What This Special Needs Parent Wants You To Know

I regularly have conversations with fellow special needs parents; admittedly, mostly moms. A general grievance is our interactions—on a daily basis—with those who are not parents of special needs children. These seemingly innocuous interactions are anything but for us. They are fraught with anxiety, frustration, avoidance, defensiveness, exasperation and when all is said and done, we are often left defeated, depressed, and offended.

If you are a special needs (SN) parent, this piece will likely resonate with you. Perhaps not now, but at some time in the past. Mind you, I am writing through the lens of autism; however, parents of children with Down Syndrome, SMS, and other types of special needs have all expressed exasperation with these daily interactions and conversations with family (even close family), friends, colleagues, and total strangers.

For those of you who are not living this journey, please know first and foremost, we understand you are coming from a place of good-intentions; there is no disputing this. That being said, the following is a sampling of things we want you to understand:

Things people say to us… and what we wish we could say in return:

• “You must be so tired”: Why, yes… I am flipping exhausted!
• “You need a vacation”: A vacation?! Shooot… that sounds like a slice of heaven! … Assuming we can afford a vacation after our copayments for therapies, assessments, treatments, etc. on top of our other bills… Not to mention finding a place that won’t send my kid(s) into a tailspin 24 hours a day due to overstimulation/under-stimulation… AND finding a location/resort that can provide adequate respite for us to enjoy ourselves (i.e.: a kids club that is trained for SN children) so we don’t have to find/train/and pay for a third party to accompany us and/or stay at home with the kids during said vacation to provide us with a modicum of normalcy/much needed adult, alone time. Vacation, yep, no problem.
• “Do you have help?”: Perhaps more frustrating than hearing “Are you tired?” There is NEVER enough help. Especially QUALIFIED help. EVER.
  • Please, before you make this comment, consider this: Unless you are willing to get in the trenches and actually alleviate our constant need for help by asking us how you can learn strategies to work with our SN kid(s) so you can watch them for us—great!—we’re more than happy to show you a day in the life. If not, then please don’t ask us this question—we don’t need yet another reminder of how stretched thin we are.
• “Have you tried ______ ?”: Just as the aforementioned examples, we completely understand this question is coming from a good place but is likely the worst offender. If we say we have tried ___ therapy, diet, program, etcetera and it didn’t work for us, please don’t keep pressing for us to “try again” or perhaps “maybe [we] didn’t try it long enough” or that “a friend tried it and it has worked miracles on their kid” or “I saw this documentary…” We as parents of special needs kids are CONSTANTLY reading up on studies, researching the latest therapies, drugs, and programs available for our child’s issues. We are unofficial experts in our children. Especially when it comes to autism—EVERY child has different needs. While a particular therapy or approach may work for one of my kids, it’s not necessarily going to work for my other one. Please respect our knowledge and dedication to our children’s wellbeing. The same can be said if we have NOT tried a particular diet or therapy protocol. There is likely a reason.

Believe me, if we are interested in what you have to say about a particular therapy we’ve never heard of or are interested in learning more about it, you can bet we will bombard you with questions.

So, if you receive a sheepish or tight-lipped response to a “Have you tried _________?” question, please just move on. We don’t want to defend why we are or are not doing a particular thing. PLEASE.

Oh, and our kids won’t “grow out of it” and it’s not “just a phase.” Hearing these words, especially from family members, is so disheartening and frustrating. We want to be respectful; therefore, don’t tell you where to go and how to get there and instead talk to deaf ears about the many therapies and doctors and million other things we do that clearly state that this isn’t some trivial thing that’s going to magically disappear on its own with time, without intervention.

• “I don’t know how you do it?”/ “You’re a Saint”: Honestly, I don’t know how I do it either! I don’t think about it; my schedule doesn’t allow for heady introspection; I wake up and I hit the ground running. Will it be a “good day”? Likely not. Doesn’t matter, it’s going to be an uphill battle. I like to call my parenting style “triage parenting,” each day filled with minor and major battles in rapid succession, just trying to keep the fires out, passengers alive, and the ship afloat, if only barely. Don’t get me wrong, there are some good days… days where I feel that “I’ve got this!”, but most days it’s a struggle to just make it through to the end of the day. As far as being a “Saint” … we’re anything but. We lose our cool with our kids, as all parents do. We all from time to time in secret think about—or—discuss with our partner/spouse what life would be like without our SN child(ren) or if they were “normal.” Is that “Saintly”? Heavens no! But, it is human. And that doesn’t make us terrible people either. Do we feel guilty for even thinking this? Absolutely!

 

You say you want to help…

Aside from wishing every person near and dear to me to seek out training and miraculously clamoring to watch my children for a few days so my husband and I can get away (one can dream!), here’s how you can help:

• LISTEN! As you can see from the list of grievances above, we are absolutely inundated (from family, friends, total strangers!) with information about our kids’ needs.

What we want is for you to really hear us.

To listen and be supportive, not informative.

• Listen and heed our sometimes strange and perhaps mildly inconvenient requests.
  • Why don’t we come over for dinner at 8:00pm? Well, aside from the fact that the kids are already supposed to be in bed, letting them stay up late is not an option. Seriously. No, we can’t make an exception. No, we’re not being difficult—we’re saving ourselves from certain disaster the next day… and perhaps for several days thereafter, as kids with SN often require much more time to regulate all aspects of their lives (sleep, mood, eating… the slightest change makes a huge impact on their day-to-day wellbeing). When we request dinner be at 5:00, because we need to get them in bed by a certain time, please be understanding. Yes, eating dinner at 5:00pm may be slightly inconvenient for you, but when we hear you say, “How can we help?”, this is how you can help. Be flexible.
  • Going just about anywhere other than home is a disaster waiting to happen and is extremely anxiety inducing for parents with SN kids. Kids with SN, as mentioned, have regulating issues. They also have sensory issues (lights, sound, texture, etc.).
    

    They are often easily overwhelmed and “meltdown.” These are not what the average person would consider to be a normal “toddler-type meltdown” where a kid flops to the floor for a few minutes and then moves on. No. These meltdowns are scary and traumatizing for the child and parents. These meltdowns can last up to an hour (or more). These kids can be a danger to themselves (banging head on floor or other surface, for example) and to others (kicking and flailing uncontrollably) while having these meltdowns.

    Our kids have difficulty with impulse control. Just telling our kids, “No,” is laughable. Our kids will continually seek out something dangerous (pools/fire/sharp objects/unsafe environments) despite being aware of the risk and our continual efforts, be it verbal or physical, to keep the kids away from these dangers; they simply cannot control their urge to seek that thing out. (This also applies to non-dangerous items)

    While you may think inviting us out to the park is a lovely idea, I really and truly want to cry. I instantly think about how I am going to be on high alert the entire time, not have any time to spend (and most definitely will not be having any meaningful conversation/interaction) with the person inviting us as I will be too busy running after my kids the entire time. When a parent of a special needs kid declines an invitation or requests a venue change, this is why. Please be flexible and understanding.

**Side note: Restaurants are the worst for SN kids. Honestly and truly.

NEVER invite us (with the kids) to a restaurant. It will end badly.

• • I truly want to emphasize that as a parent of SN kids, I don’t want to be perceived as “difficult.” Things that are mildly inconvenient for most kids/people are beyond difficult for our kids.

We want our kids to “fit in” and live a “regular” life.

To do so, we have had to amend just about every aspect of our lives. 

We can’t just “pop-in” to someone’s house for dinner or for a playdate. Virtually every aspect of our lives is carefully orchestrated to make life easier for our SN kids. This is hard for us as parents and is very difficult for our NT (neurotypical, “regular”) kids. We want you to understand that we appreciate your invitations and ask for leniency and understanding when we cannot commit to an invitation or request an alternative. Again, we don’t want to be “difficult”—we’re trying to avoid a scene.

 

A huge key to helping us is understanding that our fears, anxiety, and isolation are ever-present and all-encompassing.

Will our child(ren) be happy as adults?

Are we doing enough for them?

Is what we are doing for them the right thing?

How can we afford this?

Are our sacrifices and struggles as special needs parents and siblings of special needs kids worth it?

Will our neurotypical kids resent us for the lifestyle we must live for their special needs sibling(s)?

The list is seemingly endless.

I wish we could go to public places without fear—fear of a meltdown, of elopement, or injury, or having to cut our time short at a party/gathering, or of people not understanding the sheer will and effort it takes for us to go virtually anywhere and constantly facing the questions previously mentioned. It is exhausting. It is isolating. So very isolating.

We self-impose isolation for the greater good of our special needs kids.

And this realization takes a toll. We have been given a parenting life so vastly different from what we envisioned or once had. We see our friends doing normal, day-to-day things… and we feel so many things… not always good things. We see people casually decide to have a “beach day,” or sitting with the other parents on the bench at the park—just chatting—as the kids play safely and (mostly) heed warnings from afar all while we try to manage our hidden panic attack as our SN kid attempts to jump in the fountain for the 1,000^th time or bolts for the street without rhyme or reason. Or seeing photos on Instagram and Facebook of an *amazing*/#blessed exotic family vacation where everyone is smiling and there may have been one small hiccup—likely extraneous, you know… the flight was delayed, or the room wasn’t ready as planned…but the kids “just rolled with the punches”—not a care in the world. We can’t help but be jaded and yes—jealous—at seeing the life juuuuust out of reach. It chips away at us. We so desperately want those simple, everyday interactions. And of course, we feel guilty for feeling this way. We honestly and truly WANT these happy, daily moments for our friends and family; that’s not the issue.

We just wish—for us—the day-to-day was just that, mundane and inconsequential.

Or, that a special trip would end up with that #blessed feeling, rather than being fraught with anxiety, exhaustive preventative planning, and let’s be real here, likely ending in disappointment and feeling utterly defeated. FOMO (fear of missing out) doesn’t apply us. There is no fear: we are missing out. We rarely see our friends. We can’t just meet up for drinks. A round of golf or getting a pedicure last minute— no way! This is our reality.

 

Another important sticking point is, for many of us, our kids “seem normal.” (Simply typing that phrase is repulsive and infuriating)

People perceive us as a family and/or our SN kids as “normal,” not knowing what’s going on in the background. The silent stares of disapproval and under-the-breath comments of, “Why can’t you control your kid?” are disgustingly frequent. This judgement, be it perceived or real; it doesn’t matter—is crippling at times.

Most days my I-don’t-give-a-shit-what-you-think armor is thick, but occasionally it gets cracked from the happenings of the day and these things get to me. And the problem with this is when it does, it goes deep. My anger at people being complete inconsiderate a-holes fills me with rage. My frustration with my kids for simply being who they are and behaving the way they do, fills me with guilt. SO MUCH GUILT. And desperation for wanting and wishing things to be easier—for everyone: for me, my husband, my SN kids, and my NT kid.

There are days when the act of crawling out of bed requires more will than I have to give, because I know my day will be filled with trying to watch my special needs kids struggle to perform “normal” tasks, of watching them struggle to navigate the “normal” world and having to face all the “normal” world throws at us… is… well… too much sometimes. Yet, I do. And I will. Because I have to. Because they deserve it. Because I love them.

I want to stress that this exposition is in no way seeking pity. We don’t want or need your pity. We need your support. We love our amazing children. Despite the lifestyle restrictions, these children bring us so much joy. The achievements they make are awe-inspiring. These children teach us to be patient, selfless, and flexible in ways “regular” children do not. These children are just as loving and fun as other children if you learn to speak their “language.” They want the same things as other children. And we want the same things for them.

Please help us meet that goal by listening, understanding, and being more flexible with us SN parents. Call us more often to see how we are doing. Find out what foods our kids can and will eat without a fuss and drop off meals from time to time. Stop by at random, because if you’re waiting for us to give you a good time to visit you or meet up with you… that may be never. We’ll really appreciate it. I promise.

I hope what I have shared will help your interactions with special needs families be easier and more approachable and have provided useful insight into our daily lives. Thank you so much for listening.

 

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Our Yearn for the Shallows

I know your open heart and your love. I know your exhaustion, your frustration, your fear, your constant second-guessing of whether you are doing too much or not enough, your financial struggles, your marriage struggles, your friendship struggles, and your generalized anxiety. I know your journey. Your journey is different from my journey, as each child is as unique as stones along a river. Yet, the journey is the same. Life, like a river, flows over each rock and affects it differently, but still flows the same direction regardless of time or season. Our kids are, more often than not, the rocks within the tumultuous rapids. Occasionally, we may find ourselves within the shallows, glimmering peacefully as the gentle eddies swirl above. However, we are not naïve to the fact that this calm is but a blip—a most amazing, needed, hard earned, and joyous blip—it is what it is: fleeting. We live our lives for these transitory moments. It’s what keeps us going. It’s our lifeblood. We want the same things for our kids. We want the calm and peaceful waters. I also know that deep love that radiates from your child when looking, hugging, or simply being near you. We are the same. We are different. I hope to bump into you in the shallows from time to time, but know we’ll keep fighting the current.