Trying to figure out what to focus on. Thoughts?

[MomOfABunch]

I haven't posted about DD in awhile. The last time we were in a TERRIBLE behavior place. Now, 12-18 months later, she is doing so well! The behavior issues are mostly under control and she is enjoyable to be around mist of the time. This is thanks to correct meds and a great private ABA school with 1:1 support for her? At the end of last school year, she even started to make some academic progress. That had been impossible before due to her extreme behaviors (multiple hour tantrums, property destruction,etc.). Over the summer, she mastered counting to ten (which has been on her IEP since probably kindergarten!!) and she can now match upper and lower case letters. Small things, but HUGE at the same time. I had a meeting with her new teacher last week who said that she can sequence numbers 1-25 independently and that she knows more phonics than we thought! All this is super exciting and life without her prolonged tantrums is soooo much better.

My husband says that I should be happy enough with that, and believe me, I am! For the first time in a long time, I feel like she may have a future that doesn't involve a residential facility. Now that she doesn't spend her days screaming and I don't spend my time with her desperately trying to keep everyone calm, I see so much potential for her future. She has quite a sense of humor. She loves to have books read to her. She loves to do arts and crafts. Her comprehension of language and texts that have been read aloud are excellent. Here are the major problems:

 

1. she can't read. She knows a handful of sight words, but that's it. Since the summer, I have been working with her and she's stuck at blending. She knows the sounds of individual letters, but can't put them together. She can't stretch out the sounds, does that make sense?

2. For math, she can rote count to about 15 and sequence numbers to 25. No idea of how many any of the numbers are.

3. She can't write. Not even her name.

4. She has significant articulation issues,.

5. She has a serious lack of functional living skills.

6. Her fine motor is terrible.

 

So I guess here's my question. From the above list, what are the most important for a 12 year old girl? What areas are really important for her long term?

 

TIA.

[PeterPan]

Well I'll just throw this out, even though I'm sure you've thought about things and worked on it.  Have you ever looked into PROMPT?  The Prompt Institute - Home

PROMPT: Speech Production Disorders - YouTube

 

Phonemic awareness usually connects to speech.  Has a therapist tried LIPS with her?  

 

This is Rapid Prompting (not a speech method, totally different) if you are trying to work with her yourself.  There are videos on the site that demonstrate ways of teaching reading to non-verbal children.  

Halo-Soma - Rapid Prompting Method for Autism - www ...

 

My ds receives PROMPT and the SLP recently brought in an OT.  The OT specializes in functional living skills, things like being able to make a bed, load a dishwasher.  Does the school provide OT?  I'm not exactly in your shoes, but I would consider a push on speech, if she has never had PROMPT, and also OT, and see what that changes.  Our SLP brought in a 2nd SLP who is trained in assistive communication devices *and* PROMPT, so some kind of blend might work for her.

 

I haven't been where you are exactly, so take that with a grain of salt.  But fwiw, I know someone who brought her non-verbal 12 yo in for PROMPT and he's making progress.  It's just really slow-going.  Someone who does both PROMPT and the assisted could give you counsel on that.  

[MomOfABunch]

PROMPT is how we taught her to talk. I'm very familiar with it and it is awesome! Her private speech therapist who did PROMPT and was NDT certified retired a couple years ago. I've been trying to find someone as good, but am still looking. At school, she gets speech, OT and PT. The OT and PT at her school are excellent and I don't feel the need for extra outside. She gets an hour of OT and a half hour of PT a week and they work with her together. Speech at school is ok. Very knowledgable but doesn't do PROMPT. She gets an hour and a half a week.

 

We haven't tried LIPS. I'll check out the video you linked to, thank you!

 

I did do the Barton placement test with her recently and she couldn't pass it. She couldn't count the number of words she was saying. But she also has no idea of 1:1 correspondence?

 

Who does LIPS? I know I've heard of it before....

 

Thanks for the ideas!

[PeterPan]

LIPS is by Lindamood Bell.  Sometimes an SLP will do it or a reading/dyslexia tutor.  

 

It's all really above my level of experience.  I know they are increasing the number of PROMPT tutors, so you might do a fresh search on their provider locator and see who you can find.  We have to travel for ours and one summer we went down and stayed for a week to do intensive therapy.  If there is someone but it's a drive, that might be an option to consider.  

[bdjjmj]

So happy you have made such great progress, what a huge victory! My DS is 10 and I wanted to share a few thoughts many you may already know about or have tried . To answer your question at age 12 I would say functional life skills and reading skills would be most important, though I would still try to work on everything you can.

 

READING: My son had the same problem as your daughter, he learned all letters sounds and then hit a wall with blending he was finally able to blend/learn a few word family words from watching leap frog videos but beyond that blending was a bust. We have started working on a sight word curriculum because of this. Some will say switching to sight words is like giving up but for us he has learned so many words this way in the last six months we cannot argue that this is how his brain works best. We purchased the EDMARK curriculum the regular program is very expensive by there is a software edition for homeschoolers that we got for $200 . Still not cheap but well worth it for the progress we have seen. We are also still doing a phonics program cocurrently on the computer called reading bear and Click N Kids. I would caution using two methods though as it may confuse some kids. You might also consider the book teaching reading to children with down syndrome , another program that teaches via sight words. If you would still like to pursue phonics the other programs you will see here that moms have had success with include I See Sam reading & Stevenson reading, Sound foundations

 

MATH: I strongly recommend Teaching. Math to children with down syndrome. The activities in this book have helped many kids I know learn the math survival skills necessary

 

WRITING We as so many have worked with the ideas Behind Handwriting without tears. Since starting this program last year my son can now at least trace his name in all caps. He has a horrible grip and the letters are not pretty but if he is only to gain one writing skill his name would be my goal. I would also consider teaching typing or learning the letters on the keyboard as an alternative as so much of the world is around typing now. Obviously like my son she can't spell but I am teaching him where the letters are so if we ever get there in the future the keyboard is a familiar setup. When he wants to look at a website I spell out the letters for him and he finds/types them. Every morning I have him type his name 3 times after 2 months he can now can spell the first 3 letters of his name himself.

 

FUNCTIONAL SKILLS the book Steps to Independence was very helpful to me and follows some of the logic of ABA as well

 

FINE MOTOR: this skill seems to be so hard to work on as it is so tiring

for them. I just try to keep working on skills everyday and hope for as much progress as possible. Some great resources are the blog OTMAMA and the books teaching fine motor skills to children with down syndrome

[MomOfABunch]

So there's a Linda Mood Bell site not that far from me. I called and talked to them and the recommended LIPS as well. She has a screening scheduled for next week. They want to work 10-20 hours a week with her for about 6 weeks and then taper off. This sounds great, except they want $115 an hour. That's nuts, right? An hour or even a few I could probably do, but how do people afford that? Can I just get the materials and do it myself?

 

I contacted a couple PROMPT SLPs within reasonable distance. We'll see if that works out.

 

Bdjjmj, thanks for the resource ideas. I'm going to check them out. We've done and done and done HWOT. I love the program but she just doesn't get it. She traces well, and has since like kindergarten. But she can't seem to make the transfer to writing without tracing. We've been told it's a motor planning/processing issue and not so much a fine motor issue (though she is weak). I got the new Keyboarding Without Tears and have been very disappointed. In the k level, she is expected to hold the index finger of one hand down and then press keys with the other hand, while keeping the index finger down! There's no way she can do that. I gave he OT her login info last week to see if she can come up with an idea to accommodate her fine motor issue. I'm glad it only cost $6.50!

[PeterPan]

That seems really ambitious, what the LMB center is proposing.  You'd definitely do that with a typical child, say a dyslexic, but you have a lot of things going on.  Might be better to do it yourself or go into that one slowly.  Does she have an intellectual disabilities?  Since they're charging as much as a SLP costs around here, in this case you might be better off with an SLP doing it.  That way you're not getting someone who is merely a tutor with no experience with severe apraxia.   :(

 

That's wonderful that there are now some more PROMPT trained therapists near you!!  Speech and effective communication unlocks SO much else.  It unlocks frustration behavior.  It will improve her ability to hear sounds and discriminate words.  Maybe the SLP could even weave in phonemic awareness if that's a goal for you.

 

You know, this is a total aside, but someone else in this thread mentioned going over to a more sight word/visual approach to reading.  That's what Rapid Prompting does.  Might be worth a thought.  

[MomOfABunch]

I agree about the LMB center! We'll go for the screening and check it out, but I don't have $7K for this. Hopefully one of the SLPs I contacted yesterday will call. She learned to talk with PROMPT. Silly me, I didn't even think to try it for reading!

 

DD is boarder line ID. She's been very difficult to test in the past due to her behavior issues. Past testing puts her ID and she has a Medicaid waiver. I've been hesitant to get her tested recently because if she scores over 70, she will lose her waiver. She is probably somewhere in the 70-80ish range now that she is appropriately medicated, so says her psychiatrist.

 

She's been working on sight words at school for YEARS. She can't remember them.

 

I watched some videos on rapid prompting. It looks interesting; I'll have to do some more digging about it.

 

OhElizabeth, I found an old thread of your about LIPS. Did you ever go back to using it?