For me, the hardest thing about being a parent to a special needs child is watching Caleb, our son who was born with VACTERL, go through what he has gone through: a NICU stay, four surgeries, numerous hospitalizations and ER visits, countless specialist appointments, lab draws, radiology tests, daily medications and treatments, therapy, etc. All in 21 months. He has a lifetime to go.
Hands down, the second hardest thing is watching his siblings, sisters Ava, 6, and Elle, 4, go through this whirlwind that is now our new normal. While my hope is that it makes them more resilient, more kind, more accepting and understanding of others who are different than them- there have been some brutal moments, days they have struggled, tears, anger, resentment, and there is no denying it has had a lasting impact on them.
As mom to them all…you feel helpless, you feel like a failure, you question your abilities, your heart breaks for them, and you get angry that the challenges of special needs ripples like a tidal wave through your family.
Thankfully, there is help and lots of it. It takes a village, indeed.
- The NICU staff- from our nurse to our neonatologist to the social worker- all asked about the girls and provided guidance on giving them age-appropriate explanations. They also referred us to Hand to Hold, the parent organization of Preemie Babies 101, which hosted monthly sibling Sundaes and had resources for sibling support including a book list and online articles. Child life services at our local children’s hospital also gave us advice and resources for siblings of children with special needs.
- Our pediatrician group was very aware of our situation, not only helping us keep Caleb healthy, but helping us all stay healthy. Everyone, from the front desk to our nurse to the pediatricians and nurse practitioners all asked about and doted on the new big sisters. They answered questions about Caleb, assuaged their fears, and gave them special attention.
- Our pediatrician, along with word-of-mouth, is how we found our counselor (a state licensed psychologist who specialized in art and play therapy). I compiled a list of recommended counselors and called each one to ask about their experience with siblings of special needs children as well as experience with young children. Our insurance was difficult to work with but eventually with the help of our pediatrician and case manager, we were able to have the sessions partially covered. They had several sessions, both together and separate, where they could share their thoughts and feelings and she could discern what was causing them stress or anxiety. It is something I wish I had done sooner.
- Their teachers where also excellent partners. They followed our day-to-day journey through my blog and we had frequent communication during critical moments like unexpected hospitalizations. We travel to Cincinnati, Ohio from Texas for much of Caleb’s medical care which means Caleb and I missed months at home that first year. Their teachers provided stability and security in those classrooms, in the school routine and normalcy. I appreciated how they were open to hearing them when they wanted to talk about what was going on, how they loved them, and how at school, the focus was on them and learning, not their brother.
- At home, we worked through Lorriane Donlon’s The Other Kid. She is the oldest sister to two special needs siblings. It gave me a way to talk to them about and express their feelings and concerns. She has some great resources listed on her website too.
- Through her website I found The Sibling Support Project. While we did not make it to a workshop, their article, “What Siblings Would Like Parents and Service Providers to Know” opened my eyes and brought me to tears. It reminded me that siblings will be in the lives of family members with special needs longer than anyone. ANYONE. Their list of 20 items important to a special needs sibling I have tucked away as it helps me understand and focus on their special needs, not only Caleb’s. Practical advice on acknowledging their concerns, behavior expectations, communication, and one-on-one time are covered. They also have various support groups and other publications on my to-read list.
- Meeting other special needs families has also helped. VACTERL is a rare condition, but we have met one other family in our area whose oldest daughter has VACTERL and is around the girls’ ages. We also are friends with many families who have a child with special needs. Though they all are not VACTERL families, it helps them understand that our family is not that different, that being a sibling to a special needs brother or sister is more common than you think, and that we all are special in our own way.
- Support is key. We are lucky to have family, friends, our church, and our work supporting our family. Often they feel as lost and helpless as we do when it comes to answering the hard questions or during a challenging time. More often though, they love on them, give them attention, spoil them a little (from stickers to fun outings), listen to them, pray for them, and pray for us. Kids feel that love and caring as much as we do.
Being a parent is hard. Being a parent to a special needs child and normal siblings has its own unique challenges. I hope that this list is a good starting point in meeting them. If you have other resources or advice on parenting, please share them with us.