ABA…it may not be what you think it is

If you’ve ever broached the subject of applied behavior analysis, better known as ABA, with me, you know I’m pretty passionate about the form of therapy. I joke that I sell it as if I’m going to make a commission off of it--that’s because I believe so strongly in it. There are folks who feel completely opposite from me about ABA. Others simply don’t understand it and therefore have misconceptions about what ABA is and isn’t. About 18 months ago, I was fairly clueless about ABA myself. With that in mind, I thought I’d devote a blog post to ABA and put my sales pitch in writing. I’ll also share how ABA has tremendously improved Emelyn’s communication and independence skills over the past year, something that no other form of therapy or educational setting has been able to do.

I’ve heard the following statements more times than I can count, “But isn’t ABA for kids with bad behaviors?” or “My child doesn’t really have bad behaviors.” or “Isn’t ABA just for kids with autism?” If you’ve said one of these things, don’t feel bad, you’re not alone in your thinking. I’m sure I, too, had some of these same thoughts. ABA does sometimes get a bad rap, likely because not everyone does ABA properly. I also think the name, with the use of the word “behavior” is part of the issue. Most people see the word behavior as something that’s bad. If you’re one of those people, substitute the word “action” or “activity” anytime I say behavior. A behavior can absolutely be something positive or beneficial, such as using the potty, feeding yourself, or signing or verbally requesting a want or need. When you think about behaviors in that way, they seem much less negative. Therefore, if your child doesn’t have “bad” behaviors to decrease (though I find that hard to believe because we all have behaviors we should probably examine) then ABA will simply allow you to increase positive or beneficial behaviors.

Emelyn sporting her Halloween shirt
from her ABA clinic.

One of the first things our ABA team taught us was that all behaviors are caused by one of four reasons:

1. To gain attention.
2. To access a desired object/activity.
3. To avoid an undesired object/activity.
4. To fulfill a sensory need. 

I’ll go in reverse order to address these reasons for behaviors and give a quick Emelyn example:

#4, to fulfill a sensory need, that’s something like chewing on a finger for oral sensory input or flapping arms when excited. These are behaviors that fulfill a specific need for the individual displaying the behaviors and for that reason, they need to be addressed carefully with a Board Certified Behavior Analysis (BCBA). Emelyn, like many girls with DDX3X, is a finger chewer. By redirecting her finger chewing with a chewy tube or providing something to occupy her hands, we are working to decrease the behavior.

Emelyn and Hattie getting a little sensory input with cooking spoons.

#3, to avoid an undesired object/activity, is sometimes referred to as escape behavior. Emelyn, for example, used to kick, cry, and thrash when it was time for us to brush her teeth. By not allowing her to get out of the activity, we quickly established that we were going to brush her teeth whether she liked it or not. We started with just a few seconds and built up from there. We can now brush her teeth for 40 seconds with very little issue, but probably more impressive is that she’s quite cooperative at the dentist. Sometimes Emelyn’s escape behaviors are far less obvious. For example, she sometimes uses her cuteness to get out of work. It’s tricky to spot if you’re not a trained ABA professional (we frequently missed these), but her ABA team sees right through her cute work avoidance behaviors.

#2, to access a desired object/activity, is one of those behaviors that is easy to show the difference between a “bad behavior” and a “good behavior.” Let’s go with “bad” first. When Emelyn is in her chair awaiting her oatmeal in the morning, she’s been known to throw a pretty ridiculous fit. By crying, banging her tray, etc. she’s trying to gain access to the food without being patient. We ignore the behavior, as if it’s not happening, and get her food to her as soon as she calms down. On the flip side, when she waits patiently for her food we acknowledge her patience with, “Good job waiting patiently for your food Emelyn.” Basically, we don’t give attention to the undesired behavior and we do give attention to the desired behavior. Going a step further, if she was using her sign language to sign “eat” then we would acknowledge her with, “Emelyn, I see that you’re hungry. Thank you for waiting patiently. We’re getting your oatmeal ready as quickly as we can.” While I’m not sure she fully understands all of that, she does understand positive language/attention and that’s the important part because that’s how we increase desired and beneficial behaviors. Because of the recent success with sign language, we’ve been working to increase her use of signing. We’ve started with highly motivating signs, such as “read.” She quickly caught on that signing “read” was how she could get a book read to her. It’s cause and effect, the positive behavior gets her the desired object/activity.

Emelyn and Hattie can often be found pulling
books out of Emelyn's book bin.

#1, to gain attention, is probably the biggest as you’ve seen it woven into some of the above examples. It kind of intertwines. Every kid wants attention and I fully believe all children deserve attention. The key is to be sure you’re giving attention to desired/beneficial behaviors in an effort to increase those behaviors and not giving attention to an undesirable/negative behavior in an effort to decrease those behaviors. Most of us know the rule about tantrums, ignore them and they go away, give them attention and you’ll send the message that they work at generating attention. It’s the old adage, “what you permit you promote.” There are other negative behaviors that are a bit more subtle and those are the ones that BCBA’s really do a nice job helping you decrease.

Let’s talk about attention as it relates to desired behaviors. About six months ago Emelyn’s ABA clinic informed us they wanted to start potty training Emelyn. Patrick and were both 100% skeptical. They implemented a reward system for successful voids and we followed suit. First, we decided to try M&M’s. As it turns out, Emelyn seemed confused by the M&M. What got her excited was the enthusiastic, “good job, Emelyn!” that she got after she had a successful void. We’ve now implemented a special potty song in addition to the positive praise. Attention is a powerful motivator, at least for Emelyn. When she does something like use the potty, feed herself, follow instructions, i.e. desired behaviors that are tied to her future independence, she’s really proud of herself and we want to encourage her excitement by showing our excitement.

We teach extended family ABA principles to
help them better understand how to react
(or not react) to Emelyn's behaviors.

   
Another misconception about ABA is its delivery method. I’ve heard of ABA being implemented in public school settings, but I’m not very knowledgeable about that, so I’m going to touch on the two I am knowledgeable about:

• Clinic-based: This is how Emelyn receives ABA. She goes five days a week for six hours a day. The word clinic may sound harsh, but visit a clinic-based ABA program and you’ll likely find a facility that looks far more like a pre-school than a clinic—there are toys, learning centers, music circles, and peer engagement areas. In order for children to receive clinic-based ABA, an autism spectrum disorder is required by insurance. 
• Home-based: Emelyn also receives home-based ABA twice a month. This is to be sure we’re implementing the clinic-based plan in our home, and more importantly, that we’re collaborating on the best ways to increase communication and skills of daily living. In Virginia, in-home ABA is covered without an autism diagnosis for children on Medicaid with a developmentally delayed diagnosis. Many families, especially those with older children in the school system during the day, find home-based to be the best option for their family.

How do I know ABA isn't just for kids
with autism? Because we apply these same
principles to our typically developing
kiddos.

To me, ABA is about finding the right motivators to increase desired behaviors that will help Emelyn develop the skills she’ll need to live as independently as possible. A trained ABA professional would probably say, “Jamie, there’s more to it than that. You’ve left out the whole piece where we measure and chart all of this progress.” (Which is totally true! And I’m sure there is even more I’ve left out.) But, for me as a parent, I know my daughter understands cause and effect and ABA taps into that. Knowing that ABA is more involved than what I’ve explained here, I hope I’ve given you enough information to at least get you thinking about its possibilities. As with all things, do your research and be sure you’re picking an ABA program that’s reputable and working towards the right goals. Visit multiple providers and ask lots of questions. When we picked Emelyn’s clinic we picked it because my momma-gut said it was the right place for her. I’m glad I listened because Emelyn has made tremendous progress and that’s critical at her young age. Her ABA team cares deeply about her future and they are constantly working toward the goals we established together.

People are a great motivator for Emelyn and
that includes her baby sister, Hattie.

I have to give credit to Lauren Abel from Next Steps Academy in Houston, TX. Last April, when we went to Chicago for our very first DDX3X family day, she came and sat down with Patrick, Emelyn, and me. She told us that she was compelled to come talk to us and I’m so glad she did. She saw Emelyn’s potential at a time when we were struggling with Emelyn’s current educational setting. They were seeing her deficits, but Lauren saw her potential. She inspired us to find a team of people who see nothing but potential in our little Emmy.

Reflecting on 2016

Everyone I talk to tells me the same thing, “2016 has been such a busy year.” Our family is right there with you. And for that reason you’ll have to excuse my lack of posts this year. While it’s been hard to take the time to create posts, we have found time to be very grateful for our family, especially our sweet Emelyn. Here are just a few things we’ll be giving thanks for as we reflect on Emelyn in 2016:

School: Emelyn continues to make tremendous progress at her new school where she has been since July. I can’t tell you how grateful we are to have found this school. The goals they are working towards each day are truly meaningful to Emelyn’s development and independence. For example, Emelyn is more willing than ever to walk with support, likely because her goals at school include walking in her gait trainer three times a day for seven minutes each time. Once she becomes more stable, which will come with practice, she’ll be walking more independently in the near future. We’ve also seen Emelyn’s ability to feed herself, follow instructions, and make meaningful contact with the world around her improve as a result of the goals they are working towards at her school.

Care team: I joke regularly that Emelyn has an entourage. She has therapists, teachers, care providers, doctors, case workers, and more. Each one of them love and adore her and are constantly plotting with us to be sure we’re doing the best to help her progress towards independence. When Emelyn switched schools her old care provider, Jean, had to find a new position that offered full-time hours. While we were sad to see her go, we were grateful we’ve been able to keep a close relationship with Jean. They now see each other weekly and get to hang out on the weekends about twice a month. It took us a long time to find Jean, but to our surprise finding her replacement was oddly simple. Patience began with us in August and had worked with Emelyn in the infant room at the daycare she went to before it became clear daycare wasn’t a good fit for Emelyn. They’ve picked up right where they left off and buzz around town from school to PT, OT, speech, hippotheraphy, and swim therapy. We’re grateful to have such incredible people as part of “Team Emmy.”

Health: For some children with DDX3X there are sometimes significant health issues that come along with the diagnosis, including seizures, heart problems, eye issues, and more. We’re very grateful that these continue on our radar to look out for, but not a reality for Emelyn. This fall Emelyn had an inpatient EEG (known as an SMU) at UVA. She was a champ as you can see. She looked more like she was at the spa than having 20+ leads glued and then unglued from her head over the course of 24 hours. The test told us that while Emelyn’s brain waves are not typical, there are no signs of seizures. She also had an eye exam that raised no red flags.

Community: Just this weekend I had the opportunity to attend my work Christmas party for our foster parents, adoptive parents, and sponsored residential providers. I brought both girls with me and within minutes of walking in the door was approached by a woman who promptly greeted Emelyn by name. I had never met this woman in my life, but she knew Emelyn. Turns out one of her foster children attended hippotherapy at Healing Strides and she saw Emelyn each week. She asked if it was okay that she had added Emelyn to her church’s prayer list. I, of course, was more than grateful to her and her church for their prayers. And then it happened again, another woman, this time an adoptive parent, approached us. She said when her family walked in her son immediately said, “Look mom, it’s Emelyn!” They attend physical therapy together. In just two hours, with these two families, I was reminded that there is a community of people out there who love Emelyn and pray for her—people who we don’t even know. There are probably a few of you reading this blog right now who we do not know, but know we’re grateful that you are a part of Emelyn’s community.

Church: 2016 has brought a change for us on Sunday mornings. We were sporadic at best when it came to our church attendance, but this year we’ve made church a priority as a family. Just last week Emelyn was doing her normal chatting and giggling during the service, so Patrick got up with her to step outside. One of the church members, an usher that specific Sunday, told him, “Don’t you ever think she’s a bother to anyone. Everyone in this church loves that little girl.” And I truly believe that. There are countless couples and families at our church who cheer Emelyn on as she walks into church, but my favorite are the children who get the biggest thrill out of getting her to smile and giggle.  

Friends: This blog isn’t the only thing that’s been neglected this year. Between work, the girls, working on my masters, the pregnancy, building a house, and moving twice in one year, I haven’t been the best at keeping in touch. That being said, every time I do get a chance to catch up with friends the first topic of conversation is typically Emelyn. Both Patrick and I are grateful to our friends for asking about Emelyn and not growing bored of our constant talk of Emelyn and her progress.

Family: It truly takes a village to raise a child…with or without special needs. If it were not for our family we’d all be a bit frazzled in the Snead household. Our parents chip in to get our girls to and from school each day, watch them on weekends when we need to do school work or work on the house, and feed us when one of us is playing single parent on occasion. Our extended family is only a call away and ready to chip in too when our parents aren’t available.

Diagnosis: Receiving the DDX3X diagnosis for Emelyn last year connected us with so many other families who understand what it’s like to walk in our shoes. Twice this year we’ve had the opportunity to connect in person with some of these wonderful families. We traveled to Chicago back in April, then to Pennsylvania in October. We also did some fundraising this summer and raised $1,700 for the DDX3X Foundation to support research. If you were one of the folks who donated please know how grateful we are for your contribution.

Siblings: Yes, you read that correctly, that’s plural. Aubrey and Emelyn will welcome a new little brother or sister next month. Aubrey’s an amazing sister to Emelyn and we figured, why not add another super sibling to “Team Emmy.” Life in 2017 may get a little busier, but we’re grateful to fill our home with even more love.

As our family looks back at 2016 we’re grateful to have you as a part of our journey and as part of “Team Emmy.” Merry Christmas and Happy New Year!

Advancing research

In Chicago we heard from UCSF neurologist Dr. Sherr, Franklin & Marshall College neuroscientist Dr. Jinks, and University of Queensland neuroscientist Dr. Richards about their research around our daughters’ DDX3X mutation. While each of these researchers, along with their wicked smart student researchers, are approaching their research in different ways, they’re all collaborating and sharing information. I wish I could explain exactly what each one of these teams are working on, but I’ll be really honest and say tenth grade biology was more than 18 years ago and much of what they talked about went way over my head.

Dr. Jinks came over and chatted with Patrick, Emelyn, and I
about his research prior to his presentation. 

Here is what I can tell you though, the ultimate goals of the research over the next few years are:

(1)    Understand the biology of the condition

(2)    Test whether we can (and by how much) improve the condition with post-natal intervention

(3)    Develop drugs or other approaches to treat the condition

To achieve these goals, these researchers and their teams will need to create a mouse model where the mice are bread with the DDX3X mutation. The researchers will then attempt to answer questions like…Can the DDX3X mutated gene be replaced with a non-mutated DDX3X gene to essentially reverse the condition? Is the DDX3X mutated gene too active, not active enough, or inappropriately active? Are there other similar gene mutations that can guide their DDX3X research or can efforts be combined? Just to name a few.

Currently, the researchers are working off some existing funding, but their funds are very limited. To create the mouse model will require new funding. We’re looking at needing to raise around $225,000 to fund the next two years of research. While grants may be an option, the best chance at making this research happen comes from us—the moms, dads, families, and friends of our DDX3X girls.

We’ve been told by the researchers that the DDX3X families are some of the most active and engaged families they’ve come across. This condition is so newly discovered, yet we already have an extremely active private Facebook group, a website (ddx3x.org), and a foundation (The DDX3X Foundation Fund). According to Global Genes, approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease. To say we are blessed to be a part of this very special group would be an understatement!

Along our journey, so many people have asked how they can help support us. If you’re one of those people and in a position to help, here are a few ways you can support the effort:

• Give a little, get a lot! Our sweet, kind Aubrey has also been asking, “How can I help my sister and her friends?” This summer she’s on a mission. We’ve ordered DDX3X wristbands to help Aubrey with her fundraising efforts. She’s asking for a minimum donation of $5. Since our family paid for the wristbands, 100% of the funds Aubrey raises will go straight to the DDX3X Foundation Fund. Her goal is to raise $1,000 before school goes back in September. Maybe even better than the wristband, is that each donation also gets you a picture of Emelyn and Aubrey from their latest photo session.
• Make it tax deductible! If you’re interested in making a tax deductible gift, you have two options. Since the DDX3X Foundation Fund is a 501(c)3 non-profit, your donation is tax deductible. You can donate directly on the www.DDX3X.org site, just click on the Donate button in the top right corner to make a donation to The DDX3X Foundation Fund. Or you can give (or mail) Aubrey a check, made payable to The Delaware Community Foundation with DDX3X Foundation in the memo line. If you need our new address (we moved in March), please email me. I’ll submit all the checks in one batch once we have several and The Delaware Community Foundation will send you out a tax letter acknowledging your donation. And Aubrey will gladly send you’re a DDX3X wristband and photo of her and her sister.

Aubrey's assembling bags with a DDX3X wristband
and a picture of Emelyn and her.

Many of the families are banding together to raise funds and we’re excited to be doing our part. I’ll be sure to update you on our fundraising efforts. And as we learn more from the researchers, I’ll be sure to share. Until then, I’ll be brushing up on my biology.

Another milestone for Emelyn...3!

I apologize I haven’t been very active on the blog this year so far. As many of you are aware, it’s been a busy few months for our family. Probably the biggest news is: we sold our house! We’ll break ground on our new house next month. On top of that, we’ve each been busy with work, school, and other activities, but I do want to give you a quick update on how Miss Emelyn Grace is doing, so here goes:

Emelyn celebrated her third birthday on Sunday. I still can’t believe she’s three years old. If you have the opportunity to ask her how old she is, I recommend it, she thinks it’s the funniest question ever! She’s continuing to grow and thrive.

Emelyn's delicious birthday cake made by the
talented Lisa Link. Emelyn loved the lemon filling.

Look how tall I'm getting!

School seems to be going well. She’s certainly learning to share. Unfortunately, she’s mostly just sharing germs. She’s had a few colds, plus pink eye and strep throat. All of which she’s kindly shared with me. (She shared the strep with Jean as well.) All things considered, we’re grateful to have only had to deal with these minor illnesses.

Emelyn has also re-started speech therapy. When early intervention ended at the beginning on January, we decided to reevaluate speech and selected a new provider. While we really liked our previous two speech therapists, we felt it was time to try something new. So far, we’re very pleased with the new direction we’re getting. One of our main goals for Emelyn continues to be communication.

Emelyn certainly knows the word "swing."
Her arms instantly go up in the air when
you offer to go swing.

On Monday, Emelyn will start up hippotherapy again. I’m very excited for her to be able to get back on the horses and to see what this session brings in the way of progress for her. Her other therapies, like physical therapy and music therapy, continue to go well. Any day now Emelyn should be the proud new owner of a gait trainer to help her develop her walking skills. Until then, she’s become quite efficient at using her signature crawl to get her around.

The next few months will continue to be busy, but I’ll be sure to update the blog with progress and pictures of Emelyn at hippotherapy and in her new gait trainer. We also have a special Chicago trip planned in April for Miss Emelyn. More to come on that!

Aubrey was a big helper with Emelyn's birthday
presents. Emelyn thinks her big sister is quite the
comedian.

Worry

At our house, we spend a lot of time focusing on the here and now. While the here and now is sometimes stressful and chaotic, it’s often filled with a sense of happiness. However, I’d be a liar if I told you I don’t worry about Emelyn’s future. While I don’t have a crystal ball, her diagnosis gives us a glimpse into her future. Emelyn will likely face challenges with communication as many girls with DDX3X are non-verbal or have very limited spoken language. Due to Emelyn’s low muscle tone, she’ll likely struggle with both fine and gross motor skills making everyday tasks like climbing stairs or preparing meals cumbersome. We work every day with therapies at school, in the clinic, and at home, to help Emelyn overcome these challenges, yet the worry is still there.

Last week, I had the opportunity to meet Beth and her older sister, Melissa. They also gave me a glimpse into Emelyn’s future. Beth, now a grown woman, was about Emelyn’s age when her parents received her developmentally delayed diagnosis. While Beth’s mother served as her advocate for much of her childhood and into adulthood, it was Beth’s sister, Melissa, who picked up the torch to keep Beth’s best interests front and center as their parents aged. As Melissa and I spoke for the first time, we brought each other to tears. I admitted how I once thought Emelyn would be a burden to my oldest daughter, now and into the future, but how I’d really grown to know that wasn’t true. I told Melissa her relationship with Beth gave me so much hope and joy for my own daughters. Melissa told me that Aubrey will not only want to take care of her sister, but she’ll be in a better place to empathize and care for others for the rest of her life. “She’s going to be an amazing person because of her sister,” she told me.  

Aubrey was super excited to get footie pajamas, but
even more excited when her sister got a matching pair.

Aubrey’s not blind to Emelyn’s developmental delays. In fact, when Emelyn was born, so were several other babies in and around our family. Those babies, now approaching three years old, have been walking and talking for nearly two years. We’ve always told Aubrey, and other children who ask, “All children are different and Emelyn is just on her own schedule.” It’s not a lie, but it’s not the whole truth either. I’ve always wondered, do we sit Aubrey down and have “the talk” with her about Emelyn? While we’ve always answered every one of Aubrey’s questions with as much detail as necessary for a six year old and tried to encourage her to share her thoughts and feelings about things that concern her, “the talk” always seemed unnecessary, at least right now. I was grateful to Melissa for reassuring me that I don’t have to have “the talk” with Aubrey. She told me Aubrey will learn from Patrick and I how to stick-up for her sister. And one day, when the time is right, “the talk” will just naturally happen. Until then, we’ll let Aubrey observe, ask questions, and continue to develop a profound love for her sister.

Most younger siblings look up to their
older siblings...in our house, it's Aubrey who
looks up to Emelyn.

Worry…it’s a pointless activity all parents do. Before Emelyn, I spent far too much time worrying (and complaining) about the most ridiculous things, and I’m not saying I don’t do that anyone, but I can promise you it’s a lot less frequent. Being a special needs parent brings a different perspective to life and for that, I’m grateful. I’m grateful this different perspective will be a part of Aubrey too. Meeting people like Melissa and Beth is a reminder of the love and support that will always fill Emelyn’s life. And because of that, I have no reason to worry.

The next great adventure

As 2015 comes to an end, so too does our Early Intervention services for Emelyn. And with the end of Early Intervention comes Emelyn’s next great adventure. On January 5, 2016, we send our 26 lb. two-year old off to East Salem Elementary School. Two days a week, she’ll be picked up by a bus in front of our house and taken off to Salem’s preschool special education program. While I wasn’t terribly sentimental about the change, another member of our family couldn’t seem to contain her emotions. Yes, Aubrey! When we casually mentioned Emelyn’s new adventure to Aubrey and she instantly became very sappy. At one point, in a high-pitched, shaky voice she declared, “I may actually cry tears of joy.” (She’s also quite concerned that Emelyn doesn’t have a book bag and school supplies. Emotional and practical, that girl.)

Emelyn and Aubrey visiting Santa in New Castle to
kick-off the Christmas season.

To Aubrey, going to school means Emelyn will learn to talk and walk. And to some extent, she’s right. While I don’t think Emelyn will be delivering messages to Aubrey’s East Salem friends, like Aubrey would like her to, I do have great hopes Emelyn will find her voice in preschool in 2016. It may not be spoken language, but maybe she’ll be able to find ways to “speak” to us using an alternative communications method. And between Emelyn’s curiosity about walking and the goals we put in her IEP (Individualized Education Program), walking independently in a gait trainer is a reasonable expectation this coming year for Emelyn.

For me, I’m also excited to have Emelyn around other children. Being at home this past year has given her the much needed one-on-one attention necessary to gain many new gross motor skills, not to mention some much needed weight. But now it’s time to work on her socialization skills too. While she always scores fairly high on the social/emotional developmental scales, she could definitely benefit from being around other children her age. 

2015 brought many exciting achievements for Emelyn. In the motor skill area, sitting independently without the fear she may topple over, manipulating objects with her hands in a much more meaningful way, transitioning from her belly to a sitting position, crawling on hands and knees/shins, pulling to stand, and even a little cruising on furniture were new for 2015. She’s also increased her receptive language skills, as well as, added a couple of inches of height and about six extra pounds of weight.  What will 2016 bring? While it’s hard to say exactly, we are very optimistic Emelyn’s next great adventure will bring more achievements for our curious little peanut in 2016. Merry Christmas and Happy New Year!