The Struggle is Real

As the parent of a child with learning needs, I know I am not alone.  Thanks to social media and the blogosphere, I see daily the struggles many of my compadres experience.  But some days, there comes such a shit storm that you feel so totally hopeless and alone.  I am feeling that today.

My oldest daughter is a freshman in high school and is newly diagnosed with inattentive ADHD.  For those of you who aren’t familiar with this diagnosis, think of it as hyperactivity turned inward.  To look at her she is a calm, albeit shy girl.  She is not defiant or hyper, but the storm is in her brain.  She cannot turn off the world around her, which results in her being distracted and unfocused.  When this is untreated, she becomes anxious because her brain cannot process and prioritize the information being given to her.  The result is that she melts down and becomes immobilized—you can actually see her physically become unable to function.  To add to this, she is stubborn as hell and cannot ask for help.  She has not been able to ask for help since she was born.  This is a child who defiantly refused to nurse, refused to sleep, and refused to learn how to tie her shoes.  She actually devised a completely new way to tie a bow, simply out of her stubborn refusal to ask someone to help her. 

This behavior was cute and excusable when she was younger.  “Oh, she’s just shy” I’d tell people as she’d run away mid-sentence, off to do something else or focus on a shinier object.  But now that she’s 14 and looks like an adult, this behavior has gone from cute to embarrassing.  Which makes me angry at myself for being embarrassed. 

Today’s particular incident has to do with the fact that she’s failing English—a subject she normally excelled at, but has become difficult because her high school teacher doesn’t offer too many grades and opportunities for her to stay accountable.  She is great in subjects where there is homework and an opportunity for her to earn points—the point system is the greatest invention for kids with learning needs.  Goals and rewards are huge in our family.  However, there’s no immediate goal or reward in this particular class, which leads to inattention and a lack of focus.  So I got upset with her, and probably said some things that I didn’t mean, such as I was tired of having to go to bat for her when she quits everything she starts (dance, karate, basketball, many musical instruments, track, drama. . .the list is endless) and that high school is something she cannot just stop paying attention to and quit. 

So after all of this, I spent all night worrying about it, and went in to talk to her advisor.  I am not alone, apparently, and her school has classes that can help her learn how to make lists and focus.  And maybe her meds need to be adjusted, and hopefully we can get this part back on track.

This experience just goes to show that there is no “cure” to attention and learning issues.  This is a lifelong struggle and isn’t fixed with just one or two things.  It’s a perpetual game of whack-a-mole, trying to find the secret sauce that will work with her brain chemistry and personality that will help her get on track.  Like the parent of a child with Type 1 diabetes or some physical malady, this isn’t going away, and it’s a daily game of figuring out what will work for that particular moment.  Like blood sugar gone awry, brain chemistry is that way too for many.  And I feel so behind that I didn’t see the signs sooner, and beat myself up on a daily basis that I waited so long to get her help.  Mostly because I was focusing so much on my other daughter, which I’m getting to…

As if I didn’t feel bad enough this morning, it has come to my attention that my other daughter, already diagnosed as a dyslexic, also has some kind of attention problems.  These are becoming more pronounced in the fifth grade, where the stakes are higher and the responsibilities larger.  She is forgetting homework, assignments, and other critical elements of school.  Her teachers, just one month into the school year, are tired of having to remind her of things, especially when they are doing so much to help her with her reading, spelling and writing.

So we have a new strategy in place and I’m putting a plan into action about having her evaluated for an attention issue.  And again, I feel so utterly defeated as a parent for passing along crappy genetics to my kids, who certainly never deserved this kind of burden in their life.  It’s hard enough to be a girl in this society, what with all the negative stereotypes and mixed messages.  The husband and I have done all the things we thought important with their learning, like moving them to a private, Christian school where they get focused attention and better help than they were getting at the other school they were attending.  Teaching them about self esteem and owning their differences so they aren’t ashamed.  But some days I just feel like I’m faking all of it.  That my own shame and feelings of failure of a parent make me a hypocrite for trying to be a cheerleader to them.  And some days I just break.  Today is one of those days.

Parents of kids with learning problems already have so much crap flung at them on a daily basis… “there weren’t these kinds of problems when I was a kid”, “kids in France don’t have ADHD because their diet is better, there’s state-funded maternity leave and they don’t use cell phones”, “you’re giving her DRUGS?  Oh, wow.  Why didn’t you alter her diet first?” , “maybe try the drugs, they aren’t so bad”, “oh, you work?  Don’t your kids deserve more of your time?” , “why aren’t you on her teachers 24-7, this isn’t her fault.”  When I see or hear this all I want to do is scream.  Parents of kids with learning needs already feel bad enough, what we really need is understanding, a feeling that we aren’t alone and will not be judged because we just want to do the right thing for our kids.  We don’t want to live in secret, afraid that if we ask for help, we will be judged by others who blame US for their kids’ differences.  All we want is understanding.

Since I’ve become more vocal about my own experiences, I have had several parents approach me asking for help or advice.  And I’m so glad that I’ve been able to help them.  I want to be an advocate not just for kids but for their parents, who live daily with this struggle and some days are good and some days are bad.  Today is a bad one for me.  But tomorrow will be good because I got this out and someone will read it and know that someone else is out there, too.  And that makes it worth it. 

Now that I got it out, I do feel better.  I’m counting my blessings and remembering why I’m where I am, why my family is where it’s at and our place in this big blue ball.   I’m where God wants me to be at this very moment.  Esther 4:14 tells us “for such a time as this” and that cannot be more true for me than it is now.  But that doesn’t mean that some days it is perfect—I guess I just had to be reminded today that I’m not in charge.  But that’s great because that means I can hand over the responsibility to someone else for now, dust myself off and breathe again.