Being a mom is tough and the comparison game is real, but as much as I hate to say it, the ‘special needs mom’ role exceeds tough. It is challenging beyond what you could ever imagine. When you enter the world of parenting a special needs child, your world as you knew it disappears. You go from a life of happiness and laughter to one where you have to do everything in your power to survive while conquering your child’s diagnosis. Life gets overwhelming.
Simply playing with your child turns into therapy session after therapy session, with guilt in between if you take anytime for yourself. You become all of the different therapists they need as well as an expert on their care. As time goes on and you get into a routine, things get easier, but your whole life revolves around your child and doing what’s best for them to succeed. Your mental health gets put on the back burner and fears of the unknown resurface more often than not, preventing you from being wholeheartedly happy. I’m not going to pretend like I know everything about being a special needs mom, because I am new to this, but I’m sure a lot of others can relate.
In February 2021, after 8 months of diagnostic testing, our 22-month-old daughter Emma was diagnosed with KAND (kif1a Associated Neurological Disorder), a very rare neurodegenerative disorder affecting around 300 people worldwide. There are no words to describe the whirlwind of emotions we have experienced with this diagnosis. Every little bit of support we have received means more than people will ever know. There are a lot of people who want to be there for us but just don’t know how. Here are 7 things you can do to support special needs moms like myself.
1. Don’t Be Afraid To Talk About My Child And Their Diagnosis
This might differ from mom to mom because some might not be as open about it or it might be too hard to talk about it. For our family, it is the opposite. We find that a lot of people, mostly our friends, pretend like nothing is wrong. They don’t talk about it or ask questions. I know it’s probably because they don’t know what to say or don’t want to upset us, but we like it when people genuinely show interest in what we are going through. We like to explain exactly what our daughter is up against and the challenges she has faced and will continue to. We like to educate people on her diagnosis because of how rare it is in hopes to bring attention to the disease itself so maybe one day there will be a treatment or cure.
2. Know I Am Not The Same Person I Used To Be
Before my daughter was born, I was fun. After she was born, I was still fun, but in a different way. Since her diagnosis, I have not had the opportunity to be ‘fun.’ I often don’t feel like myself no matter how hard I try. Hanging out with people is awkward. My sense of humor has changed and topics of conversation have become much different. My social anxiety kicks into high gear and I often don’t know what to say. I’m hoping one day I can go back to the happy/fun person I used to be, but until then, just love me for who I am today while you wait for this to happen. And if it doesn’t happen, still love me.
3. Don’t Be Afraid To Talk About Your Kids
It’s okay to talk about your kids and their accomplishments. At first, this was something I really struggled with because the comparison hurt. I’d be lying if I said it still didn’t hurt to see the differences between my daughter and typically developing children, but it’s something I have been able to mostly let go of. I know my daughter is different, but she is perfect in her own way. You talking about your children gives me a sense of normalcy in our interactions.
4. Spread Awareness
A lot of people don’t realize the amount of people in this world affected by disabilities. There is a HUGE amount of different rare diseases out there no one even knows about. When you meet someone with a disability, ask questions and educate yourself about the disease. Then go and tell someone about it – anyone. The more people out there who know about it, the better chances of finding treatments/support.
5. Treat My Child The Same You Would Any Other
Just because my daughter is different doesn’t mean she is not a person. You can talk to her just like you would anyone else. You can play with her like you would with others. She enjoys a lot of the same things most kids do even though her ability is different. Teach your kids to include mine in things so she doesn’t feel like she’s missing out. Inform them that all kids are different to decrease the chances of mine feeling inadequate.
6. Acknowledge Our Hard Work
Sometimes I feel like I don’t do enough. It seems silly because I spend 24/7 doing everything possible, but yet I feel guilty at times. All it takes is someone to tell me I am doing a great job to make me realize I am. Every time someone says to me, ‘You are doing amazing,’ it instantly brings me to tears. It reminds me of all of the hard work I do for my daughter, allowing me to let go of those ridiculous feelings of guilt.
7. Don’t Feel Bad For Me
I don’t want people to feel bad for me and what I am going through. It’s been hard, but we are okay. My daughter is a blessing, and although her future is unknown, she has changed my life for the better. She will continue to teach me to become the best version of myself and I will do everything in my power to help her succeed. Don’t feel bad for me, but please keep showing your support, because without that, this would be that much harder.
Before becoming a special needs mom, I had no idea what it entailed. I am guilty of not following the majority of the list I just made because I was oblivious to it. I had no idea what to say or what I could do to help. I’m hoping this might help people who have a close relationship with parents of special needs children. The way you approach them might significantly change the way they feel.
This story was submitted to Love What Matters by Amanda Burritt of British Columbia, Canada. You can follow her journey on Instagram and Facebook. Be sure to subscribe to our free email newsletter for our best stories.
Read more stories from Amanda here:
‘You’re so strong…’ 3 little words I often hear as a parent to a very special girl.’ I don’t want to be, but here I am, giving the middle finger to her diagnoses.’: First-time mom shares special needs journey
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