My Life As A Special Needs Parent Doesn’t Really Look Anything Like Kelle Hampton’s

First things first, let me say, I really do like Kelle Hampton.  I like her blog, Enjoying The Small Things and her book, “Bloom“.  I like her gorgeous stream on Instagram, with almost 40,000 followers.  Please note that for the record.  This post is not about not liking her, snarking on her, or anything like that.  This is just my experience, as a special needs parent who follows her.

While I love what she shares, somehow something has always felt a little off to me.  I couldn’t put my finger on it.  But it finally hit me – the life of a special needs parent that Kelle shares really looks nothing like my life as a special needs parent.  Or that of any other special needs parent I know.    Heck, it looks a lot better than most families with kids who do not have special needs.

Listening SystemInpatient TestingFrustrationHospital
Another thing to put down on record is that I am so deeply and completely grateful that our special needs kiddo is as healthy as she is.  Living in the special needs world, you so quickly realize that someone always has a harder journey, tougher challenges and a much more heartbreaking struggle.  It’s hard to complain about your stay in a children’s hospital for neurological testing when you see other parents who are pretty much living there, while their children fight cancer and other terrible diseases.  If anything, being a special needs parent often makes you even more grateful, because you get glimpses into journeys that make yours look like a waltz through a park.  A waltz through the park while raising funds and awareness for disabilities.  :)

Apraxia Walk

So the above disclaimers aside, I think what has been bothering me about the beautiful life that Kelle shares is that it is not the life of any special need parents I know.  And that is completely okay, except that I wonder if given her popularity, it is giving people a view, a picture, an idea of what life is like as a special needs parent, that is not really accurate for many.   If what Kelle shares is what someone thinks of as “special needs parenting”, they are, most likely, quite mistaken.

Every day Kelle posts beautiful photo after beautiful photo of her life and raising her children including her beautiful daughter Nella, who happens to have Down’s Syndrome (and may be one of the cutest children I have ever seen).  They are at the beach, they are in the woods, they are having play dates.  They are at dance classes, traveling, spending time with friends, family and neighbors, at the beach again, in the pool, on walks, on the hammock, having picnics and Kelle is having drinks, enjoying.   The kids are playing together, lovingly, cute as can be.    Friends are visiting, or they are visiting friends, who are loving on those kiddos like their own, helping out, being that village that it takes to raise a child.

The kids are wearing the cutest clothing, lots of stripes, and that “cute mismatched crazy style” that nobody seems to end up with by chance, looking perfect enough to be found in a catalog or magazine ad.   Kelle’s outfits, hair and makeup are simply stunning, sort of that bohemian breezy “I just threw this on”, but are clearly looks that take shopping, time and effort.  And she pulls them all off beautifully.   It is beautiful.  Kelle is beautiful.  Her family is beautiful.   Every bit of what Kelle shares, is lovely.   Kelle’s photos are almost like watching a vacation that never ends.  Gorgeous, soft, sweet, kind, full of love, magic and the perfect filtered natural light.

I won’t hesitate to say good for Kelle.  She clearly has a beautiful life,  beautiful children, an incredible support system of family and friends and appears to live in an amazing picturesque setting.  Rock on girlfriend, good. for. you.   Thank you for sharing it with so many of us, and letting us take a glimpse into your world that appears to be filled with magic.   I won’t lie, I think I could come live like that for a while.

So then, what’s the issue?   It just happens to look nothing like the life of any special needs families that I know.   In fact, it’s so far from it, it’s almost an existence I can’t even imagine.   Mine looks more like this

Special Needs Care Maps

So why does that matter?  Because I have to wonder if this is what Kelle’s readers or anyone who comes across her blog or book, thinks is an accurate representation of life in a special needs family.   I think Kelle’s blog is a beautiful mama blog.  I don’t necessarily feel that it’s a great representation of a special needs mom blog, though that is how it’s represented.  The Bump even named Enjoying The Small Things as the Best Special Needs Blog.

I don’t see (and maybe they are there and just never shared) the photos of the reality of most special needs families…

ISpeech Therapy don’t see hours and hours, every week, spent at speech therapy, occupational therapy, physical therapy, behavioral therapy, this therapy, that therapy, habilitation and medical appointments.  My average week has 9-10 therapy appointments, away from home, in addition to meetings with the school district, Early Intervention team members, case managers and other appointments, every week there is something new added to the list.

I don’t see the hours of therapy done at home, by parents (and siblings) who have educated themselves and learned all they can, so that they can carry out sensory diet activities five times a day, they work on motor skill development, they work on speech practice and spend hours on flash cards, PECS boards and aug comm devices in hopes of someday their child being able to communicate.

Tempber TantrumsI don’t see terrible temper tantrums, often violent, that many families with special needs deal with (to the point that this mama even needs surgical repair of a tear in her shoulder that resulted trying to tame such a tantrum, a surgery that has to wait, as special needs parenting takes both arms and a lot of lifting and driving).   I don’t see the challenge of going out in public, going to different places or being around different people, and how those can be incredibly trying for both children and families, never knowing when frustrations, illness or sensory issues may turn what should be so easy (let’s take the kids for ice cream!) into what feels like preparing to go into battle, being ready for whatever may happen, expecting and anticipating the unexpected and being ready to deal with it.

OTI don’t see the other children in the family being dragged along to those therapy appointments, instead of going to play dates or gymnastics classes.   I don’t see the torment that many parents struggle with because one child truly needs so much time, but all of their children deserve the same amount.

PaperworkI don’t see the hours spent going over insurance plans, appeals, claims, form after form after form that have to be filled out, and a never ending often overwhelming effort to find ways to fund therapies (and the effort it takes to keep that funding in place, be it out of pocket, through insurance, through state programs or a patched together version of all of the above).

GI don’t see the mind numbing fatigue of parenting that requires constant, never ending vigilance, all day and often all night.  Most of the other special needs parents I see in therapy office lobbies look exhausted, all the time, hair wet or in a very unglamorous ponytail, no signs of makeup, clothing wrinkled and often showing signs of wear (as many parents have neither the money nor the time to get out and shop for themselves).    A glamorous bunch we typically are not.

I don’t see the desperate, almost impossible task, of trying to balance a job that is needed to help pay for the needs of a child with special needs, with the day to day raising of the child.   There is rarely, if ever, moments of relaxed time in hammocks in the afternoon or drinks with friends in the evening.  Most special needs parents I know are working round the clock to try and get it all done each day, and most days even getting 50% of the “to do” list done would be considered a success.

I don’t see the loneliness that is a reality for so many special needs parents.   Many special needs blogs and bloggers have shared that this is one of those secrets that special needs parents don’t always share.   Some have shared why it’s hard to get along with special needs parents.  I won’t lie, I envy Kelle for her incredible support system of family and friends.  It is amazing, but not what I’ve seen to be the norm by any stretch.   Truth be told, the full time, exhausting life most special needs parents lead, leaves them very little time for nurturing relationships.   The irony being that they so badly need that support system.  Nobody can fault friends and family for fading back, when special needs parents aren’t pulling their weight in a relationship (I’ve often said I know that during the last two years, I’ve been a terrible friend, and thus never for a moment fault anyone who no longer seems to come around).   We aren’t hanging out at parks, play dates or kiddie gym classes, where moms often find even strangers to share some conversation and bonding with, a little pick me up in the day.

Sensory Diet At HomeI don’t see the home that looks like a toy store / sporting good store got dumped on it, with obnoxiously colored swings, trampolines, panel mats, ball pits, bean bags, balance balls and crash mats have taken over the living space, in order to provide a child with the sensory input they need to regulate their system and increase their motor skills.   The home with stacks of paperwork (has anyone come up with a net weight of all of the paperwork it takes to raise a special needs child???  It has to be in the tons!) that always seems to be out, no matter how hard you try to hide them.  The house with adaptations for physical limitations or the house with baby proofing that lasts for what seems like forever.  And don’t forget the house with large picture exchange communication system boards on the walls to give the non-verbal child a way to communicate even the most basic of needs.   Oh, and don’t forget the child stimming in the corner or crib, rocking or banging their head over and over, sometimes for hours.

EEGI don’t see hours spent in hospitals, going through procedures, surgeries and endless testing, in hopes of finding answers, finding fixes and improving quality of life.

I could go on.

So I guess that’s what my issue is.  All of the things that entered my life when I became a special needs parent (after seven years as a parent to a child without special needs, for a point of comparison), they do not seem to show up in her special needs world.  Maybe they are there, maybe they are not.   But I am uneasy with people thinking that what they see is an accurate representation special needs life, because they are missing so much of what reality is for most special needs parents.

Those items that they are not seeing, those are things that I think help people understand, just a little bit, of what life is like for a special needs family.    If I don’t return your call for a week or forget to send you a birthday card or miss an event at school, you might understand, just a little bit, when you see the things I’ve talked about, and how they impact life.  But if you think I’m dancing on the beach at sunset with my kids, then drinking wine with the neighbors in the evening, while my kiddos, dressed in the cutest outfits ever, are being entertained and cared for by family and friends, then things really don’t add up.

I love Kelle’s blog.   It’s just probably not the best representation of the life that most special needs families, like my own, are living.   She’s held up as a shining example of an incredible special needs parent (which she certainly may be), however I think many parents are deep in the trenches living a life that is filled with day to day challenges that are nothing like what Kelle shares (I’ve yet to see images of this type of special needs parenting experience on Kelle’s Instgram, but it’s a reality in many, many homes).   Those parents are rock stars.   There are some bloggers out there in the special needs community who are amazing and I think are wonderful representations of what many special needs families can identify with.    Blogs like  Love That Max, Autism Daddy, Shut Up About Your Perfect Kid, Maria Lin at Huffington Post, Adventures In Extreme Parenthood and Easy To Love But Hard To Raise share an experience that while maybe not identical to my own, seems to have a common ground.

So by all means, enjoy the beautiful blog and life that Kelle shares.  It’s glorious.  Just be aware that it is not what life looks like for many special needs families, even on the best of days.    Though hopefully we all share just as much love.

Comments

  1. says

    Thanks for the link!

    I’m not familiar with the writer you are discussing in this post, but I do know there are parents (and self-advocates) who make a point of showing the worth of people with special needs, and they feel to do that they need to focus on the positive to do so.

    I wholly and completely believe in the worth of people with special needs, but I also feel it is important to acknowledge both the good and the bad.

    It is an unfortunate fact that a lot of the desperation that pervades the lives of parents of children with special needs is due to inadequate support. If more parents had better support, then they would be better able to meet their children’s needs, and the special aspects of those needs wouldn’t seem so dire.

    Part of obtaining that support is being honest with what we need, as parents, and what our children need. Sometimes just knowing you’re not alone is enough, but I also hope that sharing the reality–both the good and the bad–can help parents get the support they need before bad things happen.

    I’m lucky in many ways, because I do get a lot of informal (family, friends, ect.) support, but I also know there are parents out there who don’t have that, and they’re hurting, and they need to know they’re not alone.

    Posts like this help! :)

  2. christi says

    Stephanie, I think you are so very correct in families needing support, and the difference it can make. I think that’s one of the reasons that I hope people don’t look at Kelle’s photos and blog, and think THAT is what life as a special needs parent looks like for all, like a beautiful never ending vacation. I think support is hard enough to come across (at least that’s been our experience), and if someone’s view of special needs parenting is all beaches and picnics and dress up and shopping, then we really don’t look like a group that could use support. I love showing the positives, but I think showing the reality is so important. I really don’t expect much in the way of support from our friends and family, everyone leads such busy lives, but instead I just hope that they realize that it’s because our hands are so full that we can’t do more for them, and that they extend us some grace and forgiveness on that end. :) I so often feel not only overwhelmed by what is on our plate, but guilty for letting others down as we no longer can live up to helping so many others as we once did.

  3. says

    Supports are hard to get, both in the sense that it can be difficult to find qualified, reliable, and trustworthy people to provided needed supports and in the sense that funding is often difficult to find, if it’s available at all.

    I also feel the guilt of not being able to help others as much as I would like, especially when we are so often the recipients of small acts of service that make a big difference in our lives. I make a point of doing what I can when opportunities arise, though, and knowing that it’s all I can do. It helps, but I do wish I was able to give more.

    Grace and forgiveness is the key, for ourselves and for others. There is sunshine and roses, but there’s also rainstorms and thorns. I suspect that holds true for everyone, no matter what the appearances of someone’s life may be.

  4. Anonymous says

    WoW…..I couldn’t even finish reading all of your negative outlooks on special needs and life in general. Some people, like Kelle Hampton, can naturally embrace life with a special needs child while always looking for the positive and others can only bitch and moan about it. So maybe your jealous, IDK, but your post comes across as attacking Kelle Hampton!!

  5. christi says

    Anonymous, maybe you missed my repeated compliments about so many great things about Kelle? And heck yeah, Kelle’s life (or at least what she portrays) looks like most people’s vacations, so maybe you also missed me saying that yup, I’d love to enjoy a bit of that life for a while, it looks like a lot of fun! Sure I’m jealous, hanging out with friends, cocktails, the beach – sounds great to me! I’m simply contrasting what “special needs” reality is for many people, which is a lot less time at beaches and in hammocks, and a lot more time in therapy offices, doctor’s appointments and trying to juggle it all with work. Stating facts is not bitching and moaning. Sure, I wish my kiddo was playing at the park or the beach every day, instead of being in a therapy office, working harder than a three year old should have to. Kelle has an incredible “special needs” life. She has an incredible life period. I simply don’t think that it is an accurate representation of what life is like for most special needs families (heck, for most people in general). Now if we could just get speech therapy on the beach, maybe we could bridge the two worlds, and I’d be the first to sign up for that! :)

  6. Christina says

    Wow Christi, i have to applaud you for being so brutally honest. I realised today when I collected my special needs daughter at school, that i am not the only mother walking around with this controlled, supermom front, but back at the ranch all the wheels are falling off the wagon. I am everything but a complaining mother, i keep all my feelings of helplessness, frustration, exhaustion, sadness, convusion …….. all to myself, and when i walk out of the house i put on my supermom front. Heaven forbid anyone should see the reality behind my front, the bar is set so high for us by other people, that we have no choice but to look and act 100% on top of things, while we are crying and screaming inside. The sad thing is, it does come across as complaining to most people, so what do we do, we dare not complain, we dare not fall apart, we keep it all in and hide our feelings. This is of course a very healthy attitude to have………………….but we have no choice, suck it up, pull yourself together because your special needs child, your other children, your husband, your friends needs you to be there for them, to be strong for them too. So for what it is worth, all my sympathy and understanding to all the honest special needs mothers out there, you are doing an incredible job, and you have no reason to think you are any less worth than the other special needs mothers who’s lives are like a walk in the park.

  7. mari says

    Thank you for this honest post!
    I´ve been reading Kelle´s blog for a while and enjoyed it very much. As I have no “special needs children,” I only saw the very happy and cute side of life with Nella and her family. Her story has brought me some understanding about a special needs child, but your story tought me that it can be quite a challenge for the parents and it is not so easy and cute as it may seem. I wish you all the best and hope a lot of people will read this post too, because it´s a very different story.. A big hug to you from somewere in Europe.. Thanx!

  8. christi says

    Christina, thank you for your thoughtful reply. I can tell you totally know where I’m coming from. We do keep so much bottled up, close to the chest, chin up, onward and upward, keep everything organized that we can to hold together what feels like it could so easily fall apart. I think that there is so much power in being able to say that no, I’m not super mom, let me take off that cape and show you reality, it’s not always easy, it’s not always pretty, I’m scared, I’m tired, I don’t know if I’m doing the right things. It allows us to relate, to connect and not feel so alone in our journey, to be able to say “yes! That’s exactly what I’m feeling!”. I could paint a perfect picture to share, but I would rather share the nitty gritty, and maybe, just maybe, connect with another parent, and assure them that they aren’t alone.

  9. christi says

    Thank you Mari for your comment. I do think parenting a special needs child does bring amazing joy to your life, it puts things into perspective and you learn not to take so many things for granted. I do hope that I can share a “real” view of at least what our life is like. It’s not always easy, pretty or smooth – and that’s okay, as long as that side, as well as the happy and cute sides, can be shared and maybe even accepted. :) Hugs back to Europe!

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>