What It's Like To Be A Parent To A Special Needs Child

When you become a parent, you don’t sit around wondering if your child will have special needs. As your belly grows, you wonder if your baby will look like Mommy or Daddy. You wonder what their disposition will be like, and other things that stay along the line of all positive.

But when you become a parent to a special needs child, everything changes instantly. It takes time to realize that nothing has truly changed, but that your life and their life will need some necessary adjustments made to accommodate them.

If anything, your love for them runs deeper. You feel as if you are the person who was put on this earth to give them their best life possible regardless of the hurdles that have been thrown their way.

And you are suddenly their fierce protector, willing to go above and beyond at all costs. You sacrifice yourself, and you don’t ask for anything in return. Above all, you make it your mission to shield them from the unkind ways of the world.

My little tribe of kids

Whether you know your child has special needs from pregnancy, shortly after birth, or possibly even years into their life, there are many common hardships that parents to a special needs child will face.

Here are the ones that I’ve found most prevalent in my own life when dealing with my two special needs children…

You emotions will overcome you sometimes

Just the other day, Facebook reminded me of a memory of my son who is nonverbal and high on the Autism spectrum. I was sitting in the waiting room of a doctor’s office, alone, anxiously waiting to see a doctor about my chronic sinus infection.

I lost it. How dare you, Facebook? Don’t you know now is not the time?! (It was and is a beautiful photo; I’ve included it for you below.) But why was I so upset? Because it was an image of my son pre-diagnosis.

I stared at the photo long and hard. Tears welled up from my gut, dripping down my face in salty, angry exclamations across my flushed cheeks.

This is not a photo of a child living with Autism, I told myself. But it was. You do not become autistic. It is something you are born with. And if you want to get into the vaccine debate then save it, unless you’ve experienced what it’s like to have a child on the spectrum, how dare you judge or put your two cents on someone whose entire life has been flipped upside down.

My son at 6 months of age.

Regardless of this, I was angry. And mainly angry at myself. I’d pushed away memories of my son from before his official diagnosis at just shy of two years of age. Why? Because it hurt too much to think about. In that moment, I realized that I am probably not the only mom to a special needs child that feels this way.

We spend so much time advocating for our children that we forget all the beauty and precious moments we’ve shared with them in our duty as their mother. Don’t forget all those beautiful memories. And if anything, remind yourself of them. They are a part of their journey, and each step is special and should be cherished and preserved. A good ugly cry never hurt anyone anyway.

me with my son at a baseball game, he did great with the noise this time!

You will put yourself on the back burner, like a lot a lot

I often joke with my husband that I look like a mommy makeover “before” photo. To be honest, there are days when I can’t remember if I’ve showered. (Thankfully my husband treats me no different either way!)

But as the mother to a special needs child, I’ve consistently been forced to put myself on the back burner to make the time or do the things that I need to do for my child. Many moms to kids who do not live with medical conditions can relate to this as well. There are times when I impress myself with the things I do on little sleep, lots of coffee, and the little imaginary cheerleader in my mind that tells me “you got this, lady.”

My wonderful family who make my life complete.

People will piss you off with their unsolicited opinions

I am the kind of person that will never disguise who I am or how I look to impress people hoping that they’ll like me. What you see is what you get, sorry.

Regardless of this, people will always feel the need to throw in their two cents about what you should do/not do, etc. I find this happens most often with people who do not have special needs kids of their own and feel the need to imprint their infinite wisdom onto me.

My daughter has ADHD as a result of a rare genetic condition, and people will often feel the need to share their two cents about her being on medication for school. Putting her on medication was not an easy process for me mentally, but after seeing her struggle with her grades and focusing in school for an entire year, I finally caved. And now? Well, she’s one of the brightest students in her class.

As far as Autism goes, I can’t go anywhere without someone telling me something they “heard on blah blah blah” or “you know, you should try XYZ” or worse, “I think my kid ‘had’ that/has a ‘touch’ of that.” Really, the list gets stupider and more offensive. I’ve learned over the years to brush these things off. But at first, even being the tough chick that I like to think that I am, this was very trying for my sanity and patience.

My two daughters, Violet and Daisy

Your “normal” kids will sometimes feel left out

My oldest child is as healthy as can be, and came right out of the womb ready to take on the world. For her, she’s been subjected to countless doctor’s visits, evaluations, and meetings. And not to brag, but she’s never once complained. She is a great girl and I am grateful to have her in my life. Even in the moments when she’s sassy as hell and giving me a mouth full of back talk. She really loves her siblings, especially her “baby” brother.

Kids are born with pure hearts. It is the world that shapes them and changes them. For my oldest child, she’s had to play second fiddle to her brother and sister more times than not because their needs are more demanding than hers.

My husband and I equally understand that she needs to be made to feel “special.” So, we try our best to reserve one-on-one time for her when we can. I say that because once when explaining to her what special needs meant, she told her father and me that she wanted “to be special too.” Just hearing her say that with her little toddler voice broke my heart. We do our part to make her feel special, just in a different way.

Me with my daughters

Each child is born unique, and so is their journey. While being a parent is hard, being the parent to a special needs child is even harder.

Please, practice kindness. Don’t give out unsolicited opinions. If you know someone who has a child who is special needs, let them know that you are thinking of them from time to time. I promise that is enough to brighten their day. You never know just when they’ll need to hear that most.

And if you yourself are a parent to a special needs child, know that you’re the best mother for them. And even if they aren’t able to say it, know that in their hearts and in their minds, you are their entire world.

If you are a parent of a child with special needs, you might find these resources helpful:

cpfamilynetwork.org a compassionate community that provides resources for loved ones with Cerebral Palsy
Learn about Financial Planning for Kids with Special Needs here
Autism Speaks, which includes many valuable resources for parents of children on the Autism Spectrum