After we've had a couple of days to heal from our illnesses and wounds (I finally found time to head to the doctor myself today-sinusitis/bronchitis), I've had time to really absorb and ponder the events from Wednesday. Particularly, the evaluation of the boys itself. Many of you have expressed your concerns, offered your prayers, and I thank you for everything. I hope you continue to pray as we navigate through this maze we find ourselves in. However, I am taking the diagnosis of "autism spectrum disorder" with a grain of salt. Here's why:
Evaluation morning we wake up the boys a couple hours earlier than normal to head into downtown Atlanta. Not knowing what kind of traffic nightmares we'll encounter in morning rush-hour traffic, we allow ourselves plenty of time. We arrive at the facility. We enter into the waiting room of the CHILDREN'S autism clinic and there is ONE toy. A toy that is too tall for my children to even play with. Now, they are 90th percentile in height for their age, so we're not talking midgets here. Who they exactly thought would play with this toy, I have NO idea. They come to take us to our evaluation room which I am praying to be better. I'm picturing Gymboree, but maybe on a smaller scale. Dream on, sister! What we got was an old semi-private patient room complete with 8 outlets in the wall without outlet covers, barren walls, the infamous examination cot (see previous post about Brett), a stand-up mirror, and nothing else. No bright colors, no toys, nothing! Can you say "institutional?" What I am now wondering is, aren't these people supposed to evaluate my children playing? My boys had to occupy themselves in this room for 2 1/2 hours. They had a couple of books and the toy car that I dug out from the bottom of our diaper bag. I would have packed more toys had I not expected them to actually be equipped to do a proper evaluation. Our evaluation began 30 minutes late. We were probably there an hour and a half before we even laid eyes on the Dr. who didn't even introduce himself and never one time could remember our names. Now, I did truly love the nurse practitioner and the speech therapist. They were sweet women. But, never one time did anyone ever get on the floor and try to engage the boys. What were they supposed to watch them do? Be two active boys bored to tears in a room with nothing to do? Try to electrocute themselves in the above mentioned unprotected electrical outlets? That's exactly what they got along with me trying to keep them occupied with their snacks and sippy cups. I'm sorry, but I think in that environment any toddler would demonstrate some autistic like qualities. I almost demonstrated some autistic characteristics in that dungeon!
So, that's how we got our autism diagnosis. Now you know why I take it with a grain of salt. Oh, and the dr., he popped in and out. I'd say we maybe talked to him 3-4 minutes total. And he wasn't the one who dropped the bomb on us. He left that to his nurse practioner. But he did come in before we left and asked us if everyone explained everything well enough. Well, no they didn't, but I wanted to get out of that place before I went crazy. And so we left, as confused as ever and with an injury to Brett we could have really done without.
4 comments:
That is absolutely horrible. Seriously. Talk about not trying to observe them in a natural environment. What the heck was even the point? Will you go for a second opinion or just wait and see how they progress with their therapists? Does your insurance require you to have a "Diagnosis?" I think your own personal doctor and the therapists that will be seeing them every week will be much more able to tell you if they think autism is a concern. We are still praying it won't be and the boys will thrive in their therapy.
Unbelievable. I would be so mad.
What a rotten experience! Does their "diagnosis" actually get recorded anywhere that it will be attached to their medical records? That wouldn't sit well with me.
I bet therapy makes a world of difference. Much love to you and your beautiful babies!
Thanks G!! They are beautiful, and I do think that this stays in their medical record. That makes me mad considering it was terrible excuse for an evaluation anyways. I am going to their regular pediatrician tomorrow (LOVE HER!) to pick up their prescriptions for speech and occupational therapy. I intend on letting her know how horrible our experience was at this place so she can stop referring people there. I already talked to another facility who does these evals and I can tell just by talking to them on the phone that it's a whole different world at this new place-for the better!
Does your state or city offer public preschool? If they do, you can inquire them about doing an evaluation. Ask your therapists to ask their other parents who they saw or who they recommend for a developmental pediatrician. Do a yahoo search for a support group in your area or ask your chapter of Autism Society. I'm sure they will have some names and numbers for you.
I'm sorry you had to go through all that. No child can be completely evaluated in that environment.
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