By Shanna Smith
Moving can be an exciting time—job promotions, opportunities to see new places, new adventures on the horizon. Moving with children can still be very exciting; but, definite challenges begin to emerge.
Moving with special-needs children, however, can bring on enough anxiety to make you rethink the whole idea altogether.
My husband and I recently experienced the chaos of moving from Arkansas to Texas…with three children..the youngest being our 3-year-old with spina bifida. Now, almost eight months later, I am happy to report that we made it through the gauntlet, mostly intact.
Moving with a special-needs child may seem like a bit of niche topic; but, the reality is, according to Child and Adolescent Health Measurement Initiative’s 2009-2010 National Survey of Children with Special Health Care Needs, 23 percent of households in the U.S. have one or more children with special needs. This means we aren’t as few and far between as you may think.
So, for the benefit of those of you who have special-needs children and who happen to be looking to shift your lives to a new location, allow me to share some advice and encouragement as you begin this journey.
Once you have peace about where you are going, pray and know that everything will be okay. Take a deep breath, and don’t let the details overwhelm you. Things may not line out as quickly as you wish, but they will line out eventually. Moving, in and of itself, is time consuming. Try not to stress about getting every detail lined out the day you move in to your new home. For a planner, list-maker, type-A person like myself, this is a challenge! I had to remember that things didn’t fall into place immediately when my child was born, either. Evaluations, paperwork, applications…they take time.
Consider ordering any equipment you think your child might be needing soon. If your providers are willing, go ahead and get your child fitted for a new set of braces, order that piece of equipment you have been thinking about. Most companies are willing to work with you, especially if you are looking at a change in your insurance plan. In our circumstances, we were leaving a state that had great benefits for children with special needs to a state that only provided income-based programs. We went ahead and ordered a wheelchair for our son before we moved, uncertain of how easily we would be able to get one after the move. Being that we met our neurosurgeon seven months after the move (one of the key players on our medical team), I think it was a wise choice to place that order when we did.
Look into government programs offered in your new location ahead of time. Most states have basic information on their state Department of Human Services websites, often including applications for programs to assist in providing care. There should be contact information listed, as well. I highly recommend you write out a list of every question you can come up with and speak to a representative. He or she might not have all the answers, but he or she can refer you to other departments you might not even know about yet. You probably have a great network currently. Take your list to the doctors, therapists, and case workers you already know and love. They might have insight for you!
CONNECT WITH OTHERS
Do some networking! No matter what you are facing, you are not alone. There are other families out there like yours. Some of the most helpful advice I have gotten, hands down, was through Facebook pages created for people with spina bifida and/or their families. You have access to so many other moms, dads, and individuals who are dealing with or have dealt with the same questions and situations you are facing! There are organizations created to support many different needs. The Spina Bifida Association, for example, offers a plethora of ways to connect and be informed. Search for opportunities to connect with others who have similar circumstances. This will help you find the best doctors, specialists, therapy clinics, adaptive sports clubs, etc. Trying to figure it out alone can be overwhelming…so let others give you input. If you are having trouble finding organizations through a web search, your hospital, therapy clinic, or case worker can probably lead you in the right direction.
HAVE CONFIDENCE IN WHAT YOU KNOW
Know that you will probably run into different approaches and theories on treatment than you have become accustomed to. I could take my son to see 10 different specialists about the same issue and get 10 different approaches for treatment. Each doctor would be presenting their best plan, but they all have different backgrounds, different training, and different ideas. Trust yourself. Research. Pray. If your current people are as awesome as ours were, text or call them when you need their advice. Do what you think is best for your child. You know him or her better than any medical professional ever could.
Lastly, if you have down time before therapies get requested, approved, and scheduled, like we had, try to embrace the sweet moments of blissful peace before your normal chaos starts up again. It’s okay to enjoy the break. It won’t happen often. The pressure mounts as you see time pass without the normal activities you know benefit your child. Remind yourself that ‘this is temporary.’ The best thing your child will get out of this move might be all of the extra, unscheduled time to just love on his family…and I have a feeling it might just be the highlight of the move for you, too.
If you are considering moving to a new state, I absolutely understand the anxiety you feel as thoughts of medical suppliers, finances, hospitals, clinics, support systems, insurance changes, and so much more filter through your thoughts almost constantly. I hope you find encouragement and peace from this mama who has made it through the transition stronger than ever. You and your child will grow in different ways while you are working out all the kinks. I know good things are in store for you. Try to enjoy the sweet in-between time as much as you can! I kind of miss it already!