No btdt but I would suggest going ahead and making the neuropsych appt. for the first available appointment. It might help unify some of the divergent differences you are seeing and give you a better picture of what is going on and how best to get him services either through the school district or private services or likely both. It's great that you have a highly recommended md to see! :hug:
Thanks everyone!
So I have a follow up question. We had the first IEP meeting today, def. getting speech services. DS's writing has actually improved somewhat from week 1 of school -- we are noticing this too. We are not sure though he is where he should be --we are psyched he is finally writing his name though!
Anyway at the meeting they were very insistent that the OT do an "observation" first and then follow that up if she thinks it is needed with an "evaluation" -- I assume the former is subjective. Is this reasonable? Or should I formally request (again) that they do an quantitative evaluation? They did not sound very inclined to give OT services or much in the way of OT services unless he was failing academically and at week three of kindy he is doing fine, did fine on the ISL entry screening. So I am not sure even if I insist on an evaluation I can get him services.
Opinions?
I would agree to the observation first. Usually they do that to figure out yes, there is definitely something going on that warrants a full evaluation. Another thing to consider is that they tend to be overwhelmed with requests at the beginning of the school year. See where the observation leads.... and give it some time. You can always request a full evaluation at a later time. Play nice to start with, defer to their expertise, and bring out the mama bear later if you need to.
Observation is normal. DS is going to have one for speech at his new school. Maybe ask if the observation includes a screening assessment. We have shorter assessments in speech and children whose results show they need a full evaluation are referred on for that. A full evaluation is very time consuming, so not the first option. A skilled OT should be able to see if warrants more investigation by an observation. And you can ask again later if not showing improvement..
I'll say that if he's showing improvement only a week or so into K, good chance they'll take a wait and see approach. A lot of K is getting kids to do what the expectations are eg. your DS can write his name if he just did it, but only now are they really expecting him to do it. My DS is a bit like that. His new teacher told the class expect them to read 20-30 mins a day. Over the summer, I had trouble getting him to read each day. Tonight he did 1 hour! For handwriting, DS hated handwriting, but did Hand Writing Without Tears all by himself. He loved the chalkboard and he could do it himself w/o help as the instructions are so clear.
op, no specific btdt, but a small suggestion. ds has a dvd series called 'meet the letters', 'meet the phonics', 'meet the sight words' that he loves and might help your ds with that part. when i read 'nurtureshock' i was pleasantly surprised that these dvds do what that book says is best practice for words, move them around while repeating repeating repeating. anyway, might help & can't hurt. :) (there's also dvds about meeting numbers, colors, and shapes, but we don't have those.) warning - the repeating makes adults want to tear their hair off & stuff it in their ears.
I want to let everyone know how much I appreciate you talking me through this! Karst, I am def. going to check out those dvds. And I will go forward with the observation.
The group did emphasize that they thought correcting DS's speech issues was critical to his later reading because he would not be able to sound out and match as well since he has so many missing/incorrect sounds. That sounded reasonable to me. On the QILS (??) screen he was normal on letter recognition, comprehension, and phonemic awareness but completely bombed the track the text as someone reads out loud and point to select words that previously flagged to him (10th percentile -- though they said many kindergartners do that poorly on this one though I don't understand how that makes sense if he is in the 10th percentile). Anyway, this has been my experience too -- DS does OK with individual letters but has a much harder time when they are in words and cannot make any headway if they are in sentences - - just on recognizing the same letters. What we were told it that this is often normal kindy development though it is possible it could also be a reading disability.
Well, hopefully his writing progress continues and kindy expectations/peer pressure work some magic. He told me he is worried about first grade because of his bad writing. I am going to order some handwriting w/out tears materials.
Thanks again!
I just wanted to throw out the idea of doing a private OT eval, regardless of what happens at school. I know school-based services are more convenient, and clearly an advantage in terms of cost, but IME school-based OT is not always very deep. Most of the time they are going to be concerned with very specific behaviors that are inherent at school - when in fact there are likely lots of other gross and fine motor skills that are not being addressed - and those affect learning too. We were to the point that our school-based OT proclaimed all goals had been met, and when the private OT eval came back, I just couldn't believe all the needs there were. I really wish someone had told me this sooner. Just throwing this out there in hopes that others don't have to go through all of that to get what is needed.
Thank you! We actually have a private OT evaluation next week. I am sort of dreading taking him to OT -- he has fully day kindy and is just exhausted after it. And I will need to take an afternoon off from work. But, I am grateful our insurance covers it and we have the option.
I have been down this road 3 times and am still on this road now. My oldest had an IEP when she was in school, my #3 has a 504 and my #4 has an IEP. I have fought for the evaluations and services my kids needed. When I wasn't happy with what services were being offered, I wrote a letter to request an IEP meeting to discuss concerns and what would be done to fix this.
I would write a formal letter and mail it certified return receipt and make a formal request for an OT evaluation and any other evaluation you'd like to happen now. If you put in the US mail, it kick starts a time frame and certain legal requirements where they have to contact you with in 10 days, meet with you, do the evaluation & complete the whole process with in 90 days. Making only phone calls and sending emails on the subject does not kick start this legal chain of events and offers them loop holes to get around doing what is really needed.
This is the time to put in all the requests. If you agree to them not doing any evaluations now, it's a process to go back and request evaluations in the future. I had to find a parent advocate to come with me to an IEP meeting after finding and speaking with a disabilities lawyer and had to fight for the additional evaluations after the fact. If they give you any trouble about doing any evaluations now, they will still be singing the same tune about giving you a hard time if you change your mind and want that eval next year. If any part of you thinks he may need an evaluation in any area, do it now. If the school denies any of the evaluations you request or you disagree with their evaluation results, you can file a due process grievance and the district is required to pay for an independent evaluation at a location of your choosing. So while you are always free to do what ever evaluations you'd like outside the district, if money is an issue, have the school either do the evaluation there or have them pay for it. Also to do the evaluations on your own outside the district and not go through the due process procedures, it opens the door for the school to ignore your evaluations, no matter how reputable of a facility you meet with. I found this out after I paid $350 for a learning evaluation & separate psychological eval that the district refused to recognize since I did it on my own dime.
Schools very, very commonly talk parents out of evaluations and services only to save the district money. My aunt is a doctor of special education and said she worked in districts (as in more than 1) where child study teams were told they could only approve a certain number of IEP's & 504's each year and any one beyond that had to be denied no matter what.
The Wrightslaw website has a ton of information but can be tricky to navigate. Most states have a parent advocacy group that you can contact to find out about your legal rights in this whole process, call the state department of education's special education department or a legal aid service in your state (some states have a legal aid office just for disability law). You have a lot of legal rights in all this but school love to act like they hold the all cards when really it's you.
Keep contact in writing, whether by postal mail or email since you can have proof of what was said then but you can't so much with a verbal conversation. If you end up running into someone and they start talking, then follow any conversations up with an email saying "I know we spoke earlier but I just wanted to send a note to review what we'd discussed today" so you have something in writing about what was discussed. You also have the right to record any meetings. It can be helpful when a lot of topics are touched on in a short amount of time.
Most of all, you've got this! It can be overwhelming but you can do this. My oldest is out of high school now but recently said to me that one of the things she learned from me was to stand up for yourself, be polite but don't take crap and don't be afraid to advocate for what you need. Made me realize that all the years of child study team issues not only got her the services she needed but taught her something important about life at the same time. Good luck!!
Thank you everyone for the advice! My district, while not particularly well-funded, really came through with the services. DS qualified for speech twice per week. They did end up doing the OT eval--he showed a lot of strength in the observation but the OT noticed a few things that gave her concern and went on to the quantitative assessment which did uncover areas where he was below-normal. So he will also be getting OT once per week -- he has some fine motor/writing issues and also what stood out is that he has some visual perception problems (e.g., matching lines and figures). I am embarrassed because I was very suspicious the district was going to try to skimp on services! They were very thorough, professional, and caring about DS.
Also, his problems in either area are not terribly severe so it seems likely that a year or two or services should resolve everything. On the possible dyslexia front, I am feeling much better - - DS had a complete explosion and learned all of his lower case and upper case letters except half a dozen and all of his letter-sounds except 5. He also scored really well on phonemic awareness, has been starting to sound out letters, and read (actually misread but it was close) a more advanced word that was in a documentary title on the tv screen a few weeks ago. So, that looks good so far, fingers crossed!
We set evaluable, quantifiable goals at the IEP meeting and the two therapists will do mini-assessments periodically to evaluate how he is progressing.
Thank you again for all of your help!!
ETA: We also did the private OT eval which came out very similarly on degree of delay. We are now fighting with our insurance company to cover private OT. The school based OT actually seemed very good and thorough so if we can't get the private OT paid for I think she will be fine for this year at least. She doesn't do "core" work and that sort of thing, it is more classroom based visual perception, writing, etc. But she gave us suggestions for core exercises we could do at home.