Multiple sclerosis affects different people in different ways
I'm 40 years old and
I had my life together and
unfortunately for the last
three or four years
I've been disabled it affects my speech it affects my thinking it makes me very exhausted
I wake up tired so I can't work anymore
My mother has started pre dementia. My son Jacob was born with a rare condition called sagittal craniosynostosis
And he's had seven surgeries
I got denied for Medicaid, my children got denied for Medicaid. We have no food stamps
My husband works two jobs, and we make it work we have no choice
Unfortunately Jonathan has to take a lot of responsibilities
I wake up 5:30 get clothes on, put my binders in my backpack that I need for today
I check on grandma, check on Jacob, watch TV. That's around like 6:20. Then after that just go brush my teeth
Then I check on my mom
Sometimes I find it hard for me to do the homework and to help my mom.
I fix my schoolwork is because sometimes
I'm not able to do it the teachers think that I'm just another student that just doesn't care about school, but I do
They don't understand what I'm dealing with
People think that there are social services available for this population, and there's really not
Essentially all of our government programs you have to be 18 or older
And we don't really know how many youth caregivers there are
We just know that there's more than 1.3 million children ages 8 to 18 in this role
You know they're so under the radar screen that people just don't recognize it
So at school we have groups where they could express how they feel.
The challenges that they have and a lot of students that come into our program, they always thought
It was just them who had to leave school and just go home and take care of mom
But when they come here they find out that you know it's a community of students
It's like there's other students out there that are in the same predicament.
My younger brother, he has this thing called Rubinstein Taybi Syndrome
You have to help him around the house, his bones break very easily.
I care for my brother. He has cerebral palsy, so like, he was born really early and because both my parents have, like, back problems, so I carry him a lot.
I don't think I would be able to do anything without that group
It's- it's basically second family. When I talk to friends about this it feels awkward
They're not living in this situation so it's, like, weird
Basically is when mom has her medication. Those are the bad days
She's in pain, and she's not able to suffer by herself
So I helped her with it whatever she needs, if I don't it's not gonna get done
You take your pills?
your pills?
I have three good weeks
And one bad week and the bad week is really bad
There's days, and it's so humiliating
To me as a mother to have my son carry me to the bathroom
Not allowed to take a shower by myself so if my husband is not home
He has to sit in the bathroom with me, but he does it with a smile on his face
Tells me, "Don't you cry."
That's a big burden to have
on a 15 year old child who should be living life going to homecoming
Worrying about what movie he's gonna go with his friends not
hurrying up to come home to take care of his little brother, or take care of his mother, take care of his grandmother
He shouldn't have to worry about those things
Make sure he brushes his teeth
Don't feel sad about this. I feel like it's a good thing to do
He's just...
my angel. He just takes it with stride
and he keeps on trucking. The only thing that really means the most to him is football
that's the only thing that is his and his alone
I love football because I don't have to take care of anybody over here. I just do my thing
Being on the field to me, you're like an eagle that just learns how to fly.
Think you're up in the air just by yourself
just flying
I can block everybody out
Just do- do me