Our NIH and Aricept Journey with Nate

I have had a few people ask me if Nate is ok, so I wanted to post quickly to say YES!  He was in the hospital at NIH last night as part of a study he has been participating in for the past 18 months.  Yesterday was his last of 5 comprehensive appointments (and I do mean comprehensive!!!).  The trial was testing a drug called Aricept, which is traditionally used in Alzheimer’s patients, in children with autism.  One of the commonalities that have been identified in kids with autism is shortened REM cycles during sleep.  It has been proven that in our little ones, lots of brain development occurs during deep sleep.  The hypothesis is that Aricept will help increase the length of the REM cycles (IE the amount of this deep sleep), helping promote brain development, and hopefully leading to increased language/communication. 

http://www.nimh.nih.gov/labs-at-nimh/join-a-study/trials/childrens-studies/the-dreme-study-a-trial-of-donepezil-for-rem-sleep-enhancement-and-improvement-of-asd-core-symptoms.shtml

I was all for this study when we began, and I stand behind my decision to participate.  That being said, what sounds “reasonable” when you are starting can quickly become quite overwhelming.  The study visits were not frequent- approximately every 6 months (except while he was taking the medication, when it was a bit more frequent), however they were extremely intense and had Nate and me leaving feeling like a dish rag that was rung out, crumpled into a ball and hurled down the stairs (not to be dramatic, lol)

Each visit entails about 4 hours of developmental testing- the Mullen Early learning scale, the ADOs, if you are an autism parent you are very familiar with these.  That doesn’t make them any less painful, but you are familiar.  I also sit with the team for a good 2 hours and answer questions (think rating aberrant behaviors, giving a number to measure the progress of his eye contact and answering to his name, etc.).  Then after the kiddo is completely fed up, I am put in a room and told to “play naturally” with him for 15 minutes.  HA!  After that is inpatient registration, admission to the hospital and EEG lead placement.  That is one of the more painful parts, as you have to keep your child still to have MANY electrodes glued to their head and then “blown” dry with puffs of air.  For a child with sensory issues this is NOT an easy task- letting someone hold his head, especially near his ears, hold it still, blow air near his ears, not fun.  The first time we did this with Nate, he was able to stay unrestrained for the full placement.  As we have moved through this process it has become more difficult- could be one of two things- 1- he is wise to our game and isn’t putting up with it, 2- he is more aware of what is going on with his surroundings and more distressed by it.  I tend to think it’s a combination of the two.  In any case, we have used a papoose restraint the last few times.  I made the decision to just put him in it from the get go yesterday- the faster the process goes, the sooner he will be done.  He was actually quite calm.  The research team is incredibly supportive and literally holds your hand through this whole process, and your child’s.  The neurologist has practically stood on her head to get Nate’s iPad at the appropriate angle so he could see it during the lead placement, and she stays the entire time, as do the research assistants- you will see one lounging with Nate below.

After the leads are placed, he has an awake EEG that just measures his regular brain activity.  Then we head downstairs for an hour or two to eat and wait for bedtime.  This is when I am reminded of how blessed we are as a family, as the inpatient pediatric unit at NIH houses children with a multitude of issues, the main commonality is that they are more severe than what we are dealing with.  Yesterday Nate’s nurse was giving another patient a bone marrow transplant (brought back memories of my BMT nursing days!), the patient next to us was 4 and not yet sitting up (and had come from Germany seeking help), and we came face to face with a small child with gray hair and wrinkles (and in a wheelchair).  Sometimes, we all need to see and hear about people dealing with these difficult and life threatening issues to see the blessings in the fact that although yes, Nate is running laps and yelling all day long and can’t tell me exactly what he wants, he CAN run, and he CAN yell, and he knows what he wants.  That is priceless, and something I try not to let myself forget.  But life gets in the way and we all get caught up in our own issues.  Even though I am a nurse and speak with patients with serious medical issues daily, face to face contact really is different.  Nate’s survival is not in question.   This is so crucial to remember.

Anyway, it’s good to get this perspective BEFORE the sleep study begins lol.  Nate always goes to sleep like a champ, and stays asleep for a good 4-5 hours (last night was almost 6!).  But when his normal half waking period in the middle of the night happens, the trouble begins.  He will turn and kick, which he does at home, only now he has electrodes and leads on both legs, and electrodes on his chin (which they place after he falls asleep).  No matter how many times he starts to fall back asleep, and believe you me, we rock, we sing, I massage his legs, I rub his back, and I beg…..he just can’t get back to sleep.  He was up at about 2am, fully awake at 3am.  At 4 am, Rajiv, our wonderful tech popped in and asked me what I thought.  I told him I knew the jig was up- he laughed and said he always knew that when Nate’s legs start kicking, it’s all over.  So then we went through the process of removing all the electrodes (at 4am) during which time it became painfully clear that Nate’s frequent approximations of *uck are not at all coincidental, sigh.  As Rajiv put it, I WAS hoping for language, and I know I said at one point I didn’t care anymore if it was all curse words, at least he would be communicating.  Guess he took that literally- freaking autism, lol.

Saying goodbye was surprisingly hard this morning.  The doctors, techs, psychologists, research assistants, etc. (even our nurse on the inpatient unit) have been following Nate for 18 months.  Nate has done a lot of growing during that time.  I don’t think his assessments are going to show his progress, after all, the fact that he now requests bubbles with “more bubbles, again, now, go” , pointing, and physically pushing the researcher back to the bubbles, as opposed to requesting bubbles with just “more” in the beginning still “tests” as requesting.  I frankly don’t care.  Because I see it.  And I know that the people doing the assessment see it- and that’s all that matters to me.  The subtleties of his improvements may not show up on paper, but they have made a tremendous impact on his and our quality of life.  We will take it.

I would highly recommend that if you or a loved one has a medical condition and you are feeling at a loss, you contact NIH.  We have been to many doctors, facilities, and research groups at this point (Kennedy Krieger, Hopkins, Children’s National Medical Center) and by far, NIH has been the easiest to work with.  They are appreciative of your time, they are respectful of your family, and seem genuinely concerned for their subjects’ well-being. That just can’t be said for everyone out there.  

When we said goodbye to the neurologist this morning, she told us that if Nate ever has any neurological testing ordered by a physician, we should contact them first before going to another facility.  If they can fit him in, they will do any EEG’s or sleep studies he needs there.  Because then they will have even more longitudinal data, and Nate will be in a familiar environment.  Rajiv also said he would see us in 10 years when they had finally put more of the “pieces” together and could recognize any of the, as of yet, unidentified abnormalities on his eeg (there is abnormal brain activity, just not seizure activity).  I have no doubt that if anything that could help Nate comes up, they will get in touch.  That makes every single minute of holding my breath and begging my son to go back to sleep 100% worth it. 

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.

Fighting the Good Fight for Our Kiddos- The Battle for Habilitative Services Continues

If you have been reading my blog for a while, you will remember how excited I was last fall when I found out that my sons’ OT and speech could be covered by the habilitative services benefit our insurance plan offers, something that was enacted last May. 

http://www.jackandnatesmom.blogspot.com/2013/10/habilitative-services-in-maryland-for.html

Since that time I have been on the phone with CIGNA approximately 8 times, as they have continued to deny my sons’ claims, starting in October when we first billed under autism and habilitative services, all the way through two weeks ago.  Just so that you know I am not crazy (in this regard, ha), here is the documentation, first the “update bulletin” put out last year, and then the exact wording from the open enrollment booklet for this year:

This document printed in May, 2013 takes the place of any documents previously issued to you which described your benefits

BENEFIT HIGHLIGHTS	IN-NETWORK
Habilitative Services for Children Under Age 19 (Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy) Calendar Year Maximum: Unlimited	100% after the $15 PCP or $15 Specialist per office visit copay

Cigna: Open Access Plus In-Network Coverage Period: 01/01/2014 –

12/31/2014

Summary of Benefits and Coverage: What this Plan Covers & What it Costs Coverage for: Individual Plan Type Open Accessst Ifr

Limitations & Exceptions

Home health care No charge, after deductible Limit 16 hours

Rehabilitation services $15 co-pay/

Coverage for Rehabilitation, including Cardiac

Rehabilitation, service is limited to 60 days

annual max

Habilitation services $15 co-pay/

Covered for children under age 19 (Including

physical, speech and occupational therapy,

autism, autism spectrum disorder and cerebral

palsy)

Skilled nursing care No charge, after deductible Coverage is limited to 100 days annual max

So of course I called them, right?  First I was told that habilitative services were not covered AT ALL.  I faxed them the documentation, and they said, how about that.  Then when the claims were still denied, they said they did not have an appropriate “code” to bill under.  When the open enrollment bulletin came out, showing everyone that this benefit is offered I suggested nicely that they get on the stick since soon I would not be the only one who seemed to be aware of the benefit.  Did they?  Nope.  Then they said that this service was not covered for autism.  Ummm, see above.

But I thought surely, definitely now that we are in 2014, after this was in the open enrollment bulletin, it would no longer be an issue.  Logical reasoning would bring you to think that this would become a no-brainer when it has been printed for an entire segment of local government to see and enroll for.  But, alas, I forgot that this is not meant to be logical.  So the denials have continued.  We are lucky to be with an OT practice that is kind of in the fight with us, and understands that I am doing this for the greater good.  Because right now, we are at the beginning of a calendar year, and if I wanted to make my life easier, at least temporarily, we could go back to billing as rehabilitative services for the next 60 visits.  But I refuse to do this.  I want the company to do it right.  And even more importantly, I want these services, which are so needed and deserved, to be provided for our kiddos with autism.  I want validation that these services are not “rehabilitating” anything- they are working on life skills, they are habilitative.  So being the glutton for punishment that I am, I called Cigna again today. 

And I think it happened.  I think I got the “magical” person- you know the one- the representative who is there to really do their job and who actually cares that you get what you need?  She pasted notes all over the boys’ records (in the computer) with details of the habilitative benefit and confirmation that it exists and resent the claims for payment.  Even more- she gave me a confirmation number.  So I can call back and say “yes huh, she did too say it would be fixed and I have numerical proof!!!”  Am I confident that this is it?  That there will be no other hurdles in this regard?  Not at all.  But I do feel like we took a big step in the right direction.  We, as parents to these amazing kiddos, have to fight to make sure that these benefits continue.  We can’t make that happen unless we use them.  And if we have to fight to use them right now, well then, so be it. 

Nate's Ups and Downs

Nate has been so all over the place the last few weeks.  One day he is repeating words and very engaged, and the next you can’t get his attention no matter what you do- his fingers are far too fascinating.  One minute he is falling asleep on me downstairs at 6pm and before I know it he has climbed into our bed at 1am and stood staring out the window over our bed shouting for hours.  The only way to calm him is to squeeze his legs and feet for like, an hour.  This is all complicated by Jack waking up and insisting he needs me- so I run to the next room to sit with him, and Nate starts stimming again and wakes back up because I have stopped squeezing, and our puppy Darby, who is distressed if I leave the room starts yipping like a maniac.  Night time has never been our strong suit over here, and the past few nights have been nothing short of brutal. 

Seriously though, I went to pick him up today from Cisco, and he looks at me and says “go bye bye”, then says open at the door, up at the car door, etc.  It’s like last night never happened.  He is hardly humming or grinding his teeth at all tonight.  We started him back on antifungals and antibiotics last week after the  regression we saw when we stopped them several weeks ago.  He seems to be showing some “die off “ symptoms….

What is die off?

Die-off is short hand for a Herxheimer reaction (Jarisch-Herxheimer reaction).  This term was coined to describe what Karl Herxheimer saw when he administrated drugs to patients.  The reaction is thought to happen when toxins from dying pathogens (viruses, bacteria, parasites, candida, etc.) overwhelm the body’s abilities to clear them out.

This creates a toxic state in the body which produces symptoms like:

• fever
• muscle aches
• chills
• headaches
• skin rashes
• excess mucus production
• brain fog
• Increased GI problems (diarrhea, constipation, etc.)

These symptoms are often reported by many to feel very flu-like or cold-like.  Your whole body is generally sluggish and it usually feels as if your body is working harder, almost fighting something.

The changes that might cause die-off are usually:

• Switching from processed food to a real food diet (death of pathogens by starving)
• Starting or increasing probiotics dosage (death of pathogens by good soldiers)
• Starting or increasing dosage of antiparasitic, anti-yeast or antibiotic (death of pathogens by bombing)

In each of these scenarios, the change in treatment will cause substantial changes in gut flora and knock out a big portion of the bad guys.  When that happens, they release toxins that need to be excreted by the body.

http://scdlifestyle.com/2012/06/5-die-off-myths-everyone-needs-to-know-about/

The first time we did an antifungal treatment with Nate was HELL.  This is not an exaggeration.  It was November 2011.  His pediatrician put him on nystatin and warned us that his symptoms might worsen “a bit” if he truly had a yeast problem.  Fast forward 24 hours, he was banging his head on the walls repeatedly, crying continuously, would eat nothing and having nasty, grainy diarrhea.  Sorry, but if you’re going to hang on my blog, you are going to hear about poop.  It’s a huge part of my mommy life.  When these symptoms appeared (on Thanksgiving) my gut instinct was to stop giving him the nystatin.  He was so uncomfortable!  This of course is not the answer- this is one of those it gets worse and then better scenarios.  We had to wait through the symptoms (and give activated charcoal to counter them) and then we saw our first sliver of eye contact since his regression.  The issue has always been that we see improvement on the anti-yeast medications, but the minute we stop, he starts right back down the same path…

We went to see his pediatrician last Thursday to talk about this.  She is not as experienced as Dr. Brenner with these issues, however she makes herself very accessible and is learning with us.  I wanted to discuss Dr. Usman’s protocols and some others that we are reading about right now.  I am very torn trying to decide what direction to take and wanted some advice.  While I still have not decided 100% on what we are going to do, I did receive a tremendous amount of support, which I really needed.  I need reassurance that the symptoms that I keep seeing disappear and reappear are real.  Sometimes, I feel like because I want to see progress so badly, I am not able to be objective.  I rely heavily on his teachers, therapists and doctors to confirm for me that there are changes (both bad and good).  Most often, I am seeing things accurately- it just helps to be sure.  The decision we came to was to buy a little bit of time before intervening with a new protocol or new doctor.  I need to be confident in my next move- most importantly because my children are so very precious to me, but also because any move I make at this point will end up being very expensive for our family.   So we placed Nate back on the antibiotics and antifungal he was on in December when he had his huge burst of speech- he started last Friday. 

And stopped sleeping and started stimming even more on Sunday.  His teacher emailed me yesterday to say he didn’t seem to be feeling well- I am sure she wasn’t expecting me to feel vindicated when I heard this, but I did.  Die off.  Pure and simple.  He will be a mess for a week or two- we’ve been there and done that, but hopefully it will help him engage and feel better overall in the long run.  Obviously we have no plans to keep him on antibiotics and antifungals indefinitely, although you would be surprised how many kids with autism thrive in this situation.  As a friend of mine pointed out the other day (I hadn’t thought about it in a while), many kids with autism experience a decrease in symptoms with fever. 

Dec. 3, 2007 -- Children with autism appear to improve when they have a fever, according to intriguing new research that could lead to a better understanding of the disorder.

Fever was associated with less hyperactivity, improved communication, and less irritability in the study involving children with autism and related disorders.

Anecdotal reports of improvements in autism symptoms related to fever have circulated for years, but the research represents the first scientific investigation into the observed association.

While kids with autism might be expected to be calmer and less hyperactive when they have fevers, the improvement in communication and socialization seen in the study suggests that fever directly affects brain function, pediatric neurologist Andrew Zimmerman, MD, of Baltimore's Kennedy Krieger Institute, tells WebMD.

"The improvement in symptoms may mean the underlying wiring of the brain (of an autistic child) develops more normally than we have thought," he says, adding that the problem may lie with the connections within the brain responsible for sending information.

Continue reading below...

"Somehow fever appears to be changing the ability to make these connections," he says.

4 out of 5 Kids With Fever Improved

So in my mind, this is all connected (of course maybe I'm just nuts).  Fever response is there to kill off bacteria, no?  As do antibiotics?  So why are scientist focusing on how fever response affects the brain function?  Why aren’t they looking at the idea that the fever may actually be temporarily improving a chronic infection?  An infection that the body is not recognizing or trying to fight on its own?  We already know that there is a correlation between strep and autism. 

http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/

http://intramural.nimh.nih.gov/pdn/web.htm

Does it have to be strep specific?  And how does this relate to other autoimmune disorders.  Ok, sorry, won’t take it that far right now. 

So since we can’t keep him on antibiotics and fluconazole forever (and they only improve the situation, not fix it), what are we to do with this information?  Well that’s where Dr. Usman comes in.  So I am going to continue to research this direction, with several different options out there- even the pediatrician is willing to try a few other options.  In the meantime, Nate’s current symptoms are reassuring me that we are on the right track here. 

Asking For Your Support In Our Next Step

I never in a million years thought I would be doing this, but here I am.  You will notice (or please notice) a new feature on the blog in the upper right hand corner.  It is a PayPal button that says “donate now” with the title “Nate’s medical fund”.  I have been asked to do this multiple times by friends and family.  I have always said no, we will be fine.  I have turned down all offers, except for a swing (thanks MeghanJ) and then an anonymous donation made in Nate’s name to Cisco Center last year- which happened randomly and with no requests- just some amazing person who wanted to help.  Well, we have reached that point.  If you read my post last night, you know that I have been feeling lost.  Well today I spoke with Nate’s pediatrician, several experienced autism parents, my mommy, and of course John.  Here is the conclusion I came to:

We have exhausted the options for Nate that are covered by insurance.  I have taken him to the only “DAN” doctor in our area that takes insurance- Dr. Brenner- he can only take us so far.  We have been to Kennedy Krieger and done the SEED study, we have been to NIH and continue on the Aricept study (with some small improvements).  I have given Nate injections; we have tried very strict special diets.  We have tried, I would say, close to 30 supplements.  If anyone wants to try something, give me a heads up, I have a cabinet full of residuals (like all autism parents).  We have done OT, early intervention, ABA, massage, brushing, transdermal creams….with some improvement.  So here are my options- accept that Nathan is getting help and hope that in time he improves, or push further.

As I was watching him in his private speech evaluation today I couldn’t help but think that we are not done here- not by a long shot.  The speech pathologist tried so hard to engage him, and his stimming was just off the charts- teeth grinding, humming, dangling paper, running laps, flapping….the whole enchilada.  The speech pathologist also happens to be a holistic nutritionist (convenient no?). She asked me about yeast.  Well yes, I do believe he has yeast, thanks for asking- he gets better while on antifungals and regresses almost immediately when we stop them. Same with antibiotics.  Each time we start a new supplement, there seems to be some minor improvement, and then he reverts back, and in my eyes, sometimes seems even more affected.  I have done a ton of reading and I have been to conferences, listened to many practitioners present their theories. 

The one that has resonated with me the most was presented by a physician in Illinois, Dr. Anju Usman.  She is a pediatrician who became interested in this field when all of her children had autoimmune issues.  She became entrenched in figuring out why these conditions have become so prevalent in recent years, in what is causing all of this.  Here is her practice’s website:

http://www.truehealthmedical.com/3452/3494.html

Here is some information on her research and treatment plans:

http://www.pharmiweb.com/pressreleases/pressrel.asp?ROW_ID=77533

http://www.gestaltreality.com/2013/09/16/how-to-eliminate-candida-biofilms/

http://www.autismpedia.org/wiki/index.php?title=Protocols/Usman

I will not even attempt to explain all of this.  Here is what makes me feel strongly that this is the correct direction for Nate.  Dr. Usman believes that much of our kids’ autistic behavior is caused by chronic infections, mainly in the gut, which produce substances that impact cognition.  On top of this, kids like Nate, who have the MTHFR mutation are more susceptible to these to begin with because they have impaired ability to fight these infections off.  Because of this, they end up on antibiotics when little- a lot (check for Nate).  The antibiotics also kill off the good bacteria that keep yeast and other pathogens at bay.  This allows for overgrowth of these bad bugs.  On top of that, the bugs feed on many of the things our kids are deficient of (vitamin B12 for instance).  So lab results show deficits.  What do all of us responsible parents do?  We SUPPLEMENT.  We supplement the bugs, help them grow.  This would explain why initial improvement is seen with a new treatment and then it stops being effective.  These bad bugs form what’s called a “biofilm”, which is a protective layer that keeps antibiotics and other agents from penetrating and killing them off.  So antibiotics and antifungals will kill the bugs that are circulating- but they just come right back, because they are protected.

The goal is to break up the film, treat the bugs, and rid the body of toxins.  For those of you who don’t know, I studied biochemistry before I went to nursing school.  This just makes sense to me.  It makes sense.  Nothing has made sense in a long time.

So maybe you think I am crazy.  I’m ok with that.  This is the one avenue that I have not explored that I have a reasonable amount of confidence in.  Our pediatrician is extremely supportive of us exploring this.  She is brilliant, and that helps.  For those of you who think I am torturing my child for naught, I will tell you this.  Nathan is lost.  I know my child.  I knew him before autism.  I held my neurotypical child in my arms for 18 months.  I received assurances from all directions that unlike Jack, he had great eye contact, was babbling, was then speaking, and was playing with toys appropriately.  He was so happy, he slept.  All beautifully boringly normal.  And that changed.  I saw it change.  Today I had a jolt of memory while we were in the speech evaluation.  The speech pathologist was holding a ball out to Nate and asking him to throw it (he didn’t do it, he mouthed it).  I suddenly flashed to Nate at 16 months standing in the foyer with his daddy playing catch and SAYING “I throw ball”.  And I will never get the image of my beautiful responsive son out of my mind.  And I will never stop fighting to get that back.  I cannot live with myself unless I know I have done everything I can to help him.  I have to move forward with this- now- I have been dragging my feet due to my fears, and our finances.  No more- this needs to happen.

http://youtu.be/tF-8yw3O_yE

It will likely take us 6 months to get an appointment with Dr. Usman- because there are many parents like me going through this exact same process right now.  Of course, like all of these practitioners, Dr. Usman does not take insurance.  Our initial evaluation, with travel, and lab tests (also likely not covered) will be a minimum of $2000 to 3000.  Minimum.  I am not going to let this stop me- and if it helps Nate then we will need to do it for Jack too.  So to the family and friends who have been asking- now is your chance to click the button and help us help Nate.  I am waving my white flag, and we thank you from the bottom of our hearts.

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 1/6^th 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!

Happy Feet and Autism- There's a Story There

I would like to talk about the movie “Happy Feet”.  Consider it a preview of future events as Nathan is going as the penguin “Mumble” for Halloween and he will also be having a “Happy Feet” birthday party…after reading this post, you won’t have to ask why, that’s for sure.

I love this movie, and I would ask that each and every one of you who reads my blog and hasn’t seen it pulease go out and rent/buy/stream it whatever you have to do but please watch it.  It’s not just me who loves this movie; Nathan has always had a real affinity for it.  There is a lot of music, a lot of movement, yes, but that could be said about pretty much any kid’s movie.  This one, he loves it. 

The story is going to sound pretty familiar.  A little penguin hatches to two very proud parents and from the word Go it is apparent that he is “different” from other penguins.  He tap dances around all the time (stimming?) His mom and dad are worried, but he “looks” normal, and they send him off to school, where the teacher discovers that he cannot sing.  A penguin’s “heart song” is the way he communicates, the way he finds a mate (penguins mate for life).  And Mumble (yes Mumble) can’t communicate the way all of the other penguins do- instead, he communicates by dancing.  The teacher declares him a lost cause (I believe she says that a penguin without a heart song is hardly a penguin at all?  Cranky b-word) and mom and dad take him to a “specialist”, who says much the same. 

 He is not able to graduate with his peers, he is treated as “less than”.  His father is embarrassed and has a very difficult time accepting his differences, his mom thinks he’s perfect the way he is.  He becomes an outcast- but in the end, his differences end up saving the penguins as he finds a way to communicate with humans and save the fish supply that the humans have been consuming.  He becomes a hero. 

It’s a wonderful story, and I don’t even know if it was meant to be “about autism”, but the bottom line is that for any autism parent, the theme really resonates, and the way the story unfolds hits very close to home.  Mumble reminds me so much of my Nate.  It’s not just that he is different from his peers, it’s his view of the world around him, the way he accepts himself and if anything, seems oblivious to the fact that others may not see him as “normal”.  He is happy, he is in his own little world, and he sees nothing wrong with that.  I believe that Nate is capable of accomplishing great things, which is why I never stop pushing forward in this fight.  That being said….he is happy right now, just as he is.  Of that I am sure.

At the end of the movie, Mumble has the rest of the penguins dancing HIS dance, including his parents.  It is incredibly moving to me, and it makes me wonder, are we missing something?  We all know of people with autism who are considered “savants”, who visibly have a talent or skill that none of us can comprehend being able to accomplish.  There have been interviews with people on the spectrum who report that medications have “helped” them with speech, communication, day to day functioning, etc., but that they could no longer play the piano with the same skill they once had.  Any parent that lives with autism on a daily basis must contemplate this from time to time- why are our children the way they are?  Is it truly a “disorder”?  Is there a higher purpose?  And if so, why are we, as a society, so uncomfortable with all of this?  We are so concerned with our children conforming at times that we (including me) fail to remember the wonderful things that they bring to the table.

 Nathan has taught me more about the meaning of love in his 4 years of life than anyone else ever has.  I feel wise through being his mommy, I understand what acceptance is, and I have a broader view of what is important in life.  So many things that felt “tragic” before Nathan now feel more like….eh.  Things that other parents complain about are things that I dream of for my child.  I would kill for Nathan to really piss me off someday by dating someone I can’t stand, or rebelling.  That is my fantasy!  Please sweetie, marry the wrong girl, move in with her first, move to some exotic country and refuse to wear anything but a thong!  I support you 100%!  The thought of Nathan having that kind of independence….it brings tears to my eyes.  Yes, even with the thong in the same paragraph.  So at this point, that is the biggest lesson Nate has taught me- kind of like that book “Don’t Sweat the Small Stuff- And It’s All Small Stuff”.  You have it in writing now son, in case someday you are reading this- whatever your path is in life- go for it- I just pray that you are someday capable of choosing that path for yourself. 

Driving Without a License

OK, I can’t hold it in any longer.  Nate is doing really well the past week or two.  Not too many “new” words, but the ones he uses, he is definitely using much more consistently.  We are much more easily able to discern what he wants, although it’s still a challenge at times.

Here is the funniest and most significant thing that has changed.  Nate has been pulling us out of our chairs to get his cup or food for quite a while.  This weekend has been somewhat challenging for him on multiple fronts.  First of all, we have been on the go quite a bit, which is always unsettling to him.  But more importantly, the places we have gone and the people we have seen are familiar to him because they are the places where I take him and people he sees when I leave.  Friday night we went to Cisco Center for a little get together.  Saturday we went to my parents, where I left him for a sleep over last month, and then we headed to a birthday party which the Director (whoot) of Cisco Center was also attending.  He was not taking any chances- kid was glued to my side at each place.  It was really cute and endearing after the crying jags that occurred when we arrived at each place.  When we were at Cisco Center he was chasing me everywhere.  But yesterday he took a different, really awesome approach. 

He drove me.

Not a joke, it’s like I was his boat and my arm was his rudder.  Especially at my parent’s house.  If I wasn’t where he wanted me to be, he grabbed my hand and steered me in that direction.  He pulled me to the garage stairs and then stood behind me and pushed my legs until I walked up them.  He pulled me to the family room, in front of the couch, and then pushed my knees until I sat down.  At lunch he kept grabbing my hand and putting it on the dish that contained the food that he wanted.  He acted similarly at the party as well.  This is the first time he has done this.  He was making the effort to communicate with me, and for the most part it was not food based (which is always his greatest motivator).  He was letting me know where he wanted me to be, and more importantly he was expressing his needs.  I wasn’t wondering if he was truly content with what we were doing, he was letting me know- very decisively. 

It has even continued some at home today, although of course this is a much more comfortable setting for him.  He and I were eating lunch and John walked into the room.  All I had given Nate was a “crummy sandwich” and he was clearly not pleased about this.  But he was strapped into his booster and unable to lead anyone to what he wanted.  So instead, he started pushing John away from him and saying “go”.  Then, “I want chips, go”.  He told John to go get him chips.

We are seeing progress.  Actual, tangible progress.

My Reluctant Fish

When I applied for grants over the summer, one of the services I applied for was special needs swimming lessons for Jack.  At first glance it may seem as though he would be fine in regular swim lessons, however we have tried that and let's just say it didn't go so well. 

The group nature of the activity was not a good fit, and honestly even though he is upright, running and walking, he actually has some significant gross and fine motor deficits.  Along with insecurity- not knowing where his body is in space.  I wanted him to have at least a good 6 week session or two of this (one on one lessons with a specialized instructor) and then maybe we can move back to regular lessons.  However, these lessons are expensive, so that is why I applied some of our funding to this area. 

So you can imagine my dismay when before the 4^th lesson last week, Jack was telling me he didn’t want to go back.  I was that mom “oh no, you WILL go back”.  I may not be paying out of pocket for the lessons, but believe me, I did the work to get that funding, and it will be utilized.  Last week he got his wish because when he arrived at his lesson there was a code brown and the pool had to be cleaned.  His lesson was cancelled.  Well, he started in again today after school, telling me he didn’t want to go, didn’t want to put his face in, go under, etc.  He has done this for a long time when he is at the regular pool so I was a bit perplexed.  So I asked him why.  His answer?  He can’t talk when he’s under water.  This from the boy who is literally incapable of NOT talking during any given moment of the day.  Clearly this compulsion is stronger than I thought if the idea of refraining from talking for a few minutes gives him this kind of anxiety and dread. 

This is where the brainteaser parenting comes into play.  Everything needs to be turned into an “opportunity” surrounding one of his areas of interest.  Not to brag, but I’m a pro.  I told him that if he didn’t learn how to go under water and speak “bubble language” that he would never be able to communicate with all of the animals in the ocean.  If you recall, about a year ago he was all about whales, crabs, lobsters, hermit crabs and sharks.  He asked if he would be able to say “real words” while he was under, so I demonstrated a very, umm, odd “hwelllo” in bubble talk.   He seemed satisfied with this answer, but was still reluctant.  His instructor also wanted him to start wearing goggles this week since he will be going under quite a bit more, and he was vehemently opposed to this.  Until I told him they were fighter pilot goggles. Then he wouldn’t take them off- score!

He did an absolutely AWESOME job at his lesson!  He went under, jumped in with and without pads, practiced some basic strokes and floated on his back (ok well only for a second).  I had told his instructor at the beginning of his lesson about the going under water thing and the pilot goggles thing, so she was able to keep that going.  At the end of the lesson she told me that Jack was making some funny sounds when he went under and was blowing bubbles.  I repeated my ridiculous hello to her and said “like that??”  She said, yes, exactly like that!  The boy is determined to speak no matter where he is. 

 

And no the irony of that situation is not lost on me.  Because while he was doing this, I was in the viewing area with Nate toiling to get him to say water- and he DID say it during bath time tonight.  I swear to God there are times that I think he sits there and bides his time, and then decides, oh all right, I’ll throw the old girl a bone and comes out with it “water”.  But only once- mommy has to work for those words.  Maybe this is a load of crap- but if you saw the smug expression on my sweet boy’s face when this is happening, you might just agree with me.

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