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"Becoming Aware of Our son's Autism...

Posted by autismne on October 1, 2010 at 4:00 PM


I wrote this story to bring hope to parents that are new to autism.  (See pictures at end of story to see how much he's grown up - He's now 13 years old!)

Our Story:

“Becoming Aware of Our Son’s Autism and Finding Hope for His Future”
By Marian Helmick, Published spring 2003 by ARI. (Autism Research Institute).



Davey loved his binkies and he liked our shoe strings too!


At The Cleveland Clinic Foundation, Cleveland, Ohio, on April 25, 2002 my son Davey was diagnosed with ASD/ PDD (Autism Spectrum Disorder/Pervasive Developmental Disorder) by Pediatric Neurologist "Dr. Gerald Erenberg, M.D." Davey was three and a half years old.

As a first-time parent it was hard for me to tell that Davey had autism. I knew very little about autism I had only heard of severe cases such as with head banging, rocking and other things Davey wasn't doing. I didn't believe Davey had autism until I attended a 15-hour Autism Spectrum Disorder seminar held on August 22, 23 2001 at the "Executive Caterer's at Landerhaven" Mayfield Heights, Ohio by "Barry A Prizant" Ph.D., CCC-SLP. Director, Childhood Communication Services, Cranston, Rhode Island. Adjunct Professor, enter for the Study of Human Development Brown University, Providence, Rhode Island.(www.barryprizant.com). It was two months before Davey's third birthday that I attended the seminar.

It was a long process trying to understand what was really going on with Davey throughout his first two and a half years. Back before we began interventions and nutritional alternatives his means of playing and communicating were different than typical children. You could find him playing with shoestrings, throwing our socks, sliding anything that would fit under our china cabinet, and when playing with a puzzle he preferred to slide the puzzle pieces under the tray instead of putting the puzzle together in the tray. He was not interested in playing with toys other than throwing them or flipping the cloth tags on his stuffed animals. He had no imaginative play, little social contact, no speech, little or no eye contact, didn't like being held and only babbled and did not imitate any words. He was like this until he was 2 years 11 months old.



Davey would slide anything he found that would fit under our china cabinet, he would do this often rather than playing like a normal preschooler.


Through Early Intervention and nutritional alternatives (Gluten Free/ Casein Free and the Feingold Diet) Davey has achieved much in the last nine months. He can now imitate over 125 words and is beginning to use a few words such as bye-bye or see ya, coat off, vest off, and sit down. He sings phrases of songs like "Row, Row, Row, Your Boat" and other children's songs. He's able to count to 12, say parts of the alphabet, and name farm animals and their sounds when pointing to pictures of them. Just recently I pointed to a picture of a rabbit and I said to him "bunny" and he said "rabbit." Also you can find him playing appropriately with toys, is interested in trying new ones, and likes to put puzzles together and enjoy's playing "Ring Around the Rosey". Now he's using imaginative play which is delightful for me to see, and he's beginning potty trainning. Of course, like some ASD children these abilities are on and off again at varying times and it's difficult for people who don't see him often to see these results happening as I do.

It was through the seminar, information I found on the Internet, and magazine articles that I came to believe that Davey has autism. Here is the story of how our awareness of autism came about and what we could do to help him:

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I was a first time mother at the age of 37 and had not been around newborns for a long time. Up to my third month of pregnancy I had been working for about 17 years. I had been in a variety of different occupations prior to the early 90's. In 1995 my career took direction in Graphic art/ Design. All the while I had been longing to have a child of my own, but because of my husband not being ready, our financial standing and infertility reasons it was 10 years before Davey came into our lives.

When Davey was born he was very healthy and weighed seven pounds, fourteen ounces, and twenty one and a half inches long. Davey accomplished the major milestones such as lifting his head, rolling over, sitting up, and crawling and walking. He was slightly behind on some of the milestones but always caught up within a month or so.

Throughout his infancy it was difficult to connect with him because he seemed to prefer being in his baby swing or vibrating infant seat rather than being held. At first I didn't know why he was fussy when we held him. After a few weeks I figured it was because he prefered movement rather than being still. I remember times when he was a newborn when my husband would march around with him and sing funny tunes this calmed him. I started dancing with him in my arms and played soft music to be able to hold him for awhile. We learned that just rocking him in a rocking chair or glider wasn't enough movement for him other than feeding times. Right after feedings he wanted movement again.

Though I found ways of appeasing him, Davey was irritable quite often through most of his infancy. Every two hours before feeding, it was as if he was facing starvation and his crying was loud, demanding, and nearly pierced my eardrums and fried my nerves. (He had very high decibels.) Even though I pre-made his bottles ahead of time and it only took a few minutes to warm them, it seemed as if I was not fast enough for him. As soon as I gave him his bottle he litterally gulped it down. By the time he was 3 months he was drinking 9 to 12 ounces each feeding with a tablespoon of infant cereal mixed in.

Looking back now, I wonder if he had food intolerances to his formula. From all his fussieness and loud crying by the time he was four months my nerves were shot and I decided to use industrial strength earplugs. (I still heard him through the earplugs but at least I kept my nerves intact.)

Often when we changed his diapers he would scream like he was in intense pain. This was bewildering to us. He did not have skin conditions that we could see and dressing and bathing rarely bothered him. We tried using a diaper wipe warmer and we handled him as gently as possible each time we changed him and this helped some.

I noticed his most irritable times were close to his naptime. He couldn't fall asleep just being in a still position. To get him to nap I created a house sled by making it with an infant carrier (Century "Kanga-Rock-A-Roo" ®;). The carrier had two ruts on the bottom that were about an inch wide and curved along the back of the infant seat. I put a small amount of furniture wax on the bottom part of the ruts to aid in a smooth ride. I then put a nylon rope at the two sides of the top of the carrier handle to pull it. The handle was turned to the top of the carrier and when Davey was placed in the carrier he was in a comfortable reclined position. Every time I used the sled I put soft music on and pulled Davey through out our first floor living room, kitchen, hallway and bedroom. He enjoyed the ride and would fall asleep within 15 minutes. Sometimes he fell asleep within a minute. On occasions when he wouldn't fall asleep I would take him for a ride in our van and he would fall asleep then. This way I had him on a routine schedule for his naps.

There were times when he was not consolable even after trying the sled, the van, or the baby swing. All I could do was to put him in his crib and allow him to cry. I remember occasions when there had been extra stress in my life and I would end up crying out my frustration and pain. This is when I felt like I was failing at motherhood and at times I wondered if I wasn't meant to be a mother.

One time, when my brother-in-law and his wife came to visit us. Davey was becoming irritable and that led to a discussion about it. My brother-in-law suggested that we have him examined for colic because his youngest son had often been irritable as an infant and he had been diagnosed with colic.

When I took him for his routine check-up I asked our pediatrician to examine Davey for colic. After she examined him and asked questions she said that he did not have indications of colic. She mentioned that he might have excessive gas and that would cause a lot of discomfort. She explained how to look for signs of gas and recommended an over the counter treatment called "Little Tummies". On occasions when I thought he had gas I looked for signs as directed by my physician and used the medicine and it did help. That helped ease some of his irritableness. During all of his infant check-ups she kept a general assessment of his development and there wasn't an indication that anything was wrong at the time.

Through Davey's infancy I didn't feel close to him - even though I loved him I couldn't feel those wonderful nurturing feelings I had when I held other babies. I felt numb and disappointed and didn't know what I could do to about it . When Davey was four monthhs old I knew I needed some support so I decided to get counseling. I went to "Womankind Maternal and Prenatal Care Center," A non profit agency in Garfield Heights, Ohio. I had been there for previous counseling. While in counseling, I was recommended to "Early Start" a program for children from birth to three years old. This sounded like a good idea and would be helpful to both Davey and me. That week I called and signed up for the home-based visits. I decided to continue with counseling at "Womankind" until I felt better.

The Early Start Coordinator came and assessed Davey's development by using a developmental checklist. She also observed and interacted with him. A few weeks after the assessment a home visitor came and began seeing us on a weekly basis. Every three months we reviewed his developmental progress by an assessment checklist until he was 12 months. This is how we found out that he was behind on some minor developments but then he would catch up within a month or so.

By the time he was between 7 and 8 months he was becoming mellow, pleasant and happier. (Our pediatrician said he should be like this now.) It was a pleasant time and I was thankful for this period!

Davey began his language around 13 months with da da and did not progress much. By the time he was 16 months we were growing concerned with his language delay and his play skills. He wasn't responding to us when we called him.

When my mother-in-law, sister-in-law and other family members were visiting my sister-in-law mentioned that she was concerned about his hearing because she thought he didn't respond to sounds around him. I never noticed a problem with hearing in Davey. I knew he wouldn't respond to us calling him, but I thought it was because he was always so preoccupied and busy doing things.

While at his next check-up I mentioned that our family members were concerned about his hearing. Our pediatrician then wrote an order for a hearing test. I took Davey for a hearing test at "Rainbow Babies and Children's" Hospital, Cleveland, Ohio. During the hearing test Davey would not cooperate. He wanted to do his own thing and had tantrums when we tried to get him to sit and listen for the sounds. After trying several times and using different methods. The test was inconclusive. There wasn't enough information to accurately indicate his hearing ability. Our pediatrician recommended the next step would be to get an ABR test (Auditory Brain Stimulation.) This is a hearing test that can accurately record brain response to sound stimulations through the ears while sedated. My husband and I took him to the Cleveland Clinic for his ABR test. The test was simple and took less than twenty minutes. A few weeks later we received a report in the mail that indicated normal hearing in both ears.

For awhile I had been trying to figure out what I could do to help Davey with his play skills. I decided to join a weekly playgroup that a friend of mine had organized. I thought it would help him to be around other children. Once a week we rotated homes of each playgroup mom. Getting started in the playgroup was a struggle. I had to stay with Davey the whole time for the first month, because he was quite fussy and irritable and it was frustrating for both of us. The second month he was less irritable. As time went on he gradually became comfortable and I felt better allowing him to be on his own. He mostly played by himself.

I talked with my friend about what she was seeing in Davey and she said she didn't see a problem only that he was fussy and It seemed that he just had a different personality than the other children.  

Between 16-18 months Davey became more irritable again and began to throw tantrums. I wanted to know if it was due to his temperament. I went to our library and looked up books and articles on infant and child temperaments. I found a few books on child temperaments and found Davey's temperament listed in the book This information was reassuring to me that some children have difficult temperaments. The book suggested that a child with a difficult temperament would benefit from being kept on a strict routine throughout the day and informing the child ahead of time when transitions will occur. Back then this was difficult for me to keep him on a strict schedule other than his waking, napping, feeding times, and planned trips.

When Davey was about 18 months my sister-in-law suggested that we have him checked for autism. She had been talking to a neighbor of hers that had a teenage son with autism and thought this was a possibility. It was a struggle for me to relate to her about it, the idea of autism frightened me and I wanted to believe it was only a temperament issue and developmental delays. Also, in a sense, I felt that I was protecting my son from autism by avoiding the issue.

I decided to call around to find anything I could to help Davey with his developmental delays. I started in the local yellow pages and went from one agency to another. I can't remember the details but I remember making a lot of phone calls and it was like I was going in circles for awhile. Somehow I found Interlink ("Help Me Grow" www.helpmegrow.org) and they recommended "Early Intervention." This is a program to help children catch up on developmental delays. This was in August, 2000.


I decided to try "Early Intervention." At the time we knew that Davey had a speech delay. A coordinator was sent to our home and assessed Davey. She had a checklist assessment and observation and behavior list.  

After the assessments were done she said he was behind on a lot of play skills. A few of the things he was behind on were stacking blocks and stringing beads. He didn't have an interest in stacking blocks or stringing beads. and I didn't know how important those things would be. He mostly enjoyed running, jumping, romping, throwing and basically acting like a toddler boy.


Davey loved to line things up and he loved vacuum cleaners.  He was often moving our vacuums around!  I was surprised to learn that autisic children like to line things up.


A few weeks after the assessment our first Early Intervention specialist came. She was very kind and helpful to us and had worked with autistic children. After a few visits I asked her if she thought he had autism. She couldn't tell me if he had autism and recommended that we see a Pediatric Neurologist. Davey was about 21 months at the time.


Before going to the Pediatric Neurologist I started to look at the possibility of Davey having autism. I wanted to know everything I could about it.

I began by searching the Internet for information. I started with a search engine and typed in Autism. One site among others was the website for the "Autism Society of America." I went to that site and read the home page. At the time, there were some descriptions of autism that I thought didn't really fit Davey, among the descriptions were walking on toes, arm flapping, rocking, banging head, no eye contact and repetitive play. Davey wasn't behaving in that manner. I thought Davey's repetitive play was appropriate for his age of 22 months.

When we took Davey to the pediatric neurologist I explained everything Davey was able to do and what I knew about autism. I explained to him that Davey was able to do many things. Now he was stacking blocks up to 11 at a time and attending to the stack. He had good motor skills and seemed to me like a typical toddler boy. Also by this time he didn't mind being held for short periods and had some eye contact. The Neurologist examined and observed Davey. He said his behavior and the way he was playing was appropriate for his age. He said he didn't see autism in him at this time, but he acknowledged his speech delay.




Davey didn't respond to my affections.  The most painful part of it was that

 it seemed he didn't know who I was to him.


In February of 2001, our Early Intervention Specialist, told me about a Parent/ Toddler playgroup that was organized for children with autism. She said this would be helpful for Davey even without a diagnosis. I signed us up for the playgroup and we met Fridays at the pre-school where it was being held. At that time, as part of the playgroup therapy we were introduced to what is called the "Miller Method". This is a therapeutic way of helping children with socialization, motor planning and following directions. We also attended the pre-school on Mondays for Parent/ Tot "Movement and Music" class and swimming. In addition we had a speech and occupational therapist visit our home for an hour twice a month from the school.

In early spring of 2001 my Early Intervention specialist recommended a "Floor Time" Seminar to help me to interact with Davey and expand his play skills. It had been very difficult for me to sit and play with him. He would never really play with one thing and would often prefer to just run around the room. I could not get him interested in playing with any toys and it was very frustrating for me.



(At Christmas I had to hold him and open his gifts for him.

All he really wanted to do was run around the room.)

The day I went for the "Floor-Time" class I was sitting in the waiting room. While I was waiting I noticed an article called "We cured our Son from Autism" by Karen Seroussi. This article explained that a Gluten and Casein free diet helped her son dramatically. (Gluten is a protein found in Wheat, Oats, Barley, and Rye. Casein is a protein found in milk and dairy products.)

I decided to try the diet that Karyn Seroussi had written about just to see if it would help him. I re-read the her article and began my research about the diet to make sure this was the right direction for us. After reading her article I read her book "Unraveling the Mysteries of Autism" and read "Special Diets for Special Kids" by Lisa Lewis, Ph.D.

I also checked on the Internet for more information on Gluten and Casein free diets. I went to the ANDI (Autism Network for Dietary Intervention) www.autismndi.com web site that had been mentioned at the end of Karyn Seroussi's article. At the ANDI website I found a section for parent support for the diet (PASS). This is a section of parents who are willing to volunteer their time corresponding by e-mail with parents seeking to learn more about the diet. On this section I found two mothers that I kept in touch with by E-mail for a short time. They were very helpful in sharing information with me about the diet and how they were doing with it. They also mentioned "Kirkman Laboratories, Inc." This is a company that formulates nutritional supplements for Autism and related conditions.

After all my research I consulted with our pediatrician about the diet. Although she was hesitant about this diet She wrote up an order for a blood test and she suggested that I consult a registered dietitian. I talked it over with a dietitian and she requested that I make a 3-day list of his meals to make sure that he would be getting enough nutrition with this diet.

I started Davey on the diet in the middle of July 2001. I decided to go into it carefully replacing one item at a time. He liked flake cereals and breads so I started with a Gluten/ Casein free flake cereal and he liked it right away. One week at a time I replaced bread, macaroni and other Gluten products. Now he eats a variety of organic foods such as scrambled eggs, chicken nuggets that I make with only rice flour. Lean ground beef in rice spegetti & pasta, vegetables such as peas, green beans, carrots, and fruits such as pears, pineapples, and bananas. He even eats a very small salad with the dark green leave's. I continue to add more variety and try other foods as carefully as I have always. At times I have found foods that cause problems with his digestion so I discontinued those foods for now. I am glad I replaced the items slowly over a month and a half because he adapted to the diet real well and it was not a tremendous struggle for the change over. This diet has been worth the effort to us for a lot of reasons including that he is eating a much healthier selection of foods than before.

Sometime after starting the Gluten/ Casein free diet I was shopping at "Wild Oats" where I had been finding Gluten/ Casein free foods. I found a computer with dietary information on it. (Healthnotes Online). I printed out a lot of information on Gluten free foods and also information on fruits and vegetables. While I was looking at the information on fruits I found a section on the "Feingold diet" "Feingold Association of the United States" (703) 768-3287 www.feingold.org and www.ADHDdiet.com. From what I understood about this diet, avoiding foods containing salicylates and certain preservatives could reduce ADHD in autistic children. I used this method along with the Gluten/ Casein Free diet and I really believe it has helped Davey to be able to pay attention to tasks such as finishing puzzles and being able to interact with adults.

In August 2001 I attended a 2-day seminar for understanding and supporting children with ASD. This seminar presented by "Barry A. Prizant, PhD., CCC-SLP provided information about social communication, emotional regulation; supporting and assisting with emotional well being, transactional support; assessments and interventions, educational; family, friends and peer support. With this information, I was provided a much clearer view of Davey's disposition There were about 6 video clips of children with ASD and the children's character's were like Davey's. After the seminar I was 99 percent convinced that Davey had autism.  

After having him on the diet for one and a half months I decided to try Nu-Thera the multi-vitamin supplement for autism that was mentioned by the two mothers from the ANDI parent support website. I went to the Kirkman Lab website (www.kirkmanlabs.com) and read about the product and the benefits. The information was very interesting and looked as if it would be helpful to Davey. I ordered the trial size of Nu-Thera. Beginning September, I started him on the multi-vitamin.

On September 19, we witnessed the beginning of results from the diet and multi-vitamin supplement. Davey started repeating alphabet letters that he was seeing on the TV show 'Sesame Street.' He had never imitated language before. I ran and got the video camera and was able to video tape him saying the alphabet letters! My husband and I were so proud.

In September 2001 we started Davey in a 4-1/2 day toddler program that is similar to pre-school. Davey's toddler teacher had known him from the previous year when we attended her parent/ toddler group. After the first week in school I asked her if she noticed any difference in Davey and she said "yes I see a big change in Davey." She mentioned that he was far less irritable, easier to work with and he's starting to imitating words. She asked if this was a result of the diet and I said I believe it is.

In October I started him on a trial of Enzyme-Complete with DPP-IV. from Kirkman Lab, this is an all natural dietary enzyme to aid in digesting and breaking down proteins, sugars, and carbohydrates. The enzymes have been helpful with digestion and firming his stools.

In March of 2002 I was at our public library looking for children's videos. There I found vocabulary building videos for infants and toddlers by "Baby Bumblebee." www.babybumble.com I was excited about this find and couldn't wait to view them with Davey. He enjoyed the videos and would view them three to four times a day. The first week he began repeating many of the 25 words on the video. A week later I went back to the library and found four more videos from the five that the library carried. Week by week I played them for him and eventually he was able to imitate up to approximately 125 of the words on the videos. Now he's labeling things such as ball, cup, bowl, hat, dog, cat, bicycle, and say's the names of farm animals and the sounds they make.  

Davey has achieved much over the last nine months. While in pre-school Davey learned to use a fork, spoon and a regular cup. He also started potty training. He learned to paint, use writing utensils, paste and use scissors and brought many art projects home. They also had circle time for socialization and there he learned amoung other songs: "Ring around the Rosey". At home, I remember the first time he pulled my husband and me into our living room and took my hand and put it into my husbands hand. Then he jumped for joy and we said "what do you want to do." After hesitating he grabbed our hands and made a circle (We just stood and waited untiil he said "ring around the rosey" (only not so clear and not so direct, but we got the idea). We were delighted over his new game with us. I'm thankful to his teacher and her assistants for helping him to achieve these things.  

Davey has more to achieve to catch up to the level of typical children, but we are so thankful for all of his achievements in the last nine months. For me, the most rewarding of his development is the relationship and connection I now have with him. I feel close to him and it's easy to tell that he enjoys being with me and the same with his Dad. One special moment I'll always remember is the time when his Dad did something funny and Davey's and my eyes met and we laughed together. It also pleases me that Davey is also connecting with his grandmother and some of my friends as well. He has eye contact with them and also participates in some playing with them.

I recently wrote a friend and included some feelings about my son. I thought the paragraph was so beautiful that I would like to share it with you:

{I'ts funny a year ago I wished I could have a second child, but this year I wouldn't want my relationship to change with Davey. Now I know he is the one that was meant for me all along. He makes me laugh, and tickles my heart with the cute things he does. I can't believe how wonderful our relationship is and I love it so much. I pray it never ceases or goes cold or distant. I thank God for him.

Sometimes the work involved is very hard and can be confusing for me when his behavior changes, I learn new things about his intolerances. But altogether when things are well; the smiles, laughing, good eye contact the personal relationship and hugs are all worth the effort that I've put into his care.}


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update:


Davey is now 12 years old and things are so wonderful for us.  He looks forward to his birthday, Christmas and all the holidays with excitement.  (In the beginning, he was oblivious to it all.)  He likes going to school and is doing well at our local school district.  - We're thankful for that.



Davey at school - 2009




I think the best thing about it all is our relationship;

he knows who I am and the wonderful affections between us



Davey has been in the school band for 3 years now and plays the trombone. I am proud!


Davey Dressed up for his band concert!


~~~ ~~~ ~~~

(This story was submitted and published in 2003 by the Autism Research Institute (ARI) “Treating Autism” 31 parent stories of Success and Hope and updated in the book Recovering Autistic Children 2006.)

Story posted on AutismNE (Northeast Ohio Parent/ Family support for Autism.)

http://autismne.webs.com/apps/blog/show/4928610-becoming-aware-of-our-son-s-autism-


AutismNE Home page:  http://www.autismne.webs.com


If you have a loved one with autism or if you think your child might have autism:  Join our Family Support for Autism:  Northeast Ohio.  http://groups.yahoo.com/group/AutismNE


See also:


ASGC (Autism Society of Greater Cleveland)

http://www.asgc.org


Autism Support Network:

http://www.autismsupportnetwork.com


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