Good Days and Bad Days and Going Half Mad Days

I have never been a really patient person. In fact, my college roommate who I have known since second grade and I often joked with the saying "Patience is a virtue" by adding "Its a virtue that I do not have." Since having children, if anything, I think I have been forced to be more patient. Despite that, I still would not say that patience is a virtue that I have, or at least, a virtue that I have very much of.  As I get older and struggle with the goings on of everyday life being a lawyer and raising children, I think I have learned to get more and more patient.  

That brings me back to the title of this blog. As a parent of a child on the autism spectrum, I think I see the range of good days, bad days, and going half mad days than that of the typical parent. Before saying "Oh, my normal developing child has good days and bad days too so its not the autism," let me explain.

Every day brings something new in our household. Charlie gets done with school about 2:10 and I usually call Caroline about 2:30 to see what kind of day Charlie had. I do the same with Keller on the days she goes to school. With Keller, I don't think we have had 1 day all year where she had a bad day. With Charlie, you never know what you are going to get. We are fortunate, most days are good days, but we have our share of bad days as well.

So what does a bad day entail in our house. A bad day involves a defiant 4 year old who refuses to listen, touches his friends at school, and screams back when being told to do something. I am sure this sounds familiar to many parents with normally developing children. So, what is the difference. Well, one is that there is typically no way to tell what the trigger is for a bad day. In a lot of instances, we think bad days are triggered by the fact Charlie can't find the satisfaction point that he needs. With most people there is a fairly certain point in our psyche where we hit a point of stimulation pretty easily where we are satisfied, feeling at least decent, and can go about our marry way doing whatever we need to do.  With Charlie, it is not as easy to hit that certain point. Instead, there are times where he is constantly feeling unfulfilled and searching for that point of satisfaction so his body can relax. This leads to problems sitting still and his need to be constantly moving and searching for that point of satisfaction. In this moving, sometimes Charlie will run in circles, moves his hands in odd manners, and grunt.  This also leads to a point of agitation because Charlie becomes frustrated he can't hit that point of satisfaction. This agitation spirals into more fits and more agitation. 

Of course at 4 years old Charlie can't verbalize to us that this is what is going on, but we have a pretty good feeling that it is the issue. Finding the way to deal with this is a trick we are still working on. Charlie's teachers have had some luck with some things but we haven't found the magic trick, if there is such a trick. So, we take the bad days as we get them.

Other triggers for bad days are easier for us to figure out. The problem with those, however, is when one of those triggers hits, it is much more difficult for Charlie to get back to an emotionally stable point. I understand that all young children throw fits. Its an unfortunate fact of life. However, based on our experiences, I can deduce that there is a difference between a normal developing child's fits and a child with autism's fits because of children with autism's difficulty in coming off the fit. Take my children for example. Keller throws her fair share of fits when we tell her "No" to something. The fit lasts 2 or 3 minutes and she has moved on to something else. If Charlie throws a fit, we have to work to get him to the point where he can get himself settled and feeling satisfied. Again, this gets us back to the above point about struggles to get to the point of satisfaction. This is not typically a 2 or 3 minute process. The process typically involves some counting and some attempting to get Charlie to focus on something else that he likes. Often times, it is helpful to squeeze him a little bit so he feels pressure and can get some sensation. Don't yell at me, this is not tight squeezing, its just pressure squeezing that goes back to the above point about satisfaction.  Trust me, in going through this process, patience is needed and I guess that is why I am learning it.

Those are the bad days. With the bad days, typically come going half mad days because it is difficult to see your child struggling to find satisfaction.  Caroline and I can tell when Charlie is constantly moving and trying to find something. We do not talk about it but I think we both struggle with it note because we are embarrassed by his constant moving but because we hate to see our child having such a struggle just to find satisfaction. It is also difficult having a child you can't get out of a fit.  It is particularly difficult when this happens in public. Again, we are lucky that is hasn't happened that often, but it has happened and I have struggled to deal with it. Caroline handles that much better than I do but I am learning. My typical reaction is to just give up and go home and be mad about going home. The better reaction is to work through it and not worry about those around us. They can live with it. 

Well, that's the bad and the going mad, on to the positive. We have more than our share of the good days. As a parent of an autistic child in some ways our good days are easier to come by.  As parents of autistic children I think we celebrate our children's accomplishments more so than parents of typically developing children. Just the other day Charlie's speech therapist told Caroline what a good job Charlie was doing because he is doing well in answering "When" questions. Well, this was reason to celebrate. Last night I was eating pizza on the couch and Charlie came over out of nowhere and said he wanted a bite of pizza, which he has never eaten for us before, and he took a bite and came back for several more. Again, another reason to celebrate. Neither of these things are probably accomplishments in your typical household, but we are not the typical house and I'm proud when Charlie is going well at something or learning a new skill.

I believe this reason to celebrate arises because society puts the fear in us that our children may never ever pick up on these normal tasks and activities. As parents, we believe in our children with all our might and know that our children will buck society's trends. However, even with all this belief, there is always a little fear in us that society might be right and our child may never accomplish some of these things. Well, that fear is quelled when we see these tasks being completed and we celebrate. And you know, those celebrations feel pretty darn good!