When Your Child Is Special

While I am a special needs mom, that's not what I mean today.

I am talking about how special my Nate is- what an amazing little individual I have in my life.  I was sitting with him today out at lunch after a particularly successful haircut and I just had to stop myself for a minute and stare.  He is so gorgeous.  Sometimes it feels like every single thing he does has just a little magic involved 

He is just a perfect little soul.

There is an element of this feeling of awe that DOES involve autism.  I am not one of those parents who counts autism as a blessing.  But it did give me a gift.  It gave me the gift of seeing my son "return" to me.  With the absolute devastation that came when he stopped talking to us, stopped looking at us, started banging his head against the walls, came the complete joy of seeing him respond to his name, attempt to say words, jump on his exercise ball rather than engaging in self harm..

Sometimes it really does take losing something to understand just how precious it is.  Jack was an "early talker".  I can still remember a mom in our play group looking at me completely deadpan and saying, "did your 15 month old just say vacuum???  excuse me while I go shoot myself in the head!"  (she's probably cracking up right now).  I was a first time mom, I completely took Jack's speech for granted- I had no idea just how amazing it was.  Honestly, I would've been happy if he would've simmered down for a minute- pretty much all the time.

And Nate started out slower, but developmentally appropriate.  He was still on track when he received his vaccines in June at about 16 months.  I am not trying to blame vaccines, but it was at that visit that he received a standard developmental screening- he was pointing, he had enough words, he was playing with toys.  And then he wasn't.  I guess you can take that however you want.

When your child, who is supposed to be exploding with new developments, loses the skills he has and checks out- there just isn't even a word that encompasses those feelings.  Terror- maybe.  But grief is in that mix, so I guess not.  Let's just say it's life altering.

Anyway, I don't want to relive all of that, but it's kind of crucial to the story.  In regaining skills, starting to explore his world, interacting with those around him, Nate has become my own little personal daily miracle.  Every single thing he does amazes me- and I can read him like very few moms can read their kids.  Because we had to do it without words for YEARS.  It was actually a huge challenge when he started ABA, me withholding things and waiting for the word, because I could literally always see in his eyes what he wanted and needed.  We had developed our own system, and I would have to say I was the only one who could read him like this.

I am starting to be able to share that with others, because he can now go into school and communicate his needs- generally only the very basic ones, but it's such a step up...apparently last week at school, he went to the bathroom while in gym and walked down the hall announcing to everyone "I pee, I pee."  Seeing this little personality that I have always known was there emerge and be noticeable to those around him is just thrilling.  

He has spunk, he has a little attitude, and I'm convinced that his sense of humor is just as sarcastic as his mama's.  The amount of eye rolling that goes on in this house is just hilarious.  His curiousity is starting to really emerge- he will literally move my mouth just to see me talk and watch how I form my words- this is so cool to see...

He is starting to "joke".  He finds himself (and his ability to make others do things) hilarious.  He is beyond loved everywhere he goes- he has his therapists, teachers, and family wrapped around his little finger.

In short, this little boy is my hero.  I am so proud of how far he has come, and I am so hopeful about where he is headed.  I could not have said any of that two years ago.  I was too absorbed in my own grief to realize how many wonderful moments were headed my way.  I am learning, through this child to appreciate the little moments in a way I never understood before.  I have learned that every single step for him is huge, and that he can go way further than I had realized...

I LOVE this boy!!!!  He brightens every single day of my life.  

A Gift

I am not someone who believes that my children are just “differently abled”.  Maybe someday, if they reach a point where I don’t watch them continuously struggle to live in this world of ours, I will have a different perspective, but right now, for the most part I see confusion, fear, anger and frustration.  And I worry.  And worry.  And worry some more, about their futures.  Every single thing we do, every single day is challenging.  Take getting both boys in the car to take Nate to school in the morning- the minute we turn on the car, Jack starts in with, mom, you will turn the radio off when you take Nate in right?  (he sits in the car for about 2 minutes each morning while I take Nate in- don’t judge, it’s a private safe parking lot).  The one time I forgot to turn the radio off, he rolled down the window and screamed like a maniac until I came out to turn off the radio- he even liked the song, it was just the concept that the next song might bother him.  If there is traffic, he screams and says he wants me to drive through the cars.  If I turn to go a different way to avoid traffic, Nate screams because I have deviated from the routine.  So I am saying, little things in life are a big deal for us- if Jack could finally master buckling his seatbelt I might bust out into a chorus of Hallelujah!  No, seriously.

So when we face a week like last week- school parties, social events, trick or treating…..it can look pretty overwhelming to say the least.  Jack is somewhat used to the routine these days- he had his issues with anxiety- he cried if I moved more than a step away from him at the Cisco Center party because he was afraid I was going to leave him there (since he stays there sometimes), he yelled an awful lot during trick or treating (inappropriate yelling- like I don’t want that candy, give me two, or if they’re not home I’ll shoot).  But he made it- we went with a largish group of friends and family and he did a pretty good job for him.

Halloween with Nathan in the past has been hellish.  His first Halloween was fine (other than another upper respiratory infection and a considerable number of nebs that day).  

The next year was just….awful.  I remember my mother in law turning to me at one point and asking, is he ever happy?  That is kind of seared into my memory mainly because it was one of the first times I realized how miserable he was- but only when we took him out of his usual environment.  He cried the entire time, and one of us had to bring him home after a few houses.  He had always been my "laid back, easy going" kiddo.  This happened right after his initial diagnosis- it was a whole new ballgame.

The next year I didn’t even attempt a costume- I got him an “owl” winter hat and bought a cape on etsy, the least invasive thing I could think of.  You can see, this wasn’t a big hit either.  Not sure how far he made it that year- kinda blocked that one out.

Last year, what can I say?  The boy LOVED his costume.  Did he trick or treat?  No.  But he DID sit in his stroller and tolerate the other kids trick or treating.  The year before, every time the stroller stopped he went into a meltdown.  Last year, he pretty much hung out.  He definitely had no concept of what we were doing, but he was ok with it.

This year was amazing!  Nathan was an active participant in all things Halloween.  It was like a two week extravaganza of tangible progress.  Holidays often make progress seem more obvious, since it is easier to recall what Nate was doing on that exact date last year, more so than just any other day. 

He picked a pumpkin at the pumpkin patch, he petted the animals at the petting zoo.  When I showed up at his school (I planned his school party) he was nothing but happy to see me- content to stay and participate in class, no meltdowns.  Halloween was definitely the highlight though.  After school, we first went to trunk-or treat at Cisco Center, which if you have never seen it- cars line up with their trunks facing the same way, they decorate their trunks and hand out treats to the kids as they walk from car to car.  Nate was stopping with Jack at each car- next I looked and he was choosing an item independently.   I found something with Mickey Mouse on it, and he was super happy.  He finished that, participated in the party inside (actually did better than his big brother), and then we went home to get ready for trick or treating.  I brought the stroller- I had no idea what to expect from him this year, but if I have learned one thing in the past 4 years, it’s that it is much better to prepare for the meltdown and have a way to “contain” him, than to wing it and hope for the best.  Kind of like taking an umbrella on a cloudy day.  And he did use the stroller once he was tired.  But first he trick or treated with the other kids for a solid hour.  Now, either mommy or daddy held his hand, and walked to the door with him, and he didn’t say trick or treat (although I SWEAR he tried a few times), but he did stop at each door, he did physically reach and pick a treat each time, and he did put it in his bag.  And he would say bye bye (when I told him to).  And me? I spent the entire evening in tears, and probably annoying the crap out of all of our neighbors, friends, and Nate’s grandparents .  “Did you see that??  He did it again!  I can’t believe it!”.  I almost can’t stand it it makes me so happy.  He was calm, he was engaged, and he was interested in what was going on.  This is not a small thing- this is a huge thing.  It was amazing, and one of the best days I can remember in a long time. 

So while I can’t say at this point in my boys’ lives that I consider autism “a gift”, as some other parents express, I can say that Friday WAS a gift, and it was one that I wouldn’t have appreciated nearly as much if autism was not a part of our lives

Giddy Mommy

I am giddy today.  There is no huge reason, just a bunch of little ones.  Things like- every article of clothing I took to the consignment store on my lunch break was accepted except two.  Victory.  Jack got a report card and is progressing nicely- even on level for his grade in most areas.  My son is just so smart.  When I think of all of the challenges he faces with fixations on some things, lack of focus on others, sensory and fine motor issues, it hits me just how smart he must be.  If he can keep up with the other kids through all of that…..he’s just amazing.

Then I got to take him to swim, just the two of us tonight.  He was swimming laps beautifully, he let his instructor THROW him in the water, he jumped in several times on his own, dove for rings, and dove into the pool for the first time (with a little assistance).  These swim lessons are so wonderful for him- his self-confidence is just through the roof, and he never ever complains about going.  He loves it.

Then there’s Nate.  As always, I will qualify these developments with the statement “he is having a good week”.  His study doctor called just to check up on him this morning (no I am not kidding) and when I told her about this stuff she made sure to tell me that they could not “prove” that the Aricept is causing any of this.  I told her I was totally aware of that, and aware that he could lose these things tomorrow, but that today, I’m really really happy.  She said that is just the perfect way to go about this. 

So here is what we are seeing:

Bad:  sleep disturbances- he has been up from 1:30 to 4am for the past two nights- blech

Good: 

He is majorly opinionated and fighting going to bed in his own bed every night- and yes this does too go in the good column- in our world anyway.

He regained “go”, “chip”, and a couple of other words in the past few days.

He has learned how to give kisses, to mommy only, but it is the cutest thing ever and he does it whenever I ask- what more could a mom want?

He started clapping his hands today for the first time in close to a year.

Bear with me, I edited this video- but right now it's still long- the end is worth it- promise!!

 

He is choosing his food- I hold out two items and he (with his pointer finger) shows me which one he wants.

That’s all in the last week.  Once again all I will say is- this is a good week.  Oh, and everyone- please pray, ok?

Then there is my husband- I was trying at dinner to get Nate to clap, and of course he wouldn’t.  I was afraid John was going to think I was making it up.  Instead, while Jack and I were at swim class, he sent a video of him working with Nate to get him to clap- and he did it!  John was so patient, and tenacious.  He is a good autism daddy.

Yay family!!!!!

Survival Tactics For a Successful Birthday Party Experience...

About two weeks ago at the bus stop one of the parents invited Jack to our little neighbor friend’s birthday party.  As any autism mom will tell you, two simultaneous thoughts went through my mind “that is SO nice of them to include him”  and “crap”.  There are few social activities harder than a birthday party for a young child with autism.  We had dinner with another autism family on Saturday night and I told the mom, “we have a birthday party tomorrow.”  Her response was “ughhh”.  I am not alone J

Noise- check, crowds- check, waiting- check, looking at a pile of presents and accepting that they are not for you- roger that.

I refuse to allow MY fears about Jack’s reactions at a party to get in the way of him attending.  As long as we can find a work around, I want him to go, and I am happy to take him.  But I don’t enjoy it.  At all. 

So I start prepping him well ahead of time.  First I ask if he wants to go- because if he says no, why am I going through all of this?  Of course he never says no, he’s a kid!  After this is established the true work begins.  The quizzing- “whose birthday is it Jack?”  “do we touch other kids’ presents?”  “do we open other kids’ presents?”  “do we try to eat cake before they sing the birthday song?”  “do we scream during the birthday song?”  “do we rush the mom for cake when the song ends (or bite her ankles- kidding)?”

You get the point.

There is a reason why social stories are employed for children with autism.  Much of these typical social graces just do not come naturally to Jack, even though his heart is always in the right place.  But talking definitely helps.

And so on Sunday we went to the birthday party.  I am constantly making a contingency plan in case of a meltdown- they live a block and a half away but I drove in case we needed to make a quick escape. I showed Jack the present multiple times and quizzed him- whose is this?  Do we open it?  Do we take it?  When we got to the party all of the kids were jumping in the bounce house in the back yard.  Jack did not want to join, which is not that unusual, he needs to kind of “feel out” his surroundings at first, so he came inside with me to where the grown-ups were.  Oh, and did I mention there were two hermit crabs?  Really there’s nothing else to the story- kidding.  As always, there was some well-meaning adult who kept repeating things like “wow, he really loves hermit crabs”  or “why doesn’t he want to talk about anything but hermit crabs?”  or “why don’t you get him one?”  Because I want to sleep someday, that’s why.  I offered no explanation and just practiced my new routine, smile and nod, smile and nod. 

His obsession was reignited for the day- he was glued to the tank for quite a while, but with some prompting he stopped pounding on the glass and trying to take them out- victory.  The mom called everyone down to the basement, they had a small exotic animal "show“ for the kids.  The first thing the teacher did was show us how she would signal us to be quiet.  By clapping her hands really loudly.  For the love of God woman.  Luckily Jack just quietly clamped his hands over his ears at that point, didn’t scream or anything.  Unfortunately, it was a crowd of small children and this clapping was repeated no less than fifteen times- he was not amused.  Then she explained that for the duration of the “show” (about an hour), the kids were to sit in a circle, “crisscross applesauce” with hands in their laps so they could see the animals.  Oh boy.  I sat down directly behind Jack and whispered the reminders over and over again.  He. Did. Beautifully.  I was really really proud of him.  Did he have times when he drove the woman crazy with questions?  Based on the fact that at one point she turned to him and said “when I am done with the presentation you may ask me 3 questions”, I’m going to have to go with yes. Frankly, by her reaction to some of the things he was asking, he may have been over her head, ha.  He knows so many facts about “creatures” that I wouldn’t be surprised if this was the case.  He only asked to leave for a “break” once- we headed up to see the hermit crabs for a little breather and headed back down.  He skipped the turtle races (the kids were divided into teams- it was really cute) at the end and hung out eating gummy worms.  I was ok with that, although I was a bit disappointed that he didn’t really try to interact with the kids at the party at all, until the last 15 or so minutes. 

Then it was cake time.  That moment that every parent with a sensory sensitive child dreads, and I’m guessing that if we dread it, our children dread it even more.  Jack would not allow the birthday song to be sung at his party earlier this year, which was fine.  Some well- meaning soul asked if maybe we could sing “For He’s a Jolly Good Fellow” instead, ummm, that’s really not the point.  So instead Jack blew the candles out in silence- someone started to clap and suddenly I was the bionic woman, jumping across the room “noooooooo!!!!!!”  That nipped it in the bud, and the fact that we were at a noisy farm also helped.  In any case, Jack is wise enough at this point to know that he will do better if he goes into another room when the birthday song is sung at another child’s party.  He asks to do it.  So we went outside, and every time someone would try to open the door, he would freak.  He did NOT want to hear the singing or clapping.  The one issue with this strategy is that by the time we come back into the room, there is always a long wait for a piece of cake.  This is hard for any kid, but Jack’s difficulties with self-regulation make it extra challenging for him.  Yesterday, the mom swooped over and just handed me a piece of cake in a covert manner.  I always knew I liked her.  Jack sat on the deck and chatted with three other little boys, which involved “hilarious” jokes about pooping in pants- my perfect boy didn’t quite catch that and looked at the kids like they were morons and said, I poop in the potty.  Sigh.  Love.  Him. 

Twice On The First Day? Really???

Today was a long, long day.  Most importantly it was Jack’s first day of first grade.  He wasn’t “excited” per say, but he wasn’t complaining either, so I consider that a victory.  He was very excited about his Darth Vader lunch box and his Spiderman pencil pouch.  Here are some pictures from this morning:

About an hour after I got him on the bus (in which I made about 10 frantic work calls for that pesky full time job of mine), I had a conference with Nathan’s new teacher- he doesn’t start until Thursday. Nate’s school is about 15 minutes away; the early intervention program doesn’t have a classroom in our home school.   We met for about an hour and it went really well.  He has a new teacher this year, which wasn’t the plan, but it is what it is, and she seems great!  I am excited to get back into the routine and feel much better about this change after our meeting..

After that I ran home, made about 10 more frantic work calls and then the NIH research coordinator called.  We did a 45 minute phone interview in which she asked for all the basics about Nate, and thus far we are good to go.  I have another phone interview next week, then a parent interview at NIH and then the dreaded developmental screening.  I swear to God I am tempted to wear earmuffs and a blindfold this time.  Enough.  But it’s a means to an end, and we’ll do what we have to do. 

At this point it was about 2pm, and I figured I had a good two hours before Jack got home to get some more work done.  And then the phone rang, and, it was Jack’s school.  Any special needs parent will tell you just what kind of effect seeing that number on the caller id can have.  And on the first day??  Sure enough, it was the special educator. However the question was not what I was expecting.  She said “Mrs.. Fury, Jack is insistent that he is supposed to take a different bus this afternoon than he took this morning, so I just wanted to check with you.”  I had just taken a sip of coffee and swear to God I snorted so hard it almost came out my nose.  Before she even went into details, I told her “his bus is number 13, not 223, no matter how many times he tells you otherwise.”  She started laughing, because of course this is exactly what he was insisting,

Jack and I had been debating this for days.  You see, last year, he was on bus 223.  And he loved saying that number, and he loved Mr. Roger, the driver.  When I checked his bus schedule the other day, I discovered that this year he is on bus 13.  The driver this morning introduced himself as “Bob”.  Jack was NOT happy about this.  However I am 100% sure he was totally aware of the change because his reaction had been so strong and we had spent a significant amount of time discussing it.  When the special educator told me what he said I had no doubt that he was simply trying to change his reality.  If he said he still took 223 enough times, then it would be true.  To his credit, he must have been very convincing, because about 5 minutes after the special educator called, the school secretary called with the same question.  By this time I was practically rolling on the floor.  My 6 year old outsmarted the adults!  At least twice!  They physically watched him get off of bus 13 this morning, he even has an aide who walks him from the bus to class and  somehow his insistence made them doubt themselves.  While I didn’t enjoy having my heart jump into my throat- TWICE, it is a great reminder, I have one clever kid!!!!

I am hoping for a little smoother go of it tomorrow.  I have another conference for Nathan, and Jack has his special needs swim lesson after dinner.  It will be busy, but God willing, the teachers will soon be wise to Mr. Jack and his trickery J.

Jack's Turn

First and foremost, I want to say that I am so glad that these two days did not end up being “me time”.  While I am still desperately in need of this, the special time I have had with each of my boys, Nate on Thursday, and Jack today, is irreplaceable.  When I look at pictures from today and realize just how big Jack is getting it’s just so bittersweet.  I mean, yes, I’m short, I know, but he is really gaining on me already!  Ugh….it’s been nice not being the shortest person in the house- for once. 

Today was chock full of a million activities for me and Jack.  We started our day by driving to D.C. for another study visit at Children’s National Medical Center, where I once again reported- no change with memantine.  I feel like if they really want to evaluate his progress they should stop making me fill out the same darned questionnaire and instead follow us down a hallway for maybe 10 minutes.  See how nice and calm and engaged he is---NOT!  That’s all I have to say about that.  Luckily there were no blood draws or other torture during today’s visit aaaannnd…. Our next one isn’t for 6 weeks!  We have graduated!  Here is our celebration….

After this we drove to Target to get school supplies.  I remember when I was younger I loved getting my school supplies- finding the best Trapper Keeper ever and picking out a rad thermos.  Check out Jack’s face- clearly he does not share my enthusiasm.  Any reminders that more “fine motor” or “motor planning” (as he puts it thanks to his OT) activities are headed his way are not welcome.

When we finished this lovely activity, which honestly consisted of him shrieking every time I added a notebook, or pencils, or God forbid SCISSORS to the cart, we headed to the mall for the promised reward (for both of us).  We went to see the movie Planes!!!  And I have to say, if ever you were going to pay the extra buck fifty for 3D, this is the time to do it.  It was a really cool experience.  I have figured out several strategies for making movie going a positive experience for Jack.  First, we get popcorn- no candy, the sugar makes him completely wacko within minutes.  OK, so the popcorn has “dairy” on it, if powdered butter dust can really be considered dairy- this is the least of the evils for Jack.  Second, we sit at the very front of the theater.  I have long since given up on keeping Jack from talking throughout the movie.  If we are in the front, at least it doesn’t disturb anyone.  And believe me, he could not stop talking during this movie.  I have been looking forward to this experience with him forever.  If it wouldn’t have caused incessant flashing I would have taken a million pictures of his face while he was watching the movie.  That was what I was watching- him.  Soooo thrilled.  And he was very good.  I was really proud of him.

Then the sh** hit the fan.  And it was NOT his fault.  We went to the Disney Store, which is right down the hall from the theater when the movie was over.  I had been planning this- we receive reimbursement when we go for study visits and after all of the blood draws he has recently endured, he deserved a reward, so I figured we could pick up one of the planes from the movie.  He did really well in the store, he even helped me pick out a little “Woody” doll for Nathan.  Of course the minute we checked out, he wanted to hold his new plane.  This is not an unreasonable request, and given his obsession with propellers he has really come a long way in terms of being patient with holding a new plane.  When he first gets a new one, he needs to “test” the propeller to ensure that it has adequate spinning speed.  This is highly important to him.  So after we checked out, we stopped at the door of the store and I tried to open the packaging for him.  I expected the usual RIDICULOUS twist ties on the bottom that would take some doing to open.  I WISH.  The GD thing was held in with SCREWS!!! BIG ONES!  Because every parent comes to the Disney Store armed with a screwdriver of course.  I’m sure Jack is the first child ever to have a nuclear meltdown over this particular packaging strategy (sarcasm).  That being said- it was bad.  The mall was crowded and we had to walk quite a distance to find a bench with seating available.  He escalated with every step we took, and unknowingly, according to him, I was smashing to propeller as we walked.  When we finally sat down, I whipped out my keys and tried to fit one into the groove to unscrew what I assumed were short screws (Phillips head even) anchoring the plane.  Wrong answer- this is how long they were

 

WTF Disney Store?!?  What are you trying to do to me???  It took me a good 5 minutes to get each screw out, and by then Jack was basically a puddle on the floor.  And I don’t blame him a bit.  People were staring at us from every direction, and I was to the point in my frustration that I just wanted to stand up and shout “What???  Have you never seen a kid cry before??”  Get over it people.  This is his favorite thing in all the world- he’s 6- and he’s been good all day.  It was bound to happen at some point.  Luckily, once he had “Turbo Dusty” safely in hand and had done the requisite propeller spin (great spin I have to say), he was good to go.  Other than the fact that he almost walked into approximately 50 people in the next hour because he wasn’t watching where he was going.  We got something to eat at a restaurant in the mall, where two little boys asked to see the plane, and then hold it.  He handed it right over!  I was incredibly proud of him for that.  He didn’t even flinch when they gave the propeller a spin.  We headed home after that- this mama is exhausted. 

This day was completely priceless.  The next time his study psychiatrist asks me if I have seen any benefit from the memantine, I am going to say yes.  Because this study has provided Jack and me with some mandatory special mommy-son time every few weeks.  And this time with him is very precious to me.  This may not be the benefit she is hoping for, or the answer she wants- it certainly isn’t the reason I enrolled him in the study- but I’ll take it. 

Mommy and Natey Time

OK, the first part of this will be whining, but I'll get it over with as quickly as possible ok?  Earlier this summer I had scheduled myself to be off of work all week in case the funding for Cisco Center didn't come through.  Then it did, hip hip hooray!  So in a shocking and selfish move, I kept two days all for me- planned to work this mon, tues, wed, and then take off the rest of the week to get organized for the school year, buy school supplies and consign stuff that doesn't fit anyone anymore. 

Well first, I had to schedule a study appointment for Jack- there goes Friday morning, so John and I just decided to get the boys early from Cisco and take them to see Planes in the afternoon ( I am Soooooo excited).  Then last night I hear hacking from Nathan's room; then sneezing, then coughing.  He ended up sleeping with us last night and there was no way I was going to expose a room full of special needs kids to an illness- talk about a death wish, lol, so I kept him home.  There goes Thursday.  I won't deny that no matter how much I love the kids, I was really looking forward to this time.  Like REALLY.  So I was pretty bummed. 

But then Nate and I snuggled in my bed until almost 9, and had a leisurely breakfast, then we played for awhile.  He seemed ok, so we went ahead to the consignment shop and dropped off a bunch of clothing.  And he still seemed fine, so we went to Marshall's, where we spent time just looking at toys and books for him.  He was beside himself with happiness, either over our one on one time or the toys, couldn't quite tell.  When we were done, I plopped him in his seat, walked around, got into mine and turned around to this....

It appears it was the mommy time that he was happy about.  I am sure he was thrilled to be the one and only for a day- this happens so rarely.  This smile completely turned my day around (although honestly, I was already happy).  We went home and ate lunch, and then we both took a nice long nap- he's still sleeping.

 

In a stunning climax, I checked my messages and got the BEST EMAIL EVER from the compounding pharmacy.  They ran Nate's mitochondrial cocktail through our insurance (finally) and guess what???? IT'S COVERED!!!!!!  With a $35 copay.  I. am. ecstatic!!!!!!  So we should be getting a 5 day supply by Monday- the flavor will be chocolate cherry.  If he will take that, then they will send his full prescription.  If not, we'll try another flavor.  Victory is sweet!!! And apparently so are mitochondrial cocktails!

A Happy Day

I have talked in the past about how very small or common accomplishments can feel extraordinary when your child has autism.  Yesterday was chock full of examples of this.  It was a great day, and any parent would feel that way.  I am very proud of my little boys.

First and foremost, Jack went on a field trip with his camp to a swim center and did a great job- also, he told me all about it, we had a full conversation- as in back and forth.  Then, when I brought him home at 3pm, I put on a movie for him and went upstairs to work- he did not interrupt me for over an hour.  That's the first time he has ever done that.  I still can't believe it.

John had to work late last night, so the boys and I were on our own.  As we often do, we went to Chick Fil-A for dinner last night.  My children were angels- well other than Nathan screaming when we first went in- transitions are always rough.  I was allowing Jack to have one of his favorite dietary "cheats", which is a milkshake- usually he gets so excited about it that he starts shouting and often says pretty inappropriate things to the person bringing out the shake- give that to me or I'll shoot, give it now, etc.  As much as I want to get angry over this misconduct, I know where it's coming from, he's literally in a panic.  I have taught my son manners and he knows better.  His impulse control is not the same as that of most 6 year olds- but last night he proved that it is getting better.  He said thank you :-)  Jack was watching me "torture" Nate by making him ask for more for each fry.  We were working on saying fry, which he said in the past but lost.  Jack was kind of laughing about it, and I suggested to him that it might help Nate to understand if I held his fries too and he asked for "more fry" when he wanted one.  He handed me the fries and proceeded to do this for the rest of the meal.  What a selfless thing to do!  Did we get "fry" out of Nathan?  Nope- but he was watching Jack when he said it, and he did make attempts, just didn't quite get there.  Was so proud of Jack for being a great big brother.

After dinner we headed over to Target to pick up a few things.  Target is often a nightmare with both boys in tow- Nate cries if you stop moving and Jack wants to look at everything- not the best combination!  After we got what we needed I dared to take them to the toy section.  Jack loves this of course and to my surprise last night Nate was looking at everything too.  And he got really excited when we stopped at the Toy Story section.  He reached for a woody doll and held it for several minutes, then dumped it.  But still, I have never seen him do that before.  And Mr. Jack encountered a huge display for the new movie "Planes" (soooo excited to take him to see it).  His eyes just about popped out of his head.  In the past this would have amounted to meltdown city.  Not now- he looked at each individual plane- they all have cutesy names, but of course Jack was like "um, mom, that's a corsair" (duh).  He chose one plane, and although he asked multiple times for more, he was happy with the one and left without a fuss.  We even encountered a non child friendly check out person.  I requested multiple times that after she scanned the plane she hand it back to Jack- she totally ignored me.  This would usually be another trigger, and he did start to get upset, but managed to get the words out- mom please get my plane.  So I did, and he was fine.

Here is the icing on the cake that was my day.  We all hung out upstairs together last night after we got home.  Well more specifically, Nate and I hung out on the potty and Jack played in his room (yet another thing that would never have happened 6 months ago- independent play).  Nate went on the potty- that is our second success this week.  And he really seemed to understand what was happening, helped me dump it into the toilet and flush.  He really seemed proud of himself.  This morning when I went to get him up, he was DRY.  I put him on the potty and he went again!  Now, all the practitioners have cautioned me that he is likely not ready for potty training, that if he has successes it is likely more of a coincidence type thing than anything else.  My response is this- they are probably right- but he is learning the concept of what the potty is- and what do you call a string of coincidences?  I would call it habit formation myself.  So we are going to keep this up, I have this sneaking suspicion that Nate may just surprise us.