Dealing with the Diagnosis

Well, it’s finally happened. The thing I’ve been hoping for but praying wasn’t true, the thing I’ve been wanting and yet at the same time dreading: the diagnosis is in. On one hand, it is a huge relief. But at the same time, this new development is absolutely terrifying.

What, under the DSM IV, was termed “Asperger’s” is now, according to the DSM V, “Autism Spectrum Disorder”. And that’s what we’re dealing with. High functioning autism.

Finally, an answer that explains what we’ve been dealing with for the last 10.5 years. A way to communicate to doctors and teachers the issues we face on a daily basis. A name that they will hear and give credibility to. It took 5 years of therapy, doctor visits, tears, pain, worry, money, tests, sleepless nights, unending days, and heart-wrenching experiences to come up with this, not to mention all the tried medications, behavior modification programs, and the 3 long years prior to getting professional help when we tried to deal with this on our own.

My daughter – you may have met her. She’s extremely intelligent, creative, and witty. She has been described by her peers’ parents as “sweet”, “perfect”, “well-behaved”, and more. And yet for years I wondered how they could possibly be describing the child I was living with. How on earth can people say these wonderful things about my child, the one who terrifies us all, the one absolutely unwilling to accept praise or love, unable to tolerate even minute change (like moving a piece of furniture or hanging a new picture on the wall) without significant adjustment time, the one whose world crumbles should I change my mind about what to make for dinner or happen to catch her in a lie.

It started small. Things like not wanting to be held as an infant. Unable to sleep unless she was tightly swaddled and in her own crib. Her knowledge and vocabulary were astounding for someone so small. She was visually distressed by changes in her surroundings. Decorating for Christmas meant taking her to each room and showing her each change individually, explaining that it was good, that we were happy, that things were ok. Hyper sensitive to all things sensory (clothing textures, sounds, food textures and tastes – the list went on and on). All of this before she was 2.

And then she started getting older, and things became less small. The tantrums began to get out of hand. The older she got, the more obvious it became that it wasn’t something she was going to “grow out of”. I began to fear for the safety of my other children, terrified at the possibility of ever having another infant in the house because there was no guarantee I could keep another small person safe enough any more. And so we started taking her to therapists and doctors, looking for answers and help. Each one would begin by saying that yes, of course they could help, and then cut us loose after a few (or as many as 18) months, saying that there was nothing they could do. She didn’t want to be different, she didn’t open up, she wouldn’t do the work required. And so we bounced from one therapist to another, hoping to find the “right” person with the “right” solution.

Medication helped. Treating her for anxiety seemed to cut down on a not insignificant portion of her violence and erratic emotional responses. But after a certain point, increasing her anxiety medication simply wasn’t helping any more. Every time things would start to go well, we’d cut back on the therapy and immediately pay for that decision with a drastic increase in violence, anger, and outbursts. And finally, at around age 9.5, we realized that therapy is probably going to be a part of our week indefinitely. Stopped trying to wean her off it and started trying to figure out a way to make the finances work to keep taking her, week after week, month after month, year after year. Because when it comes right down to it, therapy seems to be the one thing that consistently helps.

The insurance was no help. 15 visits per year was the most they would ever cover (usually it was more like 12), and of course all that went toward our deductible. By the end of 15 visits we were barely into April. Still 8 months of the year to go, and they stopped applying the cost toward the deductible because we’d hit the limit. Quality therapy isn’t cheap, but we simply couldn’t afford not to do it. She was getting bigger, and it wouldn’t be long before she could overpower me. It was already a struggle to physically remove her when she started hurting her siblings. I knew it would be only a few more years and I would find myself in serious danger as well. I had hoped that Obamacare would help us out, but working for a small company precludes the insurance from covering the bulk of her care.

Shortly after her 10th birthday I got a job. Partly as a way to help with some of the financial strain, but mostly because I needed a break. I needed to be a person instead of a jailer, referee, and caregiver. I love my children – all three of them – but life had taken a huge toll on me and I was desperate to get out. Suicide had appealed to me in the past too much to continue life the way things were. I recognized that I was at my breaking point. Getting a job was one of the scariest and best things I’ve done for myself in the last 10 years. Suddenly I was no longer a slave to my child; no longer trapped in my home or my life.

But remember that change is incredibly difficult for this child. Despite the medication and therapy, within a few months I found myself in tears on the phone with the nurse at the psychiatrist’s office, begging her to tell me when enough was enough. When is it time to call 911? When is it time to drive her to the emergency room? When is the danger my other children, my husband and myself, and most especially this child are in enough to warrant emergency intervention? I just needed someone to tell me that her behavior was NOT normal. All her life, professionals, friends, and family had been telling me that she would grow out of it. That it was a phase. Speaking with this nurse I forgot about being afraid of what people would think of me and just asked her how much violence is normal. To my surprise, the answer was that at her age, this kind of violence is absolutely not normal in any way. Verbal fighting, an occasional half-hearted punch to an annoying sibling – these are “normal”. But violence that makes me afraid to leave her alone in the same room with another person? Absolutely not. The screaming fits in the car? A great way to cause an accident and hurt or kill us. I scheduled an emergency visit with the psychiatrist for the next week, and hung up with strict instructions to call 911 or drive her to the emergency room if things got bad.

Again, feeling like I had no way to help my child. Feeling like a failure, like my parenting and my personality had seriously messed up my child. It was a terrible way to feel. I began to regret the decision to work. I loved it, it was really really good for me, but it was causing this child so much distress and in turn the rest of us were paying for it. I counted down the days, holding my breath every time she came in the room, until the appointment with the psychiatrist early the next week.

The psychiatrist has been asking me for roughly the last 6-8 months, every time we go in for a checkup (which is generally every 4-6 weeks) if we’d like to try something new. “Behavior modifying” medication. And that was scary to hear. I’d been putting it off over and over, determined that with enough love and time and patience and effort we’d be able to get by without it. But this time I consented. “Please – I’m ready for anything. Anything to help my child and keep my other children safe.” And so it began.

It took months, but we got her to a point where the dosage seemed to be working pretty well. Still volatile, still violent, but instead of lasting for hours she was able to calm herself and apologize within minutes. That was a significant and blessed change. At the next checkup, we told the psychiatrist we were ready to stick with this dosage for a while. He wrote us a script, handed me a pamphlet and a few discount cards, and sent us on our way.

I went to the pharmacy a few days later to fill the prescription, and left with no medication. $700. That’s what they wanted to fill this prescription. 30 tiny pills. Enough to get us through 30 days. It wasn’t realistic to even hope to be able to cover this new addition to our financial situation. Even using all the money I earn from my new job in a month wouldn’t be anywhere near enough to cover all the therapy, medication, and doctor appointments for this child. It wasn’t going to happen. And I didn’t know what to do.

That same day, we received a notice in the mail that our property taxes hadn’t been paid for the previous year. Delinquent. Late fees. Nasty notices. The combination of the two (not to mention the news I’d received that morning that my middle child was born missing two teeth and would need braces, retainers, and implants to the tune of $3k per tooth) was too much for me, and I handed them both off to my husband. He made a few phone calls, worked his magic, and the insurance company agreed to speak with the doctor to see if this really was a necessity. The mortgage company apologized for their mistake of not paying the property taxes and promised to straighten it out. A few days passed and we were approved by the insurance for her medication. $250/month. Much more manageable. Still astounding, but the changes this medication has made in this child are absolutely worth that much to me. And then I remembered about the cards the doctor had given me. Turns out one of them was a payment assistance program. And suddenly we were down to $100/month. This is doable.

The next challenge is quickly presenting itself. School starts in two weeks, and her anxiety has risen dramatically. The outbursts are getting more frequent and more violent. I can only imagine what we would be up against without this medication. I am waiting as patiently as I can for the therapist to finish a report that we hope will prove medical necessity for an Individual Education Plan (IEP) at school. Waiting as patiently as I can for the school to hire someone to fill the special education teacher position that opened up over the summer, so that I can speak with this person to get something in place for my daughter. Because I know what the school year means. Anxiety, stress, adjustment, and an increase in the violence we deal with at home.

This report will hopefully help my child qualify for some services through the government as well. Someone to come and work with her in our home. Some help with the cost of all the appointments this child has over the course of a month. Some help with the cost of her medications. And a support network for us as parents.

And so I wait, and do my best to be patient with everyone who doesn’t live with this on a daily basis and therefore doesn’t understand why I so urgently need these things to happen. Try as best I can to help my child navigate her emotions and her life. Try to protect my other children and help them understand that we are trying to get their sister some help. And some days aren’t horrible.

I don’t know what the future holds for this child, for me, or for my family. What I do know is that for right now, we seem to be on the right track and there is some hope that this diagnosis will pave the way for more understanding, more empathy, more help for my child and more patience for my family when we jump and run unexpectedly from a social situation before anxiety translates to violence. Don’t take it personally; it’s not you, it’s us. I promise. But we’re working on it, often several times a week with professionals and always every single day here at home. And maybe someday we will actually get to sit through an entire event without jumping and running out 2/3 of the way through. I can hope, anyway.