Special needs families prepare all year for school breaks. We have to. The bulk of our budget and resources go towards therapies, activities, specialized babysitters (not just anyone will do), and supports to make it through. We plan around ESY (Extended School Year) and know that without that extra structure, our kids would be at an extreme disadvantage. Although Summer brings fun and sun, it also looms over our calendar and financial planning as a heavy weight. For many who have special needs, summer is the most vulnerable time. Long breaks, if not executed with the utmost care, can result in regression and lasting effects.
What happens when there is an unexpected long break from school or even more, what if summer comes early? For the family with a child who has special needs, the ramifications of such a thing are tremendous.
But here we are at home. There was no month of reading a social story to prepare our children for the extended break. There was no gathering of sensory supplies to throw together a quick classroom. What takes us all year to plan for and agonize over has come crashing in with no warning. Many of us parents find ourselves balancing work with becoming our child’s speech therapist, physical therapist, occupational therapist, special education teacher, and behavioral therapist overnight. There is no “down time” or “let’s chill” time in the world of special needs. Our kids are high strung, thrive on schedules, and need constant direction. For many of us, the only “chill time” is Velcro-ed to a visual schedule for a 15-minute interval that still requires supervision and “directed play.”
Many parents feel ill-equipped to provide the education and supports our special kids need. Although many school districts are going above and beyond to provide IEP’s, worksheets, resources, and websites, the actual implementation of these great tools will take place at home, with the parents. Just yesterday a mom contacted me explaining the great fear she has–her son has come so far and has worked so hard. She’s terrified she’s going to “mess it all up and he will regress.” Regression in the world of special needs can take years to regain. We live in a different time continuum than everyone else. Every day counts.
What about finding someone who will come help during this extended time at home? We have three people currently who are equipped and able to care for our son who has autism when we are not home. Two of those people are family members who live far away. It takes weeks or even months of planning to be apart from our child who has special needs for even a day. Because of the nature and severity of his autism, only a person with special training and a unique understanding of his needs can care for him.
Furthermore, many of our kiddos have compromised immune systems. We love that you might want to help, but quite honestly, it’s not worth the risk. Many of our kids don’t understand being sick and it scares them. It takes two adults to get medication in our kid. Recovery from an illness notoriously takes twice as long since our kids are still getting the hang of blowing their nose and what it means to cough and clear out the “junk”. Sickness is just different in our world so while we would love the help, we must protect.
Our family’s situation is more the rule than the exception when it comes to the predicament that special needs families find themselves in.
There’s so much more that I could share here, but hopefully this paints just a little picture of what it means to be a special needs family during this time. So now, what can you do to help?
Let a special needs family know you care. Most special needs families aren’t going to take the time to explain to you what our life looks like right now. We don’t want to burden anyone. We are also currently working in the trenches. So, send a text or make that phone call. Even if we don’t answer right away, just knowing that you thought of us will mean the world to us. Besides physical isolation, there is often emotional isolation and disconnect between us and the outside world. This has just been elevated to an all new high. Just today a mom of a special need’s child reached out and said, “it’s only day two and I’m already dying”. What if you were the one who reached out to tell her you have been praying for her today? What if you became the bright spot God used in her day to remind her that she has a friend praying her through? What if, because of you, she was reminded that she is not alone?
Drop off a care package. It is estimated that 28% of U.S. children with disabilities live below the federal poverty threshold. According to the U.S. Department of Agriculture, the cost of raising an average child to the age of 18 is roughly $240,000. Autism Speaks estimates that the lifetime cost for an individual with autism and or intellectual disabilities averages $1.4-$2.4 million. The difference is staggering and there are so many reasons. Financially speaking, it is possible that some special needs families will struggle immensely during this time. Medications for our children must go on. Supplies for teaching them at home are desperately needed. Many special needs families live in a precarious lurch of paycheck to paycheck and weighing the greatest needs of our children above all else. Drop off some sensory supplies, leave some canned goods and if you find baby wipes or flush-able wipes send them over! Special needs families are not able to go from store to store seeking out toilet paper and bread. It’s just not something we can do.
Pray. Partner with special needs families through the power of prayer. Could it be that God might be using this time to force our society to “Be still and know that I am God” (Psalm 46:10)? If you could, spend some time being still and lift in prayer families of special needs children. Pray for peace to fill our homes. Pray for patience as we maneuver uncharted waters. Pray for provision as our needs are great. Pray for an umbrella of grace for ourselves and our children. Pray for breakthroughs in the lives of our children, because God is able. Pray dear friends! And then, reach out and let special needs families know that you have been praying for them. Prayer is one of the greatest ministries you can offer us.
Seek out a special needs family. Let them know they are not alone. Meet needs if you are able. Most importantly, keep them in your prayers. This vulnerable population needs our attention. Let’s be the hands and feet of Jesus!
This article about Special Needs Families originally appeared here.