Inability to attend appointments, tend to my health no help W toddler

Inability to attend appointments, tend to my health no help W toddler

Posted by Brit07Benjamin on Jun 7, 2017 9:00 pm

 anyone know of any resources to help me with my daughter she's three and I'm running on empty . I feel absolutely helpless I can't run or play W her we have no yard I am mobile but suffer from autonomic dysreflexia and brown sequard syndrome as well as Inc sci t6-t9. I can't keep up W appointments her father works and his job is not one he can change hours they are never consistent but it's a good job I just need some help im losing my mind I feel horrible she can't go play or has any friends I have no one to help no friends nothing and there's no kids around here. Daycare I dont qualify for bc I don't work I can't and babysitters havs had no luck with. I'm mentally exhausted and physically tired. Any ideas suggestions I've gotten through being in a wheelchair raising her but now that she's older active etc we have small space it's getting hard to do anything 

Re: Inability to attend appointments, tend to my health no help W toddler

Posted by prc_Beth on Jun 15, 2017 3:01 pm

Hi Brit07Benjamin,

My name is Beth and I am a member of the Information Specialist Team here at the Christopher & Dana Reeve Foundation. It sounds like you are having a bit of a rough time right now. Please call 1-800-539-7309 or 973-467-8270 and ask to speak to an Information Specialist.  We have a 
wide range of information and resources for individuals living with paralysis, as well as their family members and caregivers including information on Parenting with a Disability. Since you mentioned dealing with Autonomic Dysreflexia (AD) I was wondering if you had ever received our wallet card on AD. If you don’t already have one I recommend getting a couple of copies to have on hand. You can request a copy when you call or you can order one here: https://www.christopherreeve.org/living-with-paralysis/free-resources-and-downloads/wallet-cards

Regards,


Beth
 

prc_Beth
Associate Information Specialist
Christopher & Dana Reeve Foundation
Paralysis Resource Center
636 Morris Turnpike Suite 3A
Short Hills, NJ 07978
1-800-539-7309 x7220

1-973-467-8270 x7220

www.ChristopherReeve.org

Re: Inability to attend appointments, tend to my health no help W toddler

Posted by SpinalCord.com on Jun 19, 2017 11:48 am

Hi Brit07Benjamin,

It is important to know that you are not alone, keeping up with kids is a lot and with additional challenges it can be overwhelming sometimes. Hopefully you have taken advantage of the Reeve foundation support line. Below is a blog with some additional information you may find helpful:
http://www.spinalcord.com/blog/10-tips-for-caring-for-a-child-when-you-have-a-spinal-cord-injury

Based on your post, it may be bennefical to join a local "mom's" group, while the challenges you face are different is is possbile they will have ideas that you can put a spin on. If you haven't joined an SCI support group I would recommend looking into that as well. 

Best of Luck.

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