The Early Years
I am writing this blog for many reasons. I admire so many people who live with autism every day. My inspiration for living is my son, Cole, and my husband. I want to make a difference in people's lives, so when I die, people can look back and say, "She did a good job. I am a better person because I knew Erika Warren". I don't know if I have caused problems by airing out my grievances on my blog about my son's education at his school this year, but I will be the first one to say that change can be good, even when it's combative. I will be the first to say that change was good for me when I changed churches, got divorced, and found the most amazing husband who supports me and Cole. He loves us unconditionally. Change was not easy for me or Cole, but we have adapted to what life holds for both of us. I know without change, our lives would be so different (and probably not nearly as exciting or good!). However, for many people who have autism, change is something that is not easy. This post will examine change, how to deal with unexpected change, and how to move on in a positive way so that it doesn't consume you.
I have been incredibly blessed by so many people and relationships, that I really can't count on both hands how many people I have loved and lost. Death = change = which is not something that I like to talk about. However, sometimes we need to let people go when they can't get any better. My aunt Cleo died when I was 16 years old. Her death came at a terrible time in my life (or so I thought). I was sixteen years old, my mom had just finished chemotherapy and radiation from her two year battle of breast cancer, so we thought Cleo would be fine. She wasn't. Cleo was diagnosed in May 1990 and she died on August 9, 1990. She was given six months to live, but she only lasted six weeks after her cancer diagnosis. The reason I am talking about Cleo and her death is that it really affected me spiritually and emotionally. The irony of her death was that my mom and I were in Oaxtepec, Mexico and Mexico City when Cleo died. We were attending ICYC-- International Christian Youth Conference-- when we received the call. Do we turn back and go home to Dallas or do we stay here to listen to God's word? This conference was a big part of my life that helped me realize that God is always with us. My faith has gotten me through life on so many occasions, but I needed this conference to wake me up and realize that Cleo was gone. She was never coming back. I loved Cleo like a mom and her daughter, Kim, and I have always had that sister connection. Cleo would have been 80 years old yesterday. She was 56 years old when she lost her battle with cancer. I know Kim misses her every day, but Cleo's spirit lives on in her. I don't see Kim often (maybe once or twice a year now), but she is my sister. I regretted not coming back for Cleo's funeral, but my mom said the best decision we made was to stay in Mexico. I agree now with my mom, but at the time, I just wanted to go back and say goodbye to Cleo. I know now, she is always watching me and is loving me from Heaven, along with my Nanny and Granddaddy.
Change was difficult for me when Cole was diagnosed with autism. What had I done to fail him as a parent and mom? How could I have not known Cole had autism? Autism was not something that was so visible 10 years ago-- even five years ago. I had witnessed Alzheimer's, cancer, and heart issues in my family. I blamed myself for not listening to my inner voice. Did I cause Cole's autism? Had I let my son watch too much television and Sesame Street? I realize now it was not my fault. Autism is NOBODY'S fault. Cole has autism. Change has not been easy for him this year, simply because there was too much of it. I know as a parent, sometimes life can get overwhelming. I am so tired at times that I feel like falling into bed and taking a 12 hour nap. I now realize that if I want to remain healthy, I have to take time for me and rest. Without rest, I am no good to anyone. My son is getting pretty independent, but sometimes Cole doesn't want to take a shower. This battle has always been there. According to Cole "No showers and no baths. I HATE showers and I HATE baths". When Cole was four years old, he would fight me and my mom to take a bath. The first time this happened we were in Florida and I just assumed he had seen something at the beach (like maybe a shark?) and got scared. I didn't realize this battle would last for nearly two years. My mom and I physically had to pick up Cole and put him in the tub, because he was so scared. Once he was in the bathtub, Cole was fine. Jump forward 8 years later and Cole is much better, but he still hates to take a shower (he is too big now to fit in a bathtub!). This is one battle I do not like, simply because Cole needs to look and smell good! I don't know if it's just a boy thing, or if it's an autism issue, since I have friends that tell me their sons don't like to take showers who don't have autism. I guess once Cole realizes girls don't like him because he stinks, he will get over this. The reason I am sharing with you these intimate details is because you are not alone. Kids can be difficult, but what do you do with a kid who is 5'8", nearly 200 pounds, and doesn't like to get clean? My husband I turn it into a game, tell him that the tickle monster is going to get him, and give him something to look forward to when he gets clean and finishes his shower!
As I digress, I always wonder what I can do next to help my son in school and at home. Cole has SO MANY friends and I am constantly amazed by how much they love Cole. Last week, we went to our school picnic and all of Cole's friends were there. He loves his friends and the feeling is mutual. What amazes me is how they help Cole in every aspect of life! My husband and I are worried that Cole's weight will get out of hand, simply because he doesn't like to exercise. Treyson, one of Cole's very best friends from the Jambox Boys, is one of the sweetest kids I have ever met. Treyson comes from a very loving family and his attitude towards Cole is nothing but unconditional love. He took Cole out to the field, ran with him after the kickball game, and came back and told me "Mrs. Erika, Cole can run fast! He is my best friend and I am so proud of him!". Now don't get me wrong, Treyson's very best friend is Matteo. Matteo and Treyson are like brothers from another mother and I am blessed to know both of these boys! Matteo's mom and Treyson's mom, who are some of my very best friends, are beyond sweet. Without these parents and their involvement, Cole's life would be so much different. My life would be so much different without my friends. I have learned how to accept help from friends, and without them, I know I would be a lot more tired!
I have been told to help Cole with change. My husband and I are constantly coming up with ideas on how to help Cole adjust to change. We know he is in for a lot of change next year when he enters junior high school, but I am vigilant about making sure Cole's I.E.P. is top-notch. NOTHING slips by me when Cole's I.E.P. is involved. The I.E.P. is an Individualized Education Plan that is supposed to be followed by his school, the teachers, and administration. Cole's I.E.P. is something that I have worked on every year for him, simply because I want to set him up for success! Change is good, when it involves helping Cole achieve his educational needs. I feel Cole has been cheated this year, simply because we weren't given a paper copy of his current I.E.P. until a month ago. We were supposed to have Cole's current I.E.P. last October. Yes, you heard me right, last October was when we were supposed to have Cole's current I.E.P. We are still waiting for Cole's Speech Evaluation report (yes, that was supposed to be given to us last October too), but I plan on leaving this phase of our life behind me and move on. I pray Cole's new school will adjust to what he needs and follow his I.E.P. I am impressed by Cole's junior high school, simply because they have answered my emails and responded in a way that doesn't feel fake or phony. I am praying and hoping next year's journey into middle school will be a positive experience and change for Cole (and for me).
I will end this post today by saying how grateful I am for positive change in Cole's life. Without change, life would be boring. However, if change is not good, it is very difficult for a child who has autism to adapt without having meltdowns. Cole struggled at school the first six weeks, so I paid the price at home. I have been told Cole is a happy and well-rounded boy. Nobody knows what goes on behind closed doors. My son needs to be challenged at school and his I.E.P. needed to be followed. Peace out and many blessings to you all!
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