Featured image forOne Mother’s Experience Navigating her Child’s Autism Diagnosis

Posted March 11th, 2017 by in Assistive Technology, PATF, PATF Staff, Stories, Support

One Mother’s Experience Navigating her Child’s Autism Diagnosis

Bonaia Rosado had been working at PATF as the Program Manager for two years when her daughter, Penelope, was diagnosed with autism. Recently, we visited Penelope and Bonaia at home, to take a look at the various assistive technology they’re using to help Penelope communicate more easily (you may remember them from this adorable video). Originally planning to write a story about their experiences, we sent Bonaia a list of questions to guide us in writing the article. Her answers were so raw, though, and so real, that after reading them we decided to publish the interview as is. Read on to learn about how this mother navigated her daughter’s diagnosis and began the process of living with and supporting a child with autism.

Bonaia, when did you start to get the feeling there was something going on with Penelope? What were the signs that led you to seek testing? I seem to remember her taking a while to begin talking, but were there other signs?

Penelope points to her tablet while Bonaia looks on, smiling.

Penelope uses an educational app on her tablet to practice identifying colors and using fine motor skills.

When Penelope wasn’t talking, that on its own I was kind of okay with, until we noticed she was crouching down to eat the dirt from the corners of the house. She would lay on her belly and strategically lick her finger to run it along the baseboards of the floor to get the bits of dust/dirt there. She also was quick to chew the bottom of dirty shoes. Otherwise she seemed to develop typically at first. THEN after seeing her peers and how they really looked at their parents (my friends) and interacted with them, it really started to worry us.

 

At that point it was still a “possibility”. Meaning it was also still an impossibility. Denial. Not until an experience I had at work, at PATF, did it really sink in that our Penny is most likely a special needs kid. Sandy Masayko, Director of Assistive Technology at Easter Seals of Southeastern Pennsylvania, was presenting about some of the technology they use at Easter Seals, and she played a video of a little boy with autism. This adorable little boy was on the screen. His mannerisms were so familiar and endearing. I immediately thought of Penny. Then I started to tell myself all of the reasons why Penny wasn’t like this little boy in an effort to, I guess, tell myself she was fine.

Vibrant painting of Penelope on a slide.

Bonaia is an artist as well, and in her free time she loves to paint. This is a recent painting of Penelope at the park.

I still remember the video, this little boy was struggling with brushing his teeth – simple, right? I noticed his mother’s face and her quiet frustration, a special brand of frustration that I think only mothers get, and the specialist trying to work with them on how to get him to do it, to do this totally simple thing typical kids at his age do. I stopped processing what was happening on the screen. I could only hear this little boy making this little whine-cry sound and I could hear Penelope’s cry.

That was the moment, the super awful moment, I realized something was truly wrong with Penelope. Remember that I’m at work! Sandy was an amazing presenter and she was so open and real. I started to ask a question. I don’t remember what my question was, but asking this question was the first step in accepting the fact that my kid may be delayed; my voice quivered. I think that if I worked anywhere else this would be the moment you make some excuse, run to the bathroom for a quick pow-wow with yourself, collect your feelings and thoughts alone in said bathroom and go back to being composed. But, I could feel PATF’s support as I wavered.

Tracy Beck, our Operations Director, who saw this play out, came over and explained to Sandy very briefly some of the concerns I had previously shared with the staff. This little gesture showed me her support; gave me a moment to process, gather myself, then ask my question. Sandy offered a comforting knowing nod and answered everything I asked.

I still don’t remember what we talked about. I just remember feeling that if Penny was diagnosed with a delay, I was in the right place.

I thought about all of the mothers who call us with these same questions and I wanted to hug all of them. I wanted to have all of our questions answered and shared.

Once Penelope was diagnosed, were there any things about her that suddenly made sense in light of the new diagnosis, or that you hadn’t realized might be related? Things she would do, or things about her?

Her need to constantly be engaged either physically or mentally made sense. Her frustration with communication was made really clear. Once I knew that she wasn’t just having a toddler tantrum, but becoming overwhelmingly frustrated to the point of screaming or throwing things because of not being able to make simple decisions; things like wanting milk instead of juice or water, she’s hungry or what she’d like to play. Once we knew her diagnosis, we started to understand her communication needs, and we were able to really pay attention to all of her subtle cues. From then on she was way happier and less frustrated.

How is Penelope typical of a child her age and how is she not typical?

Penelope jumps on a trampoline while watching TV.

Penelope’s trampoline is considered a form of assistive technology because the movement soothes her and helps her focus.

Penelope’s typical behaviors are her willingness and need for socializing, but right now, and this is very typical for a child with autism, she does not want to socialize with her peers. She doesn’t understand how to interact with another child or understand, for example, why the other child wants to play with dolls instead of playing a chasing game, which she wants to do in that moment. Other children don’t pick up on her subtle cues for what she wants to happen next, so this makes other children unpredictable and she becomes frustrated and sometimes scared of the unknown responses they might give her. This fear of not knowing how to play with kids makes her disinterested in playing with them, which is very typical for children with autism. Her ability to transition is not of a typical child, but her reaction to change/transition is not as severe or violent as other children with autism. She will be upset, but she is, for the most part, accepting of the change. What usually works best is if we give her a one to five-minute warning of when things will change and what will happen once the time comes.

Once Penelope was diagnosed, what did you do next? Early Intervention… the school she’s in… the process of getting her the supports she needs? How did you know what to do? If you care to comment on your own personal experiences with all of this… what it was like to get the diagnosis, feelings about all of it, finding the support needed.

We were lucky, I think. Twice! The first hurdle came when she was a little over a year old. She was not eating much, sick and losing a lot of weight. After several scary weeks of doctors’ appointments, her continuous weight loss, rashes breaking out all over her body and not knowing why, her pediatrician finally sat down with us. She looked at Penelope and then looked at us. I could see her thinking of reasons Penelope was so sick and losing weight. She finally said she’d like her to be tested for Celiac Disease. I had no idea what this was or what it meant. We got her tested and she was diagnosed with Celiac Disease. A lot of children are not diagnosed until around the age of four or five because doctors don’t figure it out quickly. By that point kids with Celiac Disease have damaged their intestines, and their physical growth and brain development is affected greatly. We went gluten-free and keep up with her supplements, and she’s now at the 90th percentile on growth charts. She’s a very healthy child.

Drawing of Penelope, vibrant and pink.

A drawing of Penelope from June, 2016.

Our second hurdle was Penelope’s speech delay. The first step when ruling out a variety of diagnoses, is to do a hearing test. During the hearing test her audiologist very quickly and casually mentioned reaching out to Early Intervention. This was our second lucky moment. Billy and I could have easily just said, “Meh, no big deal,” and not followed up, especially because the audiologist was so casual about it. We instead asked questions about Early Intervention and who to call. The audiologist gave us the information and we started the process.

Thankfully, I was constantly kept on track by the staff at PATF. When I’d go into work after seeing these specialists and dreading the next test, my co-workers, these women, these mothers, would remind me that Penny was going to be okay, that I was going to be okay, and to remember what questions to ask and what to take with me. While we went on this disorienting rollercoaster of doctors and specialists, PATF continued to provide me with much needed pit stops of support, translating anything we were told during these draining appointments with countless doctors. With all of these appointments, there were many times I had to take days off, leave early, or go in late to work. During all of this, PATF allowed me this magical flexible schedule. I cannot stress enough how crucial it was, for my own sanity, to have this kind of support.

Once Penelope was diagnosed with autism, I took a week to let it really process; asked myself what it would mean for my child to grow up and lead a meaningful life with autism.

This was the hardest part for me. Asking myself if I could do it, if I was smart enough to keep up with all the ways Penelope would need me to challenge her, if I would have the energy to do it and be consistent even when I was tired.

I remember how happy she was in the back seat on the way home from the behavioral specialist’s office after she told me the diagnosis. I remember getting home and turning the television on to Bob’s Burgers, Penelope’s favorite show, and I remember sneaking into the bathroom to cry. I cried for her. I cried for myself and my relationship with Billy, and I cried for the time I knew this would take away from my being a parent to Taylor, our other daughter. I did this in a span of 5 minutes, the maximum amount of time Penelope can be alone before she starts banging on the bathroom door. Really accepting all of this and then letting it become the new normal and then saying to myself, “Okay, now what?”

Penelope sits piggy-back on Bonaia while both smile and look off camera.

Penelope and Bonaia watch a TV show together.

Now that we were ready to start this new path, Billy and I realized we had no idea what to do next or who would know. Don’t get me wrong. People are telling you constantly what to do next but it’s always done in this vague way. In my experience, they would mention what the next step was but they wouldn’t tell me specifics, like who specifically to call and what building they were in. There was always a vague suggestion of needing to contact this other organization or doctor’s office and they’d hand you a stapled booklet with 30 pages in it. But no one ever told us which organization specifically or which doctor specifically and what the exact importance of that next step was.

There was a major disconnect between these people. We quickly learned to ask more questions until they realized we wouldn’t stop asking questions until they found out who we were supposed to call specifically, full name and their extensions. Keep in mind, none of these organizations helping us were ever mean and no one ever tried to brush us off, but because they don’t have the perspective of the parent, I think, they assumed a lot and did not realize how little we knew or how much we needed to know to effectively move forward to that next step.

The disconnect! It was like doing a relay race and each runner stopped several feet before they handed the baton on to the next runner! In each instance, I was the person physically picking up that baton and handing it off to the next runner to continue the race.

Penelope points to a PECS image of paint.

With direction from her speech pathologist, Penelope now uses Picture Exchange Communication System (PECS) to communicate what she wants to do.

Once we got hooked up with Early Intervention we still didn’t know what to ask so we asked everyone ALL of the questions we could think of. Everything from which vitamins she needed, to questions about her speech, to how will she drive her first car. The more questions we asked and the more people we talked to the clearer it became which questions to ask and who to direct the questions to. Penelope’s Early Intervention supports coordinators gave me their contact information and I used them a lot. Now I keep people’s names, contact information and notes on how they can help or what their specific jobs are all in a nifty 3-ring binder.

Getting Penelope the supports she needed and will continue to need was overwhelming at first. Actually, it’s still overwhelming sometimes. If you don’t come up with your own system for organizing all of these contacts, who they are, what they’re supposed to help you with and, most importantly, when they’re supposed to get back to you, you will become overwhelmed and things will not get done. It’s enough to make you crazy.

And since she’s started receiving services, what changes have you made and changes have you seen in Penelope?

Three sets of PECS images laid out on a table with a variety of options including activities like biking and painting and food like cheese and grapes.

Penelope’s PECS boards.

Since we started services, Penelope has been so much happier and we have been better parents. She has fewer meltdowns, Billy and I are better partners, Penelope is growing so much socially (for her), and we are getting the right tools and have an amazing team of people who answer our sometimes ridiculous questions. I am able to go into work a little later in the morning so that I can get Penelope on her bus to go to school. Her teachers are helping her learn to communicate by using a combination of her Picture Exchange Communication System (PECS) and gestures. She now has a “voice” and a way to communicate choices, like what activities she’d like to do, what she’d like to eat or drink, etc.

Having a method to communicate has made her so much happier.

She’s now better at transitioning from one activity to the next, she’s better at sharing and playing with Taylor, and she understands that it’s not about her all the time… for the most part.

So what are we doing now? We’re building her PECS board because Penelope is able and excited to learn new words and have a bigger variety of options for her everyday things, like games, food and books. She started out with 4 PECS on her board. She now has over 30, and has even graduated up to a sentence strip. This is a big deal!

Penelope approaches the camera holding up and pointing to a small square of paper with a drawing of cheese sticks and the word "cheese" printed on it.

Penelope shows off the “Cheese” PECS image that she just used to tell Bonaia what she wanted to eat.

And specifically, what assistive technology (AT) do you use to support Penelope and in what way?

We’re learning so much about Penelope, and when this was all new to me, I was afraid to see new behaviors surface or new outbursts because I kept thinking she was not progressing. But now I see these as clues and get excited because she’s just telling me, in her own cryptic way, what she needs. For example, Penelope chews on some fridge magnets sometimes. This tells me she enjoys chewing and it soothes her so we’re working on getting her a safe necklace to chew on instead. Kids with autism need different types of soothers depending on their sensory needs. Penelope is a very tactile kid, she enjoys the tightness of a hug and piles pillows on top of herself, seeming to be soothed by the weight of the pillows. She will sleep peacefully like this at night. So, we’re looking into using a weighted vest or blanket to mimic a hug. This was the first time I was able to see one of her behaviors and easily translate it to tell me, as her mom, what she needs. Anytime she does something like this and I notice it’s a pattern and she’s doing something to sooth herself I figure out what type of device will help her. There’s a variety of other devices we’re looking at, including an enclosed hammock seat to use as her “quiet space” for when she’s feeling overstimulated; and, Playfoam which is typically used to build little creatures but its texture is so soothing for Penelope. She squeezes it over and over and after 15 minutes she’s a lot calmer and able to focus on the next activity.

Bonaia paints Penelope's nails red at a table.

Penelope loves having her nails painted and insists on three coats.

Describe Penelope–what is she like, what are her interests? Any stories about her that are cute and illustrative of her general personality?

Penelope is such a happy person who loves to love.

She shows this to us, her family and friends, in so many ways. One of my favorite ways is her particular form of delayed echolalia. It is always intentional and usually used to comfort others or share a memory. She is repeatedly asked, “Are you okay?” either at school, her daycare or at home by us. She uses this same phrase when she sees us fall, trip, burn our mouths with hot foods or even look upset. She will ask this repeatedly until you answer in a very specific, “I’m okay, I’m okay.” Twice. Then she pats us and says, “You’re okay, you’re okay.”

When she hurts herself, someone usually holds her, pats her on the back and says “Poor baby.” When we hurt ourselves or if she perceives us to be in pain she will approach us, embrace us in a hug, pat us on the back and start saying what sounds like “Oh bobby”. This is her interpretation of “Poor baby,” but she’s genuinely making sure you are okay. She will do this until you pat her back as acknowledgment of receiving her patting.

In progress portrait of Penelope and Taylor.

In-progress painting Bonaia is working on of her two girls, Penelope and Taylor.

Her way of telling a joke is another of my favorites. It’s not an actual joke but she will repeat things that make her happy assuming that when she repeats them to you they will also make you happy. It’s usually part of a song.  For example, her favorite thing to sing at us, to share in this “joke,” is the end credit song to the movie, Rio. She cannot enunciate the words, but her pauses between what she perceives as the words and the intonations in her song make it clear to us which song she is singing. Once Billy, Taylor or I have caught on, we start filling in the blanks and sing along, at which point she will be so overwhelmed with joy that she starts laughing like she just told the funniest joke in the world. We, of course, will laugh along with her. Then she claps to signal to us how well she did telling that joke. It makes her happiest when we get the “joke”. I cannot describe how much her sharing this with us affects me. I perceive these moments as my daughter sharing her happiness with us.