All posts in this series are dedicated to J and Y, our dynamically disabled duo.
"And once our eyes are opened, we cannot pretend that we don't know what to do. The one who holds our hearts and minds, knows that we know, and holds us responsible to act."
-paraphrased from Proverbs 24:12.
Thanks for opening my eyes, babies. You both have my whole heart and mind forever and ever.
1. What resources are there for kids and parents?
So, this answer is specific to our city (Columbus, Ohio) so I can't speak directly about other areas since I don't know what resources they have there, although I'm assuming other communities has similar stuff, especially near a city. Our city has a whole bunch of useful resources for disabled kids and their parents. Here are just a few major ones:
Nationwide Children's Hospital: It's absolutely a luxury that our family lives less than 10 minutes from an excellent Children's hospital. This means that scheduling specialist appointments, therapy etc. is not stressful and I can easily fit those appointments into our day to day life.
Columbus Parks and Rec Therapeutic Rec: During non-corona times, our city's parks and rec department has incredible programs for kids with disabilities (and adults!) There's adapted sports throughout the year and they run an after school program for middle and high schoolers that's only like 45 bucks a month. There's also a summer camp that is so inclusive and wonderful it makes me cry to think about how we missed it this year.
Medicaid provider hours: We haven't utilized this option yet because right when we were looking into it, Corona happened. Basically, your doctor writes a script for your child to get a few hours a day of assistance in your home. The provider is paid through their medicaid insurance. You have to be home while they're there so it's not quite like babysitting, but they do personal care stuff like bathing and dressing, medical stuff like g-tube feeds, and also just hang out with your kid. We will be using this option for Julian in the future to get occasional breaks from the bath time workout, and get him some more one on one care time that we've added a little one.
Franklin County Board of Developmental Disabilities: The caveat about this resource is they take A LOT of advocating and arm twisting to actually do anything, but once you get it set up they can be clutch. We are working with them right now on getting a porch lift installed for our house. They can pay for home modifications and up to 15 hours of additional play therapy a week outside of the hours covered by insurance. Also they get your kid on a wait list for waiver so that their services as an adult will be covered, which is a must.
2. How have you found support? So many ways! Instagram is one of my favorite ways to find and network with other parents whose kids are similar to mine. We've also made friends with some of Julian's classmates and their parents, and the families of my disabled students have all been so sweet and supportive of me and my kids! Most people in the disability community are so welcoming and just surround you with support and solidarity.
3. What does it look like financially to adopt a child with disabilities from the foster care system? Pretty damn comfortable honestly. Kids waiting in foster care who have disabilities receive a higher monthly stipend amount than typically developing kids (usually over a thousand dollars a month) and they retain a portion of that stipend after adoption. We've saved up for so many items for Julian with that money like a special seating system for the house and an adapted van with a ramp for his wheelchair. Plus after a child with disabilities turns 18, they will continue to get monthly support through Social Security. Children adopted from foster care with disabilities also keep their medicaid, so we never have to worry about expensive doctor or therapy bills which is great. Not to mention that the whole adoption is free!
4. How has it changed your daily life? How has life changed the most? So, some of this answer would be specific to adding a kid with mobility challenges because that's what I have the most experience with, and to that I will say: adapt and conquer. Anything that I used to love doing with my foster sons who could walk and were more independent, I have been able to find ways to do with Julian too. Does it sometimes take extra creativity and physical effort? Yeah, but it's worth it to get to see him have adventures. Example: I used to love long bike rides jogging alongside my foster sons listening to music. Now I enjoy long runs pushing Julian in his specially adapted jogging stroller. I used to love taking my typically developing kids to a kid movie and getting popcorn and treats. Now, Julian and I (pre-corona of course) invite all of our friends from the disability community to join us for the AMC theater monthly sensory friendly films. We get to watch a kid movie and eat snacks and be together, and Julian can bounce on the movie theater chair and scream with joy when he hears the music, and nobody can say shit because the event is for people who can't sit quietly through a typical movie showing. Honestly, our adapted versions of activities are often more fun than the old versions.
As far as how my life has changed, having a disabled kid has changed it in so many ways. I'm healthier and stronger now from all the heavy lifting of caring for J, and I love my body without judging it for probably the first time ever. I spend a chunk of time out of every week advocating for him through emails and phone calls, organizing his services and appointments. Those hours are some of most fulfilling hours of my days, and it brings a lot of satisfaction and self-worth into my life to know that I am serving the purpose of advocating for my amazing child.
The only other notable change I can think of is having more therapy equipment around the house (special seat, giant therapeutic bed, wheelchair parked in the corner, that kind of thing.)
5. What's been your biggest joy? I love this question so much! But it was really hard to answer. There are so many ways to try to put it into words but none of them really feel like they capture the experience. Tiny milestones becoming huge victories for our family. Feeling like I'm in an exclusive club of two because the relationship between a neurodiverse child and their Mama who understands them best is such a unique and special dynamic. Knowing that because of our choice, two less disabled children are growing up in group homes or bouncing around between foster homes.
Seeing the joyful reality of the choice to adopt them every day in our home, as they feel the sun on their faces and splash in the baby pool and cuddle up to me in the evenings and swing and laugh and play and just get to be themselves...
Any sacrifices we make in caring for our two disabled children are minor, miniature, in comparison to the many everyday miracles we get to be a part of because of them.
I hope this was helpful for anyone considering walking this road for themselves. Keep the questions coming! My fervent hope is that more families will read about our experience and step out in bravery for these diamonds in the rough.
Sweet covergirl Faith (4 years old; pictured below) is one of them. She's waiting in Texas for her forever home. Her profile, along with a hundreds of others, can be found on adoptuskids.org.