A Letter to Special Needs Parents that Will Break Your Heart & Inspire You

To Parents of a Child on the Spectrum,

I get you.

I feel you.

I understand you.

Isolation greets us many days but you’d never admit that fact out loud. Your body aches from being on top of your child’s needs, triggers, warning signs, and calming tools.

You’re in it 100%. You have conviction and know what you have to do every day. You believe with all the beats of your heart that your child’s greatest challenges are indeed his biggest gifts.

I get you.

You feel secure, but you also feel vulnerable.  There are many moments during the day when you feel like you’re going to break, you feel ashamed, embarrassed, hurt, and you feel like there is not a single soul in this world who would get the situation.

Here is the thing, though; close your eyes, and imagine you’re feeling the support of a thousand people. You are. We’re here together even on the loneliest days. I get those moments.

…when you hesitate to move forward with a plan to meet up with friends and their kids…I am with you.

…when you do cancel a family get-together at an old friend’s house because you can’t face other families with “typical” kids…I am right there next to you.

…that fear your feel bringing your family to a get together will ruin everyone’s time, or at the least, make others feel uncomfortable.

…when you regret the treat you gave your child.

…the stares you receive for allowing your child to use a device too often in places you never imagined you’d let him stare at a screen

…those silent head shaking back and forth from strangers not realizing how loudly you hear them

…that feeling of having no friends and no outlet because you don’t have the time if you desire to stay on top of your child’s life

…the visual schedule

…you realize it has been months since any friend has invited you and your child to their home

…you decide not to have the holiday party

…you cancel a dinner date with your partner

…the half hour by half hour schedule

…the sighs from doctors.

…the parenting your kids by your friends in family in front of you with the most prominent approaches that you know don’t work with your child

…that sinking feeling that you’re totally fucking up your child

…the sense that your DNA caused the pain for your child and your family

…the feeling that life without your child would be easier

…the sense that your child is ruining his siblings’ childhood

…the feeling that you’re not dealing with the stress well

…when your child spit in your face

…when your child bites you and the bruise to remind you for the next week

…when your child hits you

…when you almost call 911 because you’re afraid of your five-year-old

…when you’re holding your child after the rage passes, stroking his hair, kissing his head lightly telling him you love him and that you’re there for him

…when you’re holding your child after an outburst, and suddenly you feel like you’re going to burst from raw, intense love for this small being who at that moment can only seem to stare out into what appears like nothing. You wonder where he is right now, and you hold him a bit tighter.

…when you stand in your child’s empty bedroom filled with literally nothing to keep it safe for him and your family

…when you tell you seven year old to watch your two-year-old while you stand ground with your five-year-old

…when you realize, understand, and accept your child is negatively your marriage and your family life

…the feeling of absolute helplessness and desperation of texting your partner that you can’t handle your child physically by yourself

…the guilt of your partner leaving work early to meet you on the side of the road because it isn’t safe enough for you to drive with shoes flying at you and a child that refuses to stay buckled

…the feeling of watching your Pediatrician’s eyes scan you and your baby as you explain his behavior. All eyes on you. I get it.

…when you know you know your child is not typical…I am right there.

I get you. I am here. Close your eyes. In those moments, especially, close your eyes. We will get through these moments and come out better, stronger, and more capable than we ever thought possible of ourselves and our children. Remember your child’s challenges are his greatest gifts. Repeat. Your child’s challenges are his biggest gifts. Repeat. Again and Again and Again.

I am right here.

Marnie

PS. Take a moment to join my good friend Dayna’s (of Lemon Lime Adventures) Support for Sensory Needs group on Facebook. You will find not only tremendous support but also resources and a safe environment for your needs.