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.
How do feel about knowing your child will not be self sufficient as an adult and you may be caring for him/her your whole life?
I personally have no worries about this, because caring for our disabled sons brings me a lot of fulfillment, and watching new experiences through their eyes is my favorite. My partner and I hope for the gift of a long old age with them to travel, cuddle and soak up togetherness. However, I also feel like people are misinformed about what adulthood can look like for disabled people. Our sons will receive around 1,200 dollars a month as adults through social security disability income, and will also get waivers through the county where we live to pay for things like care providers. It is totally possible to arrange for supported living in an apartment, adult care facility, or separate area of your family home, if that's what works best for you and your child in their adulthood.
For intellectual disabilities, if your love language is intellectual connection, how do you transition to other ways of connecting?
So much to say here. It's hard for me to make my thoughts come out right on this. First point I want to make is that disabled people are a lot more multi-faceted than people think they are, and that it is totally possible to have an intellectual connection with a disabled person, so when you are considering waiting children, don't let a label of intellectual disability stop you from at least finding out more. You and that child may be a better fit for each other than you think. When I got my first foster sons for example, the youngest was in a special needs preschool program all day and had some pretty significant speech delays. He soon got diagnosed with autism. He remains my only child who was a true reader and book lover, and I spent many happy hours in the library with him, searching for the perfect shark book. I still remember the afternoon he spent drawing a detailed, labeled replica of every type of shark he had learned about (which was like fifty types!) complete with their names and a description of their traits beside each drawing. Kids are more than their labels.
The second point I think is important with this question is that as adoptive parents, it is SO. FREAKING. IMPORTANT. that we don't expect our children to put on the empty suit of clothes we've created for our "dream child" (especially if that dream child is the biological child lost to infertility). Kids who are adopted often have different traits and tendencies than their parents, and it's very important to embrace this so that your adoptee doesn't feel like they're forever the fish out of water in their own family. I'll use our own family as an example: My personal dream used to be to foster and adopt young children with disabilities like Down syndrome or severe cerebral palsy. I pictured these children being quiet, sweet and physically limited so that they wouldn't be able to run circles around me! I figured that they would speak my love language (cuddles) and that having the upper hand intellectually would be nice for me, a control freak. And honestly I pictured these dream children being girls (LOL).
My actual children have all been physical tanks, burly strapping boys with insatiable energy. Even the one who doesn't walk regularly pulls my hair out of my skull and punches me in the face (in an affectionate way). Every single one of them is loud as hell. My teenager was a complete surprise; far from being intellectually disabled he is as smart as the serial killer from Silence of the Lambs (and nearly as devious). He exhausts me, talking circles around my reasoning and never meeting a statement that he didn't want to argue with. His appetite for verbal conversation is insatiable, and his clever mind merged with his trauma has created a constant need for intellectual stimulation in the form of talks, scrabble games, long walks, and late night "strategy sessions" where I am called upon to edit the endless presentations he makes in the Notes section of his phone, in depth PowerPoints that are formatted like a pitch by the CEO of an ad agency but are on topics like "My Young Adult Years" and "Which Used Car Mom Should Buy Me."
My rambling point is this: sometimes, OFTEN, children who are adopted surprise us by being who they are, and it's up to us to meet the where they're at. It might be time to learn some new love languages.
Do you think it's possible to provide enough care for a child with disabilities if both parents work full-time outside of the home?
Um...YES. I provide care for two disabled children as a single working mom. The only type of disability that can prevent a child from going to daycare or school is a high dependency on oxygen, so kids who have a tracheotomy may not be a good option for two working parents who work long hours at demanding careers (still would be doable with medicaid and nursing hours but would be harder). But yes, there's totally options out there. Here in Columbus, Ohio we have multiple early childhood programs that are specifically for disabled kids (Franklin County Board of DD preschool, the Childhood League, and Nisonger Center are a few). The public school system, thanks to the heroic disability advocates that fought for the rights of kids like mine, is ready, able, and most importantly legally obligated to serve children with disabilities. My disabled kids have gone to regular after care programs with success, and our county services have also paid for one on one providers to work with them at their after care programs to provide additional support. Columbus Parks and Rec department also runs an incredible after care program for middle and high school students with disabilities that I have utilized and loved, and they also have a summer camp for kids and young adults. There are PLENTY of options, that being said of course childcare in a working parent home is not exactly a party because there's always setbacks (kids getting sick, camp being closed on the day of a big work meeting, the kid shitting on your slacks on your way out the door) but those are just part of parenthood in general.
What resources are available for full-time child care for a child with disabilities? See above. Also, like I know society makes it seem like this isn't the case but kids with disabilities CAN go to regular daycare when they're young, and early intervention services will even go to the center to work with them there on therapies and stuff.
Our cover model for this post is sweet-faced Josiah, 8 years old. A lover of Mickey Mouse, he is able to propel his own wheelchair. He is deaf and uses ASL to communicate (as a Mama whose kid also speaks ASL I'm telling you, it's a really cool language and a joy to learn about!) Jo-Jo is waiting for an adoptive home in a medical facility in New Jersey. Somebody bust this boy out of there! That is a face of a boy craving adventure beyond the walls of a hospital room.
Those interested in Josiah should search child code NJ010061MR on adoptuskids.org
