The Special Needs of Families with Special-Needs Children

Special Needs SonAt six-months-old, my son was classified as a “failure to thrive” baby. Lack of weight gain, weak muscles, and developmental delays were causing me and our family doctor concern. Unable to pinpoint the cause, our regular pediatrician sent us to a variety of specialists to search for answers.

Enter the nutritionist, occupational and physical therapy programs, and visits to specialists and hospitals for exams and tests, tests, and more tests in the hopes of finding an explanation. Taking him to his appointments became my full-time job. The therapists trained me how to use playtime to work on his motor skills. The nutritionist had me cooking most of his food from scratch to avoid gluten and other allergens that might be causing his issues. And the doctors poked and prodded him endlessly. All the tests were inconclusive, which only meant more appointments and tests.

It was the hardest time of my life. The emotional struggle of worrying about my son, what the delays meant, how they would affect his life, if he would recover, was exhausting. Add the demands on my time—getting him to his appointments, cooking from scratch, making sure to get in some working “playtime”—the usual housework and church activities, taking side jobs and part time work to help pay bills and make ends meet with the increased cost of his medical care taking a toll on the budget, and still trying to be a decent wife and mother to my other two children…

Most days I fell into bed at night exhausted on every level. If it wasn’t for the help of family and friends, I might not have survived those years. They rallied around me and my family, helping out in ways that may have seemed small and simple to them, but were the reason I was able to keep pressing on day after tumultuous day.

If you know a family in the midst of a struggle in caring for a sick or special-needs child, here are eight simple ways to help.

1. Cook a Meal

Let’s face it, many days it’s hard for a mom of healthy kids to put a meal on the table. But when you add doctor visits, therapy appointments, surgeries, or hospital stays into the mix, sometimes it’s nearly impossible. Time to shop and cook were often luxuries I couldn’t indulge. But then I’d experience Mommy-guilt for feeding the kids fast food or processed and packaged food. More stress. I appreciated it so much when people would make us a home-cooked meal. Consider helping a special-needs family in this way. Just remember to ask about food allergies and family preferences.

2. Shop

Taking a special-needs child to the store can sometimes be difficult. In my situation, I had two children eighteen months apart, the older of which was developmentally delayed and unable to walk when his sister was born. That meant I had to carry a child on each hip and a heavy diaper bag anytime I went to the store. I only shopped at stores with carts. One child sat in the cart and the other I carried in my arms, which was challenging to say the least. I tried to wait until my husband had a free night to watch at least one of the kids, but that wasn’t always possible. My back ached for years from lifting and carrying little ones.

In the case of children undergoing chemo, there may be times when immunity is low and a trip to the store is ill advised. In other situations, taking wheel-chairs, oxygen tanks, and other medical equipment along for a shopping trip complicates the process. But groceries are a necessity, so someone has to buy them.

Call your special needs family and ask if you could help by running to the store and picking up some needed items. Ask for a list with brand names and sizes of items if possible so you are purchasing the items they really want and can use.

3. Babysit

If you are a trusted family friend, an offer to babysit would likely be very much appreciated. You might babysit the special-needs child while mom and dad get a needed night out for dinner. Or maybe you could babysit for other children in the household while parents are busy taking the special-needs son or daughter to appointments.

When we were going through our challenging years, I had a six-year-old and an infant while caring for my ailing toddler. It was not uncommon for me to have to bring all three children along for therapy appointments and doctor visits. Keeping everyone happy and appropriately occupied was a challenge that added to my stress. I so greatly appreciated the days when I had someone to help with babysitting. I felt I could focus on my son’s needs and on the instructions and information being relayed by doctors and therapists who were working on our behalf.

4. Gas Card

Caring for a child with special needs often means extra time in the car. Trips to the doctor or therapist are more frequent. Maybe the family is doing weekly road trips to a children’s hospital for treatments. That means extra gas.

If you can’t offer physical help due to time or health restraints, but you have a little room in your budget, consider buying a gas card. Look for a station close to the family’s home so they don’t have to go too far out of their way to use the card. I promise they’ll appreciate the gift!

5. Raise Funds

Modern medicine produces amazing results, but they often come at a staggering price. A few days in the ICU can come at the price of a few months’ salary. Induction chemotherapy and the procedures involved in that treatment can easily run up to fifty thousand dollars in a few weeks’ time. Even if a family has insurance, the 10 or 20 percent they are required to cover becomes a heavy burden. If you have the time and inclination, organizing a fundraiser would benefit the special needs family and alleviate some of the stress and strain that comes from worrying over financial concerns.

Maybe you could organize a church-wide or school-wide garage sale. Invite people in the community who know the child to go through closets and storage areas and bring items they are not using to a central location. The sale will bless the child’s family with needed funds, and the donators gain a cleaner home in the process. Win-win.

Other ideas for easy fundraisers are collecting aluminum cans, placing donation jars in local businesses, selling food or candy items at a community event, or taking up a donation at a largely attended school event such as a football game at the child’s school. Talk to school officials and local business owners to solicit help and get the whole town involved.

6. Home or Lawn Care

There are only 24 hours in a day and when a child needs more than the usual quota, the less important stuff goes undone. For us that meant the lawn didn’t get mowed when it needed to. Or the housework had to wait until we were home and had a few spare moments. It was such a blessing when someone would volunteer to come and help out with basic household duties. Having a friend or family member run a couple loads of laundry or dust and vacuum was a morale booster for me. I love a clean, organized home, and just seeing dirt and clutter disappear gave me energy to press on.

When children need treatments or surgeries from an out-of-town hospital, the family may not be home for weeks at a time, so getting some help with lawn care or having someone get their mail or newspapers or push the trash bin out to the curb on the right day is a huge help!

7. Encourage

When life is consumed with worries about a child, sometimes a family or a parent can feel very alone. No one can truly know the worries and fears of a parent of an ailing child. Physical support is so needed, but even more necessary is emotional support for the roller coaster ride of emotions that a parent of a special-needs child can experience.

Stay in contact and make it a point to be a listening ear, empathize and encourage them that they are doing a good job of parenting in a difficult situation, that they are not alone, and that you care. Sometimes just knowing someone else is thinking of them and their ailing child makes the struggle a little easier.

During times of exceptional difficulty, consider doing something extra special for the family, like organizing a campaign to flood the family with cards and letters of well wishes so they know others are thinking of them and praying.

8. Be A Voice

Chances are if the family is dealing with pressing medical needs, they are too busy to spend hours on the phone telling friends and family all the details of their child’s situation, and quite frankly, sometimes having to repeat bad news over and over makes it that much harder to bear. Ask the family if they would allow you to be their voice to the community. Start a Facebook page or email group for extended family and friends to help keep them informed of news and developments.

Facebook or Blog to raise awareness and raise support that will keep the family in people’s minds. And use that platform to make people aware of their needs and coordinate efforts to help them.

~~~

Doctors finally diagnosed my son with a heart problem. Surgery corrected the issue, but the developmental delays and problems he faced as a result continued to need extra treatment for several years. I’m so thankful for the support system of friends and family that walked with us through our difficulties. I hope that sharing about the ways that they blessed us will help you to bless someone else. Together we can make the world a better place!

~ Lisa

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