Hello everyone.

 

It’s been quite a while since I’ve done the blog thing.  Again, busy.  Plus, I never know just exactly what to write.  We have been surviving the ice and cold weather.  It was nice to have a few days with no where to go and time to sit around a warm fire, sip cocoa and play board games. 

 

The boys have been playing basketball for the local team. Well, they call it basketball.  I suppose because you use a basketball to play it. However, with the first and second graders, it could be mistaken for tackle football just you use a basketball and put it through a hoop instead. LOL It is fun to watch and equally funny. 

 

I’ve gotten back on track with my schedule and all of my wife/mother/personal duties.  The holidays remind me of taking vacations, when you go it’s all exciting and fun, but when it’s time to come home that’s great too.  It’s nice to return home to familiarity and routine. 

 

We started homeschool enrichment classes (EC) today.  The boys were so excited to see all their friends and it was good for me to visit with so many wonderful other homeschooling moms.  This semester Tyler and Ben are going to the group, but Ryan is staying at his preschool.  For those who might not know, he is at a special ed preschool.  Putting him into the preschool was a hard decision for me and even harder was to leave him there while we go to EC.

 

Ryan is sweet and mild and does well around other children.  However, his physical disabilities make taking him to a normal/typical class difficult.  He needs help with basically everything from coloring to playing a simple game of “duck duck goose”. Plus the fact that he doesn’t talk and uses sign language makes it difficult for him to communicate. I am sure that the people at EC would try to accommodate his needs, but truthfully keeping him where everyone knows, loves and is comfortable with a special needs child is important also. 

 

The issue of “what to do with Ryan” has been a reoccurring theme in our family as of late.  I’m sure that most families with special needs children go through this, but it’s something that I never thought about until I had one.  As Ryan is fast approaching five years old, the developmental gap between other typical children widens, and the adult fear factor increases. I’m finding that people everywhere, even churches (yes that one in Durant too) don’t know how to help, or support families with a special needs child.   It seems we are starting not to “fit” in some places because of Ryan’s needs, as he grows older. As a result we are struggling finding the balance between what is best for Ryan and what is best for our whole family.

 

Here, I could digress and list all the things that are so much harder with a special needs child or how many people have made our lives more difficult.  But, that would not be helpful. J  So instead I want to focus on how help someone (not just me) with a special needs child.

 

In November 2003, I read an article by Patsy Arnold, mother of a special needs son.  She told their family’s story and outlined 10 things that people can do to help support special needs families.  It is long, but if you really want to learn and help, you need to take the time to read and be willing to listen. (If you can make it to number 10, great! It’s a biggie for us.) Here is her list:

 

1.  Pray. Pray daily for the child's specific circumstances. Ask the parents what their current goals for the child are, and pray about those issues. Pray for strength and wisdom for the parents. Pray for other children in the home. Pray for the professionals (doctors, therapists, etc.) working with the family, especially that they might be compassionate and sensitive and not cruel or discouraging. Pray for the family's finances. Pray for the parents' marriage, which will be strained or strengthened, depending on how they perceive the situation and how much they press in to the Lord.

 

2. Listen. In America today, we think we are supposed to know all the answers. We thrive on solving each other's problems, on giving the best advice and then seeing it work. There are no easy answers for the family with a special needs child. There are no canned responses to their problems. Do not avoid them if you do not know what to tell them. Just listen. Hear their hearts. Like parents of typical children, they want the best for that child. You do not have to know what to say, but they need to know that someone is listening. For some, you may be the ears they can see that help them understand that God hears, too.

After you have listened, pray with them. Do not worry about whether you know how to pray aloud. Frankly, whatever you say will be beautiful in their ears. What will matter most is not what you say but the fact that you were willing to say it.

 

3. Learn. Learn all you can about the issues the family is facing. Read. Ask questions. Most families do not object to a gentle question such as "Would you mind telling me your child's story?" As the parent opens up, ask first, "May I ask you a few questions?" before you begin to probe. Some are ready to face the hard questions that may surface; others are not.

Once you know what specific labels or diagnoses may be involved, educate yourself. Learn everything you can about what that family is facing. Reading is not the same as their personal experience, of course, but you can familiarize yourself with some of the terminology and challenges.

4. Give of your time. Spend time with the family. Interact with the child, gradually introducing yourself into his life. As he becomes familiar with you, his parents will come to trust you, and that will free them to leave him with you for short outings. It is also very, very important to a family with a special needs child to establish normal social relationships, to have friends whom they can visit, to have friends who can visit them, to have someone to talk with about other things besides the child in need.

5. Remember the other children. Encourage your children to develop friendships with the other children in the family. Offer to have them over-without expecting reciprocation. Help them have as normal a life as possible. Offer to take them on home school field trips, which may just be too overwhelming for Mom to consider. Take them along on outings, camping trips, and other experiences that their family may not be able to have.

 

6. Do not judge or criticize. You have no idea what this family is facing. A child with a disability who "acts out" is not a reflection on the parenting ability of the adults in the family. Dealing with his behaviors is hard enough for the parents ­without having to face peer judgment, too.

 

7. Bless them financially if you can. Understanding, of course, that many home school families are living on one limited income, I offer this advice as a reminder that the special needs family has additional financial stresses. If you can, find a way to do this subtly. Money is the hardest thing for a family to accept. Can you share your tax refund? Can you pass along outgrown clothes or curriculum you no longer need? Do you have a garden the bounty from which you can share? Whatever you pass along that they can use will save them that expense later.

 

8. Serve. Give of yourself.  Prepare a double meal one day a week and deliver the extra portion to this family. Offer to care for the child so the parents can go out. (Note: Unless the family says otherwise, most special needs children function best in their own homes and would do better if you would take the time not only to keep them but also to go to their house to do it. This eases the transition away from Mom and Dad as the surroundings are still familiar.)  Do some laundry for the mother so she has more time for the child. Call before you go to the grocery store and see if she needs anything. Sometimes the thought of taking that child to the store is so overwhelming that Mom will forego the needed items instead of making the effort, or she will wait until Dad is home, and then lose family time in the evening when she runs that errand. Some special needs children require hours of intensive therapy that can be quite expensive. It is possible, however for volunteers to be trained in the methodologies and be part of the child's program. Find out if the parents could use help in a home therapy program, and volunteer to be trained and spend regular time as a therapist in that program.

 

9. Remember spiritual gifts. Use yours, and encourage the parents to use theirs. Long before that child was born, these parents had gifts and abilities that they used in service to the Lord. Find out what their gifts are, and find ways to encourage them to use those gifts. Work beside them; encourage them to   be more than just the parent of a special needs child. Use whatever gifts you have to bless the family.

 

10. Help at church. Strange though it may seem church is one of the most difficult places for a family with a special needs child to go. A child in "meltdown mode" in a public place can always be whisked away to the car and removed from the situation. Mom can return later, hoping that nobody who witnessed the event is still there to recognize her. There is no anonymity at church and no hope for returning unnoticed later.

 

Classes are not always prepared for these children, not because teachers do not want to be, but because they have no experience with these issues. Staffing shortages can also strain the ability of the children's ministry to provide enough people to help with a high-need child. Offer yourself as a partner in bringing this child up in the training and admonition of the Lord. Salvation is for him, too. He needs to hear the Word. Be a part of a positive experience for him. In the process, you will also be giving those parents a break they really need.

When friends of ours made a covenant with us several years ago to be involved in our son's spiritual training until he no longer needed extra support, it freed us to worship in a way we had not been able to since be became ill. If these friends were not with our son in class, they had his nursery identification card and watched for his number on the call board. We did not have to think about whether he needed us. They were the first line of call if they needed something.  Only if they could not resolve his problem would they come get us in church was a major factor in our own healing as we have worked through the tough spiritual issues that accompany parenting a child with special needs. 

 

Encourage other children to interact with this child, also. Our son has friends with whom he has been in the nursery since infancy. They seem to know he is different, but they do not care. They love him, and we are so thankful.

 

So there you go.  A long list, but very informative.  One of the things I’ve learned in caring for Ryan is that many people think you need some sort of special training or knowledge to help.  You don’t, you just need a loving heart and a willingness to listen and act.  And really that is nothing new, it applies to most things in life, our marriages, friendships, and workplaces.  If you would like to know more about Ryan and his story, you can visit his webpage by clicking on “Ryan's progress” in the tabs.

 

Have a great night!

 

 ~J