This post was originally intended for my personal facebook page, but as it got to be too long, I decided to post it here and share it with the hopes others may not feel so alone in their own journeys.

Warning, this is long, maybe a slight diatribe, but if it encourages one parent who has been on the fence about getting help for their kid, then I’m glad I wrote it.

Today has been one of those days that has been hard for me to put into words and taken a lot to process. Those very close to me and Ian know of our struggles for years with some of his thoughts, behaviors, and actions. When you live with someone day in and day out who struggles with mental health, you look at the world differently, as well as yourself. The outside world sees you as a parent who can’t control your child more often than not, and you may find yourself constantly begging forgiveness. I know I frequently have gone to bed sobbing at night because I felt like I couldn’t be a good parent because I didn’t know what I was doing – I couldn’t explain why he would say things or do things and I couldn’t stop them. He’s highly intelligent, a straight A student, and an achiever in Scouts and sports, but he’s also frequently rambunctious, has no filter on his mouth, and never displays sadness. I used to call him Hurricane Ian long before that one ever came ashore because his moods could go just like a storm: calm, angry, destructive, then passed out.

Our journey down this road began when Ian was nine months old. A daycare worker told me he was developmentally delayed. I didn’t really understand little people, I had only ever raised puppies and kittens. I knew some things felt wrong, but just attributed to that I was doing something wrong. I grew up in a strict Catholic family where children could be seen but shouldn’t be heard, and outward affection wasn’t something often given. I was trying very hard to do the opposite, to darn near smother my kid in love in every way possible, even when it felt overwhelming. I was exhausted, particularly when he wouldn’t sleep at night. I would wear long sleeves to cover my arms to hide his bite marks, or the bruises on my arms and legs from him punching me as a toddler. By 18 months, after being denied everything else by insurance, he finally got accepted into our state’s Babies Can’t Wait program, and that made such a difference.

Ian didn’t know how to communicate. I could figure some things out, but not all of it, and it would just make him more frustrated. He was most content outdoors, with wide open space to run and explore (and eventually get potty trained because trees were easier to use than toilets for some reason). Through his three times a week sessions, it was uncovered that he struggled with fine motor skills like holding a spoon for feeding, had sensory issues to tastes, temperatures, and textures (he screamed through every bath until close to age 4), and couldn’t talk well enough to be understood until almost pre-k. But these specialists gave so much help and direction, and eventually helped him to transition to the school system which took over services for the next seven years in elementary school.

I have always joked about how blessed I was to have a kid who preferred vacations at state parks to theme parks, but it’s the truth. Ian has never once asked to go to Disney, but we have slept on a battleship in SC and did a spring break trek to another in Alabama. He wants to see every one that he can. He’s obsessed with WWII naval history, and wants to serve in the navy when he’s older. He thinks he will never have enough nutcrackers and Legos, and I would disagree after having to pack all of those up when we moved into our house last year. He lobbied to keep our Christmas tree up all year round, and I gave in for just our first official year in the new house (he is already trying to open up negotiations for a second year run).

A straight A student who reads pretty much every night before bed, Ian can hold amazing conversations with adults, but struggles so much with his peers who may not share his interests. His emotional range is minimal, never understanding why I may cry over something that makes me sad but still willing to accept that I just do. His sense of humor can also be described as dark or warped, and he doesn’t always know when he’s crossed lines on sarcasm. He’s often described to me as “socially awkward.”

Just over a year ago, we began seeing a play therapist together to try and get a handle on some things he was going through, personally and at school. I had multiple trips having to leave work early to pick him up for one instance or another, and found that I was developing anxiety every morning that he left for school wondering if I’d have another call that day and when. I had reached a point that I thought a military reform school may be my only option – I was being made to feel increasingly unfit because while I could control most of the situations when I was with him, I couldn’t when I wasn’t. From the therapist we added in a psychiatrist, who declared him to have a mood disorder and recommended medication. That’s a hard road to travel, so many trains of thought of what should and shouldn’t be done, what is good, what is bad, what is too much, what is too little, and to be honest, online mom groups are the last place you should be reading when going through something like this because you will be left feeling like any choice is the wrong one. I finally relented, needing desperately to get a fix for him at school. Each month we did appointments, continuing therapy sessions, adjusting dosages and times. We might make some progress but then it would feel like it would stop so we’d have to make some changes.

In August, we got a referral to a psychologist. When we first met with Babies Can’t Wait, I was told he was very likely on the autism spectrum, but he would need evaluations when he was older to figure out just what all might be going on in his brain. Well, here’s the really great news: our area has exactly two pediatric psychologists who take Ian’s insurance. There’s a lot of youth in our area on that insurance, so when they need to see a specialist like this, they have to wait a long time. In fact, his testing date was last Wednesday, December 7th, almost five months, and we were one of the lucky ones because this insurance in particular routinely denies this testing for youth. I mean why not, let’s make our kids struggle until they are adults and have bigger issues that have been ignored for years. But I digress. (Hot topic for me if you didn’t realize.)

This morning, as Ian left for school, I left for my commute to go wait for the 9 am appointment to hear the findings. His doctor is a gem, saw me in my car working in my notebook because I arrived at 8:30 and opened early so I wouldn’t have to continue waiting. For the next hour and a half we went over the nine pages of results he had produced. I had tears at times, and questions, and needed to take breaths and digest information (which took a lot of the rest of the day for me). But what I finally had were some answers, not necessarily ones that I wanted but ones I needed to have. I now have some tools to make both of our lives a little easier, and ways to help him overcome some challenges. I shot off an email to the school counselor asking for a meeting since he will now need some accommodations, who quickly responded after school hours even looping in other administration members who would need to be involved so they can help us help him sooner rather than later.

I don’t like to keep things from Ian, so I sat him down tonight and talked about his results, showed him the papers, and read the recommendations from his doctor. Ian is very self aware and knows that he’s often different from other youth, but not in a way that makes him want to change himself for them. I admire that so much about him. He was quick to say “yeah, that sounds like me” when I read some of the statements. Mostly, his only concern was if he was in trouble. He’s not, but we have to change some things about our routines that are going to be a little uncomfortable at times, and I’m just going to have to accept the fact that he’s going to continue to sleep on the floor instead of a bed until he decides otherwise (probably why he sleeps like a baby every weekend we camp). But I have also discovered that the nutcrackers can be a great negotiating tool, as one sits here by my laptop as a “deposit” for two tasks to be completed tomorrow after school.

Ian and I are going to do our parts to help him try to function better in our society, but my hope is that others will do their parts to be more accepting about those who are different. Too much pressure is put on parents to make their children conform, and those children suffer so much in silent until sometimes it is too late. We have been blessed to have people along our paths who pointed us in directions to get the help we need so he won’t become another statistic. We have to start having more open conversations about neurodivergents and mental health and remove stigmas. Stop judging parents, stop judging children, just stop judging. Teach open communication and acceptance, that of self and of others. Offer support, compassion, and love every chance you get, you never know when that one act may make the biggest difference.