Tuesday, April 1, 2014

I Gave Myself a Day

Last Monday, my husband and I got the results of K's latest neuropsych testing. It was an hour of listening to someone highlight all of K's struggles, and realizing that things are worse than we thought. She's our kid, we aren't blind to her issues, but we also see her through a different lens than a stranger. We've adapted ourselves so much to her needs, we didn't realize just how affected she is by the autism-induced anxiety she deals with each day. Especially away from home.

Unlike most people, I usually go into these meetings thinking we'll hear really positive things. Don't ask me why. I am not in any sort of denial, I just always think that maybe my parenting skills are lacking, making things seem more difficult than they actually are. So, in reality, K is OK, I just suck at what I do. I guess it should be a relief to hear things are even worse than I thought, but I wouldn't mind being told otherwise, just once.

Every time we have some sort of testing done, the doctor confirms the autism, and each one seems to think it affects K more than the last. Yes, she's made tons of progress over the years, but with age comes new challenges. At 10 she is much more affected  by them than when she was a toddler, or in early elementary.

Everything is overwhelming for her. Everything. That is what the doctor told us. Her anxiety is so bad, she can't access anything. It will most likely always be that way because the anxiety is tied to the autism, and though medication might take the edge off, we'll never see a big change.

She's falling behind more and more academically. Nothing motivates her, because even the prize at the end isn't worth the hardships to get there. We need 15 hours of home ABA, a new school, but what any of that will look like? No one can say.

She's not at the point where she can understand social pragmatics (can I get a refund for all the years of social groups we've done?) She has no coping skills, just maladaptive behaviors. Though she has a good vocabulary, she's a "reporter", and cannot hold conversations. Not the type of conversations she should be holding at this age, which was driven home at a birthday party we attended this weekend, where I was surrounded by typical 11 year olds. Heck, it was even driven home by the other girls on the spectrum at the party who are just leaps and bounds ahead of K in a lot of ways.

I used to ask each doctor what they predicted for her future, but I've stopped doing that. I'm too afraid of what they'll say now.

There's more. So much more, but we don't have a paper report yet, and I can't remember everything. My head was swimming when we left. I just wasn't prepared.

It is truly sad to hear all of your child's weaknesses pointed out at one time. It's sad to know how affected she is by her diagnosis. It's sad to sit at a table and know that no one has any idea what kind of school she needs, or how to really help.

So I gave myself a day. A whole day where I wallowed in everything I heard at that meeting. A whole day where I cried over K's future, and the fact that, at 10, no one knows how to best help my child. A day to lament the fact that all the therapies we've done have been far beyond her, hence why we never saw progress (we just didn't know.) A day to curse the gods for making life so difficult for my beautiful girl. A day to be angry at the public school that let her fail because they just didn't see how bad things were. They made assumptions about what she was capable of doing, and those assumptions were just so, so wrong.

One day, and that was it.

I don't think feeling sad is a bad thing. I don't think I'm a bad mom for taking a day to cry over everything the doctor told us. Yes, K is still K, and that is something I don't need to be told. I don't need to be told it's OK, or that it's just a piece of paper (or someone sitting across a desk, ripping your heart out.) I don't need to be told anything by anyone. I just needed a day.

Now things are back to normal. We do what we need to do for our daughter, without getting bogged down by what "it" all means. I continue to enjoy the girl I know, and see the best parts of her, because there are oh-so-many best parts. I continue to let K lead me through her life, because it is her life after all, while figuring out how to make that life as happy and fulfilling as possible.

You can choose to be consumed by information and test results, or you can choose to just enjoy your kid. Take the time to be sad. To cry. To vent your frustrations. But don't live in that place. Never, ever life in that place.


  1. I'm so sorry to hear you got such tough news from the neuropsych. Is it a different doctor than the one who did the last test on K? Did he have any suggestions on what might help K learn to manage her anxiety?

    And if he had no suggestions on treating your girl's anxiety, can he at least refer you to somebody else who might have some?

    As a person with a severe mental illness, one that runs in my family, I refuse to believe that there is nothing out there that can help your daughter -- it may take a ton of tries to get the right medication cocktail / therapist / regime of crystals or whatnot to dangle above her bed, but someone, somewhere has something that can help.

    (Getting my meds sorted was pretty straightforward. My baby sister? Not so much. It took a ton of tries and multiple hospitalizations... But it was worth it. She was worth it -- and is now a happily married, 27 to social worker. Had she or my parents given up after the 11th not quite right med combo or 9th bad fit therapist, there's an excellent chance she would not be here. Or have achieved anything approaching her full potential).

  2. Absolutely, if you don't deal with your sadness, if you gloss over it, that is not going to help K. So you absolutely have to feel how you feel and allow yourself those feelings. I hate these kinds of appointments because all these reports contain are problems. I feel exactly the same way when my daughter is evaluated (which we are in the process of now and will have a similar, no doubt meeting at the end of the month).

    All that being said, I just read your last 3 or 4 posts in one sitting and they are FULL of positive things. K's great birthday, your conversation on the floor with her. While there may be no easy answers, do know in the little picture there is lots to be grateful for.