Every year I try to post at least one time an updated letter for parents of newly diagnosed children on the spectrum; things that I wish I might have known or heard from others at the start of our journey. It started as a project I joined and I’ve just kept doing this since. I think it’s also a good reminder of things for parents who’ve been on this journey awhile as well. Here is this year’s letter.
Dear Autism Mom and Autism Dad,
I’m writing you this letter to bring you both hope and tell you things I wish I’d heard when Em first had her diagnosis; if I knew then what I know now kind of thing. To be honest, I wish I knew a lot of things when our journey first began. Emelie received her diagnosis late and there are times I have struggle wondering if I had pushed harder, would her diagnosis have come sooner? Would we have been able to better her cope with life sooner if she’d had the therapies to help her function in environments that stressed her out? How different would her life be now had we did all the early interventions then. At the end of the day, all the questioning in the world won’t change the fact that here we are, a little over three and a half years later. She’s fourteen and a half years old and living and loving life most days.
She has a diagnosis of ADHD, ASD (Autism Spectrum Disorder), Anxiety, and Sensory Processing Disorder. She also deals with vitamin D deficiencies and has asthma, seasonal allergies and scoliosis. She takes a balance of supplements, medications and therapies to get a healthy balance in life. She loves solitude and quiet. She loves acting in plays and musicals. She loves animals and anime. She will spend all her time either drawing or on her computer. She has many common interests with her peers. She struggles with communication and reading body language so social interactions are limited and can be challenging. However, there is absolute hope for her future.
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 and how to cope in situations life has gotten better for all of us. We learned to communicate better as a family. We slowed down. We planned our life out a little more purpose driven. And yes, there were times we felt alone; but we also found support in unexpected places. The struggle was to learn to value our roles and appreciate it each other, but in time as we learned about each other’s needs we realized how much we need each other.
She’s one of the girls with autism that fell into the crack. She doesn’t fit this stereotypical ideal that society seems to imagine when they hear autism. Emelie is social. She can hold appropriate conversations, when she chooses to. She wants friends. She doesn’t like groups and while she fixates on things, they change like the wind sometimes. She can problem solve some days. While she still struggles with communication, she has found ways to share her needs. It didn’t all happen overnight. She still has to pace herself but she is using her coping skills 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 that it’s going to be ok. Take time to grieve your expectations for her but please realize 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, just maybe not success in the way that you think.
Right now confusion, guilt and trepidation are running through your mind. Emotions are taking over and the future seems overwhelming and you want to know where to begin. First, it’s not the end of the world even though it may feel like it. Take each day as it comes. Follow your gut and if something doesn’t feel like it is right or there is a therapy you think will benefit your child don’t be afraid to fight for it and be 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. You’ll find that this journey is a lot like a cha-cha. You may take 1 step forward and 2 steps back one day and the next take 4 steps forward and 1 step back.
As a parent, don’t dwell on 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. Learn to pick your battles. Some battles aren’t worth the energy. One of the best pieces of advice I can give is to be consistent and learn that fluid routines will help. If your child has a food aversion, feed them what they will eat today because tomorrow it may be a struggle to find one food they will eat.
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 or locking yourself in the bathroom with a book. I need you to know, love yourself above all. They do hear and observe us even if you don’t think they are. They may not be able to tell us they love us, hug us or look at us but they do love us in their own way.
Above all else, cling to the successes, happiness and love when they are screaming or yelling that they hate us for taking and making them do a non-preferred activity. It’s OK to get frustrated and want to walk away. It’s OK to pause, take a few deep breaths and regroup. I used to tell Em that mommy just needed a timeout. Just remember to come back. If you don’t fight for them or be there for them, who will? Just like everyone else traversing similar paths, you will find your way too.
Each day is a new day and when you least expect it your child may blow you away when they overcome an obstacle. A diagnosis doesn’t define who your child is; they do. Above all else, love them.