Tuesday, October 1, 2013

"Nothing Has Changed" When It Feels That Everything Has...

My brain has been slowly chugging along these last few days, and of course, at the moment, it's hard for me to think of anything other than the big looming change that feels as if it has rolled across our lives. So while I do plan on writing about faith and recipes and crafts and all the things I normally write about again soon, I'm sure there's going to be a period when much of what I'm processing and thinking about all the time, is what's going on here with Mae.

I know I've gotten questions about the signs along the way, because people are curious about how I was sort of blindsided by this, and this post might answer that in a round about way.  But really it's mostly train of consciousness... and so... here we go.

The most frequent comment, which I know is absolutely given with good intentions and meant to be comforting, that I've received since we got Mae's diagnosis is that I need to remember that she's the same little girl and that nothing has actually changed.

And I'll admit that my response to this each time I read it is a) feeling guilty because I know what's meant and that it's advice given lovingly, followed by b) a stomach twisting, knee jerk reaction that says "yes to a, no to b."

What I mean to say is that yes, I absolutely know she's the same little girl.  She's my heart.  She's one of the most amazing people I've ever met, with her exuberance and energy, her love and passion for life, and of course, her fearlessness.  I cannot put into words all that Mae is to our family.  She's amazing and exasperating, often at the same time.

On the other hand... to say that's nothing has changed... is not how I am experiencing this at all.  Maybe some moms experience this news as though nothing has changed... but I know that I am not one of them.

I know what you're saying (and this isn't directed at anyone in particular, because like 60 people have told me this and I do know what you're saying and what you mean... this is just my visceral reaction each time I read/hear the words...), but honestly, as I go through this in many ways it feels like a lot has changed.

You see (and this might explain the other questions that have come up, since I've described the things we noticed as "quirks") I just assumed we were smack dab in the middle of the terrible twos.  Especially dramatic twos.  Twos that started at eighteen months and had now dragged on into the threes.  After all, two year olds are pretty wild.  They can be climbers.  They have tantrums.  The list could go on and on and I could explain any behavior as "just being two."

I kept waiting for the wildness to ebb.  For the twos to give way to something calmer.  I was waiting for her to begin to have a concept of danger.  There's a picture that I have of me and the kids that I've used a lot on the blog. It was taken while we were out in California and we're looking at the raging river that goes by my parents' house and Mae is on her leash and after the picture was taken I looked down and she had bent to take off her shoes because she was ready to jump off the cliff into the water below.

Ready to go for a swim.
She's fearless, we'd say.  It's like she doesn't feel pain.  At first we'd shake our heads and those words would feel like a joke, because surely she felt pain, but more and more of late I began to seriously wonder.

When that swing slammed into her throwing her across the playground and she bounced up laughing it really began to sink in.  That blow should have hurt.  I ran to her thinking we were going to be calling 911.

 And she smiled up at me, not feeling a thing (in retrospect I probably would have taken her to the ER if I'd realized at that point that she really wasn't feeling pain... but at the time we still were just recognizing the puzzle pieces and hadn't yet begun putting them together).

After the doctor suggested that she was on the spectrum I checked out Doctor Sear's book on Autism and after reading through the symptoms my mind reeled.  I had this stereotype in my head before this all began.  When my kids made eye contact when they were babies I figured they weren't on the spectrum, because that's what they tell parents to look for, right?  Sure Mae can ignore the whole world for hours, but she also laughs and stares into my eyes and laughs some more.

While Sadie was at swim lessons a few weeks ago I sat down and made a list of things that I was now discovering weren't normal for a three year old.

The list covered an entire piece of paper.

Jumping on the bed for four hours. Not feeling pain.  Her clear sensory issues.  The teeth grinding that had me begging her to take her binkie back.  Repeated motions, like sitting and stroking my hand over and over again for hours.  The list went on and on.  I wanted to write it all down before we met with the counselor and she asked what I was worried about an my mind went blank with the overwhelmingness of it all.

How could I have missed so much?  Well.  That basic desire for everything to be "okay" can rule out quite a bit.  Oh I know, we're going to be okay, a new okay, a new good even... but still it's easy to gloss things over when you really, really don't want anything to be "wrong."

The diagnosis came, with a roller coaster of emotions from being glad we'll be able to find ways to help her (like the knowledge to eliminate foods that I'm finding really effect her), to being frightened any time I look towards the future, to an ache in my chest that just comes and goes.

In a way it's a great blessing.  Since even the possibility of the diagnosis appeared on the horizon, and I was presented with the idea of knowing that her brain works differently, my patience has been greatly extended.  I can tell myself now that she's not just being obstinate when she's in a mood.  And that goes a long, long way.

But to say nothing has changed does not fit with the reality I'm now facing.  A lot has changed.  I'm no longer clinging to the delusion that the "twos" are suddenly going to fall away and leave me with a totally different, tantrum-less, kid who suddenly realizes that deep water is dangerous, that traffic can kill you and that you can't run in front of that swinging child because you could get seriously hurt.

I've been waiting for the age to arrive when she wouldn't just run and run and run without looking back at me, always laughing when I catch her, but never worried that I might not.  I'd been holding my breath for eighteen months, waiting for this stage to end, for it to get easier, for her to begin to listen and recognize danger and now I realize that I don't know when that will happen, but that it might not be soon.

I don't feel like this is a tragedy, and I hope I'm not making it sound that way in my rambling.  But I do feel like life has drastically changed and like I haven't quite gotten my feet back under me.

I feel extremely blessed to have been given this sweet little girl.  And sometimes, I feel a little overwhelmed by the weight of the responsibility of guarding her from harm, and I worry about the future before pushing those worries away with a prayer.

So we move forward knowing that God will give us the strength to face whatever comes and that his blessings in this life are often found in the unexpected... and by praying that we are able to accept those blessings gladly, with open arms, when they arrive.


  1. Change is definitely challenging. I'm not sure where Mae falls on the spectrum, but this girl Carly has some really interesting stuff: http://www.youtube.com/watch?v=KmDGvquzn2k She was thought to be not so intelligent because of her autism as she is non verbal and then she learned to type. Very cool story. http://www.youtube.com/watch?v=vNZVV4Ciccg

  2. Please do not try to curtail you grieving process over this. You do not have to be "over it" on anyone's schedule but your own. And probably part of you will never be "over it". Grief is a continual process, and taking the time to grieve does not mean you love her any less. Praying for you all!!!

  3. How do you miss the signs?? Easily. Seriously, I mean that. When one is in the middle of day to day life, raising kiddos, moving, etc. (Been there and done exactly that!) seeing little quirks in kids becomes the usual. After all, kids are kids. When I finally took my daughter to the vision therapist at age 7, I realized that the signs that she had a problem were evident - except I didn't know they were signs of a problem vs. she was having problems learning to read, just not at all coordinated, couldn't learn left from right, etc. So many signs easy to explain away until I saw them as a collection and not isolated things. In fact, I finally took her in because she would scream and throw the book away when I tried to get her to learn to read the word CAT.

    And, you know what? I would bet serious amounts of money that there might have been times here and there you wondered a little about some little thing.. but then a book or doc or friend says "Oh, that - so and so did that, no big deal" And then, of course, we breath a sigh of relief and continue on. Only to find out later that what we were seeing wasn't really normal, it was worse than so and so thought, etc. My daughter - now at the age of 14 - is DRIVEN, and has been for years and years to run/gallop around in circles EVERY. SINGLE. DAY. She will talk to herself, giggle to herself, etc. while "circling (our family phrase for it) When she was little everyone said she would outgrow it. She hasn't. I would tell doctors about it, and consistently hear "oh, kids are active" but humph - what she does is not normal. My mother, with the patience of a saint, would get bothered by the ongoing circling - and for HER to be bothered by a grandchild is saying something!

    Things that were issues years ago, still are. Of course, she has matured in some ways, and yet... she does things that just amaze me as they demonstrate her thought processes. She doesn't learn at all well from past mistakes and problems, and we fight the same issues over and over and over.

    Elicia's comment about never being "over it" has much truth. I still to this day find myself sad that DD isn't quite "normal" whatever that is...

  4. Thanks for writing about all of this. It can't be easy putting all of this out there for the world. But I'm sure it will help other mothers who are going through the same thing and I'm sure just writing it all down will help you sort out your feelings and emotions.

    Praying that God will give you all exactly what you need and when you need. Praying for peace and comfort as you guys are starting this new journey with Mae.

  5. I think you hit the nail on the head with that post. Your present life hasn't necessarily changed because of the diagnosis, but your expectations for the future certainly have. I pray that with your loving care and guidance and the help of professionals, Mae will make strides and surpass all expectations.

  6. It is easy to overlook some of the "quirks" you mention, as there are "normally developing" children who share some of them.

    Our little grandson, Ben, at 2 1/2 and not that much younger than Maggie, is also frighteningly fearless and has no judgment whatsoever; he would have no idea that he shouldn't walk in front of a swing. He also doesn't often react strongly to "boo boos"; it seems he just doesn't want to stop moving long enough! (He is, however, a non-stop talker and doesn't exhibit the other behaviors you cite.)

    So, don't beat yourself up over "missing" some things that also occur with many other kids. You've done a great job with her, and will continue to do so.

    With regard to GAPS... while there is much to be said for eating fresh, home-made food, I (and many scientists) am skeptical in the extreme about "miracle" diets. Be sure to take advantage of enough of the allowed carbs, and watch for any adrenal gland issues. As if you didn't have enough to deal with!!!

    God bless!


  7. She may feel pain but her response to pain is to laugh. I recognize it because I do that too. In martial arts a kick or punch that hurt would give me an instant adrenaline style rush and I would laugh and fight faster. This unnerved my opponents. Pain wakes up my brain and I can go from smart to SuperDrive, my thinking speeds, my senses sharpen, a feel fiercely alive and can move faster and with greater coordination than usual, it is a useful response in a crisis, but when faced wi a fall, I laugh and people figure no pain, but it is MY response to pain, laughter. Pain brings out my sense of the ridiculousness of life, so with a fractured tailbone, fractured rib, and a quarter of my body black from the bruising (car wreck), I was joking with the paramedics who put me on her stretcher, and with the emergency room people who did the scans to check for internal bleeding. It HURT, but the pain tickled my funny bone. Just so you know, she might laugh at pain too. It is common, and I cringe each time the neuro typical experts say no pain!

  8. Mae is a very lucky girl. She will grow up knowing she is different and that this is ok. She won't grow up wondering why she is not able to be like other people, she will learn and grieve it and move on, attaining adulthood with understanding that this is an aspect of who's she is, learning to use the aspects of her differences that she can, while modifying her behavior when it serves her to do so. You will all be ok. Do let yourself grieve then go read Aspergirls and Temple Grandin's book about the AUTISTIC MIND, and discover the up side. My prayers are with you. Facebook if you want a phone number for me.

  9. Us parents aren't doctors, I have experience working with kids on the spectrum and still missed the signs with my son. Don't forget that whilst the changes all seem very hard now, a few years from now you will notice call the positive gains she has made from this point and no matter how small they are they will be oh so special. My son also has pain processing issues ( from stitches with no anaesthetic due to no pain to screaming over a light touch), it can get better with training and better body awareness but for now hyoervigilance is your best tactic.

  10. Very very nice job on expressing yourself, and all the thoughts and feelings that go along with a diagnosis, on that post. Very brave, understandable and relatable, and I'm sure there is at least one mom who will be helped by your beautiful piece, now or in the future.

  11. Your dad kind of looks like Patrick in this picture...


  12. I've associated with Dave for 15 years; he's the third of 7 kids, my Goddaughter is the fourth. I've read dozens of books and studies, and have had long walks and talks with Dave. In his 20's now, he's very aware of his problem, although not always able to control it. He describes it as being behind in thoughts -- his travel from topic to topic slower than others, and he often finds it difficult to find the right words to speak. And he gets mad, very mad sometimes.

    Most of what I read focused on autism as a communication issue, within the self and to others. Studies are all over the place, but one I never saw disputed was that feedback in early youth was critical, and "television babysitting" (no feedback) may contribute to early onset --- and withheld, has markedly improved some.

    Have faith; have hope. She is just different --- so are you.

    1. Autism is just as common in adults as it is in kids (a British study confirmed that). So it's not a generational thing, whatever causes it.

  13. I've just read this, only a few weeks following my four year-old daughter's autism diagnosis. I can relate, though it took us much longer to arrive. And my husband is a pediatrician. We still felt blindsided by the diagnosis because we had brought up concerns since she was two months old, only to be told that we need not worry. We knew, and yet we didn't know. And I was drawn to this post because a couple of days after the diagnosis, I said to my husband, "It's like nothing has changed but everything has changed." Thank you for writing.


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