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Joyful Journeys

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Everything posted by Joyful Journeys

  1. That's where I am! Hugs, glad it has brought relief.
  2. I'll reiterate the "don't sign anything" advice! Ugh, the system has gotten my naive self twice. My son was getting an hour of speech a week through EI. He made some gains but not nearly enough. What will he get at the special Ed prek? A SLP TWICE per 9 weeks to "monitor progress." Apparently the 15 minutes of one on one time he may have with the two classroom teachers will be enough 🙄 They are "the best" to deal with this via immersion. Baloney. He'll bet getting a private speech eval that I'll bring to his next IEP meeting. I'm mostly sending him just for the social aspect and to give us some breathing room to school the older two. But for them to say that's enough to get over being a year behind, crazy town.
  3. Well this is fascinating, thank you! I would actually love my 6 yr old to do it, but I want to wait til she is 7. She very much presents with ADHD symptoms but she has had speech trouble in the past and still does, though it is subtle. DD8 definitely is not hearing sounds properly sometimes as I've realized with her spelling "alpl" (Apple) and "hultel" for hotel etc. so if that is enough in itself to get it checked out, we will.
  4. I was watching a video and they said that after three an autism dx is right over 80% of the time. Before 3 it's fuzzy because symptoms are still emerging. If I had my son evaluated last year at 2.5, I doubt he would have gotten the dx. We go in Aug to the university clinic, and I'm going to be shocked if he is not, despite decent eye contact and pointing. He will be just shy of 3.5, the repetitive behaviors are becoming more and more frequent. Last year it was just the speech delay really and a lag in play skills that I just chalked up to him not liking dolls lol. Now, as he has gained more language, he has actually gotten *worse* behavior wise. Non compliance in him looks like a knock down drag out fall on the floor, bang your head to the floor scenario because someone else opened the door when he was planning to do it, or we are out of pretzels, or I took the baby out of the car seat to feed him and that's not where he is supposed to be. Like kbutton, he can keep it together in new exciting places for the most part, so nobody understands my suspicions. Him bombing his 3 yr ASQ was the first clue to a medical professional, up until then, he was mostly on track. We have the peer issue too since he's not in prek. His speech is about a year behind, both receptive and expressive. He hasn't had speech since February when we moved and I often wonder if it's the complete change of everything he knows compounding the issue. I'm sorry you're in a place of uncertainty, it's so hard! Maybe my son isn't on the spectrum either, but we are going to have to intervene in some way for all of our sakes. Kbutton you saying stand your ground vs tiptoe is my life to a T! I most often choose tiptoe, so I can continue to take care of the rest of the children.
  5. And I have thought about CAPD but she doesn't have a lot of symptoms? She's kind of unsteady with mulitstep directions, but she follows conversation fine, doesnt complain in noisy places etc. So for her auditory recall to be so low, I kind of want to chalk that up to attention/memory etc?! I could get an eval done at a university not too far away, though, so I'll look into that later. And she also had an ADHD screening through our ped. We'll find out those results next week. A mix of a computer test, questionairre and bloodwork to check for any other deficiencies.
  6. The place I called that can test for LDs is just a psychology practice, not nueropsychologist and will be cheaper than VT by about half just paying the cash rate. There's no wait, I chose next month to give me time to save. And yes, I just have no idea what to do with her instruction wise right now.
  7. I'm so sorry, I'm just now seeing this question! She was taught to read mostly with Reading Lessons Through Literature. She was blending CVC in public K, and with some AAR the second half of kindy. She responded well to the OG style, get er done approach with RLTL and she is up to level 3 now and suddenly all sorts of issues are coming out of the woodwork. I wrote back to the school psych and she said that she didn't test DD's working memory or do a CTOPP because DD showed *zero* signs of dyslexia. She decoded slowly, but accurately, just mixing up the front and back of a word a couple times and choosing the wrong sound for vowels. I still can't figure this out, when she has never read anything totally accurately with me. I now have the results from her testing with the VT to throw in the mix. During her testing, she was unable to recognize when a letter was reversed or not in proper orientation 14 times! Whoa. She made 4 errors writing them, putting her at a 5-6 year old level, well below expectations. The doc said her reversal issue could be even worse then she lets on. She is compensating really well, likely guessing what word should come next. Here is where things get interesting? In one subtest of Visual Perceptions Skills, specifically Visual Sequential memory, she did great, well above average. She has always done well with things like patterns in math and this was all done with pictures. Yet her auditory perception, tested with the Auditory-Visual Integration test, she tested quite low, 10-25%ile. This test involved listening to a sequence of numbers, then reproducing it either by saying it or writing it down. She did better with things that she heard and had to reproduce, versus things she read which isn't surprising, but both were low. This shows an overall issue with working memory..the very thing I wanted tested from the school for crying out loud! She was again placed at a 1st grade reading level, and she is heading into 3rd. The doc suggest 7-9 months of therapy... :scared: She said the three months I was told before would only touch the convergence issue and not the visual processing. They will integrate metronome work. I'm dismayed over the cost, but with DS3's issues, I know there is no way I can do enough at home, I have to outsource this. I have an appointment scheduled with a private psych to test for LDs. They say it's about 3 hours of testing and it's 3 visits. The gal on the phone couldn't tell me the exact test names that will be run, given my history before, I'm going to be really pushy about knowing what I'm paying for :laugh: Is there any reason at all I should wait until we have some VT before this appointment? 7-9 months is a ton of time and I think it would skew the results if I've remediated issues? The auditory piece is really interesting to me, she's had no speech issues.
  8. Oh goodness! Bless you, what a struggle. My kids are little but the sulking over no screens drives me bonkers. All the best figuring it out with specialist!
  9. Yes between all the grandparents I think we'll have it covered! I've not been away from the baby all day, my last nursling, but he'll be 13 months then and may be mad, but will be ok. My husband is taking off work and coming which is huge. I do all of this alone normally, he has never been to any child's appointment (no paid time off), but I refuse to do this one alone.
  10. I have zero experience to help with his but had a idea to perhaps switch her day around? Evening school perhaps? I know I've heard that teens perform batter later in the day especially when you say she often falls asleep. So maybe try to start after a nap? Maybe she could be involved in helping the others, and doing some creative personal work in the morning, and then get down to business when they are done around 2 or 3?
  11. It would be the long one. They would be with him for about 2-3 hours in the morning, we break for two hours while they compile results and then we come back that same afternoon for a parent conference. The short intake was about an hour where she just observed him playing and asked me lots more questions. Perhaps later in we'd still need a nueropsych eval? Are those much longer?
  12. I understand what you're saying, a crystal ball would be nice. I should be concerned with the here and now, especially with the way he interacts within our home. I hate to put so much weight on a label, but it really is something I need right now. I need something to cling to, that this "thing yet to be determined" is what is rocking his world. I know therapies cross over anyway, but the ADOS would at least be measuring things no professional has focused on yet so I'd have more information to sift through. And gracious I filled out every diagnostic questionairre known to man, typed up a page and a half on our daily life, I pray that's enough for something to hold on to. Now whether he cooperates or not? Mercy. They seem to prefer I not be in the room and I can't imagine he'd recover from that to even do anything. He has not been left with strangers in well over a year. I look back on today..he's asked me how old I was about 3 times. I asked him his name and he said "me." He is currently putting together 5 Legos in the shape of an airplane that I made for him, and has been taking them apart and putting them back together the same way off and on for the last few hours. He'll likely sleep with them. My sweet boy. "Is that autism?" I ask myself. Doesn't matter really I guess, it's just him.
  13. On your last sentence yes! He is improving, ever so slowly, so I think we'll maybe I'm not giving him enough time. But he's only up to say a 2 yr old level and gosh in a couple months his agemates are off and running in prek acquiring an immense amount of skills and language he is nowhere near ready to grasp. So in a year, he'll be where a newly 3 yr old is at a time when kids are getting ready to enter K and that is a huge huge difference. But yes, my question for sure is this a lifelong difference or something that with targeted instruction he can overcome and be completely on par later on. And I'll put this link here for anyone else reading, lots of videos on different methods and it was nice to see TEACCH in action specifically! There is actually a video on the "best time for diagnosis" which answered my original question! http://www.interactingwithautism.com/section/understanding/diagnosing
  14. Indeed! This is becoming more clear. Even though I thought the speech therapy he received before was only so so, she did work explicitly on turn taking, something I would never have thought to do as my older two just picked it up. She said my turn, waited, made sure he was looking at her even if he tried to grab the ball or whatever and performed the action then said "your turn" before she gave him the ball. Something so simple but wow, he does it now with me and yells "my turn" to his siblings. I'm most looking forward to help in this area as I just can't see how he'll get where he needs to be any time soon without this type of instruction. And ready to spit! >.< I'm not confrontational at all, and I can already see it's time to get to work and be *that* mom lol.
  15. That is the hard part. When we went through the county's early intervention to see about preK, their pysch said she didn't get an autism vibe at all. He pointed to things when we went outside, he was in heaven as a plane and a fire truck went by. He didn't truly look at anybody the entire time. We were there at his happiest time of day in a room full of new toys and he did not engage her in play at all. I thought it was funny that there was a toy police car that had a siren. He would push it and listen, then keep playing with the little batman motorcycle. Every so often he would realize it was off and turn in back on, but not to enhance his play, just to have the noise continue in the background. He did it at least 5 times. After the pysch gave her opinion, I prepared myself for the folks at the center to say the same, even though I knew they had different goals in mind. The EI folks didn't really take his behavior into account, offered him no OT since his motor skills were fine. He's not going to get any one on one speech therapy despite being a year behind! Trust we will pursue private help. The researcher at TEACCH says he does have good eye contact..when he wants to! Yes, that's it exactly. He didn't engage with her either, and "hurt self" about 10 times, falling on purpose or randomly pointing at body parts a toy touched in the 45 minutes we were in there. I'm thankful we live near both UNC and Duke, places leading in research so if a dx is to be given I imagine it'll be there! She also said that if it's not autism, they would be able to tell me fairly well what his struggle is, whether it be just speech holding him back, sensory things etc. Now to just try to enjoy the summer and get through each day one moment at a time. He can be so happy and engaged some days, and then a complete basketcase the next.
  16. I just wanted to thank everyone again for their input. Things are about the same or worse around here unfortunately. He easily qualified for special Ed prek in the fall, being a full year or more behind in all areas except motor skills. We had our intake meeting at TEACCH, the local university autism center, and they recommended coming back for a full day eval. We'll find out the results on Aug 24th.
  17. Oh my goodness, I'm sorry that something similar happened to you and OneStep, but it is a comfort at least that it just depends on the test and the evaluator. I did have her read with me more and she is certainly doing better overall, which is nice, but I can't believe all the signs have disappeared and she is fine. I just dropped her off at her VT appointment and they said it would take 1.5 hrs! I'm hopeful something will come to light, they told me it will help them see just how much her vision is effecting her processing.
  18. She will start soon. Appointment this week for a final diagnostic to customize her plan of care. It may very well look at her working memory too and give me some insight I couldn't get from the schools. I initially thought it was purely vision, but after her Barton screening, which requires no actual reading, being such a flop, I thought something else must be going on too. I'll get on a waitlist somewhere, and likely we'll be done with VT and see where she is.
  19. Yes she has convergence insufficiency. That aside, I'm still shocked that none of those things that are often mixed up in dyslexia symptoms occurred during the eval.
  20. No I was not. Apparently she showed no signs at all of phonemic awareness or working memory issues. No signs of dyslexia present. I'm at a loss. She's been doing all those things for months. Maybe a break in reading and she has improved? I just don't know, it's like she evaluated a different child. The only issue she saw was herchoosing the wrong vowel sound in some cases. Just to make sure I'm not crazy, I had her read a chapter in a book that I know in his her reading level. She skipped a word, started to decode sq as sp, subbed words like this for those and do for did and on and on. Yes it could be vision related, but I cannot understand how she made zero errors like this with a total stranger 3 weeks ago. She has done the same with two other evaluators. I'm just baffled at all of this.
  21. I don't know. I've signed the forms in the meeting stating I agree with what was done and decided upon. My husband now says he'll just pay for whatever. Maybe he is finally coming around, though he still just thinks they should be in school, the very place that didn't bother to test her for what her actual issues are.
  22. I have a message in to be sure, but it appears that she was not given any of the subtests that cover working memory and processing. I have scores for Verbal Reasoning, Nonverbal reasoning, spatial skills and then a general cognitive score. Reading up on the tests there are a lot more subtests that do rapid naming and such and I don't see that on my score sheet at all :(
  23. We don't have one here. They didn't even do the WISC! I could cry, I'm so angry. Ok they did DAS--2..does that cover the same things?
  24. We did have an ADHD screen through our pediatrician this morning actually. We'll see what comes back with that, it is pretty clear in my 6 yr old but not so much in my 8 yr old.
  25. No on ADHD, and just a basic hearing screen. I asked about tests up front and they would not tell me what they would do. In my letter, I specifically asked for phonological processing. But whatever, I'm done with them and only did it to appease DH's wallet lol.
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