So I married an Aspie

I have given glimpses into many areas of my life here in the kingdom of Skiff.   I have specifically focused on the effects of autism in our lives but I have stayed away from one of the most personal ways autism has affected me, my marriage.  I have alluded to it in my first blog posting but since then I have steered clear of this delicate topic.   I have many times come close to addressing it but I wanted to have the right words to convey my thoughts and the lessons I have learned.  Also, much of this is old news for us.   On a daily basis our challenges now revolve more around the boys.  But this is a very important issue, one that affects many marriages and relationships.  To get to where we are now I have to start at the beginning.  So grab a glass of wine or whatever your preferred beverage and settle back as I steer this blog back in time 14 years.

It was August of 1997.  I left home and moved 500 miles to upstate NY to attend Bible school.  It was a small college located in a smaller town about 20 miles from Rochester. This was a strange new land where people did not smile as they passed by you in the tiny super market and they certainly did not strike up a conversation with you as you checked out at the register.   The temperature was cool enough to require heavy sweaters….seriously heavy sweaters in August!!!!  I might as well have been dropped on Mars.  This was an exciting adventure and I loved every minute of it.  On the first day of orientation, I saw him, the tall guy, with black hair, incredible blue eyes and a sexy jaw line.  Just my type ;)    I was smitten as I looked at him standing above me on the hill.  WOW!!  That incredible guy then started walking toward me.  There must be some mistake; he can’t be walking over to me, I nervously thought as looked around me.   Suddenly there was a tap on my shoulder “Hi my name is ------.  So where are you from?”   I don’t usually have trouble finding words but it took me a little bit of hemming and hawing to get my thoughts together.  We chatted for a few minutes; what we talked about I couldn’t say.  I drifted back to my dorm room and told my roommate all about the good-looking guy I had chatted with.

The Bible school we attended is a very intensive place both spiritually and academically.  I was also working in the cafeteria to help pay my way, the leader of several student groups, and participated in other extracurricular activities.  To say I was busy would be an understatement.  I would notice Clark Kent (the nick name I assigned him because he looked so much like Superman’s alter ego….right down to the superman curl) as we passed by one another  but he never talked to me.  In fact he was kind of rude.  Oh well, rude people can be cute too, I thought.   A couple of weeks went by before we spoke again.  I was sitting at a table in the cafeteria when Clark Kent ran up to my table (literally ran….he was always running everywhere back then.  It was like God had taken the energy of three people and stuffed it into his body) “Hey I heard you have a car.”  He says to me.  No preamble, no “Hi” just straight to the point.  “We are having a birthday/ going away party for my friend R.  You are invited.” “Thanks. I guess I could come” Clark then stood on a chair and announced to the whole cafeteria “Hey she’s driving to the party.  You can all catch a ride with her.”  “I don’t even know where I’m going”  “Oh yeah.  My friend K will ride ride with you and tell you how to get there” Then he was gone, off running again.  When I got to my car 20 people were waiting for a ride.  Did I mention I drove a 2 door Toyota Tercel.  I think we crammed about 7 or 8 people into it.  We got lost in the middle of nowhere on the way (this is before the days of GPS). The person who had been assigned as my navigator had only been to the house in question once, in the dark.  By the time we arrived at the party I was pretty ticked with Clark Kent.  I could not believe that Superman would ever put anyone in the predicament that I had found myself in. To top it all off, he then proceeded to completely ignore me for the first half of the party.  The second half of the party he flirted outrageously with me.  I was completely baffled by the time I left.   I told my roommate the incredibly frustrating evening I had.  She then changed his nickname from Clark Kent to Ice-Man.

Ice-Man and I had many similar meetings.  I never knew what to expect from him.  Sometimes we would have these intense deep discussions about everything from God to starting businesses.    Other times he was flirtatious and others he completely ignored me.  I was so busy I really did not have time to think on it too much in the beginning but by Christmas break I had sworn him off.  Anyone that was so fractured was not for me!!  I enjoyed a wonderful break.  I signed my car over to my sister because I was a poor college student and could not afford the payments anymore.  That left me to take the bus back to college (500 miles in a bus alone as a young, single woman is not an experience I would recommend to anyone….just saying).  When I stepped off the bus, completely exhausted and frazzled I was suddenly swept into a bear hug.  Before I could get a good look at who had me, I was swept off my feet and swung in a circle.  I looked up and saw Ice-man had me.   According to eye witness reports the whole bus scene was incredibly romantic.  I was in such complete and utter shock I didn’t notice.  I mumbled something about “good to see you too”, got into my friends car, and sat with a shell shocked expression on my face for 30 minute drive back to campus.  I could not reconcile the man who had just swept me off my feet (literally) with the man I had left a few weeks before. The same one who would not even look in my general direction, much less hug me. Over the next few weeks Ice-man completely disappeared to be replaced by someone entirely different.  Everywhere I turned, there he was.  I could not get away from him.

One day during this time I was walking on campus and literally everyone I passed hugged me.  Don’t get me wrong, I’m a social kind of girl but for every, single person to show me this much attention was unusual even for me.   I was simply too busy to pay any real attention to it.  I continued my day and ended up at work.   As I was standing in the window of the cafeteria, washing dishes, I noticed everyone pointing above me and laughing, many came around and hugged me.  Now I’m not the brightest bulb in the pack but even I knew something was up.  I walked around to the front of the window and saw this flyer posted above my head.

These were posted all over the campus!!!  EVERYWHERE!!!  I was so busy that I never noticed them.  Never accuse Mr. Right of half measures ;-)

So this is the beginning of our story.  Next post I will explore our dating and engagement year.  Thanks for reading.  Don’t forget to leave your comments on this blog to be entered into my 6 month blog birthday giveaway. 

The First Steps in a Journey

It is said that a journey of a thousand steps begins with the very first step.   That being said, our journey has begun.   “What journey?”  You may ask.  Our homeschooling journey!!!  Yes I know I am not your typical homeschooling momma.  Yes I know I said I would sooner walk over the hot coals of hell barefoot than homeschool our boys.  Yes I know I am the least organized person I know.  Yes I know that I said if I ever even thought about homeschooling my boys you should call the men with the white suits.  Well today I publicly eat  all those words, every one of them……well I may still be the least organized person I know but other than that I eat my words;-)

As some of you know, I was homeschooled for my high school years.  It was not a great experience for me.  I had been super active in school before that: chorus, drama,  band, debate team, tutoring, honors classes, etc.  I loved school. I thrived on the competition that school provided me.  Being pulled out of that environment and placed in a homeschooling one was not the right choice for me.  The experience honestly tainted my view of the entire concept.  For the past 20 some odd years (no I will not get more specific than that….a girl has to have some vanity ;) I have been adamant that my kids would stay in school no matter what.  I didn’t care how many hoops I had to jump through or how many ways I had to bend my kids would stay in school.  Now this works great if your kids fall into the NT (neuro- typical) group of kids.  It even worked great for my spectrum kids…..up until I moved to small town TX.   Since moving here nearly 4 years ago it has been a very different story.  Don’t get me wrong I love our town!!!  As a matter of fact, it nearly broke my heart when we considered moving to a different school district.  But four years of continuous battle to get my kids the accommodations they needed in the classroom had taken its toll.  What started out as friendly discussion had ended in a very bloody battle.  Friendships were lost, relationships damaged, careers jeopardized, and some of my boys’ education were being affected by the fall out.  I wish this was even a slight exaggeration but it’s not.    My husband and I knew sending some of our boys back was just not an option.  Private schooling is expensive when you have the number of kids we do.  Also private schools do not fall under the same federal guidelines that public schools do.  They are not obliged to follow the IDEA or many of the other laws which govern the public system.   That is not to say that there are not great private schools out there for special needs children but we were not finding any that were within our budget constraints. 

Homeschooling I had dismissed out of hand.  First of all I am not a very organized soul.  In fact I tend to fight whatever organizational binds that are placed upon me. Blame this on my artistic nature, or ADD, or rebellion….I don’t care which it is.  The fact remains I refuse to buy the same scented laundry soap twice in a row.  I get bored with the first scent before it is even done.  Finding things in my cabinets and closets is a constant adventure for my husband.  I have more than once heard “Kristine would it really kill you to put the salt in the same place twice in a row?”  Yes organization is not my cup of tea.  I know this is a huge handicap when considering homeschooling.  I understand myself enough to know that no matter how good my intentions if the system was dependent on me to be organized we were doomed before we even started.

Another strike against homeschooling was the very different needs of each my boys.  I understand all kids are different but with four of mine on the autistic spectrum I was unsure of my ability to meet each of their needs myself when a team of professionals was unable to do it in some instances. All of this added to my already prejudicial view of the entire experience pretty much ruled homeschooling out completely for our family.

That only left moving to another district.  But this again was not a good solution.  We are established in our town.  We have friends and more importantly are boys have friends.  Change is not easy on any child but my spectrum guys have a really hard time establishing relationships.  Paul is entering middle school.  I just did not know how well he would be able to reconnect at this stage in the game.

Then one day a good friend of mine shared a homeschooling solution that she thought may work for us.  It is an option that is available through the state of TX.  My boys have access to online classes, one on one teacher interaction, SPED specialist, and gifted programs.  Everything!!  It is perfect for us.  It has its own structure therefore it is not dependent on only me.  It gives me the freedom to work with my boys but the support that I need.  It is a good compromise. 

This year I am only doing three of the boys.  The program starts in 3^rd grade.  My youngest is only in 1st therefore he is not eligible.  My other son is going into 3^rd.  However, he has a very good, established relationship with his SPED teacher.  He is further on the spectrum than my other guys.  I was not comfortable doing him the first year.  Let me work out the kinks and maybe we’ll shoot for next year.

So there it is, my big news.  I am excited about this new direction.  I know in my gut it is the right one.  Any and all prayers are definitely welcomed.  If the past is any indicator, God will use this experience to grow me even more than my boys.  Remember to leave your comments on this blog to be entered into the giveaway.  I am posting a picture of the gift basket, sans the chocolate.  That I’ll wait to buy closer to the giveaway.  Lots of love to each of you, my friends.-Kristine

A Glimpse of Well Child Visits...done Skiff style

This week is well child visit week here at the Skiff’s.    Our doctor does not see more than two patients in a family on the same day so today and the next two days are Doctor Days.  Doctor Days are approached with the planning and precision of a war campaign in the Kingdom of Skiff.  From what time of year, to order the children’s appointments are stacked in, to what time of the day.  It is all very thoroughly thought out.  I always try to get them in around 10ish; this is prime time in the Skiff universe (after breakfast but before lunch…with five BOYS everything revolves around food ;-).  The appointments must be scheduled in the summer, therefore avoiding schooling conflicts.  Benny and Paul are always scheduled together, then the twins and Sam gets his very own special day (he isn’t on the spectrum but he has auto immune issues making his appointments take longer)

The morning of the appointments it’s a mad dash to get everyone together and out of the door on time.  “Does everyone have clothes on?” “Yes that does include pants!”  “What do you mean you can’t find your shoes? You were wearing them last night!”  “No somebody did not break in and steal your shoes!  Go find them.”  “Is everyone dressed? _________, why don’t you have pants on yet?!?”   “Everyone in the van now, we only have ten minutes to get there (The doctor’s office is exactly 7 minutes from our house…..yes I’ve timed it. Don’t judge me :)”  “You can put your shoes on in the van.”  “_______, how did you manage to get ketchup on your clean shirt, we had pancakes for breakfast…..never mind I don’t want to know!  Just change your shirt in the van”

After a harrowing 7 minute drive to the doctors, I’ll spare you the scary details, we arrive.  As we’re running into the office, I will notice one child still is not wearing shoes but instead has them dangling in his hands, this happens EVERY time without fail and is never the same child twice in a row.  I sit the offending child in a chair to finish shoeing his feet as I book it to the sign in desk with .05 seconds to spare.  You may be thinking, why don’t you get there earlier?  Believe me this is the BEST possible plan.  Any earlier would mean an extended waiting room time and that just isn’t fair to the general population.  Almost immediately the two with an appointment are called back.  The nurses double team the schedulee’s on their vitals as I herd the other three back to the examination room.   The view in the examination room becomes comical as my five boys, the doctor, two nurses and I squeeze into the tight space.  From the outside I’m sure we look like sardines, all be it very attractive sardines, crammed in a can. Every time one person turns the other have to shift to make room.  Yes I’m sure Abbott and Costello would have had all kinds of fun with this situation.  The doctor then attempts to ask me the relevant questions to child being examined which I attempt to answer while trying to handle the other four children.  By this time at least one is always in a meltdown.  It seems this much close physical contact is not preferable for kids on the spectrum.  Yes it all kinds of fun.  I do believe my doctor deserves combat pay on the days we are scheduled.  Finally it is over; everyone gets a sticker and a lollipop and we head home.  Wash and repeat the next two days and follow up in a year. 

There it is friends, your glimpse into my always glamorous day.   I hope each of you is enjoying your summer.  Remember to leave a comment on my wall to be entered into our fabulous give away.  I’ll post a picture of the fabulous basket on my next posting.  Lots of love-Kristine

A Glimpse of a night long ago

I had planned to make this a collection of funny anecdotal stories from the summer thus far.   I will still write that blog, maybe tomorrow, maybe next week.    Tonight I don’t feel like laughing anymore.  Tonight I am so very sad.  I read the news of Amy Winehouse’s death on Facebook.  I am not a particular fan of Amy Winehouse’s music.  I probably could only name one of her songs.  I like much of the world’s population, caught glimpses of her on the covers of the tabloids in the grocery store checkout line.   I can claim no personal or professional relationship.  In fact my life is not directly affected by this in any real way.  Yet I feel a deep, sad connection to her story.  This blog comes from one of the darkest nights of my life.  This blog is about the night I tried to take my own life.

It was a bad day.  If I was to rate bad days on a scale of 1 to 10 (1 being mildly annoying and 10 being horrendously, world endingly terrible) I would rate this one an average 5 or 6.  I had had worse days in my 15 years. I had had better but somehow this night I just could not stomach another average 5 bad day.  Somehow this night when I looked at my life I saw a never ending line of fives, sixes, sevens, and eights marching in front of me.   I looked at the hopeless, never-ending marching parade and I went to the medicine cabinet.  I took anything I could find in it, my parents didn’t do the whole “drugs” thing so there wasn’t a lot to choose from.  What was there I took it all, including the entire unopened 100 count extra strength Tylenol, a bottle of peroxide and whatever else shoved in there.  I was so done. I was so over all the pain.  I didn’t want help, I didn’t want advice, and I didn’t write a suicide note.  I just wanted out. I just wanted oblivion.  I just wanted not to hurt anymore.  I spent a miserable 14 hours on the bathroom floor retching.  My mother came to the door once and asked if I had taken anything to make myself sick.  I told her “No. I only have a stomach bug.  I’ll be fine. Go on to bed.”   She did.  I don’t blame her for this.  My mother and I did not have the traditional mother daughter relationship…but I’m getting ahead of myself.   I lay on the bathroom floor, in my own vomit (I didn’t even have the strength to make it to the toilet anymore) and I felt the presence of God in a way I can’t describe.  I had a relationship with God.  I had felt his presence many times but that night it was different.  “Do you want to die?”  The question screamed in my head.  “YES!!!” I screamed back.  Fifteen minutes and much retching later the question came again “Do you want to die?” “Yes.”  Another ten or fifteen minutes went by.  Time is relative when you’re lying in a pool of your own vomit.  “Do you want to die?” “What to do you want from me?!?  LEAVE ME ALONE!”  “But do you want to die?” the question came again.  “Yes…no….I don’t know” That was it.  I had survived the night.  I got my mess and I cleaned up and spent the day burying myself in books.  We didn’t have a TV so this was as close as I came to vegging out.  Every time I stopped reading the same question pounded in my head…..Did I want to die?  I continued to ignore this in every way I could; putting off the inevitable confrontation with my choices.  I am a master procrastinator so I was able to escape myself most of the day.  Finally there was no putting it off any longer.  “Do you want to die?” I stopped and thought a long time.  “No I don’t want to die.  I just want the pain to go away.  I don’t want to feel this anymore.”   Never again after that day did I even think about killing myself.  I realized something very basic in that moment.  I truly did not want to die.  I needed to heal.  This is not the end of my story.  My parents did not know about my suicide attempt but they did know something was very wrong.  They sent me to live with my Grandparents for a while.  It was the best thing they could have done.  I needed the solitude, the quiet and honestly the pampering that they gave me during that time.   My grandparents didn’t know what had happened, to this day they probably don’t.  But they gave me a deeply needed respite.  For a few months I was able to just be.

I don’t know what happened to Amy Winehouse.  I don’t know if she took her own life or not.  I am very sorry for the loss of the people who loved her most.  No one can fill the whole that someone leaves when they go.  I don’t share my story lightly.   Some of the wounds and pains that needed healing in me took years and much counseling.  I share this only because maybe, just maybe my story will make someone reconsider an irreversible mistake.  If I had died that night I never would have experienced the greatest moments of my life.  The moments I could not see while I was in that dark, dark place: a wonderful summer when I was 17 and I made lifelong friends while living at the beach and working in a mission, going away to college, falling in love with my husband, getting married, having my five beautiful baby boys, learning and loving all the differences God has given each of them, moving to TX and meeting many more beautiful friends, so many, many good things that I cannot even begin to list them all.  My life has been so very full of wonderful, awesome things.  My life has had some hard roads and painful loss but in walking these hard places I never once thought about ending my life.  Instead I cling to life in the good, the bad and all the in between.  Life is so very precious.  Thank you God for your grace.

A Glimpse of a Give Away

Anyone who knows me knows I love to host a party.   I love cooking a massive amount of food, cleaning (ok maybe I don’t love the cleaning so much) and decorating my house in preparation.  I love to watch people as they come in with whatever stress has been in their day and then watch as they look around, take a deep breath of the party scented air and then slowly relax.  I love to hear the laughter as people swap stories and I love to laugh right along with them.  I love to look around the house after everyone leaves, see the empty glasses, dirty plates and drooping decorations and have that feeling of deep satisfaction that comes over me knowing that a good time was had by all.  Yup I LOVE a good party. 

Next month will be the six month birthday of this blog.  When I first started I had no idea just how much I was going to learn, how many new friends I would make, or how many old friends I would reconnect with.  Indeed I had no idea just how much I would fall in love with this new form of communication.  Maybe it’s my closet narcissism peeking out but I have decided this joyous occasion deserves a celebration!!!    I thought long and hard about how I could best turn a virtual party into a real world party short of flying everyone to my house (which though I would to do it. It’s just not feasible, or so my husband says ;).  Then it came to me.  I’ll have a fantastic giveaway to show how much I appreciate every one of you. 

So here are all the fun details.  The prize is a fantastic gift basket.  Some of the cool goodies included are the book Look Me in the Eye by John Robisson (a fantastic, fun read), a GloDowg candle (my very favorite.  Their scents last and they burn forever. Not to mention they are made by one of my favorite people in the world),  full size  Bath and Body Works Lavender Vanilla bubble bath, lotion and body spray (this will relax  you on the most stressful of days and a box of Godiva chocolates.  Yes guys I know this basket seems a bit on the feminine side but if you win you can give it to your wife, girlfriend, sister or momma and I PROMISE you that you will be golden for at least a week ;-)

How do I win this amazing gift basket you may ask?  It’s simple.  Just leave a comment every time you visit my blog over the next month.  Every comment you leave I will enter your name into the drawing basket.  On August 28^th, exactly six months to the day that I started my blog, I will draw a random name and announce it.  The more times you comment the more times you will be entered, the more chances you have to win.  Easy as pie!!!  Just to be clear the comments have to be left on my blog.  Although I love all the comments on Facebook and Twitter only the ones on the blog itself will be counted.  To comment on the blog is easy.  Just type your comment in the post a comment box and then click which profile you wish to post under in the “Comment as” box.

I am so excited about our upcoming celebration.   I’m already picking out my party dress ;-)  Have a great day friends.-Kristine

A Glimpse of the harsher truths

I was so excited.  We were going out to eat, at an actual restaurant….the sit down kind, for the first time in at least a year.  I had all seven us looking our shiny best as we walked into the restaurant.  This was going to be fantastic!!!!  About 15 minutes into the meal one of the boys began to wail.  I tried giving him a cracker but he was not to be distracted.  I leaned over to my hubby and told him I would take this one outside to the van and he could stay in and eat with the other boys.  I promptly picked up the screaming child and exited the eatery.  To say I was disappointed would be an understatement.  I was so looking forward to a nice meal that someone else cooked and cleaned up after.  With all of our kids being so young (they were 5, 4, 3, 3 and not quite 1) this was a rare occasion.  My husband was disgruntled when he returned to the van.  “Why’d you just leave like that?”  “Because all the other people in there did not pay good money to hear our baby’s cry throughout their entire meal.  It’s called being a responsible parent.”

It’s time to grab your life jackets friends and batten down the hatches.  I’m about to steer this blog into troubled waters.  Ok is everyone buckled up and holding tightly to the railing?  Here we go------o…….

My last blog was about one of the biggest lessons I have learned as a parent, learning to let go of my need of others acceptance and approval and just doing the right thing for my child.  Today I am going to tackle the opposite side of that coin. I call it considerate, responsible parenting.    I did not want people to get the wrong idea when they read my last blog.   Whenever possible I try to be considerate to the other people who surround me.  There are the rare occasions, such as the Wal-Mart story of my last blog, where a public meltdown is unavoidable.  I was dealing with a deeper heart issue, my NEED to have others approval and acceptance above and beyond what was right for my child.  That in no way negates the need for considerate, responsible parenting. 

I have had to say no more often than I have said yes as a parent, even when it has broken my heart.  This past school year my kids got strep on the week three of them had their ONLY field trip of the year.  All year the teachers had been pumping them up for this day.  They were on antibiotics for 24 hrs but I knew they would still be contagious to the other children so I kept them home.  It broke my heart because they were looking forward to this day ALL year. There were tears, lots of tears, that made me feel like the lowest of the low creatures alive….somewhere below pond scum on the charts.  However, I knew it was the right decision to make as a considerate parent.

I have spoken of some of the lowest points for me personally and some of the heights.  I am by no means a perfect standard to judge by.  I have messed up frequently and will make many more mistakes in the future.  Not because I desire to but because I am not perfect in any way.   That being said, many women come to me with questions and looking for advice.  I guess they figure that if you have enough kids you’re bound to learn something along the way or maybe they figure with this many kids I have probably made every mistake there is and they can learn by avoiding my example.  Either way I field a lot of questions.  “What do I do?!? Johnny pushed a popcorn kernel up his nose.”    “Why won’t Katie potty train?”  “What Dr do you use?” etc, etc...You get the point.  Many of these questions have simple answers. “Have Johnny blow his nose as hard as he can.  If that doesn’t work go to the pediatrician.”    “I’m not an expert but I would say it’s probably because she’s not even a year old yet.  I hate to tell you but you have a lot more diapers in your future.”  “Pediatrician or Developmental Pediatrician?”    Unfortunately some of the advice I have to give is not so popular.   These lessons are the ones that were hardest won for me.  My last blog I addressed one of those issues.  Today I’m addressing another.  Being a responsible, considerate parent often means being selfless.  Parenting is the hardest job you will ever do.  It will take everything you have and then it will demand more.  At that point you will change, you will grow.  You will give up who you are to become who you are meant to be.  I know this goes against all that pop culture will teach you. Today you are taught that you DESERVE to have things your way and that you NEED to hold onto yourself above all else.  Unfortunately the ones who pay the price for our self-indulgence are our children.  Then we wonder why our children grow up to be self-absorbed and selfish.   The answer is simple: They learned by our example.    This sounds very harsh and I am sure will not make me many friends.  But that does not change the truth.  Sometimes you won’t get to have the dinner you have been looking forward to, sometimes your kids will cry because life isn’t fair and they missed their field trip, sometimes you will have to be judged by others because you choose to do what is right.  Sometimes you will have to be unpopular (I could give a class on this one;)

Now for the good news: Being a parent is the most AMAZING ride you will have in life.  It’s way better than the biggest roller coaster or the tastiest chocolate.  Every sacrifice you make will be small in comparison to privilege of bringing a little life into the world and guiding that life into adulthood.  There is NOTHING better.  Friends before I sign off I have to say I am blessed to be a part of your lives.  Lots of hugs-Kristine

A Glimpse of not giving a damn

Standing in line at Wal-Mart it was impossible not to notice the flustered young mother a few patrons ahead of me. Her hair had been thrown up in a sloppy ponytail, dark purple circles under her eyes attested to too many sleepless nights. She had a baby on each hip and more in the cart she rocked back and forth in a vain attempt to calm the crying child inside. Crying is not an accurate description. No what this child was doing was more like a cross between the cry of a feral cat and the wail of a siren. She frantically tried everything to quiet the child: singing, counting, shushing, babbling nonsense. None of it worked. The mother looked on the verge of tears herself. Directly behind her stood your average professional yuppie dressed in the yuppie weekend uniform: khaki shorts, polo shirt, and deck shoes. He made disgusted noises at the mother’s vain attempts to quiet her wailing child. Finally he looks over at his companion, dressed in the identical outfit only her polo was pink instead of blue, and loudly states “If that was my child I’d beat his butt and then he wouldn’t act like this in public.” The flustered, young mother turned three shades of red. She turns and quietly whispers “I’m sorry. He’s autistic and he doesn’t handle Wal-Mart well. Usually I leave him home but my husband had to work and we needed formula and diapers.” The man’s ire was temporarily assuaged and the mother finally checked out.

If you haven’t already guessed I was that mother. For several years it was almost impossible to leave the house without having a similar situation happen. Everywhere I went I was judged as a mother. Some people would just roll their eyes, others would actually try to be helpful and offer advice, and some were like the man in the above story. For the most part we stayed home. Even going to relatives was difficult. Family members did not always understand or accept that we were dealing with something more than discipline issues. All in all, I was judged by so many people. I felt compelled to explain my child’s behavior because then it wasn’t my fault. Then people looked at me with pity instead of judgment. “You poor dear, this must be so hard. You are doing a good thing” It made me feel better about myself. Then one day I finally came to understand something very important: It didn’t matter what anyone thought!! Not the guy at Wal-Mart, not the waitress at the restaurant, not the guy at the gas station. It wasn’t their business why my child acted the way he did and I certainly did not owe them an explanation of his behavior. It didn’t matter whether or not my family agreed with the diagnosis or if they thought my child’s “issues” were because I did not spend enough time with them (yes a family member actually did tell me this….me the stay at home mom with no car). What truly mattered was that I was doing what was right for my child. That I was doing everything in my power to be the mom to my child that he needed. I call this my lesson in not giving a damn.

I know that can sound arrogant but that isn’t the way I intend it. For me it was freeing. It was so freeing to stand in Wal-Mart and hear the snide comments and really not care. It was freeing when I got the emails with the newest “causes for autism” and all the things I should be doing differently to just delete them without feeling guilty. I no longer had to explain, I no longer had to apologize, and I no longer had to feel guilty or sorry. I no longer wanted people’s approval or pity. So very often, as parents of special needs children, we make it about us. I know I did. I felt embarrassed by my child’s behavior, I felt judged, and I felt pitied. But this isn’t about me. It’s about my child. It is about finding the best treatment available for my child (whether others agree with it or not). It’s about being the parent God has called me to be to my child.

One of the first pieces of advice I give to parents when given a new diagnosis for their child is this: This is not about you. It will affect you. It will change your life but this diagnosis is not about you. It is about your child. Your extended family may never understand, friends may be uncomfortable around your family and not know what to say. But it is not your job to make them understand. It is not your place to make them comfortable. All that energy you expend trying to get others understanding is wasted. This advice was hard won. It came from oceans of wasted tears. This journey, this amazing life changing journey takes all your effort and energy. Your child feels it when you are ashamed of them or embarrassed by them. One of the most important things you can do for your child is to accept them, really truly accept them as they are. Once they feel this from you they will be open to the other steps and therapies you will try. I have four children on the spectrum and one husband. This journey has been different for each of them. It has been a learning experience for me. God has used this journey to change me in so many ways and I will be eternally grateful for it. The first step for me was this one, this very hard one. Sometimes it is great to just not give a damn.