What to Say and When to Say It

Something I have struggled with for a long time is the decision of when I should let someone know that my children have autism.  There are many circumstances where I have to inform people- obviously school, babysitters, etc are a no-brainer.  I am talking about when we are out in public- when the boys are overstimulated and having a meltdown, or when their behaviors are just, well, unusual.  I don't know if I need to explain, or if I should just let it ride.  While we were on vacation, I let it ride the entire time.  We didn't encounter that many people anyway- mainly at the Wright Brother's Museum, and I'm not gonna lie, we did get some dirty looks there.  Jack was not naughty- just extremely exuberant, and very effusive when it came to talking about airplanes- of all types.  I guess it's frowned upon when your child decides to demonstrate said knowledge during a formal presentation to a group of all adults on Christmas Eve.  Oh...well.  I knew I would never see those people again, so I can live with that. 

It's acquaintances, family members of close friends, neighbors, that I have a tough time with.  I don't want to walk around advertising to everyone I meet, however, I don't want people to think my kids are just naughty or out of control.  This is apparently a common problem, otherwise, these would not exist:
http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/

I was presented with one of these cards a little over a year ago by the receptionist at the boys' OT.  She has a daughter on the spectrum as well.  And I was bringing both boys in by myself every Saturday for their appointments- between the transitions of getting out of the car, taking off shoes and jackets, detaching from toys, and then leaving mom, there was a meltdown at almost every session.  I mean multiply those transitions x 2 and it's pretty much inevitable if your child has autism.  There are many parents whose kids are seen at the OT who are familiar with autism, but some are not.  And I was getting looks.  I get looks a lot.  I was offended by the card at the time- as though the receptionist was saying the boys were being "bad".  I get it now.  Just had to come around a bit.  I have never actually given one of these cards out, but actually think it would be fun to hand it to someone who is giving me the evil eye on the playground when my son won't stop spinning the steering wheel because he is obsessed with spinning things, and freaks out when another child tries to join in.  My kid can share!  Just don't touch something in his area of interest! Ha

Actually I take that back.  We went to a close friend's daughter's birthday party yesterday- at a bounce place.  After about 20 minutes at the party, my kids were parked at opposite ends of the facility- one continuously spinning the propellor on an aircraft carrier in the toy area, and the other chowing down on potato chips while daddy watched the football game.  Neither of them had much interest in socializing- although Jack did make sure to find the birthday girl and wish her a happy birthday.  Also, Jack handed off the aircraft carrier to another little boy after awhile and moved on to some robots- score one for Jack!  At these events, I bring a cooler- I have their gluten/dairy free pizza and cupcakes.  I am glad they are available, so we can go to these events relatively pain free.  But people are always curious.  I wonder if they think it's odd that I give Jack at least 3 opportunities to leave the area when the birthday song is coming up- he's caused distraction from the birthday kid many a time when he screamed at the clapping that is inevitable after the singing.  Yesterday I was so proud of him- he opted to cover his ears b/c he wanted to be there for his buddy.  Should I explain these alterations in "procedure" to the people sitting next to us?  I chose not to.  Then Nathan saw the balloons tied to the backs of all the chairs and wanted them- like really wanted them.  Nate doesn't often want something, so I handed him an orange balloon- feeling like a nice mommy for untying one when it wasn't time yet.  He looked at me like I had three heads and proceeded to cry and then try to rip a BLUE balloon off of the chair next to him.  I switched them- guess I know his color preferences now for the first time ever.  After people started getting up from the party table, he proceeded to walk around the chairs and "free" all of the blue balloons.  He wanted to hold the string for awhile, but then he wanted to watch the balloon float to the ceiling.  One time he let go and my friend grabbed the string so he wouldn't "lose" his balloon- a small meltdown ensued.  Then my friend's cousin, who is tall, grabbed the string for him and handed it back to him.  Nate let go again and the cousin handed it back to him again, after the balloon reached the ceiling.  This continued for about 10 minutes, release, grab, hand back, repeat.  My friend's cousin is a great sport. 

I looked at my friend and expressed to her that it is at times like this that I wonder if I should just let the family member know why Nathan is so hyperfocused on such a simplistic activity.  This would be common for a baby, but Nate's three.  I still didn't tell him, just talked to my friend about it.  She caught up with me a few minutes later and let me know that she told him- and he said, oh, ok.  He said he had friends with a child that has autism.  But he didn't think anything of Nate's behavior really- not until he knew.  So was it necessary to let him know?  Probably not.  I guess I am still struggling to find that line. 

AWAY

Sorry it's been so long- I will be honest, I've been pretty unmotivated to write since we got back from our trip.  Lots to do, non-sleeping children, and just the need to continue spending quality time with them.  We trekked off to the Outer Banks for Christmas- and not just the Outer Banks, but Hatteras Island.  And not just Hatteras Island- but all the way down to Hatteras itself.  For any of you who go to Duck, or Corolla, it is worth the journey to stay all the way down on the island.  Sooooooooo peaceful, even in the summer, which we have done before too.  In fact, the last time we went, Jack was 3 and Nate was 6 mos- prediagnosis.  I think that's part of why we wanted to go back- we remembered it as a happy time, before things got so complicated.  Of course we didn't recognize that at the time.  Ha

By traveling so far away we took all of the holiday hoopla completely out of the equation.  It was just us.  I was nervous that this would be so much work that it wouldn't be relaxing, but that was not the case at all.  We just reminded ourselves over and over again that there was no agenda, there were no expectations.  Just us.  And it worked.  The only major outing that occurred was a trip to the Wright Brothers Museum up in Kitty Hawk- don't think I have to explain that one :). 

Other than that, we pretty much settled in for some good old family time.  Hatteras Island is the antithesis of the typical beach "resort", especially in the winter.  Yes there are some souvenir shops, but few and far between, and mostly closed in the off season.  There is ONE major grocery store on the 60 mile long island, and fewer than 5 gas stations.  There is one highway that goes all the way down, and it was actually closed from September until about 2 days before we left on our trip.  They had an emergency ferry in place after hurricane Sandy.  They just reopened the road.  It's one lane, and they are constantly placing huge sandbags, as the waves crash right behind them.  It's quite a site. 

We managed to make a pretty nice Christmas- I brought a small tree and some cheap ornaments, and I sat down and did some of the things I never find time to do around the holidays.  Gingerbread house, letters to Santa, art projects (which Jack despised of course).  Even managed a pretty nice Christmas dinner. 

A few shots from a very relaxed day.
Then of course there was the beach...

We were the ONLY ones on the beach every time we walked over there.  There is just no greater feeling of peace. 

I highly recommend a beach Christmas to all families, but particularly autism families.  I'll say it again- peace.  Priceless!

Merry Christmas!

We are going to be off the grid until after the holiday, so I just wanted to wish everyone who reads our blog a wonderful holiday.  I feel your support on a daily basis and appreciate it so much.  Love to you all!

Up Close and Personal

As mothers we all have the privilege of having that extra special "close" relationship with our little ones.  I know daddies have it too, but I still feel like there are certain things that are saved for me- booboo's, illness, tantrums, and some extra special snuggling to make up for all of that.  Nathan has taken these special privileges to a whole new level.  He has taken to waking up in the middle of the night lately- he may have done it in the past and put himself back to sleep because he was still confined to the crib, but now that he's in a toddler bed all bets are off.  So long story short, I have ended up sleeping in a toddler bed with him for several hours several nights a week.  My back is suffering big time.  I think there is a misconception out there that kids with autism are not affectionate, don't like to be close to people.  Couldn't be further from the truth with Nate- seriously couldn't. be.

Instead Nate likes to be extra close.  He likes his face literally touching mine at all times when in bed, he likes our noses touching.  Sometimes even this is not enough, he likes to splay his body on my head.  And fall asleep that way.  And wake up if I try to move him.  Awesome. 


Oops, published when I didn't want it to.  Anyhoo, so last night went to a whole new level.  I passed out in the toddler bed, face to face with Nate and woke bc my cheek was wet.  The boy was licking the palm of his hand and rubbing it on my face.  Guess I wasn't very entertaining when I was asleep.  His reign of goofiness has continued this morning- carrying as many balloons as possible while running around the house, deciding to continually hit the menu button on the TV just to make Jack mad.....this boy has ants in his pants today!!!

Brotherly Love.....

Lesson Learned

Tonight John and I went to our marriage counseling session.  It's a very touchy time of year for many people, and we are certainly no exception.  As much as I am looking forward to Christmas, my mind is still somewhat stuck on where we were as a family last year- there is only one word that fits- reeling.  There was not one aspect of life that was stable.  We were still working on accepting the boys' diagnoses.  We were changing diets, initiating many new therapies.  Experiencing major financial strain related to the boys' medical needs.  And of course going through marital strife.  The thought of even celebrating Christmas last year was overwhelming- I know I just wanted to crawl under a rock and stay there. 

Alas, last year John and I were not nearly as wise as we are now.  We tried to make a nice holiday "for the kids".  I have come to realize that that phrase means nothing if mom and dad can't survive the experience.  The boys can not enjoy their holiday without us- they need us even more than most kids need their parents.  But rewind- we hadn't realized this yet.  And so we tried to keep up appearances, aka do everything the way we always had, including a long-winded dinner at a restaurant on Christmas Eve, church, and then hosting a big Christmas dinner at our house the next day.  Bad, bad, bad.  I preordered the boys' dinner at the restaurant to ensure it was gluten and dairy free, and the food was brought out basically right away when we got there- noone in the family ordered for an hour after that.  Result- meltdowns from both kids, picture Jack falling out of his chair multiple times, hands over ears, crying/yelling about all of the noises, Nathan banging his head on the table.  I carried him into the next room and put him down thinking maybe if he could walk around....he proceeded to lie down on the floor and bang his head some more.  We tried, we really really did.  The pressure was just too overwhelming- we left before dinner was served, we skipped church.  We went home and we both cried.  For our family, for the fact that we could no longer have a dinner out, for the feeling that noone in our families really understood what we were going through.

You would think that after this we would cry uncle for Christmas day.  But no, we pushed on.  We had a lovely Christmas morning, even had fun doing some of the cooking.  I will not even attempt to describe the rest of the day, so I will just say that it was one of the worst days I can remember- and a definite low point for our family.  I didn't feel like we could carry on at all after that point.

Yet here we are- stronger than ever.  We definitely learn something from every experience in our lives.  Well here is what I took from this- sometimes pretending is not ok, it's not the right thing to do.  There is no way to "protect" our extended families from our "new normal".  We can't do the same things anymore.  And to say that we were doing it for the kids is crap.  They certainly weren't enjoying the restaurant, they didn't give a hoot about a standing rib roast.  They would be happy with grilled cheese and chips.  Our marriage counselor described last year so concisely this evening.  He said that last year, we were like the violin players on the Titanic, who continued to play as the ship sank to give the other passengers a sense of comfort/normalcy.  It was torture for us, and did it help our families?  Not at all.  I am sure the violin playing did nothing for the passengers as they fell to their deaths either.  Did those violin players die?  Umm, pretty sure, yes.  So it didn't really work out for them either.  Sometimes, you just have to jump ship.  Circumstances change- accepting this is often the hardest thing to do. 

Accept it we have.  We are shaking things up this year big time.  We are having a Christmas that our family will enjoy- most importantly, one that will be good for the kids.  More on that later, let's just say it is going to be an adventure for us all.  We are focusing on the progress and growth in our family- and we are acknowledging that what was good for us a few years ago is no longer ok.  We are being "us". 

Counting Our Blessings

I haven't been able to bring myself to post the past few days- I have felt like talking about my kids would be somehow disrespectful to the families in Connecticut who are going through such horrible pain right now.  There is nothing going on in my life that is important enough to mention.  So instead I am just going to thank God for all that I have.  For these two beautiful boys asleep on my lap.

For my sweet sweet five year old who has allowed me to call him nothing but "Eagle Eyes" the pilot for the past 2 days.  And Nate is Hawk Eyes, I am Falcon Eyes, and daddy is Snake Eyes. 

For the same little boy considering his Under Armour, which was recommended by his OT (compression type) instead of the expensive weighted vests or "official" compression clothing, his flight top.  And refusing to wear anything but this all weekend.  All of the five year olds that were lost on Friday had similar, endearing quirks I am sure.  I am all the more thankful to be experiencing Jack's this weekend. 

When he stepped off the bus on Friday I almost squeezed the life out of this beautiful child.  He said "are you loving me mommy?"  Then he asked for Chick Fil A.  And he got it.

HOW are these parents walking through their days?  I can't imagine how much pain they must be feeling.  I miss Jack while he's at school.  The thought of forever.....it's just too much to even consider.  I am afraid to send him to school tomorrow and  keep trying to remind myself that he is just as safe as he was last Monday.  Somehow, that doesn't ease my mind right now.  I, like most of the moms, dads, and well, people, I know, am just devastated by what happened in Connecticut.  I will continue to pray for all of the victims, and I will keep squeezing both of my boys extra tightly.  Look at Jack- he is in kindergarten- most of the child victims?  They were his age.  Beyond Comprehension. 

I will also pray for all of the teachers throughout the country who are returning to their jobs tomorrow.  Friday's events reminded all of us of how much trust we put in our schools every day- how much responsibility the teachers and administrators shoulder every single time they go to work.  I can imagine that even entering their classrooms will give them pause.  Teachers are so important- and the reactions of the teachers in Connecticut during this crisis just demonstrates further that our children are not just taught while they are in their care, they are loved and cared for.  Let's all remind ourselves of that when we put our precious children on the bus tomorrow morning.

Career Path for Jack!

I have come up with a BRILLIANT way for Jack to capitalize on his obsessions!  It came to me this morning while I was trying to work on a case before taking him to the bus stop. He was interrupting me approximately every 30 seconds to talk about BF-109's, to question whether mine had a yellow or striped bolt, how many blades the propellor might have, or just to repeat long winded parts of you tube videos he has watched on the subject. 

I thought about how much this drives me absolutely bonkers.  Yes I am proud of his, ummm, focus and memorization skills, but he never ever ever stops.  I have come home from errands to find John looking despondent, Nate sucking his thumb and Jack saying, "daddy BF109, can we watch one more messerschmidt video??".  We do learn to tune him out to a certain extent, but the bugger seems to notice when our answers are too generic and will repeat his questions over and over until we give a meaningful response.

So I've got it- surely this technique could be put to excellent use in the military.  With all of the controversy over the methods used to question military prisoners, I have now come up with a completely harmless (well, physically) torture method that is sure to get some answers.  Just lock them in a room with Jack and ask him to talk about BF-109's.  After an hour or so, they will be willing to tell you anything you want to know- TRUST ME!!!!  Love my boy, but I am so over german airplanes I can't even express how much I miss robots and killer whales right now!!!