UPDATE: DD's ADD/ADHD (etc) Evaluation and Parent Meeting

[lizzywednesday]

This is a quick update to let you folks know (because I'd posted last year when DD was struggling with meeting expectations last year in Kindy) what's going on with her.

After she was sent home from school for biting a substitute teacher last October, we called her pediatrician. We received Vanderbilt surveys for her Kindy teachers to fill out (and we filled some out ourselves) which led to the pediatrician recommending we take DD to a psychologist.

I called the psychologist's office, where I was told I'd get a follow up call. OK, so ... no follow up call. I phoned again, near the holidays, and was told to email the psychologist. I did. She didn't return my email.

Then we had more meetings with her teacher. And the principal. And the vice principal. And we were told how inappropriate to her age DD was acting, and what the school was doing to manage it. (Pretty much treating it as a discipline problem, rather than recommending a full child-study team evaluation, which I think was the wrong call.)

Then they actually evaluated for speech services (for which I'd been pushing since JUNE of 2015) and started her in speech therapy (pull-out) in January 2016.

I continued to sporadically call other places for private evaluations; as they are all swamped, nobody was calling me back. NOBODY. Which is infuriating.

In March, after hearing ZERO concerns since parent-teacher conferences in November, we had another meeting with the principal and DD's teacher expressing more concerns. After this meeting, I called yet another place and managed to speak to a real person. They sent more forms for us to fill out. We gave the teacher forms to her teacher, filled out our portion, and sent everything back.

Followed up to see where we were in the queue in April; were told we'd have someone call us in May. Nobody called us.

Called back in May. They'd changed their phone system. Tried to leave a voicemail. This is now impossible, because the time for recording cuts off in less than 3 seconds. Figured voicemail box was full. Tried again. Still not working. Repeat for the next two months.

Taking us to ... June.

Finally get so exasperated with phone system that I send an appointment request through their website. This gets routed to the intake people, who request my address so they can send us the forms they'd sent in March. I respond that my daughter should be in the queue, I was trying to check her status, but could not leave a voicemail (full mailbox?), could not reach a real person, could SOMEONE call me back because I wanted to confirm I hadn't misunderstood the last person I'd spoken with about her appointment status.

Real person calls me back, I explain the situation, and what I need, nearly in tears. I also complain about the phone system. I'm informed that the department is short-handed due to one doc being out on leave, and system changeover. I express empathy, but insist on booking an appointment, earliest available, because my child needs help and I'm exhausted.

Obtain appointment for 28 October; this is fine. Receive follow-up paperwork, as she is now in 1st grade with new teachers (who have new thoughts on what her behavior looks like, of course!), in mid-September. Immediately send paperwork to new teachers with explanatory note; they promise to have it filled out and sent to evaluators with plenty of time to add to DD's (growing) file.

Took DD to appointment this past Friday. She was cooperative and cheerful through the whole thing and didn't do her usual "attach myself to Mommy because I don't want to work" routine. I answered the intake interview questions truthfully, to the best of my ability, and totally forgot what answers we'd given, so I now wonder if I've been flagged as inconsistent. (We should've photocopied them!)

DH and I have our (parents-only) follow-up meeting tomorrow. Hoping we get answers enough to reach out to the school for a new plan for the remainder of 1st grade. She's been doing OK, but still has a day or two a week where she struggles to pay attention or follow classroom rules. (This is probably normal for 6yrs old, but if it's not, I'd like to have solutions in place that her teachers and I can use to help keep DD on task.)

Send good thoughts. At this point, the actual diagnosis isn't as important to me as the answers and a plan for treatment. If that can be complemented by services at school, I'm all for that too. DH doesn't want DD to be "labeled," which is fine, but at the same time, I will need to know how to advocate for her (should she need it; and I think she does) and if that means using a "label," I'll freakin' do it.

[georgiegirl]

How incredibly frustrating!!! I hope you finally get some answers and a good plan for treatment. I understand what you are going through somewhat because I've been trying to figure out DS1 for years...waiting for appointments and referrals and getting nowhere.

Good luck tomorrow!


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[cuca_]

How frustrating that you had such trouble getting an appointment. Good luck tomorrow. I hope you get some answers and a plan to help DD. I wouldn't worry about being inconsistent in your answers. Behaviors change and I am sure the psychologist is used to that.

Whatever answers you receive, make sure the psychologists included suggestions for classroom modifications/accommodations in the report. You might want to use for a 504 or IEP, depending on the outcome.

I also wouldn't worry about labeling DD. Labels are not uncommon nowadays, and only help in ensuring a child's academic success.

[lizzywednesday]

DH and I met yesterday with the team who evaluated DD.

The diagnosis at this time is ADHD, with a possible learning disability. The caveat about the LD is that they felt didn't have enough evidence to tease out whether her reluctance to read or do any cognitive heavy-lifting might be related to a true deficit or if it's simply because her ADHD is impacting her ability to focus and so it's presenting like a learning disability.

Their recommendations are as follow:

(1) Get DH and I into what they called "parent training" where we work with a therapist who can help us figure out how to parent to serve DD's needs best. I'm especially interested in this because I find the kind of parent I am doesn't always serve DD well.

(2) Reach out to her cardiologist to discuss the impact of adding medication to the parent therapies on her heart function, considering the fact that ADHD medications are stimulants, and what the course of medication therapy might look like for her.

(3) Reach out to her school to add the ADHD and "other learning issue" to her IEP so she is supported in the classroom.

DH made the comment that the lead psychologist "liked the sound of his own voice." He felt that the meeting taking 1.5 hours wasn't necessary.

My take was that we'd come there to LISTEN and LEARN. Just because one of us has an ADHD diagnosis doesn't mean we both do (though I wouldn't be surprised if I got an ADHD diagnosis myself) and we weren't there to get the diagnosis and bounce. We were there to discuss DD, her results, and our next steps to ensure she's going to have the supports for her success in place for the remainder of the year.

So, my next step is to learn as much as I can about ADHD because I don't know a lot about it, and how to start implementing some parenting strategies so I can reduce my frustration and tendency to YELL when DD isn't able to move on my schedule.

I feel more confident about being able to adjust to our new normal now than I did before the whole saga started last year.

[hillview]

great update!

[KpbS]

Hugs, Liz! Glad things are finally moving in a positive direction and I hope your DD can have continued success at school.

[lizzywednesday]

Thanks everybody.

As this past week was Book Fair, and that's my big volunteer stint at DD's school, I haven't called the recommended psychologist yet, so I will do that next week.

Or, rather, I will check our insurance and then call the psychologist.

[petesgirl]

I'm curious if the psychologist had anything to say about your DD's speech and how her speech therapy went last year. Is she still doing therapy for that? And has it seemed to help anything?

[lizzywednesday]

I'm curious if the psychologist had anything to say about your DD's speech and how her speech therapy went last year. Is she still doing therapy for that? And has it seemed to help anything?

So, what he said was that, in his experience, children with ADHD often have speech-language issues, especially in phonemic awareness. They noted this during her evaluation last week, and encouraged us to keep up with the therapy. We have currently exhausted this year's benefit w/r/t private therapy through insurance.

What I have noticed since she began speech therapy is her ability to sound out words (phonics) has improved because she's better able to match the letter with the phonetic sound it corresponds to, so I think it's helping, though we have to set time aside to do the practice homework. It's pretty easy for me to get what the speech teacher intends for the week's practice because a lot of it dovetails with my choral training, but it's often a pain in the backside to get DD to cooperate. (I've actually been using a few songs from Hamilton to complement the speech homework. I know that sounds weird, and mildly inappropriate due to some of the language, but the fact is she can't keep up with her favorite lyrics if she's not positioning her lips, tongue, and teeth correctly, so it seems to work. Unorthodox, but I'll do whatever it takes.)

[niccig]

Now you have a diagnosis, get the full report and take it back to the school with a letter in writing requesting a full psych-educational evaluation at school. You want the school psychologist and the resource room teacher (special ed. teacher that pulls students out for academic work in small group) to test her. Your school district may call the resource room teacher something else. Every state and school district is different, but where I work, if a parent brings outside report with a diagnosis and a request for evaluation in writing, we have 15 days to respond to say if will evaluate or if not, why we won't. In most cases we do go ahead and evaluate. The psych looks for possible special education eligibility like Other Health Impairment (includes ADHD), Autism, Specific Learning Disorder (processing difficulties like visual or auditory). The resource room teacher is testing academic abilities in reading, writing, math. The way it works here is, if the psych finds eligibility and the resource teacher finds low in academics, the team recommends the child get pulled out for resource room time to work on reading, writing, math. And you can have written into the IEP modifications for the teacher that help with her ADHD - more time on tests, repeat instructions etc , and a behavior support plan to deal with behaviors. If she doesn't qualify for academic help as not below average academically, you can do a 504 plan which includes modifications and behavior support plan. Speech therapy only won't help with ADHD, so you want the school to look at other supports she may need.

Keep persevering, you're getting her the support she needs.