I missed how this happened, but I'm excited for you! How close will she be to 6? If she's going to be close by that point, like within a month or something, it could be worth waiting. Or not. But we waited, because crossing over to 6 let the psych run more tools to get more diagnosed.
Well I hope they dig in and start to get stuff figured out! It may take time and have layers.
She turns 6 at the end of April. We're going at the beginning of February.
It sounds like he's really getting on board! So who will run this for you? What else will they run?
There is a dyslexia center in the larger city near us. I am only asking for the CTOPP at this point. I think it will be good to include in the info for the audiologists. They're already getting all of our psych, speech, and OT reports. What's one more? lol
I don't think they can do any other testing right now, if I'm remember correctly from when I talked to them back in June.
Have you done typical preschool stuff with her, like the MFW preschool activity cards? I think I did them with my ds around that age. I particularly like them, because they bring in some activities like sorting, categorizing, etc. that can be good. I think your more interactive approach sounds really good. Curriculum is not the most important thing, especially with a child with a diagnosed language delay, no matter what the cause of the language delay is. The Most Important thing you can be doing together is working together on language. Huge payoff there. Playing games, doing things that build language, whether it's following instructions, categorizing, wh-questions, rhyming, sequencing activities, etc. all good. Sequencing would be fab with her right now. Like little workbooks or manipulatives from Lauri with pictures you sequence and make little stories for.
Definitely play and definitely focus on language.
Ooh! I like those cards. I'll have to get them when we get paid again.
We were doing pre-reading AAR, but there was so much resistance that I decided it was better to stop and just try to build up her love of learning with other things. Then, bring in the hard stuff later. So, I guess you could say we've been unschooling these last couple of months. We go on nature walks and make picture with the items we find, we play games, we watch Magic School Bus and then read books or watch videos on the things she finds interesting in MSB, we do a lot of reading and listen to audiobooks when we are driving to and from speech/OT (so she's getting 4 hours of audiobooks a week, which is good training. She may not understand it all, but she's listening).
She's totally fine with sorting, categorizing, etc. We do it, but she's like "meh, whatelse you got?" lol We do tangrams, shape blocks, puzzles (she can look at the pictures and build it - good visual/spatial skills).
We've been working on rhyming. I threw some rhymes at her last night from a phonemic awareness test - "cat see" "dog hog" etc. She only missed one, so that's good. She can hear the rhyme, but telling me what the rhyming portion is is still a developing skill.
My friend send me Shiller Math, so we've just recently started that.
**I was going to say that she was able to sequence the events of Jumanji the other day when we listened to it on tape. I was just thinking "She really heard it!", but now I'm remembering that she was looking through the book while we listened. So, I'm betting that she was going off visual memory instead of auditory. Either way, she sequenced the heck out of it!
We do need to do more sequencing though.
People believe you! What you're saying now is the stuff that's distinct, that isn't explained by dyslexia, ADHD, language delays, etc. etc.
The tech AbleKids is developing sounds fascinating! That will be amazing to see how it works. I can see why you're excited! And to have your dh on board now, that's huge. I missed it, how did that happen? Researching stuff online is such a process, because you learn things till it all clicks in your mind and you're really convinced. Meanwhile the non-researching spouse is behind, trying to figure out how you got there and what to make of it, lol. And sometimes that click, where it all comes together and is obvious, is overnight.
Well good. And it's not that anybody disbelieved you, really and truly. It's more like if you were trying to sort out whether it was worth it to make a big trip, you would look for what differentiates it. You've got those things, so you've got such a STRONG PROBABILITY that you're nailing it that you are very, very, very on-track and wise. The stuff you're saying is HUGE. And just to get good evals will be huge.
So why February? Are they that backed up? I guess that's a good sign. What do they want before then? I'm just curious, more than anything. And what do they run? Will they do sort of multi-factorial and do more evals (SLP, OT, pysch, etc.), or do they do just audiology?
Part of what you're doing here, besides figuring out how to help her is creating paper trail for an IEP. Not that she needs one now, but it could happen. In our state, an IEP gets you access to a significant disability scholarship program. Maybe your state has something like that even or services that you would want to access. Like once you get that hearing support going, it would be nice to have a plan with an SLP for the language. Do you have SLP now? Or that is something on the table or not on the table?
Well good. It sounds like you've gone through the transformation from what is going on to this is going on, and everyone in the house is onboard and making it happen. That's AWESOME.
I had joined a CAPD group and I noticed several posts saying "We are not to discuss the Able Kids filters here. There is another group." Me, being naturally rebellious, wanted to know what was "forbidden" and confined to a different group, so I sought it out.
(The rule to not talk about it is because 1) not everyone agrees with the concept that you can test before 8. I mean, Australia frequently diagnosis earlier, but the US is pretty staunch on not testing before hand. 2) in the grand scheme of things, it's a small handful of people who choose to go, so they don't the support group monopolized by the questions. I get that.)
I did a lot of searches in the the regular CAPD group and the Able Kids group and learned more about it and approached DH about it. I asked him if he'd ever be willing to fly to Colorado to have her tested. I explained the filter and the testing and he said "Yeah, I would absolutely do that. Too bad we have to wait until she's older." Totally jumped on that - "Well, actually...." So, he said to call them and get an appointment asap(ish).
As for the timing, he has lots of projects and trips at the end of the year/beginning of the year. He really wants to go, so February worked best with his schedule. Also, it gives us time to get money saved for the trip and the appointment (and filter if she is a candidate).
Able Kids does not accept insurance for a variety of reasons, but they do have a scholarship program for those who need it. They do provide you with the codes so you can file to your insurance independently.
They are typically booked 3 months in advance, so we could have had a December appt, but Feb worked better for us.
What do they want before then? As in testing? Nothing really. They do ask that if we can, to send in psych/speech/audiology reports - anything we have as it helps them gauge better what they're looking for, what others have seen. (We also need to send in a detailed history...which reminds me...I still need to do that.)
I'm honestly not sure what to call what they run. I know it's a test that was developed specifically for their clinic. There is a normed language based test for older kids. The younger kids testing is for ages 3-5 (and they will run this so long as the receptive language is 3years.) Several people I have talked to say it's hard to explain, but it's just very different from the other tests their kids took at other audiologists.
CAPD is their specialty and all they focus on.
Yes, we see an SLP for 30min/2x a week. One of the reasons why I'm really want to either get this dx (or find out that we don't have it), is that it will open more doors for us in regards to therapy and insurance. As it is, my SLP can not work on the alphabet or letter sounds right now. It's considered academic assistance and insurance won't pay. IF we have the CAPD dx, then it suddenly becomes "payable".
I know I can work on the sounds and letters myself, but sometimes having that extra help is nice.
Yeah, you were way more polite than I would be.
So, just to back up, because I can't remember, did she pass the Barton screening? If she didn't and she's over 5, it would be fair game to consider LIPS or FIS. Personally I'd go LIPS.
Also, are there any modifications *now* you can make to make it easier for her to work together? You know from your reading that there are categories of APD, but that background noise is the most obvious issue that you can work to improve/isolate or structure around. Like the roku has cordless headphones, so she could watch documentaries with headphones and get the input directly, that kind of thing. Do the filtering aids seem to be a fix or a better? Will she need more supports on top of them? And then, just out of curiosity, do they wear them full-time or only at certain times? Do they have issues with becoming *more* sensitive when they don't have them in? For instance, with autism they'll talk about hearing protection (which it sounds like might sort of function similarly) and they caution you to only wear them so many hours a day. I'm curious to figure out what the AK devices are doing, etc.
She did not pass the screening. She was iffy on the first 2 sections, but the last section was impossible. The multi-step directions just did not work with her and having to listen to the sounds, decided which color to put where each time? It was a trainwreck. I did 2 and stopped.
(Her SLP is integrating APD listening skills into therapy right now. She's making her listen to different sounds (bell, drum) (bell, bell) (3 snaps, 4 snaps) etc and having her determine if they are the same or different. I believe they've moved on to rhythms, she's about 65% accurate on those right now. It takes a lot of concentration for her.
She loves the Roku headphones, especially if DH and I are talking. After awhile, she says her ears are tired, though and she'll stop using them.
The filters are an aid, like an FM system. They don't change how she hears things, but more - somehow - helps her filter the sounds better. You wear them full-time - except in the water (so swim lessons will still be a bit challenging for her). I don't think there is an issue of becoming more sensitive when they're out. I do know that there is definitely an adjustment period having them in, almost like if you had hearing aids for the first time - your brain is just having to make sense of all the new input and it's overwhelming/tiring.
I don't know if you saw the link I posted above, but this girl got her filter as a 20-something and it's fascinating how it helps her.
Yeah, I can see why you were offended by the margarita thing. On the other hand, to me, it's not personal or offensive. Like me, I'm used to my kid, so if somebody says that to me, I'm gonna go wow he's WAY harder for other people to work with than I realized. It's not my fault, because he has a disability. It's a statement of how severe the disability is. There are kids who are that hard to work with EVEN IF THE PERSON IS AWESOME. Like for workers we bring in, they NEVER want to do more than 3-4 hours. Never ever ever. Because challenging kids burn people out.
So, I don't know, but it's just something to think about. Hopefully one day you'll have enough assessment from a kinder, more thorough source that you'll come to peace with it. She's probably an awesome kid. My kid is an awesome kid. It just happens that my kid is astonishingly hard to work with sometimes.
You're definitely doing the right thing stepping up evals. It will take time. It won't be one piece, one label, one explanation. You're going to have layers. You might look into genetics. I don't know, I'm just really into that right now. Genes for Good will do the testing for free. Who knows what might pop up. Can't do her, but you could do you and the father.
So what is AK's take on meds?
Yeah, I mean, I sat in the room with them during the test. She was AWFUL. I have never, EVER seen her act the way she did for the psych.
I mean, from my own observations at that point and the actions in the testing, I am not surprised that she was dx with ADHD. I do wonder how she would test now.
So much has changed for her since then, though. She's no longer in the preschool where there was no structure. (The teacher was not doing a good job, come to find out.) Her actions were copies of a very wild, uncontrolled little boy in her class and she was pretty much imitating him during the session.
(One of the CAPD moms said "I even made my daughter appear ADHD on an eval. bc I was answering it according to her APD. But the therapist questioned me and we both knew she was nothing close to ADHD but I answered the questions under the wrong mindset".
So, knowing what I know now and having noticed how she responds to things, I wonder if I would mark her differently.
We are planning on testing with another psych next year. He works with the dyslexia center where dd will get the CTOPP. We could have had him evaluate her this past July, but we opted to wait since she had just had her other testing. I will probably email him again after we go to Able Kids to see about getting more testing. I am specifically going to ask him for the non-verbal IQ test, though.
AKs take on meds..ummm... fine with it? I *think* they will test with. I know they test without.
They said that it was ok to continue the supplement we give my daughter.
We give her a half-serving of Advocare Spark (a supplement drink) and it really seems to help her focus.
(a half serving has 60mg of caffeine - it helps some with CAPD; of course, as it's a stimulant, it helps with ADHD. Again, not sure which, but the caffeine and vitamins seem to help.)
Fascinating on the genetic thing. I'll look into that group.