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  • 2 days ago
SINGLE mom Janie has raised her five-year-old son Ali all by herself without ever seeing his face. She first noticed she was losing her sight in her twenties, as Janie told Truly: "One day I was driving and I was like, 'Everything just looks so blurry to me'." After being referred to specialists by her doctor, she was soon diagnosed with keratoconus - a rare eye condition that now means she can only see colour and "cannot see shapes or details." By the time Janie learned she was pregnant she had adapted to life without her sight, but there were challenges ahead. When Ali was "about a year and a half" Janie noticed behaviours that concerned her: "When he got angry he would bang his head on the floor." It was not long before she received confirmation of Ali's diagnosis: autism and severe ADHD. The news rocked Janie at the time, as she began to question herself: "I was crying because I'm like, 'I'm losing my sight and now I have to deal with a child that I know needs way more than I could offer'." But Janie quickly set aside her fears and asked herself one simple question: "What do I need to do?" She developed innovative ways of communicating with her son through listening and touch and has raised a happy, healthy five-year-old who is now thriving thanks to a homeschooling program that enables him to learn through play. Janie has even self-published a book for children to learn braille, after teaching Ali to read this way in case he inherits his mom's condition later in life. But it has not all been smooth sailing. Janie has been met with "a lot of stares" when out in public, has been accused of "faking" her condition and has received comments online judging her ability to parent Ali due to her condition. But there is one event that has stayed with Janie more than any other - when someone "called the police" on her, wrongfully assuming that she was beating Ali in public. This was, of course, untrue - Janie was simply taking her son to a doctor's appointment, using her cane to guide her. But despite all the negativity she has faced from ignorant strangers, Janie is more determined than ever to push forward with positivity and enjoy every moment with Ali: "I walk by faith and not by sight - I don't know what's coming up next, but I refuse to live in fear. I just can't wait to see what else is coming for us."

Follow Janie and Ali:
https://www.tiktok.com/@ali_n_momma2020
https://www.facebook.com/ladii.ruby
https://www.linkedin.com/in/janie-desir-540a9b238

Learn more about Janie's book:
https://www.facebook.com/teachingyour.babyinbraille
https://www.instagram.com/teaching_your_baby_in_braille
https://www.youtube.com/@teaching_your_baby_in_braille
https://www.tybibraille.com

With thanks to:
https://www.instagram.com/capturedmoments.saramarie
https://www.instagram.com/martinpublishingstudio

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Transcript
00:00People call the police on me for being a blind mom with an autistic child.
00:04Autistic kids need someone who can watch them closely.
00:08What if he runs?
00:09I feel bad that he has to grow up like this.
00:12He needs a normal environment.
00:14I get a lot of stares.
00:16Or I think she's faking it.
00:20Do you have any concerns of doubts about your ability to be a parent as a blind single mom?
00:25I am a single mom with an autistic son.
00:32And I am legally visually impaired.
00:37It's open. It's open already. Here. Here.
00:40I have a rare eye disease called keratoconus.
00:43And I have some vision which I only can see color.
00:48I cannot see shapes or details.
00:50These are when I need to push for buttons to like know what's what different shapes.
00:54I even have these labels here on my stove too.
00:59So I know. And these buttons are really sensitive.
01:01So I got to be careful when I push buttons.
01:03As far as cooking goes, it does get difficult.
01:08That's why I usually keep a timer on.
01:10If that doesn't happen, my hands are going to get burned.
01:13I have a lot of burns.
01:15My hands.
01:17Let's start with the story of your son.
01:20One day I was driving and I was like, man, I'm having a really hard time seeing.
01:26Everything just looks so blurry to me.
01:29And then that's when the eye doctor was just so amazed.
01:31He was like, you have this kind of eye disease.
01:34He's like, I never came across.
01:36Well, you need to go and see a specialist now.
01:38I was scared.
01:39They told me by the time I was 30 that I would be totally blind.
01:45How much are you able to see?
01:47It's like being a drunk person.
01:51Like when you see the movies, how they have like double to like triple vision.
01:55And it's just like really blurry.
01:57Is anything that you find difficult to get in the kitchen?
01:59The seasonings is the one that really takes me out.
02:02Is when they're all over the place, then I'm like, okay, which one's which that I have to pull out my phone.
02:08I'm over here trying to scan barcodes and be like, while it's reading it to me, be like, okay, which one do I need?
02:13Which one do I need?
02:14And my son's like, if he's stimming and making noise, it makes it even 10 times worse.
02:19My son is Ali.
02:21He's five years old.
02:22He goes by Sonic.
02:25And he is autistic and severely ADHD.
02:30Hello.
02:31Good morning.
02:32How are you?
02:35I'm playing my game.
02:37Come on.
02:38It's time to get up.
02:41What were your emotions when you found out that you were going to get out?
02:45What I, oh my goodness.
02:49I prayed to God for a little one.
02:51And I was just like, I think I need a drink.
02:55Do you have any concerns about your ability to be parent, even someone in a single mom?
03:02No.
03:04Show him your special bed.
03:06It's a special needs bed.
03:08So, therefore, to keep him in and safe at night, I can zip him in.
03:15I would say I'm very hands-on.
03:19Don't look at me like that.
03:22When he was younger, I got him some knees and elbow pads and I sewn bells to them.
03:29So, every time when he was whipping around on the floor, I would hear chingling, chingling, chingling, chingling, chingling, chingling, chingling, chingling.
03:36So, I knew where he was.
03:38So, I wouldn't accidentally step on him.
03:40Let me get you ready and we can get you something for breakfast.
03:42What would you like?
03:43Want some cereal?
03:48I can do cereal.
03:52It's okay.
03:53Come on.
03:54Listen, how about I make a deal?
03:56I give you cereal and you can have that after for a snack.
04:01What do you think?
04:03Good.
04:04Good.
04:04We're very outspoken about our feelings.
04:08People like to say he has big emotions.
04:10Is your mom fun or straight?
04:13Am I fun or am I mean?
04:16Fun.
04:17I'm fun.
04:18I want to teach him to be more independent because I know as time goes on, my sight will get less and less.
04:30As long as I don't step on him, that's fine by me.
04:33Here's something else, kid.
04:35I learned about his autism when he was about like a year and a half.
04:45So, what do you think that we're going to do today?
04:47Numbers, since we're learning about colors still.
04:51I need your table.
04:53I noticed signs.
04:55When he even got angry, he would bang his head on the floor.
05:00And I was just like, I didn't understand none of it.
05:03When I found out, like, everything about it, I stopped.
05:12And I just bawled my eyes off.
05:15I wasn't crying because of him.
05:16I was crying because I'm like, man, I'm over here.
05:21I know I'm losing my sight.
05:23And then now I have to literally sit here and deal with the child that I know that needs way more than I knew that I could offer.
05:33But after I found out about his whole diagnosis, first thing I did was, okay, so what's next?
05:45What do I need to do?
05:47Somebody's at the door.
05:48Let's go.
05:49Who's there?
05:50Who's here to see you?
05:52Are you ready to play?
05:53Ready to play?
05:54Yeah.
05:54The reason why I decided to homeschool Ollie, there's no other schools that's local around here that were, like, private that would accept him because they were like, oh, because of his challenges, we don't have the right equipment or assessments for him.
06:15Okay, buddy, just slow down.
06:17This is a fun painting activity.
06:20Okay, so you're painting the bear.
06:22I'm a behavior analyst, so I've been working with him for almost two years now.
06:29I come here a few times a week, but I'm here to help teach more communication.
06:35How does being a blind parent of a child with a specialist make communication more difficult?
06:39Ollie was not speaking when he was a little younger, so that was hard.
06:45I don't know what you want or what you're trying to do.
06:48You need to come closer so I can see or feel what you're doing.
06:51We use feel, touching.
06:54We use every type of way of communication as much possible.
06:59Just one, and then we're going to do it, and we're going to do Braille, and then you can do another one.
07:02And I can't get another one.
07:04Yes, after we do Braille.
07:05Come on.
07:06Can you make this number for me?
07:08Zero.
07:09Is it possible that Ollie would develop the same position as you?
07:14Yes, it is possible.
07:16That is one of the main reasons why I decided to teach Ollie Braille.
07:21If he does inherit my eye disease, he would be already ahead of the game.
07:26Plus, this is like another language.
07:28You're going to have some screen time?
07:30Okay, can you help me clean up first?
07:32I need a cookie.
07:34You don't forget about the cookies, do you?
07:37What sort of judgment have you received in relation to being a blind mouse?
07:41I get a lot of stares.
07:43Or, I think she's faking it.
07:46And the one pet peeve that I really hate, that people really do, they come up to me and start waving their hands in my face like this.
07:54One of the most online comments that I get was like,
07:57Autistic kids need someone who can watch them closely.
08:00What if he runs?
08:01I go with my son, I ride with him with precautions.
08:06There are harnesses that you can use.
08:09I feel bad that he has to grow up like this.
08:11He needs a normal environment.
08:15Ooh.
08:16His environment to me is beyond more than what some kids can even imagine.
08:24I mean, like, he, to me, I feel like he lives one of the best lives.
08:28One of the best lives.
08:30I'm kind of jealous.
08:32Tell us about the time that someone called the police on you.
08:36We were walking out of a doctor's office.
08:39He was standing in front of me, and I had my cane in front of him.
08:42So, when I was weaving back, side to side, right to left, it seemed as if, like, I was hitting him with it.
08:48And also, he was giving that gesture, like, pulling, yanking from me, because he's like, I want to run.
08:54A police officer just literally stopped his car, and he was like,
08:57Excuse me, ma'am, can I talk to you for a minute?
09:01I got a call that used to be beating a kid, a child, with a stick.
09:05And I'm like, that I'm blind, and I'm just trying to get my son to a doctor's appointment.
09:11And he felt so bad, he didn't even know what to say.
09:19The judgments really don't break me.
09:22It pushes me to even want to go harder as a better parent.
09:26Good girl.
09:27That's my good girl.
09:29For other parents who are in my shoes, I would say live your best life with you and your little one.
09:34Always think outside the box.
09:36Don't limit yourself to certain things.
09:39That's one thing that I would say to all of them.
09:41Woo!
09:42Woo!
09:45I don't know what the future holds for us, but all I know, I'm excited.
09:51This journey with him has been wonderful.
09:54I've learned a lot about myself.
09:56I walk by faith and not by sight.
09:58I don't know what's coming up next, but I refuse to live in fear.
10:02I just can't wait to see what else is coming for us.
10:09I don't know.
10:11I'm like, I don't know what the future holds for us.
10:15I'm like, this is something I love you.
10:20I'm like, what, what, what, what, what, what, what, what, what, what, what, what, what, what, what.
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