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Posts tagged ‘tactile seeking’

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.

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Heat, Snakes, Heros, and Love

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We woke up Saturday morning to a blanket of icy snow. It was enough to get Mae and Jay to whooping and donning their boots. They stomped around the front yard, enjoying the sound and feel of crunching their footprints into the sheet of ice-snow. And, on the very weekend that Ole Man Winter settled into the DC area, our furnace went kaput. I think we’ve lost heat at least once every winter since we moved into this house over six years ago. I am so hoping that the technician will declare the unit a total loss so that we can get a new one under our home warranty. I know, I know . . . but I can dream.

On Saturday, we took Mae and Jay to an area children’s museum. It boggles my mind that Mae can ask the curator to take the boa constrictor out of the cage so that she can pet it, yet, she calls for her dad when she sees an ant or spider in the house. Maybe the latter is a damsel in distress thing. Maybe she enjoys seeing her dad in the hero role, which is cool because he’s awesome like that.

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On Sunday, Hubby and I made a delicious spinach and lentil soup. He came into the kitchen and said, “Can I help you cook?” Best words I heard all day. I enjoy cooking, so I was happy not in terms of relief, but that he chose me over football during playoff season! Cooking is something we enjoy doing together and hadn’t done in a while. Bonus: while the lentils simmered, we made guacamole for the first time. Well, it was something like guacamole because we added a tomato, which I think made it salsa. Also, we don’t have a proper stone mortar and pestle set, so we mashed the avocado and other ingredients together with a fork. We stood right at the counter and devoured the whole bowl. For the record, we are not totally greedy and selfish. We did try to convince the kids to try some. No dice on the guaca-salsa, but Jay, starch lover that he is, did try the multigrain chips and asked to have some with his lunch.

Then, I tried to convince them to try ants on a log. A few weeks earlier, Jay had asked us to buy celery so that he could try it (Thank you, Wonder Pets). I thought it unlikely that he would actually eat the celery. Since he likes peanut butter and raisins already, I thought maybe he would take at least one bite of the combination. He and Mae were tickled by the name, and uninterested in a taste. Frankly, I had trouble keeping my mouth from twisting as I demonstrated how fun it would be to eat “ants.” Unable to get them on board, I went back to the kitchen and gave the rest of the log to Hubby. Yuck.

When the soup was done, Hubby and I had a taste test — one bowl, two spoons, standing face-to-face with the soup between us, heads bent into the steam, taking turns with our spoons. Yummy! Best.soup.ever.

Our kitchen adventures over, I took Mae to one of her friend’s birthday party. Yes, she was invited to a girl’s birthday party, and a girl that she likes! Even better, Mae got to sit by K, the little girl whose friendship she seems to value the most. So, Mae was really happy while she painted her ceramic mug. In the down time between the ceramics painting and cake serving, Mae got antsy and started jostling with K. It was the kind of horseplay that can easily and quickly turn and led to someone getting hurt. As I walked over to remind Mae that she can play without touching, I heard her explaining, “I’m using your own power against you” (Thanks, Avatar). I took her on a tour of the ceramics shop to look for gift ideas. After a few minutes, she was ready to go back to the party room and I reminded her again to keep her hands to herself, and warned that if she couldn’t, we would go home. Others were still eating cake when Mae went back in, and since she only eats chocolate cake, she had nothing to do. Idle time is not my girl’s friend. When she and K got to jostling playfully again and I heard another mom telling them to cut it out, I got Mae’s attention with my hands and motioned for her to get ready to go home. The party was winding down anyway as there were no other activities planned. Mae was disappointed, but she came over without complaining. As we walked to the car, she put her head down and said that she always messes up. I told her that’s not true, and that she often makes smart choices.

In retrospect, I think I should have just pulled her out of the party room for a few minutes to make the point. Maybe I was too hard on her. The funky thing is that I know such horseplay is more acceptable among boys. I feel like I’m forced to play to a double-standard. I want Mae to be seen as a good playmate in front of other parents and kids so that they will be more accepting and inclusive, and that means I have to encourage her to “play like a girl” when truth be told, she prefers to “play like a boy” with girls. My sense is that K would rather not horseplay, and that she goes along because Mae has a strong personality. Leaving the party early allowed Mae to get out before she got on K’s nerves or got into any serious trouble. I realize that Mae may not be able to appreciate that, but I like to think I saved her from something. K came over to give her a big hug before we left, and I call that ending on a good note.

I’m no spider-squishing hero, but hopefully, one day Mae will understand that I tried to make her life a little less scarey, even if I didn’t always go about it the best way.

When the Tables Turn

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I started typing this post while I lay in bed this morning listening to a conversation between Hubby and Mae. It all began last night when they fell out over the TV.  Mae tried to plead her case, and it didn’t work.  Hubby reclaimed control of the TV, and Mae cried for a while and told him how upset she felt.  (For the record, I warned him that adding a Netflix subscription to the big TV and proceeding to let the kids order cartoons would lead to problems.  The “big TV” in the family room is for adults, and the “little TV” in the play room is for kids.  But, who listens to me?)

When Mae came to our bed this morning, we told her we were still sleeping and she could go downstairs or back to her bed.  She was intent upon snuggling up close to her dad.

I heard Mae say, in a calm and serious voice, “I want to talk to you some more.”  She went on, “I want you to be the daddy I can trust and not the daddy I can’t trust.”

Hubby began to speak, and Mae said, calmly still, “I’m not finished talking.”

“I want you to be nice to me.  I was talking to you about your need to change.”

Then, Mae touched one of Hubby’s ears, and he told her to stop.  She likes the softness of ears, especially his.  She rubs her own often too, and she used to rub Jay’s a lot.  If I catch her touching Jay’s ears, I make her pay him two mickies.  If I see her reach for his ears and stop her self, I give her mickies and praise her self-control.  She rarely touches mine because I’ve been pretty clear and consistent about boundaries.  Sometimes Hubby tells her to stop and sometimes he doesn’t.  So, she has made less progress with him.

Anyway, after a few moments of silence, Mae extended the olive branch.  She asked Hubby if he would go down downstairs and watch TV with her.  She added, “I love you more than anything or anybody in the world.  I just want to spend some time with you.”

Then,

Besides, we’re all one. When I touch your ear, I’m touching mine. So, it doesn’t really matter. We’re all a family; we’re all one.

Hubby responded, “We’ll still be a family. Even in a family, you have to respect personal space.”

Mae said, in an almost cheery voice, “Ok.”

At that moment, Jay emerged from across the hall and joined Mae in trying to get Hubby up and downstairs for breakfast.   And so the day began.

And, a good day it was.  I didn’t leave the house once.  Even though I didn’t relax much, not running errands or attending birthday parties feels like an accomplishment.  Mostly, I stayed in because I had to shampoo and braid Mae’s hair.  That was about three and a half hours of work total.  She is usually a trooper about getting it done.  Today, she gave me a fit during the blow drying because she wanted to be in front of the TV.  I told her the noise would make it difficult for Jay to hear the TV, which wouldn’t be fair.  It takes twenty minutes or less to section and blow dry her hair, and normally she gets through it fine if she reads.  Today, Mae literally stomped my foot because I wouldn’t let her watch TV.  The nerve.  I stayed calm, although I did make her wait 30 minutes before she could watch TV during the braiding phase.  My mother and aunts and a high percentage of the black mothers I know would think me crazy or unfit for not popping her with the comb I had in my hand.  This child has no idea.

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Fortunately, Hubby did laundry and bathroom cleaning while I cooked.  And, I baked, which was a nice break.  I made lemon bars, which is one of the quicker recipes in my limited repertoire.  I’ll take most to work and some to my sister.

All in all, it was a good weekend.  Hubby and I took the kids to swim on Saturday morning.  This is their first time having lessons separately, each with small groups of other children.  Mae did a great job of listening and following instructions.  Jay was more comfortable than I’d expected in getting his face wet.  They clearly enjoy being in the water, though both seem to hesitate when new skills are introduced.  I’m just glad that they are willing to go and try to learn.  So, we’ll keep the lessons going for as long as they are willing.

Yesterday afternoon, I took Jay to a birthday party for one of his classmates and he had a blast.  I met a mom there who was featured on the reality show about women who didn’t know they were pregnant.  Her story is so fascinating that I would have gone to the party just to hear it.  I had been skeptical that a woman, even a woman who had never had kids, could not know she was pregnant.  Now, I’m a believer.  This woman, 43 years old at the time, had stomach pains and pressure in her abdomen and went to the emergency room.  The nurses found a baby in her pants.  Wow.

Mae was sad about not going to the party.  It so happened that I had written a new social story — as she had requested back in December, I think — about party invitations.  I showed her the story on Saturday, and she said that she understood it.  I also explained that this party was for younger kids, and that she and Jay won’t always go to the same parties.  She “got it,” though it was hard still for her to watch him and me go out the door.  Hubby said she cried a little after we left.  I think she handled it like most 7-year olds would have.  And, that’s a good thing.

It’s amazing to me that she can go from having a heart-to-heart talk with a grown-up, almost as if she’s the parent, to the usual 7-year old stuff, and everything in between.  I have no idea what the teenage years will be like.

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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