Natey- ABA Update

I am always talking about Nate's ABA and have even posted some pics, but his home therapist came today and I thought, why not take a little video, so I did.  You will see that the goals we are striving toward are really very simple, it doesn't make the fact that Nate touched his nose on command today mean ANY less though!  Love my little boy and I am very very proud of him

Here he is identifying a picture of a dog, even when moved to a different position.  this is kind of a prep for when they do multiple different pictures and have him point to the correct one.  

Simple imitation stacking of blocks....pretty self explanatory

Identifying pictures of people with a second picture used as a "distractor"

working on fitting puzzle pieces- this was not his norm, he usually does this pretty easily, and unfortunately my video limit was reached on my I-phone before he did it- but he did get it eventually!

BREATHE

It's coming....kindergarten!! Bah!  Tomorrow it will be August and mommy is turning into a bit of a basket case.  I get nervous every year when I send Jack to school, and he has been going since he was 2.  It's an adjustment for any kid to go to a new school, I certainly know all about that since I switched schools approximately every 2 years until I was about 12.  For Mr. Fury though, it is tougher for sure.  We have had the same conversation for at least the first few months of school each year.  I say "time to go to school!" and he screeches "time to go to home".  Then I say "be good for the teacher" and he says "no, be good for mommy!"  As my mother points out all the time, I certainly feel loved.  I am really glad we have such a strong bond.  However, mommy is ready for this transition.  It is SO time!!!

He has certain advantages after going to Pre-K in a public school, which I keep trying to remind myself of.  He is used to the "larger" school atmosphere, he has lots of practice with getting in line, having a sparser student to teacher ratio, etc.  But most of the kids in his Pre-K had some type of disadvantage, whether it was coming from a high risk background, having English as a second language, or some sort of developmental disability.  That will not be the case now, and I am terrified he is going to have difficulty fitting in.  We were at a birthday party for one of his playgroup buddies last Friday, and as usual, he went after the babies- wanted to touch their feet, talk baby talk to them, etc.  He barely even noticed the other kids his age, and had difficulty sitting during circle time (we were at Rolly Pollies).  Usually I say to myself, it's a big crowd, he's just not used to it.  With kindergarten approaching, however, I realize that he will be exposed to a chaotic environment much more frequently from now on.  And the self-direction that will be required scares me the most.  The transition from bus to school, going to lunch, preparing his juice box, opening his lunch box, opening food packages.  His fine motor skills are still significantly delayed, even though they are greatly improved.  Wonder if other kindergarten parents think about these same things?  I have been putting him through his own personal boot camp- and right now he is failing miserably.  Juice is everywhere and the straw is stuck in the drink (like all the way in), he can't get things open.  We still have 4 weeks and I have expressed my concerns to his OT, who is wonderful with him.  She has said she will help him practice.  I mean, will he be able to open his backpack?  It has a zipper....sheesh.

Speaking of his OT, she came out to talk to me while Jack was in session last weekend, as she has a student with her right now who was pretty much independently running the session at this point.  SHE got teary talking about Jack going to kindergarten- she has been working with him since he was 3, and they are SO bonded.  I still hear her talking about Jack as her favorite client behind the desk and it is known that if he needs a second appointment during the week, they are to match him with her if at all possible.  He does well with anyone at this point to be honest, but Miss Sam wants to work with him.  Love it.  She and I went through all of the possible challenges he will face in school and she had suggestions for most of them.  He still has a terrible time with fasteners- buttons, snaps, and zippers.  He just doesn't have the strength in his hands, although, once again, it is improving.  It has never been that much of an issue at school- this boy is skinny, and even when he has on regular jeans he can slip them on and off without unbuttoning.  I am worried about his coat- who is going to help him?  I know the teacher will try, but she has lots of 5 year olds to worry about.  So we need to work on that too.  Sam suggested I "brush" him before school each morning, as this seems to help "ground" him and leaves him better able to focus.  Sounds like a great idea, and MAYBE I can find the time....his school will be starting later, won't have to leave the house until after 8:30.  It's just that the mornings, like in most houses, are beserko at our house!  And while this is the case for most families, are you chasing your 2 year old around with a syringe???  Yeah, Nate is wise to his shots now and takes off the minute he sees me coming.  That boy is fast!  Between that, the special diets, and the supplements (which thanks for my friend Bridget I am now hiding in Nate's almond butter when I put it on his bread- thanks brilliant woman!!!), I am one busy lady in the am.  But if it's necessary, we will find a way.

I do have a few plans in place for Jack.  Our next-door neighbor has an 8 year old daughter who Jack likes very much, and she is going to "help" him on the bus and getting off the bus at school.  The special educator agreed that he should have a "lunch buddy" for awhile as well.  An older child to help with juice boxes, etc.  I just don't want him to stick out too much.  This is one of the first times that his social life is one of my biggest concerns.  I want him to make some real friends, not just kids that he plays "around".  This is a big expectation for a child with Aspergers.  We are lucky that there are some kids that he already knows who will be in his grade.  And he does, at times seem to notice other kids and want to interact with them.  He is certainly interactive at home- and he and Nate are acting more and more like siblings- as much as is possible without a lot of language anyway.  A lot of pushing, swatting on the sly, and chasing.  I love every second of it.  Not only is Jack interested in his brother, but Nathan is teaching him some social limits by screaming at him when he goes too far.  He has needed that for a long time.  He is actually starting to treat Nate like he is a person.  It's pretty cool to see.  

Hey Jealousy

I want to talk a little bit about stimming.  I can't believe I haven't brought this up before because it is such a major part of our existence.  Both of our kids exhibit stimming behaviors.

http://autism.wikia.com/wiki/Stimming

With Nate it is almost always auditory, oral or proprioceptive.  His very first stim was a repetitive noise, and because John and I were in tune with these type of behaviors it set off alarm bells pretty quickly after it began.  He also runs around humming most of the time, or repeating the same string of vocalizations, which sound remarkably like words but are not.  He also hurls himself at things a lot- he is seeking deep pressure in doing this- loves to hurl himself on the floor repetitively.  This probably should disturb me due to the risk of self injury, but it is such an improvement from his previous head banging (walls, me, furniture, crib) that for now, I'll take it.  His lap-running is also a stimming behavior.

Jack's stimming is errrr, quite a bit different.  Almost all of his behaviors are proprioceptive and vestibular.  He did a lot of flapping as a toddler, but with age that has for the most part gone away.  He also hums quite a bit.  His main stim these days involves a type of rocking that is very uncomfortable- mainly for mommy.
http://www.autism-pdd.net/testdump/test25536.htm

This is an uncomfortable and taboo topic for many parents.  Jack has been exhibiting this type of behavior since he was about 2 years old.  The difference is that his "venue" is not a pillow, furniture, the floor.....it's ME.  I know that he has no intention of making me uncomfortable, or at least didn't in the beginning, now I question that. As he has gotten older, and because I have always told him it's a private thing, and he shouldn't be doing this around other people, he now uses it as an "attention getter".  So whenever I am trying to work, or I am on the phone, or trying to have a conversation with, say my mother, or my husband, the behavior starts.  This has been a big problem for a long time and I am at a bit of a loss.  His "play therapist" literally shrugged her shoulders at me (yeah, thanks), and his OT suggested I "brush" him more.

http://www.ot-innovations.com/content/view/55/46/

It's not that I am unwilling to do this, but I did it every 4 hours for about 4 months....kinda burnt out.  But, alas, I guess I will have to give it another go.  I don't want Jack to feel like I don't want him near me, but it seems that lately, every time he approaches me, this is the intent, and of course I tell him to stop.  I tell him he can hug or kiss mommy a million times, but that he cannot do this.  He laughs.  ugh

Another big provoker of this is daddy time.  Not Jack and daddy time, but mommy and daddy time.  Can you say jealous????  To be fair, when John and I were going through our difficult patch, the boys physically pretty much had me to themselves.  It has to be a bit odd to see such a change between your parents.  But as with most things, Jack takes his jealousy to a slightly higher level.  If we hold hands in the car, he has said "daddy get your paws off her".  If we hug--- in comes the stimming behavior.  If he rubs my back, Jack jumps onto the couch, removes his hand physically from my back and takes over- for 3 seconds.  Dude, you do not interrupt a woman's back rub!  He clarifies with us over and over again that we are married, that daddy loves mommy, which is really very sweet.  I have no doubt that he felt the previous tension between us, and is seeking reassurance.  Anyway, this morning he crawled into our bed (at 5am, sigh) and found us with our arms around each other.  He bit John's hand.  Awesome.  And then the stimming.....autism affects ALL areas of life people....ALL AREAS.  

Integrity

Does it ever feel like this has just gone out the window?  Not for everyone, I know, but man, some of the stuff I hear these days just boggles my mind.  I have been blessed for the most part- our family has been in a lot of need this past year, and we have had to rely on others way more than we ever have before.  Teachers, Doctors, OT's, PT's, speech therapist, behaviorists, therapists.  There are really some treasures out there, and we have been lucky enough to know some.  Our pediatricians, amazing.  My PCP- awesome.  Even the pediatric dentist was pretty great.

So what does this mean to me?  Personal attention, actual genuine caring, follow through.  Doing one's job to the best of their ability and for the right reasons.  Looking out for your patient or client's over all welfare.  It's not always easy to do.  I am a nurse, I function as half nurse and half social worker on a daily basis.  Speaking as someone who works with a difficult population that includes addicts, people without homes, very ill people with no social support, end stage organ failure, and poverty there are days that it is really a challenge to be compassionate, to say "sure I would be happy to look into why you have to pay a dollar for your thousand dollar prescription" or no problem, I would love to call and tell off the transportation company  that drives you around FOR FREE because they were 15 minutes late.  There are those challenges.  Then there are the times I have to literally pinch myself to prevent myself from laughing- I have heard stories about people's rectums that would make your eyes roll back in your head.  And remember, these conversations are recorded.  Straight face is absolutely essential.  Thank God I can text my supervisor and tell her that I really hope my current conversation is being recorded because she will find it very entertaining.  And there are also times when my patients, when I ask them how their post-transplant follow up is going, tell me that their leukemia has relapsed and they have just been told an hour ago that they have 3 weeks to live.  How do you comfort someone telephonically about something so traumatic?  It's difficult for sure.  And it was even more difficult when I was at the bedside, and knew my patients for years at a time, and then watched them die.  BUT, I always maintain my professional integrity.  No matter how difficult it is- because it is not only my job, but my profession.  It is something I believe in and it is the reason I am a nurse.  My personal interests can have no bearing on my professional performance.  I would never direct a patient to do something, or even push them in a certain direction.  That is WRONG on so many levels.  To take someone who has trust in you, as a professional, to be there, to do your job, and to be an upstanding human being and betray that is despicable.  And I have nothing but pity for professionals that operate on such a low level.  I know I complain that my calls are now recorded, but when I hear stories these days of misconduct in the caring professions, I understand it. And frankly, because I am not inappropriate, I am fine with it.  Record away!  Hope they don't mind cheesy jokes or gossip among professionals.  That's just part of job satisfaction.

I am trying to express a very deep betrayal without saying much. There is only one intended recipient of this post. Integrity is everything.  If you lie, if you overstep your bounds, if you exploit your clients, you are nothing.  And you deserve even less.  That is all....

And to the rest of the world?  Have a GREAT weekend!!!!

Moments of Lucidity

OK, I seem to be on a Nathan kick today.  First of all, I am loving all of the suggestions I am getting from my nurse friends already for the supplements.  And yes there are some days I WANT to drop an NG tube, get this business over with and go on with my day!  Oh well.  So my mind is already else where- think it may be the steroids I am on for my sinuses, but it takes a lot to hold my attention right now- brings me once again to Nathan, who is always that way!  He has moments when you can see that he is all there, and then poof!  he's gone, and who knows when you'll get him back.  I thought of the perfect comparison, which I will now share.

My best friend in nursing school, let's call her "Peg" (hehe), dated a real jerk for quite awhile when we were living together.  I mean, made her miserable.  She is this beautiful, funny, brilliant woman and I would ask her why she was still with him.  She would say that every time she was about to break things off, he would have what she came to call a "moment of lucidity" and she would start to believe he was a good guy again....and then it would be weeks before she saw this side of him again.  So for instance, jerk-jerk-jerk-jerk-FLOWERS-jerk-jerk-jerk-jerk-DINNER-jerk-jerk-I LOVE YOU.  You know, the dance.  That intangible "thing" that keeps so many of us hanging in there.  "If he wasn't really a nice guy underneath all of this crap, he would never do/say that."  Needless to say, my friend wised up and now has a wonderful husband and family.  Have I mentioned lately how glad I am that I don't have to date anymore??

Anyway, this is exactly how I feel with Nathan's attention and speech.  He will run around humming for hours in seemingly pointless vocalization, and then all of the sudden he comes out with a new word, or new phrase.  A few weeks ago all of the sudden it was "one two three boom!".  And this past week he said egg.  His sitter and one of his ABA teachers both mentioned that they thought he said "Annie" in the past few days.  This is the sitter's name by the way.  I hadn't heard it, but I know how he just comes out with stuff you aren't expecting so I had a tendency to believe that he was saying it.  So I posted earlier and went for a run.  I came home and he was just running around the family room, so I thought I'd try.  "Annie?"  He looks right at me and says it "nannay".  And THEN just in case I wasn't about to pass out from the excitement he says "go bye bye" and then "bye bye mommy".  John witnessed this also, otherwise I might not believe it myself.  This is incredibly significant not just for the words, but for the sequence and apparent process he went through in his head.  Annie comes each morning, I put him in the car, and she drives him to school.  Annie, go bye bye, bye bye mommy!!  Talk about a moment of lucidity!  In boyfriend equivalency this equals flowers, dinner, and a back rub in the same evening!!!

I tried to get him to do it again while I recorded him, but of course as all parents know, this was never gonna happen.  I did catch him saying a couple of things, and the moments in between when I can't get his attention to save my life.  You will hear me repeat the phrases I hear, see if you hear them too.  Oh, and anyone else who finds something I didn't hear gets 10 points.  :-)

Bitter Pill

Supplements supplements everywhere....

I am really struggling with getting Natey to ingest all of these supplements.  There are soooo many and of course being that he's under 3 yrs old, pills are out.  That leaves injections (do that), powders, chewables, and liquids.  Kids with autism notoriously have very picky palates and Natey is certainly no exception.  Changing his diet last year was hell, he boycotted food for the first few days, which made for a very pleasant little boy. And now that I got him straightened out and eating the allowed foods, it's time to reintroduce others slowly, and he's not having it.  Thank God we have a dog to clean up all the food that he throws.  Right now his list of foods is as follows:
almond flat bread
almond butter
almond flour coated chicken nuggets
any type of chicken
meatballs (which are slightly illegal due to gluten-free bread crumbs, but screw it)
strawberries, but only when very ripe
dried mango
dried banana
scrambled eggs
bacon
occasionally cooked carrots
gummy vitamins
white grape juice.

Yep, that's all of the "legal" foods that he will eat.  Other things that he would eat if I let him (I know this b/c I watch him knock Jack down to get to them):  fries, fish sticks, ANY sweet, all cereals, veggie booty, any chips, popcorn, and basically any other junk he can get his little paws on.  As time goes on, it is getting harder and harder for me to deny him.  I just want him to be happy and I really feel like I am depriving him of one of the few things he really seems to understand and enjoy (food).  Mommy guilt comes in all shapes people.  You give too much, you take away too much.....can go either way right?  So as I said, I have been trying to reintroduce some things, and failing miserably.  All other fruits and vegetables go flying right away- but I keep trying because of that whole idea that it takes multiple exposures for the child to accept something.  Yeah, so far it's just not happening.  I have tried to change his beverage of choice as well- he used to love all milk, even coconut milk when we removed dairy.  I have tried every variety of coconut milk this time around and it gets immediately spit out.  Ugh.  Which brings me back around to the supplement issue.  I am fishing for ideas on how to make this happen...I have divided them up into 3 different drinks throughout the day, but sometimes he'll drink it and sometimes he won't.  I will be honest....I sure as hell wouldn't drink it- have ya tasted curcumin lately?  In grape juice?  Ughhh....I am lucky he takes any of it at all.
So right now it goes like this:
1st drink:
curcumin 300 mg (powder)
P5P 1 cap opened
folinic acid 1 cap opened'
gummy vitamins right now, but I am trying to work in super nu thera liquid (cherry flavored) b/c it has P5P already in it, thus eliminating the need for that capsule.  It also has vitamin levels that have been shown to be beneficial for kids on the spectrum.  He's not digging it, and he loves the gummies.  Better than nothing I guess

2nd drink:
grapefruit seed extract 6drops
b-complex drops, 1/2 dropper
probiotic cap opened

3rd drink:
curcumin 300mg (powder)
zinc, 1/2 cap opened
naltrexone, 3cc
calcium powder (this he really hates)
fish oil- takes it separately and loves it (barleans swirls)

I have tried chewable probiotics and calcium lately but he won't do it.  They taste good, as I have tried them, but I think it's the texture.  He rejects half of these beverages I listed above, partly, I am sure, for taste, but I can't imagine the powder texture is pleasant either.  Plus, half the time it clogs the no-spill valve on his sippy cup and then the cup starts leaking....it's a mess.  I have tried making smoothies- he hates them.  So I am at a loss and begging for suggestions/advice. Please message me if you have something to offer!!!  

Fight on State

I have decided to weigh in on the Penn State scandal/tragedy.  I feel that I am qualified to do so for a multitude of reasons. Most importantly- I went to Penn State.  I studied biochemistry there before I went to nursing school.  I spent 4 years on that campus- 1994-1998. This was also during the initial investigation of Sandusky and while the abuse was actually occurring.  The thought of that makes my skin crawl.  As with many (or even most) big universities, the football players had perks that none of the other students did.  I had two good friends who ended up living in Nittany apartments during our senior year....it was very difficult to get into these apartments because you see, this is where the football players lived.  Relatively speaking (and I do mean relatively), this place was POSH.  To me, this is just one more symbol of the larger problem.  These apartments were SO MUCH NICER than Atherton Hall- where the university scholars lived.  Kinda reminds me of my previous blog entry debating insurance coverage of Viagra vs. supplements for Autistic kids.  Anyway, I digress.

Graham Spanier was a relatively new face on campus at this point.  And the students were not loving him.  Why?  He was cracking down on drinking.  On campus and at fraternities.  Really cramping the students' style.  When I look back on this now, I want to say to him really?  Open containers vs cans at frat houses was the biggest issue you could come up with in 1998?  Once again, this thought makes me feel sick.  I abhor Jerry Sandusky and this whole situation.  There is no doubt in my mind that he deserves whatever he gets.  I do not know another alum who disagrees with me on this.  I also am not opposed to Penn State facing the penalties the NCAA is imposing.  It is so important for the victims and for programs and coaches across the country that they act swiftly and strongly.  They need to make it known that this type of situation will not be tolerated on any campus.  My husband and I are in complete agreement on this.  So why is it that when he posts something to this effect on his facebook wall that I want to jump down his throat and tell him to stop talking about it?  I agree with him right?  What's my problem?

 I am going to try to explain to you why, even though this scandal has all but ruined the university's reputation at this point, students and alumni at Penn State are up and arms and defending their school.  This situation is indefensible, we are not defending what happened by any stretch of the imagination, but we remain loyal to our alma mater and will always look back on our college years fondly.  Well, what we remember of them....  
Rewind about 18 years (holy crap!).  I had just come to Penn State from South Jersey and was not as familiar with the PSU "legacy" as most other freshman.  My family was Indiana University basketball all the way- both of my parents graduated from there as did both of my mother's parents (my grandma played basketball while she was there- such a dynamo!).  If someone said Bobby Knight I would say "what did he throw and did they win?" in my sleep.  So when I was at one of my first fraternity parties and someone mentioned Joepa, I said "who?"  Oh man, ask my best friends from PSU, I NEVER lived that down!  Never!  A Joepa mask (yes they made those) mysteriously appeared around Halloween that year and guess who wore it?  On campus this man was a god.  Do I think it's appropriate for one man to achieve that kind of status for coaching a football team?  Honestly, no.  Was it all about football?  For some maybe.  Joepa had achieved almost a replacement father status for the student body.  Whatever he said went (and apparently this held true for the administration as well sadly).  I remember one year we had a huge snowstorm right before a big game (Univ of Michigan).  Students shoveled out Beaver Stadium all week,  and even so on Saturday we all had our feet on snowbanks while watching the game.  At one point (all in good fun I am sure haha), fans started pelting the University of Michigan players with snowballs right before a play.  All it took to completely stop this was Joepa getting on the mike and saying "cut it out".  And we are talking drunk college kids.  That's power.  And yes, when I say this I realize even more that if he had knowledge of Sandusky's horrific acts, he did have the power to stop it.  And yes it makes me sick.

The point of this story for me is that the Penn State students came together that week, when the campus was practically paralyzed, to shovel out that stadium, and to attend the game in the ridiculous weather.  The sense of community that has revolved around the PSU football program is what so many of us are mourning right now.  And while it started and revolved around football, it was and is much more about the student body.  It is a feeling of belonging to something at a time in life when things are very uncertain for most of us. And always having a place to come back to.  It is about being in a strange town somewhere, seeing a Penn State t-shirt on someone, and saying "hey, I went there too!".  You have no idea how often this happens!  My older sister waitressed while she was in college in Ohio.  One day a guy came in wearing a Penn State tshirt and she said, "my sister went there".  They talked for a few minutes and eventually realized that this guy and I knew each other, in fact had met during freshman testing and been acquaintances throughout the four years we were there.  Craziness.

I loved the feeling of being a Penn Stater so much that I totally encouraged my baby sister to go there too. And I know that she had a similarly wonderful experience and feels just as devastated by these revelations as I do.  So if you see a facebook post that says something like "Fight on State" or "We Are....", please don't criticize or make fun of it.  While the scandal is definitely about football, these statements are really an affirmation for all Penn Staters that no matter what, our community will stay intact.  It's a community that may have started because of the football program (oh ok, it really started with cows and manure, the smell of which will haunt me for the rest of my life), but I believe that it is too strong to be taken down with it.  

Listening...

We are all guilty of it....we zone out, we think about what we are going to say next, we ignore....I know my mom, dad, and husband's tone of voice when they have turned off and I am talking to a wall.  My phone at work often acts up, there are times when a patient can't hear my voice, and I have had people continue talking to me for up to 15 minutes without realizing that I haven't said a word in a really LONG time....hilarious.  I have watched  therapists we have seen  zone out....helloooo?  ya there?  Listening is one of my biggest concerns with my boys.

I know, I know, EVERY parent with young kids feels like their kids don't listen to them, don't answer them, don't obey them.  But as I have said in the past, I have called Nate's name 35 times and had him never turn his head.  I can ask Jack to do something 15 times and get the same result.  This is not all the time....they both have more attentive moments and times when they seem to be "gone".  I don't know that this is really about listening so much is it is about lack of joint attention.  Well ok, it's probably about both.

http://autism.about.com/od/SymptomsofAutism/f/What-Is-Lack-Of-Joint-Attention-In-Autism.htm

Question: What Is Lack of Joint Attention in Autism?

If you have a child with autism, you may have heard therapists tell you that your child needs to work on something called "joint attention." What is joint attention, and why is it important?

Answer: When you and your child are reading a book together, you are paying "joint attention" to the pictures. When you are reading the book and your child is playing with his fingers, wandering around the room or noticing a bird flying by the window, you may be reading to your child, but your child is not engaging with you. It can be very tough to develop joint attention skills in a child with autism, but of course the ability to attend to a conversation or activity along with another person is absolutely critical. Why is it often hard for kids with autism to build joint attention skills?
Unlike typically developing children (or even children with related disorders such as ADHD), children with autism are often more interested in and engaged by their own thoughts and sensations than by other people or even the outside world. As is implied in the word "aut"ism (meaning "self-ism"), people on the spectrum tend to focus inward rather than outward. While that's not necessarily a problem some of the time, it can limit children's ability to learn through imitation, develop play and social skills, and attend in a learning situation such as a classroom.
Quite a few therapeutic techniques specifically help kids with autism work on joint attention skills; all of them begin with the idea that true joint attention only occurs when both parties actively WANT to pay attention to the same thing. Applied Behavior Therapy (ABA) has been used successfully to build joint attention skills, but developmental and play therapies including Relationship Development Intervention (RDI) and Floortime may be even more effective. While there isn't a lot of research to compare the outcomes of behavioral versus developmental therapy in treating lack of join attention skills, parents will certainly have a lot more fun working with their children through play!
If you're working on building joint attention with a very young child, it's important to figure out, first, what's likely to engage them. Many children with autism respond well to gentle tickles, chase games, bubble popping, and other fun, sensory-friendly, open-ended activities. These can serve as a terrific gateway to back-and-forth play, shared activities such as building with blocks, and much more.


So this is something we have been working on with the boys for a LONG time.  Can I say that it is working?  Not really sure.  For both boys, environment is so key.  If we want to engage either of the boys in an activity there can be NO distractions.  This can be very difficult, because there are constant distractions for these guys in almost any situation- #1?  Their brother.  But on top of that, auditory sensitivity can really contribute to the problem.  There is a belief that kids on the spectrum have a very difficult time, how can I put it, prioritizing sounds.  So, because they are sensitive to sound, a mere ceiling fan going in the room can be enough to keep the boys from completing a project, or responding to a request or question.  So forget trying to engage them at all if the TV is on.  It is also one of the many reasons we avoid busy places.  Not only do the boys get overwhelmed by all of the stimuli very quickly, but they are very unlikely to obey requests such as "stay with me" or "don't touch that".  One of the hardest things for me to remember at times like these is that neither of them are trying or intending to be "naughty".  This is something that they struggle with because of the condition they have.  So frustrated though I may be, will punishment or yelling really help the situation?  Not likely.  More likely, yelling will just escalate the problem by overwhelming them further.  Am I guilty of doing it anyway?  Absolutely.  But every once in awhile I need to step back and remind myself of reality.  Jack and Nate's OT has suggested something called therapeutic listening.  At first I felt like saying, I don't think talk therapy is going to help my nonverbal toddler, but they gave me a handout and now I get it.  This therapy involves listening to recordings on headphones for about 30 minutes several times a day.  The aim of this therapy is to help autistic kids, with underdeveloped nervous systems, differentiate the human voice from other noises in their environment.  See another parent's experiences below.  

Read more: http://www.autismsupportnetwork.com/news/our-experience-therapeutic-listening-autism-therapy-78736273#ixzz21J0Aqj3m

So this is yet another avenue I am exploring.  It will probably cost us about $250 to get up and running, but really, if both boys ending up needing it, it's likely a good investment.

This is on my mind because kindergarten is on my mind big time.  I am not worried about Nate's school situation right now- those educators deal solely with kids like Nathan, and he is one-on-one daily literally working on joint attention and imitation most of the time.  But Mr. Jack is about to enter the fray of public school to the fullest extent.  Full day, mainstream kindergarten.  15-20 other kids shifting, mumbling, asking questions, answering questions.....hundreds of distractions, many transitions and the longest day he has ever had.  I am so worried about his ability to attend in this situation.  Even last year, in pre-K, the program catered to kids with special needs and the special educator and OT were very involved in the day to day activities.  There is no room for that this coming year.  I keep thinking of full day school as such a good thing for our family, but I am thinking of our daycare needs when this comes to mind, not Jack.  Neurotypical kids are expected to perform at a much higher level today than any of their parents had to at the same age, but it feels so wrong that my little boy with challenges like his is also expected to do the same. We could send him to private pre-K for another year, and we have considered this, but the bottom line is that I am not sure that it will make a difference.  He is going to face the same challenges and distractions for the rest of his life, and I am not sure it will matter if he starts this year or next.  It's going to be tough.  

 I just know that I am going to be holding my breath every day for a long time waiting for a call like "ma'am you need to come pick him up, what were you thinking sending him here".  Of course I waited for a similar call last year too and the only one I ever got involved him scraping his knee on the playground and an obligatory call from the school nurse informing me of the "incident".  I don't think the school nurse had to call for every bump when we were kids did they?  Figures....isn't there like 1 nurse for three schools now as opposed to 1 at each school when we were kids?  So of course we would expect them to do MORE.  It's the culture of our country and lawsuit happy society. OK, off my soapbox now.  Feeling a little bitter that my work calls are now recorded.  Luckily I work with a great team, and when we called in to our daily conference call last week, one of my coworkers inadvertently started singing In-A-Gadda-Da-Vida just entertain anyone who might be listening.  Ahhhh.....it's so nice to feel like a professional.  


So anyway, as always I am a nervous wreck, haha.  One advantage of watching the boys battle with joint attention and listening?  I am becoming a much better listener.  I have been catching myself thinking of other things, or what I want to say when someone is talking to me and correcting.  Really making the effort to listen.  If you haven't done this lately, try it.  It's actually very relaxing.  Even if it's all about propellers and BF-109's.  

Mommy Victory of the Week.

 I must gloat....and share some information that might be useful to other autism parents.  Nate has been on enhansa (enhansed absorption curcumin) for about 6 weeks now.  We have new words, we have more eye contact, we have naughtiness :).  Now, he has also started on a higher dose of B12 injections, P5P, folinic acid, and naltrexone.  And yes we introduced them a week apart.  A week is really not enough to concretely determine if something is effective so I find myself questioning which thing is working.  Solution?  For now he stays on all of it.  Anyhoo, as you can imagine, this is quite expensive.  And I have no doubt that at our next visit, Dr. Brenner is sure to add more.  I went to the online pharmacy who sells enhansa to reorder....www.leesilsby.com.  This is a compounding pharmacy in Ohio that specializes in kids with autism.  They have their own supplements and special formulations of different supplements that are easier to administer to kids with picky palates- such as creams, and various transdermal formulations.  I was on the enhansa page and saw a little note at the bottom stating that parents should check to see if this drug would be covered by their individual insurance company....it's rare, but it does happen.  So I called the pharmacy to request the NDC (national drug code) as with all medications there are multiple different names and who knows which one the insurance company has it listed under?  (see my job comes in handy ALL the time).  I then called our drug coverage plan.....get this!!???  We have been paying approximately $45 a month for the enhansa out of pocket.  With a simple little thing called a prescription (which our amazing pediatrician called in within hours) a 3 MONTH supply is.....wait for it....8 bucks!!!!  I swear I was on a natural high for the rest of the day.  NONE of the boys other supplements (other than the B12) are covered in any way shape or form.  The specialized multivitamin is $60 a month, the probiotic is another $60, Bcomplex drops are $24, Calcium chewables are $17, folinic acid is $15, P5P is $17, zinc is $11, naltrexone is $6, fish oil is $20, grapefruit seed extract $9 (this lasts for like 6 months though), B12 is $35 with insurance, oh and Mg sulfate cream is $18.  Holy crap.  This is the first time  I have really allowed myself to itemize this.  That's almost $300 dollars a month in supplements a month for those keeping track, and that's just Nathan.  Admittedly, Jack is not on as many supplements, but still.  We are talking a car.  So I will take $45 a month back in my pocket, thank you very much!


This, ladies and gents, is why, when a child is diagnosed with autism and parents ask, "what do we do?" a frequent response is "how much money do you have?"  I pray all of the time that someday these treatments will be acknowledged as viable medical treatment for autism, and that insurance will start to cover more of them. I mean, they cover birth control, acne medications, Viagra......to me, these are all quality of life medications.  These supplements help our children's brains function at a higher level.  Hmmmmmm.......what's wrong with this picture?

Short and Sweet!!!

He said CUP!  LOTS of times!!!!  CUP!

Autism and Vestibular Issues

Thought I would address this issue for multiple reasons....one, it is a very active problem for both of our boys, and two, because I am pretty sure that it is something that the population in general does not understand about kids on the spectrum.  Vestibular issues in autism include both hypo and hypersensitivity.  A perfect example of hypersensitivity is Jack.  A perfect example of hyposensitivity is Nathan.  This is one of the main issues they work on in OT. All of Jack's gross motor delays (for which md's had recommended PT) have turned out to be more sensory related than due to physical inability.  See below:

Vestibular System: The vestibular system refers to structures within the inner ear (the semi-circular canals) that detect movement and changes in the position of the head. For example, the vestibular system tells you when your head is upright or tilted (even with your eyes closed). Dysfunction within this system may manifest itself in two different ways. Some children may be hypersensitive to vestibular stimulation and have fearful reactions to ordinary movement activities (e.g., swings, slides, ramps, inclines). They may also have trouble learning to climb or descend stairs or hills; and they may be apprehensive walking or crawling on uneven or unstable surfaces. As a result, they seem fearful in space. In general, these children appear clumsy. On the other extreme, the child may actively seek very intense sensory experiences such as excessive body whirling, jumping, and/or spinning. This type of child demonstrates signs of a hypo-reactive vestibular system; that is, they are trying continuously to sti mulate their vestibular systems.

http://legacy.autism.com/families/therapy/si.htm

So Jack has loved to WATCH things spinning since infanthood....blades of grass, propellers, pinwheels, fans, you name it.  But spinning HIM?  Yeah, no.  He likes to spin slowly, but as the speed picks up he goes into a complete panic, although this has improved significantly with his OT.  Back and forth swinging has been, for the most, part fine.  He wouldn't go on slides independently for a LONG time, he still takes the stairs two feet at a time, he is very very hesitant about trying new activities.  His sensory issues have affected his desire to color, use playdoh, cut with scissors- and this in turn has caused hand weakness because he has resisted doing what most kids his age do to increase this strength.  This is something else he works on in OT.  He definitely has an impaired sense of his place in space....falls out of his chair frequently, drops his cup multiple times at every meal (thank god for sippy cups), trips all the time, and will not ride a bike unless we "buckle his seat belt", as this makes him feel more secure.  So these are things we are working on.

Yesterday our day care provider was sick, so John and I took shifts...he took the morning, and worked the afternoon and vice versa.  I got to take the boys to the playground, which really is an OT experience for both of them.  I chose to take them to a playground that has tire swings because this is a really good way to stimulate the vestibular system (and yes, I do choose activities based on that).  He loves the tire swing, but cries every time he starts using it, until his little system can regulate a bit more.  It went pretty quickly yesterday and he tolerated amazing amounts of "unruly", side to side and spinning movement.  It was so neat to see.  Almost all kids on the spectrum LOVE to swing.  Both of my boys have always been those kids who can sit in the swing the entire time they are at the playground.  It is soothing, and gives both of them input that they crave.  I guess you can think of it as a more highly evolved way of "rocking" (if you think of this "typical" characteristic of autism).I have to bargain with Jack to get him to climb, or try monkey bars, or go down the slide.

So after this experience, I decided we were going to be brave.  Last night Jack and I met some friends at the local carnival.  I went knowing that he might refuse to go on any rides, and that all of the stimulation could cause a meltdown.  And he definitely had some moments, especially when we first got there....so noisy, so many lights, so many different places to look.  This is why I made sure we went in a one-on-one situation.  I was able to get him to focus on one thing at a time, and for the most part it worked.  Except with the dragon ride....

He did find several rides that had propellers on them- spinning bears with propeller hats, helicopters, and he was up for these as long as mommy went with him.  And he even did a few little car rides by himself.  He cried at the beginning of most of the first rides, but calmed down and even enjoyed it after awhile.  If you look at the picture below to the right you will see that he found an "excellent" piece of grass on our walk to the carnival grounds- great propeller shape.  He carried it everywhere, totally brought back memories!

On our way out, he freaked for a Diego doll (deluxe blow-up of course) and I caved.  Hey, it wasn't a plane or a sea creature, so I'm gonna encourage it!  When we got home, he wanted to give Diego a snack and then brush his teeth.  Went in about 10 minutes later and found him like this!  So sweet....

This morning while eating his daily peach, he lost his first tooth!  And that was the first one to come in too!  Getting so big!

    

It's all relative....

Totally forgot that Nate's special educator was doing a home visit today....we had to reschedule during the power outage last week.  Good thing I never leave the house!  I often dread these visits because I don't know what I am going to witness.  I get a sheet about what Nate is doing every single day from ABA...so I guess I should know in theory.  But Nate has a different aide working with him daily (they rotate) and he performs differently for each one depending on how they interact with him, his mood, the tasks presented to him, etc.  So sometimes when Kristen comes to the house Nate is spot on with his ABA tasks, and sometimes it is really rough.

I was worried  when she got here because he was outside playing with his water table, and he was not going to want to come in.  But he actually did so pretty pleasantly, and of course went right to the table when Kristen said "Nathan come here".  Yeah, I would get a look and "daccchhh" if I requested that.  I am mom, I get the crap, haha.  Today was a GOOD day.  He completed almost all tasks, and the one he didn't complete was more a matter of him being 2 and being done for the day, it was something I have seen him do before, and know that he is capable of.  Here are his tasks:

matching objects (field of 8 different objects set out and one object handed to him at a time to match- has to scan for the right one)- got them all right!
stacking cups- in increasing sizes- check
shape sorter- 7 different shapes- check
4 piece puzzle- check
peg board- placing pegs in a hole- he wouldn't complete this, started throwing the pegs and screaming (DONE)

I recognize these tasks are more appropriate for a child that is about 18 months old.  Here is mommy's recent development (and I am very proud of this by the way)- don't care!  I am so stinking proud when he accomplishes these goals!  I said to Kristen today- he is my little genius!  It really is true that these small accomplishments mean so much more with him. He works so hard to reach these goals and I can literally see his little mind working overtime when he does them.  I am very proud of my little boy!  THEN, when she told him "all done"- he looked at me and said "go out" and walked to the door.  OK, maybe it's cheesy, but just telling the story brings tears to my eyes.  My boy!!!  

SEED

Things are settling down now after the power outage, etc.  During times like that it's hard to think about plans, next steps etc.  But there are some things on the horizon that I am working toward right now.  Time to refocus my efforts!

I got a call from Johns Hopkins last week related to the SEED study.  SEED is the largest study to date in the U.S. seeking to identify risk factors for autism.  It is funded by the CDC and is being conducted in multiple different locations...California, Colorado, Georgia, Maryland, North Carolina and Pennsylvania.  This study involves a bunch of historical information from both mom and dad, identification of possible genetic factors, problems during pregnancy, early childhood, etc.  It also seeks to identify other concurrent health conditions (ie, conditions that seem to occur with autism- think seizures, celiac disease, psychiatric disorders, ADD, etc).  SEED is unique in that it accepts, in fact seeks out children that have other physical and developmental disabilities in addition to autism.  Most studies about autism only look at children that have this disorder and this disorder only.  So a lot of the sharing would be with mom and dad- and mom and dad would give saliva and blood samples in order to determine if there is any genetic link involved.  John and I both feel strongly that we want to know this.  We have accepted that our family is complete, although this is not what we originally wanted.  Our boys need too much of our attention and knowing their needs, we could not in good conscience bring another child into our family and possibly deprive that child or deprive my boys of what they need.  And there is the huge unknown factor....genetics.  Would all of our children be on the spectrum?  The odds thus far are not in our favor, 2 for 2.  We both have siblings that are either still working on their families or have yet to start them.  We want to have as much knowledge about the roots of our boys' conditions as possible to share with our families as they plan their futures.  And we want to know for the sake of Jack and Nate and (god willing) their possible future families.  So that alone makes this study worth participating in.


Nate will have to endure the same developmental assessments that he has in the past, as well as a brief physical exam.  Nothing earth shattering.  There is no intervention associated with this study.  It is solely for informational purposes.  Autism is such a mystery to the medical community at this point....if there is any way that we can help the cause, we are going to do it.  And we may gain some valuable information for our family in the process. Win-win.  They are just now recruiting for the next leg of the study- there have been groups recruited and tested since 2009...we signed up for this study back in April.  


Nate has been challenging us a bit this past week.  Frankly, he is being a two year old to the fullest extent.  It is very frustrating with him because while he is being extremely obstinate, he is unable to really tell us what is making him mad or what he is refusing, or why.  So he screams.  For instance, ever since we all slept in the family room during the power outage, he is fighting the crib like nobody's business.  Not unusual at this age, but all the information we get from him is "no!" "go!", or occasionally "go down".  Is he afraid?  Is he mad?  Insomnia?  Worried about global warming?   Not sure.  Although my gut believes he is pissed- he liked the other arrangement much more.  But he has been screaming in his crib every evening and waking up at 2:30am for more of the same.  Last night it went on until 4:30.  Every time I start to feel guilty, or worried that he is really sad or afraid, I hear him make his trademark, angry, what we call "german" sound.  Dacccchhh!  I will have to get a good recording of it and post it because it is hilarious.  And very very purposeful; and defiant.  Luckily by tonight he was too flat out exhausted to fight.  We took the boys to Rolly Pollies this evening and ran them until they dropped.  Pray for us that he sleeps tonight.  Between him and Jack (who was also up twice last night- par for the course) we were really dragging this morning.  Nate is also fighting his diet more than he ever has before.  Refusing the food we give him at meals and then getting out of his seat and literally tackling Jack for what he has.  I think this is a good thing- he is more cognizant of the fact that Jack has something else and he is MAD.  He wants bunny graham crackers too!  And he is certainly communicating that.  


He is also Mr. Destructive.  Knocking everything down with wild abandon, then lying amidst the rubble and laughing like a little maniac.  See exhibits A and B.  Hey, if being "naughty" is a good sign, things are looking up!!!  

                A

B

Bookends

Well, we finally got our power back this evening at about 6:30 or 7.  That's 6 days with no power.  And it was 100 degrees today.  I have had many things to say this week, but decided to try to subscribe to that whole "if you can't say something nice, don't say anything at all" thing.

I will say this.  I can think of quite a few positives over this past week, especially now that the power is back on, haha.  But seriously, it hasn't been all bad.  Nothing like a little power outage to bring a family together.  I mean, we all hung out in the wading pool, took Nate to his first movie, barbecued (ourselves it felt like in this weather!), traveled to various aimless destinations just to stay in the car air conditioning.. .  We all slept on the floor in the family room for the past 5 nights.  I would have thought it would be miserable, and in some ways it was.  Nate does not have the impulse control to lie down and go to sleep without a crib to corral him.  So for instance, last night it was almost midnight when he finally passed out.  But waking up in the morning flanked by your sleeping little boys is a very peaceful feeling.

That indentation in the pillow is my sliver :)

John and I can now declare ourselves expert extension cord runners, I am excellent at resetting the wireless router, and I have much better night vision than I had ever imagined.  The boys and I commuted to my parent's house on the eastern shore on Monday and Tuesday, which was very nice....change of scenery is good anytime, but a change of scenery with central air?  Priceless!  I was able to work from there, which came in handy because even though we had a generator, the cable was out, so no internet....kind of makes telecommuting a little difficult.  Poor John's birthday was on Monday, and I wasn't able to make him his usual chocolate peanut butter cake, but we did manage to go out for crabs thanks to a particularly loyal babysitter (oh all right she's in love with our kids) who was willing to babysit by the light of our one lamp.  We had a great time and got good and messy!!

In terms of the boys....I am astounded to say that over all they did very well.  To be honest, I don't think that Nate noticed that too much was different.  Jack definitely had some major anxiety around all of the changes, but with lots of reassurance he handled it.  As usual in times of stress, his airplane obsession has been out in full force as a source of comfort, as evidenced by the fact that I just finished singing him to sleep with "rock-a-bye baby spirit of saint louis on the hanger top".  And I'm not saying he didn't have his share of meltdowns....I don't want to gloss over the facts- both boys (and their parents) particularly hate being warm...most people are freezing in our house in summer and winter.  So the heat has definitely been getting to all of us.  Lots of pool parties and sprinkler running helped.  We made sure we kept the boys as entertained as possible during the daytime, and turned nighttime into a slumber party atmosphere.  Jack always wants to sleep with mommy and daddy anyway, so for him it was a bonus.  In fact he just complained about having to sleep in his bed tonight.  Sorry buddy, but mommy is ready for her bed!

I had so much anxiety about this whole situation.  I mentioned in a previous entry that the last long power outage we had in August (8 days) seemed to mark the beginning of a downward spiral for our family.  It didn't happen again.  Did each of us lose our tempers?  Heck yes.  Did we get through it?  with flying colors (if I do say so myself).  I was talking to my mom about it the other day (she is brilliant by the way, not just saying it either, really she is), talking about the feelings of deja vu that both John and I were having and how it was making things even more stressful.  And out she comes with a wonderful way to reframe the situation.  She said that maybe this power outage was like a bookend matching the previous one....in the middle was all of the negative stuff....and now we are entering the calm.  True?  I don't know.  But I like it, and I choose to go with her theory.  We weathered this "storm" very well as a family.  Sign of things to come :)

positives!

Power back?  Nope
However, in the past 3 days Nathan has said:
1,2,3 go boom
go bye bye
get down
hug (or the beginning of it)
hi (or the beginning of it)
go puzzle (or go puh)

Thank you God.  I will live without power for another 10 days if Nate says this many more new things.  And I mean that from the bottom of my heart!!!! 

Storm

Power
Terminally out
Severna Park
Deja Vu

Day 3 no power. I have watched most of my family and friends have their power restored, and while everyone keeps saying, "your're next!" I remember last August- 8 days.  Our neighborhood seems to have this special quality....our power goes off easily and remains off longer than almost anyone elses....whoopee.

Last year when our power went out we came to feel like refugees.  It was really bad and we didn't cope very well.  And I associate that exact week with many things....the first time I saw Nathan have what I consider a full blown autistic melt down, the first time we realized he was actually losing words, and the beginning of a very very terrible period for our family. Both John and I for some reason mark the beginning of the downward spiral with that week.  So when we heard the howling of the wind on Friday night, I looked over at my husband in bed and literally saw him praying that our power would not go out.  Then we heard the transformer blow.  I made a vow to myself that this would NOT be like last time.  That we would "weather" this storm in a much more functional way.  We have both had our freak out moments, but over all we have held it together....so far.  The estimate for restoration is tomorrow at 4:30pm.  I always add 24 hours....and feel that is being generous after last time.  I remember that every time I heard a big truck during that period last summer I would sprint for the window.  This time....let's just say I am not holding my breath.

Luckily, John insisted on purchasing a generator after last year.  Literally the day our power came back on he bought it.  He has lived in our town all of his life, he knew what he was doing.  So we haven't lost the boy's special diet foods, or medications/supplements.  Thank God for that.  And we have a TV, and a fan, and a light.  AC......I miss you!!!! SO MUCH!  We spent most of the day out of the house yesterday....we even took both boys to the movies to see Brave (which we were being by taking them).  It was Nate's first movie, unless you count Toy Story 3 when he was 8 weeks old.  He just stared at that screen with his little mouth hanging open, and eventually passed out (sleeping in a hot house is not very restful).  Jack had a running commentary at all times....he sat between John and me and we almost bumped heads several times shushing him.  But he made it....he was not thrilled with the subject matter of the movie and kept asking when the real one was coming on.
I have tried to think of some positives of the power outage....here goes

1.  my body image issues have gone right out the window, at least temporarily, half-naked is fine by me at all times
2.  family bonding at it's finest- family bed, one room living....
3.  My husband and I have discovered that we all have a little Macgyver inside of us waiting to come out
4.  great for the marriage- team problem solving, lots of togetherness.
5.  There really is no need for hot water, especially when it's 100 degrees.
6.  We have a "power outage plan" after last time- all blinds down, curtains drawn, cords run from here to here, etc.  we are really very efficient!
yeah, that's really all I've got.  John is at his office now cooling off, and I brought the boys across the Bay Bridge to my parents' house, they are watching them while I work.  Thanks guys....I am literally sitting here with a blanket across my lap...I am cold, hahahahaha!

Social Skills

In an effort to get Jack into more social situations and work on his listening skills I enrolled him in a little soccer camp that meets once a week for 6 weeks.  It's held at a local center that caters to kids with special needs.  It's called the Cisco Center and here are all of the services it offers:  speech therapy, soccer camp, day camp, art camp, music camp, social skill groups, parent support groups, parent education groups, and parents' nights out.  Oh and um.....special needs centered day care.  How far is it from our house?  Here is when you know that God is looking out for you----- less than a mile!!!!  Seriously.  I had heard of it in the past, but didn't know what it was, and it burned down several years ago.  I knew that there had been many fundraisers to rebuild, I even contributed, but until one of our providers mentioned that we should look into it, I had no idea that this amazing resource was literally at our doorstep.  When Nathan turns three, he will go to a more local program for half a day, and will take a bus.  Jack will be in full day kindergarten.  Guess what?  Because Cisco Center is state certified, the bus will drop Nathan off there when he is done with his other program.  And he will be able to receive care from people with expertise while mommy is working.  This is beyond huge for us....both emotionally and financially.  The center is run by a special education teacher and his wife who is a speech pathologist.  He taught early intervention at the school where Nathan will go next spring for 30 years.  He retired and he and his wife opened this center.  The provider to child ratio is 1:2.  Sigh of relief.

I took the boys over to the center several Saturdays ago just to look around.  About 5 minutes after we arrived, I couldn't find Jack.  He was outside with Cisco's wife, and they were playing a game.  For Jack, that is amazing.  When they met him, knowing he has Asperger's, they asked him "what do you like".  They had to know what a loaded question this was right?  But they endured the 20 minute soliloquy on airplanes like champs, and seemed to know quite a bit about fighter planes.  IE, I have the feeling this is not the first time they met a kid with this much knowledge about airplanes.  They understood Nate's movements, his preferences, and his needs.  Needless to say, it was a very pleasant visit.  Kind of felt like coming home in some ways.  It feels so nice for me when the boys are understood, so I can't imagine how good it must make them feel.

I plan to send Jack to pretty much all of the camps there this summer, as well as the social skills group.  He needs it desperately.  He doesn't avoid people at all....it's more like he doesn't know when to stop, can't sense when someone doesn't want to talk about something, doesn't get personal space, etc.  That's fine around friends and family (well, daddy and I get overwhelmed occasionally, not gonna lie), but when he is meeting new people and doesn't know that there is a different "standard" of behavior it can be a real problem.  For instance, it's all well and good for him to touch his infant brother or cousin's face, but when he goes up to a baby he has never met and expects to be able to do the same thing, it's an issue.  And telling him once, twice, a thousand times is not enough.  So we need some guidance on this issue.

I took Jack to his first soccer camp today (once again, lucky to work from home and be able to take my lunch break for this).  I had no idea what to expect.  It's not like they have a soccer field there, it's more like a back yard.  But they had a coach from soccer tots there, and apparently he runs these "clinics" for kids with special needs at multiple different locations.  There were about 5 kids in the class, and at first glance Jack was definitely the most highly functioning.  In fact, I found myself second guessing bringing him....maybe regular soccer camp would be ok.....the children had needs that varied from mild cerebral palsy to genetic issues, and then I would say the other two kids were on the spectrum.  One of them kept running away, the whole time.  And the other child was continuously throwing things (reminded me of Nate a bit).  Jack asked me to stay, and I was fine with that, was kind of curious to see what the plan was.  Jack immediately became Wall-E (one of his other subjects of interest) and would respond to nothing else but that for the entire day.  I think that most people who met him today think that is his real name.  I have to be honest, no matter how experienced the individual, it always gives me a kind of wicked pleasure to watch a new professional try to adapt to Jack's dialogue and hyperfocus.  This coach was great....but he could not refer to Jack's feet as feet, he had to call them caterpillars.  Not once, but every single time he told him to kick the ball.  Freaking hilarious.  He made the mistake of doing a Barney impression for the kids at the beginning, and now Jack insists he speak in that voice ALL THE TIME (just shoot me). So when we finally got started I was shocked at Jack's lack of attention to the whole situation.  He really had a hard time listening, I literally had to take his foot and move it to the ball to get him to kick it.  Don't get me wrong, he knows how to kick a ball, this is just another example of him freezing in an unfamiliar situation.  Instead of going after the ball, he went up to each kid and did his Wall-E impression.  Luckily, this was not viewed as odd in this scenario.  Although.....Coach Ed was definitely full up on this after awhile, as evidenced by his insistence that Jack try to "swallow a bubble" and hold it in his mouth (ie, not talk).  Haha.  Then coach Ed shot himself in the foot again....referred to the round portable soccer goals as blueberries and the soccer balls as marshmallows.  He will NEVER be able to call them anything else ever again in Jack's presence.  Hope he knows that.  Probably my favorite part of the "camp" was when my son told everyone that he would show them how Wall-E compacts trash and proceeded to put soccer balls under his shirt and "bear down" in order to "compact" them.  Hilarious! So next week, daddy is taking him.....hoping that this was just an adjustment thing and he will have his "game face" on.