Our Choice to Medicate

I was just like you. I gawked and judged anyone who mentioned medicating his or her child. “They did not try hard enough,” I would say to myself. I judged. Now I regret every rude thought that entered my mind. To those who still silently judge, this is for you.

Those who love us know how hard I tried and continue to try. I whole-heartedly believe that nutrition and a clean diet can be game changers. I whole-heartedly believe that biomedical treatments for kids with autism do work. I whole-heartedly believe that ABA therapy changes and enhances the lives of those on the spectrum. But I also know that a year ago I was hiding.  We had stopped all our activities and outings. I would leave him with the babysitter longer and longer each day because taking him to a store was not an option. Years ago, we had already surrendered most of our freedom of being able to go to birthday parties, restaurants, and any place typical children may be.

Parks were our outlet for many years; they allowed him to roam freely and play without disturbing others. But by this time we had stopped going to any park that had ANY person there. We only went in the wee hours of the morning when we could be alone.  Empty parking lots became our “outings” because my kids could run and play freely- and when his outbursts became unmanageable, he could safely and quickly go to our car to “scream it out” and no one would judge us.

I was scared. I was desperate. Every time he had an aggressive episode I would lose more hope, more confidence in my ability to manage him on my own. His physical strength was growing but mine remained the same. It was only a matter of time before his strength would surpass mine. Many episodes I watched helplessly as he tore our home apart and beat himself in the head mercilessly.

 

My world began closing in. I began to shield my friends from the horror that we lived every day. Even those closest to us did not  know how bad it got. No one lived it the way I did. How could they not know? Because I hid it.  Silence and smiles covered up the tears and physical marks from outbursts- the pain in my soul hid behind my fake smile.

 

I would like to tell you that the aggression was the worst part, but I would be lying. It was the screaming. Car rides (2+ hours round trip) were unbearable. We have all sat through a horrendous car ride with a baby or toddler crying- multiply that noise level and frustration. This was every single day, every time. Every morning on my way to work. The screaming was relentless. It pierced through my ears and made my brain shake. Having any type of conversation with my other children was impossible. My middle child began wearing headphones in an attempt to block the noise. The baby had to suffer through the torturous screams as keeping headphones on a toddler is… well… if you have a toddler you know.

The constant, hours and hours of screaming that finally made me say yes. Yes, we need help. Yes, we need to medicate him. I finally surrendered to the fact that I could not allow this to continue any longer.

Somewhere out there, there is another family in crisis. Hiding the ugly autism and putting on the brave faces needed to survive this world. I know this because I lived it.

So if you hear a momma talking casually about the medication her child is on, just know that the choice she had to make tore her up inside. Know that she questions herself every day when she looks at her child. Know that she agonized for weeks, months, or years over this decision. Know that she has tried it all and will continue to try. Know that it took everything in her to admit that she had lost control.  And while she doesn’t need your approval, she most certainly doesn’t need your judgment.

Our Choice to Medicate

I was just like you. I gawked and judged anyone who mentioned medicating his or her child. “They did not try hard enough,” I would say to myself. I judged. Now I regret every rude thought that entered my mind. To those who still silently judge, this is for you.

Those who love us know how hard I tried and continue to try. I whole-heartedly believe that nutrition and a clean diet can be game changers. I whole-heartedly believe that biomedical treatments for kids with autism do work. I whole-heartedly believe that ABA therapy changes and enhances the lives of those on the spectrum. But I also know that a year ago I was hiding.  We had stopped all our activities and outings. I would leave him with the babysitter longer and longer each day because taking him to a store was not an option. Years ago, we had already surrendered most of our freedom of being able to go to birthday parties, restaurants, and any place typical children may be.

Parks were our outlet for many years; they allowed him to roam freely and play without disturbing others. But by this time we had stopped going to any park that had ANY person there. We only went in the wee hours of the morning when we could be alone.  Empty parking lots became our “outings” because my kids could run and play freely- and when his outbursts became unmanageable, he could safely and quickly go to our car to “scream it out” and no one would judge us.

I was scared. I was desperate. Every time he had an aggressive episode I would lose more hope, more confidence in my ability to manage him on my own. His physical strength was growing but mine remained the same. It was only a matter of time before his strength would surpass mine. Many episodes I watched helplessly as he tore our home apart and beat himself in the head mercilessly.

 

My world began closing in. I began to shield my friends from the horror that we lived every day. Even those closest to us did not  know how bad it got. No one lived it the way I did. How could they not know? Because I hid it.  Silence and smiles covered up the tears and physical marks from outbursts- the pain in my soul hid behind my fake smile.

 

I would like to tell you that the aggression was the worst part, but I would be lying. It was the screaming. Car rides (2+ hours round trip) were unbearable. We have all sat through a horrendous car ride with a baby or toddler crying- multiply that noise level and frustration. This was every single day, every time. Every morning on my way to work. The screaming was relentless. It pierced through my ears and made my brain shake. Having any type of conversation with my other children was impossible. My middle child began wearing headphones in an attempt to block the noise. The baby had to suffer through the torturous screams as keeping headphones on a toddler is… well… if you have a toddler you know.

The constant, hours and hours of screaming that finally made me say yes. Yes, we need help. Yes, we need to medicate him. I finally surrendered to the fact that I could not allow this to continue any longer.

Somewhere out there, there is another family in crisis. Hiding the ugly autism and putting on the brave faces needed to survive this world. I know this because I lived it.

So if you hear a momma talking casually about the medication her child is on, just know that the choice she had to make tore her up inside. Know that she questions herself every day when she looks at her child. Know that she agonized for weeks, months, or years over this decision. Know that she has tried it all and will continue to try. Know that it took everything in her to admit that she had lost control.  And while she doesn’t need your approval, she most certainly doesn’t need your judgment.

Behind the Mask

It has been almost a year since I have blogged and I hate that so much time has passed. Of course I have a million things I want to share, report, vent about, and get feedback from but alas we must move on to the present. One day (in my next life) when I have time, I will go back and give the play by play. Today, I wish I was a more dedicated blogger so these posts are not so few and far between; life keeps moving and I wish I was able to type the things that I experience daily and the thoughts that go through my head as they occur. So let’s just jump right in. Hopefully this will be insightful and not a mess of unorganized thoughts and unruly emotions.

“Behind the Mask” speaks to the secret life that most parents of children with autism live daily. For me this secret life consists of crying, biting, tantrums, poop accidents, frustration, fear,  and a cycle of exhaustion that never lets up. It’s a lot like being in a very unstable, emotionally unhealthy relationship- except it’s your child not a peer.

For about a week now we have been experiencing almost non-stop crying at home. If this sounds unpleasant to you- you are just scratching the surface of the frustration level this brings to everyone who has to suffer through it. I should not be surprised, Miles has cycles of behavior that follow the seasons and months almost exactly. Fall/Winter is our clingy, whiney, crying for no reason all the time- season. He has become more verbal (blessing) so it is easier to manage the immediate needs of “hold me” and “blanket” and of course the “sock”. However, why is he crying- I never know. This is not tantrum crying but a sobbing that occurs with tears and fearful looks in his eyes. It is both heartbreaking and dare I say, annoying (harsh I know but this is real). To sit and rock a sobbing four- year old for hours every night is slowly breaking my heart. This happens every fall/winter so you would think by now I would expect it, deal with it, and move on. And the “mask” of my life has moved on. I go to work, I socialize, I write inspirational and up lifting things,I laugh and joke about the simple things, but under the mask is the fear and the heartbreak that I have no idea how to comfort my own child. Under that fear is the guilt and disgust I feel for abandoning my other child while trying to calm the other. And buried under it all is the devastation that this might never get better. It is hard to even read that last sentence because I have trained my brain for optimism and hope and believing that life will not always be this hard. But there is always a lingering doubt way way in the back of my thoughts, way behind the mask.

In addition to the crying, biting has now re-entered our behavior list which adds a fun twist to tantrums. I can’t let him lay his head on my shoulder without jumping back to protect myself.  And the infinite times a day that he tries to bite me are masked by my fake self that is presented daily to keep it all held together.

Poop accidents which are becoming more common instead of less common- almost five months into potty training are exhausting, disgusting, and a cleaning process that drains me daily. Yes, this will pass and yes this will get better but living in it is HARD.

Too many people confuse my “strength” with my mask. My mask tells the world that this is not a big deal and that I am moving through all these behaviors properly and fabulously. But that is just the mask. Inside I feel scared that my 20 year future is the reality right in front of me.  My mask puts on a happy face which we all must do at some point in our lives but the fear inside me is very real.

This is not my usual “I’m going to conquer autism” blog and trust me I will have blogs that are raging with positivity and kick ass mentality. But tonight, the mask has been put away and I needed to let my feelings come out. Rest assured my mask will be ready for me tomorrow, waiting at my bedside but the feelings are still there, behind the mask.

 

Tantrums

I don’t know who tantrums affect more, Miles or me. It’s been three years of tantrums. Some long lasting, others short lived. Some suck the life out of you some are over so fast you forget they even occurred. Tantrums, more or less, rule our lives. They determine if we have a pleasant meal or a torturous one, if night time is going to be fun with giggles or an hour long ordeal you just want to hide from. I would like to think that I can handle any tantrum- I am as I call myself a well seasoned veteran when it comes to tantrums- but in the past week I have found myself hysterically crying after Miles’ “meltdowns.” This is my attempt to face some of these feelings that arise when we (Miles and I) are at our worst.

Tantrums in our life are a lot like lightning- they strike a lot of times without warning and the damage is either very minimal or extremely disastrous. Everyone sees it and some people stare in wonder; others run and duck for cover. In our house, they are a daily occurrence which always leaves us guessing- what is this next hour going to be like? Once we survive a peaceful hour we are grateful but fearful that it was only a brief moment of calm in our lives. It is a constant balance between pushing Miles to be all he can be without rocking the boat so much we cannot function.

            Let’s take a second to acknowledge that all children have tantrums. I have a typical three year old and she has had several tantrums in her day; some outrageous others fairly typical. However, unless you have lived-daily- through an autism tantrum, it’s impossible for someone to truly understand its dynamics.

            When Miles has a tantrum he screams, arms and legs flailing. He repeatedly says, “hold me hold me” but when you pick him up he kicks, claws, and fights his way out of your arms. At home this is usually manageable by putting him in his room, dark, quiet and covering him with a thick blanket. He usually loves the sensation and will allow you to lay with him and sometimes even sing to him. Silence or songs will be broken by sporadic screams, shouts, or him saying a repetition of oral stims that are not really language. Sometimes he sobs uncontrollably in between silences with tears streaming down his face.

A few weeks ago I felt from eyes that he was saying, “help me, I don’t want to cry but I can’t stop.” Of course he never said this but I have an uncanny ability to read Miles’ wants and needs with nothing more than my intuition- if we can call it that. With this look of helplessness, I took a step back and realized I didn’t really know what to do to help him- and that’s when my crying took over me.

            In public, tantrums fall into a whole other category. Miles’ screams are usually the first thing to grab the attention of the surrounding strangers. Followed by him throwing whatever he was holding in his hands. I can’t say that I see people starring (my focus is usually on Miles, my daughter, and keeping everyone relatively safe and calm) but I can feel them starring. Some people make comments others just use their eyes to place judgment. Some shake their heads at me as if I have disappointed society by allowing my child to behave this way- others move on with their business without a second glance. My focus is always on Miles and I try to remind myself of that- no one else comes home with us so who cares what they think, right? Sounds so simple but if you have ever had to use this strategy over and over- it wears you down. I have grown a lot in the years we have had to face public tantruming; I no longer cry along with Miles, I don’t scream back- my plan is usually a simple one: Say nothing and just lead by action. Carry on with what the plan was, ignore, redirect, but no explaining- not to anyone! This becomes difficult when my typical three year old is in tow (which is more often than not) but I have been blessed with many friends who will take over my role with her while I deal with Miles. If I am alone in public with them then I do what I can to the best of my ability.

            At the end of the day- no matter what the tantrum whether it’s minutes or hours long- I know there will be an end at some point. It takes so much inner strength to swallow it day in and day out but it’s not impossible. There’s always a breaking point in the tantrum when I feel like I can’t go on- like I’m going to lose it and I’m going to breakdown (and that has happened, more times than I would ever care to admit) but during the tantrums that I classify as “productive”, I am able to calmly accept that like many things with autism, this too will pass.

            As Miles’ tantrums evolve, so do my emotions towards each event. In my early autism years (right after diagnosis at age 2) I would cry almost as uncontrollably as Miles as he pushed and screamed and fell to the floor because I wasn’t moving fast enough, I didn’t have what he wanted, or I didn’t know what he wanted. I kept thinking it was always going to be like this- this was my fate as a parent to Miles. As ABA therapy fell into place and real progress was being made, I had a false sense that the tantrums would fade and be a thing of the past. But with new successes, new challenges came and so did the tantrums only now he’s bigger, stronger, and knows how to go straight into a full on meltdown. I think now I cry out of frustration and desperation and fear. Fear that he is regressing, fear that he will never ever completely phase out of tantrums. With every tantrum I worry that we are standing still instead of trudging forward. The biggest fear I have is that Miles’ progress will plateau and become stagnant. Tantrums take my heart to the dark places when I ask myself, ‘what if this is as good as it gets?’

            I know I need to conquer the internal struggle that I have with myself. I’ve got to let go and let God as many would say. Even though I doubt this road, I know that for Miles this is not as good as it gets, the best is yet to come- but you can bet there will be many tantrums along the way.

           

The Diagnosis

It’s not the end of the world. It’s just the end of one world. A world you created but then destroyed. It’s not over- just different…as if you never had a plan at all.

 

Leading up to this day we had been with ECI (Early Childhood Intervention) for six months, seen several doctors, specialist, had a hearing test (both awake and sedated), seen Occupational Therapists privately and through organizations, had speech therapy on the regular, consulted with pediatricians, I had become ill with mono (Epstein Barr Virus) as a result of stress and endless exhaustion, and ultimately lived each day knowing that something was indeed wrong with Miles. It sounds ridiculous to think that I wasn’t prepared- but I wasn’t. Not even a little bit. Not at all.

 

We waited at Child Study Center. Miles of course ran back and forth and back and forth in the waiting room touching the walls each time. There were toys but he didn’t play with them- he just ran, carefree. We were called back shortly for the nurse to get a routine height and weight on Miles. These parts of doctor visits were always difficult. Miles didn’t understand why he had to stand still on the scale. He would step on after we forced him but then would just run off. We ended up doing what we had to do for many months- I would weigh-in by myself then I would weigh-in holding Miles (as he kicked and screamed since we were standing still); subtract the difference between the two weigh-ins and you have Miles’ weight! I don’t think they even attempted to get his height that day after seeing the struggle at the scale. Blood Pressure readings were (and still are) out of the question as he will not sit still for it- not one bit. So we headed back to “the room” and waited for the developmental pediatrician. I don’t remember anything leading up to the doctor’s arrival- so maybe it’s safe to say the next twenty minutes were uneventful. The doctor came in- honestly I can’t really remember his face, just his voice- that voice will never leave me.

            The doctor talked to us about our life history and Miles’ history from gestation, to birth, to infancy, and present. All his milestones were documented with approximate dates and occurrences—every infection, doctor’s visit and so on.  It was eerie to re-account how “normal” he was through most of his short life and then suddenly it all seemed to spiral out of control until one day it was if he had never been typical at all. All of this was documented in the 40 plus page application I had to fill out to even get the appointment—this was the first of many occasions I would have to tell and re-tell Miles’ entire life history.

            He then proceeded to evaluate Miles. It went exactly as I predicted… Miles was content until you made him do something other than run and touch walls. The doctor attempted to get his attention- with no success. Miles was actually unaware that the doctor had even entered the room (which was the size of a large pantry).  Then we tried to get Miles to sit down so the doctor could assess whether he could point to certain pictures (like a dog).  I already knew this was not possible but there was a piece of me that kept saying- maybe he will amaze us! Maybe Miles is going to do all these tasks and the doctor will tell us that he’s right on track! It was about ten second prayer that this would happen before Miles was in a full fledge tantrum. He did not want to sit down and he certainly was not going to point to this picture of the dog. Miles wasn’t even looking at the picture he was just kicking and screaming and trying to escape. Tears gushed from my eyes and I wrestled with him on the floor; attempting to calm and focus him. I wanted to scream- JUST POINT TO THE DOG! IT’S THE ONLY PICTURE THERE MILES JUST POINT TO IT! Instead I wrestled with him, my tears silently streamed down my face, I couldn’t wipe them, I just let them soak my neck and eventually fall to the floor. I was defeated again by Miles’ will to just GO and my grip loosened as he sprinted for the door.

            That concluded our “evaluation.” I knew the outcome wasn’t going to be what I thought- and I think then I knew my life was about to change forever. You cannot brace yourself for sudden impact- you just have to absorb it. His diagnosis was borderline severe autism with possible and probable mental retardation; due to his age (25 months) the doctor wrote PDD/ Infantile Autism as his “official” diagnosis for paperwork. All I heard was AUTISM. It was the word I had trained my brain to ignore as this could never be a possibility- or so I thought. The doctor left. I cried and my husband did too. We just held each other. Miles was still running around the room. I remember walking back to the car and going to Chick Fila before coming home to our daughter. February 26, 2010 my life changed forever. It was a Friday so there was no work the next day- just the weekend to let it soak in (I don’t think it actually sunk in until weeks after). For a while I thought that was the worst day of my life…now I have a different perspective.

            The weeks and months after the diagnosis were the hardest months, but most proactive. My emotions got the best of me at the worst times but I was in overdrive as to how to help Miles. What was about to happen next was nothing short of a miracle. Those of you who know us now  know that our story gets worse (way worse) but then somehow gets better (way better).

            The diagnosis was the death of many things. The loss of “what could have been” is a very real and significant loss. Some days it feels like the pain will never go away- and it never completely does.  But this day also brought us a new life with a new perspective, new friends (now so close we call them family), and a new way of thinking. Stay tuned…we spent the next two years fighting our way out of autism.

Hell, Meet the Robersons…

We jumped through many many many hoops- as all autism moms do- to get to where we are today. I wish I could tell you that my description of these events is going to be accurate, but my memory escapes me. Not because I’m old but because I honestly think the trauma of it all has been locked away so tight in my brain that I can never think hard enough to access it. It was literally a blur. This will surely be my most unorganized blog yet because most of my memories are pieces and events that never really sequence together. Thus, this blog will sound a lot like unfinished stories/thoughts/events because that’s how it plays out in my mind.

It is November 2009 and it was my first worst Thanksgiving (I say first because there was a second a year later). It wasn’t horrible because of drama, it was horrible because I realized how fast time was running out. Another year was almost over and  I had an almost two year old who was completely absent from life. The main issue that always stuck out was the fact that he was non verbal, though there were so many other issues. Many children don’t speak until the age of two or three even and are totally neuro-typical. This was not the case with us. Miles was totally unengaged with life. He had no idea who I was or that he even had a sister. Further more people (and I at some points) kept holding on to the idea that he was just a late bloomer.

I filled out the paper work for Child Study Center and waited for my response letter. In the mean time I spent HOURS, literally HOURS on the phone with the insurance company. Attempting to find Miles a private speech therapist and occupational therapists. Well, I learned too many lessons during this point in time and it has turned me into quite the bitter person when it comes to finding services. First of all, NO insurance company will cover anything without a diagnosis (which at this point we did not have). Second of all, almost all private speech and OT services are for people on Medicaid (which we did not qualify for).  Third, once you find an in network provider, in your area, in your price range (IMPOSSIBLE), then you have to be put on their waiting lists (usually longer than 6 months). I called over 35 “local” therapy centers and was turned away for one or all of the reasons above. I felt HELPLESS. I knew Miles needed speech and I knew he needed occupational therapy but now it seemed in a world full of therapies I COULD NOT FIND ANYONE to help. The stress of explaining our situation over and over and over on the phone was enough to break me down on a daily basis.

We even went so far as to get a private OT evaluation from a wonderful OT (paid a fortune for the evaluation….just saying!) just to find out that she did not accept anyone who was not on Medicaid or CHIPs which again WE DID NOT QUALIFY! The frustration level was so consuming I honestly don’t know how I made it through work or life during these months. It was all autopilot, I have no real memories of my kids or life during this time- it was truly an out of body experience.

Through the phone calls and denied claims and cries for help, we learned that we needed to get a hearing test so that Child Study could rule out hearing loss as a reason for Miles being non verbal. First we find a pediatric ENT (ear, nose and throat doctor), make the impossible appointment and go. Only to find what we already knew, Miles screamed the ENTIRE time. He would not let the doctor examine him without being restrained by me, a nurse, and the doctor. He would NOT wear headphones or allow ANYTHING to touch his year. So we tried sticking him in a sound booth and calling his name…he screamed until I was able to sit in the booth with him. Once we did that, someone else finally got to see what I saw. Here we sit in this sound booth, the doctor says his name over and over from all angles: “Miles, MILES, MILES!” And NOTHING! Not even an indication that someone was talking. The doctor even asked me what name does he go by because he doesn’t seem to know his name is Miles, I replied, “he doesn’t respond to ANYTHING, that’s why we are here.” Needless to say I was given the evil eye by every employee and parent in that office due to my child’s lack of compliance and disruptive behavior…. cried the whole way home (me that is).

With the non results at the ENT we really really needed to get Miles’ hearing tested so we were put on a list to go to Cook Children’s Hospital and have a sedated hearing test. Miles would have to undergo general anesthesia and be admitted to the hospital. Another day for the history books, this is truly when the word HELL had a whole new meaning. To undergo anesthesia Miles could not eat past 4AM the morning of the test. So I wake up with him at 4 and fee him his last meal for the day. We arrive at the hospital only to be greeted with waiting, waiting, and more waiting. If anyone reading this knows Miles you know that to this day, waiting is one of the HARDEST things in our life…well during this time it was impossible. Miles screamed and kicked, and cried, and threw himself on the floor ALL DAY LONG. We moved from waiting room to waiting room, unit to unit… all carrying a screaming child (and of course with the whole world watching our “bad’ parenting since we were unable to calm him down). We walked up and down the halls we tried carrying him, letting him walk, letting him play, reading, singing, YOU NAME IT WE TRIED IT. Miles cried and cried and cried. I remember laying with him on the FLOOR in the hospital room just rocking his sobbing body back and forth- tears coming down my face as well. This is HELL I thought, this is it.  Finally the anesthesiologist came in and they put Miles in a gown; I remember he screamed and fought so hard they were unable to get any type of blood pressure reading and after 20 minutes of trying the trained nurses and doctors actually said- we just can’t get a blood pressure reading- we will just have to start without it. They rolled him out on a stretcher, screaming and kicking (I stayed by his side). It took four nurses to hold this 23 month old boy down so they could put the mask on him…I watched his fight become weak and his screams stopped- he was finally knocked out, finally at peace for just a little while. Waiting was agonizing and after an hour or so they said we could come back to recovery to see him. I remember turning the corner in the hall and hearing Miles’ piercing screams– yep he was awake alright.

I went over the hearing test results a million times in my mind– maybe the doctors will say guess what, he’s FINE, he’s just deaf. Oh my gosh how I prayed for him to be deaf. I wished so badly that was the problem. But I  knew it wasn’t- Miles loved music and he ran to the TV anytime you turned it on (even if he was in a different room). Please please please let them say he is deaf …..The doctor came in, “great new, his hearing is fine.” Great news to any parent…any parent but me. This was all becoming a little too real. His hearing is fine…now comes the hard part.

For Cameran

I want to take a break from our pre-diagnosis world and recognize the ignored siblings of children with autism. Every family I have ever met is undeniably incredible- without a doubt! However, I know that having both a typical child and a child with autism frankly SUCKS sometimes. I’m sure there are millions of families like mine and millions of mothers who have done a fantastic job juggling both the typical child world and the autism world. I, however, have struggled tremendously with finding a balance between the challenges my son brings and raising my daughter, Cameran. Now, Cameran is only 2 years old but I often find myself wishing I could explain to her the complexity that follows having a child like Miles.  She is so blissfully unaware (sort of) that not everyone has a brother like Miles…I am waiting for that to fade and for the real challenge to set in. I would think that most moms of more than one child agree that you do not love one more child than the other, but you love them uniquely. I love both of my children very much but if Cameran was my only child and someone asked me if I wanted her to grow up with a sibling who had autism, I (like most parents) would say no. We had no voice in giving Cameran a brother with autism. Though I would NEVER take back giving birth to Miles, I  would never choose for Cameran to have a sibling with autism. I don’t know how else to explain my feelings but I hope you see the honesty in my words.

A lot of my tearful moments (early on and still today) aren’t only about Miles but about the impact that this will have on my daughter. I remember when I was pregnant with Cameran, Miles was only 5 months old when we began telling people I was 4 months pregnant! I was so upset that I had ruined Miles’ life by him not ever getting to experience being an only child. Instead of gushing over his first birthday, I was an exhausted mother of two with a one year old and a two month old– not exactly ideal. Turns out, having Cameran was our biggest blessing in disguise. Children with autism NEED typical peer models, Miles has one 24 hours a day.  As our lives progressed and Miles was diagnosed, my guilt about having Cameran at the wrong time shifted to having guilt for giving her a sibling like Miles.  There was (and still is) a lot of guilt floating around in my heart for many different things.

Cameran has progressed beautifully in her short life. She is always ahead of her developmental milestones and speaks very well for a child her age. But every time Cameran succeeds, it is a small but ever-present reminder that she is YOUNGER than Miles and light years ahead. The smallest things make me feel nauseous instead of proud (guilt, guilt, guilt). We were in the car one day recently and Cameran said, “hey mom look at the horses out there!” I responded cheerfully and pointed them out as well while several tears fell down my cheeks. Here’s my BABY, my younger child, saying something so simple and my almost 4 year old cannot put more than two words together (and yes I know we are moving through this, but this is how it feels inside my head).  I love her so much (I KNOW I DO) but I can’t deny that sometimes I want her to just STOP progressing so Miles can catch up (guilt, guilt guilt).

Now the whole (original) point of this blog was to express my feeling TO Cameran, not to go on and on about my own guilt so I will get back on track now.  There are so many things I wish I could tell Cameran that are far too complex now; but one day (soon) I hope to convey my appreciation for her (though, it could never fully get across). It would go a little something like this:

Cameran,

I have relied on you for SO much during the earliest years of your life. From the time you could crawl, you were helping bring items to me while Miles was melting down–than k you. I remember begging you to put down your toys so you could bring me a diaper, all to avoid another tantrum from Miles for me leaving the room–thank you.  I have let you play alone many many times, so that I could work with Miles on playing with blocks or sitting while I read books only for him to scream the entire time–I’m so so sorry. You have ate dinner at our table alone, more than once, because Miles refused to sit at the table and was screaming uncontrollably in his room– thank you for your independence.  You have sat quietly in doctor’s offices while we hold a screaming Miles down to get examined on many occasions- thank you. I have watched you try time and time again to play with Miles, talk to Miles, and get him to play back with you– thank you for your perseverance, it has taught me more than I ever thought.  The first time I told you Miles had autism, we were in the bathroom taking a bath. You had just gotten out and kept talking about going to Hope Center (where Miles goes to therapy). I asked you if you knew why he went there and you said no. I said, “Miles goes to Hope Center because he has autism.” You stared at me for a moment and said, “No! He’s not autism, he’s my brother”– by far the BEST response I have ever gotten after telling someone Miles had autism, YOU ARE TOO WISE!  You constantly ask, “are you ok buddy?” when Miles is sad. You are his number one cheerleader and absolute best friend.  You will always be younger than Miles but you will always be the one he turns to– for that I am forever indebted to you.  More than anything, thank you for bringing light into ALL of our lives. I cannot think of anyone more special than you.

Love,

Mommy

I Knew He Loved Me, He Just Couldn’t Show It

We were in limbo waiting for Child Study Center to call us and make an appointment. Waiting daily for their call was just short of mental torture. We had to keep on with our lives though at this point, day to day life was almost unbearable. Miles was WILD. He constantly ran and jumped (off of tables, couches, beds, you name it) all over the house. If he wasn’t running from wall to wall or jumping off of any (almost) sturdy item he could find, he was screaming and throwing a tantrum. His lack of eye contact was slowly chipping away at me. I KNEW in every ounce of my hear that he loved me but NONE of his actions showed it. He didn’t want to play with me or any toy for that matter. He flipped through books at lightening speed so unless you knew the book by heart, there was no “reading” going on- just aimless flipping of pages. He couldn’t stack blocks (a skill we worked on regularly at home and with ECI) although my 12 month old daughter mastered that skill in a matter of days. It was so HARD to play with Miles- he didn’t want to play, he just wanted to RUN.  To most strangers (in public) he was an adorable and very active boy. At this point, he was so young that even his tantrums did not seem totally out of this world (at least not yet). The hardest part was when people would say hi to him or ask his name and then try to engage with him; of course he would never respond to any of it and I would always make up an excuse or politely laugh it off and move on.

The smallest things were the most hurtful. I wanted my baby boy to to gesture that he wanted me to hold him- instead of just flipping out!  I wanted desperately for him to kiss me and hug me or at least grab for my hand– all of these actions had to be initiated and carried out by me or they did not happen.  My only relief (temporarily) was that he loved for me to hold him; he even let me sit and rock with him.  These small moments when I got to hold him and kiss him gave me daily strength to persevere through this hell.

I know that many moms of children with autism say they never experienced “negative” feelings and that they just jumped right into action. For me, this was half true. I do feel as if I jumped into action to save my little boy but I harbored (and still do at times) very negative and hateful feelings. I was a horrible friend (and wife) during this time in my life. Anyone who had typical children I tried to stay away from especially if they had boys. I could not bear to see another boy the same age as Miles. My mind would race into a black hole of “what if’s” and “why me’s” and “how come’s.” I could not help but wonder what would Miles be like? What would his voice sound like and what would he like to do? Would he be obsessed with Thomas the Train like many boys? Would he love Toy Story? Would he be funny and out going or shy? I had an almost two year old and had NO IDEA who he was. I was living with a skeleton of my child who ran and laughed and cried but with no rhyme or reason. It was like his soul didn’t exist.  This ate away at my heart and I was so envious of parents with typical boys that I could not bring myself to associate with them.  I was so angry that MY child was stuck in this chaotic world that seemed hopeless and everyone else was sharing stories about the funny things their child would say or do.  I hate that I felt this way, but I did.  I was so locked in my own self pity I wished everyone felt this pain with me; instead everyone went on with their lives and I continued to pretend that I had my life under control.

 

Strap On Your Seat Belt, It’s Going To Be A Bumpy Ride…

It has been a while since I blogged last, mostly due to my own procrastination and partly due to the fact that I was unsure how to share this part of my life with most of the virtual world. I know this part of my life is going to sound very dark, manic, and desolate-which it was- but please understand I am sharing this because most people had no idea that this was occurring. I am not trying to evoke sympathy or sorrow but allow everyone on the outside ( those with typical children or no children) a chance to truly understand where we (our family) has been. Only then will you, the reader, gain a perspective of how awesome our triumphs really are. Strap on your seat belt, it’s going to be a bumpy ride….

 

I left off with the new-found world of Early Childhood Intervention (ECI) taking over our lives. I felt as though this was going to be the cure all in our less than perfect world. As much as I love and appreciate the individuals who guided us with Miles early on, I realized quickly that Miles needed much more intervention than they were willing/able to give.  ECI entered Miles’ life in September 2009. After little progress and increasing tantrums and frustration from myself and my husband I spent my entire Thanksgiving Break filling out paperwork for the Child Study Center of Fort Worth. To this day I think that is one of the best decisions I have ever made; on bad days I beat myself up about not doing it sooner.  The fourteen page application was more than thorough, it asked about every aspect of my pregnancy and Miles’ birth. When I was six months pregnant with Miles, I fainted at work. Nothing ever came of it and I was “fine” soon after but I couldn’t help but wonder ‘is that the cause of THIS?’ Also, the first day we brought Miles home from the hospital he cried for HOURS; six to be exact. We then found out that he had a slight fever. He was taken to Cooks Children’s Hospital and kept for four days. Again, nothing really came of the situation and the doctors again said he was “fine.” But my brain could not let it go; what if all  these things caused THIS (whatever it was).   After hours of paperwork,  locating important documents, and collecting data from the pediatrician, I was finally ready to mail in the application. We were put on a 4 to 7 month waiting list to see a developmental pediatrician.

At this point I was far into denial- Miles was going to be fine and I was over reacting. I would constantly talk to myself and rationalize- tons of kids get help from ECI right? And they all go on to be perfectly NORMAL, Miles was going to be just like them. There was one small “thorn” in my side though- my other child. Let me clarify what I mean by “thorn.” I love my other child and loved her dearly during this time. However, she was a constant reminder of how far behind Miles was. Every time I thought I saw some shred of progress in Miles, my other child would remind me that the “skill”he were working on, was remedial for a child his age.

My daughter turned one the same week I sent off the paperwork for Child Study Center and she was the biggest reality check in our lives. Not only was she waving, giving eye contact, and responding to her name– she was also beginning to say simple words like “mama, dada,” etc.  Miles did NONE of those things. During this time we were working on him SIGNING “more.” Not SAYING “more” but SIGNING it! We worked on this one sign for over five months. Every single day after work I would take Miles and Cameran to the park to swing (which Miles loved). I would stop the swing and wait for him to sign “more” with his hands. He never did so  I would model it and then take his hands and do it for him (hand over hand). I would usually do it 100 to 200 times every time we went to the park. Then we would go back home. This, as you can imagine, took an extraordinary amount of patience from me (patience that I did not always have). It was SO frustrating I would usually cry the entire walk back home from the park. How could my one year old learn this sign after I did it TWICE and my almost two year old still had NO IDEA what to do? What was I doing wrong?  It didn’t help that we were usually not alone at the park and other parents would just STARE at Miles (since he almost always screamed for at least half the time). Sometimes people would ignore him but most of the time people would make comments or ask about his age or JUST STARE at us like we were a bunch of crazies.  Not to mention, my other child was along for the ride as well.

It took five months of me signing “more” hand over hand with Miles at least 200 times a day before he learned how to sign this ONE sign. It was extraordinary when he finally did do it independently for the first time but I couldn’t help think, ‘is this how it’s going to be?’ Five months for just ONE sign? I didn’t think I could do it; I was living in a nightmare and there was NO WAY OUT. There were many many nights when I just prayed for a way out…

 

 

Enter E.C.I.

Here I am…a very organized disaster.  On the surface things were going well. I was concerned about my son but no one knew that I had really hit the “PANIC” button in my mind. Miles was scheduled for his 18 month check up at his pediatrician; I was determined to get to the bottom of this “odd” and obvious developmentally inappropriate behavior he had been displaying over the past four months.

We went to the appointment (both kids in tow) like any other doting parents would do. Miles was extremely hyper that day (as he was most days during this period in our lives) but also in a GREAT mood. The doctor checked his physical wellness and his growth and development was stellar according to her. Now it was my turn for any questions I had about this new and exciting stage in our lives; we were entering into “toddler-hood” which is a far cry from being an infant and supposedly going to be “way better.” I mentioned that he did not respond to his name and I was concerned about his lack of speech. I clearly reported at his 12 month visit that he was saying a few words: ball, dog, mama, dada, all done. I told the pediatrician that not only did Miles not pick up any new words, but the words he once knew, he was no longer saying. To this she reassured me that he was probably working on other developmental skills and that the speech would return and it was not cause for concern. She went on to explain that boys tend to reach physical milestones first and pick up the verbal/language skills later on. Oh no worries from her at all. Speech was fine (I look back on this and wish I had the knowledge and guts to scream at her NO THIS IS NOT RIGHT!). Instead, I sat and nodded while my toddler ran from one wall in the patient room to the other, jumping in between of course.

I also touched on his hyperactivity and the fact that he NEVER sat still. He jumped for hours at night in his crib before falling asleep. He ran back and forth in our living room all day long. He never took a break to play with toys or balls or even to see what the rest of his family was doing. HE. JUST. RAN. ALL the time. Like an attentive doctor, she listened and nodded and asked if he was imitating us. (RED FLAG!!) No, I reported. He was not imitating us. He showed no knowledge of “hi” or “bye bye” or even where he was. HE. JUST. RAN.

I could tell the doctor was thinking. She was still confident that Miles was “normal” and that I was overly concerned and that he was just an active, happy-go-lucky boy with a nut for a mother. She could tell I was uneasy with her lack of concern so she went to get a test (to this day I cannot remember the name of it), more like a check list of red flags for diagnosing autism (this is the first time this word was spoken in relation to Miles). We went through the questionnaire with her and determined that Miles had only three “red flags” out of a possible ten for ASD (Autism Spectrum Disorders).  Nothing to be worried about according to her. Luckily for us, Miles had a slight fever that day so he did not recieve his 18 month shots. To this day we have not vaccinated Miles since he was 12 months old; he will not be vaccinated again- a discussion I will postpone until later on in this blogging journey of mine.

We left the doctor that day with a false sense of relief. The more days that passed, the less trusting I became of the doctor’s diagnosis. It was the first week in September, on my conference period at work I picked up the phone and called the number for ECI (Early Childhood Intervention). I explained that I felt my 20 month old had significant delays and I wanted an assessment. They sent someone out the following week. Miles tested at a 9 month level for almost all skills (communication, language, adaptive, fine motor, etc.)  The only skill he was developmentally caught up on was his physical development (walking, running, jumping).  I was relieved that they had agreed with my belief he was delayed. Miles was set to receive speech therapy, occupational therapy, and a case worker from ECI. I was very pleased (at first).  This, I thought, would be the fix-all solution to everything. They were going to help Miles and fix this glitch in his development. Boy oh boy was I wrong.