How are you guys really doing with Mason?

"How are you guys really doing with everything with Mason?"

I love it when friends or family really want to know how we are doing. I tend pause and think of how to describe how we are really doing. Then I usually respond with, "We are doing pretty good." In reality, we truly are doing pretty good. We have a wonderful support system and many great services in place for Mason. He is making some great progress. But in my head, I wonder if they really want to know. Do they really want to know what is racing through my head at all moments? 

So let me tell you how we are really doing. 

Parenting is constant. It's never easy for any parent. Parenting autism is constant with an extra side of chaos. It is constant problem solving, constant researching, constant advocating, constant questioning, constant unknowns, just constant everything.

To begin, trying to truly understand autism is all-consuming. It is so much more complex than I would have ever guessed. One thing that I do know about autism is that it's a neurological condition that affects every part of a person. And I mean every part...from muscle tone to sleep to hormones to anxiety to digestion to motor skills to communication to socializing to behaviors to EVERYTHING. Even experts in the field are constantly learning because new research is constantly coming. Is it hard wired in the genetics? Is it something that happens as the brain is developing in utero? Is it exacerbated by environmental effects? How can a simple parent expect to keep up in understanding this disorder if experts can't keep up? If I ever try to explain my small understanding of this complex disorder, I feel like I can never do it justice. I used to view autism as people who have behavioral problems and social differences...basically I thought they hit people and don't really care about other. People see bad or socially unacceptable behaviors like spinning, making loud noises, major temper tantrums, or hitting and assume the kid is out of control or the parents aren't doing their job. They think that they could whip that kid into shape with some rules and strict expectations instead of understanding that the behaviors could be out of a person's control. It makes me so unbelievably sad to think that people have and will judge my Mason on just his unusual or unacceptable behaviors instead of understanding how hard he has worked to overcome the neurological miscommunications and increased stress that affects every area of his life.

 

Next, recommended therapies and strategies are constantly thrown your way. Even when you go to a recommended therapy, therapists within the same field may disagree on the best way to treat. Then therapists from different fields have different viewpoints on what to do. How is a simple parent expected to make effective decisions on therapy when therapists disagree? Then it's trying to schedule all the different therapies with two working parents feels like a giant puzzle. When you get home, it's overwhelming to try to apply all the strategies from all the different therapists. Now don't get me wrong, we would be LOST without the guidance of Mason's therapists. As much as it sounds negative when I write about the overwhelming nature of many therapies, I would be much more overwhelmed if I didn't have these strategies. 

Don't even get me started on what Google can do. Researching and educating myself using Google has been amazing, but it can lead dangerous path of incorrect or unsubstantiated information. It's a constant battery of "new research on treating autism" or "miracle cures." As a parent wanting to hear my son's voice or the amazing thoughts in his head, I get so angry at the simplistic claims that one little thing can "cure" this complex neurological disorder. To play on parents' desperate desires is just plain wrong. 

One therapy or strategy may work for one kid with autism but not another. Then the role becomes constantly advocating for what your child needs because a therapist who may see your child once a week may not know him as much as you do. Building positive relationships with each therapist and teacher is absolutely vital because you have to work together to find the best strategies to help your child. Thankfully, we have always worked with wonderful teachers and therapists, which is not always the case for some people. I have a running list of teachers and therapists that have worked with Mason in the last year and a half that he has been getting services, so I can remember everyone. Currently, he has worked with 16 different people (and that is not counting paraprofessionals and other staff members). These people have all made a huge difference in his life.

We are constantly changing our expectations of what we thought parenting would be. Pretty much take your expectations and throw them out the window. Every single day, we constantly are reminded of all the ways our child is not "normal." When I go to a restaurant and watch the reactions of other people when Mason stims, hand flaps, and makes loud laughs/noises. The look on other people's faces when Mason tries to strip off his clothes in the doctors office waiting room and stim runs back and forth. When kind strangers try to talk to him, and he doesn't respond. When I see neighborhood kids talking to each other. Every single facial expression of others and social situation constantly reminds me of the differences. Holidays can be the hardest for me. I think when I dreamt about being a parent, I would dream about my kids dressing up for Halloween or getting excited for Santa. Those things aren't even on Mason's radar. I expected to hear my child's thoughts and his voice. It's such a different perspective to get insanely excited over one new word or one new communication technique. Many people also ask what Mason's future looks like. Will he be able to talk fully? Will he be independent? We have no idea. A typical parent expectation is that your child will someday become independent and potentially get a good job, get married, have kids, etc. We have had to change our expectations from this like many parents of special needs kids. My true expectation and hope is that Mason lives a happy life in whatever capacity that looks like for him, and I think he can get there! My favorite parenting advice is to give is to understand that as a parent, you cannot control your children. They are who they are. Accept that and work with them instead of trying to control them to fit into your "perfect" mold. I did not expect to parent a special needs child. It was something I knew could happen, but I didn't expect it. Even though changing this expectation is a constant adjustment, I wear it as a badge of honor without any shame.

So beyond trying to understand autism, organizing/attending/applying therapies, avoiding the incorrect information about autism, advocating for your child, and changing expectations of parenting, there is the actual taking care of your child. The day to day difficulties are dealing a lack of communication, emotional regulation meltdowns, motor skill delays, difficulty playing, and less independence. It's not just a lack of words that limits his communication, but it is an issue where he doesn't understand the whole process of communication naturally like neurotypical kids learn. When I see other kids, I tend to get amazed that they respond or comprehend even if they are too young to talk. Day to day and minute to minute our minds are always thinking of how to avoid triggers that may set Mason off or how are we going to deal with a situation that will trigger a meltdown. We have to keep a constant eye on Mason since he has no concept of danger. In public, he is always within arms reach, which means that I am always holding onto him. It's a tension that is constant. Thankfully our house is mostly Mason-proof, so he can't get into too much trouble here, so we don't have to be within arms reach at every moment. It's like having the independence of a baby in a four year olds body. Now it's not all bad! In fact, behaviorally, Mason is great most of the time. It's just that the bad behavioral issues stand out. The day to day benefits of taking care of Mason include a cuddly, goofy, and clever personality with a smile that can light up a room.

 

So when you ask me, "How are you really doing?" Honestly? I'm overwhelmed and chronically stressed. How can I not be? Unfortunately, the constant of coping with autism not going to change for Mason or for our family. I think it's extremely important that I come to terms with my new normal. Just like a brand new parent has to come to terms with their new normal of taking care of a baby at all times. Mason can't change his neurological composition, and I can't change the constant nature of parenting a child with autism. I have to change how I cope with my new normal. I think being honest about how I'm feeling is the first step to coping successfully with the chronic stress. Pretending or avoiding the fact that this is stressful is just going to add more stress.

The crazy part about this is that if I had the choice to go back to a stress-free life without Mason, there is absolutely no way that I would ever go back. The constant parenting of Mason has made me a better person and parent. The love I have for him is more than the stress of parenting. Mason is worth everything I have to give.