An autism Christmas...redefined

I could not wait for Kai to be 3. To me, that would be the year that I would get to spoil him on Christmas and he would be able to join in on the fun. That would be the year that he would write Santa a letter and wait anxiously for his gifts. The year in question? 2005.

It's what typical parents do right? I did it too. Spent way too much money at Toys R Us and once Kai went to sleep, we set up the entire living room with toys. I mean, the ENTIRE living room. There was a drum set, ride on toy, books, ball toys, instruments, electronic toys, DVD's, train set, etc. You get the picture. Never mind that he had just been diagnosed several months before, that he had a thousand a ten red flags, that he was not even close to being able to write a letter to Santa....oh no. I had this image in my head that just had to happen. I am really stubborn after all.

What happened was this; he walked out of his room ushered by daddy. He quietly took one look at the living room, walked right past it and into his playroom. He wanted nothing to do with the toys. NOTHING! Did not want to touch them, listen to them, look at them- NOTHING! The more we tried, the more frustrated he got and the more his behavior would deteriorate. We kept the toys there for several days and NOTHING. We put them away and over the next year he slowly warmed up to them. He was beyond overwhelmed. He had/has autism. I just clearly did not understand it yet and wanted to force a "typical" event parents celebrate with their kids as if I too, was living the same life. That could not be further from the truth. I had no idea that my life was about to spin so out of control in the months and years to come. This was just a tiny incident in a sea of heartbreaks that would come my way. I was devastated.

2005, what a year.

I cried so much over that failed Christmas and those "after diagnosis" years. Not only was there no Christmas but no celebrations at all. Photos with Santa? forget it. Birthday celebrations? ya crazy? that means there is singing and blowing out candles or in his case -failure to blow them! Easter bunny? ha! Fireworks? never! Costumes? not unless it's the loony bin one for me! You get the picture.

The following year I vowed to do as little as possible because now I knew that Christmas (birthday or any holiday at that) was just another day for him. I knew that trying to force it on him would backfire. All he wanted was his usual routine. That is what he expected and anything new would throw him off for the rest of the day. Most kids with autism find safety in that and changes are hard to handle. Of course, it's not like me to give up completely. I just put it on the backburner and tried my best to not let it consume me. The hubby and I would do our Christmas routine and would offer him his gifts. He would push them aside and we would just shrug it off. The toys would stay there until he was ready for them. I would warn anyone offering him a gift not to expect excitement or anything that "typical" kids do towards gifts and especially not to take offense to it.

Several years later ,around 2008, we had a tiny breakthrough. He started to look at the gifts out of the corner of his eye, run towards them, touch them and then run away. He would be curious of what gift bags might have in them. In 2009, I numbered all his gifts. I would ask him to bring me # 1 and I would open it for him. I would then repeat the same exercise for all gifts without once forcing him to open the toy or play with it. In 2010 I labeled all his gifts with his name written really big where he could see it. I sat with him and would tear the gift for him initially and had him finish opening it. This year, well this year was amazing.

This year brought on something in the likes of a light switch. Something just turned on. Shortly after his birthday when he asked about "birthday gifts" he started asking for Christmas gifts. I explained that Christmas was in December, we were only in July and we would also need to have a Christmas tree first. The day we got the tree he was just beyond excited. He now knew we were in December and naturally, Christmas must be very near. The tree went up the day after Thanksgiving. He checked that tree several times a day to make sure he did not miss "the gifts". He asked and asked and asked and asked until he was blue in the face.

Days before Christmas I sat with him to write a letter to Santa. I had him address it to Santa Mommy. (I don't know what his cognitive level will be years from now so if need be, I can always have him drop the "Santa" part of the equation to avoid having a 17 year old asking for Santa because it's what I taught him.) I prompted the first several things on the list I knew he would like and then he rattled off a couple of things ON HIS OWN to add. I was floored. 

I really thought he was not going to make it until Christmas day. This boy is making up for years of not celebrating Christmas in one year. The night before we celebrated with a Noche Buena dinner. We had the kids in attendance and Kai open a couple of gifts before Santa's big delivery the next morning. He was so excited. It was hard to explain that it was only a preview until the next morning but he obliged.

Christmas morning was just a dream. He dove to open all gifts. He played with them one at a time before going on to the next one. He really truly enjoyed this Christmas like I had wanted him to do that day when he he was 3 in 2005.

I could not stop smiling. I still can't stop smiling. I want to make it clear that it's not about the material side of asking for things on Christmas. To me, with him, it's about seeing him enjoy a day that typical children look forward to. A day that I as a child enjoyed so much. It's about us being able to finally have a day when we are the typical ones too and not the ones that once again do things differently and all the effort that comes with that. A chance to feel normal and relaxed where the only stress is how much you probably should not have spend on this or that. What most people see as typical or normal, is what we yearn for. It's really tiring to not be that typical family 365 days a year, 24 hours a day. For once, we were kinda normal and it felt great!

I will never forget Kai's smile and intense focus as he unwrapped each gift. I will never forget how he ran with several of his gifts under his arms ready to play when he was not even half way done opening all the gifts yet. The excitement was palpable and contagious. My little boy deserved this day. So much of his childhood has been stolen from him and us but in that moment, we had it all. I don't know what the future will bring but my now is pretty darn good when compared to 2005!

I cautiously hope it keeps getting better.

Thank you for reading!

Have a wonderful holiday season and a joyous new year.

Zumba diaries

I love to work out. Yes, I know I used LOVE and WORK OUT in the same sentence. Some times I don't feel like it but I have never regretted getting off my butt and doing it.

Last week I had a rough day. It was one of those days where everything just went wrong. It wasn't about what went wrong per se but that so much went wrong at the same time on the same day. By the time 5pm came I had to decide if I was going to change and go to my usual Zumba class. If you are not familiar with Zumba I will explain it quickly. It is a high energy, fast moving, dance class where you move to all sorts of Latin rhythms or what I call happy music.

It's hard to muster up the energy to take that class when you feel nothing that resembles happy and even less when you are down right miserable.

Let me rewind a bit. Last month while at my Zumba class and while on a typical, happy day for me, I had a conversation with a friend from class. She was so excited. Her son (my age) had come to visit her. She gushed as to how happy it made her to spend such quality time with him and how proud she was of him and his new business. How he was dating this new fantastic girl and they would probably be married soon.  I was really enjoying the story. I was reeeeeeeeeally feeling her excitement. I am very sensitive to what others are feeling and can often feel it when they are standing close to me (I know, weird....but I digress). This was during a dance break. When she turned around to start dancing again, I was still smiling just so very happy for her. Then it hit me. I am NEVER going to have that with Kai. Don't know yet if I will with Quinn either. At best, Kai will be 40 and maybe begin to be phasing off his Mickey Mouse stage and moving on to Star Wars or other more appropriate "boy" categories I am not yet familiar with. He will probably be living with me. Will probably never get married. I will probably never have grandchildren.

It's not that I have not thought of this before but it's that it just all hit me at that moment. Everything that autism has and will steal from me was playing in my head like a bad movie. Music started playing and I had to fight back the tears. To make matters worse, this was the song playing:



It is a BACHATA version of "Stand by me". I actually don't really enjoy bachata. It's my least favorite style from my classes but it was the song that affected me. I followed my adorable peppy instructor but I had tears down my face. Lame but I could not help what I was feeling. Of course I will stand by my sons but it did not make it any easier to digest. Luckily the song stopped playing and we moved on to another song and thankfully a much much higher energy one. Phew! Thank God for Pitbull and my ability to recover from being sad so quickly. Phew.



That class behind me, here I was last week considering if to attend class on a day when I was feeling rock bottom. I changed, put on my sneakers and arrived at class. I had no energy, no smile and was already thinking this had been a bad bad mistake. Everyone was in such a good mood that day. Gym friends all said cheery hellos and class started. Somewhere between my half ass merengue and weak reggaeton routine I noticed a girl in the back of the class. She was wearing a scarf over her head. Wait, I knew her. This is a girl that is always in class but now she has no hair and instead of being in the front of the class, she was hiding out in the back of the class. OMG! What happened? Cancer? Something like it? I thought. My heart sank and in that instant everything was put into perspective. Yes, things were really bad that day for me. Yes, there are days when my life just sucks and the future seems bleak but at least I have "life". This girl was probably fighting something completely different than I was but she was also going through her own pain and yet, here she was. She might have been in the back but she was rocking Shakira and Willy Chirino while I was self pitying during the songs. Just like that, I got over it. She inspired me to see the big picture that day. She reminded me that not all is lost and although things still hurt, we gain more by being positive than by rotting in negativity. We all have pain and we all have hurdles. It's about acknowledging it, feeling it, then putting it to rest (until the next time) and moving on.

My husband's response to me always saying "things could be worse" is usually " yeah but they can be much better too". He's right but since we can't control some aspects of our lives we need to focus on what we can and that's our attitude. It's all how you look at it.

For now at least, I have regained perspective and I am ready to keep rocking my Zumba class with a smile on my face regardless of what is going on in my life and class that day. I leave you in the company of Cuban genius Celia Cruz and her 2nd famous words "RIE, LLORA, que a cada cual le toca su hora" (loose translation: LAUGH, CRY because each one of us has our time)



Azucar!