Dani & Cameron

Our Journey

When they say parenthood doesn't come with an instruction manual, they really aren't kidding. Add in that in some ways you can probably consider your child "special needs" from birth and you really wish there was a handbook. That handbook is never forthcoming, but the need for it does not seem to lessen.

Our first son, Cameron, was planned. He was expected with joy in our hearts and expectations of a future in which we planned to let him know that he could do anything, that he could be anything he wanted. When I was twenty-seven weeks pregnant our joy and expectations became a nightmare of fear for our child. Cameron was born thirteen weeks early due to a medical condition I was unaware of and due to Cameron's umbilical cord somehow being in a knot at his feet.

Born March 10, 2007, weighed 2lbs 7.8oz, length 14 1/2 in.

For the first thirteen weeks of Cameron's life we did not know from one day to the next what was to come. I now consider this a foreshadowing of what was to come in my life as a parent. Each day is taken as it comes with no clue how the day will turn out in the end. Cameron was born with jaundice and was surrounded by lights for several weeks. When Cameron was a week old we were told that he had a grade 4 head bleed. In the end the head bleed stopped on its on, but left irreparable damage. Scar tissue from the bleed blocked his spinal fluid from leaving the ventricle and spinal taps were preformed numerous times to relieve the pressure until he gained enough weight that the neurosurgeon would perform surgery giving Cameron a shunt to drain the spinal fluid.

The day before Easter 2007 was the first time I was allowed to hold Cameron. Until then we were only allowed to touch him. He had a strong grip and loved to hold our fingers.

We had a lot of steps forward to be followed by three steps back shortly after. I refused to put his nursery together until about a week or two before he came home. I was a terrified mess. I cried when the phone rang and cried when I thought of how I might not bring my baby home. I would not have gotten through that time without my husband, the whole experience brought us closer together. We were told then, even in the NICU that Cameron would probably have learning disabilities from the head bleed. We accepted it and moved forward not caring. Our son would still be raised to believe he could be anything. He was our Miracle, because he had not been expected to make it.

On the day he turned three months old and just two days after surgery, Cameron came home to us. Courtesy of an infection he developed while he was in the NICU, he was on a monitor to alert us if he dropped his heart rate or stopped breathing and stayed on it until nearly his first birthday.
Visiting some of our NICU family. Cameron was 5 months here.
On his first birthday Cameron still only weighed 12lbs.!
Even then he did not like things on his hands. We had to stick his hands in his smash cake.

Cameron was behind developmentally, but we had been warned to expect that due to the prematurity. He began physical and occupational therapy at WestTexas Rehab when he was six months old. Cameron is now six and we still go there weekly and have also graduated speech therapy from there.

When he was nine months old, he started saying his first words. A few months later, Cameron stopped talking and soon after the tantrums started. He refused to learn sign, refused to point, and would sit in the floor screaming and crying until you figured out what he wanted. Strangely enough the cries were somewhat different depending on what he wanted and after a while I learned from the sound of the cries what he wanted. Cameron was silent except for his cries and when he was eighteen months old I finally convinced his doctor that he needed speech therapy. I knew that the language loss was an autism red flag, but was told that he was simply too social and the fact that he would interact meant he wasn't autistic. Cameron didn't start talking again until after he was two and even then it was extremely limited and only one word at a time.

We had enrolled in the ECI program and received extra in home therapy sessions. When Cameron was three years old he aged out of the program and they helped us get him into a special needs preschool class. Within a few months, Cameron began really talking. Two and three word sentences, new vocabulary, and the beginning of conversations began. Our silent world was officially and thankfully shattered.
Labor Day 2010

Unfortunately, the screaming tantrums continued. We had believed that the tantrums stemmed from his inability to communicate his needs to us and thought once he began talking again that the tantrums would phase themselves out. No such luck, they escalated. Our sweet little boy began throwing himself on the floor, head butting our faces, biting our collar bone when we were holding him, and arching backward making it nearly impossible to keep him in our arms.

The search for answers began again. The question of autism was still met with looks of "she's kidding right?" from school teachers and others. In Cameron's class was also Tamara's son, Alex. Looking at Alex and knowing he was autistic I began to doubt myself. I began to take what everyone else said to heart and stopped looking at autism as the answer to what was different about our son and like everyone else chalked it up to the head bleed at birth.

When he was four, Cameron's neurosurgeon said he was old enough and had enough language to have a neuropysch evaluation done. We made the appointment, did the testing, went back for our results and was given the diagnosis of ADHD. I went home thankful. We had a diagnosis, we could use medication and we could get things under control. I was so happy just to have a direction to go in to get him the help he needed. Our happiness was short lived.

The medications prescribed for the ADHD had various and unwanted side effects. The Daytrana patch sent him into emotional crying jags and afraid of everything. Adderall made him so mean and aggressive that I was receiving calls almost daily from his teacher because of him hitting or biting other children. Ritalin seemed to have no effect on him after several months.

I tried taking him to a therapist that specialized in children with ADHD and after a couple sessions and feeling that we didn't quite click I didn't schedule anymore appointments. We went back home to South Carolina for several weeks and when we came back I debated as to whether or not to try another therapist for him. A few months went by and at the end of my rope I tried another therapist, this one specialized in behavioral issues. I went to her office alone to give her Cameron's history and what we were experiencing at home. I liked her immediately, we clicked, unfortunately, at the end she told me she would work with him, but that she honestly did not think she was the best person to help him. She sent me on a path to get into ABA therapy and told me from what I was describing she thought he had autistic qualities.

Really? That word was rearing its head into my life again? I checked into the ABA therapy and found that our insurance would not pay for it without a diagnosis of autism. I was ready to beat my head against the wall by this point. I talked to my therapist about the road blocks I had come across and she said the same thing. She thought he had autistic behaviors too, but she had a solution to my problem. Another person in her practice was a psychologist who diagnosed children and specialized in recognizing and diagnosing autism spectrum disorders. Within a couple of weeks we were testing, evaluating, sharing history and what we experienced at home.

God blessed me the days that we had sessions with Dr. Russell. For years I had attempted to cause Cameron to have full blown tantrums at the pediatrician's office with no luck. You ask why would I do this? I couldn't get the Dr. to believe me when I told her that these were not just normal tantrums and she made me feel that I was exaggerating Cameron's behaviors. Without even trying to Cameron had full blown tantrums like I had not seen in nearly a year at several sessions with Dr. Russell. Leaving that first session, Dr. Russell saw me struggling to get Cameron to come with me while trying to keep him from throwing himself on the floor and keep from getting hit or bitten, and told me when I was leaving, "I will tell you this much, that is not a tantrum caused by ADHD." I may have had a child that screamed, kicked my seat, and yelled hateful words all the way back across town and had to calm down before I could take him out of his car seat but I drove with a smile. Again I had hope. Hope that maybe this time we would get the complete diagnosis and be able to help our son.

In October 2012, I finally had confirmed what I had guessed at when Cameron was only a year old, our son was on the spectrum. Cameron's diagnosis is Autism Spectrum Disorder, Oppositional Defiance Disorder, and Attention Deficit Hyperactivity Disorder. His occupational therapist says he is also borderline for Sensory Processing Disorder and that he has a condition called dysgraphia. Dysgraphia means that his brain doesn't send his hand muscles the right signals to help him understand how to hold a pencil and to write his letters or draw shapes. Because it affects the small motor skills of the hand it also makes it hard to use spoons and forks properly to eat, using buttons and zippers, connect the dots, or even coloring.  

We now have a new pediatrician who takes this Mommy seriously! Do you know what a relief after nearly five years of searching for answers it is to finally be told you were right, that you didn't just imagine all of these things wrong with your child? Our official autism diagnosis is called PDD-NOS. We are still searching for the right combination of medications to help us manage Cameron's symptoms, but we're traveling the right road now. I've learned not to doubt yourself, as a parent you know your child best. As for those naysayers who said my child was too social to be autistic, they overlooked a very important part of that symptom. Cameron is social and loves to be around others, but he is inappropriately social. He just doesn't understand how to interact in the right ways.

Cameron and Carter
 Christmas 2012 

After his diagnosis, it was like a door had been opened to us that had once been locked. Behaviors made sense now, his Dr. immediately began treating for the autistic symptoms, his therapists started taking the diagnosis into consideration when working with him, I began looking for books on the subject to help me understand his needs, and everywhere I seemed to turn I was meeting other parents of children who were on the spectrum.

Through a twist of fate I met Jamie Thomas on a Facebook page designed for our base. Slowly we became Facebook friends and learned more about each other. Several months after meeting Jamie she came to me and several others and told us she wanted us to be a support group for each other. We decided to get together and have play dates and at these we wouldn't have to worry whether other parents would look at us or our children strangely because we all knew what it was like. For us it would be an outlet to get some much needed adult interaction with other parents who knew what it was like. A safe place for our children to play and for us to just be. I loved the idea and a blog was suggested. We ran with the idea and decided since our connection was autism then that was the perfect name for us. The Spectrum Connection was conceived and we all hope that it grows and becomes a community wide support group for others traveling the same road as us. 

Cameron's story in no way ends here, it is really only just the beginning. As strange as it may sound, I am actually thankful for our autism diagnosis. Do not misunderstand, I'm not glad there is something wrong with my child, I am simply grateful that we finally have answers and that while this was not part of the dreams for our child, the reality is that he could have had something far worse than autism. Our son will still be told he can do anything and be anything he wants, he'll just have to work to achieve his goals same as any other child.


No comments:

Post a Comment