Need help for profoundly autistic son...any ideas?

JaneRooney - posted on 09/18/2012

Oh BTW...Fight! always fight!

JaneRooney - posted on 09/18/2012

Oh My! I just read your post and it could be mine! My Brian is non-verbal...in diapers...mentally retarded...He's 17 will be 18 in December. He just suffered a Grand-Mal seizure on Tuesday..never had anything like that...ever! Same thing...everyone perplexed by him always. I don't know what to do(can't trust proffesionals who have lost interest). So I am going to MY roots... research! Hence my appearance on this site. I have looked everywhere for support for my profoundly afflicted autistic baby. The babies they want not to discuss. non-productive...not $$$$ well spent. So this is what I am going to do...Social worker at the district level...in-school phychaitrist....Autistic society....Research ...get the best help I can for him...I WILL come back and let you know what I find...so you can help your Evan..I do know the difference! I promise when I find out I will tell you...Got you Jennifer!

Jennifer - posted on 04/22/2011

what sort of program is he in? the new ipad has tons of apps that could help your son.....I have heard miracle stories about that device...one of my son's classmates, totally non verbal (15 years old) was given one...his mom asked his a question..."what animals live in the ocean"?? she didnt think he was even aware of his environment....then, he typed out, "dolphins, humpback whales, and piranhas"....lol...so, he had a lot going on, just couldn't demonstrate it until he was given a way to communicate.....

Allie64 - posted on 04/21/2011

*tears*...My son is 18 years old and non verbal as well. His arms look like he has gone through a battle field or has been beaten with a baseball bat as he constantly bites himself, all hours of the day....that is if I don't catch him and prevent him from it. He is a very small built boy and only weighs 108 pounds so I am able to restrain him most of the time. But where to get help for him? I am clueless. We lived in a very small town for 5 years and there was little help for him there. Since then we have moved around because of my husbands job and help was difficult for me to find. My heart goes out to those ladies who have similiar situations as my days are full of stress with him until he goes to sleep, which is around 3:00 a.m. in the morning. I have three other teens (non-autistic) who's lives have been so effected by this as well. I have little time to do much of anything with them because of my son's constant frustration. He cries deeply sometimes, a deep, mournful weeping and sometimes cries "Why or Who did this to me" but no other words does he speak on his own. I love my son...very much....but I HATE Autism!! I believe in God, but most of the time I am so angry with Him as to the 'why's' of this affliction that my faith has become little. Whom do I turn to....where do I go...or should I just accept this way of life with my son's disabilities and live each day in depression and stress. Social workers?....No thank you. My son had a social worker who managed to bring someone to my house ONCE a week to work with my son, and after not even a month, she quit saying they didn't pay her enough to do what she was doing. I am so very tired, worn out and feel helpless to help him. God forbid if something happens to me, what would become of him.

Renee - posted on 04/06/2010

Ladies - I did some looking for non-verbal autistic AND ironically came across a new documentary on autism. Google - HALO - Soma. It's an amazing method of communicatng with the totally non-verbal autistic child or teen. They are based out of Austin, TX but the program is available on their website. The documentary is from HBO - A Mothers' Courage, Talking back to Autism. Good luck!

Jennifer - posted on 04/05/2010

Brenda: Finally- someone who gets it. I don't think anyone can imagine our situations- wanting to carve out a joyful life while dealing with daily grief- the loss of our sons. I know that sounds terrible, and I love my son and try to maintain humor and affection every day- but I grieve for him and for my family.
My son is very similar to yours, but is only 150 pounds- I can still control him a little bit. Not much, though. And my son is not toilet trained in any rational sense. I have to give him enemas every other day (for the past 10 years) to produce a BM. It is very hard to administer and very hard on him- painful.
I do feel a sense of calm- just knowing you understand. I probably want "out" too, but am too busy to focus on that desire. I know how much you love your son- it's like taking care of an innocent newborn in a big body! I had 2 more babies, much later in life- two more sons! They are just normal babies- and the pleasure is enormous. Everything they do is so easy to handle!
I hope you will keep in touch. jennb555@aol.com

Michelle - posted on 04/04/2010

You are in my prayers!!!!!

Brenda - posted on 04/04/2010

Jennifer: I know how you feel. My son is 18 and is the most severely autistic person I've ever met. He is non-verbal, physically agressive, self-abusive, has gastrointestinal problems,only number one potty trained, smears his feces daily all over my house, behavior problems that prevent us from going anywhere or living any kind of normal life----you name it, he has it.He is 6ft -200 lbs. I lost control a long time ago. While I can appreciate other's advice to find respite care, the fact is that no one would last a day here. No one would do this for what little I could pay. Nor do I trust anyone not to hurt him back after he bites them or scratches their eyes. Who would stay? I know you love your son as much as I love mine. I haven't found any solutions either. But the only thing that gets me up in the mornings is the fact that he loves to be loved. He smiles, runs and plays (in the mud) outside, and he gives the best cuddles and hugs. I'm sorry I don't have any answers either. I just thought you might like to know you're not alone. I know it feels like everyone around you is living while you are stuck in the big black hole. It hurts and you feel a loss for your life and your son's life. One day at a time. That's how I do it. If I got through today, I can get through tomorrow. And I never usually tell anyone when they say I'm a great mom...that I want out of it more than anything. I just smile and say thank you and get on with it.

Sheila - posted on 01/12/2010

Hi JEnnifer,

Where are you posting from? I know what is available in Ontario, Canada but that might be of no use of you.

Like Renee, I would look into a respite worker. I know many educational assistants who do this type of work to supplement their wages (SEVERELY underpaid here). You want someone with the educational background, not just a "nice" person.

Try to get your son to bring you pictures of what he wants. Post the pictures, so when he throws your arm or drags you to where he wants to go, take the picture, put it in his hand, and have him give this picture to you. Do it hand over hand style.

Get him a little photobook of common wants. Picture of milk, treat, toy...keep it simple...maybe three to begin with (or even one). Try to see if he can make that connection.

Good luck to you and your son.

Sheila

Renee - posted on 01/11/2010

I would strongly recommend that you get a trained respite provider and/or habilitator. You can get this from an agency if you are in the U.S. (I don't know where you live). I would get a referral from your social worker. These people are trained and should be able to learn your sons' needs and his way of communicating by watching you and then you can have at least a little bit of the burden lifted from your shoulders on a regular basis. You need time not only for yourself but your other children.

Bonnie Jean - posted on 01/11/2010

http://www.ipsiiinc.com/
The mother of this non profit has a young man now in his 30's with profound Autism. She would be a wealth of information for you. Another web site that might be of interest to you is: www.mnddc.org , it is a site on developmental disabilities and best practices it is used internationally because of the information it presents to its custormers, everything is free on the site. Knowledge is power.

Jennifer - posted on 01/11/2010

My son is 16 years old. He is nowhere near sign language; he does not even mimic others, so sign language is out of the question. He does not use picture cards either- he communicates by pulling me toward what he wants and throwing my arm toward it (like the pantry for snacks).
I don't know any kids in the area as severe as my son. We now have a toddler and infant, both boys, both normal. My big sweet teenager is the one I am worried about; I trust no one to care for him so it makes life very hard.

Rhonda - posted on 01/10/2010

is your son 16 months or years? I would suggest using sign language with him. I have had experience with children with autism and I used sign to give them an option of communicating wants and needs. It lowers thier frustration level to a point that helps them feel connected and relaxed.

Fiona - posted on 01/10/2010

my son is 3 years old u are alot further ahead with this then me, i'm scared of what jayden might belike in the next couple of years when he loses it it goes on for a long time he lashes out at me alot . i guess all you can do is have hope and get what help is around for him, it's so hard keep doing what your doing best of luck for the futuer