We Made It Through Christmas

We survived Christmas.  At home.  That is basically the best I can say.  This is the first time we have had Christmas at home in 3 yrs, since the year the boys were diagnosed.   We have been leaving and going to the Outer Banks- it was a good way to just change the setting, reduce stimulation for all of us, and escape the bad memories.  We decided we might be ready to stay home this year, see our family, try to create new memories.

Here is a flashback to two years ago:

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 no one 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.  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". 

Long story short, we weren’t ready to stay home.  Or at least, my husband and I weren’t.  It’s amazing how being in a setting where trauma has occurred can affect you.  Nothing bad happened, but I had extreme anxiety and depression throughout December.  It was almost immobilizing. 

I guess the positive is that nothing happened.  We made it through the day with no adverse events.  Other than the typical autism meltdowns, which would have happened no matter where we were.  I was in tears for quite a bit of the morning and just very shaky, went upstairs to try to calm down, and John followed me up the stairs and handed me a mimosa.  I am NOT a drinker.  But there are certain times in life--- well, let’s just say it helped.  It made the day more tolerable.   And I love him for knowing what I needed at that moment. 

We cooked a low key dinner, both sets of grandparents visited briefly, we played with new toys, and generally just spent quality time together.  I am not ready to entertain again- I am not sure I ever will be.  And I am not sure that we will try to stay home again next year.  I had no idea that I/we would feel this badly.  BUT we made it.  The boys had a good day- we had a delicious meal, and I know that all the grandparents were very happy to see the kids on Christmas day.  We still kept boundaries intact to protect our little bubble, but we didn’t have to shut everyone out to do it.  I guess we call that progress. 

The Magical Toy

Every parent of a child with autism is looking for it.  In our case, so is every grandparent and babysitter too.  That toy that will help the child break through- that will be so fascinating to the child that it will trigger some appropriate play. 

Let me try to qualify this.  Remember when your children were babies? That first Christmas where all they were really interested in was the wrapping paper, ribbons, and boxes?  I would die for Nathan to get to that point again.  This year he grabbed tissue over and over again from the top of one of John's gifts and shredded it.  Then he found one ribbon and shook that for awhile.  Completely ignored all the gifts.  For the most part he focused on putting 2 snowflake ornaments together and watching them dangle. 

Exhibit A

This is a very common issue in kids with autism.  Lack of "appropriate" play.  Sounds like a load of crap right?  Kind of like "failure to progress" in a labor and delivery situation?  It's not though.  Put a toy in front of a neurotypical kid and they might need a little guidance to figure it out, but the point is that the would be interested in doing so.  Put the same toy in front of a child with autism and who knows what you're gonna get.  With Nathan he would likely ignore it- his main interests are leaves, string, balloons, pine needles, toilet paper, and paper towels.  If you try to engage him in the toy he will cry and try to get away.  The only person I have seen truly engage him in play appropriately has been the educator who just started coming out to our home in December.  The one who is an "aide" on Mon and Tuesday and a kindergarten "advocate" for the school board the rest of the week (she has her master's and does the aide gig because she loves it).  The first time she visited, my mom, the sitter, and I were all observing.  We all would like to drink her blood or at the very least get an in depth tutorial.  Ooops, was that inappropriate?

If you put that same toy in front of Jack, especially when he was little, he would find a way to spin it.  If that wasn't happening, then he would turn it over and examine how it was put together.  Find the screws, etc.  We used to joke that clearly he would be an engineer- still wonder about that.  We spent about 9 months in weekly "play therapy" with Jack.  I will never forget it as it was one of our first therapies after his diagnosis.  We did OT on Saturday morning, and then I would drive Jack 45 minutes to this attorney's office where the child therapist held her Saturday hours.  She lugged a million toys with her every week.  I would watch her try and try again to get Jack to engage in imaginative play.  He did not want to make characters interact with each other.  Eventually she did help him do this- even if it was a cake and a banana talking to each other.  Hey, we're not picky here.  I used to stress so much about this "deficit" that Jack had- God it sounds so stinking minor now.  If this was the biggest issue with Nate we would be coasting right now. 

So back to the toys.  I am constantly on a crusade to find that "magical toy" for Nate.  In order to get him to do a puzzle I basically have to sit him in my lap and cross my legs over his- ie, restrain him.  To get him to pay attention to any toys, they have to be in his room, the door has to be closed, and there must be no other entertainment option for him.  If he engages with something for two minutes, it's a victory.  This is of course besides his beloved string.  He could do that for hours.  I have found myself on my hands and knees dangling a piece of string next to his in a desperate attempt to get him to notice me/interact with me.  It does work sometimes. 

We seriously should own stock in Melissa and Doug, Plan Toys, etc.  I think we might be missing about 10 Melissa and Doug toys from their collection.  And our family has been so so considerate in continuing this trend- every gift Nate received this year was something that would aid in his development.  Awesome.  We haven't opened over half of them, but we'll get to them.  I don't want to bombard him, I want him to focus.  After his birthday, I hit amazon again, hoping to find something he would really like.  I thought I had done that for his birthday, but came up with a big zero.  Not a flicker of interest in anything.  So I found these:

http://www.amazon.com/Plan-Toys-552301-Water-Blocks/dp/B0000663QL/ref=sr_1_1?s=toys-and-games&ie=UTF8&qid=1357175104&sr=1-1&keywords=plan+toys%2C+water+blocks

Nate LOVES movement- thus the string, etc.  He loves water.  He is the only kid I have ever seen that loves to have water poured over his head to rinse his hair during a bath.  Jack screams like a banchee and shakes his head like a dog.  Nate stands up, squeals, and moves closer.  So even though these blocks were almost 40 bucks, there were only 6, and I couldn't know if we would be successful, I went for it.  It is the only toy he has truly paid attention to from Christmas so far.

He loves to shake them and watch the water move.  He loves to look through them and see everything around him change color.  And occasionally I can sneak in a brief period of building.  Which is the key- the developmental play has to be "worked in" to what they want to do right?  Luckily, my efforts are rewarded with amazing moments like this.....

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. 

I Guess It Was Inevitable

Today was Nate's 3rd birthday.  I'll be honest, last year, our family was in such a state that I literally cancelled Nate's 2nd birthday party, made it close family only.  So I guess I felt the need to make up for that on some level, even though I know he's not really aware that he missed anything.  At the same time, he would not enjoy a "big" party- he would be overwhelmed, overstimulated, and would be likely to have a meltdown.  I was a bit disappointed that several of our friends were not able to make it initially, but in the end I think it was for the best.  I would say that Nate was a bit overstimulated even with a smaller party.

I was finally able to pinpoint something that Nate really loves this year- so I took the idea and ran with it.  Really simple- balloons!  They were EVERYWHERE.  And Nate noticed right away this morning- I started hanging these balloon banners that I made and his eyes got so big. I really do feel like he knew that today was "about him", although he doesn't understand the whole birthday concept.  One thing that made me really proud this morning- big brother Jack gave Nate his gift, helped him open it, told him happy birthday and hugged him.  And Nate noticed the gift- a duck and goose book and stuffed duck and goose.  I have been working with Jack to help him understand a bit better the idea that he can give, he is not always going to be the receiver.  It's been a tough concept for him. 

The party went well, great group of people, all of whom really care about Natey and understand where he "is".  No surprised looks when he ran back and forth, collapsed on the floor, or stood on his head.  He did sneak to the treat table and snatch some stuff which tickled me- that meant he was paying attention to his surroundings.  I even took one of my first "risks" since the boys were diagnosed.  Nate has a little "buddy" from his old ABA class- which means they occasionally acknowledged each other's presence, and his mom and I have been in that Friday speech class together.  So I invited their family, which was a huge leap of faith for me.  Letting someone new into our lives- and I am so glad that I did.  They are new to the area, and have a special needs child, which must be a lonely place to be.  Such a nice family, and hopefully, some new friends.  Friends that understand fully what it's like to be raising our kids.  Jack did pretty well, other than a minor argument with a little girl over the Christmas tree lights- did great during the birthday song, as I had "tasked" him with helping Nate blow his candles out- not even a hint of a meltdown.  We did a simple craft, played with balloons (including those "punch" balloons- remember them?), and had cake.  It was a good time. 

and why wouldn't Jack wear his airplane tie???

So what was inevitable on what I would consider a good day?  Mommy's feelings, that's what.  I feel guilty about it.  I am happy that everyone had a good time, that there were no issues.  But it is milestones like today that make me realize what a huge amount of work we have to do.  When I see Nate next to his neurotypical peers, it's almost too much.  Jack may seem a bit quirky to me (most people don't even notice) in groups, but Nate just doesn't even live in the same neighborhood.  He spent about 80% of the party playing with ribbon that was used to tie up the balloons.  And he ate.  He acknowledged his little friend a few times and sat at the table with the other kids.  He even said a few phrases.  Of course he also showed off his new skill of knocking over our furniture- kid is strong.  I managed to smile the whole way through the party. 

After everyone left, we tried to sit down with my parents to have Nate open a gift or two.  He had ZERO interest.  Less than zero- he was annoyed by our intrusion.  He wanted the ribbon he had been playing with.  My parents are very good sports, and understand the situation, but it hurts to watch it.  I mean, what would a typical three year old do with a pile of presents?  Rip into them!  We tried to open about 4 gifts today- the only thing he played with was this stuffed mouse that came with one of his toys- it has a long dangly tail so he could swing it around.  I did it.  I broke down.  I left the room, and I made it until everyone, even my parents, had left.  I had a good cry.  I am proud that he is three.  I am proud of how hard he has worked.  But I am sad.  And it's not going to go away.  It's so hard to watch him in his own little world in these circumstances, and feel so helpless to get through to him, to help him enjoy things that other children his age would adore.  He did not miss out today, not for him.  He enjoyed all of his day.  But as his mommy, I wish, well so many things, but most of all, today I wish he could have blown out his own candles and enjoyed his presents. 

Jack and Baby Jesus

For my family, and most of my friends, this title may bring back memories, maybe even illicit some giggles.  I have many many serious things I could be updating you on right now- IEP meetings called, letters written to the school by therapists and physicians, new medications, more shots, first weeks at school, but tonight I choose funny.

After a trying week, I decided that tonight would be the night we would put up Christmas decorations.  We have Nate's birthday party next weekend, so we needed to get it done anyway.  We had some drama with our tree, ended up with a new artificial one, as getting a real tree is not an option in your house when your three year old is obsessed with pine needles and twirling them.  We would have no tree left in a week's time.  Anyway, so there I am getting out the decorations, including my nativity set, which I adore.  Jack started talking about it right away, about the angel Gabriel, about Jesus coming again, I am really impressed by all that he has absorbed.  Then it happened.  He started in again.  Anyone remember last year?  For those of you who only know me through the blog, this is a bit awkward.

My five year old son, with Asperger's, likes to pretend he's baby Jesus.  Sweet in some ways right?  Well the problem with this situation is that as with all of his  interests/obsessions, Jack takes this to the extreme.  Remember how when he is being a baby airplane I can call him nothing else at any time?  The exact same way with baby Jesus.  As in "mommy, tell me, baby Jesus, that it's time for a snack".  Or, "I'm baby Jesus my best friend is Santa".  Or "tell me, baby Jesus, stop knocking the ornaments off the tree".  I am worried that he will continue with this and that it will progress to the level that it did last year.  I found it really really difficult last winter to tell Jack "baby Jesus, go make a poop or we're not going to the movie."  However, he would respond to nothing else.  Or, "baby Jesus, stop saying bad words, Santa is watching".  Or "baby Jesus, it's time to go upstairs to your room, you're in time out.".  I mean I was raised Catholic- it just feels wrong to tell baby Jesus what to do!!!!  So far it's been pretty mild, I've only really had to serve baby Jesus hot cocoa while he decorated the tree.  Of course John LOVES that Jack is baby Jesus, because that makes him baby Jesus' dad.  Sigh.  Sorry honey, it doesn't work that way. 

Welcome to our holiday season :-)