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Posts tagged ‘autism spectrum disorders’

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.

National Minority Mental Health Awareness Month

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This post is in support of National Minority Mental Health Month and No Shame Day, a day of awareness promoted by The Siwe Project, a non-profit that promotes mental health awareness and education among people of African descent throughout the world.

I debated with myself on whether to participate. I am woefully underqualified to offer any creditable information or guidance in this area, and my support is generic at best. Though my daughter, Mae, was diagnosed last year with Asperger’s syndrome, I have still many unanswered questions and gray areas. My focus has been on better understanding, accepting, and working to her strengths and weaknesses, and less no on the label itself and larger questions about mental health.

Is Asperger’s a mental illness?

Yes . . . no . . . maybe.

There is considerable debate about the exact classification of Asperger’s, a disorder on the autism spectrum that is evidenced by high intelligence, poor social skills, impulsiveness, and inflexibility, among other traits. The characteristics are somewhat easy to identify; however, you’ll find differing professional and personal opinions on whether or the degree to which it is a mental illness.

What I do know is that Mae had been presenting my husband and I and her school teachers and administrators a host of behaviorial challenges that seemed beyond average for a child her age. At the start of first grade, she was still having emotional meltdowns that one would expect of a toddler, though her verbal skills were phenomonal. She would lose control of her emotions, especially during play, and cry for 20-30 minutes. The thing that scared me the most was her tendency to declare that nobody wanted or loved her. It would take a lot of coaxing to bring her out of that place. I didn’t think she suffered from depression; however, I feared that she would or could one day.

She is an incredibly social creature. She would introduce herself to complete strangers, children and adults, and invite them to our house to play within minutes of meeting them (including grown men). She would run off and leave us in public places if there was something interesting within viewing distance that caught her attention. Her impulsivity and strong desire to touch soft things like skin, hair, and ears made us fearful that she was vulnerable to abuse or kidnapping or both.

When she was six, we took her to a pediatric neuropscyhologist for an evaluation. Among other interventions, he recommended cognitive behaviorial therapy to help Mae learn skills to manage her emotions, control her impulses, and be more flexible.

I don’t know if Asperger’s is a mental illness. I do know that the therapy, which I view as a mental health solution, and additional supports given by her teachers and school administrators have been helpful to me and her. Mae knows that there has been a ring of support around her and safe places for her to express herself. At eight, she is more mellow and flexible. I believe that better, more informed parenting skills on my and my husband’s part and just plain old maturity have played a role and will continue to be important factors.

Mae hasn’t seen the therapist in over two months. However, she will if I think it would be helpful again. I’d like to set her up for success in every aspect of her life, and if there are solutions within the mental health community, then that’s where I’ll be.

Does Mae even have Asperger’s syndrome?

Yes . . . no . . . maybe.

At the appointment to discuss his findings, the neuropsychologist said that Mae is “borderline” Asperger’s. He could have gone either way with the diagnosis. She could just be intellectually gifted, social and “quirky.” Other professionals had offered a similar opinion.

Here’s where I have to acknowledge an immense privilege I know many others lack in treating mental (and other) illness. Rejecting or declining a diagnosis would have meant losing the opportunity for insurance coverage for therapy and legally required accommodations if we switched from private to public school. The mere fact that we could have walked away with a “no thanks” belies the advocacy that so many individuals and organizations engage in to de-stigmatize and promote greater attention to and support for mental health issues.

The other aspect of privilege here is that we were able to pay out-of-pocket for therapy visits, $150 each, which were weekly, then bi-monthly, and then monthly. Fortunately, our insurance company reimbursed us for most of the cost. It is no surprise to me that even folks with awareness or a diagnosis are untreated.

My family has been fortunate in so many ways. I know that others struggle with more complex and pervasive mental health issues and fewer resources to address them. I do believe, though, that I can share in a common resolve to better understand and support those who have or love someone who has a diagnosed or undiagnosed mental illness.

Namaste.

Back to Cruel

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School hasn’t started yet, and it’s already not going the way that I planned.  Ms. J, who looked after Mae after school last, including making sure her homework was done, informed me last week that she hadn’t yet received commitments from any other families for her at-home after school program.

As her youngest child is a sixth-grader, she knows, and I agree, that he and a second-grader are not ideal playmates.  Ms. J shared with me that she thinks that Mae needs a smaller, more structured program than that offered by her school, where Ms. J works and has seen some of the trouble Mae has had in her interactions with other students and some teachers.  Ms. J remembered that I’d approached her originally about help with finding transportation to an aftercare program in our neighborhood, and offered to drive Mae there.  So, that was good news.  I also appreciated that Ms. J called me and asked to talk face-to-face.  She didn’t want to email me or talk in detail over the phone.

Fortunately, there is still space in the neighborhood program.  It costs about an additional $100 per month over Ms. J’s place, plus whatever we’ll pay Ms. J for transportation.  In total, we’ll pay per week what Mae’s school charges per month for aftercare.  All for a child who is quick to complain that we don’t take her enough fun places and all our vacations seem to be in SC.  Oh, I wish I had started adding from day one.

And, I’m wondering if we should be doing more for her social skills.  Playgroup sessions again?  An aide to be with her during recess at school?  At her last appointment with Dr. Laura two weeks ago, she had a meltdown right smack in the middle of the session.  Jay was with us because Hubby was out of town.  He was playing with a plastic truck on the rug, and put it down to pick up another toy.  Mae and Dr. Laura had been discussing how camp was going, and Mae left the conversation and went over to pick up the truck.  She did so quickly and then jumped to the other side of the room.  Jay began to protest, and Dr. Laura insisted that Mae hand over the truck.  Mae did so reluctantly, arguing that Jay wasn’t using it.  The doctor pointed out the cues that Jay wasn’t done — he’d put the truck down  near him and he sounded upset when Mae picked it up.  She asked Mae what else she could have done to get the truck.  Ask Jay if he was done with it?  Ask for a turn afterwards?  Then, the tears started.  Then, the arguing — she could play with it if she wanted to because he wasn’t using it.

Jay and I went to the reception area and left Mae and Dr. Laura behind the closed door to try to work it out.  I don’t think it worked at all.  The crying continued except for a short break until the session ended.  By that point, Mae had decided that Dr. Laura was mean and she never wanted to see her again.  Frankly, I was a little surprised and disappointed that the doctor couldn’t turn the situation around.  I’ve seen this behavior at home, and I can intervene without a meltdown ensuing.  Maybe Mae was more dug in because it was her first such encounter with Dr. Laura.  I’m not ready to break up with the doctor just yet, though I did have a moment when I thought, “$150 for this?  I can do better for free at home.”  I should avoid judging too quickly.

So, one and a half weeks until school starts.  New teacher, new after school program.  Maybe the same social skills, maybe not.  I expect the beginning will be rough for Mae.  Hopefully, she’ll adjust and find a rhythm before too long.

“I COMMAND You!”

I have to say, it wasn’t a bad weekend considering that I canceled my “freedom trip” to NY, as one reader put it in a comment on my last post.  Healthwise, I felt fine for the most part, except for some heartburn and more numbness.  The biggest scare of the weekend actually came from arriving to our neighborhood on Friday afternoon to find our street blocked at both ends by police cars and a huge bomb squad vehicle in the middle of the block.  We made ourselves scarce while they investigated and detonated a suspicious package.  So, living near a judge has its benefits when it comes to snow removal.  Not so much if there is some disgruntled former defendant who knows the judge’s address (actually, that’s pure speculation.  I don’t know the full story on the package).

On Saturday, Hubby and I took Mae and Jay to the Maryland Zoo at Baltimore.  I am not much of a zoo fan; however, for the kids . . . .  After we paid $56 to enter (as compared to $0 to visit the National Zoo in DC), I was hoping that I would at least find it to be worth the money.   I was pleasantly surprised.  There was a lot of shade and the exhibits were closer together it seemed than those in DC.  The animals were closer and easier to spot than I recall in DC, and I believe more of them were active.  I have to say that it was an enjoyable visit.

It’s hard to say whether the kids enjoyed it.  As we headed for the exit after a few hours, I asked Jay if he liked the zoo.  He said, “Not that much.”  I asked what was wrong.  He said, “I didn’t know we were going to stay so long.”  It’s a no-win.  If Hubby or I had suggested leaving before he could see the elephants and lions, I know we would have had a problem.  I think he was enjoying the zoo before he became tired near the end.

As we neared the exit gate, Mae decided that she had to have a water bottle/fan thingy that I’d said “no” to on the way in as part of my “we’re not here to shop” spiel.  Oh, but tired Mae is irrational Mae.  A meltdown ensued, which included at one point, her telling Hubby, “Turn this car around now!!  I COMMAND you.”  He and I couldn’t help but laugh.  I didn’t laugh for long and turned around to tell her that she was being rude and disrespectful, and that she cannot command anyone, especially her parents, to do something.  She yelled back, “You’re not the boss of me!”  I corrected her that, actually, we are the bosses of her.  She apologized after a few minutes, though she wasn’t done crying and pleading for the fan for a few more miles.  She went to sleep, which Jay had done already, and Hubby carried her and Jay into the house when we arrived home.  They finished their naps; thank goodness for a little window of peace.  When Mae awoke a couple of hours later, you would not have known at all that she had had a conniption.

The rest of the evening felt like a breeze.  The hi-light came when Mae and Jay helped me make red velvet brownies.  I pre-measured everything; they poured and mixed.  I’m so proud of them for following instructions and working together well.  They stayed with me all the way through making the frosting and waiting for the pan to cool, long after Hubby had passed out somewhere.  I thought for sure Mae and Jay would become tired and irritable, and I’d have to put them to bed.  At 12:30 am, they had the first bites and declared success.  We all went to bed shortly after that.

Today, Sunday, was a day of laundry, cooking, cleaning, more baking (another batch of brownies for my co-workers, with my star helpers at my side again), and playing.  I feel something like a star myself.  First, Jay let me be the fire chief when we played rescue, which is huge because he usually has to be the leader in every game we play.  Second, Mae told me that I am “one of the best mommies ever” (I know — kids tend to think that they have the best mommy or daddy in the world.  I’m not mad at Mae, though.  Truth be told, I love my mom, but if Paula Deen would take me, I’d follow her home in a hot minute.)

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.

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