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MidnightHM

13 year old Reading Grade 3

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Background: My 13-year-old daughter had a heart transplant at 9 and we suspect some brain damage from the bypass machine. Apt in Dec with a specialist for that. 

Today we FINALLY were able to get an evaluation done by a SLP who listened to what we said. Her verbal scores are normal but she is reading at a third-grade instructional level, writing is worse. She remembers almost no details about what she reads. We have done both phonics and sight words instruction and have made almost no progress in the past 3 years. I feel like we have tried everything under the sun for reading, writing, and spelling. I'm at a loss as to what to do now. 

Edited by MidnightHM

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I'm so sorry.

I am assuming that you are homeschooling, since you don't mention a school being involved. I think that the SLP's report is a good start but that you will need much more information, preferably a neuropsychological examination that will examine all aspects of cognitive and learning abilities. What kind of specialist is she seeing in December?

I'm wondering why it took so long to get an SLP evaluation and what that indicates about the difficulty of getting further screenings. Many people whose children have learning disabilities end up having to pay cash for private evaluations, but with a brain injury, I would think insurance should be involved. If this specialist you are seeing is with a hospital system, see if you can request for a social worker to be present for you to talk to, and ask for a referral to a neuropsych. Sometimes a referral from a doctor can make things happen more quickly and with more help from the insurance company. The referral can come from the doctor, of course, but I suggest asking for a social worker, because they often know of resources that would not come to our attention otherwise.

People may be able to make some suggestions about materials to try that you have not yet. There are curriculum options for homeschooling those with special needs. However, a NP should be able to make suggestions about teaching methods that will be more effective, and that could help guide curriculum choices. For example, a reading program for those with dyslexia might be a good option, because it would approach the learning in a different way than a general phonics program. But that is just a guess on my part, since your information is limited so far.

Have you sought any help from the public school? Are you aware of the kind of help that homeschoolers can get from the public school? They are required by law to run evaluation testing for homeschoolers with learning struggles. Some (but not all) schools will also offer services to homeschoolers, such as speech therapy, occupational therapy, or sessions with an intervention specialist. You would need to learn what is available in your area, but posters here on the LC board can give general advice about that.

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25 minutes ago, Storygirl said:

I'm wondering why it took so long to get an SLP evaluation and what that indicates about the difficulty of getting further screenings. Many people whose children have learning disabilities end up having to pay cash for private evaluations, but with a brain injury, I would think insurance should be involved. If this specialist you are seeing is with a hospital system, see if you can request for a social worker to be present for you to talk to, and ask for a referral to a neuropsych. Sometimes a referral from a doctor can make things happen more quickly and with more help from the insurance company. The referral can come from the doctor, of course, but I suggest asking for a social worker, because they often know of resources that would not come to our attention otherwise.

The wait lists in my area are crazy. From the time of referral it took us over a year to get into therapy then her SLP moved and its been several months since then to get into a new one. (My other daughter is on 3 waitlists for OT and has been for 16 months). Getting into Nuropsych has been a similar struggle. That's where we are going in Dec. The schools here are slower. A TON of places around here won't see kids over 10. We had to go through her transplant clinic to get into a nurophych clinic over 3 hours away.

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Like Story, I hope that you mean you're getting a full neuropsych eval. Is the SLP a reading specialist? What tests did she run? Did she run the TILLS or a CTOPP  or ??? The more info you give, the more we can help you find holes. Sometimes the reason they're not finding the issues is because they're not running the tests. I don't know about brain damage from medical procedures, but the neuropsych I used with my dd years ago actually specialized in it. Unfortunately, it's a rather common thing, sigh. So you're not alone. Will there be a lawsuit or is there insurance coverage? 

I definitely think you need super thorough testing. It's not being a pest to bone up on the tests and find out what else they could run. I can tell you that those tests like the TILLS and CTOPP are things a CTOPP ought to be running. Here's a blog from an SLP who is sort of an expert/guru on testing https://www.smartspeechtherapy.com/what-makes-an-independent-speech-language-literacy-evaluation-a-good-evaluation/ Also on there will be narrative language testing. 

I'm sorry there's a wait to get in for your psych testing. That's probably a good sign, and you want to make sure it IS a neuropsych and that he is going to do LOTS OF HOURS. Like if this psych is only a clinical psych and only going to do 2-3, walk. Your dd is going to need 4-6 hours minimum of testing, the more the better. If this will be done at a hospital and on the insurance's tab, push hard.

Now, just for what you can do quickly? This test gives you lots of info, takes less than an hour to administer, and is only $7. It's used in research studies and by schools tracking reading issues. It might help you find areas of weakness and relative strength quickly. https://rise.serpmedia.org  

But seriously, feel free to post any results you've got, what the tests were, etc. People might be able to help you find things in them that your SLP missed.

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8 minutes ago, PeterPan said:

Like Story, I hope that you mean you're getting a full neuropsych eval. Is the SLP a reading specialist? What tests did she run? Did she run the TILLS or a CTOPP  or ??? The more info you give, the more we can help you find holes. Sometimes the reason they're not finding the issues is because they're not running the tests. I don't know about brain damage from medical procedures, but the neuropsych I used with my dd years ago actually specialized in it. Unfortunately, it's a rather common thing, sigh. So you're not alone. Will there be a lawsuit or is there insurance coverage? 

I definitely think you need super thorough testing. It's not being a pest to bone up on the tests and find out what else they could run. I can tell you that those tests like the TILLS and CTOPP are things a CTOPP ought to be running. Here's a blog from an SLP who is sort of an expert/guru on testing https://www.smartspeechtherapy.com/what-makes-an-independent-speech-language-literacy-evaluation-a-good-evaluation/ Also on there will be narrative language testing. 

I'm sorry there's a wait to get in for your psych testing. That's probably a good sign, and you want to make sure it IS a neuropsych and that he is going to do LOTS OF HOURS. Like if this psych is only a clinical psych and only going to do 2-3, walk. Your dd is going to need 4-6 hours minimum of testing, the more the better. If this will be done at a hospital and on the insurance's tab, push hard.

Now, just for what you can do quickly? This test gives you lots of info, takes less than an hour to administer, and is only $7. It's used in research studies and by schools tracking reading issues. It might help you find areas of weakness and relative strength quickly. https://rise.serpmedia.org  

But seriously, feel free to post any results you've got, what the tests were, etc. People might be able to help you find things in them that your SLP missed.

6

I should get the full eval report for the SLP next week. She really stressed that she wants us to work together so I'm hoping she will be more helpful than the last SLP. I wasn't with her for the eval because I was at my other daughters PT. It is Neuropsych I don't know if they are doing all of the testing at this apt or not. They weren't super clear. I will be up there for cardiology in Nov and will find out then what to expect at the Dec NeuroPhych apt then. Our Social Worker and Coordinator up there are super helpful. Once I told them we were having trouble locally I got a call with an appointment date up there. It's just trying to see anyone within a 2-hour drive that's a nightmare. 

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Oh dude I drive 2+ hours each way for 8 years (yes, you read that right) for weekly therapy! We do crazy stuff, lol. You've got this. It's a shift, but you've got it. 

Yes, that is encouraging if the SLP thinks she has a plan! Every step is good. 

My other two cents, and maybe you already have done this, is to look for things that ARE working and do more of them. You can't always solve quickly (or ever) some things that aren't working, but you can find pockets of strength, any pockets of strength, and begin putting time into them. She may have small gifts or strengths like making little crafts for people or a personal/personality strength or whatever. Whatever it is, find it and nurture it. In the end, we want to turn out a whole person who has a place in the world, and we do that by finding what they have to give, not only repairing what they don't have.

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1 hour ago, MidnightHM said:

so I'm hoping she will be more helpful than the last SLP.

The other challenge with SLP stuff is you can have so many goals that it's really not something they can get done in 45 minutes once a week, sigh. Like if your insurance will pay for more hours or if she can set you up with homework, it could be really good. 

My ds has literally 12 goals involving language in his IEP. There's no way in the WORLD for the SLP we brought on for expressive language to solve all that. He was doing 2 hours a week just for his articulation!! His language needs are just deep, deep sigh. 

The brain has so much neuroplasticity. Don't lose hope that you can bring about functional change. Let the SLP help you target pivotal areas, see if you can work together, see if she can have more sessions. With ds, we're trying to target pivotal things that will then unlock other areas. And really, there's progress to be made. The brain can make new wiring if areas were damaged and make new paths. It can happen! It can take time and she might need that neuropsych eval to figure out the affected parts of the brain. Once they figure that out, then she can go ok that's why math or whatever is affected, then they can rewire and go other ways. Maybe not perfection but function and a good life. She'll get there. Keep that picture in your mind.

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I'm glad it's a neuropsych that you are seeing. My best suggestion for preparing for that visit is to write down everything you can think of that might be important for the psych to know and take it with you. Not only info about her medical issues, but also what things she struggles with and the kind of academic help you have tried to give her. I found that in the moments of discussion, I can forget things I meant to say, and having it written out so that I can give them a copy really helps. Also take any written reports you have received -- they will want to see copies.

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I had a brain injury as an adult and became unable to read .  As some healing happened I went back to children’s books and relearned. I never did get back to my previous capacities, but did improve a lot. This is why I asked about her reading prior to surgery. Actually, whether or not she was reading and remembering at a normal 9yo level it might be worth going back to much easier reading level to gain some confidence and mastery. There are books meant to interest teens while being at a Low reading level. 

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2 hours ago, Pen said:

I had a brain injury as an adult and became unable to read

I didn't know this about you! I'm glad you were able to make progress!

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