Sibling of autistic child dealing with death of a parent?

Question

I am 21 years old, and my younger brother Alex (13) has autism. He is high functioning and is very independent. Our mother is in the hospital with Ovarian Cancer, which from my understanding does not have an overly positive prognosis. My father is not much good in helping with the autistic education/school-parent connection. I've told my mother many times that I would take care of Alex when my parents pass, and that i would stay living at home in order to help will bills and companionship for him. I feel that if my mother passes, the time will come for me to take on a lot of the issues she had (school, IEPs, etc.), and I will be pretty much on my own with it.

Anyone with similar experience care to lend me any advice or tips? Are there any books out there that cater to a similar situation i am going through?

Answer 1

Justin,

I am really sorry to hear what you and your family are going through right now.I wish there were words I could say to make the pain less for you.I can't say I have been through a similar experience to give you tips but can relate to your story on different levels.

I have two children,one with autism and one a few years older,who like you,has promised to take care of her brother in the future.A few weeks ago,the doctors thought I may have cancer.While in the hospital,my children were my only thoughts.I was lucky,and did not have cancer after all but I can tell you that your Mom is getting great comfort in having a child as loving and responsible as you are to be there for your brother.You should be very proud of yourself but don't take on too much.Maybe if your Dad has to step up where your brother is concerned,it will motivate and help him get through what he must be dealing with now.Work together and be there for each other.I hope you have a good friend you can talk to.Friends can get you through times like these.

Also, I lost my Mom, very suddenly, not too long ago..Not a day goes by that I don't wish I asked her,or wish I told her "something".Talk to your Mom about anything and everything.What she liked to do as a kid,her favorite color,how much you love her.I wish you much strength,peace and hope.

www.ovarian.org may be a source of help for you.They have state chapters,support services and resources  that may help you and your family.

Answer 2

I can't give you any real advice, but I think what you want to do is admirable. A child in my daughter's class a few years ago was very disabled, autisitc and multiple other problems and the day his mother died his father gave him up to be a ward of the State. Ask your mom right now, what she wants for him so that you have a goal in mind. She may have an important goal in her mind for him and it will ease her worry if someone knows it. Also, knowing what your end hope is for him will  help you when/if you are the one to go to the IEP meetings.

Answer 3

I am so sorry for what you are going through now..please know I will keep your family in my thoughts during the holiday season and beyond.

What you are wanting, willing and realize will need to be done is a positive thing.  However, there will be a few issues that you may need your parent's to help you address so you can help your brother, especially when it comes to dealing with the schools.  You are not your brother's gaurdian and therefor can not sign any IEP's or other paperwork to change or affect his current or future education plans.  Only a parent or legal gaurdian can, which means your father will either have to contact the courts and arrange for you to have a legal power of attorney in these areas or have to attend these meeting himself.  I will be honest in that I think it is time he step into the role of addressing your brother's needs as you are still young and finding your own path in life.  However, you know the likelihood of that happening so if you truely feel it will fall to you no matter what, then approach your parents now about arranging it.

The next thing to do is familiarize yourself with his current IEP and introduce yourself ( if you haven't already) to his teacher's and the staff he works with.  If they have not been told of your mother's illness, they should be.  This both gives them an understanding of any behavioral changes they may be seeing now and any that may occur later on if your mother passes away.

I would also contact local autism awareness and support groups, as well as support groups for families with terminally ill members.  They will be the best ones to understand what you are dealing with now and facing later on.  YOu may also want to consdier finding a therapist with experience in working with families of children with autism.  They can support you and give suggestions on how to cope with the feelings your brother is more than likely experiencing but may not understand, as well as help you understand things like eval tests, IEP recommendations, etc.

Answer 4

I took care of my brother when I my mom died. I.E.Ps and the whole thing. Just wanting to do it will get you through. Good for you. It was the best time of my life. My brother has since died from a brain tumor. I miss him so much right now.