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Heartache By the Number: My life with Dyscalculia

staring-25819-mdys·cal·cu·li·a  (Diss- Kal-cue-lee-ah) n. Impairment of the ability to solve mathematical problems, usually resulting from brain dysfunction.

It can be very hard for me to speak openly about the struggles I have endured because of my learning disability, but in the interest of giving others like me hope, I have decided to really speak out. Ask the average person on the street what dyslexia is and most of them will have at least a general idea and acknowledge it as being a legitimate disorder. Ask that same person about dyscalculia, and they will usually not have a clue what you are talking about. When you try to explain, often they will just wave it off and say “Well a lot of people are bad at math.” But, what I’ve come here to explain is: it is so much more than that.

Since I was very little, I was always ahead of my age in terms of reading and writing. I was the type of kid who was reading Stephen King novels by the time I was ten, and constantly trying to write down my own stories and poetry. But if you asked me to do my multiplication tables on command, I would literally burst into tears after a few minutes. It isn’t that I didn’t want to learn. I actually really enjoy learning new things, and I understand how important mathematics is to living in the real world.  I just plain couldn’t. It doesn’t just stop there either. To this day I can’t read an analog clock, I often have to have my younger brother or another family member help me count up my money, and to date, I have never passed a single math class. I’ve gotten through school by using class substitutions and working around requirements with my IEP plan, but that can only take me so far.  One way or another, the phantom that is math will find me. Bus schedules tend to make me dizzy just looking at them, and I have to have a special application on my phone that does the math for tips at restaurants because I am terrified of not doing the math correctly and offending my server.

It’s hard to live in such a number-based world when numbers cause anxiety at every turn. Out of habit I am always early for appointments because I am in constant fear of being late.  I have to be careful to count my change well when I go to the store so I don’t get ripped off, and people are constantly annoyed with me over how I have to count on my fingers, and how slow I can be at that. But before even those things became the big issue, my self esteem was what took the biggest blow.

I didn’t get an official diagnosis until I was in senior year of high school. I was told by teacher after teacher that I was lazy, I wasn’t paying attention, I wasn’t studying hard enough or sometimes even that I was just plain stupid. The other kids would laugh at me. They didn’t know that I would stay up all night before tests crying over my textbook, or that I would constantly get into fights with my parents because they would get so frustrated when they tried to help me with my homework. I used to hear, “You’re so smart, and this really isn’t that hard. I don’t understand how you can memorize all 151 Pokemon but you can’t tell me what 8×12 is?” And the truth is, neither did I. I had no answer for anyone, I legitimately believed that I was just dumb, and I was doomed to be dumb forever.

I can’t really explain what it’s like to someone that doesn’t have it, but imagine that every single time something having to do with numbers comes up in your life you freeze like a deer in headlights. Your brain goes blank, you sweat, and eventually you cry or scream, or maybe you walk away from the counter in shame even though you really needed to buy that cough medicine, or you really need to pass this exam. It is paralyzing, it is humiliating, and it feels so hopeless sometimes that it can be hard to get out of bed, knowing you have to face the world. Knowing people might laugh when you get an answer wrong in class, or scream at you when they ask you what time it is and you’re not sure because you don’t have a digital watch on you.

On a whim one night, I got so frustrated I googled “Why am I so bad at math” and there was my answer: Dyscalculia. A learning disorder! I took a short test on a website and brought it to the school, begging them to give me a test. They scoffed at first, telling me that clearly this was just some internet thing someone made up, and I was making excuses. My suspicions were right, and I can remember crying from relief when I realized for the first time in my life that I wasn’t some inferior person.  I was just struggling with something that is so little known and so misunderstood that even the special education department wasn’t aware. The irony is that it is just now being more widely discussed, and it is possibly a very common problem which goes unrecognized in so many people  for their whole lives like it had in mine. I sometimes wonder if I’d made this discovery earlier, how much it might have changed my life.

Of course I still struggle. This will be a lifelong issue and I will always be different because of it. However, it is my hope that with advocacy and research, I can do my part to ensure that maybe in the future no kid will have to go through so much pain. Nobody should have to feel inferior because they have a mind that works differently, and I end this blog with a message of hope for those who are aware and struggling, and a call to the world to do your research. We are not lazy, and we are not making excuses. Our disorder is legitimate and painful and we would like to be treated accordingly.

For people who are curious they may have this learning disability, or that their child or student may have it, this web site has a treasure trove of information on the subject.  That site may have saved my life when I was in the lowest point, and I can only hope it will change yours as well.

Brittany Bell is our guest blogger.  She is a 24 year old youth advocate at Youth MOVE Massachusetts who is studying to become a youth counselor.  She hopes to bring awareness and support to the learning disability and mental health communities by sharing her experiences. 

Choices

He was worriedMy son has been in St. Elizabeth’s Hospital for more than a month, but he can’t stay there forever. We are faced with a couple of choices, neither of them good. He can go to jail for the charges pending against him (two assaults, three stolen cars, destruction of property) or he can go to a locked IRTP, an intensive residential treatment program. For six months he wore an electronic ankle bracelet which was supposed to keep him out of trouble. But he repeatedly “forgot” to charge it, kept pushing its geographic limits, then finally managed to pull it off and fling it somewhere in the park, never to be found again. Now the District Attorney says that to keep society safe, he has to be locked away.

“He’s not a bad person,” I tell our attorney, as though he needs convincing. He stole three cars in a three week period. Why? Because he met a boy at a dance who lived an hour away and he needed to see him. He assaulted program staff when they set limits which he didn’t think were fair. Or he imagined they set those limits, it wasn’t clear.

And all of it, deep down, stems from trauma. When he likes someone, even if he’s met them only once, he becomes obsessed, he must impress, make sure they like him back. He won’t give them a chance to reject him (diagnosis: borderline traits.) And if a staff sets an unfair limit, it feels like a horrible breach, the end of their relationship. He loses it, attacks (bipolar I; impulse control disorder.) All so he doesn’t have to feel that initial pain again (PTSD.)

He was sixteen, the first time staff pressed charges for assault. Instead of adult court, there was an administrative hearing. We sat in comfortable chairs around a gleaming oak table: the lawyer I’d hired, my son, the staff member of his residential program whom he’d assaulted. The staff passed around photos of his injuries: a hugely swollen eye, purplish bruises, ghoulish; a bump on the back of his head where my son had “grazed him“ with the fire extinguisher. “He could have been killed!” the magistrate boomed at my fidgety son, who was looking alternately scared and bored. I averted my eyes from the staff, though his face was healed.

It feels more shameful to have a child who hurts others than to have one who is “just” mentally ill. My son’s probation officer promised to “get him,” claiming he wasn’t disturbed at all. I worry that people think I am trying to keep him from jail because I condone his behavior. I know the staff thought I over-indulged him. But there is a ninety-three percent recidivism rate for teenagers who are sent to prison. I feel as if I am trying to save his life.

So we wait. I need to fax psychological reports, past hospital discharges, proof that he has “major mental illness” to DMH central office. As I collect the best documents–meaning those which make him look the sickest–I feel like I am trying to gain admittance to the country club or get him into college (I wish!) It’s a scary race. Will he get into the IRTP before St. Elizabeth discharges him?

Postscript: I found out this morning that he got into Center Point, the IRTP. Now we begin a new chapter.

Our guest blogger, Randi Schalet, is a psychologist and an adoptive mother of her twenty-two year old daughter and eighteen year old son . She credits her ability to carry on with parenting her challenging son to the support of friends, family and, especially, other parents.