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Reflection: My son isn’t a Hero, He’s a Person

April means Autism Awareness and Acceptance month and I felt compelled to write about a realization I recently had about my oldest son, D who has autism. My realization was that he’s not a hero, he’s a person. I want to say that first and foremost, I got permission from him to write this post about him because at some point in the journey, it became his story to tell. I also got his permission because I’m trying to be better about boundaries when it comes to writing about the people in my life. I could actually write more about boundaries but that’s another blog post.

My oldest son was diagnosed at the age of 5 and I was 22. I’ve written about him in a previous post about how he was my hero because of all of the obstacles he’s conquered and how proud I am of him because of that. Here’s that blogpost:

My Amazing Hero

One thing that I didn’t address in that post was how receiving this diagnosis meant me receiving a new identity, a mom with a child on the autism spectrum. Or we are often called autism warrior moms or whatever is trendy at the time. From the age of 22, this identity was deeply ingrained within me. I’ve lost count of how many articles or books I’ve read about autism. I’ve lost count of how many parent teacher conferences or IEP meetings I’ve attended having to fight or advocate for services for my son. I’ve lost count of how many therapists or counselors my son has had. You get my point. Being a mom to a child with autism is not easy. It’s hard, really hard. I’ve mentioned before how my child started to flourish between 3rd and 4th grade and he went on to be successful in his academic career throughout high school. Throughout all of this, I didn’t realize it but I put my child on a pedestal. I don’t know if it was the BPD or me being super excited about my son’s progress. Don’t get me wrong, it was a good and healthy thing to encourage my son and support him; but at some point idealizing him put an unhealthy amount of pressure that started to feel like a burden. I won’t say what happened next in this story but I will say that he’s now thriving as a regular 23 year old. I realized this week that at some point I stopped being an autism warrior mom. I think that I understood this sometime in 2016 after my son turned 18 but really accepted it this week. It’s weird when I used to start talking about myself, being a autism warrior mom would be one of the first things I would share and now I don’t feel the need to. When someone who knows me and my son mentions he’s quiet, I’m just like “well he’s just shy”. Like I first mentioned in this post; it’s just no longer my story to share. When I talk about my son, I just say “ he’s D, pretty awesome most of the time but kind of annoying at times.” I’ve also let go of this idealization of him I had. I still admire him and love him for who he is but he’s not a hero; he’s a person.
He’s a person with his own set of issues and insecurities. He’s a person with goals and plans for the future. And talking to him, he wants to be seen that way. I also want to mention that I’m not speaking for all the moms with children with autism, I’m speaking just for myself. Getting here has been difficult but it’s been an important part of the process of me becoming not just a better mother, but a better person as well.

me and my oldest son sometime in March
Posted on by pattytacuri

The Struggle Continues…

It’s been a long 4 years since I last blogged and two themes seem to follow: my dissatisfaction with life and the progress with my oldest son D, on the autism spectrum.

 

The Good: My boys- My oldest son D, graduated from high school in May with a 4.0 GPA and is starting the university next month. Also, he graduated with over 30 college credits and many honors and awards. He literally is my light at the end of the tunnel some days when everything seems so overwhelming and bleak.  My middle child T, is the opposite of D, meaning he’s extremely social but does not do as well academically. He is definitely the most sensitive child out of my three sons and that presents challenges. My little one M, is now 6 and is as happy and energetic as ever. I always say he’s a good combination of my oldest and middle sons.  He does well academically and is a social butterfly. I feel like aside from the usual childhood angst, nothing really gets him down. I envy him.IMG_20170520_224723_508

 

Other things- I joined a local Toastmasters Club and have grown more confident in my public speaking skills. I’m also on the board of a storytelling organization that empowers our local community by telling one story at a time. I’m actually proud that it was telling my own immigration story in October that prompted the board to invite me to be on it.

 

The Bad: I have severe anxiety and depression. Some of it is circumstantial. Some of it is just me and my awful brain. I took a job working from home with Child Support Services in October of last year and my mental health went downhill. Dealing with angry clients every day on the phone while also dealing with not the most positive work environment. Most people would argue that this would be an ideal work environment but for me it was just the opposite. For one thing, it’s fucking isolating, especially when the only human contact are your colleagues/supervisors via Skype and the angry clients on the phone (because about 75% of the people on the phone are ANGRY and rightfully so). The other thing is fucking technology not working right and being  monitored on a continual basis. Both of these things just added to an awful and stressful situation. And of course, there is my husband who doesn’t have the motivation to find a job and therefore is home every day. I resented him more with each passing day. While I’m being verbally abused every fucking day, he has the audacity to tell me to get over it. And to top it all off, my “perfect” oldest son started skipping school because of his own anxiety and I couldn’t help him. It was a recipe for me feeling like a worthless piece a shit to everyone so eventually I decided to do something drastic (that’s another blog post). Eventually, I did quit that job and landed another job in February of this year (not high paying at all) for the school district. It’s a job working with high school students with special needs. It’s actually quite an amazing and rewarding job in many ways but not one that pays the bills.

So this awful summer, I have been out there again, looking for jobs and while I have gotten a few interviews, none of them have panned out. It’s frustrating and almost hopeless. I told my husband, “We are just going to end up at my parents’ house soon” because this is how I truly feel. He responds that we’re not but how can I possibly trust him when he does NOTHING to re-mediate the situation. I told him I’m probably going to end up in an institution or dead to which he said nothing at all. Maybe that’s the only response he can come up with.  I stay in this relationship mostly for my children’s sake.  I keep thinking there is a light at the end of the long tunnel that is depression but I can’t seem to find it yet. 

Posted on by pattytacuri

My Amazing Hero

I think that finding that bright spark in my life has been very hard for me to grasp lately. This week my oldest son D was accepted into a highly competitive academic program in the  high school he will attend in the fall. I am a very proud mama and I have a good reason to be.

D was diagnosed with high functioning Autism at the age of 5 and at the time, he was basically almost non -verbal, extremely behind on academics, and showed no interest in socializing with his peers. As soon as we found out his DX, the school placed him in a special education self contained classroom with a multitude of therapists and teachers to help him. All expectations and hopes I had for him before the DX were dashed away and I honestly just wanted one thing for him : for him to be happy. scan0022 (2)    I did mourn for a while for “the child” that I had lost and this did blind me for a while. He was now a child whose future was quite uncertain, a child who most likely would rely on me for the rest of my life, and a child who would not graduate from high and certainly not go on to college. It was an inner conflict within myself and I felt shitty enough not being the best mother to him considering I had him at the age of 17. I was overwhelmed and felt guilty for being so ignorant and young at the time all of this was happening that I also blamed myself for his DX for a long time.  I had already felt like my poor child had so many obstacles stacked against him when he was born into a family with no father and an immature single teen mom, now this, Autism. Sigh.

So how did I tackle this: I educated myself.I read a ton of books- a year before his DX and continued to read the books and articles after. I had to learn to advocate for him and keep in constant contact with his therapists and teachers. I was that mom and continue to be that mom that teachers dread with my emails about what might seem minor questions and issues. The most important thing I did was: I had to learn to believe in him and his potential. I had to believe that my little boy would one day learn how read, do simple math, verbally tell me he had to use the bathroom (instead of grunting and stomping his feet), and just really talk to me instead of giving me two word responses and phrases. At the beginning of the journey, I told myself, that if he could just do those simple things, we would be okay and if he didn’t , then I would have to accept it and love him no matter what.
So with the support and help of family, therapists, and teachers, D just really blossomed throughout the years. The first 3 years were tough. I felt like we would finally reach him and we would finally get him to a point that he was functioning well,then something would happen and he would regress. Excuse the cliche but it was truly, one small step forward, and two huge steps backward. To say that it was frustrating would be an understatement. To be honest, I wanted to give up sometimes but I didn’t.     wpid-PicsArt_1362107779516.jpg

I always remember the day that I knew I could have expectations of him having a semi-normal life and it took his special education teacher to show me. It was during an IEP meeting for third grade and it hadn’t been a particularly good year for him but she turned to me and said, “You know, one day in the near future, it will just all click for him” . And sure enough, the following year, he really blossomed. It was all about these incredibly miniscule steps that built up over time.Eventually he went from his special education classroom in Kindergarten to a co taught classroom in fourth grade to advance/regular classes in Seventh grade. He went from several therapists and resource personnel to just a case manager on a monthly consult basis. His IEP went from 30 pages long focused on basic communication/academics to just a 3 pages long that focus mainly on socialization and independence.

Getting to this point with him hasn’t been easy but it has been well worth it. IMG_0624