To the Struggling Autism Parent,
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 CANNOT do. My family has 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, and was brought to my knees once the reality of this diagnosis sank in. Chances are, you are in a dark and lonely place right now and clicked on this post because the words “struggling autism parent” spoke to you.
I know those words. I’ve lived those words. And I am living proof that you will get through this.
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 okay. Some of your friends will stop coming around, because it makes them uncomfortable to see the struggles you’re faced with on a daily basis. Their child is meeting every developmental milestone at the recommended age, while your child is still sitting at the starting line, unable to even figure out how to begin the race.
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 beaten down, 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 parent you are to your extra special baby. Those 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 bad ass parent you are.
You can’t do this alone, and I suggest you acknowledge that sooner rather than later.
You NEED someone who knows exactly what you’re going through. So reach out to another parent 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 your unique situation, 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 celebrate your child’s victories with; the one who’s willing to drop kick anyone who messes with you or your kid; 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 parent 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 need to do. Sometimes that’s all you CAN do. AND THAT’S OKAY!! Don’t you dare 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 feel terrified of what the future holds for your child, and overwhelmed because you have no clue how to prepare your child or yourself for it. You will be angry that you will constantly have to fight the system to get your child the services he needs. But you will feel like freaking Superman when you succeed in winning one of those battles!! You will be sad that you may not ever hear your child say, “I love you.” But you will be hopeful that maybe one day you will…
You will be stronger than you ever imagined possible, even when you feel like you’re about to break. You will be proud of everything you have done for your child, and you should be. 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, babysitters, 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 have made about different parenting styles will begin to dissolve. Because you know how much it hurts when someone makes you feel like an inadequate parent. 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 who shows you so much beauty in the world that you otherwise would’ve missed. 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 all of her peers. 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 the loving parent she needs.
With love and lots of hugs,
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Click here to read my post Why It’s Okay For Special Needs Parents to Grieve