A Happy Day

I have talked in the past about how very small or common accomplishments can feel extraordinary when your child has autism.  Yesterday was chock full of examples of this.  It was a great day, and any parent would feel that way.  I am very proud of my little boys.

First and foremost, Jack went on a field trip with his camp to a swim center and did a great job- also, he told me all about it, we had a full conversation- as in back and forth.  Then, when I brought him home at 3pm, I put on a movie for him and went upstairs to work- he did not interrupt me for over an hour.  That's the first time he has ever done that.  I still can't believe it.

John had to work late last night, so the boys and I were on our own.  As we often do, we went to Chick Fil-A for dinner last night.  My children were angels- well other than Nathan screaming when we first went in- transitions are always rough.  I was allowing Jack to have one of his favorite dietary "cheats", which is a milkshake- usually he gets so excited about it that he starts shouting and often says pretty inappropriate things to the person bringing out the shake- give that to me or I'll shoot, give it now, etc.  As much as I want to get angry over this misconduct, I know where it's coming from, he's literally in a panic.  I have taught my son manners and he knows better.  His impulse control is not the same as that of most 6 year olds- but last night he proved that it is getting better.  He said thank you :-)  Jack was watching me "torture" Nate by making him ask for more for each fry.  We were working on saying fry, which he said in the past but lost.  Jack was kind of laughing about it, and I suggested to him that it might help Nate to understand if I held his fries too and he asked for "more fry" when he wanted one.  He handed me the fries and proceeded to do this for the rest of the meal.  What a selfless thing to do!  Did we get "fry" out of Nathan?  Nope- but he was watching Jack when he said it, and he did make attempts, just didn't quite get there.  Was so proud of Jack for being a great big brother.

After dinner we headed over to Target to pick up a few things.  Target is often a nightmare with both boys in tow- Nate cries if you stop moving and Jack wants to look at everything- not the best combination!  After we got what we needed I dared to take them to the toy section.  Jack loves this of course and to my surprise last night Nate was looking at everything too.  And he got really excited when we stopped at the Toy Story section.  He reached for a woody doll and held it for several minutes, then dumped it.  But still, I have never seen him do that before.  And Mr. Jack encountered a huge display for the new movie "Planes" (soooo excited to take him to see it).  His eyes just about popped out of his head.  In the past this would have amounted to meltdown city.  Not now- he looked at each individual plane- they all have cutesy names, but of course Jack was like "um, mom, that's a corsair" (duh).  He chose one plane, and although he asked multiple times for more, he was happy with the one and left without a fuss.  We even encountered a non child friendly check out person.  I requested multiple times that after she scanned the plane she hand it back to Jack- she totally ignored me.  This would usually be another trigger, and he did start to get upset, but managed to get the words out- mom please get my plane.  So I did, and he was fine.

Here is the icing on the cake that was my day.  We all hung out upstairs together last night after we got home.  Well more specifically, Nate and I hung out on the potty and Jack played in his room (yet another thing that would never have happened 6 months ago- independent play).  Nate went on the potty- that is our second success this week.  And he really seemed to understand what was happening, helped me dump it into the toilet and flush.  He really seemed proud of himself.  This morning when I went to get him up, he was DRY.  I put him on the potty and he went again!  Now, all the practitioners have cautioned me that he is likely not ready for potty training, that if he has successes it is likely more of a coincidence type thing than anything else.  My response is this- they are probably right- but he is learning the concept of what the potty is- and what do you call a string of coincidences?  I would call it habit formation myself.  So we are going to keep this up, I have this sneaking suspicion that Nate may just surprise us.    

A Woman's World

Women are consummate multitaskers, I don't care if you're a working mom, a working woman, a stay at home mom, a stay at home working mom, or a green alien mom- you do it too.  There are days when my husband comes home from work and announces to me that he is exhausted- I in kind want to wring his neck. 

I am sure that he is exhausted, I am sure that to anyone on the outside looking in he probably did have a busy day- his department is hopping, they are down staff members and people are on vacation- and I get that.  But you see, I am super mom- able to take calls, mop, cook dinner, do pick ups from camp/school, run and fold the laundry, and appease children, all while standing on one hand.  By the end of the day, I don't want to hear it. 

What do I want to hear?  It goes something like this....hi honey, how is my amazing wife?  Oh my God, the house looks amazing, and how many calls did you manage to log at work today?  40- you ARE amazing?  And what's that I smell?  A healthy dinner?  Sure sweetie I love roasted vegetables.  Do I hear the dryer running?  Jack is on the ipad?  You ran today?  And picked up both boys from camp?  Boy, I have nothing to complain about- YOU, you climbed Everest today again without breaking a sweat.

Never.  Gonna. Happen. Back to the real world

So instead, I say it to myself.  I am amazing.  Today?  Today I did a load of laundry, made breakfast, doled out all the supplements, got the kids dressed, got Nate on the bus, made all of my work calls, put in authorizations for transplants, vacuumed and mopped the downstairs, ran and unloaded the dishwasher, called the developmental pediatrician to bug him about Nate's mitochondrial cocktail- 3, yes, 3 times.  When they finally said they would get him, I was on hold for 12 minutes, in which time I missed 3 work calls.  I found a local compounding pharmacy for the doctor, gave him their phone and fax, then followed up with the office staff an hour later to make sure he remembered to fax them the information.  That's one downside of using one of the few biomed doctors who takes insurance- they are really really busy and forget things- a lot.  When his receptionist commented on the fact that I had remained so pleasant when it took so many tries to get him on the phone I explained that I am grateful that he is unable to leave the consult he's currently working on- two weeks ago it was my boys.  I told her the longer he stays with them, the better.  The man is being reimbursed at managed care rates and spending two hours assessing my kids- who am I to complain?

Anyhoo, then I picked Jack up from camp, made more calls, marinated the stir fry, and now I'm about to go get Nate.  When I get him home, I will check my voice mail, then prepare the stir fry, while one little person complains that he doesn't want to eat it and the other one stands literally on my feet saying "more, chip, more, chip, more, chip".  Then my husband will walk in and tell me he's tired.  And I will smile and say, "dinner's ready". 

Why?  because I am a woman

The World Didn't End

I was snuggling with Mr. Natey this morning before he got on the bus.  I have been particularly tough on him recently- he is showing a little more awareness and I am trying to take advantage of every moment of it.  I had him in his little learning chair (baby jail) for almost an hour last night practicing sorting, reading him books, stacking, yada yada.  I wouldn't let him out until he said done.  Things like that.  Trying to get him to use his words is torture for all of us.  It doesn't help that all of his favorite things seem to start with C, which I think I have mentioned before- chip, cup, cookie.  He did say cook for cookie this weekend so that was good.  It just stinks that they all kind of sound the same- we're never completely sure he's saying something new, or understanding.  I am back to working on body parts with him again- something that he was still doing at this time two years ago- he pointed to his nose, eyes and head at his 18 month checkup.  Anyway, as I was looking at him all I could think was, I can't believe we're here. 

Nathan is 3 and a half years old.  This is the age that Jack was when he was diagnosed with Aspergers.  When after years of feeling alone, feeling like people thought I was "overreacting" to some very concerning behaviors, I mentioned my concerns to his 3 year old preschool teacher.  She said "thank God, I have been waiting for you to bring it up!!"  That was when I called child find- where they wouldn't diagnose him, but told me that he had such and such deficits in these areas, then said, these types of deficits often point to autism.  I want to emphasize this to any parents going through, or about to go through the evaluation process with their child.  Do NOT go alone.  I did, and it was a huge mistake.  Take someone with you, someone to entertain your child while you have your nervous breakdown.  A visit to a developmental pediatrician (a "traditional" one) took about 4-5 months to procure and when we did so, he was officially diagnosed.  I once again went alone to this appointment- if I'm being honest, I was facing these issues on my own at the time- it was really tough for daddy to accept.  I still thank God everyday that he got there. 

At the time, I felt as though my whole world was crumbling.  I thought, ok, this is our "thing".  The bad "thing" that every family has to face and work through.  Little did I know that this was actually our preparation for a much bigger "thing", Nate's autism.  First God gave us our child with motor and sensory issues, obsessions, extreme emotions, ADHD and copious speech.  It may have been tough, but at least he could communicate, and interact.  Then he gave us our Nathan, who seemed blessedly neurotypical, and then snatched that away (or at least that is how it has always felt).  We watched him speak, then stop.  We watched him play with toys, then stop.  We watched him respond to his name, then stop.  We watched him point to things, then stop.  It was excruciating, and it happened about 7-8 months after Jack was first diagnosed.  Talk about your double whammy.

I just can't believe, when I look at Nate today, that he is the age that Jack was when this all started.  He is wearing the same clothes, but that is where the similarities end.  If I had known what we would face with Nathan, maybe Jack's issues would have been a bit easier to swallow?  I say that, but I honestly don't think so.  No parent wants to see their child struggle in any way.  I guess the bottom line is that we are making it.  It felt like the world was ending when all of this happened, but it didn't.  We just got stronger.  Below are some pictures of first Jack, then Nate at 3 and a half.

A Simple Wish

http://www.nbcnews.com/video/nightly-news/52582150#52582150

My mom was here today and told me about this story which was on the  NBC Nightly News the other night.  I encourage you all to watch.  Of course this woman's story hits very close to home for me, being the mom of two boys with autism myself.  And the pure joy she feels at her son's accomplishment is something that every autism parent strives for on a daily basis.  Kudos to NBC News for putting this on their broadcast.  A dose of reality for everyone- what we wish for more than anything else in the world is for our child to communicate with us.  The day Nate said "I want cup" will go down as one of the best days of my life- now if only he would start saying it again....

I Choose Grace

Over the past several years I have started to develop a thicker skin.  I used to cry, all the time.  If a family member was mad at me, even if I had done nothing wrong I would sometimes cry for days.  When I felt judged, I would cry.  I have always been a very sensitive person, I get very upset when I feel rejected or when I fear I have offended someone.  And while this type of empathy and awareness can be a good thing to a certain extent, and is frankly something lacking in many, I think that it can also be a burden, and it can be completely exhausting.  Because when you worry so much about what others think, you allow them to literally drain your energy.  For me it was like opening a valve.  In the past, when there was conflict, I would be incapacitated by my emotions.  What did I do wrong?  Why don't they like me?  And the biggest and most self-damaging one- how can I fix it?

The crux of the situation is that everyone has their own issues and their own past.  Whether they were raised to be empathetic or judgemental, or to value only physical appearances; whether they were raised to believe that family members/friends are forever, even in the face of adversity, or that these ties can be severed as effortlessly as brushing a piece of lint off of one's jacket.  Whether they surround those in need, in crisis, with love and support or avoid them.  This cannot be fixed, and attempting to do so will only result in more negative feelings. 

This is something all too familiar to so many special needs families out there.  I hear about it from a friend or acquaintance almost weekly.  A rejection or hurt at the hands of a friend or family member.  A lack of acknowledgement or empathy.  Refusal to see that many global family problems- marital tension, unwillingness to attend social events, inability to contribute in the same ways as one has in the past- are truly a part of a much larger issue- autism. 

I used to feel the need to explain to those who did not have this insight.  To try and "help" them to understand what we were going through or where we were coming from.  The act of doing this was literally worse than beating my head against a wall.  Some people are unable to, or do not want to see.  Some people don't understand the issues that autism brings.  Such as the need to keep things low key, family events tame, parties small, and vacations quiet.  Or the exhaustion that parents of children with autism continuously feel- both emotionally and physically.  It is not a lack of "zest for life", or laziness, or even depression.  This is a reality for many families. 

All of this is very frustrating from my side of the fence.  I want to shake people and say, why can't you see?  Why can't you just be there- unconditionally?  I suppose I could spend my time worrying about this, and end up hurting myself.  But instead- I choose grace.  I choose to smile, I choose to allow my problems and my family's problems to be seen.  I do my best to allow the judgement to roll off, knowing that I am making the best choices I can for my family.  I choose to hold my head up high and love those that cannot love me and my family for who and what we have become and need to be.  I can pray to God that my grace will rub off on those who need it.  But now I can also accept that this will not always happen- that there will be many many times when the gesture will remain one sided.  I can accept that my grace allows me to enjoy my life, to feel fulfilled.  And that I am setting a good example for my children.

Turning a Negative Into a Positive

I posted last night about how annoyed I was with Children's.  Telling Jack today that he did in fact have to have a "test" (blood draw) was not pleasant at all.  I decided that I needed to provide some incentive.

I made plans to take Jack on a mommy-son "date night" after the clinic visit and told him that if he did a good job we would have a special dinner and get his school shoes.  He didn't even cry when he had his blood drawn.  Although he did talk Dr Wu's ear off about parakeets- his areas of interest really become extra intense when he is nervous. 

After the visit we went to the mall to pick out his shoes.  I was amazed to discover that his feet grew 2.5 sizes this past year!  He did a pretty good job, so after we finished I told him we could go to California Pizza Kitchen.  They have always had gluten free crust, and I am ok with him having the occasional dairy these days.  We get seated, Jack is all excited and then they tell me they discontinued their gluten free crust??  Well that's just crappy!  So I had to choose- meltdown or let him cheat.  I am embarrassed to admit that I let him cheat.  I just felt too bad going back on my word after how many blood draws he has endured these past few weeks.  So we went for it.  Bad mommy.  Oh well.

We also went and got his lunch box for first grade.  He wanted Darth Vader.  This just tickles me.  Being at camp this summer around the big kids has caused him to really pay more attention to the more "trendy" things among his peers.  He has never wanted anything that the other kids have before.  While I wouldn't want to encourage it all the time, it's nice to see him wanting to be like his buddies.  He was so excited about it and showed it to EVERYONE. 

There were three highlights to our evening.  The first would definitely be sitting down to a dinner out with my son and being able to hold somewhat of a conversation with him.  This is improving lately- even Dr. Wu noticed today that Jack was asking HIM questions about things and actually paying attention to his answers.  These skills are definitely new- it's not just my imagination.  The second would be that Jack is finally a bit more trustworthy in stores.  What I mean by this is that I don't feel like I have to follow him closely everywhere in a store.  I can leave him to look at something for a second and not fear that he will run off, or cause a scene.  I don't go far, I can still see him, but I'm not on him like white on rice anymore.  What a huge feeling this is- I never thought it would happen.  The third is not so much a highlight as it is hilarious.  Jack is TOTALLY freaked out by mannequins right now.  It's too funny.  The headless ones really bug him, but he still tries to talk to them.  But a couple of times, as we were walking through the mall he would spot a mannequin in the window of a store and tell it to stop looking at him.  He is noticing things around him more and more.  And entertaining his mama in the process.  He is really growing up.

Are You Freaking Kidding Me???

If you recall, a few weeks ago I was ready to pull out of the memantine study at Children's National Medical Center after they messed up Jack's blood draw, stuck him twice and wanted him to come back in for a third go at it.
http://jackandnatesmom.blogspot.com/2013/07/livid.html

OK, so that blood draw went pretty well, I put EMLA on right as we left the house, no biggie.  They apologized and things were ok.  Tomorrow is our next visit, just routine.  We had to reschedule, no big deal.  I just got a voice mail.  They forgot to add one of the tubes to the blood draw last time.  Long story short, they "need" to draw his blood again!!!!

Honest to pete.  All of this for 3 tubes of blood?  It would be one thing if he was supposed to get his blood drawn each time he was seen.  At least then I could have prepared him.  Instead, they leave me this message at almost 7pm when the only way I convinced Jack the visit would be fine tomorrow was by telling him that this time he didn't have to get a test.  Now mommy is a liar.  And I am really questioning the competence of this team.  This kind of screw up is one thing the first time, but when it keeps happening over and over again- well I'm starting to wonder.

Grrrrrrr.......

Uncle!!!!!

I am crying uncle.....

OK, first of all, I want to let you know that I recognize and appreciate that my child is not suffering from a life-threatening illness.  I am so grateful that the supplements we are instructed to give him are to improve his life, not save it.  However, the picture above is of all of the supplements Nate needs to be taking right now, at least orally.  The shots and creams are not included.  The omega bottle is 2 tbsp a day, the red bottle, 9 tsp a day, and then the three powders, and 10 pills.  Nate of course cannot swallow pills so all capsules have to be opened up and hidden in drink/food.  Almost all of the pills are parts of the "mitochondrial cocktail" he was prescribed by the developmental pediatrician last week. 

Here is a bit more information on this:

http://www.autismfile.com/science-research/has-your-child-with-autistic-symptoms-been-properly-screened-for-a-subset-of-mitochondrial-disease-known-as-oxphos

This is all well and good.  I am enthusiastic about trying this with Nathan, and possibly Jack in the future.  Both of them had lab values that indicated this could be helpful for them.  But I have come to the conclusion that with the current supplements we have, getting all of this into Nathan is just not possible.  I have hidden things in his drinks (which I have been doing for years), I have tried mixing them with spoonfuls of maple syrup, almond butter, jam, and chocolate syrup. I have tried tucking the powder inside a fish stick, inside a chicken nugget.  I even tried in his fish oil (it's mango flavored).  Not gonna happen.  Now- in the past, (soon after diagnosis) he didn't notice or care about the odd tastes or gritty textures of the supplements.  I would bake calcium, vitamin c, and a multivitamin into his almond bread and he would gobble it right up.  So, his increased awareness is obviously a good thing, however, in terms of giving him supplements, I am screwed. 

I started doing some research on Saturday night because I figured there are lots of people confronted with this issue. 

I found this:

http://www.mitoaction.org/blog/qa-compounding-pharmacists

A compounding pharmacy assists mitochondrial disease patients by providing vitamins and supplements in a compounded capsule or liquid form depending on the needs of the adult or child patient.  There are many benefits to working with a compounding pharmacist.  Primarily, a compounding pharmacy can combine the vitamins/supplements in order to minimize the number of vitamins and supplements required, as well as to make the medication more patient more palatable in liquid or capsule form. They work closely with the patient's physician and take into consideration the patient's diet and diet restrictions as well as the overall medication plan.  A compounded medication is then developed which is unique for each patient and his/her specific treatment plan or prescription . The formulas are based on multiple variables, including the prescription, the patient's symptoms, the patient's diagnosis, weight, allergies, physician recommendations, etc. The goal is to work with the physician, patient and pharmacy in order to develop an ideal mix  (or "compound") of these vitamins and supplements that offers the patient the most ease and the least side effects.

We have been working with a compounding pharmacy for about two years now (www.leesilsby.com), they provide the boy's methylcobalamin shots, and we order most of our supplements from their sister company (www.ourkidsasd.com).  To give you an idea of how useful compounding pharmacies can be- they ensure medications are gluten and casein free, they use very "pure" formulations, and they individualize medications as needed.  For instance, when we all had influenza A last winter, tamiflu in liquid form was out of stock everywhere.  We have a local compounding pharmacy, right below our pediatrician's office, and when I took the script there after trying all of the traditional pharmacies who couldn't help me, they said, yeah we're out of the liquid.  That's why we are opening the capsules up, re suspending them, and adding flavor.  I mean really- this is not that difficult.  How many kids could have benefited from this last winter if only they had known this was available? 

So I went to the Lee Silsby website and typed in mitochondrial.  Under the list of "medications we carry", lo and behold was-

Mitochondrial Formula Suspension

I emailed them immediately and heard back from them this morning.  They are going to consult with our pediatrician and work on a suspension that will be much easier for us to give to Nathan.  Thank goodness for this, keep your fingers crossed that it works out!

Is It Really #Autism?

This post has been brewing for quite awhile, but with all of the hoopla over vaccines, the "causes" of autism and possible other conditions with a similar presentation to autism I feel like it's a good time to share this.

So here's the thing about autism- there is no absolute test for it, right?  The diagnosis is made by assessment of behaviors, deficits, communication problems.  Parents are urged to complete the M-CHAT which is a comprehensive list of questions about their child at specific ages, and if red flags are there, further assessment is completed by a developmental pediatrician.  Having your child assessed by the school system is not adequate.  They can give your child a disability "label", but this should not be confused with a diagnosis. 

Because there is not a blood test that gives you a definitive diagnosis, people at times question if a child "really has autism".  The bottom line is, if they meet the diagnostic criteria, they have autism.  Could "autistic" behaviors be caused by something else? Good question.  Right now, we treat the behaviors, not the cause- or at least the medical community at large does.  And some children respond to alternative treatments, some do not.  Some parents have seen their children regress into autism, and others have seen the issues all along.

Why is this?  Is it possible that maybe not all cases of what is diagnosed as autism are autism at all?  I think that this is a very real possibility.  I also think that the idea that autism could be an autoimmune disease or at least be regulated by a similar mechanism, makes a lot of medical sense.  So many people with autism have other autoimmune problems, either themselves, or within their families. 
http://www.autismspeaks.org/science/science-news/association-family-history-autoimmune-disease-0

I know that we, as a family, have a history of crohn's disease, rheumatoid, autism, and other chronic autoimmune bowel conditions as well.  I cannot tell you how many other families we know fit this pattern.  This is one possible way to understand the huge increase in autism in recent years- what other disorders have increased?  Crohns, rheumatoid, fibromyalgia, diabetes, celiac, lupus.  These are all autoimmune disorders right?  It also goes back to the idea that there is no such thing as a genetic epidemic.  http://www.medicalnewstoday.com/articles/246960.php

"With the rapid increase in autoimmune diseases, it clearly suggests that environmental factors are at play due to the significant increase in these diseases. Genes do not change in such a short period of time."

http://jcn.sagepub.com/content/14/6/388.short

So if autism might be an autoimmune problem, it makes me wonder, are there other autoimmune disorders that cause symptoms of autism.  For instance....celiac
http://www.celiaccentral.org/Celiac-Disease/Related-Diseases/Autism-and-Celiac-Disease/37/    Is this why the gluten/casein free diet is life changing for some kids with autism and not others?  Could there be underlying celiac disease?

Celiac Disease-Autism Link

• Category: Blog, Signs and Symptoms
• Published Dated: February 18, 2010
• Writen by: katymchenry

The latest statistics say that 1 in 91 children have a diagnosis of autism. At the same time, it is now estimated that 1 in 100 individuals has celiac disease. Both of these conditions have paralleled each other in their increasing diagnosis over the years and recently, parents have been making the link, putting their children on gluten/casein free diets. However, what is behind the association between gluten and autism? Is there a link? Several studies say there is.
An association has been observed between children who have gastrointestinal symptoms and a family history of autoimmune disease as well as language regression (Valicenti-McDermott, McVicar, Cohen, Weshil, Shinnar, 2008). The study included 100 children with autism spectrum disorder. According to their parents, those with language regression more frequently suffered from abnormal stool patterns (40% versus 12%) and 24% of the children with language regression had an increased family history of celiac disease or IBD while none of the children without language regression did.
A smaller study of only 21 patients with autism found that 9 of the participants had an increased intestinal permeability compared to the control group (D’Eufemia, Celli, Finocchiaro, Pacifico, Viozzi, Zaccagnini, 1996). The study does not mention celiac disease, but it is important to note that it is a well known cause of increased intestinal permeability.
We are fairly certain that yes, a link between celiac disease and autism is there. But has it been shown that a gluten free diet might help ease the symptoms of autism? A 5-year-old boy diagnosed with severe autism and suffering from gastrointestinal symptoms was placed on a gluten free diet and given nutritional supplements in a clinical study (Genuis, Bouchard, 2010). Not only did his GI symptoms quickly resolve themselves, but his symptoms of autism also progressively subsided.

And now a little more to make your head spin....
http://www.ncbi.nlm.nih.gov/pubmed/16917400

Untreated celiac disease may be associated with hyperhomocysteinemia caused by a combination of vitamin deficiencies and variants in the MTHFR gene. Abnormalities do not consistently improve with gluten-free diet.  The abnormal findings could result from vitamin deficiencies or variant MTHFR status. Possible clinical implications for patients with celiac disease and hyperhomocysteinemia are reviewed.

Huh, so these people with celiac only improved when folic acid was added to the gluten free diet- and this was due to MTHFR variants.

I just don't know what I think about this yet.  What I do know is that based on some of the genetic issues I have read about with regard to autism, this seems to start tying a lot of things together, at least for me. 

If you recall from past posts, MTHFR mutations have also been suspected as a possible cause of autism.  My son's both have them.  This is confirmed.  (http://jackandnatesmom.blogspot.com/2012/10/more-answersmore-questions.html)
This is why I hold fast to the idea that the medical community is as of yet clueless about what is causing autism.  There are leads like these out there....it feels to me like people are either ignoring or discounting them.  Oh, and look at this....nothing definitively said, but it is something to think about.
http://www.ncbi.nlm.nih.gov/pubmed/15196997

I know many will disagree with me on all of this- but this is not even my opinion so much as me reading data that is readily available.  From reputable sources.  And this is just one of many theories.  That being said, I can see the logic.  Can you? The biochemist and nurse in me just can't let this go.

Does He Ever Get Tired?

Of course I have asked myself this question a million times when it comes to Jack.  But lately I have been hearing it all over the place- a few people at Cisco asked me, his grandmother asked me, the camp counselors asked me, a kid at the OT office asked me....

The short answer is NO.  Jack never ever gets tired.  OK, once in awhile, but honestly, the only times he has fallen asleep during the day since he was 18 months old were when he was sick, or when he was on ADHD medication that caused him to wake up hourly every single night.  Does he sleep after anesthesia?  nope.  After a long day at the beach?  Not really.  Christmas night?  Heck no.  I think his kindergarten teacher has seen him sleep more during the day after this year than I ever have- sometimes he would conk out 2 or 3 times a day in school while he was on medication.  Those medications were obviously stopped. 

Jack NEVER slept as a baby- his first daycare provider, who had raised 8 children of her own, lost 5 lbs the first week she cared for him (he was 3 months old at the time).  He would nap, on someone, for 15 minutes at a time.  The bassinet- fail.  Pack and play- fail.  Co sleeper STRAPPED to the bed?  Fail.  I moved out of our master bedroom that first year and slept in a twin bed with Jack.  It was the ONLY way we could get any sleep.  And I went back to work full time when he was 8 weeks old- I had to sleep somehow.  He would be up ALL DAY at family events, or anytime we were out.  People would say things like "wow is he going to sleep when he gets home."  Ha I say.  Saying that out loud was the ultimate curse and he would not sleep at all.  Now I know that these were signs of what was to come- at the time I just felt like a failure as a mother.  I even had a mommy friend who when she had her second child (who was a horrible sleeper vs her first who did great) said to me that she just thought I wasn't doing a good job getting Jack to sleep.  Before she had her second child- then she got it.  If you've had a poor sleeper, you know exactly what I am talking about.  The smug parents who think they are just "doing it right".  I've got news for you- it's not YOU.  It's them.  The first time I put Nate in the bassinet and he just curled up and went to sleep?  I cried with relief.  So THIS was what everyone was talking about!  They DO sleep!  And Nate is still a great sleeper- no intervention needed.

When Jack was about 14 months I decided it was time to lay down the law.  We tried crying it out- he went for nearly 2 hours and then puked.  We tried again- same result.  There was NEVER that whole "self calming" thing with Jack.  In fact, I had no idea what that was until I had Nate and he did it (soooooo weird).  So...after several weeks of trying this, I dragged the twin mattress into his nursery and slept on it, while I weaned him into the crib.  The process took about 3 months.  He could cry it out if I could at least hold his hand through the crib.  He would eventually calm down.  So this is what I did.

When he got a new toy, he would be up all night the next night.  He could not shut off- he could not stop thinking about it.  Most of these toys were planes, so if he had them with him, he would lie there and just continuously spin the propellor- all night.   I would have him leave the toy downstairs, and he would have a meltdown.  I took to cutting a picture of the toy from the box and putting it into his bed with him.  This worked....sometimes.

To this day, Jack wakes up at least 3 nights a week, multiple times.  I have not slept in 6 YEARS.  I had to get a white noise machine for Nathan when he was a baby so that his big brother would not wake him up in the middle of the night! 

So to the professionals who are no doubt exhausted after trying to keep up with him all day the answer is once again, no, he never does get tired.  But me?  I am tired.  John is tired.  After six years, we are really, really tired. 

Dealing With My Own #JennyMcCarthy Backlash...

I am very blessed to have the readers that I do.  You all are for the most part very supportive and nonjudgemental and I really appreciate that.  Today I appreciate it even more. 

Yesterday I wrote about Jenny McCarthy.  I stand by what I said, and I don't think that anything I said would be considered "shocking" to the average autism parent.  I posted a link to my blog in the comments section of an article about this issue on slate.com.  The article was calling for readers to boycott the view because of Jenny McCarthy the anti-vaxxer. 
http://www.slate.com/blogs/bad_astronomy/2013/07/15/the_view_daytime_talk_show_hires_antivaxxer_jenny_mccarthy.html

Never in my life have I been in the presence of such antagonistic, pot-stirring cranky people.  People who very clearly have little to no experience with autism.  Within minutes of posting the article, I was told I was moderating my stupidity, that I was not "interested in science", I was accused of claiming to be a medical expert.  I was told that Jenny McCarthy's son was never autistic, that she diagnosed him herself.  That cracks me up, because he received ABA, and all of the traditional therapies, was diagnosed by a neurologist, and underwent pretty much every biomedical treatment that money can buy.  He was lucky that way, mom could afford it.  Yes there is talk that he had Landau-Kleffner syndrome, not autism- a common misdiagnosis.  It's not for me to say.  Or anyone else- if the EXPERTS don't know, then we certainly don't either. 

Jenny McCarthy's website is called generationrescue.org.  It has a link to find a DOCTOR.
http://www.generationrescue.org/recovery/find-a-doctor-2/search

Here is her page on vaccination:
http://www.generationrescue.org/resources/vaccination/

I see nothing in here that states that she "recommends" NOT vaccinating your children- looks to me like she is telling people to educate themselves, look at their family history, and consider their options
she recommends visiting the website for the National Vaccine Information Center
http://www.nvic.org/Ask-Eight-Questions.aspx
and she recommends that you answer these 8 questions with regard to YOUR family before you vaccinate.

I understand that people feel she is anti-vaccine and who knows, maybe that is her personal view.  However this is her professional website, this is the platform she presents to the world, and in my eyes, it is not dangerous.  Once again, I am not saying I agree with or support her- but the more I read, the more it seems that people are taking her ideals and blowing them way out of proportion.  I also think that giving one individual this much power- that she is a public health risk, yada yada is a tad.....dramatic.  Yes, she is in the public eye.  Do people realize that she served as a spokesperson for TACA (www.taca.org) for years?  Her personality may be a bit....severe at times, but people are taking her stance on vaccines, twisting it, and turning her into a villain and it's just not true.  I sure as heck wish I had educated myself a bit more before I vaccinated.  Would my kids still have their vaccines?  I can say without question that the answer is yes.  I just may have gone about it in a different way. 

Jenny McCarthy , The View and the Uncalled for Backlash

Since when did it become appropriate to permit an individual’s personal opinions to impact their ability to obtain a job?  Especially when said job is on a talk show aptly named “The View”???

There is a huge backlash going on in case you missed it, because Jenny McCarthy has been hired as a new permanent host on The View. 

http://social.entertainment.msn.com/blogs/post--jenny-mccarthys-view-hiring-blasted-as-public-health-threat

People have these types of comments:

"I think a network hiring a homicidal maniac, giving her a forum in front of people who have young children and are impressionable, is the most irresponsible thing I've heard of in a long time," New Yorker writer Michael Specter rants to the Los Angeles Times. "She's very dangerous. It's unfortunate that in our society, scientific evidence is now just taken as some other point of view." 

"Congrats ABC for hiring vaccine crank Jenny McCarthy for her 'outrageous... fresh POV,' [because] actual medical science is so stale and dull," fumes Time magazine TV critic James Poniewozik, who took issue with Barbara Walters' statement that Jenny "can be serious and outrageous. She has connected with our audience and offers a fresh point of view."

Salon takes a harder line: "Dear ABC: Putting Jenny McCarthy on 'The View' will kill children," blares its headline. "The vaccine conspiracy advocate doesn't just have a quirky point of view, she is spreading lies that hurt people."

Adds a pediatrician to the Boston Globe, "By choosing Jenny McCarthy to be a host on 'The View,' ABC made a decision that could end up costing lives -- even worse, the lives of children."

Now, I have my own “views” on vaccines, which I have shared plenty of times.  I think people are being extremely melodramatic about this.  To say that she will cost children’s lives is akin to saying that because a talk show host is prochoice, more abortions will occur. 

I do not agree with Jenny McCarthy’s simplified philosophy about all of this- aka autism, vaccines, nutrition, etc.  She does state that her son Evan is “cured” of his autism.  And I have heard stories of other “recovered” children.  The bottom line is that her son’s “recovery” was due to dietary changes, infusions of glutathione, B12, and intensive therapy.  I know this because I read her book.  It all goes back to the idea that children with autism have an impaired ability to rid themselves of toxins, which like or not, vaccinations do introduce.  But they also come from many many other sources, and even if, as she claims, the MMR vaccine was his tipping point, it does not mean it “caused” his autism.   That is why I am pro spreading out vaccines, not stopping them. 

For all we know, ABC has made her sign an agreement that she will not discuss this on the show.  Even that would be pretty crappy in light of the fact that we are in the U.S. and plenty of other hosts have certainly voiced controversial opinions on this show. 

You know what I think is irresponsible?  Parading the current popular medical opinion out to the public as fact.  There are far too many changes to these theories on a daily basis for me to buy the idea that the medical community as a whole knows what they are doing.  Especially as it pertains to autism.  I have been presented with so many ideas/theories/treatments since the boys were diagnosed that it makes my head spin.  It made me really mad to read these quotes.  Not because they are definitely wrong, but because they assert that the larger medical community is without question, right.  And I think that the jury is definitely out on that.  I base this on Johns Hopkins’ study of mercury’s effect on the immune system, and the more and more widespread acknowledgement that autism is in part an immune modulated disorder.

http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html?pagewanted=all&_r=0

Just some food for thought….

If autism is related to immune system dysregulation, is it really such a huge stretch to consider the idea that maybe, just maybe, multiple injections of substances that are meant to activate the immune system of a typical individual (vaccines) could possibly negatively affect that of an individual with a genetically impaired one?

And if one considers this possibility, is it really appropriate to label her as a “homicidal maniac”?  I think not.

Thank You For Stimming

What a freaking day.

I took the boys to see their developmental pediatrician today, which is always a treat.  Don’t get me wrong, I like him, it’s just always overwhelming, discouraging, enlightening, hopeful, and depressing all wrapped into one. 

For Jack it was more of a “tune up”; try these supplements, let’s get a few more tests, progress is there and we’re happy.  Not to poo poo it, because there were significant changes to be made, but it was all stuff I can handle.  And we also don’t want to make too many changes right now in light of the study.

Nathan was a different story.  I pretty much laid it all out for the doctor (mind you, this is a two hour appointment, not your typical doctor’s visit).  I continue to be extremely worried about Nate’s lack of progress.  I am worried about language and skills, but most importantly right now I am worried about his stimming.  How frequent it is, how intense it is.  I mean we don’t even notice some of it anymore because it’s just the norm- the lap running, the waving things in front of his face, the humming, and the repeating of sounds over and over again.  The constant need to be squeezed- arms, legs, sometimes head.  And I have described this before in these appointments.  But Nate hates any doctor’s office and usually curls up on my lap.  Today he seemed to relax a bit- he’s been to this office a lot now, and he got restless after we were in that small room for a while.  He got down; he ran his laps, made his sounds, waved his fingers.  The “full Monty”.  And the doctor saw all of it.  You could see his level of concern growing as he watched- as were the number of recommendations he was writing down.

One of the things he said is something I have been saying all along.  This just feels like yeast- the stimming, the grainy poop (sorry), the crazy laughter.  The fact that he improves on nystatin but then immediately reverts to his old behaviors when it’s stopped.  All of these things point to yeast.  Not to mention that this issue tends to crop up in kids (note that these kids also have a genetic predisposition to this stuff) who are on lots of antibiotics when they are very young, and also on nebulizers.  Yes, Nate was on both.  Repeated upper respiratory and ear infections.  Lots of wheezing, which has since resolved.  The antibiotics kill off all of the good bacteria in the gut and leave it vulnerable to yeast growth.  Repeat this multiple times and you could have a real mess on your hands.  That’s where the doctor thinks we might be.  If I could offer any advice to parents of little guys (and I usually don’t dispense advice in this blog) it would be this:  put your kid on a probiotic.  They have powdered ones you can mix in with breast milk or formula or even water.  Give your little one the good bacteria.  It’s a relatively cheap way to prevent this yeast overgrowth.  Our world is TOO antibacterial at this point and I really believe it is causing more harm than good.

Long story short, the doctor wants me to send Nate’s urine for amino acid testing.  The results of this testing show if certain byproducts of yeast or clostridium (another chronic gut infection) are present, and thus confirm the presence of the issue.  There are few direct ways to test for this, but this is one of them.  Of course this is not covered by insurance.  We have put it off and treated empirically for suspected yeast.  It’s time to bite the bullet and send off a check for $300 to have my kid’s urine tested.  It’s just time.  So he has his specimen collection bag on tonight- plus two diapers and zip up pajamas and tomorrow FedEx will pick up his pee (still makes me giggle).  Once the results are in we will use them to guide our next steps- likely stronger probiotics, a stronger round of fluconazole, flagyl if needed for clostridium. 

The other step we decided to take today was to start a “mitochondrial cocktail” for Nate.  This sounds scary somehow right?  But really it’s just a certain combination of supplements that help Nate’s mitochondria to function better.  Apparently some of Nate’s more recent lab results have been pretty indicative that this is a problem for him.  Here is a little more info on what that means:

http://mitochondrialdiseases.org/autism/

What is the role of mitochondrial dysfunction in ASD?

All ASD is not mitochondrial disease. However, mitochondrial dysfunction has been found repeatedly to be prevalent in this group of children and adults. The brain and muscles require a tremendous amount of energy to function normally. Deficiencies in the ability to fuel brain neurons – as may occur with mitochondrial dysfunction – could lead to some of the symptoms of Autism.

 

Because mitochondria make ATP, as well as perform vital cellular tasks, mitochondrial dysfunction can result in less energy available to fuel the high-energy needs of the brain and muscles, and also leave free radicals in the system where they can cause damage. Overall, there is a large and growing body of research showing that individuals with ASD often have significant mitochondrial dysfunction, which may be a cause of, or contributing factor to, their development disorder.

So here is what the “doctor ordered” (before reading take a deep breath- I know I have to):

Carnitor 3 tsp 3x a day

Ester C 1000mg 2x a day

Vitamin E 400 IU 2x a day

Bcomplex 100mg 1-2x a day- B1, B2, B3, B6 (already gets B12 injections)

Alpha Lipoic Acid 1000mg 3x a day

Biotin 10mg 1x a day

saccharomyces boulardii (second probiotic)

and continue everything he was on previously

And to be honest, there are 2 more that I, the nurse, cannot decipher due to his chicken scratch so I will have to call the office about those. 

Can someone explain to me how on earth I am supposed to get all of this into a child who doesn’t swallow pills??  Seriously?  I decided to experiment with different substances to mix these with this evening- thus far he has rejected almond butter, chocolate syrup, and applesauce.  Yet he somewhat accepted fish oil, which he gets every day.  Any

suggestions are welcome.

I want to thank Nathan for stimming in the office today.  I think it was a very good thing for the doctor to see him in action.  I think it pushed him to be a bit more aggressive.

That’s about it for tonight.  Excuse me while my head explodes…

Speech And The Food Factor

Nate's language had stalled over the past few months, but right now it seems to be picking up again.  I am not naive enough to think that "this is it", but I am enjoying it, that's for sure.  Food has always been the ultimate motivator for Nate, as it is for many kiddos. His first words revolved around food and any progress that occurs seems to be at mealtime.   He has been saying "more" forever, and eventually he did add "cup".  What happened though is that he started identifying every object as cup.  And the other things he likes seem to start with c as well- corn (popcorn), chip, chicken, etc.  Below you will hear him say more cup to start and then correct to more chip.  You can distinctly hear the "ch" sound in there.  Not that big of a deal for most, but for us- well, for us it's almost tear-worthy.

Just Add Water...

And the grocery store.

Jack has been doing pretty well lately.  It “feels” like the meltdowns have been a bit less frequent and maybe shorter in duration.  This of course makes a huge difference for our family and really gives a sense of calm to the household (relatively speaking).  I feel like I have been able to discuss things with Jack to a certain extent, actually reason with him at times.  It’s amazing.  As parents, the smallest things can make a huge difference right?  Like Jack is finally confident in opening his car door by himself.  Just having that one task taken off my plate when getting both boys situated in the car is awesome.  So something like a more relaxed atmosphere in our home has a huge impact.  Jack is also doing very well socially at camp.  There are several other little boys who he plays with every day and he looks forward to going.

Is it the medication?  Is he maturing?  The differences are subtle enough at this point that I really can’t answer that.  I still believe that he is likely on a sub therapeutic dose of his medication, and since he has been holding steady at 19.5kg since May, I don’t think that’s changing anytime soon (once he hits 20kg, the dose will be doubled).  All I know for sure is that there have been some differences.

In typical, comfortable situations.

Today brought that all home faster than you can say lobster. 

It has been raining all day, and on days like this, I love having breakfast for dinner.  And Jack likes making pancakes with me.  So when I went to pick Jack up from camp I decided we would run by the grocery store and pick up a few things so we could make it tonight.  I should have known the minute we stepped outside and Jack saw that it was raining that this was not a good idea.  Little adaptations that we all make to changing circumstances are so difficult for children on the spectrum or really any child with sensory processing issues.  If you tell him to run for the car because it’s raining he stands stock still and screams about it.  When we drove through a puddle he screamed at me to stop. The sound of it and the different feeling of it really bothered him.  He kept telling me he was going to turn the rain into fire.  Why he thinks this would be better is beyond me, but that was his plan.  He couldn’t bear to leave the paper airplane he made at camp in the car when we got to the store but then he had a meltdown because it got rain drops on it. 

It all went further downhill when we went into the store.  He is obsessed with the lobsters, like that is all he can talk about from the minute we go through the door.  I made him wait to go see them until we reached that point in the store.  He yelled when I picked up mushrooms (for me), he cried for gluten free chocolate covered pretzels, (which I gave in to) and then he ran for the tank.  Nothing too bad so far….but then he flipped out because one of the lobsters was missing its claw.  Freaked. Out!  I reminded him that it will grow back (not that there will be any time for that, but in theory it’s true), but then he spotted a lobster with barnacles which also upset him.  Then he saw that one had managed to get out of those little rubber bands they wrap around their claws.  I jokingly said he’s going to escape and that did it.  He started screaming “save the lobsters! Save the lobsters!”  When I say screaming, it’s not an expression, he was literally screaming.  People were staring.  My face was turning bright red as I took deep breaths and tried to pretend this was perfectly normal.  I am a good mom, I am a good mom.  He knows right from wrong, he just can’t handle this atmosphere.  This is what I say to myself at times like these, and repeat, and repeat and repeat.

He was pretty amped up after this, but did ok through most of the store.  He begged for things, but that’s to be expected.  A lady told us she wanted sausage too when we were on that aisle and Jack yelled at her that she couldn’t have it- he thought she was taking ours.

The culmination of this lovely excursion had to be when I opted to go to the self-checkout lane.  The other lanes were swamped and frankly I wanted to get the hell out of there. Jack was very distressed by this situation.  “There’s no one in a yellow shirt, where’s the yellow shirt guy??”  He didn’t like me scanning things (apparently when I make the beep it’s offensive), and he tried to grab everything off of the belt.  If you’ll recall, these belts are extremely sensitive to weight, so consequently, I kept hearing that annoying robot voice telling me to “please return all items to the scanner scale”.  He didn’t like that either.  Lastly, apparently it is also offensive when I bag the groceries- “I’m gonna eat those bags!!!”

He totally lost it on the way home- blaming it on his wet paper airplane again, but the truth is he was sensory overloaded.  Not his fault. 

I rarely take Jack to the grocery store, even with preparation.  For a child that is a sensory avoider, there are just too many unknowns.  Too many things that can set him off.  Nate loves the grocery store.  He is a seeker.  Another good example of this is Jack’s hatred of the rain, walking in the rain, etc.  Meanwhile, I tried to get Nate to stay near the umbrella today and instead he stood away from it, head tilted toward the sky, laughing like a little hyena when the rain hit his face. 

Clearly I let the last week or so of improved behavior go to my head.  It’s easy to forget how sensitive Jack is to sensory input, and thus, changes to his environment.  This was a good reminder.  It’s important to continue taking him places or this will never improve, but planning is needed, and rain OR store would be good, but not both.

Lesson learned.

Published!!!

Just thought that I would share….I stuck my neck out a bit and submitted one of my posts to a special needs website.  It was published today- whoo hoo!

http://www.spdbloggernetwork.com/2013/07/12/trial-by-field-trip/#more-74332

Here is some information about the site:

Established in February of 2011, the Sensory Processing Disorder Blogger Network is a community of special needs parents committed to supporting each other’s journey by writing about their sensational lives and sharing them here.

It’s nothing huge, but it’s a step, so I’m really excited about it.  Thanks as always for all of your support!

Naughty

And I mean that in the nicest way possible.  Naughty Natey.  He has been quite the little troublemaker this week.  And this makes John and I grin at each other and say “isn’t that great??” 

Let’s see, he figured out how to open our front door, and he has run away from me laughing on multiple occasions (that part is not amusing).  Don’t worry; the front door is now locked at all times.  He figured out how to open his closet door and has been hiding in it several times when I come in to check and see if he’s sleeping.  He has been knocking over his bedside table (it’s a little pedestal table) every single time I put him to bed in protest, I have had to take it out of the room.

He broke one of my willow tree figurines (the one of the married couple from our wedding no less) by standing in our bay window, leaning over to the piano and swiping it off.  John is very upset because his legs are broken.  Ha.  He has taken to coming out of his room every night in the middle of the night and into our room, at which point he lies between us and kicks us both repeatedly.

He keeps trying to climb back into the bathtub when his bath is over.  When I tried to get him out the other night he made himself limp and then laughed at me while I tried to lift him out.  He is obsessed with potato chips, the other day while I was still working in the other room he grabbed the whole bag off the counter- I found him and our dog Riley chowing down, one with his hands in the bag and one with his nose in the bag- like little co-conspirators. 

So he is scheming.  He is really thinking about what he is doing and he is wreaking havoc.  These are yet more examples that could go in my previous blog post, Accomplishments Only an Autism Parents Could Love http://jackandnatesmom.blogspot.com/2013/06/accomplishments-only-autism-parent.html

I love to watch those little wheels turning in his brain, I consider this major progress.  Not to mention some of his verbalizations.  When he was in our bed the other night he was being really loud, I kept saying “shhhhh”.  John and I heard him repeat this several times, and at one point I’m pretty sure he said “mama said shhhhh”.  Of course then he laughed and kept going, but still….

I will say I am on high alert for loud noises, things being knocked over, doors opening etc, but this feels like a pretty “normal” parenting concern.

100% Worth Watching- As In **Please Watch**

One of my fellow  bloggers just posted this video, and it's one that has been and should continue to be shared within the autism community.  I think that for those on the outside looking in on “the autism community”, those who don't understand how emotional it is to be on this journey, or who haven't taken the time to really think about it, this brings it home in a very real way.  I have to be honest and say that even though this video has been all over twitter/you tube  for many months now, I have never watched it.  Katy Perry and a little girl with autism sing "Firework".  OK.  Well, I watched it tonight and the tears are still streaming down my face. 

THIS is what we are striving for for our children, all of us.  We want them to feel like regular kids, to feel like they are good at something, like they have value.  For Nathan, we just want him to talk to us.  Every time I hear a story of a nonverbal child becoming verbal it gives me just one more sliver of hope.  Makes me want to spend extra time working with him, giving him everything I have.  Every autism parent goes through periods of hopelessness- it's natural with the roller coaster we are on.  Here is one more thing to cling to- also, really listen to the lyrics- I feel like this song now "belongs" to autism, if that makes any sense.  I am sure that's not how it was originally intended, but it most certainly fits, like a glove.

Please watch, it's worth the 9 minutes I promise