Dear Newly Inducted Special Needs Parent

new-special-needs-parent

I see you.

And I don’t mean I physically see you (though I do). I mean I see inside you—I see the storm that’s tearing your soul apart, bit by unimaginable bit.

I can see you because I am you. Not now you, of course, but rather future you. And I’m here to say, I understand.

Whether you’re sitting in a hospital NICU or your car after a visit to a specialist’s office, your mother’s living room or your cubicle at work, I know your pain: a primal cocktail of fear and sadness and desperation and anger.

A feeling like none other you’ve experienced to date.

“They” have told you the second worst thing you could hear as a parent: Your child has special needs. Your child will never walk, talk, hear, see, process, understand, feel, be able to [insert physical/cognitive/functional ability here]. Your child is “not normal”.

And whether your child has suffered a sudden brain injury or suffers from a congenital disease doesn’t matter. The end result is the same: This child’s future is not the one you had imagined. This child is not the one you had imagined.

This child will not have the adolescence about which you have spent hours and days and months and maybe even years fantasizing. This child will need far more than you have anticipated. This child will become at once a trial and a blessing.

You feel guilty for having these emotions, I know. What kind of parent perceives her child as a trial? You should, after all, be glad s/he is here at all. And oh my god, you are. You are so indescribably thankful. You are so filled with love for this child, you could burst at any moment. But you are also worried. Very, very worried.

You feel guilty for questioning how you might possibly give this child the care s/he needs. You feel guilty for wondering how you will provide your other children with the attention they require. You feel guilty for fretting about how you will pay for all the medical expenses. You feel guilty for contemplating what all this will mean for your family routine and dynamics.

Some judgmental types will jump to curse you for thinking of your child as a burden because that’s all they see in your raw emotion. They will ignore the undying love you have for your child. They will ignore how incredibly grateful you are to have your child. They will ignore your desire to do whatever it takes to ensure your child is safe and happy and healthy. Instead, they will preach about how they would never ever ponder these questions, or worse, if they’re special needs parents as well, how they have never had these same feelings.

Forget them. They’re liars. And perhaps convincing themselves that they would never is just their way of coping.

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You will mourn for your child in the same way one might mourn a death. And you are mourning a death, if you think about it. The death of the hopes and dreams you had for your child. The death of the plan you had imagined for your family.

So go ahead and mourn that death. There is nothing unnatural or heartless or improper about it. It is part of the grieving process. It is necessary.

You will be bombarded with “God only gives special children to special people” and “This is God’s plan” from well-meaning people who think they’re doing you a service or simply don’t know what to say.

Grit your teeth and bear it. None of it’s true, so don’t worry. God hasn’t specially selected your child to suffer a lifetime of physical and emotional pain. He hasn’t chosen you out of many to live in agony on purpose. God isn’t that cruel.

You will see parents with “typical” children in the grocery store and at the park. You will see pregnant women smoking or drinking caffeinated beverages. You will see parents abusing their children, both verbally and physically. And you will hate each and every one of these people with all the darkness and malice your soul can muster, for how do they, with their carelessness and ungratefulness, get to escape your child’s and your living hell?

You are perfectly justified in having these feelings. But remember, it isn’t their fault. And while we’re talking about fault, it isn’t yours, either. So indulge in these emotions privately. Most importantly, don’t let them eat you up inside. They are perfectly natural but also potentially dangerous. Entertain them with caution.

Your child will grow and flourish and defy expectation. The cloud of depression and anxiety and despair in which you live will thin. You will feel better. Much better. Many of your initial fears will be allayed as your child comes into him/herself and his/her body. Some of those fears will remain, but they will not burn as hot in your heart.

Some may mistake your poise and grace and got-shit-togetherness as a sign that you’re “over it.” They may expect you to be just as social and able and willing and available as everyone else. After all, parenthood is hard for everyone, so what’s the big deal? What makes your life so much harder than theirs?

Just remember that they don’t know—can’t know—what it’s like to live your life. They don’t know just how many therapists and doctors your child must see, each with his or her own separate set of “homework” assignments to tackle. They don’t know that every play date is just another therapy session in disguise. They don’t know how much time and energy it takes to get one’s shit together every day. Their jobs are hard. But yours—yours is hard in a different sort of way.

The fact that your job is hard does NOT, however, make you a saint or a superwoman or a better parent. It simply makes you capable of doing what needs to be done, just like everybody else. What needs to be done for you and yours may take more time and energy. That’s the only difference between you and them.

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Eventually, while you may still ponder the what-ifs on occasion, you will mostly be unable to imagine life any other way. You will be comfortable in your routine. You will be well.

So let me remind you, newly inducted special needs parent, that I see you. I see inside you at the storm that’s tearing your soul apart, bit by unimaginable bit. And I promise you, it will get better. It will be OK. You will be OK. Most importantly, your child will be OK.

And I know this because I am you. Not now you, of course, but future you.

Related post: I See You Over There

About the writer

@sampsychmeds

Lola Lolita runs SammichesPsychMeds.com and plays on Facebook, Twitter, and Instagram. Hobbies include introverting, determining how cheap the wine has to be before she can't tolerate it, and trying to sleep while thinking about that one embarrassing thing she did in high school.

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Clare 2 weeks ago

Tina, I empthasise with you too. My son us 3 and undiagnosed. He cannot yet walk, has development delay amongst other issues. But I feel without a diagnosis he is not disabled yet not neuro typical, and feel in limbo. X

Stefanie 4 months ago

My son was diagnosed with William’s Syndrome 3 months ago, and its been quite a journey. He’s 18 months and just starting to crawl a few inches. It’s nice hearing that it’s okay for me to mourn the plans I had for him, and how I hoped life would be with him. He’s my only boy to boot, and I waited five years for him. We don’t know yet if he’ll be high or low functioning, but we love him to pieces.

darlene 9 months ago

Thank you.

Jan 9 months ago

Thank you! I really needed to see this today <3

tina 11 months ago

I love how sj put it. Differently abled kids.because I know my daughter is not disabled. She is autistic, high functioning and fully verbal and comes with wonderful abilities but also with many challenges ( especially in school setting ) but it has always irked me when a teacher talks about her disability. I identity with this post, she was just diagnosed last year so were still figuring things out. I also find myself feeling lost because her special needs are nowhere near many other kids needs but she still has her own special needs and struggles neurotypical kids don’t face. I feel like we aren’t special needs enough for than community but we also don’t fit in regular community because of her struggles… We’ll figure I out. Thank you for voicing what so many people are going thru

Deborah 11 months ago

My firstborn is autistic and blind, there is nothing that can be done to help him see and I accept that without much issue. Things are a little more frustrating at times, but until my second and third children were born I didn’t know any different anyway. No, I can’t imagine life any other way. It takes us a little longer to get in the car or get ready in the mornings, and although he’s eight, he’s just recently out of diapers, but he’s my baby boy and I love him exactly the way he is. He has talents that not everyone has and other people have sight that he doesn’t. Truth be told, I wouldn’t know what to do with myself if we woke up and he was “normal” one day. This IS normal for us. :)

Jen Dixon 11 months ago

This made me cry, smile and was 150% relatable. My incredible son Matthew is just that, incredible. Lord knows everyday has it’s challenges-but it also has amazing moments too. I wouldn’t trade a minute with my kiddo❤️

Beth Arsenault 11 months ago

HUGS to all the parents out there who struggle and battle and perservere EVERY DAY, every waking hour of every day, for their beautiful children, the ones with special needs kids and ESPECIALLY the ones with multiple special needs kids. You are not alone, and you are AMAZING.

Autumn Bragg Drinkard 11 months ago

This 9 year old beauty may be nonverbal by the world’s standard, but I will be her advocate and her voice. She will live with me always, but I don’t mind. My Dixie Jane is my heart. …. I cried I experienced all the emotions again just like I wrote it myself. Beautifully written.

Andrea Orr 11 months ago

Thank you so much for this.. I am struggling and grieving. He was diagnosed with ASD (Asperger’s) a few months ago.. Some days I am great and other days I just want to curl into a ball and sob.

Kellie Richards 11 months ago

It’s like I wrote this myself…

Jennifer Cupp 11 months ago

Love!!

Kerry Melinda Daniels 11 months ago

Well-written. Very true. My beautiful boy is 8 and has autism. No one really understands all that I have given up in my life to raise him.

Gs mum 11 months ago

Omg. In tears your so spot on and I’m so blessed and things are way better than can be just not typicsl and it does hurt its a learning curve no ine can prepare you for. It helps to knwo others ‘get it’ thank you

Jayme Lowenstein 11 months ago

I read this, and i have read other articles/blog posts and it still amazes me that there could be others out there that feel how i feel and have felt. Thanks to all those who “get it”

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