Note from Kat – Jessica is one of my go-to friends for Epilepsy support – she was one of the first people I reached out to online when I was new to dealing with the diagnosis and the overwhelming information out there. Sometimes, facts say it all … welcome her to the Cafe and helpContinue Reading
A Week of Hope: Comforting Avonte’s Family On October 4, 2013, Avonte Oquendo, a 14 year old, non-verbal student with autism, went missing from his school in Long Island City, New York. Surveillance cameras provided images of Avonte running through an empty hallway and then on a sidewalk outside of the school. He has notContinue Reading
When Kat’s Cafe first began, I was adamant that the site be a place for healing – first for myself and eventually for others when I moved to WordPress and began really exploring what it meant to be a special needs parent. Somehow, over time, blogging lost it’s luster, I didn’t enjoy it anymore –Continue Reading
For us, I think I traced it back a bit … the story goes something like this:
We had one child with special needs and he was adorable and cute and it was overwhelming. Family and friends were all over wanting to help, with babysitting and meals. After the second child, that same family started to fracture a bit. Folks started saying it was a lot to ask them to ‘always’ help. Never mind the fact that we weren’t asking all the time – more folks had been offering to help ’til now after all – now it felt like it was ‘wrong’ to take anyone up on that ‘help.’ We still, however, had a couple amazing folks who were always on our side and always wanted to try and make things easier for us.
After our third child was born, and we now had three amazingly cute kids (I might be biased, but you’ll never convince me otherwise!), it was even harder. Our ‘amazing folks’ had both passed away or moved away. Even having someone stay with the older two when Logan was born was an impossible proposition. Managing a child in the NICU for 6 weeks while still having two children with significant needs at home was difficult. Jim and I did it, but it was hard. We had a few family members who would help in a heartbeat anytime we asked, if they could. But you stop asking after a while because you hate asking the same people for help all the time.
Skipping forward to today, we rarely ask for help, and when we do, sometimes the people aren’t too ‘busy’ with their own jobs and lives to help. When we ask we always feel guilty for doing so. We’re contemplating paying a family member to stay with the kids so we can hopefully have an anniversary dinner and movie out. We don’t qualify (yet, ever …) for respite and finding a babysitter to watch all the kids outside of friends of family is impossible because of the combination of seizures and autism, and finances (let’s not open that can of words!).
The point is, over the years we conditioned ourselves NOT to reach out, NOT to ask for help, and NOT to accept it when it is (rarely) offered.
I’ve written before about how amazing the support for special needs parents is on Twitter, but I’ve noticed that support is becoming more socialized than ever before.
Personally, I focus on Twitter and Facebook, because try as I might, I can’t spend as much time on all the social networks as I’d like (and I MUST have time to pin!). But no matter what network you utilize, there are ways to connect with other parents, reach out for support, and encourage as well as support others in need.
Since I love my social media and all the ways we can help special needs parents too – I’ve been pulling together experts, other parents, educators and others to help explain all the ways social media has changed the way we offer and receive support for special needs parents.