We have a wonderful guest poster today for our Wednesday Women’s Spotlight, Lily Dagdag of SYT Biz. Today she is sharing just a few of the challenges she faces as a mom to a special needs child. I know some of you can relate so drop a comment below with your own personal challenges!
I will never forget the day that someone first uttered the words “Have you considered that your son might be autistic?” At the time, I hadn’t. I was so concerned with the fact that he wasn’t talking that I didn’t even consider his other behaviors or what might be causing them. We decided to get him tested, and he was officially diagnosed with autism. It’s been two years since the diagnosis and our lives have certainly been a roller coaster since then.
His diagnosis was one of the best things to ever happen to us because it helped us figure out why he does what he does. It was really helpful to have someone who has more experience with autistic children be able to tell us how and when to set boundaries with him. A couple of years ago I never could have imagined how far he’d come in such a short amount of time. He’s now very close to catching up to other kids his age, in a lot of different ways.
I’m grateful for the diagnosis, we’ve made a lot of positive changes since we put a name to his issues. But it also means a different life than one we ever expected.
Different, but not less.
(I can’t take credit for that one, it’s an expression I’ve seen time and again since I’ve started learning about autism. I just couldn’t resist sharing it because it’s so on point). Being a special needs mom has definitely presented some unique challenges, especially when it comes to running my business.
- Creating a schedule is nearly impossible. – I’ve heard it time and time again “Create a schedule! Batch your tasks! Plan out your days! Your life will be so much easier!” WRONG. I can’t speak for anyone else but in my case, but creating a schedule has been pretty much impossible. In between doctor’s appointments, therapy appointments and my other obligations, every single day is different. Any attempt to try to put my days into a box just ends with more frustration, not less. Especially because of my personality, it only frustrates me if I feel like I am falling behind schedule (a schedule that I created, in theory to make my life easier).
- Every time I get used to something, it changes. – There was a time when my son was obsessed with yogurt. All day every day it’s all he would eat. Then one day, I tried to give him yogurt and he threw it on the ground. I couldn’t figure out why. Apparently, he didn’t eat yogurt anymore. For someone who already had a very limited diet, it was difficult to think that he crossed one more thing off the list. Then he went through another phase of not sleeping at night. At the time my husband was a student so we adjusted our schedules to allow one of us to always stay up with him. After a few months he began sleeping normally again. In theory it was great that he had fixed his sleep schedule; in reality, it meant making more adjustments and changes to our routines.
- I constantly find myself buried in mountains of paperwork. – I am not by nature, an organized person. After Jordan received his diagnosis I was given a TON of paperwork. Places that could provide support. Benefits that I needed to sign up for. etc. etc. To this day, I have not gone through all of those papers. The amount of overwhelm that I felt when I opened that envelope, was only one of the reasons that I shoved it into a drawer and never looked at it again.
- Maintaining a separate identity isn’t easy. – It’s easy to identify yourself as a special needs mom. There’s organizations, Facebook groups, so many places to get involved. But in doing so, it’s easy to forget who you are outside of your role as a special needs mom. Add to that very little time for self care and your whole identity starts to revolve around your never ending to do list. As someone who grew up as one half of an identical pair of twins, I’ve always struggled to create and maintain my own identity, so this is an ongoing challenge for me.
- It is difficult to find time and energy for my other children. – I have three children, my son Jordan, and two daughters, Roselle and Emily. Roselle is my eldest and is an amazing child. She is constantly helping me with her brother and sister. In some ways, she’s grown up far too fast, especially as she has had to watch both of her siblings hospitalized from seizures on top of other health issues. I always worry that she’s not getting the attention she needs because I have to focus so much on her younger siblings (my daughter is currently being tested for autism and suffers from seizures like her brother). I want to make it more of a priority to spend one on one time with her, so she doesn’t always feel like she’s missing out.
Like anything else, being a special needs moms has its ups and downs. I’m grateful for the resources I’ve been given, because they’ve helped me and my son come a long way. I’m grateful for the lessons I’ve learned in slowing down and making time for the things that matter. I know that no matter what comes my way, I’ll figure it out with the help of my support system. If you’re facing similar challenges and it’s starting to feel overwhelming, get help where you can. You don’t have to figure it all out today.
Lily Dagdag is the co-owner, along with her twin sister Patricia, of SYT Biz, a WordPress web design firm. The daughter of a computer engineer, Lily’s been using computers since the age of 6, and she hasn’t stopped since. She loves helping mompreneurs take their businesses to the next level with professional, beautiful websites. In her spare time, Lily enjoys lots of coffee, shopping for office supplies, and occasionally binge-watching Netflix.
You can learn more about Lily at her website SytBiz.com.