I would be lying if I told that there are days that are easy. The truth is that there are just days that are less hard. Things that are simple for other families are struggles for us. In the beginning, being different from other families was difficult for us to accept. Seeing that other families could easily engage in the “normal” family interactions that we struggle through is frustrating. It makes us long for the things that we thought would be a typical part off our family routine. Simple things like eating dinner out as a family or sitting on the couch in the morning watching a show together. Most of the moments in our life need to be controlled. The control helps Grayson move through the day with as few triggers as possible. But living a life that is so full of control, so full of rules and boundaries and strategies, is exhausting for all of us. We struggle to understand and cope and move through the days; and we see that the people around us are struggling for the same understanding. In the spirit of autism awareness month I want to share our symptoms with you. I want to make sure that you understand that this is just one experience; our experience. These are the symptoms that are a part of Grayson’s Autism Spectrum diagnosis; and they are a part of the journey that we are on as parents. His symptoms, like many things in life, seem to be fluid. Just when we think we have it figured out, just when we believe that we may actually be getting our footing…they change. And so we change. You see this whole journey is about one thing; Grayson. We live (sometimes fight our way) through the symptoms and work towards a great acceptance for our new normal every day. We recognize that our life is perfectly imperfect. We are not afraid to show are battle scars, because we have earned every single one. We are doing this together, as a family. These symptoms may define Grayson’s autism, but they do not define our family. They help us set goals. They help us move forward. They help us understand the road ahead; prepare for it. They give us hope as they change an evolve; hope that if they can change then they can certainly improve…maybe even disappear. This information is not even a little bit “medical”. This is just one momma’s interpretation of the symptoms she sees her kiddo battling every single day…
Speech Delay. I’ve already spoken a lot about Grayson’s speech delay. This was really our first indication that Grayson was experiencing a delay. And his speech delay has continued to be a prominent symptom. In the beginning Grayson struggled with verbal communication. He used a lot of gestures to try to communicate his needs and his wants with us. At the time of diagnosis, Grayson was 24 months old and his speech was evaluated to be at the 12-18 month level. So he was speaking at just over ½ of the level appropriate for his age. Speech was a huge focus in the early part of treatment. We needed to provide Grayson the tools to communicate his needs to us. You see when grown-ups talk we use a lot of “extra words.” And those extra words complicated Grayson’s ability to understand and they hindered his ability to learn how to respond. So, we peeled away the extra words. Sometimes it sounded like we were a family of robots living together in this house. Our sayings and phrases become very simple and very regimented. We worked a lot on “I want” and “I need” sentences. We worked on replacing gestures and pointing by brining 2 options out to Grayson and helping him tell us in words which ones he wanted. We worked on introducing simple, one-step commands to Grayson. And we rewarded him when he was able to follow the command. Once Grayson was regularly communicating his wants and needs we began working on descriptive words. Instead of asking us for the car he could ask us for the red car. Over time Grayson started adding more and more words to his vocabulary. He started repeating phrases that were familiar to him; and he was using them in the correct context. Then the goal shifted to getting Grayson to use phrases or sentences that he was coming up with on his own; rather than repeating. A year after Gray’s diagnosis he was re-evaluated for speech. At the time he was about 45 months (3 months shy of 4) and he was speaking at a 30-36 month level. This is considered a HUGE turn around in just 1 year. Grayson was speaking way more that ½ of the level appropriate for his age. Today in the moments when we struggle to communicate with Gray, and believe me there are still many, we remind ourselves of this progress. We think about how truly blessed we are that he can tell us all that he has told us over the past year. Sometimes we will just be around the house after dinner and Grayson will come up with a 7 or 8 word sentence all on his own. Every single time it brings me to the point of tears. I think back to the days in the pretty recent past when I feared that he would never be able to communicate with me. I worried that I would never know his true wants and needs. And now he is not also communicating, but he is using that communication to initiate interactions with us and with his peers.
Inappropriate social interaction. Many of Grayson’s other symptoms are linked to social interactions. For example, Grayson struggles to appropriately interpret and respond to various social situations. He perceives emotions in a very particular way and sometime it is not the way that people are prepared for him to respond. The social part of an ASD diagnosis is the most difficult one for people to understand. Because on the outside you may see my son smiling and laughing and near his peers, but there is so much more going on under the surface? If you spend time with Grayson you will begin to notice that he is in a constant state of flux. You can almost feel an energy coming off of him. Sometimes we say in sarcasm that Grayson is “coming in hot”, but this is actually a pretty accurate way to explain. Grayson is always reeling, always buzzing. He has so much stimulation bottled up in side of him that sometimes he just bursts. The bursts can be good and bad. And both the good and the bad can be difficult to navigate.
- Over Excitement: Sometimes Grayson is so excited by something that he just needs to smother it. Perhaps this is playing with a particular peer, watching a specific show, holding onto an object that excites him, hearing a noise or sound that he wants to imitate, seeing a person who he is very attached to, and the list could go on and on. Grayson is a very happy individual and there are so many things that fill him with joy. But a lot of times the joy that he feels comes out in ways that do not make sense to other people. A perfect example of this occurred when we were traveling to Florida last month. We spent a little time in the Children’s Museum within the airport. And, during that time Grayson met a little boy in the pretend airplane. There were quick friends and they began working to fly the airplane. At one point this little boy made a loud screeching noise to simulate an airplane noise. Grayson liked the noise so much that he got very close to the little boy and repeated loudly. And then more loudly. And then even louder. And then so loud that the little boy retreated to his parents. So Grayson followed him, all the while continuing to make the noise. A little later in the day we ran into the same boy at the gate for our flight. Even though hours had passed (we were trapped at O’hare for 8 hours awaiting our plane) Grayson remembered the boy and the noise and repeated the noise immediately upon seeing the little boy. In the hours that passed without the little boy, we never once heard the noise and then as soon as he would see him, it was instant. I swear to you that if we would run into this boy today on the street; Grayson would see him and make the noise. To him this is part of his connection. He remembers the boy and the fun they had playing together and it triggers a memory. A memory that is linked to this sound. There are so many other examples just like this one. Sometimes it is the memory of a person, a place, a TV show a food. Grayson’s memory is unbelievable. Sometimes the hardest moments come from times when Gray is the happiest. In his treatment we refer to these excited bursts of energy in Grayson’s body as feeling “wiggly.” Wiggly is more or less a way of describing the energy inside of Grayson that that needs to get out. It is what causes him to be excited and it is what causes him to have bursts.
- Limited perception of other’s emotions. Sometimes Grayson holds on to past experiences and lets the past outcome dictate the current situation. For example, if a child at Grayson’s school tells him “no” he will associate that student with that negative word. Often walking up to that student and saying “no” for no apparent reason. He holds on to things and experiences and sometimes if inhibits his ability to leave in the moment and have new experiences. This trait is also indicative of Grayson’s inability to correctly perceive other people’s emotions. Sure, a month ago this child may have told Grayson ‘no’, but today the child is trying to initiate play and Grayson is not able to read these social cues and let go of the prior experience. There is nothing more frustrating for a parent than watching your child struggle without being able to intervene. As Grayson gets older and as his communication continues to increase we see him struggle even more with this symptom. You see as children get older it is normal for them to become more and more in tune to the emotional reactions and responses of other people. And, that is happening with Grayson. He seems to have more of an understanding that he has the ability to make people happy or sad or made based on his actions. However, his understanding and concern for this is inconsistent.
- Limited eye contact. This is an area where we spend a lot of time. A part of helping Grayson live within the real social world that is happening around him is to first get him tuned into that world. Sometimes Grayson is so stuck in his head; caught up in his own thoughts and expectations. Grayson will often talk at us without actually talking to us. When we speak with Grayson we ask him to “look into our eyes and tell us.” Sometimes we will need to ask him 3 or 4 times before he actually looks at us in the eyes. Other times he may never look us in the eyes. Sometimes Gray is so wrapped up in his own thought process that he just cannot leave his world and enter the social situation that he is in.
- Impulse. Up above I described Grayson as having an energy coming off of him; and when this energy builds up, it has to find a way out so that Grayson does not burst. Sometimes, when Grayson is happy, this comes out as a screech, jumping up and down, running around in a circle, shaking his body or giving a big hug. And sometimes these behaviors come from a negative energy burst and come out as a growl, a hit, a kick a push or a smothering hug. And then there are times when even the happy bursts come across with a negative gesture. These are the hardest to predict and the hardest to understand. With time we’ve learned to accept that we do not understand the true reason why Grayson gets his energy out the way that he does. And, because we do not understand why he is doing it; it is very hard to understand how we can change it. This symptom more than the others is the one that makes us nervous about peer interactions.
Anxiety. Grayson has a very difficult time making decisions and fully committing to something. I can often tell just by looking at Grayson that he is only partially enjoying something because his head is racing wondering if he made the wrong choice. Or sometimes his limited social abilities keep him on the sidelines of something that we know he would love to do. This happened to us at a birthday party just before Gray’s diagnosis. The party was filled with exciting car rides and a very cool carousal. Grayson stood again the wall wide eyed and smiling. Taking 3 steps forward and then retreating back. After the party all he could do was talk about the car rides, but in the moment he did not actually participate in the activities. This is crazy thing about Autism; you just never know what to expect. On a different day Grayson might have been right in there leading the charge. Sometimes the anxiety is short lived and within moments he can be back in the game and other times we just cannot come back from it.
On top of all of these symptoms; Grayson is crazy smart. Now, I am not a doctor so I am not going to say that his being smart is linked to his autism. However I will say that I think his intelligence and this energy that radiates inside of him are linked. It is almost as if his brain is always turned on, always processing. Even during the years when he was not communicating with us; I always got the sense that Grayson was taking it all in. In fact, before the diagnosis James and I used to joke that one day Grayson would open his mouth and a full sentence would come out. And sometimes today that is kind of what it feels like. When a long sentence comes out he looks at as if he has had that thought in his head for a very long time. It is almost as if he sighs in relief after getting it out.
Loving Grayson means accepting each and everyone one of these symptoms. And believe me, a lot of the time that is much more easily said than done. We have spent a lot of time over the past year learning about Grayson’s symptoms and trying to understand them better. Knowing all that we know now helps us to remember that so many of his behaviors are not in his control. And as a parent, sometimes this is the hardest part to accept. Knowing that there is something happening inside of your child, something that brings them pain and makes them feel confused and excitable and uneasy is sometimes just too much to bear. There are so many moments in a week that I take deep breaths and just try to find the strength to move forward. And then I remember that as hard as it may be to live with someone on the autism spectrum; it will never be as hard as it is for Grayson actually living with Autism. I would like to believe that in our almost 4 years with Grayson we have taught him a lot. We spend a lot of time learning how to help him. How to talk to him. How to redirect him. How to guide him. How to teach him about consequences. How to push him forward. How to let him push himself. How to create boundaries (and when to loosen the boundaries). And all this time that we have been teaching him and helping to propel him forward; he has been teaching us. He has taught me so much about patience and love. He has taught me that our boundaries for love and compassion are so much greater than we think. He has taught me that sometimes things are exactly how they should be; exactly how they were intended to be. Even if they may seem imperfect at times. He has changed what perfect means to me. Because he is perfect. My love for him is perfect. Even though there are a lot of moments in our days when neither of us behave perfectly. These are his symptoms and this is his journey. And I know it will change so many more times as we continue to move forward. And so we will change too. We will navigate the bumps and we will continue to redefine perfect. Our life is perfectly imperfect; but our love for each other will always be perfect.