Navigating Through Life with a Child with Special Needs
by Ande Frazier
April 11, 2019 .3 min read
Finding out your child has a disability brings about both challenges and opportunities. Getting adjusted to how life will be different than what you may have expected can be the most challenging part of the initial diagnosis. There are many things to consider during this time.
In a recent interview with Suzanne DiBrino spoke about some of the most important considerations for parents when navigating life with a child with disabilities.
DiBrino is a mother of a daughter with a rare non-inherited genetic postnatal neurological disorder called Rett’s syndrome, which almost exclusively occurs in girls and can affect their ability to speak, walk, eat, and even breathe.
Here are some tips she shared with us:
Advocate, Advocate, and Most of All Advocate
No one can perform the role of advocate better than yourself.
There will be many people in your child’s life that will have their best interest at heart and will want the best for your child, but no one can do that better than you.
Don’t be afraid to ask questions and when you are getting answers that don’t make sense, ask different people. Many times there are services and opportunities available but not offered merely because a parent hasn’t asked. Keep in mind that advocating may include asking for what you and your family need in addition to specifics related to your child with a disability.
There are many resources available to families and individuals to help them adjust to the changes they will be experiencing. These resources can not only provide support but also can guide you through the maze of services and care options.
Plan Ahead and Review Often
There are many things a parent has to plan for throughout the different stages of a child’s life. When a child has a disability, there will be on-going considerations that will need to be addressed.
If your child is under the age of two, there is typically early intervention services available, although some services are difficult to come by if you live in a rural area. As your child enters school, an IEP might be appropriate so that your child gets the services and care needed to attend school.
As a child reaches the age of majority, then a new life plan should be considered to include what life will be like after school; this should consist of employment options, living considerations, community, and family support. In addition to that, financial concerns regarding the ability to provide care if you or your family is unable to and your child’s eligibility to receive the most benefits possible must also be addressed.
You will want to maximize the benefits and services your child can receive; therefore planning is paramount. This type of planning requires someone to specialize in special needs planning. Look for someone who has expertise in this area such as the ChSNC designation offered through the American College for financial advisers or attorneys who specialize specifically in this area.
It is difficult to take care of someone else if you have depleted yourself. Suzanne remembers that as she was working through the initial stages of her daughter’s diagnosis, a doctor from John Hopkins asked her how her marriage was doing. It is not uncommon for many couples to divorce when the stress of having a child with a disability is part of the dynamic. Self-care means not only taking individual time for yourself but also time with your partner, friends and other members of your family.
After this doctor brought this up to Suzanne and her husband, they made a vow that “this would not break us." They agreed to always take one vacation a year just the two of them, along with regular date nights. In addition to that, each of them plans one weekend to spend with friends to get some time to recharge and relax.
Taking care of yourself can start with short walks, meditating for a few minutes each day or getting a massage once a month. Regardless, scheduling these self-care appointments with yourself will help you do them.
There are many challenges when it comes to having a child with a disability, but no matter what, there is always an abundance of love. By looking for the happy moments, small bursts of joyful interactions and the incredible love you have for your child, anything is possible.
Ande began her 20+ year career as an adviser and quickly realized that many people weren’t taking into account was how emotions play a huge factor in financial decision making. Leaving behind her practice to focus solely on educating both advisers and consumers alike, she became an expert in behavioral finance. Author, speaker, thought leader, and money educator, Ande is helping women to take control of their money.