Isolated by my child with invisible special needs…

In his short 3 years of life, I’ve taken him to over 300 appointments. From pediatricians, to naturopaths, chiropractors, dentists, psychiatrists, speech therapists, occupational therapists, dermatologists, GI doctors, ENTs, allergists and behavioral analysts – we’ve seen them all. Along with a slew of physical health problems, the icing on top was multiple mental health diagnoses. Opinions have varied but so far he’s received the following: ADHD, Sensory Processing Disorder and Emotional Lability. With High Functioning Autism, Oppositional Defiant Disorder and Bipolar Disorder all possibilities on the horizon of his future.

My son isn’t in a wheelchair nor is he deaf or blind and doesn’t have some other physical characteristic trait that would help you recognize that he is different than you. But he is.

Neither scenario is better or worse, all present their own challenges. One of the biggest challenges for both I’m sure, is isolation.

So from the perspective of a mom raising a child with invisible special needs, here is a peek into our isolated lives.

You see the smiling faces in the sweet family photos we post. You see us in public on good days and say “what well-mannered children you have!” 

But what you don’t see are the private struggles. 

And there are many. 

Too many, in fact. 

Should you catch a glimpse of one of the outbursts or meltdowns, you inevitably say “that child needs to be spanked!” 

Sometimes I hear you whisper “it’s because she’s a single-mom. That boy needs a man in his life.” as if I can go pick one up at the grocery store. 

You offer your insights, and boy, do you have many!

Maybe it’s because he doesn’t have a dad. Maybe it’s because his dad is mentally ill. Maybe it’s because during her pregnancy and first year of his life, she was in an abusive relationship with his dad. Maybe it’s because she’s young and needs to read a few parenting books. She’s had a few questionable relationships, so maybe her character is questionable and how she raises her children is also then questionable. 

While you speculate from a distance, there is so much you don’t see up close.

You don’t see the days I break down in tears, as my greatest fears all but consume me: am I raising a future sociopath? 

You don’t know that I have never once spoken an unkind word over him. Ever. I know the power of words and I’m hyper-aware of what I say, both when speaking directly to or about him. 

You don’t know how much counseling I’ve been through and work I’ve done on myself to make sure my own brokenness doesn’t play a dysfunctional role in raising my children.

You don’t know how many parenting books I’ve read, seminars I’ve been to or the amount of hours I’ve logged with mentors.

You don’t see the time spent researching sociopaths, psychopaths and those with narcissistic personality disorder — the inconclusive studies I’ve analyzed that speculate those are genetic disorders and arguments saying it’s how a child is raised. You don’t see how hard I fight to give him a healthy, stable life in hopes of combating the potential genetic predisposition he may have towards those illnesses.

You don’t see all the time, money and energy I’ve poured into seeking out every possible resource I can get to help him.

You don’t see the time spent driving to different cities to see different specialists.

You don’t see how his behavior hurts his sister and I and how much we sacrifice for him.

You don’t see how hard I advocate for him.

You don’t see him crying by the window, hopelessly watching his friends run and play – not understanding why he can’t join. Not because they are exclusive; but because this time, I’m unavailable to provide the all-consuming attention he requires to make sure he doesn’t hurt anyone.

You don’t see the amount of social gatherings and parties we have to leave early. He’s overstimulated by the lights and the noise and a meltdown is about to ensue.

You don’t realize we stopped coming to the mom’s group not because we didn’t like you or want to be friends, but because my child is different and nobody knew how to handle him.

We stopped going to the park playdates because it’s too hard to trail on him, watching his every move, waiting for aggression to make an ugly appearance.

I stopped coming around because you thought I should medicate him and I didn’t want to. Or because I thought medication was the only solution and you told me not to and that I wasn’t trying hard enough.

Or because you were so quick to judge how I handled a situation with him – not realizing he attends a special behavioral program and I take my advice from professionals who work with difficult children day in and day out.

You don’t realize we don’t hang out because of how you react to him. Yeah, he can be handful. Yeah, he doesn’t always act in ways that are socially acceptable. But also, when you’re constantly annoyed with him, he picks up on that. I am aware of the power of the messages given to our children – spoken and unspoken. So maybe we stopped coming around because the message received in that environment, was that he is a problem. That counteracts the time I spend trying to teach him, he is a joy, a delight and a good person – it’s his behavior that’s wrong.

2 thoughts on “Isolated by my child with invisible special needs…

  1. It’s so hard. My boys are older (11 & 10), but so much of what you wrote resonates because my experiences are so similar. You’re emotionally depleted & need community and people who you can lean on, but at times leaving the house is impossible. My kids both have ADHD & sensory processsing disorder & the possibility of other diagnoses on the table. I have always felt there may be high functioning autism in both. All to say, I get it. I also get reading all the books and going to the specialists and working hard on yourself to make sure you parent in the best way possible. Keep writing. As hard as it is to read your pain, it’s a reminder that it’s not just me. All the best to you and your family as you help your son.💙

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  2. I cannot imagine what things are like for you and your family. I know we never hung out outside of school but I wish I could be there for you! I have some trouble with my 2 year as well. I hope that things improve. It know it is hard when your in public or over hear people but just remember you are an excellent mother!!!!

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