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!

Restless

It has been a month of early morning trips to SF before school and work with James. We enjoy time together and the break from routine. But James is now getting bored with the long wait in a coffee shop.

He hasn't wanted his iPad this morning, choosing instead to work math problems and write letters in my notebook. part of me is thrilled. Part of me is thinking maybe it is time to start working some walks into this routine, if it continues into another two-week session.

The sessions are definitely helping. While the weight gain is not really happening, he is getting cleaned out and holding steady at 61.5#. He is starting to eat whole sandwiches, tortilla chips, and blueberry waffles again. Thanks to his wonderful teacher and classmates, he is trying new foods with his Lunch Group.

Now that James is getting healthier and more energetic, his ability to just sit goes down. And that's okay with me. He's got things to do. Places to go. As he should be.

Foghorn Morning

We're back in the City again. Lots of fog everywhere, beginning with a dense ground fog coming off the fields around our house. Then came the river fogs off the Russian and Petaluma rivers. Finally, the ocean fog found us in Marin County.

Down at Baker Beach, dense mist swirled slowly over the water. Fishing boats signalled each other with their horns as they passed each other while the Golden Gate Bridge fog horns blared and boomed in the background. The sound of the waves crashing on the shore seemed unnaturally loud in the muffled air.

James was fascinated. He's never been in a thick fog near the Bay before like this. He said the foghorns sounded like they they were talking with each other, and we had fun trying to imitate their hooting conversations.

This week, James is writing and solving math problems for himself in my notebook (up to five pages so far). He elected to leave his iPad in the car. He likes seeing all the children here in Starbucks. I actually forgot to bring his shoes, but luckily I found a spare pair of mine in the car, so we're sharing.

This week we are going to try James going by himself to the therapy session. I will be sitting in the waiting room, finishing my coffee, and enjoying the foggy morning.

Back in The City Again

Feels like a routine already. For the first time, we got views of fog on the Bay. Some hovered over the bridge, the rest steamed through the Gate and across the water into the East Bay.

James and I are in the coffee shop again, waiting for his appointment. Sure beats waiting on the freeway!

The area was bright and sunny, but now I am looking out the window, across the street, and watching the fog roll over the top of the hill and down the street toward us.
It is good to be back.

On the Road for Answers

We're back in SF again, waiting for our much-anticipated appointment for the biofeedback clinic at CPMC.

Guess where we're hanging out?

It's something of an adventure and much more relaxed this time around. For one thing: James can eat and is not facing a medical procedure. For another, over the past week, James has had some success eating and producing BMs on his own.

Because we both hate traffic, and have committments in the afternoon (work for me, a local appointment with a dietician for James), we got up very early and were on the road shortly after 5:30am. We hit some traffic, but not too much, and used the heck out of the carpool lane -- yes!

We watched the moon set over the Pacific, just north of Land's End. There was a moon path over the waters. Gulls and sparrows fluttered and flew over the sea and sands. We saw a parked school bus in the lot again. Then we headed up to the Legion of Honour, and watched the sun rise. Gorgeous.

Now we're almost ready to head out. James already drank his milk and ate a croissant and cookies. He is so much more lively than our last trip a month back.

We still have a way to go. I can take days like these though. Hoping for good things!

New Year's Goals

Time to set some goals for the coming year 2015:

1. James needs to eat more to gain weight. Currently he is pushing 4' 11" and we're struggling to keep him above 60 pounds. He was 87 pounds last August. Not sure why he's decided food is evil. We have ruled out Celiac Disease and throat/stomach/upper bowel issues with an endoscopy. Which made James even more determined to Never Eat Again. Sigh.
       
2. Help James become more "regular." We're going to be trying biofeedback for that. In San Francisco at a Lucille Packard clinic once a week for the next 12 weeks. I'd say "shoot me now" but the truth is ... we are desperate for help with this.
        
3. Get James' speech back on track at school. It's pretty much not been happening over the past 2 months. Not happy about that at all. He needs help speaking. It's in his IEP.
   
4. Get Behaviourist help going. We're finally approved and not having to worry about hundreds of dollars in copays. We've started the intake merry-go-round. We need to finish it AND start the sessions!
   

                          Goals on a more normal level ...

       
5. Have James' birthday party BEFORE Easter this year. Bowling alley sounds good!
        
6. Send Thank You cards for Christmas this year (meaning for Christmas 2014 by the end of January). I know we all can do it. We should do it. We will do it!
         
7. Try to add Saturday Sidekicks back into our routine. That is one awesome program!
        
8. Breathe. Believe. Do.

Special Exposure / Wordless Weds: Being Happy

Don't worry, be happy now ...

That's the song I hear in my head, looking at these pics. It's good to remember when I start worrying too much.


For more images from the heart and to share some of yours,
visit Special Exposure Wednesday at 5 Minutes for Special Needs.






               and ... Wordless Wednesday

SNwRG: Ally

Last week I wanted to post, but was wiped out from our road trip and James' illnesses that hit soon after our return. I was tired, worn out, and low.

There must be something in the air, as I read Sunday's 6/12 post today. I can tell she must be going through a rough time, because for the first time in a long while, there's no new Ryan to grace our Fridays. So I am using last week's image for this week's post:

Put them to bed for me too and I will be forever grateful!

Thanks, I needed that!

Here's a secret: I tell this to my kids sometimes.

And for Sunday, I sure hope you are feeling better soon!

Visas, plane fare, and daily euro allotment included.

Thanks again to Sunday over at Adventures in Extreme Parenthood and Ryan, for making me smile when the going gets tough. Head on over to see more Ryan and share your take on parenting, special style.

Oasis

Where I am right now:

Listening to the quail, tuning out leaf blowers and other stress.

Cacophony

Even as it raises my blood pressure, it reassures me. At age of 3, even going into age 4, James was largely silent. He could laugh and cry, and made noises (think of a baby learning to stand and walk, making sounds instead of words). Then he started to talk. Now he will not stop.

Much of it is scripting, repeating lines from movies or TV shows. But he can produce these scripts at appropriate social times. I hope it's helping him express himself. James lacks a filter, as to when to stop verbalizing and how to modulate his voice. He has 3 volume settings ... normal, loud, and bellow. Any verbal attempts to get him to lower the volume inevitably evokes an even louder "I'm awake too!!!" Strangely, telling him we need to whisper or using my thumb and pointing finger to shrink an invisible decibel reader display have more success in getting him to lower his tone.

A very painful moment for me came from watching James with a sucker after his first speech therapy session. At age 2 and a half, he could barely hold it, his fingers both grasping the stick and poinking out at strange angles. He had no idea what to do with it. Both the therapist, myself, and his sister modeled how to lick the sucker. He put it in his mouth, and it fell out because he did not close his mouth. He then lost interest in it. I wanted to cry.

James likewise had struggles to blow air out his mouth. He loved bubbles and tried so hard to blow them without success. He had difficulties with grasping many things in his mouth, with the exceptions of a spoon (he'd snap plastic ones) or paper (including books). We did have a breakthrough with one of those cheap play "microphones" -- he finally got talking into it and breathing out. He talked all the way through Target with that toy, and you know I bought it for him.

So when I hear him laugh, fight with his sister, and yell "Mommy! Where are you? Come and see!" I grin. When I am listening to "Itsy Bitsy Spiiiiider" sung into the "mike" for the tenth time in two minutes, I am excited. When his sister roars "Noooooooooo!" and hides in her room because, almost three years later, he's finally mastered the harmonica, I feel lucky to experience this cacophony.


And this? Priceless!

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.

4 Counties, 3 Appts, 2 People, 1 Day

Yesterday I had to drive about 150 miles (round-trip) through 4 counties to get James to 3 appointments. Over a 7-hour period.

Were we crying and exhausted by 4pm? Well, only a little bit.

Was it worth it? Yes.

The best was the first (and farthest) appointment, at the tail end of gnarly commute. We spent over an hour with one physical therapist in a brand-spanking new building to formally evaluate James' muscle development through our HMO. The program and department are (I think) less than 2 years old, which is why I hadn't heard about it when I first asked that James be referred for a formal diagnosis almost 3.5 years back.

I really liked this woman. I felt she not only really listened to me but also that she was really observing James, asking good questions, looking at movements I hadn't seen him examined about before ... and she even gave me a great suggestion to take to kindergarten regarding playground safety for my boy. Awesome.

The other 2 appointments were the well-check so his health certificate could be signed and prepared for Kindergarten, and an immunization shot (MMR -- youch).

On a different note, James loved the huge blueberry muffin from Peets just before his first appointment, and his delighted, vanilla ice cream-covered face at Fentons made more than a few people smile back at him. And he was so happy that all he had to do this morning was wake up and go to summer camp (and play in the water).