I’ve been married for five years. Things were okay at first but when our son was born and eventually diagnosed as disabled with special needs (cognitive and physical), I left my job to stay home and care for him.
Carrying him everywhere is taking a toll on my back and I fear it’ll only get worse. Being constantly responsible for him as well as for the upkeep of our home, meals, laundry, etc. is exhausting.
My husband works long hours and has become used to my doing everything.
By the time he comes home, he’s exhausted and also not used to handling our son. So I’m also cleaning up and putting our boy to bed.
There’s no free time for me, ever. And no time for us as a couple.
I have no clue about what to change or what to do.
Frustrated and Confused
Your son’s special needs are primary. He’s the most vulnerable one among you.
Your job looking after him is very important and you definitely need to have mental-health breaks in order to have the energy and emotional well-being for the tasks of helping him thrive to the best of his abilities.
Get informed. Search online for local agencies that offer services for children with disabilities.
Learn about assistive technology systems including computer-based tools and software that have the potential to help special-needs children to learn, communicate, play, and be more independent in their lives. It’ll help you see some positives ahead.
Depending on where you live (unknown to me) there may be hospital-based or agency-based services - these can include physiotherapy, speech and language pathology, supports for vision-challenged children, and for those with hearing problems.
Some services may be free, others may have a fee based on your family income.
If you don’t live near places that offer these special-needs supports, contact the agencies online for direction and help.
Also ask your child’s physician for ideas on how and where to find programs that will help with your son’s development.
Since you’re mostly on your own, look for the availability of babysitting or respite care, whereby someone who’s trained to work with disabled kids can relieve you for a few hours.
There may be a drop-off program of short-term daycare that allows you to have that much-needed break for a couple of hours.
It’s understandable that you and your husband both feel exhausted from your responsibilities - his, to provide the sole income, and yours, to protect and assist your youngster to be able to eventually participate at home, school, and in the community, as he grows.
Your circumstances are hard on any couple’s relationship. But it’s an extremely important time to try to pull together and appreciate each other’s roles and limitations.
It’s essential that you have a regular break. And essential that he also bonds with his son.
Some leads to follow: Through the US department of Health and Human Services, Womenshealth.gov is a website with information on raising a child with a disability.
The site offers many resources and would be especially useful for a parent of a child who is newly diagnosed. Another aid is through [email protected].
Look, too, for enough reliable help for you to have the time to rest, think and seek appropriate programs for your child.
If you can also get personal counselling (some therapists offer online counselling) it’ll help you define the issues and what you can handle at this time.
FEEDBACK Regarding the grandparents whose grandson only contacts them when his university tuition fees must be paid (October 2 ):
Reader – “Here’s the secret tactic for the grandparents to stop feeling like they’re treated as “The Bank:” Their grandchildren should be told that they must have a summer job, work-part time while at school, and get student loans.
“Only when they’ve graduated, do the grandparents pay it off, directly to the lender.
“Trust me, this policy works to keep the grandchildren close to their grandparents.
“Also, these experienced grandparents will have taught these students that they have to earn what they get.
“It’s a life lesson they’re not getting from their parents.”
Ellie - The grandparents wrote that they’re trying to appease themselves for his lack of thanks, by stating that the money’s being used for "a better future for our grandkids." This suggested “life lesson” is equally part of their education.
Tip of the day:
Research every avenue for your child’s special-needs support, while making sure you take breaks for rest and energy renewal.