Birthday party invitations are few and far between when you have child with disabilities. My daughter who is part of the SPED program at school has been invited to two birthday parties in the last 8 years. My son who is able-bodied and has a group of buddies he hangs with will get invited to birthday parties throughout the year.
Before we moved out of state from our hometown, it didn’t matter if the party invites came in for her because we had big birthday parties with grandparents, family and cousins. Living in Arizona, we don’t have that network so her parties became dinners with cake and a couple of my son’s friends. Continue reading
When my husband and I relocated to Arizona, I remember telling him one of my goals was to get back in the saddle. I missed it and was determined to start riding again.
Our new town has an equestrian culture and I stumbled across a horseback riding class for special needs kids. I put my riding aspirations on hold and enrolled our daughter who has disabilities. I was nervous the first session, but it was amazing to see her light up. Continue reading
Sensory processing issues was a new term we learned when our daughter’s conditions were finally diagnosed. Her conditions include a lengthy list with sensory processing issues plus developmental delays and intellectual disability.
Sensory processing refers to the way the brain receives messages from the senses and turns them into the appropriate motor and behavioral responses. Continue reading
Managing a blog and being active on social media connects you with amazing people. When I managed my old site, Be Positive Mom, I met many working moms online. We collaborated, supported and cheered one another on as our career worlds unfolded as we grew our families.
Since our daughter’s diagnosis of intellectual disability, I’ve met more amazing people online. The beauty of our internet world is you can find support systems from states away and countries away. People out there are experiencing life’s challenges similar to you. They can help just by sending a virtual hug or some laughter. Continue reading
Meet Kristi, author of Finding Ninee. Kristi writes about what it feels like to be a special needs mom. With a mix of humor and compassion, Kristi started with a memoir that turned into a blog that helps other special needs moms like me.
Kristi shared with us how telling your story can help you as much as it supports others.
Tell us about Finding Ninee and the Middle World.
When my son was two, we had his regular check-up. I’d mentioned that he wasn’t talking, and his doctor told me that was okay. After all, he’d been at home with me and “didn’t need to speak,” as I knew what he wanted. That year, I’d planned a trip away from my son for the first time, and worried whether my husband would be able to care for our son alone. Continue reading
I couldn’t stop staring at two words on my computer screen: Intellectual Disability. After 5 years of doctor appointments, tests and more tests, we had several conditions finally diagnosed for our daughter.
Our journey included two neurologists, two geneticists, pediatricians and development delay specialists that spanned two states. It’d been a long road to diagnosis and after talking with other special needs parents, I learned that’s kind of the norm. It can take several years to diagnose a child who has disabilities. It’s like a puzzle and every appointment or phone call provides a piece of hope you’ll find an answer or in our case answers. Continue reading
Our Parenting Curve Ball – Part I was about the waiting game before taking our girl for an MRI. I was actually a wreck. No matter how much you focus or keep positive thoughts, there’s a reality check that goes through your mind when you are faced with a test like an MRI. At least that was how I felt.
The MRI went well. It actually went very fast that morning which confirmed my theory about how often the anxiousness before something happens is much worse than it actually happening. Continue reading
Sometimes life throws a curve ball and you have to figure out whether to swing or drop the bat to run away. We all handle things differently, don’t we? Since my sister passed away almost 5 years ago, life curve balls are a bit harder for me to swing at. That was a pretty huge life curve back then so I figured I met my quota. Not so. And I realize that was kind of naive of me.
I find that writing is a great way for me to get my feelings out and instead of a private journal, blogging became such a valuable support network for me. I love it because my blog is a way to help support others. Continue reading
Part I of our story left off with a couple of unanswered questions regarding my little boo’s high fever.
Why the fever?
Why had the fever and illness lasted so long?
With medication controlling her seizures and fever reducers working, we were waiting to hear back from three doctors. The CT Scan came back normal… thank God! Next hurdle was the EEG. We were anticipating one of the doctors would tell us the news within the evening. Continue reading