I don't even know where to start on this. Our holidays were both wonderful & horrible. I am extremely blessed to have a wonderful bunch of friends who accept my boys and their disability & don't freak out when they do something 'autistic'.
Let me back up a bit. A few years ago, I started a new tradition of having an open house & tamale making day on Christmas Eve, because it was just too stressful & overstimulating for the boys to go to other houses. It had once been suggested, after a crazy Christmas Eve at my mom's, that perhaps it would be better if we came later & left early. This suggestion could have simply been well meaning, but I realized that they were suggesting that I accommodate a group of neurotypical adults. Why were they not trying to accommodate the children with a disability? I figured if I had an open house, people could come celebrate with us, have some fun, make some goodies, eat some goodies, the boys would have their own environment, their own toys & stuff; everyone wins, right?
This system had some glitches; the first being one of my sisters. The first time I did this, I had some friends over when the 'family' arrived, and my sister made rude comments about why were there other people there; wasn't this supposed to be for family, etc. I was embarrassed, yet tried to smooth things over for my mom, who hates stress & wants everyone to be happy. Last year I was told that the family was coming, only to be told at the last minute they wouldn't be there at all. This year, I told mom that everyone was welcome, but there was no structure, and if friends were there, my sister would be expected to be nice. Mom said they probably wouldn't come, then. Sheesh! OH! Let me also say that my parents and one sister live about a mile away from me, but the other sisters live in Kansas & San Diego, and I don't get to see them very often. They all come to stay at mom's for Christmas.
So this year, on Christmas Eve, we had an absolutely wonderful day! Many friends came throughout the day, adults & kids of all ages, we ate & drank & made goodies & no one freaked out over anything; it was heaven. I felt loved and so did my children. There was no stress, no expectations, and no family showed up.
On Christmas Day, my boys & I opened presents & had a relaxing morning. Early in the afternoon, I took them to the other grandparents house. My ex-husband may have pulled a disappearing act & chooses to have no involvement with his kids, but his parents are wonderful with the boys and I am making sure they keep up a good relationship with them. We were all welcomed in, everyone felt comfortable, everyone was accepting and accepted.
I stayed for a few hours & then left to spend the evening with the Kelly's. This is the family of my best friend Bill, who passed away 8 years ago. They said that having me there is almost like having Bill with them again. They are a warm, loving bunch, too, and I haven't missed a Christmas visit in the past 8 years. Again, a win-win evening.
The next day, the day after Christmas, my mom called & said the family was coming over about 1:30 pm. I don't want to dwell on this - lets just say it was 2:00 before they got there and they were gone before 3:00. In fact, David looked up at one point & said, "I thought they were coming over for Christmas?" and all I could say was, "I thought so too, son." I hadn't even gotten a chance to set out any goodies before they were all taking off. My one sister even left the special picture that David had drawn just for her - good thing I found it & hid it before he saw - he would have been crushed.
One of the biggest problems with having autistic children is the isolation. Because of some of the kids' behaviors, we just can't get out & do things like other families. Hence, we end up staying home a lot. A LOT. The isolation & the loneliness can be overwhelming at times. On one side, I had a ton of wonderful friends who made all of us feel loved & special; on the other, I had my immediate family make us feel like we were an afterthought & something to be 'gotten through' so they could get back to 'their' holiday.
I did talk about it with my mom - she tried to rationalize away their behavior by saying, "They just didn't think." I said that that was the problem - I had family that didn't even think of us, but friends who made sure we weren't alone. Mom said that next year will be different. I said that it will, because we're simply not going to expect anything from the family; therefore we won't be disappointed. I am willing to subject myself to a certain amount of my family's behaviors, but I will NOT tolerate them making my children feel like an afterthought.
The end of this year has brought about a lot of big changes for me - certain long time 'friends' have disappeared from my life, whereas other friends have come to the forefront as 'real' friends. It has been a year of re-evaluation, and a lot of changes; some extremely difficult, but for the better. I guess Richard Bach was right - in his book "Illusions", he writes, "The bond that links your true family is not one of blood, but of respect and joy in each other's life. Rarely do members of one family grow up under the same roof."
Oh, and a last minute thought on the isolation: Just because we know we won't be able to come to your holiday parties doesn't mean we wouldn't like to be invited anyway. Sometimes it IS the thought that counts.
