This is for you….

image is the yellow--the sun rising over the earth.  the text reads:  "look closely at the present you are constructing.  It should look like the future you are dreaming."  Alice Walker

image is the yellow–the sun rising over the earth. the text reads: “look closely at the present you are constructing. It should look like the future you are dreaming.” Alice Walker

This is for you.

I read this article this morning in New York Magazine.  And I can’t think of any other way to describe the emotions it provoked than deflated.  Deflated because of so many things.  But mostly because of the way that Issy’s privacy and humanity continue to be disregarded.

No matter how you feel about the shape that discussions take around Kelli Stapleton, I can’t help but believe that most people would agree that it is not okay to continue to publicly label Issy as violent.  That Issy is defenseless.  That she is not being given a choice or a say.  That it is not okay to give this label to a child who will wear it for the rest of her life.  That this portrait of Issy will color everything she does now and forever.

This is for you if you are not Kelli Stapleton.

You are not Kelli Stapleton even if you’ve gotten all the way to the end of your rope and NOT hurt your child.  You are not Kelli Stapleton if something–anything–made you stop.

This is for you if you’re a parent or caregiver of an Autistic child and you need help.  No matter where on that rope you are.

I cannot and will not say that discussions about filicide have any place in talking about what parents need.

I cannot and will not say that filicide is a possible outcome for a parent that is just stressed out beyond what most people think is possible.  For a parent that is stressed out and mentally ill.  I maintain that there are other things at play when a parent commits filicide.  I know that others disagree.

But frankly, I’m so worn out from the circles we go around when discussing these differences.  And I feel like I have nothing more, at this point, to productively contribute to that conversation.

___________________________________
That’s the line.  This is me trying to move the conversation forward.  Trying to move my own mind beyond that which I can’t think about anymore.  This is me wanting Autistic kids and their families be happy.

I want to open up a conversation about how to raise happy Autistic children.  I want to open up a conversation about how to be a happy (mostly) parent to an Autistic child.  I don’t want to talk about filicide or Kelli or Issy anymore because I can’t.  So for now, I will leave that to other disability activists.

So this is for you if you’re interested in discussing change without ^^^ that tragedy or the others like it.

This is for you if you are the parent of an Autistic child and you need help.

I KNOW that all parenting is hard.  I also know that raising an Autistic child presents a unique set of challenges.  I know that there is very little support from professionals and schools that truly helps Autistic kids and their parents to thrive.

I KNOW that the lion’s share of what we are told we need to do to successfully raise an Autistic child is not helpful at best.  In fact, it is often harmful to  Autistic kids and their families.

I know how hard it is to say, “no” to all of that well-intended but misguided advice.  I know how hard it is to say, “No, Ms. Expert.  You actually have it wrong here.  I know you have a million degrees and certificates declaring your prowess, but you just have it wrong.”

I know that as parents we are lead to believe that there is but one way of doing it right.  And there is shaming and guilt when we dare to question the accepted protocols.

But clearly.  Something is wrong with what is being prescribed as “treatment” for Autism.  It isn’t working.  If it were working, we wouldn’t be seeing miserable Autistic kids and parents to the degree that we are.

My god, the things we consider or do subject our Autistic children to… and the money we pay in the hopes of helping Autistic kids find a way to be happy.  Can we not consider some very basic things that don’t cost us anything but time and a little patience as we transition to a new way of thinking and a new way of parenting?

This is for you if you are the parent of an Autistic child and you want to talk about raising a safe and happy Autistic child and you are ready to at least consider an alternative to what is so clearly NOT helping most families.

If you’re willing to consider some of the parenting strategies that work for me and most of the other generally happy parents that I know?  I want to talk talk to you.  I want to help you.  If you don’t want to talk to me because you don’t like me or my style, I want to put you in touch with someone that is more suited to your personality.

I cannot and will not be of any help to those that are only willing to consider ABA therapy as the answer because I believe, based on personal experience, that it is a major contributor to the problems that Autistic children and parents face .  But if you’re willing to think outside of ABA, I want to talk to you about what you feel you need as a family to get your head above water.

This is for you if you need help.  If your child needs help.

This is for you if you CAN help and contribute productively to the conversation.

This is for you if you share my heartfelt desire to see thriving Autistic kids and thriving families.

Comments are open but will be moderated. On this thread, I will not post any comment which refers to Issy or Kelli.  Whether I agree with the comment or not.  If you have a question or comment which is private–please post it anonymously.

Ask/Comment freely but know that I will edit comments to keep them in accordance with my convictions about respectful language.

Let’s talk…

14 thoughts on “This is for you….

  1. This is amazing! Thank you so so much for doing this. I would love some suggestions on how to start with AAC. We recently got funding to get Proloquo2go on my 4 year old twins IPads so we will hopefully be starting that soon but I have no idea where to begin. One of my girls has some spoken language (she’s a chatterbox with lots of scripts and echolalia) and the other has none (but she gets her point across with out too much frustration) and they both have some experience with PECS. I love your blog and your approach to parenting autistic children, you are definitely one of my role models. Thank you!

    • Hi Jessica!
      Thanks for your comment. Are your twins currently receiving services from an SLP? Sometimes SLPs are resistant to AAC. In an ideal world, you work with an SLP to get up and going. But we don’t always live in an ideal world. If you’re having trouble getting buy in from your slp, we can talk about how to overcome those obstacles/objections.

      In the meantime, please check out my lovely friend Deanne’s blog. Here is a link to her posts about ipads and Autism. She also has twins and some really great posts about getting started without the support of an slp.

      Do you have specific questions? If I can’t answer them (and I probably can’t), someone here probably can. Or I can solicit help from Autistic AAC users or parents.

      • They receive SLP services as part of their school day and some limited services through the county. Both have been more than a little unenthusiastic about the idea but I have been pushing. I would love some info on how to get them on board. Another concern I have is transitioning from IPad as toy to IPad as communication device. Obviously I want them to have unlimited access to communication but like a lot of parents I worry about “the dangers of too much screen time”.
        Thank you for the link, I will definitely check it out.

      • Hi Jessica,
        Okay, so how are they progressing in terms of speech and language goals on their IEPs? If they are not making reasonable progress, you have grounds to request additional accommodations including AAC. If they are meeting the goals, it might be time to request an IEP meeting and make changes to the IEP. Maybe the goals aren’t aggressive enough. It is reasonable to have a goal that your 4 year old children will be able to communicate certain things in a way that most people can understand. Not just the people that know them best. If they can’t do that with speech and pecs, it is more than reasonable to request an AAC evaluation.

        It is possible that you will need to request an outside evaluation because not all slps have the training and/or experience to successfully implement a program. Probably more importantly, not all slps believe that children are capable of mastering AAC. They may have a faulty set of conditions that need to be met in order to progress to AAC. I think the AAC specialist that did my daughter’s eval said that the only condition was the ability to navigate or learn to navigate on a device. My daughter demonstrated that ability through her use of her ipad for entertainment. The previous SLPS that we worked with had indicated that mastering pecs was a prerequisite. This did not turn out to be true.

        My daughter uses touchchat, not proloquo. But I suspect that there might be a similar feature so that you can lock the ipad down to the communication app. I will look into that. We are blessed to have two ipads–one for communication and one for entertainment so there is less confusion. But it goes to the age old–time for work and time for play. It can be painful to establish a routine but that doesn’t need to last forever. At school, they set a visual timer for my daughter when she is using her entertainment ipad. She apparently hides it and shuts it off which cracks me up.

        At home, we tell her she is done and put it away. While I don’t force her to do what I want her to do, I also establish that boundary. Sometimes this looks like her sitting there pissed and refusing to do what I’m asking. That never lasts long. Usually she is fine with the transition–especially when I give her a visual cue as to what is coming next. Like I will show her bathing suit to her and start helping her put it on.

        Hope that helps 🙂

        Editing to add that I am actually really bad at explaining things so feel free to ask for clarification if I haven’t made myself clear.

      • Everything you said made perfect sense. I know the girls’ IPads have a guided access function which is what I was planning on using to keep them from playing too many games.
        I will have to double check their IEPs but I know that K (my daughter with some speech) is meeting most of her goals as far as number of words/gestures and Stage of PECS. C, however, isn’t really meeting them. She has a very “honey badger” type personality, does her own things in her own way on her own time. Which is fine with us, we don’t want her to be someone else, we just want her to be able to communicate with us and anyone else she comes across. K is more of a people pleaser, and it can be hard not to take advantage of that.
        I think what I need to do (again actually) is sit everyone involved down and make a plan and make sure everyone is on the same page. I will look into getting an assistive tech assessment too.
        Thanks again for all your help!

  2. Thank you. I simply can’t understand, after just seeing the two horrible tweets she made, how people can give her the benefit of the doubt. I just can’t.

  3. I am worn out today, but I just wanted to say thank you to you for opening dialogue on this.

    In the future, people will look back on our time with the same kind of horror with which we look back on the early days of Bethlehem (Bedlam) Hospital or Willowbrook (the facility Robert Kennedy helped shut down for abuse of autistic and intellectually disabled patients.)

    Thank you for being one of the people who are putting us on track for that better future.

  4. My moderately autistic son uses language to get his immediate needs met with adults but peer interactions are pretty tough. What types of therapies, routines, or practice can help my 5 year old son learn to:
    1) make and keep friendly conversation going
    2) maintain focus on multi step directions given in a group (visuals?)
    Our insurance covers OT and speech but not ABA, so I’m looking for any and all additional techniques I can do myself at home

    • Thanks for your questions.
      Can you say more about why you (or whoever) to focus language on making friendly conversation? I know there is a lot of pressure for kids to learn small talk. But I really wonder why…and especially at such a young age as 5? I don’t really expect my child who is not Autistic to be able to make conversation or even maintain it. I feel like at five, most kids would have a hard time doing this. We often put more pressure or have higher expectations of Autsitc kids without even realizing it.
      My advice would be to encourage your child to build meaningful relationships with people he can trust. Like you, and whoever else is in his life. Because you know him, you can pick times when he is most able to to communicate. You pick a topic that is of interest to him and try to engage him by asking questions and making comments. Follow his lead. You can model this type of give an take.
      I’d also suggest thinking about AAC. There are lots of reasons why your child may not be able to understand and use spoken language that have nothing to do with his ability to communicate in other ways. I was already thinking about doing a blog post about this so I will try to do that over the next couple of days.

      Maintaining focus. Again, this might have something to do with auditory processing. You mentioned visuals and I’ve found visuals to be helpful in most situations for my daughter mainly because I am certain that she doesn’t process what I say a good portion of the time. Also, I’m going back to the fact that at 5, I’m not sure if any child can be expected to follow multi step directions reliably? I know that I give my five year old an overview and then break it down into smaller steps for her. I will try to get some photos of a binder that I’ve made for her with her daily responsibilities which is helpful.

      I hope that helps and that others will chime in 🙂

      • Maybe I am pushing a little hard… A few of the peers he has grown up with try to engage him in conversation and my son often won’t respond in a way that makes sense with staying on topic…or he just clams up and looks down, even though he will ask to see this friend later, when we are back at home.
        A calendar and visuals for morning routines and “chores” have helped, so I wonder if I can put together visual reminders for how to talk to peers– maybe social stories? (Just heard of these)

    • Okay here are some awful pictures of my five year old’s binder–I am a terrible photographer. These are multi step tasks broken down, visually, into smaller steps. She also requires me to help her organize these efforts.




  5. I’ve decided to come out of my lurkdom for this post 🙂 I’ve read your blog for a long time and I write one too. I like to think that the theme of my blog really is this- how to live and be happy as a parent of an autistic child (I have a girl too). And we are. And I’m trying to help other parents to see that it is possible. So thanks for this!

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