What’s the Goal of it All?

Charlie walking around his new school early Thursday morning Cognitive Dysfunction Reversed in Mouse Model of Down Syndrome was the headline for a new study by researchers from the Stanford University School of Medicine and Lucile Packard Children's Hospital, as reported in yesterday's Science Daily. The actual Science Translational Medicine study is about how giving norepinephrine, a neurotransmitter the helps cells communicate, to mice with brains "genetically engineered to mimic Down syndrome" improves some of their cognitive functioning. Specifically (and noting I do not know much about Down syndrome):

 

…..people with Down syndrome struggle to use spatial and contextual information to form new memories, a function that depends on the hippocampus part of the brain. As a result, they have trouble with learning to navigate complex environments such as a new neighborhood or a shopping mall. But they're much better at remembering information linked to colors, sounds or other sensory cues because such sensory memories are coordinated by a different brain structure, the amygdala.


Salehi and his colleagues looked at what could be causing the problems in the hippocampus. Normally, as contextual or relational memories are formed, hippocampal neurons receive norepinephrine from neurons in another part of the brain, the locus coeruleus. The researchers showed that, like humans with Down syndrome, the mice in their experiments experienced early degeneration of the locus coeruleus.


When the locus coeruleus broke down in the study's mice, the animals failed at simple cognitive tests that required them to be aware of changes in the milieu: For instance, the genetically engineered mice, when placed in the strange environment of an unknown cage, did not build nests. That contrasts with normal mice, which typically build nests in such circumstances.


However, by giving norepinephrine precursors to the mice with the Down-syndrome-like condition, the researchers could fix the problem. Only a few hours after they got the drugs, which were converted to norepinephrine in the brain, these mice were just as good at nest-building and related cognitive tests as normal mice. Direct examination of neurons in the hippocampus of the genetically altered mice showed that these cells responded well to norepinephrine.


Norepinephrine improved—helped—the cognitive ability of the mice, an improvement that was also noted at the cellular level. The "reversing deficits" headline is not exactly misleading, but a bit of a hasty over-generalization familiar to anyone who follows reporting about "the latest" in research, science, and anything biomedical about autism.


Having rather often weighed in on the problems of referring to autism as "reversible," I'm not inclined to turn this post, let alone this blog, into a space for discussions of the cans and can't-do-its of various "interventions" and "treatments" and understandings of autism. We certainly tried a number of such biomedical "treatments" for Charlie when he was much younger. Charlie gluten-free and casein-free (and supplement-filled) for some years and the mark of his being the former can be seen in his disinclination to eat many of the foods in the
BAC cafeteria: Cereal and milk. French toast sticks. Mashed potatoes (with the off-limits butter!).


When I picked Charlie up, his teacher noted to me that he asked for corn and liked that, and that he's been asking for an apple, and wanting it to be sliced (as I do with his apples at home, only it's been a while since Charlie wanted to eat an apple at home). Thursday, "day 4," was–she noted—an "awesome" day. Around
11.30am, the classroom staff didn't place any new demands on Charlie. He's been requesting breaks and walks frequently after working at his desk; his teacher noted that she thinks this is a sign of his "awareness" that he can request such breaks when the room gets too loud or Charlie himself is frustrated.


I felt an internal "wow" on reading that in his notebook. Charlie was 7 when a speech therapist and his teacher first tried to teach him to ask for a "break" to leave the room when, well, it got too noisy and he got frustrated. He might ask for such a "break" once or twice successfully, but never consistently. We'd note that he would often ask when he was already so agitated that, even when outside the room, he was already very, very upset. Over time, the very word "break" started to acquire negative connotations for Charlie.


And it seems that, five years later, Charlie's learned to ask for that "break." And because the BAC is, well, big, there's always space for him to walk around in. There is a gym with a basketball court and, on the top level, a track. You can get a pretty good, short walk just by walking around the BAC grounds too, as Charlie and I did before school started; we've been leaving early and arriving up to 30 minutes before school starts—Charlie's been eager to get out and go, though he still had an initial
frisson of hesitance getting out of the car.


As I was signing him out in the main office yesterday afternoon, I overheard a man asking about the BAC and if it was public. He noted that he had visited a certain private autism school (I had too). He asked a few more questions in an intense tone of voice, and with a similarly intense set to his jaw and shoulders.


Yeah, I think I know what he was feeling, that the best school for his child has to be found and his child has to have a place now and immediately, to give her or him the best chance possible for…..
recovery?


The good life? 

A place to feel a bit more……at home—or just a place to get a new start?

Advertisements
Comments
17 Responses to “What’s the Goal of it All?”
  1. VAB says:

    I’m so glad that Charlie is feeling comfortable so quickly. It’s quite amazing.

  2. beautyobscure says:

    Love that he is able to ask for breaks. Love even more that staff are honouring his requests. I remember in highschool how differently I felt in the classes where I knew I could take a break and the classes where teachers denied my requests.

  3. Regina says:

    “Awesome” from school?
    Super…even though it’s early days, this already sounds like a leap up from last year. Crossing my fingers and sending good wishes that this continues on the upswing and that Charlie feels like he is in a place and with folks that work for/with him (and that you feel works for/with your family).
    Warm regards.

  4. Being able to ask for a break is a huge milestone not only for the verbal expression of his needs, but also because he is taking care of himself! Wonderful.

  5. Bonnie says:

    …a place to be set up for success? Sounds like that’s what they’re doing so far! So happy it’s working out Kristina, I think your “tight team of three” deserves great things to happen after what you’ve all been through. Looking forward to more great news!

  6. Jen says:

    Hope things continue to be awesome!

  7. Judy T says:

    This is sounding SO promising! Charlie must be feeling so safe at the new school – being able to ask for new foods, for foods to be cut up for him (i.e. “prepared” the way he likes it), take breaks – all of these things require a level of trust that it didn’t sound like he’s had the past year and some. And being “safe” in the whole of school is so much better than having only a tiny little corner … I’m very happy for all of you, and hope it continues!

  8. farmwifetwo says:

    Glad he’s doing well. If he continues to do so hopefully before too much longer you can get rid of the helmet.
    I admit I fall in the “wish for a cure” crowd. Except I am not a “let’s transplant brains” crowd, contrary to the Hubites/ASAN. I simply wish that through speech, OT and education my youngest son can become as independant as the elder will be.
    I don’t believe – contrary to the Hubites/ASAN that claim it’s his birthright – that it’s OK for someone to live without a job, car, friends, family, children…. Currently with a smidge 0.25ml/2x’s daily of Risperdal the fuzzies seem to have vanished and I have hopes that his increase in awareness and speech continue and the brain starts to rewire itself like it did with his elder bro. I don’t anticipate full independance unfortunately… but that won’t stop me from teaching him.
    Why people think it’s “ok” for someone to be at the mercy of the system, to be institutions – I don’t care if they are houses or not… it’s still a dumping ground for those that can’t no matter how hard you try to pretty it up… or how much the workers care – why is it OK to marginalize people that way just so those without that level of difficulty with the same diagnosis can ignore them and only lobby for those things that affect them personally. Everyone is entitled to “the American Dream” and should be. To claim disabilities a glorious and these people should be proud to live like this… is cruel.

  9. Evan Tasch says:

    So happy that things are going well for Charlie!!!!! I get a peaceful, easy feeling when I hear of such good things happening for you guys!

  10. Club 166 says:

    Looks like thing are going well. Go with the flow…
    Joe

  11. Moi says:

    I hope these are all good signs of peaceful easy school!
    Bug asks to go to the bathroom when he wants a break. It works, he doesn’t feel like it’s something he’s asking for that is “different”, so we go with it.

  12. Leila says:

    You must be so happy and relieved that the transition to the new Center went so well. It’s so exciting that he’s using his words and communicating his needs to the new teachers… The staff there also seems to communicate better with the parents.
    In regards to the study, it’s very promising… But will it work for intellectual disabilities in general or just for a specific area of intelligence? We shall see.

  13. Louise says:

    Christina, this is such a happy and hopeful day you have described. It sounds like Charlie is old enough, and internally ware enough, to learn how to comfort himself. The walks certainly sound like a “stay calm” coping mechanism.
    But more than that, he respects the people he’s with so much that he is communicating his intention and needs to them. This is a major step forward in social awareness. Without social cognizance, he would just jump up and walk away. But he is trying hard to NOT be disruptive.
    It sounds like he really is beginning to enjoy his teachers, his activities, and the physical environment. What will you do if he falls in love with it?
    You may have to stay put for a while – at least until he’s 21. If he begins to bloom and make rapid progress, his options will increase dramatically. So much has changed for Team Charlie in just this one week.
    A frequent them in your writing is about moving, looking for home. You “go with him”, rather than “stand by him.” What happens when that searching movement essentially ends for a decade or so? New challenges for everybody.
    One of my adult mottoes is “Bloom where you’re planted.” Putting down roots in a transplanted spot … freeing or constricting?

  14. Jill says:

    Do you suppose Charlie started to dislike the word “break” because it seemed like “broken”- a word that you say made him anxious?
    English is a difficult and confusing language for foreign speakers and for children whose brains are wired in such a way that they don’t soak it up with ease. There are many double meanings and figures of speech that must seem daunting to a boy of few words like Charlie.
    If one is a concrete thinker it must be even more confusing. My older brother-in-law once told me how he was very confused as a child by the TV commercials for Castro convertibles that seemed to glorify Fidel Castro, whom everyone thought of as a menace. He didn’t understand as four or five that there could be many different Castros, some of whom sold sofa beds and some of whom had brought communism to the Western hemisphere.

  15. autismvox says:

    @Jill, I had not thought of that—I’m not so sure how Charlie associates those words; conjugating verbs not having been a strong point for him……. I don’t think “break” and “broken” have actually been used in the same contexts with/for him.
    @Louise, “no geographical cure,” as Jim and I frequently remind each other!

  16. autismvox says:

    I do think the bigger physical space has been important for Charlie. But it’s also the teaching and, what can one say, the atmosphere in the classrooms and among the teaching staff—-this is still an ABA/behavioral school, but not behavioral teaching methods applied in the quite rigid way they were in his old program.

  17. Niksmom says:

    There is much here which warms my heart. 🙂

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

What’s the Goal of it All?

Charlie walking around his new school early Thursday morning Cognitive Dysfunction Reversed in Mouse Model of Down Syndrome was the headline for a new study by researchers from the Stanford University School of Medicine and Lucile Packard Children's Hospital, as reported in yesterday's Science Daily. The actual Science Translational Medicine study is about how giving norepinephrine, a neurotransmitter the helps cells communicate, to mice with brains "genetically engineered to mimic Down syndrome" improves some of their cognitive functioning. Specifically (and noting I do not know much about Down syndrome):

 

…..people with Down syndrome struggle to use spatial and contextual information to form new memories, a function that depends on the hippocampus part of the brain. As a result, they have trouble with learning to navigate complex environments such as a new neighborhood or a shopping mall. But they're much better at remembering information linked to colors, sounds or other sensory cues because such sensory memories are coordinated by a different brain structure, the amygdala.


Salehi and his colleagues looked at what could be causing the problems in the hippocampus. Normally, as contextual or relational memories are formed, hippocampal neurons receive norepinephrine from neurons in another part of the brain, the locus coeruleus. The researchers showed that, like humans with Down syndrome, the mice in their experiments experienced early degeneration of the locus coeruleus.


When the locus coeruleus broke down in the study's mice, the animals failed at simple cognitive tests that required them to be aware of changes in the milieu: For instance, the genetically engineered mice, when placed in the strange environment of an unknown cage, did not build nests. That contrasts with normal mice, which typically build nests in such circumstances.


However, by giving norepinephrine precursors to the mice with the Down-syndrome-like condition, the researchers could fix the problem. Only a few hours after they got the drugs, which were converted to norepinephrine in the brain, these mice were just as good at nest-building and related cognitive tests as normal mice. Direct examination of neurons in the hippocampus of the genetically altered mice showed that these cells responded well to norepinephrine.


Norepinephrine improved—helped—the cognitive ability of the mice, an improvement that was also noted at the cellular level. The "reversing deficits" headline is not exactly misleading, but a bit of a hasty over-generalization familiar to anyone who follows reporting about "the latest" in research, science, and anything biomedical about autism.


Having rather often weighed in on the problems of referring to autism as "reversible," I'm not inclined to turn this post, let alone this blog, into a space for discussions of the cans and can't-do-its of various "interventions" and "treatments" and understandings of autism. We certainly tried a number of such biomedical "treatments" for Charlie when he was much younger. Charlie gluten-free and casein-free (and supplement-filled) for some years and the mark of his being the former can be seen in his disinclination to eat many of the foods in the
BAC cafeteria: Cereal and milk. French toast sticks. Mashed potatoes (with the off-limits butter!).


When I picked Charlie up, his teacher noted to me that he asked for corn and liked that, and that he's been asking for an apple, and wanting it to be sliced (as I do with his apples at home, only it's been a while since Charlie wanted to eat an apple at home). Thursday, "day 4," was–she noted—an "awesome" day. Around
11.30am, the classroom staff didn't place any new demands on Charlie. He's been requesting breaks and walks frequently after working at his desk; his teacher noted that she thinks this is a sign of his "awareness" that he can request such breaks when the room gets too loud or Charlie himself is frustrated.


I felt an internal "wow" on reading that in his notebook. Charlie was 7 when a speech therapist and his teacher first tried to teach him to ask for a "break" to leave the room when, well, it got too noisy and he got frustrated. He might ask for such a "break" once or twice successfully, but never consistently. We'd note that he would often ask when he was already so agitated that, even when outside the room, he was already very, very upset. Over time, the very word "break" started to acquire negative connotations for Charlie.


And it seems that, five years later, Charlie's learned to ask for that "break." And because the BAC is, well, big, there's always space for him to walk around in. There is a gym with a basketball court and, on the top level, a track. You can get a pretty good, short walk just by walking around the BAC grounds too, as Charlie and I did before school started; we've been leaving early and arriving up to 30 minutes before school starts—Charlie's been eager to get out and go, though he still had an initial
frisson of hesitance getting out of the car.


As I was signing him out in the main office yesterday afternoon, I overheard a man asking about the BAC and if it was public. He noted that he had visited a certain private autism school (I had too). He asked a few more questions in an intense tone of voice, and with a similarly intense set to his jaw and shoulders.


Yeah, I think I know what he was feeling, that the best school for his child has to be found and his child has to have a place now and immediately, to give her or him the best chance possible for…..
recovery?


The good life? 

A place to feel a bit more……at home—or just a place to get a new start?

Comments
12 Responses to “What’s the Goal of it All?”
  1. Dwight F says:

    Maybe just simply a better place?
    Which it seems to be shaping up as what Charlie has found.

  2. Regina says:

    “Awesome” from school?
    Super…even though it’s early days, this already sounds like a leap up from last year. Crossing my fingers and sending good wishes that this continues on the upswing and that Charlie feels like he is in a place and with folks that work for/with him (and that you feel works for/with your family).
    Warm regards.

  3. storkdok says:

    It’s so great to hear Charlie has learned to ask for breaks! Good on him! Sometimes my son is denied breaks when he asks, upon which he “shatters” (glassman, anyone?). I keep telling them that if he actually says he needs a break, he has made a huge effort in first identifying the feeling, then processing the options (shatter or ask for break?) and then finding the words and getting them out, his request should be honored.

  4. Jen says:

    Hope things continue to be awesome!

  5. Linda says:

    His picture tell it all. What a cutie.

  6. Evan Tasch says:

    So happy that things are going well for Charlie!!!!! I get a peaceful, easy feeling when I hear of such good things happening for you guys!

  7. Dwight F says:

    > Currently with a smidge 0.25ml/2x’s daily of Risperdal the fuzzies seem to have vanished and I have hopes that his increase in awareness and speech continue
    It’s good to hear the medication is working for him. It is scary territory giving our little ones psychoactive meds. I’m not sure whether taking Straterra myself made it easier or harder to choose to try that with G, although I know it avoided some of the drawbacks I experienced when initially finding he correct dose. Optimal dose for him at about 50% normal dosage/weight, same as me. Being over optimal dose is NOT a pleasant experience.
    > and the brain starts to rewire itself like it did with his elder bro
    I think the common word for that is “learning”. 😉 It’s amazing what not being constantly irritated does for being able to understand what is going on around you, interacting, and learning. (I believe that’s the theory behind Risperdal use for autism?)
    — — — — —
    As for the rest of the post, here’s to hoping that one day you manage to rewrite your beliefs about what Hubites/ASAN goals and beliefs are to more accurately reflect reality. As well as what “cure” means.

  8. Dwight F says:

    @storkdok
    Ouch, that sounds really brutal. :/ Good luck on getting that straightened out.
    Are they worried about him taking too many breaks? Token systems often work for curbing that, where the child has a certain number of break tokens, physical chits or disks or such, and they “spend” one to take a break. The child starts each day with one or more, usually more like 5 or 6 depending on where they are in development, and over time the number of tokens they get each day are reduced down till the excessive break taking is gone.

  9. Hai Dang says:

    It is great to hear that things are working out for Charlie. A positive and accomodated schoool environment will bring more breakthroughs in language skills for Charlie.

  10. Louise says:

    That norepinephrine research on “Down Syndrome Mice” is very provocative. I read the same piece yesterday, and it really gets the mental wheels of implication turning.
    What I’m interested to see (which of course wouldn’t be reported yet) is what the neurophysiological changes are to the precursor-treated mouse brains. Is the chemical utilized solely as a drug that works while present in the brain, and then needs to be renewed with more doses? Is there any indication from the direct examination of the neurons in the hippocampi that these cells permanently altered, or sprouted new, more “normal” cells? Where new neuronal connections grown in the presence of the newly-available norepinephrine?
    We live in a fantastic age of brain research. Between the growing knowledge we have of how neurotransmitters operate, and how brain plasticity permits real perceptual and cognitive development and changes, we are facing all sorts of new paradigms for people with all sorts of brain issues.
    (But the discussion of problems associated with those paradigms must be left for another day.)

  11. autismvox says:

    @Jill, I had not thought of that—I’m not so sure how Charlie associates those words; conjugating verbs not having been a strong point for him……. I don’t think “break” and “broken” have actually been used in the same contexts with/for him.
    @Louise, “no geographical cure,” as Jim and I frequently remind each other!

  12. beautyobscure says:

    From what friends in the ABA world tell me. The very rigid ABA style is really the “old school” approach with the current thinking being about flexibility, naturalistic, and appropriate fading.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • What’s all this about?

%d bloggers like this: