Please Don't Tell me Autism is a Gift

Every time I sit down to write, I often already have a positive message to end on in mind.  I don't have that today.  Today I am sad, I am angry and I am coming from a place that I don't often go: a place with walls papered by self-pity and lighting dimmed by exhaustion.  We have all been there, but of course, we try not to live there.

I read story after story that highlight the aspects of having a child with autism that are positive and uplifting.  I have written many posts that do the same.  I think these stories are important as they help to spread awareness and acceptance, they celebrate our children holistically, which is great because our children deserve to be celebrated.

I wonder, though, if sometimes we sugarcoat or put a positive spin on reality to make ourselves feel better or maybe to avoid coming off as a victim.  After all, bloggers who have written more negatively about their children with autism are often scrutinized and demonized.  Another reason I usually stay away from the negative: I don't want my child (or others with autism) demonized or people to think any less of him.

As positive as I try to stay, there is a reality with which we have to contend.  That reality usually gets to make a short appearance in my blog in sentences like "Of course we have our challenges." or "And even though he struggles..."  Anyone affected by autism knows those phrases are emotionally charged.

But I started thinking.  People outside of our household, people outside of our community, must all be scratching their heads and wondering if our children and their autism are so great and so gifted why are autism parents so vocal about needing help and advocating for their children?  Why would a savant be labeled disabled or need to receive special services from a school district?

Autism is a spectrum disorder.  No two people on the spectrum are the same.  Many of our children are not savants.  Many of our children are not even on target with their development for their age.  Many of our children will live with us for the rest of their lives.

So, please, don't tell me autism is a gift.  When my child has been screaming every thirty minutes all day long and we have to go to the store and he screams at the check out, the cashier telling me he'll be okay and will be great with numbers when he grows up is NOT what I want to hear.

When I look into my son's eyes when he doesn't understand his surroundings and his anxiety and fear are palpable there is nothing in this world I would not do to take that fear away.  You cannot look into his fearful, panicking gaze as he is shaking and cowering from everyday stimuli and tell me this is a gift or an enlightening experience.

Please don't tell me his autism is a gift as I take his little sister to the hospital for a concussion resulting from an impulsive outburst that he could not control.

When I see his older brother with tears in his eyes yet again because his little brother doesn't want to play with him or has lashed out at him, I don't accept that this is a gift.  He is hurting and his needs are put on the back burner everyday, I see no positive in that other than I'm hopeful it will build character and instill compassion in him.

As I bang my head against a wall just trying to get my child an education like everyone else is entitled to, I wonder if outsiders know just how "challenging" it is.  We are in a district in a state that won't even provide classes for preschool children with special needs.  So I found a private preschool that would take him, but he has so much anxiety about going every morning that he screams the whole way there and as his teachers carry him in.  I have a laundry list of therapies that are medically prescribed that I have to work around the clock to access for our child.  Once we finally have established providers we drive and we schedule and usually have some type of appointment everyday.  These are not groundbreaking therapies that are going to have my child doing quantum physics or painting masterpieces, these are necessary to get my child to function high enough to dress himself and feed himself and to allow him to tolerate being in a room with everyday noises.

And then there is the loneliness.  Please don't tell me autism is a gift when my child and his siblings are no longer invited to birthday parties because parents don't want one of my child's meltdowns to ruin their kid's special day.  When I stop having friends outside of the autism community because other people don't want to hear about autism and how it is consuming your life, it doesn't feel like a gift.  Unfortunately as much as it consumes our lives, it consumes our conversations too.  And that doesn't make for great girl's night out conversation.  I can't say I blame former friends for throwing in the towel, but that doesn't make it any less lonely.  The gift that keeps giving.

I know some will be offended by this post, but just as my opinion is that autism is not a gift; you, of course, are entitled to a different one.  For me, autism is exhausting and I feel like every minute of everyday is spent trying to break my child free from the anxiety that consumes him.

Please don't tell me autism is a gift.  My child is a gift; his autism is a disability.    

Giving Fear the Finger; Moving Forward

One thing I have noticed most about the special needs community is how overtaken we as parents are by fear and anxiety.  We worry about every aspect of everyday, not because we want to, but because there is so much going on in our lives that validates worrying.

We of course talk about the bigger things.  We worry about will happen to our special needs children when we are gone.  We worry about services and our children's schooling.  We are terrified of the next regression or the next problem behavior that could be lurking right around the corner.  We fear to have more children, because they too might have autism or another condition.

But I have also found myself engulfed by fear during our everyday lives.  I do not speed and I always use my turn signal because God forbid we get pulled over with my autistic son in the car.  It would be a nightmare he would scream and be overtaken by anxiety.  The officer would most likely be clueless and it could escalate into myself and my child being taken out of the vehicle or questioned or worse.

I fear every time we go into a store or a new place that there will be something that will upset him.  A child crying or the store testing their alarms (and yes that has happened, he was traumatized for months and always associated all Walmarts with that terrible sound) pushing him over the edge and causing a panic attack or meltdown from which he cannot recover.  Or even worse causing a traumatic sensory association that will stick with him for next forty outings we attempt.

Every time we lose a service or get waitlisted for a therapy I fear regression.  I fear skills we have worked so hard to master could be lost.  I fear without therapy he will be "delayed' in some areas much longer than he would if we were getting the right services.  I fear every move for this reason.

I fear ever being in a car accident with him in the car.  His brother once ran their power wheels into a tree while he was in it.  He would not get anywhere near the power wheels for months after that.  Once we ignorantly went through a carwash with him in the car.  It took a week and a lot of therapy, a lot of tears and screaming to get him back into the car.  Can you imagine if we were in a car accident?  I fear he would never get back in a car without severe anxiety and panic attacks.

Every time I get into the car without my children, I worry that I could be in an accident and die and my children would all have it so hard and my son with autism would fall apart and regress so far into his own world that he could never be saved.  Every time my husband gets deployed or has to go overseas for work I fear something could happen and my children would be without a father and a provider and we would lose our health benefits that mean so much to my son.

Every time I hear a siren and my son is not with me I panic and my heart jumps into my throat.  Is it him?  Did he get out of the school and get hit by a car?  Should I even send him to school if I can't be with him constantly to make sure he is safe?

I constantly worry about the medicine, the foods, the chemicals to which I expose my children, especially him.  I cried before we gave our youngest her one year vaccines, because even though our son's autism had nothing to do with vaccines there is this culture of fear surrounding our special needs children due to the unknown.

I don't know about you, but there are days when I want to stay in a bubble with my family.  Days when I just feel paralyzed by the fear and anxiety.  But if I let that fear overtake me, I cannot live and maybe even worse my children cannot live and experience the world around them.  Unless we move forward from the fear we will miss out on all of the amazing moments and experiences we have everyday with our children.

Even though I worried about being able to adjust to having a third child with so much on our plates and I worried (and still sometimes worry) about our third being more likely to have autism; we moved forward and I am so thankful we did because she is an absolute joy.  All of our children have brought us so much happiness and I refuse to get so bogged down by fear that I don't get to experience that happiness.

To the Occupational Therapist Who Set The Bar High

We met you before we had a diagnosis.  You came to our house and worked with our son on what we thought were just delays and sensitivities.  Upon seeing some of your first sessions with him, I questioned your methods and your ability to help him.  I remember you sitting outside with him on a sunny day and trying to get him to touch finger paint.  I remember him screaming and nearly hitting his head on the brick patio.  I wondered why it was important for him to be able to touch finger paint.  But the more I watched you and listened to you the more I learned about the skills he was gaining to be able to function in this world.    I remember he was over a year old and he still would not pick up food to feed himself and then once you finally coaxed him into picking up food without throwing a fit you taught him at nearly two years old how to bite off pieces of food so his sandwiches would not have to be cut up.  You battled him to get him to drink out of more than one color of sippy cup and eventually we were finally able to give him a different color without a forty minute meltdown.

While working with him you saw me at my worst.  I did not know you well and often would open the door with tears streaming down my face from utter exhaustion and frustration.  You always encouraged me and lent a listening ear when I needed to vent.  You always offered new ideas and different methods we could try to help him overcome some of his most challenging behaviors and delays.  You walked into what often looked like a disaster zone of a house and never batted an eye.  You occasionally let my oldest son participate in the therapy session too so I could lay down for thirty minutes after another sleepless night.  While we were working through some of our darkest days and longest nights you showed up every Thursday and showed us progress and gave us hope.

You were there when we finally got his autism diagnosis and helped me work through the emotions that came with it.  We took comfort in the fact that we had already started interventions and were already seeing a positive response to therapy.

Most importantly, you cared for him.  You were as excited and as proud as me when my son would make strides or reach a new milestone.  You taught me how to help him and how to continue to develop skills and make transitions easier, for which I am eternally grateful.

We had to move away from you but there are reminders of your work everyday.  When he uses a spoon to eat he quietly reminds himself "Don't flip".  Whenever he sees little Chef Boyardee containers of ravioli he says "Amy gave it".  When he is stressed or overwhelmed with his environment he asks me to count on him (using the joint compressions you taught me to calm him down).  Whenever he sees a textured therapy ball he remembers you and excitedly talks all about your blue "spikey ball".  The little boy who was terrified of baths and hated water touching his head now showers regularly and loves it.  The little boy who was perplexed by playground equipment can now climb, jump and swing with the best of them.  The little boy who could not go out in public without throwing himself on the store floor or running away now goes shopping with me all the time and holds my hand as we walk to the car.

We still have challenges, we still have a long road ahead, but because you cared we feel equipped for the journey.  Thank you.

Why We Will Never Stop Going Out in Public

I see posts and articles frequently about public outing nightmares with children with autism.  I relate to almost every single one of them.  I have noticed that most of them aren't about a meltdown at Disney World or the park, it's almost always the grocery store or some other mundane outing that isn't a nice to have, it's a must have.  We all have to buy groceries.  We all have to drop our children off at school.  We all have to go to medical appointments.  The list of have-to-haves goes on and on.  Lining up childcare every time we have to do one of these things is just not realistic and can get very expensive.  Not only that, but some of our children have such severe separation anxiety that leaving them with someone is equally as traumatic as an outing.

We have the issue that anytime we go into a store, our son gets highly anxious about the loud speaker and the beeping at the registers.  So much so that he usually throws things when it's time to check out, or covers his ears and cries when they use the loud speaker.  He also gets very upset if there is another child crying (even if that child is three aisles over) and it can send him into a tailspin from which we cannot always recover.

With all of these problem behaviors occurring frequently when we go out, people outside of our world might wonder why we ever go out with our children if it isn't completely necessary.  Why do we subject ourselves to the stares and comments that cut so deep.  Why don't we, for instance, leave our son at home with one parent and the other parent can take out the other two?  Why don't I always do my grocery shopping while all three children are at preschool?  Why do we attempt the park when we know the end result will probably be dragging a kicking and screaming child to the car?

I know our son would be perfectly content to sit in the living room and play with all of his favorite toys over and over again.  His anxiety would be next to nothing and his overall mood would improve.  When we were home sick last week with very few outings and next to no transitions our days were nearly meltdown free.  So why don't we homeschool, get a sitter for all of our necessary outings, and stop all of our therapies?  There are a few reasons we make the choice not to lock ourselves up inside the house and avoid the new and unfamiliar all together.

First of all, staying shut away is not an option in the real world.  If we expect our children to mature and learn coping mechanisms they need to practice.  If we expect them to be able to go to the grocery store and buy food for themselves someday, we cannot avoid noisy places all together.  We have to work through the experience, even if it does appear to be disastrous to onlookers.  Actually, sometimes our outings might look like disasters, but were ten times better than the last one and we bask in the joy of that progress.

Another reason we will never stop going out is because our children (both our neurotypical children and our son on the spectrum) deserve to have fun too.  Don't get me wrong, we plan our outings very carefully and generally try to work them so we don't have much waiting and to make it as predictable as possible.  But even so, we cannot plan for every circumstance and if we have to wait a little longer than planned or go a different direction, you might have to witness a meltdown.  But it's worth it.  It's worth it to me to chance that he might cry and scream because we are having to leave the zoo after we have already walked through it twice if the benefit means watching him jump up and down with excitement at experiencing a new animal.  It's worth it to me to get out of our house and see him have a better store outing than the last time or to see him try a new thing with his siblings by his side and enjoy it.

So there you have it.  We cannot live in fear of the next meltdown, otherwise our children would never experience the world.  We cannot hide our children in order to make the world feel more comfortable, otherwise no one will ever learn about or accept their differences.  We cannot stop going out anymore than we can stop living.  And we will never stop.

I'm Not Going to Lie: I'M FED UP!

I am going to try to keep this post from sounding like a list of grievances, but I can't make any promises.  I wanted to start this year fresh and have the most positive outlook for our future, but we are off to a rocky start and I'm mad.  I hope to turn this anger into something constructive and maybe putting it all out there will help.

First of all, to all of the rockstar ABA therapists in this God forsaken state: Thanks for Nothing!  So not only did I fight for your rates to not be cut by TRICARE, but I was quoted in one of the articles that painted the Pentagon into a corner, and kept your rates as is and helped to raise awareness on the importance of ABA services for military families with children on the spectrum.  Since then, one of you showed up late or cancelled nearly every appointment and has refused to listen to our input which pushed us to look for other options.  Another of you, said you would meet with us and could give us four hours a week and then called the morning of our assessment to tell me you would no longer be providing services to children in this area.  Another of you, accepted my son as your patient and had us switch over all of our authorizations only to call us the week we were supposed to start services to tell us you moved back to your hometown for personal reasons.  What??  Who are these people?  I am beginning to get the feeling that this profession has absolutely no accountability or standard.

To the great state of Alabama:  So how is it that you have one of the highest percentages of children with disabilities of any other state in the country and you have the worst services?  How is it that a state with so many special needs kids does not deem it necessary to have any type of special needs preschool education option?  How is it that you can still be dragging your heals on mandating health insurance in this state to cover autism services?  How is it that you can pay your high school football coaches over $100,000 a year and you can't pay special needs teachers and therapists enough to stick around?  Are the leaders in this state so hostile to education that they are blind to all of their shortcomings?  I told you, I'm mad.

To the Government:  Thank you for sending us somewhere where our child has regressed and we have no options for decent care.  I am so glad we did Occupational Therapy for years, only to be sent here where we were waitlisted and then had services for two months and then were waitlisted again...awesome.  I also appreciate when I call to ask how on earth it was okay for us to be moved here and beg your staff to give me more options I am told this area is just really lacking....really?  I hadn't noticed.  I could write an entire post on your military health insurance issues, and how children on medicaid are often getting better services than my child.  Or how providers at our potential assignments have told me already they aren't even taking on new TRICARE clients because TRICARE pays so poorly and inconsistently.

To our Pediatrician:  I don't know how your practice can continue to operate with how poorly it is run.  For me to have to call everyday for three weeks to beg for a referral for my child to be able to see a psychiatrist because you don't feel capable of prescribing needed medication is unacceptable.  And the fact that I only got through to talk to an actual nurse on one of our very worst days and I was only put through because I demanded it and you could hear my child screaming in the background is maddening.

To Everyone who claims my son is growing out of or will grow out of his autism and that this is just a phase:  My God, I hope you're right!  I don't know why I am worried about therapies and services at all, he just needs to mature, right?  I don't know why I have spent hundreds of hours traveling and in waiting rooms, I'm sure that has nothing to do with why he is verbal or why he can manage himself socially when in a preferred environment.  I am so glad he is four years old and can finally eat with a spoon without getting food all over himself or the floor, I am sure that just happened, forget the months of therapy and the countless meals of hand over hand help with utensils.  He's just a little quirky and hard headed?  Are we talking about the same child, because I'm talking about the child who I had to literally drag and carry out of the house this morning kicking and screaming because he had to go to school today, the same school he did totally fine at yesterday.  If you are not taking care of him 24/7 and witnessing the struggles day in and day out, if you are not an educator, if you are not a medical provider, you can keep your diagnosis and opinions to yourself.

All of this being said, in the worst state, with some of the worst providers and worst availability, we are fed up, but we don't give up.  If we had given up we wouldn't be trying a new school this semester, I wouldn't have spent hours on the phone this morning trying to find more providers, I wouldn't have fought that boy out of this house this morning so he could receive his district services, I wouldn't be pushing the baby's nap this afternoon so we could make it to Speech therapy without childcare.

And he hasn't given up, he has regressed in some areas, sure, how could he not?  But there is a light in his eyes that always shines bright and on his good days, he can do anything.  When he is surrounded by the things he loves and the setting is right, he can make gains and have conversations and say sentences I never thought he would be able to say.  His favorite movie to watch is Planes Fire and Rescue.  And even though I have heard the movie a thousand times, until he was singing the soundtrack the other day I never heard the words.  While I admit this post has been more negative than positive, I leave you with this:  He will still fly.

"Still I Fly"

There' a time in your life

When the world is on your side

You might not feel it

You might not see it

But it surrounds you like a light

Makes you stronger for the fight

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

Still I fly

Feel the wind all around

All the courage to be found

Who knows what's out there

I know I'll get there

Oh off into the sun

I know I'm not the only one that's

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

Still I fly

Still I fly

Breathe it in

I'm gonna shine

It's my moment

Gotta live and live it right

I'm flyin

Flyin so strong

I'm movin'

I'm movin'

I'm movin' on

Never letting go

Gotta learn to grow

Watch me as I touch the sky

Still I fly

Now I know it's what I gotta do

Find a dream that's new

Give it all I got this time

Still I fly

~Spencer Lee

To Moms from a Special Needs Mom; Regarding London

Dear Moms,

Yet another child with autism has been killed by their mother. This is such a travesty and could have been prevented. This hurts my heart to think this precious little boy was thrown to his death. The mother had sought psychiatric help after breaking down and was released and put back in charge of the care of her severely autistic child, which makes no sense to me. Our system is broken and there MUST be more services for children on the spectrum and more services to help families cope with raising children with autism and all of the challenges that entails. 

But as moms we can help too. If you know a special needs mom or you see one in passing at your child's school or you know one online, reach out to them. Having a child with autism can be a very lonely road at times and very isolating as you shy away from social gatherings for fear of your child's reaction. Holidays and family gatherings are hard and often avoided all together. Play dates are out of the question for most. Our children rarely have friends to invite to a birthday party. It is hard for us to go out with our friends or significant other, as finding someone capable of caring for our child is difficult. Reach out. Sometimes just being a listening ear could make a world of difference. This mother is not the victim, her child is the victim, but how many people did she come into contact with as she was spiraling down that looked the other way? Something to think about.

Sincerely,
Special Needs Mom

http://www.nbcnews.com/…/jillian-mccabe-was-overwhelmed-aut…

He isn't Rain Man, He's Superman; Getting Beyond the Stigma of Autism

I wish I had a dime for every time someone told me my son does not look autistic.  No, really, I would have a pretty hefty bank account.  I have heard it from strangers, friends and family.  I have actually heard more than once that I am lucky he does not act as autistic as some children with autism.  To some, this may seem like a compliment, but for me, I know too many amazing little people on the spectrum to think negatively when I hear the word autistic.  I see countless videos of my friends' children on the spectrum who are laughing and smiling and enjoying life.  Granted not every moment is easy or happy, but with or without autism all families have our challenging days and moments.  Before delving into the world of autism, my husband and I were guilty of believing these stereotypes as well.  We told ourselves many times that our son could not have autism because he smiled and made eye contact.  This is a very common misconception, which is perpetuated by pediatricians using that as the only criteria to diagnose autism and dismissing parents' concerns about their children.  We watched Mercury Rising and saw way too many similarities in our own child, but we comforted ourselves with the fact that our son talks, our son smiles, and our son looks at us.

Once we got the diagnosis, things started to make sense.  And yet the more I learned about autism, the more I saw that it presents differently in everyone affected.  All of my preconceived notions regarding autism flew out the window.  I used to hear people talking about a family with a child with ASD and I automatically assumed that family was sentenced to a lifelong hardship.  I thought "That poor mother, I am so glad all of my children are healthy."  

But now that the mother is me, and that is my son, and this is our family; this is what I want you to know: My child is not any less because he has autism, he is more.  Our days and nights might be hard sometimes, but that doesn't mean I'm miserable or always tired.  We don't shy away from our son's stims or obsessions, we embrace them and he amazes us everyday.  We are not in denial and are not ashamed to talk about autism, it is a part of him and despite its challenges, a pretty amazing part of him.

Anyone who has been around Evan for a small amount of time would not even know he has autism, if we are having a good day.  But make no mistake, years of intervention and therapy and hard work enable him to function as well as he does.  After about an hour, it is obvious that Evan is different.  Whether he is noticing a fly on the outside of the window from three rooms away and runs to talk to it or if he is rocking and chanting in the doctor's office to calm himself down; the differences are there.  I used to shy away from these differences, but lately I see how much it helps him regulate to rock or jump in public.  I would assume onlookers would rather he do that than lay on the floor screaming because he is overwhelmed by the fluorescent lights or the air conditioner humming.  So he rocks and I smile and we go about our day.  

While we were going through the process of getting a diagnosis, we happened to watch the movie Man of Steel.  After watching the following scene, my husband and I looked at each other and we were thinking the exact same thing.  Maybe this isn't a disorder we are dealing with.  Maybe our son struggles so much because he has a gift and does not yet know how to reign it in.  Maybe for Evan the world is just too big.

http://youtu.be/BRfpZD2ggx0

(Forgive the subtitles, it was the only clip I could find)

Imagine feeling too much, hearing too much, seeing too much, smelling too much every time you walk into a room.  That is life on the spectrum.  And as well as he does to cope with it everyday, there are days when all of it is just too much.  And those are the days we power through.  

But most days are full of deep pressure snuggles, tickles and a belly laugh that is out of this world, and pure joy when surrounded by the things he loves.  He is far from Rain Man.  He has autism and he is Superman.

When the Dust Settles

So we are in our new home in our new state and the dust has settled.  We do not yet have everything in place, but I am quite confident that anything not yet placed or hung will remain in boxes until the next time around.  We actually have multiple lamps placed around the house that are still without lightbulbs and not plugged in.  They will most likely stay that way.  Seriously, who wants to buy light bulbs you can't take with you when you move again in less than twelve months?

The children are adjusting to their new schools (or trying) and their new climate.  Our oldest is pretty miffed that he was told we would play outside here more and as of yet, it's been too hot and too buggy to enjoy the outdoors a whole lot.  Our youngest just turned one and she seems content and oblivious to the new surroundings.

And then there is our three year old on the Spectrum, who is trying to adjust but does not yet seem to grasp the permanence of our move.  He often asks to go see our favorite places in the state from which we just came.  He talks about going back to another home and seeing his favorite therapists and teachers as though we could hop in the car and be at his old school in five or six minutes.  All the while he is meeting new teachers and therapists, all whom he seems to like very much.  Liking his new teacher and classroom have not made drop off any easier, though.  He is fine with going into the building and enjoys looking in all of the other classrooms, but he freezes up when we get to the door of his classroom.  All of this week he has thrown himself down in the hallway and then I pick him up and physically hand him over to his teacher.  She takes him in and closes the door.  He likes all of the children and is always smiling ear to ear when I pick him up.  I know the school is a great fit for him and his brother as they have been incredibly accommodating, but there is this obstacle we have to get past every morning before he can relax and start playing and learning.  I wish I knew what the obstacle was.  We discovered the bathroom that he hated and was terrified of had nothing to do with the transition or the process of going to the bathroom, but instead it was the room itself.  The bright blue on the walls, the subtle buzzing of the fluorescent light, or the shape of the room did not suit him.  When they took him to the bathroom down the hall he had no issues going in.

So, the school is learning him and all of his tics and likes.  He has started therapy at the school and behavior therapy at home, but is still on long waiting lists for outpatient speech and occupational therapy.  His speech therapy evaluation showed he qualified and needed once a week outpatient therapy, but then in the following paragraph said he was added to a waiting list and they would let us know when a weekly appointment is available.  This seems to be a game we will have to play each time we move and, frankly, I'm sick of it.  We are now looking beyond our city and hoping that we can get him in sooner if we make a twenty minute drive every week.

Many will ask, why go through the pain of finding providers and dragging him to therapies every week, he seems to be doing fine?  But we have seen what these therapies can do for him and his responses for speech, sensory and feeding have all been very concrete.  For the most part, even without Occupational and Speech therapy, he is maintaining and not losing very many skills, but he is not gaining at the rate he was last year.  He still tests developmentally between the ages of 2 and 3 when he is almost four.  I realize therapy is not for everyone on the spectrum and not all children respond to it, just as mine has not shown response or improvement when we have tried diet changes and other homeopathic methods.  Just as all children on the spectrum develop at different rates, they respond differently too.  I recently read an article written by a woman whose son has "beat autism".  She laid out a situation in which her and her friend both had sons on the spectrum that were the same age, both used ABA therapy using the same methodology and saw completely different results.  Her son overcame nearly all of his autistic tendencies while her friend's son regressed further into his own world.

There is much debate on the subject of autism.  There is debate about its cause and debate about its treatment.  There seems to be not only two camps, but multiple camps all making different claims.  There are those who do not look at autism as a disorder at all, but instead a gift.  There are those with children with more severe cases who are begging for a cure.  There are those who think autism develops in the womb, whether it be from environment or genetics, or both.  There are those who still swear that vaccines play a larger role than the CDC lets on.  There are those who think diet can change behavior. There are clearly more questions than answers, and our government and medical community seem to be dragging their heals on funding and research that could answer those questions.

The whys and hows of autism are incredibly important, especially if there is an exposure we are missing that is at the root of the cause.  But for our family, we are pressing forward beyond the whys and hows and onto the what next?  We know what works for our son and we will move mountains to ensure he has access to the therapy and instruction he needs.

And when you brush all of that away after the dust settles you have this perfect little boy that can floor you with his gifts, stun you with his smiles, and bring you to tears of laughter with his logic.  Beyond the daily struggles he plows through, there is this amazing intellect and sweetness; an excitement for the little things in life that cannot be matched.  While we still must meet the challenges of autism everyday, we are learning that we are along for a ride, and life is so much more enjoyable when you embrace the journey.

The Good, the Bad and the Unknown

I think anyone who is a parent knows that parenting can show us our best qualities and unfortunately sometimes our worst attitude.  I feel like being a mother I have experienced my strongest and my weakest moments.  I have decided that Autism Spectrum Disorder (and probably any special need) truly reveals the spectrum of the best and worst in all of us.  I find in our family it has taught us that we are stronger and more capable and more determined than we ever would have known had we not had to handle our situation.  I find in me personally having a child who is facing so many daily challenges has taught me that patience goes a long ways and frustration only hinders our routines.  My weaknesses in handling frustrating behaviors in our children are compensated for by my husband's very calm approach to parenting.  He is not at home coping with the daytime struggles, so when he gets home and sees me about to burst, he has fresh eyes to see the situation and a renewed tolerance level that has all but diminished for me by the end of the day.  This offers me a calming reminder to regroup before my motherly exasperation gets the best of me.  Of course, sometimes I bite his head off for offering up such reminders and I take it as criticism.  But I am thankful that in family at any given moment at least one person will be the levelheaded voice of reason that can restore the calm.

I think I have seen this scenario unfold in every family, especially if one parent stays at home.  But when I say these moments are intensified for a special needs family, I want to walk you through a day on the spectrum.  This is not an exaggerated example or a bunch of situations that have occurred over a few months' time, this is from ONE day, after which I did not feel it was a particularly bad day, but it was a day that made me think about how he and everyone we come into contact with are affected by ASD, for better and for worse.

Our day started at Five AM, he had actually slept the night before (which happens only about once or twice in a 6 month period) so he was up very early, but I still tried to lay down on the couch with him to get him an hour or two more of sleep.  By six he still had not fallen back asleep and my husband had gotten up for work.  He turned off our outside light, as he always does in the morning, but today was different.  Today our son was awake and saw the lighting in the room change.  This brought on an intense negative reaction.  "No, the light on!  No, the light on!"  We tried to correct the lighting back to the previous hue, but it was too late.  Then he just screamed, "No, the light off!  No, the light off."  Something so very simple, and I knew it was going to be a challenging day.  An hour of screaming and crying ensued.  Eventually he settled down enough to watch a show and eat his breakfast.

By the time he needed to get ready for Mom's Morning Out, he was in a decent mood.  Telling him we needed to get dressed though, was met with staunch opposition, and he claimed he wanted to stay home and go night night.  I have learned to just ignore these statements and get him dressed through opposition and sometimes kicking and screaming.  He alway enjoys preschool and Mom's Morning Out once he's there, so it's worth the morning struggle to get everyone out the door.

We pulled into the parking lot at MMO, it was full.  Ugh, I always dread when we cannot park in our normal spot.  As we pass where we would normally park he begins to scream.  "Go to school!  No, go to school!"  I try to explain to him that he still gets to go to school but we have to park somewhere different.  It doesn't matter, nothing I say in that moment will be processed.  He can only process what he is seeing, which is us passing by the school.  Even once we are parked, it is different, it is scary, it is unknown.  I know he will need to be carried today and he will not go in willingly since we will be using a different door.  I get out the baby's infant carrier and set it on the sidewalk, I have big brother go stand by her on the sidewalk and then I unbuckle him and pick him up.  It is amazing what we are capable of when there is no other option.  I pick up the baby in her seat (easily 22 pounds, plus a 15 pound carseat) and carry my boy (another 40 pounds) up the stairs and into the church.

Not just one, but two church secretaries see me trying to navigate the door while holding both kids and trying to keep the oldest out of the way.  They both jump out of their seats and nearly break their necks to assist me.  One of the secretaries knows us very well and always watches the baby so I can have both hands to get the boys to their upstairs classroom (a stroller might be more ideal, but our son is terrified of elevators and going into one brings on a panic attack).  She takes the baby into her office.  Once we get to the top of the stairs Evan lays down and covers his eyes.  He generally shuts downs for about the first 20 minutes of class.  He will close his eyes and sometimes cover his ears.  He has two wonderful teachers at MMO and a great one at preschool too.  One of his MMO teachers has been on this journey with us from the beginning, before we had a diagnosis or knew what was "wrong".  She and the director have worked with us to accommodate him and make the rooms and transitions less intimidating to him.  She pulls him off of me and ushers him to the Dinosaur Table.  I am not positive, but I think this new area this year with dinosaurs all set up to play may have been inspired by Evan and in a hope for him to have better days.  As I try to sneak away, I hear her talking to him (eyes still closed), "Look Evan, it's a T-Rex and a new dinosaur book!"  I know he is in good hands and that he will have a good morning.

Upon pick up, he is smiling and jumping and running circles around the big room.  I notice his shirt sleeves and collar are soaked.  It must have been a little bit of a hectic morning as the sleeves have holes chewed in them.  He often uses chewing on his clothes to calm him during stressful or overstimulating situations.

On to lunch, we attempted to dine in at a fast food joint as we had to go to an appointment that afternoon.  We always go to Wendy's, I can watch the kids closely while I am in line and it is usually pretty empty.  I looked through the window before parking and cursed under my breath.  There was a huge line and they are slow.  It didn't matter, the expectation for going to Wendy's was set once we turned on that street, a change in plans would have resulted in a horrific meltdown and I needed him in a good mood for his haircut (our most dreaded appointment ever).

So I sat everyone down at the booth and they were perfect.   The oldest entertained the other two and they all waited very patiently.  It dragged on, I was in line for ten minutes and I knew I had three little ticking time bombs over there, one who was especially explosive if things went south!  But they waited, they laughed, they sat patiently the entire time.  A little group of old ladies commented to me how wonderful they were being and what well behaved children I have.  I was beaming with pride for all of them, but especially for Evan.  If they only knew how many months of therapy and how much coaching it has taken for him to sit at a table and fight the urge to run in circles.

The boys were almost done eating when I realized the juice box I had ordered for Evan was the right brand but taller than the ones we use at home.  Oh NO!  This is going to be awful!  And it was.  He kept asking for juice to go with his food.  I showed it to him.  "No, wrong juice!!!"  I explained it's the same, the same color box, the same brand, it's the same!  No, it was too tall, it was not the same.  He started screaming.  I told him his dinosaur water was in the car and he could have it as soon as we were done.  "Yes, Dino water!" he wailed.  Well, no, we have to get done and go out to the car.  There was no reasoning or explaining at that point and the screaming was getting louder.  It's pretty hard to make a quick exit with three kids under 5.  I gathered up everything, while holding him and trying to calm him.  I could not walk over to the trash and then return to the table to get the other kids.  He would think we were going back to sit down longer and would flip if we change directions.  I had no choice, I had to carry him, the carseat with the baby and our tray so that we could do it all at once.

So that's what we did.  With him screaming in my arms and my other arm through the car seat holding the tray of food we headed for the door.  An older lady from a different table approached us.  She had been there the whole time, so she saw the great behavior and then witnessed the meltdown.  I thought she might be coming to help me with my tray.  "Wow, you have a pretty unhappy little boy on your hands there.  He must need a nap."

What do you say?  I will tell you what I wanted to say.  I wished I had an extra hand to punch her in the face.  Who would take all of the effort to get up and walk over to me in that crazy situation, make a stupid presumptuous statement and then turn to walk away without offering a hand?  What did that accomplish.  I wanted to say, "No, he does not need a nap.  He has not napped in years, hell the kid doesn't even need sleep at night.  He has managed himself so well this whole time and you are approaching me now, and getting him even more upset to make a statement that doesn't help the situation at all?"

Unless the situation is dyer and the person is especially rude, I do not play the autism card.  I do not even allude to the fact he has an issue.  I am always afraid it will sound like an excuse.  And really how much time do I have to make someone aware that he has autism and sameness is a must and the juice box was different and this messed up his world and correcting it takes time.  I guess I wish I could take the time to make people aware.  But in those hectic situations, his well-being and our safe exit is all that matters.  I smiled and said "Well, you know, they had the wrong juice."

She shook her head and walked away.

Whatever, I had bigger problems.  This kid was in major meltdown mode and I had a haircut appointment to get through.  I blamed myself, what an idiot I was to not bring in a drink option for him in case something went awry with the drink they have.  Lesson learned!

So, on to the haircut.  We use a lady who cuts hair in her home and she has been amazing.  Even when it doesn't go well (which is always) I do not have to worry about getting a bloody nose in front of a bunch of other people or dodging dirty looks and rude comments.  She has a play room that he can relax in while our oldest son gets his cut.  He hears the clippers and covers his ears, but does not react as badly as he does in a regular salon.

Once it's his turn I go in and sit on the chair and put him in my lap.  He screams and cries the whole time.  The vibration of the clippers, the sound of the clippers, the feeling of the hair falling on his face.  It's sensory overload at its worse and most children with autism absolutely despise haircuts.  He also despises hair washing and brushing.  So we go through a hell of a few minutes once a month to have an easier daily routine.  We have tried distractions, treats, everything.  Nothing works.  We cannot use scissors as he bucks the whole time.  It is so terrifying for him.  Our hairdresser gets it done in about 4 minutes and we just just buzz it off.  I put a hold on his entire upper body with one arm, I hold his forehead with my other hand and I lock his legs between my two legs.  I count and provide deep pressure and sing ABC's.  There is no explaining it will be done quickly as the here and now are all that matter.

After he was done the hair on him was really bothering him.  It usually does not bother him this much, but this day he was itching all over and sobbing on the floor.  Our hairdresser sprinted to her son's room and grabbed a shirt for him to wear.  I had one in the car, but we didn't want him to go outside without a top on and I couldn't leave him so upset, it would only intensify.  There was a raccoon on the shirt, so at first he wanted nothing to do with it.  We let him settle and she asked again if he wanted a fresh shirt.  He let her put it on him.  She knows how hard this experience is for him and goes above and beyond to make him comfortable.  He wore her son's shirt home and I was so grateful that instead of brushing it off as an overreaction she was incredibly eager to help.

We got home and needed a bath as he was still itching.  He did not want to take the raccoon shirt off now!  I think it was about thirty minutes of running around the house and screaming "No bath!", I am sure some things got broken, I don't really keep track anymore.  We put on some music and his mood improved.  We were able to get the bath done, although he was very upset by the bubbles (soap).

After bath I had a glass of wine and the boys had a dance party.  We played Her Diamonds over and over (how fitting, right?); that boy loves him some Rob Thomas.

This was around 3 and I will be honest the rest of the day I do not remember as vividly.  I am sure dinner was a bit of a battle.  He fell asleep rocking on the couch singing after taking his medicine (without sleep meds, he sleeps only two-three hours a night).  He slept until 12 and then was up for two hours (I do not remember this specifically, but it's pretty much a given every night) and then finally fell back asleep next to me on the couch.

This is long.  This is exhausting to read.  This is exhausting to live.  So what is the take away?  A couple things.  First, I go into excruciating detail because our lives right now are very carefully choreographed routines.  We tip toe, we plan, we sometimes feel like we walk on egg shells to keep our lives and his world running as smoothly as possible.  For families living with autism, Autism Awareness is not a buzz phrase.  We are not using it as an excuse for bad behavior or a ploy to get your pity.  We want you to know what it is like and we want you to feel how he feels.  I want you to know how bad it was and how much better it is getting with services, but how much further we have to go.  I want you to understand that my child is not just quirky or just a little different.  You are seeing years of progress with intervention and many hours of work and patience that our family and our son has endured.  When you see us on our good days, it is because these services are working and I am working endlessly to make everything go a certain way so that it will be a good day.  When you see us on our bad days, know that we are a work in progress and we are constantly adjusting our lives and tactics to address any new challenges autism presents.

The second take away is quite simple: people matter.  The people that surround us are our support system, our confidants and sometimes our hindrances.  Out of this entire day that I have laid out for you, there was only ONE person that didn't get it.  There was only ONE negative reaction that left me with a bad taste in my mouth.  And thank God for everyone else, because if we had to combat autism and negative people all the time it would be too much.  I am so grateful for all of the people, even strangers and acquaintances, that offer a helping hand or a kind word.  When everyday goes like this, we need understanding and we need people in our corner.  He needs teachers and therapists that care, because we are shaping him into a person that can conquer all of this.  I want the world to know how important that is and I want our leaders to do more to make those services and autism research a priority.

The challenges of autism offer all of us an opportunity to be our best selves.  It offers my husband and I  the chance to be the best parents we can be.  It offers our family a chance to be supportive and caring, even if they cannot be here to help with the daily struggles.  It offers our friends the chance to be a listening ear or a shoulder to cry on when we need that support system the most.  It offers his siblings a chance to be better people and to know that it is never okay to bully and it is always a must to take care of those that cannot take care of themselves.  It offers teachers and professionals in the field of special needs a chance to shape a little boy and give him tools he will use the rest of his life to function and succeed in this world.  It offers strangers a chance to lend a smile, or a helping hand that could make our day ten times easier and they may never know.  My hope is that after reading this you will always take those opportunities because you know the difference it can make in a family's day.

Unconditional Love and Never Never Land

Over the Christmas holiday we decided to enlist the help of one of our Christmas decorations to promote good behavior with our oldest son.  Very much an Elf on the Shelf tactic, but we didn't spring for one of those this year.  Instead, we have a rustic snow man that holds two little blocks to countdown to Christmas.  It started out simple enough.  Our oldest son was being a little crazy and not listening one day and I told him that he needed to behave or Santa would not bring him any presents.  When we were kids, it was enough for our parents to say, "Santa sees everything you do, so be good!" That was not enough for Brennan, though.  He asked inquisitively, "If I am here and Santa is at the North Pole, how will he know when I am being bad?"

Instead of taking the magical route, I went with the technological approach.  Our children, after all, are pretty up to speed on the latest technology these days.  So I informed him that there was a webcam in the snowman's head and it would Skype a live video feed back to Santa at the North Pole.  This answer was sufficient for him and for the most part we saw drastically improved behavior leading up to Christmas.

Our youngest son did not understand the concept of being good for an upcoming day.  As everything for him is happening right now and he can't even really grasp the idea of tomorrow, much less behaving well for a month in order to have a reward of presents.  Evan absolutely loved all of the Christmas decorations, but the concept was lost on him.  He most loved trying to take every single ornament off the tree and throwing the countdown snowman on the floor a hundred times a day.

This worried our oldest son...A LOT!  "Mom, Santa is not going to bring Evan any presents, he sees him throwing this snowman down over and over again.  He is going to be on the naughty list for sure!" I tried to explain to him that Evan doesn't quite understand consequences yet and really does not even know that throwing the snowman down is a bad thing, he is just very excited by all of the decorations and doesn't quite know how to handle it.  I assured him that Santa would probably understand.

So this had become the normal conversation every time the snowman was tossed to the floor.  Until one day our oldest instead said, "Oh, Evan, I know you don't know why you do that, but Santa knows you have autism, so I hope you get presents anyways."

Just in case Santa did not already know, he then took it upon himself to prop up the snowman and explain Evan's situation to Santa.  It was one of the sweetest big brother moments I have ever seen.  Almost like he was defending his little brother's case.  "Santa, Evan just has autism, he doesn't always know what he does and he does stuff before he thinks most the time."  For a just turned 4 year old I thought this was a rather accurate analysis.

He does not overcomplicate Evan's issues, but he frequently has to overcome boundaries that autism presents to our entire family.  He tries to play with Evan and wants to engage him, but Evan will misinterpret his signals and thinks he is trying to take the toys he is holding.  So Brennan's prompting for play is often met with him getting hit by a dinosaur.  It doesn't stop him from trying though and he rejoices in Evan's successes right along with my husband and myself.

The innocence behind his questions and comments about his brother's autism will melt your heart and for me, they have taught me more than I could ever read in any book.  The other day, Evan said a wonderful sentence and asked outright to watch a very specific movie, even naming the characters.  Brennan jumped up and down and exclaimed "Evan, you know their names, you know about the movie, you're starting to not have autism anymore!"

He sees his brother growing and overcoming challenges, and he hopes it will go away so that he can play with his brother and his brother will always respond when he talks to him.  It's his heart's biggest wish and it comes up very frequently.  He knows his brother is different and he is okay with that, but he wishes it was not so hard for him to understand and communicate.

He asked for power rangers for Christmas and made an extensive list of toys just like every other kid.  But a few days before Christmas he walked up to the snowman and said "All I really want for Christmas is for Santa to take my brother's autism to Never Never Land so he will never have to deal with it again."

All of these comments and with all of the attention we sometimes have to direct to Evan, I know he wishes it was different.  He asked if his sister will have autism when she is three or if she will be able to understand him and play with him.  It moves me that no matter how much he gets ignored or chased away, he will always ask Evan to play with him and there are moments where he breaks through, like only a sibling can.  That little boy lives for those moments.  He tolerates listening to screaming at night and usually just turns over and covers his head.  He tolerates having to give up a toy he had first if his brother desperately wants it and cannot be consoled.  He usually stays very calm when his brother destroys a city he's made out of blocks.  He may not completely understand, but he gets it and has matured a lot because of it.

His little baby sister will get it too.  For right now she loves to watch her brother run in circles or rock and sing.  Her face lights up when he talks to her.  They seem to have their own little special connection.  Evan does not really understand soft touch or that he is bigger than she is.  He is working on it, though.  More than once has he said very sweetly, "Sit on baby's lap," as he tries to sit on her while she is sitting in her bouncer chair.  We have obviously had to watch him very closely, more like you would handle a one year old with a new baby.  But he is learning and will try to kiss her and hold her hand.  He has even shared his beloved dinosaurs with her on a few occasions, but then of course quickly takes them back claiming they are too big for her.

I am so grateful that Evan has siblings that will always watch out for him.  And with all of our moves I know the boys will always have a builtin best friend.  I think his siblings probably understand him better than I ever will.  Even though they may have to grow up a little faster to cope with the challenges our family faces, I know it is building character and shaping them into individuals who will not only accept people's differences, but embrace them.