MS, Work, and Autistic Child
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?
Hi
, thank you so much for reaching out and sharing some of your story with us. I am simply amazed at your strength of spirit and how much you are juggling right now - of course you must be exhausted! Stress can definitely impact and exacerbate symptoms, and I am so sorry to hear that your symptoms have been worsening these past two years and impacting your career. Deciding when it's time to leave work is such a difficult decision, I commend you for reaching out here and seeking support and advice from others. It's a predicament so many here have faced - you are not alone!
We have several articles on this topic that may help provide you some guidance and support - 1) https://multiplesclerosis.net/living-with-ms/when-to-leave-work/ ; 2) https://multiplesclerosis.net/living-with-ms/workplace-accommodations/ ; and 3) https://multiplesclerosis.net/living-with-ms/working-remotely/
I hope these help and that others will also chime in and share their experience and advice with you.
Additionally, we do have a sister community for those living with asthma, if it'd be helpful for you and your son - https://asthma.net/ Thinking of your family, and I hope you'll continue to check in with us and let us know how you're doing.
- Shelby, MultipleSclerosis.net Team Member
Hi Allie,
I just want to come alongside Shelby, if nothing more than to let you know that you're not alone and you have someone standing with you!
It caught my attention when you mentioned your little one was kicked out of daycare but is now in aba therapy, which sounds as if it's been a huge help to you?!
It's no wonder you feel exhausted..you have alot on your plate! There is one more link and I hope it'll be helpful to you...https://www.nationalmssociety.org/Resources-Support/Find-SupportI know that probably the last thing you feel like doing right now is finding a support group in your area, but sometimes just connecting with someone over the phone or in person can lift your spirits and be a breath of fresh air.
Please keep us posted and let us know how you are when you have the time. Remember..we're thinking of you! xxxx's Janus
I am the married father of two boys and I was Dx with MS 18 years ago. I have been in a wheelchair for 10 years and had to stop working long before I wanted too. Also, my youngest is 14 and is autistic and non-verbal. Make sure you find out all you can about your disability policy through work. Since you have a government job, hopefully it’s pretty good. The policy at my company was great, so luckily I was able to stop working and it didn’t impact us financially. Stopping work on your terms is always the best way. Remember you are not a failure, but you have to listen to what your body is telling you. I was able to spend so much more time with my kids. As someone who has been through some of the same, let me know if you have any questions. Good luck with everything.
