> No More Secrets And Lies: Getting the Neuropsych Exam

Friday, October 19, 2012

Getting the Neuropsych Exam

On December 29th Mary had her neuropsychological evaluation. Her social worker picked her up in Grand Rapids and drove her to Sauk Rapids to get evaluated by Dr. Tim Tinius. I had been reading about neuropsychological evaluations and had talked to a number of psychologists from the Mankato area about how these were conducted. Most of them told me these tests can take anywhere from three to four hours, are comprised of a number of individual tests, and are often spread out over a few days. Usually the parents meet separately with the psychologist to provide a history of their child in order to rule out things like birth defects and the like. None of the psychologists I talked with said they could perform a neuropsych examination in one hour, and certainly none of them mentioned anything about parental assessments being any part of a child's neuropsychological evaluation. Yet, Mary's exam lasted about an hour, the parents were never consulted (at least not me), and most of the test results were devoted to a parental assessment.

After Mary had completed her test, we were told we would learn what the results of the test were when we met with the psychologist the following month. On January 22nd, 2009 most of the team drove to Sauk Rapids, Minnesota to meet with the psychologist to discuss Mary's test. Mary's lawyer wasn't able to make it to the meeting,  but she attended via speakerphone.

I came early, and while I was waiting in the lobby for the rest of the team to arrive, I noticed brochures advertising that this psychologist could be hired to administer neuropsychological evaluations to clients who had been in accidents and wished to sue for damages. This made me wonder what kind of psychologist this guy was and what kind of business he was really in, but I didn't think too much about it at the time.

When the rest of the team arrived, we all moved to a little room for our meeting. I immediately discovered that some team members had received the results of Mary's test prior to our meeting. I hadn't, and neither had Mary's mother, her lawyer, or Mary herself. Everyone else knew the results of her evaluation prior to that day — everyone but those closest to Mary. I thought this was very peculiar and unusual, and maybe even somewhat unethical, and I couldn't think of any reason they might have had for keeping us parents in the dark. I wondered if this would have even been possible if a medical doctor had examined Mary. Would it have been okay for the parents to be the last ones to know their daughter had a serious illness? I don't think so. But again, I didn't think too much about it at the time. I was only concerned about getting Mary some help.

This meeting was as strange as any meeting up to this point, if not more so. After the corrections officer and social worker made sure Dr. Tim Tinius knew they had their masters degrees, "Tim," told an off-color joke about North Dakota cheerleaders grazing on grass at football games and how it made them overweight, or something appallingly offensive like this. My jaw dropped when I heard this coming out of this guy's mouth. Mary's workers appeared uncharacteristically professional compared to him.

Cause and Effect 

Once he got serious he began to discuss the results of Mary's test. He showed us some diagrams Mary had drawn — what I believe were block recognition or pattern matching tasks — and talked about how difficult these were for Mary to complete. He also talked about problems she had had with other portions of her exam. And from these tests, and others in the objective portion of the evaluation, he was able to determine Mary had Nonverbal Learning Disorder, or NLD — something none of us had heard of but which I would later learn about.

The other thing we learned from the objective portion of her evaluation was that Mary apparently needed vision therapy — something else none of us had heard of. He handed us a list of cities in Minnesota which had vision therapy clinics, and according to him, the best one was in Fergus Falls — a city about five hours from Mankato. Mankato was not on his list.

But what he spent the majority of the meeting talking about (and apparently what Mary's workers came to hear) were the results of his parental assessment. That's right — a parental assessment. Somehow this genius was able to evaluate my parenting skills by examining Mary's brain. And amazing as this sounds, it was not something that either I, Mary's lawyer, or the judge had requested. A parental assessment was not part of the court order. It was not what the judge had agreed to that day in court. The worst thing about it, however, was that neither Mary's lawyer nor I were told this was why Mary was kept locked up for three months, hundreds of miles from her family doing nothing but sitting in a room by herself. We weren't told that Mary needed to wait at North Homes so her workers could get an assessment of my parenting skills. There was never any discussion of this, and yet it was the only thing they wanted to talk about that day and the only thing Mary's workers would ever act on.

And according to this "parental assessment" of his, he determined that Mary's parents were the cause of all her problems, primarily because we were divorced — a condition there was no solution for. And with that notion articulated, he then came around to the main subject of his meeting (and apparently the main point of Mary's neuropsych) — that Mary's parents should never be allowed to be with her, ever again. It's all there.

I wasn't sure what was more shocking — that fact that he had manufactured a parental assessment from a pattern-recognition test given to my daughter, or that he thought I would believe it had any validity. What he and Mary's workers completely missed, however, and what turned out to be the strangest irony of all of this, was that the part of the test that was actually valid — the part he did correctly because the judge ordered him to, contradicted the part of the test that he fabricated — the part he did because Mary's social workers ordered him to. The objective portion of Mary's neuropsychological evaluation finally told us what had been going on with Mary all along — the thing that the Forest Ridge staff and Dr. Oberstar had suspected — that Mary had been suffering from an organic brain disorder, and that she had neurological damage to her brain (specifically to the right hemisphere of her brain). This not only told us what had been causing Mary's behavioral problems all her life, but it also told us what hadn't been causing her problems — specifically her parents. And in her workers' haste to skip over this portion of the test results so they could concentrate on what shouldn't have even been in the test results, they overlooked this. And this made their argument sound all the more ridiculous.

Inherent in Mary's nonverbal learning disorder diagnosis is the irrefutable admission that nature has much more to do with Mary's personality than nurture. And this fact serves to shine an even brighter light on the subjective portion of her test which, by the doctor's own admission, took as its burden of proof hearsay information he had gathered from people who themselves had gathered it from yet another source, which is nothing less than junk science in my opinion.

And since the NLD diagnosis uses as its burden of proof empirically gathered objective evidence, it seemed reasonable that we could finally put to rest suggestions from Mary's workers that her parents were the cause of her behavior. The first part of his test contradicts the last part of his test. It's as simple as that.

And I also I think it's just as reasonable to conclude, from both this diagnosis, and from observing Mary's behavior as it became worse over the two-year period she was with the county (where her behavior was documented on a daily basis), that her parents probably had little, if anything, to do with her behavior getting worse. In addition to this, when you consider how detrimental frequent moving can be to a child with nonverbal learning disorder, it doesn't seem unreasonable to conclude that the county might have played some part in causing Mary's behavior to become worse.

Mary's NLD diagnosis made a lot of sense to me since both Mary's mother and I had been dealing with her extreme behavioral problems since her birth. And when it became obvious to everyone that Mary's problems never left her, even when she left her parents, it seemed sensible to begin looking within her for the cause of her problems rather than outside of her. This was probably what both the Forest Ridge staff and Dr. Oberstar suspected and why they thought Mary should get further testing.

Mary's behavior actually became worse the longer she was away from her family. And you would think the opposite would have been the case if her parents were the cause of her problems. You would also expect her behavior to have become worse during the year and a half when she would live solely with me, but it didn't — it improved. She got better. But then I'm getting ahead of myself.

The NLD diagnosis fit Mary better than any other diagnosis she had been given, and she had been given many— ODD, ADD, ADHD, conduct disorder, bipolar, etc. And even though part of the neuropsych results were a joke, the other part contained, in my opinion, one of the best diagnoses Mary had ever received. Nonverbal learning disorder fits Mary very well, and she and I have learned a lot about her behavior since then by reading about it.

This parental assessment of his was easily seen as an attempt to denigrate me. This psychologist had never met me — never even spoken to me — prior to this meeting. The first time we met was when he handed me his evaluation of me. He had only heard about me (and quite a bit, as a matter of fact) from Mary's social workers. It's all in the test results. A large portion of Mary's test results consists of conversations he had had with these people.

The Solution

Dr. Tinius wasn't able to tell us very much about how to work with Mary's learning disability problem, but he was surprisingly well prepared (or prepped) to talk about how to work with Mary's parental problem, and he had a very specific prescription for how this could be remedied right down to the details. This included a foster home where she would be the only child, run by an elderly couple, and located as far away from her parents as possible. He made it clear that no other kind of placement was acceptable.

And unfortunately for us, this kind of foster home was extremely difficult to find. But, fortunately for us, he was able to find one just like it in Fergus Falls. Plus, Fergus Falls had the best vision therapy clinic too. I failed to be as appreciative of this good fortune as he wanted me to be.

The type of placement he was recommending for Mary would have been, in my opinion, the worst possible placement anyone could have picked for her. It was everything she didn't need: she would have been alone (not with other kids), in an unlocked house (not a secure facility), and with an elderly couple (not a team of trained staff).

I would have liked it if Mary would have been ready for a placement like this, but no one knew if she was ready for this or not. Even during this same time period, when her mother and I asked about taking her out of the facility at North Homes for a short venture into the community, the North Homes staff and Mary's workers had to discuss this at length, and then gave us strict parameters — like staying with her at all times, limiting our activities, and having her back at a specific time. I don't know how she could have been ready for a foster home where she would be able to leave the house any time she wanted to.

It seemed obvious to me that there would have been a high probability she would have run away from this foster home in a matter of weeks, and no one would have been able to stop her. If they thought this "open" environment was suddenly okay for her, why was she held to such restrictive measures at North Homes during the same time period? Why weren't they beginning to transition her to this new setting to see if she was ready for it?

In addition, there were other reasons this would not have been a good placement for Mary. Considering her vulnerability to abuse, and the number of times she had already been abused in group homes, I couldn't be certain anyone would be looking out for her so far away from home. I didn't trust her workers any longer to keep her safe. They hadn't shown they could do this in her previous placements. They had lost her medications (which I had to find), had been oblivious to her being abused (which I had to discover and investigate), and Mary didn't feel she could tell them about things that were happening to her (like she was able to do with me). Plus, it looked like they were using her to satisfy their own needs — one of those needs being to do whatever they could to separate her from me. There was a good chance Mary would have run away from this foster home in a matter of weeks, and since it was hundreds of miles from her home, who knows where she would have ended up. Who knows where she would be today if I would have allowed this to happen. Was this what they wanted?

Out of all of Mary's placements so far (not counting detention centers or mistakes like Woodland Hills), she spent the shortest amount in a foster home, before she ran away. Mary had run away from locked facilities, where she had kids to hang out with, and where there were young staff members — many of them — who weren't able to stop her. How long would she have lasted in a home where she could come and go as she pleased, where there were no other kids to play with, and which would have been watched over by an elderly couple? Where would she have gone if she did run away from this place? I don't like to think about it. If the county would have gotten their way with this placement, we might not have Mary in our lives today. Was this what they wanted?

This was an unthinkable type of placement for Mary and I was going to do everything I could to prevent it. But this meant facing an even steeper uphill battle against both Corrections and Social Services, plus an ever-growing team.

* * *

Dr. Tinius ended the meeting by telling us not to say anything to Mary about what had been discussed at our meeting until her social workers were able to tell her. I was glad he warned us about this, because then I knew I had to tell Mary before her social workers did.

And I did. Mary called me after the meeting wanting to know about the test results—what they said about her and what they said about where she would go next. She wanted to know what direction her life would be taking now, and I didn't blame her. I told her everything. Why wouldn't I? She had been sitting in a shelter for over three months doing nothing but waiting for the results of this test. And whenever she asked us what was next for her, all we could tell her was that she would have to keep waiting until we had the results of the test before we could answer her question. The neuropsych results were the Holy Grail, and her life was on hold until we had these in our hands. This is what she had been waiting for, for over a third of a year. To keep any more information about her, from her, was nothing less than criminal in my book. And the information from her test was so tainted and screwed-up that it was necessary for me to tell her before her social workers did. I didn't want them telling her anything about her case anymore. I felt they were abusing her and that I needed take her away from them, and maybe even get a psychologist to include the truth about them in a neuropsych report.

I told Mary exactly what went on in that meeting, and of course, I got in trouble for this and they tried to use it against me. But I didn't care. There was no way these people were going to tell me anything, anymore about what I should be doing with my daughter. They weren't looking out for her; they were looking out for themselves, and they were using her to hurt me — hurting Mary to hurt me.

By now her workers were already as upset with me as I thought they could get. They were upset that I found out Mary had been abused at Elmore and that she had been exhibiting sexual abuse symptoms and screaming at night at Forest Ridge. They were mad because I knew they had possibly planned to drop her medications at North Homes and that they had lied about getting her into Woodland Hills, Little Sands, Dr. Oberstar's clinic, and even this guy's clinic. I didn't think they could get any angrier at me.

Besides the NLD diagnosis, the only other positive thing to come out of our meeting was that they admitted things weren't going well for Mary. Of course, they waited until they could make it look like someone else was responsible for those problems, before they would admit this.


TSElliott said...

Why do you take things so perfectly. You know that parents often have a hard time dealing with their own children's developmental disabilities. The proof is that the two of you couldn't even figure out how to keep her safely locked inside your own house at night and sent her to the state to be locked in. You can see that right? I just can't believe with your background that she was never given a full psych and nuero eval while in elementary school? If you knew she was always different, why did you not get her help when it could of worked?

John Brosnan said...

We did get her help when she was younger, and I think it helped. Her mom and I did a lot for her and Mary tried her best too. It's always been a struggle.

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