An autism Christmas...redefined

I could not wait for Kai to be three. That would be the year that I would get to spoil him for 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. I 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 and ten red flags, that he was not even close to being able to write a letter to Santa. I had this image in my head that just had to happen. I am really stubborn after all.

This is what happened.
 He walked out of his room ushered by daddy. He quietly took one look at the living room, walked right past it, and ran the opposite direction. 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 he still paid no attention to them. 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. I 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 and 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? No way! 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 to celebrate. I now knew that Christmas (birthdays 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 routine and changes are hard to handle. Of course, it's not like me to give up altogether. I just put it on the back burner and tried my best not to let it consume me. The hubby and I would do our Christmas routine as usual and would offer him his gifts. Kai 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 when he ignored the gift.

Several years later, around 2008, we had a small 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 started wondering what gift bags might have in them. In 2009, I came up with a strategy. 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. He did as asked and seemed to find comfort in that process. It prepared him, and he knew what to expect. In 2010, I labeled all his gifts with his name written really big where he could see it. I guided him to find the ones with his name, and again, he seemed to enjoy that. I sat with him, tore the corner of the gift for him initially and had him finish opening it. 
This year, well this year was amazing.

This year something changed. Shortly after his June birthday when he asked about "birthday gifts," he started asking for Christmas gifts. I explained that Christmas was in December, it was still July, and we would also need to have a Christmas tree first. He still didn't fully grasp the concept of days and a calendar. He was so excited when the day finally came to go purchase a tree. He now knew it was 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. I figured I can always have him drop the "Santa" part of the equation to avoid having a 17-year-old asking for Santa, if need be. 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, at nine, was making up for YEARS of not celebrating Christmas in this one year. We celebrated Christmas Eve with some friends and family. We encouraged the kids in attendance (and Kai) to open a couple of gifts before Santa's big delivery the next morning. He was so excited, but it was hard to explain that it was only a preview until the following day and not the real gifts. 

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 and truly enjoyed this Christmas like I had wanted him to do that day when he was three in 2005.

I could not stop smiling. I still can't stop. 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 most 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. A chance to feel normal and relaxed where the only stress is how much you probably should not have spent on this or that. We yearn for that "typicalness." It's really tiring not to be that typical family 365 days a year, 24 hours a day. For once, we were somewhat normal, and it felt great! 

I will never forget Kai's smile and intense focus as he unwrapped each gift. I will always remember how he innocently ran to his room with several of his gifts under his arms, ready to play and he was not even halfway done opening them all 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 at 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!

Update on us...it's been a while!

It has been a crazy month!

Had a lot of work that kept me busy and added to my already high stress.

I finally feel like these last two weeks I have been able to rest, and I am looking forward to this faux South Florida "winter" break. :)

A lot to post about but where to even begin?

I will begin with the little monkey.

- Reports after reports from teachers and therapists all said just how well he's been doing compared to before treatment with the new doctor. 

- Got a phone call finally yesterday that yes, his stool sample came in and instead of a +3 he is now at a +1 with yeast which means they are not colonizing successfully like before. Have an appointment for next week to probably repeat the yeast protocol. Not looking forward to it though.

- Back to the school and therapy news, he has been using the learned phrases from ABA and using them in real life scenarios. An example is when he said, "He is riding the bike" to tell me that a child that was at our house was using his bike/tv toy and to get him out! lol

- Some skills have come naturally to him. Simple things like putting his socks on perfectly, shirt and shorts are all great breakthroughs. Such little things that we all take for granted.

- He is riding his razor scooter much faster now and balancing quite well compared to last month too!

- While at his holiday party at school he grabbed my arm and said "Mommy, go home now please." Not that he wanted me to go home, this meant LET'S go back now, please. I almost packed up and left just because he formed the sentence on his own without it being taught to him. We didn't leave though. Made him stay. Mean mommy. :)

- So, overall, he has been a doll behavior wise and back to his usual laid back, smiling, singing and dancing adorable monkey with all sorts of new skills to show!


On to something else, CHRISTMAS IS COMING!! Woohoo...yes, I am excited. We'll see how excited after Thursday, but it's been a full year, and my hopes are high once again. Last year he conquered opening gifts with A LOT of prompting, but he did it. He showed particular interest in the gifts, but it was a success to have him rip the paper open even if he did run away afterward.

What started out as a frustrating task of putting the ornaments on the tree ended up being very enjoyable. He put on at least three ornaments on the tree. He had done so last year as well so when he initially refused I thought he was regressing! But, turns out he just wasn't as into the Nemo ornament as I was. As soon as I showed him an old one he did it with no problem. Yeh!

I have finished wrapping the gifts. All of the toys have been taken out of the box, filled with batteries and are ready to be played with right out of the wrapping! I labeled the outside of the wrapping with his name and wrote the word TOY really big. I also added the corresponding #s to see if I can get a pattern going to show him that a- it's a gift FOR HIM, b- it's a TOY and c- there is a limited amount he will have to open. I also numbered them from least enjoyable (a spinning top) to the one he is going to go insane for (the leapster). Only because if he gets the Leapster first, the other toys do not stand a chance! ha ha ha ha

I took the contents out of one of the gifts this afternoon and left it unwrapped by the tree to "test" him. It's too much all on Christmas morning anyway so this is his early bird one. He bit! Boy did he ever! He ran to the box which is way bigger than him, brought it over to me and said: "Mommy, open golf please!" (It's a mini golf kiddie set). I was so excited. I rushed to get the contents I had hidden and brought it out for him. He proceeded to help me build it. Wasn't too hard but it was such a nice feeling to have him next to me "building" something.

Ok, almost done I promise. One more BIG announcements:

1- I am 5 months pregnant! Yes! Very exciting. It's another boy, so there is a lot of worrying going on, but we are doing our best to make this a healthy pregnancy. Taking my prenatal vitamins (which have been very tough for me), probiotics, eating as much organic food as I can, planning a toxic-free nursery and well, you get the picture. REALLY trying to keep those darn "environmental insults" out of our lives. Due date, May 10th! Woohoo!!!



Have a GREAT holiday everyone and as always, thanks for reading!

Have a GREAT holiday everyone and as always, thanks for reading!

I am alive...

Hello!
I have been gone forever. 
So much to update!


1. My little chipmunk is doing so good! Guess what? He is potty trained! Well, almost. For #1 that is. It is a huge step! I cannot believe it. I knew that once he did it, it would stick. He is older now and can pick up things quickly once he "gets" them. No magic formula. We did what we always did and would give up on. Lots of water, no diapers in sight and we would make him sit in the potty. I would let him watch the portable DVD player while sitting. It coincided that he really really really had to go. It was bed time already and he had held it ALL DAY. He started to whimper for a diaper as I changed the movie playing in the DVD player. He was so interested in what I was going to play that he let it go. Yup! He peed. He did so much that I had time to call my husband and my mother and we all started chanting for him excitedly! Woohoo!

The next day he went in school once and once at night. The third day was the same. By the fourth day my husband sent me a text saying he requested to go while at the park with him and went standing up! That same night we ran into him going on his own. Instead of coming to get us to take him, he just walked in, turned on the lights and went by himself! Hilarious to see him doing such a big boy thing. I love it.

Now on to #2. Not as easy, but I am confident the day will come. He brings us a diaper to put on him when he has to go and holds it until we put it on. In a couple of weeks we will start with round # 2.

2. Let's see, what else.....he has been improving on sight words tremendously. Learning pretty quickly and seems to like it!

He now regularly uses his staple sentence of " Mommy, come with me please" " or when reminded "I want_____" but much much easier than before.

3. Christmas. We have decided to wrap some gifts already assembled, leave others out and let him discover them on his own. He usually walks right by them so we will see. He actually saw one I was wrapping a little while ago and ran to take it away from me. I told him he could touch it after nap. Of course it will disappear after naptime and he won't remember it, but the good news is that he was interested!

4. I remembered one more thing! He tried pop corn at school! That is huge considering he eats the same things all the time.

5. He is also hanging from his arms more and more at the park in school with the teacher. This is a big change in upper body strength he never had before. It's pretty cool to see him swing like a monkey!


That's it for now! Thanks for reading. 

I hope you all have a fabulous holiday!