A Mom’s Journey into Inclusive Play, Advocacy and Partnership

Inclusive playground visit January 2017.

Advocacy has many meanings. When I think of that word, I imagine protests in the streets to build awareness or a fight to right a wrong with a certain issue. It’s a way we rise up to support people who are under served. It’s how we support a cause to achieve a common goal for the greater good.

Parents with children who have disabilities are the strongest advocates I know. Between medical appointments, school IEPs, state rights and down to daily interactions in the community, we advocate for inclusion, support and compassion. A simple trip to a playground can be a battle of sorts when it’s not designed for all.

Our small town started promoting a new park build with a 10,000 square foot playground in 2016. I was so busy between my kids’ school, the work schedule and life I didn’t think much of the call for community comments. Continue reading

Planning a Petting Zoo Birthday Party for Special Needs Kids

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

Horse Therapy for Kids with Disabilities

Horse Therapy for KidsI love horses. I do. I rode for years with a friend when I was growing up. She was a natural trainer when we were kids and has a successful training business today.

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 and The Morning Routine

Sensory Processing DisorderSequence, lace and bows make little girl clothes cute and adorable. For the little girls with sensory processing issues, cute and adorable becomes a nightmare. It’s scratchy. It burns. It irritates.

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

Break The Parenting Mold

Break the Parenting Mold ContributorManaging 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

The Interviews: What It Feels Like to be a Special Needs Mom

Kristi Finding Ninee-smMeet 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

What Intellectual Disability Means to Me

Baby GirlI 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 II

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

Our Parenting Curve Ball – Part I

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

When The Seizures Wouldn’t Stop Part II

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