As parents, we are perhaps the biggest influence on our children’s lives. We are called to shape little lives from our personal life experiences, strength, faith, values, love, guidance, and from a wealth of knowledge. We are all challenged to cope with situations that will encourage and support the growth of our children, not hinder it. But as a parent of a child with special needs, we have to adapt and cope beyond what typical parents face and in ways that are unexpected and unimagined. All of us here at The TTTS Foundation are dedicated, unlike other organizations, in the sense each of us has personally been touched by the effects of twin to twin transfusion syndrome. Through the years, we have connected thousands of families that have similar outcomes or diagnoses. In earlier years, before the huge onset of the internet, we used to mail out personalized special needs packets around the world. Now a days, the internet is a world wide tool for resources and mailing packets of information via mail is a thing in the past. In addition to this website, we also offer a private TTTS Special Needs Facebook group. It is a wonderful, efficient way to reach out to seek guidance and support or to share your own personal story.
Although resources and links attached to each plan of care section below are based for The United States as a whole, it is beneficial to know that each state has their own level of need-based resources available for families with special needs children. It is a general outline for plan of action, but only scratches the surface of resources available for families advocating for their differently abled child.
For those living in other countries, hopefully the section below is still relatable in many ways. Please contact organizations in your country for additional support. Feel free to reach out to me, Cindy Boudreaux, Special Needs Coordinator for the TTTS Foundation, privately as well as we would love to expand our plan of action or resources for all families, in all countries. TTTS effects us globally and we want to offer support and guidance for all families and nationalities. You are not alone, your needs are felt, and your voice for your children is heard.
As a mother to one survivor from TTTS with severe physical challenges, I am here for you. You are strong. Trust yourself, and remember “difficult roads often lead to beautiful destinations.”
Seek Support
Children are diagnosed at different ages – prior to birth, immediately after birth, or concerns may be identified more slowly as the child develops and grows. Common reactions most families experience upon diagnosis include denial, anger, fear, confusion, and guilt. No parent is prepared to hear the news that their child will face challenges. But surrounding yourself with people who can offer physical, emotional and intellectual support can help tremendously. Because most families feel largely isolated having a child with special needs, it is greatly beneficial to feel supported, connected, and understood. Support can come from other parents with similar experience, to trained counselors for families, including siblings, as they are often overlooked in families with children with special needs. They have their own wide range of feelings and reactions to having a sibling with special needs- fear, embarrassment, resentment, and guilt. Offering your other children the support they need can help them have a nurturing and positive outlook on having a sibling with special needs. There are lots of blessings to be gained from having a special sibling and child! Each of your children are unique and the positive interaction they have with each other has the potential for an extraordinary impact on their future.
I would like to add a few things to remember with your circle of support. As individual parents, you will most likely grieve differently from each other and in different stages. In my relationship, it was helpful to accept this statement as it gave me renewed strength and understanding in our marriage and individual expression of our grief. On another note, consider the emotions of the grandparents of your child. Remember YOU are their “baby” too. Grandparents emotions can run deep and wide, reeling from their fears and uncertainties for not only their grand baby, but you as their child also. Communication and compassion can go a LONG way by remembering these little tidbits for your spouse/partner and parents.
Request Information
More than likely, you will feel emotionally drained with multiple doctor appointments and a variety of specialists. It is helpful to write down a list of questions that you, your spouse/partner, or other family members may have regarding your child. Being informed means you will have a better idea of what to expect, what decision to make, and how to best to provide for your child. The more you know can equate to being more capable in dealing with difficult situations.
Some questions may include:
It may be helpful to bring a family member or friend to the doctor visits as well. It is useful to have a different perspective and extra ears listening in case you forget information. With permission, you might be able to record your visits with your child’s doctors or specialists. Request more information if you don’t understand or see eye to eye with professionals. Be confident that you know your child better than anyone else and you are his/her greatest advocate.
Obtain a Second Opinion
If you have doubts with information or the individual providing medical care, seek out a second opinion. You will want to develop a sense of trust with all individuals working with your child and be recognized as a valued contributor to your child’s needs and care.
Laws and Services
There are many public laws and provisions which have been enacted that have had a positive impact on individuals with special needs. It is important for the caregiver or parent of a child with special needs to become aware of these specific laws. Keep in mind, in the United States, each state has their own set of laws and services, some of which are tailored to specific diagnoses. Most often, when a delay or diagnosis is recognized, a child will obtain an early interventionist (available to children birth to age 3) or a service coordinator (3 to adult years). In addition, depending on state availability and severity of the child’s condition, families may qualify for a variety of services regardless of income.
For starters, here are two links to serve as a good overview to help locate government and local disability programs and services in the United States.
https://www.usa.gov/disability-programs
Social Security Benefits
https://www.ssa.gov/pubs/EN-05-10026.pdf
On a global front, The United Nations (UN) and UNICEF work toward worldwide inclusion and protection of rights for all individuals with a disability.
UN- https://www.un.org/development/desa/disabilities/about-us.html
UNICEF-https://www.unicef.org/disabilities/index_65841.html
Programs and Services:
Waiver programs are available, but provisions vary per each individual state where the child resides. Waiver programs can help cover medical equipment (some examples are wheelchairs; specialized braces for hands, feet, or legs; ceiling or Hoyer lifts; and home modifications for accessibility in your home), nursing hours, incontinent supplies, tube feeding supplies and formulas, prescription medicine, or therapies not covered by private insurance.
http://medicaidwaiver.org
Respite services give families a much needed break by having someone capable care for your child so you can focus on self care, date night with your spouse, or giving your other children individual time and attention. It is critical to refuel, free of guilt, as parents of special needs children are in constant caring mode. Putting yourself first doesn’t mean you don’t care about others. It means you’re smart enough to know that you can’t help others if you don’t help yourself first.
https://www.helpguide.org/articles/caregiving/respite-care.htm
BIRTH TO AGE THREE-
Early Intervention focuses on the needs of children 0-3. An Early Interventionist (EI) may be assigned to your child and are wonderful resources to help families transition therapy play skills into the home environment. The EI also serve as a parent-child advocate. The EI can help facilitate other services such as nutritional and health services such as occupational therapy, physical therapy, and speech therapy.
https://www.cdc.gov/ncbddd/actearly/parents/states.html
THREE TO AGE 21-
As children transition out of Early Intervention services, additional assessments and services are provided by the public school system. School related goals and needs are then addressed by special education teachers and therapists. Services are solely covered for educational needs, not medical needs. Each year, the child will have an Individualized Educational Plan (IEP) meeting with school board administrators, the child’s teachers, therapists, and parents/ caregivers to discuss progress from current year goals and objectives and formulate a new set of goals for the upcoming school year as a integrative, comprehensive, team approach.
https://www.parentcenterhub.org/pa12/
AGE 18-
Prior to your child’s 18th birthday, you will want to begin reviewing the legal steps necessary to obtain guardianship and conservatorship documents. These documents are required if the individual is nonverbal or unable to independently care for themselves in their adult years. Once your child reaches his/her 18th birthday, you will need legal documentation stating you are able to make decisions for your child and allowed to not only talk to professionals on behalf of your child, but legally act for his/her needs medically and financially.
Depending on the severity your child’s condition, they may also qualify to receive Social Security Benefits (SSI) which are paid monthly. This benefit is opened to individuals who may have not qualified prior to their 18th birthday due to parents/ guardians income.
AGE 21 and Beyond-
As your child matures and reaches the age of 21, he/she no longer qualifies for school related services. Congratulations, you have a graduate!! After graduation, there are a variety of day facilities and organizations which will help stimulate your young adult’s mind by helping in community projects, jobs tailored to their abilities, and other programs that give individuals a sense of belonging and purpose. Other families may opt to care for their children at home. Nursing and Respite help in the adult years can be a big asset to the individual and family who decide home based care is a better fit for their child.
Some private insurance, if approached and documentation needs are met in a timely manner, will acknowledge the child as a life long dependent and will consider continued coverage beyond the typical age of 26 for the dependent with on going health issues. Ideally it is best to notify the employer or insurer as soon as possible to prevent termination of insurance in case the process exceeds past a specific deadline. On a side note, in some cases, Medicaid and private insurance can be used simultaneously with private insurance being the primary insurance and medicaid as secondary.
AT ANY AGE-
As you formalize a Last Will and Testament, it may be beneficial to talk with a qualified attorney about establishing a Special Needs Trust.
https://www.natlawreview.com/article/understanding-special-needs-trusts
While this is a comprehensive list of helpful avenues to explore to advocate for your child, it is by no means a complete, all inclusive list of resources. Hopefully, this overview plan of action will carry you from the overwhelming grief and confusion you may have first experienced to profound joy, where you can accept and embrace the uniqueness your child brings to your family.
You are not alone. At The Twin to Twin Transfusion Syndrome Foundation, we are here to encourage, support, connect, and empower you to be the best caregiver you can be for your child.
