Being Black & Parenting A Child With Autism

Hello, my name is Stephanie James, and I'm going to talk about autism and how it has impacted my family in the last seven years.

My son, who has been diagnosed right before he turned two with autism, we did not have a clue what it was. We definitely had to educate ourselves, and we was definitely in shock when the doctor gave us the results. We knew something was going on, but it's kind of like an out-of-body experience. We did not want to address the situation.

So once the doctor had diagnosed him, we made sure that we read up on it. What exactly is this? What resources can he get so that I can make sure that he can live and function as normal as he could possibly be because as much as I want to be here for my child, I know that I'm not always going to be alive, and I want to make sure that they can still survive and do for theirself when I'm not here. So I try to make sure that I always can get whatever resources that are available when possible.

So a little bit about my story is that I am a military spouse for the last 13 years, and that I have two kids. I have a 10 year old daughter and a 7 year old son. And when he was a baby, he was definitely cranky. And it was some rough nights and it's like he couldn't get comfortable. I couldn't soothe him. He was just uncomfortable. He didn't want to wear clothes. And I don't know if that was a sensory then. Looking at it now, it's possible.

But as we got past that and I first noticed that he wasn't really saying a lot of words. We did do a lot of jargon. So once we did get the diagnosis, and we realized what was going on, we did start doing a little bit of sign language. It was just the basics, like "please" and "thank you," "can I have," "I want," just so we could do a little bit better with communication with him so that we could kind of chill out with the tantrums because most of the time, the tantrums are happening because maybe it is a sensory or a lot of times it's, "I'm having a problem communicating with you. You don't get what I'm saying, and I don't... and you don't understand." So if we could find a way to communicate, then that was my biggest thing of getting the resources together.

So processing this diagnosis and realizing that we have a long way to go because we are black, we are African-American, and we already have a label on us by society, and it sucks. And now, you have an additional label because you are autistic. So these are things that I'm concerned about, and I'm worried about, and these are things that we're going to have to have more conversations as he get older that we have to talk about and address.

Some people might not think that you're as awesome as we do, and they might not like you. They might feel that your social awkward. How can we make you aware of these things? You're loved when you're in this house, but when you're stepped outside of this house, things are a little bit different. So those are my concerns. And those are issues that I had to deal with.

So first resource that we got, we did try ABA which helps with behavior, helps address an attitude. It helps with communication. Right now, they're working on him taking turns and learning how to play. He normally does not like to share. There was definitely issues when he was in school. If he's claiming something, that's his. So they are also helping with trying to get him to eat a little bit more than his selective things. He definitely has a sensory, and there's definitely a texture, a certain color. All of those things might hinder him from trying new things.

So with ABA, I did want to address that they definitely helped us because they came in and helped with potty-training, and we were trying for months and our therapist came in and within a week, my son was potty-trained, and it was definitely a blessing. I know there's mixed of how people feel about it, but I say to at least give them a month or so and if you don't like that therapist, you can request for a new one. A lot of people don't know that.

These are your services that you're offering for your child. And everybody's personality is not going to mesh with your child's personality. They're not going to click. So once you find that right person and it works, then it's like it can help, but what positive things can I take from this if it's not working? So if it can help address the attitude of the tantrums, if it can help with the functioning and me communicating, let's look at the positive.

So we did go through a couple of therapists before we found that right one, the right one that worked for us. And then we had two might've moved away. So... but once you... and then if you don't find that right one in the company, you can request to go to another company. Get a referral, however that works with your insurance because I know with my insurance right now, what we... it's free. I know some people have... it's not free for everybody, and some people have to pay out-of-pocket expense, but being that as for your child and if the resources are free, because most of them are, utilize it. How can this help me so that I... to help me so that I'm not having a bad day, so that I don't want to throw a tantrum, so that I'm not over here ready to pull out my hair because there's moments that we don't know what we're doing, and there's moments that we have a schedule, but your kid does not care about your schedule, and everything gets thrown off.

So also, we use OT which is occupational therapy, and OT helps with the cognitive skills. They definitely helped him with writing his name and making sure that he can zip and button up his clothes so he can do the things on his own and function. Right now, they're working on how does he feel? Do you feel that this is a good thing or a bad thing? So we're working on feelings, and we also use speech. We do that once a week, and that is helping with what was first. So what activity did you do first, what activity did you do second, and what was last?

And that will also help when he starts to read more in depth books, so he can give a description about this is what's going on. So this was the first, middle, and it's the last. So trying to get him to explain a story because right now, he cannot explain in detail or have a full conversation with you about what's going on. So that's probably the biggest thing that we're working on.

And with these resources that also helped get him into school early and so that was great because his reading level is awesome. He says a lot of words, his vocabulary has expanded, but he probably reads more words than he says. And he likes to spell out words using his magnets. So that has definitely helped a lot.

So I'd definitely say look into the resources, utilize them the best that you can, and whatever can help your life run a little bit smoother because having a child with any type of disability is so unpredictable.