An Open Letter to the Parent of a Child with Disabilities, Complex Needs, Support Needs, and/or Special Needs

You are stronger than you know.  All parents have tough days, though your tough days are often fraught with challenges many parents couldn’t begin to comprehend. Many people are hoping to “get back to normal” after this strange year, but for you, normal is likely a word you choose not to use as your old normal is gone, never to return again.  When the “Why me?” tears build (and they undoubtedly will at some point, or many points), let them flow.  Don’t hide them.  Don’t feel shame or guilt.  Because it’s true, you’ve lost your old way of life - you have challenges you never signed up for, challenges you feel woefully underprepared to handle, challenges that surprise you, blindside you, are often ever-changing.  As you cry those tears, though, look inward, and you’ll see that, while it may feel you are crying over a lifetime past, what your tears most likely represent are “Why did this happen to my child?  Why can’t I help them?”  And that, right there, is why you are their parent.  Be it a cosmic force, a deity, kismet - whatever your belief system, for some reason, you were paired with this child.  You were meant to be their parent; to teach and support them, to love and cherish them, to see in them what the rest of the world doesn’t take the time to see.  You view them without judgement.  They are your baby, forever and always, and you are forever theirs.  Love fiercely, advocate strongly, ever lift them up and always hug them close.  Teach the world what it means to be inclusive, to love fully and unconditionally, and know how important your work as a parent truly is.   

- Shelley Sontag

Please share this with anyone in your life who may need to hear these words, to bolster their strength, to help them feel seen and understand their own worth.

I wrote this letter for the greater internet world back in Dec 2020. It had Been. A. Year. for everyone the world over. Many were still in pandemic lockdowns or modified lockdowns, masking was the norm (or the heated point of contestation in friend groups), we all knew how far "six feet away" from anything was without even thinking about it, and we were feeling ALL the feels ALL the time - fearful, exhausted, concerned, overwhelmed, confused, you name it.

While 2020 was the Year of Covid for most, and it was absolutely the same for our family, it was also my son's diagnosis year, where we learned he had Pitt-Hopkins Syndrome, an ultra-rare genetic mutation that both finally helped us to answer some big questions and also brought on so many more.

I've learned and grown in the nearly six years since then, sometimes baby steps of learning, sometimes leaps and bounds. One example is how I changed the title of this letter to include disabilities and complex/support needs, which I prefer to "special needs". When I teach inclusive language workshops, I try to encourage the usage of these terms. I kept "special needs" in the title as well because while language is ever-changing, it's often a slow and overlapping process. I want as many people who search with all the different terms to describe their kiddo's needs to find this as are able and hopefully get some support from it.

While for most the pandemic is a collective past memory, I feel the above letter is still meaningful and pertinent. Whether you just began your parenting journey of a child with disabilities, complex/support needs, or special needs, it's not the terms you use that truly matter. It's your child, it's you - you both matter so much! Your relationship with your child and with yourself matter, too. Remeber, you are ENOUGH! You are AMAZING! You've got this, even on your hardest days - if the checklist item is simply "survive the day", focus on that and what an important and meaningful goal that is.

All my love,

Shelley