The Autism Community - The Great Divide

I was going to write about research in autism, but that got me thinking about the great divide in the autism community. What is the great divide? I should correctly say, what isn't the great divide in the autism community? I have friends who vaccinate their children, and I have friends who choose not to vaccinate their children. I have friends whose children receive ABA therapy, and I have friends whose children utilize other forms of therapy and other programs. I have friends whose children are on a gluten-free and caseine-free diet, and I have friends whose children aren't on a particular diet.

What I don't understand is this: why can't we all just get along? What happened to respecting other's opinions when it doesn't agree with our own? Why can we not say how we feel without being personally attacked for saying so? When did it become ok to belittle someone for not going along with the crowd?

I have an extremely diverse group of family, friends, coworkers, and acquaintances. I know we don't all agree on every single subject. One thing I do know is that I respect their opinions and they respect mine. I'm hopeful that at some point in the future, the autism community can find the common respect and close the great divide that is so rampant now. I'm hopeful that everyone in the autism community can say how they feel without and resulting personal attacks.

Am I Pollyana? No, but I am an autism mom, and as such I must remain hopeful for a more peaceful future for my children. There is no other way.

Nonprofit Profile: Families With ASD

Families With ASD is a 501 (c) 3 nonprofit located in Milford, Ohio. They started out simply as a meeting of parents of children who have autism. They are now a top local nonprofit serving over 500 families in the Greater Cincinnati/Northern Kentucky area. All of Families With ASD services are FREE, and include the following: Autism and ALL Special Needs Expo, Autism Yellow Pages, and many FREE events throughout the year. This nonprofit has no paid staff and doesn't accept any government funding.

The Autism and ALL Special Needs Expo is offered yearly, and it gives local parents, family members, first responders, teachers and many others a chance to come learn more about autism and other disabilities and how best to get support and education. Average annual attendance at this event is more than 5,000.

The Autism Yellow Pages is a trusted local resource that lists doctors, therapists, service providers and other local organization who offer services to those on the autism spectrum and other disabilities. It has a wide variety of listings, both local and national.

Upcoming FREE services offered by Families With ASD include Bingo and Taco Night, Special Needs Skate Night, Autism & ALL Special Needs Expo, and an outing to the Drake Planetarium.

Families With ASD closed their Autism Resource Center on December 31, 2014 in order to allow for funds to be put toward the Luke Gregory Center. The Luke Gregory Center is a goal of Julia and Greg Smith, the parents of four children, including the namesake of the center, Luke Gregory Smith. A GoFundMe page has been set up to allow for donations to make the Luke Gregory Center a reality in the near future. Please consider making a donation: www.gofundme.com/LukeGregoryCenter.

Autism and Emotion

It's been said that those with autism have a difficult time expressing their emotions. While this is true, it's also true that there is no greater joy than that of a parent of a child or adult with autism who has been able to capture an expression of true joy from their child or adult on film. I included a picture of my daughter Shelby with one of two pictures I have of her expressing true joy.

The picture at the top of this page was taken by Ashley Fehler of Ashley Fehler Photography in the spring of 2011 as a group of photos I had taken for my husband for Father's Day that year. I racked my brain trying to think of a way to get a true smile from my Shelby girl. And then it hit me: Shelby laughs every time someone sneezes. So I pretended to sneeze. And boy did she laugh and smile. I almost cried when I saw the pictures. As I mentioned previously, this is one of two pictures that have been taken of Shelby with a real, true smile.

That being said, I strive every day to see a smile like this again.

Strength

Strength can be many things. It can be choosing to walk away from a situation, or it can smiling in the face of adversity. As the parent of a teen with autism, I chose to be strong in many situations. Yet my strength is nothing compared to that of my teen with autism, Shelby.

Shelby loves unconditionally, even when it seems like she shouldn't. I'll never forget when she was kicked out of school in the middle of the school day in the middle of the school year. I was devastated, and I guess I thought she would be too. When I told her she wouldn't be going to back to school, Shelby looked at me and said, "Guess that means I won't be missing El Tigre today." El Tigre was her former favorite cartoon to watch on Nickelodeon. When I explained to her I meant that she wouldn't be going back to that school ever again, Shelby's reply was shocking. She looked at me and said, "Well, guess that means no more homework for me." Could I love this kid anymore?

And then there's that time when an adult man walked up to Shelby at a jumping play center and said, "Pull up your pants you fat retard, no one wants to see you butt." She doesn't like to wear belts. This sometimes results in loose pants. I try a subtle reminder and tell Shelby "piggy bank" when I notice.
It wasn't Shelby who told me the man had said to her, it was her friend from her new school, Ryan. I didn't know whether to cry or be angry knowing what that man had said to my child. I'll never forget walking up to every adult man in that play center and asking him if he was the one who had been mean to my child. It wasn't until we were halfway home that Shelby finally told me who had been mean to her: the man in the Pete Rose t-shirt. You see, she was protecting not only me from getting in a confrontation with the man, but also the very man who had insulted her. To me, that is true strength.

So for my Shelby girl who struggles on a daily basis with the various challenges that come with having autism, I dedicate a quote from the great Christopher Reeve, "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles."

Alternatives to Public Schools in Ohio: Options

Parents of school-age students in the State of Ohio have several alternatives to public schools for their children. There are four scholarships available, each with different qualifying criteria.

One option is the Autism Scholarship Program. A child must be at least three years old in order to be eligible. Other requirements include the recognition of autism by the school district  and an established IEP with the school district of residence.

A second option is the EdChoice Scholarship Program. A child must be assigned to an EdChoice-eligible school. Other requirements include the student must be 5 years old by January 1, 2016. Even with this requirement, the student must either be assigned to an EdChoice-eligible school or meet low income requirements. Additional criteria can be found on the EdChoice Scholarship website.

A third option is the Jon Peterson Scholarship Program. A child must be identified by the school district of residence as having a disability. An established IEP  that is recognized by the school district of residence is also a requirement.

A fourth option is the Cleveland Scholarship Program. In order to be eligible for this program, a student must be currently enrolled in the Cleveland Municipal School District. A student must also be going into kindergarten thru 12th grade.

Research your student with disability's right to a free appropriate public education by reading Whose IDEA is This? Additional information on IEP's can be found at WrightsLaw.

Comforting Ties Autism Support Group - Upcoming Meetings

There will be meetings in Erlanger, KY; as well as in Cincinnati, OH. I'm also looking at adding a meeting for the Fairfield area, if the need is there. The upcoming meetings are as follows: August 18, 2013 at the Kenton County Library from 1-3PM; August 24, 2013 at the Covedale Library from 4-6 PM; September 15, 2013 at the Kenton County Library; and September 21, 2013 at the Covedale Library. Please also feel free to visit the Comforting Ties page on Facebook , or on LinkedIn.

Conflict Resolution

Debbie Lorence, from the University of Louisville's Kentucky Autism Training Center, gave a handout on managing family stress that I thought may help:

I will try not to avoid conflict altogether - instead, I will try to not let the little things that bother me BUILD UP until one of us explodes the issue into a large fight; I will try to talk about it with my partner within 48 hours, or let it go; I will try to set an appointment within the next 24 hours to have our discussion if my partner doesn't want to discuss the matter immediately.

I will try not become defensive - instead, I will try to listen and hear my partner out; I will try to address my partner's complaints with objectivity and with a willingness to understand; I will try to remain calm and in control of my emotions.

I will try not to overgeneralize - instead, I will try to lose the words "always" and "never"; I will try to avoid catastrophisizing; I will try to avoid the focus on isolated events and assuming all future events will be the same; I will try to stop and think if the things I am saying are really true.

I will try not to always be right - instead, I will try to stop looking at things as being "right" or "wrong" and that my opinions are always right and my partner's are wrong; I will try to recognize that sometimes two points of view are valid; I will try to look for effective ways to compromise; I will try to accept that my partners might have a different opinion that I do and that sometimes we might need to agree to disagree.

I will try not to read my partner's mind - instead, I will try to resist the idea that I "know" what my partner is thinking and that those thoughts are contrary to mine; I will try to avoid assigning motives to my partner's actions - "You are only saying/doing this because..."; I will try to avoid jumping to conclusions and hear my partner out.

I will try not to deny the positive - instead, I will try to refrain from holding the magnifying glass to the negative events while I dismiss the positive - for example, I will focus on the nine things that go right instead of the one thing that goes wrong; I will try to expect positive things to happen rather than thinking of positive things as flukes - this will help me to eliminate those "Yeah, but...." responses when my partner proposes a solution to a problem.

I will try not to forget to listen - instead, I will try to listen carefully - don't think about what I am going to say next while my partner is talking; I will try to reflect back what my partner is saying so he/she feels heard; I will try to avoid interrupting; I will try to look at my partner when we are having a conversation and pay attention to his/her body language; I will try to use "I" statements instead of "You" statements.

I will try not to play the "Blame Game" - instead, I will try to refrain from criticizing and blaming others for the situation; I will try to avoid trying to "shame" my partner as being "at fault"; I will try to use the opportunity to analyze the situation objectively, assess the needs of both parties, and try to reach a solution that helps both of us; I will try to refrain from personalizing my stressors - blaming myself for things over which I have no control creates more stress for me.

I will try not to always feel I need to "win" - instead, I will try to come to a resolution and a mutual understanding that respects the needs of both of us; I will try to not discount my partner's thoughts and get stuck in my own point of view; I will try to look for ways to compromise. Health communication involves finding a resolution that both parties can be happy with.

I will try not make character attacks - instead, we will try to avoid calling each other names; we will refrain from blaming one another or make accusations; I will try to respect my partner even if I don't like his/her ideas or behavior; I will try to avoid bringing up past conflicts to throw the discussion off-topic.

I will try not to "own" my stuff - instead, I will try to accept my own responsibility for the situation - this causes long-term problems because the situation won't get any better; I will try to avoid engaging in finger-pointing and acknowledge my own thoughts and feelings.