In Crisis and In Joy – Families of Children with Autism Need Ongoing Support
When Daniel was just two and a half, he was diagnosed with Autism. His parents Pat and Tina Meade would be thrust into doctor appointments, therapies, and a world of uncertainty. Daniel had good days and bad days – but when they were bad, they were really bad.
“I would tell my daughter, grab the dog and go hide in your room until I tell you it’s safe to come out," shared Tina. “We called it CODE RED."
They needed help – often.
“Everyone expressed their concern and our family and friends tried at every corner to help. But many didn’t know what to do – or what to even say to us." But as people who care often figure out – sometimes it’s the simplest things that are most important just to get through the day.
Support came in all kinds of ways throughout the years – the most important being supporting their daughter who was often caught in the middle of staying safe and growing up. Neighbors would include Nicki in outings, playdates, carpools and just time out of the house having fun. “This was so important to us because we knew this was difficult on her too."
Pat and Tina needed respite too – something many parents of children with Autism rarely get – but desperately need. “We had a binder, and five family members and a therapist stay at the house so we could take a weekend away. We didn’t know how much we needed the rest to simply rejuvenate for a minute."
When the family made the extremely difficult decision to have Daniel move into a pediatric residential program for his and the family’s safety, their need for support was even more so. Their heartbreak and anguish was powerful, and friends would deliver meals or a simple card and bottle of wine on the doorstep.
Today, Daniel is 24 and living in a group home in New Jersey, just a few miles from his parents. The journey has been hard and as Tina says, “You can’t know what it’s like until it’s you."
Tina and her family share their story about Daniel to open the conversation about living with Autism – it’s severity – and how much families need real support.
“Had Give InKind been around during times of crisis, I know it would have been a powerful tool to help me organize and get even more support for all of us. I hope families know they are not alone. People really want to help – you just need to give them the right way to do it."
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