Sometimes feels like there's not a lot going on with Mason, but sometimes we forget how much really is going on

Time for a Mason update!!

We've fallen into such a routine with Mason's schedule this school year that it's sometimes hard for us to notice what's new with Mason. This is why I write these updates, to remind myself. Sometimes we fall into a rut of thinking little progress has been made. It's like when someone is losing weight. People may not notice their own major body changes because they see themselves every day, but when they see someone after a month, that person may see major changes. A lot of hard work and sometimes hard to see major changes. Others can see it and feel excited about it, but our own perception is sometimes skewed.

First, we are sad that Mason's morning nanny will be done on Wednesday. She is an OT student who is starting her clinicals. We were sooooo lucky to find her. If anyone knows of someone, we are looking for someone to nanny Mason and bring him to therapy starting in August.

ABA is Mason's daily morning therapy. We are super sad because one of Mason's therapists there is advancing her education and position, so she won't work with Mason as much. So happy for her, but she has a special bond with Mason. For us as parents, obviously progress in Mason's abilities is important, but when someone creates a special bond and truly understands your non/low verbal autistic child, it is more important than anything else. We are grateful that we have had some special people work with Mason in his few years of therapy. We get videos of their sessions every few weeks, so it's exciting to see tangible progress. That's the great thing about ABA. They set such detailed, specific goals and measure them daily, so results are easy to see. Like the goal of getting Mason to wait and not touch everything around him. They were having trouble setting stuff up because Mason grabs everything within a millisecond. They set a goal of saying "wait" where he couldn't touch the objects for 3 seconds and another one where he had to wait while standing for 3 seconds. They've been working on that for a long time. It's been helpful because now I know that Mason understands what I mean when I ask him to wait. He says "wait" and we have him count. He also has less meltdowns while waiting in general. 

He still goes to family tree once a week for speech and occupational therapy. We love the relational and child-centered therapy. I don't know the formal name of the approach. 😊  It's a very different approach than ABA, but I see the benefit of both therapies. I'm glad we can have Mason in both of them. They definitely use the idea of "presuming competence," which is believing that while Mason can't talk very much, we believe that he comprehends more than he verbalizes. We love this approach because we can see the intelligence in Mason even if he can't always show it in typical ways. They use a lot of writing words on a board when asking Mason to make choices. One example is when they will write the words to two rooms on the board, they ask him to point to which room he wants to go to. He has improved in using this communication. They also work through problem solving and try to have him involved in the problem solving process. Last week, the batteries died in his favorite lantern. Many times he would just get mad and throw it. They helped him understand and work through the process of getting batteries and fixing it.

His preschool has been great too. He does well with the routine there and has been gaining skills. Really, the exciting news has been that he peed on the toilet AND pooped on the toilet. Seriously. Big news. Imagine putting your child on a toilet for years asking him to pee then having some pee finally come out after two years. Then pooping the next day. Maybe he will be potty trained in a few years. We really love all the people he works with at his school. 

There is so much more that happens at all of Mason's therapies and school we don't even know because we aren't with him, and he can't tell us about his day. We appreciate all the communication we get from all those who work with him.

At home, Mason's had a great last few months. His sleep is better than it was a year ago although he definitely still has issues with night waking. He is saying a lot more two word phrases that is helpful in understanding what he wants or needs. A lot of, "No carrot" or "yeah cookie." (Surprise) It's helpful that he can use no and yeah to tell us what he wants or doesn't want. His apraxia can make it so hard when he is trying to tell us what he wants, but all his word sounds like is a noise like "Ta" or "Fo." He looks at us and wants so badly for us to understand what he is asking for. It feels so sad to have no idea what he is saying, which gets him so upset. He repeats it over and over trying to get us to understand. How frustrating to feel trapped and not able to explain what you want! It is great when I figure out what he is asking for then say it out loud to him. He gets the biggest smile on his face! Mason has been playing great lately. He loves naming shapes, colors, and numbers. He's loving puzzles, swings, tunnels, slides, and play doh. Going outside is his favorite, and the fenced in yard has been amazing. Happy Mason is so fun. Thankfully, he has had overall mostly happy days. Meltdowns still happen daily, but happy days with some meltdowns are so much better than meltdown days with some happy moments. Hopefully this wave lasts a while.

One big concern we are dealing with is that Mason probably has a seizure while at school one day. Sometimes seizures can be hard to tell in some kids with autism because they have different body movements and zone out "in their own little world" more than typical people. A few weeks ago, his school called us to explain that he had some odd behaviors/eyes rolling in his head that seemed like it could have been a seizure. We went to his doctor and explained what happened. She told us that it definitely sounds like it was a seizure. We are now in the waiting period of getting an appointment with a neurologist to check Mason out more. For me, it feels surreal because I didn't experience it with Mason. Maybe it's a coping mechanism because that is a scary unknown. I'm grateful for everyone at his school who knows Mason so well to know that what happened was not typical for Mason, so they let us know what was going on. We've not dealt with any physical health concerns with Mason before, so it's another specialist to add to the list.

And to think that when I started writing this, I didn't think we had a lot to update. There's always something going on. We are just taking everything day by day, week by week. Holding on during this wild roller coaster. There are so many unknowns with Mason and his autism. What school should he go to in the future? Should we look into schools with specific autism programming? Who can nanny for us? How are we going to juggle his schedule again next school year with both of us working full time? Will he every talk? What is it going to be like when Jonas is older and getting in Mason's business more? Should we keep on the same track with the therapies we are doing? We definitely live in the moment to enjoy our time every day snuggling and dancing with Mason, hearing him talk to us more instead of wishing for things to be different or easier. And, of course, loving on our sweet, goofy Jonas as well. While at times the stress of the unknowns feels overwhelming, it reminds us to be present in our lives and enjoy the good moments.

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.

Mason's amazing dad and disciplining/putting up boundaries to an autistic 4 year old

Can I just talk about how amazing Mason (and Jonas') dad is?? 

Now all you may know about Zach is that he's good for a good inappropriate joke. While that may be true, I sometimes think that no one sees the amazingness of Zach, especially in how he parents Mason. To understand Zach's amazingness, you have to understand a little about disciplining and putting up boundaries to a 4 year old with autism.

One of my biggest struggles in parenting Mason is knowing what boundaries to put up and what to let go. I think this is a common struggle for all parents as well. From simple things to sitting at the table during dinner and cleaning up your toys to more complex things like how to respond when he hits.

There are a few extra challenges for a parent of a nonverbal autism kid. Before we knew of Mason's delays and autism, we started trying to discipline and give typical boundaries to a two year old. It always ended in major meltdowns, and it didn't seem to help or change behavior. When he first was tested at almost 2 and a half years old, his receptive communication (what he hears/understands) was measured at 9-12 months. Of course he wasn't responding to us! It's always been hard to know if he comprehends the boundary we are putting up. 

Currently with Mason, he has grown a lot in his communication, so he understands most boundaries we put up. We tell him many times in a day, "No more marshmallows." "Sit on your butt, no standing on the counter." "All done with the swing." Since there is no way he can explain what he thinks about this boundary, he tends to say "no" then scream/hit when we put up a boundary he's mad at. Now if it's a real big deal to him, melting down occurs where there is hitting, kicking, screaming, etc. Then there are potential sensory issues going on as well. If he is overwhelmed or overstimulated because of the environment, the limited communication he has can get thrown out the window because he is under so much stress from his body being off. At this point, many describe it as his body going into a fight or flight response because the stress level has gone up so high! For example, when we say, "All done swinging." He can't tell us, "But I really want to keep swinging. You don't understand." He's trapped without a way to communicate, so his body goes into fight mode. This is when he is disregulated. This is why routine is so important because he understands the boundaries within his routine. There's many more little factors that go into every little boundary for a kid with autism, but you get the point. (:

In teaching anything to Mason, it's finding the fine line of pushing him but not disregulating him. Whether it's teaching him to put his coat in the closet when he gets home or pushing him to say certain sounds that are difficult for him, little things can disregulate him. Minor disregulation happens often. The big thing is finding out how to help regulate him when he is disregulated because, guess what, even if he hits us and thrashes until we are blue in the face, we are never going to let him run in the middle of the road. This is where my awesome husband comes in.

When Mason starts to become disregulated, I want to give up or give in. I've become more aware of this lately and realizing how I need to change this. I get frustrated and feel like there's no way to get him out of his disregulation spiral. Zach is amazing at talking things through with Mason in his disregulated state, which can help him get past it at times. He gets on his level, talks so calmly, and communicates so clearly in a way that Mason can understand that Mason starts to calm and regulate again. Mason's aunt Erin, grandparents, and other special people in his life have this gift as well, but Zach has such a special touch.

This became really apparent to me at the East Kentwood Face-Off for Autism event. This is where the Varsity hockey team and school created a fundraiser to bring awareness to autism and to raise money for the autism classrooms within the district I teach. I was really nervous because we were the host family at the event, and I wanted it to go smoothly. Mason was going to meet the hockey players and get a signed jersey from them. Mason struggles in new public places because he doesn't understand where he can and cannot go. At the event, Mason wanted to go on the ice (understandably). That's the only thing that was on his mind as we walked in to meet the team. As we walked into the locker room with all the hockey players sitting and waiting to give Mason his jersey and puck, Mason was frustrated because he couldn't go on the ice and didn't pay attention to meeting the team. I felt bad because I wanted Mason to show appreciation and show his sweet self. I was just going to leave and accept that this is just how Mason was going to act. Zach knew that we could push past his small disregulation and coaxed Mason to give high fives to all the players, which he even gave them some sweet smiles. Back in the stands Mason was still disregulated from wanting to go on the ice, I just thought we would have to leave. Zach pushed through his now major disregulation/melt down, and Mason gave us a good 10-15 minutes of happiness in the stands. This is a huge victory! I would have just left, but staying shows Mason that when new boundaries are put in place, he can accept and get past them. It also shows him that he can calm from a disregulation state.

Zach is the best father I could ask for to my boys.

Thank you EK Face Off For Autism for your acceptance and for bringing awareness to this difficult disorder that affects so many kids.