Were You Traumatized by the Autism Diagnosis?

I am wondering how traumatizing an autism diagnosis is to a parent and how it affects how we parent in the future. It undoubtably changes how we consciously see the world, but is there a lasting subconscious effect?

I find myself having flashbacks to the day of diagnosis. The day on which everything changed. Even when faced with what someone might say is a normal parenting bump, I feel a certain sense of panic: "oh my god...is everything going to change?" Is our future going to once again be uncontrollably altered?

My 7 year old daughter has been complaining about trouble with some friends. This is something that immediately sends me into panic mode. Did we miss something, is she going to have the same troubles as Will? Is she destined for loneliness and heartbreak? Or anytime that they are struggling with something academically. Is it Autism's Cousin "ADD" knocking at the door?

You think that the diagnosis would helpus learn to roll withthe punches rather than fear the worst. I think consciously I try to live the former, but too often the latter sneaks in. Have I been traumatized to the point that I do not trust happiness?

How have you coped with the trauma of diagnosis?

School Field Trip

I had the opportunity to attend a third grade field trip with Will yesterday. We went to Orchestra Hall for a concert put to the book the "Tin Forest." The orchestra played, while the Mayor of Minneapolis read the story. I knew this would be a challenge for Will, which was part of the reason I signed up as a chaperon. I did my research before and put together the following social story. I knew Will was mostly concerned about the lights going off and loud speaker music, so I tried to incorporate this into the story.

Will did good! He entered the concert hall, with peeking curiosity. His heart was racing, on the cusp of panic, but he still had a frame of reference. When the music started he stated over and over: "no lights out, no lights out" but there were no shouts of terror. His talking blended in with the hall full of chatty third graders. The only looks he got were the envious eyes of the kids around him who saw that he was using my iPhone to take a video of all the stage lighting. He clapped, pretended to conduct, and watched the orchestra. He even anticipated the loud percussion parts, and covered his ears appropriately. His anxiety climbed as the various music pieces came to an end, but I was able to coach him by pointing out the "happy--not scared" children around him. Since I did make a "30 minute only" deal with him, we left early on a good note.

SO....now for the not so good part. We get back on the bus, and I sit with the rest of the Autism Class, and the teacher/aides could not stop complaining. It was hard, I admit, but not impossible. The teacher out right stated: "I don't know why we go to these things, none of them liked it." I was crushed. Here I had a wonderfully successful (albeit not perfect) trip with my son and I was bombarded by negativity and hopelessness. In my mind it was a perfect opportunity to work with the children: read the story before hand, write social stories for them, listen to the music and practice clapping, teach them about the instruments, peak their interest before hand, so that they can participate. This is the effort I need from the school that I am not getting. I totally feel that "accommodations" are now synonymous with "exceptions and exclusions" not with "added support". After this experience, I am one step closer to homeschooling him.

And...because I want to leave this post with a positive tone, I also want to say that I am considering homeschooling, not only because the public schools are inadequate for Will, but also because I had a blast with Will. I think that with one on one, loving, positive direction he could make huge gains.

A Pilgramage to the Autism Gurus

As much as I try to not get swept away by anyone thing or person selling promises of an Autism Elixir, I did travel way outside my comfort zone, exactly 1900 miles out of my comfort zone, in search of some answers. We decided to spend our summer vacation, driving cross country to Portland Oregon, where we stayed at a place offering a "family immersion experience." Here the whole family can be involved in working through various goals related to autism. We stayed at a little house and received 5 hours of "coaching" each day. We agreed to give up TV, iPads, games, music, and every other form of family "life support."

Although they did not come without recommendation, I was totally going against my gut, packing up 4 young kids, autism, food allergies, asthma and all, to do something completely new and unconventional. There were many a night prior to the trip, where I would wake up panicking, questioning my sanity. I felt that from the outside, it looked as though I was crazily devout, about to embark on a risky pilgrimage to an unknown land where we would encounter our Guru who would hopefully provide the answers to our unanswerable questions.

I alleviated my diagnosable phobia of being swept away into a cult, by declaring that the journey was to be equally as significant as the destination. It was a chance for my children (and husband) to crack through the crust of the predictable Midwest and see the landscape"beyond"

"Beyond" took us first through Badlands National Park, SD. This was a favorite for the kids. They loved "climbing the earth" troubled slightly with the fear of Rattlesnakes. Will was so calm sitting in the warmth of the dry earth, crumbling dirt between his fingers. With a storm, came the mud, and we were on our way.

Gardiner Montana was our second stop. It was just outside of Yellowstone and away from the tourism! The older kids went horseback riding in the mountains, It is amazing to see Will on a horse. His body relaxes and his overactive neurology vanishes. The staff were so accommodating to him-- which supports my impression that people from Montana are awesome! We traveled into Mammoth Springs, in Yellowstone, that afternoon. Fun for the adults, trying (& crying) for the kids.

We ventured slightly west to Butte, Montana, to the kid focused part of the trip. A two night stay at the Fairmont hot springs resort, let our kids swim to their hearts content. A waterside, three heated hot spring pools, a petting zoo, and golf, was just what the kids needed after all the driving. My second oldest, Ada, was so sad to leave Montana, and asked as we were departing, when we could go back.

And then on to the "little green house" in Oregon for the mainstay. It would be impossible to go over everything we learned but to sum up our experiences, it was a time for us to rebuild Will's trust in us as parents. I did not go into this thinking that this was what I would get out of it, I was expecting more of an indoctrination experience rather than an emotional one. I realized that just because Will did not develop sophisticated interaction, he desperately craved to be played with like we would play with him as an infant and toddler. We realized that forcing him into situations which might be traumatic to his sensory system is effectively breaking trust with us, but also that slow deliberate coaching during these fight or flight times is the perfect time to rebuild trust. I cannot say that everything has been better since our return, but man, things have changed! I can say though that the gurus did not work their magic on him, but they did remind us of the magic that persists in the phenomenal relationship between us and our socially challenged child.

We ended our trip with a night at the coast. I thought that the children would be more impressed with seeing the ocean for the first time, but to a child, big is big and big to them happens every day. After detouring through a mountain pass by Mount Rainier, we trucked home. The kids were awesome in the car, the parents not so much!

My Road Children!

We all were so happy to be home and the highlight for the kids was coming home to their garden to find that their sweet corn had grown to six feet tall.

Empty Backpacks: first week of third grade.

Gripes and more gripes. I wish I could be hopeful about this upcoming school year, but I am instead feeling bitter and powerless. Last thursday I visited the school for "meet the teacher night", and as I begrudgingly handed over the $60 worth of supplies to the teacher, I kept asking myself, "why?" Why even say he is third grade, when he is still learning 1st grade concepts. Why even give the assigned teacher the recognition when she will have no say in my son's progression. That left me with another question: "Who." Who is ultimately responsible for educating my son. He spends most of his time in the autism room with 6 other kids who are in the same predicament. Sure this room is manned by an autism resource teacher and assistants, but it seems as if they are just there to make the schedule, run a social skills group, and do the minimum 15 minutes of direct teaching per student, per day. 15 MINUTES. My son goes to school 6 hours a day for 15 minutes of learning. Sometimes it takes 15 minutes to just get Will to sit still and attend.

The IEP helps little, it cannot spell out specific academic goals, because no one really has the time to develop 7 individualized curriculums. Instead the IEP if filled with 20 pages of social and behavioral goals, which are necessarily in place because he is in an environment which is inherently caustic to his autism. It is like throwing a nail into a water bath and then attempting to scrub off the rust as it appears.

So a week has passed, and 5 days of "empty backpacks" later, I am wondering, did they even read this minimal IEP? They have provided no correspondence, missed feeding him his packed lunch three times, and have mysteriously added 45 minutes to his bus ride when it literally takes 45 seconds to drive to the school (we live 3 blocks away). I have resorted to taping notes to the front of his backpack because I don't think they are even looking in it. Furthermore, next week looks like I will be very busy "advocating" i.e. "policing."

Oh how I wish Minnesota had a private school (other than ABA) capable of teaching a child with moderate autism. Sorry Minneapolis Public Schools, you aren't cutting it!

Some Moms are Driving Me Crazy!

I recently read this blog post featured by Parents Magazine. This post stirred the ever brewing pot between stay at home moms and working moms.

My Sitters Are Driving Me Crazy Part 1

This hit a nerve with me firstly because it is blatantly disrespectful to the caregiver and secondly because it is blatantly petty. I have a hard time listening to obnoxious gripes about missing sippy cups and the like. Why complain about it on a blog...spare the readers the details. If it is for the comradery, you missed your target, most people have real issues to face. I don't think it is a battle between stay at home moms and working moms, but I do think it is a battle over those who keep it real and those who don't.

I am finding it increasingly harder to relate to certain moms. You know the ones who announce to the world via facebook that they need "ME time" because little Johnny dumped his cheerios on the newly mopped kitchen floor that morning. Or the ones who venerate themselves by proudly displaying the latest line of mom essentials tucked neatly inside the "touch it and I'll beat you" Coach diaper bag. Or the mom who hovers over a child's stained shirt, but ignores it when the child's rudeness brings another child to tears. Or the mom (and I quote) who said she wished she had not wasted her "sexy years" being a stay at home mom. Or finally the mom who has head-butted her way to 10 point buck status by adorning and parading every achievement of her abled-children.

Yes... having a disabled child catapulted me into the category of "those who keep it real." I wonder though, if I had not had Will, would I have been one of them? I consider myself lucky to have learned early, but why do I still have such a disdain for the "other side"?

Here is a blog written by some moms who "keep it real." I had the chance to hear them speak this spring. It is worth sharing...

http://www.psychologytoday.com/blog/shut-about-your-perfect-kid

Medicating Autism

This weekend my son presented with horribly disabling headaches. He has never had this before so my mind immediately ran the worst scenario course. Did he have a tumor? Did he have an unreported accident at school, did he hit his head too hard on the Wii remote when his game didn't go his way? All he could say was "you hurt, you tipped over" (he often communicates in the 2nd person)

After contacting the school to ensure no injuries, we brought him into the doctor. They suspected it was a migrain, and not anything traumatic.

At this time though, I am done with the guessing game. Things are not right if I am having to bring him in at the thought that he could have injured himself during one of his panicked states.
I asked about the use of anxiety meds and if he knew of a skilled physician who could look into this. Instead of admitting that he was not the person to administer it, he of course had to weigh in with his opinion which went something like this: "you cannot measure anxiety, and therefore it is hard to weigh the benefits against the risks?"

I was a little dumbfounded: Anxiety not measurable? My son is on your office because we know that his anxiety leads to behaviors which could have really hurt him. Is that not a measure? How about hyperventilation, increased heart rate, increased skin conductivity? There are obvious measures.

The Galvactivator measures Skin Conductivity. Children use it as a way to self regulate.

 Measured Skin Conductivity during a balloon encounter

All I heard was the same old: " your son has autism, there is little you can do for him medically" spiel. As if I am in denial! Dear God, I live this every day, I just want to help him, not cure him. Is thinking that I could improve his life and decrease his vulnerability denial?

I did get a name of a child physchiatrist along with his dose of skeptisism, so at least the humiliation of asking in the first place was not in vain.

I welcome any opinions on the matter from those that truley know! Do you medicate? Is it helpful or harmful?

Happy Birthday: Big Shopping and a Big Year

A few nights ago Will and I went "big shopping." While I was bagging the groceries he was inching away towards the exit. He is quite perceptive and has learned that darting off usually results in capture while a slow quiet pace has a stealth like effect on me. He managed to slip by me and hit his target, the coke machine. When I realized he was gone, I brought him back, scolded him and tried to get him to help me bag. Of course he had no interest, he was too preoccupied with the big, mean, red mechanical bully that stole his quarter.

The checkout lady saw what was going on and had the amazing idea to employ Will's insatiable love of buttons, numbers, money, and mechanics. He was hired on the spot. As he stepped up to the register he proudly became "Will the Checkout Boy" or as he himself would say "Will, Cub Foods Team Member."

He had two happy customers whom he diligently checked out, received payment from, and returned receipts to. He also had one Happy Mom beaming with pride.

Will turns eight today and it has been a big year for him. What is most magical is that he has developed a sense of pride, a sense of self, a sense of personal accomplishment. I had almost given up on this social milestone, but then it came.

These are all of the wonderful things my son took pride in this year:

1) riding a two wheel bike
2) swimming in the deep end and diving under water
3) tying his own shoes
4) making it all the way across the monkey bars
5) constructing and deconstructing just about everything

Autism and Marriage: A Toast to Ten

Today I would like to make a toast to my husband (and, ok, myself too), for making it through 10 years of marriage, despite the odds. It might seem a little dismal to be saying this instead of cooing "I luv you honey, thanks for the ten" or "I am still as in luv with you as the day we wed," but come on!!! The reality of it is this: if I had a crystal ball on that day, showing me the shadows of my life ten years from then, would I have made it to the alter? Probably not--I would have been scared out of my mind! The maturity was just not there, not yet!

On May 12, 2001,  I was thinking about May 12, 2001, thank goodness, because we did have a beautiful wedding . On that day,  I was overjoyed (to tears) to be standing there with my future life partner, someone who had all the potential to "be there for when...".  But, when the priest asked "will you accept children willingly?" I did not stop and think of such things as, "only if they are normal" or "only if they can love me back." Things were as they were and how they should have been: a moment of blissful naïveté.

Of course the priest warned us about this, as do most, that this is only a day and that marriage is a lifetime. We even thought we even understood this concept right and were willing to accept that it would not be easy. After all we are two different people and disagreement = difficulty,  right?

What we did not see at the time though is that although the "against" times that are hard, the "together" times can be even harder. It is lying together in a hospital room with our compromised fetus while a treasured parent is simultaneously lying in a hospital room miles away dying of brain cancer. It is sitting together in a room with a panel of experts who are saying that your beautiful child (who fought in the first place to make it into this world) was significantly delayed and had enough traits for an autism diagnosis. It is being together, in a home that you have built, knowing that if you were not together, this pain would not exist. Seeing the "other" suffer multiplies your own pain and TOGETHER it is hard.

There will continue, I'm sure, to be moments of blissful naïveté (vacations, parties, promotions and bonuses) but anniversaries are not one of them. Instead, I raise my glass to the sweet pain of then and  now, and to the "other" who has gone to hell and back with me.  I never knew we could... but happy that we HAVE.

Traveling with Autism: A Travel Social Story

We recently made a trip to a family wedding, 12 painfully long hours away. We loaded up the four kids, the famous cartop "bubble", many MANY videos, and headed out not knowing whether we were about to tunnel through to another dimension of craziness.

Having a child with autism requires preparation beyond the few days immediately preceding the trip. We somehow have to explain to a child who can't ask questions why we are taking our clothes, a crib, food, and god knows what else (since our girls can now help pack) out of his well established grid and into a new environment for which he has no map. He doesn't understand marriage or weddings, he doesn't really even get wanting to visit the people we haven't seen in a while. Without the "why" it probably comes across as the most random bizarre thing one might do.

Will doesn't typically have severe anxiety, but staying at a new house causes panic. He is good until the lights go out, then the screaming, hyperventilating, and desperate pleas for home begin. If we manage to get him to sleep, he wakes almost hourly, in a frantic fight or flight state. Needless to say, once the sun comes up it is if nothing has happened? Unfortunately WE cannot handle the lack of sleep as well as he can, and the other family stresses ensue; bickering, & comparing.

This time we wrote a social story covering all the potential triggers and highlighting the things we know he would enjoy. We bound the book at fedex and gave it to him a week before, to get him use to the idea that this was going to happen. Our effort did pay off as he took to it immediately! He had only one tough night out of four, but more importantly he had fun and learned a little about what happens at a 

wedding. He even stated during the course of the trip that home was "boring." While I was worried about him shouting profanities during the vows, he was actually the most well behaved of my kids during the hour long mass (FRONT PEW...YIKES!!!).   

Why do I tend to think that when my child exhibits a behavior, it is there to stay? In this case,  I was to the point that I almost started to mourn the idea that our family could never have an enjoyable vacation. But... I gave him one more shot and he amazingly conquered his severe fears. I am SO proud of Him! 

What caused MY child's Autism

I was both inspired and frustrated at the PBS  News Hour AUTISMNOW report on autism causes. While I feel safeguarded by the brilliant minds dedicating their work to autism science, I found myself shouting at the screen, much like my sport fanatic brothers cheering for a good pass or flailing their arms in disgust after a bad call. While I myself enjoyed the luxurious cruise of the academic life, I feel that Autism science needs to leave the ivory tower and tap into the rich soil of those living it, treating it and parenting it.

http://www.pbs.org/newshour/bb/health/jan-june11/autism3causes_04-20.html

Has anyone ever asked you or me what we think caused our own child's autism? I feel that the question is avoided. In fact every time I offer a possible explanation of what could have gone wrong to a knowledgable but removed party,  I am quickly cast into the mass pit of popular hysteria. I have had one developmental pediatrician tell me: "you've gone as far as you can go looking for a reason," another pediatrician say, "the best thing you can do is take him home and love him," and a neurologist say "... "be thankful there are no other complicating health issues." While most of these were said with good intention, I still got the feeling that my perspective was unremarkable. It was these times that I was so tempted to dive into my own resume and fight the battle of the minds, but I resisted. Think what they may...I left their office as the same undereducated, opinionated, emotional mom that they themselves have already deemed me to be.

The problem? The roadblock? It's the attitude that we all know the reputable experts have but won't admit to: "If we don't know how can 'they' know." I think we do know! We were there when the event took place, we know our family history, we felt the panic of " it's not right,"  or "that wasn't normal." They are field scientists ignoring their primary detector's data!  So, in honor of us knowing, I'm doing a simple online poll.  Comment your response and I'll post the stats monthly.

What caused YOUR child's autism? Pick two possible popular categories or write in your own, then weigh them.

A) genetic
B) prenatal exposure, if possible what? Medications,  toxins, etc.
C) prenatal/ maternal illness, if possible what?
D) incidental infant/childhood exposures, if possible what? Vaccines, medicines, etc.
E) chronic infant/childhood exposures, if possible what? Diet, environmental toxins, etc.
F) infant/childhood illness, if possible what?
G) Other, What ?

                                                       My entry would be...                                                    
                                               A) 20% and B) 80%, terbutaline