Alone? Frightened? Worried?

“No one knows how to help us.”  This was what I once said to my husband.  It was many years ago.  So many, I no longer remember the year.  Along with that realization was this one – “We are in this alone.”  And while, at the time, that thought terrified me, it was the beginning of finding another way.  It was the moment when I realized all these people we were looking to for guidance, didn’t know what was best for our daughter, even when they believed they did.

In the beginning we were told how fortunate we were, our daughter was “mild” we were told and if we followed their advice – an aggressive implementation of ABA, Speech Therapy and Occupational Therapy – she would be in a regular classroom by the time she entered kindergarten.  She was still two years old when she was diagnosed and we knew nothing about autism.  We did as we were told.  We were assured she would “skyrocket.”  We fought to increase the hours of therapy, we went to the team meetings, we took notes, we learned how to “play” with her using ABA’s techniques, we monitored her and kept charts.  We filled notebooks with our observations and we waited for her to “skyrocket.”

When she turned three we enrolled her in an ABA based pre-school.  By the end of that school year I no longer believed all that I was being told.  The therapists were no longer assuring us she would “skyrocket.”  Now words like “red flag” were being used to describe her behavior.  She had “behaviors” and these were being pinpointed and noted with alarming frequency.  We were getting reports of non-compliance, an inability to “use her words” as though she was being defiant  and then she began to self-injure. No one understood why.  Everyone was baffled.

And now, so many years later, I look back on those years and it all seems so understandable.  They say hind sight is 20/20, that looking back we can easily understand that which was once incomprehensible.  I understand now.  We didn’t appreciate what was going on.  We didn’t think we understood our child, and for the most part we didn’t and we kept looking to others to explain her to us.  The explanations they gave us, we believed.  We thought, since we didn’t understand and they seemed sure that they did, they must be right.  It took several more years for me to realize they didn’t and they didn’t know how to help us or her either.  When the methods they believed in didn’t do what they believed should and would happen, they blamed us and they blamed her.

Emma continues to remind me that “regret is not needed” and she’s right.  I am working hard on that one.  I cannot describe someone else’s experience, I can only write about mine.  This was mine.  As the mother of a daughter who was once believed “mild” and later “moderate” and finally “moderate to severe” on autism’s vast spectrum, we have learned a great deal.  And while many may not derive any solace in what I’m about to say, I would have.  No one can predict what life holds for your two, three, four, five, six or seven-year old child.  No one can predict another’s future, there are too many variables.

That my daughter has some spoken language is, and was, the single biggest red herring for those who meet her.  It never occurred to us that all that speech therapy, focusing on spoken language, would ultimately be unhelpful.  I knew nothing of AAC  (Augmentative and Alternative Communication) devices or methods and as spoken language seemed to me to be the ideal, the idea of her using something else honestly never crossed my mind.  Why would I encourage her to use something else to communicate if she could speak?  When, after years of speech therapy focusing on spoken language, she still couldn’t have a conversation with us, our answer was to try more, push harder and it would come.

So many people ask what we would have done, knowing all we know now.  This is a question that is specific to my daughter, but I know there are other children who are similar as I’ve met so many of them.  I would not have waited so long to begin using other forms of communication.  In fact, this would have been the thing I would have concentrated on right away.  There is no evidence that using an AAC device will have a negative effect on spoken language acquisition, in fact there are studies showing the opposite is likely to be true.  Had my daughter been able to communicate at an earlier age, many things would have changed.  The most important one being that we would have understood much earlier all that she knew and understood.  This may strike some as a little thing, but I can assure you, had we realized this early on, had we believed this right away, it would have changed every single decision we then made.  Not to mention the massive reduction in our stress, anxiety and fear.

There is so much we are learning and still have to learn, but we are no longer alone.  We are surrounded by other parents, professionals, educators and, most importantly, people who share our daughter’s neurology, those who are Autistic and who continue to share their experiences with us so that we might better parent our Autistic daughter.  And of course, our daughter, Emma whose patience, love, wisdom and endless compassion is teaching us more than any.

 

One year after the diagnosis

One year after the diagnosis

31 responses to “Alone? Frightened? Worried?

  1. Reblogged this on Exceptional Delaware and commented:
    Emma sounds like a great daughter. It’s amazing how much our special needs children teach us as opposed to us teaching them. I truly believe God has a special plan for these children.

  2. God she’s cute !

    >

  3. Yes!! everyone needs to read this!!

  4. Ariane, my parents didn’t understand, either. In fact, no one knew I was autistic, I was so “mild and verbal.” I still had difficulties, but my mom did the best she knew how. Encouraging me to socialize, getting me into a private school, and putting up with years of meltdowns. I turned out pretty good, and so will Emma, because you DO know, and your family can make the decisions together.

  5. Marie Brennan

    Emma is a wonderful blessing. She can show you now what a bright, beautiful mind and spirit are within her. Even if she couldn’t show you, she would still be the person she is, only you wouldn’t know, and you wouldn’t be able to interact with her the way you can now. That’s how it is for us and our daughter, Katrina. She is a beautiful person, hidden, from us. We are learning to appreciate our beautiful gift, even though right now we can’t see what’s in there. We find other ways to enjoy her, and we have faith that our gift will open in time. If not, we’re OK with that too.

    • “Even if she couldn’t show you, she would still be the person she is, only you wouldn’t know, and you wouldn’t be able to interact with her the way you can now.” This is so important Marie, and you are absolutely correct. We wouldn’t know, not in the way we do now. But even before she was typing with us, we had begun to presume competence and that alone was such a massive shift from what we’d been doing up until that point. Believing in her and believing her competence was a huge change in our thinking and as a result in the way we interacted with her.
      Whenever you speak of Katrina, you speak with deep respect and love for her. I do not doubt for a second the amazing impact that has on her life.

  6. No can we have alone/frightened/worried no more re: stomach stuff, anxiety, social stuff, general “difference”…? It’s so hard not to feel alone/frightened/worried sometimes even when one does 100% accept, adore and understand…when so many do not…
    TRYING!
    and Thank you.

  7. This is why I argue against sub-types of autism at this point. No one believes that there is only one autism, but at this point, two kids who are identical at age two could live vastly different lives as adults. Also, many of us change diagnostic categories as per DSM-IV several times, such that it really becomes meaningless. A very young child might be diagnosed with Asperger’s and grow up to be nonverbal. Also, clinicians constantly ignored the actual criteria and diagnosed as they pleased with all sorts of erroneous beliefs, inserting their opinions into their diagnostic practices. I had someone insist Temple Grandin has Asperger’s, despite the fact that she wrote many times of her speech delay. Even at that, “speech delay before age 3 and IQ over 80” (or is it 70? or 85? Everyone has a different opinion) is a really arbitrary line that bears no meaning for a child’s later presentation. I don’t doubt (who does?) that there are, in fact, many causes and many forms of autism, but until we can establish those in a much more objective way, diagnostic categories are no better than lines in the sand, waiting to be erased by the next big wave.

    Also, I finally did skyrocket… I was 25. Little bit outside the supposed crucial window, no?

  8. Shannon Jenkins

    As always, your posts are insightful and enlightening and SO much of Emma’s earlier path reminds me of our past path with our daughter… and the accompanying regret.

    So, when do you think AAC should be started?

    My daughter, Kaitey, will be 4 in November & though she babbles with tone & inflection, she doesn’t point, sign or use PECS…. though we try these things (but don’t push them on her or force her).

    From what I’ve read, she’s a bit young still for RPM (seems I read 5-7)…. is there any AAC you suggest?

    • Shannon – I would have started with paper choices as per RPM and Soma’s books, using a yes and no laminated card, and honestly I would have looked into all the various things that are currently out there, most of which, I’m not even aware of, there’s so much now. I know there are lots of terrific apps for the iPad that require pointing, and I might have started there, just to get that finger isolated at an early age. And I would have taken Emma as soon as she was old enough to see Soma. Would any of this made a difference? Who knows. As Emma wrote, “You never can say for sure, so regrets are not needed.”

      • Shannon Jenkins

        Thanks SO much for this info. Ive seen Soma’s books online but thought maybe we weren’t ready for the info… but now I will definitely get the books!
        We have an Innotab tablet for my daughter & they are going to start using a GoTalk9 AAC with her at school… she’s not shown interest in the Innotab… right now she is most interested in studying flowers & pulling the petals apart and making large toy piles that she puts a great deal of effort, arranging, time & concentration into (we refer to this as her “art sculptures). 🙂

    • This blog makes the case that it’s important to start very early:
      http://niederfamily.blogspot.com/2014/02/aac-by-18-months.html
      and has some suggestions about other things to try:
      http://niederfamily.blogspot.com/p/testing.html

      • These are great links. I’d not seen this blog before, but for those who have a kid who doesn’t speak or are wondering at what age you should start looking into AAC devices for your kid, definitely read the above links.

  9. We still, to this day, don’t “get” how much Risa truly understands. We know it’s more than we give her credit for. When I think about all those years of talking about her in front of her….I just cringe.

    We know now that she will never be verbal, It’s part of her atypical Rett’s. At her new school I want to give them a list of communication methods to try. Her communication devices, she has no interest in. She does do a few signs and I would really like to concentrate on that. The only problem is if she eventually loses control of her hands, then what?

    Anyway, I’m rambling, but if you have any other suggestions I’m certainly open to listening and researching about them.

    Much love, Ang & Risa

    • Ang – the only thing I keep thinking when I think of you and Risa is how awesome it would be if you could find a way to see either Soma or one of the people who does RPM in Wisconsin. Did I invite you into the RPM group on Facebook? If not, I will. There’s lots of great material and information.

  10. Reblogged this on Autie Mom's Diary and commented:
    So well said

  11. I have said the exact same thing to my husband. “No one knows how to help us help our son”. I can’t believe it has taken me this long to realize that the real autism expert is my own child.

  12. I am glad that Emma can tell you that “regret is not needed” It’s a much shorter and to the point version of what I keep saying.

    That you admit you went down the same road as most parents and then rethought things. That even when you were well into rethinking things new information was being processed constantly that is how it should be for any topic so you are not just a good example of how to be a decent parent and a better blogger than the variety who knows everything there is to know about autism and always did. (and there are scores of those blech…) but a better human.

    Certainty about anything seems a bit of an iffy life course.

    I sometimes feel like I completely fail to benefit from having insider access to my own brain because of the huge number of things that I don’t connect to something else so at times I have downright refused to believe something could be helpful and only when it had been was how it related to other things even obvious.

    I don’t even benefit from a degree in how the brain works as far as regret goes all the time so maybe I should have the :”regret is not needed” tatoo. So it for sure is easier to say to someone else you did a better job than most at rethinking things than it is to give myself a break when I feel ashamed of something that happens that on a cognitive level I know the neurological basis but on some other level well it still seems very much like I would have preferred for it not to happen.

    Regret is not needed but it is a hard thing to prevent I guess. Still every so often you have to sit back and say well I got there in the end. Well in my case being allergic to certainty I would say I got close to there but still that is something to celebrate.

    I think I will with a bedtime bowl of icecream which may carry the allegey to certainty principle a bit too far because that’s about 4.5 hours after I meant for that to happen but oh well.

  13. To Shannon Jenkins: I just started TouchChat on the iPad w/my son. It’s costly @ $299.00, but so far it’s worth it. His speech therapist has been fantastic in getting him started on this app. There are “light” versions for less $, but most reviews just refer to them as teasers. We just went for it & bought the full version.

  14. I accidentally posted this as a reply to another comment, so I’m reposting it here:

    I’ve noticed a pattern in the way you describe Emma that, as an autistic adult with a lot of autistic friends, I think might be cause for concern.

    I worry about people with disabilities who are effusively forgiving. There’s often a lot of fear and self-destructive ideas behind that. I especially worry about people who have been through horrible therapy and who are quick to reassure their parents that it’s ok and that there is no need for regret.

    Maybe it’s a good thing that Emma feels that way and speaks that way, but to me, it looks like a red flag. Especially if she *always* talks that way and *never* expresses feelings or opinions towards you and your mistakes that are hard to hear or that you feel are unfair.

    You know Emma and I do not, but that pattern sounds like fear to me. That’s definitely what it would mean if I was talking that way. I think it’s dangerous to praise her for feeling that way. It could easily, easily give the impression that she doesn’t have the right to be angry and that she has to be forgiving and reassuring all the time.

    That happens to a lot of people with developmental disabilities, even when everyone means well.

    Does Emma know that it’s ok if she’s angry? Does she know that it’s safe to be angry and upset and that you’ll still respect her if she expresses painful or unforgiving feelings? Does she know that you’ll still help her type if she says things that you don’t want to hear? Does she know that no matter how angry you get, you will never, ever take her communication away?

    If you’re not sure, or if you haven’t discussed this with her explicitly, I think it’s an important conversation to have.

    • I deleted the first one in reply to someone else and am responding to this duplicate…
      This is a valid and insightful question. Except that perhaps what you are seeing as a pattern is less a pattern with Emma and more that I repeat things Emma has said a few times that remind me to try and not stay in regret because my pattern is to beat myself up over and over again for the things I’ve done wrong. The thing I quoted her as saying was actually not said to me, but to someone who asked if she thought she would have been able to learn to use Soma’s RPM earlier had she been exposed to it. So she wrote in response, “you can never say for sure, so regrets are not needed.”
      What I have learned and seen over the years is that my regrets actually are not helpful in moving forward and I owe it to her to move forward and not stay stuck.
      As far as your question about Emma showing anger or feeling she can or has permission to write anything she feels and wants – she does and has. She also writes with several other people and is not just writing with me. It’s more important to us that she has a voice than anything in this world. But this is one of those tricky issues about blogging. I have written about my own struggles, about the messiness of my life candidly, but these are not things I will reveal about my daughter, they are for her to discuss if and when she chooses to.
      They are not my stories to tell. One day she may choose to and when and if she does I will wholeheartedly support, encourage and signal boost whatever she writes even if it is a criticism of me. My job is not to be perfect, my job is not to never make mistakes as a parent, my job is to do the very best I can and encourage both my children to be who they want to be, not some mistaken idea of who they might think their parents want them to be.
      I really appreciate your thoughts on this, because they make me reflect and consider and that can only be a good thing.

      • Wow, what an insightful comment above. I give you full credit for examining and reflecting on your motives and thoughts so honestly! Such a hard process and it shows you are not fearful. I do often wonder if we are going through another era or version of the “refrigerator” Mum. Ie. in the past autism was due to a mother’s lack of interest and affection, and now autism can supposedly be cured by a mother or caregiver’s 20 plus hours of intense therapy. Both very cruel aspersions on mothers and both lacking understanding of the person with autism. I often think your blog is part of a swing to a more accepting and understanding view of autism.

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  16. Emma you are so cute! I hope we get to meet you all someday. I sit here and I am interrupted by Jacob asking me for milk off an old laminated board (no buddy, we have to stay away from milk), with me saying, “how about water?” He looks at me and points to the Pepsi icon (giggling), with me saying, “I don’t think so buddy, it’s late and will keep you up.” He is so funny Ariane! We just came back from the conference at ICI and unfortunately Jacob had huge breakthrough symptoms with had a ton of aggression. Jacob explained more about why on his Facebook page (Jacob Bradley), but basically the impulsivity and anxiety got the best of him! I don’t know what to expect these next few years, but I do know we will keep at it. Both Jeff and I feel it’s important to keep moving forward with our support, allowing full communication to happen by use of AAC. This is how we will continue to allow the best participation possible. It may not look like Sam, or Ben or whoever. It is Jacob’s journey. One that has a great purpose. Yes, the process has literally brought me to my knees, but the glory is there. Your words have helped us greatly on our journey and I want to thank you for that. Cheers to you and your wonderful family!

  17. This is why, as a special ed teacher, I often ask my kids on spectrum (as well as other students who happen to have a language disability of some kind or other), when they get at a loss for words, if they’d like the opportunity to be able to choose out a picture to show me what they want. Some say yes, some say no…. those that say no are just needing extra think time to find the words to say, usually. Those that say yes, light up as we go on a Google quest for JUST THE RIGHT PICTURE…. they echo me as I use different words to search, and once they get the pic they want, they are happy… quality, organized time with an accepting and approving adult, a resource printed out and ready to go if they need it… AND many people on Spectrum are better at keyboarding than at speaking, so after a while, as their skills develop on keyboarding, a kiddo will grab a laptop and go on their own google quest to show me the right picture, or will open Word and start writing me because the words happen when there’s no interaction pressure. A combination of picture access when under high social pressure in direct contact with other people, and increasing word-based language based on student interest in low pressure, does wonders.

  18. Thank you for writing this. I am so afraid of doing the wrong thing for my son. I am terrified of not helping him. For a while, I trusted the “experts,” too. After ridiculous suggestions such as putting him in restraint holds, forcing exposure therapy, and holding off on homeschooling, I am done. In our home, we practice respect, acceptance, love, and patience. I was very disappointed, even repulsed, by the emphasis on forced instruction in therapy. Thank you for sharing your journey and for empowering parents to love and celebrate their children as they are.

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