Ugly Truths from a Special Needs Mom

In the three short years that I’ve been a special needs mom, there are some unexpected and somewhat ugly truths that I’ve learned when it comes to being a parent of a special needs child.

These truths were not found in a pamphlet in a doctor’s office or explained to me in preparation of being a special needs mom. Instead they were learned the hard, heart-wrenching way.

Maybe your ugly truths are similar to the ones discussed here. Maybe there are some that you’ve experienced that are not covered. If so, please comment below and let me and the other readers know so we can all share together.

We need each other to be successful at this parenting thing, and we gain strength when we know others have been through the same struggles that we are going through. Strength in numbers, right Mommas?!

Grieving Comes in Waves (again and again)

When you first receive the diagnosis that your child will have special needs, going through the grieving process is critical for your mental well-being. But don’t think it’s a once and done deal. It sneaks up on you at the most surprising times and you will grieve once more for your child.

It may be at the park when there are other kids around and you realize your child can’t move and climb like the others. Or you see another child with the same diagnosis and his progress is so much more advanced than your child’s development.

It could be during an IEP evaluation and there it is in black and white what someone else is saying about your child. They see your child’s weaknesses and remind you once again that your child is below the normal range in one area or another. You read it and weep.

You weep because this is not the life you wanted for your child. You weep because you can’t change the hard facts about the life your child will face and faces every day. But in your grieving also know that your child was made for a purpose and for a higher calling. “Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.” Proverbs 19: 21

Learning to Accept Your Child’s Delays

It’s never easy to see your child struggle even when it’s your “healthy” child. But a hard lesson for special needs parents is learning to accept your child just as he is; delays, weaknesses, and all.

It hard to not be jealous when you see other kiddos with the same diagnosis doing so much better than your child. It’s hard not to feel a little anger rise up in your momma bear heart and want to fight for the injustice. “Why is it that she doesn’t have to have therapy twice a week? And look at that, she’s not wearing leg or foot braces!”

Just remember you are normal to feel these jealous and angry feelings.

Give yourself grace and remember it’s all in God’s time. Remember He has already done so much for your child. Just look at how far she has come and know that this season you are in will not last forever.

Eventually your child will meet her next milestone and there will be great rejoicing!

There Will Be Lots of Low Lows and High Highs

Over the past three and a half years (counting pregnancy) there have been really low lows and really high highs. It’s a roller coaster ride of emotions over and over again. Most of the time it’s all in the same day!

The really low lows have been filled with anger, anxiety, and deep sadness for what my child has endured and has yet to endure. He’s still young enough that he doesn’t really understand how his disability sets him apart from his peers but it rips my heart in two knowing that some day he will see that difference.

It’s an overwhelming sadness when we as mothers see other children at the same age capable of doing so much more. We want to give our children the opportunities to try new things for their age like soccer, t-ball, dance or swim lessons, but most of these programs do not offer the extra assistance that our kiddos will need. Or there’s not a special needs group in the area that we live in making it seem like the option for sports is out of the question.

And then there are the really high highs. Those joyous moments when a milestone has FINALLY been reached! Or you get good news from one of the many doctors that since your child is doing so well, the check-up visits will be much farther apart from now on.

It’s in those really high times we learn to celebrate big the small things, because they are big things for our children. We know what a long road it’s been to reach those milestones. We see how hard our children work to do those normal things that most of us take for granted when we are doing them ourselves.

The high highs are the times we like to share on Facebook and Instagram how proud we are of our special needs child. And it’s encouraging and uplifting to see our friends and family celebrating with us. As a special needs parent, you need all the encouragement you can get, so share away friends!

You Will Have Feelings of Isolation

The other thing most special needs moms experience is the feeling of isolation. People just don’t know what they don’t know. And having a child with special needs puts you in a whole other world.

A world filled with endless medical bills that most people have no clue about, endless therapy appointments, doctors’ appointments, and tests.

We worry and pray there are no set backs, no regression, no surgeries. It’s a world where vacations are few and far between because so is the extra money.

We feel isolated from others because no one in our close circle checks in on how we are holding up.

There’s not a lot of date nights because that requires a sitter which requires money. And said sitter needs to be aware of our child’s limitations, food allergies, and other things to look out for.

A girl’s night out happens even less often than the date nights because honestly we are too tired to even want to go out.

Self-Preservation Comes in Many Ways

It may sound silly at first because according to the dictionary self-preservation is the protection of oneself from harm or death. But once you assume the role of a special needs mom, it’s a basic instinct to protect our sanity and our heart.

It looks different for each person, but do any of these sound familiar to you?

Self-preservation is keeping your head down, focusing on your own little world, and trying not to be envious of other’s ability to do things, go places, and have opportunities (like a beach vacation!).
Self-preservation is not getting offended when no one calls or texts to tell you they miss your friendship, or that they are thinking of you.
Self-preservation is to keep trying to be a better mom and wife today and the next day because these people are your LIFE and you would die without them.
Self-preservation is spending time together as a family, forgiving each other (most times daily), and loving each other more than we love ourselves.

You may find yourself shying away from others. And if you do, don’t feel guilty for doing what you need to do to preserve your sanity. But do make sure you have at least one person to talk to whether that’s your spouse, a best friend, or even the people in a supportive Facebook group.

You Will Have to Depend on Others

What I was not expecting when I became a special needs mom is having to depend on others for help.

My husband and I like to keep to ourselves and we don’t like to be a bother to anyone. But being the parent of a special needs child means you can’t do it alone.

While the husband is working to pay for our livelihood, someone else has to help with child care for the older sibling while I’m two hours away at doctors’ appointments. And someone else has to help me by going to those doctors’ appointments because I’m not driving two hours with a small child and no backup!

It’s never been easy to ask for help and it’s even more frustrating when you don’t have many people willing to lend a hand. The hard lesson here (and ugly truth) is that most people don’t really want to help. So make sure you know who you can depend on because you will need outside support.

Ways to Overcome These Ugly Truths

Count Your Blessings

Have you heard the song, “Count your blessings, name them one by one. Count your blessings, see what God has done..”

The best way to kick negative emotions/thoughts to the curb is to be grateful for what you already have. When you feel yourself going down the rabbit hole of negative self-talk, stop and think of five things to be thankful for right then.

To help with this, I’ve created a free printable that you can use to list those five things for each day of the week. Try it and see how much more positive your days and weeks will be!

Find a Facebook Support Group Specific to Your Child’s Special Needs

It’s important to connect with others who have already gone down the road you are on, so don’t be afraid to reach out for a helping hand.

I’m sure you will not find a more supportive group than the ones filled with parents that understand your pain, have been where you are, and can help with the needs of your child. There is strength in numbers and it’s what your momma heart needs to find comfort and solace knowing you are not alone!

Check on Other Special Needs Moms

I know how easy it is to get caught up in our own lives and forget to check on other people. I mean it’s not like we have tons of free time!

But sadly, there are more special needs moms out there today than there were 10-20 years ago. So it’s likely that you know personally one or two of them.

Don’t wait for them to check on you. Make it a point to check on them every few months. Put it in your calendar on your phone if you have to, because they need you too!

Share Your Knowledge with Others

Just as you were encouraged by others and their experiences, you can encourage other parents too. Maybe that means starting your own blog, or making others more aware during the awareness month for the condition your child has. Here are some ways you can bring awareness if you are needing some ideas to get started.

MAKE Time for Self Care

I know you’ve heard it a million times but I want to tell it to you again, Momma. Make time for yourself!

As parents of a special needs child you don’t have spare time lying around just waiting to be used and no one’s going to find that time for you, so be intentional and make time for YOU! It’s not being selfish.

When we are feeling more like ourselves and not the tired, cranky version, we are better capable of handling the stresses of the day and can take on our little world one small human at a time.

Need some ideas of self-care that can be done even if your short on time? Here are just a few ideas:

♥ Take a nap! (What?! I know, right!)

♥ Sit outside with your favorite cup of tea/coffee/wine AND DO NOTHING!

♥ Do some Yoga with Adriene (she is the best!)

♥ Chat with a friend on the phone. Even better if you can make it a weekly habit!

♥ Meditate, pray, practice deep breathing

♥ Journal or write down your blessings for the day (practice the attitude of gratitude)

Check out this post that gives you 61 self-care ideas for moms without having to leave your home!

There’s even a free printable with the list of ideas and affirmations are included. Check out the link above!

I Want to Hear from You!

What ugly truths have you discovered in becoming a special needs mom? Please share with us because I’m sure we’ve all felt the same.

What are your favorite ways to overcome the stresses of being a special needs mom? I would love to hear them.

Comment below or send me a personal message!