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.
I was trying to comprehend her other conditions that include chromosomal disorder, tremor, sensory processing issues, ADHD and developmental delays. It was those two words that stung a bit. I was stuck on them.
I started researching and learning as much as I could. I still have so much to learn. I imagine I’m no different than other moms and dads who feel alone, scared and unsure of what the future holds after learning all of the conditions we face. We finally have a new direction for treatment and support.
The old school definition of intellectual disability and views are changing through compassion and understanding. I’m grateful for that and the IDEA. We’ve met amazing special kids, parents and teachers because of our daughter. People like us who want to give their children the best despite the challenges ahead.
Instead of focusing on those two words with despair, they’ve taught me a different way to look at our future. They just simply mean:
- My husband and I are her advocates, protectors and supporters now more than ever.
- She learns at her own pace and we’re adapting to her learning style.
- She’s teaching me compassion and how she views the world in her own way.
- Some days are better than others and the bad ones give way to good ones.
- It doesn’t matter what other people think.
- Sometimes friends and family just don’t get it. That’s OK.
- People say inconsiderate things and it’s better to just move on.
- We have to explore every therapy and support option possible for her.
- The stereotypes of yesterday don’t apply to today.
- There’s so many resources out there. I’m researching constantly and connecting with parents like us.
- I need to take time for myself so I can help her. Exercise, decompress and sometimes enjoy an that adult beverage.
I learned when my sister was diagnosed with ovarian cancer and then passed away from it that life doesn’t always go as planned. It’s unpredictable. It can change in an instant. That can be scary. My sister also taught me how a good attitude can help you rise when you fall. A bad one will just hold you back. It’s a choice how we move forward.
I don’t know what our future holds. I know we’ll be with her every step of the way. We move forward with our unconditional love, support and as her strongest advocates because that’s what parents do.
Stephanie Lema 
The whole no diagnosis with a diagnosis is hard… my son just turned seven and still is “developmentally delayed…” the school will need a more specific one by December of this year. I suspect it’ll be speech and language but how do they choose? When I get sad about it all, I think about when I was a kid and how I don’t really remember anybody having a delay at all… I think they went to other schools back then. So progress? Also huge hugs, mama. It’s a hard thing but I promise you’re not alone!
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Thank you Kristi! I hope your December meeting goes well. I go into those meetings with my list of questions so I don’t forget anything. I get sad, too and then she says or does something that makes me realize she’s pretty happy moving along at her pace. It’s good to know we’re not alone and hugs to you, too!
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