A duty, nay, a privilege

I have a friend whose baby was born around the same time as D. Back then she didn’t have a car so when I drove into downtown to go to Whole Foods, she would go with me and stock up on the things our neighborhood stores didn’t carry. We got some healthy food and good company, our babies got a car ride and a ride in a cart.

Once on a dark winter afternoon, as we sat in traffic that inched us closer to home, she told me her son, a year older than Lei, had been diagnosed with ADHD.

I wish I remembered exactly what she said about it, but all I remember is the black sky above and the rain hitting the windshield as I sat there thinking, “That sounds just like Lei.”

Last week, after six years of asking psychologists if Lei might have an attention disorder and being told, “No, that’s normal for deaf kids,” and “No, that’s normal for gifted kids,” and “She’s spirited/sensory/creative,” Lei was diagnosed with ADHD.

The therapist she started seeing in February had asked a few weeks ago, after spending the session redirecting Lei’s attention again and again to the topic at hand, “Remind me…Does she have an ADHD diagnosis?” I said no, but that I had concerns about her ability to focus and control her impulses. The therapist, a psychologist who has worked with many deaf children and CI users over her years, said, “If she’s this distracted in a perfectly calm environment, I wonder what it’s like for her in school.”

So we agreed to go through her history and inventory her level of functioning at an upcoming session. She asked us questions about everything from homework to if Lei could sit at the table for a whole meal, and at the end showed us how Lei met the criteria for ADHD, inattentive type.

At the time I felt calm, even a little relieved, that someone outside my family was seeing what I see every day. Over the days since, I’ve begun reading the books Lei’s therapist recommended, and feeling angry at how long it’s taken us to get this diagnosis.

Why did so many “experts” whom I trusted brush off my concerns? I guess they wanted me to feel better, or thought that they knew what it was like to live with a child who, after years of working on routines, couldn’t remember to brush her teeth at night or make her bed in the morning. Or who could listen to instructions three times and forget them instantly.

A child so eager to please, but who couldn’t stay in her seat or wait her turn to speak, but kept interrupting her teachers and parents long after her peers learned, for the most part, to observe and wait. A child who, at age eight, nine, 10, 11, 12, yearned for friendship but still grabbed things from other children instead of asking for them.

The experts saw a bright, empathetic and highly verbal child whose shining eyes and passion for Greek mythology stole their hearts, even if she was a bit scattered. Which is fine, except it didn’t help us with the many challenges we were facing.

But I have kept telling myself that the time must be right for us to know now. It hurts, though, to think about all the ways Lei has suffered with this, and how much stress it has caused her brother, dad and I. And all the judgmental voices I’ve ever heard about ADHD swirl in my head: “It’s just a way for drug companies to make money by drugging little kids.” “He’s just an active boy, it’s not a disease!” “There’s no such thing as an attention deficit, except the attention that’s lacking from the parents.”

And with these voices come my own self-blame. If only I had done … something better.

But I swear I have done more than I ever thought I could do for anyone. I have not been perfect at all, but every single day I’ve gotten up out of bed again and re-engaged with parenting my daughter, in spite of how hard it’s been from day one. I haven’t quit, and if you look at my girl, even with her developmental delays she is still one totally kick-ass kid. She’s a talented artist, she cares about animals and is passionate about social justice. She feels great about being a young woman and proudly proclaims her feminism. My girl is pretty awesome.

So I have decided to re-frame the ADHD issue. It’s not a failure of parenting – if you disagree, go study the science for yourself – and honestly my parenting is pretty fantastic. What this ADHD diagnosis presents is a new chapter in our family story, a new adventure. There is a villain in this story, the disorder itself. And there are lesser evils as well, people who want to undermine my faith in myself and my child’s ability to build a bright future with appropriate help. We have allies in the special needs community, in Lei’s therapist and others who want to help by supporting our family’s goals. And there are battles to fight along the way, with ourselves and with others.

Our tools will include a trial of medication, and if you don’t think that’s appropriate, I invite you to keep your enlightened opinion to yourself. It has no place in my life.

As I was framing the situation this way to myself, I remembered a song I’ve always loved, and that seems so perfect for the life of a special needs parent. We face the impossible every single day. We do it without enough help, some days without hope, but we get up and do it again and again, because our dedication to our kids is tougher than we ever thought we could be. And even though the challenges they face will never truly go away, we will continue to fight for and alongside our kids for as long as it takes.

Here is the legendary Peter O’Toole as Don Quixote. “It is the mission of every true knight, the duty, nay the privilege … To dream the impossible dream …”

And even on his deathbed he says what might as well be the rallying cry of all of us who are struggling every day with our beautiful, precious, challenging special needs kids:

“Each time he falls, he will rise again, and woe to the wicked!”

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5 thoughts on “A duty, nay, a privilege

  1. I love you!!!! We too had to fight to get our twice exceptional son an ADHD diagnosis. The psychologist jumped to nothing wrong or maybe autism. Luckily the journey only took us a year and some arguing with the “experts.” And, what do you know, his diagnosis includes severe ADHD. Now is is thriving in a very supportive classroom with a morning dose of meds. It’s what works for him and us.

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  2. Also that song was a favorite among my group of twice exceptional friends when we were in high school. Of course none of us knew we were twice exceptional until many years later. It is so apt.

    Being able to talk about ADHD openly and matterafactly undemonizes it. We (myself included) have interesting brain wiring and need extra coping skills (and sometimes meds) to be successful in our society. It’s a shame we have to fight to get diagnosed then fight again to be treated.

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  3. My son was born with a cleft lip and palate. Another diagnosis that causes the experts to shove a kid into a treatment box.
    At almost a year, I went to his pediatrician and asked for a swallow study, I felt he was aspirating food (common for kids like him). The pediatrician told me it was allergies. Two days later I went back, armed with a note from out Speech Pathologist and informed them I wasn’t leaving until I got the referral. The swallow study results showed he was aspirating more than I thought.
    At a year he got a double ear infection that lasted 2 YEARS. He had tubes, he was continuously on antibiotics. We saw 3 ENTs. He was subjected to one round of antibiotic shots. I found a new pediatrician and another new ENT. The new ENT stopped the antibiotics and cured the infections and mastoiditis. All of the previous experts told me it was normal for a kid with a cleft to have lost of EIs and left it at that.
    He now wears hearing aids (all current experts think it could be related to untreated infections). He is also a gifted child.
    When I enrolled him in a choice school, the principal called me and tried to talk me out of sending him there because they couldn’t accommodate him. She gave me a list of reasons, no of which applied to him. He has two wonderful teachers who don’t need an FM system for him. He does well. Last fall they asked to test him for the gifted program and he blew them away.
    I have learned the experts are really the moms and dads in the trenches. The ones who have to hold screaming children while administering ear drops. They ones who get stressed out at the idea of being out of milk because a trip to the store isn’t as easy as it sounds. I tell lots of new parents just starting the journey I’ve travelled- ask. Ask over and over again. Ask other people, ask other doctors. Ask people you might not expect would know. Your child can’t ask, so you have to.

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    1. I realize that there is a definite up-side to my girl’s neurodiversity, and that many people wear the label with pride. I’m not really there *right now*, but I hear you. It’s better knowing and working with it than going along feeling like you’re just broken. That’s not weird at all.

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