It can be Really Hard

“My child is struggling and I’m exhausted.”

“My spouse is disconnected from the family.”

“I feel like I’m not doing enough, but I don’t know what else to try.”

Being the parent of a child with special needs is challenging. In fact, it can bring unexpected stresses with spouses, siblings and even within your own belief in your parenting abilities.

You try your best to be kind, patient and loving but there are days when you’re so tired of the struggles that you just want to quit. I know, I’ve been there, I get it!

Parenting a special needs child has days which include…

Resentment that every day is filled with challenges.
Uncertainty of what’s best for your child.
Frustration with inconsistent information from specialists.
Sadness for dreams unfulfilled (and guilt for feeling sadness about it).
Irritation towards “helpful” advice from those who have no idea about your daily stresses.
Jealousy towards parents who have “typical” families.
GUILT for feeling any or all of the above!

You are not alone in this!

There are many others who are also struggling to make it one day, one hour at a time.

So what can parents do?

Find a support system

When you find others who also are walking this path you discover coping strategies, new resources, and support from other parents who “get it.” You will also find out you aren’t the only parent who feels guilty about their child’s extra challenges or frustrated because life is so hard at times.

Just knowing you’re not the only one makes things a little easier emotionally.

Ask for help

Asking for help is a sign of strength, not weakness. I struggled for years trying to figure out why I wasn’t getting through to my strong-willed, high anxiety child.

It wasn’t until I opened up about my challenges and asked for help that I discovered 1) I wasn’t “parenting wrong” – I just needed more information and additional strategies and 2) there is help out there!

Talk to your…

pediatrician regarding referrals to specialists.
child’s teacher for additional suggestions to help your child academically.
clergy, minister, counselor, or other special needs parents for personal support.
spouse or co-parenting partner to brainstorm family solutions.
friends and family for possible “mom’s time out” so you can recharge your battery.

Take care of yourself

This is where parents struggle the most! “But I just don’t have time for me!” If you want to be the best parent you can be, you need to allow yourself time to relax and recharge your battery.

Think of your energy as a pitcher of water,: if you constantly pour out your energy (the water) but never refill the pitcher, you have nothing to give at the end of the day.

Here are a few quick tricks my friends and I have used through the years:

Give yourself permission to take 5-10 minutes each day strictly for yourself. (I know, it’s hard, but your kids need you to do this)
Do something that relaxes you (a cup of coffee, read a few pages from an inspirational or funny book, or just sit and do nothing).
Use the buddy system…put the kids in their strollers or wheelchairs, buddy up with a friend and take a walk. The kids will benefit from the change of scenery, you’ll feel energized, and the
extra support of a friend is always welcome.
Swap childcare…this can be for running a few errands or even an afternoon out. Your kids also benefit from socialization with other kids.
Exercise…even if it’s only 10 minutes of cardio or stretching. My daughter and I would do “mommy and me” dance parties to her favorite tunes in the kitchen; it was good for both of us!

Take care of the relationship

For those of you co-parenting, make sure to take care of your partnership. Parents who are exhausted tend to forget to work on their relationship, get irritated and fail to communicate well.

Ways to enhance your partnership include:

a willingness to kindly communicate your need for help. This helps prevent the build-up of resentment between partners, i.e. “Well, she should just know that I’m tired of dealing with doctor appointments!” Remember, the other person cannot read minds!
give the main caregiver a break.
take time to be together (even if it’s just 15 mins) without the kids to talk about things other than the kids.
be a compassionate, supportive listener for each other.
acknowledge your partner’s strengths.

To the last point… if your spouse is great at handling your child’s homework struggles, step back and allow him to help. If one of you is patient in the morning and the other is more patient at night, use that knowledge to plan chores and childcare time.

My husband looked forward to after dinner playtime with the kids, which allowed me peace and quiet to clean up the kitchen and pack lunches for the next day.

Take care to nurture sibling relationships

It is so easy for much of your energy and effort to go to the child with special needs, especially with the extra doctor appointments, support specialists and academic issues that can be a part of your child’s therapy. Siblings of a special needs child might feel “slighted” at times. If this happens, be assured you’re not a bad parent, just a human one and try some of the tips below!

Make sure each child gets some undivided attention.
Even simple things like reading at bedtime or talks while driving to school count! It’s the quality, not the quantity that will make a difference.
Engage in your child’s activities.
Ask them about a school project, volunteer to make soccer snacks (cut up oranges are quick and easy), ask questions about the movie they saw with a friend. Your attention to the details in their day will matter.
Include your children in the care of their sibling, as appropriate.
There will be days when they will want to help, others when they don’t and that is fine. Caring for family members instills compassion in even the youngest children.
Give your children information as they want it.
Some children accept their sibling “just how she is” and others want to know “why she uses a hearing aid.” As in anything, children are curious and the more facts they have the better.
Empower your family by accepting what is your “normal.”
Every family does things a little differently, yours included. A child who is in a wheelchair is still your child, he just has a different way of getting around, which is normal for your family.

This lesson teaches other children acceptance, compassion and respect for others who also may do things differently.
Problem solve as a team!
There are times when challenges arise, empower your children by having them brainstorm solutions with you. It’s amazing what kids come up with, usually things we hadn’t considered.
All children should “overhear” you bragging about their accomplishments.
It’s so easy to get fixated on the cycle of struggles, but focusing on even the smallest successes or acts of kindness helps a family build each other up.
Invite other families over to play, don’t seclude yourself from others.
One of my favorite parenting blogs is “What Do You Do Dear?” written by the mother of two adorable children, Frannie and Simeon. Her son happens to be the cutest kid ever, and he also has spina bifida.

Mary Evelyn shares her journey, finds the humor and embraces their family’s normal in a way that makes you want to not only embrace but celebrate your family’s “normal.”