Jack and Baby Jesus

For my family, and most of my friends, this title may bring back memories, maybe even illicit some giggles.  I have many many serious things I could be updating you on right now- IEP meetings called, letters written to the school by therapists and physicians, new medications, more shots, first weeks at school, but tonight I choose funny.

After a trying week, I decided that tonight would be the night we would put up Christmas decorations.  We have Nate's birthday party next weekend, so we needed to get it done anyway.  We had some drama with our tree, ended up with a new artificial one, as getting a real tree is not an option in your house when your three year old is obsessed with pine needles and twirling them.  We would have no tree left in a week's time.  Anyway, so there I am getting out the decorations, including my nativity set, which I adore.  Jack started talking about it right away, about the angel Gabriel, about Jesus coming again, I am really impressed by all that he has absorbed.  Then it happened.  He started in again.  Anyone remember last year?  For those of you who only know me through the blog, this is a bit awkward.

My five year old son, with Asperger's, likes to pretend he's baby Jesus.  Sweet in some ways right?  Well the problem with this situation is that as with all of his  interests/obsessions, Jack takes this to the extreme.  Remember how when he is being a baby airplane I can call him nothing else at any time?  The exact same way with baby Jesus.  As in "mommy, tell me, baby Jesus, that it's time for a snack".  Or, "I'm baby Jesus my best friend is Santa".  Or "tell me, baby Jesus, stop knocking the ornaments off the tree".  I am worried that he will continue with this and that it will progress to the level that it did last year.  I found it really really difficult last winter to tell Jack "baby Jesus, go make a poop or we're not going to the movie."  However, he would respond to nothing else.  Or, "baby Jesus, stop saying bad words, Santa is watching".  Or "baby Jesus, it's time to go upstairs to your room, you're in time out.".  I mean I was raised Catholic- it just feels wrong to tell baby Jesus what to do!!!!  So far it's been pretty mild, I've only really had to serve baby Jesus hot cocoa while he decorated the tree.  Of course John LOVES that Jack is baby Jesus, because that makes him baby Jesus' dad.  Sigh.  Sorry honey, it doesn't work that way. 

Welcome to our holiday season :-)

Nagging Thoughts

I wish I could say that this post has a clear purpose, but it doesn't.  I am feeling melancholy today with no real reason.  Things are going well, Nate had a better day at school today and while they won't get the bus straightened out this week so I will need to continue to pick him up in the afternoons, everything else is going smoothly.  I am giving Jack his methylcobalamin shots while he is sleeping and that is going well.  He successfully swallowed his first pill yesterday.  All good stuff.  And even more so- Nate is about to be 3, John and I are about to celebrate our 8 year wedding anniversary, which we are both VERY proud of, and Christmas is coming.  What on earth is my problem?

I think that much of my mood lies in the fact that I am chronically overwhelmed.  Sometimes I just wish for a little bit more stability.  I wish that I wasn't constantly analyzing the boys' supplement doses and schedules and trying to find new schemes to get them to take them all.  I wish for fewer meetings, doctor appointments, etc.  And I know my boys are physically healthy and I am grateful for that- but that does not mean this is easy.

Of course the other piece of this puzzle, in my mind, is remembering where we were last year at this time.  It's very painful for both of us, and for our families.  It was wonderful to be able to, for the most part, rewrite our Thanksgiving experience this year after a very negative one last year.  And I know we will do the same for our anniversary, Nate's birthday, and Christmas and New Year's.  But the memories still hang around there in the back of my mind.  Almost like a trauma.  So while I am so thankful for what I now have, a happy family, I am also mindful of what I almost lost.  And it gets to me.  I never want to live through something like that again.

Rough First Day

I thought it would be a little bus....but it was BIG.  Too big for my almost 3 yr old.  There were safety "harnesses" inside, just not what I was expecting.  Today was Nate's first day at his new school.  He liked the bus.  And that was all he liked.  We'll get there, just more adjustments. 

Nate, blissfully unaware that I was about the throw him under the bus- sorry I couldn't resist.

I set myself up to have a crappy day although I really didn't mean to.  I had scheduled myself to volunteer in Jack's classroom today long before I knew that Nate would be switching schools today too.  And I didn't want to back out at the last minute.  So after I put my precious cargo on the bus and had a good cry, I went in to Jack's school and played "What's Gnu" with the kids.  It was kind of fun.  I finished up around 11:30, got home around 11:40 and got a call from Nate's teacher at about 11:45.  She said that somehow the transportation people had only gotten a request for Nate to be taken to school, not home.  I guess they thought he would hitch it?  So he was sitting there all by himself with the teacher.  I went to go get him and the teacher let me know that he cried most of the morning and only calmed down during snack- that's my boy- we love our food.  I know it will get better- this was just not how I wanted his first day to go.  Did I mention that the sitter wasn't able to come today?  So Nate and I made calls together all afternoon.  Some days I wonder what the heck I think I'm doing.  Today was one of those days- just felt incompetent all around.  The best part was when I was driving to get Nate and the all Christmas radio station started playing "Run Run Rudolph."  Perfectly fit the theme of the day!

Moved to Tears

Thanksgiving.  What a day.  I haven't been able to post because I have been busy Black Friday shopping- anyone else get a Wii for $12???  Thank you Johns Hopkins Hospital for those Target gift cards!  I would not, however, recommend going to Wal-Mart on Thanksgiving night (or really ever).  Police backup was present, and they were needed.  When I heard a policeman say "the first person who touches me is getting arrested"  I decided it was time to hit the road.  Sheesh

As I mentioned before, both of my sisters came for Thanksgiving this year, as well as my brother in law and their kids.  What a great day!  Jack first stalked his older cousin Will (who was incredibly patient by the way) but eventually found his way to his cousin Graeme who is only a year older than him.  They played baby lions for quite a long time and had a blast.  Both of my boys sat at the kids' table for the whole meal, granted we distracted Nate with gluten and dairy free rolls, which are apparently heaven.  It's nice to see that the kids can go quite awhile without seeing each other and pick up right where they left off.  My sister lives in Indiana so visits really take some doing.  That's just how it was with my cousins growing up and we can launch right in to our banter when we see each other even now.  

The "star" of the day was my little Nathan.  We are almost at a week into the tripled dose of methylcobalamin now, and let's just put it this way, two of his grandparents were moved to tears on Thanksgiving.  He is much more assertive in asking for what he needs these days.  While I was standing talking to my mother in law, who also came for a visit, Nathan walked over to me, pulled on my leg and said "come up" clear as day.  Instant tears in my mother in law's eyes.  And then when we were getting ready to leave Nate turned to me and said "I go bye bye".  It was my dad's turn.  He actually confessed that he had never heard Nathan say any words.  I know that I am always telling people that he is using new words, improving, making more eye contact, etc, but I guess that seeing really is believing.  And I am so glad that they both got that chance.  Because words coming out of Nathan's mouth are such a miracle- every time I hear them, I get teary too.  It takes so much work for him to use them, and I firmly believe that the methylcobalamin is really really helping.  I think the rest of our family now agrees!  What an awesome day. 

Gratitude

I was just about to sit down and go through the rest of my "list" of things I am grateful for.  The bottom line is that if I did this, I would end up mentioning things that really don't mean that much, and I would rather get to the point.

I am so grateful for my family.  For my cohesive family, for my intact marriage.  For the love that we all share and for all of the hard work we have been able to do because of this.  I never in a million years thought that I could be this happy after such a difficult period.  But my husband still loves me, I still love him, our children are beautiful, they are doing better ever day.  We have a lovely home, we both have jobs, we have wonderful schools for our children and caring practitioners who are willing to go the extra mile to help the boys.  My parents and John's mom have been amazing to us over this past year- despite all of the difficulties we have had their support for us has never once wavered.  They have been in favor of our marriage, they have sacrificed their time over and over again to help us with this.  I am thankful that we found Retrouvaille and then a wonderful marriage counselor.  Although I understand now more than ever that he has been merely a guide, that John and I have been the ones doing the work. 

My sisters- I am so thankful for them.  I can't wait for tomorrow, I get to see both sisters, my brother in law, my niece and nephews and my parents.  We haven't all been together for a holiday in a long time.  It amazes me that the problems John and I have had, especially the boys' diagnoses, have brought my family so much closer together.  That's what counts- when problems surface, when crises hit, who is there?  When you are at the lowest point in your life, when you are fighting tooth and nail for the things that are important to you, look around you.  Who is still standing there in the end?  The people who truly love and support you- and the family that you are fighting for.  I feel very very fortunate to have the family that I do, to have the friends that I do.  The friends that I have?  I trust them all.  They are still here after the worst year of my life (which has turned into one of the best).  They are there crying with John and me, cheering for every single one of Nate's words, texting me when they know I am giving Jack his first B-12 injection to make sure I'm ok.  They're asking about my boys when they have a preemie in the hospital, driving from Indiana and Pennsylvania to be here for Thanksgiving despite a million reasons why they shouldn't be able to.  They are constantly handing me articles in an effort to help me find solutions for the boys- we can't go to one counseling session without getting a new article.  I go to the boys' OT and I am handed books, my mother in law mentioned that one of her students' parents talked about something called GABA and have I tried that?  Everyone is getting into it!  The boys feel this support too, I know it. 

I never thought I would say this, but I am grateful for the strength that I never knew I had.  I am learning that I can live this life, that I can continue to fight for the boys, and I can still be me.  This blog is one of the best things I have ever done for myself- it truly is my diary.

Happy Thanksgiving!!!!!

Capturing My Babies

I mentioned a few weeks ago that we had our portraits taken.  It was a freezing day and Nate was getting pink eye and crying for most of the session.  You would NEVER guess that looking at these shots.  Not gonna give em all up right now, but can't resist posting a few. 

I just couldn't be happier.  Oh wait, yes I could.  Today Nate said the following:

"I go up"

"go out back"

"go up"

"cat"

ALL NEW!!!

Is Nothing Sacred???

http://www.people.com/people/article/0,,20649857,00.html

Really Elmo?  REALLY???  An old friend of mine commented on FB last week that she was relieved when the first accuser recanted- being the cynical person that I have become I commented that I wondered how much money was involved in THAT.  I HATE it when I'm right about stuff like this.  Nathan sleeps with an ELMO doll in his bed- I want to remove it.  I recognize that this is not rational, and I don't care.  How many people out there own a tickle me Elmo???  Bet you don't want to hear THAT giggle anymore.  What was he laughing about???? 

What is wrong with the world?  What's the deal with sex?   This has nothing to do with sexual orientation- I would feel the same way if these had been underage girls.  Does no one see that their actions can destroy lives?  Especially a person in a position of power, or God forbid in the public eye.  And yet does that cause people to think twice?  To maybe, I don't know, CONTROL themselves?  Apparently not.  I. just. don't. get. it.  And I bet there are a bunch of parents out there right now who let their kids go on Sesame Street- bet they are terrified and asking their kids whether grown or still young, if anything inappropriate went on.  There are claims that this guy was trolling gay telephone chat lines for underage boys- that's where he met his second accuser.  That he "groomed" them by gaining their trust and then doing nice things for them. 

Today I am thankful that neither of my kids were ever big fans of Sesame Street.  And disgusted.  I am also disgusted. 

Just Another Day....

Of thinking "if I can just get through today".  And I did.

First up was Jack's parent teacher conference.  I received an updated IEP on Friday and was shocked when it said he was progressing sufficiently.  Ummm....wait a minute, this is not what a million email conversations have indicated.  Well apparently he is "progressing sufficiently" DESPITE all of this.  AKA the kid is brilliant...duh, I could have told you that.  This doesn't change the current issues that we are dealing with.  I was impressed by all of the adaptive tools they have in place- a wiggle seat, a lap pad, a slanted writing surface.  They are also using the weighted pencil.  He is viewed positively by his peers despite his interruptions in class and the headphones that he continues to wear on his ears all day every day.  We talked about strategies to slowly wean him from this- setting a timer for how long he can wear them.  I advise against one that rings for obvious reasons.  Ha.  But seriously, it is amazing how traumatized he was by the smoke detector going off at home.  He noticed the visual fire alarms at school for the hearing impaired and has become obsessed with them.  We went to the mall and a movie yesterday and he pointed out every single one to me and asked if they were going to go off.  We have a lot of work to do on this.  The school board advocate apparently did acknowledge that he needs more services.  They have assigned an aide to him for 30 minutes a day during the most crucial work he does.  Yes I said crucial, yes he is in kindergarten.  Sigh.  So the issue at hand is that this is still not enough, per the teacher's report, and not only that, this is something being "granted" to him "for now".  If another child enters the school with a behavioral issue or more needs, they will reallocate these services. The reason?  They are not written into his IEP.  Next step- guess who has to call the IEP meeting?  Yours truly.  His next one isn't scheduled until the end of February and that is too long to wait.  I have been dreading this one.  I need to do my research, know our rights, etc.  I told her I will do it, but would like to get my almost 3 year old started in his new program first.  She and the special educator were present for the conference- it last almost an hour, which seems like they spent quite a long time with me- we got 15 minutes tops last year.  The teacher was really going through the "back door"  procedures with me, talking about red tape, etc.  I could tell that the special educator was getting a titch annoyed.  She is a little green- just started at this school in September.  Jack's teacher turned to her and said something along the lines of "I know this is your area, but I have been at this for 25 years and I know what I'm doing.  AND I have been through this myself as a parent."  OK, how do I keep getting this lucky???  No wonder she has been so awesome!  She has been on the other side of that table advocating for her child who needed extra help.  Makes total sense now.

So with that plan in place and the knowledge that despite all of his challenges he is progressing, I headed back to work.  At the end of the day my mom came to watch Jack so that I could take Nathan to his new school for "orientation".  He fell asleep on the way over and slept through much of the meeting.  I felt really bad about this and kept trying to wake him, but he was OUT.  When I finally got him up at the end of the meeting he would go no where near the new teacher--- with time I guess.  We talked about the routine, etc and the teacher wanted to know a bit more about Nathan.  In general it went very smoothly and they were very receptive to his dietary restrictions, etc.  Seems like a good program- makes me a little sad that we are going from a 1:1 ratio to a 1:2-3 ratio of teacher to student, but it was bound to happen.  It sounds like the days of "drills" are over, this will be a different approach.  And not all of the children in the program are on the spectrum, they are all developmentally delayed, but there will be a wider range of skills and abilities.  I guess I just have the same concerns that any parent would have when sending their kid to a new school, multiplied a bit by the fact that I am afraid he won't be able to express his needs.  He will be 1 on 1 with a aide on the bus, so that is reassuring.  That being said, he gets picked up at 8:35am and school doesn't start until 9:10.  And school ends at 11:50 and he isn't scheduled to be dropped off until 12:35.  That's a really long bus ride for a little guy.  The next few weeks are going to be a huge transition for him.  I am feeling lucky that our sitter will stick around for now, despite losing lots of hours of work.  She is trying to sell her house and move closer to her grandkids, so it doesn't really make sense for her to look for a new job right now.  This will be a very good thing for Nate- 1 big change at a time.  OK, I vow that this was our last kid meeting until January.  Only thing I can think of is Nate's 3 year check up.  Piece of cake.

Take That!

OK, so first and foremost, I stopped the leucovorin on Friday morning.  Saturday morning we made it to 4:30am (as opposed to 1am), then he took a 3 hour nap on Saturday.  Sunday morning he made it until 5am, then took a 2 hour nap today.  Let's pray this trend continues.  Feeling good that I figured this out before we all went stark raving mad. 

In even more exciting news, Nathan has apparently decided he would like to take this opportunity to say "screw you" to the 1st percentile for speech and comprehension.  And he decided that the best way in which to accomplish this was to blow mommy and daddy's minds this weekend.  Here is what we have heard:  up, eat, pat, nose.  Those are definite, and for the first time, all this weekend.  Pat and nose came from some of his ABA exercises, having him "touch nose" and "pat head".  I ask him to do these at least a few times a day, and yesterday morning he decided to do them to me instead of on himself.  So he touches my nose and nonchalantly says nose.  Then pats my head and says pat.  Who is this kid???  He said "open" at OT.  He also has "remastered" ready, set "go".  My legs are sore from lifting him so many times, but I'm good with that.  I went to sit down after doing it like 15 times last night and he came over to my chair, grabbed my hand and said "come" until I laid back down and did it a few more times.  He also easily transferred this "game" to another purpose, which is an even better story. 

I rarely mention our dog, Riley, but yes, we have a dog.  We got him literally the week we returned from our honeymoon, so we have had him for about 8 years now.  He was our first "baby", the sun of course rose and set on him back in the day.  He has tolerated a lot from the boys over the years, and we have tolerated a lot of his barking waking them up.  He usually goes after a bone if he wants to play these days and will literally drop it in your lap and then begin a staring contest until you get up to play with him.  Last night he went for a squeaky toy which he hasn't done in a long time.  He was having a "puppy spurt", running all over the downstairs and basically going ape.  Nathan could not stop laughing at him.  So as I was throwing the toy, I started trying ready, set, .....and he got it right away....go!  After a few minutes he started picking up the toy when Riley dropped it and throwing it for him.  Didn't go very far and Riley seemed a bit confused by this.  Meanwhile, John and I were both staring, mouths wide open.  I have never seen Nate directly interact with anyone besides John or me at home, let alone the dog.  This was huge for him!

All such positive changes this week.  And tomorrow I increase his dose of methylcobalamin again.  Keep your fingers crossed.  This progress is surely no coincidence.  I am hoping for a really good week.

Moving on

Well looks like we made it through today- on fumes, but made it through.  This morning was very emotional for me, although Nate really didn't understand what was going on.  We took balloon cookies in for the kiddos and I put together a little gift bag for each teacher from bath and body works.  Honestly, it wasn't enough for all that they have done for our family- they deserve so much more- unfortunately, I can say that about many, many people in the boys' lives, and I don't have the money to do what I would like to.  I have the tendency to try and express myself in this way, but now I reserve it for a very few people close to me.  I missed John this morning- he was at work, but I wish that he could have been there.  Nate's morning started off with, of all things, a freaking fire drill.  Seriously?  This is how different the boys are- Jack is STILL wearing headphones at school after the "trauma" of the fire alarm going off.  Nate had a hissy fit, not when the alarm went off, not when they pulled him from the classroom, but when they made him go inside, lol.  He wanted to play with leaves.

Nate never got past having to leave me when he got dropped off at school.  He did fine when it was the sitter who dropped him off, but he always had to be physically "moved" inside when mommy was behind the wheel- exhibit A.  I stayed for class today, just to observe a little bit and personally thank all of the teachers for all they have done for Nate.

Natey with three of his teachers

Not gonna lie, I cried like a baby....oh well, I make no apologies.  This was the most intensive intervention Nate is every going to get through the school system.  On paper, he has made little progress.  He remains in the 1st percentile for both speech and comprehension.  That's hard for ANY parent to swallow.  Will it always be this way?  I really really hope not.  But the teachers' outlooks are decidedly less sunny than they were last January.  Maybe a change of technique, change of scene will be good for him.  We said goodbye and headed out.

going, going.....
that took literally a block of driving

I let Nate sleep for about an hour and a half and then we had to go to our speech program "taping".  The minute we walked in the door all Nate would say was "go, go, go".  He wanted none of it- but hey, at least he was telling us.  I managed to get him to do ready set go for the camera, but the other parents are going to get a lovely view when they watch this, as I had to lie on my back and airplane him into the air with my legs in order to get the desired response.  Not my best angle, haha.

We headed out to Whole Foods to shop.  He wanted bunny crackers.  We were standing in line to check out and the cashier was talking to him- he was purposefully ignoring her, and they she started talking to him about his bunny crackers.  He looks at her and nonchalantly says "bunny".  Holy crap!  I totally played it off, like oh, yeah, he does that all the time.  Meanwhile, I called John at work to tell him about it.

Nate wanted to stay outside and play with cobwebs, his current fascination when we got home.  Since he is about to turn 3, I decided that I would take some pictures....

In a little over a week I am going to put this boy on a school bus.  Holy moly. 

Dear 3am....

OK seriously.....ugh.  Today is Natey's last day of ABA- I want to drive him back and forth and give all the teachers their gifts and the kids their special snack.  I fear I might run off the road.  Then Natey and I are supposed to have a video taped "play session" for our More Than Words class.  They have bean bag chairs in the play area in case the kiddos need to crash (throw themselves on something).  It is likely that both Natey and I will be doing crashing of another kind.  Oh and I am also working.   I am not just decreasing leucovorin in the morning, I am going to stop it, wait a few days, and then restart the lower dose again.  I'm not taking any chances.  This is crazy.

Could it "B"?

Nate has been on methylcobalamin shots since about February.  This is an activated form of vitamin B-12 and it has been found to be helpful to people with autism, especially those with the MTHFR gene (which Nate has).  The dose was increased in May.  We have definitely seen improvements in Nate with this addition, increased eye contact for sure, and slow steady progress in other areas.  The idea of giving shots for many parents is appalling.   I have been able to handle it with Nate- he was so dazed when we first started the shots that he didn't even react to the needle in his bum.  Every once in awhile I'd get a whine, but honestly he cried harder when I wiped his nose- no exaggeration.  As he became more aware, he started crying with the shots, but now he has progressed to being mr. attitude about it.  He runs away, laughing, and then after the shot he rubs his butt cheek while glaring at me just long enough to get his point across and then he goes back to whatever he was doing. 

When we went to see Dr. Brenner last week he stated that since Nate is a "responder" to the methyl-B12 but has not made a ton of progress we should go ahead and increase his dose.  I had been giving him 0.1 cc on monday wed and fri.  He increased it to 0.3 cc three times a week, but since I still had about 6 injections of the original dose he suggested I just double up on those for the next week and then go for the full increase when I refill.  So for the past week I have been doing double shot duty- Natey's poor bummer.  That being said---- there IS a difference.  An aside, these effects tend to take place very quickly, within days.  There are some kids where nothing is seen for up to a month who still end up being responders, but that is not the norm.  Once a child is identified as a responder they need to continue this treatment for approximately 3 years.  It's a small price to pay if you're seeing great improvements.

So back to the changes I am seeing in Nate- more repetition.  He is pointing to all of the different animals in his books when I say "touch _____".  He is choosing between 2 books.  When he was making a turkey at school today he said gobble.  I find him literally staring into my eyes with an intensity I didn't know he had in him.  He is tantruming more, oh joy.  There is just an over all increased awareness.  Then today I saw some physical proof of improvement.  I am not going to go into all of the science of it, plus it's kinda gross, but suffice it to say that many many children with autism have significant GI/poop issues.  It is linked with the MTHFR gene, impaired methylation, which makes sense since other individuals with this gene mutation tend to have diagnoses like IBS and crohn's.  Today, Nate had his first solid, non-grainy, and not nasty smelling poop in I can't even tell you how long.  I did a complete double take.  I know you are all thinking that all poopy diapers smell- I beg to differ!!!  We are talking BAD!  Normal poop smell is pleasant after that.  I believe this improvement is a result of the increased dose of methyl-B12 and the addition of leucovorin last week.  I believe his little system is functioning better.

Despite all of the positives, there has been one negative- and that is MAJOR sleep disturbances.  Now initially I would have said that this was more related to the fact that he is transitioning to a big boy bed, but he had several nights last week when he slept through the night.  The last 3 nights Nate has been up for literally 4 hours in the middle of the night.  And it's not that he was just awake, he was WIRED.  Reminded me a bit of Jack when he is going through a bad sleep stint.  I gave Nate a double dose of melatonin at 3am this morning and it did nothing.  I was starting to feel bummed out, as this can be considered an "intolerable" side effect of the methyl B12 if it persists, so I started googling my little heart out as usual.  Found this in a presentation given at a TACA conference by the foremost expert in methl-B12 and autism.

1. Folinic acid should be added after the first 5-week clinical trial but not at the same time as Methyl-B12. It should be added alone and its dose should start low and then be incrementally increased to see how it is tolerated. From my research, approximately 20% of children become hyper and/or cannot sleep when folinic acid is added.

So we added leucovorin- an even more broken down/active form of folic acid than folinic acid.  Guess what?  I increased the dose on Monday!  Can I say bingo now?  So tomorrow I will cut the dose of this and see if we get some sleep.  I really don't want to have to decrease the B12 when I am seeing so much positive, so I hope I am right about the leucovorin being the culprit.  Keep your fingers crossed for us.

Resources for ya:

http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/

http://www.drneubrander.com/

This is What Cute Looks Like

Yes I am biased, but seriously.....

Giving Thanks

After a day like today, I could sit and stew- it would take no effort at all.  I am extremely overwhelmed after what I thought was our last "big" meeting for this fall- this is not the case.  Nate will be starting his new school, taking the bus in less than 2 weeks, the Monday after Thanksgiving, and there is A LOT to be done.  The meeting was rough.  But here I am.  And I don't want to stew.  Because Natey was running around and laughing this evening without a care in the world.  And that's what matters right?  So instead, I need to do a little catch-up.  I can't get myself on to Facebook daily to participate in the what I am grateful for thing for November, so since today is the 12th, I am just going to stick my entries on my blog.  I will make a committment to do it once a week for the rest of the month.  That's my best offer, lol.
12 things I am grateful for:
1.  The fact that my friend Helen's sweet baby boy, who is a preemie, was able to come home from the hospital.  Such amazing amazing news.
2. My husband, who turned down a fishing trip this morning in order to accompany me to Nate's IEP meeting- thank you!
3. Both of my boys' wonderful teachers, who constantly go above and beyond to make sure their needs are met.
4.  Our home and our ability to stay in an area with excellent schools
5.  Two little boys whose faces lights up whenever I walk into a room- there is no better feeling in the world
6.  My parents and John's mom- their support has been so appreciated.
7.  Melatonin- enough said
8.  I am beyond grateful that my boys were born to me- this journey, while difficult, has made me a much different, and frankly better person.
9.  My ability to do laundry during work hours
10.  Good friends, both old and new
11.  Hope and healing- without these I would still be stuck down in the well that was my life last year
12. well this is a no-brainer.....COFFEE!!!!!!

The most awesome part of this exercise is that this year I could just keep going and going.....for every hardship I have had I have experienced a blessing, met an amazing new person, learned an important truth, gained new perspective.  And today I made it through another meeting.  Made it through.  Phew.

Unspoken Words

 

Nathan and I have an amazing bond.  Of course Jack and I do too, but with Nate it's different.  I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself.  Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted.  No, we're not in that place anymore, but we certainly lived there for a very long time.  And the language Nate has now remains limited, and his use of it does as well.  So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it.  There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can.  And Nate is well aware of that.  He comes to me whenever possible, and then to daddy.  It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents.  What a huge responsibility this is.  On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively.  This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game.  I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job.  And it is the most difficult of the three by far.

As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come.  Until it happens.  For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy).  Then she clapped her hand over her mouth.  I just smiled and said that's completely true.  Hey, I watched it with Jack, and Nate.  I know what she's talking about.  I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off.  She said this is extremely common in children with autism.  For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!".  Guess what I spent this weekend working on with him?  And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go".  He needs that incentive.  Every single word we gain needs a similar motivator.  And the consistency has to be well, consistent. 

I am learning many new techniques in the seminar.  And working my tail off on applying them in daily life.  Really it feels like creative cruelty, or professional withholding.  Poor Nate.  But some of it is working.  Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?"  If it's cup or pops, we're golden.  Anything else, we're screwed.  The closest we get to a name is "and that, and that, and that".  Which is a huge improvement, but helpful? Not really.  If it's pretzels, I hold them out of his reach and wait, and wait.  Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great.  If not, then I say the full word.  The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever.  I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy.  Another technique is working on "choices".  He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants.  The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step.  He is doing pretty well with this.  Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock.  It's not like he's torn. 

I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc.  One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height.  So if I say "time to go night night" and he screams, I say "no night night mommy!"  Help him express himself with words, and also let him know that I understand.  I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step. 

Tomorrow is Nate's first "big boy" IEP meeting.  Blah.  We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked.  Good thing.  Of course, as always, reading this crap was really comforting- yeah right.  They put my boy's receptive language in the first percentile and his expressive language in the second percentile.  They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language.  At all.  They put him at 11 months last September, and that is what the Child Find evaluator put him at last month.  I call BULL _ _ _ _!!!!!!  Either he had a bad day when they observed him in class, or they "over" evaluated him the first time.  Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor.  Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand.  And this is true in every aspect of daily life.  He knows and understands SO MUCH MORE than he did at this time last year.  So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation.  Because we know our son better than they do.  And they are going to put the worst case scenario in writing in order to get him the best services available.  And that's what I want for him.  So I guess I just have to take it.  And keep working, and working and working. 

Welcome to Reality AAP- We're Happy to See You!!!

I have never posted a full article on my blog before, but I didn't want to risk that you wouldn't follow the link, this is too important.  I have spoken before about how difficult it was to find a physician who would acknowledge the underlying physical issues that contribute to autism.  The first developmental pediatrician we saw with Jack discouraged the use of special diets, stating there was no evidence that they worked.  I have seen many people roll their eyes at all of the interventions we have attempted with the boys as if they are "hocus pocus".  The relative who I spoke with who has 4 children on the spectrum was dealing with this issue back in the late 80's and early 90's, when all of this was considered "nutty".  She worked closely with Dr. Buie, who is referenced in this article, to help her sons, and she was successful.  Luckily for our children, the anectdotal evidence has been enough to motivate us to fight for these interventions for our children.  My hope is that as further research is done, and further acknowledgment of these problems is obtained, full insurance coverage will be available to families who have literally been going bankrupt to help their children because autism is not a "physical condition".  Way to go AAP!!! Big step in the right direction....

Gut-Brain Connection? Leaky Gut? No longer “Crazy Talk” says AAP

November 8, 2012

tags: AAP, American Academy of Pediatrics, Autism, autism is treatable, Dr Bob Sears, Gastrointestinal autism

By Dr. Bob Sears, Pediatrician and TACA Physician Advisory Member

The American Academy of Pediatrics (AAP) has just taken a giant leap toward recognizing the association between gastrointestinal problems and Autism Spectrum Disorders (ASD.) The November 2012 issue of their journal, Pediatrics, has a 200-page supplement entitled Improving Health Care for Children and Youth With Autism and Other Neurodevelopmental Disorders (Note: this guide was not currently available online.) As I perused the various articles to see what the AAP was up to, one particular gem caught my eye: Gastrointestinal (GI) Conditions in Children With Autism Spectrum Disorder: Developing a Research Agenda. Curiously optimistic, I decided to pause the Saturday-afternoon college football game and read the article. After a mere three sentences, my jaw dropped. “Many individuals with ASDs have symptoms of associated medical conditions, including seizures, sleep problems, metabolic conditions, and gastrointestinal disorders (the italics are mine), which have significant health, developmental, social, and educational impacts.” A few lines later I found there is a “lack of recognition by clinicians that certain behavioral manifestations in children with ASDs are indicators of GI problems (eg, pain, discomfort, or nausea).”
My first thought was that someone from ARI or MAPS had snuck into the AAP and switched a few words in the article before it went to press, and no one had noticed. But as I read the entire piece, I was shocked to see other crazy ideas such as:

• “Clinical practice and research to date indicate the important role of GI conditions in ASDs and their impact on children as well as their parents and clinicians.”
• “Gut-brain connection, immune function, and genome-microbiome interaction.” Yes, it actually said gut-brain connection!
• “Increasingly, evidence supports a combination of changes in gut microflora, intestinal permeability (intestinal what?), inappropriate immune response, activation of specific metabolic pathways, and behavioral changes.”
• “Endoscopic analyses of children with ASD and GI symptoms have revealed the presence of a subtle, diffuse inflammation of the intestinal tract.”
• “Autoimmune responses in children with ASDs and a familial history of autoimmunity have been reported.”
• “Autoantibodies could indicate the presence of inflammatory processes and/or an autoimmune component that could affect the integrity of the mucosal barrier and contribute to decreased mucosal barrier integrity.”
• “Leaky gut.” Yes! It actually used those two foreign words that have been scoffed at for so long, and explains the research supporting this theory so that we general pediatricians can understand and begin to believe it.
• “Nutritional status and nutrient intake are inextricably related in children with autism.”
• A table on “Biomarkers as potential outcome measures” includes testing for: intestinal permeability to assess leaky gut, calprotectin for intestinal inflammation, celiac disease serology tests to assess gluten sensitivity, food allergy panels (not sure what for . . . maybe food allergies play some sort of role in all this?), organic acid testing for B12 or folate deficiency, and analysis of gut microbiota.

The article ends with a discussion on the lack of accepted treatments for GI problems specific to children with ASD and outlines six key research objectives:

1. Determine the pathology of GI conditions in ASD.
2. Increase animal research in this area.
3. Identify biomarkers to guide treatment.
4. Better evaluate nutritional status.
5. Identify behavioral phenotypes related to poor nutritional status.
6. Develop evidence-based algorithms to help guide clinicians in the evaluation and treatment of GI problems in ASD.

By the time I finished reading, the cynical frame of mind with which I usually read mainstream articles about autism treatment was replaced with optimism. Finally, mainstream research is planning to look at the gastrointestinal and nutritional aspects of biomedical treatment for autism. For twenty years or more, biomedical physicians have been treating GI problems in autism without much support from thorough mainstream research, and we’ve endured much criticism for doing so. Even worse, parents of children with autism have been begging pediatricians for help, will little acknowledgement that there is any possibility of a gut-brain connection in autism. The tide began to turn in January 2010 with Dr. Tim Buie’s consensus report on GI problems in autism (Pediatrics. 2010;125(suppl 1):S1-S18). And now the tide is actually surging in our favor.
This article doesn’t actually support any particular treatments for GI problems in autism, and we are many years away from mainstream medical research coming to fruition in this area. But it is nice to know that mainstream help is on the way, and that if any doctor tries to ridicule parents for asking for help with their child’s GI problems, you now have the AAP on your side. You can waive this article in the doctor’s face. We pediatricians love that. But seriously, the full text of this article will likely become available online soon. You can view the first part of it here: http://pediatrics.aappublications.org/content/130/Supplement_2/S160.extract?cited-by=yes&legid=pediatrics;130/Supplement_2/S160 . If you have an open-minded pediatrician, and need help, hand he or she this article, and you may be able to get your doctor to test and treat some of your child’s GI problems.
As a side note, this same edition of the journal has an article on the importance of evaluating and treating constipation in ASDs. Definitely a good read for your pediatrician if your child struggles with this, and it even suggests testing such kids for thyroid disease, lead overload, and, get this . . . celiac disease! Here’s a link: http://pediatrics.aappublications.org/content/130/Supplement_2/S98.abstract
Thank you AAP!!!
Dr. Bob Sears
Pediatrician and TACA Medical Advisory
Pediatrician and author of The Autism Book: What Every Parent Need to Know About Early Detection, Treatment, Recovery, and Prevention and The Vaccine Book.

Difficult Goodbyes

I suck at goodbyes.  Ask the people I used to work with at Hopkins- I left, and then I came back!  Granted, now I've been gone for about 6 years, but still.  When people enter your life who have an impact on your well-being, it's hard to let go of that bond.  That comfort is huge, especially when life is throwing you curveballs faster than you can duck.  Want to multiple that feeling times a million?  Try saying goodbye to people who have had a tremendous impact on the well-being of your CHILD.  OK, tears are coming already.

Nate is leaving his ABA program in less that 2 weeks.  It's not like he won't continue to get help, he's just moving on to the program for 3 year olds.  But the people that have been working with him this past year have been a complete godsend.  Those first few months of sending him to school daily, of coming to grips with his developmental issues, were, as you by now know, excrutiating.  The support offered by Nate's teacher, his case worker, the aides, the speech pathologist, and the therapist who has come to our home made such a huge difference.  For Nate, and selfishly, for me as well.  When people work around particular cirmcumstances for awhile, they sometimes become numb to the impact that a new diagnosis can have on a family.  I never got that from these professionals.  They were so patient, so enthusiastic, and so empathetic to the frustrations and fear our family was facing.  They were sensitive to how we may be feeling about his lack of progress- writing things on his reports in the slots where it said vocalizes songs like "not yet!".  To a parent who is fearful of reading these reports every single day, that means something. 

Tomorrow is Nate's last home visit with Miss Kristen.  I know that he will become involved with the new instructors, and that in a few months this won't matter so much for him.  But it will for me.  I will always remember these amazing women who guided me through this first year of intervention with Nathan.  I keep joking with Kristen that I would be happy to slip her some cash if she would be willing to keep visiting Nate.  She giggles, but I know that I am not the first parent who has said something like this to her.  I am thankful for all of the help we have received with Nate.  I am thankful that this program exists.  I will miss these people greatly.  Damn I hate change!!!!

Just Keep Swimming

What a crazy busy couple of days this has been.  After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days.  But as always, I muddled through.  Not that the week is over, but the worst is.  Sometimes I feel like Dory from Finding Nemo- Just keep swimming...  At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me.  I wanted to recognize and celebrate our little family and our survival after the past year.  We even did some shots of just John and me, first time we've done that since our wedding.  That part was really nice.  Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy.  It was breezy, and Nate even cried when we put him on the swings.  The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast.  Seriously, I am sore today.  Our photographer Heather is amazing and I am sure she managed to get some good stuff. 

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty.  That wind must've hurt so much!  Poor buddy.  We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed.  I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch.  I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child.  Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum.  He went through all the lab results, there were several interesting things.  They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem".  There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause.  He did prescribe a form of folic acid that is further broken down- leucovorin.  Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies.  It basically guards their bodies from harmful effects of the chemo.  That is where this drug is catalogged in my mind.  Time to reframe.  So that was one of the MANY changes he made to the boys' regimens.  More labwork, including urine.  He increased Nate's dose of methyl-B12, asked me to try it with Jack as well.  I am worried sick about giving Jack injections, but it is what it is.  We can do just about anything we put our minds to as a family.  He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione.  Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet.  This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols.  Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines.  Jack's favorite foods. Awesome.  Not feeling the motivation on the elimination of fruits.  Sigh.  Jack's hair samples came back with high levels of mercury.  One of the urine tests should confirm this.  This was the opposite of what I was expecting- thought it would be Nate, if only one of them.  Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him.  Further investigation of this is needed. 

After that appointment, I went home and put in a half day of work.  Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting.  Then last night, the shit hit the fan.  Both boys were up off and on all night.  Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming.  I resolved last night that I was going to let him cry it out.  It usually takes 1 or 2 nights to get him back into his usual pattern.  Last night Nate had other plans.  After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming.  Then I heard the usual thuds of him throwing everything out of the crib.  Then I heard a really big thud and a scream.  And Nate was out of his crib.  CRAP.  Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will.  And as I watched him I realized- I. am. completely. screwed.  I have no idea how I am going to keep my sweet baby in a bed.  We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept.  However, safety first.  So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it.  We were hoping to eek out another few months of him being our "baby".  It's all so bittersweet. 

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor.  A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna.  Does this really mean I don't have a baby anymore?  That just breaks my heart....

The good news is that this is what happened this evening since he didn't sleep last night....

The bad news is that I have no idea how long this will last, so I'd better hit the hay sooner rather than later.

Isn't he the most precious thing?  Sometimes I wish he could stay little forever...