Wednesday, November 14, 2007

Beyond FASCINATING: Fabulous Feedback from Moms in the Know

My first attempt at a blogging survey resulted in a terrific array of insightful reactions and answers primarily from moms of children with autism. Rather than try to summarize this feedback, I’ve pulled quotes that I believe represent general points made throughout the comment thread. To attach quotes to names, please see the comments section.

I’d like to acknowledge everyone who participated and thank her (again!) for her input. I’ve learned so much through this experience and believe future BEYOND Understanding visitors will, too. MANY thanks to:

Kyra

Marla Fauchier Baltes at Marla Baltes

Kristen at From Here to There and Back

Brian** via Estee Klar-Wolfond’s The Joy of Autism

NiksMom at Maternal Instincts

Jen P at Find Out What Jen Finds

Mom to JBG at HoopDeeDoo

Ginger Taylor (who responded with an enthusiastic e-mail when I was still bouncing this idea around) at Adventures in Autism. This post from Ginger’s spring series “Autism in God’s Economy” offers even more insight into how much the help of family, friends, neighbors, etc. really does make a difference.

Sherry at Sage and Thyme for her kind words of encouragement.

And now for the Q&A:

What are the most hurtful misconceptions you run into on a regular basis?

“The most hurtful by far is that my child is assumed to be an undisciplined brat or bully who gets [neither] attention at home nor help with limits, how to take turns, share, and be kind-hearted. Little do these people know how MUCH time is spent with my guy on these very things and how much kindness and gentleness define his true nature. Little do they know that the difficult behaviors have their origins in sensory processing issues, developmental delays (such as a) lack of neural connections, complexity, and the lack of dynamic intelligence and the ability to perform all sorts of lightening-fast information processing.”

“The most common misconception about my child is that he would be socialized if only he were in school, that an ability to self-regulate, co-regulate, read and interpret body language, and navigate the complex world of social interaction is something that he would simply ‘pick up’ through osmosis. In the typical world, that’s true, but not so for those with Autism Spectrum Disorder (ASD).”

“Most hurtful is the misconception people have that because my son doesn’t speak and acts in many ways like a much younger child…that he is mentally retarded and doesn’t understand what is being said to him or about him. [He may not] at this particular age…but he is…frighteningly smart and takes in everything.”

“The most hurtful misconceptions you run into on a regular basis? The lumping/stereotyping. I had a school director say something like ‘we’ve dealt with children like this before but (they weren’t) violent.’ So it is hurtful when others see (my son) as a demon child…. For a flipside view, for those teachers (such as at church or…preschool) who are aware and sensitive to the issue, they go a little overboard regarding his disabilities versus abilities and let him get away with everything and change things around for him, taking away the structure that he needs which can very well lead to further issues. It’s almost like they don’t expect much out of him. This breaks my heart because he is brilliant, but can’t communicate that.”

If you could explain one thing to the general public about autism in general or your child/family in particular, what would it be?

“If I could explain one thing about autism it would be this: Autism is as varied and unique as each life that it touches. There are common threads, but most of the time ASD manifests itself in unique and surprising ways. And not all of it is bad. Or needs to be fixed. Or changed.”

“[I’d explain] that my autistic child’s sensory issues or developmental challenges are not going to be the same as the next child and theirs won’t be the same as the next one. And not every child responds to the same type of ‘intervention/therapy/medication/biomed/nutritional/treatment of the month’ as others.”

“I'd explain…that even though my boys are still largely non-verbal, they enjoy Sesame Street, Barney, etc. and have much in common with other kids their age.”

“[I’d explain that my son] is extremely social as long as he is comfortable and that he gets very easily overwhelmed.”

“[I’d explain] that schedules are often changed at the last minute and often getting together is more difficult to arrange. It is just the way for our family. If (my daughter) has a seizure we may have to cancel at the very last minute.”

“[I’d explain] that the stresses on a family dealing with autism are enormous and often hard to see on the surface; that these families often feel isolated and stretched; that these families experience all the same feelings of that those with typical kids feel—worry, hope, concern, pride, admiration, irritation, boredom, elation, etc.—mixed with some monumental concerns about their children’s ability to make their own way in the world, make meaningful connections and have meaningful work; that often the concerns are more simple and profound: What will happen to my child when I die? Who will look out for him like I do? With MY eyes, the ones that SEE his beauty, his worth, his value, his potential, even if he utters not a single word and behaves in ways that people can’t understand or don’t want to take the time to understand?”

How do most people treat your child in public, and how would you prefer to see your child treated?

“…People treat (my son) as they would any other kid most of the time because his disability is largely invisible unless he’s triggered (and then can yell or push or throw things or act floppy and fall down or lick things inappropriately) or overwhelmed in a setting with too many people or struggling to find his way ‘in’ with other kids and then he can be treated with impatience and fear and judgment. Some parents look sideways at me and usher their children away.”

“Most people don’t know in the general public because it IS hidden until it is triggered. I want to see my child treated like (any child his age). He wants friends too, he just doesn’t know how yet.”

“Sometimes people treat (my son) like he’s a kewpie doll and they want to touch him or they talk baby talk to him. Or worse, they keep repeating themselves over and over and over waiting for him to respond. When he doesn’t respond, they ask ‘Does he talk? How old is he? What’s wrong with him?’”

“Treat my child with the same dignity and respect with which you expect to be treated by everyone else.”

“Be nice. Have compassion for both the child and the parents. We are all doing the best that we can just like parents of typical children.”

“Have patience when conversing with my child. You really have to pay attention and listen to understand what he’s trying to convey. Rushing him makes it worse. And you can’t assume what he says is actually what he means, so repeating what he says and asking confirming or yes/no questions can really help you dig down to the root of the topic of conversation. Treat him with love and friendliness even if he doesn’t reciprocate it and don’t take it personally.”

“I wish parents would take more time to discuss communication differences among children and people. If it takes someone longer to find her words or if she doesn’t communicate in the same way other children do it does not mean she is any less important. That person still has something to say.

If your child were to act out in public, would you prefer strangers ignore the behavior or offer to help in some way?

“I'm concerned about doing what is best for my child and if (that means) picking him up and throwing him over my shoulder so he doesn’t kick me and walking him out of an over-stimulating store, then that is what I have to do. I can’t spend time to stress over what people think. I’m happy knowing that I know what is best for him and I try my best to do that daily. I pray that other people understand and can empathize with me, but I can’t rely on that for solace, only that I’m doing the best that I can.”

“I would prefer someone look me in the eye and say, ‘man, we’ve all been there’ or ‘boy, this same thing happened to me the other day’ or simply ‘hang in there, this too shall pass’ because, let’s face it, what parent hasn’t ever had to deal with a public scene of some sort. It’s all a matter of degree.”

“I would prefer if people would ask if there’s anything they can do. It helps break the isolation, the separateness. It helps unite us as part of one team, the humanity team. It takes the sting out. It says, I get it. I’ve been in sticky situations too. I know it will pass. Can I lend a hand in the meantime.”

“In public, I’d like a sympathetic smile or shrug. A sense of humor is what gets me through the public spectacles, and I’d rather share a friendly glance than see people trying their best to ignore the chaos of my family outings.”

Other Powerful Pointers:

“See all behavior as communication.”

“If you want to offer help then by all means do so. Most parents of autistic children are tired and could use a helping hand.”

“Not judging is good, too. Don’t assume that you have the answers as to why someone is autistic. Most people who have children with special needs have researched till they are sick of it and know way more on their child’s diagnosis/health concerns than they ever thought possible. It is not necessary for a friend or teacher or anyone to give advice unless it is asked for.”

“A family is a member of their community for their whole lives, and then suddenly becomes an outsider to that community when their child becomes autistic...but no one realizes it. The relationships just sort of dissolve and the autistic family becomes alienated from the community as a whole. The only relationships that are maintained are usually ones where the other party steps up and adapts. Even when the autistic family knows this is happening, it can be very difficult for them to ask others to adapt to the new paradigm they are living, and will probably always be living.”

“I found that once our son was diagnosed the decisions that we made no longer made sense to our friends who remained untouched by autism. The most frustrating part became answering the question, ‘Well why don’t you just _____?’ Because in their world, that is what they would do to tackle whatever challenge we were dealing with. I encourage friends of people with autistic children to…instead say, ‘What can I do to help?’ And then help.”

** While not a mom of a child with autism, Brian offered his take on this discussion from the point of view of a person with autism, adding an important dimension to the whole project:

“…Autistics, themselves, should never be excluded in discussions that could affect them for years to come—indeed, throughout their lifetime. The most common misconception I run into…is that only parents and professionals can, in any way, ‘understand’ autism, and that autistics, themselves, (can) not ‘understand’ what their life could be like. That is simply a false idea…..

“(Also) hurtful is the idea that an autistic person can simply admit that his/her behavior is not appropriate and take immediate remedial action to correct that behavior at that moment. … An autistic person cannot simply ‘behave’ himself or herself, as the underlying disability…is not subject to the whims and thoughts of the person, but is a far deeper issue (over) which that person has little or no control. Therefore, when an autistic person is chastised for behaving the way he or she does, that only makes the autistic more isolated and more withdrawn from others. It’s no wonder each autistic is characterized (as) ‘living in his/her own world.’”

“Mother and Son” oil painting © www.1koo.com

13 Comments:

Blogger kristen said...

Wow. When you put it all together like that, it paints a powerful picture, don't you think?

Thanks Karen, for showing an interest and for caring.

2:09 PM  
Blogger Sustenance Scout said...

I agree, Kristen! It really does paint a powerful picture. K.

2:23 PM  
Blogger Marla Fauchier Baltes said...

Karen-I love this post. You did an amazing job putting all of the information together. I am sure that took a lot of work. You should be very proud! I put a link to your blog on my side bar, please feel free to put mine in your list too. I would appreciate it! I will be mentioning your post in an upcoming blog. It is just so good. Thank you!

2:42 PM  
Anonymous -Brian- said...

Yes, the title of this blog, itself, "BEYOND Understanding" paints the most powerful picture, in that, when a parent says to an autistic child (or older person), "I just don't understand you!", that is not to be taken as a criticism, but as a compliment. Indeed, the more FASCINATING something is, the less it can be understood, but still accepted and appreciated--like when something touches you far deeper than you can comprehend.

I met one person, years ago, who was fifty-three years senior to me, but the empathy was so strong between us. Not being related at all, we met as friends about twice a year, and the purely platonic interactions were so effortless and accepting. When this person passed away, I was notified immediately, and attended the funeral. A few months later, I got a note from a lawyer that this person had willed two grand to me, which showed how deep acceptance can be experienced...

3:52 PM  
Blogger Sustenance Scout said...

Brian, What a great story. And I love exploring hidden meanings; thanks for revealing some from my own blog!

Marla, Thanks so much for your ecouragement. I always forget to follow up posts with links in my sidebar; thanks for the reminder! I'll add links to all the sites noted right after my third-grader wraps up her Native American report and project tonight, both of which (of course) are due tomorrow. Crazy!

4:19 PM  
Blogger Jen P said...

Do you know how much it means that you took the time to do this?? *sniff*

5:20 PM  
Blogger Sherry said...

Karen, I thank you for this wonderful composite of opinions, ideas and the hope shared by parents of autistic children. It is remarkably moving. This in particular grabbed my soul:

"What will happen to my child when I die? Who will look out for him like I do? With MY eyes, the ones that SEE his beauty, his worth, his value, his potential, even if he utters not a single word and behaves in ways that people can’t understand or don’t want to take the time to understand?”

Incredibly, incredibly moving. As a mother I hear this and my heart goes out to any parent who is facing life with children who do not fit into the mold of the norm.

The elementary school my children attended has special needs programs. There was one boy there who is severely autistic. I did a great deal of volunteer work at the school and he recognized me. One day at recess he approached me as I was talking with some of the other mothers. He grabbed my arm and his grip was like iron. The other mothers "froze". I did not. I smiled, said hello and he just smiled at me with this huge grin. He spoke to me but it was all one word repeated over and over and it was not a word I'd want my children to say (!!). The other mothers were shocked by that and yet I smiled and just listened. The teacher appeared and took him away but I was never "frightened" by him. What I also noticed was the other children at the school, those not in the special program. They accepted all of these children in the playground and rose quickly to their defense should another student become aggressive. Our children often know more than we do.

Once again Karen thank you for this, for raising awareness and removing ignorance. And to all the parents who offered their thoughts, feelings and experiences, a very large thank you. Your children are blessed to have you as part of their lives.

7:00 PM  
Blogger Niksmom said...

Karen, thank you so very much for this. It was eye opening for me to read what other people wrote and to realize that, while many of our core struggles are the same, even our challenges are different...like those faced by our children. This would be incredible to have published somewhere for many, many others to see. You know, the ones that are not blog-literate!

8:49 PM  
Blogger Sustenance Scout said...

I so agree with you, Sherry, though each of these moms would insist they're just doing what they have to do. Great school story; I hope this post will help at least one reader think twice before freezing up when given the opportunity to talk to someone who's different for whatever reason. It's that tension that automatically communicates so much, isn't it? And yes, that one quote you mentioned just knocked me over. I highlighted it because I know it's an overarching concern for so many parents (including a friend of mine who's a single mom with a child with Down Syndrome).

Jen P, don't get me started! You should have seen me when I read all these responses. I know I've thanked everyone a zillion times but I doubt I'll ever say it enough. Over the course of just a few days this became such an important project for me and I'm still amazed at how responsive you've all been. I'm off now to add your sites to my sidebar of helpful blogs...they all certainly deserve to be there. K.

8:56 PM  
Blogger Sustenance Scout said...

Niksmom, I'm so pleased that parents who participated are finding the overview of the survey enlightening. I agree this is worthy of broader attention and am already brainstorming some ideas. I'll be sure to keep you posted! K.

9:24 PM  
Blogger Jenn said...

Wow, this was a great post. It really means a lot to me that you took the time to do this!

9:46 PM  
Blogger misha_k said...

What you've done here is such a wonderful thing. It's so nice to see the comments of all these moms. You've presented a very powerful picture of a life I'm also a part of. I too have my struggles, as does my son, but it's moving and helpful to see I'm not alone. We all have something in common. Thank you for showing that.

I'm adding a link to your blog and this entry in particular. I'm glad I found my way here.

10:19 PM  
Blogger Sustenance Scout said...

Thanks, Jenn!

Misha, I'm glad you found your way here, too. Thanks for your note...and for the link! K.

2:19 PM  

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