Escapes

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Daily Foglifter:  Listening to music assists in pain management, reduces blood pressure, soothes migraines, boosts immunity, enhances intelligence and memory, increases productivity, and promotes relaxation.  Source

A few weeks ago, I received a gift from a reader named Jeff.  After reading my Autism entry, he e-mailed me asking if he could send a relaxation CD to play for my son.  Music is an effective method of relaxation, particularly for those with Autism.  Never one to pass up free stuff, I agreed. 

I will confess that I was a little worried.  When I hear the term, “relaxation music”,  I think of sitars and chanting.  Neither of these things relax me, as I can’t relax when being creeped out.  I had a massage once with some very disturbing demonic chanting.  Completely counter-productive.  When the CD arrived, my apprehension grew when the blurb on the back of the CD case read, “the ideal tempo and rhythm for creative inspiration, massage, yoga, scenic drives, or just winding down.”  At least it didn’t mention meditation.  I don’t have anything against any of these things, I just don’t understand the particular soundtrack people use to do them.

It took a while for me to actually play it.  I usually tune the DIRECTV to my favorite music station (Channel 832, Adult Alternative) or listen to my Playlist on the computer.  I play CDs in the car and since I’m always running late, I never remembered to grab the CD off the desk.

I was feeling really guilty about not listening to it.  Jeff wasn’t pushy.  In fact, he never once contacted me and said, “Why haven’t you mentioned my CD?” or “Have you listened to it yet?”  Of course, that made me feel more guilty.  I immediately put it in my car for the next trip.  And it sat in the CD changer for a week, unheard.

Then, on a day when the kids were being particularly loud and irritable, I remembered the CD.  If it could calm down my rowdy bunch until we got home, that would be high praise indeed.  I turned it on, hoping for the best, preparing for the worst, and was pleasantly surprised.  Not a sitar, singing bowl, gong, or chanter anywhere.  Just a guitar and a piano, playing pleasant relaxing music.    It was playing for a couple of minutes before I noticed the kids had gone silent.  Seriously, not a peep.

I drove for another five minutes when the 12-year-old asked, “What is this music?”

I answered, “It’s instrumental.  It’s nice, isn’t it?”

He said, “It’s making me sleepy.” The other three kids agreed.

DING DING DING!  We have a winner!

This is now my “go-to” CD when the kids are getting rowdy.  They immediately calm down.  They may talk, but it’s in a quieter voice.  I use it sparingly, in fear they’ll acclimate to it, but it still works every time I turn it on. For them and for me.

The CD is  “Escapes” by Jeff Gold.  You can buy or download “Escapes” and more music by Jeff Gold by going to

http://jeffgold.bandcamp.com/album/escapes-music-for-relaxing or

www.jeffgoldmusic.com 

When you enter the code “momfog” in the shopping cart you will receive a 20% discount.  A free download is included with the purchase of a CD. 

“Almost all children respond to music. Music is an open-sesame, and if you can use it carefully and appropriately, you can reach into that child’s potential for development.”  ~Dr. Clive Robbins

Nordoff-Robbins uses music therapy to help over 100 handicapped children learn and to relate and communicate with others.

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What Do I Know? I’m Only His Mother

Daily Foglifter:  “Spectrum”–A broad sequence or range of related qualities, ideas, or activities

I had a very busy week last week with the kids home from spring break.  In addition to all the shopping trips we had to make as a family, we also had to go the doctor’s office.  More specifically, the psychiatrist’s office.  No, it wasn’t for my pending emotional breakdown.  It was for my autistic son who has been having some obsessive compulsive issues.  Why in the world I made that appointment when I would have all five kids, I couldn’t tell you.  Although, any psychiatrist worth their salt would suggest it has something to do with my pesky martyr complex.  But, I digress.

I took all five kids to the psychiatrist’s office and got there on time, only to wait for 1 hour and 45 minutes.  My kids were uncharacteristically awesome.  Of course, I made everyone take their Nintendo DS and forbade them to sit within arm’s length of one another, but they could’ve complained.  They didn’t say a word.  It was a proud moment.  There was a funny moment in the waiting room.  A little old crotchety man in a wheel chair, oxygen tank firmly attached, was irate and summed up what everyone was thinking.

Why make appointments if you’re not going to keep them?  It’s very inconsiderate and he’s a SHRINK for God’s sake!  He should know better!

I love old people.

Well, they finally called Mikey’s name and I took the baby and told the rest of the kids to sit quietly in the waiting room while I go see the doctor.  The nurse asked me, “They won’t get up and go outside, will they?”  Um, no.  We may be in a psychiatrists’ office, but they’re not crazy. Of course I didn’t say that.  I opted for the more polite answer of, “No, ma’am.”  She didn’t look like the type who would take a joke very well.

We were ushered into the Doc’s office and were met by a very pretty med student who would be observing.  Another ten minutes passed and Doc finally made his appearance.  He introduced himself and stretched out his hand, but before I could return the courtesy, his pager went off and he went to the phone.  I waited another five minutes for his conversation, which was medical in nature, to end and then he flipped open Mikey’s file.

  • Doc:  “Who referred you?”  Me:  I answered.
  • Doc:  “What’s the problem?”  Me:  “We need new meds for some obsessive-compulsive issues related to his autism.”
  • Doc:  “How many children do you have?”  Me:  “Five”  Doc’s pager goes off and he makes another ten minute phone call for another obviously more important concern than ours.
  • Doc:  “Is the father in the home, or is it just you?”  Me:  “I’m married to the children’s father and we have always lived together.”
  • Doc:  “Who diagnosed autism?”  Me:  Dr. _________.”
  • Doc (to Mikey):  “How are you?  Do you do well in school?  Do you get good grades?  Do you like school?  Do you feel okay?”  Mikey answers all his questions and the Doc turns to his student and says, “There are no signs of Autism.  His previous doctor had a reputation for misdiagnosing Autism.  That’s why she moved to Florida.”  I wasn’t looking in a mirror, but I’m sure the look on my face was one of shock and awe.
  • Doc:  “What makes you think he has Autism?  Has he had psychological testing?”
  • Me (stammering):  “It began with sensory issues, loss of speech, no eye contact…He’s had tests, when he was three and last year.”
  • Doc (to student):  “Do you see the problem?  Sensory issues…a lot of toddlers have this.”
  • Doc (to me):  “Does he have outbursts?  Is there a history of depression in your family?”
  • Me (still reeling)”  “Yes to both.  But he’s not moody.  He only gets upset if his expectations aren’t met or he feels like he was cheated because things didn’t go according to his plan.”
  • Doc (again to the damn student):  “Depression can present many ways…blah, blah, blah.”

Mikey's First Year in School Age 3

I’m not sure at what point I became invisible, but he was talking to this student as if he knew what in the hell he was talking about and that I was inconsequential.  Or very dumb.  Did he think I wouldn’t notice he said that Mikey’s diagnosis was wrong?  That what we thought was autism for the past 8 freakin’ years was a matter of a genetic disposition to depression?  Did he expect me to accept that and say nothing?

Apparently he did.  Every time I tried to explain what led to Mikey’s diagnosis, I was cut off by another dumb phone call or a stupid, uninformed asinine opinion of his.  An opinion he formed in a total of 10 minutes with me and my son.

To make matters worse, I was completely blind-sided.  I had no idea that I would be challenged on my son’s diagnosis.  I was completely unprepared for that.  I didn’t bring in the mountains of documentation I’ve accumulated over the past 8 years.  For God’s sake, I could barely form a coherent sentence, between my shock and his dismissal of anything I had to tell him.  I’m not sure when he decided I was an idiot who wasn’t worthy of his attention, or even his comments, but I suspect it was around the time I said I had 5 children.  What intelligent person has 5 children in this day and age?  Everything he said was to his student.  She at least had the decency to look embarrassed about it.

I was trying to collect my thoughts when he started talking meds.  He believed me about the OCD, (“It’s another way depression presents itself.”), and was writing Mikey a prescription.  It was what I went there for and as I was really too angry to speak or even to know what I wanted to say, I took the prescription and ushered Mikey out of there as the benevolent Doc took yet another phone call.

I’ve been thinking about what to do for the last four days.  The meeker and non-confrontational side of me says not to worry about it.  What we wanted was meds for a condition the Doc actually believes Mikey has.  We got it and as the only requirement will be to do periodic med checks, it isn’t necessary for the Doc to agree with the diagnosis of Autism.  The meeker and non-confrontational side of me is an idiot and a coward.

Mikey is not depressed.  He has Autism.  While it is encouraging to think that even a doctor can’t tell by speaking to him, it’s more insulting to be summarily dismissed.  That man has no idea the hard work it’s taken to get Mikey to this point. He wasn’t there for the sensory integration therapy when Mikey would scream his 3-year-old lungs out because he was forced to touch sand or shaving cream.  He wasn’t there when Mikey would stare off into space when I spoke to him.  He didn’t witness the hand-flapping, the echolalia, the made up language.  He certainly wasn’t there when Mikey used to bang his head against the wall or the floor in order to feel something.  That man doesn’t know anything about my son.

He will learn a great deal the next time we meet.  I have videos, reports, test results, IEPs, and a ton of other paperwork.  He may not want to listen to little old me, but he will be forced to look at the history.  He will have to acknowledge the validity of my son’s diagnosis.  He’ll see the tremendous effort put forth by his parents, his teachers, his Occupational and Speech therapists, and above all, of Mikey himself. Of course, I’ll be respectful.  If, as I fear, he still doesn’t want to listen, I can be something else, if necessary.  If you’re not sure what I’m talking about, here’s a hint:  It starts with a “B” and rhymes with “itch.”  While it’s not my nature to resort to this, I am quite capable of it.  Just ask my husband.

Picture Day is Stressful for Autistic Children

If all this fails, we will have to find another doctor.  If there is one.  Because Mikey has a disability, he is on Medicaid.  This was extremely helpful when he was younger and needed the OT and Speech therapy, but it’s not served us as well the last few years.  Finding a doctor, particularly a mental health professional, that accepts Medicaid is difficult.  Of course it is.  With what Medicaid pays, I’d be reluctant to accept it, too.  The wonderful world of government health insurance at work, but that’s a discussion for another day.

Autism Spectrum Disorder is not a cut and dried diagnosis, hence the use of the word, “Spectrum.”  Those on the spectrum have a myriad of easily recognizable symptoms–non-verbal, no eye-contact, no social interaction, sensory integration issues, and stimming.  Some autism cases are very severe and represent what people typically think of when they hear the word “Autistic.”  Mikey presented with all the classic signs of Autism when he began Early Intervention Services.  He began school at age 3 and even attended summer classes so that his therapies could continue.  A lot was required of him and he benefitted from the constant “training.”  I thank God every day for the wonderful doctors and teachers who helped him.  I never thought it might hurt him in the long run.

If this doctor refuses to support the diagnosis of Autism, it will go into his chart and could potentially complicate his future.  Mikey may appear “normal” but he still has issues related to his Autism that will undoubtedly affect his ability to work and live independently.  He will likely depend on his disability benefits.  If Autism is ruled out, these benefits will disappear.  Not because he isn’t Autistic, but because he isn’t Autistic enough.

The ABCs of Autism

Daily Foglifter:  April is Autism Awareness month.

Mikey and Mama

Life with an autistic child is stessful.  It’s difficult.  It’s unfair…..

.

Life with an autistic child is also…

Pure Joy

Awe-Inspiring
Beautiful
  • Crazy
  • Delightful
  • Educational
  • Fantastic
  • Galvanizing
  • Play Ball!

  • Humbling
  • Incredible
  • Jovial
  • Kinder
  • Loopy
  • Mesmerizing
  • Novel
  • Loving the Water

  • Optimistic
  • Philosophic
  • Quixotic
  • Rambunctious
  • Sweet
  • Tenacious
  • Unpredictable
  • Vigorous
  • Wonderful
  • Xenial
  • Yielding
  • Zany
  • …and I wouldn’t trade it for anything.

  • “While we try to teach our children all about life, our children teach us what life is all about.”

    ~Angela Schwindt

  • Autism Resources:

  • http://www.autismspeaks.org/
  • http://www.autism-society.org/
  • http://www.autism.com/
  • http://kidshealth.org/kid/health_problems/brain/autism.html
  • A Child’s Wish

    You can learn a lot from a child’s essay…

    I have a dream that everyone will be happy in this world.  Nobody would have disabilities.  Nobody would have hunger problems.  So nobody would have any problem on the planet.  My true wish would be that this planet would be happy.

    This is an essay written by my son, Mikey.  It’s a lovely sentiment and I’m proud that my son is able to think enough about others to envision such a world.  A funny thing about this essay, though.  That second sentence is not one I would expect to find in an essay by a 10-year-old boy.  Hunger, yes, but disabilities?  Well, my 10-year-old is special.  He knows all about disabilities.  Mikey has autism.

    Mikey was diagnosed with autism when he was three years old.  I had seen the signs–loss of acquired language, a refusal to walk barefoot on carpet, clinging to DVD cases as if his life depended on them, repetitive hand movements.  Oddly enough, the suggestion of autism didn’t come from my pediatrician, it came from a women’s magazine in an article sandwiched between health and beauty tips and 30 recipes for 30-minute dinners.  I remember reading it aloud to my mother-in-law in her car as we were driving down Highway 17 while Mikey stared out the window, laughing at nothing.  I could tell she wasn’t surprised.  She had suspected something was wrong for a while.  Moms are different.  I didn’t want to see it, even though it was painfully obvious.  If I ignored it, it might go away.  That article prompted me to make an appointment with a pediatric neurologist.

    The visit was a nightmare.  I was sitting in a waiting room reading the posters on the wall boasting the creative geniuses that were most likely autistic–Vincent Van Gogh, Ludwig van Beethoven, Wolfgang Amadeus Mozart.  Was this list supposed to make me feel better?  A penniless, insane painter who cut off part of his own ear and died by suicide at age 37?  Two brilliant composers known for their violent mood swings or inability to function like normal people?  Beethoven was an angry, intolerant man who suffered from depression his entire life.  And Mozart was a sickly, dissolute genius who died at the age of 35.  I was not encouraged.

    It got worse when the doctor came in.  The first thing she did was get right in Mikey’s face and try to make him look her in the eye.  Then she handed him this spiky toy that vibrated like crazy and when he immediately dropped it, thrust it into his hands again.  Mikey was in agony.  I told myself that she was trying to get honest reactions out of him.  When she held him tight against her and started rocking him violently back and forth, I felt the hair on the back of my neck rise.  The final straw came when she grabbed him by the ankles and hung him upside down.  He freaked and I jumped up and grabbed him and started rubbing his back with as much pressure as I could muster, as it was one of the few kinds of physical touches he could endure.  At the time, I didn’t know that this was yet another sign of his autism.  It wouldn’t be the long before I realized the “quirks” I noticed in his interactions with people all pointed to the same baffling disorder.

    The doctor didn’t say anything for at least 5 minutes.  She sat scribbling away on Mikey’s chart while I tried to calm him down.  When she finally finished writing, she had the nerve to get in Mikey’s face and say, in a stern voice, “We don’t scream like that.  You have to calm down or I’m going to make you sit at the table I have in the corner over there.”  I was livid.  I didn’t care that it worked and Mikey got very quiet and very still.  All I could think of was his terrified little face while he was hanging upside down.  How dare she reprimand my son when it was her fault he was upset in the first place!  My anger didn’t last long once she started to speak.  I was too shocked.

    She apologized for putting Mikey through the “examination.”  Examination, I thought.  Yeah, right.  Then she explained that normal functioning children enjoy hanging upside down and have no problem holding on to vibrating spiky balls.  It was a baby’s toy, after all, and Mikey is hardly a baby.  I conceded the point, albeit grudgingly.  The she started throwing words around like autism spectrum disorder, sensory processing disorder, echolalia, hyper/hypo-responsiveness, stimming, and idiosyncratic language. Now I was just scared.  By this time, Mikey had made his way to the little table in the corner to look at the DVD case (yet again) that he had brought with him.  I looked at him and he held it up for me to see.  I smiled.  He didn’t.

    When I looked back at the doctor she was headlong into a list of tests that would have to be run on my baby.  EEG, EKG, MRI, CAT scan, Genetic testing (i.e. blood work) and a hearing test (finally one that didn’t involve hooking my baby up to wires and electrodes or poking him with a needle).  The hearing test is mandatory as a lot of symptoms of autism coincide with deafness, but we both knew Mikey could hear just fine.  I would also have to fill out a bunch of questionnaires and see speech and occupational therapists.   Because of his age, he would be getting these services in the public school system, which had a special autism class.  He was barely three, for God’s sake, and he would be going to school.   I was also told to put him on a regimen of high dosage vitamins, including fish oil.  The child already had a particular gift for vomiting if anything remotely displeasing to him got near his lips (another symptom).  The next thing I know, I have a stack of copied handouts, a list of phone numbers, a laundry list of prescriptions, and a piece of paper that said “Autism spectrum disorder” in exactly that color ink, and I’m leading Mikey out the door.

    I strapped him in his car seat and handed him his DVD.  He looked out the window and smiled.  Not at me.  At nothing.  I broke down in tears.

    That was almost 8 years ago.  I don’t think about that day very often because Mikey has done well.  He’s on the high-functioning end of the autism spectrum and early intervention (speech, sensory, and occupational therapy) worked wonders.  Fortunately, in the early years, all the pain and worry about the disorder rests in the hands of the parents.  Small children are more accepting of others and less aware of their own “quirks.”  Unfortunately, it can’t last.

    Now, as Mikey gets older he’s beginning to understand that he’s not like everyone else.  There have been heart-breaking conversations about girls and marriage.  Exclusion from an advanced learning class, not because he wasn’t smart enough, but because he couldn’t pass the “creativity” section.  Apologies for “melting down” when he was eliminated from a spelling bee.  The pain of autism is no longer mine alone.

    And now the essay.  Maybe I’m reading too much into it.  He’s smart and very observant.  Maybe he’s talking about a severely handicapped child he knows in school.  I want that to be true, but all I can think about is Nobody will have disabilities….this planet would be happy.

    A child’s wish. MY child’s wish.

    “If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music he hears, however measured or far away.”   ~Henry David Thoreau 1817-1862

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