FAS; complex developmental disorder and autism features, CP ataxic form; mixed developmental disorder, low height, hypermetropic astigmatism, functional heart murmur
From a family who met him in 2015: “Zeke is seriously one smart cookie!! He is walking GREAT now and was even jumping from a play mattress to join in the fun. He actually knows a few words in English as well, and I taught him to fist bump (and blow it up, ha ha) when I came in and he remembered it when I left and hour and a half later. I was blown away by his attention to detail in the books we were reading — he will excel academically. He was very attached to the American volunteer who is regularly in his groupa — all of the kids love her and are lucky to have her attention.”
From a family who met him in Summer 2015:
He appears to be of normal size for his age. He He can focus for pretty significant amounts of time if the activity interests him. We are now able to sit and flip through entire books together, taking time to figure out what is going on from the pictures on each page. He has become very good at identifying the characters’ emotions from their facial expressions and makes reasonable guesses as to why they feel how they do.
He is pretty stable when sitting. He’s not falling out of chairs or off of benches or anything. Sure, he falls sometimes when he runs, but the kid is running! He has been walking and running for a few years now; the boy dances!
He might be slightly cognitively delayed for his age, but he is a very quick learner and strikes me as very intelligent. We have as normal of conversations as I imagine are possible with a 6 year old. He has impressed me recently with some clever remarks that are evidence of him thinking quickly and independently, rather than just just parroting what his caretakers say. His emotional control has improved vastly. He just needs a calm presence when frustrated. For example, we were working with buttons the other day, and when he started getting frustrated and saying he couldn’t do it, I just calmly told him that it’s hard, that he’s really close, and that he’s totally capable, and he was able to complete the task.
Although he does still enjoy some solitary games, he’s becoming a lot more social. He always takes me around the yard to introduce me to people and knows everyone by name. He’s a pretty calm, happy guy, especially when there are calm, warm adults to help him get over little obstacles.
December 2014 UPDATE: A U.S. mom had these observations about Zeke: He’s a doll! He’s cheerful, helpful, and very friendly. Every time we entered the room he was the first to greet us (Labas!!). Zeke has a little issue with following directions. I don’t know him well enough to be able to distinguish if it was a willful issue or a cognitive issue. As far as I know he has FAS and possibly very mild CP effecting his legs/ Achilles’ tendon. Zeke is a very likable kiddo!
Update from a volunteer who spent extensive time with him:
I met Zeke in the summer of 2010 while volunteering; in the years that I’ve known him, Zeke has made considerable physical, cognitive and emotional progress, and has become an active, curious, quirky, good-natured, and nurturing young boy. As his physical abilities have improved, he has become much more independent, both dressing and feeding himself. He does, however, need some direction and encouragement with these endeavors. Zeke best completes such tasks when given positive reinforcement and clear sequence of events to follow. For example, if simply given a pile of clothes, he often has trouble focusing his attention. It is more effective to ask him what he needs to do first, second, and third, and to tell him how quick/good he is when he has completed a step in the sequence. If he is feeling unmotivated, it can be helpful to tap into his nurturing side (ex. “Put your socks on! Your feet will get cold and wonder why you didn’t dress them!”) or to incentivize him with tickling—his favorite activity in the world.
In the past year, Zeke has become an avid performer, bravely singing in dancing during musical lessons and performances in the children’s home. Even half a year ago, he would need a bit of coaxing to get up and join the other children in song. During this year’s holiday show, however, when the music teacher asked for volunteers to stand up and perform, Zeke was the first to rise to the challenge. He also really enjoys musical children’s films, often performing the routines from memory during playtime. One of his favorite toys is a little piano with a microphone into which he sings his favorite songs.
Zeke has a few other favorite games, which mostly revolve around caretaking and repetition. For instance, following the examples of the caretakers, he feeds, bathes and swaddles dolls, making sure to lovingly and carefully execute these tasks in the correct order each time; when waiting for the thermometer to show the doll’s temperature, he pets her head, rocking her back and forth. Another current favorite of his is petting me and telling me not to cry in a concerned, soft voice. After establishing that he has comforted me, he gets in his toy car, wishes me all the best, drives around the room, and comes back to take care of me again. Zeke has also grown to love animals, and when given the chance to be with a dog or horse, he always pets them, sweetly telling the animals that they are good and that he loves them.
Zeke is an incredibly nurturing, loving child, and delights in physical affection. He loves to be petted and hugged, and gladly returns the favor. He is very concerned with maintaining good relationships with the adults in his life and is sensitive to admonition. If he is beyond the point of being motivated by positive reinforcement, a serious look and stern voice usually suffice. If he sees that he has accidentally hurt me, he becomes quiet and sad, and seeks reassurance that everything is ok. Zeke is less sensitive with respect to the children around him, as he is possessive of his favorite toys and the other children habitually seek what another has. In the last few months, however, Zeke has made a great deal of progress expressing his emotions and restraining himself when he gets upset. Whereas he would previously go after the child to repossess his toy, I have consistently responded by wrapping an arm around him, telling him that we will all gladly help him if he calmly explains to us what is wrong, and he is now much better at seeking our help and articulating his feelings. When he is agitated, it’s best to take a calm, light-hearted approach to ease the tension; he thinks it’s hilarious when adults copy his little squeals and shenanigans, so he usually laughs if I playfully copy his whining, which gets him out of his rut and allows us to calmly seek a solution.
All in all, Zeke is a joyful, enthusiastic, loving child who responds to physical affection, positive reinforcement, and clearly established expectations. He has a friendly attitude towards new people, and seeks a great deal of hugs from the adults in his life. I have the utmost confidence that with patient, gentle and loving guidance, Zeke will continue to grow into a capable, kind young man who will enrich the lives of those around him. In the five years that I’ve spent with Zeke, he has certainly filled my life with more love than I could have possibly imagined.