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Old 03-04-2002, 02:08 AM   #31
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How do I thank you for your time and understanding. I sat glued to your posts reading, rereading and admiring you mums who have been there before me! Someone today asked me if I was in a support group for parents of children like Keenan. My response was there is no such support group and I have never met anyone quite like Keenan!
Fortunately my friends are sympathetic to my situation but there are only two (a couple) from church who will look after him. They have a property, adult children and are not busy. Therefore when at their house he can run around, play with someone one to one and there is no pressure on him. I am glad he is my third child as it was obvious that there was something "wrong" from the word go. There were those professionals in the beginning who tried to tell me that his extended tantrums and violence was all part of being one then two, etc. I persisted however and he gets all the help he needs at this stage. He goes to daycare and has a one to one carer but he now knows their routine and only becomes aggressive if another child invades his space (except one child who he will allow in). The other sad thing in our lives is that my youngest died on his first birthday seven and a half months ago. Although Keenan was not (or did not appear to be) affected by this we were constantly questioned. "Do you think Lochie's illness (cardiomyopathy) had anything to do with it"? "Do you think Lochie's death caused it?". I understand that but I am also a competent,capable mother and felt belittled by these comments. It also reminded me of my tragic loss. Nevertheless I just wanted to share that with you.
As for behaviour management - I do reward positive behaviour but it seems to go in one ear and out the other. It's as if he doesn't notice. You praise him for a good thing or for good behaviour or for listening and two seconds later he's attacking his brother or throwing things around. This evening he got into his sister's marbles and as quick as I was picking them up he was finding more to throw. He didn't even notice me frantically telling him to stop throwing them, etc. I walked off as the day was just too much for me. I know this seems a little petty but sometimes the little things really get to me. Anyway - thank you so much for the support. I finally feel able to speak to people who know and care and who don't just pass him off as an undisciplined child.
Donna.

 
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Old 03-04-2002, 04:51 AM   #32
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I am not so sure positive reienforcement worked at all with Jay until after he started the diet- before that he reacted negatively to praise as if strangers were touching his heart without permission and invading his space- eventually even all the social workers and special ed folks came to see consistently that it backfired. It makes perfect sense to me, if a child is sensitive even to noise, touch or sometimes light of coarse they are going to be sensative to unsolicited praise- the who technique is based on the concept that the behaviors are occuring to attain negative attention and they're not! Many of the behaviors are abousultly normal for their "nerological developmental"age. Some of these children also don't have the neurolgical routes to process and learn from the praise. The nerves are like road ways from the brain to the rest of the body and with in the brain connect all the major sections and crossroads so if there are a few bridges out then sometimes you just "can't get there from here" as in with praise. Look at my son, why can he comfortably and quickly organize index card words alphabetically, draw better than me, but be completely unable to write the alphabet or any other words, it still takes him five minutes at age 11 to just write his name! Yet put his on a type writer and zoom he's off and writing and spelling! Obviously there is a gap in the neurological road work that inables his brain to tell his hands how to write the letters. The OT says he can write each letter individually and perfectly when they work on them but soon forgets them and that he can not write the alphabet for her either! Its all in there or his brain wouldn't be able to quickly alphabetize the cards or type so easily. More later -Mary

 
Old 03-04-2002, 06:42 AM   #33
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With Bay, the diet didn't seem to make a difference.
Positive reinforcement and redirection worked best with him.I worked with him when he was two and a half for 60-80 hours a week. All of my time was our time. When I started using the positive reinforcement and edible reinforcers (used only occasionally), he made a lot of progress. I think he knew that I was trying to get into his head and view things as he saw them.He started smiling again. When he was first eval. by the doctors,he was considered very severe.He banged his head 24/7, lost language, etc.. He is seven now.They put him in a resource class with three boys who are non verbal hoping that my son will encourage them to talk.He cannot grasp writing right now. He scribbles,he is not fully potty trained,he can answer yes and no questions, name, address, phone number and has always understood everything you say but could not get it out. He talks in atleast 5 word sentences and will carry a conversation only if you stay on it. We are working on it right now.If I hadn't had the support from people I met online in chat rooms and on message boards,I would have gone crazy. Family members choose not to understand this disorder and choose to act as if it does not exist.

 
Old 03-05-2002, 05:10 AM   #34
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Bays mom, it sounds like you have worked very hard, and made some incredible progress! Its interesting that the diet didn't work. We have a little guy in our class who praise also seems to work and he rocks some and spins but talks very few single words. (does have stu-pid down from an older brother!) Bay sounds very different than Jay I wonder if that is any clue in how well or if the diet will work, Jay has always appeared verbally intact and unless you new him well you wouldn't understand that the hyperactivity, aggression and over-all tazmanian behavior was in place of self-help skills which he had zero verbal skills for! I'm late for work more later Mary

 
Old 03-05-2002, 06:50 AM   #35
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Hi everyone! As I read through all of these posts it is amazing at how similar all of our children are and the experiences we go through. I would have to say one of the worst things I have been through with my son is the way other "adults" have treated me and my son. I have been critisized for my parenting many, many times. To look at my son he "looks" completely typical, but is far from acting like a typical 5 year old. One time when I had my son shopping by myself, I had a women behind me say "it looks like someone is ready for a nap" as my son screamed and tried to claw his way out of the cart. I shrugged it off until the male cashier spoke up and said "I think he needs more dicipline!" How hurtful for someone who has no idea who we are to pass judgement on us. Another store I had an elderly lady jump all over me because my son had his socks, shoes, coat and hat off in the store and I was re-dressing him at the front of the store when I heard her comment "look at that girl over there, she is taking that baby outside and he is completely undressed and it is way to cold, it is a shame that people have children at such a young age!" I have even had a portrait studio person get so frustrated that she hollered at me in front of my husbands whole family because he wouldn't sit still or look at the camera for the family portrait. That is just a few of the things that I have been through so far, but I will admit I have become a much "colder" person because of others ignorance.. Although, it still bothers me when people are rude to us in public because of my sons actions. I have came up with so many "comebacks" to say to people, but I always find myself trying to explain our situation to people.. Because I know if my son had a physical disability people wouldn't dare make rude comments like they do to us now. One tip I have learned that has helped us out is to always call ahead when we have appointments or outings with our son. When I make photo appointments or we have field trips to places, I always call ahead and let them know that my son is Autistic and we might need more time or a bit of a different schedule than others.. It has helped out so much. Now instead of rushing through a photo shoot in 30 minutes we usually get an hour to get him calm and take our time with him.. I'm just curious if other parents get as frustrated as I do with people, or if it is just me over reacting?
Well Take Care Everyone!
Dawn

 
Old 03-05-2002, 07:22 AM   #36
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The only part of the diet that I have tried to keep up is no dairy.It messes his stomach up and causes him to act up more.I have spoken with only a few parents that the diet didn't work for their child. Most parents have and still are doing the GFCF diet with good results.

Bay talked until his regression.When that started, he had to relearn everything. Bay's hyperactivity and aggression towards others usually stems from people not understanding him, wanting more attention good or bad,and just being a boy.

Dawn, the way I handle these people is with an autism card. I ask them if they have ever heard of autism and what it is. They usually say no and I hand them one.
We sometimes end up having a conversation about the disorder. The point of this for me is to hopefully educate these people so that the next time they see a child or adult acting this way, they will think twice before they say hurtful and hateful things to someone else.

I used to have panic attacks and break out into a sweat everytime we went anywhere. It has gotten better and I do not have as many attacks as I once did.

I used to treat others as cold as they treated me. Then I started thinking why they acted that way. The answer I came up with is that they are uneducated on the disability.Why not educate them. I always smile now when they say something really ugly and hand them a card and say this is something I think you need to be educated on! :-)

 
Old 03-05-2002, 07:53 PM   #37
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Wow! you go girl! I don't think I would ever have thought to do that! So where do you get these autism cards?
So its really late and I gotta go to bed but I thought I would share Jay learned "ironic phrases" in school today and man you can imagine its driving him crazy thinking it out and trying to figure out more phrases. I can tell he's "chewing" on it! So far he's got two he picked up from scooby- he can recite word for word almost anything he's ever heard on tv- and "the cat jumped out of its skin" he finds that one particularly amuzing because he loves to startle the cats and recently one of our cats that he startled became allergic to fleas and lost most of her fur (he says skin) before we figured out what was wrong so he's thinking maybe he did scare her out of her skin- before the diet he absolutely hated the way cats 'looked' at him! Now he is trying to make friends with them for the most part. goodnight!-Mary

 
Old 03-05-2002, 08:12 PM   #38
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There were cards you could copy and distribute in an article in the book from the Autism Society. I used to be a member and they sent out a book ever quarter I believe. There are some that appear online. They print out too big. The ones from the autism society are about the size of a credit card as are ones I created. I then get some stuff that is cheaper than laminating called Protect-O-Film from the local book supply and keep some in my purse. I put protect-o-film on them to keep my son from ripping them up.

My son also recites things from t.v. He can sing the Dragon Tales theme as well as the themes from 101 Dalmations, Scooby Do, and a few others.

 
Old 03-06-2002, 01:51 AM   #39
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Just when I wsa feeling like nobody understood I found this room. No sooner had I written my problems and wonderful mums have excellent advice. My Keenan does seem more along Jay's line than Bay's but I am willing to try any new advice as what we do so far isn't working. It's been a week now since the risperdal and we have put up the dosage so here's hoping.
I think the cards are fantastic. I will contact the autism association here in South Australia and see what they have. I have explained it to people on the odd occasion or said he's autistic but when I am so frustrated by there put down attitude I start to fume. I have had a go at a few people who looked down there nose at me. One women said she was concerned by his behaviour but like I said to her," Then why not offer to help me instead of looking like I'm a no good mother with a no good child". At this I went before I said more! Anyway - I appreciate your knowledge and just the fact that you truly understand and don't judge.
Donna.

 
Old 03-06-2002, 04:53 PM   #40
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Hi!My son took Risperdal for more than a year when he was first diagnosed, he started with 1mg and soon went up to 2mg, it helped him a lot, he was able to fall asleep and sleep the night! also hes eye contact improved and he slowed down a bit, he also started to gain weight and was hungry 24/7 and he had a lot of saliva ;At the same time we put him on Depakote for his violent behavior which used to get quite bad when he was frustrated and as you may experience there is a lot of frustration in this kids life;This combination worked great for a long time untill Jimmy started to get shaky hands as a side effect from Risperidal so we switch him to Zyprexa(is very much the same) and later we learned about some cases of Depakote related deths in small children so we switch him to Tegretol which is great for controling behavior and also helps him (and the rest of the family) sleep at night, he keept doing better all the time meking small but steady progress , sayng some loose words, trying really hard to comunicate, following direction, and tamtrums decreased like a miracle;This summer he had a seazure and we got really worried and that could be from the Zyprexa so we took him off ,thinking he was going to regress, but he didnt.As far as OCD we tried paxil, prozac and others but what really works so far is Celexa so right now he is taking it and still taking Tegretol(is good for seazures)and Symmetrel for hyperactivity(this worked like a miracle).I'm happy with his progress and I'm trying really hard not to let those unkind, judgemental and uncompassionet people hurt me at the store, but they have stoped me from going out many times I just hope they never have to walk on our shoes.Good luck to all...Susana

 
Old 03-07-2002, 06:55 AM   #41
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28girl, I have had some terrible experiences with people at public places( specialy old ladies is it the same wiyh you?)waiting for a blood test at the hospital was the worse, this sweet looking grandma came up to me and ask me to "take him away someware else ,this is a very sick child"and I said ,that is why he is at the hospital and ha has the same rights than you to be here.well, the people inside heard the comotion and let me go first,I guess it worked out ok after all.My son also loves to undress no matter where we are, and he loves to try on clothes(specially shirts) even if someone else is wearing them he'll start telling them "shirt off" and trying to take it from them,some of my other son's friends dont mind, but stranger kids and their parents dont take it so well, so I try to go out when Jimmy is in school or when I have respite help.Thinking back when I only had my older son(8yr)and would see a kid tantruming half naked at the mall I might have thougt the mother was doing someting wrong,or not doing someting to help the child behavior; nobody knows (professionals, teachers,family members,friends)what it is like and I don't expect them to do so, hopefully people will become more aware of this desabilities and will apriciate what we do for our kids.

 
Old 03-07-2002, 07:29 AM   #42
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Bay'sMom,I just read about the Autism cards what a great idea! educating America one person at the time.
Do people always take them? Are they thankful? Do they give you an apology?

My son recites and sings too from TV , kids movies and some song from the radio but he still very much non-verbal ,in general he will use from one to three word sentenses if prompted.What I love the most is when he takes a seen from a movie and recites it in a real life similar situation .

 
Old 03-07-2002, 06:21 PM   #43
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Jimmy's Mom, I shove it in their hand. I've never had anyone give it back, although they probably threw it somewhere when I was not looking. I have printed quite a few of them and laminated them. I have probably given out 100 or so since I started doing this three years ago. Only one person ever apologized to me for saying my child needed a good ole fashion spanking. She was an older lady. She really felt bad and I felt bad for her too. Bad that our society can be so cruel and people follow along with what others say instead of making up their own mind and just asking me what is wrong with my child.

 
Old 03-08-2002, 01:46 AM   #44
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Just me again! Has anyone had the need to get an I.Q. test for their child - specifically the Weschler preschool scale or the Vineland assessment? If so would you mind giving me info on their 'score' so I can see if Keenan is indicative of other children with his sorts of issues!
Thanks in advance.
Donna.

 
Old 03-09-2002, 05:23 AM   #45
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Dear Bay's mum - I followed up your tip on autism cards with a friend who has an autistic child and she has some. She will send me one and I will follow it up on the computer. She says it has helped her too! A good thing that came out of today with Keenan is that he acknowledged my dad for the very first time. He was holding a chip and said "Grandpa - I have chip". We were all quite amazed - no more than he. He is used to getting a grunt; no reply; or yelled at. When a friend of his touched keenan's stomach playfully he went off though. He was most upset and stomped inside slamming the door behind him. We were so excited at his effort with his grandpa that it didn't matter.
Just wanted to share our good news. Thanks.
Donna.

 
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