Trigger Warning: Parental despair
Five years ago I was in a bad, bad place. Life felt unbearable. The future loomed ahead shrouded in fear. I could not imagine a life that was not bleak and filled with pain. There were times when I could not bear the thought of another day. There were times when I felt it was all too much. People would make kind suggestions, but none of their words made sense to me. I was sinking and saw no light. I thought it was because of my specific circumstances. I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her. I was told she couldn’t comprehend this world. I was told concepts like less and more, time, currency were beyond her ability to grasp. I was told she was in her own world. Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children had.
I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed… There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry. I cried for myself, but I also cried for my child. I loved my child. I ached for my child and what seemed to be her inevitable future. Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being. I had fantasies of “heading north”. I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.” Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing. There was a part of me that meant it. I wanted to leave all that pain behind me.
There are those reading this who will cringe at this description. There are those who will judge me and what I once felt. There are those who will point out how self involved all of this sounds. They will say, but how could you not see that what you were feeling was affecting your child? There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror. I understand those responses too, because now, I catch myself feeling those feelings too.
My daughter has defied everyone’s expectations, including ours. She is writing now.
She is writing such incredible words. Sometimes a sentence may take her five minutes to construct. I would cheerfully sit for thirty minutes or however long it takes for her to express herself. Parents hear about my daughter and they say, “Ah, but my child isn’t like that.” And so I ask, “How do you know?” Parents say, “I know my kid. He/she isn’t able to understand.” I once believed that too. And so again I ask, “How do you know?” Parents say, “I know my child better than anyone.” I once said this as well. I thought I knew. I believed what others told me. She would laugh and then run full force into a cement wall, using her head as a batting ram. We would get the dreaded phone calls from her school. All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.” “She does not know the value of a penny.” “We will continue to work on sight words.”
Today my daughter is enlightening me. If you want to know more, read “How We Got Here“. Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.” Her school is now trying to learn RPM so that she can write with them too.
I cried when she wrote that. I cried because I didn’t know until recently. I cried for all the years when she had no way of telling us. I cried for all the times I didn’t believe. I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams. I cried for every single parent who has ever felt the way I once did. I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them. I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.” I didn’t dare hope that one day my daughter might be writing the things she now writes. I didn’t dare hope, it hurt too much.
To the parents who feel overwhelmed with fear and despair – I was once just like you. Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant. I’m grateful now that I didn’t find such a group because there’s another way. I found another way, but not before making many, many more mistakes. This blog documents a number of the mistakes I’ve made over the years, but not all of them.
If there’s one thing I want to say, it’s please, dare to hope. Without that we are all lost.
*As always, I asked Emma for her permission to publish this post.
Wretches and Jabberers
Mark Utter’s I am in here
Ido Kedar’s book: Ido in Autismland
Non-speaking Autistic blogs, many of which can be found on The Resources Page on this blog.
Ariane this makes me so happy!
I always say “Life is good and life is
Thank you so much Mara. This was one of those posts that I felt tremendous ambivalence about actually publishing. But when Emma gave me the go-ahead, I thought – Okay, then…
Ariane I have cp and many ppl told my mom I could be smart. GUESS WHAT I don’t walk very well but I talk, learn,Masters Degree, and live on my own in my own home with my husband and most of all am happy. I hope the same to Emma
I like the look in Emma’s eyes, and on her face. The self-composure expressing bodily. A powerfully maturing person evident. All as she readies to write.
Thank you Colin. I always think I’m biased as I’m unabashedly so taken with her! Always love hearing others who reflect what I see too.
Thank you for writing this, Ariane. ❤ To your hope, I want to add "dare to believe" – it was your and Richard's relentless belief in Emma that helped her find a communication method that suits her. She's lucky to have both of you.
Thank you! We feel so incredibly lucky to have her as our daughter.
Ariane and Emma, I hope that I live to see the days when autistic people and their supporters no longer feel compelled to spend their largest effort convincing the rest of the world of their abilities and intellect. Such tremendous cognitive strength as Emma’s could be used to impact whatever field (and pursue any dream) she chooses. She is full of great things, and I hope she gets do those things without wasting all her precious words to convince the heavy current of doubters of her abilities.
I completely agree with you Lara! That day cannot come quickly enough.
Ariane, so sorry about all the pain and blame you went through, but it was all for love of your daughter, and so in retrospect it must somehow have been worth it. Certainly the outcome speaks loudly, and not just for Emma but for all families that are struggling, having to cope with the outside world, the world that seems uncaring, unknowing, not understanding.
Your blog has done so much for both Autistics and Neuro-Typicals. Keep up with your good work, both you and Emma. Between the two of you, supported by Richard and Nic, you are changing the world one person at a time.
Love conquers all.
Aw… Mom. Thank you. 💕
Watching you find hope and watching Emma blossom in that hope has been… closest word I have at the moment is significant. like a random beam of light on a dreary day.
Aw… what a lovely thing to read. Thank you for this thought Savannah.
You know, it seems that not only is autism itself a spectrum, but there is also a spectrum of parents. I read your post today, but last night I read this post: http://theconnorchronicles.wordpress.com/2014/04/30/the-hidden-autism-community/ Just making an observation, not trying to cause any trouble.
This post was in response to that post actually. Someone sent me the link to that post last night and it was so upsetting it kept me up all night thinking about it. Mostly I kept coming back to how I once was in that hell that so many of those people commenting seem to currently be in. I had no idea I’d ever feel differently. I could never have predicted what my future held, let alone my daughter’s… and as it turned out, I was wrong about everything.
I find both of you to always be inspiring. You are a wonderful MOM and don’t ever forget that; the road is hard but look at what your journey has brought to you and what it has done for Emma. There are many willing to listen and to support you as you sally forth. Emma is lucky to have a strong advocate in you. You are an example to her of how to advocate, a skill she will learn and someday be able to use in her own interest. I loved watching Emma in the video, it must make your heart proud not only to read her words but to hear her voice (literally and figuratively).
It does make me proud, Martha. Every single day. So proud of her.
That is a very important topic. I myself write about my Sophie (just a small little blog) but I am always a little torn. I know I shouldn’t be- but yet… Sophie is doing WONDERFUL. However, I sometimes worry (I know I shouldn’t worry what people think. But I do) that people will either dismiss her as an “anomaly” or say its one of those “rainbow and unicorns” type of blogs (which apparently is the thing to call positive blogs). That we’re not “real”.
I write primarily to dispel myths about nonverbal autism and to offer people hope, what your blog does for me. But then I see that most people are really struggling, they don’t want the hope or the positivity, they want the bleak and the despair, because that’s “real life” and I’m confused- am I missing something? Did we just “get lucky”? Or is there more to it than that?
But I do think that the mainstream viewpoint of autism, from doctors, media, therapists, the first people the parents turn to when their child is diagnosed is partly to blame- that is the source of a lot of the despair and that’s where the change should begin.
If parents were given an entirely different perspective upon receiving their child’s diagnosis, if society viewed autism as difference and not an endless list of deficits, if all professionals in the field were trained differently, if every school used RPM, if parents were given respite and help, right away, hands on help and training in how to best communicate and cope with their children, parents would see their children differently and so much of their despair would be eliminated.
I know. What am I thinking?
Oh yeah. I was told by the doctor that diagnosed my son (at 22 months) that she would “have more hope if he imitated”. Then we were offered a list of ABA therapy providers in our area. So, I totally agree that how autism is presented to parents (and the rest of society) really needs to change. And parents need to be given better resources at the time of diagnosis. Wouldn’t it be great if there was some sort of mentoring system for parents? Like, parents who have older kids could pair up with parents of a newly diagnosed kiddo. How much would things change then?
Ariane, thank you for your honesty and inspiration once again! I have also had those feelings and fears that you once had and truthfully if I hadn’t found your blog I might still believe that Olivia doesn’t understand or she is “in her own world” Now I have a totally different view and I am sure she will be able to show us, as Emma has, how much she knows and her thoughts and feelings someday. I have Soma’s book and I am planning on starting RPM. I also found a tutor that trained with Soma that we are going to work with over the summer! Thanks you for helping me Dare to Hope!!!
Oh this is so wonderful to hear!! Please, please keep me updated!!
Great to read Ariane! As you know, I was there too and like you now, I have so much hope for Philip because of his ability to communicate with his letterboard and iPad. It was a good reminder to me not to judge the many parents who are still in the pit if despair. How can we help? Like you, I will keep telling our message of hope and pray people will find it and dare to hope for their children too.
That’s all we can do. Keep telling our stories. This method needs to be available to all children, in all schools, all special education teachers need to learn it… slowly, slowly it will spread.
I love you so much. You are and always have been a constant inspiration. Emma and you and Nic are my biggest heroes and greatest loves.
Aw.. honey. 💞
needed to read this today. i love you ariane. in case you don’t realize how incredibly amazing you and you family are please hear this…YOU ARE TREMENDOUSLY BRIGHT LIGHT FOR ALL WHO NEED YOUR WISDOM AND FORTITUDE.
(((imaginari1))) Thank you so much. ❤
What a wonderful post. I can most definitely relate and have “been there” in my own time. Keep writing and stirring up hope for the hopeless. Our testimonies can help people endure their tests.
The truth is that there is a lot of grief associated with losing the child you thought you were going to parent. A dream as been crushed, and it is certainly part of the process to be extremely upset and despairing. The wonderful thing is that a new dream has been born. The sooner a parent can learn about the new dream, the sooner they can can heal, and begin to help the unexpected actual child who is waiting. The best help you can give is the teaching you are already doing, letting people know that having an autistic child can be a lot of fun. Even before your child starts to communicate her remarkable intelligence, there are small quiet miracles that bring a lot of joy. None of us know the potential of our children. The constant surprise is half the fun (and the pain) of parenting. Being able to relax and trust the process is a gift that takes a while to develop. Even though our daughter is forty and still “severely autistic” and she still needs hands on support to type, she is learning and growing every day just as we all are and it’s a privilege to be a part of her life. Because she was adopted at age seven we were not surprised by her autism. Still, the reality of living with the total dedication required was a shock. We outgrew the shock as most parents eventually do. The surprise, shock, and despair are so normal, and the best thing to help is another parent who has been through it and who has come out the other side. The other best help is a voice of an autistic person who is learning and growing and who can say so. Ariane, Emma, and Richard, thanks for your healing influence.
This is a beautiful and wise comment Marie. Thank you so much for leaving it here.
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I feel very happy for her!.
With some patience and effort she will improve her skills!, I’m Hoping!
thank you so much for sharing this ❤
Wonderful post and I will say this: Even with a kid on the spectrum who HAS been communicative and who has had mild to moderate behavioral/sensory issues, the WRITTEN WORD REALLY MATTERS. I remind my daughter all the time that when we hit a wall verbally that we go to email to sort it out. It works quite well. Not all children will obviously be able to get this far. I get that. But in their presence (and we know a few) we always assume they hear us and are responding as best they can.