Autism Research, Awakening, Cumberland Academy

Letter from Sara

Preface
4.29.2021

Today, my mom sent me a letter, written to her by Sarah on 4/2/03.

Sarah was a gift from GOD – I was asked to meet her in the late spring of 1988 when she was just 4 years 9 months old, weighing 22 pounds and wearing size 2T clothing. Sarah had a court-appointed ‘Guardian ad Litem’ who had asked a well-established ‘Therapeutic Foster Care’ agency for assistance in locating a placement.

8 years earlier, in the summer of 1980, I was due to give birth to my second child. I already had a son aged 14 months, a natural birth weighing 10.6 pounds. This second birth was not so easy: after 24 hours of labor, the baby still had not dropped into the birth canal and was in distress and the Ob-Gyn advised an emergency C-section.

At that moment, I prayed. In my prayer I begged for the safe arrival of my unborn child and promised that if I was ever asked to provide a home for a child, it would be given a home & love. My daughter was born at 8.6 pounds with a perfect APGAR score.

When I met Sarah, she was in the arms of a very distressed looking Emergency Shelter residential parent. Sarah was writhing & wiggling, squirming & poking. The woman set her down and within seconds the dishwasher was making loud sounds, as Sarah had already slid past the 4 adults which included the specialist foster care service director. Sarah went straight to the area where a group of older juveniles were controlling the television, space and their vantage points. Immediately, these much older children and young teens became threatening towards Sarah as her intrusion appeared to be both familiar and unwelcome. The attempt to catch Sarah and prevent a physical altercation appeared to have been exactly the reaction anticipated by Sarah.

I held out my hand and asked her:- “Would you like to go outside?” Sarah headed towards the door and off we went. Sarah patted the area of a car hood where an ornament advertising the brand was within reach. She did not speak. I explained: “I cant lift you up to sit on the car, its hot and would burn your bottom”. Her wide-legged skirt offered little protection. Sarah headed down the hill to the swing-set. Towards communicating and establishing trust, I pushed her on the swing by placing my palms against her shoe soles. Sarah held onto the chains, threw her head back and smiled.

The next day Sarah arrived at my home for a ‘trial visit’. I had already explained, to the best of my ability, to my husband, 8 year old son and nearly 7 year old daughter what to expect when they got home from school that day. I knew nothing!

Sarah spent the week-end spinning in circles, sticking her fingers in people’s cups & glasses, snatching food from plates while taking nothing from hers. Sarah screamed, scratched and clawed the walls at bed-time. When she finally slept, she slept with her eyes open. I sat on the floor by her bed, in the room she was to share with my daughter, and so it began.

On Monday her social worker picked her up, her next visit scheduled for the following week-end. I explained, we can take her whenever they are ready  to place her with our family. That same afternoon, Sarah was brought to our home with her belongings.

A week later her social worker came for a visit. When she asked my daughter how it feels having a sister, she replied:- “be careful what you wish for, you might just get it”.

Two weeks after her placement, Sarah was taken to an Ophthalmic surgeon. He told us Sarah could see color, light and movement and little else. Her social-services-approved eye-glasses had coke-bottle-thick lenses and would not sit on her nose, but Sarah, as if aware for the first time, held onto the ear pieces with both hands and did not want to take them off except when in the bath, where Sarah was a different child, a peaceful and angelic being.  We soon ordered a pair of ultra-thin lenses with a 9.25 prescription left eye and 9.75 right eye. This remained UNCHANGED for 6 years as she was assessed and received new glasses once or twice every year. (Later, after Sara began the lutein-free diet, her eyeglass prescription REDUCED every year in both eyes by .25 to .75 degrees. Her last pair was 2.25 L and 2.75 R).

In the fall of 1988, after a summer of rote learning exercises and intense devotion towards helping Sarah meet her true potential, Sarah passed the entry assessment and entered kindergarten at the local elementary school. Within 4 weeks she was moved to the special education class.

In 1994, Sarah was finally cleared for adoption – she was 11 years old with very limited verbal communication. Sarah could read…not aloud, but it was evidenced by her actions. She often sat with pen or pencil and paper, writing: the names of classmates, the school breakfast and lunch menu from memory. In 1991 we rented ‘Home Alone’, and after watching, Sarah wrote the whole script verbatim (except that she replaced a few words with ‘bad words’.

Sarah asked to be a cheerleader (like her sister) and was accepted, attending practice with her sister right there helping her, the coach and the team. She was wobbly and could not lift or control the pompoms.

Sarah was now 10 yrs old when I started a Girl Scout troop which included many special needs children. We went camping, hiking and white water rafting. That Christmas, Sarah asked: “Sarah be play?” She wanted to be in the church Christmas play. What could possibly go wrong?…

Sarah was one of the angel choir, and the rule she agreed to accept was – do not DISRUPT the play when the characters are on the stage! Practices apparently went okay, I was told: “Sarah just rocks back-and-forth when the angel choir is singing” (apparently, Sarah was also thinking and planning).

On the day of the performance, the church was packed to standing room only, with more than 300 people in attendance. When the angels began to sing, Sarah moved ‘out-of-reach’ (center stage) and entertained the audience, lifting her white dress at the hem and raising it ‘above the knees’ and twirling her halo like a small silver juggler’s hoop, moving back to her place as the actors came on stage.

Next opportunity, the halo became ‘Star Trek’-style eye-glasses and the dress hem was raised higher as Sarah rocked (back-and-forth) grinning. My mom was filming, and YES I still have the video, burnt to CD/DVD. People in the audience-congregation were laughing (silently) and loving this ‘Best Christmas Play Ever!’

Sarah was now 11 yrs. old and cleared for adoption. It had been a difficult process, as paternity was assigned but whereabouts unknown. Custody had been moved from her mother to her grandparents as ‘loco parentis’. Sarah’s ancestry was Cherokee/Welsh. The mother was deemed unfit, but the grandparents fought the battle as Sarah’s Guardian ad Litem, state autism advocate, social worker(s), pre-school teacher, psychologist, medical history and testimony satisfied the court that Sarah was best served through adoption eligibility.

Following her adoption a few weeks later, I asked Sarah’s pediatrician if I could try a unique approach to her diet
(very similar to the adapted Ménière’s ‘carotenoids free’ diet in use 1950’s). Dr. Jarrah and her neurologist at Western Carolina Children’s Center both approved this intervention. 

He and her neurologist approved the intervention, so Sarah was started on the lutein-free, gluten-free, dairy restricted diet in 1994 during Christmas break, one year AFTER I had developed and began using this diet myself and which I still follow.

That Christmas, as the family and many extended family members watched the ‘Best Christmas Play Ever’, Sarah showed signs of emotional awareness, best described as ’embarrassment’ – this was new! Within weeks, Sarah was speaking in full sentences! But there was more. When I picked her up from school on January 5th, I found her rocking herself hard & fast between two poles set in concrete, on the sidewalk above the curb in the school ‘pick-up zone’. When she saw me, she held her chin down towards her chest, rolled her eyes up, and demanded (almost growling): ‘Want orange juice NOW!’ I asked ‘Why’? Her reply was guttural and threatening: “Can’t get crazy anymore”.

Sarah did not get orange juice, but she did get plenty of space and was allowed to binge-watch Nickelodeon. At the end of the winter term She was moved to regular 5th grade, successfully. Also that year, she won the school spelling bee and came in second in the county (She and the other remaining challenger went 36 rounds before she erred…Sarah failed to ask for the word to be used in a sentence – she spelled cruven but, the word was proven). As the evidence of her phenomenal memory and calendar manipulator skills were demonstrated so many times, I sometimes wonder if she had grown tired and purposely spelled a non-word.

Spring was in full bloom and Sarah had been on ‘Sara’s Diet’ for 4 months when she came to my room. I looked over my glasses and waited, then asked: ‘What do you want?’ Easter had passed with many television specials, family gatherings and community acknowledgements. Sarah had been reading the illustrated color Children’s Bible, borrowed from her adoptive grandparent’s very limited book shelf. She said matter-of-factly ‘I need to be baptised’ and I explained ‘Then you will need to tell the pastor…at church. Which church would you like to go to?’ Sarah didn’t say Baptist church – (where she was an ‘angel’) but answered ‘The Methodist church”. I asked ‘Which Methodist church’, she said the one across the street we ride by on the way to the post office. So, that Sunday we went to church – the whole family – as visitors. Just at the right time (call to altar) Sarah went and spoke to the pastor, as did a slightly younger boy. Both were baptised in June at an outdoor baptism held at the state park, in the lake where ‘Last of the Mohicans’ was filmed.

In the fall of 1995 Sarah was chosen by her very large cheerleading team to be ‘Homecoming Queen’ and she accepted ONE of her classmates invitation to be escorted by him (she had declined a previous offer).

Sarah joined the soccer team (all boys) and the baseball team (also all boys) – but could not be persuaded to join the girl’s softball team. For the next two years I shared Sara’s story, and provided information and consultations far and wide. In 1998 (at the age of 15) Sara was declassified after a formal assessment at the Marcus Institute in Atlanta, Georgia.


Page 1.

4/2/03

To Ena,
Today we went to the multi-cultural families house, to see their little autistic child. I got to, meet yesterday a autistic girl, at a Paneng Chinese Restaurant and her name is Zoe; and she was wearing a short sleeve light blue Jean shirt and a deep blue skirt. We went to Michelle’s house and we had lunch and they had fried chicken squares, rice, two kinds of fishes like anchovies and white fish, cooked cabbage, and a drinking soup. Now, we are on vacation in Malaysia in Kuala Lumpur and we are staying in a apartment. Also, today we have 3 consultations with the autistic child.

Even, I am having a nice time on vacation in Malaysia. For my quest we meet Amy and her autistic boy and his name is Nicholas. We got to meet Mathew and his autistic child. Get to know, I am watching the news, called ‘a war in Iraq’. Right now. I am home by myself because I fell last night and had a seizure. Yesterday, I felt tired and passed out last night. I highlighted my hair black one day. Then we are going to Not a Kinabalu and to Sarawak.

Get this information; we ate supper at the multi-cultural family house last night. And, I felt so tired and passed out.

Page 2.

Let this happen, I got to ride with Mathew yesterday before we went to Malaysia we ate breakfast at a airport (Johannesburg) and, I ordered coffee and a sausage biscuit and I rode in Him Yie’s car with nanny who wears glasses and with a baby girl name Rose. Now, I am having a rest day today. Also, I am sitting in a living room watching television and working.

Even I got to play in a swing at Edward’s yesterday. For request I saw it was raining this morning. We got up early this morning and watch the morning news. Get to know, I got to play with Michelle. Right now, I am in the kitchen. One evening we went to Angela’s house, and had a consultation about don’s diet. So, Angela got to drove us to the airport. Then I got to meet baby Denea, the boys infant baby sister.

     Get to know is, I got me a present yesterday. Also, I got to watch the news this morning. Let you know is, I got a new magazine. I also got myself dressed while ago. We are going to the mall and out to dinner and to the movies tonight because it is our free day tomorrow.

3.

Now I am home in the apartment. Also, I went to my room to have a lie down for 15 minutes. Yesterday we went to bed early last night. Even though I am watching a news on TV. From the apartment, outside, they have a swimming pool. We got to see Josephine at the restaurant the other day. Got to know is, we went to Peng’s house, and I fell asleep. Right now, I had to change my shirt, because my black pullover polo design was too little for my body.

     One morning I took a walk all of us around the shopping neighborhood area. I was making me a cup of coffee a while ago. Today I see there was heavy wind.

     Get to know is, I know that Clara looks blond to me. And, we got our free day for tomorrow. Let you know the children around the neighborhood are on Easter break. I am staying on my diet very good. Meanwhile, I am enjoying my holiday in Kuala Lumpur, Malaysia. Then I am, in the living room writing to you. Now, I am watching a TV commercial, and the language are in Chinese, English, and Malay and Indian some and Tamil.

4.

     One day I got to meet Bee Yang and she was very nice to me. Let you know I met Josephine and she is a nice mother. For seven weeks Angela is going to keep our car with her 2 boys and their names are Chris and Reuben along with an infant daughter name Baby Denea. Get to know that is, Malaysia is a very hot country and sometimes it has heavy wind. Now I am waiting for Mom and Max to come back to the room right away.

     Right now y’all have 2 plays on to do in Valdese like The Old Colony and Arsenal and the Old Lace. I was reading myself a book. For today is our off day because we get to go somewhere’s nice. Then I got to open out to dinner last night. Also I walked around the mall area.

Also I went to the grocery store last night. Right now I am watching a heavy wind blowing outside. Let you know I got to be very nice with Christina’s autistic boy.

5.

Meanwhile, I was just looking outside. Then, I was looking at the gray clouds. Now, I am watching Chinese News on Channel 7. Only one day on January the 17th, I heard y’all just had snow. I wish I was there to check and see, and I didn’t see it and now I wasn’t there to look at it. Let you know, I got me a new present, and it’s a new chain, with different colors on them, and it hooks around my glasses easily.

For a month, I left my dog at a Indian friend’s families home. Get to know, this is a multi-cultural neighborhood area. Now, I have to go for now, and I love you and please write me back as soon as possible.

Thanks and I love you.

Love your grand-daughter, Sarah

_____________________________

Parents still find our website and buy our books. I still provide consultations and am so thankful to receive updates.

Received April 27, 2021

Hi Sandra!
We’ve been on Sara’s diet for 7 months now and my son in absolutely thriving. It was a rough first 3-4 months but now he says he “feels very Petery”, like he is being the person he is meant to be. Is love to write you more details at some point but I just wanted to send you a thank you and let you know you have changed our lives. And I mean that in such a big way.
Thank you so much for your efforts in this area. You are truly our angel.
Love, chelsea
Peters mom 🙂

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