Not really happy with our SPD evaluation-update post 5

[proudmamanow]

We had an OT evaluate our daughter for SPD 2 weeks ago & I'm not really thrilled with how it went-just wanted to get a sense from other parents who have btdt if we should expect more.

So after talking to a couple of OT friends and reading a lot on MDC and elsewhere, we had decided to seek an OT evaluation for our 5 yo dd. I called one of the OTs recommended & she had a fairly quick turnaround time & was able to do the evaluation & then offer services through her private practice.
When I spoke with her on the phone, she asked that I bring dd to the hospital where she works and that she would give her some activities to do & observe her while at the sametime she administered a questionnaire to me.
This seemed a bit strange to me--I asked her if she found it difficult to talk to the parents while at the same time evaluating the child, especially since the child would be there listening. She reassured me that she had, quote, 'done this hundreds of times' and that it worked fine.

The day of the evaluation, she met us at reception, she seemed warm & friendly with dd, led us to her office. She had a desk set up with a bag of small toys for dd to play with (fiddly toys, bubbles, stickers etc). She & I sat at a table and she took out the Caregiver Sensory Profile and started to read the questions to me. Dd was listening avidly and providing some answers and I immediately felt very uncomfortable. I hadn't had a chance to discuss with her any of my concerns or any of the particular behaviours that had led us to consider SPD. And I didn't feel comfortable answering many of the questions out loud with dd listening--it felt very disrespectful to dd and potentially hurtful, especially when discussing her fears & behaviours. I wrote most of the answers down on paper she provided and followed up with an email regarding my concerns and some items I had forgotten to mention. DP also followed up, as she was unable to attend.

She replied politely & sent us her evaluation, based on some brief observations of dd and my caregiver questionnaire. She identified that she had some auditory & tactile sensitivity (no surprise there) that would benefit from OT. The evaluation is okay, but I'm really left feeling somewhat nonplussed. Shouldn't she have evaluated dd herself more thoroughly? Is it usual practice to complete the Caregiver Profile this way? One of my OT friends said she thought a Profile should have been on dd first, and then supplemented by asking us questions at a later date.
We are going to meet with this woman to get her formal report & recommendations & to discuss it with her, but I'm really thinking we need to call some other names & organizations on our list to get a 2nd opinion...

Any thoughts? What did your SPD evaluation look like?

[SpottedFoxx]

Some behaviors are really obvious with SPD but many are not as obvious to a casual observer. I got the impression from our developmental pediatrician (who was the one to diagnose SPD) that she based a good portion of the diagnosis on both ours and DS's teachers' observations.

I'm also not sure (and anyone who knows for sure, please correct me if I'm wrong) but I don't think OT's are necessarily the ones to diagnose SPD. I thought it was either the pediatrician, neuro, psych or dev.ped.

If you didn't like the way the exam was administered, I'd seek a second opinion.

[Emmeline II]

My OT came to the house; we sat on the couch and she started by asking me a couple of questions but ds (being evaluated) almost immediately came up to her to show her things. Our initial discussion was basically a review of what we had discussed on the phone. She talked to ds and asked him questions as he played with dd or drew in her notebook. There were a couple of things she thought would be better discussed without ds around. It took about 1.5 hours.

She will send me her evaluation in a couple of weeks then we'll have the follow-up discussion.

From reading on this board, I see that the ones that have a "this is old hat" attitude are not the ones people stay with.

[LynnS6]

It doesn't sound like it was a thorough enough evaluation. I'd seek another.

In comparison. Our ds' evaluation consisted of:

1. Detailed forms filled out ahead of time by dh, me and ds' preschools teachers.

2. A 1 to 1 1/2 observation of ds for both fine motor and large motor stuff. She did it in the OT center where the therapy. There were a number of standardized measures that she used:

The Short Sensory Profile
The Beery Buktenica Developmental Test of Visual-Motor Integration
subtests of the Bruiniks-Oseretsky Test of Motor Proficiency
subtests of the Peabody Developmental Motor Scales (2nd edition)
subtests of the SCAN-C (auditory processing test)
Clinical Observations of Motor and Postural Skills


3. A long, written report where she explained in detail where ds had difficult and where he was OK, and how he scored on the measures she administrated. (It was 5 pages, including about a page of recommendations and goals for OT.)

Ds scored within normal limits on Visual perception, visual coordination, visual motor integration, visual motor control, and the SCAN-C. He was significantly below average in grasping, bilateral coordination, and the Clinical Observations of Motor and Postural Skills. On the short sensory profile, he scored 'definite' difference in tactile sensitivity, auditory filtering, visual/auditory sensitivity, and movement sensitivity.

[proudmamanow]

we had our follow up appointment today. She presented us the report which identified auditory & tactile sensory issues, and recommended an at-home sensory diet for us to follow. She did not identify any motor issues or emotional/behaviour issues.

We are both pretty unsatisfied though, because she appears to have a very narrow take on SPD...based on the reading we have done it can very often have spillover effects into behaviour, emotional regulation, anxiety, all issues that we are dealing with. She seem to take the approach that all we needed to do was implement some sensory diet measures and otherwise adapt whatever works to fit her quirks.

Meanwhile dd has been insisting on wearing her size 7 footie fleece pajamas during a heatwave (we have no AC). We dropped her off for a playdate today wearing winter gloves--in July!

What I am looking for is help. Help to get her to be more flexible to trying new things, not react as strongly to auditory and tactile triggers, help in articulating how she is feeling. I also really want to understand: what is learned behaviour and what is sensory? What do we need to accommodate ? Where should we push her?

She also suggested we look into behaviour modification techniques for dd, and while I can see that the routine/structure might help her, this really goes against the GD, explaining, respectful approach to discipline we currently employ. But I am willing to try anything if it would help her, I just need more info & guidance.

To be fair, she also explained that usually she would be one small part of a psychoeducational assessment completed by a child psych, a step we have not taken but are now considering. But it would have been helpful if she'd mentioned this before we spent $350+ on seeing her. sigh. She did recommend a psych.

So far we are feeling discouraged--we saw a psych in May who recommended we seek out an OT for an SPD evaluation and treatment. And now the OT is recommending we go back to the psych. I really want some help!

[SpottedFoxx]

Well, for one thing, you finally confirmed my suspicions about my son (and proved to my Dh that I'm not crazy... well, not about this anyway) that his demands to wear gloves is a sensory issue.

Kids are quirky - it's their nature. Whether it's wearing a tutu to the supermarket, gloves or a winter coat in summer, sensory issues or not - kids are just strange creatures. Parents, well, I think we're even stranger. We get so wrapped up in these things that our kids do and we don't see the fact that (a) it makes our kids feel safe and secure and (b) it's not hurting anyone.

I have found, for myself, my husband and my son, trying to stop SPD related behavior is like trying to stop the sun from rising. It's impossible. You can, however, find alternatives. In the summer, DS trades in his winter gloves for gardening gloves. In fact, at my nephew's birthday party, my brother got his panties in a bunch because my son had on his gardening gloves. "Why is he wearing that?" he demanded. I ignored him the first few times and then finally I said "you never know where you'll find a weed". He looked at me like I had twelves heads and pointed out that we were in a restaurant. I just smiled and said "Jay, your nephew knows you have questionable tastes in restaurants" and walked away. He hasn't bugged me since.

DS has been mouthing things lately so instead of him chewing on people's fingers and object that could become a choking hazard, I got him a teething necklace. To the rest of the world, it just looks like a neat necklace. For DS, it's something safe for him to mouth.

Your local school district is able to provide you with the professionals you need to have your daughter evaluated (at no cost to you). I'd get them involved.

[marge234]

I'm so sorry you're getting jerked around in trying to find help for your DD.

Originally Posted by proudmamanow

When I spoke with her on the phone, she asked that I bring dd to the hospital where she works and that she would give her some activities to do & observe her while at the sametime she administered a questionnaire to me. ....

She & I sat at a table and she took out the Caregiver Sensory Profile and started to read the questions to me. Dd was listening avidly and providing some answers and I immediately felt very uncomfortable. I hadn't had a chance to discuss with her any of my concerns or any of the particular behaviours that had led us to consider SPD. And I didn't feel comfortable answering many of the questions out loud with dd listening--it felt very disrespectful to dd and potentially hurtful, especially when discussing her fears & behaviours.

I think you're right on that this is not respectful of your DD and on this basis alone I would be concerned that she isn't thorough.

The people helping my son--including an excellent OT--are thoughtful about what they say in front of him and he's not even 2. YOur DD's issues aren't a secret but you're trying to figure things out. If the provider thinks it's important to be candid with children your daughter's age she should have discussed with you how best to prepare her for the eval in advance. DD's not a potted plant for god's sake.

The behavior management talk--and lack of attention to how these sensory issues have affected how your daughter feels about herself, created anxiety, etc...--is also a big red flag. You're not trying to get your daughter to stop wearing gloves because it makes you uncomfortable. You want to see if you can help her address whatever it is that is going on with her that makes her want to wear gloves in July!

Kids can start deciding things like "i hate birthday parties" "i hate the beach" and begin "I can't do x so I'll act as if I don't want to do x" pretty early. Their sensory issues make certain experiences painful and to cope they can create beliefs about themselves--limiting beliefs. I'm not saying anything you don't already know. My point is just that the OT needs to be sensitive to the whole child.

It's great this OT knows her limits and is referring to a psych. But her behavior with the questionnaire was, to put it mildly, insensitive. She didn't know your DD, had no idea how having that conversation in front of her would make her feel.

Given DD's age, your desire to help her gently, address anxiety, etc... FWIW, I think consulting a clinical psychologist with a lot of experience helping kids with sensory issues makes sense. But it can be tough to find a good one. I certainly wouldn't be inclined to see one to whom this OT would refer.

This site helped us find excellent providers. The psychologist we saw did not charge us for the first visit.

http://www.icdl.com/usprograms/clinicians/index.shtmll

[proudmamanow]

thanks so much, marge234. This really supports how dp & I have been feeling about our whole experience with this woman. Dd is perceptive & sensitive, and this was not an appropriate evaluation.
We've both done a lot of reading on SPD (Out-of-Sync child, Sensational Kids, Raising a Sensory Smart Child etc.) plus a lot of online reading and everything seems to support what you are saying, that it is worth trying to develop a concrete plan to address these issues because this problem touches so much more than the specific behaviours, it can impact self-esteem, emotional security etc. And I also agree that I don't really feel like taking her recommendation based on our experience to date. It is just so hard to find someone. There's a local private agency that was also recommended that I think I will call next, at very least to find out more about what they offer in terms of evaluation.

At this point, we're not really sure how helpful a psychoeducational assessment would be, as we are homeschooling for the time being. But it may be a Canada/US thing...it seems like psychoed evaluations are more common here, and it is harder to get neuropsych evaluations. Sigh. Off to do more research.

[proudmamanow]

marge234--thanks so much for the link--I just looked at the Canadian list and there are a couple of people in our community including one that we had recommended to us by someone else. I feel more hopeful already!