Saturday, 5 May 2012


Today is a very special birthday!  Jack is 5!!!  A biggie for sure.  We kept it low key over here this year.  For the first time, I didn't do a true "party".  We just did cake, lollipops and a craft at our play group (and invited Jack's grandparents).  We ended up with about 20 kids here, but it was a very laid back atmosphere, which was great for Mr. Jack.  He barely even cried at the birthday song this year....just covered his ears for a minute.  Of course no one knew that while he was sitting on my knee I was singing booda booda booda in his ear and I don't think he really even heard the song.....either way, it worked like a charm.  I think he had a great time.  He has been telling me he is tired all day today if that's any indication.  The decorations this year were of course lobster and crab themed.  I have always  made Jack a cake (except his third birthday when I had a 4 month old), but this year I cried uncle with the whole gluten/dairy free thing.  I was not up for making some crazy shaped cake working with a different "medium".  So we got cupcakes from our local gluten free bakery, and a little cake for the family for today.

Let me tell you, if you are going to have a kid with Asperger's, you want to have a Jack.  His "quirks" are most often positives, and the stereotypical behaviors that people on this end of the spectrum usually possess are frankly adorable with him (well, most of the time).  For instance, people with Aspergers are notorious for memorizing long quotations and reciting them at random.  Jack has for the most part already figured out how to work them into conversations appropriately.  So often we are standing talking to someone and they have no clue he is doing it, and I find myself going, "and there's Curious George again".  I am trying not to say it out loud, he doesn't need his cover blown :).  One of Jack's favorite activities is watching videos on You Tube about his areas of interest.  Below, I have posted a video of him reciting the beginning of a Julia Child cooking show about lobsters, complete with theme music.  A great way to remember his 5th birthday.  The boy is hilarious.

I wanted to do something to make him feel like a big boy today, he was so excited to wake up 5 this morning.  He ran into our room and said "am I really 5???".  So I decided to take him to a movie.  We went to see The Lorax, which was totally adorable by the way.  He did pretty well....made me giggle though because I still have to hold his seat down in the theater, something my mom still laughs about from my childhood.  In my case though I think she was still doing it when I was seven.   It worked out well and he sat for the whole thing.  It was a nice "date" with my big boy.  Every year, I count down the minutes until 9:52 am, when he was born.  His birth is always at the forefront of my mind on his day.  I used to yawn and feel like, "here we go again", when my mom would start talking about thinking she was going into labor with me one day and begging God to give her a little more time because she had so much laundry to do (he gave her 24 hours).  This was always the beginning of my birth story, which she talked about every year on my birthday.  I so get it now.  I NEED to relive Jack's birth every year.  It was clearly a huge right of passage (no pun intended) for him, but it certainly was for me, and our family too.  It was the moment when his father and I were truly and permanently joined for the rest of our lives.  Yes, marriage does this on paper, and in our hearts, but a child....we are both a part of him....our families literally joined with his birth.  This family is matter what.  A birth in a family has so much meaning.  (OK, bear with me, we are watching The Lion King right now, lol).  Our family is far from perfect.... I feel like I still have parenting training wheels, and frankly, marital ones too.  Oh hell, let's face it, I feel like that kid hobbling around with one training wheel for years because she just can't quite balance everything.  Sometimes I think I focus on that lopsided feeling a bit too much.....I forget that no matter how awkward it feels, I still manage to get where I'm going....
Anyway, I saw this the other day, and I think it is a good reminder for all of us. 

On a completely different (but happy) note, there is good news about Nathan.  We are officially going to Kennedy Krieger on May 18th for bloodwork and a full developmental assessment!!  Whoohoo!  Take THAT establishment!  He has qualified for a study on regressive autism that looks for signs of oxidative stress, which is being researched as a cause/contributing factor.  I have spoken with at least 4 other research recruiters so far, and two other studies that he qualifies for are not quite yet in the recruitment phase, so they will call me when they are "ready".  He is also going to be evaluated for an interventional study on the 18th that would involve either 2 hours of therapy through the facility 4 days a week or parent run interventions (after training of course).  How Houdini mommy would get her son all the way up to Greenspring Station 4 days a week remains to be by day right?  In any case, I am very excited, it's another step on our journey.  Also, in regards to my comments the other day that Nate seems "better" (more alert, more verbal) on antibiotics, I have been reading this book called "The Autism Revolution:  Whole-Body Strategies for Making Life All It Can Be", and wouldn't you know, the author references the fact that many parents have reported substantial improvement in their children's behavior/speech with antibiotics, with fever, and also with prednisone.  Of course, none of these methods could actually be used as "treatment" for autism, but the author points out that it does suggest that autism is more of a "state" than a "trait".  In other words, not hard-wired into the brain, and  possibly changeable.  There are stories of children that are severely autistic getting a fever and literally singing a song when they have previously been close to nonverbal.  And when the fever goes away, so does the progress.  CRAZY.  And encouraging to say the least.  The more I read about autism, the more amazed I am at the complexity.  Not only of the range of function among different people, but the range of "causes" and treatments.  What a tangled web to try and navigate. I mean, I read the other day that curcumin (aka turmeric) has shown significant anti-inflammatory powers and is being studied as treatment for autism, cancer, and Alzheimer's disease!   I guess the most important thing is to record everything we are doing.  Thank you blog!

I posted a picture of my early mother's day gift below.  I saw this website and just loved what these two ladies do.  Beautiful autism awareness jewelry that is not "in your face", and is also personalized for my children.  Their website is:

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