Grief, Hope, and Some Really Cool IPhone Apps

OK- how, you ask, can this post be cohesive with such varying topics?  I doubt that I will be- sorry about that.  I am a bit scattered right now.  I have been in crazy organization mode this week- putting together a really strict budget and just trying to get on top of things in general.  I know there are iphone apps for almost everything, but haven't really taken the time to explore very much- can't imagine why, with so much time on my hands.  I'm just gonna throw the ones out there that really impressed me this week-
Cozi- family organization- family calendar, can send automated texts to the hubs to remind him of appts, grocery list, to do list
Allrecipes- has a recipe spinner- you plug in what type of dish (ie main course), main ingredient, and prep time and it throws ideas at you- and compiles a grocery list of the items needed to make them
Goby- lists local events based criteria like date, family friendly, etc, and moves with you- ie, if you change location it senses that and gives you the events for your current location
ShopSavvy- this might be my favorite- it's a barcode scanner- you can scan any item you want to buy and it runs it through the system and tells you what local store or internet seller has the best deal.  you can also type items in, but why would you when scanning is so much stinking fun?

Then I decided to type in autism.  It's a well known fact that there are a ton of apps that are helpful to children with autism- the ipad is a coveted item among most parents who have children with autism.  The iphone is a bit tougher since the screen is small and most of these kids have fine motor issues, but I did find a couple that I will be trying:
Autism Lite- this is for parents- it helps you track supplements, diet, behaviors such as meltdowns, self stimming behavior, sleep, etc.  of course for the full monty you have to pay- the jury is out on that
Autism iHelp- basically ABA cards on the iphone screen- practical objects and such that you can go through with your child where ever you are- you can also opt for a voice over to say the words to the child
AutismApps-  this is hilarious, but helpful.  It's an iphone app outlining all of the autism iphone apps.  but seriously, it reviews them, categorizes them, etc.  very helpful

So as John would say, stand back!  I am on one of my organizational rampages.  Everything will be slow-cooked, coupons will be clipped, comparison shopping will be constant, and lists will be everywhere.  I usually get like this when I am super busy.  There are an overwhelming amount of appointments, etc coming up for the boys.  If I don't get a bit more efficient I will be drowning in a sea of gluten free fish sticks and dirty laundry.  Not that there's anything wrong with that.

Speaking of busy- today was Nate and my first "More Than Words" class.  It was really an orientation for the parents- the kids will, for certain classes, be in childcare with some of the aids that work with them in ABA.  So it wasn't quite as bonding for him and I as I had hoped- but it will be in the future.  I realized while I was there today that I felt a tremendous sense of relief.  At first I couldn't pinpoint the reason for it- was it because I was among other "autism parents"?  No, I go to my TACA meetings, talk to other parents at the boys' OT, etc.  Was it because I am hoping this will really help Nate?  Honestly, no, although I am very optimistic about this.  Then it hit me- these are allparents that are at the same stage of this journey as I am.  Even at TACA, most of the parents have older kids, they are wiser, when I talk to them I feel like I am "behind" or "naive" about the interventions.  Not that they are condescending, they are not at all.  It's just how I feel.  I guess the best example I can give for parents of neurotypical kids is what I experienced when I joined playgroup with Jack.  I went to the organizational meeting and listened as the leader divided the kids in Jack's age group between two groups- first time moms and moms with other children.  At first I was kind of insulted- why was that necessary?  I so get it now.  Now that I have two kids- finding a time to meet would be so much more complicated, playgroup would be an "extra" activity, as opposed to the absolute lifeline it was to me when Jack was a baby.  With our first kids, we all freaked about everything, now we are like, oh reflux, really?  Colic, really?  moving on....If I had been in the playgroup with the second time moms I would have felt overwhelmed and afraid to speak up.  And that's how I feel at TACA quite often. 

If anything, I have been dealing with this longer than most of the parents in this group, because of Jack.  I felt relief because I could see my hope, frustration and grief mirrored in the faces of these other parents.  One of the moms cried multiple times today, just during the introduction.   At first, I felt pretty in control of my emotions, and then they put on a video of testimonials by other parents who have been through the program.   They made sure to include children with varying degrees of autism- several who were verbal, a few who were non-verbal.  I was struck by some of the footage of the parents talking about how grief-stricken they were when their children were diagnosed.  I wanted to scream "yess!!!!!" Thank God they included this.  We ALL needed to hear it, to know that it's normal.  So many friends and family members try to comfort us- but unfortunately, many of the things they say end up making us feel worse, or guilty, or minimize what we are going through.  Things like "it's not fatal".   Ummm, yes, I know that.  I am not worried about my child dying, and I am so so lucky for that.  However, I am worried about his life- what kind of life he will be capable of living.  And that is a very real fear.  I have had people say things like "someone has to work at McDonalds", or "he'll find a skill".  This is NOT comforting.  What parent doesn't want their child to thrive?  Anyway, I digress.  I don't think there were any dry eyes when the video was over.  I have a feeling that this class is going to take on a support group atmosphere as the the parents get to know each other.  This thrills me.  Next week we will be videotaped interacting with our children individually- kind a "pre-course baseline".  They will do this multiple times throughout the course, presumably to show progress.  I am ready to get moving on this- it is quite time consuming, there is extensive "homework", both reading and specific activities with Nate.  Thus the need for extreme organization.  There- see, I tied it together for you, haha.

Moving on- Nate has continued to have a very good week.  He is pointing more purposefully, he has been more verbal.  At one point this week he started saying "hug" and then running into my arms.  Bliss.  But besides expressing himself more, I get the sense that he is understanding more of what we are saying.  "ready to go bye bye?"  He heads for the door.  And, as insulting as it is to the sitter, the minute he sees her, he now bursts into tears. We got back from class today, and when he saw that she was still there he lost it.  It took both of us several minutes to convince him that mommy was staying.  Then he was fine.  We have been reading the "duck and goose" books at bedtime.  He will now point to the "duck" on every page when I say "touch duck".  Now, I am not picky, he can point to either the duck or the goose, and that counts for me.  On one page there are three birds- now when I ask him to touch duck, he individually points to each one of them.  This is huge for him, and shows that he is not doing it randomly- he understands what I am asking.  John and I both feel that major progress is being made- I started him on some digestive enzymes this week too, hoping this will be helpful.  Keep praying for him!!!

Sorry this was kind of all over the place, but it kind of matches my mood this week.  Have a good night and thanks for listening!

Hopkins Wants to Test My Kid's Immune Reaction to Mercury??

So yesterday I received yet another packet in the mail for the SEED study.  I am telling you, these people are thorough.  So thorough that even I think they are thorough, which is really saying something.  We scheduled our clinic visit yesterday, which will take place on October 30th and is expected to last 8 hours for John, Nate, and I.  I also dropped my 30 pages of questions in the mail this morning- phew.  Seriously I learned things about myself filling that sucker out.  Anyway, in the new packet was a discreet manilla folder that contained information on an ancillary study to the SEED study.  This is pretty common, smaller studies are often "tacked on" to larger ones in order to reach a larger population.  Usually it involves something like an extra vial of blood, or an extra assessment, something like that.  This one was labeled "Information Packet for SEED II ancillary study:  Genetic susceptibility for mercury-induced Immune Dysfunction".  Hmmmm......I say hmmmmm.  Wasn't it just a few years ago that Mark Geier was being ridiculed for his "false" study about thimersol (a component of mercury) in vaccines causing autism?

http://en.wikipedia.org/wiki/Mark_Geier

So I jumped on my friend Google to see what the latest word on mercury in vaccines is.  Here is one article I found.

http://www.naturalnews.com/035787_vaccines_autism_monkeys.html

Following this entry, of course there were about a thousand links saying that vaccines are perfectly safe.  I am not here to give my opinion at this moment- I cannot say for certain whether vaccines are a culprit.  My personal research study was conducted unwillingly and only had 2 subjects.  One of them received a hepatitis B vaccine on day 2 of life and cried for nearly 48 hours straight afterwards.  He has Asperger's.  The other was developing perfectly normally until 15 months of age, at which point he received a round of vaccines and regressed, then another round at 18 months of age, and regressed even further.  He has autism.  This is just my observation of my children as a mother.  And this could have nothing to do with it (do I believe that? nope).  There are so many different factors at play.  I have come to believe that it is a combination of genetics and environment.  Which is basically what this study is testing right?  Genetic susceptibility.  I am on board for that!  Why else would vaccines and other toxins effect some children so greatly and others not at all?  Here is a little information on the study:

Genetic Susceptibility to Mercury-Induced Immune Dysfunction in Autism & ASD

Summary

Principal Investigator: Ellen K Silbergeld

Affiliation: Johns Hopkins Bloomberg School of Public Health

Country: USA

Abstract: DESCRIPTION (provided by investigator): The overall goal of this research is to test the hypothesis that there are differences in response to the immunotoxic effects of mercury compounds in humans, and that susceptibility determinants are enriched in families with cases of autism/autism spectrum disorders (ASD). This research is relevant to understanding preventable risk factors for autism/ASD, based upon the hypothesis that mercury compounds by themselves do not cause autism/ASD but may contribute to the risks of autism/ASD through their immunotoxic properties, in combination with genetic susceptibility and co-exposures to other risks, such as infections. Based upon extensive findings of genetically determined susceptibility to mercury immunotoxicity in rats and mice, we hypothesize that there is a range of susceptibility for mercury-induced immunotoxicity in human populations. We specifically hypothesize, based upon the experimental literature by us and others, that individuals within families with multiple cases of autism/ASD, will have heightened responsiveness to the immunotoxic effects of mercury compounds. The eventual goal of this research is to identify candidate genes that influence individual responsiveness to the immunotoxic effects of mercury compounds. In order to accomplish this goal there is a primary need to define the phenotype of mercury-induced immunotoxicity, which is the goal of this project. We will test in vitro responsiveness to mercury in PBMCs obtained from volunteers. Responses will be measured by FACS analysis of cell surface markers and by ELISA measurements of released cytokines. A dose-response curve will be carried out, in vitro, in order to determine the slope for each individual. Replicability will be assessed by repeat measures of the same individuals; method validation will be completed by analysis of a new set of individuals. The overall relevance of the in vitro system will first be tested by comparing PBMCs from men and women (cycling, in the luteal phase). In the second phase, we will test the hypothesis that patients with autism are more susceptible to mercury-induced immunotoxicity by comparing in vitro responses of PBMCs among family trios (autism cases plus parents) with unrelated controls. Accomplishing the goals of this project will be the first stage in developing a broader study of gene-environment interactions in autism, as well as a targeted search for candidate genes related to mercury susceptibility in humans.

Funding Period: 2006-08-01 - 2010-07-31

more information: NIH RePORT

Top Publications

1. Mercury induces an unopposed inflammatory response in human peripheral blood mononuclear cells in vitro
   Renee M Gardner
   Department of Environmental Health Sciences, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland 21205, USA
   Environ Health Perspect 117:1932-8. 2009

So the Hopper wants to tackle this?  I say have at it!  But I damned well better get the results of that test!

New Directions

I had a very insightful conversation last night.  I spoke with one of John and my family members, who also has experience with having children with autism.  I won't go into more detail than that as I do not know if this person is comfortable with it, but needless to say, she also has multiple sons on the spectrum.  They are older than our kids and she was fighting this battle with half the resources I have, and did amazing things for those kids.  I have had her phone number for months, but for some reason I felt very hesitant to call- I am so glad that I did. 

Family commonalities.  In health conditions, in manifestations.  It is mind boggling to me.  And such a huge wealth of information.  I now have several new avenues to explore for the boys.  I am not saying that it is a guarantee that these will also be issues for my kids, but they are definitely areas that I should address, as this is the closest link we have had thus far.  So I will be looking for a gastroenterologist in this area, and I will be asking them to test for certain enzymes, and to look at the yeast/bacteria balance in the gut more carefully.  Asking them to take a closer look at Nate's immune system.  And hormone levels.  Say a prayer for us that some of these things pan out.  Thanks.

Comes the Dawn

Comes the Dawn by Joy Whitman

After awhile you learn the subtle difference between holding a hand and sharing a life
You learn that love doesn't mean possession, company doesn't mean security 

And loneliness is universal

You learn that kisses aren't contracts and presents aren't promises
And you begin to accept your defeats with your head up and your eyes open 

With the grace of a woman, not the grief of a child

You learn to build your hopes on today
As the future has a way of falling apart mid-flight
And tomorrow's ground can be too uncertain for plans
Yet each step taken in a new direction creates a path toward the promise of a brighter dawn.

You learn that even sunshine burns if you get too much
So you plant your own garden and nourish your own soul
Instead of waiting for someone to bring you flowers

You learn that love, true love always has joys and sorrows
Seems ever present, yet is never quite the same
Becoming more than love and less than love
So difficult to define

And you learn that through it all that you really can endure
That you really are strong, that you do have value
And you learn and grow, with every goodbye
You learn

I made it.....

Nothing A Manicure Can't Fix....

OK, so we know that yesterday was rough, right?  Right.  I have planned to go up to Pennsylvania to visit my little sister for the past few weeks- she bought a house about 2 months ago and I hadn't seen it yet.  And I really needed a break.  So after the boys' OT this morning, I headed up to check out her new digs.  She has been fixing it up in true Patton style- aka, ridiculously efficiently.  She has painted probably 3/4 of the house, including the kitchen cabinets, and it looks like she has been living there for way longer than she has.  She is doing a great job, and should be very proud of herself. 

My sisters have always been very special to me, we have a very strong bond in general.  When I posted about the aid that was rude to me at Nate's school the other day, they both responded on facebook pretty quickly with what they would like to do/say to her.  Love them.  By the way, off topic, thank you all so much for the supportive messages last night and today- it means the world to me to know that you are there for our family.  Anyhoo, Kate is 12 years younger than me, and was my dream come true.  I had begged my parents for a little sister for YEARS.  And I got so lucky with the one I got!  I may have spent many hours babysitting for her in high school, but she was the maid of honor in my wedding when she was only 16, and she was already an aunt to my older sister's son and daughter by then as well.  She has handled all of this with grace- in fact she planned my bridal shower in Baltimore from California.  How many 16 year olds can say that?  She stood up at the altar as a witness to our marriage, and promised to support us as a family in every way that she could.  She has kept that promise, even when it hasn't been easy.  She is Jack's godmother, and has been amazing to him- and to Nathan as well.  Can you tell I love her a little?

Kate knew that this was a difficult weekend for me.  Not just because of yesterday, but because of another difficult event that occurred a year ago as well- not going into that further, those of you who know me very well will say, oh gosh, yes, and for everyone else it's really inconsequential to the story other than to say that my sister was sensitive to what was on my mind.  I didn't realize what I was driving up to today, but it didn't take long for me to recognize that my little sister had every intention of taking care of me today, making me feel coddled. As she reminded me, yes I have done this for her plenty of times in the past, but I am the big sister- that is my job!  We went to lunch, we went for manicures- my first since my wedding I think?  We putzed around some shops, just looking at fun, mundane stuff and talking.  She made me laugh, she made me feel loved.  I hope I was at least able to do those same things for her.  The only blemish on the day was the fact that our older sister Sarah couldn't make it, but she does live in Indiana, so that's kind of a tall order.  I hope the three of us are all together soon- that needs to happen!  Thanks Kate, I really had a great day!

Screw It

Just thought you would all like to know that Nathan is eating PIZZA tonight.  It may be gluten and dairy free, but it is his first pizza since last October- and he has earned it!!!!  SO THERE!



Oh, and also, it has bacon on it!!! Take that!

It Never Gets Easier

Nope.  I woke up this morning, put on my big girl pants, and headed in to infants and toddlers.  I have been through enough of this in the past year, I can deal with this.  I know what to expect.  True, true, and true.  Doesn't matter.  It's my baby.  Lynne, his case worker, met me at the door with a hug (she is NOT a hugger) and a box of tissues.  These are both negative prognostic indicators.  She and I sat down, just the two of us, to go through his "progress".  I am going to give it to you straight- I will not make you wade through 20 pages of documents before you get the numbers.  When he was 21 months old, Nate's language comprehension was at 8 months of age, his expression was at 9 months of age.  He is now 33 months old.  His comprehension is 14-16 months, his expression is 11-12 months.  At least the comprehension is improved, but the fact that his speech has progressed by about 3 months in a year is just so, so, depressing.  And these two pieces of the puzzle being so severely delayed set him up to be delayed in every other area as well.  Such as gross and fine motor, he is testing at about 21 months.  Much of this is because he can't comprehend what he is supposed to do, or what the person is asking him to do.  I sat through all of these numbers with dry eyes.  I can do this, I can do this.  Then she asked me if I had any thoughts or comments.....I started talking, or trying, and out it came....sob, sob, sob.  It wasn't even just the assessment, it was being back in that room, with Lynne, thinking about how the team told me last year that I wouldn't even recognize Nate a year from then.  God I wish that were true.  Yes, he has made a little progress, but not nearly as much as anyone expected.  Especially in the language and social aspects.  Mommy guilt always kicks in with a vengeance at times like these- what am I doing wrong?  what am I missing?  Am I too lazy and that's why he's not improving?  She told me I am doing an amazing job, that I am a very motivated parent that is exploring all avenues for her child.  I wanted to punch a wall.  Why isn't all of this helping him more?  The diet, the supplements, the therapies, the one on one at home....why??????  Of course no one can answer that one.  After these check-ups I find myself vowing never to turn on the TV again- not for the kids, not for myself.  I vow to drill this child constantly, read to him, do anything developmentally appropriate that I can think of.  This, of course, is not practical- not for us, not for any family.  I just wish I knew what to do.

We discussed the next steps.  Turns out this fall is going to be really intense again.  He basically has to go through this full assessment process again in order to be placed for his 3 year old stint.  Because he will change agencies- from Infants and Toddlers to Child Find.  His class will be larger and longer, but to make up for this, a therapist will be visiting the home 1-2 times a week.  He will likely go to Benfield Elementary School, where they have an ECI program.  But first the assessment- then another IEP meeting. 

After the meeting concluded, all I wanted in the world was to see Nate.  It was about 9:20am, and his class isn't finished until 10:15.  Lynne snuck me into a back corner so that I could observe but Nate couldn't see me.  His teacher, Miss Gina, shuffled me to different hiding spots throughout the hour so that I could observe his drills, play, circle time, art time, and game time.  She went through his book of drills with me to show me his progress.  While all of this was wonderful, and the teacher was extremely accommodating, I feel like this observation period, at least today, was a mistake.  Because Nathan was by far the lowest functioning child in that class.  And one of the oldest.  I feel, once again, like I have been punched in the gut.  Most of the other kids have speech, they participate, they get "in trouble".  Nate just sat there- he followed directions, ie he went where he was told, but other than that it seemed like he just sat there in his own little world.  At one point I was talking to the teacher, and she commented that she knew how frustrating this must be for me.  She stated that she has a niece with autism, who is now 21.  That she has done very well with ABA- she can do simple tasks now, but nothing so complicated as going to the store and buying something.  This story did not make me feel better. 

In case you were wondering, bi*** aid was there today, but was not working with Nate.  I reported the incident from yesterday to Lynne, and was SUPER sweet to the little snot all morning- I prefer to kill with kindness. 

It is so hard to watch your baby struggle so much.  Every time I think about this morning I cry all over again.  Now, so that I don't lose it any further, I am going to force myself to make a list of positives:

1.  Lynne and Gina said that Nathan seems more "open" in the past month- that the fact that he is clapping on command is "huge"
2.  we have the assessment for the more than words program next Friday- maybe that program will help
3.  Nate is not being sent to the program for the 3's that are "severely" disabled, he is going to regular ECI (early childhood intervention) classes.  in and of itself, that is a positive
4.  much of Nathan's progress is not going to be captured by these formalized assessments- they way he responds when he sees someone he knows, the tenacity with which he now demands what he wants, the way he is pointing to the kitchen counter and saying "that" 15 times until I get it right.  there is no way to quantify that
5.  at the end of class today, I snuck out, and switched off with his aid.  She was holding his hand, and they were preparing to walk the kids out to the pick up line.  I just slipped my hand in his and said hello.  He looked up, looked down, looked up, realized it was me, did a little jumping and grinned like a little goof.  Then chattered to me the whole walk out and whole drive home.  When I had to leave him with the sitter he went ape.  He loves his mommy as much as she loves him. 

King For A Day...

 

 



I had an unexpected gift this morning.  I had planned on having a pretty blah day- in fact I had to go to "the office" this morning for the first time in 2 years. Yes, I know, wahhhh.  Poor, poor me.  But really, that means makeup and real clothes!  The sitter and I had to swap cars so that she could get the boys to school and I could make it into the office by 8.  I had to go in because my company is upgrading all of the computers, and per the notice I received, they needed a few hours to do it.  8 to 10 the schedule said.  So I took my computer (aka my livelihood) into the office and handed it over. I said, so about 10? He looked at me and laughed.  He said "maybe tomorrow".  OK, well, EVERYTHING  that I need to do my job is on my computer- even my phone. So guess who had a day off??

 

For a split second I thought of doing something for me, but what I really wanted was a day with my littlest boy. I never get to spend the day with just Natey.  So excited!  So I called the sitter and let her know about the change of plans- her son is visiting from California, so she was more than happy to have the time off.  And I went to pick Nate up from school.  Nate was so happy to see mommy.  When he walked out with his aid for the day he was super excited- the aid however mumbled under her breath "well there's a surprise, look who's here."  To her I say- listen woman, I may not drive my kid back and forth to school each day, but I am not sitting at home eating bonbons.  Financing all of the interventions needed for one special needs kid is expensive, forget two.  I am WORKING full time, and even so, only have daycare until 2pm.  I spend as much time as possible with Nate!  Just because YOU don't see me on a regular basis does not mean that I am not an involved parent.  She didn't even give me the usual "report" that the parents receive at the end of the day.  I wanted to kick her in the shins.  But I refused to let her ruin my day- so I just thought about how good kicking her in the shins would feel, and then I moved on.   

 

I didn't have any "big" plans for Nate and me, we went to Target, looked at toys, books, walked the aisles.  He was just chatting away.  Pointed to things all over the place. We called daddy and decided to go see him at the office, then go out to lunch.  This was a really big deal.  None of John's coworkers had seen Nathan since he was an infant.  And when we were going through the first 9 months of this autism journey, he really didn't tell anyone about what was going on.  This news is pretty recent for all of them- they are very supportive of us, but of course, they couldn't really know what Nate's level of functioning is, they just hadn't seen it.  It was very brave of John to be willing to share this with his coworkers, and it was certainly not something he would have been ready for a few months ago.  People hear that he is almost 3 and talk to him like that's his age.  And his comprehension and expression are nowhere near this level.  This was the first time that John really let people in his life see Nate and observe him in his own little world, stimming, humming, and all.  I made a concerted effort to let him explain Nate's behaviors to his coworkers- it was good for him and I wanted it to be his decision how much he disclosed.  I was very proud of him- he explained without saying too much, and maintained the pride that I know he has for Nate. I know this sounds like a given, but it can be tough to expose yourself to others' judgement, especially when it comes to your child, and even more so when your child has special needs. Everyone remained very supportive- John is lucky to have wonderful coworkers.  They make us both feel cared for.

After this, we headed over to Whole Foods for lunch.  I could get Nate food that he can eat there, and of course their prepared foods rock.  Nathan just basked in our attention.  I can't remember another time, other than when we have gone for evaluations, when just John, Nate, and I have been out together.  He had no competition for once.  He was so so happy.  And so were we.  He is such a beautiful, special little boy, and times like these are just precious.  Nate cried when we left, he never does that.  I'm glad that we could give him a mommy daddy day.  We all loved every second of it.  We dropped daddy off at work, and headed home.  Nate took a nap- and I of course ate bonbons. Oh wait that's right, I actually waded through 30 pages (this is NOT an exaggeration) of questionnaires that I am currently being asked to fill out for the SEED study at Hopkins. Let me tell you, I will be READY for that $50 gift card after this!!  We are getting closer to the 8 hour visit....that will be a big day.

 

Speaking of which, tomorrow is another big big day.  One year. Since the initial evaluation with Infants and Toddlers. One year since we confirmed we have two special needs children. One year of therapy.  And we are still kicking!  I get worked up for every single evaluation for Nathan.  It doesn't matter if he has made progress or not, they are still going to focus on his deficits. And that will always be hard to hear.  We will also start to discuss future plans- ie, where he will be "placed" once he turns 3.  This is also anxiety provoking.  Please say a little prayer for our family- not even for everything to go "well", but for things to go the way they are meant to be.  As always, we love our boys, and want whatever will be best for him.  And then, I want to eat bonbons.  I am, after all, a luxury girl.  

My First Guest Blogger!!!

I was approached by a blogger last week, asking if they could do a guest post on "The New Normal".  I was very flattered, after all, I only have about 100 followers, I am not great PR :-)  This woman, Heather, also apologized because the topic she wanted to discuss was not necessarily relevant to my autism blog.  Then she told me what her cause was- cancer (specifically mesothelioma).  Well, you came to the right place!  As an oncology nurse and the family member of several cancer survivors, I will NEVER say no to such a worthy cause!  This woman is amazing and very brave.  Without further ado....

The Words That Changed My Life

There are three words in life that no one ever wants to hear. Unfortunately, I heard those words when I was just 36 years old. My doctor walked in the room, looked at me, and said, "You have cancer."
These awful words came at a time of my life that was supposed to be filled with joy. My baby daughter was only 3 1/2 months old when I received my diagnosis. I wanted to be enjoying my daughter's growth and development, but I was fighting for my life instead.

I immediately began asking the doctor questions about my diagnosis, and I found out that I had malignant pleural mesothelioma. The doctor went on to explain that this mesothelioma is almost always caused by asbestos exposure. Every time I told this to someone, they say, "I thought asbestos was banned." The truth is, it’s not.

After my friends found out about the asbestos exposure, they wanted to know how I was exposed. It turns out that the asbestos was carried in to my childhood home every day on my father's work clothes. My hardworking dad spent many hours each day as a construction worker. He specialized in drywall cutting and sanding, and asbestos was present in that drywall. When I hugged him after work every day, I never could have imagined that I was pressing my face up against a very dangerous substance.
My face is not the face of the typical mesothelioma patient. Most patients are older males who have worked as tradesmen or laborers. The staff members at the Mayo Clinic said that they had only seen one other person as young as me who was suffering from malignant pleural mesothelioma.
However, the face of mesothelioma is changing. It is no longer just older males who are suffering. More and more women and young adults are receiving a mesothelioma diagnosis. Many people ask me why this is happening, and it is actually easy to explain. Who was washing each man's clothes after he came home from work each day? Who was constantly exposed to asbestos by clothing that was brought into their home? The answer to these questions is that it was the wives and children of the tradesmen.
You might think that my story is depressing, but there is hope behind all of this somber news. I have made many wonderful connections within the mesothelioma community. We share the common ground of a scary diagnosis, so we come together to support each other and hold on to hope.
I share my story as often as possible to bring awareness of mesothelioma to those who know little to nothing about the disease. I will continue to advocate for myself and others who had to hear the words "You have cancer." Together, we are determined to win the battle and spread hope to others.

To learn more about Heather, check out & “like” her new Facebook page dedicated to mesothelioma awareness & support! You can follow her journey: https://www.facebook.com/HeatherVonStJames?ref=hl

Aspergers and Fixations

I have frequently alluded to the fact that Jack is obsessed with airplanes.  But when I say this, I know that most of you cannot possibly understand the depth of this preoccupation.  Jack has done fairly well at keeping himself together the past 6 months or so.  In fact, I almost forgot just how intense he can get when it comes to his "area of interest".  Today, I remembered.

It all started innocently enough.  Jack was "helping" daddy paint some trim on the garage and back doors yesterday.  John grabbed a box out of the garage and told Jack to paint the box- fairly clever really.  However, Jack being Jack, painting the box was not enough.  He opened it.  He found the model of the BF-109 Messerschmitt that his dad had purchased several months ago- he put it aside for down the road, as it is for ages 10 and up, very delicate, complicated, and certainly not meant for someone Jack's age.  Jack went NUTS.  I was out at the time, but apparently John had Jack convinced that they could assemble it when he was 6 (yeah, that's next May).  A feeling of dread came over me- how long would that last?  And predictably, within the hour, Jack was asking John if he could drill a hole in the box so that he could see the propeller and bolt.  He asked this about 25 times between 4pm and 8pm.  And my anxiety was mounting.  I gave him melatonin, and he went to sleep.  I am a believer in melatonin solely for getting Jack to go to bed at night- in terms of helping him sleep through the night- not so much.  He didn't sleep through the night once this past week.  Last night, he woke up crying for the messerschmidt at 1am, 2am, 2:45am, 3:30am, and finally 4:40am.  At about 5:20, I finally took him downstairs.  And the meltdown began in earnest.  He wanted the box opened, I tried to explain over and over again that it was not really a plane inside.  Instead it was about 100 pieces, needed cement to be put together and did not even include the paint that was needed to make it look like it did on the box.  Of course this was beyond Jack's comprehension, and I can't blame him for that.  After about an hour of sobbing, I decided that the only thing I could do was take the box away.  I knew enough to expect an epic meltdown, but I had to weigh my options- one huge meltdown or an all day affair?  I chose A.  Turns out that both options sucked.

Jack hit the roof.  Climbing on things screaming, begging to have it back.  I decided to cut the picture out of the front of the box so he could hold it.  This has worked pretty well in the past when he is fixated on something- he has slept with many pictures in his bed over the years.  And it helped for about 20 minutes, then he was back at it again.  I decided to show him the contents of the box

It had no effect.  He wanted me to "fix" it.  There is no distracting or redirecting Jack when he works himself up to this point.  I remind myself over and over again that this is how his little brain is wired- that he is not being "bad", he is truly unable to refocus his attention.  But where do you draw the line?  Because his behavior does escalate, and his behavior becomes inappropriate.  I drew the line at him coming up to me, pinching me, and telling me I am a "bad mommy".  This was at 7am- about 2 hours into the fun.  Time out it was.  Jack has very high anxiety, and in the past I have found that putting him in time out and shutting the door does very little to help him understand that he did something wrong.  All he can think about is the fact that mommy left him alone, and he is trapped.  I certainly don't want him to feel like that.  So I leave the door open, sit in the doorway, and make him stay on his bed for the duration.  So at least he knows I am still there.  However, this takes away that whole parent getting a chance to regain their sanity piece of the puzzle.  In any case, he calmed down somewhat, and we tried downstairs again.    Unfortunately, the situation did not really improve.  The crying continued pretty much the whole morning.  He asked for "the plane" approximately every 2 to 3 minutes.  He yelled, he screamed.  After about 4 hours of this, 3 cups of coffee, and very little sleep, I found myself yelling back at him.  Oh crap.

I try so damned hard not to yell at Jack.  He is a tough kid, and the urge is strong at times, but I do my best to remain calm.  So when I found myself at this point I did what any self respecting mother would do when they are at the end of their rope.  I loaded the boys in the car and drove....and drove....and drove.  Across the bridge, almost to Delaware if I'm being honest.  Just to give you an idea of how tired Jack was, he fell asleep as we crossed the bridge, so after 20 minutes in the car.  I can count on both hands the number of times he has fallen asleep in the car in his life.  Not often.  Sadly, after a 20 minute nap, his picture of the plane slipped out of his hand, jarring him awake, and starting the crying fit all over again.  This continued for the whole drive.  I heard "I hate you" come out of my son's mouth for the first time today- that stings.  Being the exemplary parent that I am I turned up the music.  Mommy had to get some kind of break- especially since my eyelids were fluttering a little too frequently for my taste.

OK, so we made it until about 10:45- I called my parents.  They live on that side of the bridge, and "fresh" people would surely help right?  Ummmm....kind of.  We headed to their house, where Jack proceeded to tell them all about the plane.  My dad distracted him with his John Deere combine, and slyly hid the picture.  I could tell he thought he had solved the problem.  Ha, I say.  About 3 minutes later Jack was hysterical, looking everywhere for his plane.  There are times that I know my parents have thought I was exaggerating about Jack's obsessiveness.  He sleeps through the night at their house, is often distracted by the different toys, and of course my mom has the bird book.  I do not think they doubt me anymore!  He asked for that plane AT LEAST every 2 minutes the entire time we were there. About 2 hours.  At one point I looked at my mom and said "I just can't".  She said she couldn't even imagine how exhausted I must be, and I headed to the guest room for my own 5 minute time out.  I guess my parents decided to take the boys for a walk, because my dad came in to tell me that I should come sit in a chair in the family room while they were gone and found me curled up on the floor between their Murphy bed and a spare file cabinet.  He looked at me like I was on crack when I told him I was just fine where I was.  By the time I left, my dad was saying he was exhausted from Jack's antics today, and said he understood why I didn't feel the need to move earlier- too much energy would be exerted.  Let's just say that both of my parents hugged me extra tight before we left.

It was about 1:15.  The Ravens game was on.  John was undoubtedly entrenched in that- and Jack FREAKS when football is on in our house for some reason (although he didn't even notice it was on at granddad's).  I decided to drive around for a bit longer.  Nate was asleep within 5 minutes, as it was his nap time at this point anyway.  Jack fell asleep AGAIN before we reached the bridge.  We are talking exhausted here.  Victory!!!!  Only problem was that mommy needed serious coffee....but I knew better than to go through a drive thru.  That would wake Jack up immediately.  So I drove and drove some more.  After about 40 minutes it happened- I got stuck at a traffic light.  And Jack was off and running again.  He had dropped his picture and he went completely ballistic.  I repeatedly told him that I was not willing to get into an accident in order to pick up his picture and he would have to wait.  He was unable to listen to logic at this point though and just became more and more hysterical.  He woke Nate, who just stared at him like "what the f*** dude?".  We arrived home and Jack started back in on daddy.  I decided to take him up to his room and read with him for awhile- my last attempt at distraction.  He fell asleep AGAIN.  I guess crying all day is exhausting even for Jack.  He slept until 5pm.  I don't even want to think about what tonight is going to be like.  He hasn't napped in 3 years.  It could be ugly. 

exhibit A

He is still talking about it almost constantly, but he is at least calmer right now.  I walked away for awhile- for sanity.  It is painful to watch your child go through this- when Jack gets like this there is very little I can do for him.  His brain just cannot let go, cannot allow any other thoughts in.  It's disturbing to watch.  It has been so much better recently- but today was a blast from the past, and not a pleasant one.  Here's hoping that it was just a momentary blip. 

As always, a little info:

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm

http://www.myaspergerschild.com/2008/09/aspergers-obsessions.html

Jack Takes Flight

Yesterday at OT, Jack's therapist Miss Sam called me back to the therapy area.  Unlike other places, when mom gets called back at OT, it's pretty much always a good thing.  So my little boy, who used to cry if his swing at the park was slightly off center, was doing this....

Talk about your progress!!!!  Not only tolerating this crazy movement, but enjoying it.  AND his trunk strength is so much better. Way to go buddy!

A New Opportunity for Natey and Mommy

I got a handout in Nate's backpack today.  It's one I have received multiple times and chosen to ignore.  Why?  Because I didn't think that what they were offering was possible for us.  The county has made the investment of sending their infants and toddlers speech pathologists to be certified in the Hanen program.  And they offer it to the families of the children in their ABA program FOR FREE.  The program is called "More Than Words", and it was developed specifically for parents of children on the autism spectrum.  It involves 8 2 1/2 hour group sessions, a pre-program consultation, activities at home, and 3 videotaping sessions where the parent and child are taped while interacting, using the methods taught in the program.  The information in the program deals with improving communication skills. 

http://www.hanen.org/Hanen-Programs/Programs-For-Parents/More-Than-Words-Parent-Program.aspx

The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

The More Than Words Program focuses on your natural, day-to-day life with your child. You’ll learn how to tweak the activities that you’re doing with your child already and turn them into productive and enjoyable learning opportunities.
You’ll discover how to take everyday activities like meal time, story time and bath time and use them to help your child improve his communication and social skills.

Here is a little more information (you know how much I love to provide links :-) )

http://www.hanen.org/Helpful-Info/Research/More-Than-Words-Parent-Research.aspx

Know what this sounds like to me?  It sounds like the portion of the study at Kennedy Krieger that I wanted to participate in, but was not lucky enough to be randomized to.  It sounds like a program that even a month ago, I would have doubted would be beneficial to Nathan.  Because he wasn't "there" enough to participate, to focus.  He is, without question, there now.  The changes in Nathan have been consistent these past few weeks- we have continued and been increasing the speak smooth.  I took Nate to get Jack at the bus like usual today- our neighbors were delighted to see him pointing to the things around him and saying "and that, and that, and that".  He asked for more bread while we were there, and then more cup.  He continues to look at books almost constantly, and he is pointing to more and more things while we read them at night.  Last night he was pointing to the duck throughout one book we were reading.  And he is doing more things like clapping hands when I ask him to.  The jist of it is that he is much more responsive.  His OT said something this week, his sitter, his mimi, and of course daddy and me.  I feel the need to grab onto this change and run with it as fast and hard as I can.  So the handout came at the perfect time.

The obstacles.  Ahhh, yes, those.  The reasons I have never entertained participating in this program in the past.  It takes place on Fridays, about 40 minutes from our house, from 1pm-3:30pm.  For 8 weeks.  This is Nate's naptime, and he is supposed to attend with me.  But I listened to him shout and talk to himself for his whole naptime today.  He can miss his nap.  Done.  Jack- school.  He gets home at 3:50pm and there is no way I will be back in time to meet the bus.  Grammy is going to come meet him on Fridays (love you more than words mom).  Done.  And the biggie- my job.  Take a half day every Friday for 8 weeks?  No way!  Yes way.  My work partner (and dear friend) is completely supportive, I spoke with my supervisor today- supportive but wanting to check with the higher ups.  They said yes.  So.....DONE!  I am ecstatic!  I am so grateful that my company is willing to work with me on this- taking 4 days of vacation time to help my kid is nothing, right?  But Friday afternoons are a precious commodity in the business world.  I am so lucky.  It's not just the attending the program thing, although that is the biggest part of course.  It's getting this one on one time with Nate.  And gaining tools that I can use in our everyday life.  I'm really excited!  Our evaluation is on September 28th.  Our insurance constraints have been such that I have not put Nate in speech therapy.  When I asked his instructors and therapists from school, they felt that he would benefit more from OT at this point, so that is what we have done.  Now I have a way to give him speech too- and I get to be involved.  So psyched!!!! 

My Necklace

This necklace is very very special to me.  John gave it to me on our wedding day.  I wore it nearly every day for the first 6 years of our marriage.  Then disaster struck.  And it totally mirrored the state of our family.  Last November, around one of our lower points as a family, one of the boys grabbed it off of my dresser and threw it on the floor (apparently).  I was vacuuming and didn't notice it- you guessed it.  I heard that sickening sound of metal being ground against plastic.  It broke into 4 pieces.  At the time, all I could think was, see, broken- just like everything else (yeah, I was in a really good place back then).  I managed to find all the pieces, placed them in a zip lock baggie and put it aside.  Figured it was done for. 

Around Christmastime John asked me what I would like as a gift.  I told him I would like the necklace repaired.  I knew it was a long shot, but it really was very special, and I love it.  So he took it back to our jeweler, who consequently is the same person who sold John my engagement ring, and he said he would see what he could do.  John was able to go pick it up shortly before Christmas.  When he gave it back to me, he told me what the jeweler said.  He told John that he would fix it this one time, but that if it broke again, the damage would be irreparable.  You can see where I am going with this.

I went to put it on, and the chain was uneven, like pretty significantly.  I said very little to John about it, just put it away and counted myself lucky that it was intact at all.  About 2 months ago, I pulled it back out and put it on again.  Yes, it sits a little crookedly on my chest.  No, it's not as perfect as it was before.  But it is in one piece.  I wear it every time I am in something nicer than sweats again now.  I acknowledge the fact that it is slightly skewed, and I am proud of that.  It completely parallels our family life.  Slightly crooked, intact, and beautiful.  That is my deep thought for the day. 

About to Burst!!!

Oh my goodness!  I know I have been posting a bit more than usual, but man is there something to post about.  My Natey.  Something is cooking in that little brain of his, and I am not going to play it cool right now.  There has been a huge change in him this week.  He is attempting many new words- but it is not just that.  It is the way he is using them.  It is the fact that he is trying words like "more" in new ways- for instance, while playing with a toy today that he has to pull a string to make go, the toy stopped, he looked at it and said "more" and then pulled the string again.  He has never really used this outside the context of food before.  He is pointing, really pointing all over the place.  And even when he is not using words, he is muttering under his breath, babbling like crazy.  He had a home visit today, and Kristen was astounded at the difference.  We kept catching words...."I hide", "more work", "tada", those are just a few that I can think of.  It's one of those times when everyone just looks at each other like "did we really hear that?  did you hear it, because I heard it?"  I taped his drills again today- please watch them, and if you didn't see last month's, go back and watch those too.  http://jackandnatesmom.blogspot.com/2012/07/natey-aba-update.html Those took place on July 31st.  I think the most marked difference is his behavior during the drills, his interaction with those around him, and most importantly his attempts at vocalization.  But that's just me.  I am biased of course.  Don't forget, if you are receiving my posts via email, the videos might not show up, you may have to come to my actual blog to view them (mom).  They are worth it!

he says "tada" in this one

says "car" in this one

Watching Nate do his drills involves a lot of sitting on your hands.  I tell Kristen all the time that I have no idea how she holds herself back so well.  I would want to just grab the puzzle piece after awhile and plop it in.  Annie, the sitter, commented on this as well, that she feels like maybe sometimes she hasn't given Nate the length of time he needs to actually complete a task.  Because he really does take his time and methodically figure things out.  Also, today instead of sitting in his little chair and just waiting for the next activity, he dove straight into Miss Kristen's bin of fun to find something to do. And tried to run away from us multiple times.  You can also see him in the videos checking in with me multiple times, something he hasn't been doing very much of lately. 

Can you tell I'm giddy???  I just have this hopeful feeling that I haven't had in a long time.  I try to stay positive on here about the boys, but I have been so scared for Nate.  This gives me a big dose of the hope I have so desperately been needing.  Come on buddy, I am praying that it's time for you to climb a little further through the "window". 

Remembrance

May all of us remember with love and compassion this day.

May we grieve with those who still mourn,

And share memories with those who cannot forget.

May we draw strength from those who bravely responded,

And gave their lives to save others.

May we stand with strangers who became neighbours that day,

And remember their generosity and hospitality.

Above all God may we remember your faithfulness

And learn to trust in your unfailing love

-Christine Stine

"I Want More"

Excellent weekend!  I would probably say this no matter what just because of the weather, which is heavenly, but it was made extra special by a very alert, verbal Nathan.  As usual, John and I are trying not to get too excited- but we did just start him on the "speak smooth" this past week, so fingers crossed.  Today was an especially good day for him.  We went to our favorite haunt, the airport playground this morning, and Nate really enjoyed climbing all over the place.  He did his usual sitting on the ground and digging through the recycled tire ground cover for 20 minutes at a time thing, but he also played with daddy quite a bit.  Got a few good shots....

\

He conked out on the drive home at around 12:30 and slept until about 2:30, which is a pretty good nap for him.  He woke up ready to go and more alert than we have seen him in awhile.  He hadn't had lunch yet so I put him up in his seat.  He immediately started pointing around the room, saying "that" over and over again.  He hasn't pointed constructively in a really long time.  This made us feel a little giddy.  Then he said "more cup" and "more bread".  We are noticing some more 2 word phrases like this lately.  We have been the meanest parents on earth for quite awhile, refusing to get him "more" unless he says or at least indicates in some way exactly what he wants.  It seems to be paying off.  His Mimi came for a visit, and while we were sitting there talking, he kept saying "more" again and again.  Since he wasn't telling us what he wanted we were studiously ignoring him.  All of the sudden we hear "I want more!"  Thank God he said it in front of 3 adults, or we wouldn't believe it ourselves.  This was really really big for him.  Later he walked over to his school backpack, pulled on it and said "go bye bye".  Holy mother of moses!  

Here are a few more shots of him focused on his books....so sweet, and new for him....

John, Nate and I were hanging out in the kitchen while Jack and Mimi were playing and Nate started in with one of his favorite games with mommy.  It's kind of embarrassing, but he likes to smack my head to the side while I make this ridiculous noise and then laugh like a little maniac.  He also loves to shove his finger down my throat- not so funny to mommy.  PLEASE excuse my presence in the below video.  I just wanted you to see Natey having fun and really engaging.  I also wanted you to see how affectionate he can be.  I hear stories from other parents of children with autism about how disconnected they sometimes feel from their children- how they never get hugs, or eye contact, how they feel like their kids don't even notice when they're not there.  I don't know if I could live with that, honestly.  I am so so lucky that this boy is so loving.....

Melatonin, schmelatonin

Dag nam it!!!  My great white hope has been at least temporarily dashed!  I mentioned in a recent post that I finally broke down and ordered melatonin for Jack- it is a natural sleep aid that many parents I have spoken with use for their children on the spectrum- particularly kids with aspergers.  Those brilliant little minds just can't seem to shut down enough to sleep through the night.  And after 5 1/2 years of not sleeping through the night- John and I are well, tired.  And John is cranky.  I, of course, am completely charming at all times (right honey??? lol)  I figured that this weekend would be a great time to try it out, as Jack is already exhausted to begin with from his first week of full-day kindergarten.  Surely this combination would give us a really really good chance of a full night's sleep.

So I gave him a dropper full of melatonin at about 6:45 last night.  By about 7:20 his little eyelids were drooping, and John and I were practically salivating at the thought of him going to and staying in bed without a fight.  He passed out almost right away.  And Nathan being Nathan fell asleep while I was rocking him and singing (maybe it's a defense mechanism, haha).  So by 8:15 we were free!  Usually Jack is up and down at least 10 times before going to sleep, so this in and of itself was a pretty big victory.  We had a nice, quiet evening, went to bed, and then.....

3:15- moooooooommmmmmmm!!!!!  help, starscream's gun!  where did it go? where is it?  help, help help!!!  You see, here was my first mistake.  Yesterday afternoon, as a reward for being a good boy his first week of school I gave him a small transformer that becomes a plane.  I had to give it to him in the afternoon because of school, which is unfortunate because the first rule of giving a new toy (particularly one that relates to an obsession) to a kid with aspergers is that it must be given to them first thing in the morning.  It is the only way that they have the chance to calm down a little and be able to unwind enough to sleep by bedtime.  We have had many a sleepless night when Jack has been given a new plane, or robot.  We once gave him a ride-on airplane, right around the time Nate was born, as a big brother present.  I had to cut a picture of the plane off of the box and tape it on the wall next to his bed in order to get him to lie down.  And none of us slept a wink that night.  I kinda hoped we were past that.  Anyhoo, I found the gun- without my glasses on- it's approximately the size of my thumb, so that was pretty impressive.  I told him to stay in bed.  returned to our bed

3:45- thud!!!  mommy, daddy, my bed is too crowded!  I have to sleep with you!  OK, so the reasoning behind this excuse is a mystery to me. 1 twin bed to yourself, or a queen bed with 3 people....which has more space?  Right?  So I walked him back to bed, told him if he wanted to keep starscream he'd better stay put this time, and went back to our bed.

4:20- I can't be alone!!!! I'm so lonely!!!  Mooommmmyyyy come here!!  I need protection!!!  I sent John this time as I was not going to be so comforting at this point.  Plus, John often conks out while in there, and Jack follows suit, and then everyone sleeps.  No such luck.  John came back to bed after the requisite 10 minutes and the rest of this early morning hours were spent shuffling back and forth, trying to get Jack to stay in bed, and finally giving up at around 5:30. Then tolerating him lying between us and alternately kicking us in the face and shins depending on what position he had thrashed himself into at that point for about an hour.  Then- breakfast.

So I remain my same zombie self.  I fell asleep in the OT waiting area this morning, as usual.  We WILL try again tonight.  Pray for us.  and for Jack if he doesn't sleep.  Kidding.  kind of.