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!

The Call-The Dad's Story

There is a new story out this week on a new study that has found that pediatricians are dismissing the parents of their patients concerns about their children's growth.  See Story Here. As I will cover in a future blog, these parents should go with their guts and push their doctors. Early intervention works wonders as we can attest to with Charlie. I will say though, we were lucky. We didn't have to push our doctor. She was astute enough to catch it on her own.

Reading the story got me thinking back to August 31, 2012. Charlie was supposed to have his normal 18 month appointment on August 31, 2012. We were a couple of months behind on that since Charlie was actually 20 months but that wasn't a big deal. For all we knew, it was just going to be a routine appointment and we would only get news that all was well. Of course, it didn't happen that way.

I remember it like it was yesterday. I was sitting at my desk working on a brief when my phone rang. I saw it was Caroline and picked up the phone expecting her report that Charlie was developing normally and I was excited to hear where his height and weight compared to other children his age. Of course, it didn't happen that way.

I picked up the phone and could instantly tell something was wrong. Caroline was crying and her voice was stuttered. I quickly asked what was the matter hoping Caroline was just overreacting about something. Of course, it didn't happen that way.

The news. Caroline told me that Dr. Lowe, our pediatrician, thought that Charlie was autistic. Turns out that Charlie massively failed the MCHAT that should be routinely taken by parents at their children's 18 month appointment. This news shocked me. I didn't know how to respond to Caroline. My instant response was "How does she know at this age? How could she know at this young age? She must be wrong." I must admit that I was even mad at the doctor for telling me something was wrong with my child.

However, truth be told, I think I had known for a couple of months that something was not quite right. Caroline and I never talked about it at the time to each other but we both had our private concerns. Charlie had cousins and friends close in age to him. It was pretty clear that Charlie was not developing as quickly as those peers. But whenever that topic came up, the response was always the typical "Every kid just develops at their own pace." The questions still lingered for me. I remember laying on the couch privately one evening and looking at what the signs of autism might be.  O was worried by what I found. What I was saw was that things Charlie was doing and wasn't doing were things that were red flags for autism. Charlie didn't have much language.Charlie didn't play with toys appropriately. Charlie didn't point for things he wanted. Charlie didn't bring toys to us that he wanted to play with. But, there were things that Charlie did do that signaled it wasn't autism. Charlie made eye contact with us. Charlie was a smiley child. Charlie was a social child. Given these things that he was doing right and my fear of autism at the time, I concluded it must not be autism. Since I had reached that conclusion, I was too scared to even bring my concerns up with Caroline.

Back to August 31, 2012, I was stunned when I hung up the phone. I didn't know what to do. I have always had a very close relationship with my parents and my brother. I decided I would call my brother first and share the news with him. Eric's daughter is 6 months older than Charlie so I figured he would understand. I got a very supportive response from Eric but I still wasn't right. I then decided to call my parents, including my Mom who tends to be an over-worrier (sorry Mom), and let them know. They too were very supportive though I think we were all in shock. I remember my Mom's words were "if he is autistic, he is autistic. We will just work with it and love him anyways." The right words for a Mom to use, but, of course, I was still in shock. Next I talked to a co-worker who's sister in law had experience teaching AU classes.  He was also supportive and assured me all would be ok.  But, again, I still was in shock. At that point, I didn't really even knew what autism was. Sadly enough, and I will admit this, at that point in my life the only thing I knew about autism was from the movie Rain Man. Boy, was there so much more to learn.

Having received this news, my work day was over. August 31 was the Friday of Labor Day weekend. I was working on a brief that I needed for a hearing the following Tuesday and I was almost done with that brief. But, chances of me being able to concentrate on that were over. I explained to the partner I was working with on the case what had happened and explained that I would complete the brief by the time of the hearing. He too was supportive, but I still was in shock. I decided to go home for a little while so Caroline and I could talk about it, but truth be told we didn't know what to say to each other. We were both in shock.

Eventually, I came back to my office and just stared at my computer screen for awhile, not really knowing what to say or do.  After awhile of that, it was time to learn. I am a firm believer in that google is a terrible thing for any diagnosis, but I was ready to learn. Thankfully, there are some good and quick resources on the internet for information on autism. Even more important than what I found on the Internet, I remembered that I had noticed on Facebook that I had a friend who was also an attorney who had a child with autism. That afternoon I called him just to ask questions. It was at that point that I started to learn what a good and supportive autism community exists in Guilford County. This friend was willing to talk with me and provide information about what was out there for us to learn and use. Not only was he willing to talk on the phone, he instantly suggested that Caroline and I have breakfast with he and his wife so we could talk about it in more detail.  This was one of the first major turning points. Instantly learning there was a support system of our peers in place was a game changer. Quickly I learned that we weren't alone. There were other families in positions similar to us out there who we could compare stories with and get advice from based on their actual experiences with a child who had similar differences as our child.  If you haven't been in that situation, you can't really know what a big deal and a comfort that is to a family going through this experience.

After getting the comfort that we weren't alone, it was time to mobilize. I was a month away from running the Chicago Marathon. I did a little checking and found that OAR, the Organization for Autism Research, had a group running the marathon. I contacted them and asked if I could join the team. Of course they were glad to help me.  The reason I found this an attractive possibility was that it provided me with an avenue to tell our friends and family the news about Charlie in a manner that didn't ask for sympathy but rather asked for support. After joining the OAR team, I sent an e-mail to friends and family to explain what had happened and to ask for their financial support in raising money for OAR through my upcoming run.  What an experience this was. Again, we didn't receive sympathy, which there was no need for. Instead, we received an outpouring of support in the form of e-mails in donations that topped $2,000.00 in less than 2 weeks. Again, Caroline and I learned, we weren't alone.

This has gotten very long but that is only because I have very vivid memories of August 31, 2012. I can wrap those memories up into three points of advice.

 1. Don't be afraid to confront concerns you may have about your children. That fear is not going to help your children so don't ignore it in hopes that it will disappear.  Instead, addressing the concerns and tackle the problems that may exist.  That is really what are going to make a difference. As I look back now, the anger that I had directed towards Doctor Lowe on August 31, 2012 has taken a 180 degree turn and I have great gratitude that she had the foresight to spot Charlie's issues.  It is because of that foresight that Charlie has been in therapy since a very young age and has made the great strides that he has made.

2.  Know that if something happens you will not be alone. Unfortunately most families don't go through life with a perfect scorecard of things happening to them. One of the best things Caroline and I have done for our sanity and for Charlie's well-being since his diagnosis has been getting plugged into the local autism community. In our case, the autism community is a great way to learn what resources are out there and how to set your child up for the most success and the best programs,.  Not only that, it is also a community where you can share experiences and stories with those in similarly situation positions. What value there is to that.

3.  Ask for support, not sympathy.  Bad things happen to us. That is unfortunate, but also true.  It would be great if we could just close our eyes, feel sorry for ourselves, get some sympathy and the bad things would go away. That would be great, but the world doesn't work that way. Instead, I think its better to ask friends and family members for support when these things happen.  Use that support to be active and deal with the bad things that happen and make the most out of them. It has certainly worked that way for us as we are almost 3 years from Charlie's diagnosis and with the support of family and friends we work through roadblocks every day and see Charlie flourish.

One for One, Surprise Eggs, Mater, and No More Tonsils

Karma is a bleep. Most anyone who knows me knows that I am a picky eater to say the least. It is not that I want to be a picky eater, its more there just don't appear to be all that many foods that I like. I wish I was an epicurean. I wish I liked salad. But, I don't. I've never been able to narrow it down why I don't like many foods. With some things it is taste. With other things, such as beans, its definitely texture. In that regard, I have memories over the years of what it felt like to have the rubbery feel against my teeth when I tried raw octopus in Venice. I also have memories of sitting outside in the rain being told to finish my dinner when my parents had enough of my not eating and chucking the food off the porch.  Truth be told, I was a handful for my parents when it came to eating.

That brings me back to karma. Charlie has definitely inherited my picky eating style. Picky eating is not uncommon with autistic children so I guess we shouldn't be surprised given Charlie apparently has a double whammy between my genes and autism.

Charlie started out really well with eating.  He would pretty much eat anything we put in front of him until he was about 16 months old. We have pictures of Charlie covered in Spaghetti and memories of Charlie eating Caroline's country style steak.

At about 16 months all of that stopped and he refused to eat much of anything. As he entered this phase, Charlie took to putting foods up to the spot between his mouth and nose to decide whether or not he would eat them. It sort of looked like he was smelling the foods to determine if he would eat them or not.  But, it wasn't that. He was doing something else and we still haven't been able to get him to tell us what he was doing. 

For the past 2 or 3 years, Charlie has had a lot of meals that have included his staples of Potato Chips, Popcorn, Ritz crackers, Goldfish, Cheese Quesadilla's and Tortilla Chips (his favorite being "Pepe's Chips" from Rio Grande, Grilled Cheese, "Muffins in a Bag," Waffles, Pancakes, French Fries, and Cupcakes. We have done our best to intersperse these items among meals as best we could to make meals varied. In that light, we referred to round hash browns as "Round French Fries" and square hash browns as "Big Square French Fries" to broaden Charlie's choices a little more.  Unfortunately, that was all that was working for us.

Fortunately, over the last six months or so we have seen progress in Charlie's eating habits. Some of that can be attributed to Charlie getting his tonsils taken out in November. Luckily for us, Charlie's speech therapist noticed this Fall that Charlie had huge tonsils. We had never really just looked in his mouth, but after being told about them, it was undeniable that he had abnormally large tonsils. In fact, his tonsils were so large there was little room between them for the food to go down. We now think that those tonsils certainly had something to do with Charlie's pickiness and we have seen an expansion in what he will eat since then. One thing that is for certain is that the removal of Charlie's tonsils put a complete end to what was a rather large drooling problem.

But, the tonsils certainly were not the only other issue when it came to his eating.  Taste and texture certainly also came into play.  We have seen that a lot of the initial growth in Charlie's eating habits really started with school. Charlie started eating a lot more at school for his teachers than we could get him to eat at home. Charlie would eat green beans, strawberries, carrots, and grapes at school and not come anywhere close to touching them for us at home. 

Finally, over the last two months something has clicked and we are having success with these items, and others, at home. We attribute a lot of that growth and success through the use of rewards paired with eating so I thought I would share them as the point of the blog. The most successful tactic seems to be the "one for one" strategy where Charlie gets 1 bite of popcorn or some other preferred food whenever he will eat one bite of some food he'd rather not eat. The other tactics we have had a lot of success with include letting Charlie watch his IPAD while he eats and having an overall reward if he makes a happy plate. There is a video on Netflix of Mater from Cars that Charlie must have watched 50 or so times, but sure enough he eats when he watches that. If its not Mater, then Charlie likes watching the Surprise Egg videos on Youtube for some reason. The only thing these videos include is a person opening an easter egg to see what is inside, but it for some reason really excites Charlie and his sister. In fact, we have taken advantage of that fact and now allow for a "Surprise Egg" as a reward when Charlie makes a happy plate (meaning he eats everything on his plate). Just this morning the first thing Charlie said to me when he woke up was "I got a Surprise Egg for eating all of my dinner" [which included ham, green beans and grapes].

These tactics have been a breath of fresh air for us. Indeed, just last month Caroline, Charlie, Keller, and I all sat down and had a dinner where the four of us ate the exact same things (pork chops, corn, and something else I forget) for the first time. It was amazing and was the most exciting and relaxing dinner we have had as a family. So Charlie may still be picky, but it appears he's on his way to eating more than I do and that is something good!

I'm Sorry But I'm Not Sorry...

I have put some thought into putting together a blog for some time now about my family's experience raising a child on the autism spectrum. So many things come to mind on a daily basis of things we come across that so many people in similar positions must also be dealing. Our child is only 4 but I feel we have had enough highs and lows with his autism, many more highs than lows I would add. Therefore, I thought maybe it would be a good thing to put our experience out there to show others that they are not along in their thoughts, feelings and experiences.  I couldn't think of a better day to start it than World Autism Awareness day.

As a matter of background, I am the proud father of a four year old boy, Charlie, who happens to be on the autism spectrum. I am also the proud father of a two year old little girl, Keller, who from all signs so far appears to be a normally developing ball of sass and I am the proud husband to my wife Caroline.

From what we can tell at this point, Charlie is on the higher functioning end of the spectrum. He has some language delay but he is fully verbal with a large vocabulary. Most of his issues, if issues is the right word, are sensory issues dealing with his ability to get a sense of satisfaction. This leads to symptoms similar to what I would consider hyperactivity and trouble concentrating on assigned tasks. If anything, Charlie is too outgoing and too excited to try new things, meet new people, and interact with his friends. What this means is that a lot of times, Charlie is not the best at sitting calmly in a group setting. It also means that Charlie will get right in his friends faces to get their attention, will call out answers in a group session when it is not turn, and  will touch his friends in a non-aggressive manner to make sure he gets their attention.

I understand that my child's personality traits can be frustrating for a teacher who is otherwise trying to manage a room full of 3 and 4 year old children. And, I understand all teachers in the preschool realm, especially in private settings, do not have experience with the world of autism. But, I don't think expressing the frustration with the children or the children's parents is the right way to deal with it. Rather, I think its time that people in these position's start learning about these and other traits of autistic children and learning how to manage the traits in a school setting. More times than I would rather remember, I have asked Charlie's teacher how he has been in class or some other group setting and rather than hear that he had a good day, I have heard statements like "He just won't stop touching so and so" or "He just won't sit still in group time." Or we have heard "Just tell us what we need to do with him" in a frustrated tone. I have wanted to respond, "Sure, its easy just do this, this, and this and he will act like a perfect angel." Unfortunately it doesn't work that way and there is not an easy or automatic fix. Instead, its a process, and admittedly, a sometime frustrating process to try to get Charlie to understand what is appropriate behavior and what is not appropriate behavior. But, you know what, its not Charlie's fault its a frustrating process. And, as Charlie's parents, its not our fault that it is a frustrating process. Instead, its just something we have in our life so its something we need to work with.

Alas, we have been fortunate because Charlie is now in a setting where his teacher has not only the magic touch with Charlie, but also the magic touch with us as Charlie's parents. Since moving to his current pre-school, Charlie's teacher, Sarah Althoff, has never made us feel that Charlie is a burden on her or her classroom. Everyday when we drop Charlie off, we are met with a smile and excitement to see Charlie. Everyday when we pick Charlie up, Charlie is excited to come out and we are told the positives of his day as well as the negatives of his day but, again, it is always done with a smile and without making us feel like he is a burden in any way. Having had some experiences we have had in the past, its amazing what a difference this makes in our life.

We are lucky to have found such a wonderful setting for our child and for us. Unfortunately all families aren't as fortunate. That can change though.  Through all of our frustrations, I do not think for one minute we have been in a position where the teachers we have dealt with wanted to intentionally make us feel bad or wanted to be rid of Charlie. Instead, they just wanted to understand. So whats the solution? Its a little education and a little patience. Sounds doable to me. Its certainly worked in our case.