P1AutismMom's Autisable

Looking Beyond What Can Be Heard

Wed, 13 Jan 2010 21:14:55 GMT

I wake up to the sounds of Daniel screaming and crying. "owww, oweeee!" I know he isn't happy and is not feeling well but what is the problem? Does it require motrin or a visit to the ER or dentist. Do I go into his room to quite possibly be attacked by a testosterone propelled and distraught teenager or do I wait it out and hope he calms himself a bit, praying that he does not break a window out of pure frustration and misery.

Well of course I go into the room because as a mom you want to fix any and all discomfort your child might be experiencing. He goes to hit me as I back away and firmly I tell him "no!, calm down." "What is the problem?' I don't see any obvious signs of trauma or blood so I surmise that this is an internal problem. He has already visited the bathroom so I didn't presume it to be gas which was always the go-to diagnosis for my mother when she could not figure out what was wrong with her infant grandchildren.

This was my conversation with Dan such as it is: me, "are you sick?" Dan, "Sick!" me, "do you have an owee?" Dan, "owee!!!" me, "where does it hurt?" Dan, "hurt!!!" me, "Do you have a headache?" Dan, "headache!!!" me, "Is it your tummy? Dan, "tummy!!!"

Does anyone else see a pattern here?

So I go to a trick I have used in the past where I apply ambasol to the tip of Dan's index finger hoping he will take the medication to the spot that is hurting. Danny puts his finger in his mouth and gags himself but then brings the finger back up to the tip of his tongue and then his lips. So I can at least narrow it down to one of three areas. I get my flashlight and ask that he say ahhh. He barely opens up but I'm pretty sure I see a little something unusual going on. Time to call the doctor but first I need to supply painkillers so he can get some relief as soon as possible and I can take him in the car without fear of getting into an accident on the way.

Fortunately he eats a plain waffle as if it were a large chocolate chip cookie so I am able to give him ibuprofen without worrying about upsetting his stomach. The doctor is not terribly busy so we get in within the hour. The wait was about 45 minutes but at least he had the windowed room where he could stare out in anticipation of the trolley going by. This was a blessed distraction and the motrin seemed to kick in quite nicely so we are all good in the examining room.

Diagnosis: Coxsackie Virus which basically is a viral illness that has manifested itself as a painful blister on Dan's throat.

I am grateful that so far my little trick with the ambasol has worked out pretty well to date but there is always that nagging fear in the back of my mind that wonders what if some day he has appendicitis or has chronic muscle pain or other issue that gets masked under the behaviors as simply an autism trait. Working with the minimal communication skills Daniel has I can not even imagine what parents of nonverbal children go through. Doctors can be very adept at dismissing behavioral issues as simply that, a behavioral problem. Next thing you know you are leaving the office with a prescription for a neuroplectic or benzodiazepine drug which certainly will sedate your kid into submission but fails to address the possibly serious issue causing the behavior.

Dan was able to say "owee" but what if he had just been crying, hitting, scratching and banging his head against the wall. Then what? What if he were completely nonverbal like so many of the kids I see in the severely disabled category around schools and regional centers.

I pray for these children and their families on a daily basis but I also pray for their physicians, teachers and caregivers that they will be given the wisdom to hear outside the noise and have the willingness to look beyond the broken window or the bruise on their own arm to see what quite possibly is a much deeper issue. Think outside of themselves what might it feel like to be in their shoes or worse in their wheelchair. What does it feel like to be restrained by means of straps, a "time out" room or medication. Do we not heed their cries simply because the sound does not come from their lips?

What lengths would you go to to make yourself heard if you did not have a voice?

I'm Not Insane, Just Tired

Mon, 11 Jan 2010 22:46:17 GMT

A few days after new years I could not sleep and started to fixate on the barking dog up the block. In the past the neighbors have allowed their german shepherd to stay outside all through the night while he barks at every living nocturnal creature in the neighborhood. My husband has politely asked that they house their animal within their home or at least keep him in the garage so he is not heard at all hours. Funny thing is that you never hear “Puppy” during the day which would lead me to believe that he is either sleeping during daylight hours or the owners are home and allow him indoors while they are awake. Either way they are the only neighbors who are rude and inconsiderate of others while they sleep soundly with their newly installed triple pane windows blocking out the annoying rhythmic sounds the rest of us are forced to endure.

The more I listened the angrier I became, especially since we had tried the polite route and later the more covert entry into the mailbox hoping they would believe that other neighbors were complaining. I had asked one of these other victims if they had heard the same barking night after night and they said yes but offered that they did not want to make waves and therefore just put up with it. Mind you their daughter is the one who puts up with it as her bedroom window directly faces the neighbors balcony where the dog typically roams. She has even expressed to me that she is woken up several times during the night.

As I lie there awake for 3 hours I remembered that when we moved in 13 years ago there was a block party where a list of all the phone numbers and addresses of the immediate area where provided. I dug through the cluttered catch-all drawer in the kitchen and found the list. This is one time I did not mind that my husband saves literally everything written down on a piece of paper.

I proceeded to call the number and when I was finally greeted by a groggy sounding “hello” I replied, “bark, bark, bark bark bark bark” then hung up.

Haven’t heard a peep out of pup since but I have their number on speed dial just in case..

How I Was Introduced to Xanga / Autisable

Mon, 11 Jan 2010 17:06:52 GMT

I've been going back and forth on yet another blog post on autisable in the comments section. It brought up again the whole issue of High Functioning Autism (HFA) vs Low Functioning Autism (LFA) which is a ridiculous concept however due to a few "extremists" for lack of a better term it has reared it's ugly head again. Well, this was my last reply to the post and will be the final time addressing this issue unless I am personally attacked yet again by what I believe to be quite the opposite of an accepting and diverse group of individuals.

_______________________________________________

This was how I was introduced to the concept of "neurodiversity":

I merely "tweeted" I can not wait to see Daniel in his new and perfect body in the arms of Jesus. In my faith I believe that we are resurrected after Christ's second coming to be in heaven in perfect new bodies. Simply I will no longer have migraines or arthritis, my brother will no longer be diabetic and Danny will no longer have to struggle to communicate, suffer from anxiety, overstimulation, etc, etc. Next thing I know my statement is re-tweeted and condemned as hate speech. I am accused of hating my child and believing that God values autistic children less than others. It was the most hurtful and unbelievably disgusting thing I had ever experienced from within the autism community.

For the record my children are the loves of my life. I love Daniel no more or no less than my son Brian who by all accounts and evaluation is a typically developing individual. Do I wish Daniel was cured. Hell Yes!!! In my mind a cure does not change who he is as my son, it does not have to be the end of his talented self, his funny self, his lovely and beautiful self just as muscular dystrophy or cancer would not change who he is if God forbid in the future he was diagnosed with either of these illnesses.

I would never have heard of neurodiversity or HFA vs LFA as a debate had I not been personally attacked for a simple and what I believed to be an innocuous statement proclaimed on a social networking site. So who is picking on whom?

_______________________________________

Because the post from my accuser was re-tweeted by several autism sights as "@p1autismmom why do you think that God values autistic people less than typical ones?" which by the way was not what I said , I contacted the sites individually to ask them why they would re-tweet such wording with such a false inference without checking to see if such a statement was ever made. Every site replied that they were on an automated re-tweet system and that every time the word #autism was used the entry was re-tweeted. I was further told that there was no way they could go back and read through all of their re-tweets so they could not address this particular issue directly but would try to do better in the future. So the explanation of low staffing and automation was what I was provided with as an excuse for pure laziness and the position of no accountability.

Joel at autisable did make an effort to find the re-tweet but was unsuccessful. He told me that he had checked my web page and liked my blog and would like to know if he could use some of my posts for his page to which I obviously agreed.

So there is the story of how I ended up here posting on all of your comment sections.

P.S. I love the fact that when I spell checked this text I had the opportunity to hit the ignore key when the word neurodiversity came up. I am certain it was a divinely inspired directive

It's Winter Time Again In San Diego

Thu, 03 Dec 2009 18:25:09 GMT

Winter conjures up all kinds of warm and fuzzy seasonal images complete with a wardrobe change filled with cozy sweaters, fur lined jackets and suede boots. Well, in autism land these changes are not likely to take place and especially such drastic ones that require the tolerance of offending textiles.

We live in San Diego County which for most of the year we have an average temperature of 72 degrees fahrenheit. We see very little rain, no snow below the 4000 foot level and the closest thing you will see that resembles a white Christmas at our house is the frost on the northern facing side of the rooftop in the very early hours of the day.

So why is it every winter I have to explain to Daniel's teacher why he is not wearing a jacket or pants, much less closed toed shoes. I realize that you are a very healthy anorexic weight of 95 lbs soak and wet and require thermal undergarments to survive temps below 80 but my boy here is OK and quite comfortable in his shorts, t-shirt and well worn sandals.

I know you are concerned for his health and safety but I seriously doubt that Daniel will develop hypothermia on the 15 second trip from our temperature controlled house to the temperature controlled car nor will he become a human popsicle as he exit’s the car and makes his way to the 84 degree sauna you call a classroom.

Yet in years past I have had to explain the same thing over and over and over again. Danny is not comfortable in long sleeves or pants. The fabric brushing up against his hairy arms and legs is like the prickly feeling you have when you try on a wool turtleneck sweater. It's not going to happen and believe me he will once again survive the winter just fine.

One year the teacher was determined to prove me wrong. Daniel would tolerate pants!! In her eyes I was being neglectful bordering on abusive not bundling him up appropriately. I came to retrieve him at school after the day was done to find Daniel wearing a pair of the teachers' own son's sweat pants. He had obviously been crying and was in distress. He ran up to me and immediately yelled, "Take Off!!" The teacher proudly came over to us to announce that this was the first time Daniel had said those words the entire day and he must just be doing it now because he knows how permissive I am. Huh? She then went on to tell me that he had started a new obsession with pulling his shoes off so maybe we needed to look into a new pair because these were probably uncomfortable for him. HUH? So now she's worried about his comfort.

What I wanted to say was "hey, genius!, the reason he was taking off his shoes is because he knew that the elastic band at the ankle of the sweat pants you forced him to wear would not be able to come off over the shoes." "He was taking the shoes off so he could get the stupid pants off, you condescending idiot!!!"

What I did say while nearly putting a hole through my tongue was, "He may have been trying to get the shoes off so that he could remove the pants because he's not used to the feel of them. They look great! Too bad we WON’T be seeing him in them again."

Each subsequent year we went through the same nonsense, some teachers took it better than others but no one really understood.. Why was it my job to explain sensory issues to an "Autism Teacher" with a masters in special education?

The last year we went through this I was fully prepared to go through the whole frustrating and ridiculous discussion again. "Danny, blah blah blah blah, sensory, blah blah blah autism, blah blah blah" The first chilly day I brought Dan up to the grouping of kids waiting for the last bus to arrive and the teacher looked at me with her smug all knowing attitude, "Aww, poor Danny looks so cold, do you have any pants we could put him in?" I said, "Sure, I’ll bring them tomorrow so if you insist on him being warm while he beats the crap out of you, be my guest"

Maybe that will get put in the notes for his next teacher to read.

Liar Liar

Thu, 03 Dec 2009 02:49:41 GMT

In the movie Liar Liar starring Jim Carrey there is a scene where after the spell is placed upon him for one day not to be able to tell a lie, he has a rather uncomfortable exchange on the phone with his mother where he tells her that he avoids her calls because she insist on talking about his father’s bowel movements, size, shape, frequency, etc.. I can watch this movie over and over again just because of scenes like this where the truth must be told regardless of how uncomfortable, politically incorrect or harsh the testimonials.

In our society part of the reasoning behind lying and political correctness is to avoid confrontation thus ignoring our responsibility to be concerned citizens because if you keep your mouth shut or say only what you presume to be acceptable you are generally able to keep the peace and are never forced to get involved.

But What If? What might happen in that 24 hour period and then subsequently if only the truth be told?

I imagine that some relationships would be irreparably damaged but then again others in distress could perhaps be healed. There would most certainly be those in powerful positions exposed for their corrupt deeds but then maybe we would realize that others do have honest intentions. We may discover that abuses are happening against friends and neighbors but then maybe some of us would finally step up to speak out in their defense.

What an interesting world this would be if for one day we stated with candor what was on our minds, were forced to answer a pointed question truthfully or genuinely expressed what was in our hearts. hmm

The Ability Within the Disability

Sun, 29 Nov 2009 16:24:25 GMT

Daniel has always shown evidence of a photographic memory. It started very early at around 2-1/2 years old. Before he could speak he would use magnetic letters on the floor to spell out words he had seen in his environment. It got to a point where I was buying buckets of these plastic letters to keep up with the demand for his expanding repertoire of billboard style creations.

The cool thing is that because he had the ability to take snapshots in his head of pictures and words I could pair the two together on cards as a way to communicate with him and he with me. The words would have little to no meaning if there were not visuals to give them one so pictures were imperative..

I bought a digital camera and took pictures of the foods he liked and typed the word below the picture. Then I laminated the pictures and applied velcro to the back to attach them to the refrigerator. If Daniel wanted a preferred food I would hand him the card and physically prompt his hand to give me the card while immediately rewarding the exchange with the desired food. He caught on right away so I continued to take pictures of all of his toys and placed them out of his reach so that he would have to communicate with me to get what he wanted or needed.

Since those early days we have been able to simply write simple sentences on a dry erase board if we need to convey a message and he is not able to take in audible communications for whatever reason. I would love to see him do the same someday by writing his own thoughts down or typing on a computer but to date he has yet to show us he has any desire to do so although we know he can use a keyboard and write legibly.

LOGOS He watches the beginning and end credits on DVD's and then draws the logo from memory.

I think he googled "Bridges" at school.

I love that his Occupational Therapist for years tried to get Daniel to grasp his writing instruments in the "proper" manner. It does not seem to have hindered his ability.

Today I look at his capability to take these mind snapshots and recreate images in his drawing as a possible way for him to evolve this skill into a career. If not his own original artwork on canvas maybe painting window displays for Christmas or for that Going Out of Business Sale. At this stage of the game he wants to draw what he wants to draw and would not take direction very well. That is a "skill" we may have to work on. :)

A Holiday Minus The Gathering

Fri, 27 Nov 2009 19:08:56 GMT

This will be year number 4 that we've spent Thanksgiving at home instead of taking the 20 minute drive to my sister's house where all the sibs, their spouses and children gather for a potluck style feast.

Easter 2004 was the first holiday that Daniel vehemently protested entering the crowded dwelling with all the insulting sights, sounds, smells and loud squeals from the ever expanding crowd of toddlers. We managed to work him into the backyard through the side gate but this unusual direction would start off the day with less than a joyous tone. By Thanksgiving that same year it would become evident that we were embarking upon a new phase in the world of autism. It was Daniel's world and we had just become the unwitting co-inhabitants within.

The years before Daniel had tolerated the noise and unpredictable environment largely because he knew there was a massive shelf with every toy imaginable contained inside.. If there had been a huge giraffe greeting us at the door we could have sworn we were at Toys R Us. The child indulgent atmosphere was quite enticing for a 5 year old, 6 year old, 7 year old and 8 year old but finally it's power and the magical spell it placed upon him to endure the unbearable was gone.

That following Thanksgiving my husband chose to go alone and although I said "sure, this will save me the trouble of cooking" I was completely annoyed that I was left behind once again to be the caretaker while the more normal activities would be enjoyed by my spouse. It had happened before and always with my blessing. Our first and only airplane ride where I sat in the back of the plane watching Brian looking out the window in aw 8 rows ahead. There I was wrestling with our screaming toddler to keep him in the seat while the stewardess yells at me during the ascent to buckle him in. Then there was the trip to Disneyland where I spent hours in the hotel watching Daniel jump up and down on the bed while Brian explored the wonders of the Magic Kingdom with his father. I placed myself in the autism world with Daniel while my husband enjoyed these huge firsts with Brian. It was my choice and while I thought I was ok with it, the bitter taste it left buried beneath the surface would soon become known..

We started switching off with each passing event, one of us would attend the festivities with Brian while the other stayed home with Daniel and we would never again attend anything as a family but this did not feel right no matter what position you were in on that particular day. Competent and reliable respite services seemed to be in short supply and especially during the holidays plus I had never felt comfortable allowing Daniel to be the outsider in family traditions anyway so we may have just spawned our own tradition of being on the outside.

So for now family get-togethers have for better or worse become a thing of the past. Even weddings and funerals fall into the category of events we may have to skip out on.. To date we see no remedy for this situation , yet as surely as this turned into our new norm, I wouldn’t be surprised if a change was in store for us in the near future.

The Choice

Mon, 23 Nov 2009 23:10:45 GMT

I will preface this by stating plainly and clearly that I am Pro-Life or you may choose to call me Anti-Choice as this label will brand me as the antagonists thus making it easier to disregard anything I have to say. I just thought I’d put a little different spin on how I see the ability to bear a child as a gift not to be taken for granted just because the law allows the right of choice.

The entitlement of women who get to make all the choices regarding childbirth are due to circumstances surrounding reproduction. What are these circumstances?

Human Gestation Takes 9 Months We as women have the benefit of deciding to end a pregnancy for the simple fact that the human gestation cycle typically requires 9 months and not just the 24 hours it takes for the common house fly.

Our Incubator Status Biology dictates that the woman house the developing baby so in our natural role we have the power to deny the equally important contributor to the process his position as a parent and yet we can demand that this same source pay child support should we decide otherwise.

Mathematics A woman is born with, yes born with approximately - 1 to 2 million immature eggs and will ovulate approximately 400 times in her life

Freedom of Speech Of course this is more about perception but we do get to decide when to declare the life within our womb just a mass of cells, but can later refer to that same and equally developed mass of cells as "the baby" while proudly patting our expanding bellies.

Would we reconsider our position if the circumstances were different?

Say men carried the baby and could tell you, "sorry, I'm just not ready to have a baby" or "I’m having this baby whether you want it or not and my lawyer will contact you to arrange monthly support payments."

What if you were not allowed to call the life growing inside you "the baby" until it was capable of living outside your body. That might make the 4th and 5th month milestones a little less exciting wearing your maternity t-shirt with the words "Fetus on Board"

Would you be a little more inclined to use sound birth control methods or dare I say practice abstinence if only 24 hours later you could be lying in a maternity ward, screaming for an epidural, And what if you only had 20 eggs and never knew when or if you would be able to conceive again?

We as women are given a profound and wonderful gift, to carry life inside of us, to enjoy the months before we meet our baby while we make the announcement to family and friends, plan a beautiful nursery and celebrate our expanding belly through all of it’s stages. We should not take for granted these extraordinary set of circumstances and should treat them as a privilege rather than an endless resource to tap into solely because we have been given the right to choose. 　

I've Been Vindicated ~ Eggo Shortage

Wed, 18 Nov 2009 21:02:22 GMT

Sunday nights I usually come home from the grocery store with all the essentials ready for the week’s consumption. Well, this week we were minus one item. Eggo Frozen Waffles. I figured I would take this opportunity to buy the healthier brand because in our house, it’s not really about the waffles, or so I thought..

Every morning I watch my son carefully fill each individual square with a puddle of syrup never missing one cube shaped hole. Well so far this week things have been a little different.

Monday morning: "Where are the Eggo’s?" "Well the store was out of them last night so I got you these but I will go back and try again today. I’m sure they will have restocked more by then"

Tuesday morning: "Where are the Eggos?" "I’m sorry Brian, once again, they did not have them. I don’t understand because they are not even on sale this week"

Wednesday morning: "What? No Eggos’s" "Seriously, I tried Ralphs and they too were out of them."”

Now I am starting to look like I have either lost my ability to navigate the freezer section or I am secretly trying to insert more fiber into my teenagers diet.

Ah Ha!!!, There it is, I am not conspiring to improve anyone’s diet, So There. Wait, that did not sound right. Anyway, I can prove now that I wasn't deliberately bypassing your preference.

"Kellogg is rationing its Eggo products due to flooding and equipment problems at two bakeries. The shortfall could last through mid-2010"

http://finance.yahoo.com/family-home/article/108191/leggo-your-eggo-theres-a-waffle-shortage

No Words Necessary

Mon, 16 Nov 2009 18:19:20 GMT

Last night while I was getting Daniel ready for bed we had gone into his room where I would normally tuck him in and give him a kiss on the forehead and say something like "see you in the morning Danny Boy". I have all kinds of pet names for the Dan-o-man. Ha Before he plopped himself onto the bed he was fiddling a bit with his hands and softly whispered, "I Love You" I was taken aback but appropriately said, "I love you too" and gave him a huge hug. I did not want Daniel to associate that phrase with watching his mother have a meltdown so I held it together until I left the room at which time I promptly turned into a emotional mess of tears.

I don’t say the words "I Love You" on a daily basis but I do say them spontaneously at least a few times a week, never at the same time, just to keep them guessing. The words were rarely spoken in my childhood although I felt Loved and Cared for every day it was just not something my parents did. It may have been their upbringing, I don’t know for sure but when they did use those 3 little words it was quite powerful.

I have always had a connection with Daniel but will admit it is different than with Brian simply because I can have a conversation with one and not the other. There is something to be said for verbal communication but when it comes to emotion, words are not always necessary and actions speak volumes.. I have nothing against the practice of injecting "I love You" into every greeting. every goodbye and every good-night kiss but I’ve always felt a little weird with Daniel because he has a speech characteristic called echolalia which is basically a repeating of what he has just heard be it a commercial on TV or a shout from across the classroom. I could pretty much say anything to him and have it echoed back to me. I even asked that a teacher not insist that Daniel say "I Love You Mom" before I left the building because it was not him speaking but rather a prompted utterance. much like the insincere "Sorry" you hear from a child who has just been told sternly to "say you’re sorry!" by an adult.

To hear a rote response fashioned from training on niceties such as saying, "please" and "thank you" are ok with me but as for expressing emotion, thought or feeling it just doesn’t seem right to put words into someone"s head producing such a rote response so it has never been written as a goal in Danny’s IEP and has even been discouraged more informally.

If I had not been so cautious on the issue of production of words to proclaim ones true emotions or thoughts would hearing the words "I Love You" have meant any less coming from Daniel 5 years earlier? I don’t know that I can say for sure, but what I can tell you is. it was worth the wait.