Self-doubt and Adrenaline Crash: We sent our son to residential treatment

JJJ

Active Member
I wouldn't take a diagnosis or a rule out from a school pysch. They just don't have the training. Both of my boys had their testing done outside of the school, both doctors got input from the schools (teacher surveys, inteviews, etc). When I presented the reports at the IEP meetings, the school psychs (two different ones) wanted to reject the findings because "they just didn't see it". With Eeyore, it had been a joint PhD and MD evaluation and the school cannot deny a diagnosis from an MD (they can deny it has educational impact, but they can't overrule an MD.) With Tigger, I knew about the school's 'checklist' for Autism and I suggested we walk through it. I let the classroom staff answer all the questions -- there was a moment of stunned silence on her part when she added up the scores.

Autism isn't just Rainman.
 

AnnieO

Shooting from the Hip
Autism isn't just Rainman.

And that right there says it all. MANY, MANY schools, sped teachers, and even doctors think it has to be extreme, to be on the spectrum at all. This is why the big hullabaloo about eliminating Asperger's from the DSM - the fact is - the spectrum IS. And I read something last night (in a novel; this is fiction, but written by a psychologist) - EVERYONE has some flags; they could be RED, or NEON or CRIMSON red, or just slightly the palest pink... We all have our little quirks. That doesn't put everyone on the spectrum; but from what I've seen in your posts, I'd be wondering too...
 

DammitJanet

Well-Known Member
People do have a skewed view of autism. Did anyone see the guy who auditioned for American Idol? He has made it through the first round of Hollywood week and he has High Functioning Autism. He also sings very well! As a parent who is aware of Autism Spectrum Disorders (ASD), I could spot it right away but most folks probably just thought he was a bit emotional or anxious. He is married and has a baby boy. So obviously all autistic folks arent rocking in the corner unable to communicate...lol.
 

AnnieO

Shooting from the Hip
Onyxx thought that all people with autism counted really well and fast... She knows better, now. I found this out because she wanted to be autistic... This was a LONG time ago... Wow...
 

BrainGoBoom

New Member
I hear you all. We'll be pursuing the neuropsychologist evaluation. To the credit of the school psychiatric--she brought it up in the first place. She seems sharp and on the ball. One of the things that is a challenge with Bug is that he holds himself together at school, so I understand why she would respond as she did. She honestly didn't see it.

At this point, I am not satisfied that any of the diagnosis that have been tossed his way are correct; nor am I satisfied that he is on the correct medications. He seems to be holding himself together at the Residential Treatment Facility (RTF) as well. He has earned his way off of the evaluation hold and is attending the school on campus today. My biggest fear is that he'll work to game the system and not present his symptoms to the staff. We'll be raising these concerns when we meet with his primary therapist next week. Our Bug is a complex kid, and teasing out the correct diagnosis that addresses any physiologic issues as well as emotionally based mal-adaptive behavior is my top priority. I intent to communicate that to the cadre of professionals involved. While I know they tend to operate within their specialty and area of expertise, I have faith that they have the best interest of the patient at heart.

And if they don't, well, I do, and I'm not quiet when it comes to being his advocate.
 

BusynMember

Well-Known Member
Just a warning. Not one school psychologist ever caught the autism in my son. They don't see him like I do either. He may act social WHEN HE IS COMFORTABLE and WITH CERTAIN KIDS, but in a room full of unfamiliar peers he sits in the back of the room with his head down and wants to leave. He can communicate too, but he can't really hold a normal give-and-take conversation where he LISTENS to what others are saying and talks about his feelings (mandatory for real friendship). He is very naive. Everyone is his friend, even those who he barely knows.

A neuropsychologist is best for diagnosing Autism Spectrum Disorders (ASD). Although the kids do get more interactive as they get older, it is also easy and sad to see how different they are from other kids the older they get. My son is smart, but he still likes cartoons and has no interest in rock music or girls or the mall or other things my other kid were crazy about at 17. He does not want to drive, although we did make him take driver's ed. Autism Spectrum Disorders (ASD) kids truly need help. Sure, there are the very marginal Asperger's kids/adults who can deal with life. Many more of them need help just realizing that not bathing is offensive. My son would go forever without taking a bath or cleaning his clothes if we didn't force him to do these things. They are not important to him.

by the way, most Autism Spectrum Disorders (ASD) kids are addicted to videogames/computers. Some parents try to put a limit on it, but I don't. It is part of my son's autism and it calms him because of the sameness. Autism Spectrum Disorders (ASD) kids don't usually have good imaginations so the computer helps him imagine. The kids usually live in a black and white world with no grays or in betweens. This also makes t heir lives hard. Everything is all good or all bad. They don't understand those pesty "boths."
 

Marguerite

Active Member
Even the best psychologist can get it wrong. Your school psychiatric said,
impairments in communication, impairments in social interactions, sensory concerns, and repetitive/stereotypic patterns of behavior and/or interests. I honestly haven't seen evidence of these things.

But you described language delay when he was younger. And the communication impairment in autism is a HISTORY of language delay. My difficult child 3 has caught up with his delay, his language is now in the superior range. But because he had the initial delay, he will always now have word retrieval problems. However, it is very hard to pinpoint NOW. We have a simply marvellous speech pathologist who dug deeper and deeper until she found the problem areas. She said if you look at him superficially, the language problems are now hidden. And in Asperger's, there is no history of language delay.

other angles to autism - social issues. OK, his being bullied and then becoming a bully - it could connect. I'm not saying it does, but it certainly is worth considering and digging deeper. The repetitive/stereotypic behaviour/interests - what about his obsession with girl's swimsuits? That qualifies, it is not necessarily gender dysmorphia. I agree with how you're handling that, by the way. But it is not necessarily what you think it is. it could simply be a fascination for other, not fully identified reasons. For example, difficult child 3 was obsessed with the texture of towelling. His favourite colour is green. And with both, I can tell you exactly how that happened. He cannot. But it was programming, pure and simple, from birth.

Reactive attachment problems - I think it's the label tossed in purely because it's easy, they know he was adopted.

One angle with the autism possibility - it is believed to be connected to high IQ in the family. Temple Grandin says tat people with autism have in large measure, what would produce genius in small measure. Both his birth parents were activists, so chances are they were better educated than most, at least more aware politically because they were more capable academically. And we know that Pol Pot went for the educated people. I suspect the birth mother gave him up because the chances were too high that she, and the baby, would be killed sooner rather than later. It was a very courageous move for her, one designed to give her late husband's child a chance to survive. Perhaps his only chance. Very sad.

On the subject of language delay - the Coxsackie infection caused ear infection which could have impaired his hearing. But you had that checked out to some extent, didn't you? The thing is - people who are trying to think about a child's language development often confuse language with speech.
It is a common mistake.

Examples - two kids. difficult child 3, and our neighbour. difficult child 3 had language delay, but he had speech. He was verbalising, making noises as a baby. But nothing more seemed to develop. Then he began to mimic sounds including words. He loved music, so the first words he uttered were the words of songs on the radio, and he sang them. But there was a sort of "blurring" of the words and any other sounds (such as certain incidental instrumentation) would also be uttered by difficult child 3 as if those sounds were of equal importance. For example the Fugees "Killing Me Softly" - he would sing the first couple of lines then say, "ba ba ba boiwing" for the sitar sound introducing the verse. It is interesting to look back - he had memorised the songs lyrics (plus sounds) as an otherwise random sequence of sounds. Considering the length of some of the songs he sang, this was a remarkable feat of memory given that he had no language at the time. he did not respond even to his own name, it was as if he had no concept of names for people or things, no concept of himself as having a name. If you said to him, "Go to Mummy," he would stare blankly. He did not wave bye bye.
He has caught up, as I said. he is amazing.

Other kid - the neighbour's son. Developed normally. Parents were from Argentina, the boy was learning to speak Spanish and English. At two, however, he fell into the swimming pool and was not breathing for 40 minutes. They brought him back, perhaps should not have. Severely brain-damaged. The doctors said he was a vegetable, he was not responding to them or their instructions at all. But the dad was convinced his son knew him when he walked into the hospital room. Finally the doctors saw it - the boy turned his eyes (mostly rolled back in his head) to his dad when he heard his voice. Dad spoke to him in Spanish, and the boy responded again. A lot of the problem was, the boy was locked in.
Over time, the boy regained a lot of ability but never regained his speech. He was learning to walk again with a special walker. But that was later.
The thing is, all this was happening at the same time as difficult child 3 was really struggling as a toddler. The neighbour boy was 18 months older.
I was asked to babysit the neighbour and his older sister one day for a couple of hours. The mother put on some cartoons for the boy who would watch TV obsessively. The sister was drawing pictures and wanted my attention - not a problem, the little boy's eyes were glued to Sesame Street. Then the TV changed to a different cartoon - one of the Japanese anime ones, where there isn't a lot of movement. He began to whimper, so I left the girl to go sit with him. his eyes went right to my face and he smiled and stopped whimpering - he had someone's attention! I talked to him, he was beginning to understand some English again at this stage, and he was fine - until the TV changed again and another episode of Sesame Street came back on. His eyes went back to the TV. I had been dismissed.
One night soon after his accident, we were at a party at the parent's place. It was 10 pm, the little boy was getting restless and needed to go to bed. he was whining but no words, of course. I sat with him and he kept crying. So I used the only Spanish I knew - I counted his fingers, up to ten. He immediately shut up and paid attention.

At pre-school, tis boy would respond to commands, would "come here" when called (with help from his walker), would sit quietly during story time, was learning to use a computer, could recognise his own name when written (at age 4). over the next ten years (we have since lost contact with them) he continued to improve but had to use a computer to communicate. His language - the stuff he writes for school - all perfectly normal. But no speech. This boy had language, but no speech. difficult child 3 had speech, but no language.

Do you see the difference?

difficult child 3's language delay is possibly more extreme than your son's was. What worked for us, was teaching him to read. Once he could read a word, he learned tat it had a meaning, he learned what the meaning was and he was off and running with the building blocks of language. because he already had speech, it was a shorter step for him. But always - for difficult child 3, the delays were due to his brain's ability to comprehend the concept. By 5 when he started school, he understood the concepts of "Who", "what" and "where" (a bit shaky on "where") but had no idea of "how" or "why".

One thing you are doing that I especially applaud - you and your husband are both posting here. My husband & I do that too (he is "Marg's Man"). he doesn't post often, but he lurks all the time, and we then discuss posts. Not just about our kids, but about other issues too. it has really boosted our communication. We thought we were great communicators before, but tis has raised it to a new level.

Nobody has yet mentioned to you "The Explosive Child" by Ross Greene. It's a very interesting book in a lot of ways. Red it see if it rings a bell for you. Google it, you should find some sample chapters. That book has really helped us a lot with discipline.

if this is autism in any way, then he will have been learning how to behave by imitating role models (including teachers and other kids). They also are the ultimate egalitarians - adults expect a certain level of respect from a child, but do not show that same respect to the child. An autistic child does not have the subtle social capability to get this, and will treat adults the same way those adults treat him. Thus we had the scene with easy child 2/difficult child 2 - I gave her a glass of water when she had been demanding a third glass of juice. She stood there at age 3, hands on hips, and shouted at me. "I said I wanted JUICE! Why don't you ever listen?"
She was reflecting back to me, the way I had spoken to her once before.

To deal with this, you cannot discipline it out of them because that sort of discipline (punishment) is seen as you exerting control. They will ten try the same control tactics back on you - it snowballs out of control. So instead, you have to be the hero and begin to teach respect by showing respect, even as the child continues to be disrespectful. You then make it clear you are modelling - "I am not disrespecting you; please show respect to me. Here is how you should do it..."

Welcome to both of you. it is tough. Hang in there, you are doing everything you can. Stay in touch, keep us posted on progress,

Marg
 

BrainGoBoom

New Member
Wow, Marg, thank you so much for such a thoughtful post. I very much appreciate it.

We have read and used the CPS techniques discussed in The Explosive Child. Bug's primary therapist pre-Residential Treatment Center (RTC) is an expert in this field.
 
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