A Day With Jack- Ups, Downs, and Tear Provoking Progress

Yesterday was action packed.  I took the day "off"(insert the usual laughter here).  I did actually have from about 9:15 to 10:30 all to myself-  took a shower, put on real clothes- good stuff.

Jack had two doctor appointments yesterday- one with his pediatrician- for preop, and one with the pediatric dentist, also for preop.  Jack has had dental issues since the day his first tooth can in- well, let me rephrase- I could see abnormalities in the enamel right away.  By age 3 he needed 6 fillings and crowns on his back teeth.  It was not a pleasant experience at all- we were asked all of those "irresponsible parent" questions such as- how often do you brush his teeth (twice a day), how much juice does he drink (not much and it's always diluted 50/50), did you give him a bottle in bed?  Well no doctor, because my son refused all bottles after the age of 6 months, he solely nursed until he was 22 months old- a former babysitter was reduced to trying to squirt water into his mouth with a bath toy while I was working. Try again.  And of course, because of the extensive nature of the work needed, and jacks oromotor guarding he had to be under general anesthesia- so about $7000 later...out of pocket...we were all set.  Except that one of his crowns fell off, and then last week one of his crowned teeth fell out??

Anyway- one of his teeth has always been malformed- they tried to reshape it (I am guessing with white filling material) when he went to the or, but it keeps decaying- it's his enamel again.  And he had swelling in his gums around one of the crowned teeth.  We took him to our dentist, who tried to extract the tooth in the swollen area (after an x-ray showed infection)- but jack almost kicked HIS teeth out in the process.  So he sent us to a new pediatric dentist- who wants to extract two teeth, put in spacers, and potentially fill two more. It sucks. But it has to be done

I was looking at the treatment plan yesterday while we were in the office and noticed one of the teeth to be filled was one of his NEW molars- ie in for about 5 months!!! What. The. Heck???? The dentist asked if I had any questions and I was like ummmmm yes.  I told her how concerned I was and she went on to explain that about 10 percent of people are born with this issue.  He has very weak enamel, the fact that any type of decay could happen that quickly just further proves that.  She recommended getting every one of his current teeth sealed, and then, as soon as a new tooth erupts, bringing him in to have that one sealed as well.  This stinks, but at least she is not blaming us and wants to be proactive.  I am thankful for that.

When both appointments, which were obviously quite stressful and stimulating for jack, were over we headed back to his school.  His end of year party was scheduled for yesterday afternoon, all the parents come, and I didn't want to miss it. (Even though if I'm being honest, I would have loved to miss it).  The kids write a book each year, and at the party they share their book with the class- it's a really big deal to them, and I knew Jack really put effort into a story he was very excited about (this year the children were sharing an experience they had had)- although the whole quietly waiting his turn and listening to others first concept is still extremely difficult for him.  Anyway, off we went  As we walked down the hall, his class was coming back from art or music from the other direction- another transition on top of like a million others yesterday.  This is one of Jack's biggest challenges btw.  Then we walk into a classroom full of parents and with lots of food that he couldn't have yet.  It was loud, it was different, and Jack was discombobulated to begin with from the appointments.  And he was really having a hard time.  Now in the hard time department we are actually pretty lucky.  No violence, no self isolation, nothing "unpleasant".  But his little arms start flapping, his whole body stiffens, he starts shouting (louder than normal) and running from person to person, asking them about planes, locusts, dragonflies, etc.  You can immediately tell which parents and children are good with this (some of the kids just LOVE him and it is very apparent) and unfortunately tell those who are not just as easily.  Someday I SWEAR I will stop caring, but yesterday wasn't that day.  When jack has a hard time, I have a hard time.  I just wanted to grab him and wisk him awake from the few disapproving looks.

Turns out, I didn't have to.  His special ed teacher happened to walk into the room, she took one look at Jack, walked over to me, and before she opened her mouth, I said "this is way to much for him.".  She agreed, and asked Jack if he would like to have a chance to read his book to just us.  At first, Jack protested, he said he would have nothing to eat (or, if you want to know his real, scripted answer, he said, "but I'll have no food, no water, no communication"), but then she asked if he would like to fly into the other classroom and he was game.  If you look below, you will see that Jack's teacher has a shelf of vehicles with propellers, all there for one very special Jack, as rewards.

She handed him a plane and we "zoomed" next door to read his book.

I have to say this.  I am so incredibly proud of my boy and his progress this year.  Looking at this book drove it all home, not just his progress with reading, but his ability to coherently tell a story, his follow through, and his willingness to do fine motor activities.  I know that they had a long period of time to work on these books, but even so, compared to last year, this was fantastic.  Not to mention that last year, getting him to go through his book was like pulling teeth (no pun intended, ha).  This year, he just, read it.

 

This is about when my waterworks started.....

But here is where I really started blubbering.  This little boy could barely write his name at the end of kindergarten.  If you asked him to draw a picture, he would likely try to run away or literally scribble a few lines and say that's it.  I know that the drawing above looks very very basic- I know that "most" first graders' pictures look very different.  Don't care.  If you look- the blue is my CRV, the little guy with the big smile is Jack, wearing his favorite color, orange.  The big person in the front is me, also with a huge smile.  This took thought and planning, and most importantly for Jack when it comes to fine motor, motivation

And look at his colossal squid (I commented to his teacher that the person who helped him with this probably had to look up how to spell humboldt, ha)!  It looks completely awesome!    

I wrote this (other than the typo that reads Max- guess he had his typed up right before Jack's, ha).  I LOVE this picture of Jack from Easter, it is so him.  

He continued to have a pretty rough time when we returned to the class for snacks- he had a hard time waiting in line, actually what he yelled was "I DO NOT want to be the line ender".  Guess what, a little girl in his class who was done with her snack came and stood behind him, not to get more food, but to be the line ender so Jack wasn't.  That is a nice kid, right??  I was still trying to keep him calm for the rest of the "party" (or trial by fire for autism families), but I was also in a bit of a bubble- no matter how hard of a time Jack was having, all I could really think about was the book, and his teachers and classmates that are always looking out for him.  Forget those few snotty looks- for the most part, he is surrounded by such positive people every day.  And look at how he is thriving.  I am one happy mama.  

Autism- Hate and Judgement From a Surprising Source- Other Autism Parents

Autism awareness month is over.  And I really haven’t had much to say this year.  There is a reason for that.  The reason is that I am burnt out, and frankly disgusted with much of the autism community.  I have had nothing nice to say about autism awareness this year, so I chose to say nothing.  It’s funny to watch my progression through autism awareness month- the first year after Nate was diagnosed I took him to the Roar For Autism done by Kennedy Krieger and gathered as much information about traditional treatments as I could find.  The next year, John and I attended the TACA conference, and gathered as much information about cutting edge, non-traditional therapies as we could find.  And this year?  We went to Autism Awareness Day at Sesame Place.  And that’s about it in a nutshell.  My own thought processes do not fit into either Kennedy Krieger’s idea of autism therapies or TACA’s ideas of autism treatment.  I am blazing my own trail, like so many other autism parents.  

And once again why is this?  Because no one can really help us.  No one can really tell us what has caused our children’s autism, or how we can assist them most effectively.  That doesn’t stop people from trying, or judging.  I am sick of it.  I wrote about my disgust with the general population’s lack of autism awareness earlier in April, and received so many responses from other parents who felt just the same way.  And yet, here is the most shameful part.  In many circles, the people who are really attacking each other are autism parents who do not agree with one and other.  Or, on the other side, autistic adults who do not agree with parents “treating” their autistic children at all.  And you know what??  I call bullshit to each and every person who has criticized a fellow autism parent.  We all feel very strongly about our beliefs- of what is causing autism, whether it can be treated, whether it should be treated.  But unfortunately at this point in history our opinions are just that- beliefs.  There is not one definitive answer out there.

See, here’s the thing, I disagree with many people’s beliefs about autism.  I choose not to "go after" them or criticize them for their ideas- although today I will mention them to make my point.  For instance, those who say it is a solely genetic “condition”, one that makes an individuals’ brain different and not less, and that this should just be accepted.  I ask you this?  Why have the statistics progressed in this manner?

How much of a jump is that?  And do you REALLY think that this much of an increase is due to increased awareness?  I mean really?  Because I can promise you that if my boys had the same issues and behaviors and were born 15 years ago, I would have known to have them assessed and get them help.  I found out what aspergers was when I googled Jack's symptoms because I was worried.  So once again, I think that theory is a bunch of crap.  I will say it one more time- there is NO SUCH THING as a genetic epidemic.  Genes take hundreds and hundreds of years to change.  There is no way, if this is solely genetic that we should be seeing this degree of an increase.  Right?  So guess what??  To those who think this is genetic (only), a difference in a person, and that it does not warrant any treatment, but only therapies, I disagree with you, sorry but I do. 

And that is how I do feel, that both genes and environment are at play.  And I feel very strongly about this.  However, I do not shove these beliefs down anyone’s throats.  If you have children with autism sitting next to mine eating a big cheeseburger on a big gluteny bun and washing it down with a big glass of milk (packed with hormones) I don’t lean over and say you are a bad parent and what you are doing to your child is inexcusable.  I keep my mouth shut.  Because it is my BELIEF that nutrition has a huge impact on many kids with autism.  BELIEF.  And it is your belief clearly that it does not.  We both have so called studies we could reference, so let’s not waste our breath.  We don’t have a true answer yet.  Although, of course I think I’m right, ha.

The same goes with supplementation, and other treatments- I don’t tell you that ABA/speech/OT/special education are not enough because there are clearly other physiological problems that need to be addressed as well.  That new studies are coming out on these issues daily and that I feel very strongly that you might look back one day and regret not trying these other interventions.  Nope- I run around my house like a madwoman every day getting the boys’ supplements together while making them a GFCFSF breakfast, and intermittently saying, here swallow this, and here, drink this, and praying that I am helping the boys in the long run.   I don’t tell you “shame on you” for NOT doing this, so why oh why are there autism parents and autistic individuals out there shaming parents who are trying these methods, telling them that they should accept their children the way they are and that we are insulting them by “treating” them. 

I hear stories of kids who have shown tremendous progress with these interventions daily telling their moms (now that they can) “thanks for never giving up”.  This means something to me.

So I am pissed off.  Really mad that the autism community has become what it is.  I don’t just blame us parents, I blame the huge amount of conflicting information that we are all handed and asked to interpret.  We all have to draw our own conclusions because no one else has been able to figure it out.  And we all do this differently.  And that’s not our fault- we are all individuals.  And this is a scary damned thing to have to face, every single day, when no one can really tell you what the right thing is.  What I can blame on us parents is the JUDGEMENT.  We all know what it feels like to be judged to be “bad parents” when our kids misbehave, or have meltdowns, hit themselves, cover their ears and yell, or try to run away from us.  And we know these are behaviors associated with autism and NOT our parenting skills.  Can we maybe agree to disagree about autism causes and treatments for now, and band together and build each other up rather than tearing each other down?  Maybe stop calling autism treatments that are not, as you say “proven”, quackery and persecuting  parents who are truly trying to help their children?  It’s my understanding that in order for a treatment to be ruled out, or considered quackery, one needs to know the cause of the disorder first.  Maybe that’s just me.  We are all doing our best, and we all deserve respect for this.  How can we expect others to become “autism aware”, to have respect for what we all go through, when we can’t even do that for each other?    

Happy Feet and Autism- There's a Story There

I would like to talk about the movie “Happy Feet”.  Consider it a preview of future events as Nathan is going as the penguin “Mumble” for Halloween and he will also be having a “Happy Feet” birthday party…after reading this post, you won’t have to ask why, that’s for sure.

I love this movie, and I would ask that each and every one of you who reads my blog and hasn’t seen it pulease go out and rent/buy/stream it whatever you have to do but please watch it.  It’s not just me who loves this movie; Nathan has always had a real affinity for it.  There is a lot of music, a lot of movement, yes, but that could be said about pretty much any kid’s movie.  This one, he loves it. 

The story is going to sound pretty familiar.  A little penguin hatches to two very proud parents and from the word Go it is apparent that he is “different” from other penguins.  He tap dances around all the time (stimming?) His mom and dad are worried, but he “looks” normal, and they send him off to school, where the teacher discovers that he cannot sing.  A penguin’s “heart song” is the way he communicates, the way he finds a mate (penguins mate for life).  And Mumble (yes Mumble) can’t communicate the way all of the other penguins do- instead, he communicates by dancing.  The teacher declares him a lost cause (I believe she says that a penguin without a heart song is hardly a penguin at all?  Cranky b-word) and mom and dad take him to a “specialist”, who says much the same. 

 He is not able to graduate with his peers, he is treated as “less than”.  His father is embarrassed and has a very difficult time accepting his differences, his mom thinks he’s perfect the way he is.  He becomes an outcast- but in the end, his differences end up saving the penguins as he finds a way to communicate with humans and save the fish supply that the humans have been consuming.  He becomes a hero. 

It’s a wonderful story, and I don’t even know if it was meant to be “about autism”, but the bottom line is that for any autism parent, the theme really resonates, and the way the story unfolds hits very close to home.  Mumble reminds me so much of my Nate.  It’s not just that he is different from his peers, it’s his view of the world around him, the way he accepts himself and if anything, seems oblivious to the fact that others may not see him as “normal”.  He is happy, he is in his own little world, and he sees nothing wrong with that.  I believe that Nate is capable of accomplishing great things, which is why I never stop pushing forward in this fight.  That being said….he is happy right now, just as he is.  Of that I am sure.

At the end of the movie, Mumble has the rest of the penguins dancing HIS dance, including his parents.  It is incredibly moving to me, and it makes me wonder, are we missing something?  We all know of people with autism who are considered “savants”, who visibly have a talent or skill that none of us can comprehend being able to accomplish.  There have been interviews with people on the spectrum who report that medications have “helped” them with speech, communication, day to day functioning, etc., but that they could no longer play the piano with the same skill they once had.  Any parent that lives with autism on a daily basis must contemplate this from time to time- why are our children the way they are?  Is it truly a “disorder”?  Is there a higher purpose?  And if so, why are we, as a society, so uncomfortable with all of this?  We are so concerned with our children conforming at times that we (including me) fail to remember the wonderful things that they bring to the table.

 Nathan has taught me more about the meaning of love in his 4 years of life than anyone else ever has.  I feel wise through being his mommy, I understand what acceptance is, and I have a broader view of what is important in life.  So many things that felt “tragic” before Nathan now feel more like….eh.  Things that other parents complain about are things that I dream of for my child.  I would kill for Nathan to really piss me off someday by dating someone I can’t stand, or rebelling.  That is my fantasy!  Please sweetie, marry the wrong girl, move in with her first, move to some exotic country and refuse to wear anything but a thong!  I support you 100%!  The thought of Nathan having that kind of independence….it brings tears to my eyes.  Yes, even with the thong in the same paragraph.  So at this point, that is the biggest lesson Nate has taught me- kind of like that book “Don’t Sweat the Small Stuff- And It’s All Small Stuff”.  You have it in writing now son, in case someday you are reading this- whatever your path is in life- go for it- I just pray that you are someday capable of choosing that path for yourself. 

Nope, Not Buying It Mommy

Today was Nate' first day of ESY (extended school year) services with the county.  This is provided when the skills the child is learning in school are considered life skill and there is concern that these skills will be lost over the large period of time off that is summer break.  I started talking to him about it yesterday, telling him "Natey go on bus to school", "Natey go school", etc.  Of course being that he's pretty much nonverbal it's difficult to know how much of this he was comprehending.  But this morning when he was snuggling with us in bed he said an approximation of "I go school", so I took that as a good sign. 

Not so much.

I have told you all that Nate has been really thriving at Cisco Center.  I mean the kid loves it there.  Below is Nate's progression to a meltdown over not getting in the car to go to Cisco Center this morning (captions of course added by me)




Let’s get in, you know, the car???

 




Uh, Lady, can ya hear me?  Do ya get it?









Fine, I’ll show you since you seem to be a little slow….











LET. ME. IN!!!!!!

 

It didn't help things that the bus was about 25 minutes late because a tree fell across a road last night.  He did go on the bus willingly when it eventually showed up, however he was NOT pleased.  I was happy to see some of his buddies from his regular ECI  class there.  The summer program is different hours, a different bus, different drivers, and a different school.  This is quite the transition for Mr. Natey, so hold a good thought that he has a good day!

Accomplishments Only An Autism Parent Could Love.....

Us Autism parents develop crackhead senses of humor, it's just necessity.  The "new normal" is not just a catch phrase, it is truly a way of life, and let me tell you, as an autism parent, if you don't find your way to this place, you're gonna be pretty miserable.  Normal developmental milestones just don't apply, so you kind of create your own.  We have had a few lately that have been particularly ridiculous so I thought I would share here...
Here are some things that John and I are proud of that may make you shake your head...

1.  Jack is obsessed with hunting and guns right now.  The gun thing drives us both crazy- and he doesn't even own any!  However he turns sticks, golf clubs, mechanical robot arms, and large bubble wands into guns- he also made me build a robot gun out of his gears set this past weekend- this is amazing pretend play, so whoohoo!!!

2.  Nathan is developing a very jealous/possessive streak when it comes to mama.  Jack cannot sit on the opposite end of the couch from me without Nathan screaming because he doesn't want him that close to me.  He walks over and smacks him.  On the plus side- they are interacting!!!!! AND- Nate is communicating!

3.  I mentioned the potty training debacle with Nathan the other night, the fact that he umm, pooped on the floor.  John was downstairs while this was going on and all he heard was cheering.  He knew we were trying the potty and he came running upstairs to celebrate the success, so you can imagine his surprise when he walked into a poop filled room.  He looked at me like, umm, WHAT are you cheering about???  The answer- some pee got in the potty AND he didn't smear the poop!

4.  John and I were outside the other night when John looked up and saw Nathan in our bedroom window.  Which is over our bed.  And this was after bedtime.  He was standing there pouring water from my water glass onto my pillow.  We were tickled pink.  Hey, he opened the door all by himself!  We love ALL developmental milestones around here!

5.  Jack came home from being out with a family member who gave him contraband ice cream the other night (he is still dairy free).  He puked in the bathtub- thank God; because after he got rid of the dairy we avoided the usual resulting hyperactivity and he slept through the night.

6. I am secretly thrilled every time Nathan throws a temper tantrum- he knows what he wants, and he is passionate enough about it to make his feelings really well known.  We are ecstatic with any and all communication attempts, even if they involve him screaming hysterically, throwing himself on the ground and yelling "bad, bad, bad" for good measure

And now some visual accomplishments:

7.  They are sitting near each other- and Jack isn't trying to sit on him; and Nate isn't hitting Jack! All parents can appreciate this to some extent, however, in my boys' case, this has happened maybe 4 times- like, ever

8.  Jack saw this crab on his school field trip.  He was able to walk away from it without having a meltdown.  He told every single person he saw for the rest of the day ALL about it, but he did not have a meltdown.  I cannot state more emphatically how huge this was for Jack.  Score!

9.  This one serves a double duty- he let me cut his hair.  AND he's looking at the camera!!!!  Huge accomplishment for a kiddo with autism on both counts.

10.  Nate uses an app called "choice board" on the IPAD.  He is now choosing several items correctly when he wants them (he touches them, they enlarge on the screen, he touches them again and my voice says the word- that's his way of asking for something- and food is the main motivator for him)

Is it all complete and utter CRAP??? Absofreakinglutely!  Do I care?  If he asks appropriately for these things?  Nope.  That's right, I will let my kid eaten gluten and dairy free JUNK if he communicates with me.  Hearing my own voice say "chip" is music to my ears. 

The funniest part of all of this to me is that these sound like perfectly normal things to be proud of now.  The first time Jack smeared poop when he was a little over 2 years old I thought I would DIE.  Now if Nate does it, I sigh, grab the lysol wipes and investigate just how far he got in the process without missing a beat.  John's job is to toss him in the shower and squirt soap in his general vicinity.  Hey, it's teamwork.

Treading Water

As we enter summer "vacation", my main focus has been on finding places for the boys to be while I work, making sure they're taken care of, and trying to afford it all.  I am revisiting some old supplements that I don't feel like I tried for long enough and reading about some new ones.  My autism book stack is getting higher by the day. 

I read and read and pray that one day I am going to find that magical solution for Nate.  That some day he is just going to open up his mouth and start talking.  That the stimming will calm and I'll be able to talk to him like any other kid.  There is so much going on in there, it just feels like everything he wants to say is trapped.  I don't know what more I can do for him right now.  So I guess I am feeling trapped too.  And inadequate as usual.  I am watching babies born almost two years after him pass him by verbally.  And while it hurts, I marvel at their development.  I know their parents are thankful for it, but do they get just how much of a miracle it is?  It's something I appreciate seeing more than I can express.

I am trying to rally myself for another round of searching.  And implementing.  Sometimes I am just so damned tired with just what we are already doing.  And yet I feel that same sense of panic creeping in that I am not "figuring this out."  I mean, what if there is nothing to figure out?  What if this is just the way it's going to be?  That thought terrifies me.  And it's one that I am trying to reconcile myself to, just in case. 

In the meantime, I guess we really are just treading water.  Surviving, doing a lot of running around, going to appointments, smiling and saying the kids are doing well, and coming home at the end of the day, collapsing, and feeling discouraged.  It's a dance we have honed over time, we are getting pretty good at it.

Worth It

You know, when I signed Nathan up for Cisco Center initially, it was because I needed daycare, and because they were a special needs facility.  And Nathan liked it fine, he was always ready to come home in the evenings, but I think that's a good thing.  Everyone seemed nice, and I have been happy with my decision so far.

For the past week, Nathan has been going to Cisco for full days as his ECI class is out until extended school year starts on July 8th.  I have been very stressed out about the money- it costs $500 a week to send a child there full time.  And as I expressed to Cisco, who runs the center today, I get why it costs that much.  My child needs more individualized attention, he needs sensory stimulation, he needs many accomodations.  I mean, how many places have multiple swings upstairs, and an OT and speech therapist on staff?  Cisco Center is also meant to be more of a school than a daycare, so that also justifies the cost. They have a curriculum, and they have weekly themes.  I know that when Nate comes home with sand in his hair it's beach week!  It's just that constant dilemma of special needs children needing so many things, and these things being more expensive, because, well, they need to be.  It is going to be very difficult to keep Nate in this situation for the summer.  I have applied for grants, but won't know the outcome until probably August.  Today Cisco suggested sponsorship, asking people to sponsor Nate for a certain amount each month- it's a tax deductible/donation type situation.  But while it sounds like a great idea in theory, everyone has expenses and I just don't think it's very realistic right now. 

Here is what I know.  He LOVES it there.  John and I are both pretty sure that he was trying to say cisco this morning multiple times, and at one point we heard "fun" in there too.  Yes, this is the morning after I was talking about his regression.  I know.  Almost every day I pick him up he is soaking wet (with water)- at first I was like, what??  But really this is because they are providing him with the sensory play that he craves and needs- outdoor water play.  I know how Nate is- came downstairs from putting him to bed tonight and found my water glass on it's side and water all over the floor.  I didn't wonder for one second how that happened- he's my water boy, loves to watch water pour, move, drip.  It's a visual stim for him.  They made "donuts for dads" this week.  When I dropped Nate off this morning, he walked right over, sat at the table and was given the task of "shaker"- shaking the cooked donuts in a bag of powdered sugar to coat them.  And the bag was labeled "gluten free", so he only had contact with the gluten free donuts.

And these are just the benefits for him.  Last Friday he and I attended the end of year party at the center.  I met many of the parents of the kids in Nate's ECI classroom.  Made connections that will likely be very important for him and for me.  Connections with other moms that are walking in shoes very similar to mine. 

Cisco contacted myself and several parents a few weeks ago asking us if we would be interested in testing a communication app for children with autism.  The software developer had contacted him, I am guessng because it is a designated special needs center.  The requirement to do the testing was to have an ipad, so I said sure.  Unfortunately, it needed to be an ipad2 or newer, and ours is a 1 (which is perfectly fine for most of the apps we use) so I told him we were out.  Then the developer comes back and says he will loan me a new ipad with retina scan while we are working with the software and then donate it to Cisco center.  Several moms and I spent about an hour and a half walking through the app today (it's not on the market at all yet), not just learning how to use it, but offering the developer suggestions on how it could be made more user friendly and relevant for our children.  It was pretty cool. The other cool thing was that when I started offering suggestions, the other moms were nodding their heads and agreeing. For instance, there were about 200 possible things a child could find and touch in order to communicate their needs.  I was sitting there thinking that this was way too much for Nate to sort through right now, that he needed one screen of maybe 10 things at most.  When the other moms agreed, it made me realize that in this center, Nate is not "the most behind".  He is truly with peers.  And that's a very unique thing to find a mile from your house! 

So somehow, we are going to make this happen for the summer.  Don't get me wrong, if the grants come through, our net cost will not be horrible, it's just the upfront cost that is getting us.  But....I have never seen Nate excited to go somewhere before.  I have not seen him in a situation where he really seems to belong before.  As a parent of a special needs child, this is priceless. 

Trial By Field Trip

I took the day off today (one of my FEW remaining vacation days) to go on Jack's field trip to a place called Camp Woodlands.  First of all, I should explain that for every field trip I am "cordially invited" by the staff of Jack's school.  And I get it.  It would really be a lot to ask of a parent volunteer to have a group of kids that included Jack- he needs so much supervision, and chasing, and...yeah, he needs a lot.

I won't lie and say I was looking forward to this day.  I was looking forward to time with Jack, and I was looking forward to the neat activities, but any time Jack is in a new environment, especially one with lots of environmental stimuli and structured activities, it is extremely challenging to keep him engaged, and to make him understand how to behave.  We don't have the luxury of me "giving him a look" and expecting him to understand to stop a behavior or be quiet.  He just doesn't register that type of change in facial expression. 

With all of this in mind, I will say that there were some victories in today's field trip.  Jack loved many of the activities, which ranged from catching fish in a net, to a ride in a row boat (Jack went by himself with two other students and a parent, and even led them in a rousing chorus of row, row, row your boat), to digging for bugs with Mr. Kevin, songs in front of a camp fire, and learning about trees.  He cooperated for at least the first few activities.  He was really ready to be done after lunch and had a mini meltdown at the first activity after lunch, with a burst of inappropriate behaviors, shouting and trying to run away.  I took him for a walk, even took him behind some trees and spun him around some (which is calming), picked him up and swung him.  Did not help much.  He had similar issues at the first part of the tree activity, where the kids were supposed to collect different tree "seeds"- pinecones, acorns, etc in buckets and see how many they could find.  The kids picked them up, Jack took them out of their buckets and threw them back.  There was a trailer in the area and all he wanted to do was climb on it. 

OK, so here's the thing.  Much of this is about me.  Yes, everyone and their brother noticed that Jack's behaviors are difficult, believe me, he stood out today.  What do I expect?  He is on the spectrum, he has ADHD (which is becoming a more and more clear issue each day).  He is going to have a very difficult time with things like this.  There is a reason why he has a full time aid in school, and that is a familiar environment.  I know all of this on an intellectual level.  But I am embarrassed.  Really really embarrassed.  Most of these parents don't know what is going on with Jack- I feel like they just think he is being naughty.  That his mom is right there and just can't calm him or make him behave.  You have to really watch him- he CAN'T HELP IT.  Even when he is really trying to listen, he just can't do it.  Even though I get all of this, it is frustrating, and for someone like me, who has been quite the rule follower her whole life, it is intolerable to me to see people looking at my kid in a disapproving way.  Some parents are better than others, some people are more tolerant than others.  It was a long day to endure with Jack- one that tried every ounce of patience that I have, and one that made me want to stand on a stump several times and scream "he's not naughty people, he is sensory overloaded!!!!"."  I mean, come on, he climbed on the forbidden trailer at one point and informed me that he was activating his "sensory integrator". 

This is the darned blue crab that he saw at the first activity- he could think of little else all day and tried to run away to see the crab on multiple occasions....

Digging for bugs....

Here are the positive things I take from today.  I was paired with another nurse mommy- we talked shop a bit, she was interested in my job and working from home.  She was empathetic and picked up slack with the other kids when I was chasing Jack.  Several of the parent "teachers" were just as understanding, although I could tell that wasn't the case for all of them.  And the other kids- Jack is well loved among many of his peers, and as always, especially the girls.  All of these little mothers just crack me up.  But it's not just the girls, there are some great little boys too.  That really touches me.  Kids wanted him to sit with them, on the bus, at lunch, etc. 

Jack and his buddy on the ride home....

So we both survived.  And we both learned some things.  I guess that would make the day a success.  However, now, I am ready to go sleep- for a long long time.

An Awesome 6th Birthday

My boy.  Jack did absolutely fabulously today.  It was the best birthday I can remember for one of the boys in a long time, maybe ever.  It was the first time for several things- first time Jack basically "created" his own guest list, and the first time we had a party away from home.  Best. thing. ever.  Instead of running around like a fool cleaning the house last night, I was wrapping gifts.  Instead of decorating all morning, I had a nice snuggle with the birthday boy and watched him unwrap gifts.  Awesome. 

As always, I tried to keep Jack's party pretty small.  New strategy this year and it did not work :).  We had his party on the Eastern Shore in Maryland, about 45 minutes from home, at a horse farm.  I let him invite the kids from class that he wanted to come, figuring maybe two or three of them would make the trip, then our family friends.  One kid RSVP'd no- we had close to 20 kids there today including siblings.  I was slightly worried for Jack, but we were outside the whole time and there really was no noise factor to overwhelm him.  And he had an easy exit if he needed a break.

This farm- it's incredible.  It is called Dominic's Farm in Queenstown, MD and it has several very special aspects to it. 

http://www.dominicsfarm.com/

Dominic is the name of the owners' son.  He has autism and is grown.  He still comes home and mows the lawns every weekend.  As a result, the owner, who runs the parties, is incredibly sensitive to the needs of kids on the spectrum and adjusts things accordingly.  For instance, she had us come out a few weeks ago and spent about an hour taking us around, introducing Jack to the animals.  And he remembered every single name- has been talking about riding on Zach ever since (horse).  She keeps the "structure" very flexible.  And because it's such an open area, any type of behavioral issues from either boy are much less glaring.  Nathan ran around shaking a rope for a good 20 minutes and stimming, and I don't think anyone noticed.  Although to be honest, I really just didn't care as long as he was happy. 

This is Jack sitting beautifully listening to Miss Kathy talk about being careful around the animals.

Jack and Sean watching Angry birds while waiting to ride

Mommy's proudest moments today:
- Jack handled letting other kids ride the horse like a champ- no meltdowns at all. 
- Jack decided he did not want the birthday song and with the help of his OT made it very well known- he usually cries at the end of the song, all of the clapping really bothers him, and he recognized this and avoided it. 

Most special moment- I was walking to the fields with the boys, holding Nate's hand, and Jack was walking next to us.  One minute I looked down and Jack was holding Nate's other hand.  I cannot stress enough what a big deal this was.  This has never ever happened before, it was such a wonderful sign of affection and it still brings tears to my eyes.

I am proud of myself.  I realized as I sat down to write this today that I was more at ease with the boys and their behaviors today than I have ever been.  I did not offer one explanation for either of their actions.  Now, they were both very very good, but as I said, Nate was shaking rope and running laps for a good part of the party.  Jack's anxiety was very obvious at times and I am sure that some people wondered why he opted out of the birthday song.  I felt no need to explain.  I don't think I uttered the word autism all day, except when talking to the owner of the farm about treatment options before the party.  This is a huge first for ME. 

Hilary Clinton said it takes a village to raise a child.  That's one child, and I assume this child is not on the spectrum.  It takes a lot more than that to raise two children on the spectrum.  And damn, we have built one Hell of a village over the last several years!  I looked around today and behind the kids and parents from Jack's class saw some of the most caring supportive people I have ever known.  My mom and dad, my little sister, John's brother, some of my very best friends- Joann and Helen and their families, another special needs family we have connected with who understands our life like no one else ever could, a family from the boys' OT practice.  Preschool friends who Jack actually connected with back then- which was huge back then.  Jack's OT made the trip to see him- she has been working with him for three years now and has earned that gorgeous Jack smile-  not the regular cute smile, but the one reserved for people he really loves.  We missed Jack's mimi, one of his most favorite people, very very much.  She has been an invaluable support to our family during our "rebuilding" process, and Jack just LOVES her.  But we will see her tomorrow.  All of these people are here for the boys, here for our family, and their presence made Jack, and frankly me and John feel secure enough to really let our guard down and have a great time.  I know that Jack will never forget this experience- and all John and I could do for most of the party was grin at each other like idiots, because we knew we kicked some serious butt on the party front today and our little boy was thrilled.

How About Action??

Here we are again- Autism Awareness Month, and more specifically today is the "day".  I feel much much differently about it than I did last year.  I feel much more like a "down in the trenches" autism mom, more seasoned, more "aware".  Aware of the kids' needs, the costs involved, and the barriers involved.  Our family has been through it, learned more than we ever could have imagined, and adopted a very different way of living in order to accommodate our kiddos.  Bottom line- WE REALLY GET IT.  And because of this, I am no longer content to "celebrate" World Autism Awareness Day.

Don't get me wrong, it's very important for society to acknowledge this growing (exploding) trend of autism diagnoses.  I am glad that any type of Autism Awareness Day exists.  It's just not enough.  I mean, light everything up blue (pretty), buy jewelry and t-shirts (especially do that since some of the money likely goes to research), but don't stop there.  Here are some really very minor ways you can actually contribute to the cause:
http://www.tacanow.org/ways-to-help/autism-awareness/

I am a big fan of TACA.  Talk about Curing Autism.  I think some people hear this and assume that they think autism is like the plague, something to be eradicated.  But as I have been to more and more meetings I have come to see that the goal (right now) is to find ways to alleviate the symptoms that disturb our children, to help them succeed to the best of their abilities without their sensory or attention or communication issues getting in the way.  And yes, it does involve medical intervention.  And behavioral intervention.  This organization also provides invaluable resources for parents, such as information on any tax benefits available to parents of autistic children (not many) or a full list of brand names of items that are gluten and casein free, or a comprehensive list of providers all over the country.  And support, which is of course, huge. 

TACA is calling this Autism Action Month, and I am on board with that.  We all need to take action- to spread awareness, to show acceptance and to raise funds for treatments, as families are weighed down tremendously by the financial implications of having a child with autism.  Or two.  What are we doing as a family for Autism Action Month?  Well, we raise awareness every time we go out in public.  But John and I are attending an autism conference in Pennsylvania this weekend.  We are educating ourselves on the best ways to help our boys.  And we will continue to attend TACA meetings, and to befriend other autism parents.  And for me, one of my biggest actions is this blog.  Anyone who reads my blog regularly and truly listens has become, by default, autism aware.  Now, I am challenging you to take action- donate, walk in a walk, or run in a run, or simply invite an autistic child over to play (mom can stay :-)).  You have no idea how much that would mean to the child and especially to the parent.  Acceptance isn't just about refraining from scowling when an autistic child has a meltdown in public (although that's a great start), it's about welcoming individuals with autism into your lives.

Beware the Autism Mom!

A friend of mine reposted this on facebook earlier this week.  I have read it MANY times before, but never before have I felt so much like I have become this person.  This mom.  And I am not ashamed, I just feel as though I have been through my initiation and I am no longer willing to take bullshit.  I have not felt like hiding because of my kids in a long time.  We are who we are- take that!

Last weekend I took the boys to the mall to get some spring clothes for Jack.  He was in a bad way that day, hadn't slept real well and was having horrific poop issues.  Which is, like for many autism families, an ongoing saga in our house.  I smelled something while I was trying to grab as many t-shirts and pairs of shorts as possible before the inevitable meltdown that comes with being in a busy place doing something that he would never choose to do, when I smelled it.  I looked at Jack and he said, "no really, I just farted", then he burst into tears.  I felt terrible for him, as I know how sensory related this all is, that it really isn't his fault.  We are standing at the checkout, he is hitting every button on the credit card machine, he is talking talking talking.  I physically removed his hands from the machine about 10 times, we had to keep redoing the transaction.  Meanwhile Nate is blissfully sleeping in the stroller (thank God for small miracles).  The cashier was making faces at us, I could tell she was annoyed.  The cashier standing next to her smiled at me and said "don't worry, I know what's it's like, I had two boys too".  I smiled back, understanding that this woman was trying to show empathy- however this did not stop me from snapping in that moment.  That part I feel a LITTLE bad about.  I responded, "oh, did they both have autism too?"  It wasn't directed at the nice woman, it was directed at the biotch who was making me immensely uncomfortable with her looks.  Enter awkward silence.  So I grinned, told Jack it was time to go and headed to the bathroom to deal with the disaster I knew was awaiting me.  Let's just say we drove home with Jack going commando.  Hey, at least most of the spring shopping is done.

The below post is from the autism mom blog Laughing Through Tears.  It is such a perfect representation of how I feel so often now that I just had to share. 

We’ve all been there.  Every autism mom has had at least one encounter with some insensitive jackass who insulted our children or criticized our parenting.  It might have been the perfectly groomed soccer mom who said your child was merely spoiled, or maybe the old biddy that told you to take your screaming kid outside even though you were already dragging him out the door in a Fireman Carry, or maybe just some random mean guy who muttered, “This is why I hate kids” under his breath while your child happily flapped past him.
Usually we just have to mention “autism” and the critics slink away, embarrassed and with their tails between their legs, but every now and then you meet somebody who is such a huge asshole they don’t care if your kid is autistic, they just care that your child’s noise/stim/existence is annoying to them, and they don’t hesitate to tell you about how obnoxious your child is and what a terrible job you’re doing raising him.
Sometimes their callousness shocks us silent, and we sit in the car afterward, thinking of all the retorts we could have made.  Sometimes we take the higher ground and walk away, and sometimes we dig in and defend ourselves. (And sometimes we defend ourselves loudly and with many obscenities, but that bitch in the bookstore deserved it!)
These people who attack us are horrible because they have no empathy.  They’re shallow people who probably lead miserable lives devoid of depth and meaning.  They need to learn compassion and respect, but mostly they need to learn to fear us, because autism moms are not to be trifled with.
 Top Five Reasons You Should Never Piss Off an Autism Mom
Five.  We’re Already on the Defensive
What?  You think you’re the first person to think I’m a bad mother? Get in line.  People have been assuming I’m a bad mother for the last five years.  I chew up people who think I’m a bad parent for breakfast. You think there’s something wrong with my kid?  No shit, Sherlock – this panel of physicians and psychologists agrees with you.  Tell us something we don’t know.  Have something new and clever to add?  No? NO?  I didn’t think so…
In other words, we have experience with assholes like you.
Four.  We Are Not Socially Well-Adjusted
We were real people once, and we will be real people again someday, but right now we’re living on the fringe of polite society.  We have cut ties and discarded the family and friends who couldn’t handle our situation.  We all suffer from severe PTSD. Our houses are messy, our surfaces are sticky, and we know the words to way too many Wiggles songs. We clean up disasters that you couldn’t even begin to contemplate.  We live in semi-isolation, trying to have philosophical conversations with children who only know 18 words.  We wear yoga pants all day. Our lives are not like other people’s lives. Do you really want to make us angry? Or do you want to give us a really really wide berth and back away slowly because you’re scared of what we might do if we snap?  Yes.  Good choice.
Three. We Know How to Fight
Autism moms know how to fight because we practice. We fight all day long.  We fight with doctors about treatment, and then we fight with insurance companies to get it paid for.  We fight with the state over services and we fight with schools about our IEPs.  We fight with our families who won’t come to visit us anymore and we fight with our husbands to let off steam from all the other fighting we’re constantly doing.  We fight with our children to make them keep their pants on in public.   Do you think for a second that we would hesitate to fight with a complete stranger who was totally asking for it?
Two.  We’re Already Angry
Autism moms carry huge amounts of unprocessed rage just below the surface.  We’re mad at god or the universe or fate or whatever it is out there that gave our children autism.  We are furious at the cards we were dealt and indignant that such a horrible thing had to happen to our children.  We are angry about the loss of the child we were supposed to have, and we never truly stop mourning.  We’re angry at the doctors who didn’t catch it early enough and also at the doctors who did.  We hold a grudge against anybody who ever failed us as we tried to make sense of this chaos, and we’re also furious at ourselves, because we constantly feel like we’re not doing enough to help and we’re secretly afraid that it might somehow be our fault in the first place.  We are already walking bundles of resentment…do you want to be the straw that breaks the camel’s back?
One. We’re Sleep Deprived
Some of us haven’t had a good night’s sleep in years.  Between the stress, depression, anxiety, and the kid who wakes up screaming for popsicles at 3 a.m., we’re all beyond exhausted.  We’re muddled and short-tempered and irrational and crazy.  Like ax murderer crazy. Like Mel Gibson crazy. There are all sorts of studies linking sleep deprivation to psychosis and that would probably hold up in court if I decided to assault you.  Keep that in mind the next time you fail to keep your opinions to yourself, and beware the autism mom.


AMEN fellow blogger, A-MEN.