A Mom's Wish for Inclusion and Understanding
By Heidi Brewton
My wish for the New Year:
I never have been a person to write Christmas letters telling what my family did this year. I have decided, however, to ask that you help me make my New Years Wish for 2010 come true. You see, it will take many people changing their mindset for this to happen.
There are many theories about Autism-what causes it, how it is viewed, how best to treat it, and so on. No one, including myself, has these answers. What I know for sure, though, is that Autism is a disability, and a disability, and having a disability makes you different form the rest of society. I have found, when looking back over my life, that I have learned the most from the people who were the least like me. So far, the people who top that list are the people I know with disabilities. They, as well as their parents, are faced with fighting for things that the rest of society takes for granted. Attending their home school right down the street, receiving a free and appropriate education-these are things that are not taken for granted and are not a given.
For example, most people do not want a child in a Sunday school class who “stims” or is too loud. The Sunday school teachers fee l(and other parents feel) that will distract the other children. I have found that when you explain to young children ways to help a child with a disability, they are often very interested in doing so. It is usually the adults who do not want to disrupt their quiet predictable hour. However, learning to help others and tolerate differences is a very Christian attitude. So it seems doubly sad that many people with a child with disabilities do not feel welcome in church.
Having a son with a disability has taught me so much- more than any other experience in my life. It has changed my views on just about everything. Autism has given me a passion for rights regarding all people with disabilities and a appreciation for all those who have walked this path before me. When I see a wheel chair ramp, I am reminded that the people who need these did not always have access to them. Someone had to get loud and fight to make it a law. I am betting it was a MOM!
I have volunteered at my son’s school where there are kids with cognitive and physical disabilities. There also some "typical" kids. It is sad and pathetic to see adults stare at a 5 year old using a walker on a class field trip. These people are staring because they are not exposed to disabilities and never have been. Our society is so screwed up. We hide our kids with autism in all ASD class, because even if we want to mainstream, we must fight a never ending battle with the school. Or the kids with CP and Downs, they get carted off down the hall too, to a VE class. You may grow up never really knowing a person with disabilities as a real person. That is just wrong. Our kids have the right to be out in public and belong, and it starts when they and their peers are young. ALL kids have this right. It is NOT a privilege.
What is my wish for the New Year? That when you see a person with a disability, you will treat them with the respect and dignity they deserve. That you will not take your own abilities for granted, but also not judge others who appear to not have the same abilities you have. We can all learn a lot from those who are different from ourselves.
Heidi Brewton is a mom to an amazing boy who has autism. And also has 2 other incredible kids! She is married and works part time for a not for profit autism organization.
i have a teenage boy who is trying so hard to fit into youth group and as a parent im getting frustrated because of all the places you would think church he would not have to work so hard to fit in im going to take the month of april to ask the paster to learn about autism hopefully with understanding will come acceptance.
Posted by: becky conger | March 31, 2013 at 07:36 PM
This post reminds me of a nagging feeling I have had lately of a friend whose child recently got pulled (forced) out of the mainstream. This little girl was friends and classmates with my daughter since preschool, they are now 10. I was so upset by the schools forcing this child to be in a special ed class. She is distractible and she's not on grade level, but she certainly should be with typical peers. How can I be expected to teach my daughter about people with disabilities when the schools (where she has her peers!) continues to force these kids into isolation? It disgusts me that this continues despite laws that say otherwise!
Don't even get me started on church. We can no longer attend church as a family because of autism. Yet another thing that was stolen from us. I was angry at others (in church) at first and wanted to give them a whatfor and yell to mind their own business- he's disabled! One time, I got a particularly long, rude stare from an old guy and then after church the same guy was collecting for knights of columbus tootsie roll drive- no kidding! Now, church truly is not an option because my son will freak out screaming with no apparent trigger and no warning. Somehow when he was 2 and I could tuck him under my arm and run for the door this was a little bit more acceptable than my growing 5 year old yelling out and making autism noises. Though I have been tempted to bring him just to make others uncomfortable and squirmy. Too much stress for me though.
Posted by: Kristine | January 11, 2010 at 12:38 AM
What a wonderful post and fantastic wish! Well-written.
Posted by: Sherry @ EX Marks the Spot | January 10, 2010 at 10:04 PM
I have to give some members of my parish an A for effort, but they really don't get it. When it was time for my daughter to start religious education classes in preparation for First Communion, the director found a volunteer to work with her one-on-one. The volunteer was a wonderful kind-hearted woman who also worked as a paraprofessional in an autistic support classroom. Unfortunately she was employed by our school district, the one I had to remove my daughter from. That is where she got all her training on autism. Worse still, there was another volunteer who occasionally worked with my daughter. Later, she was hired as the autistic support teacher at my daughter's school and is the one who threw my daughter into the seclusion room. These are the things I try not to think about when I'm at Mass. I try not to look at the little girl who bullied her at school or her equally unpleasant mother. I also try not to think about the children in the parish who have wanted to play with my daughter but whose mothers wouldn't allow them to because my daughter has autism. I don't bother looking for another parish because I don't have any reason to believe it's going to be any different anywhere else. I am grateful for the pastor who is wonderful with all children, as well as some of the older parishioners who are genuinely kind, but I just have to stop thinking of the parish as a place where our family can get any real fellowship and support. It doesn't affect my faith in God. It's just one more way that autism isolates my entire family.
Posted by: PhillyLisa | January 10, 2010 at 01:36 PM
Thank you so much for your post! As a minister's wife with a child with autism, I have become all to aware of how hard it is to attend church. I often come home afterwards with tears in my eyes. Even ahead of recovery, my number #1 prayer is that my son will connect with his Creator!
Also, I wanted to mention what inclusion has done for my son, actually our entire family. Early in November I asked my school district to consider moving my son out of the MH classroom at a neighboring school. He needed to with the children that he would see at t-ball and on the soccer field. He needed to be with his three siblings, he needed challenged. The school agreed and in just two months, he has gone from simply copying his name to doing 100% of typical first grade work!! He has an aid but is known by nearly every staff member of the school. Everywhere we go, children and adults are waving to him. He knows everyone by name and greets them. The same kids who stared at him as he ran out onto the soccer field last summer are welcoming him to the classroom in the morning. Two months and not only has he blossomed, he has touched so many. I am eternally grateful for a school who was open to doing this for the first time!! I now would fight for inclusion with every bit of my strength!! I feel so blessed! Thanks again for sharing!!
Posted by: Christy Will | January 09, 2010 at 11:29 PM
Heidi, Thank you for writing this. It hits home to me on so many levels. Children should not have to earn the right to receive the same education as their typical peers. My son has Autism and I became an advocate to try to help all children in the educational forum and am always shocked at the work required just to get a kid into the class he or she would have been in all alone minus Autism. My son is still only permitted to attend the typical classroom half a day and its only if his behavior is close to 100% perfect for extended periods of time - it is a constant ongoing struggle to arrange meetings, collect data, get evaluations and constantly fight for his rights, the rights that so many others take for granted.
Never give up, never surrender.
Posted by: Lisa Brown | January 09, 2010 at 09:32 PM
Today on Fox News live they had a doctor on Dr. Ligh Vinocur.
She said that there are clusters of autism among college educated people.
So that means: That college educated people are noticing their children are not talking, not potty training, not making eye contact, and such while the rest of the population do not notice. So, she says that many are and have been falling through the cracks, and this has probably been going on for while.
I wrote them and told them that is because the college educated people believed, and trusted in their education. --- And we were rewarded/punished for putting our faith in institutions instead of actually thinking for ourselves.
Posted by: Benedetta | January 09, 2010 at 05:22 PM
Cynthia you are so right. I know the first year I never really said anything to anybody outside my family about autism, we went out but I never said anything. Now at playgrounds and places where moms and dads are with their kids we will speak up (mostly to explain behavior) non-apologetically to tell them Ben has been diagnosed with autism.
Posted by: bensmyson | January 09, 2010 at 05:13 PM
bensmyson: "... it is invisible to many people. I call it an invisidisability."
Yes, autism is the "invisible" disability because so many of our children look normal. If they were in a wheelchair, people would understand that much more than "behaviors."
The other invisibility is that these children are hidden away at home. Being out with them is sometimes next to IMPOSSIBLE. If it is common as red hair, then where are all the kids? I used to be able to spot them easily because of my experience. With the numbers going up, it should be even easier. But one of the aspects of this sad story is isolation. I'm sure many of them are at home with someone else.
Posted by: Cynthia Cournoyer | January 09, 2010 at 02:35 PM
This article is what ND is all about, sans the rhetoric on vaccines, which in all actuality has very little to do with true ND.
Posted by: Kent Adams | January 09, 2010 at 02:01 PM
"I have learned the most from the people who were least like me." I love that; it's so true!
Posted by: jen | January 09, 2010 at 01:37 PM
This is a beautifully written article, Heidi. I have witnessed what sonthamusic has spoken about - regarding people who can't eat certain things because of health issues -many times. I've heard people say "oh, come on, you can have some. A little won't hurt" and the like.
Having a child and other relatives and friends with physical and developmental disabilities has most certainly taught me not to take anything forgranted. It is so sad to see children sent to a classroom "down the hall" or "across town" where they cannot get a chance to socialize with their NT peers. This antiquated practice does a disservice to both NT and children with disabilities.
I am having issues with my congregation, so don't get me started on churches and inclusion. I could write volumes. I do salute the local minister - a compassionate man of wisdom - who started a service for children with autism and their families so they could worship in comfort, without the stares from others. God bless him.
Posted by: mary peck | January 09, 2010 at 12:53 PM
Hello Heidi, You have motivated my family to go to church tomorrow!
I have mixed feelings about social inclusion. There are things about mainstream USA society that I don’t like. For example, the food items at social gatherings. I’ve already been miffed by the question, “Why can’t you eat like we do?” Then, if I bring a dish that’s gluten free casein free to a gathering, the group is afraid to try it! We still try to go anyway.
What I frequently observe at social gatherings, is that the veggie tray is the leftover while the brownies and junk food are all gone!
I am hoping to teach my child that different doesn’t mean bad, different just means different. I am hoping that my child will have a strong enough positive belief system and feel confident, no matter how society reacts. I am proud of my child for choosing carrots and cucumbers in a fast food world!
Posted by: sonthamusic | January 09, 2010 at 11:16 AM
As a Sunday School teacher myself (though I've not yet been faced with having a disabled child in my class in our tiny church), I would love to accomodate an autistic child, but I would feel so ignorant of how to do that right. Thanks for your article; if an autistic child were to come to our church, I'll try to ask his/her parents to help me in class for a few weeks to train me how to train the other children (and myself) to best include and encourage them all.
Posted by: Michelle G. | January 09, 2010 at 11:16 AM
We fail all of our children when we do not show them how to live with, work with and appreciate people of varying abilities and diverse backgrounds.
Posted by: Maria Durci | January 09, 2010 at 08:59 AM
Love that verse from the Bible, Bensmyson. Very appropriate.
Posted by: Parent | January 09, 2010 at 08:13 AM
"Autism has given me a passion for rights regarding all people with disabilities and a appreciation for all those who have walked this path before me."
Not that my heart was changed in a dramatic way as it relates to the disabled. But I never really noticed it as much. Even those in wheelchairs or the wheelchair ramps. But it's like being pregnant, once you're pregnant it seems everyone else is pregnant too.
Autism doesn't have the wheelchair ramps or the walkers or physical characteristics of a disorder such as Downs, it is invisible to many people. I call it an invisidisability.
I love what someone said a while back on the release of the CDC numbers, "autism now is as common as red hair," if true it is exactly the kind of imagery that needs to be out there in the public eye. If only our children had red hair or wore red shirts or could be seen then one in 100 might be a little more visible.
BTW the Sunday School comment is a similar experience here as well. I long for the day when the churches take up the challenges facing our community as it regards to this epidemic. There are good, loving people in these houses of worship with an abundance of resources and there is a huge opportunity to serve that they are ignoring. Putting ideology aside these organizations have their fingers in every political circle, local, state and federal, they have a network that reaches globally, they have physical structures in place, a desire and mindset structured to help and yet many of them have repeatedly told me they are "not set up to accommodate" children with autism.
Then were there brought unto him little children, that he should put his hands on them, and pray: and the disciples rebuked them.
But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven. Matt 19:14
Posted by: bensmyson | January 09, 2010 at 07:50 AM