This. Changes. Everything.

kid in wheelchair in garden
The kids at Longwood Gardens – part of Philly’s Art Reach Access program

Going from a couple, or even a family, to a special needs family is a swift metamorphosis that typically knocks you off your feet. You enter a completely new world, in which you understand nothing. It’s a new language, a new culture, and until you find your new community it’s a world in which you feel overwhelmingly alone.

I’ve only been in this new world for three years, but I’ve learned so much along the way: so much that could’ve made life easier had I known it sooner. Now I’m sharing with you in the hopes that you don’t have to find these things the hard way!

Find Your Community

People are probably the most important resource you’ll ever need. And the hardest one to find, if you don’t know where to look. My initial approach? Hope I ran into someone with kids who looked like they had extra needs and then spark up a conversation. Yep. I think I found 0 people that way. When we started a bowel management program, our nurse suggested we follow a poop group on Facebook. Yep. There’s a poop group. Which was my first sign that there’s probably a group for everything. Here’s how to start building your new community:

1. Facebook groups

Start by searching your child’s disability. You’ll find something. There are also several that are general special needs support groups. I’m also a part of a few disability travel groups – because that’s my jam. These people can help answer all those questions that you’re not even sure there are answers for.

2. Blogs

This is another thing that I didn’t know was a thing, until I started my own. Check out this list of the top 30 disabled and special needs parenting blogs. I’m honored to be included in the top 30, but Feedspot actually includes many more! From lifestyle, to parenting, to encouragement, to travel – there is something for every aspect of special needs parenting. Don’t forget, behind each blog is a real person (like me!) – another connecting point.

3. Instagram

Oddly enough, Instagram is the first place that brought these connections into real-life friendships. You can search hashtags, like “specialneedsfamilies” or “spinabifida” or “autism” and connect with people who get you. We’ve met families just like ours – and we’ve had real life play dates with people who get it! AH-mazing!

4. Parent to Parent

Parent to Parent will connect you with another parent in the same boat as you. You can be matched by having children with the same or similar disabilities. Finally, someone to both commiserate and celebrate with!

Perks

This is a weird way of putting it (like the people who tell Jaden he’s so lucky that he can sit back and relax while everyone else has to walk… ummm… not sure a wheelchair is a perk); but, you need to know the things that are available to you because of the need or disability.

5. Free stuff

Check out this list of free stuff, services and grants for kids with special needs. Did you know that there are wish-granting programs that are open to children who are not terminal, but have ongoing illnesses or disabilities? We also have free admission to all national parks.

6. Free and discounted admission

kids with mummy
Checking out some mummies at Penn Museum with $2 admission

In addition to free National Park access, many museums, galleries, and gardens offer discounted admission with an ACCESS card. Most are only $1-$2. All of these discounts cover the card bearer and up to three guests. Musuems for All covers a wide range of attractions around the nation. There are also many state or city specific programs that significantly contribute to the lists of places you can visit for minimal costs, like Philly’s Art Reach, which gives $2 admission to cultural sites across the city. Here’s a partial state-by-state list of zoos, aquariums, children’s centers, and other places that offer free-$3 admission with your ACCESS card. Definitely check out the places near you, but you can also look for great vacation activities! We do a science center on most trips, and only pay about $5 for the entire family.

7. Free or extended parking

This varies by city and state, but always google handicap parking and your destination before you park. In Nashville and Cape May we parked for free. At home in PA we get an extra hour in addition to the meter allotment. Always check!

Back doors

kid on crutches at chocolate world
Hershey’s Chocolate World is a Certified Autism Center

These aren’t quite perks, more like workarounds. There are so many things that you think you won’t be able to do anymore, but these are the ways that you’ll be able to continue do them – just in a different way.

8. Certified Autism Centers

If you’re looking for something for the sensory sensitive, this is a good starting place. Certified Autism Centers can be found in museums, aquariums, zoos, and even amusement parks. These places go above and beyond to find a way to make sure everyone can be included.

9. Special Olympics and Adaptive Sports

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Chances are actually really high that your kid can play a sport. We’re in a smaller town, so we don’t have as many options, but we can still do ice hockey, baseball, and a couple other recreational sports. Special Olympics has an incredible reach all around the globe. To qualify, you must have an intellectual disability (stand alone or in addition to another disability). My son doesn’t have an intellectual disability, which is how we learned about Adaptive Sports. Even if you’re not on the locations map, it’s worth contacting them. They were able to help me find little league challenger – a local opportunity, even though it wasn’t on their map.

10. Inclusive Playgrounds

Playgrounds don’t have to be stressful. Here’s a list of inclusive playgrounds around the U.S..

Travel and Adventure

Accessible and inclusive travel with kids is my corner of expertise – and another area that I thought I was totally alone in until I started! Turns out, I’m not the only one who won’t let special needs or disabilities keep me from exploring.

11. Disability Travel Blogs

This is a thing! Not many are family focused, but here’s a great list of the top ten disability travel blogs (you bet I’m on this list, too!).

12. Accessible trails

We don’t hike less: we hike differently. Rails to Trails has flat trails that network around the United States. You can find similar ideas in Europe and around the world.

13. Apps

In addition to the trip planning apps I use, you can search attractions in any destination for accessibility and sensory friendliness.

Ask Everyone. Trust No one.

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Ok, I don’t actually mean anything nearly that extreme. Some of the best advice I’ve received is:

14. Welcome second opinions

Ask your new community – no matter how bizarre the question feels. Consult a different specialists, even if your current one rocks. We’ve been to three different major hospitals, all with excellent Spina bifida clinics. At each one, we’ve gained new insight that has made a big difference for our son’s health. I’m making it routine that each year we meet a new specialists.

Take a Break

There’s no way to explain to a non special needs parent just how draining this job can be, and no need to explain it to anyone who knows!

15. Get respite

I cannot even begin to tell you just how important it is for both you and for your family for you to find time for yourself. This feels impossible, but it needs to be a priority. There are even discounted and free ways available for you to get away on retreat.

You got this!

It’s a steep learning curve, but I hope these resources rock your world like they did mine! Did I miss any? Have you discovered any life changing resources that I’m missing? Please share in the comments or shoot me a note! We’re all in this together!