We’ve been really lucky with Tristan and really haven’t experienced tantrums like this before. If he did tantrum it was only because we where leaving a fun place to come home and even then he was easily redirected and the tantrum was short lived. Not now. Now we have full out kicking, screaming, rolling on the floor, nuclear meltdowns. Its usually over sharing trains with Maya, occasionally during therapy and sometimes we just can’t figure out what has set him off. After all the progress Tristan has made it has been really difficult to see this. I feel like he’s either having some sort of regression or his awareness is increasing and he’s acting more like a typical three year old. Like I said from one extreme to the other.

Added to this Odum has been working seven days a week writing his thesis. He has to be done ASAP so he can find a job since we have to move out of the graduate student housing we live in, in April. So because he’s been working seven days a week I don’t get much of a break. We don’t have any family close by to help out and I feel very isolated most of the time. Both of us are so burnt out. It goes without saying its also really stressful not to know where we’re going to be living next month.

We also got a hard dose of reality when we recently watched Autism:The Musical. This is an amazing documentary that really gives you an insight into the issues families with autism have to confront. Most of the kids in the movie where older, around ten and older, and it gave us a bit of insight into what Tristan’s future may be like and issues we may have to deal with. At one point in the movie one of the mothers made a great point about our kids’ futures. She said not only is it about getting our kids the therapy, but its also about how they will be valued by society. Even after years of therapy many children and adults with autism have differences that may not be accepted, nurtured or celebrated. This woman’s daughter had autism and was being taught life skills like how to wash dishes. The mother questioned what kind of future that is for her daughter to being relegated to washing dishes and sweeping floors. Was that really the only thing she could contribute to society? She even went so far as to say she wished her daughter would die before her because her daughter will most likely never be independent. That’s the kind of fear and desperation parents have. Our hope is for Tristan to be independent, to find a passion and do what he loves, to have meaningful relationships and be a valued member of society. We haven’t allowed ourselves to think about any other possible future for him, and the thought that we may have to led me to have a mini emotional breakdown.

Right now our focus has been getting Tristan the treatment he needs while he’s young and not so much on his future. And so here we have another issue we’ve been debating the past few weeks: Tristan’s therapy. I came across a really great discussion on a therapy called Relationship Development Intervention (RDI) and we’ve been thinking a lot about it and IBI. There are a few things about IBI that I’m not completely happy about that were brought up in this discussion and ways in which RDI is helpful. I still have lots of reading to do but from what I gather RDI focuses on building a reciprocal relationship with your child, which is a challenge for some kids on the spectrum. It focuses more on the development of a relationship, which eventually allows the child to improve their communication and social skills and uses the reciprocity of the relationship as the reinforcer. IBI focuses on drilling to teach skills and uses tangible positive reinforcement for successes. Don’t get me wrong Tristan’s progress while in IBI has been nothing short of remarkable, but at times it feels to me like its similar to how you may train an animal. I think the hard thing is to know what to do. No one can give you a definitive or even close to definitive answer on exactly what to do for autism and if it will help. Which leaves you as the parent second guessing yourself and looking for answers anywhere and everywhere.

This post is all over the place. Just like a rollercoaster I guess. I know there’s a light at the end of the tunnel for us. Its just a pinprick but Odum is so close to being done this master’s and I know he’ll find a job. With all his experience and education he better! And Tristan has made leaps and bounds of progress and we have no reason to think that will stop. Just lots of things for us to think about. Its important to take things just one day to the next but its also important to take a step back and look at the big picture. As you can see we are going through a lot right now, there are a lot of changes in store for us and many important decisions to be made. What we have decided for sure is to continue to work at healing Tristan’s physical problems with our naturopath. And most importantly to endeavor to enjoy each moment with both kids and let them be kids.

So this system is supposed to help kids that are nonverbal to communicate and eventually lead to verbal communication. The theory behind this system is that the child is getting an immediate and tangible reward for communicating. Eventually the child will get how two way communication should work and the benefits of two way communication. One study of 18 preschool children with language delays showed that these children used PECS to communicate outside of therapy sessions and half of these children stopped using PECS and started using speech within a year.

Tristan’s therapy sessions are just half an hour once a week so we really have to do a lot of work at home. We’re going to start doing some picture exchange for simple stuff to start with for stuff that Tristan loves, like bubbles and bananas. And then we’ll eventually move to more and more pictures and then a picture schedule. A picture schedule is just a pictoral schedule of his day, and is really supposed to help with transitions from one activity to another. Speaking of transitions, normally Tristan does have a really hard time leaving one place and going to another. This kid rocked the transitions today. He went from playing in the lobby at Kidsabililty to the SLPs office without a sound even though he was in the middle of playing with puzzles. Believe me this is normally meltdown worthy. And then he went from playing in the office to outside to go home very quietly too, although I made sure to bring my secret weapon, a fruit to go snack.

And just as an aside as I’m telling Odum about the whole bubble thing miss Maya decides to say bubbles numerous times with that big beautiful smile on her face, what a character!