All morning I reminded Sahara of the agenda of the morning that seemed to last forever… Relax, Get dressed, Brush teeth, OT, Speech, Lunch… If you don’t know much about autism, routine is important to many of these kids (and adults).
So it was a rough weekend… PMS and all!!
The firework show was a bust and stimming was at an all time high in our corner of the world. We didn’t make it to bed until 11:30 last night, then the new kitten woke the girls and me up at 5:00am!! It was bound to be a rough day.
The music therapist cancelled at the last minute… but, I understood… her hubby was home for the holiday and she wanted to spend the morning with him and her son. With the continued stimming and agitation this morning I am certain not much would have been accomplished anyways. So I was happy to reschedule for tomorrow morning.
So, when we pulled up to the Children’s Close to home and the parking lot seemed much too empty on a Monday morning… I got a little nervous. I told Sahara to wait. Being parked right in front of the main door I was able to quickly jump out of the jeep to check the front door. It was open… whew!!
I nodded at Sahara; she took off her seat belt as I grabbed my laptop and book (Eclipse) from the passenger front seat. Sahara must have have been anticipating OT as much as I… instead of running down the sidewalk she walked right into the building and sat down in the empty lobby. I said to the subbing receptionist, “Sahara is here to see [J] for OT, then [C] for Speech.”
I wasn’t prepared for the response, “Oh, they aren’t here today.”
“I am sorry, the lab and x-rays are only seeing people today,” she sheepishly replied.
“I specifically asked [C] and [J] 2 weeks ago if we had therapy today and they both said ‘yes’!!”
Avoiding all eye contact she said, “I am sorry you will have to talk to them about that.”
I expressed that I was upset because I not only asked one therapist, but two!! if we had therapy today and was told “yes” we did. I continued that I thought this was inappropriate for therapists who supposedly specialize in autism… certainly they should know the importance of routine for these kids on the spectrum. I didn’t get a response to that…
The lobby was eerily quiet… I approach Sahara and try my best to explain why we had to leave right away. The look in her eyes said it all… no comprehension!! Instantly I am pissed, “I expect more professionalism than this from Children’s Hospital!!,” I snap.
I know it was not this green receptionist’s fault… but I was so upset. My child was pulling away from my hand and running through the lobby clearly not comprehending why her mean mother was trying to force her to leave when we had just arrived here.
Maybe the sting was worse because we so desperately needed the platform swing today, maybe because I was looking forward to consulting with the SLP about creating a picture schedule for the summer or maybe, just maybe, because in the recess of my mind I remembered that last sting I got from the SLP.
She was explaining to me how she is going to work in the Down Syndrome Clinic, “You don’t know what it is like to work with autistic children all day… “
I must not have held a good poker face because she failed miserably at saving face, “I mean, you get to go home after your appointment, I have to stay here all day, day after day. Autistic kids are hard to work with”
Where did she think I went after our appointment???? I am just really annoyed with therapists, doctors and other so-called professionals who haven’t a clue what a parent of a child diagnosed with autism goes through. I can garuntee you that their degrees and experience have little comparison to the expertise us mothers and fathers on the front line have. How dare she imply that her JOB was more difficult.
I wasn’t surprised when I got home to find a voice mail from the SLP on my answering machine. However, she stated that she had arrived to work and was told to go home because it is a holiday; they won’t pay overtime. This doesn’t add up to me as I know that she works 12 hour shifts on Mondays, so if she had arrived to work it would have been at 7:00 am not 10:30… a half hour prior to our appointment and a half hour after I reamed the receptionist.
So much for my hubby’s relaxing day off with the family. After I vented, we have spent most of the day refereeing between the girls and consoling Sahara in her many many melt downs. In addition, Emily had a low grade fever and was grumpy; I was PMSing; and my dear hubby was ready to crawl under a rock.
Here’s to a better day tomorrow…
- When Our Autistic Kids Become Adults
- We think differently