So, I got this letter. It's from a woman who is clearly the kind of awesome friend that anyone would cherish. Here's part of the letter:
Dear stark. raving. mad. mommy.,
My preschooler has a playmate who was recently diagnosed with autism. I know I don’t have to tell you about the trials that my kids’ friend and the friend’s parents and siblings will experience in the coming months and years. I am curious, though, how can we be better friends to them? I feel a little helpless sometimes. I can see the mom struggle, and I stupidly ask, “How can I help?” There has to be something more I can do to help this awesome woman who has awesome kids.
I am sure my mom friend receives tons of unsolicited advice on how to “treat” her kid’s condition, and I certainly don’t want to add my two cents there. I just want to be someone she can depend on to call if she needs to vent, to watch one or both of her kids in a pinch, or to just be the mom of a constant companion in her child’s life. Help!
Many thanks,
M.I know, right? Don't you already want to be friends with her? I totally do.
I wrote back to her with some suggestions, but I'd love to hear your thoughts. If you're a special needs parent, what are some of the things that make your friends so awesome? If you're friends with a parent of a special needs child, what advice would you offer?
My ideas are below. Please, please, please, add your ideas in the comments.
How to Be a Good Friend to a Special Needs Parent
- Offer to babysit. While I certainly don't expect my friends to constantly provide me with free childcare, I am immensely grateful for a break once in a while. If your friend has more than one child that she has to schlep to therapy appointments for just one kid, offer to watch the neurotypical child so that she can focus on the appointment. Or offer to babysit the autistic child so she can have one-on-one time with one of her other children. Or offer to babysit both so she and her husband can go out to lunch. Or so she can get a hair cut, or take a nap, or stare at the wall for an hour. I am stretched ten ways to Sunday and there is just not enough of me to go around. I need help.
- Suggest our families do something together. Our family is kind of a production. Our kids are very well behaved, but let's face it: one of my daughters has ADHD and other "quirks," two of our daughters have severe anxiety, and our five-year-old son is emotionally 36 months old and still in Pull-Ups. And then this summer I had these thyroid problems. I get it. It's always "something" with us, and frankly, it turns out that not everyone is emotionally equipped to deal with our family. Let's just say we're not invited over for dinner very often.
| "Um, we know how busy you always are. And we figured you wouldn't have a good time, anyway, what with ... you know, your kids." |
- Be flexible. My friends are amazingly understanding that sometimes playdates are cut short (or canceled) due to unforeseen meltdowns. I already feel stressed and frazzled and like kind of a jackass when that happens, so it's awesome when my friends act like it's no big deal.
- Be open to just listening. Sometimes I just need to vent. Okay, a lot of times I need to vent.
- Advice ... it's all in how you present it. It really is okay to make suggestions and share your expertise. I happen to be fortunate enough to have friends who are teachers, or counselors, or just experienced parents. I am totally into hearing "I don't know if this will work for you, but what has worked for us is ..." Yes, I think we've tried everything. But there's the chance that you've got some gem of a piece of advice that I don't know about. While I'm not thrilled to be told I should do, I always love hearing your thoughts on what I could do. Plus, sometimes I'm so close to my own situation that I can't see the forest for the trees; I start attributing everything to Little Dude's autism, that I forget that sometimes he just gets a cold. So when you say, "have you taken his temperature?" it helps me. Thanks for being my reality check.
- Tell me I'm doing a good job. As I mentioned in my post Top Ten Things You Should (and Shouldn't) Say to the Parent of an Autistic Child, we can't hear enough of "wow, you're really on top of things for your kids. It must be hard, but it seems like you're doing a really good job." Other things we like to hear include "your love for your kids really shows," "it's awesome that you're such a good advocate for your child," and "here, have this big glass of wine."
- Ask me for help. Please don't think that I'm too busy to be a good friend to you. I still want to hear about what's going on in your life. I can still watch your kids, bring you ginger ale when you're sick, drive your daughter to Girl Scouts, and listen to you vent about the stress in your life.

Wow, why can't there be more of her in the world? I've had enough "he's not autistic, you just need to be more firm with him" to last me a lifetime thankyouverymuch. I think you did a great job with your list to her. I wish I could think of something great to add but my brain doesn't fire on all cylindars anymore. Thank you for posting this and THANK YOU to that special mom who cares about her friend and her special kid :)
ReplyDeleteI love the suggestion to do something together. I'm a foster parent and have a couple of special needs kids. We rarely get invited to go anywhere or do anything. Are people scared of us or what? If you invite me and my clan over to dinner, I'm not expecting you to care for my kids or watch them. I'll still do that but I'd sure enjoy some adult conversation. Thanks for writing this and cudos to this lady for noticing a need and looking for a way to fill it.
ReplyDeleteI LOVE your suggestions. I would love someone to ask "I am headed to the store, is there anything I can pick up for you since I am headed there anyway". It is amazing how much stress that would relieve to not have to load up the kids into the van and then get them out at the store. I like shopping but people at the grocery store almost seem more impatient than other areas and then dealing with my son and his wheelchair we seem to take a bit more time, especially if it is only for a thing or two.
ReplyDeleteyour post wont let me log in with Goggle or snything UGH:
ReplyDeleteMuch Needed Advice to the Masses for sure. I felt so lonely this summer and felt so bad for the boys with our lack of "invites" places. Thanks for a great and much needed post
Amy @LLA_Princess www.notarealprincess.blogspot.com
Thank you so much for posting! I hope knowing all these great bits of wisdom that someday I can be an awesome "friend" to someone that may need it!!
ReplyDeleteI personally try not to share the diagnosis, because I hate the 'pity' look. My son's autism causes problems, but these problems aren't insurmountable. I'd appreciate an attitude of problem-solving, the kind other moms would have with a fussy baby. If a baby is crying, most other moms wouldn't give the pity look and step away disdainfully. So my almost 4 year old is crying - there's almost always a solution.
ReplyDeleteI'd also say to police your child - the idea that parents shouldn't step in so that kids learn to solve their own problems doesn't work with my kid. If your or my kid is antagonizing the other on purpose, I'll step in!
I love you! And her! This post (almost) brought me to tears. I do not have a special needs child (almost the opposite, truth be told) but I do have friends with kids that are. I also have a couple of adult friends with major anxiety issues.(I guess what would be considered a sort of adult special needs)
ReplyDeleteMy main piece of advice is JUST BE THERE!! A lot of times, parents just need to unload or use your shoulder or just talk - sometimes they work things out for themselves by just having a sounding board.
Oh, I love it. I think you said it all perfectly. Lord do we need friends and really we don't need much from them. Kudos to that mama for asking.
ReplyDeleteI would add that she should work hard to encourage the boys' friendship as they grow. My most supportive and best mommy friends are those that continued to suggest that their child invite mine over for play dates after they got to an age where my son's differences were more obvious. They are always willing to give him a little extra support when needed and to also treat him just like everyone else the rest of the time.
ReplyDeleteI love this post! Almost all my friends (or I thought were my friends) left me after my son came along. I have had no one who will take my son for a little while and it is exhausting to never have a break. I have one new friend who is wonderful and she will invite him over for play dates with her child and invite us out for dinner as family outings and it is so refreshing! I guess people are just scared to deal with an autistic child or they don't understand that he takes up alot of my time but I am very lonely without friends to talk to so this is a great reminder of how to be a good friend to a special needs mommy!
ReplyDeleteI don't really have any friends that I do things with. I'm single parenting 3 kids including my 3 year old daughter who has autism and epilepsy. I pretty much CAN'T get out alone. It would be awesome if more people wanted to do something with kids included.
ReplyDeleteGreat post, awesome ideas and I LOVE LOVE LOVE your un-invitation graphic. You always crack my up even when writing about a heart breaking situation.
ReplyDeleteI agree with Jeanne. Just being there is really important. I had a lot of friends that didn't know what to say or how to relate, so they just stopped calling. Sad to say, but my child's diagnosis changed the dynamics of a lot of my friendships.
ReplyDeleteI love all of these suggestions. I would gladly share them with any of my friends....well except for 1. I adore this woman. We've been friends for such a long time and genuinely enjoy each other's company, but it is so very hard to get together and do something with her because her 2 young NT children are sooooo very needy and all over the place, that they send my head spinning and my youngest ASD son usually checks out to his mental happy place then they are around. I feel terribly for feeling this way because she does ALL of the things that you suggested. She invites us places all of the time, but they're usually at the last minute and well, we're not real good with last minute. She's always understanding, but I feel terribly because it really gets down to the fact that her kids are parented in a way that enables them to be wild and I have tactfully told her that they send my little one into a tizzy, so it's hard, but I think it may be my own sensory issues that can't handle them.
ReplyDeleteAs a parent of a special needs child (beautiful 2 yr. old deaf daughter), my best advice is to follow my cues when reacting to things associated with her special needs. If I'm totally comfortable, or even excited when I'm telling you about something, be excited too. I don't like when people offer me or my daughter pity over something we are very at peace with.
ReplyDeleteI love this list! I would add: ask me, the mom, out without kids. I work full-time, have two kids, with one with special needs. If I'm not at work, a doctor's office, therapy, or the hospital, I'm passed out at home. But, if a friend would invite me out every once in a while, I could make time for me as well. I'd love coffee and talking to someone other than doctors, therapists, preschoolers, and co-workers. But if you ask about my daughter, please don't cringe if I tell you the truth because really, I usually keep it nice.
ReplyDeleteFor the record, I'd like to note that your suggestions work for any parent. Please don't think that just because my kid doesn't have a diagnosis doesn't mean I don't need a big glass of wine and an afternoon to stare at a wall. One of the best things my husband was find another couple willing to swap kids ever other week so we all had a chance to go out as adults and not have to worry about a sitter.
ReplyDeletethis is wonderful advice on how to be a friend, full stop. thanks to both her and you on being a wonderful human being. :)
ReplyDeleteencourage kids' friendship with each other. Let me know that you LIKE my child. That helps a lot. To just know that others see how great he is - and not just the other parts...
ReplyDeleteThe best advice would be to simply operate from the assumption that the parents are doing a great job. That alone would go so far in a world full of folks who "don't believe" in various disorders and chalk it all up to "poor parenting". Insert here 10 pages of rant.
ReplyDeleteGreat post! alot of times people feel uncomfortable or do not know what to say when it comes to having a friend with a special needs child. As a mother of a pretty moderately disabled child I have a few things that over the years I could say and here they are
ReplyDelete#1 Do not tell me all the time that you feel bad complaining about things going on in your life because my life is so much worse and you could not imagine being me... The truth is sometimes I like hearing about other peoples lives it keeps my mind off my own problems and also hearing that you think my life is so hard and tragic makes me want to cry!
#2 Do not tell me that "I could never do what you do I guess god just gives us what we can handle" The truth is most parents love thier kids enough to do whatever it takes to care for them special needs or not! I don't think I received a child with CP because I was better equipped than the next person it is just how things happened and I love my daughter with all my heart special needs or not!
#3 When someone has a child born with a special need or gets recently diagnosed with something like CP, autism, or a developmental disorder ect... and you have a child that is the same age that is normal developing do not bombard your friend constantly with how smart, awesome, above average in development your child is non stop. Yes we are happy for you and we love your child but if that is all you can talk about it may make us feel bad because our child probably is not developing at the same rate. It is fine to tell us once about an accomplishment but if that is all we hear from you it becomes a little heart breaking because as much as we do not like to admit it, there often times is the "what could have been thought" and sometimes when we are around normal developing children or that is all we hear about from our friendswe are reminded of that.
#4 Do not take pity on me! I love my daughter so much even though she is 8 and can not communicate and I still have to change her diaper. The truth is I am just overjoyed that she is alive so be overjoyed with me :)
#5 Teach your children compassion, my friends have been awesome about this however, I have many times run into people in the community that do not do this and their chidren or they themselves make a rude comments... Your child may make a rude comment or stare they are kids that is what kids do but it is your job as a parent to nip that in the bud do not ignore it out of embarassment!
Offer to babysit is huge. Send her for a massage and pedicure when you can tell things are harder than usual. Be willing to listen without offering advice, unless she asks for it. If she just wants to rant and cry for a bit, let her.
ReplyDeleteFor me, my home is the one place I can control the variables well enough. So I like to have others over here as much as possible. This is not an imposition on me. It is not "extra work". It is FAR easier. So if I keep inviting you over and you keep suggesting the park because "it's easier" for me? No. I promise, having 3 extras in my house is easier for me than taking my 2 boys under 6 with autism to the park.
ReplyDeleteAll of these ideas are great. I LOVE this post. I would add: Learn about the child's diagnosis and treatments. None of my friends know what Asperger Syndrome is, or why we use a gluten/casein-free diet, and it would mean a lot to me if someone took the time to read a book or an article about it. I would also add, don't take offense or freak out when my child has one of his moments. One of the best things to ever happen to me after I dealt with a major meltdown from my son in a waiting room was to have two of the parents witnessing it say, "Wow! You were awesome handling that!"
ReplyDeleteLove. Love. Also love the list of 10 things to say/not say. They "they'll be fine, right?" makes me feel homicidal every time (our son has big heart issues and developmental delays as a result).
ReplyDeleteOMG. What an amazing person for even asking this question. I so totally want to be her friend...and I think all of us on here adore SRMM. And the "not invitation" is priceless--I SO totally feel that, esp. the happy pictures posted on FB after the event that you weren't invited to. People can be cruel...hopefully they just have no idea and don't realize (but seriously, how could they not?).
ReplyDeleteWe have had old friends who we once were so close to they were practically family 'drift away' since our son's Asperger's diagnosis, and it is painful. Esp. since they're still super-close with my brother, mother, and mutual friends. All I can do there is try to thicken my skin and not let it get to me, although every now and again (those cheery damn FB posts!) it really breaks my heart.
But we have other old friends who continue to love us and our kids--the 'special' and NT one--just b/c they love us, and our son's diagnosis doesn't have to change that. I've also had casual acquaintances become friends b/c they've reached out to me, and have helped connect me with other parents in our local special-needs community, which has been SO helpful. And I keep reaching out to make newer, better friends (than the ones who avoid us); they often have a special kiddo of their own, or at least have a cousin, nephew, or neighbor with Asperger's, so they're not 'weirded out' and treat us all like we're people. Which we are. And trust me, we sure do appreciate socializing with others...wouldn't you?
Thanks again, SRMM, for another brilliant post--I do believe you are saving me thousands in therapy and anti-depressants! (-; Cheers to you all!
My (few) friends always offer to babysit. I've got that covered. Ask me to go out for beers. Ask if i want to go dancing at a skanky club. Ask me to go to the mall to pass judgement on the fashion choices of strangers. Ask me anywhere that reminds me that i'm still human, still young, and still capable of being silly.
ReplyDeleteJust be a regular friend is the best advice I could give her. I love the idea of scheduling things to do together with families, because we all really need friends who are going to be cool with our kids going into sensory meltdown at a moment's notice. Then, we need that friend to bring us a Frodka (or my favorite, Skinny Girl Margarita) when the meltdown's over!
ReplyDeleteFantastic advice for anyone who is working to be a good friend to any parent! And these tips work great if you have a friend coping with other major life stressors (illness, etc) as well. Thanks for a great post.
ReplyDeleteI hate the label "special needs". My stepson battles autism, and sometimes the autism wins. Most of the time he is just himself.
ReplyDelete"Special Needs"? Yeah, YOUR kid has special needs. He/She needs to learn to be nice to people, and to imagine what life must be like for someone that nobody wants to be friends with because they're "different". She needs to learn not to judge or look weird at others. And He needs to learn to not be rude and make nasty remarks. Oh, and the woman sitting across the aisle - SHE has an extra special need to not make under-her-breath comments concerning situations that 1) aren't her business, and 2) she most likely knows nothing about.
New Quilter, you are so right.
ReplyDeleteMy son is himself, others interfere and then blame him when they don't understand and refuse to show any tolerance. I am fed up being on my guard all the time, there are very few people that I can 'be myself' with as the constant stress takes control. Those who are still my friends are valuable and precious to me.
As for friends, I have lost most of the few that I had, and don't have time to slow down enough to have a 'normal' relationship. Everyone has such busy lives and sometimes I feel like the world is spinning around me while I try to catch up. my son is most important, and as long as he is my friend I am complete.
For what it's worth we spent 24 hours with you and we think your kids are AWESOME!!! Of course we have a kid with anxiety and ADHD, a child on the spectrum and complex medical needs, plus a mom that's high functioning and a mom with ADD so our perception may be skewed. That being said, we all had a great time together!!
ReplyDeleteLove the suggestions. The offer to babysit is huge. Parents with a special need kid (or two) NEVER get to go out. Didn't I hear somewhere that we're twice as likely to divorce. Gee I wonder why.
Nothing to add; this is great advice. I am too old to hang out with young moms any more, but want to be aware of what's happening out in the world and figure out how to interface with new grandparents whose little ones may face special challenges. I figure they need support and a comforting ear too. Plus, I wouldn't mind being a substitute grandma to another's child, as I don't have any of my own (yet); it would be fun to practice.
ReplyDelete~physicsmom
I have to say. This is a phenomenal post. And I hope you don't mind me linking it in my blog. I wish I had friends like that...who would do all of those things.
ReplyDeleteOne thing that we do with our friends whose son has Aspergers is to be very selective about any other children we have over at the same time when he's having a playdate with out daughter. Some combinations are like oil and water, even though these kids have known each other all their lives. My daughter is fortunately one of those kids who does have compassion and really likes being with my friend's son - I'm extremely fond of him myself and I love it when they spend time together.
ReplyDeleteMy daughter also has ADHD and so I know the other side as well - what I'm dealing with right now is a LOT "Welllll, we all know ADHD is SO over-diagnosed, and the drugs they give them are STIMULANTS! Why would you give a hyper kid stimulants? Parents and doctors are just lazy and foisting diagnoses on their kids, etc. etc." Chah. Not so much. I am her mother, I have known my daughter her entire life and no, she is not NT. And no, it's not due to lazy parenting on my part or a desire to medicate her behavior away for my convenience. And we've not even started medication, this is what happens when I just bring up the subject!
Here is my piece of advice - when you offer to go out with her for drinks, have a playdate or whatever, and she says yes, *follow through*. You pick the time and place and make it happen. She has too much on her plate to play endless phone or email tag. Just arrange it and make it happen. Thanks for understanding!!!
So I am coming from a slightly different perspective. I do not have kids; but truly love kids. I have also been really close friends with a woman who has 4 kids; one with special needs. Things I have done that she has said she appreciates are the grocery runs (I am going to Costco, can I pick up anything for you?) Gone out with her and her two younger sons (one NT, one SN). She often struggles with getting both of them out of the house; especially for something non-required so we would often go together so we could do something fun. I have taken her son (SN)just the two of us to do something he really enjoys, so she could just be home. I've also just kept her company (running errands, working around the house) so she would have a friend and not just the kids with her. I think lastly I have sat for the two youngest (or just one or the other), so she and her husband could go out, she could take nap (always a necessity), spend time with the two oldest (college age), she could stare at the wall... she was really grateful for whatever I was able to do or offer. It doesn't have to be big or extravagant; I think often she was just as happy to have company running errands as she was to have a sitter.
ReplyDeleteYou sort of touched on this in your list of things not to say to parents of autistic kids, but this is the thing I hate the most. I'm telling someone about my daughter and they downplay everything, which makes me feel like I'm just pretending my daughter is autistic. By "reassuring" me that my kid is quite A bit like theirs, they just make me feel frustrated that I can't get my point across. That is part of the reason I love other special-needs moms so much. They just *listen* without trying to make you feel better or one-up you with their own stories.
ReplyDeleteAnd the other thing I would say is to encourage the friendship between the kids. Even If the friendship isn't perfect, there is something grounding about having a consistent friend. My ASD daughter and her ADHD best friend have been BFFs since they were a few months old. They don't always get along, or even play together at playdates. But they are always a constant in each others lives and that makes me feel like everything is okay even if it's not perfect.
And I think no matter what you do, you are already an exceptional friend.
Thank you for this post. I could have written this letter. As a new mom with many friends that are new moms, someday soon, one of us is going to face somethin.... anunexpected diagnosis or realization that one of our children may have a special need. I hope I would continue to be the friend I am today, caring, compassionate, helpful and open. My children will be taight to be the same way.
ReplyDeleteWhat I do struggle with is people I somewhat know that have a child with special needs. I met someone just the other day, I asked if they had chidlren and they told me that one of their children was autistic. What do I say........how do I show them compassion without making it sound like pity, how do I let them know that I sort of understand, basically how do I respond without saying something they are so tired of hearing???
I wish I had more friends like this.....the exclusion is so heartbreaking, for my special-needs kid and for me.
ReplyDeleteThis summer my high functioning (not Aspergers) son attended a Summer Camp with all NT kids. I went in the first morning D was attending and talked to the kids. I left index cards the week before so kids could write down questions so no one would be embarrassed asking a question. My 30 minutes ended being 1 hour with the most engaging discussion of autism I've ever had. D made new friends who made sure that even if he was different no one picked on him and he was always included, never left out!
ReplyDeleteJenn Fellrath, that is an awesome way to both advocate for your son AND educate his NT peers! Kudos!
ReplyDeleteExcellent! Her letter alone was enough to make me want to cry. Just knowing that there are people who want to be a friend is a huge first step.
ReplyDeleteWhile I do understand that people feel differently about it, I don't mind the term "special needs." My son is my special little guy. I don't like to throw the R-word around, but sometimes I feel like the Muggles are 'tards.
This is a great post. Thank you for helping the rest of the world understand where we're coming from. Sharing!
~ Chris, from the bungalow
Where's My Village?
I would love someone to say can I go to the store with you. With one child with ADHD and ODD and one who is autistic, and a third who has perpetual pms on steroids going to the store with only our two heads and four hands sometimes just isn't enough. Sometimes we just need an extra person, even if only to sit in the McDonald's with the kid or to help control the cart when a meltdown can't be avoided and the shopping still has to get done now.
ReplyDeleteAnonymous, I have 3 kids just like yours... a 10 yr old w/ ADHD & ODD, an 8 yr old w/ Asperger's & a 6 yr old who has 2 older role models to copy! In addition, my husband is deployed to Afghanistan. I'd give anything for my community to reach out to me, instead of give me the "what the heck is wrong with your kids" look. Sigh.....
ReplyDeleteMaybe it is not the "kids" that prevent you from being invited to a dinner party. Perhaps it is the parent who likes to use their children as an excuse for not being invited.
ReplyDeleteDear Anonymous,
ReplyDeleteI've considered that possibility. I bet I'd get tons more invites if I was an Internet troll.
Hope your day is full of sunshine and lollipops.
xoxo, SRMM
I'm a single parent of a child with Cerebral Palsy. And yeah, it would be nice to have friends. ANY. Just to have 15 minutes to go down the road to get coffee would be great. Wanna watch my kid for a sec? We were invited for a playdate at a classmate's house. Once. And haven't heard from them since. It kind of sucks sometimes. But I wouldn't change it for the world.
ReplyDelete