Parenting is hard. Special needs parenting is even harder. Trust me, I walk the line between both worlds.
While one parent creatively sneaks veggies into dinner, the other references an occupational therapist’s guide to gradual food exposure for extreme selectivity or uses a feeding tube.
One argues for a hotel upgrade with optimal view and early check-in. The other advocates for a first-floor guarantee with wheelchair-accessibility or mini fridge to store safe meals.
One catches up on emails at the playground. The other monitors crowds and equipment posing physical or sensory challenges and hovers to intervene at the first sign of danger or meltdown.
One chats with her child on the way home from school. The other is met with silence or depends on a device to communicate.
Some parents prep for school with supply shopping and check-ups. Others do that along with lengthy IEP (Individualized Education Plan) evaluations, 504 planning and meetings.
One schedules play dates between sports. The other juggles play therapy, speech and social skill-building groups hoping teams will be in the future or avoids groups all together because seeing “typical” peers can be painful and judgement is worrisome.
Some found their tribes at PTA meetings. Others feel isolated.
We ALL celebrate milestones. But special needs parents celebrate smaller ones and wait… praying for each to come and wishing everything would catch up to the physical growth.
Sure, every child has his or her own special needs. While one requires extra reading help, another’s shyness warrants therapy. Not all challenges are defined as a disability. But each can feel like the weight of the world on a parent’s shoulders. Some challenges are more obvious to outsiders. In fact, of the 650 million people who live with a disability, only 20 percent have a visible disability. That’s 1 in 5 people worldwide or twice the population of the U.S. For instance, one in 59 children has autism spectrum disorder (ASD).
No matter how you see it, parents of children with special needs go the extra miles. Not a mile. Many miles. Their road is filled with more bumps, roadblocks and detours. It’s difficult to know where to turn and who to ask for directions, but, fortunately, here in Northeast Ohio we have valuable resources at our fingertips.
Beyond consulting with family doctors, for ANY concern about your child (with or without a formal diagnosis), Connecting for Kids is a main go-to for programming, discussion groups and other support for families in Cuyahoga and Lorain counties with children under age 13.
If your child is under age 3, Help Me Grow is the Ohio Department of Health’s voluntary family support program, which provides in-home early intervention services to promote healthy growth and development (to address developmental delays, etc.). There is no cost to eligible parents and pregnant women.
- Call Milestones’ free helpdesk (216-464-7600) to pair up with a trained local guide who will answer questions and help connect you with schools, camps, doctors, tutors, therapists, social opportunities, funding and other resources in Northeast Ohio. Visit the website for toolkits and other information.
- Check out these books (my top two picks): An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn (based on the Early Start Denver Model, which integrates a relationship-focused developmental model with ABA (Applied Behavior Analysis); and Autism: The Potential Within (based on the early intervention evidence-based PLAY Project approach). Even if you don’t read them right away, you’ll feel better knowing they’re on your shelf.
- Attend the annual Milestones National Autism Conference June 11-12, 2019 at the Cleveland I-X Center. The recent 16th annual conference was the largest yet with over 1,200 professionals, family members and individuals with autism in attendance and featured nearly 100 sessions to help attendees discover the #SpectrumofPossibility.
Attending this conference shed more light on the special needs journey. In Part 2 of this two-part post, I’ll share what I learned to help any parent go the extra MILES.