“Every day was a struggle. Every day was a fight for her life,” Amber, mother to Elisabeth, recalls. Elisabeth was born with a rare genetic condition and spent the first 15 months of her life in intensive care. It was recently estimated that 90% of babies born with her condition don’t survive their first year of life.
Elisabeth, currently a happy and spunky toddler, is receiving therapies in the family home under the Early Intervention system. Now that her third birthday is approaching, her parents are anxious about her upcoming transition to preschool. “She’s finally stable and in such a good place. We don’t know what services the district is going to offer… and how a nurse at the school might react if something happened, like if she had a seizure.”
At Listen and Talk, we recommend that parents write an “introduction letter” to their school district. It can be written in the voice of the child or the parent, and can help bring to light the child’s unique strengths and needs. An example from Elisabeth’s letter is: “I don’t like blankets or socks, but I don’t mind my orthotics. I love being around other kids, and want to be involved in what everyone is doing.” By sharing an introduction letter, the district can “meet” the incoming student, and learn about his/her experiences in a personal, positive way.
I asked Elisabeth’s family how they felt writing their letter. Her father Mike said, “I’ve never put things into her perspective like that. It made me think, ‘I wish I would have started journaling earlier.’”
Elisabeth’s mother Amber has learned so much about her daughter’s diagnosis and health, their doctors have asked her if she has a medical background. Her response? “No, I have a Google PhD.”
I asked her what she would share with another parent of a child with complex needs. She said:
- Do your research. Learn about your child’s diagnosis and how it might impact him/her.
- Ask questions. Don’t be afraid to ask your doctors or health professionals questions. Ask follow-up questions, or ask them to explain it again, if you don’t fully understand how they explained it the first time.
- Look for a parent support group. “Find other parents. They’ll tell you what has and hasn’t worked for their child. They’re the best source of information.”
- Keep a calendar with detailed notes. Write down your child’s symptoms or behaviors to help find patterns or note concerns. “Spending 5 minutes each night writing notes in our calendar takes time out of the day, but we can’t live without it. We bring it to every appointment. It helps track what’s going on with her-it helps us notice when something is not right, and ultimately helps our doctors provide better care.”
- Be prepared for their appointments. “When I told them, ‘I’ve been tracking her fever over the past 36 hours,’ versus, ‘Well, I think it’s been a few days…’ the doctors took me seriously. They didn’t just dismiss me as an over-anxious parent.” Arrive to appointments ready to address your questions and concerns, since your time with the doctor is often limited.
- Ask questions (again). You don’t know unless you ask. Amber and Mike asked if they could come to the first few days of school with Elisabeth. They also asked if they could meet her school nurse, and what the school’s policy was on attendance during cold and flu season. They were pleasantly surprised by how willing the district was to work with them and respond to their concerns.
Elisabeth’s parents are still nervous about sending her to preschool, but they’re excited to see her learn and interact with her peers. Mike’s advice for other parents going through something similar is, “Never give up hope for your child.”
Do you have a child with complex needs? Do you have advice you’d like to share with other parents? Comment on this post or write to me at [email protected].