Just an update here

[Guest guest]

Hello everybody, I see there are a number of new people here and want to welcome you all.

My name is Carolyn, I live in Oregon, and I am the mother to a grown son, Marty, who has had autism all his life, and also seizures, behavioral issues, etc., developmental disability but they don’t call it that anymore. In fact his social worker was out the other day and said the new term is: “intellectual delay†think that’s right but delay sounds wrong. It will come to me. Two of them came out from the county to assess our needs for possible additional services since I am now 70 years old. They pay me to take care of him in my home.

Anyway my son is 47 years old now and he has a lot of issues over the years. I have always had him at home, long before I ever got paid for it, and try my best to keep him clean comfortable and “stable.†Everybody who sees him says he is “very well taken care of.†He doesn’t speak anymore, hasn’t for many years, and has been on a food tube for about 11 years. Does not walk on his own, and wear Depends. I have a helper and we get him up each day, bathe him, dress him, and put him in his chair and hook him to the food pump. We get him up and walk him to the bathroom a couple of times a day to sit on the toilet for his bowel movements, then put a new Depends on him. Between these spurts of activity, the three of us just kind of sit here and live our lives together, go out in shifts to do things, or together, to church or to the doctor.

I have four children in all, and seven grandchildren, and my youngest grandson, Lucas, we have found also has autism, I think Aspergers, although his doctor who has tested him thoroughly said it is “mild autism.†He has some quirky issues, is afraid of toilets, is a picky eater, can be very hostile when overloaded, and very polite and sweet. He 7 1/2 now, and in 2nd grade in public school. He has not done too well in actual school work I think because he has trouble understanding the instructions, has a speech therapist there to help, and goes once a week to a place that does Occupation Therapy, to help with his vestular problems. Don’t think spelled right, something in his brain that causes him to be off balance, etc. ?

Mostly he is just a brilliant beautiful little boy with an amazing art ability and he draws many amazing colored pictures with pens, mostly of the alien movies he so dearly loves. “War of the Worlds,†etc. He has several models of tri-pods, etc. that he and his mother built and painted. He’d be so mad at me I don’t know their names perfectly right now.

Most pressing right now on my mind is my grown son Marty who has been sick vomiting going on three weeks now. We have had him to the ER four times, to have a test where they put barium through his digestive tract, nothing wrong there, and to his gastro doctor who seems to be clueless. He is on a drug that is supposed to prevent vomiting that works pretty well, Zofran, they use it for chemotherapy patients. But if I lapse over 6 hours he throws up, which he did this morning in his bed again. I am so upset because I thought maybe it had passed. We’ve had many diagnoses from ER; food tube misplacement, constipation, virus, vomiting, duh. He’s had blood tests and chest x-rays and nobody knows what it is, and we’ve had to take him for IV fluids several times now.

Also my oldest son Tom is very sick. He is not autistic I don’t think, but was an alcoholic for thirty years but quit drinking two years ago, and now he has an abscessed tooth which I am taking him to the dentist to have pulled today, has diabetes is flaring up, and he is on lithium for bi-polar and has terrible anxiety of which I am sharing his brother’s prescription Ativan with. Good for anxiety.

I didn’t plan to make this so long, figure it is mainly a vent, or a rant.

Just have to keep going one day at at time and keep the faith, made it THIS FAR WILL MAKE IT TODAY, and tomorrow and the next day!!

Thank you all for listening,

Much love from Oregon, Springfield,

Carolyn ;o))