My mother-in-law recently passed away. My husband and I traveled back to the Chicago area to help the family take care of arrangements. There are many things that need doing in events like this.
What many people do not know is that my husband is the youngest of 7 boys! The 5th-born son has disabilities. When he was born, back in 1965, things were very different. There were no services, resources, support groups, or even medical options like we have now.
The family did not realize he had a disability until he was a few years old and started missing milestones. As the other brothers grew up and moved away, he remained at home with my mother-in-law. This was the life they knew. They were a package deal.
After we had Casey, especially after we got her onto a Medicaid waiver, we realized how hard it is to get services. And how easy it is to lose them. We talked with my mother-in-law a lot about all the legal paperwork needed to make sure my brother-in-law would not lose his services if or when she passed away. We wanted to make sure she set up guardianship and a special needs trust for her son.
When we would bring this up, it was always, “I know, I’ll get to it,” but she kept putting it off. I get it, it’s not a fun thing to talk about. Not something anyone wants to think about. When you have a child with a disability (even an adult child) this is something you must do.
As we packed up and boarded the plane, my husband and I both worried that we may be walking into a total mess. Over the past few years, some of the other brothers were reminding her to take care of things as well. But none of us knew if she ever did.
The brothers and their families gathered at my mother-in-law’s home that first night. One of the brothers opened the safe. There was such a feeling of relief when we saw what was waiting inside the safe. She had taken care of everything! She even went as far as to tell everyone what she wanted for her service.
We were all so glad to know that my brother-in-law had things arranged for ahead of time. It was a huge reminder to me about how important these measures are. There are legal services from no cost to as much as you can spend available to help set things up for your child.
If you have not already done this, please start the process now. Even if you are in perfect health.
No one wants to see our kids lose services or get placed in facilities that we don’t want for them. We don’t want anything we saved to leave them lost to the courts in probate. Please, take steps today.
Over the years, parents of children with disabilities and special health care needs have told us many stories about dealing with bias, unfairness, racism, ableism or discrimination against their child.
Categories: Family Support
As the parent of a child with mild Cerebral Palsy, I learned that the word “hurry” doesn’t apply to my son, Jason. With motor planning difficulties, hurrying just wasn’t something he could do. I learned to adapt and accommodate our schedule to allow extra time. However, when I found myself in the situation of caring for elderly parents & parents-in-law, and our son, I struggled to find the patience I once had with Jason.
Categories: Family Support