Seven Steps to Honoring Your Friendship in a New Autism Diagnosis
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 that will give her the amazing gifts that I can provide my typically developing child.
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 a part of an online mom group for years. I figured they may have some insight so I shared this post:
So this is so selfish but I am sitting here wishing I could pray Serrie to health I have had wine to be honest but I swear some days I just wish I knew what she 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 that noted 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, it was that 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 that take the time to check in or listen as I cry or lament the cards we have been dealt, 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 while I am living with 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 struggles, my struggles are no less or no more important than your own, they are just different. I still want to hear about your child, even though I may wish my child was meeting those same milestones, I am truly happy for you and your child in your life.
2. I still need you. Perhaps I need you now more than ever. I am the same mom but I am now mourning the child I imagined. I dreamed just like you did of my child moving through life at a typical pace and though physically my child will still be present in my life, I have lost the child I initially thought I had and I am saying goodbye to the dreams I had for this child. I am slowly creating new dreams and new goals but its a process that 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 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 suffering, leaving my side will only make me suffer 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" the diagnosis. 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. Bare 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 its truly appreciated. This summer my own kids sat through up to 7 therapies a week. Though they did it most often with a smile 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. Its not you. I am learning to understanding my child and their 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 in this world is not easy. I never thought it was but parenting with a child with special needs has proven that ten fold. I have had the fastest education as to exactly where we as parents succeed and fail. I know that in the past I am certain I have not been the friend that I should have been when my friends have experienced a new diagnosis but now I have a better understanding as to how. As parents, lets learn to love out children and each others children for who they are without turning our back instead with embracing the unique qualities of each child.