I am so passionate about mental illness and other hidden illness is not only because I suffer from two silent illness which are linked for me, to one another; lupus and depression, but mostly because of my 10 year old son, Christian.
Christian has autism and it took 9 out of his 10 years to diagnose him. When he was diagnosed in October of 2010, I felt both relief and devastation. Relief because after nine years I had a name for the turmoil my little boy has been suffering from the moment he came screaming into the world; relief for finally getting the help he needed…and his father and I needed to cope.
Devastation because Christian would have to suffer the stigma, the challenges that come with his intellectual disability.
This devastation was temporary though because as we got further into his therapies and other support systems were established in both school and home he began to improve first slowly then in leaps in bounds, giving me hope and a new outlook for the future.
Because I now know, even though he has his moments that try my frustrations, Christian is a sociable and very loving child that I know will be a wonderful outstanding adult.
I deal with my frustrations, sadness and confusion by writing such as this blog.
So when Christian was diagnosed I wrote about it.
I named it Forever Christian.
It is posted below… I hope you like it.
Two brothers, one in red overalls, the other in green fight dragons, little mushrooms with wings and evil twins while jumping through pipes, hitting their heads on blocks to gain health and special powers all in an effort to save a princesses life in a multicoloured world.
A bizarre world, but it is the world of a very famous video game.
It is also the world that one sweet little boy lives in every day of his life.
To the outside world he is a typical ten year old child.
He loves to run, play and explore.
He loves to torture his baby brother.
He loves the Mario Brothers and playing his Nintendo DS!
He is beginning to notice girls.
He hates doing his homework.
He does not listen to his parents.
However, there is one small difference that unless you are looking for it, you hardly know it is there.
This boy with the sandy blond hair and the big deep blue eyes covered by long dark lashes (that any woman would die for!) and crooked grin and bubbly personality that make anyone fall in love with easily; as I stated before, lives in a world of his own because he has a condition
That little boy is my son.
Christian Peter Traverse came into my world unexpectedly I was only married for three weeks when I found out that I was pregnant with him.
I love that tiny little miracle from the moment I discovered he existed. His dad and I took him on a trip across the country while he was still in my belly.
As we got settled into our new home, we got busy making a nest for our new bundle that would be coming soon. At 16 weeks my love for him was truly revealed when my doctor told me and my husband that they could not hear a heart beat during a routine check up and there was a possibility that he had died. We had to rush to the nearest hospital to get a emergency ultra sound. For the 20 minute ride we rode in terror, terrified that we had lost our baby. He(well I did not know he was a he at that time)may have been a small little being but we loved him the whole universe over.
I was distraught and numb at the same time when we finally arrived and the tech hooked me up to the ultra sound. We held our breath as we waited for his image to appear to tell us whether our world would fall apart or continue. It did not take long for him to tell us that our baby was not dead, that he/she was just fine! in fact our baby was more than fine, he was even ‘dancing’ and moving around inside!!
What a relief!
The Ultra Sound tech even joked with our family doctor who rushed to the hospital to be with us; that he should get his hearing checked. He went on to further quip that our baby was definitely a Newfoundlander because he was doing the jig.
The rest of my pregnancy was thankfully uneventful.
On April 6, 2001 at 5:19 am, after three long days of labor, Christian Peter Traverse came screaming into the world.
I joked that since I screamed him out rather than pushed him out, he was continuing the pattern for me!
Well, little that I know that those screams will gradually get worse and more frequent.
I did not truly notice that there was something seriously wrong with my baby until a few months in those cries turned into full blown very scary squeals that the doctor assured me was not colic.
When Christian was not scaring his father and me with his horrific screams; he was a very pleasant baby to be around. He was developing quite normally. He hit all his milestones at a normal rate, ate and drank, and played just like any normal, happy full of life baby.
It was during these times that all was alright in our little world.
However, when, out of the blue he would start to cry which would quickly turn into a painful scream…our world became all confusing and frustrating.
I know that every new parent goes through the adjustment phase that they get so frustrated when they do not know what is wrong with their baby and that we all wish our babies could speak our language clearly so they can tell us exactly what is wrong; but as Christian got older and could speak, even to this day he would not tell us what was wrong with him.
We call his name and he will not respond even when he is in front of us.
There is nothing as scary as when your child disappears from your sight and when you call out their name, there is no answer!
Christian always gives us that scare. When we look away, even for a second and he is no longer by our side the first instinct is of course to call out his name. With Christian, that does not work, so we have to go searching for him until we find him.
It is heart stopping for those moments when he is no where to be found!
Finally though, when we do find him, usually hidden under some obscure space, when our hearts start beating again, he is met with a mixture of relief, anger and frustration.
No matter how much Christian frustrated us with his ‘episodes’; nothing is as frustrating and maddening as when the people who you entrust with the health of the most precious gem in our lives not believing that something is wrong.
I remember going to our family doctor, practically in tears begging him to help us figure out what was wrong with my child, only to be told not to be so foolish there was nothing wrong with him, he was only doing what normal child was doing and that he would get over it; and for me not to be so sensitive and ‘blowing things out of portion.
This stung and angered me so badly, as it brought me back to when I first gave birth to Christian in Alberta.
Not long after Christian’s birth, I fell into a deep depression so dark that I thought I would never see light again.
Everything seemed hopeless. I did not want to see anyone, do anything. All the joy disappeared from my life.
I could not find joy in my newborn son.
I went about my day mechanically. I feed, bathed and done all the necessary things that were needed to care for a baby; but I did not do all the joyful, normal things a new mom is supposed to do with her baby.
I did not cuddle him, or play with him. I did not kiss him or hug him.
As I said before, Christian was a very bubbly baby when he was not having an ‘episode’; and not even his smiles and laughter could bring me out that deep dark place.
When Christian began one of his screaming marathons, I have an instant desire to throw him clear across the room or strangle the life out of him, just to get him to shut up.
I know all parents go through those moments that when their child is crying non stop that they lose their minds and want to do that child harm all in the effort to get them to stop; but with me, I am ashamed to admit to this now, but in my state of mind at the time this action seemed normal, justified even; I actually threw my 6 month old son across the bed, hard.
This was the first and only time I committed such an awful act, because after I did this, and though I was still in my dark fog, I realized that I did something very, very wrong.
He stopped crying and I was fortunate that he was not hurt in any way, (he checked fine at the doctor)but this was a wake up call for me to do something right away before I do something I will terribly regret.
My family doctor referred me to a psychiatrist to help me cope.
The first appointment was spent getting my background information and as to why I was feeling the way I was.
We scheduled a second appointment.
My second appointment with this doctor began rocky and the duration did not get much better.
He asked no further questions only to tell me that after reviewing his notes from our initial session, he had concluded that I did not need any further counselling because he felt that my problems where not significant enough to warrant any effort on his part. That since I came from a stable background, with plenty of emotional support, counselling was not necessary. The people who he counsels come from a background where they are abused, physically, mentally and sexually. Are addicted to drugs and other vices. People with my background can not get depressed because their are no factors that can contribute to it!
He then ushered me out of his office without another word.
I guess threatening my child’s life was not important enough!
I been hurt and angry for a long time after that.
Luckily though, I found the help I needed through a wonderful support group that my family doctor set up.
The support group was lead by a wonderful brilliant and compassionate psychiatrist who told me that my depression was not a clinical form of depression but a depression brought on by too many life changes happening the one time that simply emotionally and mentally broke me.
To be clear, in a single year, I was married, found out I was pregnant three weeks later, moved across country, thought we lost our first child, moved five times, lost two jobs because I was pregnant, gave birth, my parental grandfather passed away, then two months later, my maternal grandmother died where I could not fly back home to say goodbye….
Okay, time to take a deep breath!!!
As the doctor stated, no wonder you cracked!!
However, in time, with his help and with the help of my new friends, I found my way out of the darkness.
I got better, but my baby did not.
Alberta is a beautiful province with a lot of nice, caring people, but it is a lonely place when one is by herself all the time with her husband working, her sister in law being the only family near but a half an hour away and working her own long hours; and left alone with a baby, it can get to you. I may be better, but I was terribly homesick and so was my husband, so with three years in, we decided to go back to the hills we call home.
Newfoundland is the only true home for us!
It would be a long time more before we found out what was really going on with Christian.
It took the efforts of his grade one teacher to get the ball rolling.
Christian started in grade one to show unusual behaviour in school.
He began to become very, very clingy. He was never secure in his peers and his teacher’s affections for him.
Multiple times during the day he will constantly ask his teacher “Do you love me?”
He will interrupt all his classmates conversations and play time and get into their personal space by doing things like hugging everyone even when they did not ask or wanted to be hugged.
He could not sit down for a moment, always paced around the room.
He could not concentrate and had a hard time listening even to the simplest instructions.
Grade one however, was only mild and just the beginning compared to grade two.
This is when the flood gates began to open!
Suddenly, my sweet little passive boy became very aggressive with his classmates; pushing, shoving and hitting.
HIs insecurity about adult affections continued to escalate.
No matter how many parent/teacher/vice principal meetings I had, to find solutions as how to handle this new sudden, aggressive, violent behaviour, everything from setting aside some private time, to assigning a student aid, nothing really worked.
Then, in May we faced another medical scare.
Christian woke up that morning with a pain in his stomach; though he did not act like he was sick, I decided not to chance it and kept him home to rest.
He spent the morning not acting like he was sick, playing his favourite Wii game, with his toys and watching his favourite Television shows. However, right before lunch, he said that he felt really tired, so I let him lay down on the couch and covered him up. It did not take long for him to go to sleep.
I left him sleeping and went to the washroom.
When I came out, I checked on Christian to see how he was doing and almost instantly I realized something was wrong.
He had gone deathly pale, was limp and when I felt his forehead he was burning up! Plus when I tried to get a response out of him by first lightly shaking him, then calling his name, there was none and his eyes had rolled back in his head.
I called 911 right away, suspecting a seizure.
I remained as calm as I could, but inside I was so terrified!”
When the ambulance came, I answered all their questions as best as I could.
By the time they arrived, Christian finally came to and was slowly coming back to himself.
I became worried again, when his nose started to bled profusely once he was in the ambulance. The paramedic told me that this was the good sign that it meant that the brain was releasing pressure.
When we got the the Janeway ER it was then a flurry of tests and waiting, until the doctor arrived and told us that Christian had suffered a fever induced seizure and though he was going to be regularly monitored, there was no permanent damage and was going to be fine.
Though we knew deep down Christian was going to be fine, we still could not help but to feel anxious whenever he got a fever and we watched him constantly.
He never did get a grand mal seizure again but he had several absentee seizures; these are tiny little seizures in the brain that made Christian without warning, “blank out” where he would stare off into space, become unresponsive and when he came out of them he would be disoriented for several minutes.
For awhile things with Christian continued on an even keel. We went through the motions of his ups and downs; his good days and bad days.
Once school was over his good days became fewer and fewer and his ‘bad’ days slowly began to take over. His aggressive tendencies often came more routine as he pushed and shoved his daycare playmates; said unkind words to them and refused to listen to his caregivers.
Then when he was confronted with his bad behaviour he would try to turn it around by berating himself.
Christian could never hurt any other child any worse than he could hurt himself.
Yes, during this most difficult time in our lives, he did hurt several of his peers but what he would do to himself was far more harmful once it was pointed out to him what he did was wrong.
Once he realized that hurting a friend was the wrong thing to do, that his friends could be hurt just like him; he would hit himself repeatedly, by either pulling on his hair, scratching himself until he bled or punching himself.
However, the worst self punishment he did was when he hit another boy in the face, injuring his eye in his day care. I was not present for the incident, but it was relayed to me by a co worker who was told by a child who witnessed what he did.
After he realized what he done, that he really hurt this boy, he went over to the sink, filled it with hot water and emerged his whole head in it in an attempt to ‘burn his eyes out’ as punishment for hurting his friend.
I was just grateful that the water temperature was not high or Christian would have received some serious burns!
Things just got worse from there.
In October, Christian had to deal with his first introduction with death when his paternal grandfather passed away.
Christian could not grasp the concept on why his beloved Poppy “Plete” was no longer around for him to play with, to give hugs and kisses to or to share a cup a tea with when he went out to Ferndale to visit.
He asked many questions, many tough to answer in a way that he could understand, but even though we did our best, he still could not understand why Poppy “Plete” was not at his house anymore.
Even to this day, when he goes to visit his grandmother, he would every now and then, ask why his Poppy was not in his room, sitting on his bed waiting for him to come play with him.
The loss of his grandfather Traverse set him spiralling into even more unsettling behaviour.
He spent the next few months stating that he wanted to join Poppy “Plete” in heaven and he often mentioned ways on how he could get there! Some where harmless, creative and funny like growing wings to fly up, or getting on hot air ballon, but others were disturbing like taking a razor blade to his wrist and cutting himself!
Again, thankfully, his doctor reassured us that he only spoke of these things not out of thoughts of suicide, because his brain did not comprehend what death really was; that he was probably just saying these things because he heard them somewhere else.
Then, somewhere along the way, Christian seemed to improve, step by step.
Christian through the reference from his school, was sent to a team of specialist who assessed and treated kids like Christian at the Janeway children’s hospital.
The team consisted of a psychologist, a developmental pediatrician and a occupational therapist.
At first he was diagnosed with ADHD and was prescribed a medication.
This medication worked at first, it calmed him down and let him focus more, so he did well in school.
However when the medication lost its effectiveness, his doctor increased the dosage.
Again, for awhile, the medication did work but soon Christian started having terrifying nightmares, would not eat and became restless.
This went on for weeks until his doctor took him off the medication and within days he was back to normal.
Currently, we decided not to put him on any more medication unless really necessary.
At the same time, we began seeing an occupational therapist for Christian’s sensory issues.
From the time he was a baby he could not stand certain even simplest touches send him into struggling violently to get away or to scream loudly.
As he grew, this sensitivity to touch expanded to react negatively to certain noises such as hair dryers, vacuum cleaners, and sirens to name a few; as if these simple every day noises caused him great pain.
He was afraid of heights, not of high places but of areas that did not seem all that high to everyone else like steps.
He loved the water, but as his friends dived off the side of the pool with fun and ease, he stood terrified, frozen until he was helped down.
Even a simple trip to the salon to get his hair cut were ordeals. Even to this day, every time we take him to get his hair cut his father and I have to remind the hairdresser to only cut his hair with scissors, no razors, no hairdryers!
The one time the hairdresser forgot was a disaster.
She had made the mistake of turning on the hairdryer which instantly sent Christian into a uncontrollable fit of screaming, struggling, hitting, begging to be set free. We had to quickly remove him. It took well over an hour to calm him.
His sessions were frequent for the first year and a half, he saw her every month. For an hour at each session, his therapist would work on not just physical exercises that were designed to improve his walk and his gait, but with his writing, reading and sensory issues.
She taught us exercises that included a technique that used a special brush and joint compressions that would lead to Christian becoming more ‘aware’ of his body in his personal space and become less sensitive to day to day touch.
At this date, while he now only sees her every couple of months, he has made incredible progress.
Though he will still be sensitive to certain touches and sounds, it is so wonderful to see that he can now jump off small steps carefree, off the side of a swimming pool with his friends and even on and off a doctor’s exam table without help!!
Progress comes in waves, sometimes high, sometimes low and sometimes it stalls.
In fact it becomes worse.
After being our one and only baby for 8 years, Christian became a big brother in December of 2009 when we welcomed Brandon Gerard Avery Traverse into the world.
While we were celebrating our new blessing, Christian was silently fretting, becoming lost and confused.
Long before the diagnosis of autism, Christian thrived on daily routine that could not change, not even a little.
When, as it would in life, the routine changes, it would cause him unexplainable grief and confusion.
He was not prepared to handle even the littlest of changes, doing so always caused him distress.
So, despite our nine months of preparation for our new addition; explaining that mommy and daddy had to go to the hospital to get his baby brother out of my belly, he was not prepared for when it actually happened.
My mother had come in from Dunville to take care of Christian while we were at hospital, a fact that he was also prepared for, but yet, when he came home from school to find me and his dad gone, he became very distressed believing that we were never coming home.
My mother relayed that he cried so hard he lost his breath, and he began to hit himself over and over.
It took everything in her to convince him that we were indeed coming home, this time with a new baby brother.
Nothing worked, until both his father and I were able to speak to him ourselves over the phone.
Two days later when he came to visit to see his newborn brother, i saw a mixture of pure happiness about seeing us again and confusion about the little being in the basinet next to his mom.
It took a long time after our introductions to his new brother for him to even look at him, let alone to come near Brandon, but once he did he began to warm up.
The adjustment period took a long time to kick in for Christian, while he hugged him and kissed him, he still did not know how to be around his brother.
He would often hit him often in his tiny head, haul his arms and legs and attempt to throw him when he picked him up with supervision.
The worst of the hurting though was when Brandon would cry and Christian will attempt to stop him by trying to smother him with what ever was around, most of the time it was his hand.
I tried my best to include Christian in Brandon’s day to day care. Some times he would be a wonderful helper, others he wished to do nothing but to sneak in a smack here and there before retrieving to his room to play his DSi.
I guess one of the most frustrating things with discipling Christian was not the fact he did not listen but when myself or his father did, he would look up at us and laugh like he did not take us seriously.
Christian has spent years living in a world of his own, mostly in a video game world of Super Mario brothers believing that every one and everything he did (and does) is related to the video game.
But nothing brought this fact out more out in the open is when one day while we were out for a walk and Christian wanted to push his baby brother in his stroller. We were on a incline and I was ‘assisting’ with the pushing by keeping one hand on the handle of the umbrella stroller; when Christian out of the blue decided that he wanted to do it on his own. I would not let him do it yet because we were on a hill and wanted him to wait until we were on a flat surface.
He suddenly pushed my hand away and proceeded to run really fast with the stroller and then letting it go!
I took off in a run, desperate to catch the stroller before it went into the ditch!
I caught it just in time, thank god!!
When I asked him why he would do such a thing, his simple explanation was that he was Luigi, his brother was baby Mario in his baby stroller mario kart and he was winning a race. I told him that Brandon was not baby mario and that he could have got badly hurt.
Christian responded by saying that there was no way that he could have gotten hurt because another character in the race would have lifted him up and saved him!
We would later find out that is the reason why he hurt his brother from the time he was born until now. He believes he is playing his video game and no one can get hurt.
His agitation grew more and more since Brandon’s birth despite our efforts to show him that we love him as much as we love Brandon.
Frequent meltdowns became a multiple daily occurrence both at home and outside of the home.
His meltdowns consist of uncontrollable crying that escalated into screams, red faced and hitting himself in bouts lasting anywhere from five minutes to an hour. Sometimes I was able to calm him, others I just had to ride it out until he stopped on his own.
Anything could bring on a meltdown; from taking away his favourite DSi as discipline for a wrong doing or not being able to win at a favourite outdoor game.
But for Christian the most cause for a meltdown is when he feels he has to go the bathroom to do his pee and can not.
There is no physical reason to explain his frequent trips to the bathroom or why he feels he has to go so often that there is no possible way to do his pee; but to him if he goes to the bathroom every five minutes then he has to pee every time!
It is hard to hear his cries of anguish, to see him hitting himself in his crotch so hard in an effort to harm himself;but when he can not be calmed down, it has to run its course.
Once it is over, it is over.
Until the next time he has to go!
Just as we thought we were at our wits end, my husband and I finally got the news we have spent 9 years to hear.
He was diagnosed with High Functioning Autism in October of 2010.
I cried not with sadness or grief, but with pure joy.
The relief on my husband’s face was a wonderful sight to see!!
I heard from other parents who’s child was diagnosed with ASD (Autism Spectrum Disorder) that they were so devastated with the diagnosis that they grieved as though they had lost a loved one, it wasn’t until they learned more about the condition that they realized that it was something that was going to be hard but doable and with help their child would be okay.
All we could think, all we could see was that beautiful bright light at the end of a very dark tunnel.
Someone believed us! It had a name! There was a slew of resources and people out there to help him, help us!
Christian is going to be just fine!!!
It has been five months since that day and our lives had been a flurry of so much information that I feel that I am going to burst from the overload!!!
Our doctor threw us a lifeline not just with that diagnosis but with an introduction to a group that are added to our list of team of blessed saviours.
The day we walked into the Autism Society of Newfoundland and Labrador(ASNL) aka. Elaine Dobbin Centre for Autism; my husband and I felt nervous and unsure about the journey we were about to take. Christian however felt none of that, he waltzed right in just like he had been there before and instantly made himself at home by walking up to one of the staff, introducing himself and seeing there was another boy there, asking if he could go in the conference room and play with him!!
We met with the program director that day, Jason Geary who was the first of our ASNL saviours.
We learned all about what they did at the centre and what they offered and gave us a tour of the facility.
It did not take long for us to realize just how wonderful this place was going to be not just for Christian with its therapies, programs and social get togethers with other children with autism, but just how wonderful it was to be for us.
They hold monthly parent support meetings and the support we get from hearing from other parents that are going through similar circumstances as us is informative and enlightening, just to know we are not alone.
Though I stated earlier that we would not put on any more medications unless it was necessary, the time had come for that to come to pass.
While he continues to improve physically through his therapies, it is his mind that remained to be unsettled.
Christian spent 24 hours a day highly agitated, quick to anger at the slightest personal question such as how he was feeling.
He hardly slept because of frequent nightmares.
He paced all around the apartment non stop and was a disruption to his classroom, often getting up and roaming around or even leaving.
He could not sit down to eat and got frustrated very easily over the simplest things, like not getting a drawing a picture right, etc.
He was a restless child.
I mentioned this to his doctor during a recent checkup and recommended that he start a low dose medication that would help calm his mind.
Though at first hesitant, considering our last attempt to medicate him; after thinking long and hard, my husband and I agreed that something needed to be done to calm Christian’s mind so he could return to living as normal of a childhood as he could.
It took a while but as his body is getting used to this drug we have seen improvements.
He now sleeps soundly throughout the night, with only an occasional bad dream.
While he still, and will continue to experience frustration, agitation and restlessness from time to time, we are now seeing an significant improvement and see him returning to the calm loving and fun boy he once was.
While,we and all parents with children with Autism will always continue to fight those who are still ignorant to this condition, seeing only the disability, refusing to understand it so they can’t see beyond it and see the beautiful, creative child in front of it; will take joy in the extra special gift god gave us.
Every day Christian continues to challenge us, pushing us, frustrating us. However when he does do this, I remind myself (as does his father) that as frustrated as we are, I can not imagine just how frustrated it must be for him. He is struggling right along with us. After all he is the one with Autism. It is something he will have and deal with for the rest of his life. He is the one that has to suffer the stares when he is doing something they think is weird, the rejection from his peers when they refuse to play with him, when he does not understand why he can not go out to his grandmother’s everyday, why school is so hard, why his friends can understand what the teacher is saying and he can not or why his baby brother will not stop crying and stop hurting his ears!
We try everyday to instead, look at him, just as he is. A kind, loving, caring forgiving soul that loves to draw, is super creative and imaginative, loves Super Mario, Phineas and Ferb, has a crush on Sam from iCarly, loves to swim, and dance music.
His smile and laugh is contagious, there is quiet wisdom behind those baby blues.
His hugs are healing, from when those rare moments when he does sense another’s sadness, and though he may not understand why that person is sad, he will still walk up to them and put two arms around them and give them a big loving hug and tell you not to be sad, that he is here now, he loves you and that everything is going to be okay. I can not speak for the others, but whenever I do receive these little miracle hugs and his honest, unconditional words of pure love and affection, I feel better!
It is these and many numerous other qualities, not Autism, that make up Christian Peter Traverse; qualities, gifts and ideals that would always be, forever Christian.