I am going to put a small disclaimer in this post. These are MY beliefs. This is MY journey. I am sharing my journey with all of you in hopes that you will gain a little more understanding on my son's conditions and how they affect our family. I also do this because many people have reached out to me because by sharing this crazy journey they have somehow found inspiration or hope to fight their battles. Some of these people are right here in this community and some of these people are complete strangers to me. So, I keep going. Sometimes it's pleasant and sometime's it's not. I don't expect everyone to agree with what I have to say. However, this is real life folks. I do not sugar coat a thing here. In order to understand my journey I believe I have to be 100% transparent.
That being said there are many, many theories on the ever controversial autism subject. I hate autism. I absolutely hate it. I hate the subject. I hate the condition. I hate that is affects so many people and no one understands it. Hell, I don't even completely understand it. It's exhausting, awful, terrible, and happens to affect someone I love with my entire heart.
Here are the facts.
Parker did not get autism because I was living in a polluted area or ate certain things when I was pregnant. Parker did not get autism because I had him vaccinated. Parker did not get autism from his dietary preferences. Parker did not get autism because we were bad parents.
The best doctors in the state feel fairly confident that Parker got autism because he suffered a traumatic brain injury at birth. Our sweet boy was born with a Grade IV Brain Bleed and acquired Hydrocephalus as a result. He has had more brain surgeries than birthdays. How can a child who's brain is so complex and healing not suffer some consequence?
He has been high risk for autism his entire life, a fact that we did not know until recently.
So, right when the storm settles and the rainbow starts to appear again something bad happens. Another storm was on our horizon and it would be earth shattering and just as devastating to hear as all of the other diagnosis we've heard. It never gets easier.
It. Never. Gets. Easier.
I have become numb in many ways. You sit me down and show me where he is developmentally and where he should be...doesn't phase me. You take his blood or start an IV...also doesn't phase me. I've heard his cries and screams because of medical procedures or just therapies he didn't want to do. I've become numb in many ways to all of that. I am so not numb with this. I feel every feel from the top of my head to the tips of my toes. This diagnosis phased me.
It shattered me.
Parker has been in various therapies since he was 6 months old. I have always known he wasn't like other kids, thank you Facebook. Of course, I knew why. He's been through so much in his short life. There was always something about him that felt off even with Hydrocephalus. Mom's have a gut instinct and my gut told me he had autism. I first felt it when he was 1 year old.
Parker had been followed by the university hospital after his NICU stint. It was there that they would monitor his development every so often and give us guidelines. Well, right around 16 months she saw some red flags and sent us to the center for disability and development. I knew. I just KNEW. I started bawling my eyes out.
"Caitlin, you cry. You can and should grieve for the child you thought you were going to have and the child you actually have. You can grieve for him and his future. It's okay," she said.
At that point I had not once grieved. I didn't think I should. It's not like he was dying, but my hopes (at that time) were dying. I mean it's awful to say, but they would never be a possibility. I know that now and I am still learning how to be okay with that. Parker's life was going to be so hard. Our lives were going to be so hard. It sucked and still does suck to be honest.
Well, at that appointment they told us he did not have autism! We were shocked! They said he was just delayed and had some sensory seeking behaviors, but it wasn't autism. I was relieved, but at the same time, super skeptical. Of course, I am not a doctor and sometimes I like to pretend I am, but we all know that I have a business degree. A business degree does not make me a medical doctor, now a black belt in Hydrocephalus maybe....
Fast forward several agonizing months later and we did get a doctor who like felt something was off. Parker's therapy never stopped in between appointments, but he just kept regressing right before our eyes. Was he being naughty? Did he not feel well? Something was definitely off.
So, in the same same clinic, same department, we met with a Neuro Psychologist and we were meeting him in hopes of some learning disability diagnosis. He started the test with Parker and I knew instantly he saw red flags. He went and got a different test booklet. Me in my ever stalking and research crazy personality recognized the booklet. It was a test administered to children Parker's age to help diagnose autism. Not going to lie, I had already given this test to Parker at home through the help of a website. He failed. I knew he was autistic going into this appointment. Tears instantly filled my eyes and my husband looked at me like I was losing my damn mind. I knew it! I knew this was coming.
He "diagnosed" Parker as "High Risk" for autism. The doctor said he was going to be conservative in his diagnosis because of the trauma he had been going through. He was just 2 years old at the time. Parker had brain surgery a couple months before his second birthday and then right after his second birthday what little vocabulary he had was gone. It seemed like he was constantly sick, constantly getting new teeth and the poor kid just wasn't himself. The doctor wanted to give him more time.
Parker has never been a talker, ever. He has never pointed, used gestures or anything. His hearing has always been perfect. Basically, what I am trying to say, Parker had a very low baseline to start with. It's not like the typical story you hear, "my son or daughter was singing and talking up a storm and then when they turned 2 it all stopped."
Parker never did those things so... I suppose it's a little easier on our hearts because we never had a child that we lost in those ways. I cannot imagine the pain and angst those parents must feel. My heart goes out to each and every one of them.
Some of his behaviors are rather odd. They are normal to us because we don't know it any different, but I am not blind to the stares that we get while we are out in public. Yes he has a shunt on top of his head. Yes he has several scars on his head. Now we have "stims" that people can't help but watch. He moves his fingers together. He moans and ticka tickas and eeee eeeees, all while jumping around on his tippy toes.
We LOVE his ticka tickas and EEEEEs! Those are happy Parker sounds. When I hear them on the baby monitor I can't wait to look over onto the screen and see those arms flapping away and legs swaying in the air with that huge grin on his face.
Unfortunately it seems like we are still wading through uncharted territory and most of our experiences are gut wrenching. The first time his autism really got to me was at my cousin's first birthday party. The party was in an open area, no music. There was a pretty good size group of people there for the festivities. My cousin had decorated the entire place and had balloons on each table. Parker freaked out. He was crying and my dad and stepmom had to take him outside to walk around because he could not handle it. They took him because I could not handle it. My poor cousin had to put all of the balloons in a closet, away from Parker so he could come back in. I was so embarrassed and ...confused. She was un-phased, God love her.
Why was this a trigger for him? Triggers. A new word to our Parker vocabulary. He has just a couple triggers, not many thank goodness. The kid is terrified of swings. He won't sit on them and he doesn't like it when we sit on them. Apparently a common problem for children on the spectrum. Another word for our vocabulary. Spectrum.
Honestly we are still in the flash card studying phase of understanding autism and it's definitions. We are not yet ready for the test!
Parker doesn't sleep at night. Parker doesn't use utensils to eat or take bites off of food. Parker doesn't color, paint, use scissors or string beads. Parker can't dress himself or take off his socks. Parker doesn't play with toys or "read" books like many kids his age do. Parker doesn't sign or gesture. Parker can't tell me that he's sick, cold or hungry. Parker doesn't talk.
I dream about the day where I could maybe hear what his voice would sound like. I dream about the day where he could tell me that he loves his momma.
It's not that he won't do these things...he just can't...yet. I have to remain optimistic that he will do some of those or all of those things. Who the heck knows, right? I know he wants to. I know he does. It frustrates him so much when we don't understand what he's trying to tell us. It's just wrapping your brain around the fact that he may not do those things. If only I had that crystal ball...I know he may not ever do some of those things. I have to accept that reality.
I constantly remind myself it could be so much worse and it sooo could be. There were moments when I wasn't sure that I would ever kiss his sweet face again. I have him in my arms every single day and I know parents who have lost their children would take "a Parker" and all of his issues over losing a piece of their heart. We are so blessed, so incredibly blessed to have him in our lives.
His smile melts my heart and his laugh is contagious. He loves to take my hands and place them on his face. He also rubs his face on my face and just laughs and laughs. Weird behavior yes, but it is totally his way of telling me that he loves me. I just know it! It's Parker and I love all of him, even the stuff I don't understand. He loves when his Daddy comes home from work and he gets a big ole bear hug, even if he doesn't hug back, we know he loves it. We will love him and give him the affection he needs and deserves. Have you ever seen him? He's adorable and how can you not kiss those cheeks! Gah!!!!
However, as all things in our lives I would be lying if I didn't say that jealousy plagues us. It rears it's ugly head at playgrounds, school drop offs and social media. It's so hard to not focus on the things he doesn't do when you are constantly reminded of the things he could be doing. It's heartbreaking. Parker is learning how to use playground equipment and it's so fun to watch him explore. He will, however, always prefer a pile of leaves, puddles, or rocks to a slide. It's just the reality of him.
Will he blow out his birthday candles this year? Will he open up presents at Christmas? Probably not. I know this, but that doesn't make it any easier. We give Parker the opportunity to do everything kids his age do. I would say 99% of the time he won't do it and it is like salt being poured into our existing wounds. As parents we weren't yet healed from his Hydrocephalus and then we got struck with this. It is safe to say I have been a woman on the edge of insanity quite a bit lately.
I wish people understood everything we have done and continue to do for Parker. We are trying so, so hard to make this life better for him. I acted like a complete psychopath in the principle's office already and he's in preschool. It was like I had three eye balls. Why doesn't this make sense to the general public? I don't understand. I have learned that it isn't that people don't care, it's just that they don't understand autism and Hydrocephalus and shunts, etc...and what we have/want to do on a daily basis. His condition is so much more complicated because he can't verbalize a single thing. It's dangerous and we have to be on top of everything all the time. He needs an advocate and as luck would have it he has a mom who is a nerd and never shows up without a power point presentation to support her arguments.
I am building up my arsenal of resources and with time I hope to dominate this world as much as I dominate the Hydro world. I've reconnected with a high school classmate who has been my sounding board and inspiration (she probably doesn't know that, but she inspires me every single day). Her advice is gospel to me! I've cried, cussed and been my worst person in messages to her. Best part, I don't even think she cares because she too has been down this unfortunate journey with her son.
I just can't believe that something like this had to happen to sweet Parker, again. I can't dwell on it, I know, but I am still grieving. Right now, typing this all out, I can barely breath because the reality of our situation continues to take my breath away. My biggest hurdle right now is finding resources in our small area to help the complex child he has turned out to be. I didn't think he was "that" complex. Surely they've seen kids like him before. WRONG. We've reached plateaus with almost every single therapist locally. It's exhausting. To think Parker lives in a world where we can't find anyone to understand or help him.
My husband and I try not to think about Parker's life when we aren't on this earth anymore. The idea of him being out there in this world without us scares me to death. I won't lie to you. It keeps me up at night. Who will take care of him? Who will buy him Doritos!? For the love of God what will he do if he doesn't have Doritos. It won't be pretty! I pray his sister has a big heart and will make sure her brother is loved, even if she can't be the primary, and I do not expect her to be, she can find a safe place for him. I just pray he has a safe place to lay his head every night. I can't even think about it right now because I will cry! Tears are forming right now. It is my biggest fear.
I don't know how to end this post. That must mean it's not ready for an ending. I have so much left to figure out and learn. We are at this time exhausted, but there is always light at the end of the tunnel. It's hard right now, because we just can't see that light. This tunnel is dark and the end is nowhere in sight. We will continue to fight for him and never ever give up. We will give him every single resource we can get our hands on to help him.
At the end of the day, Parker is so happy. He is such a happy child, without a care in the world. He knows he's safe and loved endlessly. Parker seems to have fun doing the simplest of things and we are very blessed for that. He enjoys jumping on his trampoline in front of the TV, playing in his sensory bin, watching the Little Mermaid 203038939203 times, and snuggling with us. He doesn't require material possessions, just love...and Doritos.
