Mason's Smiles

Mason's Smiles

Wednesday, August 12, 2015

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. 



Thursday, August 6, 2015

2015 Summer Living - Mason update

There are a lot of happenings in Mason's life this summer, but I have not had a lot of time to write about them.  Why did no one tell me that two kids is a lot of work? (= Oh wait, I have heard that just a few times before.  Props to all you parents with more than two kids!! I don't know how you do it, but I am impressed.



Mason has had a really good summer.  He's has improved in his emotional regulation tremendously in the last year.  I love seeing more of my sweet, goofy boy and less of his disregulation tantrums. The biggest issue we are dealing with right now is still his sleep.  We have been using melatonin, which helps him fall asleep great!  It used to take him 1-3 hours to fall asleep.  The major problem is that he wakes up around 2-3am and sometimes does not go back to sleep at all.  That's when we get great pictures like this:


Just checking out the neighborhood at 1:49am.  Unfortunately, his lack of sleep affects his focus, regulation, and stress.  I feel awful when I don't sleep well, so I can't imagine being up for hours every night then being expected to perform at therapies all day all while working on overcoming a difficult neurological disorder! What a difficult thing to do for this happy kiddo.  We are going to try the time release melatonin tonight, so hopefully that makes a difference.  I wish I had known about it before though!

This summer Mason is continuing to go to Ken-O-Sha for his preschool. He will have 5 weeks total there spread over the summer. I was (of course) nervous of his transition to a different teacher and different room, but he surprised me and seemed to make that transition quite seamlessly.  We have loved every teacher and therapist that Mason has ever had at Ken-O-Sha, so I feel quite grateful for his positive start to school.  He is definitely vocalizing more than he used to for us at home and his teacher/therapists at school have also noticed it. The biggest behavioral issue he has at school is that he has a meltdown or hits/throws things when other students cry.  We see this at home a lot too when Jonas cries.  I don't know if it is a sensory sound that bothers him, if it is an emotional overload from others that bother him, or if it is something else entirely that bothers him about it.  His teacher said that it is getting better where he only cried for 10 seconds or so the other day when a girl in his class was crying.  At home, he is better than he used to be, but still throws things or tries to hit Jonas way too much when he cries. Mason actually loves to say hi and gets so excited to see the baby whenever I pick him up from school. It's super cute since he always puts his head in Jonas' carseat to say "baby!"  As long as Jonas is happy, Mason loves the baby. But as soon as Jonas cries, watch out for a double child meltdown.

Mason is also still seeing his Occupational Therapist and just added a Speech Therapist at Family Tree Therapies.  We can't say enough good about everyone at Family Tree. Besides helping him grow, they have taught me a lot about autism and loved on Mason. Since we want to start potty training soon, our OT has us working on some exercises to help his body be able to "go" on the toilet. These are things I didn't even think about Mason needing to work on!  I thought it was just a behavioral thing Mason needed to learn, but I am learning that there are definitely body issues to address as well. For example, when Mason sits (like he would on a toilet), his hips are turned so he doesn't engage his core muscle like he needs to in order go pee. We have been working on moving his hips to help him, but he doesn't last long sitting like he should since he has to increase his core muscle tone. This is just one of the many exercises that we are doing (and some that we forget to do :)).  This is my interpretation of what she explained to me, so any OTs out there reading this can correct me if I explain things awkwardly.  In our sessions, we are still working on many other things to help his body. Here is a link from an OT that explains muscle tone much better than I do: http://www.ot-mom-learning-activities.com/muscle-tone.html

We just started seeing the Speech Therapist there in June (since his speech is emerging a lot right now, we wanted to increase his therapies this summer since school is limited). She is amazing, and I especially love watching how she engages Mason. She is very good at setting strict expectations for Mason's behavior and enforcing it in such a nonthreatening way that he has less meltdowns than he usually would. One example is that Mason got stuck in a cycle of wanting the lights off during every therapy session.  If we would turn the lights on, he would turn them off or meltdown.  Watching her demeanor and how to spoke to him really helped me feel more confident on how to stick with my expectations of Mason.  We are also working on turn taking games where he has to wait for his turn and (try) to watch us communicate that it is our turn.  Mason has done well with this at certain times and struggled other times. She has noticed and told us how quickly Mason can learn certain skills when he is in the right place.  We started working on Mason putting his hand out face up when he wants an object instead of just grabbing it.  He picked up on it very quickly and does it unprompted many times now.

Our ST also brought up the idea of using an AAC (Augmentative and Alternative Communication) app for Mason. Basically this can help Mason communicate his needs by pointing to pictures on an app. It will increase his understanding of the communication process, which will hopefully help him gain confidence in communicating then will lead to him talking more. Before I knew about autism, I thought speech therapy was all about helping someone talk better.  Now I see that in order for someone like Mason to talk, he has to understand the communication process in general. I'm excited to try this with Mason because I feel like he is at a great point to start using it.  This is just the tip of the iceberg in explaining/understanding communication and AACs, so again, any ST can correct me or add anything if I explained it awkwardly.

The last therapy that Mason has added this summer is ABA (Applied Behavioral Analysis).  This is the main therapy used for people with autism. The goal is to teach useful and appropriate behaviors starting with the basics.  He just started this in July and goes every day for 3 hours.  The first goal was for Mason to bond really well with his one-on-one therapist, so that he is excited to come and play/work with her. He seemed to bond quickly with her.  The next goal they had is to request what he needs by pointing (they call this manding).  They are also working on him imitating sounds and actions.  Bascially, they have a toy/food item that Mason wants, and he does not get it until he points to it or imitates the sound/action.  At first they would just move Mason's hand into the point or action (fully prompting), but they are just starting to make Mason himself without prompting him.  Mason had a hard time with that yesterday and hit/had meltdowns a lot during the session.  It must be tough pushing him enough to get results but not disregulating him completely where he shuts down.  His therapist is happy with how he is doing so far.  The more Mason accomplishes these basic behaviors and when he will follow commands, then we can try to get him to do more complicated behaviors...like potty training. I'm going to be honest with you all though.  I totally see the importance and necessity of ABA therapy, and I am excited to see the progress in his behaviors.  His therapist is wonderful, loving, and treats him with the utmost respect as his own person. The difficult part for me is that it feels like you are training a dog.  When you train a dog to sit, you prompt/show them how to sit then give them a treat/toy.  Then repeat.  Like I said before, I get why it is important and necessary. It's already hard enough to emotionally deal with everything that having a child with moderate autism entails that when you feel like the therapy is similar to training a dog, it just doesn't feel good. I just had to get that off my chest. Maybe my ABA friends can give me more insight since I just understand the basics of ABA thus far.

We did have a week break from all of the therapies, which was necessary for (my) sanity.  My whole family stayed at a cottage in northern Michigan for a week.  He was able to spend time with grandpa/grandma, aunts/uncles, and cousins. Mason loves swimming, so he was able to swim most days.  We even went to Avalanche Bay water park where he went down water slides for hours.  It felt good to be with family and be on a lake.  Mason did really good with the big change all week. He did have one incident the first day though.  The biggest issue for Mason is learning boundaries in a new place.  He explored the cottage and we got him settled in his own room (thanks to my family for sacrificing so Mason could have his own space). He was relaxing in his room, so I went to our room next to his to unpack a little.  I checked on him a minute later and he was gone.  I freaked out, yelled to everyone else, and ran off looking for him. I saw him a few minutes later walking on the dock towards the water and onto the boat. Thankfully, we caught up with him there safely.  The sliding doors of the cottage stayed locked, and he had no more scary incidents the rest of the week.



It's a crazy ride figuring out the best ways to help our Mason grow, develop, and overcome so many challenges that autism brings him.  I feel good about what we have put in place for Mason even if it is hard and exhausting at times.  I hope this helps you understand a little more about what it is like to parent a child with autism.  I also realize that this is just my personal experience and covers just a fraction of what life with autism is like.  Please ask me any questions that you may have! Thanks for all your love and support as always!





 Just have to sneak a picture of baby Jonas on here too. (=