Mary and Dad working at the SMILES Annual Picnic |
In March of 2009 Mary came home with me. Corrections had dropped her case, which meant the County no longer had any say in her life, and her team had dissolved as well. We were out of their hands, and they were out of our lives. It was now just Mary, me, her mom, and for a while yet, Mary's social worker. And even though we had no reason to have to work with the County any longer, Mary's mother still wanted to work with the social worker, and so I would occasionally meet with the two of them to talk about Mary.
None of us, however, thought Mary was ready to come home yet, including Mary herself. Neither her mom, nor I, thought we would be able to take care of her, especially since no group home in the state had been able to. But Mary wanted to be close to her home, and I wanted her to be close to her home. And if she was going to placed in a foster home, it had to be one that was close to her home. But even more than this, Mary didn't want the County running her life anymore. She wanted her parents to — or rather, her dad.
For all practical purposes, I had been Mary's social worker during the two years she was in out-of-home placement. I was the one who got information from the group homes and brought it to the team, found things for her that were missing, straightened things out for her that were messed up, and alerted people when she was being abused. Mary knew I was the only person that was helping her, and she knew her best interests were only being served by me — not even her mother.
Her mother didn't want Mary home at all. She didn't even want her close to home. And she continuously sided with Mary's workers to accomplish this — wanting her placed at North Homes rather than the much-closer Avanti, wanting her placed in the Fergus Falls foster home rather than in a foster home near Mankato, and arguing against Mary's lawyer and me (and even Mary herself) in order to keep her in these places. And like Mary's workers, she opposed getting Mary any treatment, getting her a neuropsych exam, letting her go to Oberstar's clinic, or allowing outside agencies to look inside her case. I don't know if she had anything to do with the threats I received from the County or not, but like the rest of the team, she didn't speak up about them. It seemed as though she didn't want anything for Mary if it was something I wanted for Mary. And as part of their side of the team for those two years, she tried everything she could to keep me from having any part in Mary's life.
Other than Mary's lawyer, I was the only one who paid any attention to the things that were happening to her — the nightmares and the screaming in the middle of the night, the missing meds, the constant lying and the constant moving, and the abuse. And despite my degree of commitment and my level of involvement in my daughter's life (or possibly because of it), they wanted me out of her life more than anything.
It's still difficult to believe I had to fight against my local Social Services agency just to get them to look at Mary's claims of abuse. But I did. And since they wouldn't believe me or listen to her, I had to find someone who would and who would look into the things that were happening to her and try to stop them. But maybe the worst thing of all was that Mary knew this and it bothered and confused her, as well as me. Sound harsh? It's true — it's all in the mountains of emails and meeting notes our team generated over that two-year period. And for me to continue to keep these secrets, not only continues to hurt my family, but the hundreds of other families who won't or can't speak up.
But even considering how fearful and weary both Mary and I were of ever working with Social Services again, I decided I would still meet with her social worker and her mother, assuming those things were in the past.
Mary and I both felt she wasn't ready to come home yet. But we believed she would be ready soon, and until then I wanted her to be close to her home. We decided that by being in a foster home that was close to her home, she would be able to transition back to her home much easier. This was the sensible thing to do, and Mary and I wanted to do things the right way. We desperately wanted things to work. And so I continued to look for foster homes in our area exactly like the Department of Human Services mission statement on out-of-home placements stated we should.
But she was home now and was settling in and this was a big adjustment for all of us. For the first night or two she kept pinching herself, not quite sure if she was actually home and if any of this was real. And occasionally during the first week or two she was home, she would ask my permission to leave her room forgetting that she was in her own home and not in a group home anymore. We laughed about this.
At that time I had a house big enough for Mary to have a room of her own, and right away she began putting the few things she had brought home with her into her new room: a sack of clothes, a few personal items, and a suitcase or two that were in the trunk of the transport vehicle that brought to the court house on her last day of court. She unpacked her things and put them into her new room, and I got her clothes that had been left behind out of the closets and boxes where they had been stored for those two years. And even though most of these clothes didn't fit her anymore, she still wanted to arrange them all into her dresser drawers and hang them in her closet. And she was happy. That evening I made Spanglish sandwiches for the girls, and the three of us sat together and had the greatest time eating, laughing, and talking just like old times.
Back in the Community
The next day, I enrolled Mary in school. I didn't know how long she would be in Mankato, but I didn't want her to not be in school. And, I must admit, I was also trying to make sure she stayed in the area. I knew that by connecting her to resources in her community, there would be less of a chance someone would try to yank her away. The County wasn't officially working with us anymore, but I still didn't trust them. And I knew that if Mary was enrolled in school and working with doctors, therapists, and other specialists, it would harder for someone to take her away. After what we had been through, I wasn't taking any chances and only doing what any good parent would do to keep his child safe in the community.
Mary didn't want to attend the large high school in town – she was intimidated by so many students — and preferred, instead, the smaller alternative school in the Lincoln Community Center (formerly the Lincoln School). I tried to provide her teachers with as much information as I could about her educational status, but her education in the group homes had been so haphazard, and her records were in such disarray, that this was nearly impossible. She didn't know for certain what grade she was in, nor did the group homes, nor did her workers – no one knew. Each placement had done something completely different with her education, and with so many placements, it was now a mess. I believed she was in the tenth grade at that time.
I wanted to make sure Mary did well at this school, and so part of that meant letting her teachers know about her learning disorder. Very few people knew anything about nonverbal learning disorder (NLD), but I had a number of books on the subject and I was giving them to people. I gave a copy to her special education teacher, her mother, and her social worker. Her social worker actually reprimanded me for doing this, and I don't know if anyone except her teacher actually read them. Mary read them, though, and she and I discussed NLD quite a bit, and it was encouraging for her to find out that her behavior hadn't been caused by some flaw in her personality, or because she was a bad girl – like she had been told – but was instead, largely the result of something she had been born with, something she couldn't help. Her self-esteem improved from gaining this knowledge about herself – things she didn't know until she was home reading about them with me.
Throughout Mary's life she had been diagnosed with a number of different childhood behavioral disorders including ODD, ADD, ADHD, and conduct disorder, to name a few. And none ever seemed to fit her. When she was about eight years old, I took her to a pediatrician who diagnosed her with ADHD within ten minutes. This was, of course, after he watched her climb up on his exam table to examine the ceiling tiles in his office. But of all the labels Mary had been given, nonverbal learning disorder seemed to fit her best. And despite how erroneous much of her neuropsych results had been, this diagnosis seemed accurate, even though it was ignored by her workers. The following is a brief description of NLD from a web site.
"NLD is a neurological disorder in which brain functions such as visual-spatial, intuitive, organizational, evaluative, and holistic processing are disrupted. Children with this disorder have above average intellectual functioning and language skills. They insist on routine, resist environmental change, and they struggle to reciprocate in conversation and are often challenged in social situations."
Digital vs. Analog Clocks
NLD seemed to fit Mary well and explained a lot of her behavior from an early age on. On one website a parent mentioned how difficult it was for people with this disorder to tell time using analog clocks. This struck home with me, recalling all the times Mary had come to me wanting to know what time it was, even when there was a clock on the wall – an analog clock. After a while I would tell her to look at the clock and wondered why she hadn't done this in the first place. It was a long time before she was able to admit she couldn't read analog clocks and could only tell time using digital clocks. I wondered then how she had gotten by all those years without any of us knowing. I tried to teach her how to tell time using an analog clock, but as with many things, it was difficult for her, and she would get frustrated and we wouldn't get very far. Now I understand why. And now after learning about NLD, she does too. And this difficultly she had learning illustrates what school was like for Mary most of her life. She never realized she saw things differently from other kids, and often when she tried to explain these difficulties to her teachers, they thought she was trying to manipulate them or get out of work.
Mary was the top reader at the Washington Elementary school each year she attended – not just of her class, but of the whole school (she was home schooled until the third grade). She has always been a good reader and has always had above average language skills. But with subjects like math, she struggled and got frustrated easily with explanations geared toward students with normal brains. Her above average intelligence made it impossible for her to qualify for special education services (which she didn't want anyway), and baffled both her teachers and us parents as we tried to determine what was wrong with her. As with many NLD kids, we assumed her problems were "behavioral" – a very vague and dreadful label for a child to be pegged with early on in life.
Mary could always write very well, and I have always loved her poetry. I honestly do and am not just saying that like we parents often do whether we like our children's creations or not. She has a command of language beyond that of most kids her age, and is able to combine words in creative ways other kids her age can't – something, I suppose, you might expect from a child who has had to rely on one rather limited use of language for all her communication needs. Some NLD experts emphasize focusing on these kids' ability to see the world in unique ways rather than on their inability to see the world the way everyone else does. I saw this in her writing. Her poetry has a quality unique to her way of seeing her world, and I encouraged her to read her poems on stage one night at an open mike at one of the local coffee shops, and she did.
Subtleties and Nuances
With the visual-spatial right hemisphere of her brain damaged, she has trouble performing abstract thinking, or generalizing, and this has made social situations especially challenging for her. If she's able to detect social cues at all, it's difficult for her to generalize, or adapt, these from one context to another – to see similarities or patterns from one social setting to another. This has made it extremely difficult for her to acquire important communications skills. In one of her early assessments (North Homes 35-day assessment), a psychologist noted that she had trouble discerning the "nuances" of situations. That made a lot of sense to me at the time, even before I understood NLD, and it seemed an apt description of something I'd noticed about Mary, yet was unable to articulate. These nuances of our day-to-day lives, that most of us utilize and take for granted, for the most part, don't exist for her. This was later borne out in her NLD diagnosis, and explains why NLD kids have such difficulty communicating – they simply don't perceive the minute cues the rest of us do when we communicate, whether consciously or unconsciously – cues in our tone of voice, gestures, or facial expressions that convey much of our message. And since over 60% of our communication relies on these nuances, and the contexts in which they are used, Mary missed out on a large part of the world, and neither she, her teachers, nor her parents were aware of this. This also explains why she never understood sarcasm very well. She's picked this up, though, since both her mother and I appreciate humor far too much for her not to get at least a smattering of this growing up in our family.
This deficit in her perception also means she is susceptible to being manipulated – an especially dangerous vulnerability for a teenage girl to have – and it might explain why she ended up in situations in the group homes where she was abused. She wouldn't have known people were trying to manipulate and exploit her. And the professionals who worked with her and knew this about her, and yet continued to exploit this vulnerability she was born with, are guilty of abuse, in my opinion. And this is the ultimate irony of her neuropsych exam — the fact that her workers continually tried to prevent her from being tested (against the advice of specialists and staff at the group homes she was in), and when finally forced to, decided to use her test results to justify their own mistreatment of her and to vilification of me. This is also, in my opinion, nothing less than abuse.
Plots and Themes
Mary did well with math at an early age when much of it was simple linear addition and subtraction, but she struggled in the advanced grades when math problems became more abstract and required more conceptual thinking. She especially had a hard time with geometry, which if I remember correctly, is nothing but abstraction – spatial-conceptual theories understood primarily with right-brain thinking.
And even though Mary has above average verbal skills, she had trouble in language classes in advanced grades when reading turned into literature, and mastery went from understanding simple plot lines to determining themes and underlying meanings. I remember one day she and I were talking about this, and she told me she never understood the difference between the plot of a story and the theme of a story. For the first time I was able to understand her thinking in a way I hadn't before – possibly because she was able to understand it too.
Understanding the differences between the way she thought and the way others thought, helped me connect with Mary and helped Mary connect with others. I was able to tailor worksheets for her in a way she could easily understand. For example, I made a check-off list for her which contained few items and was visually easy to grasp — if she got up on time, took her meds, logged into school, and did her homework each day, she would get a reward at the end of the week – usually something she decided on at the beginning of the week.
I got her connected to a local vocational rehabilitation counselor and an occupational therapist – professionals who worked with people with nonverbal learning disorder. I also took her to her vision therapy appointments in the Twin Cities, but these would soon stop due to time involved and expense.
Most importantly, Mary was home, and she and I were glad for this. We knew we had a long way to go and that it wouldn't be easy, or might not work at all. But I had gotten her out of that crazy group home experience, brought her back home to her family, and we were determined to make it work one way or another, despite those who still opposed us.
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