7 Sanity-Saving Tips if You Think Your Child has Special Needs

A cheerful Facebook Messenger ping interrupted my focus while getting the brightness and contrast just right on a blog photo.  I clicked over (because you know I can’t resist) to find a cheerful message from my blogging mama friend, Renae of Every Star Is Different.  Her smiling profile picture exclaimed,

“Kimberly, from Natural Beach Living, and I are launching a new 12-Month Blog Series – ‘Parenting Children with Special Needs,’  We would love to have you join us!”

Knowing these fellow bloggers and special needs mamas would be amazing to work with, I never hesitated in responding, “Sure!”

I scheduled the first post in the series in my editorial calendar without much thought and went back to my photo editing.  A month later, and only 4 days from launch as I so procrastinatingly do, I opened up that first series post draft to see a stark white screen glaring back at me.  And my brain freaked out…

“Oh. My. Gosh!  I cannot do this special needs series.  I don’t even know where to start.  I wonder how terrible I will seem if I back out…  My readers won’t care about the details of our special needs crazyness anyway.  Can’t I just keep writing about easy stuff – like play dough and potty training?  Wait.  Hold up, brain.  You know potty training wasn’t easy.  But it WAS easier than this – than being REAL about this special needs parenting stuff.  Except when it’s combined with that special needs stuff.  Then it just sucks.  And I did get through that.  Yeah… I’m so glad we’re done potty training.  Well aside from when JC still wets the bed.  But I’m not counting that.  How can I possibly join this group of amazing blogging mamas – with all their great special needs stories and blog content.  I don’t even have my kids’ special needs sorted out yet.”

Let me interrupt my brain for a second (it’s okay, she’s used to it) to give you a little perspective on why it’s so hard to know where to start our story.  In our family we have…

• 3 (amazing, funny, beautiful) kids – ages 4, 7, & 9
• 1 experienced trauma at birth (meconium aspiration, numerous resuscitations, double pneumothorax) resulting in a lack of oxygen and damage to the white matter of the brain (PVL)
• 1 was born a preemie and spent a month in the NICU struggling with bradycardia
• 2 diagnosed developmental disabilities (ADHD and Developmental Coordination Disorder)
• 1 IQ in the “superior range”
• 1 combination of developmental disabilities and that above-mentioned high IQ to make that child “Twice Exceptional” (2e) – which offers its own set of challenges
• 1 Pediatrician-suspected developmental disability still awaiting an evaluation (ADHD)
• 2 diagnosed mood disorders (Major Depressive Disorder and Generalized Anxiety Disorder – Generalized anxiety IS classified as a mood disorder, right? I think so…)
• 2 cases of Sensory Processing Disorder according to Occupational Therapists’ Evaluations (which, technically, is not a diagnosable “disorder,” since it’s not yet in the DSM-5)
• 1 case of beyond-picky-eating but “your child’s still ‘on the charts’ for growth, so let’s not worry about it,” says the Pediatrician to the worried mom
• 1 very overwhelmed & confused mama

“What advice could I possibly give when I so often feel like I’m failing at this special needs parenting gig?”  I mean… I’m still figuring this out myself!

I went to our Private Series Facebook Group to back out.  But when I shared my fears with my fellow bloggers there instead… they all said, “Me, too!”  And I felt better knowing there are other scared, confused mamas just like me – who are even willing to support and encourage me.

So, I’m bucking up.  I’m diving in.  And I’m beginning this Parenting Children with Special Needs Series with this thought and hope in mind…

[Tweet “I might not have answers for you. But I have experiences to share. And a ‘me, too.’ #specialneedsparenting”]

This post contains affiliate links.  Which just means if you make a purchase after clicking a link, I will receive a small percentage of the sale – without your price being any higher!  Thank you for your continued support.  For more information, see my disclosure policy.

Our first month in the 12-month-long series focuses on recognizing the signs of your child’s potential special needs.  But with that crazy list above, you see how hard it is to know where to start in sharing about the first signs of my kids’ special needs.  (And is it terrible to admit that I barely remember the specific details of all of our complicated journey!?)

So instead of sharing the specific signs I saw (and in an effort to protect my children’s privacy a bit), I’m sharing some things I wish I had done as soon as I started seeing signs of special needs in my children – right from the beginning of our special needs journey.  Let’s get started…

7 Sanity-Saving Tips if You Think Your Child has Special Needs

1.  Don’t Let Labels Scare You

The Centers for Disease Control and Prevention defines developmental disabilities in these terms:

“Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”

Many special needs people and parents scoff at the negative sounding term “disabilities.”  I totally get that!  I’m honestly not sure how I feel about it, either.  Some of the “disabilities” and “labels” I listed above actually enrich my kids’ lives in many ways.

[Tweet “My kids’ ‘disabilities’ help make them the amazing little people they are. #specialneedsparenting”]

Some argue that they’re just “quirks” or “personality differences.”  I don’t necessarily disagree with that either.

But “labels” and terms like “developmental disabilities” can help you get the information, support, and services you and your child need.  You will know what to type into that search engine.  And you will know what to look for at the library.  And you will connect with other moms in that Facebook Support Group.  All because of those words!  And even if you don’t end up needing much help, you still have the information and options to make an informed decision.

Do you have to write “ADHD” in marker on your child’s forehead?  Of course not!  It’s up to you how you use the labels and diagnoses once you have them, but at least you have them in case you need them.

2.  Beware the Comparison Trap

Yes, Facebook Support Groups are wonderful for finding fellow parents who understand.  You’ll read another mom’s story of her child’s meltdown and realize you could have written it yourself.  But remember…

[Tweet “Every child is different. Every family is different. Every circumstance is different. #specialneedsparenting”]

Comparing your child to another’s child or your parenting journey to another mama’s parenting journey can lead to disappointment and frustration.  And be careful to use support groups for support and not for medical information.  (I’m totally preaching to myself on this one.  I’m notorious for this.)

3.  RESEARCH – But with Good Sources

People will tell you to stop Googling.  Don’t.  Information and your instincts are your friends.  But do make sure you’re researching on reputable sources and not just random discussion boards and websites.  Scan through your Google Search Results with a discerning eye.  Click through and read if the site is a medical institution, government agency, medical study, or reputable news source.  Skip it if it’s a drug company or sponsored by one (unless you’re researching medications, but consider the bias, of course).  And do some poking around if it’s a blog to make sure the author is a professional and/or highly experienced on the subject.

Some of my favorite sources:

• Centers for Disease Control & Prevention
• University of Rochester Medical Center Health Encyclopedia
• American Academy of Pediatrics
• National Institutes of Health
• U.S. National Library of Medicine’s MedlinePlus
• ScienceDirect

4.  Document EVERYTHING

[Tweet “I wish I had kept a journal of the signs I was seeing in my kids. #specialneedsparenting”]

With specifics.  Like the date, time, location, and circumstances when my child tipped the shopping cart on its side and swung punches as I tried to move him from the front of the checkout line in the pet store that day.  Or the specifics in the story of social drama my child sobbed to me just before whimpering suicidal thoughts.  Those details will be so helpful than you realize yet so hard to remember when you need them.

I still need to get better at this.  I might make a printable tracking journal to help with this soon.  (Stay tuned!)

5.  Set up a System for Organizing Information & Paperwork

The amount of information you find will quickly overwhelm you.  Let alone the paperwork you amass if you’re documenting as mentioned above or starting the evaluation process.  Set up a system as soon as possible for keeping digital and physical information organized.

I’ve recently started using Workflowy to “clip” and organize websites, kind of like bookmarks.  You could also use Trello, Evernote, or just your browser’s bookmarking system.  And each of my kids has their own file for their medical paperwork.  I also use a scanner app on my iPhone to capture paperwork I would rather keep digitally.

6.  Don’t Forget to Notice the Good, Too

It sounds terrible, I know, but this can be really hard.  It’s so easy to let your passion for helping your child overshadow your child.  I know how badly you want to find help – like. yesterday.  But it will likely take time.  Your journey will take its own pace whether you like it or not.

Yes, be mindful of the signs and symptoms and challenges your child is experiencing.  Spend time doing research.  But don’t let all of that completely drown out the snuggles and laughs and simply noticing the positive in your child.  (Another preaching to myself moment here!)

7.  Accept that It’s an Evolving Process

When I started this special needs parenting journey with my oldest, I thought we would go through one evaluation, get one diagnosis, and get the help we needed.  Boy, was I wrong!  Five years, three evaluations, three diagnoses, many professionals, and even more appointments later, our journey (with just that one child) is still evolving.  I’m still not convinced we have the right diagnosis in regards to one developmental disability.

[Tweet “I’ve accepted that it’s a fluid process with no quick or easy answers. #specialneedsparenting”]

And we gain at least a small nugget of priceless knowledge and experience from each new part of our journey.  

More Advice from Fellow Special Needs Mamas:

Make sure to check out the other stories and words of wisdom from my fellow special needs parenting bloggers.

• Autism: What to Know and Signs to Watch For | Natural Beach Living
• How to Recognize Signs of a Mood Disorder in Young Children | Every Star is Different
• Recognizing the Signs of Childhood Trauma Disorders  | STEAM Powered Family
• Recognising Signs as a First Time Special Needs Parent | My Home Truths
• Hemophilia, Juvenile Arthritis, and Allergies… Oh My! | Grace and Green Pastures
• 12 Myths About Recognizing Developmental Delays | Life Over C’s
• Recognizing the Signs of Reactive Attachment Disorder | The Chaos and The Clutter
• When They Say It’s Just Your Parenting | This Outnumbered Mama
• Signs That Your Early Reader Might Have Hyperlexia | And Next Comes L
• How to Deal with the Unexpected Learning Disability | Kori at Home
• Forgiving Myself for Denying the Signs of Autism in My Daughter | Parenting Chaos
• Ripples on a Pond: Warning Signs of Early Childhood Development Problems | 3 Dinosaurs

And check back here on the 23rd of each month for more in our Parenting Children with Special Needs series.  

If you can’t wait that long, though, feel free to contact me with questions about special needs or parenting in general anytime.  Or ask for advice in the From the Mouths of Moms Facebook Group.

More Resources for Special Needs Parenting:

   

This post contains affiliate links.  Which just means if you make a purchase after clicking a link, I will receive a small percentage of the sale – without your price being any higher!  Thank you for your continued support.  For more information, see my disclosure policy.