Learning to Accept We Won My Son’s Battle with Autism

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When your child is diagnosed on the autism spectrum, you instantly enter the greatest battle of your life—the battle for your child’s future. I’ve been fighting that battle for almost 11 years with no one in the trenches with me but my son, Michael. I can’t describe the pressure I’ve felt trying to do everything in my power to ensure the very best for him. It’s been a long road filled with frustrations and triumphs, setbacks and breakthroughs, tears and laughter. Michael turned 14 this month, and as I reflect on how far he’s come on his journey, I’m filled with so much pride. Why then am I still so scared? Why am I still on guard every minute? The answer is that Michael’s life and future are changing. Everything we’ve fought for is coming to fruition; everything we fought for is being realized, and while he’s reveling in the change, I’m the one struggling with it. I’ve spent so long fighting for my son that even when I’ve won the battle I don’t know how to stop fighting.

From the day Michael was diagnosed, I went into action. No diagnosis was going to hold him back. No one was ever going to tell him what he can and cannot do. I scheduled him for two speech therapy sessions, one occupational therapy session, and one physical therapy session a week. Insurance covered a minimal number of sessions, but even when I had to pay for the sessions myself, I continued for three years until the therapists released him due to his progress.

I immediately had Michael evaluated by the county educational services and enrolled him in a preschool for children with special needs. In addition to the weekly therapy sessions, I would work with Michael each day reinforcing what he was learning in preschool and in his private therapy sessions. Within three months of starting preschool, I was informed that Michael would need to go to another school the next year because he had progressed so much in the short time he was there that he was too advanced compared to his classmates; he wasn’t getting enough stimulation. I moved him to the preschool in our hometown, and he continued to progress.

Year after year, IEP meeting after IEP meeting, and teacher conference after teacher conference, I went armed and ready to fight. Michael would get the services he needed to succeed. He would get the individual attention he needed to ensure he understood the classroom material. All this while spending hours each day helping with homework, breaking down assignments into manageable chunks for him to tackle, and teaching him how to study based on his strength of memorizing information. It was grueling at times, some nights ending with both of us in tears, but it was also rewarding when he would come home with an A on an assignment or test that he had worked so hard to earn. It was our life; it was what we were used to it, or at least it was what I was used to.

Fast forward to seventh grade. The year certainly hadn’t started the way I imagined. It was a rough start with math class posing an ongoing struggle, but as the year went on, something changed. Maybe it was puberty, or maybe it was just all of the hard work we had done over the years, but Michael started owning his schoolwork. When asked to be taken out of class to work with the intervention specialists, he declined. He didn’t want to work with them other than in study hall. He didn’t want to leave class; he wanted to stay with all his classmates. He also didn’t want his helicopter mom checking all of his work or helping him with his assignments. At first, I thought it was just Michael being lazy, and I was angry and pushed back, which frustrated Michael. He knew what he needed, and he wanted me to trust him when he said his work was done, trust him when he said his assignment was ready to be handed in, and trust him when he said he was ready for his test. The truth is that I wanted to, but I didn’t know how because I was supposed to be the one fighting for him, but now, he was fighting for himself.

The biggest shock was at his IEP meeting at the end of the year when his teachers indicated Michael would be due for reevaluation at the end of his eighth grade year. They didn’t think Michael would need an IEP for high school and that he most likely could move to a 504 plan, if he needed any type of plan at all. I freaked out when I heard this. Under no circumstances would the school take services away from Michael. I went on the defensive and prepared for a fight. The intervention specialist pointed out that Michael wasn’t truly receiving any special services. In addition to not being pulled from classes at Michael’s request, we had never used any of the accommodations we could have. Michael could request extra time when taking tests, but he never did. Michael could have requested extra time for assignments, but he never did. All of the accommodations Michael could have asked for, he never did, and he didn’t because we had spent so much time working on making him understand how he needed to work. We spent so much time making him understand how to play to his strengths and how to compensate for his weaknesses. In the end, it resulted in Michael performing at grade level side by side with his “typical” peers.

Even his psychiatrist saw the change and suggested there was no need to continue his regular sessions with her. Again, I protested. He starts high school next year. Big changes are coming. She can’t just abandon us on the cusp of this huge life event. What I failed to see in her recommendation was the same thing I failed to see in the recommendation from the IEP committee. No one was trying to take anything from Michael. They just realized that Michael had achieved what I dreamed for him for the past 11 years. He’s being a typical kid his age without help from anyone else.

We are now halfway through eighth grade, and Michael is doing it all himself. He completes his homework and assignments without my help. He asks for help studying only when he feels he’s struggling with the material. He’s completely independent, and his grades are just as good as when I was intervening and hovering. He’s become more social and even went out by himself in the neighborhood for Halloween. He still has all of the quirks that make him who he is, but he also has a maturity forming—a maturity that makes him need me less, and I don’t know how to deal with that.

It took a lot of self-reflection for me to realize that the reason I’m so apprehensive about changes to the way our lives have been (no IEP, no therapy sessions, no marathon homework sessions) is that I don’t know what my role is in this life we are moving forward with. It’s been my job to protect Michael from the cruelty of the world that wouldn’t understand him and his quirks. It’s been my job to fight for him and to prove to the world that he’s more than his diagnosis. It’s been my job to make Michael believe he can do anything. After 11 years, I’ve won those battles; I have this amazingly brilliant, loving young man who has this amazing high school experience in front of him and dreams of life as an animator—a life that has him looking at art schools and technical schools to figure out what option provides the best experience for him.

So where does the fighter fit in now? How do I stand down after so many years of always being on guard? In all honesty, I don’t have an answer to these questions. I know I’m very lucky and that Michael’s experience is one that many parents dream for their children. My experience is one that many parents dream of for themselves. Michael will always be autistic. It will always be a part of him. Because of that, I’ll always be an autism mom, but now, I have to learn how to just be a mom. That may sound weird to most parents, but it’s been hard for me to let go, to step back, and to let Michael take these steps alone. Fighting for him is second nature; it’s instinctive. For the first time since his diagnosis, I have to learn how to fight those instincts.

I fought the fight life presented us. I went into battle for my son, and I won. Now, I have to learn how to trust that victory. I have to learn how to live in the life that comes after the fight, and no one prepares you for that. Don’t get me wrong. It moves me to tears to watch Michael be the man I always wanted him to be. It fills me with so much pride. I think I’m afraid because while Michael starts his new journey I have to figure out my own. I haven’t thought much about what life holds for me outside of being an autism mom. I guess it’s time to find out.

How I Made 2018 an Amazing Year

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I knew going into 2018 that I wanted to make some pretty big changes in my life. Don’t get me wrong; I had an amazing life—one I was very proud of. However, there were parts of my life that weren’t allowing me to be my best me and that weren’t contributing to my happiness. I’d spent so many years and so much time being what everyone else wanted and needed me to be, but I wasn’t being what I wanted to be or what I needed to be for myself. This was the year when I was going to change all of that. This was the year that I was going to prioritize me. It was going to be a year of peace, health, and happiness. This was the year I was going to start living the life I’ve always wanted to live.

I Learned to Practice Self-care

This was the first change I made because I knew it was the most important. I’ve never made myself a priority. I’ve spent my life selflessly giving to everyone around me. The key was to learn balance. It was good to take care of others, and doing so makes me happy. However, the reality I have come to embrace is that I have to take care of myself first. It started with something as simple as getting facials every month. This then grew to taking time daily to go for walks. From there, it’s been just ensuring my needs are met first. It’s about taking care of myself and replenishing myself so I can be my best, which allows me to be the nurturer I love being. I still have a long way to go with this, but I’m proud of the progress I’ve made.

I Went Vegan

I was a vegetarian in 2009 but eventually stopped due to a lack of a support system. I continued to eat predominately vegetarian cuisine, but when I did, it was always met with comments like, “Oh, are you a vegetarian?” or “Wow, you eat really healthy, huh?,” all with a condescending tone like I’d just sprouted a second head. It was easier to just eat like the people around me to avoid judgement. Well, I decided this year that I didn’t care what anyone else thought. This was the lifestyle I wanted to live, and I was going to do it. The positive results of the decision were almost immediate. I feel better than I have in years, and the health issues I started having in 2017 have disappeared. Of all the changes I made this year, this one is the one I’m happiest about making, and I look forward to sharing more about this with my readers as I continue on my vegan journey.

I Changed Jobs

I’d been contemplating this change for a while.  The problem was that my job was breaking me down more and more each day. My favorite part of my team’s job was shifted to another department, and there were numerous changes taking place. The environment I was spending most of my day in and the people I was spending most of my day with were changing drastically. All of a sudden, an environment that had been creative and fun was now filled with negative energy. It was hard because I was a manager, and I had a team that was depending on me. I felt obligated to tough things out for them, but at the end of the day, I was left with nothing to give myself or my son. When I was presented with the opportunity to change roles, I realized it was the change I needed, and that I had to do what was best for my family. My team was very supportive of my decision. Instantly, I felt like the weight of the world had been lifted off my shoulders. I now get to be creative again, designing tutorials our customers will engage with daily. I also work from home, so in addition to being able to now completely control my work environment, I am home when my son gets home from school—a change we both appreciate. It’s been about three month since the change, and honestly, I wish I’d done it sooner.

I Started Attending Events I Love

I rarely get to do the types of things I want to do. I’ve always loved the fine and performing arts but rarely attended events because the people in my life didn’t share my passion. Similarly, I rarely get to see the movies I want to see because my tastes in movies aren’t shared with friends or family. This year, I decided I didn’t care about having anyone interested in attending events with me. If I wanted to do something, I did it. The result has been trips to the opera and ballet and other events that seem interesting to me, and I’ve had the best time. These are experiences I otherwise wouldn’t have had because no one wanted to share them. The funny thing is that as I tell people about this, they admire that I do this. People would respond with, “I’ve never seen an opera. That sounds so interesting” or “I didn’t realize there were those types of events in the area.” After the events, I started having people follow up with me and ask me about future events.  This is definitely something I plan to continue. In January of 2019, I already have tickets to see a play, a ballet, and a concert. That’s not a bad way to kick off the new year.

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Why I’m Grateful for Me

November is the month of thankfulness. We take the time to reflect on all of the things we are grateful for, so we’ll see the posts about people being grateful for their children, their spouses, their pets, etc. These are all important things that deserve recognition for the parts they play in our lives, but the one thing that is always overlooked when we stop to think about the things we are thankful for is why we are grateful for ourselves. We don’t ever stop to reflect on ourselves and why we are proud and thankful for who we are and what we’ve accomplished. Maybe people think it’s selfish to do that, but I decided that my first post in November would be about the things about myself I am most grateful for.

I’m a giver. It’s a characteristic I get from my dad. I always want to take care of people. Seeing people hurting or in need breaks my heart. I want people to be happy, so I do what I can to make that happen. I think this is why people always turn to me when they are in need. Whether it be family or friends, they know I’ll never turn them away in a time of need, and I never expect anything in return.

This kindness extends to strangers as well. I’ll compliment strangers on a shirt they are wearing or on their manicure when I like it. I always smile at the cashiers checking me out, exchange pleasantries when they attempts to chat with me, and wish them a good day. I’m always polite to servers and tip well because I know how hard it is to work in the service industry. I’ve even exchanged buggies at the store with a woman who had a baby in a carrier because she was struggling to work it due to a bad wheel. It may seem minute to some people, but all of these small things are moments of kindness these people can take with them through their day. Knowing I may have brightened someone’s day warms my heart, and I’m grateful for that heart.

Life has a way of throwing challenge after challenge my way, and people are always saying how strong I am and how they don’t know how I overcome and do what I do. I don’t know how not to do it—how not to overcome everything placed in my way. I refuse to let anything get the best of me. No matter what comes my way, I persevere because it’s just a part of my nature. Put a wall in front of me, and I’ll offer you seven different ways I’m going to get over or around that wall.

I’m most proud of being a single mom, and this is where my resilience has served me best. I’m raising my son 100% on my own. I’m responsible for providing for his every need. Add to that the fact that my son is on the autism spectrum, and it creates another obstacle in addition to being a single parent. I don’t sit around and cry about how unfair it is that my son’s father chose not to be a part of his life or how unfair it is that my son is on the spectrum. I don’t have time for “whoa is me” because I have a son to raise. I just do what I need to do for my son. I’be worked my ass off to provide the very best of everything he needs, and I’ve fought for a decade to ensure he’s afforded all the rights his “typical” classmates receive. I’m proud of life I’m providing for my son and the amazing young man he’s become as a result of how I’m raising him. There’s no other option daily than to show up and do what I need to for my son. It’s my resilience at its best, and I’m grateful for that resilience.

While I’m caring and have a huge heart as I described earlier, I also know how to dig in and hold my ground. This surprises people who first interact with me because I’m this petite woman standing just over 5 feet tall. I’m a strong, smart woman, and if you’re wrong, I’m going to let you know. If you try to steamroller me, you’re in for one hell of a surprise. The point is that I’m a force, and I’m damn proud of that.

I’m a woman working in a predominantly male field. I’ve had to work twice as hard for everything professionally, and as a result, I protect what I’ve built with passion. I was one of the first female managers at my company, and I’ve had woman at the company tell me they admire what I’ve built; they admire my strength to go up against the men and hold my own. Hopefully, I’ve paved the way for other women to do the same. I’ve had people tell me that there are men at the company who are afraid of me, and I’m not going to lie, that makes me feel good. Don’t get me wrong, I’m not running around all day yelling and screaming at people. I’m just firm and direct. Some people can’t handle strong women, but I never water myself down or consider changing who I am because I’m proud of the woman I am—period. I’m feisty, and I am grateful for that fire.

These are the parts of me I’m most grateful for. What about you? Everyone should have at least one thing about themselves they’re grateful for. My challenge to all of you is that as you go through the month and start thinking about the things you’re grateful for that you include at least one thing about yourself on that list—just one. If you have more, even better. I get that self reflection is hard; people don’t like to analyze themselves too much, but everyone should be proud of the parts of themselves that are uniquely them. So, take some time, reflect, and make that list. You’ll be glad you did.