Open Letter to Newly Diagnosed Autism Parents

Dear Autism Mama and Autism Daddy,

I wish I knew a lot of things when our journey first began.  Our daughter received her diagnosis late and there are times I struggle wondering if I had pushed harder, would her diagnosis have come sooner? Would we have been able to better her life sooner with therapies to help her function in environments that stressed her out? At the end of the day, all the questioning in the world won’t change the fact that here we are, a little over a year later, she’s 12 years old and living and loving life.

Her full diagnosis is ADHD, ASD, Anxiety Disorder, and Sensory Processing Disorder. I saw all the signs and all the “red” flags but I didn’t push it or follow my gut instinct.  As she went through her therapies and found“grounding” in life, life got better for all of us. We communicated better as a family. We slowed down. We planned our life out a little more purpose driven. And yes, we felt alone, but we also found support in unexpected places. We value each other (mom, dad, brother and her) and we look at what it is that everyone needs.

She isn’t one that fits into a box. She is social. She can hold appropriate conversations. She wants friends. She doesn’t like groups and while she fixates on things, they change like the wind sometimes. She can problem solve. It didn’t all happen overnight. And she still has to pace herself but she using her coping skills (sometimes with prompting) to get herself through tough situations. Things that used to be dynamite on a fire for a meltdown are now sparklers blowing in the wind. It bothers her but it isn’t the end of the world.

I wish someone would have told me, it’s going to be ok. Take time to grieve your expectations for her but it isn’t the end of the world. She will live life more than you can imagine. She will do everything with her whole heart. That’s more than most of us can say. She will struggle but with some encouragement and time, she will get back up and press on. She will succeed at whatever she sets out to do. It’s not the end of the world. Follow your gut and if something isn’t right or there is a therapy you think will benefit your child, fight for it and being heard. This road won’t be easy but the blessings and joy are worth the time. It may not always seem that way, but you’ll get there someday. And don’t beat yourself up over the bad days.

As a parent, don’t dwell on the would have, could have or should haves. Focus on the here and now and do your best to plan for the future. Take mini moments for yourself. Don’t feel guilty for allowing your child to have time with a preferred activity if you aren’t up to the fight. Now don’t do it all the time and be consistent. Pick your battles. Know it’s ok if your child is living off chicken nuggets and pancakes. Feed them what they will eat because tomorrow it may be bologna with ketchup and toast with peanut butter.

As for taking care of yourself, let go of the guilt or anger. Focus on things for yourself, a cd or book that you can unwind with. Take moments to yourself. Even if that moment is shopping for groceries by yourself. And love yourself above all. They hear us. They may not be able to tell us they love us, hug us or look at us but they do. Even when they are screaming they hate us for taking and making them do a non-preferred activity. I used to have to carry her off the playground upside down protecting my face from her nails, while she screamed and shrieked all the way home. Nine years later and she can tell me that she’s mad at me, but agrees to stuff. And sometimes it’s ok to negotiate and compromise. Just know where your line in the sand is.

And don’t dwell on a bad day. Each day is a new day and it may be the day your child blows you away.

Love,

Jennifer

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