I fought with my brain to try and name these posts I’m about to write, and that I’m writing now. Raising a disabled child is more than just reading, writing, and arithmetic. So when I was reviewing Smart Kids, Bad Schools, and saying how much special ed did wonders for me and Jessie and others, I thought we’d go back and remember the times we as disabled people need to remember. This is mostly a little reflection site for parents here who are considering having kids. So, today, let’s begin with a before the kids are born thing, and I’ll jump into the meat and potatoes.
Suppose you are a young bride and groom. You marry, have a wonderful honeymoon, the works. Then, you say, “Hubby, I want to have my children now.” Well, the husband and yourself should do the following steps in clear words: get tested for all the bad stuff, look for good stuff, and dream away. Getting tested for the bad stuff depends on your ethnicity and race, of course. If you are Eastern European and Jewish combined, there’s a panel for you to go on testing for. Certain genetic issues pop up for Native Americans, or First Nations peoples in Northern America and Canada, such as Cree and other tribes. If you have Cajun and other Southern ethnic groups, there’s even a panel of tests for you. Depending on who you are and your genetic makeup, counseling may be great to do. But what if you opt out? You can, if that’s what you’re into. You should not have to test your DNA like crazy. Second and third steps are easy. Think about the good stuff, and dream away. Think not so much about your perfect child. See the post on What Is the Perfect Child from last year.
Also, let’s begin the birthing process. Yeah, scary isn’t it?
So imagine for you parent wannabes that you and husband are in the hospital, or you and your wife, whatever. You guys have had yourselves a great conception, conceived within the woman’s womb, the whole works. You give birth to a … what is it? Oh no!
The doctor and nurse come in and say, “Something is wrong with your child.” You’re scared, but then you hear the news: “Your child has (blank).” Fill in the blank with your child’s disability. Say your child is blind. Or has Down’s Syndrome. Or is blind with additional disabilities of intellect or other things. You are floored, scared, etc. As a parent, you know the goals of true parenting: you want your kid to live on his/her own. But there are barriers in this stupid wide world: housing for wheelchair bound people is off the charts and expensive, employment discriminates, and who will be your child’s future bride/groom? Every parent, except some or those who want nothing to do with said child, has choices to make. Here are some choices that you can make as a mother or father of a disabled child:
1. If the prenatal tests reveal the child’s disability, you could be told to abort said child. I will never even condone this practice because had this been done to half my friends, myself, or anyone else I know, I wouldn’t know who they were. There wouldn’t be a Beth in this world had my mother not been Catholic enough not to do what she decided to do, keep me.
2. Adopt out your disabled kid. This is a bad choice for some people because it shows the parent’s unwillingness to learn and grow as a person with that disabled kid. I wonder how moms like Mrs. Hernandez and Kathy would have felt about the parents who would say, “My child throws fits.” I’m not talking about these women’s kids, but if you were to go to support groups, you would hear many stories of parents, not these two women I mentioned, but other parents might say, “I want my child institutionalized. I want my kid put away. I can’t stand the kid’s fits, rage, inability to do what have you.” But the women I mention, Mrs. Hernandez and the Great Kathy B. would say, “Oh what do you say! These kids taught me so much!” The initial stages of raising all kids is scary. I’ve seen everything from the infant years to the terrible Two’s, and Terrific Two’s as well. I’ve even seen a four-year-old, but when children have intellectual or physical disabilities, some parents simply don’t know much.
3. Keep the child if you are the woman raising said child. My mother, Mrs. Hernandez, and Kathy all made the right choice. They kept their offspring, and by doing so, learned, grew, etc. In Florida, my mother did not learn half the things the Jessie’s and Blake’s moms might have learned in the early years. My mother said once a few things to me about the Early Achievement stuff at Lions Camp. Since my trips to Lake Wales, the camp has shut down.
FLC was a fun place to be, and even for young kids, it was still a fun place to be. The early years can be scary for all parents of disabled kids, but there are things you can try:
1. Learn. Go online. Thank God for Google. I wish Google had been available to the mothers in the 1980s and earlier because there would have been a wealth of info for these women to find stuff for the disabled children. Maybe the fathers would have learned stuff. My biological papa did not have anything to do with me. All of us: Jessie, Blake, and myself have this in common in the initial stages. All three of the guys who were supposed to be good dads were scared. But unlike me, Jessie’s and Blake’s dads came back, bonded with the sons they bore with the women they married, and the fathers actually learned. The key is learning what disabilities your kids have, what can be done, etc. Jessie’s mom might have seen the following support groups helpful: the ACB, the NFB, and the Lighthouse for the Blind are all great tools and they have great sites on vision loss. For any other disability, you can Google stuff like “Down’s Syndrome” or “Arnald Chiari Malformation” or you can try “Bipolar” or “attention deficiency disorder.” All of these keywords will pop up many results. This information can be really helpful to mothers and fathers in the new Millennium. Why do we have Google in the first place!
There are many children with disabilities whose families ultimately decide to stay together. While Blake, Jessie, and myself are all linked by not just the stuff we love to do, being friends, etc., we’re all powerfully bonded like we’re brother and sister and … well, we know the rest. All of us are God’s family, so why exclude the disabled because they are disabled? God made them this way. That’s an attitude I would take had I had any disabled kids in my life, in my care, etc etc.
Here’s something else that parents should try.
2. Go to supports groups. Allow your children to bond with others with disabilities similar to their own. For instance, Down’s Syndrome Alliance, blindness related summer camps and stuff, Cranial Facial Retreats, what about Lung Disease supports groups? Ok, how about rare genetic disorders? Whatever the disability, let your child shine, not have to say, “I’m different.” When I said I was blind, and to the sighted kids no less, I felt like a space alien from outer space. Like, way out in the deep spaces that is. I felt like I came from a different planet. So when I walked into FLC, I was like, “Hey, you’re blind, so am I.” I have made lifelong friends at this camp, including my dear friend Lici. I love her so much, and she is so weird. … Yes, I said it. She’s weird.
I’ve made lifelong friends in other ways too. Going to independent living centers allowed me to meet people that understood and helped me get through the tough times, the good times, etc. I’ve met even more people with whom I shared real friendships. I have a few sighted friends who understand, but when I went to the independent living center in Colorado, I met the two best guy friends I have met so far: Deq and Blake. I will never forget when we got ourselves lost on the bike path. … Oh, we talk about it all the time. I think about the weirdest things we did together, and Deq seemed to be the biggest problem solver in town I guess. But face this: getting lost on the bike path was something I wasn’t expecting. Oh well, I tried to be cool headed and that’s all that counted. …
3. Encourage your young child to play with other kids, be independent, and don’t just throw them in front of the TV. Mind you, this advice comes from my dear friend RJ from Maryland. RJ is sweet and yes, weird as well. The big problem with my weirdness is that nobody gets it. Nobody gets the blindness in the wider world unless you’re someone who knows blindness.
While you have a young kid up to age 5, I would encourage you as the Millennial parent to make use of technology, both high tech and low tech, to get your child reading, writing, and adding. However, blind children need to be in a social group of other kids, both blind and sighted, all the time or some times. Look at your child’s gifts. Praise your child for having such gifts, but don’t make your child into a freak show. If your child is a musician, do encourage said child to be that person. If the child is funny, I would love to see you try a standup comedian too. Don’t be surprised if your six-year-old child is asking about school. Encourage the child to read books, and read books to your child too. I would read all the books I can to my disabled child, whether they knew what was being said or not. The more the parent reads to the kid, the more cognitively aware and strong the kid becomes. If you are blind and a parent of a blind kid, Twin Vision books are great as well as the Dots for Tots kits and other kinds of books you can try. I’ll talk about school and why it’s bad to standardize test kids in a future post. But the next few posts are going to be about educating and raising disabled kids. The next two wilol be about kindergarten through the middle school, and then we’ll have a little bone to pick about standardized testing. I have the honor of collaborating with a panel of awesome blind and special people regarding tests. Tests are weird and awful, and as far as I’m concerned, tests are not the only thing kids should be learning.
Just one more note before I close: when you birth any disabled child, take the time to further learn about your child’s disability through all the stages. When your child becomes a teenager, I’ll say this, do not use unequal treatment with your disabled teenager. Allow your teenager to participate in all activities regardless of the discrimination barriers up there. That’s a future post as well. Take a few moments now, and listen up to the next subjects of my future posts:
1. Raising Disabled Children Part 2: ages 7-18
3. What Is Education?: Standardized Testing and How Evil It Can Be
3. Why The Music Died: So Many Schools Are Cutting What Disabled Kids Really Need to Grow On
Happy reading and commenting,