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.
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.
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!
I cautiously hope it keeps getting better.
Thank you for reading.
Have a wonderful holiday season and a joyous new year!
