Friday, January 30, 2015

Heckling Muslim schoolchildren? Faith is NOT supposed to be synonymous with hate!

I was saddened (and angered) to read this disturbing news: that recently a group of approximately 20 "Christian" Texans called the "Patriot Defense Foundation, Inc" decided to harass another group of Texans who are Muslim.  The Muslim group traveled to the Texas capitol (Austin) for a Texas Muslim Capitol Day legislative advocacy event coordinated by the Texas chapter of the Council on American-Islamic Relations (CAIR). Many different groups host similar events; there are advocacy days sponsored by several different groups nearly every week during the Texas legislative session. This particular group consisted of a number of university students as well as families with young children and faith leaders.


It is hurtful to rehash the events that occurred that day, as they were cruel, bigoted, and completely unprovoked. The highlights include comparing the Muslim participants to Nazis, insulting the group during prayer, and uttering loud shouts and insults to interrupt a group of children who were singing "The Star-Spangled Banner" (the US National Anthem)!


While I'm sure that any Christian - any HUMAN - reading this is as horrified about this as I am, apparently at least one notable person seemingly agrees with this hate group masquerading as a Christian patriotic group...none other than Texas Representative Molly White. The Republican official left a message on her Facebook page that though she would not be in attendance at the protest, she intended to “leave an Israeli flag on the reception desk in my office with instructions to staff to ask representatives from the Muslim community to renounce Islamic terrorist groups and publicly announce allegiance to America and our laws.”


I am glad that the Texas Speaker of the House and the Texas Governor voiced their support for ALL Texans and condemned the protesters. But that is not enough. Representative White's words and actions were unacceptable and need to be formally addressed and corrected through the proper channels built into our system. There is no room for anti-Islamic views in our state leadership, none.  I am a woman of color; I know what it's like to be discriminated against.  I will not implicitly support someone else doing the same. And I believe that she needs to publicly apologize to the group for her remarks as well, as she was very insulting and discriminatory.


But beyond that, it is not just Representative White who has a responsibility to right these wrongs. I am calling on my fellow Christian brothers and sisters too. We cannot be silent while such loathsome hate is committed under the name of "Christianity." That crap is NOT Christianity. Silence = acceptance; that's how it is perceived even if that is not what you feel about it.  In the spirit of 1 Thessalonians 4:1 we need to act. We need to reach out and correct this wrong.  And now.



I am providing the contact info for CAIR Texas, which is based in Houston. They organized the trip and would know how to forward messages to the attendees. Let's show these individuals - our fellow Texans - some REAL Christian fellowship and support. Send a brief message of encouragement and some words demonstrating solidarity with them, and support. Denounce the hateful acts of the protesters. Help to heal the wound that they created. It only takes a moment to send an email! (Of course, you could send a snail mail letter too; that would be nice. But an email will suffice!)

The email address is: info@cairhouston.org

The address is:

Council on American-Islamic Relations
Texas Chapter, Houston Office
5445 Almeda Rd, Suite 301
Houston, TX 77004

And if you're on FB, you can leave a message of goodwill on the CAIR Texas page here.

I'm about to draft a short message of support now, before I drift off to sleep. You can do the same! Please give it a thought (or several thoughts); it's the loving, ethical, and Christian thing to do!





Thursday, January 22, 2015

Autism, Therapies and Acceptance: A Mother’s Perspective

(This is also cross-posted on the Autism Women's Network blog, available HERE.)

Long before the day we received a formal autism diagnosis, I already knew my daughter was Autistic. However, I hadn’t picked it up at first – not because the signs weren’t there, because they were, but because I didn’t see anything problematic in those signs. She was a lot like the way I was as a child and also in some ways similar to me even in adulthood. For the most part, I understood her, and even the areas that I didn’t understand didn’t alarm me. I figured she had her reasons, and if she was content I should be too.  (I know this is not typical of everyone; this is simply my experience.)
It was only when I enrolled her at 2 years old in a part-time Mothers’ Day Out program that the differences between my child and others her age were pointed out to me, by the program staff. Not understanding what they were getting at, I decided to come on a few different occasions and observe the class through the window to try to understand. In doing so, for the first time I saw my daughter through their eyes. And it was glaringly obvious at that moment that she was  indeed different.
I went home and took to the internet to try to figure things out. It didn’t take very long to determine what I saw: autism. I read thoroughly through the DSM-IV as well as a host of other articles. And then I visited several other websites, as well as forums and blogs. For several weeks I spent nearly every spare moment I had online, often awake until 3 or 4 in the morning. Everything I read confirmed her suspected autism diagnosis more and more. On a visit to the pediatrician, I shared my thoughts, and she administered the M-CHAT; the results were no surprise. Fast forward many assessments and specialists later, and we had our official autism diagnosis. There was little fanfare or reaction, as that it what I had expected to hear.
I was glad to have confirmation of what I already knew. And I was grateful to live in a major city where I felt my daughter could have proper support and services. Armed with literature, phone numbers, referrals, and URLs to visit, I set about trying to determine if my daughter needed anything and how to get her plugged in. And one thing kept coming up over and over and over.
“Early intervention is key. You will need a minimum of 40 hours per week of behavior therapy in order to obtain the maximum results, and you need to start now, before she’s three.” I read that and was told that more times than I could count. When I questioned this logic, I was told that there was extensive research to support this practice. So I looked that up too.
I reviewed numerous studies and sub studies. I examined literature reviews and meta-analyses. I checked out personal accounts and  contacted clinics. I reviewed the standards on the BACB (the body that is responsible for the accreditation of ABA programs and personnel). I watched some videos. I read various blogs. I looked at even more research.
And I wasn’t feeling it.
BC (before children) I had taken some undergraduate level psychology courses in college. I took more of them than what was required of my degree because I found the courses interesting, using the extra classes as electives. Aside from the usual intro to psychology survey classes, I also took child psychology, developmental psychology (over the lifespan), social psychology, women’s psychology, etc. While I do not profess that taking a handful of classes makes me any sort of expert in psychology, it seemed to me that this 40 hour a week ABA recommendation was contrary to nearly everything that I’d learned about development and the young child. I mean, 40 hours/week is the equivalent of a full-time job!
There was a plethora of literature about the way children learn. About their need for variety, spontaneity, and learning experiences. About their need to be nurtured, to move and play, to have supportive relationships, to build trust, to make mistakes, to develop healthy attachments.
Did all of this no longer apply simply because my daughter was disabled?
Before the diagnosis, I had worked part-time in order to spend more time with my kids. I was also blessed to have an employer who allowed me to work from home on some days and bring my daughter to work with me some days. My daughter’s Mothers’ Day Out program, which she had only recently started attending, was only 10-12 hours per week!  My child was not even in 40 hours per week of childcare for me to go to work, yet now she was supposed to be placed in 40 hours a week of therapy because we now had a name to a condition she’d always had?
(I know everyone is not fortunate enough to make the same choices, and for some people such a choice wouldn’t be optimal for their families even if they such an option. I was raised by a wonderful mother who worked full-time outside the home, so this is no indictment of working parents whose children are in day care full-time.)
Moreover, on top of the recommended 40 hours of ABA, we were told that we needed to reinforce the strategies used in the therapies with her at home – so essentially she would be in therapy all day, every day, even if no therapist was present. Plus, as my daughter had sensory and fine motor differences and speech delay, she needed speech therapy and occupational therapy also.  The whole thing was mind boggling. Was my daughter’s life going to be nothing but therapy after therapy from morning to night? When would she have time just to breathe? To play? To be alone and have some down time? Was she so broken that she didn’t deserve a childhood anymore?
I am not anti-therapy. My daughter had already been in therapy a few times per week since the age of six months, for some other health issues. But what was being proposed as a result of her diagnosis seemed far beyond that.
Then there were the costs of these therapies, which were pretty high; it seemed that many families had depleted their savings and refinanced their homes in order to come up with the money to pay for these services. There was huge variation from one provider to the next with regard to having the fees paid for by insurance and out of pocket costs.
Finally, I had to consider the therapy itself. Technically, it “worked” according to the studies. But the areas that were measured by most of the studies were not the areas of greatest interest to me, as her mom. I was less concerned about decreasing noticeable stereotypy, increasing eye contact, enrollment in general education, etc than I was about shaping her into a healthy, whole, decent person. The therapy seemed repetitive, dry, rigid, impersonal, and domineering. It seemed as if it was designed to “break” my child’s will and obliterate her natural way of moving, engaging, and communicating so that she could learn how to perform in a more “acceptable” way.  All done under the guise of “helping” her, wrapped up with convincing buzz words such as “evidence-based,” “indistinguishable,” “optimal outcome,” “function,” “normalization,” “reversal,” etc.
I wasn’t convinced.
I am the daughter of African immigrants who lived part of their lives under colonial rule and part of their lives under independence. There was a frightening parallel between the government-sanctioned Anglicizing and cultural genocide that my parents observed and described to me and the philosophy that supported such widespread endorsement of 40 hours of traditional ABA as “the” go-to therapy for all Autistic children. Just like many BCBAs, during the colonial era there were Europeans who sincerely believed that by getting rid of “barbaric” customs and “savage” practices, they were “helping” to make the countries they took over more “civilized.” They saw little to no value in the people’s way of life and felt an urgent need to teach them the “right” way to be in order to “make their lives better.”
No thanks.
We chose a different way for our daughter. A balance that allowed her to retain her autonomy and sense of self while also helping to guide her and teach her new skills. A way to help her begin to learn to navigate a world with people very different from her without having to lose herself in the process. An approach that surrounded her with people who were loving and prioritized her needs, but incorporated healthy, age appropriate boundaries.
Without subjecting her to the equivalent of a full-time job simply for the crime of being Autistic.

Photo credit: autismacceptancemonth.com

Saturday, January 17, 2015

Our Parenting Journey

(This is also cross-posted on the "Respectfully Connected: Journeys in Parenting and Neurodivergence" blog, available HERE.)

How do I write about my parenting style? It has become so intuitive that though I know it's different, I don't really know how to describe it. Yet I know it's important to, and I will hopefully find a way.

I do recognize it in others when I encounter it, such as with the wonderful ladies who are also involved with this blog. Though we are all unique, there are many shared beliefs and characteristics among those of us on this journey; those of us who have chosen to taken this "unconventional" approach to parenting.

So I have asked myself what does it mean to me to be a "connected" parent? What does it mean to respect my children and to be intentionally responsive to their needs?

It doesn't mean that I am a perfect parent, as I am far from that. It doesn't mean that I am not still learning and growing. It doesn't mean that I have all of the answers.

It doesn't mean that I don't have expectations for my children, that I don't offer meaningful supports, that I don't challenge them, that I don't encourage their progress.

It does mean that little of what I discover about the latest parenting trends, and/or what I read and hear about the "proper way" to "deal with" children with disabilities seems to make sense to me, or to apply.

It does mean that we do things a little differently. It means that we choose to be flexible. It means that we do not allow convention to dictate how we live our lives. It means that we prioritize the children's needs, share in their interests, value their strengths, and respect their limits.

It means that we go grocery shopping at night, when it's quieter. That we eat certain foods often that the children prefer. That we only attend certain schools (that are accommodating and accepting). It means that we encourage stimming and even join in.

And for us personally, it also means that child-directed play, baby-wearing, natural hair, extended breast-feeding, co-sleeping, and affirming language is how we roll.

It means that there is no place in our home for stigma, for "hating" disability, for stereotypes about cognitive abilities, or for shame.

Sometimes our family life is fun. Sometimes it is challenging. Sometimes it is exciting. And sometimes it's downright boring. But as parents, we always, always strive for it to be respectful.

I hope to share more about our lives in the days to come.



Photo credit: Respectfully Connected FB page



Saturday, January 3, 2015

Why I don't like all of those "get off social media and into the real world" posts

By now we've all seen them. The videos, articles, posts, etc that declare how "fake" social media is and stating how important it is to interact with "real people" in the "real world." Since we're still in the middle of the "new year, new you" period, such posts are plentiful right now, but you can see them any time of year.

And I'm not saying there isn't some merit to some of what they are saying. When possible and desired, it can be very rewarding to have face to face interactions with people. I'm not saying that social media should totally replace hanging out with people nor am I denying that sometimes it can be refreshing to take social media breaks or reduce the amount of time one is online.

But I am saying that these types of articles are written from a very biased, very neuro-typical point of view, and what they are implying about some of us is quite ableist and quite unfair.

Lemme break it down for y'all a bit.

Cue the 80's and 90's music. Before social media there was a little brown girl. As no teacher seemed to be able to pronounce "Morénike," she was known widely as "Nikky" (which all my old friends still call me, which is totally cool). Even as a little girl, she was better at writing than speaking. She got in trouble quite a lot from elementary school up through high school because she would write and pass notes to friends. The note-passing was not to be insubordinate, but it was her only true way of getting her real thoughts out. The thoughts that didn't come freely when she was speaking because speaking was so much mental effort, even though everyone considered her a pretty good orator, especially when it came to debate.  Her best ideas always came when she had a pen and paper in her hand. The same was true for academics, not just social interactions; her written reports were always far better than her oral reports. An undiagnosed autistic who was also hyperlexic and gifted, especially in verbal reasoning, she considered, and sometimes stated, that writing was her true "first language."

She didn't hate "being with people." She actually loved people. But it wasn't easy. She was both introverted and very social at the same time. No one knew the secret inner panic she felt about crowds, or parties, or groups of people. She hid it well. But sometimes it still came out, both in childhood/adolescence and in adulthood. In her late teens/early twenties, for example, it was not uncommon after a night at the club with friends (and/or after hours of socializing in big crowds) for her to become emotional, get into a disagreement with someone over something seemingly trivial in the car on the way home, and literally jump out of the vehicle and attempt to walk home. Her friends didn't understand these outbursts, though they tried to support her through them. She didn't understand them either. But she knew that she felt "caged" and that getting out of the car and walking was the only way she knew to regain control, to clear her mind, to get some breathing space away from everyone. Even though these were the people she loved best in the world, it was too much sometimes.

Might sound odd, but it was - is me. Fast forward lots of years ahead, and there are many such scenarios like that. Perhaps not as dramatic as exiting a vehicle at 3 am in the morning and trying to walk home in high heels and short shorts in the dark, but the same theme emerges.  Requesting, and paying extra for a single room in college to have some space. Working through lunch breaks at work to avoid having to socialize with co-workers. Declining the invitation to a party or other outing out of fatigue. Etc, etc. Not even really conscious of how or why at the time, I've always needed to build in "space" and "breaks" for myself to be able to function. Socializing takes a lot out of me. I enjoy it, but I have to be prepared before it, and I have to be able to "come down" after it.

But not all social interaction is built equally. I don't feel the same, nor act the same, in all settings. My special interests are learning, advocacy, and social justice, and I shine in social interactions where those areas are involved. Whether having a one-on-one conversation or presenting on a stage in front of a crowd of hundreds, once I get past the first few moments of jitters, I'm totally cool. I'm in my zone when I'm talking about and doing things that I am passionate about. When I am advocating and educating, the social anxiety can't reach me because I'm much too high. In those moments, my "deficits" - perseveration, intense focus, preoccupation with details, verbosity, atypical prosody, heightened sense of feeling and memory, etc - in those moments, those things aren't weaknesses. They're strengths; they're gifts. They're me. And they're freakin' beautiful, and real, and right.

However, this same woman (me), who can speak effectively and without fear in front of the world's leading researchers, or in front of government officials, or in front of celebrities...this same woman has to spend fifteen minutes in the car praying and doing deep breathing before volunteering at my children's schools (oh, the small talk!) or before calling up an old friend (texting is so much nicer), etc. These are people I LIKE, and yet it's hard for me. It is exponentially harder in forced interactions with people I don't know or don't like.

With writing, though, none of this applies. I'm so free. This whole post, for example, would have been very hard to convey if I had to "tell" it to you aloud. When my fingers are on a keyboard, or screen, or writing utensil, the real me emerges so readily. I'm free. Not that the "me" that is there when I'm in person isn't real; it is. But just less certain, less meaningfully communicative, less...me. Kind of like a person speaking a foreign language. You can live in a country for 20 years and the language of that land is now very familiar to you. You now speak that language quite well, but it will never come with the ease and natural comfort of your native tongue. In your second language you might be "good,' but in your native tongue you are almost "great."

However, social interaction is a part of life, and cannot be entirely avoided (nor should it be). Those of us who aren't the best at it still have to engage in it. And I have done so for years and did okay. Some years better than others, but still sorta okay. But then something happened that changed the dynamic quite a bit. If it was a book title, I'd call it "Six Kids in Six Years: The Accidental Family."  My family has grown exponentially in a short period of time, and it was the best "accident" I could have even been blessed with. Once, in what seems almost like another life, I was facing the prospect of not knowing if I'd ever be able to be a parent; now my "cup runneth over." I have a large, loud, loving, neurodiverse family, and I wouldn't have it any other way. They are my world, and they have my heart.

But.

They have needs. A lot of them. They need support. Encouragement. Nurturing. Guidance. Care. Love. They need a lot from me, and I am here to give it. But that means I don't have a lot of me left for other people sometimes. Not in a bad way; I care deeply for others, and try my best to be there for them. But my family comes first, last, and always before anyone and anything. Kid gets sick on the night of my high school reunion? Y'all have fun; I'm staying home. AIDS Walk falls during an important international conference? I'm leaving the conference; flying home early to walk with my people. Got an invite to a cool concert, but my kid starts having meltdowns/panic attacks/seizures before I'm supposed to leave? I ask another friend to go in my place. I don't mean for it to be the case, but life happens...and when you have a family as big as mine, life happens a lot. And without regret or hesitation when life happens to my family I know exactly where I want to be and where I choose to be - with my family.

And then sometimes life doesn't happen. There are days that things are pretty calm (our version of calm anyway). When things aren't super busy and nothing chaotic or catastrophic is going on. A lot of days are happy, and fun, and filled with memories. Thank God, more days are good than bad. But even on those days, my emotional capacity, my mental and physical energy, my socializing quota...all of those things are finite even on my best day. And you might find that even on the days when the sky is not falling and my face has been full of smiles, I still may not be able to socialize face to face. Because on good days I still have to drive four hours or more roundtrip getting the kids to and from school; I still might have to host a conference call; I still likely have to deal with things that require some of my "spoons."   So even on a good day, when that phone call is coming in I might (not even "might;" probably "will") have to let it go to voicemail (which I almost never check).  On a good day I still might have to let a little time go by before I check emails or texts. Because I just may not be able to handle communication at that moment...just because. I have a limited amount of "spoons" to expend each day, and most of them are going to be reserved for my family. Whatever I have left is for everyone and everything else.

So...that doesn't exactly make for a hopping social life in the "real world." In fact, about a month or so after my sons first joined our family a few years ago, one of them asked me, "Mom, do you have friends? Hardly anyone comes over here." Lol!


Then something pretty incredible happened. Three something incredibles even.

1. My available time for socializing and advocating increased because my children all went to school (even the little ones, thanks to the public preschool for children with disabilities, which enrolls eligible children as young as three years old).

2. We switched to a cell phone plan with a HUGE amount of data.

3. One of my very good friends sweetly convinced me to get with the 21st century and give social media, which I had been purposefully avoiding for years, a try.

And life changed.

My advocacy efforts expanded, because now I didn't have to do so much of it face to face. I gained access to a lot of exciting information and opportunities, and people. And I got a chance to socialize online instead of solely in person. I found that socializing, which was once a challenge, became practically painless. Now it was controlled, safe, and not tied to knowing when to look up, how loud or soft to make one's voice, when to laugh and when not to, when to gesture and when not to, whether or not to make eye contact, whether I was stimming or hiding it, etc. And when I was getting overstimulated, or if I needed to go do something or attend to something or someone? I just logged off and went to take care of my business; no worries.  It. was. awesome!

I found that my in-person socializing actually improved as well, because now I was less stressed out about it. My life in general became a lot less stressful.

I have met AMAZING people who I care for deeply on this "fake" social media. People I'd fight for. People who are fighting for me. People I will happily support if they need me, and who are doing the same for me. People I would have likely never met "IRL" (in "real life") for various reasons. And this same "fake" social media has allowed me to see a different side of people that I DO know in person, and has often helped me to actually like them more and feel like I can better interact with them socially in person as a result of our interactions online.

I admit it's not all rainbows and butterflies. I've seen the drama. I've seen the bullying. I've seen the unpleasant. Just like "IRL," there is good and bad to social media. I'm not pretending it's all wonderful.

But just because there are some bad elements of something, that doesn't make it altogether bad. Or fake. Or weird. I am MYSELF online. I don't create a fake persona of someone who is perfect or gorgeous or rich or super-important. I'm just me.

All of those "be with REAL people; get offline" posts are insulting. I am a REAL person. For various reasons, being with "REAL" people in person frequently is not possible nor desirable for me; being online gives me access to people and places that are difficult for me to navigate. To insinuate that people like me are shallow, fake, or depriving ourselves because our preferred mode of socialization differs from others is unfair.


I socialize more easily this way because I am autistic, I am busy, I am a mom with a large family of which many of its members have disabilities and require extensive time and support, and because it is less stress-inducing. Some people socialize better online because they have geographic constraints, because of physical/mental/emotional disabilities, and/or for other reasons.


We respect people's right to small talk, being around people all the time, and socializing the way that works best for them. Please respect the right of people like me to socialize the way that works best for us.


Thanks bunches for understanding.  See ya on Twitter!


Photo credit: crowdclan.com