Uncertain Future

No matter how faithful one is, no matter how well things are going, our future is uncertain.  It just is.  Certainty can only be found in this moment right now.  Even our past can be somewhat uncertain if our memory is minutely or largely lost or distorted.  I guess one could argue that even the present is only somewhat certain because how we interpret this moment is filtered by our focus, our biases (good and bad), our senses.  I have searched hard for certainty in many facets of my life:  love, fertility, children, autism, and now in my health.  I search for certainty within myself.  I search for certainty from others.  I search for it online, in the eyes of doctors, in my dreams.  What I keep finding is that certainty doesn't exist and that it is folly to strive for that which is unattainable.

For me, I think my search has been largely driven by an inherent insecurity, a grappling for something to help me be grounded, to feel strong.  For me, finding a "fact" about something that I am experiencing validates not only my experience but me as well.  I feel certain that I am right.  I feel certain that I'm on the right path.  I feel certain that I am capable of handling this life, this situation.  Not only am I seeking certainty, my children now are seeking certainty about the big questions such as, "What happens when we die?"  "How do I know this is the real me and not the dream me?" and "When I die, how will Santa bring us presents?"  Ok, so maybe not all the questions are big ones but they are certainly big ones for my 5 year olds.

When I don't feel certain about things, I feel anxious.  I feel ungrounded and vulnerable.  I don't enjoy feeling like that so I'm compelled to seek the certainty that I feel I am lacking.  Over the last few years, though, I have feverishly sought certainty about infertility, about autism, and now about my diagnosis of Ehlers Danlos Syndrome, and I'm realizing that yet again I am facing unanswerable questions and that this endless pursuit of certainty is exhausting me.  I can't continue with this unrelenting pace and I must find a way to balance a search for answers while simultaneously accepting the unknown which is before me.  

For those with children who have autism, you know what kinds of questions that cross your mind.  What can I do for my child to help them live happy, productive lives?  What services do they need?  Will they ever talk?  Will they fall in love?  Will they be ok when I'm gone?  Then there are those nasty questions that needle at some of us like, "What did I do for this to happen to my child?"  "How can I be a better parent to my child?"  "What am I doing wrong?"

For those who have been diagnosed with a chronic condition such as mine, "What is this disorder going to do to me?"  "How bad is it going to get?"  "What do I need to do to make this as good as it can be?"  "Do my children have this as well?"  Then, the nasty, mean side of ourselves which asks, "Is this real?"  "Is this pain just normal and I'm making too much of it?"  "Do I just need to 'suck it up'?" "Am I seeking attention somehow?"  "Was my doctor wrong?"

Yesterday, I felt quite sad about my new situation.  I have concerns.  I continue to experience new symptoms of Ehlers Danlos that are disconcerting.  I don't like it one bit.  I know I have a choice though.  My life is a gift and I need to value it exactly as it is.  I don't need others to agree with me to validate my own experience.  I don't need an expert to tell me what I already know.  What I need is to listen to myself, to trust my instincts and to have faith in what I'm experiencing now and to find peace even in the darkest moments.  I also need to be brave enough to love autism even at its worst because it is a part of my children and my children deserve to be loved in their entirety.  I need to love all of myself even the parts that are unstable (literally and figuratively!), the parts that hurt and those that limit what I can do.  Just like my children, I deserve to be loved entirely and who better to love me than myself?  Of course, I can't help but have flash backs of the SNL skit with the line, "I'm good enough.  I'm smart enough and doggone it, people like me."  It's cheesy to say but profound when you really can feel that way.  

So, for those of you who can relate to this post, I hope this gives you at least a moment of peace.  If you have any particular things that help you feel comfortable with uncertainty, please share.  I believe we all have something to teach one another.  Thanks for reading.

The Power of Validation

Yesterday, my oldest (N) and I found ourselves in one of our classic quandaries.  N is a huge fan of Minecraft which is a computer game involving world building that can be played in the creative mode (where you don't have to worry about getting killed) or survival mode.  (For those familiar with Minecraft, I apologize for my very simplistic description of a very detailed, multi-faceted game.)  Lately, we've been playing in multiplayer mode.  I say "we" because I too have taken the plunge in order to understand my son and to have a great way to connect with him.  His younger brothers (who are 5) are playing with him as well.
Needless to say for those who are familiar with Aspergers (or autism in general), none of us play it adequately for N.  (I'm actually using our time on Minecraft as a way to work on his flexibility and social skills since he's more likely to learn these skills while doing something he loves.)

The quandary that I alluded to earlier began when N was playing my youngest twin (D).  N was playing a new 'mod' that was intended to be played in survival mode and had several, specific challenges to complete.  D wasn't interested in playing in survival mode because he can't play well enough not to die.  Since both boys are on the spectrum, their rigidity tends to lead to explosive episodes of aggression when they disagree.  Of course, this no doubt happens with typical children.  With spectrum children, though, the disagreements that lead to aggression can be about seemingly benign, trivial issues, and, even on those conflicts which are understandable, once they have set their minds a certain way, there is no clear way to reason with them.  The subsequent aggression is often way out of proportion to the importance of the issue (from an NT's perspective).

Inevitably, N changed D to survival mode remotely and then killed his brother's Minecraft character.  This, of course, led to aggression and resulted in N going downstairs to cool off.  N was beginning to escalate to a meltdown and so I went downstairs to help.  In situations like this, N is overcome with emotion to the point that he simply is out of control.  I often have to be careful approaching him during this time because he has hit me during these fits.  From a few feet away, I suggested he take some deep breaths and then I calmly tried to describe the situation - that he wanted survival mode but D did not and that it was OK if they played in different modes.  End of discussion, right?  Of course, that didn't work!  It was worth a try but then I had to pull back and listen.   As he thrashed around, he yelled the same thing over and over again:  "Sky Block" (the mod he was in) was SUPPOSED to be in survival mode!"   I stopped trying to fight him on that point because, like it or not, N saw it as a concrete, black and white issue and he wasn't going to see any gray.  I knew that if I continued to push that point, he'd only escalate further.

Instead, I had to be flexible in my thinking.  I had to validate my son's feelings because, whether I saw it a different way than him, his feelings were legitimate.  I gave him a moment and then told him that I understood that it was frustrating for him because he wanted to play Minecraft the way it was supposed to be played.  I understood that he was very angry that his brother refused to play the "right" way.  My saying this calmed him somewhat and took the edge off his anger.  I then talked about how we all have to learn how to do things and that some learn faster than others.  I gave the example of riding a bike and how training wheels help a rider learn to ride.  I told him that creative mode was like training wheels for a learning bike rider and that D needed his training wheels when he played.  Not giving him his training wheels (creative mode) was kind of cruel since he wouldn't be able to ride (i.e., play the game).  I saw a light in my son's eyes and could see that he got it.  He switched back immediately (as he often does) to the sweet boy I know and he hugged me.  My showing him that I understood what he was feeling and telling him that his feelings were legitimate made him feel safe and secure which then led to his being more flexible in his response to D.  They continued to play with D in creative mode and they didn't fight about that issue for the rest of their time playing.

I think everyone deserves the right to have their feelings validated.  When we refuse to validate another's feelings and experiences, we may miss an opportunity to connect with them, to fully understand their situation as well as help in times of struggle.  When I think of pivotal times that my feelings have been validated after years of being ignored and/or disputed, I can still feel that sense of release that comes with it.  I think of when my first, second and third children were diagnosed and, more recently, when I was diagnosed with Ehlers Danlos Syndrome.  When professionals were poo pooing my concerns about my children, it was harmful to my family because our struggles were being belittled and unsupported.  When my aches and pains were written off as being in my head or insignificant, I continued to harm myself unintentionally because I didn't understand that my hypermobility was making me more injury prone because I continued doing things as if nothing was wrong with me.  Even if we as humans disagree with one another, we should validate each other's feelings and perceptions out of a sense of humility and respect for their dignity.  When we validate another, we may also discover a truth unseen before and may be able bridge a previously invisible gap or we may be able to help another find answers to their concerns.

After my recent diagnosis I now look back on my life with a much better understanding.  I can't help but feel resentment toward those who didn't listen to my concerns, but, more importantly, I recall my own self doubt that resulted injury after injury.  Instead of malformed collagen, I thought maybe there was something wrong with me as a person.  I realize now that I need to continue to remind myself that I need to fight for what I believe despite those who disagree.  We mustn't depend on being validated to maintain our resolve which might sound like a contradiction to what I have said above but, with our children and our loved ones, we need to recognize the power validation has and to dispense it freely.  If a child is surrounded by those who dispute their feelings, their self esteem is at risk and they may succumb to self doubt and may not flourish as well as they would if we recognize the legitimacy of their feelings, experiences and perceptions of the world.  If, however, we validate their feelings and experiences at an early age, they will learn from us that their feelings are legitimate and, hopefully, will take that confidence with them to fight for what they believe in.   Of course, everyone experiences self doubt but maybe our children can be armed with less.  When I think of validating others, I find myself reflecting on the Sanskrit word (and gesture), namaste, which can translate as, "I recognize the divine in you."  I think when we validate others, we put that into practice.

   

Waterlogged

You would think I would be a mature adult at this point in my life.  Something about IVF, twins, and autism times 3 should have molded me into a competent, functional adult yet after my behavior yesterday at the community recreation center, I have my doubts.  Here is the scene:  I have just finished doing my exercises in the pool, involving swimming laps and walking backward through the lazy river, when I proceed to swim behind the seniors water aerobics class on the way to the stairs.  For those who know me, I think most would agree that I am typically a polite and courteous person (especially with strangers since I am a Texan after all).  I was swimming slowly and as far away from the class as possible (the class is not roped off and there were people around it) because I didn't want to disrupt the class.  However, the older adult female teaching the class caught my attention and, with the tone of a teacher, pointed at the sign indicating a class was in progress.

I stopped and said, "Yes, I can read.  I was just getting out of the pool."  With a tone dripping with disapproval, she explained that I could simply walk.  Now I should have just continued on and let her tone and attitude roll off my back along with the chlorinated water but the child in me couldn't resist responding in a way that my previous 13-year-old self would have applauded.  I waved my fingers in the air and stated in a sappy, annoying tone, "Well, PARDON ME!"  I then proceeded to the stairs and then to the hot tub.

Steaming figuratively and literally in the spa, I was trying to convince myself that my response, although relatively mild considering what filth can exit my lips, was justified and that I was being treated as a child by an older crowd of women.  I also was puzzled by my emotional reaction to it because it simply hurt my feelings.  I hate to be reprimanded for something that benign and when my intent was good.  Then it struck me that part of my reaction had to do with the fact that I felt like they saw me as this young thing who is being careless and who may not have the troubles that they do (as was evident by the multiple canes propped by the stairs for their use).  The irony was that I'm not that different from them than they realize and how dare they assume anything about me!  I was ready for a show down with older ladies, and I realized that I needed to chill out.

What influenced my mood yesterday was the fact that earlier that morning I received confirmation that I have a rare, connective tissue disorder called Ehlers Danlos Syndrome (EDS).  Simply put, my collagen is malformed resulting in hypermobility of my joints and early onset, degenerative arthritis.  I was swimming because, at this point, it is the safest way for me to exercise without injuring myself.  As a result of EDS, my joints will wear out sooner than most and I am more prone to injuries such as dislocating my knee cap, spraining and straining muscles, ligaments, etc.  Technically, I would probably benefit from the seniors water aerobics more than they realized.

I also realized that it is highly likely that at least one of my children has inherited this syndrome.  As I struggle to find my way to live injury free while staying healthy, I can't help but ponder how I will help my affected children with yet another diagnosis which will prove challenging to them as well.

So, I was childish and immature in my response.  I also overreacted and took it too personally but I simply was having a bad day and, "pardon me!" wasn't in the mood for anyone's assumptions.  I'm thinking I'll crash their next class and see what happens.  Will they accept me despite my age, or look down their noses at my seemingly young, healthy self?  Stay tuned for another segment of my battle with the waterlogged gals of Murray.

Opening Gifts Social Story and Games

Opening gifts can be quite a challenging experience for children on the spectrum who have strong ideas about what they want and who also do not always filter strong feelings, particularly unpleasant ones.  In order to prepare for my oldest son's 7th birthday party, we felt it was important to practice how to respond to a gift, particularly one we don't like.  First, I created a social story which I read to all 3 boys before doing the two activities described below.

The following social story explains 4 steps to opening gifts:  1) Open card first; 2) open gift; 3) thank the person for gift; 4) say only positive things about gift.

First Game:  Think it or Say it?

Explain that there are some things that are best left unsaid and to be thought only in our head.  Show the two conversations bubbles and make sure it is clear that the one on the top is for phrases to only be thought and the one on the bottom is for phrases which can be said out loud.

                   

Since we are working on improving social skills in regard to opening presents, write several “good” and “bad” phrases regarding a pretend present on paper and have children pick them out and then. . .

                      . . .have them place the phrase on the appropriate bubble as shown below:

 

One additional thing I included with the phrases were pictures of people's expressions.  I had a grumpy face, a smiling face and a "blank" face.  I acted out each expression while saying "thank you"in order to show how our expressions are believed more than our words.  I had them put the appropriate expressions along with the phrases.

Second Game:  Let's open presents!

        

I took the lesson one step further by creating a role play game involving opening pretend gifts.  I purchased cheap boxes from a craft store and drew bows on them (in order to avoid having to worry with wrapping paper):

This activity may be done as a group or individually.  When working with more than one child, place something desirable in one box and something undesirable/less desirable in the other.  Read the social story first to help remind them how to open gifts then hand each child a gift.  The goal is to have the child say “thank you” as genuinely as possible when they open the “bad” gift.  Repeat the exercise enough times that all children have the opportunity to get both the “good” and “bad” gifts.  (When working with one child, simply repeat the process and alternate when it will be good or bad.

Example of "good" gifts (candy)

Example of "bad" gift (staples).  Keep in mind that safety is important.  I would not suggest staples for those under 3 or for those who tend to place items in their mouth.

 

I changed the “bad” gift each time so that they were not getting used to reacting to just one bad item.  Examples of "bad" things you could use are:  buttons, a cotton ball, blank sticky note or anything lying around the house which is neutral and safe but boring.  With my children, they not only enjoyed the process, they went from exclaiming, "Staples?!!!" for example to "Thank you" with a smile on their face.  It is a fun activity for all as long as everyone has equal opportunity to open a "good" gift.

My oldest's 1st day of 1st grade quote

First thing he said to his teacher when she introduced herself to him: "that's the funniest voice I've ever heard."
Sent from my iPhone

Driving lessons

My youngest insisted he knew how I should drive as we were stuck in traffic. "Cafe' car is strong. She could just crash into the car in front of us which would make the other cars go." I'll need to remember this when he gets closer to driving age.

This picture is of a car my oldest made with Zoobs.

No shame in our game!

Funny Quotes

My 4 year old on the spectrum was quizzing me about bees and how they made honey.  I explained that bees got nectar from the flowers and took it back to the hive where they made the honey.  He looked at me seriously, "What are the ingweedients?" 

My oldest with Asperger's showed his grandmother his hands which were wrinkled after being in the pool for a long time.  He said, "Look, Mammaw, my hands are as wrinkled as you are!"  Thank God she has a sense of humor!

I was reading a book on idioms I had recently purchased and was telling my oldest about the history and meaning of the idiom "getting up on the wrong side of the bed."  According to the book, in ancient Roman times, it was considered bad luck to get out of bed on the left side.  My son thought about this and stated that he was "bed-a-dextrous" (playing off the word ambidextrous).

Thanks for the lift

People often ask me how I do it.  How do I get through the days raising my children - autistic as well as neurotypical?  I always appreciate the sentiment since sometimes it's nice for our challenges to be acknowledged.  No matter how many times I'm asked it, though, I never seem to find a good answer.  These days, I tend to laugh and tell them they can come to my house and see what falls through the cracks.  Here are the latest examples:  a couch is in our back yard still waiting for the trip to the dump (we don't have a truck and we need help with lifting it); one son's room downstairs has half the carpet pulled up after a leak in the foundation which requires a simple repair that has yet to be done; we are wasting water with a leaking toilet (yes, I know, my enviro-karma is severely poor right now); we have a Lazy Boy in our garage that is also waiting for its last ride to the the landfill.  If I were to add the things my children have broken to this (the second trampoline, a cabinet door, and so forth), you'd think our house was a wreck.  It is and yet it isn't. 

Most things related to the children's day-to-day activities are organized:  monthly calendar, daily schedule, chore charts, map charts, self serve bins and so forth.  Essentially, it comes down to triage.  It would be crass of me to imply that we are unique in how we have to prioritize our household/life to-dos.  I do think ours is a bit unusual and, unlike some, our busy-ness is not by our choosing.  Prior to having kids, I remember thinking how busy I was and that I never seemed to get anything done.  Now, I realize how much time I did have because I still had time to do non-essential things such as go to a movie, the neighborhood pub, chit-chat on the phone, watch TV, and so forth.  Today, it is hard to find the time to do the essential things:  prepare for my son's upcoming IEP (special education) meeting, cook more than chicken nuggets, get my kids' medicine at the store, spend special time with my typical son who is feeling left out, and so on.  Compared to these things, the small crack in the foundation, the lovely couch in the yard (I jokingly consider this our white trash display), or the leaking toilet are annoyances that we'd like to address but which are overshadowed by what my husband and I find most important:  our family, our sanity and our basic survival.

I would be remiss if I didn't also point out that, in addition to prioritizing our life a wee bit differently, we are fortunate to have a wonderful support network.  What does support for a family like ours look like?  It's quite varied but all equally helpful and appreciated.  From the speech pathologist who celebrates your child with you to the occupational therapist who teaches you ways to help your child navigate his/her world more comfortably; from the mother-in-law who unselfishly watches your children even if her back doesn't feel great to the awesome respite worker your children love; from the consultant that tells it to you like it is without making you feel like dog doo to the friend who brings you cookies because she knows you've been having a rough time; to your Mom and Dad who are always a phone call away and listen patiently to all the crazy emotions you struggle with day to day.   All these ways help.  So, when people ask how I do it, the best answer is that we are all doing it together and, despite how I may feel at times, I am certainly not alone.

Happy F'ing Father's Day

I recently read a good post about trying to find a good Father's Day card for a father of a child with special needs.  Here is the link:  http://utahmaks.blogspot.com/p/perfect-fathers-day-card_05.html.  It's a great post, although it's a little nicer than I am as you can see by my title.  You would think that Father's Day for a father of children with special needs would be a massive celebration because it should be.  My husband deserves a fantabulous Father's Day.  He deserves a day dictated only by his desires, his needs, his wants.  Instead, he will be subject to the daily difficulties and upsets.  Complicating things, his work is hounding him (he has to work at midnight tonight - lucky him), and I have been made temporarily useless after a seemingly minor back procedure.

I can relate to the anonymous author of the post above.  When I was looking for a Father's Day card, I found myself laughing out loud at how different typical father's lives must be.  Since the cards are for the majority of the population instead of us deviants, it's a bit of a slap in the face to be reminded that my husband could have an easier life.  I realized that I needed to reinterpret what Father's Day means to our family.  Instead of a manly day of rest and play, it's should be a day for me to honor him for not giving up, for loving his sons even when they don't appreciate him - which is too often, for loving me even when I'm stressed out and unable to just be his wife instead of a mom of special needs children.  This Father's Day, he may not smile as much as I'd like or he may not be as relaxed as I would want him to be but I will show him my appreciation as he and I as a team meet the challenges of autism head on together.

Although I was tempted to buy an "encouragement" card which seemed more fitting, I finally found a Father's Day card which I took the liberty of editing by adding some things to the pictures and including my own conversation bubbles to make it fit us and him better.  I hope it at least makes him smile and the he is aware that he is incredibly special to me and the children and that, although it can be very difficult, we appreciate him for rising above it all despite its difficulties.

With love to my husband of nearly 10 years.  Smooch.

Nothing to shrug off

I'm curious what my body language is telling everyone as I lay around the house while recovering from a minor back procedure.  Do I look like I'm feeling sorry for myself?  Do I look happy as my boys bring me flowers, bring me water and blankets?  I definitely hope the latter.  Although the procedure was minor, the recovery had an unexpected twist involving the possibility that I could lose feeling in my legs without a moments notice and I could fall flat on my face.  Of course, this risk is only for the next few days but it would have been nice to know prior to my scheduling it!  Anyway, perhaps I'm odd because, instead of eating Bon Bons and watching chic flicks, I have spent the last two days reading a very interesting (to me) book about nonverbal behavior.

The book is titled, Helping the Child Who Doesn't Fit In by Stephen Nowicki, Jr., Ph.D. and Marshall P. Duke, Ph.D.  I personally find the title to be seriously lacking because, until I began to read it, I had no clue that the entire book was about nonverbal behavior and how it impacts one's success in social settings.  I probably would not have picked up the book had it not been cited in another book I had read which I can't seem to recall at the moment. 

So often when I read books that in any way might relate to autism, I find myself rarely surprised by new information.  I may gain a better understanding of something of which I am aware but I've read enough now that my notes for each book seem to get smaller and smaller.  This book, however, was a refreshing eye opener and offered more insight into deficiencies people with autism may have in regard to interpreting the non-verbal signals of others and/or expressing their feelings non-verbally.  Also, it is important to note that I never saw the term "autism" used throughout the book, although I do admit that I did just skim the last two chapters regarding assessment since I felt that we have had sufficient assessment thus far and also that, since it was published in 1992, things have likely improved or changed since then.

The authors opened my eyes to the important role that non-verbal communication (NVC) plays in our ability to interpret the feelings of others and our ability to express our own.  According to Nowicki and Duke, only 7% of emotional meaning in communication is expressed via words.  In other words, 93% of our emotional meanings are expressed via NVC.  That's quite significant.

What I also found fascinating is that when NVC and VC are discordant (in other words, when they don't match each other), NVC is more often interpreted as being the true feelings of the speaker.  A great example of this is the use of voice tone (NVC).  By manipulating our tone, which is considered paralanguage since tone in itself is not words, we can say to someone, "I hate you," while actually conveying via tone, "I love you" or vice verse.  The power of NVC to affect communication is much stronger than I had originally realized.

The authors list 6 main types of NVC which impact communication.  They are 1) Rhythm and use of time, 2) interpersonal distance, 3) gestures and postures, 4) eye contact and facial expressions, 5) paralanguage (sounds without words), and 6) style of dress and hygiene.  Deficits in NVC can occur in our ability to interpret how we receive NVC from others (receptive) as well as in our ability to express our feelings non-verbally (expressive).  As I read through each chapter detailing each of these types of NVC, it became clear how often many, if not all, of these areas are often a difficulty for persons with autism.

In addition to describing NVC and the impacts of deficiencies in any of the types of NVC, the authors provide specific steps which parents and teachers may use to assist children who have difficulties in any of these areas.  An example of a suggested activity one can do to assist these children is playing charades that involve interpreting or expressing gestures, tones of voice, facial expressions and so forth.  Also, creating "dictionaries" of facial expressions, gestures, etc.  The ideas they provided are helpful and have inspired me to begin creating a NVC program for my boys.

Finally, another point that I found particularly profound, although seemingly obvious, is how people with NVC deficiencies are viewed by others and how this differs from how a person with verbal deficiencies is judged.  The authors give the example of a person speaking with poor grammar.  People listening to this person are likely to view them as unintelligent or uneducated.  When a person uses inappropriate NVC, such as sitting right next to a person in an empty movie theater instead of sitting somewhere else, the person is likely to be viewed as odd, crazy, weird and even dangerous.  The difference in how these deficiencies are judged helped me realize how important it is that NVC be a factor in assisting persons with autism to learn to interpret and use NVC better in order to improve their social acceptance.

So, I'm now reclining like a queen on my throne feeling like I didn't waste away the day watching silly movies.  My facial expression probably shows some fatigue, my hygiene is definitely questionable since I'm not allowed to bathe until tomorrow (yuck!) but I think that I probably show a bit of pride for having found some more useful tools which may help my little monkeys with this wild and wacky world they've been thrown into.  Now for my paralanguage, "ZZZZZZZZZZZZzzzzzzzzzzzzzzzzzzzzzzzzz."  Good night.

Sacred space, sacred time

When I'm wallowing in my deepest funk, everything about my life looks and feels like Hell.  Hardly anything can penetrate the despair that envelopes me.  Let's face it, when autism sucks, it SUCKS.  It can be ever present, ever incapacitating, ever stressful, ever sad.  Of course, yes, there are interesting, fascinating, and even fun aspects of autism but not enough to compensate for the overwhelming impact it has on the entire family.

Now, when I refer to autism sucking I'm not saying that my children suck.  I love, adore and live for my children.  Even when I'm outwardly mad at them for acting autistic (as if they have a choice!), I know that it's not their fault.  They didn't ask for the neuro-developmental slap in the face.  They didn't ask to struggle every day with anxiety, frustration, and confusion.  They had as much choice in being autistic as my husband and I had in having children born with autism. 

When I'm having a dark day and I feel like I can barely keep going, I have to make a choice:  do I resign myself to this feeling of despair and sadness, or do I get off my figurative butt and shake off the sense of powerlessness?  I'm fortunate that I was born with a stubborn resolve to be happy.  I cannot tolerate being sad so I do everything I can to make bad situations better.  Like anyone, though, life slaps me around and I find myself cowering, afraid to respond to what she has given me.  It is in those moments, that I find myself craving the sacred, the divine.

As I've mentioned before, I'm not Christian.  I have had the fortune of being exposed to a variety of faiths and I find that all faiths are filled with divinity.  I think for those of who feel the need for the sacred, we know where to find that sense in our self, that connection to the divine even if you don't believe in God per se.  I find that when I'm at my lowest, I retreat within myself and search for that peace, that love and acceptance which restores me.

Of course, I'm not suggesting anything new by saying that it's good to relax and reflect when times are tough.  The trick when raising children on the spectrum is finding a way to access that when melt downs are occurring, when the house may be filthy, when they are repeating themselves over and over, when you simply can't get away.  I can't help but recall a funny quote I read on a coffee cup the other day which stated, "If by 'happy' you mean trapped with no means to escape. . . ?  then yes, I'm happy."  It's during those moments when you know what you need to feel better but you simply can't escape to do it that the need for a sacred space and sacred time is essential.

By a fluke, my little monkeys did me a favor when they misbehaved several weeks ago.  My twins were having a blast in the bathtub downstairs.  We were nearby and could hear their squeals of laughter so we weren't concerned about their safety or anything.  Then we heard a loud bang.  Nothing like those lovely moments of racing to find out what has happened now.  Apparently, the boys thought throwing a cup full of water high up in the air was hilarious until it hit a light bulb above the sink and subsequently knocked out the power in the bathroom. 

We debated about calling in an electrician.  We ended up putting it off long enough that I had an idea.  I would make this bathroom OUR (my husband and my) bathroom and we would only use candles in it or would just enjoy the sun streaming through the window.  Over time, I've been slowly making this bathroom our own by placing candles and natural oils in it, by stocking it with lovely soaps that smell heavenly, and so forth.  Every day, when I take a shower, I light all the candles and make time to find comfort in this short ritual.  Even on days when I'm not really into it, I go through the motions of lighting the candles and, once finished, pausing to find my inner strength before blowing out each candle.  It won't make the bad days go away.  It may not even keep me from falling into states of sadness but the act of intentionally making time to nurture myself despite the stress is very restorative and often helps me to remember that I'm part of this whole equation, that there is more to me than being the parent of children, on and off the spectrum. 

I'm working on finding other opportunities to find the sacred throughout my day.  From listening to music that stirs my soul to reading quotes that make me feel strong, I'm making the conscious decision to make those moments occur because they are important, because I am important.  I hope you may also find such rituals and moments to nurture yourself.

A powerful lesson for neurotypicals (NTs)

Last night, autism has taught me yet again that my neurotypical (NT) viewpoint is limited and that there is an endless amount of wisdom to be learned from those with autism.  In 100 cities at 7:30 p.m last night, the exceptional movie, Wretches & Jabberers, was played, and I was fortunate enough to be able to see the movie.  If I had my way, I would want the film be made available throughout the country and the world.  As the number of those directly or indirectly affected by autism continues to increase, it is of paramount importance that films such as this be shown.  

The film documents the advocacy efforts of two autistic men, Tracy Thresher, 42, and Larry Bissonnette, 52, who travel to Sri Lanka, Japan and Finland to show the world that their outward appearance and behaviors mask the true intelligence and competence hidden within “the beast” as they often refer to autism.  With the help of keyboards and assistive technology, Tracy, Larry and fellow autistics who they meet during their travels, not only communicate their thoughts effectively but in a manner which can only be described as poetic and profound.  

Flapping, shrieking and making frequent unintelligible sounds, both men exhibited the signs of what is viewed as severe autism.  By the unaware NT world, they would be viewed as mentally handicapped and learning disabled.  Society would not expect much from them based purely on their outward appearance.   Wretches & Jabberers forces the NT viewers to realize what an incredible disservice it is for those of us who can verbalize our feelings, who can behave “typically”, to believe that those such as Tracy and Larry are nothing more than poor souls who are barely capable of daily living.  

Traveling across the globe, meeting with students and speaking at conferences, Tracy and Larry speak unflinchingly about how difficult it is to be trapped in such a state, being judged as unintelligent but being unable to communicate that they knew exactly what was going on around them.  Even as a parent of autistic children, both of whom are verbal, my eyes were opened by how truly the same we all are.   What may seem like profound differences between NTs and autistics is blurred and challenged with each question Larry, Tracy and the other autistic persons answered and each thought which they shared.  

What I find myself further awed by is that Larry and Tracy never showed resentment or anger toward those who misinterpreted (or continue to misinterpret) them.  I find it difficult to imagine that they don’t have those emotions but, in their tireless effort to advocate for the autism community, they present their world to the NT world in a manner which is positive, often humorous, truly beautiful and forgiving.  I can’t help but feel fortunate and encouraged that we may be able to expand this opportunity to connect with our fellow humans who have been dealt a difficult card with autism via the help of assistive technology.  I can’t help but feel deep regret and remorse for those who, in the past, were severely underestimated and mistreated and for those who currently are trapped in a world without speech and who are judged ignorantly by those who deem themselves to be superior in knowledge and abilities.

I truly appreciate those who have made this film possible and for opening my eyes yet again to the beauty often hidden within our fellow humans affected by autism.  In tribute to two very brave men, I am sending a toast out to Larry (who loves beer too) and Tracy.  As the parent of children who are often misinterpreted, I am truly grateful that they have shared their message with the world.

(Visit their website at http://www.wretchesandjabberers.org/about.php)

The cloud evaporated me and then rained me

Off and on over the last few weeks, I have been reading Charles Hart's Without Reason: A Family Copes With 2 Generations of Autism.  As the subtitle suggests, Charles Hart provides details regarding his life growing up with an autistic brother and, later, raising a child with autism.  Not only does Hart provide an historical perspective of the changing attitudes about and treatments for autism over several decades but he also provides insight into his own understanding of autism as a younger brother of a severely autistic man as well as the father of a son who is autistic.  Not only have I found the book to be informative and insightful, Hart's frankness and honesty is reassuring and comforting.  Although my children are higher functioning in some regards than his brother and son, I can relate to many feelings and situations he describes and Hart provides a perspective that I find quite interesting and thought provoking.  I don't typically dog ear books but, looking at the book now, I see that I may need to consider having a highlighter handy while reading it. 

Unexpectedly, Hart's book is helping me cope with my own feelings about raising two children with autism as well as raising a typical child.  One thing that I have struggled with since my boys were diagnosed is allowing myself to process the difficult emotions.  When I feel grief creeping up on me, I try to redirect my thoughts.  When I feel envy of others whose children are typical, I find myself avoiding their company.  When I want to simply cry because my children seem so much more vulnerable and misunderstood, I swallow it because it is too much to bear.  When I'm sad for my typical son whose life is so affected by his brothers, I suck it up and give him more and more hugs.  For some reason, Hart's book has broken down some of my defenses and allowed my emotions to break through.  As we sat at McDonald's tonight celebrating Mother's Day (because that's one of the few places we can take our kids to eat), my husband and I laughed at how empty McDonald's was.  Apparently, McDs isn't the Mother's Day hot spot. 

I was secretly glad that it was rather empty, though, as my sweet, oldest son jumped around and cornered the few children who were there.  Repeating the same script each time, he approached them and said, "Hi.  I'm (name).  What's your name?"  Sounds perfectly civil but to young children, his proximity to them, his mannerisms and his almost aggressive presentation baffled them.  Some would answer but wander off.  I appreciated those children far more than the ones (I am thinking of a girl in particular) who simply looked at him then turned their head as if he wasn't worth talking to.

My sweet son who wants friends but does not have the social understanding to make them continued to make efforts and even believed that he was making friends.  I can be thankful for his not understanding how the children were responding to him.  In some ways, I hope he doesn't lose that because I would hate for him to feel rejected.  Unfortunately, he needs to understand people in order to make friends so, in order for him to improve, he will have to experience this pain that I already feel so acutely for him.

As I watched my son, I found myself choked up.  I love all my children.  Each is so special to me.  Right now, though, my oldest seems the most vulnerable and "different" so, although I don't love him more than my other darlings, I can't help but want to shelter him, protect him and force others to see his beauty.  I know the world may not welcome him as I think he should be but I'm pretty damned determined to do my best to help him.

As I reflect on his disability (which I'm coming to grips with each day), I can't help but think of his amazing abilities.  He sees the world in a way that I can't fathom.  Although he experiences deep sadness and anxiety, he also experiences love and beauty in a way that I could only hope to experience myself.  I often am amazed and baffled by the things he says.  Sometimes, he'll say things that I can't understand at all.  Other times, I am just in awe.  My Mom sent me an email he had sent her today and, as odd and somewhat nonsensical as it is, I found it to be poetic and beautiful.  Here is my son's email:

"hi.today i  went outside and the cloud evaporated me, and rained me, i went right thru a transformers book and landed at sari's house." 

This was written by my 6 year old without my knowledge, influence or assistance and I find it very moving.  After reading it, I found myself repeating the phrase "the cloud evaporated me, and rained me" and found it to be so beautiful.  In a way, I feel that my son has evaporated me and rained me by changing me so drastically since his birth and, although, it has been difficult, he has released parts of me which I hope will help nourish he and his brothers and to influence the larger community to better understand and accept all these beautiful souls.

Little tricks

More often than not, when I'm writing on my blog I'm talking in broad terms and focused on the emotional impact (good and bad) of raising children on the spectrum (as well as one who is not).  I am hoping to expand the range of topics on my blog by including occasional posts which will discuss tools that have worked in our home.  I may also begin providing regular, short posts which will include amusing anecdotes and quotes from my children that are often very funny and amazingly wise. 

I will begin with the latest tool that we have been using to help us manage the many chores that need to be done in our house on a daily and weekly basis.  I purchased a folder from a teacher supply store which has a pocket for storage on the inside of it.  The following is a picture of our chore chart:

The chores to be done are listed on the left and the chores which have been done on the right.  The chores shown are those which I have selected for the day.  All other chores are stored in the pocket of the folder to be used on days I feel we should do that chore.  When a chore is completed, we move the chore from the "to do" side to the "done" side.  The boys enjoy pulling the chore off the velcro and placing it under their picture.

 

On the front of the folder, I have placed a list of all the major chores we do in our house.  I have also included what frequency the chores should be done (ideally).  Having this list on the front helps me review all the chores we may need to do since I can't always remember during the hustle and bustle of the morning.

We also have a daily schedule listing all major events of the day, including chore time.  I prefer to have a chore time in the morning and one in the afternoon.  The one thing to keep in mind with using a chore chart, particularly with young children, is not to expect them to be able to do a perfect job at each chore.  As far as I see it, having the boys see all the chores that are essential for a household to function is an important life lesson.  Teaching them how to perform the chores provides them with tools which will hopefully help them gain a healthy amount of independence as they grow older.  At the end of the day, I often point out who has done chores and give them praise for their help.  It's incredibly rewarding and satisfying to see all the chores completed and for the chores to have been evenly distributed among all family members.  One thing I like to remind myself is that teaching children how to live life may not be a class in school but it is perhaps equally if not more important than learning math, science or history.  Ideally, in my opinion, it's fabulous when math, science or whatever is taught as a part of daily living.