Meet Pleun

I hope July 23rd is just as memorable to you as May 1st is to me.

On May 1st I woke up like any other Monday of the past year. I finished packing my suitcase and said good-bye to yet another family that had kindheartedly opened their house to me for a week. It always feels like you’re leaving part of yourself behind. A little bit of you that the people you now feel so close to will hopefully remember once you’re not there anymore.

"Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live births. Angelman syndrome is often misdiagnosed as cerebral palsy or autism due to lack of awareness. Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman syndrome will require life-long care."

Angelman Syndrome Foundation

I got on yet another bus and drove to the next city on the road. There’s always a tinge of particular excitement about Mondays in Up with People. There was always a moment when I sat on the bus where I felt the past week come to a close. That morning, that last breakfast you had with your host family, feels like it was weeks ago. In the words of Jack Kerouac, “[…]that feeling when you’re driving away from people and they recede on the plain till you see their specks dispersing? –It is the too-huge world vaulting us, and it’s good-bye. But we lean forward to the next crazy venture beneath the skies.” It is the excitement of not knowing where you’ll sleep that night. Not knowing if you’ll share a bed with your friend or if you’ll share a room with a 12-year old. Maybe your host family will speak English or maybe they won’t. I could have thought that day of all the possible experiences I’d go through that week and still never come close to how wonderful it actually was.

"Clinical characteristics of Angelman Syndrome:

Developmental delay - functionally severe.

Speech impairment - no or minimal use of words, receptive and non-verbal communication skills higher than verbal ones.

Movement or balance disorder - usually ataxia of gait and/or tremulous movement of limbs. Movement disorder can be mild. May not appear as frank ataxia but can be forward lurching; unsteadiness; clumsiness; or quick, jerky motions.

Behavioral uniqueness - any combination of frequent laughter/smiling; apparent happy demeanor; easily excitable personality, often with hand flapping movements; hypermotoric behavior."

Angelman Syndrome Foundation

Debby and Hans, my new host parents, introduced me to Nino, Keet and Pleun, their children. They took me to their house and promptly made me feel at home. Keet, who is six at the moment, gave me a tour of the house in perfect dutch. Over dinner we told each other stories and laughed at how similar our sense of humor was. Eventually, they told me that Pleun had Angelman Syndrome and since I did not know what that was at the time, they explained that it was a neuro-genetic disorder that affected her speech, movement and development, amongst other things. They explained that even though she couldn’t verbally talk, she created her own sign language.

"Speech and Language:

Language challenges are significant.

Use of 1 or 2 words consistently is rare.

This may be due to: Motor problems (low tone in oral area), oral structures (protruding tongue), intellectual disability, oral apraxia (difficulty with motor planning).

Most communicate by pointing, using gestures, and using communication boards and AAC devices.

When children have difficulty communicating, they may resort to pulling hair, hitting, biting. Make sure they have a communication system that is effective for their needs. Frustration with communication is often the reason for negative behavior. May not need a behavior plan but rather an effective communication system.

Imitation is difficult. This might not be the best method to teach communication and related skills.

Maintain high expectations as abilities and methods vary widely.

Comprehension is greater than output."

Genetics Education Material for School Success

One thing led to another and Keet, Pleun and I ended up dancing all over the living room. It had started nice and easy, kind of jamming to a Spanish song that I could vaguely recognize and 20 minutes later I was completely out of breath. It was unbelievable how fast and smooth that had been. How in a matter of seconds, playing the right song and doing the right moves will make you connect with people that don't even speak your own language. We didn't have to talk to know that we were doing a Conga line or when we would start following Pleun or when we would strike a pose. Words are important, but we tend to underestimate the fact that communication goes far beyond that. It is how big your smile is, how bright your eyes are and how hard you can laugh without muttering a single word.

"Children who have AS usually have relative strengths in nonverbal reasoning skills and social interactions.

Children can do well in regular classrooms when provided with supports needed to be

successful.

Full inclusion with therapies in the regular school setting provides greater learning

opportunities.

It is crucial that children with AS be able to make authentic choices in classroom and life."

Genetics Education Material for School Success

In my opinion, the best time of year to visit the Netherlands is during spring. The tulips take your breath away; if you bike, you don't get too cold or too warm; cheese markets are open during this time of year; the list goes on and on. But most of all, you get to experience King's Day on April 27th and Remembrance Day on May 4th. I hold Remembrance Day particularly close to my heart. It is a day to commemorate people who have lost their lives to war since World War II. I'm proud to call myself an advocate for peace and so, being in a ceremony that acknowledges and shows so much respect for people's lives, meant a lot to me. It wasn't about celebrating having won a certain war or the people that made that happen, but about celebrating and honoring everyone that got harmed in the process. To me, this is a far more important thing to do.

After the ceremony, we watched the band marching and Pleun, Keet and I joined them hand in hand. We were a couple blocks away from our house and we raced our way back. I'm slow and out of shape, so I lost.

"As Angelman syndrome research has accelerated, educational and behavioral interventions have been shown to be effective in the areas of communication, education, sleep disturbances and general behavior. Physical and occupational therapies, speech and language interventions, behavior modification, and parent training have proven effective."

Angelman Syndrome Foundation

On Sunday, our last day together I did my laundry. I couldn't put one of my dresses in the dryer, so I left it out to air dry. Debby and Hans told me that if I were to forget my dress the next day, they could drop it off for me in the next city on the road. I joked about how I would leave it on purpose so they would have to come visit me. Pleun asked over and over in sign language when they would be leaving to Belgium, which was the city I was going to visit after that. Pleun can't talk but she understands so much. So much, that she understands when we speak in a different language. She is extremely receptive and in my opinion, does not need language at all. I feel like I could just look at her and she would know what I'm thinking.

I could talk about Pleun and her family for hours and hours. On how much they changed my life, how much they made me feel at home in a different continent, how much I love them and how much I wish that one day my family will be like theirs.

I have heard people say that it is hard to have kids with disabilities. I understand what they mean and I don't want to minimize their struggles, because I have never experienced that first hand, but I do know that I never heard Debby or Hans say that it was hard to have Pleun. I've read how much kids with Angelman Syndrome are supposed to be limited, but I don't think she is at all and I don't think her parents think that either. In my opinion, Pleun could not have been more lucky to have been born in that family. They are warm and kind, but they don't spoil her. They give her independence and it shows. I am being completely honest when I say I hope one day I'll have a family like theirs, because it reminds me so much of my own. We have all been very lucky, not only to be able to say that the best gift life has given us has been our families, but also the fact that we found each other, half-way around the world.

I hope that you mark your calendars on July 23rd, just like I marked May 1st. Because the day you meet Pleun, believe me, is a memorable one.

Bibliography:

"The Facts about Angelman Syndrome". Angelman Syndrome Foundation. Retrieved July 23rd, 2017 from: https://www.angelman.org/wp-content/uploads/2017/02/Quick-Facts-about-Angelman-Syndrome.pdf

"Angelman Syndrome at a Glance". Genetics Education Material for School Success. Retrieved July 23rd, 2017 from: https://www.gemssforschools.org/sites/www.gemssforschools.org/files//library/pdfs_for_printing/pdfs-for-printing-2017/printable_as-4.14.17_0.pdf

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