Professor Mother Blog

May 3, 2010

Back to Our Regularly Scheduled Program

Filed under: ADHD,Bipolar,Twice-exceptional — profmother @ 9:39 am

Oh what a lovely reverie this last week has been- preparing for finals, the pause before the onslaught of grading and the relative calm of the children…

Interrupted by oh, such a night after our Derby party.  Probably a little too much homesickness.  A little too much excitement.  A little too much giddiness with betting fever and the resultant anxiety.

Poor Ray has been having a very hard time getting himself to sleep these past few weeks.  He’s been needing a longer and longer time of reading, of having us stay with him until he drifts into sleep.  A longer and longer time while his ADHD medications wear off.  He’s been staying up until 10:30pm most nights- and I finally drag myself into my room only to fall down in my bed.  Or my husband stays with him until James himself falls asleep, coming back to our bed in the middle of the night.  Not exactly quality bonding husband/wife time.  Not exactly quality sleep time.

Saturday night was our firm stance- “I’m sorry.  You can do this.  We will be here and you can come and check in with me every 45 minutes.”  I taught him deep breathing.  I told him he could read until he fell asleep.  I told him he could have the little light on.  I tried to teach him coping strategies.  And I don’t know if he can cope.

He cried for 5 hours, and was hitting himself in the face at one point, sobbing “I hate my brain.  I hate my brain”.   He was genuinely frightened and anxious and kept “seeing robbers” but at the same time, he’s so phenomenally stubborn.   And he DID have his medication patch on until 7:00pm.

Where is the line between being consistent and firm and having it overwhelm him?  Where is the sweet spot where you know that what you’re doing is the right thing?  I feel that with my daughter so often- she protests, I hold firm, she backs down.  I feel like I’m under attack from a pile driver from my son- that his hole of need is so big that I can’t fill it up and I don’t know how to help him turn around and fill it himself.  Autism makes me sad, but this… this… whatever it is, that has no real label, that could be bipolar, that could be ADHD, that is definitely anxiety, that could be giftedness on the edge, that could just be an overprotective mother- this frightens me.  I constantly feel like we’re navigating an uncertain landscape, where the ground keeps shifting and swaying and any mis-step could result in disaster.

My husband and I are generally on the same page and were holding firm together that night- we were NOT going to let him or his anxiety win this round.  But I was crying and James was grim and we had to make a conscious effort to talk to each other- to not let the stress and sadness drive us into our own coping place of solitude.

He fell asleep around 2:00am, keeled over with the lights on, full-blazing and “Calvin and Hobbes” in his lap.  I turned off the lights, closed the door so that he could sleep in, and moved the book so it didn’t hit him when it fell.  And I went back to my room and passed out.  Did I “win” this round?  I have no idea.

He, of course, did not sleep in.  And Sunday, as I watched him play quietly in the living room, firing his “bombs” from his Battleship game that he was playing by himself, and feeling the peace of the quiet house since my husband and daughter were off to a soccer game, I knew that he did not ask for this.  He craves peace and routine so badly that when things get off track, he acts out.  The anxiety gets him.  Add food issues and tiredness to the mix, and he’s a very unhappy little boy- which makes for a very unhappy mother.

April 18, 2010

So Many Stories

Filed under: Autism,Bipolar,Book- Parent's Guide — profmother @ 12:06 pm

I had a book signing in Jacksonville yesterday at Barnes and Noble from 1:00-3:00 where I was at the front of the store as people came in.  It was a lovely day- had I been home, we would have been outside on my bike, or at the beach.  I got a People magazine to read in case I got bored.  Not a chance.  Being at the front means that people stop and talk to you- particularly when they saw the title of the book “Children with High Functioning Autism”.  Seeing the word “autism” makes people stop- and they start to talk.  I talked with-

  • The mother and teenage son who had a neighbor with Aspergers who went to the Youth Group with the son.  Their frustration with the neighbor child.  The worry that their son would start to hate Youth Group because of this child.  Their realization that the child was “different” but believing that the boy was using it as an excuse to misbehave and get attention.  My attempts to convince them that, no, he wasn’t doing it in intentionally, but that he wanted attention- and bad attention is better than no attention.  If they really wanted to change the dynamics, they needed to notice when he was doing the right thing.  They wandered off, not convinced.  Believing that he was different, but that he could change- with God’s help.  That maybe they could understand it out of him.  That they could make him well.
  • The teacher who taught his first year in an upper middle-class school to “get his chops” and then transferred to a school for kids with attention disorders, but a lot of the children also had autism.  He now teaches in an inner-city school, where children go undiagnosed, and disabilities are the least of the children’s issues.  How he will probably be leaving teaching because of the pressure to connect pay to school performance.  How he loves kids who are different, but can’t perform miracles. How he’s tired of the system that asks him to make kids who are ignored and abused and who don’t have their existence noticed, much less their disabilities.  Much less their abilities.
  • The grandfather who spoke broken English who stood in front of my table with tears in his eyes.  ”Do you think that a DVD about telescopes will be too much?  He’s 13.  He loves science.  We don’t know what to do.  This he loves.”  I said “Yes- buy the DVD.”  Barnes and Noble thanked me, I’m sure.
  • The young man with Aspergers who has a degree in film who was there with his mother.  Who discussed his favorite movies with the teacher who was still there.  Who loved college because he didn’t have to pretend to party, but could study all the time.  Who was really cute, but had never had a date.  Who was bussing at a restaurant because he couldn’t find a job.  Whose mother had another son who was also bipolar and who was also at home, but had dropped out of college.  Who didn’t have a passion that drove him.
  • The little 5-year old girl who, with her mother whispering to her, asked me “How did you write a book?”  I had a lovely conversation with her about  how I started with an idea and just sat down and did it, how it took a lot of fixing to become a real book, how my daughter wanted pictures and color, too, but it was all words and I was sorry there weren’t any more pictures for her.  How the PhD after my name meant that I went to school for 22 years and how I loved teaching teachers.  Her mother told me that she wanted her daughter to meet a “real author, particularly a woman”.
  • The grandmother of a 13 year old boy who poops in the bathtub.  She is frustrated and angry and grossed out.  Her grandson lives on the computer and hates school.  Her husband tells her that the child should be the one to clean up the messes, not her.  I suggested that she set up a positive reinforcement system.  That she talk to others.  That she find a support group.  That she reads- books other than mine, which is really more for parents of younger children.  That she knows that she is not alone.
  • And one aunt of a child who has just been diagnosed with autism at age 4 and whose sister, the child’s mother, is grieving.  She bought a book.

It was quite the two hours.  Overall, I sold three books that I wrote, but I am so much richer and full of stories.

February 15, 2010

Splitting out

Filed under: Bipolar — profmother @ 6:34 pm

Whereas the shift to include Aspergers under Autism is one that has progressed naturally, based on two decades of practice and research, medical professionals are breaking out the category of bipolar disorder for children.  The new DSM is proposing a new term, distinct from bipolar disorder, called Temper Dysregulation Disorder (TDD).

Temper Dysregulation Disorder is intended to find help for the child who is consistently irritable, who throws temper tantrums several times a week and has explosive temper issues with little provocation.  In other words, that child that you walk on eggshells around, waiting for the inevitable screaming and throwing.  The one that gets kicked out of preschools; the one that pushes parents’ buttons; the one where you know that something is wrong, but what?

Prior to the 1990s, bipolar disorder was only diagnosed in adults, and it was understood that full-fledged bipolar behavior started around adolescence.  Parents and teachers, of course, could describe erratic behaviors much younger, but the medical professional field did not recognize this childhood behavioral issues as anything other than something that behavior management could control.  Parents were, understandably, upset at the implication that their child’s behavior was caused by poor parenting.

Since the mid90′s, the diagnosis rates of bipolar disorder for children has skyrocketed over 4000%.  Given that it was practically 0% before, this is not unusual for it to shoot up (new label means more diagnosis which means increased rate), but it is still an alarming rate for an “experimental” label.  Along with the label of bipolar comes an inference that it is a biological issue, rather than poor parenting- and biology often implies medication.  The medications approved for adult use are not lightweight medications- these are no aspirins.  Certainly, the use of serious medications on a child’s developing nervous system and physical growth has to be accounted for. Doctors and parents have carefully monitored medications and struggled with trying to determine what is working, what is an appropriate dosage and what other alternatives might work.

The other challenge is that not all people who were identified as having bipolar disorder as a child developed the full range of mania/depression that characterizes adult bipolar disorder.  Many of the children “lost” their label as they aged, whereas some children who had not been identified DID develop bipolar as adolescents.  Clearly, there is no well-established line of determination.

And so now we have TDD- an attempt to bridge the chasm between nature and nurture, between child and adult, between poor parenting and biology, between medication and behavior management.  It’s a “new” label that the American Psychiatric Association hopes will provide options for treatment, for causality… for hope.

It’s a label I’ll be teaching my teachers and one that I hope that brings strategies and ideas.  Good luck TDD…

February 8, 2010

An Unwilling Expert

Filed under: Bipolar — profmother @ 4:49 pm

I got a very unusual phone call today.  A local man is writing a novel and wanted information on the best home environment for a child with bi-polar disorder and ADHD.  Turns out he has a 30-year old son with these issues whom he no longer has contact with and he’s trying to process his grief through writing.  He found me through the university’s contact source and wanted an “expert’s opinion”.

I had to tell him that while a strong, loving secure home can HELP these conditions, it can’t fix them.  Environment PLUS medication can help a lot, and make some issues go away, but the biology doesn’t change the fact that these conditions are there.  I referred him to a counselor and the fantastic book “Beautiful Boy: A Father’s Journey through his Son’s Meth Addiction“  by David Sheff.  While there are differences (Nic Sheff has drug addictions, his son is NOT taking his medications), there are similarities- broken marriage, striving to make an environment where the child can be successful, addiction to the “high” of drugs for one, the mania of the other, loss of communication with the adult child who can’t handle their own life, but really wants to.  Really, over the course of 25 minutes, I learned quite a bit about this man’s life.

As a professional, I can sit in my little office and discuss how sometimes, the person who needs to focus on recovery is the parent.  How the hardest part is providing options, choices, support and love, but ultimately, the child is the one who has to want to change themselves.  How a child can struggle with issues and how we want to FIX things, but we can’t- only they can.  How so much of this is biology and genetics, and you cannot cause these things, and you cannot fix them- you can only deal with them.  I can say that as a professional.

But as a person- as a daughter- as a mother… where is that line where you “allow them freedom” and why does that feel so much like losing them?  At what point does “love” become “tough love”?  At what point does “tough love” become “abandonment”?

As a daughter, I am deeply grateful that my mother did not give up on me and continued to be there when I needed her.  That she listened to our latest crisis and did not declare that it was more than she could handle.  That she continued to provide options.

And as a mother, to what degree do I allow my child to fail before I help him or her?  Do I keep helping?  When do I step back and let them find their own strength?  And how on earth can I ever say “No”?   I can say “no” to little things- “no dessert without vegetables at dinner; no tv without finishing homework; no, you can’t go outside until your room is clean”.  But this man’s son is living on the streets, and he has to say “no” when his son asks for money because he knows it will go for drugs, and he’s afraid his son will kill himself.  And he doesn’t know what to do.

There are no easy answers- I know that.  Parenting is a job that you figure out as you go along.  There are no recipes, no formulas and no guarantees.  I know this with my professional part.  But my mother part will go home, hold my son and daughter, be grateful that I can still kiss away the booboos, and I will pray.

And I will be grateful that all I have to say “no” to tonight is the enforcement of homework on a Monday night and dessert after dinner.  My heart’s with you, sir.

January 15, 2010

More troubling rates

Filed under: Bipolar,Exceptionality issues — profmother @ 10:27 pm

Study reveals hike in bipolar diagnoses in young children
The number of children ages 2 to 5 who have been diagnosed with bipolar disorder and prescribed antipsychotic drugs has doubled over the past decade, U.S. researchers said. Their report adds to the debate over whether children that young can be diagnosed with the disorder and whether they should be given powerful drugs to treat it. Reuters (1/15)

I know and understand this statistic far too well, having lost a family member to bipolar disorder, and watching others deal with it.  Bipolar is a terrible, terrible disease that has gone far too long undiagnosed.  And yet, medication is such a hard decision.  My son has Tourette’s Syndrome.  There are no good drugs for Tourette’s- the side effects of medications are often worse than the very symptoms it seeks to subdue.  For that is what medication often does- hide, not “cure”.  And Tourette’s overlaps with bipolar- a statistic, again, I am very familiar with.  Statistics aside, very dear family members are ALIVE today because of Lithium.  But they describe the feeling of “being constantly underwater” and fight the battle every day.  Every single day, life is a choice for them.  And I admire them every single day for struggling on, and I realize that my life every day is a choice, too.  Life is so precious- Haiti, if nothing else, reminded me of this.

I realized once, when I had been staring too long into the abyss of “what if… what might… where?” that Scarlett O’Hara had a trick for all of us- “I’ll think about that tomorrow”.   I recognize that some decisions HAVE to be made today- right now, right this moment and no one feels ready for them.  But some decisions, some actions, just simply require tomorrow.  And maybe another tomorrow and maybe yet another tomorrow until they must be made.

For people making a choice about medication- remember, you are making the best choice you can with the best information you’ve got at this time.  You CANNOT think about “what I should have/could have/might have done”.  If you make a decision from the standpoint of love, you have made the right decision for today.  And tomorrow’s always another day.

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