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Monday, October 6, 2014

Keeping on blogging, even when it's hard to do

Over the seven years I've had this blog, I've almost never NOT felt like writing for it.  Even on the worst days, writing was something that helped.  This past week, though, is the very first time I've had less than full enthusiasm for writing here.  

I've noticed, in reading other autism blogs, that most of them deal with kids making a lot of progress.  I don't think this always means that every kid with autism DOES make a lot of progress.  I think it means that when the progress stalls, the writing does too.  It's easier to feel excited about writing when there is something new and exciting your child is doing to talk about.  I think this is also one of the reasons that there are less blogs out there featuring kids with low functioning autism (and yes, I do hate the term, but for now, it's the term that will let people understand what I mean).  Another reason of course is that LFA doesn't leave a lot of time or energy for blogging, but it's more.  I think people want to write encouraging and upbeat things.  They want to help others.  They want to give hope to those with newly diagnosed kids.  When that gets hard to do, it's harder to find a way to write that feels useful.

The past year with Janey has been a very discouraging one, overall.  After starting her 3rd grade year with enthusiasm and excitement, after looking forward to her being part of a brand new K-12 pathway at the school I loved, after having high hopes when she showed signs of being able to read---things felt like they came crashing down.  Janey's behavior escalated, and I gradually had to accept that the school she was in was no longer the right place for her.  Sometimes I feel like it's only now it's really hit me.  Although I know I'm being a little dramatic in saying it, it's hit me that she couldn't be included in a school called a total inclusion school.  That was and is tough.  

Janey's behavior has changed in quite a few ways over the past year.  It was about a year ago she first started biting her own arm, a behavior that now shows itself almost every day.  She also started lashing out by pulling people's hair, scratching them and occasionally biting them.  This doesn't happen all the time, but it happens enough to put people around her on edge.  The screaming escalated to a new level.  When Janey screams now, it's absolutely incredibly loud and horrible to hear, because she sounds like she's in extreme pain.

If I'm totally honest with myself, I also have to say Janey talks less than she did a year ago.  Sometimes I make myself go back and read old blog entries, where I often quote things she has said, and she is not currently talking as well as she did at almost any point in her past.  Her speech at this point is either requests or quotes---almost never anything else.  The requests are only in regards to food, videos, sleep or hygiene (wanting a shower or her hair brushed, things like that).  The quotes generally have nothing to do with anything actually going on.

Janey's sleep is also often very disrupted.  It comes and goes, but there are often two or three weeks in a row where she wakes up every night at 2 or 3 am and doesn't go back to sleep.

I have to admit it---I'm depressed and discouraged lately.  It's hard for me to be encouraging in my writing.  It's hard for me to look at the bright side of things.  

However, I'm going to keep writing.  I feel like I have to, for myself, for Janey and for the other children out there with low-functioning autism.  Unlike those with higher functioning autism, children like Janey are not going to write their own blogs (and I know there are rare exceptions, but those are children who HAVE found a way to communicate, which means they CAN speak for themselves, and it is great they can).  I want to be the voice Janey can't be.  I want to be honest about her life, and our life.  I owe that to her.  I want to be a voice for the kids like her---the ones that don't make for conventionally uplifting writing.  I want to do that because despite that, she is a person of value, a person with just as much importance and just the same rights as any other child.  If I don't write the truth about life with her, I am hiding who she really is, and who she is is not something that needs to be hidden.  I love my daughter more than words can ever say, but I'm going to try to keep using words to give her a voice.


Shanti said...

I think it's really important that you get Janey's story out there. Mild and slow regression is far more common than it is generally recognized and it should be an important part of autism research. Thank you for sharing your family's story

Kerrie said...

Susanne, I have been reading your blog for a while now and I read because you are an excellent writer and you have something unique to say. No one else is writing like you are. I have no experience of autism so my reading of your blog gives me great insights. Best wishes

Unknown said...

I have been following your blog off and on for a few years now and I always always always appreciate your story and the realism of your words. I commend you highly for the strong person you are.

K oneil said...

Hi - I've been reading your blog for a while now and am always so impressed with your writing, your honesty, and your resilience. I read something to night that made me think of you. I know it can be annoying when people make suggestions and you have already tried tons of things, so I apologize if this is not helpful. I read a journal article of a study done at Harvard with Auditory Motor Mapping to help nonverbal asd children with speech. The technique focuses on the use of music. It seems that they are currently enrolling children in a further study of this at Boston .university. The journal article is.
Auditory-Motor Mapping Training as an Intervention to Facilitate Speech Output in Non-Verbal Children with Autism: A Proof of Concept Study

Here's a link to CARE (Center for Autism Research Excellence):

Suzanne said...

Thank you SO much for that information! I just now submitted an initial interest form to the research team. I hope they contact me soon. That sounds EXACTLY like something that might be helpful to Janey. I am always very happy to have people give me ideas. The more ideas, the better. I thank all of you so much for your kind words. I can't tell you how often I go back and read kind comments such as these when I am feeling discouraged. It means the world to me to have your support, and to think I might also be providing some support.