A Special Story

 

A Child’s Courage Against Adversity

photo1-271x300Parenting is rarely easy, especially for a single working mother with a child who has special needs and can barely express himself. Jenny’s eight-year-old son Jacob has Down syndrome. Caring for him left her “physically and emotionally exhausted, frustrated and desperate.” But for Jacob, unable to speak and being seen as very different and perceived to be very limited in understanding or feeling, life was even harder. For both mother and son, life had become painful and unbearable, with Jenny at her breaking point and Jacob increasingly acting out his frustrations and unhappiness.

My goal was to help Jenny in support of Jacob’s mental, physical and emotional well-being. Between October 2013 and April 2014, Jenny and Jacob had an average of four sessions a month. With Jenny on the phone and myself connected to Jacob telepathically, he finally had a way to communicate his feelings, explain his problems and ask questions. For Jenny, it meant she could have conversations with her son and get to know and understand him on a much deeper level. It also allowed her to create the necessary circumstances to help him flourish and transform desperation into joy and hope. May their story inspire you.

Please note that on January 1, 2014, Jacob was started on a natural supplement called Laminine, known to help children and adults with a variety of cognitive challenges. There’s little doubt that Jacob benefited from it.

Before each session Jenny sent me an email updating me on Jacob’s progress, challenges or new problems. In excerpts compiled from a multitude of emails, Jenny describes their life in the months leading to September 2013:

“I’m having a very difficult time with my 8 year old son Jacob who is diagnosed with Down Syndrome and mental retardation. He is in his own world most of the time and I don’t know how to enter it or get him out of it. He has never been able to speak and we can’t relate to each other. The only communication we have is “Are you hungry or thirsty?” and “Do you have to go potty?” His behavior in the past few months is so out of control and I know he’s unhappy but I’m exhausted and don’t know what he needs. Being his only parent with little family close by makes life harder.

“At home, Jacob makes moaning noises for hours on end, does stimming* behaviors such as spin in circles or swing his head left to right in a sweeping motion. He likes to slam doors or lock them, often locking me out. He tries to wander off but luckily so far I’ve caught him before he reaches the street. He seems to think its funny but it’s a safety concern so I use extra locks everywhere. Unless the water supply is turned off, he often enjoys flooding the bathroom. He urinates on the floor of the restroom despite my attempts to teach him otherwise. When he doesn’t want to do something, he drops to the ground refusing to budge.

“We’ve not been able to go out in public in a very long time because it typically results in a meltdown or he’ll randomly sit in parking lots or in stores refusing to move. So I try to take his hand to help him up but instead he rolls around on the floor and yells. Jacob weighs 65 lbs. and is outgrowing his push chair. I weigh 105 lbs. and can no longer carry him. I can’t take him to restaurants because he tosses things around, tries to run to the kitchen or disturbs people by tapping them and playing with their hair. Because of similar behaviors, I can’t take him to stores, the zoo, museums and all the places that children enjoy. I’m even afraid of taking him to the park for fear that he’ll run away.

“A good morning is when Jacob happily walks to the school bus but so often he doesn’t want to go and sits on the ground. I have to pull him up by the restraint jacket he has to wear on the bus, and literally drag him down the sidewalk, get him on the bus and into his seat, with him screaming angrily the entire time. It’s exhausting.

“At school, Jacob will exit the restroom without his clothes on or run out of the classroom for his teacher to chase him. He disturbs the other kids and sometimes hits them. Unless he gets one-on-one attention from his teacher he seems unhappy, is inattentive and fiddles with his hands and feet for long periods of time.

“Jacob is taken to daycare after school. We’ve been kicked out of two daycares because he would repeatedly run out the door and keep running away until caught. Picking him up from daycare is a challenge that I dread daily. He doesn’t seem happy to see me or doesn’t want to leave the other kids so I have to lure him with candy. Sometimes that doesn’t work and two people have to carry him out to my car. It’s confusing and embarrassing beyond belief.”

In the first few sessions Jacob was encouraged to talk about anything he wanted or needed. His revelations were very sad and explained the suffering he had endured in silence.

photo2-770x1024 Jacob said that he hated himself because he knew he wasn’t normal like other kids. He was deeply hurt and even angry knowing that strangers viewed him as weird. He was angry at life because it was so hard and he believed that his abnormality doomed him to a miserable life. He felt very guilty believing that his mother was struggling and remained single because of him. He was convinced that he didn’t have a father because of his abnormality and asked deep questions that had troubled him for many months. He asked about his grandmother whom he adores but doesn’t get to visit except on major holidays.

Jenny later wrote me: “I’ve learned that Jacob has a voice and has a lot to say. He is a lot more aware than I ever imagined. He feels emotions deeply and has a higher intelligence than his body is willing to allow him to display.” In conversation, Jenny told me that she felt “awful” and “so bad” not knowing how broad and deep Jacob’s pain had been for so long.

Mother and son needed help dealing their emotional pain and guidance to start anew.

I encouraged Jenny to stop blaming herself for what she couldn’t have known and to stop referring to Jacob as ‘retarded’ but instead, think of him as challenged or simply different. After all, we had already witnessed Jacob’s integrity as a sentient and intelligent boy whose potential was yet untapped due to a lack in communication skills.

Jacob was dealing with grief, guilt, abandonment, rejection, anger and hopelessness. I knew that the optimum situation would have been to involve a psychotherapist but that wasn’t meant to be. So Jenny and I approached every one of Jacob’s pains gently and lovingly, beginning with the absence of his father. Jenny explained that for reasons unknown, the biological father disappeared in the early stages of her pregnancy and long before any knowledge of Down Syndrome. Jacob found it hard to understand but at least he got some comfort in hearing that it wasn’t his fault and had nothing to do with his condition.

The pain statement “I’m not normal” came up often in the first three months. Jacob compared himself to the seemingly healthy and happy kids he had seen in public and on TV, kids with two parents who get to do or have whatever they want. We gave him a version closer to reality; that all children have their share of problems, many don’t have two parents while some have none, and that most don’t get whatever they want while others don’t have basic needs met. We directed his focus to what matters most to everyone: love and happiness. In doing so, we convinced Jacob that Down Syndrome need not stand in the way of his happiness. To his amusement, I shared that like him, many people see me as weird or crazy because of what I do and yet I feel more love and happiness than most people I know! Jenny and I convinced Jacob that being normal isn’t a prerequisite to happiness and that with combined effort to change, both of them had potential for happiness. We also talked about God, prayer, courage, hope and effort. Jacob listened, engaged and allowed himself to be inspired. It wasn’t long before his courage and determination inspired me.

In every session, I started by asking Jacob how he felt physically and emotionally as well as what he needed or wanted. He often felt lacking in energy in the mornings; that soon subsided. He said he was frustrated by his eye glasses and needed new ones; he was later seen by an Optometrist and got a new prescription. He complained of not hearing as well out of the right ear but the doctor found nothing wrong. He sometimes complained of feeling uncomfortably constipated and Jenny addressed that with a supplement. He said he had a loose tooth and wanted to wait for it to fall off. By the time his dental check up arrived he had proudly taken care of it and wanted the dentist to know.

photo3-150x150On a more light-hearted note and for his forthcoming birthday on October 30th, Jacob asked for a chocolate cake with real strawberries covered in whipped cream. He asked to decorate it himself and did, using Cheerios, M&Ms and jelly beans. He was so happy with his achievement that he asked to send pieces of cake to everyone he cared about! He also asked to go trick-or-treating on Halloween. Jenny hadn’t allowed it in the past out of concern for his well-being and safety so Jacob reassured her that he knew it was make-believe dress up and that he wouldn’t be frightened. They went trick-or-treating and had a blast!

By mid-November, Jacob felt much better overall and showed signs of courage and readiness for change. With his collaboration, we set goals, and introduced an easy incentive and reward system as well as other tools to help in daily life. Both Jenny and Jacob applied themselves to learning sign language and Jacob is learning how to spell words using a Kindle application as well as magnetic letters.

Before Christmas, I facilitated the first-ever conversation between Jacob and his grandmother. It was simply extraordinary! He was uplifted by the fact that his Nana was hearing the true Jacob for the first time and with many “I love you Nana”, he enthusiastically asked her questions, talked about her dogs, shared the happy experiences he was having and proudly talked about his progress.

photo4-150x150Also in December, Jacob’s school teacher joined us in a session with Jacob to discuss his needs and behavior. Jacob was able to talk about everything that caused him stress as well as his hopes for better learning. He needed more use of the computer; it was granted as a reward for good behavior. He asked her to give him homework especially to practice writing; she did and he applied himself seriously to doing it well. I asked her if she could apply an incentive/reward system similar to the one Jenny had created and she gladly obliged.

Jacob felt very encouraged and optimistic and had a wonderful Christmas.

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January 2014, Jacob’s self esteem was improving by the day. He reported feeling much better, being more in touch with his body and expressed having stronger mental clarity. Emotionally he began to blossom and felt courageous and eager to learn. It was as though he was on a mission to succeed and he cared about making his mother feel proud. At home he bonded more with Jenny and in a session, he asked that she allow him to help with house chores. As a result he helps with laundry and keeps his bedroom tidy, often without prompting. He began to take better care of himself, brushing his teeth, trying to dress and undress himself and cleaning the floor around the toilet when he accidentally misses. By his own volition, every evening after supper Jacob studies sign language videos. Sometimes before bedtime, he looks attentively at a book trying to decipher words.

On February 1st Jenny writes:

“The most significant event happened last night. He was sitting in the living room playing with his magnetic foam letters. I told him it was time to go to sleep and went into his room to turn on his night light. When I came back, he was fishing around in his tub of letters. I went to him to see what he was doing. He had placed some letters on the arm of the chair. S (space) E E P. I knew he was looking for the letter L and realized he didn’t have an L in his bucket. So while he continued to dig, I went to his room and got another bucket out and found an L and took it to him. He scooped up the sleep letters in one hand and his bucket of letters in the other and went to his room. He carefully formed the word sleep on his magnetic board. That is the first time he’s heard me say a word in normal conversation and decided to spell it!

photo6-169x300“We’ve been able to go to the zoo, run errands together without problems and go to the movies where he asks for popcorn in sign language. We can go out together and have a good time! He happily comes home with me from daycare and without any candy incentive. We can relate to each other in small ways too. For instance, he will look up at me and smile when we are walking to my car from the daycare. He will instigate games with me, like me chasing and tickling him. We’ll put puzzles together and if he gets frustrated trying to put a piece together, he’ll ask for help in sign language. I have a lot more patience with him now because thanks to the telepathy, I know what he’s thinking or why he’s behaving a certain way.”

Having gotten to know Jenny, I can honestly state that the humble exclamation marks in her emails are symbolic of her deeply felt joy and gratitude.

“Another milestone this week was taking him to the grocery store with me. He behaved well although was excited to grab one of everything off the shelf and add it to our cart. I would follow behind him and put most of the items back. We got everything on our list and didn’t have to leave the store early due to his being out of control like in the past. He was eager to help me bag produce and help push our buggy. We didn’t take his push chair, he walked with me!”

photo7-150x150Even with significant progress one can accept moments of regression, which happened the very next day. Jenny called me to ask me to talk to Jacob and find out why he had had a meltdown in his bedroom. He had thrown his toys, bedding and mattress all over the room, clearly upset about something. Jacob explained sadly that he desperately wanted to spell “I love you” with his magnetic board and give it to his mom. Unable to do so got him frustrated with himself to the point of losing control. She immediately comforted him and later wrote: I showed him how to spell “I love you” and he clapped his hands and was happy. Who could have known that a messy room was a result of wanting to say I Love You and not knowing how? In the past I would have been angry with him for messing up his room; what a different outcome thanks to the telepathy!”

By early February, Jacob was more conscious of his body and complained about feeling overweight and inactive. He asked for exercise, requesting that he and Jenny take a walk every evening. With a telepathic image of himself flexing his muscles, Jacob told me he wanted to get strong not only to feel good but also to protect his mother as he grew up. Having watched his mother exercise with dumbbells, he asked that she teach him to use his. He also asked to learn to ride a two-wheel bicycle and swim, so he’ll be taking swimming lessons at the YMCA this summer. Jacob was beginning to own his body which for him was life changing. On February 20th Jenny writes: “We’ve been going for a walk every night since the 15th, between half a mile and a mile. The minute I ask him if he wants to walk, he excitedly puts on his shoes on his own and is ready to go! He’s very loving and happy and gives me lots of hugs on our walks.”

Jacob continued to improve daily, asking for what he wants and accepting no for an answer, responding to questions and quickly listening to her directions about what he needed to do such as brush his teeth or go to bed. He was definitely happier, more connected and appreciative of life. Sometimes spontaneously, he began to say ‘please’, ‘thank you’ and ‘I’m sorry’ in sign language that Jenny had recently taught him. She writes:“He’s like a totally different person and I’m amazed at the progress he’s made.”

February 26:

“He asked to watch Signing Time. I said he had to take a bath first, then he could watch his video. He went right to the bathroom and got undressed! Later, when the dvd finished, he signed ‘more.’ I told him it was time for bed. I said let’s brush your teeth and then we’ll read some books. He immediately said yes, without delay. There was no slow processing time all evening. So he brushed his teeth and we read a book about a puppy and kitten playing hide and seek. As I was reading about where the puppy was hiding, he pointed to it! That’s a first! I’ve been trying to get him to do that for years, but he’s never responded before! Then I started asking where the puppy and kitty were and he’d point right to them! We read some more books and he would flip the pages. Sometimes he would turn them too soon, so I’d say I wasn’t finished and immediately he’d turn the page back! The lack of time it took for him to process the information and act on it really surprised me!”

February 28th, Jenny writes about her conversation with Jacob’s school teacher Sandra:

“She said that Jacob has been paying a lot better attention and participates more. He hasn’t been playing with his hands and feet like he used to. He’s a lot more compliant too and he’s been going in the potty, rarely missing anymore! If he misbehaves she’ll walk up to him and tell him he needs to do so and so and he’ll take her hand and do what she says! In the morning, he loves doing the calendar, days of the week, weather, and letters. It’s a morning routine they do. On Wednesday of this week, it was time to do letters and he pointed to each letter with his left hand, signed the letter with his right hand, saying the letter out loud, and then making the sound of the letter! He did that for each letter of the alphabet! Sandra said the whole class watched him in silence and she almost cried! Everyone was in awe!”

Follow ups and positive reinforcements continued in the month of March and Jacob felt better than ever, continued to improve impressing me and amazing Jenny.

“This morning I got out his pants for him to change into for school. I laid them down on the chair, meaning to tell him to put them on as the time got closer for the bus to arrive. But he beat me to the punch! Without being told, he took off his pajama pants and put them in his dirty clothes hamper and then put his pants on! He had to be told to put on his shirt, socks and shoes, but I was amazed that he put on his pants without being asked to.

“I keep his closet locked most of the time so he won’t drag every toy out at one time and spread them all over the floor and I keep the keys on the hanger by the door. He took the keys, unlocked his closet, took out one set of toys (about 30 plastic figure characters) and played with them for a while. Later, I was washing dishes and saw him put the keys back and return to his room. I thought, “you’ve got to be kidding me. Is he cleaning his room too?” I peeked in and sure enough, for the first time ever without being told, he picked up every figurine off the floor and put them back into his closet! That is the one set of toys he’s never cleaned up in his own. Then he closed the closet door and picked up all the foam letters he had also been playing with. I didn’t even ask him to clean up! It was amazing!”

In a recent session Jacob asked: “Do normal kids care about their mom as much as me? … Do they work like I do?” He added with passion: “I’m not going to stop working hard until I can speak in sign and in words.”

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We love you Jacob!

How much of Jacob’s progress can be attributed to the telepathic conversations or the supplement Laminine** is unknown. What is certain is that you wouldn’t have read this story had it not been for Jenny’s devotion to Jacob, the love they share with one another and the courage to persevere that they have in common. For all those reasons and more, they have my love, respect and admiration. But they need help. For example, Jacob needs a home computer with learning software or applications, interactive toys and one-on-one speech and language therapy. Please email me if you have any suggestions or if you feel inspired to help.

*Stimming behaviors are self stimulatory repetitive physical movements or sounds common in individuals with developmental disabilities especially autism. Therapists view this behavior as a sensory processing disorder and a protective response to being overly sensitive to stimuli. Jacob’s stimming behaviors included moaning sounds, spinning in circles, swinging his head left and right in sweeping motion as well as fiddling with his hands and feet. Asked what affect these movements had on him, he explained that they comforted him and helped him feel more connected to his body. In March, Jenny reported that Jacob’s stimming behaviors had subsided by roughly 80%.

**Laminine provides the most essential proteins and amino acids our body needs, along with the proper transport mechanisms to direct these nutritional building blocks to where our body needs it the most.

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