Yummy… But I Can’t Have That Either

January 2012, I stood in my kitchen.  I opened my cabinets and refrigerator.  Anything that read gluten in the ingredients list or I thought had gluten in it had to go.  That was cold-turkey with not much planning on what was to follow.

As it turned out, that wasn’t just for Mia’s sake but for mine as well.  My own food allergy panel brought to light dietary limitation.  For example, some traditionally made Italian foods were snatched right off the table… like pasta and bread.

It’s getting close to four years since that decision and, recently, a definite lack of variety settled into my kitchen.  I searched the internet for gluten-free and dairy-free pasta dishes.  The only thing that seemed to come up was pesto.  Basil… yummy…. I can’t have that either. Nor can I have oregano.  I kept searching and found three different recipes that sounded good, but I could not have all of any of them. So, I turned the three into one dish.

For the pesto, I used two bunches of kale, grapeseed oil, three small lemons, frozen garlic with salt and pepper to taste.  That all went into the food processor.  I oven-roasted the chicken with pepper, salt, and garlic.  The pasta was a gluten-free, store-bought mix of quinoa, brown-rice, corn, and white rice.

This meal was for Craig and me.  Mia is not quite there yet.  The look of green “spaghetti sauce” doesn’t go over well with her.  But, as far as Craig was concerned, he liked it.  Good thing too.  Food variety has its limits in this household.  The meal will come around again.

Please be sure to check out Mia’s GoFundMe page,  http://www.gofundme.com/sc29p7xc.  This is no time to breathe a sigh of relief. That will result in Mia's regression, back into sickness and lengthy, high-volume, self-harming tantrums. We have to keep searching, find more pieces to help Mia reach for and aspire to her dreams.

Look Mom, No Stitches

It's Bowling. What Could Possibly Go Wrong? told about how Mia injured her finger.  In her treatment, doctors listened to our concerns and I made key information available to them.  There could be no needles and no stitches based on her documented allergies and conditions.  They were also limited with pain medications as well.  One may think that this would not have made for a good outcome for Mia's healing process.  But, as the picture shows, she is healing well.  Scarring may be barely noticeable.

It's Bowling. What Could Possibly Go Wrong?

It’s bowling.  That should be safe.    The bowling alley was ten to fifteen minutes away from our house.   What could possibly happen with bowling?  It’s bowling.

This was Mia’s very first time on a field trip without me.  She had bowled before though she really didn’t show much interest.  This trip was different.  It was therapy for Mia to develop more social skills with other kids.  One therapist accompanied each kid.  I thought that she would actually enjoy bowling this time. 

A friend drove Mia and me to the bowling alley.  We dropped Mia off with the therapist who waited for her.  That went smoothly.  My friend and I came back to the house to work with our Essential Oils businesses.  We were just getting started, laying out inventory when the phone rang.  The therapist told me that Mia fell and cut her finger and that I should come back to the alley.  I grabbed some Band-Aids, Coban self-adhesive wrap, my computer, and few other things Mia likes when she gets hurt.

My friend drove me back.  I heard Mia screaming bloody murder as soon as I walked into the building.  She sat on the therapist’s lap with her middle finger wrapped in big wad of paper towels.  The therapist told me what happened.  Mia picked up a six pound bowling ball.  They asked her to put it back.  She tried but fell while doing so.

Mia's After Initial Treatment

I took off the paper towel, one glance; I knew she needed to go to the hospital.  The ball had landed on of her finger.  The impact of the ball ruptured the flesh on the side of her finger, splitting the side of it into a deep gash.

A trip to the emergency room requires some necessary preparation from us.  I called Craig.  He got the ice pack made with rice from the freezer and compounded medications. He gathered her comfort items as well: her stuffed bear holding his wubby and her own blanket that served as her own wubby.  He met us at the ER.

As soon as we pulled into the hospital’s parking lot, Mia said,  “No”.  She didn’t want anything to do with it.  I got her calmed down.  We went through the normal check-in procedure.  They asked about her allergies.  Upon hearing about them, they changed her location from triage to a treatment room.  I pulled out my computer and emailed Mia’s documents to the charting staff, who added them to Mia’s record.  That made to process simpler.

A couple of residents and a nurse entered the treatment room, but hesitated when confronted with Mia’s many allergies.  They placed a call for the guidance of a more experienced physician and sent Mia to Imaging, which showed no broken or fractured bones.  Then, they addressed how to properly treat Mia without creating other conditions that were much worse than her split finger.  The treatment team considered having a cosmetic surgeon  treat her because it tended to have better options.  By the end of the discussion about her possible reaction to the stitches, Novocain, and metals, the physician decided to let the wound close on its own.  The question became how to best protect it from infection, pain, and more damage.  The staff wrapped her finger with gauze, bandaged it, put a splint on top of that, then wrapped it with more bandages.

At home, we took great care in changing her dressing and replacing the splint.  We are limited with what Mia can use to soothe her pain and itching but she finds relief with the Essential Oils.  She asked for them to be put on her skin or she will go and try to get them herself if went aren’t fast enough.  As you can see in the picture, despite all the limitation and allergies, her wound is healing well.

Mia's Finger Healing
No Stitches, No Novacain 

Dressed and Splinted 

That Moment

Part 2 of 2, Mia and Applied Behavioral Analysis

Mia, ABA, and School

With Kari Porter, MS, BCBA

By Alford Kerry Hardy

In Part 1, Kari Porter talks about Applied Behavioral Analysis, ABA.  Kari describes ABA as, “… looking at the behaviors in which people are engaged.  Some may be problematic. Others may be a skill we want to increase such as communication.  The objective is to maximize opportunities for positive growth.”

She goes further to describe how ABA helped Mia Smith adopt a behavior necessary for her safety and social development. “We designed a program to help Mia recognize and respond to a voice.  She was interested in several things.  But, if she was engaged in something, a movie or some other media on her mobile tablet, even if one of her favorite people said her name, she didn’t turn to look at them."

Part 2:  Kari’s shares her experiences in public schools.  Now, she uses these insights to aid parents and their kids with IEP meetings and other discussions with educators.  

Though Kari has moved to another company that doesn’t work with Mia day to day, she remains close to the Smiths.  Her experience with autistic kids allows her to be a friend and a resource, especially now that Mia is in school.   Any parent facing a meeting regarding an Individualized Educational Program, IEP, knows that it can be a stressful experience both for the parents and school.  Kari has worked on both sides of the table.  She often accompanies parents to the IEP meeting; however, she has experience working the in public school systems as well.   

“There are big challenges.  My role was organizational behavioral management, doing staff training in two school districts.  We worked closely with the special education director.  The school systems paid for contracted Behavioral Analysts to be deployed in schools.  Working in classrooms with teachers and para-professionals was a rewarding experience.  I performed staff development especially on autism.  I taught teaching strategies that are most effective to support teaching kids with autism, wrote behavioral plans, and implemented behavioral plans. 

"From my experience, most times the staff that is hired to work with these kids have limited experience and training in providing effective teaching methods.  Parents are typically frustrated with the lack of progress and lack of needs being met.  ABA is the number-one evidence-based process, but the presence in public schools is small.  Insurance pushes for children to be integrated into public schools instead of one-on-one therapy.  It’s not the fault of the staff.  The resources for them just aren’t there.  This means that kids who have ABA get their hours cut and progress slows in social, communicative, and behavioral skills.  So, it gets frustrating for everyone: the parents, the kids, the educators, communication breaks down into a cycle that’s not good for anyone involved.

"The really great results of having a partnership with public schools, which is rare in the U.S., pre-kindergarten through high school teachers were inspired to get a Master’s Degree in Behavioral Analysis.  A lead teacher with an advanced Behavioral Analysis degree will be able to program treatments for kids in more effective ways.  They can become better at modifying instructional design to be more effective. 

“Multicultural training is important for us as well.  Not being aware of cultural differences for something as simple as eye contact may lead to false impressions.  It requires having as much communication as possible.  An immigrant may speak English but not understand to the level needed to communicate effectively on these types of issues.  We try to accommodate for that and get an interpreter to really work out the details of therapy and differences in what we would normally see as a target.  So, cultural difference, we program for that.  We respect the differences in behaviors in which a parent may or may not choose to encourage."

Our last discussion was about the recent law, Ava’s Law, passed as Georgia SB1, requiring insurers to cover some ABA expenses; “The policy or contract may limit coverage for applied behavior analysis to $35,000.00 per year.”  This is a significant accomplishment for many kids that need the therapy.  Hopefully, there is more in the works.

Kari commented, “If you are going to spread ABA therapies out for a year, it probably covers ten hours a week.  The recommended intervention for most early learners is forty hours per week.  For education, whether it is the first IEP or the tenth IEP a parent walks into, I plan to continue to advocate for kids with autism and other special needs kids in that environment.  When a school may push for one thing in which the data show that something else or something more stands to be a better outcome, that’s how I can help.  However, ABA can help all individuals with disabilities or without disabilities alike.  ABA is such a useful scientific tool and I would like to lead efforts to expand it uses.”