The future

Hello I am new here but thought maybe this site would help get the answers I need. Recently my cousin passed away after a house fire leaving behind 4 sweet little children between the ages of 4 and 8; 3 of the older ones with autism. Her 8 year old is severely autistic, he does not talk and is not potty trainer, he is very hyper and very strong. The other 2 girls 6 and 7; are completely different on the spectrum and I hope that one day are able to be more independent with guidance. Right now my family is caring for the children the best they can but I fear for the children's future. My aunt and uncle are in their 60s and I don't know how much of the exhaustion they are going to be able to take the older they get. My plan is to bud them a house so that they can stay together in our wonderful small community.....the oldest boys school even said we could get funding so they can come to him. At this point I guess my question is where do I start or is this possible? I feel that them having a hiuse accommodating their needs would help out a lot and we have plenty of people who would join in taking care of them. My dream is for something good to come out of this terrible nightmare that my family has gone through; any and all advice is surely appreciated.

  • check with autism speaks contact them and they should be able to help you with some resources. i have asbergers. ill say a prayer for your cousin and his family. god bless ari
  • I'm so sorry to hear about what happened to your cousin and the children she left behind. I think it's great the family wants to step up and take care of them, but I will warn you as a mother of a child with autism, it is EXTREMELY difficult and stressful raising a child with autism. They are normal people with wrong wiring. They don't seem to know how to communicate efficiently so when they are in pain they may lash out and become agitated because they aren't able to describe the pain they are in. I would definitely recommend therapy for they're most recent loss. They may not express that they need it--that's only because they literally cannot. ABA therapy and occupational therapy. And make sure the school does their part by doing a following the federal law. They must be evaluated by a speech therapist, a psychologist, a neurologist, occupational therapists, etc. And every year you receive the I.E.P. or Individualized educational program that outlines the goals for the child and what the school and teachers are doing to reach those goals. Your family will need help and those children with autism, most likely, will need long term care.
  • In reply to pamelah8402:

    I liked all the advice you gave, Pamela, and I'm sure you meant no offense by saying it, but as a person on the autism spectrum, I just wanted to point out that we are not wired "wrong"; just wired in a drastically different way from people with typical brains. This is not to discount anything else you said in your comment; just a reminder that just because it is so difficult and stressful to raise a child with autism, does not mean their wiring is "wrong".

    I think if parents can accept that it takes all kinds of people to make this world - neurotypical people, as well as people on the autism spectrum - and quite frankly, the world needs *both*, then I think children on the spectrum will grow up with a better sense of self-worth and a greater chance of overcoming the social awkwardness that so many of us are plagued with.
  • In reply to pamelah8402:

    Yes we are getting all the support that they need, they go to a school that specializes in Autism but this year the two girls will become independent and go to the school in our town. We all helped before so anything that is thrown our way isn't anything out of the normal. I know that they will need long term care so that is why I was wondering if anybody knew of any organization that help with funding to get them started with this process of having their own long term care housing?
  • In reply to ari:

    I did contact them and they want me to call them so thank you for the information keeping my fingers crossed.
    Kelley
  • In reply to Kerenina:

    I'm so sorry i said "wrong". I meant no offense by it. What i should have said is different.
  • In reply to pamelah8402:

    I know you meant no offense, Pamela. ;) Things are hard to keep in perspective when you're right in the thick of it.

    I am sure you want to show your son that you accept him as he is, including his unique brain wiring - and his realizing that you accept him completely will be key to his acceptance of himself and consequent emotional and psychological growth.
  • In reply to Kerenina:

    I love him EXACTLY how he is. Even though sometimes his behavior is hard to understand BUT I do know he's trying to tell me something. I read one of your posts yesterday, about when you shut down you need time to recover. My son just started intensive ABA and went back to school where he doesn't have any friends. He's been shut down. I took your advice and wrote him word for word what you said. "I don't know what's going on with you right now, but if you need space..... then i added how much i loved him and would always be there for him. Thank you so much for your insight and your brilliant way of explaining things in easy terms. I'm really glad we're talking!
  • In reply to pamelah8402:

    So am I, Pamela. :)  I can tend to ramble and go from one tangent to another, so it's hard for me to believe I have a "brilliant way of explaining things in easy terms," but I'm very glad you think so!

    The NT world can be a confusing, frustrating, scary place to navigate for an AS teen, and for me, not understanding what my meltdowns were, or the reasons they would occur, was equally confusing, frustrating and scary, because I was afraid there must be something terribly wrong with me as a person.  I got mixed signals from parents and teachers (on the one hand that they loved/supported me just as I was; on the other, that I had so many things that I needed to change about myself to be acceptable), and was all but invisible to peers (which for the most part suited me just fine, as it was always uncomfortable and disorienting to be in a group of people, as opposed to just having a conversation with one person).  So it took me far past my teens and on through my twenties before I finally started to actually accept myself.

    One constant through this time that I think finally paid off when I began to learn about Asperger's and the autism spectrum, was my father's unconditional love and acceptance of me all through the years.  I know my mother loved me, too, but it seemed to be her mission in life to try to change me, whereas she seemed satisfied and very proud of all the rest of my siblings who were popular in school, had great talent, and were mostly as bubbly and outgoing as she was.  The feeling I would get from her was, "I love you, so why can't you change these habits for me? Why do you have to be so difficult when none of your younger brothers and sisters would be like that?"  Whereas the message I got from my dad was just, "You're my daughter and I love you. Sure, there are things I think would get easier for you if you changed the way you do them, but you are more important to me than those things."  I had a hard time believing it all the time I was growing up, because my self-esteem was so low, I would dismiss it even while I longed for it to be true. 

    When my dad finally explained to me as an adult, what he learned about HFA and that if I researched it myself, I might find that I identified with a lot of it, I finally learned just how different I seemed to my parents compared to the rest of my siblings, and it was a bit of a shock at first.  But my dad patiently explained that all through my life, they could see that I was drastically different from the other kids, and even though at times certain habits of mine might have annoyed him a bit, he'd always just accepted me as my unique self, and would continue to love and support me, no matter what I chose to do about seeking a diagnosis.  That was when it sunk in at last, and I could think back over my childhood through to young adulthood, and know it was the truth: I really was loved and accepted unconditionally.  And it was around this time that I also began to realize that my Heavenly Father loved me unconditionally all along with even purer acceptance than my own father's, which finally brought me around to relaxing into that love and accepting myself instead of being ashamed of everything about me.

    All that to say, even if it takes well into your son's adulthood for him to realize that you really do love him exactly as he is, it is bound to break through to him eventually, just from your consistent affirmations of him through the ups and downs.  He may or may not see it now, but if he doesn't now, know that he will, and that when he does, I don't care what they say about our amygdalae and hippocampi, the resulting emotional and psychological growth will be phenomenal.