Sunday, September 8, 2013

Who will take my role?

Have you ever thought about what would happen to your children if you passed away?

What would happen if both you AND your husband passed away?

I am sure it has crossed your mind before and you may even have a will written out in case that has happened. Or you may not have a will, but you may have at least asked a couple if they would be willing to take your children if anything happened.

As a special needs parent, we think about that quite often. It's a fear that our child wont be well cared for if something happens to us. We know our child very well and all of their needs and wants. Many of us can know what our child will need by a small moan or a quick look. Some of us may be able to fulfill their needs before they even need to ask. Or sometimes there is no way to console our child but we know ways to comfort them while they scream or things to do to ease the pain. Many of us often worry that no one will be able to care for our children the way that we do. Some of us even worry that no one will want to care for our children.
Before Oaklynn was even born, Austin and I had dinner at my sisters house. We asked her and her husband if they would take our kids if anything were to happen to us and they happily said yes! Well, Oaklynn got the diagnosis and life has changed for us. There is no way I can now approach that same sister and ask, "You're still OK taking our kids if something happens . . .  right?" Caring for a special needs child is different than caring for a typical child. I would never want to ask her and have her feel obligated to say yes because if she says no then she may seem like she doesn't love my children (though I wouldn't feel that way at all).

I had a couple other sisters sit me down and tell me that even though Oaklynn is special needs, they would love to take her and my other children if anything happened to us. They explained that they knew what they were getting into by offering, but that they feel like they would be able to take the responsibility and they would feel blessed to have her in their family.

I got home and started crying. As a special needs parent, it is not easy to ask someone to care for your special needs child (and their siblings because it isn't fair to split your kids up just because they are different). You don't want the person to feel obligated to say yes. They do say yes but they really do not feel comfortable to take on such a task, they just don't want to hurt your feelings. As the parent, you want to know that your child is going to be with someone who understands what they are getting into and is willing to take on raising your children no matter how difficult the days may be with a special needs child.
So what I am getting at is that I want you all to think about if raising a special needs child is something you could do. Then think about someone you know (maybe a sister, cousin, aunt, friend, someone at your church . . . . ) who has a special needs child and think about that child and their needs. Put yourself if their parents shoes and think about if raising them is something you could do. If so... TELL THEM! You may think, "they have a big family, I'm sure they already have someone who offered." But don't think that way because you never know and you may be that person who the family has been waiting for!

It is so much easier to have someone come up to you and let you know they are willing to take on the parental role. That way you know that they really would be willing to then having to ask someone who you worry they just said yes so they didn't hurt your feelings. Or if someone asked you to take their children before they had a special needs child and you said yes before, re-assure them that you still want to raise their children if something happens to them. And if not, then be honest and let them know that you don't feel like you could raise a special needs child. I guarantee they will not get angry but be happy that you spoke up.
No matter if you are a special needs parent or not, we all want to make sure our children are well cared for if something happens to us. It's just harder to find someone to take that role when you have a special needs child. So help us out and speak up! Let us know if you are willing to do so. . .  it will help give us one less thing to worry about.

Typical moms. . . what would be a concern or worry about approaching a special needs mom about taking on her role if something were to happen?

Special needs moms. . . Please share how you would feel if someone approached you and offered to take on your role.


kitty said...

I believe its the worst part of being a special needs mother. im terrified. I put in my will that she is not to go into a group home. ive heard story after story of sexual abuse occuring in those homes. my daughter is nonverbal and although shes 9yrs old she is at a 1yr level. my old hope is her sister. I hate to put that responsibility on her but its realistically all I have. my childrens father left me while I was pregnant and hasnt been found by CSE. I wouldnt want his family around her anyway. my parents are pushing 80 and my 2 sisters are much older than me. this topic use to keep me up at night and is bringing me to tears as I type. Gia is 100% dependant. nobody is going to do what I do for her. Her sister will im sure. I hope. I pray.
As morbid and horrifying as this sounds I hope I outlive Gia. the thought of anyone neglecting or abusing her is to much to handle. she is the most beautiful, loving, adoring, trusting child and if im not here to protect that innocence who will? said...

God bless your sisters and family. This is a concern all we special moms struggle with - what does a mother want for her child? To always be safe, loved and cared for.

Anonymous said...

This is definitely a subject we ALL think about and one that keeps us up at night. My "child" in now in her 20s, on a night ventilator, and even if I chose to have her go into a group home (I have not!), there are none that would take her due to her medical needs. As difficult this subject is for parents of special needs children, it becomes heart wrenching for those of us who are becoming senior citizens and are aging as well. I wish there were more resources for these adults as they get older, but at this time,there are not. I love my daughter more than life itself and want her to be treated with the love and respect she so deserves.

Anonymous said...

I feel exactly how you feel.