You might be surprised to see me blog about only one year of Christmas when I’ve been cramming several years into each post so far. Somehow, this Christmas needed to stand alone. It felt strange combining it with another year because it really does stick out in my memory for a few big reasons..This is sort of a detour on the road of happy little Christmas memories. It’s hard for me to decide if I really should publish this for everyone because it is so personal. I had no idea when I started this telling of Christmases past that I would need to tell this story. I guess after 14 years, I’m finally ready to share it.
1996 – My daughter had just joined us at the end of September so she was still very little. When she was only 6 weeks old, we bought our first house. We had been living in very tight quarters and the addition of a new baby pushed us toward the jump we had been wanting to take for years. It took everything we had to make it work and we were very house-poor. But we were home owners and that felt wonderful.
When my daughter was born, my son had a very hard time. Not your typical jealous-big-brother stuff we had read about. He was scared of her. He wouldn’t go in a room if she was there. He wouldn’t go near her. This was so puzzling.
I remember that this photo was a triumph because he got close enough to her that they could both fit in the frame. Alex turned 3 in October and he had been through some very difficult times as a two year old. I guess I thought he went through the “terrible twos” but this was so much beyond that. I remember days where he literally cried for hours on end. I couldn’t take him to the grocery store because he would absolutely freak out over the automatic doors at the entry. We couldn’t drive a different way than our usual route or he would get upset. He didn’t talk in a conversational way, but he had entire movies and books memorized and would quote from them in situations where they fit. If I asked him “Do you want a drink of milk?” He would answer back “You want a drink of milk?” which I quickly learned meant “yes”.
My pediatrician seemed puzzled as well. He suggested that Alex might have a hearing problem. I knew that was wrong because he could hear the tiniest noise and sometimes that bothered him. I was more than a little angry at our doctor, but I decided to have Alex’s hearing checked just to prove him wrong. The audiologist said that his hearing was great, but with his speech being so delayed that we should go to a speech pathologist. All of this was happening just weeks after we bought our house in November.
I decided it was time to prove everyone wrong again and take him to the speech pathologist. My Mom kept asking me “when is he going to talk?” and I couldn’t understand why she would say that. He quoted lines from movies all the time. He could say any word we said to him. He could even read. Yes, he could actually READ. He was 3 years old. But he was miserable a lot of the time. He had meltdowns that lasted for hours and hours on end. I’m not exaggerating. It had been that way for awhile. Other times, he was a little sweetheart.
I had read so many parenting books. I was religious about checking out all the milestones for every month. I was so frustrated that he wasn’t meeting some of them, yet seemed ahead in a few others. One night out of complete exhaustion, I gave my husband one of the books to read. He flipped through the index and read about autism. He said “I think he might have autism”. I was so mad at him. I knew he was wrong. How could he just flip through a book for a few minutes and know that? The only thing I had ever known about autism was what I saw in the movie RainMan. Before you judge me too much here, please remember that the year was 1996 and hardly anyone knew much about autism. Back then, it was still considered a “rare” disorder with only 1 in 10,000 being diagnosed. Today some numbers put it at 1 in 100.
Of course now that I had 2 children, I had big plans for the Christmas card photo that year. I planned outfits that coordinated. We went to Kiddie Kandids on the night before Thanksgiving for the big photo shoot. I thought it would work for some reason, even though Alex wouldn’t go near Riley. I guess hormones and no sleep really do make you delusional. We didn’t even get far enough into it to try and put them together in a picture. Alex wouldn’t even go in the store. He wouldn’t have a thing to do with it. I ended up with no picture of him. Yet, my 9 week old baby girl posed like a little model. Go figure. This photo still cracks me up.
So while I was nursing a baby, settling into a new home, working two part-time jobs from home, having no money, entering the holiday season,and dealing with a 3 year old who couldn’t be in the same room as his sister, we proceeded with a visit to the speech pathologist. We were lucky to find such a great speech pathologist who was so gentle, but direct with us. She said that there was a huge discrepancy between his receptive speech and his expressive speech. That meant that he understood what was coming in, but couldn’t express himself to get the speech out. She said when there was that big of a difference between the two, that meant that something much bigger was going on and she suggested we take him to a child psychiatrist. I was stunned. Why would a 3 year old need to see a psychiatrist? I had never heard of such a thing! Again, I was sure that we would prove them all wrong after the appointment. I dutifully called our insurance for a referral and the appointment was set for December 31st. This was mid-December.
For some reason, things got a little better over the next few weeks. I actually got this photo which became our Christmas card. Huge victory!
I put together several home videos together for our families for Christmas. There were clips of Alex singing songs and laughing and smiling. I remember my Mom saying to me after she watched the tape that nothing could be wrong with such a cute little guy. I totally agreed with her. I just knew that was true.
Christmas was pretty happy for Alex. He seemed to do ok. I thought that maybe he had just had too many changes at once with his sister being born and moving so close to that. I was sure that now that he was feeling more stable, that things would come along.
He was very interested in what Riley received for Christmas that year. He loved trying on one of the hats that was a gift for Riley.
It was obviously a little big on her. lol!
He let us take some pictures of him while he was playing in his room one night. I remember that my hubby took this one and it was our favorite because it was just so “Alex”. We gave all the Grandparents copies of it for Christmas. He was (and still is) such a handsome boy.
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I remember the week after Christmas being a happy one. It was also unseasonably warm. On the morning of December 31st, we went out to the back yard to rake up all of these strange pods that always fell off one of our trees all during the fall months. Alex ran around outside and was happy. I knew that we would go to that stupid appointment and just put this whole mess behind us. We were going to speech therapy appointments now every Friday morning and he had made so many improvements. He was so smart. He was just a little behind on his speech. Big deal. Speech therapy was helping.
We decided to have my Mom watch Riley while we went to the appointment that afternoon. We said a prayer that the doctor would be able to see Alex for the wonderful boy that he was (and still is). Our prayers were answered, but not in the way that I originally hoped.
We had no idea that our insurance had referred us to an expert in the field of autism. Many parents go through years of appointments to get a diagnosis. Not us. He knew within minutes. He went through the motions of the testing. It was autism. No question about it. We didn’t realize that the time how lucky we were to get a solid diagnosis.
I can’t put into words what I felt. It was the most heartbreaking moment of my entire life. I couldn’t bear to think of my son having so much to deal with. I was devastated. It still hurts to think about it.
Our lives completely changed that day. In retrospect, I should have known. I had been in denial for many months. But that ended that day. If there is one thing that I’m very proud of, it is that we got right to work. Within a week, Alex was attending a special needs preschool program and on a waiting list for a school just for children with autism. I read all the books I could find (and there weren’t very many back then). We did everything that the doctors suggested. We spent years in speech therapy, occupational therapy, parent training groups, and met regularly with that same child psychiatrist. We met with a dietician, tried several therapies, went to social skills groups, and implemented many behavioral reward plans. Once Alex was able to attend the autism school, we got up at 6 every morning so we could get him to the bus in time for him to make the journey across town for a long day of school. Most Moms cry when their first Kindergartner goes to school. I put a 4 year old on a bus for a full day of school that had 45 minute bus ride each way tacked on. We were old pros by the time Kindergarten hit.
We’ve worked our behinds off since that day, and no one has worked harder than Alex. He has been amazing in every way. I can’t even begin to express how grateful I am for all that he has taught us through this journey. There are times where it still is difficult. I wish things could be easier for him. I’m incredibly proud of him though. I’m so grateful for the experiences we have had and I look forward to the ones that lie ahead.
If you want to know more about autism – check out this post. I also hope you will read my person-first language post at The Daily Digi.
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Want to play along? Do you have anyone in your life who has autism? What is Christmas like for them? All the holiday commotion can be really difficult for someone who needs routines and is easily overwhelmed. If you don’t know someone with autism, this could be a great prompt to journal about anyone with special needs, or a unique situation that your own family has faced during the holidays.
