they are, but I do.  And I want to help him, but how?  I work full-time- I wish I could be in the classroom volunteering and keeping an eye on how things are going from a social perspective, but I can’t.  I wish I could be that mom that has time for play dates on a regular basis, but I’m not.  Most of my friends at this point are in the special needs community, which makes perfect sense considering our situation, but those are the main people who we socialize with on the weekends.  I mean, Nate has a birthday party to go to at least once or twice a month, because ALL of the families at his school are special needs families and we all invite all the kids- because we know what it’s like not to be invited.  It’s because Jack is with typical kids when he is in fact, not typical, that he struggles in this way.  He may not feel the impact now, but at some point, I am sure he will. 

So even though Jack is functioning, with assistance, in mainstream school, his struggles are many and significant.  I sometimes get caught up in worrying about Nate and lose sight of this, so I guess I am giving myself a bit of a wake-up call here.  It is so hard to strike a balance with these two kiddos with such different, yet substantial issues.