Realizations About the ‘Why Me’ Syndrome (AKA: Killing Bad Thoughts)

It was the beginning of June.  Here in my neck of the woods, the leaves were just beginning to explode in full green-gloss.  The sun did shine.  My first semester of school was over and the grades posted so that I could pat myself on the back a little. The semester had been difficult, it had been 15 years since HS and my first time in college. We were also dealing with the initial evaluations on Emma, the possible need for speech therapy, investigating referrals for service.  And we received the first main batch of tests back for Emma.

PDD-NOS?  A disability? Therapy? Developmental? I felt myself moving a bit towards the mental range… among all of the thoughts that cut, fester and circulate during times like this, it was one of the selfish-selfish ones that provoked the most tears.  It was a self-centered, self-loathing, and obnoxiously whiny.  It wasn’t just “WHY ME????”  It was “Why me?  I ALREADY DID the whole “I have a challenged child”.  I was SUPPOSED to get to enjoy having a normal parenthood.  I was SUPPOSED to have a non-special-needs child.  THIS CAN’T BE HAPPENING!” (for those of you that have a disorder or etc, please don’t take this wrong… it’s just that as a parent I was feeling selfish and a loss of my certainty of the future.)

There are all sorts of mental frames we can put our mind and hearts in, and I’ve been racing through them as fast as possible.  I realize that I can have greater understanding for others through this.  And expand my self and knowledge.  And perhaps gain clarification for my future career, with a certain new passion for helping others.  There is a world out there that I was mostly unaware and ignorant of, and I want to not only get over it – I want to feel blessed by it.

But I have to admit that almost 6 months later, that original horrible thought pattern still comes around every once in a while. Until.  Yesterday.

There was bad-thought-blood and triumph all over the shower, I think I killed it…

It began as a spark of ‘what if’.  Which led to the realization that my son’s (now seemingly minor) issues really were just a precursor.  A break-in. A method of adjusting my parenting and self to what was coming my way. Not everyone gets that, you know.  I have qualities that my friends and family could say are good, but I have to admit that before I had my son I was very impatient and somewhat self-centered. R. is truly an amazing kid, as he made it through my struggle as a young un-married mother. And helped me come out of it a much better person, and certainly 1,000,000 times more fit a mother for a delicate and challenged girl like Emma.

I’m ready to take on the world.  I rally for therapy and support in a very unsupportive environment (speaking of location in the state, etc.).  I am an old pro with the IEP, and schools, and teachers, and all the misc. crap in between. I am as patient with her as I think a person could get, and I have to put so many of her needs before my own.

In essence, I guess Emma should be thanking R. too.

How many parents get a test-run first?

Am I a Horrible Mother?

Okay – so I’m frustrated.  As I’m gathering information for my presentation on ASD for my psych. class I keep running across the same stuff.

It’s the same old thing, where these parents saw these AMAZING results from their treatment plans instigated on their ASD children. I’m not talking the hour and 1/2 a week that Emma gets of therapy, I’m talking about the parents that give their children 40 HOURS A WEEK of ABA or whatever else therapies.  Apparently their children have hardly any autistic characteristics now at all, and you just wouldn’t believe it’s the same child.

What I’m having a really hard time with is the fact that I CAN’T DO THAT.  I could quit school,  default my student loans, and my husband and I declare bankruptcy (because my loans are helping to keep us afloat), and then give 40 hours a week to her therapy and care.  ????

What is going on here?  Is that the only way?  Am I facing a more impaired-future for my daughter because of my inability to offer her that?  Don’t some children turn out the same amount of better WITHOUT that kind of committment?

It’s a horrible self-induced guilt trip that makes me so angry…

And perhaps a little bit jealous.

Some people can do that for their kids, I guess, and some people have the time and funds to make it happen. It’s such a conflicting bag of emotions. Am I doing the wrong thing by not forfeiting my life to try this approach??? It may be easy for you people not raising a DD child to exclaim, “OMG, of course you shouldn’t do that!”  But listen, when you are in this position, you feel that the entire world of your child’s life is resting on these decisions.  Perhaps her future to attend school successfully, to have friends, to marry, to live on her own, to have a job.  Those variables are completely unknown at this point.  Wouldn’t you try? Or at least beat yourself up a little for not being able to?

A Holiday Done, Gone, Finished

Well here I am, sitting at the dining room table on a Friday night. The kitchen is kind-of cleaned, Emma is sleeping, R. has a friend over and they’re gaming-out upstairs, Bob is watching a Letterman re-run, and friends, it’s COLD outside!

Being that this is a blog about my autistic daughter, I’m sure that you are wondering when I’ll tell you the juicy tidbits about having a DD (developmentally disabled) toddler during mass-insanity.  First, a little soapboxing: I don’t care anymore whether it’s my “autistic daughter” or “daughter with autism”.  The whole people-first-speech thing really gets in the way of my brain flow.  OF COURSE it’s my daughter first and her DSM-IV lable second. Give me a break.  We’re nearing the second decade of the 21st century… honestly: autistic kids, or kids with autism; people that fear the disability will put their emotional impact on the autistic part no matter WHERE you put it in the sentence.

There.  Phew.  Thanks for lasting through that little rant, and now we’re on to the holiday…

Emma was in fine spirits.  The excitement of the fresh, new meat to charm-to-death was nearly intoxicating. She was a butterfly on crack, and we all had a blast. The crescendo of the holiday week came on Thanksgiving day.  I had been up past 3am the night before cooking apple pies, fresh rolls, and shelling those $#%^@* chestnuts for my dear husband’s only TDay wish (chestnut stuffing).  That morning we were both tired and I foolishly told him that he could slip back to bed for a little bit. Somewhere around then is when hell started blowing, gently at first, and rising to some sort of full-gale around noon.  Emma was a crying, head-banging, attention-needing, stubborn, dish-washing toddler. I was a solitary woman attempting to prepare a large thanksgiving dinner all on her own.  It was a BAD, BAD combination.  Somewhere along this path I managed to royally twerk a few of my relatives off, hence destroying the mood of the holiday for everyone.  Ugh. It’s so hard to remain perfectly pleasant after struggling through the hours before.

Emma was wound very tight, no nap and picking up on the local tension.  She refused to eat anything we put before her, and went on to scream hysterically (while we were sitting down trying to eat) because she wanted the pretty dress off, and the swimsuit she’d found ON. (I hide all the fairy dresses and swimsuits, and thought I’d thrown this one away. I have NO idea where she found it!)  For the peace of mind of my guests, I finally just gave in.  The size 18 months (she’s in size 4T) Dora swimsuit was donned.  It dug in her flesh and barely covered her nipples, but it made her momentarily happy.  We rejoined the dinner table. About 4 minutes later Emma wanted to sit on my lap.  About 2 minutes later she wanted to sit on my dinner plate.  (No, I’m not joking.) She wanted to sit on the table, plate or no plate, potatoes or no potatoes.  She was screaming, I was holding her up a bit to prevent the mis-hap.  Her swimsuited butt was pointed out at the entire lineup of guests across from us at the table, dangling dangerously toward my chestnut stuffing.  I was a little red from embarrassment but couldn’t help giggling; the struggle went on and on as I attempted to convince her that she really should sit on my lap.  This was all just a little bit too much;  there was no negotiating or distracting. Finally I stood up and we struggled more as she turned into jelly girl, attempting to slip down through my arms like a puddle to the floor. 

Emma went to bed and screamed while we finished our meal.

There were lots of dishes, leftovers, and still-strange currents from my early frustration.  On a good note, later in the evening with Emma in bed, my dear husband and I had a heart to heart about family and ourselves, and how perspective helps in dealing with both.  It was one of those times that left me feeling very close to him, a feeling that hasn’t been around very much lately.  It was a beautiful end to an interesting day.

giving thanks

I am thankful that today, 2 out of 3 car-seat entries were without incident.

I am thankful for my wonderful, beautiful, amazing, loving, and hysterical family (close, closer, and extended).

I am thankful for Emma’s dedicated and caring therapists.

I am thankful for small things that save my ass, like fruit-roll-ups, tic-tacs, baby lotion and the alphabet song.

I am thankful that I get to go to school, that Emma has a wonderful place to be while I’m in school, and that we have a safe car to get to and from.

I am thankful that my brain HASN’T actually turned into green slime and run out my ears.

I am thankful that I will never run out of challenges, and therefore, never become bored with my life.  🙂

What are your Autistic Characteristics?

It’s generally well accepted that a person can have certain autistic characteristics without being defined as having the disorder.  In fact, Hans Asperger indicated that he saw autistic traits in all the parents of the autistic children he had been able to meet.  (Asperger, H. [1944] ‘Autistic psychopathy in childhood.’). 

In light of predisposition, it’s interesting to look at some of my own lifelong idiosyncracies. For example, I have some real sensory-sensitivities regarding some noises, smells, my skin, and touch.  The mention of the words (and the slightest thought) of fingernails on chalkboard makes my hairs stand on end.  In fact, the chalkboard itself makes my skin crawl, and the feeling of chalk on my fingers is just HORRIBLE.  I can’t stand that dry-skin-chalky-dusty-anything like that feeling.  I hate micro-fiber towels. I can’t stand using certain types of baby-wipes (the dryish feeling ones that don’t pop-up) that I have to grasp.  It’s a feeling that resembles a scream, or raw nerves, or an invisble cold fire.  The sound of dry-ish markers on paper, or markers squeeking on a white board makes me feel the same way. It’s so RAW, it makes me feel like my blood is drying up in my veins.

I like to think that these insignificant (when compared to a disorder) irritations help me to understand Emma better when she’s “Having a Preference” (doesn’t that sound nice?).  I can work on helping her from a better mental stance. When I can personally relate to something, my capacity for patience, coping, and stamina increases drastically.  It’s a small insight into a part of their world.  What say you?

Sunday Morning

When allowed to wake up on her own schedule, Emma springs to consciousness like a rainbow.  She is sweet and warm, cuddly with her arms around my neck like a baby koala bear.  Her breathy-voice smiles as she talks about daddy going potty, mommy going potty, doggy going potty.  She is calm and spirited at the same time, these types of mornings.

Today Bob got up first and took her out of bed while I laid under the blankets.  I didn’t go back to sleep, I like to lounge in bed.  That is.  Until some of the repetitive thoughts come tossing through.  This morning I couldn’t stop thinking about a recent phone conversation.  A dear friend of mine called me the other night in true terror, “Daleth – I just HAD to call you, Have you ever given Emma an immunization?!?  I just heard all of these horrible things about them, they CAUSE autism!!!”.  She is childless and sweet and sometimes naive, and I tried to breathe through a 10-minute vocal exercise about what I think is going on with all this vaccination stuff.  (If you disagree with me on this, please just keep your comments to yourself this time, I beg you please.)

When I hung up I felt the weight of the world on my back, and I knew she would never be convinced that I had not GIVEN my daughter autism.

I have to let it go, I know, but the little parts of information that I have, and the arguments I have found within myself keep cycling around and around.  I wish I could make her understand what I feel and have found, and through that, I wish I could make the world understand what I feel and have found.

It seems like there are so many witchhunts in our society.  I guess it’s just something to keep me humble; to remind me to be wary of my own preconceptions I might have towards other people and their life’s challenges.

My Ears Hurt Often

Today was okay.  I took Emma to school in her snowsuit again, it was a peaceful transaction (as far as clothing is concerned).  I picked her up fully dressed…  Those daycare workers are not being paid enough money, really.

The ride home was somewhat deafening, as usual.  I wonder what the statistics are of early-onset of deafness in parents of special-needs children.  (Probably abnormally high)  There is little communication about what she needs, or dropped, or wants, or sees, or feels.  It’s just an ear splitting howling scream that can easily turn into animalistic wailing at 190 db if not addressed properly.         I try to be a good driver, but I also try to preserve the health of my auditory system.  I’m driving down the highway a bit frantic, one hand on the steering wheel as I quickly cycle through the usual suspects, “Do you need your Juice? (hand juice back)  Do you want your dolly?  (rummage for doll, throw on her lap) Did your baby drop? (blindly flail around for baby)  Do you want a book? (where are those dang books? flail around under pile of toys for books) Are you hungry? (try to open fruit roll-up with teeth while driving)  Do you want your socks off? (peel off socks and shoes)  Do you want your blanket? (throw blanket over backwards on her head)  Did you drop a fruit snack? (sigh and hold finger over right hand ear hole to help with noise)  (repeat as needed).

Emma was happy to be home early today.  She also decided that there was no napping today.  That’s too bad, because I was very tired.  She was up several times last night, one session lasting nearly an hour.  Anyway, we did some art, and she helped do some laundry.  She watched Dora.  I daydreamed of napping.  On a good note, she’s been a little more talkative the last few evenings.  Last night she said to Rylei as he walked through the room, “Where you going Rylei?” in her little voice.  THAT was big news, she’s never said or interacted like that before.  She’s also starting to get very excited when Daddy comes home, which is so cute.  I think it makes Bob’s day to come through the door and hear “Daddy home!!! Daddy home!!!”.  She is still abnormally attached to me in the house, but, I think this is a small step towards some future independance.

I made sure I brought the snowsuit home.  I’m wondering if she’ll be sitting at Thanksgiving dinner next week in it, big, fluffy, and purple. >grin<