5 Things I’ve Learned as a Special Needs Parent

Parenting itself is a journey you’re never really prepared for. You’re constantly learning something about your kid[s] and learning how you respond to them every day. But there’s something about being in the special needs parent club that adds a sense of unknown. We’ve had Jackson’s autism diagnosis for over a year now and even though he’s not a severe case, once you’re in the club, you’re in for life.

In the past year, I’ve learned a number of things that obviously come with becoming a parent in general but with the special needs parent spin. Perspective is everything and I think shedding light through a different lens for others is both empowering and enlightening. Knowledge is power.

PATIENCE

I have always been an extremely impatient person. Let’s be real – I still am. But these last couple of years have tested and taught me how to help that. Much like any kid, Jackson gets frustrated when things don’t go his way. But the difference with J’s case is his lack of verbal communication. Usually, kids are able to communicate with their parent what’s bothering them to some degree. The fact that we have to attempt to interpret Jackson to help ease the situation is stressful. Then throw his SPD [Sensory Processing Disorder] on top of that and try to figure out why he’s doing certain things without being told. It’s like we’re staring at an object to get it to speak.

STRENGTH & RESILIENCE

A lot of people asked me if I cried when we got his diagnosis. My answer was no because we already knew. After the at-risk screening, we knew in our hearts that this was only the beginning. I can’t speak for Matt, but I know putting my own pride aside was the most difficult part for me. Taking J for his initial evaluation at 19 months made me feel helpless and terrified because I had no idea what to expect. But through it all, I have developed so much strength for Jackson and resilience as a result. This wasn’t planned but yet, we’ve handled it with as much grace as we’re capable.

The ever-going evaluations, therapy hours, insurance conversations–they never really end, but this is our new reality, and we can’t just ignore them. Jackson has taught me to tackle things head-on and respond to each new obstacle with a semi-clear head. I’ll forever be grateful. Some days I wonder about the day I send him to school without wondering if someone will tease him for acting differently. But we’ll cross that bridge when we come to it.

FOCUS ON THE PRESENT, BUT PREPARE FOR THE FUTURE

While trying to imagine Jackson’s future, we also have to stay a step back and acknowledge where we all are currently. Trying to picture the unknown is exhausting and honestly terrifying, so why stress it? Part of Jackson’s growth is celebrating his wins, big or small. For example, we just finished round 2 of intense ABA [Applied Behavioral Analysis] potty training, and he’s still not potty trained. He showed a lot of growth, and, of course, we wanted him to be in some undies before Baby Simone got here, but if it’s not happening… that’s what it is. Maybe third times a charm, and it’ll completely click in the spring. Until then, we’ll continue with diapers and handle things as they come up. We also have no idea if and when he’ll ever speak. Are we stressing it? No, but it’s frustrating as hell. So we’ve learned other ways to communicate with him. You’d be surprised how many ways there are to communicate other than using words . . . .

BEING PREPARED FOR ALL THE EVALUATIONS, OFTEN

These will literally never end, but they have gotten easier. With each new company, quarter, therapy or doctor, an evaluation must take place. Whether it’s of Jackson or Matt and me, they must happen. At first, I took them very personally and overthought each question. Now, I completely understand no one is out to question our parenting choices or why J does or doesn’t do certain things. These people are actually interested in helping us and are just trying to get to know the situation better. CRAZY, RIGHT!? Unlike the art he’s made over the years, I’ve kept every single evaluation since the beginning of this process, and I look forward to the day I go back and read his very first one. Why? Because that growth will be exponential, and I know I’m going to ugly cry. Because I’m so proud of Jackson, and I’m so proud of us.

As special needs parents, we set goals and do whatever is necessary to achieve them.

FEEL EVERYTHING COMPLETELY, EVEN IF THAT MEANS CRYING

I was recently interviewed for a podcast where we discussed motherhood and how I personally handle the trials and tribulations of being a motherless daughter having my first daughter. (Unrelated to this topic but what follows does.) I have moments, weeks, sometimes months apart, where I get hit with the thought that my mom will never meet my children, and it paralyzes me. How do I handle it? I allow that feeling to completely overtake me whenever it does. No fighting it or sucking it up to hide it.

Sometimes crying and feeling every single bit of every emotion you feel is necessary, even the not so bright and shiny ones. You can’t fully embrace the sweet without the sour, so feel it all HARD. Matt and I have these moments, as special needs parents, constantly, at the most random times you wouldn’t expect. Something very simple like watching a dad walk down the street with his son can trigger Matt because we aren’t able to do that with Jackson because he will take off and has no receptive language [will not respond to his name].

Understanding these emotions will happen is half the battle.

It’s hard being a special needs parent, but it can also be one of the most rewarding things ever. Each win is worked for so intensely so when it happens, it’s a win for everyone involved, not just the kid.