Imagine what it must be like to have beautiful, unique, and important thoughts, but no way to share those thoughts with the world around you. Image if the people in your life had no way of understanding the depth of your ideas because you had no way to express yourself. Imagine if your competence was not presumed because you had no voice to prove otherwise. Imagine if you were constantly quizzed to prove that you understood the world around you, before you were given a chance to prove you have the ability to communicate, When that opportunity came, imagine if you were only given two options to choose from at a time, that someone else selected for you, and if you didn't like either choice, it was assumed that you didn't understand the question.
This is the unfortunate reality for many non-verbal children and adults. Many approach the task of communication for those with complex communication needs by starting with a handful of picture symbols and adding a few more at a time as the child demonstrates they can communicate appropriately. This is not what we do with neuro-typical children - we do not decide that we are only going to say 6 specific words and only those words around a baby. We know they don't understand everything we say, but still we immerse our babies in language, and that is how they learn language. Why would it seem appropriate to do anything different with non-verbal children?
Earlier this year, I was blessed to be introduced to the concept of robust communication, and our lives has changed since that moment. I am disappointed in myself and how I limited my son prior to providing him with robust communication book. My heart aches for the unspoken doubt I had in him and his capabilities. It is overwhelming to think of all the other children and adults in the world that have not been given this chance and how hopeless they must feel, living in this world without a voice.
We have embraced a robust communication system called PODD (pragmatic organizational dynamic display) that allows Curren to say whatever he wants, whenever he wants, to whoever he wants. We started out this summer by just modeling what was going on in his life in the form of aided language input - by narrating life and pointing to the symbols in his book that represented these thoughts. Soon after we introduced the communication book, Curren started pointing for the first time in his life. And he started pointing to symbol in his book. He has shared wonderful things with us - he loves asking to play ball, to make cars crash, to swing, for it to be quiet, and to brush his teeth. He can tell us that something's wrong, and ask for a sensory activity when he's overstimulated. He can tell us that his brother is silly, or that he wants to visit gammy, or that he's ready to go to bed. I recently began videoing our interactions and logging all the communicative functions Curren is able to initiate with his PODD book. In 30 minutes, Curren pointed to 91 symbols, that were all appropriate to the situation. This would not happen if we only allow him access to 6 symbols until he mastered those, only to add a few more at a time. In fact, it would take decades for him to have access to enough language to have spontaneous and genuine conversations if we took that approach.
I bring these points up because October is AAC awareness month, and I have personally experienced and heard many stories from others about the world not being accepting of these ideas. Not having speech is not the same as not understanding. All people have a basic right to affect, through communication, the condition of their existence. My son just wants to be doing what the others are doing.
My family is on a journey I didn't expect to take, and a foundation of hope has been my north star. Our journey can be inspiring but also many times daunting, and if we become hopeless we will lose our way. I would like to honor my son by sharing his brave journey.
Curren has been seen by 5 neurologists, 4 geneticists, a neurogeneticist, 2 developmental specialists, a GI specialist, an ENT specialist, 2 ophthalmologists, a orthopedist, 2 orthotists, a podiatrist, 2 psychologists, 2 pediatricians, 4 physical therapists, 2 occupational therapists, and 2 speech therapists - this has all been in the first 3 years of life. Beginning about 2 years ago, Curren ramped up therapy to 5 days a week, sometimes up to 4 hours in one day. He is a tough cookie, and he works very hard every day. Sometimes he forgets how to do the things he learns, but Curren never gives up.
Curren was born with a mutation in his HIVEP2 gene, but he was not diagnosed until he was 2 years old, after a long diagnostic journey. When reviewing his birth records, I noticed they recorded abnormal hypotonic behavior and muscular tone upon his first evaluation, but it was actually Curren's daycare that told me his muscle tone was not normal 4 months later. Between his low tone and difficulty with brain signaling, Curren has a very hard time controlling movement, especially in his legs. And although his muscles are strong enough to do it, Curren hasn't been able to crawl, pull up, or walk yet. He is, however, doing fantastic in his new wheelchair, and we are planning to get a mobile stander which supports Curren in a standing position but has wheels like a wheelchair so that he can move around and be at the level of his peers. Many people ask if Curren will ever walk, and it's a challenging question to answer. There is no way to know, but I have hope that he will.
We have been very blessed with good health over the past year, but that wasn't always the case. Curren was first sick when he was 4 weeks old, and was on antibiotics over 20 times during the first year and a half of life. He was diagnosed with reactive airway disorder at 4 months old, when he was in the hospital for respiratory distress. Curren also experienced a seizure and metabolic crisis event when he was two. Many of the other children with HIVEP2 disorder experience GI issues, but the only problem we have experienced is a failure to thrive diagnosis based on Curren's slow growth. We are also very fortunate so far to have good reports from the ophthalmologist, as eye problem are common for our community.
Perhaps one of the most challenging aspects of HIVEP2 disorder is the developmental disabilities. Like many others, Curren was diagnosed with autism, although he is actually very motivated by social experiences. The features of autism that Curren displays are regressions, language disorder, sensory integration disorder, and obsessive compulsive disorder. Curren is non-verbal, and it is so difficult for a child who has so much to say to not be able to say any of it. He understands what it going on around him, and he has intent for his legs, hands, and mouth to do certain things, but the message seems to get scrambled and the action doesn't happen the way it should. Lately, I ask Curren to touch his head (which is actually very challenging for him since he can't see it) and he starts clapping. I can tell from the look on his face that he is not thinking about clapping and is confused why his hands aren't touching his head, but the directions from his brain don't seem to be delivering the right message. I see this also in his speech. Once when we were in the hospital, and he was over it. He said clear as day "all done", but hasn't said it again in over a year. I can't imagine the frustration to have this disconnect between your brain and your body, but my son handles it incredibly.
On this journey, we have seen such kindness and compassion. It is so heartwarming to see Curren's fans, rooting for him to not give up. Curren has an exceptional team of professionals caring for him and looking for answers. We are eternally grateful to the doctors and therapists that are making a difference in Curren's life. It is not always an easy journey, but the people that support Curren do make hope feel more grounded. I am also so very proud of my son for the tremendous effort that he puts forth, and for his beautiful spirit that has not been subdued. I have hope for the future and what it holds!
And just like that, 2016 is drawing to a close. It has been a dynamic year of juxtapositions, with so many exciting new developments for Curren. It is also hard not to feel bittersweet, as I reflect on my hopes as we started the year. Would this be the year Curren starts to walk? Will he say a "first" word again, and keep it? I could not be more proud of the solid progress Curren is making developmentally, but it stings as reality sets in and the window for these milestones appears to be closing. Sometimes life feels like it is flying by and we are trying to just find a stable footing in the dust in order to take the next step. But it does not matter how slowly you go, as long as you do not stop.
We have had many beautiful moments this year. Curren started using a wheelchair, and it has given him his first real sense of independence. He has now mastered moving forward, now we just need to work on turning! We transitioned into a 3-day exceptional education public school program and are so thrilled with the learning opportunities and care that Curren is receiving. We also traveled to Baltimore and New York to meet with experts and have made wonderful connections through that process. As a result, Curren was featured in the Wall Street Journal in a story about Dr Chung, and we organized our first HIVEP2 virtual family conference, with 5 families and many researchers and clinicians in attendence. There are many new opportunities on the horizon and the future is looking very bright.
I think the most difficult aspect of this past year really boils down to one issue - the challenge of communication with a non-verbal child. Any other problem is just compounded when we are not able to understand what Curren is trying to tell us. Last night, Curren cried for hours before he finally fell asleep and there was no way for me to understand what was wrong, what was hurting, or what he was feeling. At times, the lack of effective communication can be heartbreaking. Bigger still, is the task of maintaining an almost irrational faith in society; that my son's vulnerability will not be taken advantage of when I am not there to protect him,
Not being able to rely on verbal communication opens the door to many other meaningful nuances that would most likely be otherwise overlooked. Curren has developed a range of inflection that is a language of it's own. He speaks more like a song bird, with changes in pitch and tempo to indicate different emotions, Curren has also become very good at mimicking and echoing intonation and cadence. It is his way of engaging people. Because he can't yet verbally communicate, Curren relies on his charm to draw attention, and he is developing quite a repertoire of interactions. Without words, we are forced to read more into body language and expression, and it is so much more powerful than words. Five pats on the back means "I love you", a dramatic shake of the head actually means "I really like this" instead of no, and a crooked smile to the right means "I am proud of what I did". It is a beautifully meaningful way of communicating.
One of my favorite movie characters said, “Do you know whatcha gotta do, when life gets you down? Just keep swimming, just keep swimming.” (thank you Dory and Ellen)! Whether you are feeling lost in unfamiliar territory, fighting battles that seem unbearable, or struggling in a rut and you feel you can’t overcome - these are words that symbolize what it means to truly persevere to the end. Moving into 2017, there is so much to be excited about, but when the challenges come, we will “just keep swimming, just keep swimming”. Happy New Year to everyone!
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I am a mother, architect, wife, and a lover (not a fighter) - with a thirst for knowledge. My journey been recently refocused, as my family navigates through the world of medical and developmental uncertainty in hopes of providing every opportunity for my son to be his personal best in life.