The Two Words You Can Say to Someone Facing a New Diagnosis

We have moved across the country again and have been at our new home for a couple of weeks.  I must admit, I feel like a veteran autism mom this time around.  Even though we are still early on in our journey, this move went much more smoothly.  Services for our son have already been established (services I have been working for months before the move).  I walked into his new district building with two former IEPs, his medical diagnosis, birth certificate, lease, medical records, and slew of other paperwork.  I filled out registration papers with three kids climbing all over me and trying to tear down the waiting room and I didn't bat an eye.  I've got this.

As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their children and I didn't know what to say.  I think I found myself tongue-tied because all I could think about was all of the things not to say.  All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife.  During my discussion with these moms all of those comments came rushing back into my head.  Some almost came out, because I just didn't have the right words in that moment.  Wow, this is what it feels like to be on the other end of this conversation.  Even without the right words early on I just couldn't bring myself to say the wrong ones.

I wouldn't say "I'm sorry."  I heard a lot of these.  And they were always empathetic and heartfelt.  But they made me feel worse, not better.  I didn't want people to be sorry for me.  While this life might be different, it is not less.  While my child might miss out on some things, he is not less.  His life and his diagnosis are not things I feel sorry for, you shouldn't either.

I couldn't say to these moms "He'll be fine."  I don't know if your child will be fine.  I don't know that early intervention will move mountains.  I don't know what the next twenty years looks like for you and your family.  And when people told me "You caught it early, he will be fine..." it hurt.  If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed?  Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine."  ASD is very complex and no two journeys are the same.  Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.

I knew better than to say "Really?  He seems so normal."  I was surprised by how much I heard this one.  It seemed like an attempt at a backhanded compliment.  But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.

I would never say "Oh, I hope not."  I only got a few of these doom and gloom responses.  They lacked empathy and pretty much damned us to a life of a misery in one simple phrase.  It is not a comfort and it is not helpful to try wish away a family member's diagnosis.  It's hurtful.

You see, all of those are overthinking and overanalyzing someone else's situation.  Those phrases do not comfort, they simply insert my opinion when my opinion was not asked.  Parents facing an ASD diagnosis do not want unsolicited advice or pity.  They do not want you to minimize their feelings or give false hope.  They want you to listen.  They want you to care.  They want you to stay in their lives and not brand them as special needs parents.  They want you to understand that although their lives might be taking a different turn, they still need friends.  Their children still need friends.

Then it came to me.  The two simple and perfect words you can say: "I'm here."  And mean it.  Mean it through every struggle, every victory and every passing year.  Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands.  Mean it when you are making out the list of which children to invite to your child's birthday party.

They don't need you to be an expert on autism.  They don't need you to always say the right thing.  Now, more than ever, they need you to just be there.

To the Caring Teachers of the Little Ones with Special Needs

I don't know your background.  I don't know why you chose this profession.  I don't know where your inner strength comes from or what keeps you going.  I don't know if you will keep doing this or if you will move on to other jobs.  I don't know how much of your day you take home with you at night.

But this is what I do know:

I know you care for our children as if they were your own.  I know you celebrate every single little success they have, because you know just how hard and long they had to work to achieve it.  I know you watch them develop and your hopes for them go far beyond your classroom.

I know you hear the same news stories I do.  I know you cringe when you hear of a teacher who hurt a nonverbal child.  I know your heart aches that you have to work so hard to earn parents' trust and you wish they knew that for every one abusive teacher of special needs children there are a hundred more that would do anything and everything to protect our children.  And because you are that teacher who would do anything to protect these kids, you have no problem earning our children's trust and earning our trust.

I know you have hard days.  I know you juggle the needs of many children at once and have to work constantly to maintain the peace in the classroom.  I know you stay up late working on things for the next day and stay at work late to make sure your classroom is "just so" for tomorrow.  I know you have to work harder than your fellow teachers who teach typical children to think ahead for the day and to try to see and prevent potential triggers and obstacles that might make our children's days that much harder.  I know the hard days have been physical, but you press on, you don't lose your cool and you hope tomorrow will be better.

I know you probably have days when you wonder if all of your patience and heart and perseverance are noticed.  I know you might have days when you want to throw in the towel and move on to something easier.

I hope you know that I see your passion for these children.  I see the excitement in your eyes when mine does something new or overcomes something that once would have set him back.  I see how hard you work to ensure he has successful days.  I see you on the hard days and I know when he comes home upset, you may have endured a day of screaming and crying.  And I know you did everything in your power to calm him.

Know that you have given me a break when I needed it the most.  Know that you have given peace of mind about one aspect of our day to a parent who has to worry about so many other things.  Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face.  Know that every success our children will go on to have is the result of a foundation you helped lay.  Know that every struggle and every accomplishment in your classroom are stepping stones to a future they couldn't have had without you.

I know you wonder if you make a difference.  Know that you do.

Sincerely,
A Special Needs Mom

Baring all: A Mother's Truth

The baby years with each of our children have all been so different.  On the surface one would think that experience is completely shaped by the baby's temperament and the family dynamic at the time the baby is born.  While those definitely factor into the experience, looking back and examining myself as a mother, I see my outlook at the time, my own mental health and my support systems molded each babyhood and how I remember the early days in each case.  That being said and this being a piece about me as a mother and not my children themselves, I can say without guilt that I am finally enjoying motherhood and the baby years the third time around.  There, of course, were many happy moments with each child as a baby, but this time I'm in a better place and it's made a world of difference.  We still have rough days that gnaw away at my sanity, but, for the most part, we push through the bad ones and hope tomorrow is better.  That was not always my mindset and I know there are a lot of new moms and special needs moms that are still in that dark place feeling isolated, but you are not alone.

When I was pregnant with our first, I had everything planned out perfectly for how I would raise all of our children.  I didn't have a lot of hands on experience with newborns or young babies, but I had read everything under the sun about the best parenting methods and all of the latest studies for what to do with babies and what not to do with babies.  I knew that I would nurse until the baby was at least nine months old and I knew that I would try to get him on a schedule as early as I could.  I was nervous, sure, but I planned my way around the nervousness.  I had gotten my BA and graduated near the top of my class.  I had managed a law firm for a couple years after that.  So I was quite confident that I could handle anything this parenting gig had to throw at me.

We had our perfect baby boy at a perfectly scheduled induction with a delivery and post delivery that went perfectly.  Everything was right on schedule as we left the hospital to go home to our perfectly organized nursery.  I wanted to do everything right.  This was a human life so there was no room for error.

Nursing was going okay in the hospital, but once the soreness and the cracking started, things went south quickly.  I would power through it.  After all, all good moms HAD to nurse if they were physically capable.  Everyone talks about it not being easy at first, so I just assumed the pain I was experiencing was normal and that dreading the next nursing session to the point of tears would alleviate once we got into a rhythm.  It didn't.  The pain got worse, my production dropped off, infection occurred and because he was getting barely anything in his stomach he had to nurse constantly.  I sobbed with worry in the nights as I could tell I was not doing it right or something was not working.  My husband begged me to try formula for my own sanity, but my pride and knowledge of the "right way" to do things wouldn't let me hear him.

Much worse than the nursing troubles was the anxiety.  The anxiety about every little thing.  Was he too hot, was he too cold?  Was I putting too much water on his hair?  I completely stopped sleeping, even when he would sleep I was wide awake with worry, trying to hear him breathe.  After the third day without any sleep, I started hallucinating.  Even though he was safe in his pack and play I was completely convinced that shirt wadded up on the floor was his little body, that had somehow fallen out of the pack and play and my heart jumped into my throat.  At one point my husband found me with the baby crying in just his diaper and me with all of his clothes laid out on the floor trying to find something that was appropriate for sleep.  My brain was too bogged down with worry to even make simple decisions.

I had heard of Postpartum Depression, but I assumed if I was having PPD I would be weeping constantly, which I wasn't.  I didn't realize that extreme anxiety and sleeplessness were also symptoms.  I called to talk to my nurse about the sleeplessness and finally broke down into tears; they had me come in right away.  After talking to my doctor and realizing what I was experiencing went far beyond the baby blues, we decided on a course of action to get me functioning and feeling well enough to take care of myself and our baby.  One aspect of that course of action was to stop trying to nurse and although I was heartbroken, I knew it was the right decision.

The anxiety did not go away completely.  I was still a first time mom, after all, but with the proper medical treatment our schedule and routines started to fall in to place and my confidence started building in my abilities as a mother.  So much so that we decided to have another child close in age so that we could wrap up the baby years close together, the kids could go to school and I could go back to work.

Twelve months and ten days after the first we had another beautiful baby boy.  After everything I went through the first time, I knew this time would be better.  I knew how to do the baby thing this time around.  I wasn't worried about nursing.  If it worked, great.  If I started having medical issues again, I would not hesitate to switch to formula.  I had a plan, I knew how to get a baby on a routine and the order to introduce solids and how to time naps.

Aside from the very different dynamic of having a one year old and a newborn, there was something else that made this time so much harder.  I couldn't put my finger on it, but nothing was working.  All of the things that had worked with our oldest did not work with our youngest.  Nothing that I did seemed to comfort him.  We thought he must have allergies to what he was eating, as he seemed miserable all of the time.  I was elated when his first teeth broke through at four months old.  I thought the constant crying would stop and that must have been the issue the whole time.  It wasn't.

When the boys were six months old and 18 months old we moved across the country again to a new home.  I knew no one and my husband deployed three weeks after the move.  I made friends and we all got together frequently, but I couldn't help but feel like I was doing something wrong as I watched their babies develop, get on a schedule, and hit their milestones.  My oldest had hit all of his milestones early, but our youngest was not crawling, was not sitting up on his own and was not babbling.  Worst than all of that at the time was that he never ever slept.  With my husband overseas, I was essentially single parenting a young toddler and an infant on next to no sleep.  I would try to relay my concerns to my husband during our phone conversations, but with the kids always needing something it was hard to have an in depth conversation about my state of mind or my worries about development.

Our pediatrician continually chalked up our youngest's difficulties to just being a harder baby and being too stubborn to hit his milestones.  He insisted that I let him 'cry it out' to finally get him to sleep, which I tried to no avail.  He would hurt himself and cry so hard he would vomit.  Upon consulting the pediatrician again, I was told if I just let him go he would learn not to hurt himself or vomit because he would have to sleep in it.  I had never disagreed with a physician before and ended up letting him sleep with me instead, which I hated and swore I would never do.  Even with him lying right next to me, he still wouldn't sleep.  Every food, every transition, every everything was a battle.  A battle I was losing.  I can't help but think if I had had a pediatrician that would listen, or a husband home that was seeing the same things I was, or a friend who had been through it all and may have known what to look for, the mommy guilt may have not come on so strong.  I even took videos into our doctor to try to make them understand the extent of how upset he always seemed to be.  I don't think young parents would ever believe how naive many pediatricians are when it comes to autism and other neurodevelopment issues.  I took ours at his word and thought I was losing my mind or just a really terrible mom.  Or maybe it was all my fault because we had the kids too close together and all of our youngest's issues stemmed from me not have enough time or energy to tend to him properly.

It's amazing how as mothers we always turn inward and every problem with our children or our marriage we make our own responsibility.  And instead of lifting each other up and encouraging each other during our most isolated moments, we judge each other as mothers or feign understanding and compassion and then talk about another's decisions, methods, and struggles behind her back.  It's no wonder new moms feels so alone.  God forbid they voice their feelings or their shortcomings and be met by an army of judgmental women who are sure they have made better choices.

I am sad to say it's even worse in the autism community.  We judge each other's every move from treatments to labels to parenting methods.  So much so that the simplest things have become controversial.  And outsiders judge us too.  It doesn't help that we live in a society that always wants to place the blame on someone when we are dealing with something like autism, that we still know so little about.  And sometimes the people closest to us that should be our greatest support hurt us the most with their ignorant comments and their own need to place blame.  Parenting is hard, but made so much harder with the mom shaming and negativity that comes with it.  

But the third time around, I let all of that go.  Our third is a beautiful baby girl, who by all accounts is not nearly as easy as our first.  It's not easier having two other children, one of whom was a toddler with autism going through some of his most challenging moments when she was first born.  But this time, I made sure I was okay.  If I need help with the kids when my husband is away, I budget for another set of hands to help out every once in awhile.  When I feel like I'm about to lose it, I try to be better about communicating that to my husband so we can make a plan to alleviate some of the stress of being a full time special needs mom.

I don't play the mom judging game and I surround myself with others who feel the same way (most are in my computer, but I'm okay with that).  As far as the judgmental voices or chatter that comes my way, I have discovered life is so much better once you stop giving a damn.  But to enjoy the baby years this time around, the harshest critic I had to silence was myself.  Our lives cannot be completely scheduled or predictable, and that has to be okay.  Our house cannot be perfect, or even close to it, and if that means I get more time to play with my kids, I think that's a better deal.  The kids are going to watch tv so I can have my coffee, or do some dishes, or write and they are not going to be damaged if they watch one too many shows a day.  I won't send award winning cupcakes to school on party day; in fact, I might forget to send anything at all, but I will be enjoying outside time with the kids the night before and not cooped up in the kitchen.  The years they are little go by far too quickly and over-planning and worrying will not slow it down.  Quite simply, this time around the first steps, the first words, the first party, the day to day joys of having a toddler I have finally fully grasped because I've learned to let go.

Higher Highs, Lower Lows; It is What it Is

As the feedback came in from my last post Please Don't Tell Me Autism is a Gift, there was one critique of that sentiment with which I could not disagree.  Some said that while they did not think it was a gift, it had opened their eyes, made them appreciate the small things and gave them perspective.

Am I saying I am thankful my son goes through everything he does so that I may come out the other side enlightened?  No, absolutely not.  I would not wish his challenges on anyone for any reason.  I just wouldn't.  For me, autism is not a blessing, autism is not a curse, it just is what it is. 

But just as I shared some of our struggles to give the outside world a peek into our daily lives, there is another aspect of this life that I find important to share to offer a more holistic view of this journey.

I would argue that we experience higher highs and lower lows as parents of children on the spectrum (or any special needs children, for that matter).  I can't really describe to you the feeling when a four and a half year old uses a spoon efficiently for the first time.  Remember how excited you were when your one year old used a spoon?  Now imagine how much more intense that excitement would be if you had waited four times that long to see it happen.  Not only had you waited, but you had worked and your child had worked tirelessly to make it happen.  We worked with an Occupational Therapist to try to teach the coordination it takes to scoop up food and get it into his mouth without spilling it everywhere. We practiced at most meals even though he preferred finger foods.  He often would not stabilize the bowl, he would get frustrated when the bowl would push around on the table and as he would raise the spoon to his mouth he would always flip it and lose most of it.  Then if any of it got on him he would have a full out meltdown about something messy or wet touching his skin or even his clothes.  I'm not going to lie, my heart soars every time I watch him eat independently, something I honestly took for granted with our oldest.

After so many hours of speech therapy and so much effort at home, listening to him form a sentence is almost magical.  There were so many times when he didn't have the words.  There have been so many heartbreaking instances when I would look into his eyes and feel like he is trapped inside himself.  Hearing him convey his fears, express his needs, voice his feelings; in those moments I couldn't be more proud of something so many take for granted.

When we have a successful outing (even a thirty minute trip to the grocery store) I feel like I have just run and won a marathon.  Do you know why I post about those good trips, why I sing my son's praises that he was able to handle the lights, the noise, the transitions?  Because we had so many trips that ended with me in the car in tears.  So many half full shopping carts that were left in the aisles because I just couldn't stand the judgmental stares anymore.  So many trips that resulted in entire days of trying to bring him down from the sensory overload.  His tears, my tears, so many tears.  So when we have an outing that doesn't result in tears, you're damn right I'm going to celebrate! 

And the nights...I can't really describe how hopeless I have been during the bad nights.  Not just nights when he was up and talking and I wanted to sleep.  Not just the exhaustion.  But so many nights we had meltdowns, screaming, self injurious behaviors and times when he would go after me.  He wasn't asleep, he wasn't awake, he was short circuiting and could not make sense of all his body was going through.  On those nights that seemed to last forever, I have never felt more alone.  But now, even though he never sleeps through the night, he gets up once and usually goes back to sleep within an hour without incident.  That might not sound like a good night to you, but I cannot even express how grateful I am for six hours of sleep and a night without him going through the trauma he used to.

Higher highs and lower lowers apply to our view of the future too.  After receiving the diagnosis and the prognosis, I mourned for the life he will not have.  I don't know that he will ever play a sport, live on his own, go to college, have a family, or have a job.  That is a heavy realization to have, one that continues to weigh on us everyday.  But even in that mourning there are glimpses of hope.  With every little bit of progress with language, with every new skill mastered, with every academic achievement, my heart smiles and I am so hopeful for the progress that lies ahead.  But, frankly, having witnessed him so fearful, so miserable, so pained; simply seeing him happy on the good days is enough to bring me unmatched joy.  I know with a lot of hard work and resilience the rest will fall into place and we'll be okay.  Even if that okay looks different than I thought it would.       

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.