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.

Simple conversations can have so much meaning.

Simple conversations can have so much meaning.

When I picked up Mason from school today, one of his summer therapists chatted with me for a few minutes. She talked about how she has only worked with Mason for five weeks this summer, but she is so impressed with how much his speech has improved. He's vocalizing needs, labeling things, following verbal directions, and just verbalizing so much more since the beginning of the summer. She also mentioned that his behavior is really good. He has very little disregulation unless another student is crying. I told her that during his first at-home speech therapy and OT sessions, he would sometimes scream for 45 minutes of the appointment. She was surprised and impressed at the growth in the last year. She then told me that she looked at his IEP and saw we will be updating it in October. She told me he already meets his goals that were set. Then we talked a little about the next few years. She mentioned that since he has a November birthday, he will have two more years at preschool. She said that with a lot of growth, he may even have the skills to go to his home district for their special education services in the next few years.

It was a great conversation to have. I have a lot of great conversations with his therapists and teachers a lot (and of course hard conversations). As a teacher, I sometimes think nothing of updating a parent on little things. It's great to tell a parent good progress, but I don't always think of the impact it could have. As I was driving away processing the conversation, I was tearing up and trying to figure out why.

One of the harder things for me with Mason's moderate autism diagnosis is the lack of a true prognosis. Even the testing they do doesn't really tell a full, true story. For example, Mason may have measured at a 21 month level of receptive communication the last time he was testing. The issue is that in some ways he is much higher than a 21 month old and in other ways he is much lower. Now while a gap is true of all kids, I believe that kids with autism are going to be much more extreme with this gap. I've come to accept that no cognitive test or ranking is ever really going to be able to tell us what Mason knows. Because the neurological part of autism affects the brain and body's communication, he may not be able to show a lot of his knowledge. Again while this is true of many kids who don't test well (I see it with my students), I think this is even more extreme for nonverbal and low verbal kids with autism. If Mason is asked to point and say numbers, he will probably not be able to show it on command. Let me tell you, I have seen this kiddo say and point to many numbers when his body and mind are in a good place. (More on this large topic/soapbox another day 😊.)

All these thoughts led me to think about Mason's future. I'm a planner and a future thinker, so it's always in the back of my head about what Mason's future holds (like many parents think about). I don't know if he will need to live at home forever, if he will need 24 hour care, if he will need an assisted living situation, or if he will be able to live independently. That's a pretty wide range of possibilities. I obviously hope for him to have an independent life. Hearing from this therapist that he made so much progress in the five weeks that she saw him and that in a year or two maybe he could go to his home district, gave me a little piece for future hope. I don't know why this conversation did that for me today, but it makes me think about the impact of words to others. Whether those are the words I use talking to my students, the parents of my students, my friends, my family, or especially the words I use with my non/low verbal child with autism. What you say is important. It can be mind altering and life changing.