Hello, guest
Name: crofty
[ Original Post ]
Hi, I am the mum of 2 autistic boys. I would class my 5 yr old as being moderately autistic but my 4 yr old quite severe. He is non-verbal and spends most of his time, trying to fulfill his sensory needs by banging things with the palms of his hands, sometimes including me. I just wondered if anyone out there would like to contact me and chat about any of the challenging behaviours/problems they have dealt with.
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Name: aaturci | Date: Jul 15th, 2007 6:20 AM

Name: dianna | Date: Jul 15th, 2007 12:38 PM
Hi Crofty, when you say he is non-verbal, does he say anything at all or just make sounds and such? 

Name: crofty | Date: Jul 15th, 2007 7:58 PM
Hi Dianne, he just makes a few different sounds. 

Name: dianna | Date: Jul 16th, 2007 9:54 PM
Hi again crofty, I ask if he can speak because maybe some of his behaviorisms are because he cant communicate. My four year old is in the same boat. I don't know if he is moderate or severe. I do know that is it frustrating though. Mine does not speak either. Just a few words here or there. He is not potty trained yet, and loves to eat which is beginning to cause a weight problem. Does he enjoys toys or games etc? Mine really doesn't enjoy imaginative play. 

Name: crofty | Date: Jul 18th, 2007 6:47 PM
Hi dianna, you are probably right about some of his behaviours being linked to the fact he can't communicate. It does make it so hard sometimes though, I hope one day we can master using pictures to help him get his needs met.
Also finding toys that motivate him has been hard, he does like a big inflatable banana shape that we got him that he bangs and climbs on and roles around. Also he likes tickling games. 

Name: mom2twins25 | Date: Jul 26th, 2007 5:42 PM
Our son is a low-functioning autistic boy. He has never been verbal but he's full of moans and sqreeches. He always palys be himself. And people stare at us because he's a big boy, and he's in a stroller still. Sometimes I wonder what the future will bring for our Dominic but reality is nobody has those answers we can teach him as best as we can and get him the best early intervention programming there is here in Canada but the future is definetly hazy. I guess like every other family..we have good/bad days but at the end of the day, it's the kisses(which he just learnt to do) that make it worth it. 

Name: mom2twins25 | Date: Jul 26th, 2007 5:46 PM
I wanted to add something . After months of working with him, Dominic can do 2 signs...Please and More. He doesnt always use them. His professionals say that they're not sure if he knows the meaning of these words, but it's wodnerful to see him try. And he has an obsession with cars and wheels. But that's a 'classic autism' trait. 

Name: pevansmum | Date: Aug 22nd, 2007 2:05 PM
my 9 yo son is severely autistic...my aol screen name is evan45rj if you want to talk anytime...im here to sympathize with you and share experiences... 

Name: crofty | Date: Aug 22nd, 2007 6:47 PM
Hi Pevansmum, could i email you, I'd love to find more about your son, and maybe you might understand what i'm going through at the moment. Friends of mine that have autistic children are all more like my 5 year old so they can't always sympathise in the same way as someone who has a more severely autistic child. 

Name: asdmom | Date: Sep 22nd, 2008 2:26 AM
My son is low functioning asd, but he is 11 years old now and although he does not use speech to communicate. He can read a little and loves books. I bought him (although he has grown out of it now)
A powertouch learning system from fisherprice, its similar to a leap pad but better. Louis would repeatedly become obsessed with this book reading him a story all the time. He also became obsessed with the computer and now he is obsessed with his nintendo ds.
I have also oredered a glockenspiel/percussion for him which is basically an xylaphone. I always just tried to let my son become obsessed in appropriate activities rather than repeatedly rocking back and forth or hand flapping, as and when their obsessions center onto other tasks the really innappropriate behaviours such as head banging etc will finally minimise to none at all.
hop this helps. Just find little snippets of interesting things they like. 

Name: Mellissa | Date: Oct 11th, 2008 2:02 AM
Hi, I have a severe autistic boy named Jacob and he is 5.I am looking for advice from other parents because I have just about given up on the doctors.We've been through everything between diets,vitamins tests and about 10 different meds.I have no idea what to do.Jacob is extremely hyper,has no communication,he pinches and bites.His teachers don't know what to do with him anymore.He is very happy and I think he knows what hes doing but won't listen to anyone and has no focus at all. 

Name: crofty | Date: Oct 13th, 2008 5:56 PM
Hi Melissa, my son is extremely hyper ative too. He is constantly on the go from getting up to going to sleep, it can be exhausting sometimes! 

Name: Annmarie | Date: Oct 25th, 2008 2:33 AM
Hi, My son is 5, and he is moderately to severly autistic. We found out this year, so in other words we are new to this. Would to chat with someone. 

Name: stongandscared | Date: Oct 28th, 2008 2:19 PM
my son Aaron is 4 and is non verbal they are going to order him a go talk at school for him. but i sure would love to talk with others. email me at [email protected] 

Name: dalia_in_nevada | Date: Jun 18th, 2009 4:56 AM
I am writing you this letter in the hopes of some desperate
assistance in Nevada. I have a young Autistic adult son,
19yrs old, ( Vincent Ortiz ). I understand the dilema you are going thru.
You are not alone. I will be happy to talk to you any time, if anything
just to listen and support each other.
I will make this brief and to the point.
I am a single mom working many
hrs 7 days a week, savings is now gone in an attempt to pay
on my own for caregivers.
My son has severe "episodes" at which he can bite/scratch/pull hair or
all of the above. These behaviors all began over the last couple of
years and are progressively getting worse.He is 5 foot 10 185 pounds.
I am 5 foot 2. I can not restrain him when he attacks.
I desperately need HELP now.
There are NO group homes or facilities who take children and/or young
adults w/ Autism here in Nevada. The state treats Autism like it is a dirty word.
I am in fear for the safety of myself and my daughter as we have been
attacked a cpl times now without a caregiver here full time.
I was thinking there are several folks in the same dilema as myself
here in Nevada as well as across the country..
I would like to know if you could :
1.) assist with helping me open a
RANCH FOR AUTISM here in Nevada. Pahrump still has land low
priced and it's far enough out that folks who don't understand Autism
will feel comfy, yet it is close enough for medical needs.
I know exactly what these children need to make their life
complete and busy with a scheduled routine and space to roam.
I know that I could sucessfully provide the care and know how to
make it a wonderful structured environment for the children.

For instance:
an equestrian area
music program
arts n crafts
a green house
pool / spa
sand box
walking paths

2.) help / steer / assist me w/ getting some families
together that are looking for longterm placement for their
young adults where they will be loved and cared for as if we were there
ourselves. Home-like environment with plenty of activities to keep them
busy and fulfilled. We need 20 committed families that have a young adult
who needs the special care and guidance the Ranch for Autism will provide.
We all know as parents we can not be there forever for our loved ones.
I know I do not want my son to be institutionalized when I can't be there
for him any longer. Of course our children can have visits ( home or on site)
anytime. You may have the connections, knowledge to get this request
completed. You may know someone with acreage ( we need approx. 50 acres )
that needs a tax write-off, or a family member willing to donate.
Maybe help get a fundraiser, some attorney's, doctors, wealthy
folks. Get the community involved! I have faith in you. Together we can pull
all resources and do this.
I currently have an investor to meet/match up to $800K, which is about
1/3 of what we need to reach our goals.
Please contact me with any contacts / ideas that you may have.
God Bless!

Delia Power
360 Yacht Ave
Henderson NV 89012
[email protected] 

Name: jdpaige | Date: Nov 14th, 2010 3:33 AM
Hello, i have a 12 year old daughter that is severely autistic. She get very frustrated when people cannot understand her language and a tantrum begins. She is 5'5" tall and 145lbs. it is difficult to handle her at times. I had cervical surgery among other things and i had to sit out controlling her when she becomes upset. her mom and i have been bit, i was married and she was also bitten and punched. My advice is to address these issues NOW. You have 2 lovely children that are dealing with the same or similar issues. My email address is [email protected], feel free to contact me, have a blessed day, Jerry 

Name: Faith_Hope_Love | Date: Dec 12th, 2010 8:59 PM
7 years old and severely autistic, would love to talk to others that are dealing with agression and smearing. Please email me at [email protected] 

Name: kory7612 | Date: Dec 14th, 2010 1:47 AM
hello everyone I have a four year old daughter who is moderate to severe autistic. She has good eye contact and says a lot of words but we don't think that she knows what they mean. She has high anxiety and very high sensory issues. I am really frustrated and feel like I am helpless. Can't go anywhere. We do not live close to family so there is nobody to help out with watching her I am just lost please help my e mail is [email protected] 

Name: kimmers37 | Date: Dec 29th, 2010 1:08 PM
yes i have a son who is 13 , he is severly autistic ,, i love to talk with you ... one of my challenges is i have to work outside the home and that is very cha llenging for me .. my name is kim, we live in salina kansas .. my sons name is nathan .. you can call me sometime my number is 785 7879510.. hope to hear from u .. kim 

Name: leah m | Date: Jan 2nd, 2011 2:37 PM
Hi, I also have a 4 yr old, who is labeled as moderate to severe. I understand your need to talk, I feel the same way. All those socically accepted things you know how to do go out the door when you have a child with autism. Now there no rules and I am constantly apologizing or ignoring people when they notice my child behaviors or if she invades their space since she loves hair and candy, but doesn't understand that she shouldn't grab these things. Please call if you want to talk 731-234-1427- Leah 

Name: gg | Date: Jan 7th, 2011 6:50 PM
i have a 10 year old with classic autism. she was diagnosised when she was 2 years old. life has nevers been te same. i have had to fight and battle to get the services that is now in place for my daughter. 

Name: ladygwen83 | Date: Jan 10th, 2011 12:02 AM
I just found this forum today after searching for parents of children with autism. My 2 year old was just diagnosed. She doesn't speak mainly makes moaning noises and lots of different singing pitches. She's not potty trained. It is hard to go to the store or anywhere she doesn't handle large crowds of people well. I just wanted to try this forum to speak with other parents because I feel so isolated I don't like to take her lots of places because people tend to stare, I'm not sure how to react to that. I worry about what will happen to her when she is older if she will be able to take care of herself after I am gone. I was in denial for a long time that she even had a problem. I thought she was just developing a little slower but in time she would catch up. I guess alot of people do that. Then my mother convinced me that therapy would fix her and now I don't want to fix her I just want her to be happy. 

Name: Diane Simons | Date: Jan 11th, 2011 8:47 PM
I would love to chat with you about your sons... it must be so challenging to have two of them! I have an almost 16 yr-old who has had severe rage issues lately. He is very classically autistic , with very limited verbal ability.We also have dealt with seizures in the past year as well. Medications are necessary, but do not provide the expected results. What types of things do you have questions about? I feel as if we have been thru almost every situation with our son and I would be happy to help any way I can. 

Name: Lisa M Costilla | Date: Jan 31st, 2011 5:08 AM
My son dose the same thing he has even left brusised on me. It gets wors but if you would like to call me {559}429-4609 because I dont want to make any one uncomfortable. 

Name: VKaufmann | Date: Feb 5th, 2011 1:13 AM
I would. is there any way we could privately exchange emails?

I have a 2 yr old who was jut diagnosed and am sooo alone. It'd be very nice to have someone to talk to. 

Name: devansmom04 | Date: Feb 6th, 2011 11:49 PM
I have a 7 year old son thats severly autistic headbangs bites pulls hair keeps bruises on his head from banging on corners windows walls anything and he screams endlessly hes a sweet boy but its so much to take in he was diagnosed a little after he turned 3 the diagnosis wasnt as hard as the reality that theres little help out there and even less understanding its the hardest thing ive ever been through and now that hes older its even more scary hes nonverbal and people just dont have any info on complete nonverbal kids i wish u and everyone like us the best of luck and feel free to email me anytime [email protected] 

Name: erachael | Date: Feb 8th, 2011 2:56 PM
My son is 6 yr.s old and has gone through, what I like to call, phases of behavior issues.
such as:
glass smashing- we bought plastic cups
spitting- we covered his mouth and told him no
hitting- our daughter started to hit back and he didn't like that
yelling- we tell him to close his mouth and he will take his hand and pinch his lips shut
spilling- we didn't let him have a cup all by himself

Then there was potty training. I took him to the bathroom every half hour at first then increased the time. Now we remind him from time to time. The potty training took three years and he now goes to bed without pull ups. It has saved us a lot of money.

My son does verbalize himself freely and a couple times a day he means what he says.

Holding him accountable for his actions has made him more socially acceptable in public. Although, it is usually very difficult in public settings. When he gets bigger I think I am going to have to start lifting weights. He is already really tall for his age. His father is 6 ft 4 in. I have to believe before he gets to this height that I can mold him to have appropriate behaviors.

Melt downs do not happen with him very often, but when they do I ask if he needs a hug. If he just wants to throw a fit I send him to his room(or take him there). I try to treat him just like my other child. When he fusses I even tell him not to sass and to pick up his letters he spilled everywhere. I hope to God that this approach we are taking as a family will make him grow and develop so in the future he can contribute in whatever way possible to society. 

Name: rachel 911 | Date: Mar 11th, 2011 10:44 AM
hi am new to the site,i have a 5yr old son servere autism,soon be 6,as also learning problems.mind of a 1yr old,cannot talk makes sounds.when gets cross he bangs walls,bites you himself.to calm him down special school said to sit on sofa with him,with favourite toy,it seems to work,very loveing child. 

Name: littlemissy76 | Date: Mar 24th, 2011 9:58 PM
I came here because I was wondering the same thing...It is hard to have a kid with so many challenges. My son is turning 6, and is non verbal, still in diapers, and has no desire for social interaction. I feel very alone at times..but love my little man more than the world. 

Name: jim powelson | Date: Apr 3rd, 2011 12:55 AM
glad to be of help
the child needs a chromosomal test called
sky m fish test

the child has deletion syndrome

there is a book call Red flag planet earth on amazon kindle or kindle for pc's

1st 3 pages is free

there is instruction for the doctor and what to do

I know this will help 

Name: barbarag | Date: May 16th, 2011 2:42 AM
Hi, I am a 51 year old Grandma raising a severely autistc 10 year old. He is nonverbal, still in diapers and is very aggressive at times You may think he is loving on you and all of a sudden you get a bite. He bit me on the underside of my chin today, I have a whopping bruise now. I have a muscle condition which causes me to get weak. I don't know if I will be able to get him off me some days. My husband is 9 years older than me and is extremely tired. We both are. Here in SC they have nearly no respite care. We wonder if there was any, who would be able to take care of him? Would they get angry and hurt him? I worry so much about his future is something happened to us. I know we love him and tolerate his behavior due to his illness. What will other care takers do to him?Children that can't talk are the perfect victims. I hope someone has some good advice, I sure am in need of some. 

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