Sunday, January 3, 2016

Somewhere on the Spectrum. Written by Dana

Somewhere on the Spectrum

I'm Dana, mom of 5. At this time, 4 have autism diagnoses.

We had our first daughter, K, in 1996, one of those “easy” babies and toddlers that everyone dreams of. She was quiet, eager to please. Walked right before her first birthday, spoke in sentences before she was two. She was reading and writing on her own before she started kindergarten at age 4.

In 1999, when she was two, her younger sister, M, was born. As an infant, M didn't like her feet being touched, but yet she wanted to be held all the time. She scared the heck out of me when she was a few weeks old, when I had a panic that she was being affected by carbon monoxide in our house and it was making her so drowsy that she didn't startle when a smoke detector went off. I sent my husband out in the middle of the night to buy new carbon monoxide detectors and turned out, it was just her not being startled by loud noises. This child was walking by 10 months old, and running by 11 months.

A few years later, I couldn't make it through a grocery store without M shrieking as she spun in circles, or pushed all the shelf price tags together into one jumbled mess. Keeping her in a shopping cart or stroller didn't work as she could escape any child safety belt, and with my husband deployed I had no choice but to drag her with me to the store.

She also had a noticeable speech delay. After a year of watching for her to hit a developmental surge and gain new speech, our pediatrician suggested that we have M's hearing and speech evaluated. A week later, they called and offered me a slot in a multi-focus child study clinic and I gladly accepted. Over the course of months, M was evaluated and assessed by speech pathologists, occupational therapists, developmental specialists, and more, both alone and in settings with peers. During this time, I attended parent meetings to fill out forms and discuss our day to day life. 

At the end of the clinic, she was given a list of diagnoses. Profound speech and language delay. Motor skill deficiencies. The most sneaky was PDD-NOS. I had to ask what this was, I knew no one that had a child with this, and back in 2002, the internet was not quite what it is today but I still found the scary word. Autism. She started preschool that fall in a special education setting, with a school district that, at that time, was going overboard to allow accommodations for kids. I'm really grateful that they did because it gave her such a great start.

In the middle of these months of evaluation, our third child, L, was born. It was different having a boy after two girls, and I was often told not to compare his milestones to those of the girls' because, “boys develop at a different rate”. He never really crawled, went straight to walking at 9 months old. By age two, I saw similar quirks and behavioral differences that made me suspicious so I asked our doctor for a referral for an evaluation. Again I was told that boys and girls develop at different rates so don't sweat it.

When L was three, in 2005, I said enough and went to our school district for an evaluation and turned out I was right, he was showing delays. His IEP was listed as developmental delay, with speech and language delays. He started preschool and I used the school eval to convince our doctor to put in the referral, not that it did much good. 

After 45 minutes with the specialist, I was told that I was spoiling him, because he was the only boy, and I needed to use better discipline methods so that poof, the behaviors would go away. Only, they became worse. He slept from 4 am to 8 am, no naps. He wasn't hyper but yet he was always on the move.

During this time, my older kids were seeing a therapist on a weekly basis. M, as behavior therapy. K, because she talked to imaginary friends at school, pretended to have a horse sitting under her desk. M started having issues with school, she was unable to focus and was falling behind. I made the decision for her to start medication and this meant seeing the psychiatrist in the office. As an aside, the psychiatrist and the therapist mentioned that they saw signs of Asperger's in K, but I didn't pick up on the clue. She was a straight A student, was in the gifted program, just had some idiosyncrasies. Don't we all have some? After all, she saw the same accredited professional that had called L a spoiled child, and I was assured that the only issue he suspected was dysgraphia. By now K was 9, M was 7, and L was 4. Year was 2006.

Along came C, in 2007. The same year, my husband retired from the Navy. We moved 160 miles away, meaning a new pediatrician and a new school district, one that wasn't as accommodating, and wasn't nearly as nice. One of my first encounters with the vice principal involved her telling me that L needed help to function in school, and she suggested I talk to our doctor.

L and I went to our first meeting with the new pediatrician and her first comment, as L hid under the exam table and refused to talk to her, was that she saw multiple issues at play and felt he needed to see a developmental professional, and soon. Within 6 weeks he had his first appointment with the Kluge Center at the University of Virginia. Hours of appointments and we walked away with the diagnosis I knew was there from the time he was two: Autism. L was now 6 years old, the year was 2008. I took this diagnosis to our school and was curtly told that I went “too far”, and that she only wanted me to have him get some medication. The battle with the school, the vice principal, the director of special education for our county, was long and in the end, I pulled my anxiety filled child from the school.

With two separate kids that have diagnoses, I thought I had a grasp of what I was dealing with. Between them they have enough similarities and differences that when I didn't see these in C, well he must be in the clear. Average. Neurotypical. Except, he wasn't. He had his own quirks, jumping off furniture, destroying toys rather than playing with them. A compulsion to touch vacuums and carry a USB cable around. This thing we jokingly refer to as “lack of self-preservation” as two year old C jumped out the front window of our house, constantly tried to jump down from the landing of our staircase, ate glass bulbs at the dentist office. The only child to need stitches, many times. From the time he started walking at 8 months old, everything was at a run, like a tornado at full speed. When he wasn't raging (in what I now recognize as his own unique meltdown), he was the funniest, quirkiest kid of the bunch.

By the time he was 3, the rages were unlike anything I had seen with the older kids. I started suspecting ADHD, really strong ADHD with an under current of anxiety. Our pediatrician submitted a referral to our insurance and they selected Children's Hospital in DC. I spent a year trying to get his name on the wait list for an appointment before saying heck with this and contacted UVA, where my older son was seen. We were able to grab a cancellation appointment shortly after and off we went expecting to come home with confirmation that it was indeed ADHD. We saw the same developmental specialist that L had been seeing for a few years, and she hit me with the news. Asperger's, with anxiety. I was not expecting this, but it explained the differences, the clues that I didn't pick up on (hello, vacuums!) C was now 5, and was 2013. 

Backing up a year, in 2012, baby N was added to the family. Because there was always a new baby before an older child had a diagnosis. (though no more here, baby N is called that for a reason, he is the baby of the family) He spends as much time at doctor's offices waiting rooms as he does at home, at least it feels that way.

Also in 2013, K, at age 17, seemed to be quirkier. There was some behaviors that had cropped up that concerned me. She started seeing a therapist, and after months of no progress, changed to a different therapist. I couldn't deny my suspicions any longer, and I asked the new therapist about the possibility of Asperger's. It was hard to say out loud, and even harder to have someone agree with me. My first attempt to make an appointment for her was met with surly attitude so I called UVA because I had no idea where else to turn. My call was transferred to the social worker and she took it upon herself to contact the specialist the boys see. The doctor offered an open appointment, two days later, for K, and I jumped at the chance. I knew going in what we would be told but it didn't change the finality of the words. Asperger's. ASD level 1. I have incredible mom guilt that for a decade, the signs were there but soft, not loud blaring outbursts that demanded our focus as it did with the boys and M. She was functioning really well, then not so well, and then after puberty, gradually got past the point that her coping skills could cope.

In March 2016, three year old N has an appointment for his own evaluation at UVA/ Kluge. I see some signs but hold out that hope that maybe he's “just” quirky, or copying behaviors of an older sibling. As N gets older though, there is less doubt. There are already strong delays that will require occupational therapy and he's on a wait list at the same office his older brothers attend. As with K and C, there is no speech delay. 

Each child has their spectrum similarities, mostly social skills, and so many differences that life is never boring. K is the artist, that pulls loose strings out of every single piece of clothing. M is the musician, one I could easily see raging and breaking a guitar on stage. L remembers every single thing he hears, while struggling to read. C makes us laugh on a daily basis, except when I'm replacing an iPad cover for the 5th time in just a few months but hey he potty trained just before his 8th birthday.
I'm fairly certain my husband is somewhere on the spectrum. I've bugged my therapist (because you know that with this household, mama needs a therapist as well lol) and my doctor repeatedly about whether I'm also on the spectrum. No, just kind of quirky in my own ways, but not quirky enough for spectrum quirky. We each have siblings that have a child with autism but none that have more than one child on the spectrum. It's our family quirk. 

Dana's Family of Five.
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