Include, Embrace & Support | How To Be A Friend To A Family With A Special Needs Child

My son was diagnosed with autism at age 2.5. Sitting here 12 or so years later we've all learned so much (and continue to learn) about life and compassion and kindness and struggle and celebrating successes. 

Our stories are intertwined. His and mine and ours. Mine wouldn't be the same without him. I've said it out loud many times before, I am a better person because he is a part of my life. 

As I reflected back on our path I started thinking about the people who have supported our family, and Simon specifically, along the way. The teachers, the personal friends, the internet friends. The ones who simply included and invited and embraced and supported and showed up and accepted and loved without judgement or expectation. 

I thought about how, all along, we have been simply doing the best we can with what we are facing at each point along the way. Sometimes we have been awesome at dealing with the challenges and other times there is simply not enough emotional energy left. That's the ebb and the flow of it all - we are all a work in progress. 

Here are some suggestions I'd like to share - gentle suggestions if you will - about being a friend to a family living with autism (and because my experience is with my son I'm going to use the word "he" when referring to the child - also, I use both the terms "autistic" and "with autism" interchangeably). As you'll see, I've also included some thoughts from a private message board I participate in for parents of kids with autism: 

Include, include, include. And invite, invite, invite. The families may say no every single time but keep inviting and keep including. Give the family the chance to decline because in doing so you make them feel welcome and cared about and included. Don't just assume. It can be very easy to socially isolate your family when your child is different - for a million different reasons (not wanting to talk about/address the disability, not wanting to deal with behaviors publicly, just being super tired from daily living challenges, not wanting to have to see the differences played out in front of you again - sometimes it's simply easiest to stay home for the kid who doesn't like change and chaos). Be gentle and flexible and don't take it personally if they don't/can't respond to your invites. They may simply be in a season that is very hard - meaning that they need your love and support even more. 

From K : Being the parent of an autistic child can make you feel isolated. My son has not yet expressed these feelings yet (hes 5) but it pains me to know that he will eventually feel left out of things because of his differences. Teaching your children very young to be kind to people of all abilities is so important. Also friends telling me that they're sorry when I talk about my son. Do I wish things were easier for him, of course, but there's nothing to be sorry about. I have a healthy, beautiful kid that makes me smile and laugh everyday and gives me such a different view of the world. I also know much more about sharks and space satellites than I ever thought possible.

From C : If I cancel last minute...there probably is a reason like school went bad, or he's heavily agitated. It does not reflect on you. Sometimes it's just trying to protect your toddlers from his volatile behaviors. I may still be able to talk or text with you later.

Embrace, embrace, embrace. Open your heart a little wider for both the parent(s) and the child. We are in no way shape or form "sorry" that Simon is our son. He is the best and one of the most awesome people we know and we celebrate all the things that make him, him. Support us with loving kindness. Celebrate him alongside us as part of our larger support team. 

Talk to your kids about embracing and including kids who don't follow the norm and then show them by your own example what it means to be a kind human being. Create opportunities for interaction and then talk about about it afterwards.

From J : Acknowledge my child. Say hello, greet him the same way you would anybody else. Ask him how he's doing, even if you think he won't answer. If you are unsure about how to interact with him, ask me, I'll facilitate. This sounds like a no brainer but it happens all the time for us.

Support, support, support. Ask how you can help. Sometimes just having a person to support you at meetings - even if they aren't an expert - is so very welcome. Babysit - get outside your own comfort zone to give your friend(s) a break to go to dinner or run errands or whatever it is they might need. Support us by celebrating all the little + big successes. "Because we never take progress for granted, parents who have kids with special needs are proud of their children's smallest accomplishments." (source) We talk a lot around here about how we are "all on the same team." Be a member of the family's team and let them know you are on their team. 

FROM T : If my child is having a meltdown in public, if appropriate, ask if I need help rather than stare in judgment or make unhelpful comments. 

Show up. Show up for the kid - meaning, be his friend. Acknowledge him just as you would any other person. Talk to him even if it's uncomfortable at first. Get to know him as a human being. Showing up might mean the awesome opportunity to listen to him talk about time travel for an hour (we absolutely believe that creating boundaries are okay too). Showing up might mean taking him to the movies and buying him popcorn and helping him remember the "no-talking in the theater" rule when he wants to make very sure you are seeing all the things he's seeing (and seriously going to the movies with Simon is the best because his enthusiasm for stories in unsurpassed). Showing up might mean hanging out with him for an evening or an afternoon so the parents can have a date night or a break or go grocery shopping on their own. 

Showing up also relates to being a friend to us as parents. Listen if we need to talk. Hug if we need a hug and don't want to talk at all. Sit with us in our moments of frustration and our moments of great pride. 

FROM J : Ask. Asking how things are going, what techniques help out little ones feel better, and how they can bring a smile to their faces really goes a long with establishing a relationship with our children, which needs to be there for any sort of relationship to be maintained.

Accept, accept, accept. In our household we accept Simon for who he is at his core - all of him. He is amazing. We are not actively working to change him - we are actively working to make him the best version of himself (just the same as we do with all our kids). We have no idea what the future looks like for him and we live in that limbo every day. Think before you speak and then speak words of loving kindness and acceptance. 

Love, love, love. Unconditional love. For the person. For the family. What does this look like? Begin with the assumption that the parents are parenting the best they can with what they have in front of them right now. Love looks like the suggestions I made above about embracing and accepting and supporting and inviting and showing up. 

And from my friend Christina who is very eloquent about these issues and is the parent of one of Simon's friends: I would say that it matters the most when someone engages with me about my child with authentic inquiry. Listening and assuming that I am doing my best. Avoid negating the experiences and perspectives parents bring and don't minimalize the diagnosis or symptoms by claiming a quick fix that is based on exerting power on my child. Recognize that your experience as a parent is not mine, nor will it ever be. Don't treat me like a hero or a martyr for advocating for my child, simply listen and ask if I need help. Take time to listen to a script about Sponge Bob, or cars, or some revelation the child has uncovered that seems so ordinary, but is truly extraordinary. Love that child.

Looking for other ways to support and show love? This was a good post: 10 Things You Can Do To Help An Autism Family

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47 thoughts

  1. sparkle says…

    Thank you for allowing us to watch your kids grow up through your lens. At times, we've seen them eating breakfast, going to events, interacting with friends and quietly playing in their rooms. Seldom do we have an opportunity to see what a family looks like in their day to day lives. We've been allowed to 'get to know' both of your amazing kids through the years and I have fallen in love with who they are through pictures and posts. We have had the privilege to watch the struggles, the victories, and the JOY. You're an amazing Mom Ali, to two incredible kids and to the three that God has added to your life in the past few years. They are blessed to have you, and you are blessed to have them. Sharon

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  2. pierek14 says…

    Thank you for sharing this post. I have watched Simon become an amazing young man through these posts, I have cheered for him on his accomplishments and quietly thought "Go Simon Go" when other obstacles were a challenge for him. We as parents always want to teach our children but what is truly enlightening is what they teach each of us. God Bless you and your family Ali and "Go Simon Go"!

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  3. PaulaPerk says…

    Great article, Ali. I would love to print it out and give to my family. As an aunt to an amazing 22 year old, autistic young man, my heart was so full when I read it. My nephew is funny and he loves comics and video games and going to Comic Con. My sister did a great job with him (and as a single mom). There were a lot of bumps and bullying at school and fighting for him to receive additional help and even within our own family he is not as accepted or understood as I would like. The best message for me is the acceptance of WHO is is. He doesn't have to be "like everyone else". He is the best nephew- I wouldn't change him.

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  4. CasieGutierrez says…

    thank you! Thank you for offering these simple words to help us remember that all people at their core are human beings and want to be loved, accepted and treated kindly!
    I love this line about Simon "seriously going to the movies with Simon is the best because his enthusiasm for stories in unsurpassed"! It is great to see through the lens of a child as their excitement is contagious to us "older" people who sometimes are in a fog of our own heads and miss the everyday joys!
    I love seeing the #goSimonGo on IG and hearing about all his joys and interests. You are doing amazing work as a parent Ali and helping us all embrace the story we are currently living!
    Casie Gutierrez

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  5. mugsie says…

    Oh how I wish I could share this with everyone! It resonates so deeply in so many situations as a parent. I don't have a child with challenges per say, but I do have two very head strong, difficult girls who I love so much but who have challenged me in ways I had no Idea I could ever be. Like non stop tantrums in public and awful awful scratch attacks on anyone who comes in my youngest's path (for what seems like an eternity, it is starting to improve TG!) My oldest is now 5 and has definetly come leaps and strides and now helps me with the youngest but I never have a had a break from this behaviour in 4 years haha! It's made me go from being very social and outgoing to extremely scared to go anywhere and do anything. Even when I don't take my kids! The fear of how people react and comment is there. I guess you could say I've developed anxiety haha! Parent anxiety? If that's a thing. There's so much Judging out in this big world, I hope everyone could follow these great suggestions a little more xoxo

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  6. dpowersfabian says…

    As well as being a parent of a 28 year old son with profound autism, I'm also a social worker in pediatric palliative care helping families of children with chronic and complex disabilities. I present on the topic of Chronic Sorrow (theoretical grief model first presented by Olshansky with recent research done by Susan Roos) and the experience of parents of children with disabilities (along with other losses, such as a spouse with Alzheimer's or a self-loss e.g. Christopher Reeves spinal cord injury). We celebrate our children! But there are times when our pain can be as acute as 106 degree fever as we watch their struggle.

    Reply 1 Reply
    1. AliEdwards says…

      I'm going to have to research "chronic sorrow."

  7. Dawnk104 says…

    I didn't think that I could love you more, but I do after this post! Thank you for putting into words what I feel and think. Great post.

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  8. heatherlyle says…

    Thank you Ali for this incredible post. It spoke to me in so many facets-working in pediatrics, as a friend and most importantly as a mother...My son has sensory processing disorder... all you want for any child is to be accepted and loved as the amazing person they are, to not be treated differently or excluded. I still struggle with that as a parent, brushing off the judgement. I wish they could see what I see. I wept with joy just this week over my son having a great day "a perfect day". So simple, so honest. Celebrate the wins and share in the battles...
    Again thank you for sharing this post Ali. You and your son are truly an inspiration!

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  9. EricaG0204 says…

    Dear Ali,
    Like so many others, I have been following your journey and remember finding hope in the early days of our own diagnosis by reading about Simon and his many successes. This post is so timely as we are now into the groove of the new school year and there comes a time where we all could use these reminders. The reminders that we need to be kinder to ourselves during those really challenging times and to remind others that above anything else, our children with special needs/special needs children deserve love, kindness and acceptance just like everyone else. Thank you for continuing to share your journey and empowering many of us to do the same.

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  10. katie1980 says…

    The odd part of all of this, is that the advice given here applies to everyone, everywhere. I always think this of you, Ali, you have such universal application!
    Obviously, it is more important to apply these requirements to kids and families who are "different" in some way, as it can be the natural instinct of people to avoid what they do not understand, but even just the shy kids (as an example) need inclusion. Great post, great message. I do try to be as inclusive as I can, and I liked the advice about saying hi even if you don't think they will respond. I attend a craft club on a Thursday evening and one of the organisers brings her sister along who had autism. Lucy basically does not speak at all while there (though I believe she is more vocal at home) but I always try to say hi, and include her in my comments. Last week I commented that she had a pretty shirt on - just as I would with any of the others. I am pretty sure that it is all taken in the manner which I intend it. (I also don't go out of my way to make a fuss - literally I include her and speak to her as I do anyone else!)

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  11. RuralVixen5 says…

    As always your approach and sharing is so appreciated.

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