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Posts tagged ‘ADHD’

Unmasked

A couple of weekends ago, Mae watched BrainPop movies on ADHD and autism as we were driving home from somewhere.  The short video on ADHD, or ADD, described the characteristics as inattention, impulsivity, and hyperactivity.  The narrator said that people with ADD can’t concentrate sometimes no matter how hard they try and get bored easily.  He described children who call out answers to questions out of turn and have trouble sitting still and difficulty interacting with others.  In the autism video, the narrator explained that someone with autism has a strong interest in a particular topic, difficulty communicating and relating to others, and problems interacting with family and friends.

As we came into the house, Mae asked me if she has ADD.  I said no.  Then, she asked if she has autism.  I said no.  Then, I remembered that the video talked about autism spectrum disorders, of which Asperger’s is considered one.  Though the video didn’t specifically mention Asperger’s, I realized that I should change my answer.

I began, “Wait, do you remember meeting Dr. Mike and taking a lot of tests?”  I told her that the outcome of the testing was that Dr. Mike said she has Asperger’s Syndrome.   Mae asked what that means.  I started with, “Sometimes, you’re impulsive” and explained that sometimes she speaks and acts without thinking first of the consequences or impact on others.  She recognized that and said, “Oh, yeah.”

I started to talk about a second characteristic (I don’t remember which) but she went off on a tangent and started describing one of her classmates that she thinks has ADD.

I realized this was an opportunity to talk about one of our cousins who has autism.  We only see Jaden once or twice a year, and I’d wondered when Mae would notice and ask why Jaden seems different from other teenagers she knows.  I wanted to help Mae connect what she show on the video with real life and develop more sensitivity.  I told her that I think Jaden is the only autistic person in our family, and I talked about Jaden’s fascination with spoons, her monotone way of speaking, and need for routine.  Mae, ever focused on herself, asked if she’s the only person in our family who has Asperger’s.  I said yes, I believe so.  Mae clapped and said “Yay!” with a big ol’ smile.

I’ve heard Mae mention Asperger’s only twice since that conversation.  Once to tell Jay that she has it, in a tone that sounded as if it were a badge or at least something that made her unique and special.  On the other occasion, I was reminding her to focus on her homework and she said, “It’s because I have Asperger’s.”  She didn’t press that point because I’m a stickler about homework.  She’s gonna get it done no matter what and she knows it.

It’s interesting that she recognized herself in the BrainPop videos.  Of course, we and her teachers have spoken to her many times about blurting out in class and staying focused.  I try to keep her to a routine, especially on school nights and she’s gotten help from a therapist, which the videos also discussed.  And, my goodness, she knows that she has trouble making friends, or at least the friends she wants to have.

I told Mae this morning that she will be moved to a new homeroom class when she returns to school this week.  The school sent home a form letter on Friday announcing that, based on test results, 3rd grade homeroom class makeup is being adjusted to better match the needs of students.  Mae fell into a funky mood right away.  She’s worried that she will be separated from the one friend that she’s made, and I understand.  Frankly, I’m worried about that too.  Mae has consistently been complaining about the general rudeness of the kids and requesting to go back to her old school.  On top of that, she continues to complain specifically about Gigi.  Mae said this morning that she has been trying to steer clear of Gigi because she continues to be mean and bossy.  Gigi, according to Mae, insists on sitting with her at lunch and trying to play with her.  Yet, Gigi says that she doesn’t like anything about Mae.  Two weeks ago, at aftercare, she gave Mae and another student the middle finger and said, “F*ck you.”  The aftercare director says that she called Gigi’s parents and sent a note home.

I’m so hoping this homeroom change doesn’t place Mae in the same class as Gigi.  I’ve been communicating with the school guidance counselor as well as the aftercare director about the girls’ interactions.  Both women have been very understanding of my concerns.  This past week, they both thought that things were mellowing out between the two girls.  I’m not sure what to think because Mae paints a different picture.  I do know for sure that it would be a setback for Mae if she is separated from the classmate who has become her friend and placed in the same environment with Gigi for several hours a day vs. just seeing her at lunch, recess, and aftercare.  One of those things would be bad.  Both?  I don’t even want to think about it hard.

School is closed tomorrow because of Hurricane Sandy.  When it reopens, my top priority is to see the class rosters.

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The Golden Ticket

True to his word, Dr. Mike mailed Mae’s evaluation report within two weeks of our February 24 follow-up visit, and we received it late last week. I am so, so grateful for his diligence. I think it was a wise decision to use Children’s National for the evaluation vs. a doctor in private practice. I had read on Mamapedia and elsewhere stories of parents who had been waiting weeks or months to receive a written report from a neuropsychologist or developmental pediatrician so that they could request services for their children with diagnoses like ADHD and Autism Spectrum Disorders (ASDs). The written report seems to be a Golden Ticket for things like access to insurance coverage and flexible spending accounts, or simply getting educators to recognize that there is a clinical explanation for a child’s behavior and not “bad parenting.” I read about mothers calling and calling doctors’ offices, and the frustration of being promised over and over again that they would get a written report. So, I’m sending a virtual thank you to Dr. Mike and Children’s National for being accountable.

It took Hubby and me a few days to go through the seven, double-sided pages of findings about Mae’s strengths and weaknesses and recommendations for home and school interventions. We finished last night and then discussed next steps. It was easy to agree not to contact the public school system at this point to ask for Mae to be placed on an Individualized Education Program (IEP). That would be an intensive process with little or no return because we would be unable to show that Mae has any current educational problems, and the public school, as I learned at the first IEP attempt, focuses on what is needed to “access the curriculum.” We are satisfied with the academic and non-academic support Mae is receiving at her private school, and we are going to ride out the rest of this school year.

The most immediate areas of concern for Hubby and me boil down to social skills and flexibility. We will pick up with Ms. N’s social skills playgroup in May and maybe continue through the summer. Hopefully, Mae’s guidance counselor will be able to continue through the remainder of the school year to have lunch with Mae and two other elementary kids who need help with improving social interactions. I am waiting on the mail for a copy of Carol Gray’s social stories book, which I have seen recommended as a good way for parents to teach how to behave in various social situations. We have already Jed Baker’s book, Social Skills Training for Children and Adolescents with Asperger Syndrome and Social Communication Problems, currently on loan to the guidance counselor. So, I’m comfortable with where we are on that front.

The evaluation report recommends cognitive behavioral therapy to help Mae identify potential conflicts or unpredictable situations and develop strategies for how best to respond. Her meltdowns have become fewer and less intense, and to think that she could have even less almost makes me tingle. I think this will be awesome learning. Dr. Mike recommended a therapist that I plan to call this week, once I have my how-to-find-a-good-therapist questions and script together.

The report has many, many recommendations, big and small, long-term and short-term. I think we have bitten off enough for now, as I intend that we will not give our whole lives over to this thing. There is more to life than that. Charlie was the Golden Ticket holder who prevailed at the end of Willy Wonka because he stayed focused on the big picture.

Answers on the Way

So, Mae took the local school district’s Talented and Gifted (TAG) test on Saturday, February 5, as planned.  Kudos to the public school system for running a smooth process — they were organized and on time, for which I’m grateful — and to Mae for being patient and well-behaved throughout the morning.  She even described the two-hour test as “kinda fun.”  The test results will be mailed to us in about three weeks, and then we wait another three weeks to find out if Mae has been selected in the lottery process for the public TAG school near us.  I think it will be easy to the wait for the results because I’m not looking forward to having to decide whether we should actually transfer her to a new school.  Going from an environment that we know and trust into the unknown is a scary thought.  As I chatted with two other moms who were waiting for the test to finish, one said that she is trying not to think about the money she’ll save if her child transfers from private to public school.  Realistically, I think it is scientifically impossible to prevent thoughts of a new car (in her case) or new kitchen (in my case) from entering one’s head.  Ultimately, I am confident that Hubby and I will make a decision that will best serve our family over the long-term.

Yesterday, we took Mae for the neuropsychological evaluation that I scheduled back in October 2010.  The full-day evaluation assesses attention, concentration, memory, behavior, personality, social skills and intelligence.  It can be used to identify autism spectrum disorders, Asperger’s syndrome, ADHD, developmental and behavioral disorders, learning disabilities, etc.  Talking to various teachers and other professionals, and reading and researching in an effort to find explanations for Mae’s occasional defiance, meltdowns, and impaired social skills has at times seemed like opening a series of boxes only to find that the label on the box doesn’t quite describe what you’re holding.  We hope that this evaluation will give us a better understanding, if not a label, for what we have.

After the appropriate introductions and rapport-building small talk, the psychologist, Dr. Mike, explained to Mae that she would take some tests that would help him understand how her “brain works.”  Then, she was carted out for two and a half hours of testing while Hubby and I stayed with Dr. Mike for the parents’ interview.  Despite having filled out no less than four questionnaires prior to the appointment, the doctor managed to think of another 100 (or at least it felt that way) questions to ask.  After a lunch break, Dr. Mike spent the last hour and a half of the evaluation interviewing Mae.  Once again, she was a real trooper and came out of the interview energetic and smiling.

Dr. Mike was personable, focused, and thorough.  He explained at the beginning of the parents’ interview that he is a postdoctoral fellow working under the supervision of another psychologist.  During a break, Hubby and I talked about how our first impression had been that he looked too young to be a doctor.  I would not place him a day over 25.  However, his questions, explanations, and manner conveyed sound knowledge, professionalism and sincerity.

Dr. Mike had actually impressed me before we arrived for the evaluation.  He’d called me a week before to ask some background questions.  And, I thought, “Wow, someone who looks inside a patient’s chart BEFORE seeing the patient!”  So, I think we’re in a good hands.  Hubby and I will meet with Dr. Mike again on February 24 to go over the test results.  And so, we wait some more.  It is at least good to know that some answers are on the way.

Getting to Where We Need to Be

Indeed, it was an awesome day.  No meltdowns, tantrums, or fights.  We got to everywhere we needed to be today, and even managed to hang out in the library for a while.

For better or worse, basketball was canceled because it snowed a little this morning.  Jay handled the disappointment well, always the trooper.

Mae’s playgroup met as planned.  Woohoo!  We walked into the small office, where some parents were waiting for their kids to finish with the session already in progress. Both white mothers looked away and didn’t response to my sunny hello. No surprise. I received similar avoidance in the occupational therapist’s waiting room this past summer where Mae went for help with sensory processing issues (of the tactile seeking variety, e.g, touching family, friends, and teachers’ arms and hair to the point of being annoying or invasive). The irony is that these are parents who want to help their kids improve their social skills, yet they didn’t extend the common courtesy of returning a greeting or acknowledging someone’s presence with simple eye contact. Having a difficult to manage kid is already isolating enough; you would think that there would be an instant affinity across race or ethnicity. Anyway, after a short, uncomfortable silence, the dads in the room attempted to make small talk. Even better, after that group of parents collected their kids and left, the next group was much friendlier.

Between building Lego binoculars and towers and coloring with Jay, I had an enlightening conversation with two mothers of boys with ADD. It’s always a relief to know that you aren’t the only one, and even more of a relief when someone’s got it worse than you. One mother was pretty candid — she has a glass of wine every night and she sometimes wishes that her 10-year old had Downs’ Syndrome, or some other apparent disability, because then others would be more understanding and tolerant. Wow. I won’t judge her because I don’t know what she goes through on a day-to-day basis. I did offer that I accept and claim Mae for all that she is because she is hilarious and fun and brilliant, even if I don’t understand completely how she’s wired. I don’t like some of the things that Mae does and says, but I do think she’s the way she’s supposed to be. The mom’s face and tone lightened and she said that’s a good way to look at it.

The other mom talked about the lack of support from her son’s school.  She used to take him to a playgroup 1.5 hours away from their home, which required that she pick him up from school an hour before dismissal.  The guidance counselor didn’t want to excuse him, and suggested parenting classes instead.  Ouch.  Fortunately, Mae and Jay are in a small, private school and the principal, guidance counselor, and teachers have been great thus far.

After the session ended, I spoke briefly with the lead teacher. She said gently of Mae, “She needs to be here.” Uh, yeah. We don’t have a label or diagnosis, and our primary reason for participating is that Mae has had innumerable negative social interactions with playmates over the past years, especially through kindergarten into first grade.  A peer’s declination to play with her or to play the game she wants to play can lead to a crying bout 15, 20, 30 minutes long and statements like, “Nobody wants me.  Everybody hates me.  No one wants me any more.  No one cares for me.”  A disagreement about whether cars are better than make-up can end with a shoving match.  And, don’t dare cut in front of her in line or refuse to share a toy with her.  She’ll lay hands on a kid twice her size and not even blink before going in.  We saw a pediatric psychologist, who suggested Asperger’s, and the occupational therapist also advised us to look into Asperger’s.  Her school principal and guidance counselor said maybe ADHD.  We hope to learn more after a full neurodevelopmental evaluation scheduled for early February 2011.

Meanwhile, Hubby and I are trying to do what we can to help her be successful in building and maintaining relationships.  After weeks of searching for a social skills group within a reasonable driving distance, I stumbled upon this one in an ad in a local, free parenting magazine that I picked up at the gym.  The group leader is actually a speech-language pathologist.  I wouldn’t have thought to look to a speech-language pathologist for social skills training, but now it makes sense because children with communication challenges would be expected to have trouble making and keeping friends.  My lesson:  think more creatively and broadly when looking for resources.

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