Thursday, April 13, 2017

So, My Mom Died

CN: death of a family member, talk of child abuse

I'm going to be talking about some real life stuff that I am going through.

One of the things that I tend to do when a big thing is happening in my life that I don't want to deal with is to get really busy.   I feel like I have been incredibly productive the past month.  I dug out the place for our garden and have been working nonstop in the yard.  I have been asking people if I can do graphic design stuff for them for free because I am running out of ideas for what to make for the library's social media and other places where I volunteer.  We are doing tons of home school projects and painting, making elaborate meals and having fancy cheese parties with my kid.... and basically all the things to take my mind off of life.  And I pushed and pushed until I couldn't anymore.

Last month, my mom died.  And I know it is silly, but probably something a lot of people have thought about their moms... but I thought she would be around forever.  We weren't particularly close, probably in the last few years was the most we have ever talked.  A few years ago she called me from Ohio and said "I know I wasn't the perfect mother...."  After that, we talked about once a month or so.  We'd talk about how we wished I could afford to fly home and visit, and she'd ask about my son and send him cards or the occasional check.  It was always weird though, because for most of my life I thought she did not really like me.

I think that these things were her way of saying she was sorry?  I think so.  I hope.  I don't want to get into all the details of my fucked up life story, but there was abuse.  I don't think my mother knew how to handle an autistic child, (or even an allistic one for that matter).  Especially one who did not have a name for what made her so different and defiant and frustrating.  One of the things we talked about was my chapter in the AWN book "What Every Autistic Girl Wishes Her Mother Knew", because I did not want to hurt her feelings when she read it.   She was really excited to read it and would check the website all the time to see if it was ready and finally for sale.  I told her that I would send her one of my copies and that was the last time we spoke.  I never made it to the post office.

On a Saturday night, my youngest sister called me, hysterical and saying that my mother was found unresponsive.  Later, we found out that she'd had a massive stroke.  The next night I was on a plane to Ohio.  I borrowed money from my in laws to buy the tickets and my amazing friend Court crowdfunded that, plus hotel costs and more so that I would not have to worry about paying it back while also going through a crisis.

I did not recognize my mother at first after I dropped everything at the hotel and raced to the hospital.  None of my sisters were in the room when I got there, so I had to look at her chart to make sure I had the right room.  I held her hand and told her I was there and apologized for it taking so long.  I told her that F was there and needed to see her, and she started to cry.  The doctors told me it was a reflex, she could not hear me....and I know people will think I just wanted her to hear me, but I do believe she could hear and sense us, at least the first few days I was there.   We were never the kind of family who said "I love you". (That is probably why I drive my son nuts saying it all the time to him now.)  In fact, I can't remember one time in my entire life when my mother said she loved me.  I like to think she did in her own way.  I told her that I loved her and she started to cry and cough some more.   I asked her to please wake up, I had her copy of the book.

Honestly, my time in Ohio was such a blur.  And F, he was so wonderful. God, it must have been so hard for him to sit there day after day in a hospital, later the hospice and see me so upset.    I have some pretty bad ass lifelong friends back home though, and many of them volunteered to sit with him, take him to McDonalds, play with him and basically try to give him a little bit of normal, as much as they could under the circumstances.

After the first day, the doctors told us there was no brain activity other than in her brain stem, which controlled her reflexes like breathing.  She was adamant after my dad died that she would not want to be kept alive with a feeding tube or ventilator.   We knew her wishes, but I wanted to be sure.  I know you can't be 100% sure in these situations.  But I kept asking "are you sure this is it? nothing can be done?"   Nothing could be done.

My mother was transferred to hospice but there was no room at the hospice house because she wasn't in severe distress.  After some drama when we got to the other place, which was a nursing home, where they didn't even KNOW she was getting hospice care, we managed to yell, cry and scream our way into a private room. (seriously, they were going to put her in with four other people!).  I could not leave her there.  I know what nursing homes are like.   My youngest sister spent nights there and I spent the day there.  At times, my friends, who had known my mom their whole lives practically too, would sit with her so that F and I could get a break.  But I was terrified to leave.

She was there for five days.  It seemed so much longer.   F would entertain himself on his iPad while my (adult aged) niece and I sat with her.  My sisters and I decorated her room with things from her home, letters from my dad when they were dating that she had saved, pictures, her dirt from Ireland.  She had a bag of dirt from Ireland that she carried with her.  I don't know why, but she talked about her Irish dirt on more than one occasion, so we brought it.  I read her my chapter from the book. I don't know if she heard it, I hope she did.  Because I said in my chapter that I knew she did the best that she could, and I think she did.  My mom was not really the product of a happy home herself....I don't think she knew how to be a mom.

My niece brought a big bag of my dad and mom's letters to each other from when he was stationed overseas and they had just started dating. One thing that I can say for my parents is that they loved each other and their love was so amazingly strong.  They were best friends.  The last 15 years since he died were just so hard on her.  She seemed so lost, even more than before.  My niece and I read the letters, we laughed at some of the stuff we didn't know before.  We cried at some of the stuff too.  It was hard but it was also beautiful, and I am glad we were together.

On the fifth day, waiting for my nieces and my sisters....I felt my mom's head and she was so hot.  I called a nurse, but the nurse was on break.  An aide came in and she knew.  She just knew and she took me aside and asked if she could give me a hug, which normally getting hugs from strangers is not my deal...but I needed that.  Then, mid hug she started to cry and she said "I'm so sorry, this is my first day back after taking care of my own mom who just died of breast cancer and I just feel so much for what you are going through because I was just in your place."

So, then we had a good ugly cry together.  She left the room when the nurse came in and I went to hold my mom's hand and explain what the problem was to the nurse....and then my mom died.

It was all foggy after that.  My son, he did not really know his grandmother at all. He was sad, that's for sure....and before we went to bed that night, he said "I'm so sorry for your loss, mom." and gave me a hug.  I went to put his laptop away and he had googled "things to say when somebody died".

He is the best kid.

As I said before, I do not think my mom knew how to be a mom. Sometimes I get really angry at the things that I went through as a kid.  I mean some of the things she did to us were incredibly cruel and fucked up.  But she loved her grandkids.  She loved being a grandma.

After she died, so many people told me how they remembered the things my mom did for them.  She and my dad ran a food pantry, a free meal, they helped people.  They liked to help people.  And they never asked for credit or acted like they were saviors.  I think they knew how much poverty hurts, because that's where we lived too.  So many people told me things about her, how she helped them when they needed it and did not judge them.  Friends who needed a place to stay were always welcomed in our home.  People remembered her take no shit attitude but also her kindness.

And I do think that my mother was a good person, even if she was an imperfect mom.  I used to feel a lot of anger.  And probably, I will still feel that at times because it's a lot to unpack.  Now I just feel sadness.  I sometimes wish she could have loved me like she loved other people.  I used to think that she didn't love me at all, but maybe she did, in the only way she knew how.

I saw my parents talking about injustice a lot when I was growing up.  I saw how they treated people and always wanted to help, how they really wanted to change the world.  I think maybe some of that has rubbed off on me a little?  I hope so.  Maybe that is the way I need to remember her now.   For her compassion and for her hope that the world could be better, be more fair.  And also for her take no shit attitude.  Because I like to think that I got a little bit of that from her too.


image is my mom, an older blonde woman with glasses holding baby F on a picnic bench


Monday, April 3, 2017

Revolutionary New Autism Treatment





We hear so much in the media about the “cost” of autism. Thanks to fear mongering by groups such as Autism Speaks, we know that therapies like applied behavior analysis - considered the “gold standard” of autism treatment - can cost in excess of millions and even billions of dollars over the autistic person’s life span. I don’t know about you, but I don’t have millions of dollars lying around to fix my kid!


Fortunately, I have found an alternative that will COST YOU NOTHING, is easy to implement, and won’t cause that darn PTSD so many autistic people develop from compliance-based therapies.


As the parent to an autistic kid, we want to do everything we can to make sure they have the best chance at a happy, successful life. Thanks to my revolutionary new autism treatment, your children CAN have all those things!


While most autism treatment programs focus on pathologizing every goddamn last thing your child does, the NBAA™ method allows your child to relax and enjoy their childhood. Yes! That is a thing… autistic children being allowed to just be kids once in a while! And with NBAA™, this is not only allowed, but encouraged. By shifting your perspective from being your kid’s therapist (who must create “teachable moments” in every situation) to one of a parent who is able to just enjoy their relationship with their child, you can create a loving bond which may look different than what you expected but is every bit as beautiful and real.


This program will allow you to:


- establish a warm and mutually loving relationship with your child
- give your child the tools to avoid developing PTSD
- instill healthy self esteem in your child and the ability to form loving & trusting relationships based on mutual respect with others
- not be your child’s 24-hour-a-day therapist and to refocus your energies on just enjoying your relationship with your kid
- confront ableism, instead of trying to constantly battle your autistic child like some creepy-ass WarriorParent™
- teach your child that their bodily autonomy is non-negotiable, thus making them more confident and better able to recognize and avoid abuse
- recognize that autism is an inseparable part of who your child is and that is okay.
- find supports and accommodations which will actually enrich your child’s life instead of worrying about “fixing” a person who is not broken.
- have realistic expectations for your child which are consistent with what we know about child development
- redefine what constitutes normal, success, and other arbitrary concepts which have nothing to do with happiness
- understand enforcing compliance is not compatible with presuming competence
- recognize that stimming is pretty awesome and "quiet hands" is bullshit
- discover communication comes in many forms, each as valid as the next
- become your child’s biggest ally
- save a ton of money by not being pressured to buy the NBAA™ book, or put your kid in 40 hours a week of paid therapy, or take an expensive NBAA™ training course


…and so much more!


Just listen to these parent testimonials:



“…have never used ABA on my daughter and I believe that's a large part of why we have such a deep connection. She knows she can trust me because I don't try to manipulate her or punish her. She has a lot of confidence because we have always embraced her for exactly who she is without trying to change her, and work with her to find supports that work for her as opposed to controlling behaviors. I also feel that keeping her out of ABA will help her to be safer because she knows that she is allowed to say no, even to adults and her autonomy is respected as much as possible.”

-Lana



“The benefits that I have seen in my kids are that both of them have learned to self-direct and teach themselves things that interest them. And they enjoy learning. For example, I showed my son how to get to YouTube videos of fans (which he loves). I showed him several times. Then I let him figure it out. So he learned basics about how the computer worked and how to find something online. He learned how to keyboard and spell the things he liked. And I never had to break it down and teach him in tiny pieces and reward him with a potato chip or anything like that. I just did it with him and made it fun and respectful.”
-Nadine



“We tried seeing a therapist who wanted me to use ABA type strategies. It was pretty clear very quickly that they were outdated, ineffective and dehumanizing. Ditching all those ideas was the best move we made. I realized her anxiety was real and needed treatment with medication (with her permission and full choice) and wasn't just a manipulation (as was suggested to me đŸ˜¡). We also chose a school that was not authoritarian and allows her to grow at her own pace. She is thriving with zero pressure to be anything other than herself. I've also found that a lot of "behaviors" these therapists are so worried about are natural stages for neurodiverse kids. For example I had a therapist tell me I needed to force hairwashing more or she would never have good hygiene. With time and patience and frankly doing nothing but offer her the choices she prefers she happily takes a shower and washes her hair every two weeks which is perfectly fine. It sounds cheesy but there is no better therapy than just knowing your child and helping to accommodate their needs. Seems pretty simple!”
- Jocelyn



“Trust. Camille's only done trapeze and art classes as therapy. We choose her teachers carefully making sure they will respect her neurology. The trust really came out when Camille
started trapeze, and saw me not only advocating her but supporting her own advocating. We tried ABA like stuff when she was young and destroyed our relationship so seeing her once again trusting me was amazing. Now she's an incredible confident, strong, kid who has zero issues with her neurology. She has made all the big choices in her life with incredible maturity and insight.”
- Ginger



“I have never noticed a time when my daughter has not been 100% comfortable in her own skin, so to speak. She bounces or steps from side to side when she is happy or excited, and moves/flaps her hands when talking. If someone asks her why she does it, she simply says that she wants to. End of story. She has never been shy about asking me a difficult question or talking to me about unpleasant experiences, which tells me that she trusts me and knows I will listen and help her. I believe she knows that she is loved unconditionally and free to be herself. She is confident and proud of who she is, at just 7 years old - which is pretty great to watch.”
- Amy



“ I have not used any therapy. I just trust my gut in parenting my son. He is 17. We are close. He does, chores, errands, virtually everything with my husband and I. We role model. I would describe our relationship as honest.”
- Joan



“My son was never in ABA--the closest he came to compliance training was in pre-k with a short lived stint with a 'feeding therapy' type deal and in K with a ridiculous behavior mod program that lasted about 2 months. Both were mild compared to formal ABA...but both sucked the life out of him and caused long-term damage.
So--I write that part because it took time to rebuild trust. Changing schools, changing my mindset and going with my gut and simply trusting that I didn't need to push him or let people tell me I needed to make him do things he wasn't ready or able to do.
Benefits: he has learned to trust that I won't try to force him into something and that he is always allowed to say no. I've seen him grow to be confident and self aware while also seeking help and comfort easily when he needs that. He knows that I won't minimize his anxiety or his troubles even if I don't readily understand the "why" behind them. He knows how to self soothe and he knows that whatever he needs to do is ok.
He has learned countless things on his own time and of his own accord because he is given the freedom to do so.
I think that he truly knows that I will always have his back and that I am a safe place for him--and that I would never allow him to be treated with anything less than respect.
He knows he is in charge of his body and his mind. We are connected in a way that absolutely would not be possible had I put him in ABA and used any compliance training with him.”
-Galadriel


“I'm going to be really, really honest... when we received Curlytop's dx, our psychologist told us we needed ABA, and I was destroyed when I learned it wasn't available in our area for kids over 5 years old.
So, I started a wild search for a provider, and in doing so, learned more about ABA and realized it was NOT what we wanted for our daughter.
I was "young," as far as being the parent of an autistic child. That is, I was a newb. I thought if the professionals were recommending it, it must be the right thing, but when I actually learned what it was, it didn't mesh with my parental ideals, or the goals I envisioned for my daughter.
So, we sought out speech and occupational therapies with providers that were willing to work with our standards. And the result was that my daughter has grown on HER OWN TERMS, and is more comfortable with who she is, because we've allowed her to have input into her therapies.
When ABA-esque goals come up in IEP proposals, we soundly reject them, and we say why. "No, she doesn't need to learn extended eye contact. It's painful for her. No, she doesn't need to learn to control her squawking. It releases stress for her."
The result? She's been allowed to decide what level of eye contact is safe and comfortable for her, and she uses it more with people she trusts -- even though it was not a "goal." Her vocal stimming is reserved for times of high anxiety, and not an everyday occurrence -- even though it was never a "goal" on paper to reduce it.
She feels safer, and more comfortable, because there is no pressure to conform to a model that is not meant for her.”
- Christina



“ *We are SO happy. My child is sooooo stress free and relaxed most of the time. Sure, he has support needs.... But we do what we do and life is really super joyful for us. My child trusts us, which is something I do not think we would have if we did ABA. I think that trust is huge. It's the basis for everything. (I never had that, so yeahhhh.) The only time he struggles is when we have fallen short on support (we don't always get it right) or when when life stuff is beyond our control and creates stress. And we are all learning to work through that stuff together. We are doing pretty damned ok most of the time.”
- Michelle



But what is NBAA™? NBAA™ stands for “Not Being an Ableist Asshole” to your kid. It might sound complicated, but it’s actually pretty simple. Not Being an Ableist Asshole will cost you nothing, but the rewards you and your child will receive are priceless.




How can you practice NBAA™? The secret is recognizing your child is a human being with thoughts, feelings, and a will of their own. You must learn to accept and love them for who they are, not for how they compare to the child you expected to have. (This actually also applies whether your child is autistic, otherwise disabled, gay, trans, or any other marginalized identity which is 100% valid and valuable, even if you do not understand it.)



When we refocus our energies, from trying to change children or make them indistinguishable, to helping them learn to love themselves for exactly who they are, teaching self advocacy skills, and helping them find the right supports and accommodations, the results will speak for themselves. At the end of the day, you will not have a non-autistic child, but you will have a child who knows they are loved and valued. You will have a relationship with your child that is based on unconditional love and acceptance. Change your thinking, change your world, but don’t change your child.


* I did not actually invent Not Being an Ableist Asshole™
** A sampling of places and parenting blogs for parents who would like to try NBAA™ which are 100% free and 100% respectful to your child’s beautiful brain:




Parenting Autistic Children With Love & Acceptance


Respectfully Connected


We Are Like Your Child


30 Days of Autism: Leah Kelley


Love Explosions


Autism HWY


Suburban Autistics


Michelle Sutton Writes


Erin Human


Ollibean


Diary of a Mom


Down Syndrome Uprising


Mama Be Good



image: multicolored stars and text with a blue/green megaphone. Text reads: Wow! Amazing! Revolutionary! Incredible! New Autism Treatment Guaranteed Results!