Lessons Learned From A Weekend With A Mom of Special Needs Children

I’m in awe.

There’s a deep admiration stirring in my soul for those who care for children with special needs.

My sister is raising two sons with challenges beyond the average parent. Her boys have multiple diagnoses each, including learning difficulties and unique needs. 

It was a joy to spend a weekend with my sister. We don’t often get the time to hang out with one another without a list of things to do and places to go. We live hundreds of miles from one another. So our time together is precious.

She recently came to visit without her children in tow. She needed a break.  She was exhausted, physically, emotionally, psychologically and spiritually. Her life is consumed with her sons’ needs.

The challenges of a blended family of 6 and maintaining a household, is overwhelming. Adding the demands of special needs children can overpower and suffocate anyone!

Each morning she pops up hours before anyone else to prepare for the day. She ruminates about her daily schedule and like the rest of us; she is busy balancing life’s demands. 

Life is to some degree is different for her. Her boys don’t act like average kids. They say and do things out of the ordinary. People wonder, “Is that kid just weird or is there something wrong with him?” “She just needs to be a little tougher on him,” or “Will he ever amount to anything?”

Embarrassingly, I have thought, “Thank God, I don’t have kids like that.” Then went on with my life. 

Thankfully, I’m privy to the battle my sister has with parenting. She shares the anguish of being her sons’ advocate. Wondering if she is doing the right thing and never feels she's doing enough.

I struggle with knowing how to help, and I feel inadequate.

I don’t know much about the each boy’s specific diagnosis or how to help. I am hesitant in offering opinions and feel powerless that I don’t have answers.

Both of us were feeling powerless and I was reminded of a few words of encouragement, “You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule”, Matthew 5:3 The Message.

This is reassuring. When I don’t know what to do, someone else does. I need to be open and willing to listen to God’s guidance and direction.

After spending a weekend together, I know I do a few things that are helpful. Maybe these ideas will help you support someone you know with special needs kids too.

1. Be a good listener. We all want to be heard and understood. We need people to understand our struggles. A few easy ways to actively listen are:

·   Listen to heart. What are they feeling and where do they struggle?

·   Affirm their feelings. An example could sound like this, “That would be confusing......hurtful…..overwhelming” or “I would feel sad……angry….. tired if I were in your shoes”.

·   Ask, “Is there any way I can help?” or“What can I do for you?” 

Support by listening with your heart, validate their feelings and offer to help. Knowing they are not alone is encouraging and uplifting.

I hike a lot. Before embarking on a hike, it’s wise to consider what I need to be safe. I like to know my destination and how I’m going to get there. I need a map or compass to let me know if I’m headed in the right direction. 

There have been too many times when I’ve gotten lost because I didn’t have a map. It’s not a fun experience!

Being a good listener is like helping someone set his or her compass, or find the right map. Listen beyond the words. Listen for the deeper need. Let them talk about what’s happening as it may be what they need to move in the right direction

2. Offer Rest- Having a break is vital for a parent of special needs children. Most of us live on autopilot and don’t take time to rest. Yet, it’s essential for our mental, physical and spiritual health.

My sister didn’t know how tired she was until she took a break from caregiving. She took naps, slept in and went to bed early. She allowed herself to slow down and rejuvenate. 

She came to my home for a time-out. There are many other ways to give or encourage a respite.

·   Ask if you can run some errands or do chores.

·   Ask how you could help them find rest.

·   Investigate local respite care services and offer to do the research for them.

Rest is essential in life and when hiking. A little food is helpful too. Rest is like the food and water we all need. Rest is what sustains us on our journey.

3. Affirmation and Support Parents of special need kids usually feel like they never doing enough. Words that affirm, strengthen and highlight what’s working are supportive and encouraging.  Affirmations are reinforcing. 

You can be a cheerleader in their life. Here are a couple of ways to cheer them on:

·  Point out what they do well.

·  Ask them, “What do you think is working right now?”

·   Send them an encouraging text, scripture, quote or handwritten note.

Sometimes when I’m out hiking, I look for signs that I’m going the right way. Occasionally, I remember a particular part of the trail or lookout. Other times, when I’m on a trail for the first time, I look for markers confirming I’m going in the right direction. 

Affirmations are the markers that encourage the weary or lost to keep going. They are supportive and reassuring.

Prayer is active and powerful. God motivates us in Jeremiah 33:3,“Call to me and I will answer you and tell you great and unsearchable things you do not know.” We can petition God to direct and comfort those in need. We affirm and encourage through prayer.

My level of inadequacy and feelings of powerlessness diminish as I realize I can “do” much more that I thought I could. 

I hope the lessons I learned from a weekend with my sister are helpful to you. We can listen well, promote rest, offer to help and encourage with our words and prayer.