mamashark
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Posts posted by mamashark
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1 hour ago, PeterPan said:
If the label gets you insurance coverage and opens doors for interventions, you want it. I would just say, as someone whose kid gets a lot of labels thrown about, that the one they've really wanted to avoid is ODD. That's the label that people don't like and don't want to have to use. But ASD, if you can get over the grief part, it's really not that bad a label. If you're dealing with anyone under say 40 or 50, anyone educated, that label will open doors.
Word to the wise. You're going to need to talk, but talk to people who are SAFE. Like it's not always relatives, sigh. Maybe your relatives are, but maybe a particular friend. The board is pretty safe, because we'll just throw you virtual chocolate and sympathize. So talk but think through who you talk with, sigh.
She addresses ODD in the paperwork, explaining why she DOESN"T think it fits him. Which I was thankful for. I have these torn emotions - on the one hand I felt like I was managing the behavior difficulties and now this "label" makes me feel wholly inadequate to continue to manage. but I know nothing changed from one day to another. I also feel like now I don't have to "do this alone" but I don't know what that means exactly.
And yes, my relatives are not safe to talk to.
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1 hour ago, PeterPan said:
And I don't remember the age of your ds, but he may be in that range where you still wonder and don't see the discrepancies so much.
He's 5, turns 6 in January.
Honestly I knew he had autism when we went to go to that first appointment. The time and "anxiety" diagnosis and then the improvements in behavior seen through the dietary changes and OT intervention were just strong enough that I settled comfortably into this "he's got severe anxiety and some allergies to various artificial food additives."
It brings into play the question of the "curability" of autism, which I know is a philosophical one, but at the same time, I see things that I KNOW are not neurotypical.
We are having to structure his time and social interactions more than should be required of a neurtypical kid, I structure our calendar so we have a down day at home after any busy day where he interacts with others. He has periods of regression with sleeping in his bed/accidents during the day/etc. I have to manage his protein/carb intake carefully, limit his screen time dramatically, watch his total carb intake, ensure he gets enough sleep, and if not bail on plans or we will have melt-downs. So basically he's a "new kid" as my MIL told us (which is big for her, because she claimed he was a "normal boy" a year ago.), but much of that is because we manage his behavior through the environment. We still deal with the anxiety being a huge problem from day to day.
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1 hour ago, PeterPan said:
Did she recommend ABA or bringing in a behaviorist?
Her recommendations included: continuing OT until such time as the OT determines he is no longer benefiting from what they offer (which we did - we were graduated from OT in August because they felt they could no longer provide meaningful services to him).
Whatever necessary services we can use to reduce his anxiety (OT, routine, structure, visual schedule).
For a mental health professional to continue to monitor his anxiety and provide further treatment if necessary.
Professional help for the potty training issues (which have been nearly resolved through dietary intervention, we will still have accidents at times, and right now we are in a regressive period of time).
A comprehensive speech and language evaluation including social pragmatic language.
An IEP if he ever is enrolled in the public school. (at about this point in the paperwork I started having trouble breathing...)
Any community support program available for children with autism/parent support groups.
and the final recommendation was an eval that includes the use of the Autism Diagnostic Observation Schedule to confirm the diagnosis.
That said, I was told by someone else that this is in fact an official diagnosis because the paper work includes the diagnosis list with ICD-10-CM codes listed next to each one.
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1 hour ago, sbgrace said:
I agree that it seems as if she made that diagnosis based on the parent/teacher evaluations rather than what she saw.
Much of the diagnosis was based on the paperwork, but her comments about her observations all seemed to confirm what she was thinking. She spoke to his communication, eye contact, and ability to be flexible with choice of play.
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A year ago we were pretty sure our son was on the autistic spectrum. We put our name on a waiting list for a behavioral evaluation with the only place near us that took our insurance and could diagnose autism. In January 2018 we had the initial visit. We filled out tons of paperwork and the Child Behavior Checklist for Ages 1.5-5 and had a Sunday school teacher fill out the teacher version of the checklist. Her parent meeting with us after 2 visits gave us an anxiety diagnosis and recommendations for OT and a picture schedule and then illnesses (the psych got the flu) and trauma (we had a traumatic death in our extended family) delayed our next visit until April.
In April she insisted on continuing her observation sessions and our final appointment in May saw us with almost no feedback at all. She was sticking with anxiety as a diagnosis, and told us she saw some fidgeting and some lack of focus. Our insurance changed June 1, and she was no longer covered and so we asked her for a copy of the behavioral evaluation for our records. She told us she hadn't done an official evaluation, that it would be simpler for her to have a phone conversation with the next psych we transferred to.
Now, in the meantime we had made dietary changes and began OT, and with both, but mainly with diet, saw a big improvement in his behavior. So my husband and I made the decision to not find a new psychologist at this time, and so I formally requested a written report from her of whatever she did do so that we could have it for our records to document our time spent with her. She called me back to tell me that she went over all our paperwork and wanted us to come in to discuss the possibility of autism. I declined, stating that we weren't interested in the diagnosis at this time and simply wanted her written report.
4 months after my request for the written report, I get in the mail yesterday an official "Psychiatric Evaluation Report" that is very detailed, wholly accurate to his behavior when we begin the process (even though we've seen huge improvements since then) and a diagnosis list starting with Autistic Spectrum Disorder. She kept the Anxiety disorder as well. She gave us a laundry list of recommendations including having us go to another behavioral health professional to confirm the diagnosis of Autism.
I feel like she didn't even read the paperwork until I asked for a report. I also am shocked that she was willing to give him the ASD diagnosis without us "coming in to talk about it" like she requested of us. Maybe I misunderstood and what she meant was "I'm changing his diagnosis and want to tell you in person instead of over a written report..." And what does confirming the diagnosis mean? Is it an official diagnosis or not?
My husband is inclined to not trust her at all given how the whole thing unfolded, and said that if our son is on the spectrum he's right on the edge of the spectrum. (Granted, he's a teacher and the kids he sees with ASD diagnosis right now are pretty obviously autistic and he doesn't have any experience with high functioning kids who might fly under the radar.) He said that people will likely define our son as "quirky" as he gets older.
And I've got a myriad of conflicting emotions and reactions to the whole thing, even though I was pretty sure he was on the spectrum when we started the process a year ago. And I live in PA, so I am not sure what the consequences of seeking ASD Services might be on our homeschooling, and a big part of me wants to just file the paperwork and ignore it entirely.
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1 minute ago, Rachel said:
When we bought a car that smelled faintly of cigerette smoke we had it detailed. The shop used an ozone bomb, I wonder if you could do something similar?
interesting - I'll have to look into that, see if there's something commercially available! Thanks ?
In the meantime I am exhausting the air from the living room window with a fan and used diluted baking soda/water to spritz the keys.
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My husband got a used electric piano yesterday and put it in the living room last night - it's great, only it reeks of cigarette smoke ? . I used baking soda on every solid surface except the keys because hubby said he didn't want me to powder them and ruin the piano. Today, the surfaces I powdered smell mostly better but the keys smell terribly. and now my living room has the faint scent of cigarette smoke ? . I have an air purifier running non-stop in the living room next to the piano, but it's obviously not doing enough. What do I do?!?!?!?
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14 minutes ago, PeterPan said:
It's quite popular in literacy SLP circles. It's over $300...
I realize the cost, my husbands comment was that it might be a way to break the cycle of continuing to try the same basic teaching methods while expecting a different result. It does seem to be quite different take on the concept of teaching reading. It is a shame it is not offered in parts instead of As an expensive whole. I would love to hear what anyone else experienced with it for a struggling reader.
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9 hours ago, PeterPan said:
What have you seen/read about this? I tend to be wary of the marketing on a product's own site, but the idea of teaching reading from an entirely new angle intrigues me... (even if the price makes it look prohibitively expensive...)
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1 minute ago, Pen said:
I added more to above at same time you were reading it.
Thanks ?
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What recommendations do you have for working memory?
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6 hours ago, PeterPan said:
So when did she end speech therapy? How old was she? Her vocabulary is low? It's true Barton is aimed at an older dc. If you were to slide, my two cents would be to slide to another OG program that has a younger target age. Here's another OG manual, totally FREE, that might be more age-appropriate. You can look it over and see where you are in the progression. You can use your Barton tiles with it to kick it up. http://www.marooneyfoundation.org/professional-learning.aspx
She has been finished with speech therapy from the time she was 5...that said, the blends she can't put together are sounds she can make in isolation. honestly, our 10 year old makes more articulation errors than she does. I'm going to take a look at this link, and the books you link to for High Noon, and probably just need to slide to something more age appropriate. My son who is k5 this year is just starting phonics and doing so well with phonics pathways that I think it woke me up to the slow, painful lack of progress my daughter is making.
And no - she has just as much difficulty spelling it the words, and now that I'm thinking about it, that is most likely a working memory thing.
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12 hours ago, Mainer said:
Is it just 3 letter blends, or other things too? How does she do with short vowels? If it's 3 letter blends only, I'd be inclined to skip them for now, and move on. It's mostly 3-letter blends. I do see troublesome signs of other issues, like the skipping of the first consonant in a blend at the end of the word - like b-a-l-k she would initially read as b-a-k, and some times she would start sounding that word out like this: "k-b-a-k, bak," prompt to check again, "b-a-k, b-a-l-k, balk". So starting with that ending sound concerns me too. Skipping this step won't fix the problem but it might help boost her confidence since we've made no progress lately, I'm kind of hoping Nessie does that because I'm sure it will not follow the same sequence.
I seem to be recommending Raz-Kids a lot lately, but it's a great place to find lots of books. It's motivating to kids because they get stars for reading and taking quizzes, and you can use the stars to decorate the interior of a spaceship, and to customize a robot. It's pretty adorable. They'd have things that aren't in the correct progression for Barton, though, if you're trying to limit reading to things she's definitely learned. That sounds awesome, I'll have to go check it out.
I looked at the Barton sequence. Honestly, I would do some things in a different order. Here is Wilson, for example: https://www.carlisleschools.org/UserFiles/Servers/Server_95479/File/Academics/Reading/Wilson Reading Program/wilson_scope.pdf and here is the Recipe for Reading (page 4): https://eps.schoolspecialty.com/EPS/media/Site-Resources/Downloads/program-overviews/S-recipe_for_reading.pdf?ext=.pdf Thanks for these, I think maybe looking at a different sequence might be a good idea for a respite!
There is also High Noon, which is again different. I say life's too short to be aggravated by a reading program - if you love Barton, stick with it, but if you're kinda meh in general, then... maybe try a different one. You could even take a break from Barton by doing the same skills in another program, and see if that's better - so you're not taking a break from reading instruction, just trying something different. Even just reading some High Noon books that cover what she's already learned in Barton. I took a break after Barton 1 and she made zero progress (well, I switched to Phonics Pathways, which is what I had on hand and it was a big flop) we went back to Barton for level 2 and she took such huge strides I was so motivated to continue and am just so bogged down now with no progress. I'll take a look at what else there is available and see if we can't both find new life for reading in the process, thanks for your recommendations!
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12 hours ago, PeterPan said:
Would you work on the three letter blends because they're hard to say or because it's hard for her to hold so many pieces in her head? You may need to take her working memory up higher to allow her to hold 5 letters *and* blend them. Working on working memory is almost always a good thing.
I tried Nessie, and the accent was a dealbreaker for my ds. Might not be for someone else. It would be a nice supplement, but still she needs to be able to do these tasks. Try the working memory. Also, how is she doing with non-sense words? It sounds like she's trying to get to the whole of the word quickly to avoid having to hold the parts in her head and blend. The way around that, besides of course bumping working memory, is more work with non-sense words. Barton includes them. You could see if there's any pattern, like she's fine with 4 letters of nonsense but struggles with 5, or she's fine with non-sense with 2 letter blends but stumbles with 3 letter blends, etc.
To build working memory, you can play games like memory, call out commands that she repeats and then does, do digit spans, etc. At that stage I was doing working memory work with my ds every single day. It definitely makes holding all the data to decode and pull into a whole easier.
I need to do some of that with her for working memory, see if that could be the problem. If it is, that's something we could stop and focus more on for sure.
Nessie accent doesn't seem to be a problem for us, at least not in the first day. We are going to try the free 7 day deal and I'm going to withhold judgement until then.
She does nonsense words much the same as real words - her vocabulary is pretty low, I've figured out, which makes many of the real words (especially in Barton when they use some odd words to keep the sentences readable) nonsense to her until we discuss the sentence anyway. I'll look for a pattern in how many letters she can hold in her head. I saw other patterns but didn't pay attention to that. (vowel is always correct, b/d she refuses to use the tool to figure it out or uses the incorrect hand so is about 50/50 on it, often will miss the beginning letter of a consonant blend at the end of a word - like will skip it entirely, will garble 3-letter consonant blends when trying to put the slow sounds into a fast word).
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14 hours ago, Lecka said:
Okay, is she making progress but slower than you would like? the progress she's made in that time was to have a few more sight words memorized, and gone from 0% to maybe 25% on words with 3-consonent blends.
Does she do that thing where she maybe says the vowel sound the most slightest bit off, and then doesn’t have any idea what the word is, and says it off like “I couldn’t possibly identify this word,” even though she is so close? No, she is actually really good with her vowels. She will tap and say the three consonants, then say them slowly, then say them fast but in the wrong order. And she has lost some of her automaticity so that she's back to sounding out every single word that has a blend in it.
Things like that?
Honesty I think blending is so hard and can take review and games and games and review. It's not the act of blending a word that's hard (she has to take the steps to do it - say the sounds, say them slowly, then say them fast), but it's the consonant blends in a word that trip her up if it's a 3-letter consonant blend. She also has to blend nearly every word again, instead of having any automaticity in saying the words she's read a million times.
If she is totally stalled that is different. If it’s frustrating slow one-step-forward, two-steps-back ———— I think that is par for the course. I would say totally stalled.
If her attention is lagging — you can try things like shortening the time of sessions, you can try using a system to let her see the time is doable.
You can use a timer.
You can have a sticker chart and fill it up. If she is paying more attention — give her extra stickers and reward her with ending faster. Don’t let it drag out. This kind of thing can work for attitude/attention, if it’s that she thinks it will go on forever.
I do a lot with count-downs also, hold up 5 finger and put down a finger for responses, say “wow, you only have two more to go.” That kind of thing. It seems corny but my younger son does great with it.
I also sometimes write things on index cards and then for a very good response let my kids rip up the paper. Like I can’t write something on an index again, lol. I don’t really like the attitude but it has been motivating and gotten them to pay more attention so they can get to rip the card. It can also work with “3 cards left and then we are done for now” if there’s a break coming up. It’s very visual that way. I've tried all these motivational ideas. We've used every positive reward method we could think of, and some negative ones. The most effective was when I used a time timer and set it for 15 minutes. Every minute she stalled or had a bad attitude I added a minute.
Edit: there are a lot of kids who have ADHD and dyslexia and anecdotally I think a lot of ADHD stuff seems to help kids make more progress. But I do not have first hand experience with that. It is worth considering though. I told my husband she's displaying classic ADD signs (no hyperactivity) but that it's ONLY when doing math and reading. I feel like it's less an ADD issue and more that she's figured out that math and reading are just HARD and she doesn't like doing anything hard, so she balks, gets distracted, stares into space, whatever allows her a few moments of peace from the difficulty.
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To answer the questions - yes she passed the Barton Pre-test.
She has received speech/articulation therapy in the past but has graduated from that. I ensure that any word I ask her to read is first a word that she can say correctly and we have not had a speech issue interfere with reading.
Hearing has been checked, as has vision. Both fine. She's 7 and a half years old.
We did not take 6-8 months off of Barton, just those optional books. We took 3 weeks off in June. Other than that we have worked every day but the weekends from January through now, with only a day here and there off for illness and fieldtrips as necessary. That's all on the first 3 and a half lessons of level 3. Lots of repeating sections, lots of games, lots of review. She has not read those specific books again since December but they should have been stepping back enough that they should have been doable.
I may try working with just 3 letter blends without the words to see if that helps. My husband suggested we try the online program Nessie too, as he would like to see if it helps to motivate her. She's able to say words when she knows them (repeating me say them) but when sounding them out, if she doesn't get an idea quickly of what it is, she has difficulty keeping all 3 letters in the correct place when going from say it slow to say it fast like a word.
I too have received the advice to talk less with my prompting, which for the most part works except that she does have an attention problem that has worsened over the past year and only during math and reading.
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I am wondering if adding LiPS would provide a piece of the puzzle that would be beneficial?
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In January of this year we started Barton level 3 after finishing level 2. We worked VERY slowly, putting in 30-45 minutes work a day, but making very little progress. We frequently repeated individual activities or went back to the beginning of a lesson and starting again. She has gotten very frustrated with it and I'm at a point that I probably need to just start back at the beginning of the level again, 3 letter blends get all garbled in her head so that on some words, no matter how many times she says the sounds slowly, she just CANNOT blend them into a word properly. So I took a break this week to have her just read to me the books recommended on the tutor side of the Barton site for practicing after level 2. She's not only made no progress since I first printed those books in December, but that she's lost some of the fluency she had at the time.
I feel like I'm doing the same thing over and over, hoping for a different result, and don't know what to do next. We play games, use flash cards, try to find ways to mix things up and practice, but honestly starting over at the beginning of level three AGAIN seems like a frustrating waste of time after months of working the same material with no progress. Part of me feel like I need to go back to level 2 instead to reestablish fluency with 2-letter blends, and then I wonder if I'm too invested in this method and that maybe I need to seek another strategy to work with her.
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Just now, Scarlett said:
Well, I need to know which one! ?
lol psalm 139:13
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yes, I picked out a bible verse to use ?
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nevermind, I figured out what I'm going to do ?
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Regarding the 5-htp - I took it both at night and in the morning. If, as @Peterpan suggested, it can be genetically indicated, then maybe it just is not genetically indicated in my case.
Regarding thinking patterns - I know I read somewhere before starting therapy that cognitive therapy can be as effective as medication and I went in determined to find out if I could really change my thinking patterns enough to not need meds. There were several things that I worked towards. First, I learned to identify what my stress thoughts/patterns were, and then find the fallacy in those thoughts and focus on positive thoughts or affirmations. So for example, when something would not go as I expected it to, I would instinctively think "I'm terrible at this. I screwed it up, (or I am going to mess it up!), I should never have tried this". Now I instinctively think *deep breath* "there is a solution to every problem."
If I am working on something outside (garden, hanging clothes, whatever) I might have thought "what will the neighbors think, am I messing this up? I shouldn't have come outside wearing this..." now I block those thoughts and focus on RIGHT NOW. How does the air feel against my skin, the sunshine hitting my back/face, the sound of the bug coming to the nearby flower, The subtle colors on the developing squash plant, the slight movement of the bug burrowing in the dirt, the feel of my breath entering my nose and exiting as I breathe back out. Awareness of any tension in my back, neck, shoulders. Correct to proper posture, relax my jaw, find joy in the gentle sway of the pine trees in the breeze, notice the chickens clucking and not allow my thoughts to stress or worry about things that don't matter right now.
A lot of what I do now is to bring my awareness back to stillness, quietness, my breath. Still the chatter in my brain. Quiet the worries and focus on now. Awareness of now, not of future or past. And I've taken favorite scripture verses and turned them into my favorite affirmations to focus my thoughts on during the day. A huge pattern in them is peace - and that is kind of my goal, to focus on the peace that can surround me if I just focus on this - this one thing - the next thing and not EVERYTHING.
It's been a multi-month job of daily practice and effort to identify thoughts that need to be changed and then replace them with appropriate thought patterns but I've noticed a HUGE shift in my mental wellbeing. And for me it was not ADHD. It was pure anxiety.
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I've taken 5-htp and saw no appreciable difference even at larger doses. I've also tried st. john's wort and had a nerve reaction to it (my nerve endings became hyper- a simple scratch would feel like it burned)
I found the best thing for me personally was a prescription for more immediate (immediate in the sense that after several weeks they had kicked in and provided relief) relief of anxiety and then a really amazing counselor who has taught me how to change my thinking patterns. I'm not saying the brain squirrels don't ever try to bother me anymore (haha! I love the term brain squirrels! I never thought about it like that before!) but I know how to kick them out now and I throw their nuts out after them whenever I find one! And I am not on meds anymore either.
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So I've reached out to the author of the book and as well to the founder of the National Institute for Play for more information, but all I can find right now is the negative impacts of lack of play. I can't even find anything on the older research mentioned that 30 minutes of play is a minimum amount of time for "magic" to happen in the brain. The thing I'm wondering, is, whether extended periods of uninterrupted imaginary play (how long is extended?) can be considered therapeutic for kids (and for what issues), and along the same lines, are these multiple 15 minute recesses that schools are trying to throw into the middle of their school days less helpful than originally intended?
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ASD Diagnosis...
in The Learning Challenges Board
Posted
This is interesting - I think this plays a huge part in people's inability to see some issues - surely nothing's wrong with this child because I like him! He's likable! Which if you think about it is kind of sad - a kid with a problem can be likable and still have a problem......guess a "visible" problem is more likely to have the same people feeling sorry for him instead?
Thanks for the book recommendation. I'm also in the middle of the book Differently Wired by Deborah Reber. It speaks to me because my eldest has SPD, my next has Dyslexia and then there's my son...