When a crisis or abrupt change of life occurs, it can be difficult to express our needs. It’s no different for parents with special needs children. Depending on the needs of our child, we may get better at navigating the changes of routine, Dr. appts, surgeries, and special education, but we never get to a point where we don’t need help. Asking for help can be difficult for many reasons. Many times we’re not sure what we need. Other times, we don’t know how to ask, and other times we feel guilty for the asking. Today, I will share 7 ways to help parents of special needs children. If you have an idea to add to my list, please post in the comments. I love the participation of all our readers.

Take the time to get to know their individual needs

Parents with special needs children need to navigate the world differently than you might expect. When I am invited to an event, my brain starts racing. I start evaluating if we should accept the invitation or not. Will my child have access in his wheelchair, will the lights be too bright, or the sounds too loud, will there be too much stimulation or games he can’t participate in or won’t enjoy. If I say yes to this event will he feel included or excluded?  I don’t expect others to know what our needs are, but you can bet your bottom dollar I know the people who have taken the time to understand our needs and consider them before planning an event. They didn’t ask me 100 questions; they are friends who spent time with us and asked questions in a nonjudgmental, conversational style.

Be careful what you say

Whoever said, “Sticks and stones may break my bones, but words will never hurt me” was dead wrong. Words do hurt. If you notice something that is out of order, think before you speak. Some people speak out of nervousness. It’s okay, I get it, but my son doesn’t understand. After Danny had his G-tube surgery, I remember telling the surgeon one of the best benefits of the G-tube over the NG tube is that no one can see it. I can go grocery shopping and not have anyone stop me to ask, “What’s wrong with you son?”

Don’t get me wrong, this is a question I don’t mind answering, but in front of my son, in the middle of the chip isle well, that’s just a little weird.

Pray for them

Having friends you know you can send a text to that says, “pray” is huge! I can’t tell you the times we’ve been in the hospital, and I have needed prayers. I didn’t have the time or the emotional energy to explain why but I had friends and family I could text and knew they wouldn’t drill me for details but they would faithfully pray! Be that friend who can say, “I don’t need to understand what’s happening. Write when you can. In the meantime, know I will be faithful to pray” and then do it!

Help with Errands

There has to be a level of trust built in the relationship for someone to let you come in and clean their toilets, at least in my house there does. When people help me with errands around town or projects around the house, it has been an incredible blessing. It’s easy to feel like you’re always behind in something. If you’re on top of doctor appts, then you’re drowning under the laundry pile. If you’re on top of house cleaning you’re behind in making dinner. It’s a vicious cycle at times, so make yourself available to help with any errands you can do.

Bring a meal

Bringing a meal is especially helpful when there are surgeries or extra stresses on the family. You don’t have to be the next Paula Dean to be appreciated. I know it can be challenging to take a meal when there are multiple dietary needs in the home. It’s not unusual for parents with special needs children to make different dishes for different family members at every meal time. It can be overwhelming. To have a “night off” because a friend took time to bring a meal is a huge blessing.

Send a Card (maybe even include a gift card)

In our digital age sometimes we forget the value of a card received in the mail. It’s nice to go to the mailbox and see a handwritten note from a friend. You don’t have to write something profound. Just saying, “I was thinking of you and wishing you a beautiful day” would be a blessing. Those random notes of encouragement, even when they have been digital, have always meant a great deal to me.

Send a Gift Card

If you send a card like suggested above you might want to include a gift certificate. It doesn’t have to be a gift card for an expensive dinner it can be a gift card to Amazon, iTunes, or even a simple five dollar coffee card would be a gift so they can treat themselves to a coffee.

Other Ideas

This list is not exhaustive, and I’m not speaking on behalf of everyone. So please, take a moment to comment and share your ideas on how to help. Together, we can make a list that can be a help to others.

Until our next chat,

Mr.s. Joseph Wood

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How to be a friend when your friend doesn’t have a child with special needs.

First, let’s review a few essential elements from last week’s post.

• Friendship etiquette is necessary no matter how old or how diverse our lives might be.
• Friendships have challenges.
• Friendships add value to our lives.

This week, I have three areas where we can give some extra attention to enrich our friendships. So, let’s get started.

Communicate

We need to take the lead in creating healthy, open, communication between our friends. Don’t wait for there to be a problem. Discuss views, share experiences, and do it with grace. Often, I hear women with special needs children talk about how they “educate” others about their challenges, but in reality, we need less educating and more communicating. You see educating is one-sided. It’s like we have all the answers.

Let’s face it, we see and experience struggles of doing the simplest tasks. We can see problems that other people just don’t even think about because they don’t need something to be fixed. If we can’t talk about these experiences in a way that inspires change; then we’re just going to keep being frustrated. Honestly, none of us want to have a friendship that is constantly “educating” us. Friendships, like that, eventually lead to isolation. Wouldn’t we prefer a friendship of collaboration that merged two different experiences to make it better for everyone?

Here are a few questions you can use to get started talking. Remember to meet your friend where they are. Don’t listen with a critical ear, but with grace.

• What’s the biggest challenge you’re facing right now?
• You’ve often supported me, how can I be a support to you?
• Is there something specific I could be praying about for you?

Celebrate

Your friend needs to know it’s safe to celebrate their child’s success with you and discuss their struggles. They need support in their parenting, just like we need help in ours. Friendship etiquette is critical. Many times we can forget that while we’re happy to celebrate our friend’s success, it can make our friends feel awkward.

We can forget that some of our friends have had to process their own level of grief and sorrow for our child’s challenges. They may feel guilty that their child is passing our child up in specific areas. Maybe they worry about participating in activities our child won’t be able to do. This is why communication in our friendships is so important. We need to be able to reassure our friend that we want to celebrate with them just like they have celebrated, and at times, mourned with us. Healthy friendships are never one-sided.

Friendship should be about celebration make sure you’re sharing the victories and the laughter.

• What went well for you and your family this week?
• What’s the funniest experience you’ve had this week?
• Set aside time to scrapbook special moments together.

Create

It’s vital that we create an environment where everyone can thrive. Sometimes this isn’t easy to do. I remember my daughter, trying to plan a birthday party for Emmy where Danny would feel comfortable. She was looking for party ideas for children in Danny’s situation. Bekah got online and did research, spent time on Pinterest and still called me completely frustrated. “Mom, I’m so disappointed by the lack of party ideas for children in a wheelchair with sensory issues.”

Friends, we have a beautiful opportunity to create a better world for everyone if we cultivate friendships built on healthy communication, celebration and collaboration.

• Plan a party together where all the needs of each person attending are taken into consideration.
• Work together, within, your community to create environments that welcome all families and children.
• Together, create a menu of snack ideas that work for the needs of both families.

I know it’s not easy, there are many times we don’t have the energy to finish our basic daily routines. It gets frustrating when you’re trying to build healthy relationships with people in your community and you don’t feel that you’re very successful.

Take your time. Keep trying. It’s going to be worth all the effort, I promise.

Until our next chat,

Mrs. Joseph Wood

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Then it dawned on me. I can share right here on the blog. If you share your list in the comments pretty soon we’ll have a great list of things we wish others knew about being a special needs parent!

Are you a special needs mom?

What would you want everyone to know?

Here’s my list.

Special Needs Parenting: 10 things I wish everyone knew

1. Just because I’m busy doesn’t mean I’m stressed.
2. My family and friends deserve a lot of credit (aka chocolate) for being able to love me. I don’t ever take it for granted.
3. I have gone 987 nights without sleep. If my child can sleep through the night, the beeping machines don’t.
4. I can laugh at myself. I can cry by myself. I’ve learned a healthy dose of both is best.
5. I know more about putting in a g-tube than most emergency room doctors do.
6. Without fail, Airport Security will test my child (because he has a g-tube) for bomb residue. (And if we’re “lucky” they’ll even broadcast it on the intercom to cause a panic).
7. I’m not a superhero.
8. The world gets a better version of me because of what God’s taught me as a special needs mom.
9. I am thankful, really thankful!
10. I would do it all over again.

There’s so much more I could add to this list. The reality is that special needs parenting isn’t ever the same. Some days we got this and other days not so much. What you need to know about me today may change in some fashion tomorrow. Life changes fast in a special needs home, and other times it seems like the days drag on way too slow.

Let’s have some fun and put our lists together.

Make sure you leave a comment with your list of what you wish everyone knew below.

Until our next chat,

Mrs. Joseph Wood

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