Help figuring out what assessments and therapies we need

[alicai]

I need help unwinding what is going on with DD6 and figuring out what to pursue. Some background: DD6 had an uncomplicated birth but was delayed in all her milestones. I guess I should say she was at the absolute tail-end of acceptable for all milestones and some were over. The ped said if I wasn't worried, she wasn't worried.  Looking back, I can find pictures as young as 6 months old where she has one inward-turning eye. We noticed it but thought it was transient. A couple of years ago, this became more pronounced and we took her to see an optometrist. She received a diagnosis of hyperopia and accommodative esotropia ou and he tried putting her in prismed glasses. The next year at her check up, her diagnosis included visual disturbance unspecified and paresis of accommodation. I remember him telling me that she had 18 extra degrees of rotation in the right eye and that he was putting her in bifocals to try to help hold the eye in place but that even that prescription could only correct 3 degrees. He recommended vision therapy when she was a bit older.

Yesterday we did the VT assessment. On the computer portion (RightEye), none of her eye tracking or focus movements were close to normal. Her overall score was 22, very low.

I was surprised by one auditory test the therapist did where she asked DD to remove a sound from a word, like say "play" without the p. I already knew that DD cannot do this for words that involve blends and certain sound groupings, but I was surprised the VT was assessing this. Can anyone shed light here?

Meanwhile, I have a good friend who used to be the IEP coordinator for our local district. She has multiple special ed credentials etc. She asked me in passing the other day when we were starting speech therapy. This caught me 100% off guard. I knew that DD's pronunciation wasn't all the way there yet but in no way considered her to have a speech delay. My friend also asked if we were starting OT and said she thinks she has fine motor deficits. This made more sense to me because of the visual perception issues. DD does struggle a great deal with things like handwriting and she is extremely frustrated by her inability to draw. Her drawing attempts do not look like other 6yos.

I am now trying to figure out what all is involved here and what assessments and therapies I need to seek. Money is a significant factor. VT is already going to cost much more than I had thought and we will be maxed out there. I am aware that I can get a speech assessment and therapy if needed through our school district. If I am able to get an IEP for that, there is a apparently a path to an OT assessment and treatment that would be covered by the district. But I'm now wondering if there are auditory processing issues as well, and I already know someone who couldn't get that tested through the district. Is seeking OT premature, do you think, when VT may really help visual perception?

Oh, I forgot one piece. DD is highly sensory seeking. From a very young age, she developed a behavior of self-soothing by rocking back and forth hard on the couch, in the car, in her high chair. She used to do it so hard that we used to put a pillow behind her, but we just let it be and she has done it less and less with time. She still does it now but rarely, only when stressed. She very frequently asks for petting or holding and likes to be held tightly. She likes to listen to music as much and as loud as possible. If the music is loud, she will almost always go sit down and rock/bounce to it.

Do these seem like separate things or do they make a whole? Her preschool teacher suggested she was on the spectrum and I disagreed. I thought it was more likely to be a SPD but didn't feel we needed a diagnosis at that time. She looks people in the eye and loves playing with other kids. She communicates very well. She hates playing or being alone.

Also, please talk to me about my educational choices. I am using LOE with her, cursive-based. I felt she would need something really incremental and highly multisensory. This has been going really well. The integrated speech exercises are perfect, and she is already writing things like "dad" fluently. I'm using RightStart for math and games. My thinking is that she's going to need very robust pictorial mental scaffolding because symbol interpretation and manipulation may always be a challenge. Each day I have her do midline work: drawing large sideways 8s, crossbody movements, etc. Each day she does art of various sorts to help with fine motor.

I welcome all your thoughts and input. Thank you for taking the time to read a long post!

[Crimson Wife]

Your district is required under the Child Find law to do a free comprehensive IEP assessment. That includes speech and OT plus I would push for a reading assessment because even though she's young, if she's struggling with phonemic awareness that is a "red flag" for dyslexia. Dyslexia can be diagnosed as young as age 4 and the sooner you start intervention, the easier it is to get caught up.

Auditory processing is done through an audiologist and your child has to be 7-8 (depending on the clinic).

[Storygirl]

If I were in your position, I think I would ask the former IEP coordinator for a meeting. Show her what you have written here, and tell her any other concerns, and ask her what she has observed. Pick her brain about the IEP evaluation process at your local school and ask her for tips about getting started. People here on the LC boards have been through the IEP process and can give advice, but an in-person friend may be an even better source of information for you.

You are likely to get a more thorough evaluation and better explanation of root issues if you go to a neuropsychologist or educational psychologist. However, it can be pricey and is not typically covered by insurance when learning issues are the main issue. However, sometimes they will cover evaluations if something such as autism is suspected, so that might be possible for you. You can check with your insurance. You can also call the offices of the psychologists and ask them how insurance and billing works.

There are often very long waits for those private evaluations (could be six months or more). One possibility is for you to get on the waiting list and, in the meantime, pursue the free evaluations that you should get through the schools. You can then either cancel the private appointment if you decide you've gotten the information you needed, or you can keep the appointment and take the school testing results with you. We were told by one NP that doing this would reduce their costs, because they would not rerun the tests the school had done.

You may want to think some more about the spectrum issue. It is known to look different in girls, and the things that you mention -- looking in eyes and interacting with other children -- are not part of the diagnostic criteria used for determining autism, although sensory is. You can google for the DSM5 criteria for an autism diagnosis and go down the list yourself to see the things that are considered. Preschool teachers see a lot of children and may be looking at some areas of development that you might not be thinking of. I wouldn't necessarily discount their opinion but might, instead, think it reason enough to add autism to the list of things to consider screening for.

[Storygirl]

One of the things you can ask your teacher friend is whether your school district will provide any services to students who are not enrolled. Some school districts will evaluate (because they are required to under federal law), but will not provide therapy to homeschooled children. And others will, so you need to ask.

We have found that private OT therapy will address many more issues than what the public school will provide. The school is only required to offer therapy that allows the child to perform in the classroom, and the benchmark for performance is low. Meaning, there has to be quite a deficit before they will offer help, and the help they will offer is minimal (maybe 20 minute once a week).

That is our experience. You may have a fabulous school district that is committed to providing OT, but I haven't really heard of one like that. They will not have many OTs on staff, and they are likely to be spending their time helping those with multiple disabilities or other severe physical issues.

Private OT and speech therapy may be covered under your insurance; ours was, though every policy is different.

Also, you should ask your friend what she noticed that made her bring up speech therapy. Because SLPs do more than just work on articulation. They also work on social and communication skills. If your friend has noticed social and/or communication issues, that is also an area in the autism diagnosis criteria.

I agree with Crimson Wife about the red flags for dyslexia. When DD13 (dyslexic) was that age, her inability to separate out sounds from one another made me think dyslexia but also auditory processing. There can be some similarity in those early symptoms. With auditory processing, though, I think you would be noticing things like not responding when people speak to her, because her brain doesn't register what they are saying, even though she should be able to hear it. And having trouble hearing when in environments with a lot of ambient noise. Even if you see those things, however, it can be a sign of inattention instead of auditory processing. It can be hard to tease that out. You can start to explore this by asking the school for a test of phonological processing (CTOPP), which can flag dyslexia, asking the doctor and school to screen for ADHD (the inattention piece, if you see that in her), and getting a hearing test done at the audiologist (if you see issues related to hearing instructions). One by one, you can check those areas.

Going to multiple specialists and having evaluations and gathering reports is pretty common when you have a child who presents with many different concerns. Going to a neuropsychologist is expensive, but they can do many of those screenings all at once, so sometimes in the end, it can be worth the cost.

I don't know anything about the vision therapy issues, but there are others on the boards who have done vision therapy, who will hopefully chime in.

[PeterPan]

4 hours ago, alicai said:

Do these seem like separate things or do they make a whole?

The way you answer this is genetic testing. There are other syndromes besides autism and there are a lot of genetic presentations that are autism-like in their presentation. In other words, not all developmental disabilities are called autism. Clearly something is going on. It really just depends on your insurance and whether they would fund it through a children's hospital (very full-coverage insurance where they would have reasons to suspect the need) or whether you'd do $99 testing and see if anything comes up. I'm not sure what would come up, but it's a way to think through how you get answers. Also a developmental pediatrician could be part of the discussion.

4 hours ago, alicai said:

He recommended vision therapy when she was a bit older.

I fail to understand why he waited so long. Is he a Fellow with COVD? This is a more complex case and I would make sure you have a Fellow with COVD. At our practice, they would have begun therapy with her immediately, as an infant. Seriously.

4 hours ago, alicai said:

From a very young age, she developed a behavior of self-soothing by rocking back and forth hard on the couch, in the car, in her high chair.

That's pretty significant. Yes, you should be getting full evals, and honestly they need to be for autism. You have significant developmental delays and every explanation needs to be put on the table. Remember, labels open doors to funding. Right now you have a 6 yo and minimal funding. Diagnoses could open up county funding, medicaid waivers, all kinds of things. You've got some pretty significant challenges going on here, and the 6 yo with these needs is not going to find those needs just poof, disappear. She's going to continue to have needs and they're going to get more challenging as demands increase. 

4 hours ago, alicai said:

I was surprised by one auditory test the therapist did where she asked DD to remove a sound from a word, like say "play" without the p. I already knew that DD cannot do this for words that involve blends and certain sound groupings, but I was surprised the VT was assessing this. Can anyone shed light here?

What she's doing are part of phonological processing testing. A VT office is going to see a lot of reading disorder, so they're screening, which is fine. Because she also has articulation issues, it would be appropriate for you to get a private SLP eval by someone who specializes in reading. This SLP could run the TILLS, narrative language screening, and some other tools a psych eval isn't likely to get done. If you cannot get private coverage, you can go through the ps, yes. Odds of you getting thorough evals? Nil. Your situation is too complex. As far as the dollars, see what your insurance will fund. Will they pay for a developmental ped? Will they pay for psych or OT or SLP? See what they'll pay for. Don't go to novices or a university.

Once you have the PRIVATE evals, anything you can make happen, then take that info to the school and advocate for their evals. If the school will provide services to homeschoolers, then sure take their OT and SLP absolutely. This child is going to eat up high quality interaction.

Things to watch for are

-retained reflexes--these will affect her progress with the VT. If the VT doc is not a Fellow and did not screen for them, I'd be cautious how you proceed there. VT docs are not all equally good and you can burn through your money really fast. I'm a huge fan of VT, but I'm saying be cautious, take your time, don't pay much ahead, space appts and ask for more homework, and watch for red flags. She almost assuredly has multiple reflexes retained, and if the doc didn't test for them I wouldn't even start VT till that work is done.

-speech therapy--You want articulation, yes, AND you want narrative language and syntax and the metalinguistics stuff (multiple meanings, etc.). She's likely to have pockets of trouble across quite a few areas. Do not underestimate the challenges subtle language issues will cause. Has she ever done any scripting or repeating (echolalia) of words/phrases/lines from movies or audiobooks?

-self-regulation--given her sensory symptoms and how hard she's having to work to keep her body calm, she probably has interoception issues. Not many OTs are trained on it yet. The best materials are through Kelly Mahler's site and you might be able to find an OT trained in it through her FB page. Or go to the training yourself! As demands increase, her need for self-regulation is going to come to the fore. This work will be LIFE-CHANGING and it will merge her language issues and her self-regulation to improve her self-advocacy. There are other things people do (Zones, How Does Your Motor Run, AIM, etc.), but the person trained in Mahler's stuff will have all those other tools too.

Keep asking questions! The most important thing you can do is interact with her (conversation, read alouds, games, learning to swim or intro to gymnastics, things with joint attention, GAMES GAMES GAMES). Your sense that she will need more repetition is probably spot-on. My ds has a bright IQ but he needs repetition. Don't feel pressured to "do" school. Just have these real interactions that meet her right where she is and keep doing them. Do together whatever she likes to do or what you think she could like to do. (crafting, coloring, kits from Timberdoodle) We LOVED the Djeco kits at that age. As you do these things and make evals happen, the answers will become more obvious.

[PeterPan]

Adding: She's not too young to go ahead do the Barton screening tool. It's NOT a dyslexia test but just screens to see if she has the utter basics to proceed with ANY reading program. So if you like LOE, fine. Just do the free screening to see what happens. https://bartonreading.com/students/

[alicai]

Thank you very much to all of you for your input. It is very helpful and I appreciate it. I met yesterday with my special ed friend and we came up with a plan for how to try to get Emery the most assessments as soon as possible. Our thinking was it's free, it's a starting point, and if anything comes up positive, I can then use it to get additional covered testing.

PeterPan, our VT doc is not a Fellow with COVD although he comes highly recommended to us by friends. I've already paid for the assessment and the second part of that is the meeting with him next week. So we'll go to that at least, but I really appreciate your advice on not pre-paying visits because I know that is something they do. I did find a Fellow somewhat farther away but they require weekly sessions and, without going back to work, I simply have no way to pay for that. So I'm not sure what to do there.

I am going to try to test for retained reflexes myself today and see if there is some work we can do on that. 

[PeterPan]

I would talk with that Fellow. Your situation is quite complicated, and some VT practices have a no child untreated policy. They may have a sliding scale or another way to help you. Some will do a break for coming in during the day. In reality, for a situation this complicated (not run of the mill), you do need weekly. I would at least try calling them. Or don't call, email. You can email them through the COVD site and it will be the eye doc herself probably. Literally just email her and say you're seeing another doc, got these diagnoses, have been monitored, had this suggested path of treatment (frequency, bifocals, etc.) but that you're uncertain of whether blah blah. Often a Fellow is going to find those hardest cases most interesting and want them, which again means they might try to help bring it within reach. 

Yes, see what you get with the reflex testing and report back. 

Yes, the ps testing process is a funny thing. Usually with private it's sorta like shut up and listen to the "god" and let the expert do his thing. With ps evals you want to do the opposite and be very vocal about what you want. You make a list and have symptoms, work samples, life stories, etc. that back up the need for each thing. (I would like to see narrative language testing because when I ask her to tell me about what I just read her or about her day she can tell me nothing and it's consistent across days and weeks, bah blah) They're *supposed* to go through a planning form and discuss every category with you, but sometimes they go through it really FAST. So slowing that down can having your reasons and things in your mind can be really good.

Well cool that you have a friend to help you! She's been on the other side. Reality is, when autism is being put on the table, there's a lot of evaling that should be done. Does your ps have an ADOS-trained team? It's becoming more common in our area and just depends on the school. It's something to find out, because an ADOS-trained team will just be a lot more informed about what they're seeing and recognize things better. Without that training they're just looking at the numbers and not as... well I would say confident, but don't worry they'll be confident even if they're wrong, lol. Almost our entire IEP team got tossed because they screwed us up so much. But really, I hope they get some info for you and are a good start! Keep us posted! :)