Here’s How Receiving a Special Needs Diagnosis Rocks a Family; Plus How To Survive It!

Trish ~ Labor Nurse Mama
July 28, 2019

Photo by Jordan Whitt

I'm so honored to have Jennifer Carfora, sharing her story with you guys. Jennifer is my awesome Virtual Assistant and friend. She is the mother of a super special little boy who happens to also be special needs. Join us and read her story.

When a parent receives a special needs diagnosis for their child there will be a number of different emotions. It’s really not a one size fits all type of reaction; we all react differently. 

Take us for example, we mourned. We mourned the child our son would’ve been. Don’t get me wrong we love our son dearly, and no differently than his big brother.

Unless you are physically in our shoes, you will not understand.

But I will try to help you understand.

Why I am here and who I am:

Hey mama, I am Trish— AKA Labor Nurse Mama. I am a labor and delivery nurse with over 15 years of high-risk OB experience. I am also a mama to 7 kids and have given birth to 6. This means I am quite familiar with the postpartum period and how to navigate it. I am the online birth class educator for Calm Labor Confident Birth and The VBAC Lab birth classes and the mama expert inside our Calm Mama Society, a pregnancy & postpartum membership community! I am passionate about your birth and motherhood journey! You can find me over on IG teaching over 230k mamas daily. I am passionate about your birth and motherhood journey!

We make a small commission from some of the links (you don’t pay any more for using our links); however some of the recommendations, we do not earn anything; we love ’em and want you to know about them. Click here for our full disclosure. Thank you!

Take a few families with a similar diagnosis and their reactions: they were overjoyed with the diagnosis.

Special Needs Diagnosis: Finally An Answer!

They’ve literally been fighting tooth and nail with providers and specialists to find answers for their children who are well in their late teens and early twenties.

I would be happy to have a diagnosis after so many years as well.

Life Changes in an Instant

Fear's Over Fault

A parent might even blame themselves for the diagnosis. Was it something I did during my pregnancy?” has often crossed my mind. However, with a diagnosis of this magnitude, it all happened at a cellular level.

There was nothing I could’ve done differently to change the outcome.

Fears Over Your Child's Future

Despite the different reactions, we all have a common fear. What would happen to them when we’re gone? Who would take care of them when we’re gone?

Making the most of the First Trimester of Pregnancy: Here's How!

It is the scariest thought that continues to creep in the back of my mind. 

I hope now you understand why I feel the way I do. 

Photo by Priscilla Du Preez 

Care for Special Needs Diagnosed Child

Caring for a child with special needs is a beast of its own, it is definitely not for the weak. They say that having children ages you, but I beg to differ. Having a child with special needs ages you one hundred times more.

From the time he was in my belly I’ve noticed my grey hair quadrupling, and I am only 31-years-old! Not only have I noticed more and more grey hair, but I have also developed high levels of anxiety and even low levels of depression. 

This is where I tell you how important it is to take care of yourself, yes you! I know how difficult it is to find time for yourself.

I have two boys with one who has special needs. Finding time for myself is practically nonexistent. 

However, despite how difficult it is, it is a must. In order to care for your special need’s child, you need to care for yourself!

Self – Care When Your Child Has a Special Needs Diagnosis

1| R E S P I T E C A R E

Not familiar with Respite Care? Respite Care is available to those (caregivers) who take care of a sick or disabled person. Because caring for a special need’s child is a 24-hour job it can be taxing on you emotionally and physically. 

Respite Care can be done in the comfort of your home, special daycare centers, and even residential centers. You can use Respite Care to grab a cup of coffee with a friend or spouse, grocery shop, run errands, and so much more. 

Don’t know where to find Respite Care? I’ve got you covered:

Family VoicesApplied Self Direction

2 | T H E R A P Y

Another way to cope with caring for a special need’s child would be to seek therapy. There is absolutely nothing wrong with going to therapy. Your mental health is just as important as your physical health. Talking to a psychologist can be a great benefit because it gives you a support system and knowing you’re not alone. 

Going to group therapy can also be beneficial. I went to a Meetup for our son’s diagnosis last month and it was extremely beneficial in every way. They had us go in small groups by age and through the tears, we listened to each other’s story. 

Whether it is Dyrk1a Syndrome, Down Syndrome, etc. it is nice knowing that you are not alone in this journey as a special needs parent. 

3 | E X E R C I S I N G

The last thing you want to hear is how important it is to get some type of extracurricular activity. Trust me it’s a must. I was feeling down and unmotivated for a couple of months and it definitely caused my stress to reach it’s high. 

I signed up for a program that allowed for daily 30 minutes of intense workouts, and I feel more like myself again. I’m not saying to go sign up for a marathon or powerlifting competition, I just urge you to do some type of activity.

It can be:

  • Walking
  • Swimming
  • Hiking
  • Yoga
  • Jogging
  • Bicycling

You get the idea, get out there and get some fresh air. Even my little munchkin loves a good walk! 

4 | A C C E P T  H E L P

Lastly, never ever decline an offer of help. I totally get that you want to handle things on your own, I do. I feel that way myself. There is absolutely nothing wrong with taking a genuine offer of help. 

Just this past Saturday my brother in law offered to watch the kids for an hour while I ran over to Target for diapers. Yes, it was only an hour but I was able to go with a girlfriend, drink my grande vanilla coconut milk latte, and shop with absolutely zero stress!

I see you nodding in agreement, it is nice running an errand with no kids. It’s like a mini-vacation!

Photo by Caleb Jones

Final Thoughts

You are allowed to feel the way you do when it comes to handling your child’s special needs diagnosis. Don’t let anyone make you feel guilty for being sad about your child’s diagnosis. You’re allowed to feel the way you do, and sadly not everyone will get it.

Being a special needs parent can be isolating but there are ways to cope. I hope that my self-care tips will help you find time for yourself, physically and mentally. It is important. We need to be the best version of ourselves to care for these amazing kids.

My parting advice to you is, find your tribe. Whether it is online or a group of special needs parents down the street, find your tribe

Strike up a conversation with the mom or dad next to you during therapy sessions. Only someone who has received a special needs diagnosis can truly understand your day to day life.

How do you find time for self-care? I would love to hear it! Drop it below.

trish's signature from habibi house

Just a little Disclaimer: As always, I am just writing my thoughts and what I’ve learned along the way. Although I am in fact a labor and delivery RN, This is not medical advice. You should always seek and follow the advice of your care provider.

This post may contain some affiliate links (which means if you make a purchase after clicking a link I will earn a small commission, but it won’t cost you a penny more)! Thank you! For our full disclosure read here)


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