An Open Letter to You
From a Mama of Kids With Special Needs
Dear You,
Dear You, my friend,
Dear You, my neighbor,
Dear You who have kids without special needs… kids with just, you know, the usual slew of bottomless needs,
Dear You who are kids,
Dear You who were once kids,
Dear You,
I want to tell you about my son.
Just for a minute.
And about me and what it’s like for us who live full-time here in this world of kids who are different than normal, whatever normal is.
I want to tell you about my son.
My son who is beautiful.
My son who is sensitive.
My son who is compassionate, funny, and kind.
My son who loves Doritos the way some people love the sunrise or the rain on the roof or the majesty of the ocean, with a sense of awe and wonder and bliss.
My son who’s a total butt nugget and says GEEZ, MOM and WHATEVER and FINE and who also says I love you, Mom, and means it as fervently as he does the Geezes.
My son who experiences developmental delay, pronounced anxiety, and expressive and receptive language disorders — meaning he can neither speak nor understand speech as easily as others — and who lives, therefore, every minute of every day trapped inside his own brain, unable to communicate well; at once imprisoned and also more free than we’ll ever be because he hasn’t learned to hide himself the way we so often do.
Sometimes you ask me how my son is doing. You who know us well, and you who know us just a little. You ask because you care and because you’re curious, and I want you to know both are OK. I appreciate your kindness, and I understand your curiosity. It’s OK to want to know. It’s good to ask.
Sometimes I give you an answer. Sometimes I can’t find the words. When I do respond, it’s usually short.
How’s school going? you say. How’s Ian and how are you? And I don’t know what to tell you, because, even though you’ll listen to my whole answer — even though I believe you actually, really want to know — I don’t know how to access the complexity of my grief and my longing and my hope in order to find a whole answer to give.
My son is a child who will, on some level, always finish last when measured by the standards of success the worlds gives us. He will always be an outsider. Always be different. Never belong. And so we work to create the safe haven. The place of belonging. The soft place to land. The true meaning of family. Which, it turns out, is hard, because families are made out of humans and we’re fallible. Imperfect. Messed up. And we’re the ones he’s stuck with, poor kid.
It’s hard for my son to be different. He knows. He can tell. And it’s hard for me, too, because I grieve that which cannot be. The same life and opportunities the other kids have. The limitless potential to DO. I must wrestle with myself most days to remember my son has the limitless potential to BE. To be loved. To be valued. To bring joy. To be my son. To be enough as he already is.
Grief and hope make for awkward companions. Awkward lovers, never quite sure where to put their hands. Always bumping teeth. And yet, because the grief abides, I work to make room for hope, for without hope we are lost at sea, adrift and alone.
While I’ve learned to live inside this new reality — while I’ve learned to look for hope and to cheer victories of every size and to regroup when we’re forced to fall back — I have neither “gotten over” nor “come to terms with” my son’s disabilities like I expected I would by now. Instead, I’ve learned there are new phases of grief. New sorrows. New things he can’t now and will never do. New realities that are mine with every new age of his.
So you ask how he is. How I am. And I want to answer you. I do. I want to champion my son. I want to spread awareness. I want to hand you my heart. But I don’t know how.
I stick with facts for my longer answers. School’s going well, I say. Or, He got to play a sport this year! First time he’s played a season. I might even tell you, The counselor is AWESOME — she is, it’s true — or say, The medication is really making a difference, and I mean that, too. Even though medication isn’t right for everyone, I wish we’d given him that relief earlier.
But I more often give you a chipper Fine! or a cheerful Good! or, when I’m overwhelmed and can’t muster my optimism, an Ugh! or a Pfftt! or Well, it’s hard right now, but we’ll figure it out.
And there’s a whole world of things I don’t say.
About what it feels like when it’s dark outside and I wonder about his future.
About how hard it is to tell him again, day after day, sometimes hour by hour, that I don’t understand what he just said and I need him to say it again.
I don’t tell you he didn’t sleep through a single night for the first 11 years we had him.
I don’t tell you about the panic attacks that leave him flailing and breathless.
I don’t tell you what it’s like to hear the sounds of my son crying in his sleep and to revisit what his first 3 years must have been like, abandoned and alone.
I don’t tell you about the guilt I carry for not being with him, even though there’s nothing I could have done to change his early life.
I don’t tell you about the family vacations, for which we try to be grateful, which are raw and agonizing because he is outside his routine and his safety net and therefore bewildered and afraid.
I don’t tell you about the ways my body tenses when he bursts into our room in the middle of the night and the door bounces off the wall while he yells, “DAD? MOM?” because he needs to make sure we’re still there.
I don’t tell you how fragile he is. Or how fragile I am. Or how much I’m afraid we’ll all break.
Instead, I give you an answer, a Fine! or a Good!, and it’s a true one, but it’s also incomplete because my brain is short-circuiting. Stuttering. Blanking. There’s just too much to say, and I don’t know where to jump in.
When Ian was three (and four and five and six and probably seven), he used to throw himself on the ground and play dead whenever he felt overwhelmed by the world around him. I took this picture of him at age three, in the airport in Guatemala City, just after we adopted him, when we were bringing him home for the first time.
Frankly, I think it’s a pretty good strategy. Very effective.
It’s also an excellent visual aid for the route my brain travels when you ask us how we are. How are we? We’re… good… we’re… fine… fizzle, fizzle, kerthunk… PLAY DEAD.
And so I take this long route to tell you this: I’m a mama of kids with special needs. I’m hopeful and I grieve. And I need you, my friends, rather desperately, even when I don’t know what to say.
I need you to keep me on the side of hope.
I need you to whisper in the dark that it’s going to be OK.
I need you to keep asking how we are, even though my answers are pathetic.
And I need you to know I remember every kind thing you say to me about my kid. Every compliment. Every ounce of compassion. Every time you try to include him in your games and in your parties. Every time you inconvenience yourself to bring us in.
For every kindness to my child, to my family and to me, I’m nearly unbearably grateful. And I’ll ask you to please, keep being gentle with us.
Yours Truly,
A Mama of Kids With Special Needs
51 responses to “An Open Letter to You From a Mama of Kids With Special Needs”
My kids are starting their 3rd year of school since joining our family. My kid with behavior issues, who was learning very slowly and getting in minor trouble frequently, major trouble occasionally, has been suspended 3 times already this year. He is causing complete chaos in his classroom on a daily basis and is not able to function enough to learn at all. My people pleaser, who adored kindergarten and 1st grade, wept at bedtime last night. “I want to be homeschooled. I don’t have any friends at school.” People cheerfully, off-handedly ask, “How are the kids doing?” and I reply as expected, “Oh, fine, overall…” I just–I can’t–gah.
This post obviously hit a chord with many of us. You express it so well. Thank you. It helps to acknowledge it, and it helps to know others understand.
It’s seems like perfection to me that your wondrous boy should have such a beautifully and powerfully, receptive and expressive women as a mom. That your words may be his and his heart be your own.
Thank you for this Beth.
It’s funny that even though I have 2 kids with some “special needs” and am often overcome with extreme gratitude for the people who go the extra mile to really see them or inlcude them or help them, I often forget that I can do that for someone else’s child.
Thanks for reminding me to look for opportunities to say kind things about other children and to include them and help them however I can.
Can I just say too, I feel your pain on the anxiety. I have one with severe generalized anxiety disorder and one who I’m not going to bother getting diagnosed for a while because then I’ll have two kids with that which seems like too much. It is so freaking hard and it affects every aspect of their lives and makes simple things like getting ready for bed or leaving the house hysterical drama fests. The worst part is the friend damage though. It is so hard to be different in any way and still have friends at school. My daughter’s anxiety oozes out of her in a hundred different ways even when she’s exhausting herself trying to hide it. That makes her different and different is not good in school. I just long for kids to see how awesome she is AND how much she is struggling with just being in the world. And please could the mean girl stop getting put in the same class with her!
And why can’t they develop an actual anxiety med you can give to a kid who weighs less than 60 lbs! We are in theory against psychotropic drugs for kids and their developing brains AND YET completely desperate for a drug that would take the anxiety away versus slightly mitigating it the way antidepressants do which is all we are ever offered when the therapy just isn’t enough.
Beth, I can’t even imagine the frustration that anxiety coupled with difficulty expressing yourself would produce. You have my utmost respect for soldiering on with such humor and grace. Without even meeting him, I know your son must be incredibly brave to go out and face the world every day. Clearly your home is filled with the most courageous people!
I needed this desperately Beth!!! My son began having seizures at age 3 and is now 5. We have just recently been given a very complicated diagnosis after 2 years of searching for answers. Basically my tiny warrior is going to fight a battle over the next 10-15 years until these seizures subside to keep his intelligence and ability to speak. We have already witnessed regression but this disorder promises greater regression during this “acute” stage from ages 5-15. The hardest part of my day is going to work as a busy hairstylist and having 8 clients each day sit in my chair and ask “How’s Peyton?” And some days I have it all together and give amazing answers and some days he’s woken up with few words and a seizure and then when that question comes I’d like to accidentally cut my clients hair a bit too short or possibly stab them in the ear with my shears when they tell me their “chihuahua has seizures” so they “know what I’m going through”.
As a mama who just found out her son is “special needs,” I’m sending a million smiles and squeezes out of the dark and into the dark. xoxoxoxoxoxoxo
I have a “friend,” you know the one? The one who always manages to ask that question that burns straight to the heart of his disability? “Does he have any friends?” Every. Single. Time. NO! OK!? No he doesn’t have any friends, not really. There, are you happy now? GAH!!!!! I’m sure that makes you feel better about your rotten daughter who is out partying every night, using drugs and alcohol and God knows what else at age 14. But wow, she does have friends! Sorry–I sound bitter and angry, don’t I? I know we all have our issues and obviously this person in my life is a Narcisist or Borderline or something else but boy does this upset me…
But thank you for this wonderful post, us moms of kids with special needs sure do understand how you feel, and we also know something the rest of the moms don’t know: the future is unknown. This is a terrifying reality that special needs moms learn as soon as they get a diagnosis. We meet hope and terror so much earlier than everyone else. But guess what? Those other moms only THINK they know their child’s future. They look at their child and they imagine a trajectory, but so many things can happen to change that because the future is unknown. Life is fragile and unpredictable and sometimes a matter of chance. So in some ways we’re the lucky ones–we know that we don’t know. And, btw, my son with Asperger’s Syndrome, who had a para-professional in class with him all the way through school, who yes had the vacation problems, who no doesn’t really have friends, who yes would prefer to isolate and do things on the computer, is now a freshman at University of Alabama, living in an Honors dorm and making it work! (So far, which of course as a special needs mom I know is subject to change at any moment) Anyway, hang in there–I’m with you!
Jenn, I was just given this link and I think it’s wonderful! I have one daughter undiagnosed until out of school and the whole “friend” thing was HORRIBLE!! Especially because she had a sister 3 years younger who was Miss Butterfly.
But this site is written by two Aspies and if nothing else, it offered hope to me. Hope you find it helpful.
The other thing I’ve found with my 2 youngest Aspies–the majority of their friends are much older than them–and they are friends because of interests, not age.
Thank you from the cockles of my heart for this. My boyfriend’s son has lived with me for two years and shares a percentage of what your son is going through having been abandoned by his mom, and not given any kind of parenting or educational stimulation until well past 5yo. He has severe anxiety, learning disabilities, he can’t form words easily, and can’t focus for more than a few minutes, and his short term memory is nonexistent…and it’s hard. It’s just hard. I have two kids that are pretty-amazing-straight-A-hitting-the-ground-running kind of kids and I am really struggling to understand him and what his world is. I’m struggling to find the patience to go over something for the 15th time and answer the same question that I’ve already answered for the 1000th time. Add in boyfriend’s 10yo who is learning impaired and has severe anger issues and his 4yo who had 3 strokes during a blood transfusion at birth so we’re still trying to figure out ways to work with him….it’s just a lot. A big hairy overwhelming lot. I really just meant to write and say thanks. Thanks for not pretending everything is ok all the time. Your blog has been my laugh on so many nights where I REALLY needed a laugh and a wave in the dark. Much thanks and eternal gratitude.
<3 …."and to find a whole answer to give". Of course with tears and hugs, sending you love. I don't think I've ever found a whole answer to give, for my grief, and hope, and how I'm REALLY doing. And in the midst of my current situation, the current struggle, where I've begun to hide from the world, because I can't bare to try to put words to my feelings, yet can't stomach acting like it's ok, you have given me hope. To know that I'm not alone in the complexity of it all. My heart grieves and rejoices with you. And thank you…. Again.
Thank you so much for sharing this! I woke up this morning and realized this was the first time in almost a year that my nine year old with an anxiety disorder slept in her room all night. She only woke me up twice. I am so excited and proud and hopeful. I want to tell my friends, but they won’t understand. Don’t all nine year olds sleep through the night in their own rooms? They certainly don’t wake up screaming and thrashing, unable to comfort themselves and calm down. So, I’ll tell you. You’ll get it. Thank you, thank you!
My Steven is 19. He has beautiful, incredibly bright blue eyes, a goofy grin, and a cackle you can’t help but join in on.
He also has Asperger’s, ADHD, learning disabilities, and a chiari malformation. The chiari malformation causes tremors that mean his handwriting is beyond abysmal. (And he’s left-handed to boot!) He’s in a post-secondary class at the high school, but we don’t think he will ever be able to live independently. I grieve for all the things that could have been–science projects, Homecoming, sports, the prom–and the things that probably never will–a good job, a home of his own, a wedding, a family. And then I hug my son, because he is my baby, my Stevie, and I love him beyond words just as he is.
I think the best we can do for our kids, no matter in which way they’re special, is to advocate for them and love them as hard as we can.
Some days the stress is so hard that all I can do is put one foot in front of the other, but keeping the “love them as hard as you can” credo in front of me ensures that I keep my children feeling as whole and as secure as they can in this life.
It’s the same love that I see all of you practicing, and it gives me hope that I’m on the right path.
This. All day long.
I love what you wrote and I hate it too (but in a good way…whatever that means?) because it’s just so true.
Grief and hope being awkward lovers is maybe the best, most true description ever.
Thank you for your honesty. It’s beautiful. It reaches out a hand in the dark to others. A hand so needed. So here I am, a special needs mum, reaching a hand back to you… Party tonight. My closet. I’ll bring the chips and salsa.
Oh, yes. And yes. And YES! We love Ian (and you and Greg) to the moon and back, and we should say that more often. He’s not just a special needs kid, he’s a special kid.
Thanks for sharing so honestly. I don’t have kids with special needs, but I do have a child with severe food allergies, so sometimes I feel like I have a child with special needs, except no one takes it seriously or really asks how we’re doing (except the other moms with kids with severe food allergies, but those of us who have to be super-anal and always on guard seem to be fewer than I thought). But the grief you describe sounds all too familiar to me. The ache I feel when he gets sad that he can’t sit with all his friends at lunch…when he once again has to be singled out as the kid who can’t join in unless he has his own food…when he doesn’t get invited over people’s houses because they’re too scared, even though it’s really not hard at all to have him over…when I think about junior high and high school and dating and all the food that’s everywhere, all the time…when I see the fear in his eyes in a social situation because everywhere he looks, people are eating things that could kill him…. And some days it’s not bad at all. And in our bubble at home, it’s usually pretty good. And other days the stress of trying to pretend everything’s cool when I just want to bubble wrap him and not do all the work to keep him safe and teach him to keep himself safe overwhelms me. And sometimes I overcompensate, and sometimes I freak out too much, and most of the time I question how to teach him that it’s not a big deal because it pales in comparison to what so many others face but it is a big deal because, well, he could die if we mess this up. So, waving to you in the dark as a mom who understands some of the grief mixed in the mom-love, even if not in the same way, and as a mom who sometimes rolls with it like super-mom and other times finds herself at a loss to know how to process it all.
Hi there, I love this letter.I don’t have kids in my house but I am a special education teacher, so I have kids in my classroom. I appreciate hearing what parents think/feel. I feel what you feel to a different degree of course, but I want the best for my students, rejoice when they have successes, light bulb moments, or a great social interaction! I also hurt when they have challenges and I realize what these challenges mean for their life outside of my resource room whether in gen ed, home life, or future. I also work in an area with many people with low income or rough family lives so I hear kids talk of it and it breaks my heart. But then there are kids who talk of great things happening at home or I talk to parents who are really dedicated to helping their kiddos and let us know what they know and we share things that help their kid and we work like a great team and I know these kids will be ok because they have parents who love them!
I apologize for the bad typos. I am on my phone and it doesnt tell me when a word is wrong. Thank you for this letter!
Thank you for your writing!
My son just turned ten, and has Down Syndrome. He’s super high functioning, which, of COURSE, is a blessing. I’m learning as he gets older that this comes at a cost, because he still HAS DS. There are still The Differences that make people stare, or exclude. While people are overwhelming sweet and kind and inclusive, when with him, they aren’t exactly beating down our door asking for playdates, like they do for our older, typical son. And because he’s high functioning, he notices. He cries. Big. Fat. Break-Your-Mama’s Heart Tears. The tough part is grieving the fact that I know that as he gets older, the infamous “Gap”, they refer to in the ARD meeting, just gets wider. This little rant sounds so depressing, because in the moment, Oh my…it is. But really, 99.99999% of life with this little man is all about hope.
Best thing ever written in all the writing in all the world.
Thank you.
I have two stepsons who are going blind, a 5-year-old with autism, and an almost- 3 -year-old who is just now starting to speak. I’m right there with you, waving in the dark.
So, I’m waving over here from across the country with hope in my heart that yes, everything will be okay and work out and or kids will make it through to the otherwise and that I’m receive some amazing grace in the process. Because I spent the afternoon AGAIN chastising my kids for not turning in work and being behind on their school work. Again. Every four weeks or sooner, and no amount of nagging or your homework is done and submitted online is working. And so I too answer “it’s hard” or “fine” when asked how things are with my kids because I just can’t go into it. I wish I could be a better cheerleader. But I’m holding your hand in the trenches.
Aunt B is Whispering “It’s going to be OK”
((((((Hugs))))))))))
I, too, am a momma of a kid with special needs and I just had to tell you how much I loved this. It’s so hard to put into words the emotions that accompany this road we’re on. “How are you?” Alive? Sort of? All I can do right now is cry because, yes, it’s difficult but also because just when I need it I’m reminded that I’m not alone. That my husband and I aren’t the only ones who get it. Thank you so much for writing this. I’m sure we’ll be waving at each other in the dark again soon.
Thank you for writing this. My daughter has some special needs of her own – not the same as your son’s but I love her the same and so your words felt like my thoughts even just a few minutes ago while I tried to explain how I feel pulled in different directions by people who know what is right for her. It’s their business. And since I have no idea, I try to jump on bandwagons going in opposite directions. And I am embarrassed by her having extra needs. And I am ashamed that I am embarrassed. And I hope she can forgive me someday for not knowing what to do, what the right thing is, ever.
I hope people continue to include your son and treat him kindly and that someday you live with peace that he doing ok and the confidence that it will stay that way. Because as long as he has a mama that loves him, it will be ok.
Thank you for this. As a mom with a special needs kid (and 4 other neurotypical ones… or at least as neurotypical as anyone with my and my husband’s genes can possibly be), I can’t even tell you how much I needed this tonight. Things are…rough right now on the Ezra front. I have his first official IEP meeting next Tuesday and I’m practically out of my mind with anxiety about it. It’s also his 9th birthday tomorrow and I’m reminded what a truly amazing kid he is.
IEPs are super scary, but it went better than I expected, both years I have been to one. Standing in solidarity and hoping for the best tomorrow, another mom with a special needs child.
Good Luck. I’ve been through six of them now, and they aren’t that bad. Just set the bar (reasonably) high, and know that more than likely, most, if not all of your kiddo’s educational team has his best interest at heart, so give the benefit of the doubt, and rest.
And bring snacks! Seriously, they help in multiple ways with long and stressful meetings.
http://bethwoolsey.com/2012/03/happy-i-e-p-day/