Friendships can feel “tricky” for parents of kids with disabilities, and talking about friendships can bring up a wide range of emotions. Some people feel they lost their friends when disability entered the picture. Others feel their friends live inside Facebook and social media or online support groups. And yet others feel they have a strong support system.
Most of my friends are other parents of kids with disabilities. They get my life in a way other friends can’t understand because they do not walk in my shoes. But I also have a few friends who live a “typical” life (if there is such a thing), and their love, support, and encouragement has been a steady gift.
Regardless of who our friends are (or if we have friends), I think it might be fair to say most of us want friends who love us, accept us, and listen to us. Friends who “do life” with us and love our kids too. We want a friend to laugh with and cry with. A friend who sends us that meme they know we will appreciate.
We need friends.
We want friends.
We want our friends to understand the complications, intricacies, and joys that come with our lives. And I believe good friends want to know how they can “step in” our lives and be encouraging and uplifting.
We reached out to our Mighty parenting community and asked, “What do you need from a friend? How can a friend support you or encourage you?”
These are their responses:
“Never stop inviting us to things. Even if our lives are completely out of control and you’re 99% sure we won’t show. It hurts us telling you no but hurts even more not being invited.”
“I want my friends to not give up. I feel like I’m in a completely different world [from theirs] with therapies, testing and appointments… I miss my friends so much.”
“When we are overjoyed about a milestone that has finally been achieved well beyond ‘expected’ age, please share in our excitement and don’t come back with something awesome your ‘typical’ kid has done. Let us have those moments. But any other time, we love to hear about what your kids are doing, too!”
“Please don’t say, ‘I don’t know how you do it. Your life must be so stressful! I’m so sorry!’ Anything like that I’m shutting down because [it feels like] pity.”
“I need friends to be silent when they don’t understand my boy — I try to explain, I try to share awareness — so telling me what my boy does ‘is weird,’ I’d much prefer silence. Silence hurts less.”
“[I need] friends who don’t assume anything and provide support however it is needed. Sometimes, that means understanding when I have to cancel plans. It means understanding some days are setbacks and others are victories. True friends will not only be there to celebrate the wins but also be there to help you through the setbacks.”
“I have just a few really close friends. They hold my hand and let me cry on hard days. They bring me Diet Coke to the hospital. They take me to a movie or out for ice cream when I can get away. But most of all they love my children. They teach their children to love my daughter and what she needs in order to have friends of her own. Another thing my friends do is include my son in things their family is doing. He is able to be a ‘normal’ child and go on family trips with them. With my daughter and her medical needs we aren’t able to go swimming and [do] things like that. So my son gets to have ‘normal’ experiences with my friends. While I want to be able to give him everything, I can’t. My friends [step in] and include my son to allow him those great experiences.”
“[We need] understanding. We may have to cancel a play date or a night out at the last minute, don’t let that stop you from inviting us again. Sometimes we are tired and emotionally drained and we don’t want to talk. Sometime we need a listening ear. A nice message to say, ‘Thinking of you’ or ‘How are ya’ or ‘Coffee?’ If we cancel a date ask us, ‘Want me/us to come to yours?’ If in hospital ask if we are OK or need anything. Maybe be a designated driver for a night out.”
“I appreciate when the few friends I have continue to ask me to do something. Not nagging, just casually asking — 99% of the time I can’t, but there is an unspoken support [knowing] they will continue to be my friend even if I never get to do things with them.”
“I wish my friends would continue to share their lives with me. Call me, text me because you heard a funny joke or you just had to share what you saw on your way to work. Let me share in your life, instead of just being a listener to mine. It’s nice to feel some sense of normalcy and spend two minutes of the day outside my box.”
“It would be nice for a friend to offer to watch the kids once in a while so we can have a break. That would be so helpful.”
“I need my friends to be there for me. By that I mean, no advice; they cannot possibly understand what my life is, I just need love. Hugs, an ear to pour my heart out to, food.”
“I am blessed my best friend knows when I need help. She has spent hours in the emergency room with me. Brought me breakfast, lunch and dinner. Held my daughter in a hospital bed so I could stretch my worn-out body. Told me jokes and held me when I sobbed. Then when things were good, we were ‘normal,’ we didn’t keep bringing up the hard times. We laughed and enjoyed life, while it’s [calmer] and beautiful. Love, simply put, we need love from our friends.”
“[I need] understanding and grace. Sometimes, often, I’ll have to change or cancel plans. It’s hard to find a babysitter, especially if I want to go out of town.”
“We need our friends and family to believe our daughter is on the autism spectrum though in many ways she appears neurotypical. Her extreme reactions are to sensory overload, not because she is being ‘dramatic and manipulative’ and [in need of discipline].”
“I need friends who show their children how to include my child as they would include anybody. “
“Just to listen. Not give advice or say anything, but let me vent sometimes about it. What works best for me is talking about stuff; it helps me process. Also, give your time and understand most of the time you spend with us, our child will probably be there.”
“Patience. Living with a child with severe disabilities that could possibly end his life is exhausting. I am still the same person I was before his diagnosis, but my priorities have shifted. I don’t care about shopping or drinking. I care about keeping my child alive on a daily basis. I don’t want to hear, ‘at least you have two healthy children.’”
“Just show up with food and a hug. It doesn’t have to be a day my son got home from the hospital or a day that we had a ‘medical disaster.’ Just show up on a ‘regular’ day. When work was long, my evening caring for my son will be longer. Know that I am tired, and give me food and a hug.”
“I need them to not assume, not offer unsolicited advice, not judge what they do not understand. Understand that they don’t understand. Also, love him. Love him as you love me. Loving my son with special needs is my love language.”
“I wish someone would offer to learn how to take care of my son (he has a trach and g-tube) and then come watch him so I can go on a date with my husband.”
“I have those friends who say, ‘Let me know what I can do’ and those friends who show up with a dinner in a pot ready to heat, eat or who clean-up my house, or who offer to take on a task/errand for me, or text me that they’re picking up my older daughter from school and taking her to dance for me. So many are well-intentioned with their words (and I’m grateful for them), but those few women/men of action are the ones who really save the day!”
“I need my friends to be the ones who come over. I just can’t pack up and go to anyone’s house on a whim. I know this is true for all parents to an extent, but often, even when I can pack my kiddo up, our life has just been so busy and full of appointments, therapies, what-have-you that I don’t have the mental or physical energy to leave the house.”
“Friends who don’t judge, who don’t attempt to compare their situations and who allow you to drift in and out of contact without repercussions or expectations.”
“I have one friend. She’s my best friend. She listens when I vent, she checks on me when I’ve been too quiet, she helps me with ideas for my children and is always there for a good cry, coffee and a reenergizing talk.”
“Please stop trying to prove [my daughter] is ‘normal’ or ‘all kids do that.’ It marginalizes the daily battles we endure.”
“I need support, not sympathy, because our daughter isn’t a burden. I need friends to understand that ‘hanging out’ will have to be much more flexible and often has to include my daughter since my husband works two jobs right now to support us. I need friends who get that, for us, politics are extremely personal right now because every day we are terrified of losing the ability to pay for our daughter’s care and she may need care for life. And sometimes I just need a cup of coffee, to not have to worry about making dinner, or even a simple ‘Hi, how is everything going?’”
This post originally appeared on The Mighty.