Yesterday, I sat in that haze again. I have kept myself busy. I enjoy the exercise I get in while my children are at school, but I don’t enjoy it nearly as much as I would like to — because I am constantly wondering if my child is safe. I am constantly wondering how I can move her forward and provide her a life that will be fruitful and give her the amazing gifts I hope to provide for all my children.
As I put my little ones to bed last night, I reached out. Though I could have called and polled my friends, there was a part of me that didn’t want to talk about it — but I did want the answers. I have been part of an online mom group for years. I figured they may have some insight, so I shared this post:
I have had wine to be honest, but I swear some days I just wish I knew what Serrie was thinking. I am so grateful for all I have, but there are moments I wish I knew. Is this normal? I wonder because so many of my friends “avoid” talking about Serrie… Why is our society so afraid of special needs? It makes special needs families feel lonely.
I am grateful because within just a few minutes I had responses. One response that surprised me was one noting a bit of discomfort due to being politically correct or fearful of saying something wrong. I am the queen of saying everything wrong, so I guess it never occurred to me when people were quiet, it wasn’t always a slight or a way to distance oneself — sometimes people may not say anything at all because they think they are doing what is best. No matter what they think is best for me (or other parents with a new autism diagnosis), the worst thing I can hear is silence. That lonely feeling I get when I think of what my child is thinking or wanting to say is magnified with friends who are silent. Every time a friend says “I saw her smile,” it lights my life. Every time a friend says “She said xyz to my child,” it gives me hope. And every friend who takes the time to check in or listen as I cry truly touches my heart.
I am fairly certain I am not alone — so today, I am letting you know my take on being my friend as I parent a child who has autism:
1. I am the same mom (and friend) I was before. I am no different from you, and though I have a child with distinct challenges, my challenges are no less or more important than your own; they are just different. I still want to hear about your child. Even though I may wonder about my child meeting similar milestones, I am truly happy for you and the child in your life.
2. I still need you. Perhaps I need you now more than ever. I dreamed, just like you did, about how my child would move through life, and I am now saying goodbye to some of those dreams. I am slowly creating new dreams and new goals, but it’s a process I have never walked before, and I need all the support I can get. Please don’t leave me alone. I need you. One day, I hope to be able to be the one you need once again.
3. My child is still my child. She or he is no more or less than my other kids. I love my child. Completely. I may feel overwhelmed or defeated sometimes, but that does not mean I love my child any less than I did the day before my child’s diagnosis. Please don’t ever ask me to leave my child out. That is the most painful thing you can do.
4. If you don’t know what to say, just be there. When you turn your back, walk away or say nothing, I wonder what I did wrong. I am already struggling; leaving my side can only make me struggle more. Please know your presence is truly appreciated, and though I may not know how to thank you, I am grateful you are near.
5. This road has major ups and downs. You may think I am “over” how the diagnosis has changed our lives. I may be “over” the initial shock, but as I travel this new journey, I will find myself having amazing highs and amazing lows. That may transfer to my daily life and my mood. I am sorry. Bear with me. This is a journey that has no end.
6. If you want to help, help with my other kids. One of our greatest fears is trying to meet the needs of our child with special needs and neglecting the needs of our other children. Though we may not be able to reciprocate immediately, it’s truly appreciated. This summer my kids sat through up to seven therapies a week. Those times they got out of it were truly gifts — not just to them, but to me.
7. If I say I can’t go or a party is too much, trust me: It’s not you. I am learning to understand my child’s unique needs. As I understand them, I will be better prepared to venture out into the world. I will be able to take you up on outings and parties, and I will have your support in those events.
Parenting is not easy. I have had the fastest education as to exactly where we as parents succeed and fail. In the past, I am certain I have not been the friend I should have been when my friends experienced a new diagnosis, but now I have a better understanding as to how. As parents, let’s learn to love our children and each other’s children for who they are without turning our backs — but instead by embracing the unique qualities of each child