This year for Down Syndrome Awareness Month, I decided to approach things differently. I wrote an article that gave advice to siblings of persons who have Down Syndrome, making the siblings aware of certain things that they, as caregivers, should seriously consider. Out of that article, came the request for me to write a similar piece, but for parents.
So, after thinking about it for a while, I decided to write an “awareness” article for parents, from the perspective of a sibling who is expected to care for their brother/sister in the future. Here goes…parents, I hope you find this information useful.
1. Do Not Expect Your Other Children To Be Caregivers
Instead, ask them. Speak to your other children and encourage them to be honest about how they feel with regards to being a caregiver for their brother/sister. Explain to them what being a caregiver actually entails…let them know the good and the bad. Also, let them know that at any time, if they change their minds, they should feel free to let you know.
If you have a child who does not want to take part in the care of their sibling, please try to understand that they have that right. This can be a hard pill to swallow, but your children have the right to choose how they wish to live their lives and thus, they can choose not to be a caregiver.
2. Have “The Conversation”
“The Conversation” is that dreaded discussion that no parent wants to have with their family and friends about the future care of their child who has Down Syndrome. Parents, let’s face it…chances are, you will not outlive your child who has DS. I know this is hard to think about and some of us can’t even say it out loud. You literally cannot think of your child living without you…it scares you immensely.
Take a breath. This is totally understandably. I just want to encourage you to try (I know it’s hard) and look at this situation in a balanced way. I will not ask you to remove your emotions from the situation…that’s ridiculous…what I am asking is for you to remember the incredible love that you have for your child, be honest with yourself about what will more than likely happen in the future and prepare accordingly.
So, have a meeting with your family and friends (all who are a part of you and your child’s life) to establish who’s on board. Allow persons to voice their honest feelings in relation to what they are willing to do and the role they are willing to play.
Please note, you should start having these discussions early on (maybe start when your other children are teenagers) and these discussions should be on going to keep up with any changes.
3. Have a Plan
Once you know all who are on board, you all need a plan. This plan will have to be revised as the years go by…as obviously things and person’s situations will change. So please ensure that your plan is always up to date and thus, the reason why you should be having regular conversations with all parties involved.
It may be that your other child(ren) will be the caregiver for just a specific period and another sibling then takes over OR one child will be the primary caregiver after you, the parent, passes. Whatever the scenario, have the discussions and flesh out the details. Ensure that all parties are clear as it relates to their expected responsibilities.
4. Your Plan Must Include Finances
It takes cash to care, so what’s the plan in terms of finances? I know we get uncomfortable when it’s time to speak about money, but this is unavoidable. If there was ever a type of family that needed to discuss money, it would be a family who has to plan long term care for at least one of its members. Your other child(ren) need to know if you will be providing funds to care for their sibling or if they will be expected to figure things out on their own.
I know each family’s situation is different…some parents will have some savings put aside, others will not. This is why it is extremely important that families with persons with Down Syndrome have a financial plan from Day 1. How will medical care, food, living arrangements, therapies, classes, etc. be funded? Clearly state the expectations. Clearly state the financial reality of the family.
I think it is important that I take some time, at this point, and state that this is why it is so important for parents to allow their other children to thrive and become their best selves, and not hand over responsibility for their sibling to them until after you, the parent, are no longer able to provide primary care.
Think about it: if your children are aware (from the discussions you had) that they will be the caregiver one day, and you allow them the time to focus on themselves, don’t you think this will enable them to position themselves in such a way where they are able to provide optimal care for their brother/sister?
There is no one-size-fits-all plan, as all families are different. However, by having the necessary and honest conversations… early and consistently…an appropriate plan can be established and maintained.
Best of luck to all you wonderful families out there. HappyDowns will do its best to provide all the help and guidance we can to you.