WHAT TO DO IF YOU
§ Stay in the car, unless you smell gas
§ Call 911 to get the police there, try to tell them your location if you can, street name and part of city you are in. Tell them you have Autism and to go slow. Tell them if you are hurt or not.
§ Look in the glove compartment and get out your registration to give to the police officer and your (insert insurance carrier name) proof of insurance
Call Mom (insert
or Dad (insert cell number)if you cannot reach us, call (insert sibling or trusted family member or friend), (insert cell number)
§ When the police arrive tell them you have Autism and to go slow. Tell them if you are hurt and what happened to the best of your ability.
§ Do not say it was your fault because it may not be your fault. That is for the police to decide.
§ If the car is not drivable, tell the police you have Triple A and they will come and tow the care. Mom or Dad will be there as soon as we can to take you home.
§ Remember to remain calm, Mom and Dad will not be mad at you, we all can get in accidents.
What to do if you are pulled
over for speeding.
Wait until the
officer comes up to your side window. DO NOT GET OUT OF THE CAR! This may take a few minutes be patient. Open the window and tell him you have Autism
and to go slow.
He or she will
ask for your license and registration and proof of insurance. Give them your license out of your billfold
and get the registration and proof of insurance out of the glove box in an
envelope marked “Registration and Proof of Insurance” and give that to him as
well. At this point he will go back to
his car and check on your information.
He will come back
with a ticket and have you sign the sheet that says you were speeding or he may
let you go with a warning. Be nice and
thank him/her for his time.
§ Give ticket to Mom and Dad when you get home.
§ Many people get speeding or other sorts of tickets, you made a mistake and we all make mistakes.
What to do if you have a flat tire or car trouble
§ Pull the car as far off the road as you can. It you are on the freeway, pull off to the
closest median. The best place is to the
right but if you are in the high speed lane, pull to the left. Put on the emergency flashers. Stay in the car unless you smell gas or it is
A. Tell them you have Autism and to go
§ Tell them where you are to the best of your ability.
§ It may take Triple A up to an hour or more to find you.
When the tow truck gets there, give them your AAA card and get in their truck. Tell them to tow it to (Insert your auto repair shop) if it needs to be towed or give them the keys to the trunk if the tire needs to be changed.
If the police come, tell them you have autism and for them to go slow.
Call Mom or Dad at any step in this process if you need help.
When our son with ASD began driving, I had a brainy idea to put three envelopes in the glove box that told him what to do in three situations:
What to do if you get into an accident.
What to do if you get pulled over by the police.
What to do if you have car trouble.
Five years later, he has used two of the envelopes! The first I described in a blog about a year ago where he was pulled over for speeding. The second was recently when I received the dreadful call that he had been in an accident. The great news, no one was injured, he handled the situation with ease, calling the police and completing the paperwork on his own. The sad part is he is out $2200 for the repairs and it may have not been his fault. However, he could not 100% describe what happened and the police woman said it would be a “he said he said” situation and if she had to cite someone it would be our son. We decided not to turn it into the insurance because we have a $1000 deductible and insuring 23 year old male costs enough! He was not cited in the accident.
The gentleman was backing into the street and backed into our son. He said there are accidents there all the time and that Jack was trying to pass him on the left. According to our son, he was stopped and blew his horn several times, but the guy just kept backing. Jack was turning onto that street from another street and so Jack could not back up into traffic. If it was my son’s fault, o-kay he bought the claim. If it was the other guy’s fault, shame on him for not taking the blame. There was no damage done to his vehicle. So we live and we learn.
The letter in the glove box, gave him step by step instructions of what to do. The policewoman said she read it over his shoulder and she said she changed her whole approach after she read the instructions. Her only recommendation is for Jack to hand the officer the instructions after he reads them, so they can be clued in quickly.
Sometimes as a parent with a kid with autism, you have to work on back up plans or up front plans to help them maneuver the typical things most people can get through with ease. However, a traffic accident is not something that happens to us (thank heavens) every day. My 18 year old typical daughter says she finds comfort in the three letters in the glove box as well.
I will post them next. Feel free to forward to your loved ones whom the envelopes can help. Please download my apps as well so we can continue to raise awareness and money for autism charities.
Available on The App Store:
Training Faces, Training Faces Española, Health Care Claim Help, The Superior Sex Pro -Trivia game for guys against the girls competition. A percentage of each download goes to autism charities
Available on Google Play and Amazon:
Training Faces, Training Faces Española
I was sitting in the pew at church last week and a huge grin came across my face that I could not hold in. You see, at our Saturday afternoon service the organist has our son play a solo on his cello after the main verses are sung. I can see many people look back to the choir loft to see what is being played and who is playing the cello. It gives me the most immense proud feeling to be this young man’s mother and to know that maybe only a handful of people at the service know he has autism and only my husband and I know the challenges he has faced to get there. At the end of the service he will drive home (yes, he drive a car), and my husband and I usually go out to eat or see a movie. It has taken several years, but our Saturday nights are ours again.
If you were to describe this scene to me 20 years ago, I would have thought you were nuts. When we first received the diagnosis of autism, I told my husband I would never be happy again as long as I lived. I would be lying if I told you the diagnosis did not turn our world upside down. But I am happy, and this life is a new normal for us, but that is not always a bad thing. Hearing your son play for 200 people each week is a delight for any parent, whether they have a disabled child or not.
Although he started speech therapy at 20 months old, our son, Jack, wasn’t officially diagnosed with autism until he was approximately three years old. He was diagnosed as moderate to severely autistic. He is now a 22-year-old ex-college student (college ultimately did not work out in the long term plans) who played cello in the university orchestra, drives a car, has a full time job, performed at Carnegie Hall with his high school orchestra and with his sister arranged the music for “Training Faces,” an app we developed to help individuals with ASD and other special needs to improve the recognition of emotions. He is now considered to have high functioning autism or Asperger’s . He still has many challenges in front of him, but he is an incredible young man!
I write this as a motivational piece for parents just getting the news of the autism diagnosis. Your lives have forever been changed, but that doesn’t mean it is over or your child’s life is doomed. We are very fortunate that Jack has achieved all that he has so far, but at the onset of his diagnosis, it was a devastating blow to our family. I cried for six months to and from work and then I got angry and began looking into every therapy we could afford or had time to do. If you are reading this and you have just received the diagnosis, my best advice is to take the experts’ opinion with a grain of salt and get busy with your new mission… to help your child achieve all they can, come hell or high water. Take no prisoners.
After the Diagnosis
My husband and I like to joke that after the diagnosis the “schlepping” begins. We schlepped to the medical specialists, the speech therapists, the occupational therapists, early intervention pre-schools, music therapy, vision therapy, and special needs swimming lessons, just to name a few. Our daughter, who is five years younger than our son, could probably tell you her young life consisted of waiting rooms and eating in the car on our way to one or more of these schlepping routines.
What Works and What Doesn’t?
It seems everyone has advice these days, so take my advice as just one person who has been in your shoes. When our son was diagnosed, he was on the crest of the tidal wave of ASD (Autism Spectrum Disorder) and there wasn’t much information on autism. I remember going to the library when Jack was diagnosed in September of 1994 and finding out the most recent book on autism had been published in 1978. There was no internet to speak of and I found few professionals who could give good advice. With Autism Speaks and many other websites, today’s parents have a plethora of therapies to turn to. Try not to be overwhelmed by it all and pick what you think will work best.
We were fortunate enough to have our HMO pay (can you believe it?) for us to see Dr. Stanley Greenspan in Bethesda, MD for a three hour session. (Google his books and methods for more information.) He was one of the first to coin the term PDD, or Pervasive Developmental Disorder. He had a significant impact on Jack and on us. We were stunned when we left his office; many times I think that was the best three hours we ever invested. His prescription was for one of us to quit our job or the very least go part time and spend 12-15, fifteen minute sessions with Jack per day in “floor time” keeping him engaged by following his lead Now I guess they call it a form of ABA (Applied Behavior Analysis therapy) but we just called it “floor time.” I remember we had a sheet on our refrigerator that we put a hash tag on each time we completed a 15 minute round. We also hired our teenage neighbor to do a few sessions after she got home from school. My husband was the stay at home therapist in those early years. Truth be told, he was better at it and at the time I had the better job with the better insurance. We didn’t have much money and we had little time together. My husband’s part-time job had him working second shift and every other weekend. We went for years with little time for date night or much else. But, remember, nothing lasts forever and you will get your life back someday.
We continued the “floor time” for approximately two years, until the time our daughter was born. Jack attended two early intervention pre-schools, one in the morning and one in the afternoon. Getting in his face and following his lead left him little time to self-absorb and be in his own world. Even though we didn’t keep up with the twelve sessions per day, it got us into the habit of working with him intensely whenever we could. In second grade, homework started to fill those evenings with 2-3 hour sessions at the kitchen table and replaced “floor time” as he got older.
We would recommend Speech Therapy on pragmatic skills as often and as much as you can afford. Speech Therapy also gave us a break from the floor time. But, make sure you have the right therapist. Our second speech therapist was used to working with older stroke victims. There is a huge difference between people who once knew how to talk and those who are just learning for the first time. Make sure your therapist has experience with kids on the spectrum and make sure they love their work. If they truly don’t like the work, you can usually detect that in the first few sessions. Be with your child in the early stages so you can assess whether the therapist is going to work out and also so you can pick up some pointers on what you can be doing at home to make the sessions go even further. Jack had weekly or bi-weekly speech therapy until he was 14 years old. I think I would have continued it, if it had not been for the insurance no longer covering the sessions. On that note, get someone to help you with the health benefits side. Knowing how to manage health benefits is a major job on its own, and if you know what your insurance covers, you may get more therapy. Also look at your state’s department of insurance website and search “autism coverage.” You may have extra benefits that should be covered for autism. This is a moving target, so check back to the website often.
Occupational Therapy or OT
Those that know little or nothing about autism cannot seem to understand why a child would need OT. He doesn’t have a job, so what does Occupational Therapy have to do with autism? OT for kids with ASD is a way to help them control the chaos that their body is dishing up minute by minute. A good part of the OT is learning coping mechanisms or calming techniques to help the child get a grip on the sensory overload that is autism. Things like ‘swinging’ to help the vestibular system find balance, ‘brushing’ to calm the prickly feelings and ‘deep pressure’ to help the body feel in control of its space. I look at autism as a sensory overload affliction. Instead of feeling calm, your body and mind are constantly being attacked on all levels and your mind cannot wrap itself around how to survive in this mode. Something like arm flapping may give the individual with ASD a way to cope with the chaos. We found OT offered very helpful techniques on how to handle the sensory overload. (Google “Sensory Integration” and you will get more tips on what this type of OT can provide.) We started to see progress when we were able to find incredible OT and speech therapists.
This one was one of those I had to see to believe. A friend told me about a vision therapist who had been helping her son. Never under estimate what other parents can help you with. I made an appointment with the therapist who then sent us to a special ophthalmologist. He completed a full evaluation and his determination was that our son’s eyes were not focusing together. Sounds silly, I know, but after months of the vision therapy, we saw improvement in his ability to focus and he told us he could see better. He still wears glasses to this day and he wants to wear them because they help him focus.
We also tried “Irlen” lenses that were tinted to help with the sensitivity to light. Jack wore these tinted glasses for 4th- 6th grade. Did they help? We really weren’t sure, but then the florescent lights in any school building or office can drive you crazy if the light is flickering. He changed school in 7th grade and the “Irlen” glasses went by the wayside. He looked like a rock star for a few years, so no harm in the long run.
Our son Jack happens to be musically gifted. He played a song the first time he picked up a guitar and he is able to write music verbatim from hearing it a few times. We had him involved in a music therapy group when he was older and he loved it and it helped him get better with his social graces. Most importantly, he had a social outlet, and for many individuals with ASD that is much needed. If music doesn’t work for your child, find another hobby for them to join. In January, Jack is starting a dance class and he has taken Taekwondo in the past. Social therapies do more than give a child techniques on how to be more social, it can also help a child with a social outlet.
More to come in my next blog on the “snake oil.”
Our son is a current employee of Sweaty Bands (www.sweatybands.com), a woman-owned business that sees the value in diversity. Finding the right fit and the right company is not easy, but it can be done with tenacity and finding the right company to take a chance. Here is the story of his journey to employment after high school.
Life after High School
I remember the day Jack graduated from high school. Our son has high functioning autism and so one great relief in his transition to adulthood was my silent celebration that I would no longer have to attend the dreaded Individualized Educations Plan (IEP) meetings. These are meetings where you meet with your child’s team and figure out where he is on his academic path and set goals for the next school year or several months. It would be an understatement to say these were some of the most stressful negotiations of my and his life and I have been in sales for 25 years. Little did I know that after high school the stress of his future does not go away, but gets more intense in some areas.
Let me tell you about my wonderfully talented cellist, bass player, composer son who happens to have autism. He was diagnosed at three with moderate-to-severe autism. After years of speech, occupational, vision and one-on-one play therapy, his diagnosis became high-functioning Asperger’s Syndrome/autism. When he was 12, his IQ was tested and his non-verbal range was 112-115, normal is 100. He was tested two more times with the same results. His verbal tests were lower than average, but I have always accentuated the positive. He has a lot going on in that brain of his, if we could just get it out.
After high school, he tried a community college for one semester. He was doing well in basic algebra and beginning college 101 classes and maneuvering the campus and classes well on his own. At another nearby university, he played cello in the university orchestra. For the next semester, he transferred to that university. He did well for the first part of the term and then the wheels fell off. You can get great help from university disability centers if you know when and how to get help. If you are unable to do that, the chance for a successful college experience is slim.
After our “come to Jesus” meeting with Jack after his midterms came out, he told us he really did not want to return to college and instead wanted to get a job. I thought to myself, this kid has been in school since he was 3 and he is now 21, who could blame him for wanting to get out from behind the desk.
The Road to Employment is a Long One
Once that decision was made, we contacted the Bureau of Vocational Rehab, which is the agency in our state that helps people with disabilities get employment. We thought we had a leg up since Jack had worked the past six summers at an amusement park in food service. He had basic solid work skills, was never late or missed a day and most importantly he is a people pleaser and wants to do well. He also obtained his driver’s license at age 20 and had reliable transportation. My husband and I thought, “Who would not want him to work for them?” We found out many were not willing to give him a shot. My advice to parents of children with a disability is to not wait until they are 18 to get a job: The earlier the better.
Our first step was a lengthy three month evaluation of his skills and a few job tryouts at local businesses (mostly non-profit) that bring people in to give them a work try-out. We then received a report on where his strengths lay and for what types of jobs he would be suited. Not surprising to us, he tested high for small parts assembly. Jack has always loved puzzles and so that made sense to us. Also not surprising were the recommended jobs: cleaning, stocking shelves and restaurant kitchen work, washing dishes, etc. These jobs are so typical for people with disabilities. I want to be clear here that I think all jobs have dignity and we are all not above cleaning up after ourselves or others. My challenge is that I felt Jack could do so much more and we were only looking at the low hanging fruit. As I said, he is a people pleaser and wants to do well, so any suggestion the job developer came up with was one Jack said yes to. I think the first jobs that were suggested were cleaning restrooms. His job developer and I had many discussions around this, some were tense.
Pounding the Pavement
Working with BVR was a slightly better than working with our son on our own. The job developer worked with Jack one day a week for 1.5 hours. I am sure there were phone calls that the developer made at other times as well, but what came back to me was that if you do not have a job, you should be working 40 hours per week trying to get one. Jack could not do this on his own and my husband has a full time job and I have an app business and insurance brokerage business. Running two businesses, having a 17 year old daughter, and trying to get our son a job was putting me over the edge.
Patience has never been my strong suit, so I decided to take Jack on some drop-in job calls and to a few job fairs in addition to what the job developer was doing. My husband also took him to some weekend job fairs. The reactions were good with most, but you can tell when you are getting lip service and when someone is genuine. Most were lip service.
One company job fair, was really pathetic. We approached the human resources table and let Jack introduce himself and tell them specifically that he was looking for a parts assembly job and that was one of the jobs listed in the newspaper for this company. The man behind the table was flustered after Jack disclosed he had autism. Some say we should hold back that information, our feeling is to fully disclose it up front so they don’t think he has something else. The man directed us to a woman who was the HR director. Her first question was, did he drive a tow motor? I stepped in at that point and mentioned the parts assembly job in the newspaper. Taking a look around the room, my thought was that none of these other guys can drive a tow motor either. This is judgmental, but let’s face it, most of us are judgmental in one way or another. Many of the other applicants looked like they just rolled out of bed, needed a shave and a haircut and spent way too much on body ink. This was clearly her way of eliminating him from the prospect of a job at this company. She then went right to him cleaning restrooms and to complete an application. We left with one thought in mind, this company missed out on a great hire!
The Right Place at the Right Time
On one of our days out job searching, we happened upon a company I had read about in the newspaper. It was woman-owned, they were close by and it looked like a job situation that would fit for Jack. We stopped in and met the manager, a woman who did not completely flip out when Jack went into his talk about working six years at an amusement park and how reliable he was and that he had Asperger’s. She said she would talk to the owner and I said his job developer would be back in touch. It took a few weeks, but Jack is now an employee for Sweaty Bands, a company that makes fitness and custom headbands for females. Sweaty Bands was featured on the “Today Show” and has been picked up by Nordstrom and many other fine specialty and fitness stores. For now, Jack helps with packaging, and I hope they will advance him to fulfilling internet orders. This is his first full-time job and I hope he keeps it for a many years. There are many internet fulfillment companies in our area; our hope is that Jack can establish a career in this industry. We are grateful to Sweaty Bands for giving him a chance and I hope they hire other people with disabilities in the future. Please support them at www.sweatybands.com.
Therese Wantuch developed an app for individuals with autism called “Training Faces” www.trainingwithgaming.com and also runs the website www.healthcareclaimhelp.com
I came across this epiphany recently on people with disabilities and their relationships in the community. I rarely use the word “epiphany”, but I think it fits here. The sad thing is, it is so transparent, but we rarely see things staring us in the face. You be the judge.
In 1992 Jack Pealer, a disability advocate in southwestern Ohio asked 51 people with disabilities one simple question. Who is in your life?
What he found on average, the respondents had:
· 8 family member in their lives
· 25 paid human service professionals
· 2 friends without disabilities
· 3 other citizens without disabilities…neighbor, postal worker
· 68 other people with disabilities
20 years later, we speak with families and we ask them if this represents their child’s life and they just nod their heads and say “yes”.
20 years later the same results. Nothing has changed. Their lives are full of other people with disabilities and paid service professionals, few friends or even acquaintances. How does this compare with the lives of most other people?
Most of us have family members, maybe eight or less. Many of us have paid people in our lives with the major difference that those paid people do things we want them to do, mow our lawn, clean our gutters with the main difference, we have the control. Folks with disability do not have that control. With the people I pay, I can hire and fire at will, with a person with a disability; they may not have a voice in who works with them, provides essential services for them or if they even like them.
For most people this dynamic is filled with a plethora of different people. Close friends, aquanticnces, people we work with or used to work with, people we know at the gym or bar or organization where we like to spend our time. For folks with a disability, that is two people at best.
You can be the solution, don’t wait until January to make a resolution to have one friend with a disability. Now this friend should have the same interests as you, maybe its movies, trains, bowling, a basketball game, the important thing is to get out of your comfort zone and be the change agent you can be.
Please read this blog to see the graph and be the solution.