Judgement and autism

Let me begin by saying I consider myself a fairly strict mother. I expect my children to obey me, and to obey their dad. Does this mean they do it 100% of the time? No. They are children. They are learning. I also expect them to treat each other with respect and love, to clean up after themselves, not to complain about the food I put in front of them and to be thankful they HAVE food in front of them, and so on. Again, do they do this 100% of the time? Of course not. They are children. Children who are (mostly) still very young and learning.

In our society, there are SO many people who seem to think children should behave perfectly and get mad at them and judge their parents when they do not. I find this highly annoying.

I have an autistic daughter. I most likely also have a (very mildly) autistic son, although he has no official diagnosis at the moment. I then have an almost three year old who copies everything these two do. They are also at "hard" ages, ages where they are still learning a lot and obeying is not high on their priority list.

Lets give a basic example of our new bedtime routine.

*To give a little background on the change in bedtime routine and why this is such a big deal to Naomi, up until this last week Ruth and Naomi have been sharing a twin size loft bed in our room, but we decided it was time to graduate Naomi to the "girls room" and for Tobiah to get his own room, so we're moving stuff around and completely changing an already very difficult time of day for Naomi.

Tonight I found myself posting on Facebook about how I wish Naomi would fall asleep faster, and wished that Rich had not made it part of the bedtime routine that he be in there while she falls asleep since it will be very hard to break her of this. I found myself feeling the need to explain and even justify why it is "normal" for this to be an issue, and to explain why it is nobody's fault that changing routine is hard here. For an autistic child, routine is VITAL. They cannot function without one, and changes to the routine are taken very hard and take weeks, sometimes months, to readjust. This is "normal" for autistic children. Yet I realized that by me saying "I wish she didn't take so long to fall asleep, and I wish this wasn't going to be a pain to change later" that I was opening myself up to ALL the comments of "you're the parent, just don't do it!" or "it is only hard if you allow them to run your household".

This stuff flat out makes me mad. Did you all know that 1 in 88 children is on the autism spectrum? Did you know there are studies that point to the fact that it is even more common than that? Yet until you are the parent/primary care giver of a child with autism, you will never understand. Never. I do not care if your niece/nephew/grandchild/brother/sister/etc is autistic, although clearly those relations gives you a much better understanding of the dynamic than the general public, it takes being the one actually caring for these precious children day in and day out to truly understand what a challenge (and blessing!) it is.

Naomi is exhausting. Day and night. She is four now, and still never sleeps through the night. You heard me folks, never. I will admit that I am no longer the one that gets up with her (or the others for that matter) at night. I reached my breaking point about two years ago, as I suffer from extreme insomnia and have a LOT of trouble going back to sleep once fully woken up, and to top it off require more sleep than some. So yes, I make Rich do that part. He gets it. He understands how difficult she is. He understands the daily, hourly, sometimes every other minute tantrums that can last anywhere from 30 seconds (if we are VERY lucky) to 5-6 hours. Yes, 5-6 hours straight. I think Naomi's record for a non-stop tantrum with top of the lungs screaming the entire time was just shy of eight hours. Confession, there were a few points during that tantrum that I put her in her room, went in mine, closed the door, and prayed God would help her fall asleep so the screaming would stop. That tantrum was over two years ago and I remember it perfectly. That was the longest, but that type of behavior is common place in our house. I spend a good deal of my life redirecting Naomi. Explaining things to Naomi while she screams in my face. Telling her no calmly over and over while she screams at me and calls me stupid and "baby" (my children's version of the worst possible name you could EVER be called). Standing my ground, even though giving in would be easy. Naomi is like having ten children all in one. I don't like to focus on only the bad sides of autism, and Naomi is also the sweetest child who teaches me to live life in a beautiful way every. single. day of my life, but I want to give you an idea of what living with an autistic child can be like.

Now, when we change Naomi's routine is one of the biggest triggers for these tantrums. So think about that, at bed time, when I am worn out and ready for a break and just desperately want the kids asleep. Yeah. That right there? That is why I wish he had not included that in the "transition routine".

Naomi is not a bad child because she throws fits and doesn't listen hardly at all. She has many amazing things, even. Did you know that Naomi doesn't lie? Seriously. She doesn't understand how to lie. She's a sweetie. She is also so stinking awesome, something can be lost, we'll have no idea where to look, and she will know exactly where it is. How cool is that?! Granted she never knows where important things like keys are because she could not care less, but her favorite toy? Ruth's favorite toy? Yeah, we can count on her. Heck, the other day she kept insisting her new puppy was "in the couch", and we didn't really believe her. Guess where he came out when he woke up? Yep, out of the couch. Naomi is awesome, and I love her. She is exhausting, but she is worth it. She is loved. She is most definitely not a "bad" child just because she has a very hard time listening.

Likewise, Rich and I are not bad parents because she does not listen perfectly. We love her. We go so far out of our way to be good parents for her. Rich has gotten up in the middle of the night to put "medicine" (Vaseline) on Naomi's eczema. I've literally put my life on the line for that child (yeah, ask me about that one sometime). We do not take the easy way out by giving her what she wants. We are training our child to obey. She is just special and learns differently, responds differently, has special challenges (especially socially), and will likely grasp all this far slower than most. We are preparing her to be a functional member of society, autism and all.

So please, next time you want to say something to be about how easy it would be if I did things the "right" way, just do me a favor, and don't.