Advice From the Mother of Two Autistic Boys: Learn to Forgive Yourself as a Parent and Human
Today was one for the books. I had an Autism specialist appointment for both of my children today. My youngest son was re-diagnosed with Autism and treatment started at this appointment. He is 11 years old, and I am feeling immense guilt over the amount of time it took to get him diagnosed correctly; it occurred to me that there may be many parents out there going through the same guilt that I am right now. It seems we are always being own harshest critics and our own worst enemies.
In addition to my youngest being re-diagnosed, my oldest (who’s situation I wrote about previously) had medications stopped that were affecting his heart negatively. So, to say I’m overstressed right now is a gross understatement. I’m not only overwhelmed, I’m irate at myself. Knowing as much as I do about Autism, how could I have let it take this long to get my youngest son on the right path? We all make mistakes though, right?
A Little Back Story
We always knew my oldest had something going on with him, since birth. He was born with a subderal hematoma on his brain which caused seizures and subsequently caused him to be put into a coma for a month upon his birth. We were in specialist’s offices from the start with him. It was easier to get him diagnosed because he was more severe, and his problems started from the beginning. With my youngest son, I knew something was off from about his first birthday, but the process seemed more daunting than it did with his brother. At the time my oldest (Zain) was just being diagnosed and I didn’t know a lot about Autism-in fact, nobody did. Plus, back then I did whatever the doctor told me without question. Never make that mistake.
When Dryden (my youngest) was 3 he was diagnosed with Autism. We treated him the same as we did his brother. I sat up a strict routine and schedule and started therapies for him. Everything was going great with his treatment for about 2 and a half years when our doctor suddenly retired. We had to search for a new doctor. In the area I lived, at the time, there were only a few places that would entertain the idea of seeing an Autistic child; and even then, it was on a case by case basis. The only one available in my area that would take us was not a specialist, and apparently knew less about Autism than I did. He spent 3 mins with my son and removed Autism from his medical records, citing him being either “recovered” or having exhibited “learned behavior from his brother” as the reason for this happening. From there it was a domino effect that seemed out of my control. Now I realize none of it was out of my control, I held all the cards- in the past I just didn’t realize that.
Within that same year his reevaluation for his IEP came up; because I no longer had the doctor backing me and knew so little about how the special education system worked at the time I allowed the school to remove him from special education classes and release his IEP. I took them all for their word. Never questioning the motives of the school or an inexperienced doctor. How naïve of me.
Fast Forward to Today
Here I am sitting with the specialist, hearing him tell me that Dryden most definitely has High Functioning Autism, ADHD, and probably OCD (I have OCD, so it wouldn’t surprise me.) I can honestly say that in that moment my whole world crumbled. I looked at my son and felt like I let him down. You’d think having gone through the diagnostic evaluation twice before I’d not have reacted that way; however, I feel like I let the ball drop. Early intervention is key, and I do have some comfort knowing that he did get that early intervention when he was younger. That still doesn’t change the last 5 years though.
He’s now gone 5 years without treatment for Autism and struggled every single day because of my decision. That’s 1,825 days that he has missed out on therapies that he needed and medications that could’ve helped him. That’s 43,800 hours of time I missed out working socially with my son in the way that he needed to be worked with.
I could beat myself up all day about this, but I must take a step back. I must take a moment to live in the now and absorb it all, not spend a lifetime blaming myself for 261 weeks of misguidance. I must alleviate the blame from myself and if you are in similar shoes to mine-you must let go of whatever is causing you to hold guilt in yourself to. As a very wise woman told me tonight, “Now I know what to do, it can only go up from here.”
You know what, she is right. Wallowing in my sorrow for my shortcomings as a mother won’t change anything. It’ll just drive me crazy. So, I must let it go and move forward. I can’t sit around and beat myself up, I am a mother-my job never ends. I must go from this point forward and be wiser in my decisions and be more forgiving of myself. That same wise woman asked me a question tonight that got me thinking. She asked me, “If I were in your position and was crying to you about how mad I was at myself, would you be saying these things you are saying to yourself to me?”
That one comment changed my whole mindset. The fact is, no I wouldn’t. I would be telling her that she did what she thought was right and that she is doing the same thing now. I’d be telling her that she’s only human and we all make mistakes. I’d be telling her to be more confident as a mother because she does a kick-butt job. I’d be telling her everything she said to me. Thank goodness for her support tonight.
I just want to leave fellow parents of special needs children with this- We are all human. We all make mistakes. No person is perfect. Sometimes things don’t work out as we expect and that is ok- roll with it. Remember that above all- you are an amazing person with amazing gifts to give this world, despite any decisions that you may be beating yourself up over. Bullying yourself won’t solve anything for you and it won’t solve anything for me either. We all must learn to be more forgiving of ourselves and of each other.