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.

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.

Still Learning Our ABAs

Autism-related behaviours manifest differently with each person. Our experience with James is special in that he likes and seeks out others, he is normally sunny, and is empathetic toward others. Sometimes I realize how focused I am on James, and how much I am not paying attention to the bigger picture if Autism, it's issues and research.

For example, this morning I was reading an article regarding treatments for those affected by Autism Spectrum Disorder (ASD), which is James' official diagnosis. There were many references to ABA.

Huh?

Okay, I'm officially clueless. I had to Google it. ABA stands for Applied Behaviour Analysis and there are pages and pages out there on the internet that cover what this means, what's hot, and evidence-based reports. The Bright Tots website is what I was reading this morning.

Once I got going, I realized I did know what this was, I just wasn't used to thinking about it as "ABA". In preschool, his teacher and SHAPE assistants worked with us to help James learn to eat and dress by himself, as well as cleaning up after himself. It was key in getting him engaged with successful potty training (although it took several attempts to find the correct motivating behaviour). Instead of ABAs, we talked about self-care goals, targeted social interactions, delved into breaking tasks down into small steps & social stories, and strategized ways to model correct speech & language.

Now in kindergarten, his team and family continue to look at ways to keep James engaged in his class routine, improve his social & language interactions, and encourage age-appropriate behaviours. So I feel better that I haven't totally missed out on ABA for James.

What I still feel I need to learn about ABA, though, is how else it might be able to help James. Where we can find these services. How we can pay for them. Because last time I looked, they were not covered by health insurance in California. Because I agree 220% with Autism Speaks in the part of their 2009 document "Arguments in Support of Private Insurance Coverage of Autism-Related Services", which states:

Argument 7: By improving outcomes for children with autism, mandated private insurance coverage will decrease the lifetime costs of treating and providing services and will actually result in an overall cost savings in the long-run.

Incidentally, I think the government should be seriously looking at this as well and see programs that support ABA-related services as a key investment in our future. We need to keep state and federally funded programs intact as much as possible, because for families like us they are just about our only options.

James currently receives the bulk of his services from public schools and the North Bay Regional Center. Without this assistance, we'd be hurting. And 10-20 years down the road, James might be even MORE dependent on government-related services, had we not had the help to get him to manage his own self care and jump-started his learning and speech. Along with the other 1 in 100 children on the spectrum.

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 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!

ABA, O/T, Meds, and Drink Mixing - How's Your Summer?

James has been triggered by what most people consider every day sounds: dogs barking, vacuums, leaf blowers, hair dryers, edgers, trimmers, young childrens' voices and crying. His behaviours and scripting kept him out of program even before COVID-19 hit this year. Goal: Work on lessening the impact for better social integration.

Practical: We now have our own home instead of being in the apartments at a busy cross street. James has headphones that he can use. I and his support crew are providing more "expected" scriptings he can use to communicate his discomfort and displeasure. We have started meds for anxiety. 

OMG, yes - we have started meds for anxiety! (there is dancing going on, offstage.) ABA, O/T, and his psychiatrist have all ganged up on him with the most positive of support. It's made a huge difference, along with the new meds having a milder taste and smoother emotional ride, so to speak.

Services: 

• ABA has started in person park sessions. They are tough. James brings out his button-pushing, inner toddler worst personae and pairs it with shooting the birds randomly. So, glad not a lot of people loitering about. Kicker? James will wear his mask, more often than not, but then shred his headphones or snack. Gah.

• O/T has started working with James over the video interface. We are working on eating, self-care (hygiene tasks), and relaxation techniques. Big excitement last week: James made a smoothie in a blender. He tasted his creation (the tiniest of tastes, but he did it). And then I got to finish it - it was very good! James tolerated the sound - probably because he got to push buttons and watch the blending speeds change. 

I got so happy, I made blended gin fizzes the following weekend. 

Here's to summer!

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.

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!

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.

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

Community Rules - Practical Applications

 In the same ABA session that explained and defined House Rules, James' Team also covered Community Rules, or CRs. The CRs are to address safety issues, such as not walking into the street, keeping his seat belt buckled when riding in a car, and using Friendly Language.

Yesterday James and I used these CRs on the drive to get hair cuts, the hair cut appointments, and the drive back down home. They were in use again when we drove to our in-person ABA Social Group and home again. It wasn't a complete reversal of the negative behaviours and scripting that we've been struggling with recently, but it did make things much smoother and calmer.

As James heads to adulthood, it's more important than ever that I do what I can to help set him up for success, which I see as living as independent a life as possible, enjoying the activities he likes with a productive routine and a good support group.

I am so grateful there is a young adult peer group that he can join. In general I feel this is crucial for teens, people on the spectrum even more, and James in particular, as he is a social and curious guy. In the past, I have seen great benefits to James from social modeling that comes from in inclusion. I think being able to participate in regular summer day camps, swim lessons, and classrooms really helped him understand and and develop not only language, but turn taking, chore performance, and the ability to play with others. I feel all this has enriched his life.

Even though he is almost an adult, he is still testing the limits, and these rules are a good transition between unspoken rules in younger/smaller settings to more adult classrooms and work environments, where rules have to be spelled out and adults are expected to follow them. 

Autism Speaks has a nice page that discusses Social Skills and Autism in easy-to-understand detail and also provides resources. 

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.

Out Like a Lion

This month started off just trying to push through until Spring Break. Then there was Spring Break! Then we got sick ...

Now in the last days of March, we have started ABA intake and at the most recent Triennial IEP meeting (which has been ongoing since September) I signed a release form for the school district to discuss placement outside of the public school district. Both of these developments make me want to roar - because it has taken a lot of work to make them happen.

ABA can help get James support to learn self care, from brushing his teeth to taking baths on his own initiative. It can include social events and opportunities. It means James and I get a break from each other. It means James gets help learning life skills to become independent.

Better placement for school goes a long way to my peace of mind for James' future, after disappointments and broken promises over the past 2 years.

Yes, I want to roar. Finally, help for James! Who is grrrrreat!

Independent Living Skills: The Schedule

 Fall is a good regrouping time for many special needs families - the start of another school year, support services are done with summer and vacation schedules. Goals are one everyone's mind.

With ABA legacy, current school Transitional IEP, and new Behavioral Respite teams on board, it's time to surround James with opportunities and support for honing and growing his independent living skills.

Yesterday, the focus was on washing his own dishes. We have a bottle brush and gloves that help him with that. Today it's removing trash from his room and bathroom. I am still doing the heavy lifting for both activities, but we are building James'' skills. The practice, with reinforcement at school and during respite, will help.

ABA had lovely schedules at first. What ends up working best now? a brief list of Chores and Rewards (incentives). 

I am inspired to get us on a whole house chore chart for daily and weekly chores, especially with 2 more cats and storage boxes in the house. Pinterest and Google are most obliging with ingenious designs.  

Chores were verbally assigned and understood in my home, growing up. Both James and I can benefit from a visual organization. 

The Parental Mirror

Years ago, when talking with my daughter's therapist, as I tried to be there for both my kids while supporting the family with a F/T job as my family and home broke painfully apart and crashed, I was given the best piece of advice.

"Your daughter needs to see you happy," she said. "She needs to see you making time with your friends and modeling positive social and coping strategies."

At the time I felt despair, like falling down a well. I was overwhelmed, unequipped, and isolated. I felt like the worst parent ever.

Then I tried even harder to catch myself first before hyper focusing on "finding a fix" for my kids.

I have gotten better with practice. I have realized this not only applies to my daughter, it also applies to James, who has a highly developed empathy with those around him. On the plus side, he models "good" behaviours if they are around him and he can, to an extent, read a room. On the stinker side, it gives him a fiendish ability to push peoples' buttons.

But I digress. Fewer years ago, I was talking frankly with my son's ABA supervisor, about the overall regressions and socially unacceptable behaviours that roared out in the face of a horrible 8th grade experience, second evacuation due to wildfires, and COVID-19 lock down. I was so desperate for help that despite trying to bubble myself so I could remain on call for my family members with already compromised immune systems and not lose any time at a severely unsympathetic job - I called ABA and told them I wanted to continue in-home services. Thankfully, it was the right call.

"Your son is begging you for attention," he said to me. "You do not realize how stressed you are and how that is affecting him. I know you have a huge load of responsibility, but your son NEEDS you." This set me on the track of thinking again about the Parental Mirror, as I like to think of it, and how important that was for my kids and myself. 

With this supervisor's urging, I was able to investigate IHSS and becoming my son's caregiver. A family friend, who also is an IHSS caregiver for her disabled son, urged me on further. I discovered that an IHSS staff person had misled me in thinking I could not be my son's paid caregiver (at 15 hours a week) if I also worked full-time. To make a long story short, I transitioned from working 40 hours a week at an increasingly stressful job and not being paid for caring for my son to being paid to care for my son (currently at 63 hours a week) and (all things considered) earning more take-home pay. 

I am SO much happier, and it shows in my son's reports from school and his overall demeanor. It has taken me a full year to stop feeling burned out and that I can do more besides caregiving for my son and start living my life again.

Everyone will tell you that, as a Special Needs Parent, you are crucial to your child's development and well-being.  Next time you're feeling stressed and downhearted, take a look at yourself in the Parental Mirror, and give yourself a boost, love, and encouragement - just as you would to your kids. It works, and you're worth it.

Get Back Up Again

Thursday morning, James was a shaky wreck. We missed the bus. He could not focus to eat breakfast. James usually pops on his clothes, including shoes and socks in about 5-10 minutes. After an hour of waiting while he was "getting ready", I went and got him (which made things more fraught). He was close to a full-on panic attack when I pulled into the school parking lot. I remained calm and walked him to the office, where I explained in a low, calm voice what was happening.

"Thanks for letting us know," I was told. "We've got this." The woman was speaking as calmly as I was. Her eyes serious. She got it. I love this school.

No calls or texts, the whole day through, even though I had my cell phone out on my desktop, expecting them at any minute (because this happened repeatedly over this past school year). James took the bus home, and arrived in good spirits. He took being swooped up, as soon as I got home, to ABA at a nearby park in stride. Although there was no actual ABA services (there was a time misunderstanding) we hung out at the park for a bit, and said hello to some of his favourite counselors at the Boys and Girls Club.

We picked up pizza and went to go look for deer at Deer Hill North. We hit the deer motherlode: eight deer in assorted locations, ranging from the sweetest little spotted faun to full grown males with great, velvety antlers.

Home again we went. James settled down and ate some pizza and drank milk. Then parked himself alongside a gallon of vanilla ice cream. Normally I don't condone this, but this guy needs to put calories on his bones.

I read the daily notes from his teacher. James took more breaks for quiet time than usual and only had one point in the day where behaviours broke out. Otherwise, he participated. Such a difference: I was getting reports about his day on relevant topics. James went to school extremely agitated and returned calm. No undertone complaints about the staff or school (although there was some of the usual litany about past people that are associated with bad memories).

As I sat in the armchair in the living room, he began to chat pleasantly. Eventually, he asked about the Dad in Matilda. I picked up the book we'd checked out of the library last weekend and said "Hey, let's see what the author says about him."

After noisily resisting any reading whatsoever for over a year (broke my heart - I love reading), James listened to me while I read to him. I was hugging myself on the inside.

Two chapters later, my eyes were wanting to snap shut. I apologised and said I had to turn in, but we could read more tomorrow. "Okay, Mother," he agreed, and strolled off down the hall to bed.

I went to bed grateful and thankful. We were back up again.

Sick Day

Our Spring weather has been flip-flopping between 30s in the mornings, rain, and sunny highs of 84º. Last night I awoke to hear James coughing and sniffling. This morning it's more pronounced. While he did not have a fever (amazing how, with a little practice) a quick hand to the forehead can accurately gauge this, I called him in sick to school and ABA.

One last task for this afternoon/evening - a COVID-19 test. It's always a good idea to be safe. Also, if he does test positive, I need to notify his school and ABA. I really hope it's a negative test - otherwise, there goes my week. Fingers crossed that all our vaccines and boosters are doing their jobs.

ETA: Results are negative!

Declarations and Life Goals

We are finally getting rolling with ABA intake, and hope to have services starting next month.

The last question was addressed to James: "What do you hope to get out of these sessions?"

His answer blew us all away: "I want to feel self-confident."

First: I love how James was engaged and made a crucial partner in this process.

Second: The honesty of his answer. This guy has a huge piece of my heart. I am cheering for him all the way, because this has to feel huge - especially at the start of his teen years.

Third: I'm not crying, you are!

Advocate Stratego

My email resulted in a call this afternoon. The school to home communication is messed up. James is back to having an aide that does not know how to deal with him. There may be another aid in a couple of weeks.

When did the parent become the quarterback, calling the plays that need to go through at school?

Then two more calls in response to different email. The ABA services provider got more frustrated than me, trying to set up 3 more intake session before we could even think of matching my son to an actual person. They are based an hour away from us and returned the referral. They did try, but on a bad day, one of us would have had to travel 45 miles in a trip that can take up to 2 hours one way.

Back to square one, where we were in October. We may get to start up again in a month.

To paraphrase this excellent article "Why is every step a fight?"

Autism Speaks March, 2011