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Lauren Rodgers

Email: lauren_rodgers@yahoo.com

Lauren’s Son:
Lauren’s son is profoundly deaf, and mild-to-moderately autistic
He was one-year-old when diagnosed with deafness
The doctors do not officially know what caused his deafness; they believe it occurred due to some kind of episode in the womb (i.e. a stroke)
He was 11 years old when informally diagnosed with autism
His pediatrician wrote Lauren a diagnosis of autism in order for her son to receive services for autistic children at school
No formal testing has been offered or available to confirm his severity of autism

Warning signs for deafness in infants or children:
Being easily startled
Not making the same noises as other children

Warning signs for autism in infants or children:
Lack of affection
Lack of eye contact
Looking at you from the corner of the eye, not straight on

Typical signs about sorting, order, and routine:
Deaf and autistic children may find it difficult to transition into middle school, when they have to begin changing classrooms

Having a Children’s Hospital nearby is a huge resource and should be taken advantage of when available:
They offer multiple types of medical facilities (i.e. neurology, cardiology, etc.)
Medical records are kept at one location

Tips for Parents:
Be careful of all of the advice you receive from doctors, as some doctors are quick to offer modern medicine (i.e. medication), draw conclusions, or categorize
Be careful of labels – labeling children with any diagnosis or disability – unless the label helps get the child services they need
Know, as a parent, to pick and choose between the available advice and the appropriate advice for your child

Deafness, and the Deaf community, are “a welcoming world”:
It is an opportunity to become a part of a new culture
It is an opportunity for your deaf-autistic child to have as full of a life as anyone else, signing, without having surgeries

Autism is also a supportive environment:
The autism spectrum is very broad
There are a wide range of kids with different levels of severity
The spectrum makes learning about autism more challenging
Doctors will likely not tell you about any support or advocacy groups
They tell you what you need to research and leave you to do it yourself

Great resources for parents are:

Social Workers:
They are available through your state’s Department of Mental Health
They can get parents on a list to receive holiday gifts for the children
They can get parents signed up for available training sessions related to the child’s disabilities
They have the time do to research for the parent

Children’s Hospitals:
They have a parent resource center that can provide information packets on various topics
Your child’s school, other parents, and teachers:
You can talk to other parents to find out what methods are working for them
You can talk to your child’s teacher to find creative ways of dealing with your child at home
You can talk to your child’s teacher to find out what methods they are using in class that is working with your child
You can obtain training in American Sign Language (ASL) at a community college, in order to aid in communications between you and your child

Most of Lauren’s training for her son came directly from her son:
No one else told her about any other training that could help her with her son
Lauren says to “try things and if they don’t work for you try something else”
“It is a lot of trial and error”
“You just have to not be set on one particular thing”
Lauren’s son communicates using ASL and the picture exchange communication system (PECS)
“Receptively, he understands everything in Sign”
He has been receiving ASL for 5 years
He has a large Sign vocabulary
He understands 2 and 3 step instructions in Sign and will do them
Without ASL, “he would just never communicate” (before learning PECS)
He’ll never initiate communication on his own in Sign
“Communicatively, he is a PECS kid”
He has been using PECS at school and home for one year
“He’s found that (using PECS is) the best way to express himself”
“He’d rather pick a picture and show you” (to communicate, rather than sign)

Unfortunately, Lauren does not have a PECS binder she can take everywhere when leaving the house or school, because they use big boards that would be difficult to take out, which leads her son to:
Take (lead) her to whatever it is he wants
Get whatever it is he wants on his own
Have choices made for him
Cry a lot
Be very sad

Communication Options:
No communication options tried have not worked
This could be due to the lack of alternatives available
If alternatives were available, they “probably would have tried and failed others, if more were ever offered.”

Technology:
Lauren’s son has had Frequency Modulation (FM) hearing aids
They cost about $1,000 each
He has been responding to basic sound awareness during sound activities with his speech therapist
He now recognizes a couple of sounds
He typically won’t react to sound unless that is his only job of the moment – to listen for sounds and react

Lauren was told by doctors her son did not qualify for cochlear implants because:
His “mental capacity was too low”
Doctors thought he may never learn to speak

Lauren learned of her son’s educational options through her local school district:
The school district told her the only available education option was for her to send her son to the Missouri School for the Deaf (MSD) in Fulton, Missouri, since her son was non-verbal and she wanted him to continue to sign
Due to sexual and physical abuse that occurred in the dorm, she pulled her son out of MSD
Through her own research – by looking for information on message boards in the Deaf community – she found a small, public school (i.e. separate day school) near her home that served 40 Deaf students in a signing environment
The school district did not tell her about the day school
The school district does not list the day school online under their public schools listings

Lauren believes this is because:
More deaf children are being educated in general education settings
The school district tries to close the facility each year due to the small population size served

In the separate day school, Lauren’s son can be educated in either the classroom with a teacher who specializes in deafness or autism, but not both:
Her son’s teacher is Deaf and has a degree in Deaf Education
Her son’s teacher is not specialized in autism
As such, the teacher does not know how to deal with some of the autistic behaviors demonstrated in class
Lauren is trying to get autism training for the teacher

Autism Classroom:
Lauren does not believe her son would benefit from being in the autism classroom, because she feels her son would lose out on the communications aspect of being in a classroom with a Deaf Educator who uses ASL
There are consultants in the classroom who specialize in autism
Her son is responding very well to his educational placement in the special day school
This is attributed to his Deaf education teacher having higher expectations of him and challenging him to do things no one else would
Before, with other teachers, he was coloring all day long
Other teachers avoided challenging him to avoid misbehaviors
Now, he can now tell time and read
He does not like his teacher very much, and throws his desk more often, because she pushes him to learn

Lauren feels the special day school is a better fit for her son academically over the residential school because:
She is able to be more involved in his education and life
He receives instruction and communication all day and night
At the residential school the instruction stopped after 3:00

Although Lauren feels the special day school is the best fit for her son now, she also believes – if she could find a residential school that could meet both his autism and deafness needs – that a residential school could be the best environment for him as a teenager because:
He could be signed to a lot more
He would be in a supportive Deaf community
He could make Deaf friends
He could get involved in extracurricular activities
He could learn how to do things for himself that she and others still do for him (i.e. make his bed)
Lauren has fears that – if her son was to attend another Deaf residential school – that he may still be the “special kid at a Deaf school . . . because he’s not signing like the rest of the kids and he’s not responding when they talk to him”

The key advice that Lauren has received from others to help her and/or her son involves:

Potty training:
Lauren’s mother suggested she try the “old school plastic pants / underwear” as opposed to pull-ups
Lauren’s son was 3 years-old when she tried the “plastic pants”
It only took her weeks to break his potty habits
Her son did not like the way the he felt when he had used the bathroom in his pants and began to search for the bathroom wherever they went
Lauren also used big waterproof pads at night on his bed to break him of bedwetting
Because the pads did not soak up the water, her son felt when he was wet and learned to get up at night and go to the bathroom

Behavior:
Lauren was told that behavior is communication
Realize that whatever your child is doing behaviorally is his/her way of communicating his/her needs or desires

Battles:
Lauren’s mother reminded her to “pick her battles” because kids “get so tired of hearing no”
Children eventually become immune to stop, no, and don’t if you say them all the time
Remember to just focus on a couple of things when there are behaviors that you do not like

The key advice from Lauren about deaf and autistic children to other parents relates to:

Finding support!
Lauren states “the benefits of having other people in your neighborhood and your network can make a huge difference”
You can find support everywhere
Advocating for your children and knowing your rights!
Lauren recently fought her son’s school to get him a one-on-one assistant – a Deaf Communications Specialist – that could rephrase and reiterate teacher communications in order to help him better understand and, thus, learn class material
Originally the school told her “no”, that her son did not need an assistant
Through advocating for her son, she was able to get him the assistance needed
Lauren stated, “if I believed what they had told me time after time then it wouldn’t have worked”

Not giving up or accepting what you are told!
Exceptions can always be made to the rules
Don’t let the school district save money on your child
Don’t let the school district cut back at the expense of your child
Getting your child the services he/she needs is not “as trivial as the teachers . . . might make it seem”

How to learn about your rights:
Lauren learned about her rights through Educational Coaches available through the Missouri’s Mental Board of Disabilities (organization may vary per state)
Educational Coaches are people who specialize in special education laws – some Coaches are lawyers
A Coach trained her about her rights and advocated for her during IEP meetings at her son’s school when she was fighting to get him a one-on-one assistant
According to Lauren, Educational Coaches “make all the difference” when you are trying to get services for your child

The key advice from Lauren to teachers working with deaf and autistic students is:

Move to Saint Louis!

She commends teachers who choose to work in a field where they’ll come across kids that are deaf and autistic

Be flexible!

Remember that receptively one method may work, but communicatively another may work
Break down instructions
Remember that students may understand things on different levels
Do not let anyone fall behind or become “the weakest link”
Call parents off-the-record to inform them of accommodations a student could be receiving in the classroom when they are not receiving it
Always have something positive to say to parents when speaking to them about their child
Don’t always call with bad news or comments
Parents will become defensive if you never have anything good to say
Utilize communication journals to keep communications open between school and home
Make home visits / follow up with home
“A student’s home life can tell you a lot about what you can expect in the classroom”

Additional advice from Lauren for parents and professionals:
Do not be disappointed when something does not work for your child or student
Remember your child / student is an individual
Sometimes “you have to pull a little bit from everywhere to make it work”
Do not get wrapped up in labels
“Your child’s going to be what they are whether anybody recognizes it or doesn’t recognize it”
Give up the plan!
Having specific expectations about your child or student does not benefit you
Expectations lead to disappointments and sadness
Expectation can lead you to miss out on your child’s life
Don’t be scared about having another child
Let life occur naturally

*Interviewed by Heather Nicols, UNF

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