Still Standing

We've had quite a spell of winter bugs: colds, flu, and more. 

Winter has been very winter this year, with lots of atmospheric rain and periodic plunges into the 20s. We were visited by snow in our hills and we may not yet be done with this frosty and wet weather.

We participated in two ABA sessions at our local bowling alley and while the second session was much more enjoyable for James, it is also where we picked up norovirus. Gah!

Through it all, James has been really patient. He is doing great with making snacks with supervision - quesadillas and PB&Js. He has started to participate more for PE. 

Still here, and moving forward.

Breaking Down Eating

 It is common for autistic people to have a small and inflexible group of foods that they will eat. For both my kids, all their senses were acute. I was also a stressed working mom and so missed a crucial window of getting my kids to eat a variety of foods. 

All this to say that both my kids love carbs and plain foods. For a while I had success with getting them to eat apples and bananas. No more. Tomato sauce on pizza is the closest they get to a vegetable (no, no fries any more either). There was a week where I could get them to eat raw bits of broccoli, because they thought it was funny. No more. No popcorn, but they will eat tortilla chips.

For a while, James had a pretty good diet. Then our world broke up, broke apart, caught on fire, and kept falling apart on us. There were unresolved dental issues. James decided eating was a pain and his dietary world narrowed to cheese pizza, milk, and croissants.

Gradually, I, some family members, school, and ABA have encouraged James to re-expand his diet. I felt like Queen of the World when I got him to eat a warm pretzel in Golden Gate Park during COVID-19 lockdowns. Then ABA got him to make (and even eat) a quesadilla and a PB&J. His aunt got him to try strawberries and melon. His teeth are in much better shape and I think that is encouraging him as well.

Now ABA is providing a nutritionist to work with us on new foods and approaches for James. Like so much else that I have experienced with James, this involves breaking things down (introductions, preferences, actual tastes, bites, chewing, etc.) over several months to support a more robust and healthy diet. Bon appétit, mon fils, bon appétit.

ABA-less. Again.

 I had a feeling this was coming. After some missed sessions and communication snafus, James' ABA BI person of almost a year is leaving us. It makes sense, they are a recent graduate and it's rare to remain in one place at that time of life. 

However, James is supposed to have 5 days a week of ABA. Now, he will have none. 

This is not the first time we've had this happen. Like teachers, ABA workers are usually not paid enough for what they have to do. Our kids take a lot of attention and patience. While I think the experience of working with special needs clients has rewards beyond money, it does take a lot out of a person.

In the past, losing all ABA services would have hit me hard. Now that we've weathered this loss several ties, I can take it more in stride. I can even see it as an opportunity of more time for James to try new things. Because now that we are settled in our new home and James in his school, we can do that.

James still really needs his ABA services, however.

House Rules, With ABA

 

Right now, ABA peeps are working with James for House Rules and Community Rules. James and I have been having some extremely rocky days recently and I realized I needed more help and called in his ABA Team. 

It sounds really funny, but we have never needed to officially spell out House Rules before.

I let James know that I asked for help with this, and that he'd be working on House Rules with ABA and me. I did this because James is worried about what people will think about him, and about what they might say about him. His automatic responses are usually "I did't do anything wrong" and "I didn't mean to" and (starting a couple years back) cussing like a sailor (thanks public schools, rant videos,  and lack of social opportunities). By letting him know this was coming, in a calm manner, I hoped for better engagement.

These Rules are the continuation of the "expected vs. unexpected behaviours" that we've been reviewing at school, home, and ABA. It pairs well with the recent work to use Friendly Words at school and in public (to curb swearing and inappropriate scripting). 

Discussing and defining these Rules, if/then scenarios, and rewards for following the Rules also touches on the Zones of Regulation. These Rules also affirm my recent work with James about setting and respecting privacy and boundaries.

In the course of writing this Blog post I came across this great page of resources from Autism Speaks: "Out in the Community". 

Feeling hopeful, and so glad I have some backup for this.

ABA at Full Capacity

 For the first time in many months, almost a year, James is back at full programming for applied behavioral analysis, or ABA, therapy. It has been so long in fact that I am finding myself having to adjust my schedule to accommodate it. 

For one thing, I will have to up my housekeeping game. The ABA therapists need to have space to work with James. They also will be working with him to make sure he is done his chores in his room and  bathroom, so I need to work more with James to make sure that this goes as smoothly as possible. 

It does have its good side. Right now I am on the back porch looking at the garden and the trees above the creek. 

Even better, I know that James is in good hands and he is interacting with people, which is really what he is enjoying these days - making connections outside his family and getting the chances for new kinds of conversations and playing card games like Uno, Guess in 10, and Would You Rather.

Social Pastimes 101

 Engaging with James outside of school, chores, or self care has always been a bit of a challenge. When he was very small, we were able to do Music Together, reading together, swim time at the pool, or explore parks and beaches. He loved playing with his sister, although she was the leader, he had a blast following along with her.

As he's gotten older and I've been back at work full time while single parenting, it's gotten harder and harder to just spend time with him. We both love our screens too much and the last few years have left us both stressed out and exhausted. He is also 17 and ready to meet other kids, although his behaviours and eloping are a challenge for this.

Sometimes we can engage in cooking or brief letter writing. Often we bond over car rides or music we like to listen to. Whenever I make photo books for our year, I make a copy for James, as he enjoys looking through them.

The ABA folks are having much better luck connecting socially and recreationally with James in their afternoon sessions. I have reassessed my stock of social activities in our new place and have bolstered reading and our board games with cards and more social games:

• Uno emoji
• Smack It
• Guess in 10
• Conversational "Uno" cards from the ABA office
• Mario Kart Uno (not shown)
• Matilda, by Roald Dahl

ABA - Why It's Needed

I am taking a break from paperwork and spring cleaning in my bedroom den, sitting in my armchair and listening to James and his behaviour interventionist (BI) make a schedule for their time this afternoon and following through. It's a deceptively easy blend of hygiene tasks, games, and breaks. 

I love it best when I hear them playing a game, because James wants to be socializing with others and this is a great, gentle way to give him practice for that. 

Over the past couple of years, James has stopped wanting to sing, play card or board games, or read together with me. It's hard to get him to watch TV with me. Most of our bonding time is in cars or taking public transportation (trains and metro transit for fun). I get it. He needs his own friends, his own people.

What is ABA?

Applied Behavioual Analysis (ABA) helps us both by reinforcing the importance of hygiene, game playing, and socializing. Communicating and planning (intention) are worked on as well. 

Why I think ABA Works for Us

Behaviours
I see ABA as important because for someone like James, who has communication challenges, is smart, and prefers to avoid activities not of his choosing ... behaviours have become his communication when words fail. Eloping, swearing, or inappropriate scripting ... ripping paper, destroying his DVDs and old CD ROMs, throwing things out his window. 

When James is stressed, he exhibits more behaviours. After COVID-19 quarantine started, we had spitting on the floor, paper in the mouth, wall hitting, head banging, and yelling - capped off with intense 2-hour meltdowns in which I was on high alert to keep James in the house, safe, and offered calm encouragement to breathe. He shut down on hygiene and participating in remote learning. He grew inches and entered puberty with a vengeance. He regressed on top of his previous regression. He started to exhibit extreme OCD and was almost impossible to transition anywhere in the house, let alone to the car or to an appointment at an office.

In-Home Support
Having ABA in the home (as soon as it became available) was a real life saver. The BI could be with James for remote learning, support hygiene, offer a safe and social connection. What a relief to have a team to break up the monotony of Just Mom. It also allowed me to keep working from home. I bought an air purifier and lots of antibacterial wipes. The ABA team all wore face masks.

Understanding Why and Setting Goals for the Client
The behaviours were analyzed by the ABA team to determine why they happened. A plan was crafted to redirect and support healthier self care, rebuild communication, and provide tools to help move us both forward when we got stuck.  Goals were set so progress could be reported and any new behaviours could be addressed as soon as they were noticed. 

The goals were aligned with what I advocated - James is a social guy who is curious about and likes people. He gets a lot of positive experiences by being able to interact with people and is almost giddy when he can communicate and create connections with others. He likes periodic contact on FaceBook and is happy to text and call people on the phone. All of his current ABA goals support that (as well as many of his IEP goals at school). He will need all these skills and tools after I am no longer here.

I know there are those in the autism community who feel the focus should not be on fitting into the neurotypical world, and I say good for them. Autism is a really unique condition. I would hope that any ABA program will align with the goals of the client, or those who understand and advocate for them as needed. I hope that there will be greater understanding by the general public and organizations for those who are differently abled. There really is a lot to discover.

Tall Teen Becomes Short Order Chef

This past Friday's ABA session included work on independence skills. It tied in nicely with both our current obsession with the Great British Baking Show and a nigh universal love of .... bacon!

James was extremely skeptical, but his awesome ABA Team swung him into -- cooking bacon. And not just any bacon, oh no. They brought a delectable offering from Oliver's.

At first, James retreated down the hall. Bacon smells when it cooks, and I don't make it that often. Then too, he knew that he would also be expected to touch and taste it this time. Trying new foods is not what James wants at all. But, he is growing still and needs to be comfortable with eating a wider variety of foods.

I watched, as discretely as a mom can watch her child in action to achieve. James did a great job of stepping up to the pan and using tongs to turn the bacon while the fat sizzled, snapped and popped. He even rearranged the bacon slices to lie flat and straight in the pan.

At the end of the session, he presented me with this tasty delight:

As they say on that show, attention to detail is what makes you an excellent chef.

Way to go, James - and thanks to his ABA team!

ABA again today. They are talking about creating a video on YouTube. It's going to be a music countdown of his favourite songs.

James is giving him all American folk music songs: Polly Wolly Doodle, Shoo Fly Don't Bother Me, and Clementine. I love the fact that he is naming these songs.

I know they are not age-appropriate. Most 14 year olds want to seem as cool and mature as possible.

James is still grooving to his favourite songs, however. He is humming them as he makes himself some frozen waffle snacks. I love hearing him do this.

ABA While on Vacay

We took a brief break from Applied Behavioural Analysis (ABA) the last few days of school. I spent about as much time calming down James afterward as he spent doing ABA. It was not worth the crying and further reduction in eating. Plus, I was getting no sleep and James was not happy next day at school.

Now, however, it is summer, and James can start back up again. We are back at our local Starbucks, because it has WiFi (which allows for the iPad to be used for his checklist and reward games of Angry Birds) and gets him out of the house (so he is not in his room all day or feels like he's being cornered in his own home).

There are some nice conversations going on right now, while James periodically gets up and wanders about. I am really hoping James settles down, over the course of a the next few weeks, and starts working on some of the self care and organizational goals.

In case you are wondering, here is a nice article that talks about ABA services and how they can be helpful to an individual who is autistic and their caregivers (usually family members).

I like being able to go in to work earlier and then having a break before ABA starts. I am getting some summer vacation too.

A Good Day

It's Friday, and I am in Starbucks having computer time, while ABA is going well in a corner, over the ever fascinating iPad. They are taking turns between talking about school, the weekend, TV shows, and playing Angry Birds. Talking about Angry Birds.

Yes, folks, The Angry Birds 2 Movie is coming out this summer, and we are going to see it:
 

James is doing a really good job, not letting the music put him off. It's kind of funk, but I can imagine him worrying it's some kind of rap music, which he does not like, because it's what he hears outside, with really bad language (a trigger) involved.

I got up early this morning and baked scones from scratch, then cleaned the kitchen before calling James. He came out in a good mood and ate four scones and some milk. We kind of joked around until it was time for school. He got ready and caught the bus. Again, he was in a good mood when he got home.

After I got home from work, I reminded him we had ABA and that we needed to go to a Starbucks. He went with a bounce in his step. He recognized the ABA associate (whom he'd met briefly, while really upset) and greeted her. Inside he picked out a table and they got down to it.

I'm thinking how going out for ABA has really helped change the dynamics. It's also helped that the ABA people are committed to working with me to make this work for James. They listened to me when I said there was too much emphasis on talking and answering questions. They listened to my instinct that going to more neutral ground might help.

I just got the day's report from James' teacher. The title reads "Great Day For James!"

Yes, yes it is!

Point Break

We are taking a break from ABA today. Last night, both James and I were in tears part way through the session. We eventually calmed down and had a good evening, morning and day. It's so frustrating that services that are needed, with such nice people are too much right now.

Some takeaways:

• James is overwhelmed with verbal interactions. It's pretty quiet at home and he's always had an aide to interpret for him at school and me at home.
• Because he's stressed (hypervigilant was a recurring term last night), James is not eating, which makes everything worse.
• I think James also feels like his safe space is being invaded. The ABA folks and I have a Plan for that.
• James really likes going for car rides. I think it's a great way to literally reset one's head.