Shattered Sight

My daughter and I love the TV series "Once Upon A Time".  We love it because it's whimsical, and it takes all of the fairy tale characters and weaves their stories together into something everyone can relate to.  Snow White isn't perfect, and the Evil Queen has some good hidden deep down inside.  In the end, in spite of all their magical powers and true love, they're all just people who change and evolve over time.

The end of season four saw the casting of a dreadful curse called "Shattered Sight".  The Snow Queen, out of hurt and anger, a desire for revenge and love and also because of her own twisted personality, cast an evil spell called "The Curse of Shattered Sight".  It engulfed the entire town and caused everyone to see the worst in each other.  People began to fight.  They hurled insults, they broke things, and things just got uglier and uglier.

Sometimes, if you're not careful, you can become a victim of "shattered sight" in your own marriage.  This is especially true if you have a child with autism or one or both of you deals with adult ad/hd.  While the divorce rate for couples with an autistic child is about the same as couples who have "normal" children, the stress levels within that marriage are certainly higher.  This can be due to a number of factors, but in my humble opinion, the prevailing factor would be that the special needs child requires much more attention and flexibility than other children.  This impacts the search for caregivers if parents want a night out, and it also impacts the attention the parents pay to each other.  Parenting a special needs child is exhausting.  At the end of the day is difficult to have any kind of energy or to even want to "court" your spouse.  You just got done with a two hour temper tantrum.  You don't want to know how another person's day was.

The other factor, adult ad/hd, is actually much more lethal to a marriage.  People with ad/hd experience divorce rates at twice the norm for couples who don't deal with it (Melissa Orlov, The Ad/Hd Effect on Marriage).  This is especially true if the ad/hd is undiagnosed or the person who suffers from it won't admit that it's a factor in marital problems.  These problems occur mainly because of misunderstandings.  The ad/hd spouse doesn't understand the frustration that his/her non-ad/hd spouse exhibits on an almost daily basis.  The non-ad/hd spouse doesn't understand how his/her spouse's brain works, why they forget things, why sex is not a big deal to them, why they sometimes over-react in a tense or angry situation, and so forth.  Soon this series of mis-communications develops into a an ever-widening gulf of resentment and avoidance.  At that point it's easy to view one's spouse in the worst light possible, to criticize, to judge, and to assume that the spouse doesn't care or want to understand.  Pretty soon any tender or sweet feelings you may have had toward your spouse evaporate, and there's not a lot left to work with.

So what's the cure for these types of issues?  In the case of autism, it's helpful to understand that all parents who receive this diagnosis for their child do go through a basic three step grieving process (Stage Theory Cycle, Gargiulo).  Upon receiving the diagnosis that their child has a disability, often in the profound sense, parents will experience a sense of shock and denial accompanied by grief and depression.  This is followed by guilt, anger, shame, or just ambivalence.  The final stage is acceptance and adaptation.  The problem is that two parents will go through this cycle, but they will not experience it in the same way or experience it "together".  They may often find themselves hopping back and forth between feelings, and some never reach the third stage at all. (Metcalf and Gargiulo, Teaching in Today's Inclusive Classrooms, p170) The best thing that parents can do, upon learning that they have a child with a disability, is to recognize that they will adapt to and understand the situation best if they agree, then and there, that they will handle it as a team.  This means respecting each other's feelings and frustrations, even when they're not shared by the other party.  It means recognizing that the adaptation must take place together, and that the two of them are each other's best support group.  Sadly, this isn't always the case and many parents find themselves floating on the sea of autism alone, when they should have been swimming together all along.

In the case of ad/hd, I cannot stress enough how important it is for the non-ad/hd spouse to educate him/herself about this condition.  It's more than not paying attention.  There are a variety of factors and complications that accompany ad/hd.  According to Dr. Daniel Amen who founded the Amen Clinic, there are also several sub-types of ad/hd.  On the flip side of that coin, the ad/hd spouse must recognize that the condition does have a profound impact on marriage.  Making an effort to understand the non-ad/hd spouse and why they react a certain way to these factors will go a long way toward mending hurt feelings. In either case, a monumental effort is required in order for the marriage to work.  The non-ad/hd spouse should refrain from criticism.  The ad/hd spouse should recognize that his/her partner is probably doing the best they can and may not understand everything the partner is going through.

In conclusion, the easy way out is to not deal with the problems in a marriage.  The easy way is to blame, to make excuses, to refuse to take responsibility, and to see the other person as their worst self.  The easy way out is to hide mistakes, to drift away, to stop communicating.  The hard way, and the best way, is to dig your heels in and refuse defeat.  In some cases, this may not be possible.  My hope is that someone reading this will be uplifted and inspired to get the help they need. Curses can be broken.  But sometimes it takes a village.

All Together

After wrangling with our local MHMR group over services for Logan and finding that there really wasn't a lot available in town for people with disabilities to receive support, I decided to just start my own group.

I contacted the director of our ISD special ed department and the school was supportive.  Uninvolved, but supportive.

The first meeting was held October or November (I'm  not sure now...this has been such a stressful year that some things just blur together).  I can't tell you how nervous I was to get up in front of a group of people (even though it was small group and people I knew) and just start talking.  But then, an amazing thing happened.  People opened up.  People got comfortable.  By the end of it they had smiles on their faces and they are still telling me how glad they are that we started it.

Last week we had our first "planning" meeting.  We picked a name for our group and we also discussed some things that we would like to see happen in the upcoming year.  The focus of our group is to provide support for parents and caregivers of children with disabilities, and to foster that support in an accepting and positive atmosphere.  We also want to make an impact in our community and gain more members.    I'm excited to grow this resource for people with autism and other disabilities, and I know our other founders are, too.

“Now ye may suppose that this is foolishness in me; but behold I say unto you, that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise." Alma 37:6

Persistence

Surrealism isn't my favorite but I've always loved this painting, "The Persistence of Memory" by Salvador Dali.  It's become iconic and almost everyone knows the art, if not the artist.  I didn't realize until I took an art appreciation class that the odd figure on the ground in the middle of the painting is, in fact, a self portrait of Dali himself.  He put himself in the painting. Literally.

As a writer I can understand why he would do this.  When you're creating something, it's almost impossible not to put yourself in what you're making.  Pieces of your own personality, the pain from past experiences, the hopes and dreams you have, all of it goes in there somehow, symbolically or in the form of a character.  Try keeping yourself out of it and you have a very bland story.

I also love this painting because to me, the distorted watches mean that time is nothing.  I've tried to train myself to think this way and it's worked.  And it's true.  I've met many people who complain about getting older, whose backs are bent under the burden of regret and who limit themselves because of some preconceived notion that a person in their circumstance or age shouldn't be able to do what they want to do.  These beliefs mean nothing to me.  We are given a finite amount of time on this earth and I intend to use and enjoy and every bit of it.

Happy New Year!

It's New Year's Eve and I've just ordered a pizza.  Two of my four kids are at a relative's house, the other two have started the countdown to bedtime.  It may not sound glamorous but I can only sit here and appreciate how blessed I am.

I'll finish my associate's degree this year.  I'll sell houses and travel.  I'll write the second draft of a novel and cook lots of delicious meals and see movies and plays and have the time of my life.

Because that's the secret.  I've discovered this in the last, I don't know, week?  The best way to enjoy life is to travel lightly.  I let go of a lot of baggage and worries that were weighing me down...that had weighed me down...for years, and I feel so much better.  Lighter.  The secret to life is to enjoy it.  Every minute, every second, because they all count.  Bad times may come, but better times are ahead.  I've been blessed with fabulous friends, old and new, and a wonderful family.  I can't wait to get started on 2015!

Breaking Chains

One of the most liberating things is realizing that you don't have to make excuses anymore for people who hurt you or make you feel bad about yourself. You're not responsible for fixing someone else's broken soul, nor are you responsible for ensuring their happiness on a daily basis.  It's not your job to take the blame for their disenchantment with life.

Sometimes, when we love someone, we make a lot of excuses for poor treatment.  We love them and want them to be happy, so we tell ourselves that the way they speak to us and the way they treat us is justified.

It's amazing when you realize that no, it's not okay.

It's even more amazing when you start to realize that putting up with it is a choice, not a life sentence.

So It Begins

Yesterday, I took Logan to his appointment at our local mhmr.  Why do we go to an mhmr?  Because, every door we've knocked on to try and get Logan psychiatric care has been closed in our faces.  If you want psychiatric help for a child, you either need to be a private pay patient (which can cost thousands of dollars), or go through months of waiting lists.  We went to several different places that either told us they could not help us or that we needed to take Logan to the ER if he had an episode.  So, when the mhmr said they had a pediatric psychiatrist that would see Logan, I was thrilled.

This is how the first meeting went:  An elderly gentlemen came in to the office and sat down.  Spread out on his desk and open for all the world to see was another patient's case file, which referred to that patient as an "incompetent person".  The man had a thick file folder, which belonged to my son.  He asked me to "fill him in" because he hadn't read through the file at all.  (We'd been waiting to see this man for about three months. He had plenty of time to familiarize himself with my son's case),  So, I filled him in.  While we were in there, my son rocked back and forth, making lots of noise, asking constantly to go home, hitting himself on the head because he was anxious and frustrated.  When my older son took Logan out of the room, the doctor looked up from skimming over my son's file and said, "Thank you."  Not once did he look at my son, try to speak with him, reassure him, or anything of that nature.

Meanwhile, my two year old daughter was yelling because she was tired of being in her stroller and didn't understand why she couldn't run around and get into everything.  The good doctor looked at her, and told me "That's not normal."  "It's not?" I asked.  "No, all that yelling and noise, that's not normal, is it?"  

He went on to inform me that I could put my son in a home if he became too hard to handle.  He said he could not help us beyond providing medication management for Logan.  The session was over.

The second time we went to see this crackpot (because Logan does need medication, that is a fact), we were led into a large conference room with a tv.  We were told he would be visiting with us via Telemed.  In other words, it would be a video conference call. Unfortunately, the clinic could not bring him up on the screen and the internet was down.  This was after they took Logan's vital signs at the same time they were taking another lady's.  (HIPAA violation number 2).

Disgusted with the entire procedure, I informed the nurse (or whatever she was), that we were not told this would be a telemed appointment, and that we would be leaving.  I later found out from the mhmr rights officer that they have had numerous complaints regarding the telemed system.

I was also informed by the rights officer that Pecan Valley MH/MR does not have an autism division, and that the "director wants to start one, but the funding just isn't there".  

Now, let me tell you what is absolutely, completely WRONG with this entire scenario.  You have a pediatric psychiatrist who has admitted openly that he "cannot help".  By his very words and actions, he has displayed an uncaring attitude towards his patient, my son.  You have staff that fail to inform patients that they will not be seeing a doctor in person, they will be communicating via a tv screen, which, in my humble opinion, is a completely ineffective method for treating autistic individuals.  You have medical staff taking the vital signs (weight, blood pressure) of two patients at the same time.  (Hey, maybe the lady next to us didn't want to do that in the company of strangers!)  You have an mhmr in the state of Texas who is supposed to provide services to an autistic individual under the general revenue fund, saying that they can't because there are no funds.

The system is so completely broken it's a nightmare.  I sat there while those people fiddled with the tv screen, watching my son lay his head down on his arm, and just got angry. Why should he have to put up with this because no one knows what they're doing or they're unwilling to help?  He deserves better.  All people with mental health issues do!  

I can only say that this is the beginning of a long fight.  If I can make a difference for one person, even if that person is just my kid, then it's a start.