NAVIGATING LIFE WITH A CHILD WHO HAS SPECIAL NEEDS 

 BY MICHELE ROSNER

When you have a child with a disability, it's arguable that your life will have an unfair and unbalanced number of issues that cause bone-deep, lingering sorrow. This article is focused on helping you get organized, build your support team, make time for self-care, and seek professional therapy when necessary.

For more than sixteen years, our family has been navigating life with a child who has profound disabilities and complex medical challenges. I've learned firsthand that parenting a child with special needs is physically, mentally, emotionally and spiritually challenging. But, I've also discovered that hope and happiness are attainable at every step of the way.

I'm a realistic optimist, so I know that sadness and grief cannot always be avoided. In fact, when you have a child with a disability, it's arguable that your life will have an unfair and unbalanced number of issues that cause bone-deep, lingering sorrow. But, if you're like me, you don't want your life to be defined by chronic sorrow.

MEET THE ROSNERS: Our family of six includes Julia, our sixteen-year-old who has Aicardi syndrome. Her disabilities include intractable epilepsy, vision impairment, respiratory and GI issues, and significant developmental delays. While raising Julia is different than the journey we expected, my husband and I, as well as Julia's brothers and sister, have learned so many profound life lessons along the way. As we've navigated through the challenges, we've found some valuable resources that have provided insights, inspiration and hope.

This article explores strategies to move closer to the joy and further from the sadness and grief. It's focused on getting organized, building your support team, making time for selfcare, and seeking professional therapy when necessary. I'm excited to share some of the strategies and resources my family and I have used to make our lives a little easier.

GETTING ORGANIZED

Having a child with special needs means that you often have unexpected challenges that need time, attention and energy to resolve. It can be easier to deal with those challenges if you've laid the foundation for the more manageable parts of your life to be running smoothly.

Here are four simple strategies that have worked for our family: 1. Online Calendar: We track all family appointments and activities, as well as the schedules for our daughter's private duty nurses, on Google Calendar. 2. Family Command Center: We have a huge bulletin board in our hallway where we keep a phone list, a supply list for monthly orders, invitations, and other items that we need frequent and easy access to. 3. Go-Bag: We keep a bag packed with everything we need for a day trip or doctor's appointment so we can just grab it on the way out the door. It includes the basics, such as diapers, wipes, and extra clothes. Beyond the basics, we make sure this bag includes those 'just in case' items like an extra gtube extension. 4. Medical Paperwork Binder: For years, we kept a hodge-podge of files and piles to 'organize' the ever-growing mountain of medical paperwork. Now, we have a single binder that includes the most recent medical information. Every month, we archive the older information to a file drawer where we keep the information for long-term storage. 

RESOURCES FOR GETTING ORGANIZED

• Organizing Your Child's Special Needs: Tips & Tricks: Blog post from Organize 365 which includes tips for organizing paperwork, medications/ supplements, kids' schedules and parents' planners. organize365.com/organiz- ing-childs-special-needs-2/

• Get organized: Tips for parents of kids with special needs: Blog post from SheKnows that focuses on tips for organizing your time. sheknows.com/parenting/articles/1006845/orga- nizing-tips-for-parents-of-kids-with-special-needs

• Organized Special Needs Paperwork: Blog post that provides a step-by-step guide to creating a binder to organize special needs paperwork. simplyorga- nized.me/2012/10/organized-special-needs-paper- work.html

• Special Needs Moms Organizing and Cleaning Support: Facebook group that shares ideas and inspiration for organizing and cleaning projects. facebook.com/groups/specialneedsmomor- gainzingandcleaningsupport

• Home Hospital NOT Hospital Home: Facebook group focused on keeping your house looking like a home even when you have a lot of medical supplies and equipment. facebook.com/groups/506291616403397

• Special Mom Advocate 'Printables:' For a small fee, you can download PDF 'printables' for organizing a binder for medical and IEP paperwork. special- momadvocate.com/product-category/printable

• The Sensory Child Gets Organized: This book teaches the parents of kids with sensory issues how to organize and empower their children for greater success at home, at school, and in life. amazon.com/Sensory-Child-Gets-Organized- Distracted/dp/1451664281/ref=sr_1_1?ie=UTF8&qid= 1544985280&sr=81&keywords=the+sensory+child+g ets+organized#customerReviews

BUILDING A SUPPORT NETWORK

Raising a child with special needs is nearly impossible to do it on your own. In fact, a huge part of empowering yourself is finding and accepting help from others. It has taken deliberate planning, creative problem-solving and a clear understanding of our current needs to build our family's support network. Here's a look at our team: Family and friends: I've been a part of the special needs community for many years, and I've often seen families express frustration and feelings of isolation as they become more and more drawn into a world that their friends and family do not understand. Even worse, some feel like friends and family disappear just when they are needed the most.

While there are certainly circumstances where friends and family aren't willing or able to provide the support you need, sometimes they're just not sure how to help. If you have the chance, try to let others be a part of your journey early on. That can help you build a support team that will be essential in the future.

If you have friends and family who ask how they can help, and you're struggling to figure out what kind of help to ask for, try this trick: Keep a running list of things you need. It could be a gallon of milk, picking up a prescription, taking the dog to the groomer, or getting your oil changed. Then, when someone offers to help, ask if they can take care of one or two tasks on your list.

Private Duty Nursing: If you have a child with significant medical needs, private duty nursing might be an option available to you, as it is for us. However, choosing to build a nursing team was not an easy decision for us. We value our privacy, and having a stranger in our home on a regular basis was something we thought about carefully. But, with four kids and two careers, we needed more support. Over the years, we've become more adept at hiring nurses, choosing only those who are great caregivers and meld well with our entire family. Now, it does not seem like we have strangers in our home; instead the nurses feel like extended family.

School: We've explored different schooling options for Julia over the years. At times, it's been a wonderful, collaborative relationship; sometimes it's been a challenge to get on the same page. Since Julia has transitioned to high school, we've developed a homebound program that is a near perfect fit for her needs. She uses Skype to attend some classes from home, which we schedule around Julia's medical treatments and routines. She also participates in field trips and extracurricular activities when she can. This unique arrangement has fostered the development of friendships and inclusion; Julia has her own squad and is an integral part of the high school even if she's not physically in the building.

Medical Team: Julia's medical team includes more than ten specialists, which can be daunting to manage. Our local children's hospital provides a complex care team to help. That team includes a pediatrician who specializes in caring for medically complex kids, as well as a nurse case manager.

We've developed strong relationships with the specialists who care for Julia, building a foundation of trust between us and her doctors that helps us make solid decisions about Julia's care, both when she is healthy and when she's battling medical issues.

Co-Workers/Bosses: My husband and I both have employers that are extremely supportive of our need for flexibility. When Julia was born, we were both working for privately-owned companies that truly supported family values. However, that support and flexibility is a two-way street. We've both spent time working from Julia's hospital room or working extra hours when she's healthy and well. Whenever possible, we meet and exceed the expectations of our employers. That strategy has worked for us – we've both been able to stay and grow with the same companies we worked for when Julia was born.

RESOURCES FOR BUILDING A SUPPORT NETWORK

While your support network may look very different than ours, take some time to think about which of your family's needs are going unmet and brainstorm how you can add to your team to help fill those gaps.

Here are some resources that can help: • Help for Families with Special Needs: An Interview with Louise Bruce about Respite Care: This blog post from Care.com share tips for finding caregivers who can help care for a child with special needs and ideas about when and how to take advantage of this respite care. care.com/c/stories/6611/help-for-families-with-special-needs

• 6 Types of Support Groups for Parents of Special Needs Children: A blog post from Verywell Family provides a guide to finding a support group that meets your needs. verywellfamily.com/support-groups-for-parents-of-special-needs-children-4155146

• How to Support Parents With Special Needs Kids": This blog post on A Fine Parent provides insights that can be shared with family and friends who want to help, but aren't sure what to say or do. afineparent.com/close-knit-family/special-needs-kids.html

• Private Duty Nursing: Providing Personal Care Outside the Hospital: A blog post on Nurses.org that explains how private duty nursing works. nurse.org/articles/private-duty-nurse

• In-Home Pediatric Care: Children Need It and the Law Requires It: This presentation from the American Academy of Pediatrics explains when private duty nursing is required by law. aap.org/en-us/Documents/sohc_in_home_pediatric_care_law.pdf

• Don't IEP Alone: A Day in Our Shoes: This active Facebook group provides IEP support and resources from a special needs mom and advocate. facebook.com/ADayInOurShoesIEP

• AAP Agenda for Children: Medical Home: This overview from the American Academy of Pediatrics provides information about medical homes for children. This resource center provides additional tools, resources, and links to information that will assist families in successfully partnering with their child's medical home. aap.org/en-us/about-the-aap/aap-facts/AAP-Agenda-for-Children-Strategic- Plan/pages/AAP-Agenda-for-Children-Strategic-Plan-Medical-Home.aspx

• Working Moms of Special Needs Children: Tips for Balancing Life with a Special Needs Child: This blog post from Balance Careers provides tips for achieving a work/life balance when you're the parent of a child with special needs. thebalancecareers.com/working-moms-of-special-needs-children-3515737

TAKING CARE OF YOURSELF

Is there a voice in your head telling you that it's selfish to think of doing something for yourself when your child needs so much? I'm not surprised if you're already saying to yourself, "I hardly have time to do everything I need to do; there's no way I can find the time to do things I want to do." While there will be times when you have little or no time for yourself, that is not sustainable for long periods of time.

Over the years, I've learned how to make my own happiness a priority. The better I care for myself, the more I have to give to my daughter and my other loved ones. Two of my self-care priorities include going for long walks while listening to podcasts and making healthy meals.

Your self-care priorities might be very different than mine, but you should have at least one or two ways that you consistently take care of yourself, even when you're busy, and especially in the midst of chaos and high stress.

JULIA'S JOURNEY: Julia was diagnosed with Aicardi syndrome. This rare disorder occurs almost exclusively in females and is characterized by the partial or complete absence of a key brain structure called the corpus callosum, the presence of retinal abnormalities, and seizures in the form of infantile spasms.

The better you care for yourself, the more you have to give to your loved ones. You should have at least one or two ways that you consistently take care of yourself; Here are some resources for self-care: • 55 Self-Care Strategies for Moms With Too Little Time: This great resource has ideas for how you can pamper yourself whether you have five minutes or a full day for selfcare. specialmomadvocate.com/self-care-moms

• 20 Things Every Parent of Kids with Special Needs Should Hear: This blog post from Abilities is a great reminder about how important it is to take care of yourself. abilities.com/community/parents-20things.html

• Just for You: A Daily Self-Care Journal: This book has 365 days of fun and thought-provoking writing prompts developed specifically for caregivers. happyhealthycaregiver.com/product/journal

• Tools for the Caregiver: A workbook for finding yourself through caregiving: This workbook is designed for those in a caregiving position who feel like they are losing track of their own needs and desires. It provides practical advice and journaling prompts to help you get back to yourself. strongvoicespublishing.com/product/tools-for- the-caregiver

• Parents raising kids with special needs must manage their stress: This blog post from Expert Beacon offers practical strategies for dealing with stress. expertbeacon.com/parents-raising-kids-spe- cial-needs-must-manage-their-stress/ 

SEEKING PROFESSIONAL THERAPY

With some studies ( susanellisonbusch.com chronic-sorrow-in-parenting-a-child-with-a-disability) showing that up to 80 percent of parents who have a child with developmental disabilities suffer from chronic sorrow, it's not surprising that many parents who have a child with disabilities could benefit from professional therapy and counseling. However, reaching out for professional help can be intimidating. People often feel embarrassed to admit the need for help. That's changing, but not as much and as quickly as it should. Recognizing that you need help is brave and shows that you want to find better strategies to deal with your circumstances and emotions.

 It can be challenging to find the right therapist for your specific needs and personality type. WebMd has a great article ( webmd.com/mental-health/features/how-to-find-thera- pist#1) about how to find the right therapist for you.

 Once you have a possible therapist in mind, here are some questions to ask them:

It can be challenging to find the right therapist for your specific needs. Some questions to ask a possible therapist:

1. Do you accept my insurance? Can you help me navigate any necessary prior authorizations that might be needed?

2. My issue is dealing with the challenges of parenting a child with special needs. How do you think you could help me with that? Do you have any experience working with special needs parents?

3.What do you think is the goal of the therapy? How will we measure success? 

4.What would I have to do to be ready for the first session?

5.Will I have homework between sessions?

6.What are your strengths as a therapist?

7. Do you tend to lead the session, or follow my lead?

8. If I wanted to bring someone else to a session, such as my spouse, would that be a problem?

RESOURCES FOR SEEKING PROFESSIONAL THERAPY

• How to Find a Therapist: This WebMD article provides an overview of the different types of professionals that can provide counseling as well as a practical guide for finding a therapist that fits your needs and personality. webmd.com/mental-health/features/how-to-find-therapist#1

• Congratulations, We're Sorry: Finding Out That Your Baby Has Special Needs: In this blog post, a licensed marriage and family therapist talks about the emotions many parents feel after learning about their child's diagnosis. therapywithcare.com/Article_SpecialNeedsChild.html

NAVIGATING THE JOURNEY TO JOY

One of the things I've struggled with over the years is the fact that my life is different... different than I expected and different than the lives of most people around me. But, with time, I've learned to embrace my life and recognize the unique gifts I have been given. Finding support from and for special needs parents has helped me navigate the challenges along the way. The following contain some resources that can help you on your journey to joy.

BLOGS

• Bloom: This blog is done by a children's rehab hospital in Toronto, with posts about once a week. It's a nice mix of posts about different kinds of therapy options for kids with special needs as well parent perspectives on different challenges they face. bloom-parentingkidswithdisabilities.blogspot.com

• Different Kind of Special: This online community is focused on providing empowerment and positivity to families who have a child with special needs. You can subscribe ( mailchi.mp/9501aae0359a/joindifferentkindfspecial) to a weekly newsletter for more insights and inspiration. differentkindofspecial.com

• Firefly: This blog sponsored by Leckey features frequent posts by special needs parents and healthcare professionals about the real-life stories, issues and experiences of day to day life. fireflyfriends.com/uk/blog

• Friendship Circle: A blog made possible by a non-profit organization in Michigan. Posts cover a wide variety of topics, including parenting, advocacy and education. friendshipcircle.org/blog

PODCASTS

• Bringing Up Betty: While this podcast has not released any new episodes recently, the twenty-two available episodes are well worth listening to. Host Sarah Evans interviews special needs moms and dads raising children with disabilities, differences, disease, delays and other challenges. bringingupbetty.com/podcast-3

• Special Parents Confidential: This podcast hosted by John Pellegrini takes a "we're all in this together" approach to looking at issues, finding successful tactics, and getting solid advice about the complex challenges of parenting special needs children. specialparentsconfidential.com/about-us

• Unexceptional Moms: In this podcast, hosts Ellen Stumbo and Erin Loraine offer hope and encouragement for special needs parents. While there haven't been any new episodes since 2017, there are thirty episodes recorded. ellenstumbo.com/podcast •

ABOUT THE AUTHOR: Michele Rosner is the mother of four children, including a teenage daughter with multiple disabilities and complex medical challenges. Combining her love of writing with a desire to help others overcome adversity and find more joy on the journey of raising a child with disabilities, she launched Different Kind of Special ( differentkindof- special.com). This online community provides resources and support for families that have a child with special needs.