As the Days Get Shorter

It's been a little over two months since my last post. I checked the date and I was surprised by that. Time goes by so quickly!

There have been many changes, a lot of learning but still a lot of unanswered questions. We were able to meet with a team at Zayne's school for his Evaluative Team Report (ETR). The team built a plan where Zayne will receive Occupational Therapy and Speech Therapy in addition to his regular classes. He is included in an integrated classroom, where there are "normal" functioning children as well as children like Zayne who need additional support. Thanks to COVID the classes are small (less than 10 kids). In addition to the preschool teacher, there is a student aid to help.

Zayne began preschool at the end of October. He attends Monday through Friday, half days. We made the decision to have him ride the bus in an effort to improve his independence and to help him manage the transition of being away from us. We requested that the school add a harness so that Zayne does not walk around the bus while it is in route (this would be something he would most likely do if not strapped in). We weren't sure how he would respond but he has done well. Jake is the one who helps him on the bus and he says that Zayne is all business when it comes to riding the bus.

Zayne was denied services for Physical Therapy at school. They believe his gross motor skills were not limited enough to need the support. At first Jake and I were surprise since he was in Physical Therapy outside of school but the criteria for the two are different. Also, around this time we stopped the outside Physical Therapy at the suggestion of his Physical Therapist (Ms. Kelly). We will do a check in and possibly restart these services after 8 weeks with a possible rotation of 8 weeks on and 8 weeks off.

Receiving the ETR report has also helped us to receive a caseworker at the Richland County Board of Developmental Disabilities. Zayne was evaluated and found to be eligible for services until the age of 6. Once he turns 6 they will reevaluate him to determine if he is still eligible. We are still in the process of being matched up with a specific caseworker. Once we have one assigned, they will be able to help us with support at school meetings, special services/connections and area programs such as summer activities for kids like Zayne. I'm honestly not sure how much support we will need but I am happy to have someone to turn to when I don't have an answer or need support. Each day in the journey becomes something new and I welcome the support.

Where we have made the most progress is in Occupational Therapy. These sessions have been very eye opening in understanding Zayne's sensory issues. We've learned that transitioning to this activity often overwhelms him. He doesn't respond in the way you'd think he would. He doesn't act scared, anxious or nervous. Rather, his echolalia (noises, phrases and sounds that he repeats) and behavior becomes worse. He sits in a state of over processing unless we are able to find a way of calming him down. I would describe over processing as like a record that keeps skipping...that's the way he responds and how his brain is responding in the moment.

One thing we try to do each session is start him out by swinging. This has a calming effect on him. We've also learned that he likes to choose the activity he will perform. We've assisted this by placing sticky notes on the wall with an image and asking him what he would like to do. He chooses the activity and then will typically participate for a short period of time. This has been a huge improvement from before where he would hardly participate at all.

Our OT, Ms. Ashley, also helped to get us a referral to the Autism Behavioral Health Intervention Program. Zayne gets very upset quite often. He will yell at you when he is trying to communicate something and you aren't giving him what he needs. He will also break objects, tear up things, feed things to the dog, and even pee in his room. Those are just some examples of the things he does. We've really struggled with how to appropriately correct the behavior.

We have our intake session for Applied Behavioral Therapy this Wednesday. It's a two hour session performed online. We're extremely hopeful that they will be able to give us some tips that work because nothing we have tried really seems to help. Some days are good but most days he is really hard to manage. We've know we can't do certain activities because of him and have even decreased the times we take him out to eat with us because he screams, yells, walks around the table and etc.

We've also had some issues with safety. One afternoon, I took both Zayne and Dagny into a store and while I was putting Dagny into the cart, Zayne ran out of the store into the parking lot. He does this, he will run if you don't have a tight hold on him. He has no awareness to the dangers of running out in a parking lot or even other potentially dangers. Since this incident I've only taken one kid at a time knowing that I just can't handle both of them.

We have to be careful of what we introduce to Zayne for fear that he will explore more on the property or that it will become another habit. One example is where I let him sit in the driver's seat with me one time as I was driving up the driveway. Now, every time I pull in the driveway he will bolt out the door and run up to my car. It doesn't matter if the car is coming at him, if there is snow on the ground, or even if he is in his underwear. His compulsion to do that activity is far more than he can control. Worse, he does it when it's dark and I always have to be aware, watching for this little tiny body darting out in front of my car.

Trying to think ahead and help some of these situations, we've purchased a couple of safety items. The first is a harness that he can wear out in public. This is something that fits snuggly across his chest and we will have "leash" that will help us to keep ahold of him better. I really struggled with feeling good about this purchase. It felt like I was limiting his independence or walking him around like a dog but the pros of it and the safety aspects far outweigh any of that. Our OT suggested that we seek out a prescription. She suggested that because she had heard of instances where people have been reported to the authorities for having children wear such devices. We followed her advice but it's a shame that we would have to do that honestly. It's just another situation where people need to be kind and more aware and less assuming of what they think they know.

One other item we purchased was an Alert Me Band. This is a band Zayne will wear which has our phone numbers. This will help with Zayne's wandering if he ever wanders away from the house (we anticipate this will likely become a thing in the future).

The final update I have is around Speech Therapy. We finally started this therapy about a month ago. We had an intake and a goal setting session. There was little availability to perform this in person (they were all remote) until about two weeks ago. We had our first 30 minute session and it went very poorly. Zayne did not respond well to the new therapist. He spent the entire time over processing (where he repeats various echolalia consistently). We never got him calmed down unfortunately. We have our next session tomorrow so I am hopeful it will go much better.

We still have a long road ahead of us, especially as these days feel shorter right now. There are beautiful moments and there are genuinely difficult ones. Some days it is overwhelming but our love for our little guy will keep us strong and help us to fight for him. I am certain that each day will bring new challenges but as our awareness grows so will our ability to understand and support our special little guy. Thank you for continuing to follow and support us in our journey.