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Name: crofty
[ Original Post ]
Hi I am the mother to two autistic boys the youngest is very severe.
We have just come back from from a holiday at the seaside which we found quite stressful at times.
He is non-verbal and does not understand alot of things which causes him distress.
We took him on the beach, and all he did was crawl round and round in circles on the sand whilst attemting to eat it.
I know i shouldn't be bothered what other people thought but I couldn't help it. He is 4 yrs old and quite big for his age and stuck out like a sore thumb.
I am also worried that in the future as he gets even bigger i won't be able to cope. He is so strong now and pulls my hair and smacks me. He isn't doing it in a hurtful way, it's just he likes deep pressure and forceful contact.
Any advice would be much appreciated.
Has anyone out there had to put there child in care because of a similar situation or have things improved with time.
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Name: dianna | Date: Jun 12th, 2007 12:59 PM
Hi Crofty, my son is also 4 almost 5 and people look at him too at times, and yes it does bother me. I don't know how it doesn't bother people. It's not that I'm ashamed, it's just a constant reminder that they are not typical, and as a parent what could hurt more. On the other issue of puttting him in a care service, what kind of intervention is he getting now? Because I think and I may be wrong here but he is so young that intervention aba, etc. could do wonders. Is he so severe that a program of intervention would not be able to help him? 

Name: mondo | Date: Jun 12th, 2007 7:45 PM
It isn't easy to ignore onlookers at times but after 19 yrs with my son i have kind of mellowed with his standing out at times; the ones th
at bother me are those who out of pure ignorance shake their head at him at times.
With your little 4 year old there is much you should try with him now that Autism is in the forefront of the news and more and more help available. My son used to be that way too when he was around that age, scratched my wrists, wiggled out of my grasp when trying to leave a place, tantrums, etc. He has progressed in many ways yet there is always a new phase he goes through, the autistic mind is unique and can be insightful so try to find a way to not get to the point of desperation when he is being difficult, he and you (those who care for him) will have to find ways to work together and there are many who can help: schools, autism specialists, other parents, doctors can connect you with others. Good luck and be strong for the little guy, he needs you more than you know. 

Name: crofty | Date: Jun 12th, 2007 8:49 PM
Hi dianna i have a support worker who comes once a week, she is there to support me and we try and do simple start and finish baskets with him. Also at nursery he has a one to one tutor who is just starting to pecs at a very basic level with him. Do you have any other suggestions for intervention and thanks for replying it makes me feel less isolated talking to people who know how i feel.
Also hello mondo, i hope that in time i too can become more mellow. I will try and be stronger, it 's just tough when you aren't seeing any progress at all just more bad behaviours.
Thanks for your support. 

Name: jojojohnson | Date: Jun 14th, 2007 4:56 AM
hi, i have a 7 year old autistic child. when he was 4 we took him to the beach, and all he did was crawl around, eat sand ,, and hit. when i tried to remove him from the beach, he clawed at my neck, and i had big red scratches all over the place. not only did people look at me in a bad way, but when i got back to our cottaqge and looked at the marks on my neck, i cried! it was a horrible experience, i felt like a bad mom. like i could not control my child. its something i never want to experience again. but i have to say, a few years later, this child is the most loving patient child ever! he listens to rules at the beach, and if i tell him its time to go, he may not be happy, but he goes.

this did not happen overnight, it has been a long hard struggle, but i can tell you. with therapy, love and understanding, we can make a difference in these childrens lives! 

Name: crofty | Date: Jun 14th, 2007 9:51 AM
Hi Jojo,
thanks for your positive words. It's so good to about the positive turn around in your son. My little boy is non-verbal, i don't know if he will ever speak, i don't think he will but i am just going to try and work on him understanding a bit more, but it is a struggle like you say and i hope that in time i can make a difference however small. 

Name: JenJack | Date: Jun 17th, 2007 1:29 AM
Hi Crofty. My autistic son is 3. He is actually one of the happiest kids I know. Always lots of smile and hugs for everyone. Last year at this time he was pulling my hair out and hitting us when we would leave the beach or playground. He has improved 100% with transitions. Picture cues and saying "bye, bye" to EVERYTHING seem to really let him now activities have come to an end. If your son is receiving OT ask the Therapist about "Therapeutic Listening" CD's, they have worked wonders. As far as the people staring, try not to let it bother you. I was to the point where I just would look at the person staring give them a big smile, shrug my shoulders and let them know that he is autistic. They feel badly because they were assuming it was bad parenting. People really just need to educated and they can't be if we don't speak up. It is a shame that so many of them are so judgemental. Try to be strong, I know it is very hard. Lots of tears and gray hairs come with autism. Try to find your sense of humor as often as you can. It is ok to laugh at some of the things our kids do. Remember, they do not know they are autistic, they are just doing their thing. Alway around if you need to talk!!!! Jen 

Name: ZOOM | Date: Jun 17th, 2007 1:34 AM
whats going on with him? 

Name: ZOOM | Date: Jun 17th, 2007 1:43 AM
I know everyone tells u don't worry what everyone thinks, but that hard, I actually like to educateg the "spectators" of my children, especially when they look & make comments at my 2 children with autism I have began passing out business cards that say please bear with me, my children have autism and to learn more go to blah blah website (my local autism info site), people need to be understanding because with the way this epidemic is growing sooner than later its gonna hit home with them! Chin up. 

Name: JenJack | Date: Jun 17th, 2007 1:55 AM
I agree Zoom. I will tell a complete stranger all about his therapies, his ups & downs, etc etc. I love to talk to people about it and enlighten them. When anybody asks "what is "wrong" with him? my reply is "there is nothing "wrong" with him, he is just autistic. We need to realize that we are ALL different, The majority of all of us don't fit into the square box that society has for us. 

Name: crofty | Date: Jun 18th, 2007 7:59 PM
Hi Jen thanks for your advice, I might try your bye bye technique as that might work for him. I'm glad your little boy has improved so much it's great to hear positive stories. I will also ask about the cd's you mentioned.
I also agree about the many tears that come with autism and the grey hairs give me a good excuse to pamper myself and get my hair coloured at my local salon!!!!
Thanks again for being there, it means alot I know a few people in my area with autistic children but none as severe as my youngest. 

Name: crofty | Date: Jun 18th, 2007 8:06 PM
Hi Zoom,
I like the idea of the business cards I might use that myself if you don't mind.
We went out for a father's day meal yesterday and they would have come in very handy for the many ignorant people who stared at us all through the meal.
Thanks for replying. It means alot. 

Name: anonanont | Date: Jul 20th, 2007 1:05 PM
Mine is 18 now. Please email me. I think I can help you. He may benefit greatly from sensory integrative therapy, sensory diet (sensory not food). Your son is hypotactile... I'm wondering what else he is. Send to: [email protected]
I'm not soliciting. Email has nothing to do with autism. I use it for my eBay store where we give proceeds to various 3rd world charites. It just happens to have no limit on how many emails it can hold. Subject it autistic child and I'll know it is you. Holly 

Name: jennmom1 | Date: Sep 11th, 2007 3:51 PM
For all of you parents out there that have had to experience the nastiness of ignorant people pointing, shaking their heads and other rude behaivor; this is what I did: Go to your local Staples, Kinko..wherever and have some business cards printed out (they're pretty cheap) and have them print on them this:

My child has Autism. There is a reason for their behaivor and we as parents are doing the best we can. We are following the instructions of our childs intervention team. If you would like to learn more about Autism and educate yourself please call: (XXX) XXX-XXXX (put your local regional center # here)

This is such a fun way to say f - u to rude people without actually lowering yourself to their level. I have never had even one person be able to respond after I hand them a card. They are so ashamed of themselves.

Good luck!...and forget about those jerks who don't understand..all of us here do!


Name: irish Amy | Date: Sep 11th, 2007 8:18 PM
Hi Crofty, I hope things have gotten better since you made this post, how is your other son was he ever that severe? I have one of those buisness cards also I got it at the early bird, I never had to use it as I generally try to ignore the onlookers but if I cant I just stare them out, a mum I met at the early bird did give one out and the man followed her around the supermarket apologising all over the place, she also has two sons with autism and recently was going on holiday so she got tee shirts printed with '' I'M NOT NAUGHTY, I HAVE AUTISM'', lol. When we go to the beach my son likes to sit at the edge of the water and throw the sand, he would sit for hours and gets upset when its time to go, I just make sure that we are going somewhere nice like macdonalds and he calms down quicker then. He started school in a unit attached to the school 2 wks ago and he loves it, I've already seen a difference in him, its great. I like the sound of that Sundown you mentioned, I'll have to look that up!! 

Name: crofty | Date: Sep 11th, 2007 8:47 PM
Hi irish Amy, my oldest son was never as severe as my youngest son, but I am really trying to stay positive at the moment and believe that when he starts at the local special school 9-3 easter next year, things will improve and he will progress forward a little.
Thanks for your caring words.

Name: irish Amy | Date: Sep 11th, 2007 9:09 PM
Hi Tracy, I can only say bout my son obviously but since oct last he was having home tutoring and he came on in leaps, still not very verbal but better than he was, the ASD unit he nows attends is fab, and he started speech therapy yesterday ( attached to the unit ) and I'm hoping it wont be too much longer before he starts OT. What age do they take the kids there? 

Name: crofty | Date: Sep 12th, 2007 4:25 PM
Hi irish Amy it's great to hear your little boy has come on so well since starting in the unit, these kind of things mean the world to us as parents, because of the extra difficulties our children have. It gives me hope for the future. As for the OT, my little boy started it about 6 months ago aged 4. I think the age you can start depends on each individual case, how old is your son? 

Name: irish Amy | Date: Sep 12th, 2007 7:30 PM
Hi Tracy, Callum is 4 1/2 and he so badly needs OT, he sat in the bath tonight and said monday tuesday with a huge smile when i asked him if he was going to school tomorrow!!!!!! must ask if they are doing the days of the week ! 

Name: corysmom | Date: Oct 29th, 2007 2:17 AM
my name is barbara, and i have a 5 yr old son, who also is on the server side of autism, and my heart went out to you, because we are having the same issuses with my son, he also pulls hair, hit, spits and ect, if you find out anything that might help, please let me know............im so concerned and honestly depressed. 

Name: crofty | Date: Oct 29th, 2007 5:57 PM
Hi Barbara, hope you are doing ok.
I don't know if this will help you in any way but i have just done a course called sensory issues and asd and it has helped me look at my sons behaviour a little different. It has made me realise how much of his behaviour is linked to the senses and how to help him function he needs us to control his environment to try and prevent overload causing problems. It is all quite complex and specific to each individual child. I don't know if you feel your child has sensory issues, but if he does i would definitely recommend seeing an occupational therapist who would help you assess your childs needs and give you strategies. Also I the nas has factsheets on lots of things and there is one which explains how to try and avoid the trigger that kick starts the behaviour.
Hope this helps if you want to chat about anything more specific feel free to email me [email protected] 

Name: lucy62 | Date: Nov 14th, 2007 5:34 PM
I know how it feels to have a child that cant communicate, as i have a 12 year old who cannot let me know what is going on in his head. At times i have to let him escape to his bedroom, which is his safe area. he gets very frustated because he cant make him self understood.
when he was younger my partner and i did have problems because of his behaviour, we showed him a lot of love, we gave him lot of time and especially comforting attention, this seems to reduce his violent tendencies, they don't go away completly but they do reduce in frequency. As far as other people's looks it is something that still happens today, its still upsetting sometimes but i have to forgive their ignorance and just do my best for my son.
I wouldnt change any thing about my son as he has his own unique way of showing us love.

Hopeing this helps

Name: crofty | Date: Nov 14th, 2007 7:09 PM
Thanks Lucy I'm glad that some of your sons behaviours have reduced a little over time. You sound like a strong fantastic mum and I thought that the last line of your post was extremely touching.
All the best. 

Name: BlakesMom | Date: Nov 15th, 2007 12:28 PM
Hi. My son sounds a lot like yours........and yes, the stress can be nearly unbearable. There is hope......my son has made so much progress receiving therapy. He has been receiving Early Intervention Services Since October 2006...Speech, Occupational Therapy, Developmental Therapy, Behavioral Therapy and my husband and I are receiving familly counseling. This is provided through the state of Illinois with only a small family fee. Are there any programs available in your area? When therapy started, he was very self abusive, agressive towards me and completely withdrawn - never gave eye contact or engaged in anything I attempted. His sensory need were exhausting......deeppressure, movement, etc. He now is NEVER self abusive and may only exhibit 3 aggressions per week. He is making unbelievable eye contact, engaging, initiating socialization (play) and kissing me (that took a year of work). He is still very Autistic....don't get me wrong, but considering where we were a year ago, he is doing fabulous. The big change came when his neurologist put him on very small dose of Resperdol. Along with the therapy and the meds, he has made huge strides. And, my big change (emotionally) when my doctor prescripe Celexa. My son will go to school in February......an Autism Program as the school districts in Illinois are required to provide service at the age of 3. Intervention works.....so make sure you utilize anything that is avilable to you. Hang in there! 

Name: crofty | Date: Nov 15th, 2007 9:06 PM
Hi Blakes mum thanks for your positive words, it is fantastic that your son has improved so much, and that you have all those services available to you. We receive occupational therapy, but nothing else at the moment. Although there is a psychology team in my area that are willing to do a few sessions with him but i don't know what exactly it will entail.
I think in Britain we are so far behind the states in the differentt kinds of interventions, and only just seems to be discovering how many children are actually affected.
Could you briefly tell me what happens at development and behaviour therapy.

Name: BlakesMom | Date: Nov 16th, 2007 1:52 AM
Hi! The devlopmental and behavioral therapists mostly use Applied Behavioral Analysis and Discrete Trial Learning approaches with my son. Research these terms if you are not familiar with them as these techniques have been very successful with my son. The main objecive is to get him to participate and interact in the sessions. They use a lot of pretend play scenarios and/or just trying to get him to play appropriately with toys vs. just self-stimulating with them by lining them up or shaking them in front of himself side-by-side. My son is also non-verbal and we have determined that the Picture Exchange Therapy has relieved a lot of his frustration as he now has a way to communicate. I have a picture board available to him with food choices or toy choices that are not readily available. Once he understood that all he had to do was give me a picture to get what he wanted, the majority of his frustration diminished. Are you familiar with this method? Let me know if you would like me to elaborate on anthing else. 

Name: crofty | Date: Nov 16th, 2007 3:51 PM
Hi, we are at the first stage of picture exchange where he will exchange for a desired item, mainly a biscuit, but on the odd occasion a toy. Unfortunately he can't get the next stage of discrimination because he doesn't look at the pictures and has not got enough motivators as yet. Hopefully he will improve in the future as alot of his frustrations are linked to understanding and communicating.
I am also worried about his play as he tend to just push things around abit on the floor at the moment and then get frustrated.
I will have to research the terms you mentioned as i not familiar with them.

Name: jessypink | Date: Nov 19th, 2007 4:42 PM
hello my name is jessica and i allso have 2autistic boys and a son who is adhd and it is hard i no i wish to spek more with you pleas answer me back i whoud like to spek with uther parents who have children with autistim you can e-mail me at [email protected] pleas messeg me thank you 

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