MORE OF THE CHILDREN

Someone recently asked me if I am working with anyone other than Shaffique and Lokiru…the answer is YES!!!! There are so many boys here that need help…I am having to prioritize given the fact there is only 1 PT, namely me….

The Bethlehem Home houses around 200 + children. A good 1/3 of them are disabled in some way. Much of what I see includes: Cerebral Palsy (primarily), spinal cord injury, head injury, club foot, Down’s Syndrome, Epilepsy, mico-cephaly, and hydrocephalus.

There are multiple severe contractures resulting from non-treated CP and status post head injury. We also have several children who have no visible disability and who can move normally but present with learning disabilities and autism. These are just as severe a disability because if a child cannot manage self care on his own, then he will not have the opportunity to go to school and will need to rely on outside help for the rest of his or her life. That is, trusting that there is a place that will house them for their life span.

Sad to say, many of these children were found on the streets alone dropped by parents or family members unable or unwilling to care for them. Disability is still looked on by local people as a curse and this mentality is slow to change. The Brothers are giving them a chance at a comfortable life and environment of love and family and even the chance at school if they have potential.

Here are only some of the kids whom I have been working with:

1)   Peter: Around 7. Spastic Cerebral Palsy. No cognitive deficit. Did not speak and could not stand without help. Was able to scoot-crawl.

Peter and his new "duds" 

Now is standing most of the time but still has to hold onto something. Can stand for 1-2 seconds without support. Starting to verbalize his needs but needs reminders to speak up. LOVES to spend most of his time walking using the 4 Wheeled walker. Can maneuver it alone on level surfaces and can go up (not down) small ramps. Waiting for his loftstrand crutches to be built so he can walk on his own.

2)   Martin: Age unknown but around 6-7. Some form of sensory integration issue with ADD. Did not speak, tended to pick fights and bite the other kids. Unable to sit still or be held. Smiling despite being disciplined all the time. Not interested in learning. Tending to get himself into trouble most of the time.

Big toothless grin!

Thanks to my OT/PT friends (Robin, Darlene, & Barb, I have tried a few things with what they suggested. Martin is now able to repeat sounds with me…can make it through 1/ 2 of the alphabet before getting bored and running off; has started saying a few words (hello, sit down, stand up, walk) and is starting to make animal sounds with me (as long as I don’t look at him and am busy doing something else as I make these sounds with him) He is not biting much at all and is coming up to me for hugs (quick ones but hugs none-the-less)

        

3)   JUSTIN: Age unknown but around 6. Similar to Martin. Used to tap on you to get your attention and then point at nothing in particular and say tu tu. Was incontinent. Did not speak otherwise. Could not express what he wanted.

Favorite saying "Tsu Tsu" (which means he needs to pee)

Now, is able to say ¾ of the alphabet and repeat sounds. Better attention span than Martin. Now is able to repeat words but does not say them spontaneously. Is now continent thanks to watching me train Shaffique. Still has temper tantrums but will respond to being held and given attention.

4)   Abed: Age 10. Small for his age appearing more like 2-3. Most likely had a stroke when an infant but then closed head injury on top of that along with epilepsy. Was sleepy most of the day, unable to sit upright without support, drooled constantly, nystagmus (eyes rapidly moving back and forth), was sick with upper respiratory illness most of the time. Unable to feed himself. Not able to move on his own or crawl at all. Unable to hold himself in a 4 point position.

Now standing and starting to crawl!

NOW…thanks to the help of Douglass the Medical Officer, Abed is now stable medically, having less seizures and is now alert much of the time. He has not had an illness in over 3 months. He even just started GROWING now and has grown 3” in 2 months!!!

He can now maintain a 4 point and high kneel position on his own and is now even crawling on his bunk (usually over his bedmate). He can stand with minimal support for short periods of time and can advance his feet for walking when supported with his arms. He is drooling less and is able to put his own food in his mouth 25% of the time. He is now even reaching out to play with the other kids.

5)   TUSUBIRA: One of my favorites from day one. He is about 6. Was generally in a constant state of banging his head against the cement floor and crying or screaming. One of the volunteers thought he was possessed (had to do some education there). He has CP, has signs of a past head injury and is autistic. He was not able to make eye contact with anyone nor keep his gaze on any object at all. He did not engage with the environment (would not respond to people, other children or toys). Was unable to do much but sit and band his head.

Now recognizes his name

Now is able to reach out for toys and will even reach out for other boys. Will smile and laugh when engaged and has limited the head banging to when he is uncomfortable (tired, hungry, wet) Recognizes his name as he will sit up and look around when I call his name from across the room. He will make eye contact now for up to 5 seconds. THANKS to my OT friends, I have been able to teach the Brothers how to calm him down with spinning and rocking. He is starting to bear weight on his feet with help. He is not yet moving on his own but this is the next step!

6)   Ivan: Age unknown but around 10-11. He has CP and most likely some cognitive deficit (learning disability). Ivan always has a smile, even when he is ill, so it has taken a bit of familiarity to recognize when he is sick. We started out practicing kneeling and crawling. He couldn’t maintain a 4 point (on all fours) and had to scoot along on his bottom. He struggles to use both of his hands and cannot easily move his legs. Ivan’s goal is to “go to school”.

"I want to walk!" 

Ivan can now pull up to stand on his own. He can scoot along on the 4 wheeled walker; he can walk with 1 crutch and Moderate help. He can walk in my makeshift parallel bars with stand by assist and a lot of encouragement. He can now crawl in a 4 point (all 4’s position). He is now speaking his needs versus moaning or pointing.

7) Joseph: Around 8-10 yrs old. Spastic CP quad and partially blind. Non verbal initially though liked to sing. Very high energy, ADD, unable to focus and tended to bite and holler.

Likes to pretend he is blowing his nose when he sees me
as I have a constant one!

Now is learning to talk: Can say "My name is Joseph" Learning how to make the sign of the cross. Has many songs he loves to sing. Mimics everyone coming by and has an incredible memory for people and their names though struggles to pronounce words well. Now is walking with Min/Mod assist for 20 min or longer. Was unable to move on his own but can now scoot across the floor with encouragement. ALWAYS SMILING! Will melt your heart when he calls for you....is just as excited to see you when you walk in the dorm after being there all day as when you walk in first thing in the morning. Now, rarely bites (unless you don't respond to at least 10 calls of your name)

There are more kids that I see daily and many more that need attention. We can use any help that anyone wants to give…even if only a month or two! I hope that this will inspire someone to donate their expertise and training in helping these children.

I have very limited background in pediatrics but despite this, you can see that utilizing basic PT problem solving can result in HUGE changes as can be seen above!!

COME VOLUNTEER!  I CAN ASSURE YOU THAT YOU WILL NEVER REGRET IT!