Monday, October 7, 2013

Where to begin.....

How It All Started

I guess the easiest way to begin is well at the beginning. I will go ahead and introduce myself real quick. My name is Dominica and I live in Seattle,Wa. I'm towards the end of my 20's and on marriage number two. I work in retail and for the most part I like it. I frequently use "run on sentences" and probably improper punctuation. I'll ask for forgiveness for that now. I met my husband Justin back in 2009 and even though I was still going through a divorce and although I was desperately trying not to be "in love". With him, I couldn't help it. In April 2010 we began a relationship by June we were living together and by the end of that month we were trying to conceive. Pretty fast huh? Well we fell madly in love and he was fast approaching his 30's and I was going through some medical things so we decided "Hey we want to get married and have a baby. Why not start now?" I became pregnant in September 2010 but wasn't positive about it until October. We were ecstatic. We married January 23rd 2011 and on June 12th 2011 Colton Edward was born.

Ah here we are: the true beginning. My sons first day of life also felt like the first of mine. It was like "all was realized". The first moment I set eyes on him I knew my life was just starting and that it never would be the same again. I didn't know how right I really was.

Labor was difficult as it is for all women. Ten days before my due date I started to throw up everything,even water. We went in to the hospital and I began to run a fever they decided that was a good reason to start the pitocin. For all of you who have experienced it,  you know what I mean when I say it is no fun at all. I opted to try and have as natural of a birth as possible. About six hours later and with not much progression of dilation my son went into "distress". They immediately advised me to have an emergency c-section. I was really hesitate but my doctor explained that this could mean a number of negative things such as the cord being around his neck. Naturally I agreed to the procedure. I was still adamantly against the epidural. A little over an hour later my son arrived. 6 lbs 12 oz and 19 inches with a slight jaundice. Once they stitched me up and cleaned him up I immediately started nursing him. He was a natural. The nurses nicknamed him "The breast feeding Champ". I was already so proud. After a three day stay and lots of chafing of nipples (sorry for being explicit) we went home to my moms. Since I had a c-section and my husband wasn't too experienced with babies we thought it would be a good idea. It was during this first week stay that I noticed my son was using nursing more as a means for nourishment than bonding.

Some of you may be thinking "oh she's one of those mothers,the ones who read too much into things". I have to admit,I am not one of those mothers. I said nothing to no one and in fact questioned myself that maybe I thinking too much into it. So I let it go. Fast forward to the sixth week of Colton's life. He still hadn't smiled. Sure he had those "gassy smiles" but not a true smile. That came at about eight weeks. Again I let it go because I thought I was over thinking everything. I should also note that just a few weeks prior we discovered Colton had colic. 

For those of you who have experienced colic you know the chaos and emotional toll it can take. I had decided to take three months maternity leave but after four weeks my husband went back to work. To graveyards. Colton cried from 10:16 pm to 3 or 4 am every night for four months. So many nights of pacing back and forth with him,trying warm baths,playing Enigma songs hundreds of times over. With colic what works for ten minutes of silence one time doesn't work the next. It's safe to say I was having the "baby blues". Thankfully this didn't last forever. Granted we only had about a one week break before the teething began but it was never that bad.

As the months flew by Colton hit all his milestones right on time. He still had a horrible time going to bed, that really didn't change until he was about twelve months old. Even to this day it can take about twenty minutes to get him down, at this time he is almost 28 months old. He said his first word at ten months. "Mama". After that came "hi", "kitty", and "outside". I loved hearing him talk and babble. He walked at fourteen months, a tad bit late but not too far behind. I continued to nurse him until fifteen months and by then he was only whispering. This is where things became a little alarming.

At fifteen months Colton stopped talking. Completely. Of course I became worried but comforted myself by thinking "hey, lots of kids might stop because they are perfecting their skills" or something like that. I didn't hear him say another word until he was almost two. By eighteen months he at least was shaking his head for "no" and a month later he began finger pointing as means of communication. When he did talk again it was garbled and very few words. "Uh oh","wow", and "oh yeah" were the extent of his language. I was still concerned but a little relieved by this. At his eighteen month appointment my husband and I had expressed our concerns and were referred to a "early signs/birth to three" program. They in turn told us they couldn't properly evaluate him until he was two. So we waited.

At two years old Colton finally said a clear word. "No". We this time pleaded to his doctor to refer us the Seattle Children's Autism Center. Yes, we had come to believe that autism was maybe the best explanation to what we were seeing.

I should probably take this moment to explain the signs we found alarming. Other than the loss of speech/garbled limited speech we also noticed our son wasn't playing or interacting like other children. He was afraid of everyone except my husband, my mother and me. He was especially afraid of other children. We couldn't go to a park if there were other children there. Our son would scream and thrash about if there were. He had also began to become obsessively attached to certain toys,parts of toys and even songs. He didn't play with toys the same way other children do. He would spend hours lining up trains, the same way and pattern each time. He would become very upset if he or they were disturbed. He didn't show us much affection. We felt as if we were forcing him to hug and kiss us. He didn't want to engage us in play, he preferred to be by himself. These are realistically only a few things but certainly enough to warrant our concern. His doctor agreed and put in the referral.


We contacted the autism center and were told it was about a three month wait for an evaluation. Thankfully while I was on the phone with them there was a cancellation. We had an appointment for August 7th 2012. We met with a nurse practitioner who got his history and observed him a short time. She found that there was sufficient evidence to see that there were indeed symptoms of autism present. We were then informed it was a nine month wait to be seen and officially diagnosed. We were upset to say the least over learning this. She had also suggested the "Birth To Three" program so we called and made an appointment with them for September 12th 2013. 

Birth To Three Aka "Skip"

We went to our local "Skip" office and had an evaluation done. It is good to note that they do not formally diagnosis. They only look for developmental delay. Colton reached, if not exceeded the criteria to qualify him for the program. It took about another month to begin the therapy, we are getting the first therapy session tomorrow. It is also good to note that at this time we had sought out another center to receive an official diagnosis and were about to get it.

The Diagnosis

We had Colton tested at The Center in Federal Way this occurred over the course of two appointments. One to get background, the other to observe and "test" him. This was a very trying process to go through, I felt like we just had to sit there and talk about all the things our son couldn't do. It was just so much..negative. So much crying,feelings of depression and confusion at times as well. We had  figured that it might be a good time to call our insurance and ask how autism related therapy was covered, just in case. We were angry and devastated to learn that they would NOT cover anything related to autism whatsoever. We then decided to check out what the state could offer. Again, we got hit with "we can't", apparently because my husband and I had tried to create a "modest" life for our son they refused to help, even though our insurance company turned their backs on us. This create so many feelings in me I can't even begin to describe them. Although we hadn't received the official diagnosis yet I knew in my heart that Colton is autistic. Sure enough on October 3rd 2013 we received the news. They placed Colton at level three(most severe) but due to his age they felt it appropriate to clinically write in the report level two. Even though we were expecting this it's like with anything else, you just can't prepare enough. What has followed has been a range of emotions. From stress to exhaustion. We will go forward with treatment regardless of the fact that it will all be out of pocket. It's worth it for our son. We don't wish to "cure" him, we just want him to have the tools and help he will need to navigate life. We wish for the world to accept and respect him.


We have a long road ahead and while I'm not sure what exactly it is that I am trying to do here at the very least I am telling our story, his story. This blog is intended to come from my views. That means that if you are here to preach or push your opinions please leave. This is a place for story telling, for kindness. I don't care what your beliefs are, what you think of autism. If it's causes are vaccines,gluten etc. All are welcome here. Preaching and hating are not. I believe just as every child is different every parents experiences are different and every possible cause that may be for that child are different. In my own experience I'm keen on believing that my son's autism has been present since birth and that there may even be something there genetically. See I fall very slightly on the spectrum myself. All I can tell you that I know for sure is that Colton has autism but it does not have him. I will do anything for my son and to me he is perfect. I think this may be a good place to stop for now. More to come later. Thanks for reading. 

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