To the Struggling Autism Mom,
I want you to know that I have been where you are. I have gritted my teeth during those countless evaluations that remind me of everything my child CAN’T do. I have spent a small fortune to have my child evaluated by the most renowned developmental pediatrician in the southeast…and then I actually questioned whether his diagnosis was accurate. I allowed myself to stay in denial for longer than what was logical. I have been faced with reality and brought to my knees once the devastating truth had time to sink in. You are probably in a dark and lonely place right now and clicked on this post because the words “struggling autism mom” spoke to you. I know those words. I’ve lived those words. And I am living proof that you will get through this.
This journey will be hard, long, painful, and unpredictable, but you will eventually find your cruise control. This journey isn’t the kind with an ending. However, you will eventually learn how to always keep the future within view and keep on moving. You will be bruised and scarred from fighting countless battles for your child. But those bruises and scars are medals of honor that should be worn proudly. They are proof of what an amazing mom you are to your extra special baby. The wounds that run deep… all the way down to your soul… those are the ones that make you the strongest person in the room at any given moment. Sport those medals like the rock star mom you are.
You probably feel alone right now. All of your friends have “perfect” kids and now you feel as if your kid is somehow broken. You try to talk to your friends because you feel lonely… but they don’t get it. Some will put forth a legitimate effort to understand. But they won’t. That’s ok. Some of your mommy friends will stop coming around, because they feel guilty about their child meeting every developmental milestone at the recommended age. Meanwhile, your child is still sitting at the starting line, unable to even figure out how to begin the race. It makes people uncomfortable to see the struggles you and your child face on a daily basis. Let these friends go. This special new world that you are now a part of doesn’t have time for people like that. You will be ok without them. I promise.
Reach out to another mom with a child on the spectrum. Reach out to a complete stranger with a child on the spectrum. Reach out to an autism support group. Reach out to ANYONE who understands what you’re going through but just promise me that you will reach. And keep reaching until you find your person who gets it. When you find that person, it will be transforming. Hold on tight because this person is now your lifeline… The person you call after an epic battle with your insurance company; the one you can’t wait to celebrate with after your child meets a milestone; the person who will sit with you in total silence because you’re both too tired to talk but too broken to be alone.
Accept the fact that you can’t be your kid’s super mom all the time. You will want to be and you will feel like a failure when you can’t live up to your own expectations. But guess what? All your child needs from you is for you to love them and provide their basic needs. Some days, the bare minimum is all you will be physically capable of doing and you have to realize that’s ok. Don’t feel guilty for not being able to do it all. Realize that there are so many people who want to help you but they don’t know how. So don’t be afraid to SPEAK UP and ask for help! When people ask you what they can do to lighten your load, tell them! The phrase “it takes a village…” takes on a whole new meaning once you become a special needs parent.
You are going to feel things that you didn’t know the human soul was capable of feeling. You will be bitter that you were dealt this hand. You will feel jealous of the “perfect” lives your friends appear to have. You will be terrified of what the future holds for your child. You will be angry that you will constantly have to fight the system to get your child the services he needs. You will be sad that you may not ever hear your child say, “I love you.” But you will be hopeful that maybe you will hear these words…
You will be stronger than you ever imagined possible. You will be proud of everything you have done for your child. You will be grateful for all the people who stuck around through the darkest times and helped you find your way. You will develop a new sense of respect for therapists, teachers, parapros, and anyone else who truly understands your child. You are going to become more tolerant of people who are different from you. The judgmental comments you used to make about moms with different parenting styles will begin to dissolve. Because you have been judged on some parenting choices and you never want to be responsible for causing the same heartache you suffer when someone judges your parenting choices. You will experience a type of love that is so intense and pure, it will enable you to move mountains if that’s what your baby needs.
And then one day…Out of the blue…
That bitterness will fade. The jealousy will dwindle. The anger will transform into drive and the fear will be replaced by hope. You will realize how blessed you are to have this unique child to show you the world from a different perspective. You will embrace your child’s differences and stop seeing them as short comings. You will gradually begin to notice that you are no longer comparing your kid to every other kid around her age. Most importantly, the day will come when you will stop over analyzing everything your child does and you will remember what it feels like to just be her mommy.
With love and lots of hugs,
Summer
if you are having a hard time finding “your person,” email me and I will be your person: shallmark24@gmail.com
Read more about our journey here
