Services

By Jeff Stimpson

I tried to line stuff up for Alex this last Thanksgiving break. “The holidays book up well in advance – parents jump right on those school holidays,” said the lady who runs the overnight-respite program. I worked for months to get Alex into this program. I called her in early October about overnights through the end of the calendar year. By Saturday morning Alex was saying, “David’s coming? Rosa’s coming? David’s coming?” as he slipped on shoes, hoodie and backpack. “Take a walk,” he said. “Wanna walk!” David and Rosa are “companions,” I guess you’d call them, if like us your son was too old for a “babysitter.”

Autism doesn’t take a four-day weekend. By the morning of Black Friday, Alex was bored out of his mind. He didn’t want to do letters with me, didn’t want to pick up his room or put laundry away (jobs he usually throws himself into). He yelped  into his iPad. He wanted to go out, hour after hour. I took him out; he wanted to go out again immediately after we come home, preferably with somebody besides mom or dad.

The big hope for Thanksgiving Break was overnight respite, a terrific program in which guys like Alex are taken by their weary fathers to a nondescript apartment building on West 95th Street near the river, past the security guard who takes one look at Alex and says “Sixth floor,” and up to a three-bedroom where Alex could stay for days and nights, gaining his independence while his mom and I catch up on our sleep.

Alex crapped out of this program last spring by bolting. Then the supervisor worked with me to let him go there for daytimes during the last week of August. He did well. So well, I guess, that the second morning the supervisor called me and said they could take him for four days, until Labor Day eve. I was tempted but he wasn’t ready, I told her. From that offer I came away with the idea that holidays are clear for vacancies in overnight respite; I come away with the idea that most families with autistic children have better parents than Alex does.

Parents jump right on those school holidays. “What’s Alex’s schedule in February?” the supervisor asks. I see that adult programs take finagling, unlike the children’s programs that Alex often just slipped into. Programs for grown-ups – the kind of grown up Alex is becoming – requires thought, planning, more thought, and a frightening amount of plain old luck.

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, the Lostandtired blog, The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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Autism Night Before Christmas by Cindy Waeltermann

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…

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

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

Perfect Vacation For A Child With Autism

As individuals we  look forward to having a perfect vacation. We are often looking for the perfect time which typically is having the best weather, food and activities. As a parent of a child with autism we have the same desire but we also desire few disruptions, schedule changes and outbursts. At times we are nervous to go in public or meet up with people who don’t know our kids for fear that they will do something that dare I say embarrass us.

Two weeks ago we went on the perfect vacation. The weather was OK, the food was nice but we had an amazing time. You know why…. because we were at ease. Our son Collin is not severe by any means but at times can do things that make us cringe. What made this trip go so well was that we were surrounded by friend who could care less that Collin has autism. What makes this group so special is that they embrace him, never stare and flat our enjoy his company.

The don’t care that he flicks a sock while listening to baby Einstein. They don’t care that he will eat all the bacon for breakfast or that he literally puts Ketchup on his Ketchup when he eats burgers and fries. What they care about is that he has fun. They treat him like they would any other child and that makes us relax and smile. At first I thought that they did it because they wanted us to be comfortable but then I realized that they truly love him and enjoy his company. Sometimes I think that they like him more than us.

It is amazing that since we met this group over four years ago, our life has been so much happier. No longer do we worry about anything that Collin does because chances are if you have been around us you will see that at all times one of us is doing something that makes Collins behavior minor …. and that makes Collin smile.  He is more engaged at the beach trip than during the rest of the year. We wish we could replicate that feeling for him every day.

So it is not always about the perfect house, beach, weather of food, but it is about the perfect company and I can tell you that hopefully you are as lucky as us.

Oh and if you happen to be next to a house where 10 people are chanting Nachos, Nacho’s Nacho’s next spring break… be sure that it is us and Collin started it!!!!!!

Understanding School Autism Training

You may know that teachers and educators are usually obliged to take ongoing classes or courses. This might fall under the description of continuing educational units, or even help them to qualify for an advanced degree. Interestingly enough, educators and even many parents can benefit tremendously from alternative training too. Just consider the immense value of school Autism training.

This is an organized way for educators to learn the best policies and practices for supporting their students with ASD (Autism Spectrum Disorders). School Autism training will usually help educators to understand the alternative approaches necessary for students with any of the Autism disorders. Remember, Autism is not a standard condition and it is found in a diversity of forms and levels of severity. Some students may have only a mild range of symptoms and others may have a wide range of difficulties with communications, socialization, and repetitive behaviors.

Clearly, the student who cannot learn in the same manner as a majority of the other students in a classroom is going to need teachers and classroom staff with additional skills. Because the standard guidelines for most schools are geared towards inclusiveness, it means that school Autism training can be easily seen as relatively essential.

A lot of teachers and educators worry, however that school Autism training will be too difficult to manage or too comprehensive to demand of their already busy teachers and staff. Fortunately, there are training systems that utilize today’s most convenient technologies. For example, video instructional courses, printed manuals and workbooks and online access to questions and answers are all part of the best programs.

It is also important to note that a very good or high-quality program will make itself available to more than just the teaching or educational industry. For instance, many parents of children with ASD simply cannot afford the kind of extracurricular or advanced teaching and training that would be so beneficial to their child or their children. A good training system, however, will make all of the materials available to parents as well as teachers. In fact, some of the best actually design specialized courses for parents who hope to intervene as soon as a diagnosis is made.

This is actually one of the critical issues where ASD is concerned because the sooner the child begins to learn how to overcome the symptoms of their condition, the better the results. This usually means that parents who deal with pre-school age children are the most likely to have success, and a home-based program is a very powerful tool for them to use.

Garrett Butch is the father of a 8 year old with autism and the founder of Maximum Potential Group http://www.abatrainingcourse.com.
Maximum Potential has developed courses that train parents and school systems how to work with children with autism.
View one of our sample videos and contact us at http://www.abatrainingcourse.com/video-demos.htm