Idealistic Goals vs. Reality
I have always tried to give myself a goal each year, accompanied with a view of reality. I love my son beyond words and would give him anything and everything to help him become independent. The way I describe independent is much different than anyone's point of view, if you don't have a child with autism. Our journey has been a long one to get to the point where we are in life, so please don't judge me or my family. I have had a lot of cheerleaders helping me, Cole, and my husband when it comes to the idea of being completely independent. I won't lie; the first eight years of Cole's life were a struggle for me simply because he didn't speak or tell me what he needed or wanted. I felt, at times, like throwing my hands up and throwing in the towel. I wanted to roll up in a ball and cry many times (and sometimes I did), but my stubborn will to give Cole a voice and help him navigate in this big, bad, enormous world of uncertainty made me strive to be the best mom I could be. I had fights with people over what Cole needed. We changed pediatricians three times until we were all satisfied (beyond happy with our current doctor and staff). We also tried a developmental pediatrician too, for Cole, which was just not a good fit.
You have to find the right fit for your child and you, simply because you are going to become friends with this person. I liked Cole's first pediatrician, but after I started questioning his perspective in terms of a diagnosis of autism, I clearly became "that parent". I clearly remember Cole's pediatrician asking me to write down the words Cole said at age 2. I wrote down words that I thought I heard Cole say (actually mimic a sound), and his doctor took that as, "Oh he's fine. Boys usually are slower at doing things then girls, so he probably just fits into this category of a slower talker." I knew at age 2, Cole was not progressing the way I thought he should. I also knew that since Cole had had 12 ear infections in one year, this could be slowing up his progress to talk. I would hit my head against a wall just trying to figure out why my son didn't talk. Looking back, I thought I talked too much and this was the main reason that Cole couldn't get a word in edge-wise. Seriously, I thought in my head, "He was slow to walk--17 1/2 months, so maybe he's going to be a slow talker." As a mom, you know when something is not right with your kid-- it's that inner gut feeling. I knew Cole was different, but I also knew he needed help that I couldn't give him.
Fast forward ten and half years and my kid does not shut up! I fought long and hard for Cole, and I still do. You have to be your child's advocate. You must be their voice, simply because if they don't have a voice to advocate for themselves, you need to step up to the plate and be that parent who questions doctors, nurses, and therapists. I only have a bachelor's degree in music, so I didn't know much about medical issues. Make Google your best friend. Please know, we have great doctors now, but it's not because I settled on just one. Do the homework, find that right fit for your child, and also question their perspective when it comes to treating a child with autism. I had many battles with Cole's first pediatrician, simply because he didn't think Cole had autism. He blamed Cole for putting play-doh in his ear at age 8, that caused his ear infection. We didn't have any play-doh in our home, so I just it happened at school. Do NOT ASSUME all doctors want to treat or know how to treat a kid with autism. My last straw with this doctor was when he told me to treat Cole's staph infection with bleach. He could sit in a tub of bleach to get rid of it, or it would go away at puberty. Cole was 8 YEARS OLD! There was no way that I was going to put Cole in a tub of bleach to get rid of his staph infection. I knew then I was looking for a new pediatrician for Cole and for me.
Cole has always said when we go to the doctors "No shots and no needles." I questioned my sanity at times, because he was (and still is) a broken record. Cole is terrified of needles and shots, but he gets that from me! Yes, totally embarrassing moment, but when I was 14 years old, I had to get a gamaglobulin shot because I was exposed to hepatitis. I cried all the way to the doctor's office, ran away, stole my mom's car keys from her and drove to my grandparent's house because I was terrified of needles. Once they found out that I was terrified of needles and shots (yes they had to pry my hands off the door to get me in the door), they tried to coax me and put me at ease. I HATE needles. I always have, but as an adult, I realize the need for shots and needles. Explain to me at 14 years old that I have to get a shot, simply because of some girl that has hepatitis. I could ride the tallest roller coaster at Walt Disney World, but tell me I have to get a shot, I would cry like a baby. Sometimes, I think Cole acts the way he does is not because of his autism-- it's because of me! Those characteristics and traits that I had as a child and now an adult is similar to Cole. We literally could be the same person at times. He loves to sing, I love to sing. He loves to eat. I love to eat! Again, you know your child better than anyone.
I am one of those parents that questions a lot, in terms of life. I was always inquisitive in school. I asked too many questions in school (I even got called into one of my SMU music history teacher's office and was scolded, because I was supposed to let others ask questions in the class!), but I have always believed that the more we question ourselves and the world we live in, we become deeper and more meaningful people. I strive every day to help Cole with his independence. We have two chore charts for Cole and these help tremendously! I have to remind Cole to look at his chore charts, but once that pattern is established, he gets it. He knows to take his dishes to the sink. That is huge for me and for him. He knows how to get dressed, where to put his dirty clothes, how to brush his teeth, brush his hair, take his medicine, and take a shower because of these chore charts. My kid may not be comfortable staying home alone, even if it means I am outside talking to a neighbor, but you can believe I am doing my best to help Cole achieve total independence. I pray each and every day that he finds his way towards total independence, because ultimately, this will complete me as his mom. Nobody can explain how to "cut those strings" when it comes to being totally independent from your child, but as Cole's mom, I think I am doing a great job! I don't want to send Cole out into this world wondering, "How do I do this? My mom can do it for me." I realize that I am 40 years old and I am not getting any younger. Cole needs to be independent, not just for his sake, but for my well-being too. I was given the wings to fly and to become independent as a teenager, but as young adult, I found myself yearning to stay at home. I was comfortable living with my parents, simply because I knew they would always be there for me and Cole. This was an easy way out to say "You don't need to be independent because I can help you." I always yearned for my own place, with Cole. That never happened. I feel more independent now that I am married, simply because my wonderful husband gives me what I need. He is a terrific father, but most of all, the most amazing man I could have ever married. He gave me my independence, as well as Cole's. I love this man and would marry him a thousand times over, simply because he is that wonderful. Now don't get me wrong, I love my parents, but I needed to have that independence, even if it was just for a year. I am blessed to have great parents, so please don't take this as a dig to them. I don't know what I would have done without their support. However, make sure before you decide to get married, have children, and live "happily ever after", you know who you are as a person. It has taken me 40 years to figure out who I am and what I have become. I love teaching, I love music, I love to dance, but most of all, I love my husband and son.
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