Celebrate Insight, Choice, and Hope. Celebrating Can Be Self-Care.

A young paper wasp queen (Polistes dominulus) ...

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Self-Care Tip #161 – Celebrate your insight, your choice, and your hope to be a friend to yourself.

I realize autism has taken over my life and I’m not sure how I feel about that.

When April said this, I jumped.  The insight into her situation, the implication of her own ability to choose, the hope of what those potential choices might do for her and her children – all these leapt at me, so of course I jumped.  Startled.

April was the parent of three lovely although autistic children.  She was wiping her face.  “I never cry.  I’m usually really strong.”

And then she said those words.  Her realization.  I don’t know how much thought she had put behind them.  She certainly didn’t have much time to self-actualize.  Getting only a couple broken hours of sleep every night.  Responding to complaints from the school.  Springing towards her son every time he tried to hit himself in the head to stop him.  April was busy.  Mostly all that I had been able to do so far in our treatment together was help her kids via medication therapy.  We were clearly still working on things in that department.  She was willing to wait for us to make our slow way towards her children’s health, even though she was falling apart in the process.

Go low and slow.

Nothing like a cowgirl psychiatrist in the saddle.  I try to keep my spurs off and make no more than one medication change at a time.  Then, when something happens, negative or positive, we know what we are looking at.  April’s children were taking their time getting to their therapeutic responses.  But at least we hadn’t done more harm than good.

We had made the changes to our plan of care that we were going to make, and April was about to leave.  She had just said what she said and my mouth was open.  Unfortunately for April, I’m not consistently articulate.

Yes April!

And then she left, while I was still bouncing on the chair.

I don’t know if she’ll celebrate that marvelous epiphany.  If she does, I know her kids will benefit.  I’m confident about that.  If she does what is not intuitive, that is self-care, she will still be able to do what is intuitive.  Taking care of our kids is the most natural instinct.  Wild dragons and other mythical or natural creatures could not keep us away from it.  Now taking care of them well, however, is something that definitely is more likely to happen when we as parents are healthy, too.

For now I will celebrate this.  April has insight.  She has choice.  She has hope.

Yes April!

Question:  What has your life been about?  Where is your choice and hope?  Please tell me your story.

Look Around to Get Strength and Perspective.

My sister and her baby.

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Self-Care Tip #145 – Look around to get strength.

I was talking with my colleague, Janice, who works intimately in the area of group homes and advocating for the clients.  I asked her to tell me something about them.

There are times when parents give up and they can’t provide.

I wrote a blog-post some time ago relating to this as I work with many families who are near this point or past it.  Taking care of ourselves can be hard enough in this world, let alone a disabled child or two, or three…  I’ve seen marvelous results from placements.   However, my blog-post, “Get in Someone’s Space” got a response that was not so complimentary.  I asked Janice about where she thought the comment was coming from.

There are a lot of good group homes but many are not.  The workers are paid minimum wage often and they are saints.  There are about 1/2 and 1/2 that are good v. not good.  They can make a lot of money potentially.  In some of the homes, the workers are ambivalent at best.  It is a job to them.  If they do care but are surrounded by people who don’t care they lose steam.  They can’t do it all.  Emergency homes are also useful to give parents a relief.

Some of the disabled in placement have no family involved.  Others do.  And in those that do have involved family give their family some time to recharge while in placement.  The family can recharge and use that new energy for things like continue to “shop” further for the best fit for placement.  It can be work to find the right placement and get someone moved there.  Then after that challenge is met, families will find other struggles.  Struggles such as placement being so far that the family can’t visit or be as involved as they’d like.  They find, as we all do at some ah-ha moment(s) in life, that we can’t have it all.

Mr. Rick stated it well.

I will not be a victim while choosing my burdens.

We could also say, “I will not be a victim while choosing my benefits,” perhaps.

I understand that the topic of disabled family and/or group home placements may not interest all of us.  It may not appear at the surface to be an issue involving eternal truths.  Yet, we see that it does.  We are, each of us, not so far removed from unfair life circumstances.  From choices that look “bad and also bad.”  Or could we say, rather, that look to be choices between “one benefit and another,” knowing that we can’t have it all?

No.  We are not so far away from the single mother raising her two mentally retarded children.  We are not that distant from the caregiver with license to house five children but can’t find good staffing.  We can see the fetal-alcohol syndrome child who got what he got from birth and will live where they are until they die with staff as their family.

To my parents who can’t give any more, choose your benefits.  They are there.  To my kids who are confused by their own behaviors and emotions, to my staffers who struggle to understand the value of their jobs, to you who feel more of the burdens than the benefits, to all of us, we are the same in this.  We are each other’s “people.”  We have this knowing.

Look around.  Gather strength and make your choices.

Question:  What has enabled your perspective?  What part came without effort and what part didn’t?  Please tell me your story.

It Might Be Your Brain

How are you feeling? If it’s not good, it might not be “you.” It might be your brain.

When you don’t feel good, look at what’s happening inside.  Think about where feelings come from.  It’s hard to use your brain to think about your brain.  (Read more at “Basic but Effective.”)  But what to do?  Doctor Dolittle‘s pushmi-pullyu’s might have been able to tell us something of our missed opportunities by not having two heads and two brains.  (Unfortunately they’re extinct!)

Feeling bad, irritable, guilty, sad, like everything is flat, nervous, emotions that are out of proportion or inappropriate to the situation or trigger?  These feelings might have nothing to do with “you” and everything to do with your brain.  At some point if you get tired of beating yourself for the holes in your purse, if you don’t understand why things feel the way they do, if you want to rest, think medical.

Fred came in with his father, hiding himself in his shirt, in his father’s shirt, like a mouse who couldn’t find his hole.  The teacher from his special education class came in to help give history and told me about everyone’s efforts to bring him out.  Skinny, Fred preferred not to eat in front of people.  He started shaking in strange situations and climaxed into a tantrum if pushed to transition too quickly.  He was vulnerable to physical contact and avoided anyone touching him.  When he was really upset, he banged his head so hard that he had to wear a helmet.  When I asked his parents if they thought he was anxious, they said no.  No he wasn’t nervous his teacher said.  Hmm.

I told Fred’s parents.  I restated to Fred’s teacher.  I just said back to them the story they had just told me.  I told them about Fred and asked them what they thought.  After hearing Fred’s story again, did they think Fred might be behaving this way because he was suffering on the inside?  

We can’t give what we don’t have.  Asking Fred to come out and play so to speak, wasn’t something he had to give yet.

After treatment takes effect, then Fred will be able to pull his head out of his shirt and he will do it without being asked to.  It doesn’t do any good for Fred or anyone else to push him to do behavioral changes if he simply can’t.  Fred is not a pushmi-pullyu.  He has no spare brain to offer when the other is ill.

I told Fred’s father that I thought Fred was suffering inside.  Something in his father clicked.  He teared up and nodded and said “Yes!  He is suffering.”  That meant a lot to Dad.  To know that much about his son.  To know that what had confounded him for so long came from somewhere.  It had a name.  This thing might be treated.  Fred might suffer less.

Self-Care Tip #76 – If you don’t feel good, think about your brain.  Be a friend to yourself.

Question: Do you every feel like you expect yourself to give what you don’t have?  Please tell me your story.