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Posts tagged ‘social stories’

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.

It’s Shark Week

Mae is near the end of her first week of camp at her regular school and it’s been a so-so week.  Monday was the hardest day so far, and the tough parts were during unstructured play time.  My poor babe had trouble getting that there are times when little boys playing their handheld game systems would rather not have a little girl looking over their shoulder or sitting at their knee looking over their arm.  Monday evening, we read and talked about a social story I wrote for her about what you can do when someone says”no.”  I understand that it’s confusing for her because, she says, sometimes the boys would let her watch them play, and she “wasn’t doing anything wrong.”  That’s been one of her most used lines this week.  Emphatically, “I wasn’t doing anything wrong.”  It’s always the other kids; they are mean and they get her in trouble.  I did get Mae to agree that if someone says “no” the first time she asks to play, then she won’t ask again and she’ll look for something else to do.  I know it will be hard for her to honor that every single time.  Hopefully, she’ll remember at least some of the time.

Today, Mae declared that she doesn’t want to go to any summer camp at all at this point.  She had a tough day, which she seems to measure now by how much she cried.  Monday, she cried almost the whole day.  Tuesday and Wednesday, she only cried once (said each day in a positive tone as if to make me feel better).  Today, she cried a lot.  It was some of the usual stuff — she thinks some kids were ignoring her when she wanted to play with them and she says a fourth-grader threw her to the floor while they were playing sharks and minnows.  After the latter instance, the teacher made her sit out for five minutes and “nothing happened” to the boy.  Hmmm.  Sounds like there is more to that story, and I’ll ask the teacher about it tomorrow if I remember.

I know at least some of today was good for Mae because she was playing happily when I arrived at the art room.  Once she and Jay were buckled into their seats, they were both excited to tell me about the Mad Science demonstrations they had seen (the week-long Mad Science camp was canceled due to low enrollment, but the school arranged for one Mad Science day).  Mae and Jay both said it was the best part of their day.  And, Mae was wearing a yarn necklace that a fellow camper had made for her.  Unfortunately, Mae sometimes lets one negative incident define the whole day for her.  She is the minnow and all the other kids (and sometimes the teachers too, as she tells it) are the sharks.

I have my own measure for how Mae’s day goes.  If Hubby and I have a day with no phone calls, no emails, no conversations with the teacher at the end of the day, and no glares from other parents picking up their kids, then that is a good day.

I will be out-of-town next week for a job-related conference in California, which means changes to routines, and . . . oh, I’m just not going to even think about it right now.  Hubby will have to dust off his superhero cape.  I will instead think about the packing I haven’t done, which is almost all of it.  More precisely, there is one outfit at the foot of the bed and the suitcase is still in the closet.  I intended to log into my work computer this evening to try to get ahead on some things, and that is clearly not going to happen now.

I will give myself credit for going to the gym this evening, which I considered not doing because I still have unanswered questions about my health.  I still feel fine, despite the numbness that continues to rove from limb to limb.  I’ve had normal results from a carotid duplex (ultrasound of arteries in my neck), EKG, cardiology consultation, MRI, neurological consultation, heart ultrasound and basic blood work, which all indicate no MS, brain tumor, or stroke.  Today, I had five vials of blood drawn for more extensive bloodwork to test for things diabetes, HIV, blood cancer, thyroid abnormalities, and vitamin deficiencies.  Boy, oh boy, does a vitamin deficiency sound delightful right about now.

I have at least one more task to complete before I go to bed.  I have to send an email to the supervisor of the lab I went to for the bloodwork.  I’m anemic with small veins and normally low blood pressure.  The first lab worker who tried to get blood from me was unsuccessful after poking both arms, not an unusual experience for me.  I asked if I could return later in the day after drinking more water.  When I returned two hours later and Lab Worker #2 was told that I had been there earlier and my veins wouldn’t cooperate, she placed her pen on the counter firmly and put on a “Don’t worry, I’ve got this” face.  I thought, “Oh boy, an ego trip is coming on and I’m going to get poked relentlessly because she has to prove that she can get blood from a stone.”  I learned to ask for another nurse or offer to come back later if I get a cocky one.

Fortunately, yes, Lab Worker #2 accepted this as a challenge, and she was smart about it.  After her first poke came up dry, Lab Worker #2 switched to the other arm.  She tied the rubber band thingy above my elbow.  “Uh-uh.”  The veins didn’t look or feel good, so she didn’t bother to poke.  She removed the band and tied it around my wrist, very, very tightly.  Then, she placed a heat pack on the back of my hand to increase the blood flow and make the veins bigger.  That was a first for me, and it worked.  Lab Worker #2 was kind and apologetic throughout the process and asked several times if I felt ok.  So, I told her that I would send an email to her supervisor to say what a good job she had done.

After that, I’ll get some zzz’s and get cracking in the morning.

Getting Back into the Swing of Things

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Four days after the kids’ vacation with Nonny, and we are trying to get settled back into a routine.  The kids are resisting, complaining that they don’t have enough play time in the evenings, which I don’t understand because they play all day at camp.  During the school year, baths began at 7:45 pm, with reading and bed immediately after.  This week, the earliest they have gone upstairs is 8:40 pm.  I do feel kind of bad ending their play time while there is still sunlight outside.  However, they wake up more easily and they tend to be more cooperative when they get more rest (although more rest is no guarantee for more cooperation).

Mae seems to be doing ok at camp.  This is her first time at a camp outside of their school since she started there at age three.  She is not raving about camp, but she hasn’t complained yet either.  I exchanged emails with the camp director last Friday about some of Mae’s biggest challenges — transitioning to new or highly stimulating environments, heavy crying if play doesn’t go her way, and speaking or acting without thinking first, and tips on what seems to help her manage better.  The head counselor for Mae’s group is an early childhood education major and has a younger brother with ADD, a disorder that shares several characteristics with Asperger’s.  So, I have some confidence that he and the camp director know what to expect and how to manage.

While the kids were in SC, I managed to write six social stories for Mae, including ones on speaking with respect and unexpected changes, and mailed them to her at Nonny’s.  I wanted to introduce the stories before camp began.  She said the storybook I made was “great,” and, unfortunately, we haven’t had a chance to sit and talk about it or go over the stories in detail.  I have not been the most attentive parent this week as I’m trying to get the house ready for company and for Jay’s birthday party this weekend.

Jay is still being a little snarky.  On Monday evening, he told me, for no apparent reason, that I can’t come to his birthday party.  Then, he expanded the ban to all moms and dads, which made me feel a little better.  My first thought was, “Mmm, cake all to myself.”  When I’ve picked him up from camp this week, he has been sooo disinterested in seeing me whereas I used to get a run-up-and-hug and huge grin, kind of the way he got all excited last night when I told him that Nonny wanted to speak to him on the phone.  All that aside, we had a major breakthrough last night at bedtime.  I told him, “I love you” and started to walk away from his bed.   He said, with his monkey pillow half covering his face, “I love you too.”  Because I’m accustomed to not receiving a response to “I love you,” I had to do a double-take.  I almost asked him to repeat it in case I didn’t hear him correctly.  Then, I decided to just go with what I think I heard.   I smiled and said, “Thank you.”

Then, I got out of his room quickly before he could change his mind or tell me that I still can’t come to his party.

 

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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