How Parents Can Use Maximum Potential’s ABA Training Program

By Garrett Butch/Founder of Maximum Potential

 

I have been asked over the years by various parents and professionals how I came up with MP and how we use it. I never put it in writing until I was asked a few days ago to do so.

Here is the background. Collin our son who is now 9 was diagnosed at the age of 22 months. We knew something was wrong with him at roughly 15 months. We began the labor intensive process of testing Collin at 18 months. We had no idea what we had in store for us and I am glad that we didn’t. Not sure I could have handled a diagnosis and potential of financial ruin all at once. We had created a little nest egg for the future and were debt free….although not for long. We got the diagnosis and within 48 hours had therapists lined up. They were SLP, OT, PT, Music, and ABA. We had much of the early therapy paid for because he was under three and Babies Can’t Wait here in GA paid for it….except ABA. My wife was home with Collin while I worked and our focus was on him. Although I kept track of the hours that first month was a whilwind. Then I got the first bills and they combined to be $4,000!!

Whoa…Is this going to be the bill every month? Will insurance pay for this? I work for a big company. Of course the answer in 2004 for any state was a big NO.

So to make a long story short we blew threw that nest egg in a few months and like many other families any other savings ,investments and it quickly started eating into our monthly bills. We at one point had to put therapy on hold because we could not afford it. No one should have to do that to their child, especially during the early stages. We sold our house and lived in an apartment for about 8 months to get things under control.

My story is no much different than dozens of families that we knew at that time. What we did realize from the beginning was that my wife and I were  extremely capable of working with Collin. My wife sat in on years of ABA, Speech, OT and Physical therapy and learned how to work with Collin. When he was engaged in therapy we were working with him when the therapists left. When therapy was not an option, my wife would spend hours working with Collin during the day at the table and anywhere else she could. The best part was that it was having a positive effect.

This helped us come up with the idea of Maximum Potential. We started our project in 2007 with the belief that parents and family members could have an impact on their child. If they only knew what to do. . Over the past 4 years we have had our program utilized in over 300 school districts and in 14 countries around the world.

But people always ask me…How do you use the program. There are 5 distinct ways that we have personally used the program over the past four years.

Training ourselves. My wife sat in on 3+ years of ABA therapy before we began our program but she did not know everything. As we began to develop the program and watch the Lund’s present their material we realized that we still had a lot to learn. We also knew that we had probably forgotten a ton of what we observed during the early part of Collins therapy. So we used the program extensively at first to view and review the concepts that Coby and Janet taught. Throughout the years we have gone back and reviewed modules when situation have come up that baffle us. In most cases watching the appropriate video has helped solve a situation or reduce a behavior.

Training family: My family lives in the north and my wife’s family is close so they engage Collin in different ways and at different times. We sent a copy of our program to each of our families to review. We specifically asked them to review certain modules like behavior, social skills, reinforcement and the autism overview. They were able to take what they learned and combined with what we told them to make their experiences much more enjoyable. I have an old school Italian mother and it was tough at first to get her to change the way that she wanted to handle Collin but now things are much easier and that is because she and my in laws know what to do.

Friends: We trained our friends more by just passing along information then having them watch our program but it has made a huge difference. Just by giving them the  knowledge has given them a perspective of Collin and they have zero program spending time with him. See my blog post Perfect Vacation and you will understand how lucky we are to have great friends and the knowledge to give them.  Here is the link https://autismdad.wordpress.com/2011/04/16/perfect-vacation-for-a-child-with-autism/

Tutors/Helpers: Over the past few years much of Collins therapy has been done at school. We have had an ABA therapists that has worked with Collin about 6 hours a week. She was great but still cost prohibitive. So we have hired tutors to work with Collin. Some of these are teachers but others are high school and college students. These tutors have taken our program and used the skills that they have learned to work with Collin in a number of different venues. The first tutor we hired worked with Collin on Math. Another individual worked with Collin in our local Crossfit Gym. We have also used our program to train individuals who baby sit our kids. So the important piece is that they are not all doing discrete trials but working with him in his natural environment using the skills that our program taught them.

ABA Therapist: We were fortunate over the past 4 years to have an amazing therapist that Collin loved. At times if things were rough, she was the only one who (outside of his mom and me) who could get him to do work. Then last April I got an email from her while we were on spring break telling us that she was leaving the ABA world effective immediately. Wow…… Not her fault but we were in a bind. Many of the therapists we knew had a full schedule. So we improvised. Through a friend we found a college student who was looking to get into the field of autism. We hired her on as a baby sitter first and then took her though our program as well as some “Collin training”. She has been amazing and Collin really has taken to her. She is using our program and lesson plans to help Collin with his homework and then to work on some additional skills. Is she a BCBA… no but she also does not charge $85 an hour. This is not a knock on BCBA’s because they are amazing and I recommend that every family hire one if there is one in their area for at the very least consulting, but our new therapists is the right fit and without our course we would be struggling to get Collin the hours he needs.

So the point of all of this, is that the program we envisioned and developed is comprehensive enough to use in a number of different settings as well as broad enough to train a number of different people. If you are a family that just wants to add to the hours that you currently are doing we created the program for you. If you are a family that can’t afford therapy, then we created our program for you. Finally if you are a family who does not have a qualified therapists in your area, we created our program for you.

The final goal was to create a program that was affordable. In regards to expense, I  have put my son through college from the age of 2-9 and are still climbing out from a mountain of debt.. We developed this platform so that almost every family would have the ability to understand the concepts of ABA and to use them throughout the day with their child.

 

Feel free to contact me. I will be more than happy to answer any questions that any parent, family member of professional has.

Enjoy our program or view it at http://www.maximumpotentialkids.com

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Seize the Day

By Jeff Stimpson

 

“Could you give me a layman’s description of what’s happening in his brain when he has a seizure?” I ask the neurologist while Alex (13, PDD-NOS) scatters the pieces of the pre-schooler puzzles across the carpet of the doctor’s office. I have a vague idea of what’s happening in the skull of my son, but after all I’m almost 50 and have no job and my insurance is making me take the generic version of Topomax and not the name brand, so it’s best to get a confirmation from someone who probably has a vacation home.

“It’s basically a lot of excess electrical activity, isn’t it?” Yes: cxcess electrical activity that made me pant “Alex! Alex what’s wrong, Alex!” in the dark of his bedroom a week before while Ned looked on and probably, deep down, wished he’d been born into some other family.

Alex is 5’2”, almost 90 pounds. “Big, healthy boy,” says the neuro, who has just listened to Alex’s heart and lungs after prying him away from the puzzles. This doctor has a lot of stuff to keep kids much younger than Alex – and Alex himself, it seems – entertained. This doctor is sensible. There’s a test, for instance, where somebody like Alex goes into a hospital for 48 hours and has electrodes glued to his head. This is meant to measure brain activity, even if in only a snapshot. They discussed this test seven years ago, and I kept picturing and still keep picturing Alex peeling off the electrodes as fast as some sighing nurse can stick them on. “It wouldn’t work with him,” the neuro says, “and even if it did it would only tell us at best that he’s prone to seizures again, which we already know.” I appreciate this wisdom.
He puts Alex back on a small dose of Topomax and says to increase it slightly in the days ahead and to have Alex’s blood tested in a few weeks. He also prescribes Diastat, a valium syringe (Diazepam rectal gel) that will stabilize Alex for transport to the ER should he get what Fred Sanford used to call “the big one” when talking of heart attacks and go into convulsions. We would inject it into Alex’s rectum. Under my insurance, the co-pay for Diastat – two syringes (his and hers?) – is $252.

“Is it a syringe or a gel?” the insurance company rep asks when I call to confirm the co-pay. In the current insurance world, hundreds of dollars that I’m not earning hinge on the answer.

Almost seven years since the last seizure (“That we know of,” the neuro stimpulates). This week was consumed by calls to the company/ corporation that handles my new and rickety insurance “(“Thank you for your business!” is how they end one call), and by calls to doctors for rush appointments, and by calls to pharmacies for prescriptions that are suddenly high.

“Over the next 10 years, he may never have another seizure,” the neuro says.

I hope that around 2026 we find the $252 syringes dusty and forgotten in the back of a closet. Jill says that if the seizures continue, however, long before then she may have shot the valium up her own rear. All I can say is that I’m glad there are two syringes.

 

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

What To Observe On A Child Who Might Have A Diagnosis Of Autism

Written by Rosario Elejalde, MS, CCC- SLP, BE TSHH

As Speech Language Pathologists we need to be aware of some behavior/signs that children on the Autism Spectrum might have. It does not mean that every child with Autism will present these behavior/signs, but most of them will prompt us to make an accurate observation on the child’s responses to make the proper referral for an evaluation which can lead to an appropriate diagnosis.

As Linda Watson, Ed.D.,CCC-SLP Associate Professor from the Division of Speech and Hearing Sciences at the University of North Carolina, Chapel Hill, NC wrote in different articles familiarity with the literature about the early development of children of Autism will improve the ability of professionals to appropriately diagnose and intervene young children who may have a form of autism.

In her article “Toddlers with Autism, Developmental Perspectives”, she presented the development of young children with Autism by discussing the developmental domains of affective development, sensory processing and attention, praxis and imitation, communication, play and motor features, and stereotyped behaviors.

– Affective development: fewer facial expressions are seen in toddlers with Autism, and fewer are directed to other people. These children are more likely to show ambiguous facial expressions. Retrospective video research has indicated lack of social smiling in infants with Autism.

– Sensory processing, attention and self regulation: Many symptoms, reflective of sensory processing and / or attention disturbances are present among children on the spectrum. Among these symptoms are hypersensitivities to sound, aversion to social touch, avoidance of certain food textures, lack of response to pain, poor orientation to visual stimuli, and over focused attention with sensory features of objects (e.g. spinning objects, licking objects).

– Praxis and imitation: Imitation deficits are evident in the youngest children with confirmed diagnoses of Autism, and those skills impact the gesturing development of every child as a precursor of verbal language.

– Communication: Comprehension problems impede the child’s progress in social interaction and expressive communication. Eye contact, which is reduced in young children with Autism, will affect in regulating their communication as demonstrated by reduced babbling in early development. Another behavior which points to a diagnosis of Autism is when a child manipulates another person’s body (eg. placing another person’s hand to obtain an object). A lack of pointing is one of the key items for 18 month old children who are at risk for Autism. Limitations in the ability of young children to engage in joint attention have proven to by highly reliable in helping to distinguish the children who may have Autism.

– Play: Play skills in children within the spectrum are characterized by less proximity to peers, reduced level of social initiations, fewer social responses, lack of pretend play and isolated play. Difficulties in social skills and joint attention may reduce levels of engagement in social play.

– Motor features and stereotyped/ repetitive behaviors: There is evidence that some children with Autism without cognitive delays may exhibit unusual postures, clumsiness, and motor planning problems. Two of the hallmark features of Autism among others are repetitive/ stereotyped behaviors (e.g. arm/ hand flapping, toe walking) and ritualistic behaviors (e.g. lining up objects).

In the article “The first year inventory: Retrospective parent responses to a questionnaire designed to identify one year-olds at risk for autism” by Linda R. Watson and others from the Division of Speech and Hearing Sciences at the University of North Carolina-2007, establish the need to identify one year old children in the general population who are at risk for atypical development and additionally, to highlight children whose risk patterns seem most suggestive of eventual Autism. This screening instrument is not ready for clinical use yet and is limited to research use at this time.

We as Speech Language Pathologists can observe the children’s behaviors among the following domains to make an evaluation referral which might suggest the risk of Autism1. Social orienting and receptive communication: looks when named is called, seems to have trouble hearing, turns to look at pointed out objects, looks at people when they talk, looks up from play when shown new toy, seems interested in other babies, responds to where is, looks up from playing with a favorite toy by showing a different toy, by moving or shaking the new toy or by removing current toy, turns to parent when calling by name once or several times or when name is loud or other sound is used.

2. Social affective engagement: excited when knows what will happen next, looks at parent face for comfort, easy to understand baby’s expressions, smiles when looking at you, tries to get your attention to show things, for interactive games, to obtain toy, for physical games.

3. Imitation: imitates mouth sounds, body movements, activities with objects, responds to a new game by joining immediately, with a little help or with a lot of help, smiles and laughs in response to smile and laugh, smiles when touched or tickled, smiles when swung or bounced, when imitating a sound done by the baby he/she does not notice that sound is being imitated, notices sound but does not imitate it or notices sound and imitates it.

4. Expressive communication: tries to get attention by sound and gaze, babbles, uses communicative gestures, uses finger to point at things.

5. Sensory processing: overly sensitive to touch, avoids looking at parents, spits our certain textures of food, presses against things (people or furniture), body feels loose or floppy, keeps a toy or object in his/her mouth ( never, sometimes, often).

6. Regulatory patterns: sleeping and walking patterns regularity, regular feeding patterns, how many hours per night is the child sleeping ( more than 12, between 10-11, 8-9, less than 7 hours), times per night does the baby wake up (none, 1-2 times, 3 or more times).

7. Reactivity: upset when switching activities, difficult to calm when upset, number of times the baby gets upset during a typical day ( never, between 1-3 times per day, 4-6 or more than 6 times per day).

8. Repetitive behavior: plays alone for an hour or more, rocks body back and forth over and over, repeats simple activity over and over, enjoys staring at bright lights, gets stuck on playing with a part of a toy, enjoys rubbing or scratching objects, body gets stuck in positions or postures, enjoys making objects spin over and over, enjoys kicking feet over and over, stares at fingers when wiggling them, number of toys is the child interested in a regular day ( play with 1-2 special toys per day, 3-5 toys, with a large number of toys).

Observe the children behaviors, document those behaviors and make the proper referral for an evaluation. An adequate diagnosis of autism might turn into an early treatment.

Research indicates that children who receive early intervention before three years of age are more likely to demonstrate greater gains in language and communication development. From a clinical perspective, evidence suggests that early treatment lead to better outcomes for the child.

Rosario Elejalde, MS, CCC- SLP, BE TSHH works for Bilinguals Inc. / Achieve Beyond

http://www.achievebeyondusa.com
http://www.bilingualsinc.com

Pediatric Therapy & Autism Services. The company provides physical, speech and occupational and Applied Behavior Analysis therapy services to special needs children in home, clinic and community settings nationwide. For a list of resources used to this article or to refer a child for therapy services please feel free to email info@bilingualsinc.com

Hope for Parents who are new to Autism.

Hope for Parents who are new to Autism.
Written by Marian Helmick,
published by ARI (Autism Research Institute)

http://www.autismne.webs.com

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

 

 

“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.
(This story was published by the Autism Research Institute (ARI) “Treating Autism” 31 parent stories of Success and Hope and updated in the book Recovering Autistic Children.  The book is like a digest type of reading for parents of newly diagnosed children with autism, which contains parent stories and articles by Doctors and by Bernard Rimland and Stephen Edleson. You can order the book through Amazon.com or your favorite organization that carries the book.

 

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:

~~~ ~~~ ~~~ ~~~ ~~~

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” http://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.

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) http://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 http://www.feingold.org and http://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.” http://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.}

 

~~~ ~~~ ~~~

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 was in the school band last year and this year and plays the trombone. I am proud!

 

~~~ ~~~ ~~~

 

 

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

 

From Out of the Dark

By Jeff Stimpson

I’m on the floor of the boys’ bedroom about quarter past nine, listening to the iPod and sipping red wine like any other good dad when I notice Alex’s arm over the frame of his bed. I reach up to put his arm back into a position more comfortable him to sleep when I feel his weight come against my hand and I figure he’s falling out of bed until his head appears and starts to dip toward the floor. Then his body tips out with all the bedclothes and he cascades, limp, almost on top of me out of the bed in the dark.

“Jill, Jill!” I scoop him up – much as I can “scoop” a five-two kid who’s pushing 90 pounds – and hold him as a silver thread runs from his lips. He trembles; his knee muscles fold like dough.

The last seizure was almost seven years ago. During the last bad one then, his head locked to the right. His head’s straight ahead here, but his eyes stare dead. “Alex? Alex!” He will not come back to my voice. Jill and I check all the signs of respiratory distress. He hangs there.

The yardstick of his growth that I was taught to follow was his lungs: He’ll grow, they told us years ago, his lungs will get bigger, and he’ll kick the oxygen tank and canula. And he did grow, and he did kick. His brain’s a tougher sell than his lungs, I guess.

Jill keeps a clear head. “Keep him upright. Ned, go out and time this.” Even I realize, my own breath coming short, that she tells Ned to do this to get him out of the room. He doesn’t leave, though. “We learned what to do in sibshop,” Ned says. “Keep him upright and time it and call 911.” Jill notices that Alex is hot and that heart is hammering. I hold him in the dark while Jill and Ned are in charge.

Seven years: more than half of Alex’s life, long enough for the brain to have caught up with the lungs if it was ever going to, and long enough for a dad to learn to live with as stable as a life as he can when his son’s autistic but at least seizures are behind him. I like to think things move ever forward in this life, but lately it’s hard to think that way.

My arms feel him return after a few minutes (“About five minutes,” we’ll tell people later – Ned never did get out of the bedroom to time it – and when their eyes go wide we’ll revise the time downward.) Without so much as “Thanks,” Alex snuggles down to sleep and is soon cooler and his chest rises and falls with even breathing in the dark.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

Cheat Sheet

Cheat Sheet

This is the tip sheet for the growing number of strangers who spend time with my 13-year-old son Alex (PDD-NOS):

From his family:

Alex likes going into Laundromats and look at the machines. He also likes grocery stores and helping pick out and bag produce. He will pick items off the shelf if you tell him what kind and point to them and tell him how many.

He likes to take long bus rides and likes to ride the Roosevelt Island tram. Sometimes he also likes drumming. He also likes to go to the Apple Store and to FAO Schwartz. Transitions are important to Alex; it’s important to tell him what’s coming next.

He doesn’t really like movies or museums or the zoo, but he will go with you to them. Mostly he just likes walking the sidewalks. Make him take your hand at intersections. We are trying to teach him to read the walk signals. Sometimes Alex will bolt ahead on the sidewalk. Stop and call his name and say, “Alex, walk with me,” and he’ll come back.

He likes Chips Ahoy cookies, Popeye’s chicken strips, Burger King chicken fingers, and KFC regular strips. He also likes Utz Extra Dark pretzels (available at many Duane Reades), La Crème raspberry or strawberry yogurt, and sometimes bananas.

Sometimes Alex bolts when in a new place inside. Sometimes it means he’s just exploring or wants to find something that he likes, like a big ball.

He doesn’t interact much with peers. He will bite himself on the forearm when frustrated.

From his teacher:

“Alex will be provided with visual and mobile schedules to provide more structure to his day. Alex will be taught to ask for a break, sensory time or to be removed from an unstructured environment, in order to decrease the inappropriate behaviors of biting, yelling, throwing himself on the floor and running away. When Alex demonstrates an appropriate behavior, such as asking for a break, he will receive one token. For every three tokens he receives, Alex will receive a reinforcer (such as iPad free-choice time). When Alex demonstrates an inappropriate behavior, a staff member will direct Alex to a visual cue so that he may ask for a break, sensory time or to be removed from an unstructured environment.”

From his summer camp counselor: “Alex enjoys nature walks through the grounds of camp, frequent boat rides on the lake, and splashing around in the pool with his counselor. He enjoyed taking part in parachute activities and ball games with his counselor. His favorite art activity was undertaking activities in his own art book. As the session progressed, Alex became more comfortable in large group activities. He enjoyed listening to music.”

I gave this to them at overnight respite, where Alex bolted a few months ago but where, this week, he seems to be feeling more at home as they ease him into the program a few hours at a time. About the most positive comment about Alex came from Alex one morning when I dropped him off at the program: “Bye bye, daddy. Bye, daddy.” That’s when things are going well.

+++++++++++++++

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog.

Summer Plans???

As parents of children with autism summer vacation can be anything but a vacation. Our concerns are far greater than just what to do to keep our kids busy for 8 weeks. Issues such as regression, social integration and new goals for the upcoming year are added to the normal challenge of having our children home for the summer. In many cases we are working and our children are at home, in a camp or with a sitter who may be a better fit for our wallet than for our child with autism. In other cases we are the primary caregiver and now we have to fill each day with activities that can keep our children engaged. These can be daunting tasks but are the reality that we live with as parent of a child with autism.

There is not right or wrong answer to how to best engage your child,  but as parents my wife and I decided that we were not going to have our son sit in front of the TV all summer and not be productive. Now we are in no way super parents and just like any child, our son has plenty of time to listen to music, swim, watch videos and just have down time over the summer…but he needed to keep moving forward or he would get further behind. During Pre K and Kindergarten we continued to use his therapists and he was in all types of therapy for approximately 8-10 hours a week. Unfortunately after 4 years of this, it became apparent that we could not afford this anymore. We live in a state that is still  years away from insurance coverage so even then, we knew that we needed to come up with other avenues. Plus Collin had therapy all year long but in school and at home and he needed to keep some of the old but also incorporate something new. But how?

In 2007 we went to a seminar that taught us how to incorporate ABA training in any environment….not only for Discrete trials. (Let me preface this by telling you that my wife who is amazing had over the course of 4 years sat in on hundreds of hours of all types of therapy and she was able to work with Collin both at home and outside the home. This not only saved us thousands of dollars in therapy but gave Collin extra help throughout the day.) The seminar gave us the confidence and the idea that we could and should go out and train everyone who worked with Collin. That should have been a no brainer but sometimes you need a little help recognizing the obvious.

This enabled us to work with others.  Over the past 4 years we have trained a number of people. We have trained family members and friends to understand Collin and we have taught them skills to use with him wherever they are. Behavior Management is huge as well as reinforcement and understanding social cues. Last year we trained a member of our Crossfit Gym to work with Collin and twice a week he went to they gym. This year our therapists of 5 years quit the business and we were stuck. We are training a college student to work with Collin this summer to get ahead on his IEP goals. Is she the quality of a BCBA…no but she is doing great. Am I saying ditch your therapists or BCBA for a college student… absolutely not. I think our therapists were amazing and I believe the good therapists deserve every penny the make and a lot more credit than they get but our situation made it difficult to find someone new.

The point of all of this is that as parents if we have knowledge we can provide much of what our child needs over the summer. This may be the knowledge to work with our child one on one and be that therapists. It may be to work with a current therapists to learn how to follow up to maximize what is learned or it may be the ability to train a family member, sitter, trainer or college student to work with your child throughout the summer. Whatever that decision is, it is imperative that you keep your child engaged and moving over the summer.