TV interview with difficult child 3

[Marguerite]

The interview screened tonight.

It was a 60 Minutes type of program, the story was about autism and the lack of government funding in Australia. They dealt with autism at a number of levels, there were about three or four kids in the story and difficult child 3 was "Exhibit A" for high-functioning autistics. He was the one talking to the interviewer about what it's like being autistic.

They were at our house for five hours, but we're only on screen for about two minutes, most of that difficult child 3. They focussed mostly on the bullying and especially the last bad attack. I wasn't happy with their editing - they made it look like I was accusing these kids of continung to harrass difficult child 3 when in fact when I said "ahd they got away with it" I was talking about how the bullies back in Primary school couldn't be identified by difficult child 3 and so they kept donig it and kept getting away with it.
It's a shame, because what I was talking about was his face blindness, which is highly relevant to the experimental treatment that the story was also about.

After the story aired, the phone began to ring. husband has got dinner tonight because I've been tied up on the phone. An autistic kid from difficult child 3's drama class rang to say, "I was bullied too. Tell difficult child 3 I'm proud of him and honoured to be his friend."

My good friend, also speech pathologist, sent me a text message and also left a phone message to say, "I hadn't realised how bad it is but at the risk of offending you, I would like to work with difficult child 3 on his speech dysfluency as a matter of urgency."
I rang her back and said, "Yes please." I've been increasingly concerned about difficult child 3's speech getting worse - on a number of fronts.

My sister rang, said how sad she was to live so far away where she's too distant to be a personal support. I pointed out that we have a lot of local support, but even the best local support wouldn't have prevented the attacks.

The episode is available online, I'll give you the link. I know it gives our real names but it's OK - I don't mind people here knowing, I just don't use our real names here because I don't ant someone to Google us and track us TO this site. FROM this site is far less an issue, I trust you all here and consider you friends. However, I still prefer to use my pseudonym here on this site, I spend so much time here that I literally do answer to my nickname in person.

http://au.tv.yahoo.com/sunday-night/

Click on the link to "autism solution" to watch the story. difficult child 3 is the boy with glasses (looks like Harry Potter). I'm in there with a couple of lines only, but if you want to hear what I sound like (Aussie acccen tand all) now's your chance!

Let me know what you think about the story.

Marg

 

[BusynMember]

Marg, GOOD FOR YOU AND difficult child 3 for spreading the word!!!!!

I think television often slants things in ways that make us cringe, but by the response, you hit the nail on the head and got the right message to a lot of people.

Kudos!

 

[maril]

Thanks for providing the link. Your son's story and that of the others gave me insight. Becoming aware of the struggles these children and their families face brought tears to my eyes. I hope your son and the other children benefit and continue to progress with treatment.

I was stunned about the bullying and am saddened that your son would be targeted and treated in such a way. How horrible.

Lovely countryside! So scenic, as I have imagined when you have described the beach in your posts.

You are a wonderful mom and have an endearing and bright son.

 

[Mattsmom277]

I haven't the time right this second to watch the interview, but plan to later in the day when I have a bit of spare time.

I wanted to say good for you and your family and definitly your difficult child! Putting a face to the term "autistic" is something to be proud of and thanked for. So many have no concept of what it means, for the autistic person nor their family. The effects are wide ranging and I think its terrific that you were able to share that with viewers.

I'm glad to hear that you got such a positive response from loved ones, friends etc. Also great about the speech offer. That is a fantastic offer considering you had creeping concerns.

I look forward to viewing the interview!

 

[LittleDudesMom]

Marg,

I just watched the whole thing. It was a wonderful story - it showed the struggles that both the autistic child and their family has to go through in your country, as well as some of the new treatments that are being used.

I actually got a lurch in my heart when I saw Robbie's injuries from bullying. What a handsome and intellegent son you have!

Bringing the struggles and the hope to more folks is aways a good thing!

Sharon

 

[Rabbit]

Thanks for sharing!!! It was a wonderful thing that u shared your story and brought attention to Autism! Hugs Rabbit

 

[everywoman]

Thank you Marge for sharing. As a public school teacher, I am fortunate enough to be able to periodically have students on the spectrum in my reg. ed English class. I also have done home bound instruction for an autistic student at my school. I have one student right now who is a senior and will be graduating this spring. He recently gave a speech to the class about his early struggles. Fortunately the students in my class are warm, caring, and supportive of him.

 

[ML]

I think it's really good. It broke my heart to see R's injuries from bullying I'm learning how truly different and unique our Autism Spectrum Disorders (ASD) kids are. Manster is not face blind, in fact his issue is that he perceives emotions as being more intense. He'll see a frown as someone is unhappy with him. Also, he doesn't have the self confidence R has. He could never do an interview like that. On the other hand he has lots of friends, mostly girls. R is so smart and handsome, Marg. You've done an amazing job and he is so well adjusted.

I thought you did great. Also you are very pretty.

ML

 

[susiestar]

What an excellent job you and difficult child 3 did! You have really put a face onto autism and the problems our kids face. I know difficult child 3 was only on for part of the episode, but the impact of his part id amazing. He truly let people SEE the result of bullying with the photos of his injuries.

Often we hear of an autistic child who is bullied, but rarely do we actually SEE the injuries, the physical side of the injuries and the people who suffer through them. difficult child 3 has changed that - and what an amazing job he did!!! I truly hope that people continue to think and worry about autism, and that they start to do more, much more to truly help the autistic children in their world.

Heck, even if they would pop in with a casserole now and again it would help by giving you that much more time to work on other things. The friend who wants to work more on difficult child 3's speech is so generous, I hope that she does not lose focus before results are seen.

Thank you, and especially difficult child 3. You have helped MILLIONS of people understand autistic spectrum disorders. Hopefully the oxytocin trial will have great results with few side effects and can unlocked more of his worlds.

Many hugs to you and the entire family. You have done us ALL a wonderful service by opening up your lives.

 

[1 Day At a Time]

Marg,

I want to add my thanks as well. The power of television cannot be underestimated. Your efforts are very much appreciated. Please let us know how the oxytocin trial goes!

Valerie

 

[Estherfromjerusalem]

Marg, that was truly moving. I had tears in my eyes by the end. It was of course great to see you and your son, and to hear your voice -- my goodness, that is fantastic to be able to put a real face and voice to someone on this board.

Since I have a grandchild with Pervasive Developmental Disorder (PDD)-not otherwise specified which is on the autistic spectrum, it is a subject that interests me and fascinates me. Luckily his mother is a special education teacher so she taught my son, and they were as parents able to give him everything he needed and also to take him to the therapists that he needed (and were provided here by the authorities). He is a very good student in school, but socially he has problems, but they work at it and he is doing fine. These days when he comes to visit, he even gives me (his grandma) a kiss if I ask for one. Now -- that IS PROGRESS.

By the way, I read recently in the newspaper that here in Israel the "early intervention" method is very advanced and that people come here with children from all over Europe to live here and have their children treated here.

I wonder what it is that causes such a high incidence of autism these days. Was there always such a high incidence? Or maybe people hid autistic children in "the old days"? I wonder . . .

I think in England when I was growing up, there were people and kids whom we would call "eccentric," and with hindsight maybe they had Aspergers or something like that. They were certainly different, but in England of 50 and 60 years ago there was a tolerance of people who were "eccentric." Oh well, I'm just thinking out loud.

Thanks for sharing that with me. Your son is lovely. You are very pretty, and eloquent (as you are in your writing too).

Love, Esther

 

[navineja]

Just watched the piece and thought that it was really well done. The statistic regarding the amount of money spent on insulating homes vs the amount on helping "our" kids was astonishing, as well as the wonderful services offered in England.
Marg and difficult child 3- great job! Putting yourselves out there like that is never easy, but if it serves to improve the system even a little,... I don't see how anyone with the ability or power could not do something to give more to these kids, especially after seeing the pics of difficult child 3's injuries.
Also, cool to put faces and voices to the names!

 

[Marguerite]

THanks, everyone.

I do believe the higher incidence these days is a higher rate of recognition and broader scope of diagnosis. I look back through family through the generations and can see people who if born these days, would almost certainly get an autism diagnosis of some sort, but who were merely considered eccentric. husband's father was literally born and raised on a sheep station outback. It's a lot easier to be a bit different when you can more easily control and know what your day will hold. He was home-schooled because there was no school within coo-ee of the station. All the boys were home-schooled but husband's dad was the son who was most willing to pitch in and help on the farm, even if it meant leaving his lessons. He was a genius when it came to problem solving and fixing things in very ingenious ways. Later in WWII this same knack was valued by his fellow soldiers and after he was a POW, he helped make things and fix things with ingenuity in the camps. This has been reported on independently.

I have a cousin, now dead, who I believe was Aspie. I have no way of knowing if he had any language delay, the only people who could tell me have now died. His sisters are younger, by the time they were born he was about six years old and his mother, a speech pathologist, would have worked intensively to resolve any language delay. He was a musical genius who for a time in the 50s and 60s was world-renowned for his composition and performance. Then he went even stranger (he always was a bit odd) and became a recluse.

difficult child 3 has cousins who themselves and/or their children, have similar Pervasive Developmental Disorder (PDD)-ish (but currently undiagnosed) problems. Some live in semi-isolation on farms, so for practical purposes, the parents can miniimise the impact of the problems on thier lives. But they need to do something because eventually the child has to mix, unless they can home-school.

My phone began to ring (someone form school, from the phone number) at 7 am. I missed the call and haven't been able to get a connection back. I tihnk it's difficult child 3's SPED.

As for me being good looking - I'm not the blonde. I'm the menopausal brunette with no make-up (except for the brief glimpse in the hospital, when I had on the wrong shade of lipstick). I hadn't realised just how middle-aged I look from that angle. My accent is broader than it used to be - I used to sound much more English. The blonde woman sounds more "ocker" than I do. The Aussie standard (what there is of one) is now much broader than it used to be, Aussie broadcasters and reporters are acceptable with broad accents these days. Back in the 60s when I was getting my own speech training, all efforts were being put in to panelbeat our flattened vowels back into fully rounded English tones. Then it became a bit too obvious and the "tall poppy" syndrome that levels off any attempt to sound "better" than anyone else saw me hurriedly "ockering up" again.

I rarely drink alcohol these days but it is a family joke that the more I drink, the more precise my speech becomes. I was leaving a party in the wee small hours a few decades ago when someone (very inebriated) turned to me (I wasn't, but I had been drinking plus I was tired) and he said to me, "You must be drunk, you're talking posh!"

difficult child 3 is still a little pleased with himself and a bit surprised at the response we had last night. That photo of his injuries really was spectacular, the photos were taken by the ambulance officer who arrived within minutes of my call. That incident was two years ago. I'm a little anxious as to how those families will react. I did carry a copy of that photo with me in case one of the parents asked me how difficult child 3 was, after that incident. But te only parent who spoke to me wouldn't look at the photo, didn't want to know (because her son was only involved in verbal stuff, not trowing stuff). I did have a photo of the log they threw at difficult child 3 to show the news crew, it really was a nasty bit of wood with sharp pointy bits sticking out. That kind of tree is notorious for being very hard wood and also being very spiky. Few craftsmen will work with it but we have a local sculptor who deliberately works with "rubbish" wood because he uses the bad bits as a feature. His most recent piece that I've seen was with a piece of wood very similar to that damaging log - the guy left all the spiky bits on it and turned the piece into a crocodile head! A gnarled, distorted croc head which he called "old salty".

It will open up (like the crab scupture above). The little spikes have been smoothed down in this piece. The real thing is worse! The log thrown at difficult child 3 was also not rounded, it was long and spiky. And heavy. I'm amazed the kid could throw it.

And as I said to the reporter, to their credit the kids did stop when they saw what they had done. And they've not done it since (apart from that youngest one whose mother wouldn't look at the photo - that kid still hurls abuse at difficult child 3 when he sees him).

School hours are about to start here. I've got to hit the ground running, because it's also business hours and I need to possibly go out and see easy child 2/difficult child 2.

I'll check in today as and when I can.

Marg

 

[Estherfromjerusalem]

Marg -- I knew which one was you -- after all, you have posted photos of yourself at your children's weddings, and I still think you are pretty, so there!

Love, Esther

 

[mstang67chic]

Marg, you and difficult child 3/R did a wonderful job! Give that boy our congratulations!!! Even with the speech issues he did a brilliant job of describing Autism and what it's like.

After hearing about your dealings with the lack of support for Autism in Oz, I got a kick out of the reporter's statement about it being laughable. Maybe this attention will shame your government into actually doing something.

I too loved your beach....makes me want to go there NOW! And, by the way...when/if I ever do get to Oz....I don't know if I'll be able to call you H. I'll probably still call you Marg! LOL

Again.....fantastic job to the both of you! I hope this gets things happening.

 

[Wiped Out]

Marg,
difficult child 3 did a great job of sharing his experiences. He was amazing and so were you. I'm very proud of you both! Hugs to you both.

 

[SearchingForRainbows]

Marg,

Thank you so much for sharing this story with us. Your son is so handsome! I think he did an absolutely wonderful job of explaining what it is like to walk in his shoes. It made me so sad and angry to see how horribly your son was bullied... I think that picture of him after the attack, does much more than words can ever do, to drive the point home that bullying is something that MUST be taken very seriously!!! I'm so proud of you and your son for educating the public on this topic!!!

We're fortunate in the United States because early intervention is readily accessible from birth through the child's third year, provided the child's parents, pediatrician, etc., recognize there is a need for it. (Our first pediatrician thought I was crazy for thinking there was anything wrong with difficult child 2. I sent him a lengthy letter explaining why my children would no longer be his patients.) Once a child "graduates" out of early intervention, the problems begin... Services become much more difficult to access and from my experiences, it is left up to the parents to advocate for their children - In our case, it became a "full-time job!!!"

I'm very interested in the experimental treatment your son is receiving. I never heard of it before you shared this program with us. Please keep us updated. It has the potential to help so many kids...

Your part of the world is beautiful!!! My husband and I have always wanted to visit Australia.

Thanks again for sharing this program with all of us. SFR

 

[timer lady]

Marg, what a wonderful piece. Your difficult child 3 is one handsome young man & if you will give him a hug from this cyber auntie for being strong & brave for doing this piece ~ putting himself out there. Those wounds looked horrendous - brought tears to my eyes.

You looked lovely - don't care what you say.

Fingers crossed this new treatment is effective for your difficult child 3.

 

[Marguerite]

The treatment trial difficult child 3 is on, is oxytocin. I've mentioned it here before but on a different thread. He's actually been on a preliminary study where he was given the oxytocin as a single dose only, then at a later date was given a placebo. At the time we didn't know which was which.

The way the research was done with that pilot study - we had to go in to see them at Sydney Uni, difficult child 3 not allowed to eat or drink for two hours prior. They gave him the oxytocin in saline in a nasal spray (this is how a number of hormones are given, such as vasopressin). After that we had to wait an hour or so, we used that time to get some food for him (finally allowed to eat). The reason for not eating was to avoid possible nausea problems from the preservative in the nasal spray. But he's clearly OK.
Then we went back an hour after the nasal spray for a series of computer tests. These tests are mostly tests of facial recognition as well as problem-solving. There is a bar at the bottom of the computer screen which watches where the kid is actually looking, it tracks the eye movements. The eye movements plus the actual results are all noted.

The whole process was done twice - once for the oxytocin, once for the placebo. Double-blinded, so the researchers don't know which spray was which and neiter do the subject.

Once the pilot study was completed, we were told which one had been the "real stuff" and which the dummy. We were asked if we'd observed any other changes over the time and had to fill in a report on how he's been behaving and any other issues, over the previous month. Then fill it in again over the n ext few months, another lot of forms each month. All the data gets compiled and all the results form all subjects are put together to see if they can begin to find a pattern that indicates benefit.

The theory behind this - you may recall that when a baby is breast-fed, it is oxytocin that is secreted by the mother's pituitary, that makes the milk "let down". Similarly, oxytocin is secreted in the mother's bloodstream to help the uterus contract during labour and also continue to contract after birth.

A hormone like this will pass into the baby through the mother's bloodstream before birth and through breast milk after birth. They now think that this hormone also plays a part in babies and mothers bonding immediately after birth. They think it could even play a role in face recognition and learning.
In which case - as a possible treatment for autism, this would be natural, it would aid learning, aid face recognition and hopefully also aid social skills. I tihnk it also would have an extended benefit in ADHD and any other condition where inattention or distractibility causes problems.

The current study difficult child 3 is at the end of, has been a 2 month daily treatment. He had to have the nasal spray at home twice a day for two months. It has to be kept in the fridge. We had it organised fairly well, got intoa good routine. They didn't do the double-blinded tihng with each subject - we haven't done two separate trials, only one. We suspect he had placebo, we noticed no change. That was something frustrating with the reporter - he kept asking, "And did you notice any difference?" and we had to say "Not this time, we think difficult child 3 just had saline," and the reporter asked again, "What about when he did the second part, with the hormone?" andwe had to say, "they're not doing it that way - they are trying to do it by having more subjects, not spreading it over too long a time. This way each subject is finished with the nasal spray after 2 months, instead of about 5 (giving a month off in between)."
The reporter just didn't seem to get it. Probably why they didn't use any of that footage.

You're all very kind saying I looked lovely. I guess we're not used to how we look from angles other than the ones we see in the mirror. I also was wearing absolutely no make-up, I realsied after they arrived tat I had missed my chance to pretty up a bit. I'd intended to at least put on a little eyeshadow and contouring, so I looked less - old. But I AM old, I have to remember that. Not difficult sometimes, when my body feels old.

But I'm not wearing those jeans again, except for painting! They make me look fat and dumpy, they're too short and too baggy. Besides, I have to wear a belt with them to stop them falling off, so I guess new jeans are on the cards.

Hmmm, op shop is open this morning...

difficult child 3 has spent much of his life being told he looks like Harry Potter. But I noticed yesterday, he's looking more and more like that guy from Twilight. I told him, he was offended. "You're saying I look like a vampire?"
"Not just ANY vampire, kiddo. A very good looking one."
"But still a vampire," he insisted.
I said that the actor doesn't look like a vampire, except for the white makeup. And difficult child 3 looks like a tanned, healthy version.

Or maybe it's just me...

Marg

 

[idohope]

I echo the others in saying thank you and difficult child 3 for doing this and you for sharing it with us.