DH and I were very disappointed in DD's evaluation and unfortunately didn't come up with a lot of questions until we left the evaluation and had time to digest everything. I was wondering if our experience was normal or if we should think about going elsewhere. Any insight would be welcome as we are completely new to all of this and have no one else to ask for advice.
We took DD for a SPD evaluation at a therapy place specializing in SPD, Autism and other disorders based on a referral from our family Dr. The therapist took us to a room and spent 20 minutes with my DH and I while DD played. She asked us very vague questions regarding DD's behavior and actions. As she was asking us questions I told her that I had completed a checklist that I had presented to our family Dr. which prompted the evaluation and that I brought the checklist along if she wanted to see it. She said no and that she had their own checklist for us to complete. I was fine with that. Then the therapist took DD to their gym room where she could swing, jump, roll and crash around while DH and I worked on the checklist. DD loved the gym room and spent about 15 minutes there. DH and I hadn't finished the checklist yet and the therapist said it was time to go back to to the room we started in. We spent 5-10 minutes there before leaving. We told her we didn't finish the checklist and she said that was fine and that we should take it home to finish it. The therapist told us that she felt our DD didn't really fit into any of their categories for diagnosis. However, she recommended therapy two days per week for 8 weeks but then she said that is what they usually recommend for everyone. As a diagnosis she listed "developmental delay".
As I said we really didn't think of any specific questions until we digested everything and were on our way home.
We want to help DD and help our family function in a much more peaceful way. But the therapist didn't seem convincing in her evaluation of DD and the therapy place is an hour away from our home and the cost is also a factor. The traveling and cost would not be a factor to us if they indicated that she really needed the therapy but that didn't come across at all. It seemed like they were appeasing us based on our family Dr.'s referral and our concerns which they can't seem to place in a category. The therapist said we would receive a written report at the first therapy session but she won't even have our completed checklist until then. She didn't go over our written goals and how the activities they intend to do will help achieve those goals. DH and I feel really disappointed in this process.
Thanks for reading this and your input!
I'd be really upfront with her -- "We're not willing to schedule a therapy session until we know what the diagnosis is. I'm disappointed that you're recommending therapy before even reviewing the checklists. I need to know the specific areas that you'll be working on and the specific areas of deficit that you see. It's a stretch for us to this both financially and time wise, and I can't justify it without a written report."
What's she's asking is unprofessional, IMO. When we had ds evaluated for SPD, we did the checklist, his preschool/daycare teacher(s) did one, we had the interview and she took him into the gym. She did recommend therapy right away, but she was able to explain clearly a couple of things that were clear indications of developmental delay (he couldn't put his hands out in front of him and then touch his nose, he didn't cross the midline, when she had him lie on his stomach on the floor and try to raise his hands/legs/head, he couldn't). She then mailed us a written report. I don't remember if that was before or after the first meeting, but she definitely would have been OK with us delaying therapy until we'd had the report. We needed a diagnosis for insurance to pay their part.
I agree with Lynn except you really don't want them to give a diagnosis of SPD because then your insurance will not have to (and probably won't) cover any therapy. SPD is not listed as a diagnosis in the DSM so insurance carriers do not have to pay for therapy. There are ways to get around it (many doctors seem to use the PDD-NOS diagnosis until the child is older and they can get a better handle on what is going on) but it sounds like they are more interested in pushing therapy than actually finding out what is going on with your child.
If I were you, I'd get on the waiting lists of every developmental pediatrician and/or neuro psychologist in the area and have her seen by a physician. Get a real diagnosis and understanding of what is going on with your child. Then worry about the therapy piece. It's important, don't get me wrong, but unless you are made of money (and if so... wanna be my best friend lol) you probably can't afford to throw money away on therapy that may not be appropriate for your child.
Though we did receive a really helpful evaluation from an OT once, it was only an intermediary step while we waited for a more comprehensive evaluation at the children's hospital clinic; there ds was evaluated by a developmental behavioral pediatrician, a speech-language pathologist, a psychologist, and a social worker.
You could do OT in the meantime but there may be other options; around here there are OTs and STs that travel to you, as well as the facilities with all that equipment.
I third what SpottedFox said. I don't have much time to reply but wanted to say quickly that I would highly, highly recommend that you go to a developmental pediatrician if you are concerned about your DD. Therapists are in no way qualified to diagnose your child and, while they can be an invaluable part of the team to work with your DD, they shouldn't be the one who determines the initial road map for what your specific child needs. Many, many things look like ASD or SPD and when there is any gray area, you would be best served by someone who can look at the big picture!
Thank you very much mamas! We are going to take your advice and get DD in to see a developmental pediatrician before we proceed with the occupational therapy. We really do appreciate the guidance!