I am a married mother of two diagnosed with RR MS 5 years ago. The diagnosis came when my youngest was a year and a half. He was our preemie born 6 weeks early. And age 3 he was diagnosed with moderate to severe Autism. He’s 5 and in Kindergarten. His intelligence is where it’s supposed to be. But his verbal, social/emotional, and some physical development is still behind. He’s sweet but is a clingy mommy’s boy who can be very demanding. We still wouldn’t trade him for anything. He’s a wonderful little boy.
I have been working for a government agency for two years now. I started full time and then went to part time (30 hours a week) 7 months ago. I have stated to lose motor function and endurance in my hands. This is starting to affect my job.
Also my son was kicked out of daycare for challenging behaviors back in June. That was a fiasco because they said they take special needs kids but are not equipped to meet their needs. They threw my son into a large group of kids ages 3-11 in one big room with only two adults. He couldn’t deal so he acted out. He’s been in ABA therapy for the last few months which is a huge help.
But he also has asthma (like his momma) so sometimes a cold can make him really sick and threaten his breathing. So I have missed a lot of work while nursing sick kids and myself. I am physically and mentally exhausted.
I have had a worsening of symptoms in the last two years. But according to my MRI’s there is no progression or new lesions.
I have been having a debate for a long time with myself. We can’t live on one income and going to work is painful, sometimes stressful, and draining. After work I am one of the caregivers to our kids especially my SN son. I feel like I give all I have and I continue to struggle.
I want to keep working because I enjoy getting out of the house and we really need the income. My husband works but it’s not enough to fully support us.
But I don’t know if I can continue to work and care for my son. My body just wants to collapse. And I feel discouraged when I do my best at work buts it’s still not enough. And I feel like a failure for thinking of getting on disability.
How do I make a big decision like this? When is it time to throw in the towel?