Tag: special needs

How to Encourage a Family that has a Child with Special Needs

by MaDonna Maurer

The African proverb, “It takes a village to raise a child” is a saying that most overseas workers would agree with. We do not have easy access to trusted family members to help us in times of need. We rely on those in our host country to help. I live on the island of Taiwan. For me, it has taken the island to help me raise my children, especially my daughter with special needs. We have lived on the island now for fourteen years. We have made friends in various cities due to my husband’s role, but also because he grew up here.

It wasn’t until we started planning to attend our son’s graduation that I began to think more about this African proverb. We knew our daughter with special needs would not be able to attend the ceremony. She is deathly scared of the auditorium where it would be held. As we tried to plan it out, a couple of friends let me know that whatever we needed, they would be there. That was when I realized that for me it has taken more than just a village, but actually an island, to raise my kids. I realized that in almost every major city on the island there were at least a few families that knew our daughter well enough to help at any given moment. And last year we even had a friend come from a different city to stay in our home for one week so my husband and I could go away for our twentieth anniversary, something we hadn’t done in over ten years. Seriously, that is more than friendship.

I don’t think we are special or have this amazing gift that people want to help. I think that most people want to help, but just may not know where to start. So, I asked some of my other online friends who happen to have raised or are in the process of raising children with special needs outside their passport countries.

Here are a few of their answers:

  1. Meals: Invite them over or offer to bring supper to their house if that is easier for them as a family. We have had both done — the latter when our daughter was younger, and it was easier to have her eat in her own highchair. But both ways allowed for these new-to-us people to engage with our whole family.
  2. Hangout Time: Take the child with special needs on a “date.” Gloria, mother to a child with Down Syndrome, says of her friend, “Beth has been intentional in investing in not just my life, but also in {her son’s} life.” Just taking him to a 7-eleven for a treat gives Gloria a break and has “meant the world” to her. Karis who lives in Mozambique, a mother to an adult son that is virtually nonverbal, also noted how she and her husband are encouraged by the people in the village and fellow co-workers singing with their son.
  3. Date Night/Lunch: Watch the kids for an evening, afternoon, or if possible, for an overnight. This is different from the above because it involves all the kids and the sole purpose is to let both parents have time together alone. If you can do an overnight, awesome, but if not, consider what one mother living in SE Asia says, “We appreciate our teammates babysitting our kids once a month so my husband and I could go out for a date lunch together.”
  4. Video Chat or message – Another mom living in SE Asia says that this was very helpful during the quarantine time when her adult child with special needs couldn’t go out and interact with others. Please make sure you have the parent’s permission before you begin this idea though. As we all know, parents have different rules and ideas about technology and social media.
  5. Don’t be so quick to judge – It’s easy to look at a family and think if they would just try {fill in the blank} then their struggles would be gone. Most likely, the family has tried your idea along with about 50 other ideas, and none of them worked. Maybe the child is just having a bad day. Typical kids have bad days and so do kids with special needs. Get to know the family and listen to what their needs are.

I believe you can sense a theme in these five ideas. This theme is of engaging and building a trusting relationship with the family. Maybe these ideas seem way out of your comfort zone. Trust me, before having a child with special needs, they would have seemed challenging to me. If this is the case, then let me leave you with one last idea, one last thought. Karis shared how the people sing with their son, but she also shared that it was wonderful to have them simply give him a handshake.

You could do that, couldn’t you? Or at least an elbow bump or a wave?

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MaDonna lives in Taiwan with her husband, a German MK, and their three children. She deeply believes that a cold grapefruit tea cures the summer time blues. She enjoys a good book and loves to write stories for children about life overseas. Visit her at her blog, raisingTCKs, or on Twitter @mdmaurer.

Raising Children With Special Needs When You Live Overseas

By MaDonna Maurer

“Your daughter has a rare genetic syndrome called Cri-du-Chat Syndrome, and she needs a feeding tube.”

My dreams, my desires to live overseas, seemed to shatter with that diagnosis. The past 10 months all made sense. This was the reason she was hospitalized in Beijing for bronchitis at 3 months old. This was the reason for choking almost every time she nursed. And this explained why, just a few months before, she lay limp with pneumonia on a large hospital bed in the middle of China next to six other children with some sort of lung infection. All of this led to me flying alone with her to the U.S. for medical tests. This was the reason I sat in that small clean consultation room with a doctor I barely knew.

Was this going to be the reason God would end our time overseas?

And then the haunting question, How am I going to tell my husband Uwe half way around the world on the phone?

To date, that was the hardest phone call I have ever had to make.

When Uwe and our oldest son (20 months) arrived in the U.S., we believed our time overseas was over. At that time we only knew of one other family living overseas with a child with special needs, but our daughter seemed to have more medical issues. As we consulted with surgeons, therapists, and doctors, not a single one hesitated to tell us to go back. This was incredible to us because we, like so many others, didn’t think it possible that families affected by disabilities could live and work overseas. So with a list of diagrammed exercises, extra feeding buttons and bags, and a feeding machine, we returned to China. Uwe went back to work as principal at the international school, and I began therapy with Matthea. Life changed, but God had not. He was still good. He was still providing.

Our story isn’t unique. There are others like us. Last week I was able to interview eight families ministering overseas who also have children with special needs. All of our stories seemed to share the following three themes.

 

1. God is good, and He loves us.

One of the mothers whose child has Down Syndrome wrote, “Oh man, He (God) is just so good. He has just blown me away. He is so gentle and loving. He has been an incredible Father to us, preparing us for this journey ahead of time in ways we couldn’t have dreamed… He didn’t just knit our family together. He did it in this country for such a time as this.” We know God is good and He loves us. We even sing about it. But, when we watch others struggle or struggle ourselves we wonder. We doubt. We have to hold on, though, to the truth and trust that God is good and that he loves us.

 

2. The struggles are real, but God provides.

No matter where you live or what you do, there will be struggles in this world. The Bible promises this, but God also promises to provide for our needs. As parents of children with special needs, we have our share: lack of educational options, lack of therapy options, language barriers, lack of friends for our kids, and emotions that range from fear to loneliness to guilt. All of these struggles are real, but each family interviewed shared how God has provided for them in ways that they would never have dreamed of.

One father wrote that the “Lord is so graciously meeting” the need, though possibly temporarily, of their son with Down Syndrome through friendships. A mother whose son is on the autism spectrum has felt “very lonely and disconnected” at times, but God has provided an outlet through Velvet Ashes for her to connect with other ladies.* As I personally struggle with whatever the need is at the moment, I’ve learned to stop and remember the past: how God provided the therapists to help Matthea eat by mouth (no tube feedings for 7 years now), teachers to help us educate her, and how he has provided strength for each day. I am learning to trust Him to provide for the future for just the right thing at the right time because God is a gracious Father.

 

3. God called us.

When God places a desire in your heart, when He “calls” you to do something, you obey. Every family shared that the reason they are going overseas or the reason they stayed was because of God’s calling. Just like us, they prayed about the situation, consulted professionals and sought out godly advice. God opened doors and gave affirmation. I can vouch for what one mother shared about how her ministry to older orphans with special needs became deeper after the workers knew of their daughter. “Somehow, by God’s grace, our concern for them is felt as more genuine.” She also added, “the workers have realized through interaction with her daughter that people with special needs have much more potential than they thought.” God uses our struggles, our weaknesses, to reach the lost.

Our family’s story isn’t over. We are no longer in China, nor do we work in schools. God led us to Taiwan and gave us new dreams and desires. He allowed us to start Taiwan Sunshine, a non-profit organization that supports and encourages families who have children with special needs in Taiwan. Our dream is to share the hope we have in Jesus with every family in Taiwan.

In the book Restoring Broken Things by Steven Curtis Chapman and Scotty Smith, Scotty shares, “And who among us willingly chooses a life story which, by its very nature, will be a narration of our weaknesses? No one does, because it incessantly demands a Savior much bigger than us (pages 182-183). God uses our weaknesses, whether we live in our passport countries or as missionaries on the field. Regardless of your struggle or situation these themes apply to all of us. God’s strength is made perfect in our weakness (2 Corinthians 12:9).

Remember:

God is good.

God loves you.

God will provide for your every need.

 

*Velvet Ashes will be hosting one Connection Group this fall for mothers whose children are affected by disabilities.

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MaDonna lives in Taiwan with her husband, a German MK, and their three children. She deeply believes that a cold grapefruit tea cures the summer time blues. She enjoys a good book and loves to write stories for children about life overseas. Visit her at her blog, raisingTCKs, or on Twitter @mdmaurer.