Blood and Tears

Just a general discussion and some support here.

My daughter Araya has autism. She is basically in the middle of the spectrum. I have been very patient with her and giving her more attention.

I just feel like everything I do isn't good enough for her.

Tonight she woke me at 4am. She wanted to come out and play, but I know this means playing with the cats and the older man staying with us.

I drew the line and put her back in bed. But now I feel all mean about it, but geesh, some us of need our sleep. Her parents included.

Am I being evil for sitting here and listening to her cry to sleep?

Or should I feel like a complete jackass of a dad?

I know i shouldn't question my dad skills, but God, I have to draw a line, don't I?

My 17 year-old grandson is autistic. He is an amazing person. His parents say they don't think he sleeps at all.

He had problems understanding others' needs. A few years ago we took him for lunch and then DVD and book shopping. He wanted to go shopping right away, and I told him, "Grandpa is much happier shopping if he has lunch first." My grandson smiled and we went to lunch.

Previously when he came to our house, we would have a room set up with a TV and a place for his books and DVDs, and he would be happy. Trying to get him to participate with the family was not possible, and if we tried, his parents would have to leave and go home, because he would be so disruptive. So we tried to determine what made everyone happy.

Lately he has decided to enter society. He loves DVDs and can tell you who played all the parts and who directed them and what the actors and actresses did in real life. He became interested in World War II, and one time picked out 50 books at a used bookstore. My son said they would be read within a few weeks. Again, he remembers all he reads. He has not been to school since first grade since he couldn't handle the noise and activity.

Watching him grow up has been very interesting. He has decided to come out into the real world and remembers who we are, although we don't see him often, and in the past he would always ask, although he can tell you the names of Hitler's general.

I think he is becoming a delightful young man with a funny sense of humor. What will happen next we do not know.

His parents have had to take a fine line between his needs and theirs, between forcing rules upon him and understanding what he cannot handle. He could not handle school, being with lots of people, certain foods.

Last Thanksgiving he spent the entire day with our large family. He told people stories from the books he had read, over and over. He asked, "How are these people related to my Dad?"

It has been a frustrating, fascinating journey for his parents and family.

Take the journey MJ. Yes, others have needs. It just takes autistic children a little longer to realize them.

Love, Carol

My nephew is autistic. He is in his late twenties now.
When he was growing it was the most challenging time in his parents life. But now he has become a wonderful gentle and caring person. Consider all that pain and frustration as an investment for the future. Don't give up it is worth it in the end.

This weekend my 17 year-old autistic grandson was here. He brought his videos for his grandpa to turn into DVDs although he is not sure how this is going to work. We make an annual trip to the used bookstore and he purchased over 100 books and will read them within a month or so.

His parents and brother and future sister-in-law were here to help take out the pier and boat lift and I always take them out to eat afterwards.

My grandson doesn't look or act like other people. He bounces when he walks, does not see well, has a glass eye. He was premature and much of his problem is due to that happening. He draws attention because he is different. It is interesting to watch people's reaction. At first they look very serious and almost afraid, and then they look at us. We are all smiling and happy and accepting and as others see that, they seem to see my grandson in different eyes.

He behaves better than some people in restaurants, so that is not the problem. He ate cheese curds and fries, not the healthiest food, but his choice. He took one of his one hundred used books along and read while waiting for his food.

He is different. He is brilliant as he remembers all he reads. In the videos he watches he knows not only the characters but the actors and we had a long discussion about which actors were dead and which alive.

Sometimes I think it is the rest of us that are different, that he is all right.

He will turn 18 next month. I think his brilliance, his ability to remember and sort details could bring him a job.

He excitedly told me how he is going to get dressed up to be in his brother's wedding next April. He will not be hidden away in a pew by himself. He will help others find places to sit.

I think he is pretty amazing.

Love, Carol

9/28/2009

MJGoodnow...

No, I think your being a good parent ! Autistic
children are very special, if you read Carol's thread about her
grandson..I know a PA author who wrote a book about her
autistic husband , I think he's now in his 30's and that book
opened my eyes to autistic people, they are very special and
talented.

Carol...

Your grandson sounds like a joy, not many
children can remember many things, he's special for him to
remember like that is a miracle and I know these children
are very talented , God Bless these children...


Cheers...Joe..

I think you need some sleep. I don't think you are mean. In order to care for your child you need to take care of yourself.

Too many people have no routines whatsoever for their chidlren.

Your autisitic daughter needs to eat, sleep and shower. These are normal activiities for anyone.

Perhaps you could put a lullaby dvd on for her to watch in her bed while you sleep.

Don't feel like a bad person--children can be tryng. This link may help.

http://www.webmd.com/brain/autism/helping-your-child-with-autism-get-a-good-nights-sleep

That was a good article, as well as another at that site.

I have seen all those characteristics in my grandson. One time he was staying at our house and the electricity went out. Although I brought out flashlights, he became panic stricken and nothing could calm him until we all went out in the car and found a fast food restaurant with the lights on. He only went to school for one year. He could not handle the noise, lights and confusion of school.

I think it is important to realize how panic stricken and fearful life can be for these children. In time and with encouragement they can learn how to deal with these fears. Now we go to movies with lots of noise.

In the article it spoke of going where the autistic person is. I think this is really important. They spoke of how then the parent can bring the person slowly into our world, after knowing what his/her world is like.

My grandson loves dragons and has a binder full of pictures. He sorts and wants things in a certain order. He says sleep is a waste of time.

He can read a book and have a movie on the TV at the same time and can understand what is happening in both.

Carol

Joe - was that book a PA book? At one time she used the id Big Berth evans? She has changed her Id I think.

I agree about the parenting thing. I also think questioning our parenting skills is a healthy sign of recognizing we sometimes need help figuring out the best approach.

I had a little play group where three or four mothers and their children met at the playground and compared notes while the kids played together, several ages. The differences in our parenting were downright amazing!!! We were all trying to do the right thing for our families.

With my six children, I tried to fill a role of "good mother." Later I realized the best I could do was be a "good person."

I am so glad that parents are more child-oriented now. The children are better off and so are the parents.

Balancing needs is always good. You have a need to rest, your daughter has a need to be awake and play.

Don't go on a guilt trip beause you are tired.

Parents are tired. It goes with the territory. I am glad you are considerate. Stay that way.

9/29/2009

D.K.

Yes that was Bertha Evans, great story..

Cheers..Joe

Bertha Evans had an atitude that would not quit.
She and her husand were incredibile in their optimistic outlook and approach to life.

If everyone had an ounce of their gumption, the world would be a far better place.

I appreciate the help. I know it is trying but I am doing my best. I also appreciate the links. Thanks!