Wednesday, January 25, 2012

Disaster preparedness

My friend Kari wrote a blog post a few days ago titled, "I look ahead and I cringe". She talked about the future and how scary it can be for our children with FASD and the people who love them. She had received a phone call from a mom of a son with FASD (around age 20), who committed suicide. A fear that many of us have.

Last night, I received a phone call from a mom of a 18 year old daughter who has FAS. Her daughter has been in a crisis home for 9 months waiting for a group home spot to open up. This mom received a phone call last night that her daughter was found with a young man, both of them with all their clothes off, having sex. Her daughter has an IQ of 56. She is devastated. The young man is a client also. Her daughter was being brought to the hospital for tests and stuff like that. This mom was on her way to a program with one of her younger children so she did not go. The staff's response were not all that concerned about the situation, the daughter is after all, an adult.

This is such a hard situation, and one I easily know we could be facing in the future. Even knowing that things like this are more than likely in our future, does not mean that each bump in the road does not break your heart. As I said yesterday, we have known for years that Akila probably will not be able to always live in our home. We know that we are at the point now where she needs an outside placement. Doesn't mean it doesn't hurt. Big. Time.

But it does help to be prepared. If we hadn't prepared ourselves for this, we would not only be dealing with pain, but shock and surprise as well- which only makes the pain more deep and painful. I have always said that I would rather be wrong on the things I know might happen in our future, than be taken by surprise and knocked off of my rocker when my head is turned. If I hadn't known this was in our future, I wouldn't have applied for MA and DD case management, and would have very few options for help now.

Often, when you work with a therapist or counselor, they put together a crisis plan. You are "preparing for disaster". This usually consists of how to keep family members safe when a rage occurs. Another aspect of disaster preparedness, is setting up the support system that you need to be as successful as possible with your child (all your children). For us, this included applying for MA through TEFRA, applying to the county for DD (Developmentally Disabled) Case Management, doing the counseling, the OT, the respite, etc. Many of us never went into parenting thinking these would be things we would be preparing for, or services that we would use. But they are vital to the success and safety of our children.

I thank the Lord for helping to open our eyes over the past several years so we are prepared for as much as possible. Many people prepare for disasters, but never need to put their plans into effect. Well, as I said, that would be awesome! But be prepared. I am by no mean saying that the mom who called me yesterday was not prepared. I think in many ways she was. Today, my heart is breaking for her and her daughter.


dorothy said...

I hear you on this...I would so much rather have a plan in place ahead of time that get smacked upside the head.

Anonymous said...

My heart feels for this mother and for all mothers, who have young daughters...We found out this Fall that my 15 year old Bonus Daughter had sex this past summer and we were devasted...We are sure she did it for acceptance and wanting to feel love. (Her real dad and mom have not had lots of involvement in her life - not in any sort of parenting role) And, the boy decided that when school started to share it with the entire school,which is the reason we found out....She was really struggling in school because of the back lash...Tough, tough world!!

Kelizah said...

We walk a journey that many do not understand, but I am grateful that you have courage to speak truth and love about having a child with a significant disability.

This is the only way we can expect to have change. So, while the journey is one of preparing for disaster, I commend you for educating and informing others along the way. This is not for the weak of heart..we must change the future and educate so that no more children will be disabled in this way.

To be unprepared is not helpful, to NOT speak the truth brings no change.

I am sorry for your pain, for mine, for the other mom who has to watch her child suffer.

Thanks for being a voice for our kids...


tracy said...

Kelly, I love your comment.