"Developmental delays are commas not period, your child can still get there"
For the past 3 years, Dario has done more than six times of immunological visit as a part of follow-up control of his 22q11.2 deletion syndrome. On average he had to do a blood test and a visit with an immunologist every 6 months. This year, his immunologist said, he needs a control and visits only once in a year.
Yesterday, we went to Padua (Padova) University hospital to do this immunological visit as a part of his DiGeorge Syndrome care management protocol. This visit, this time, is quite something because we had a lot to talk related to his developmental delays and the fact that one neuropsychiatrist stated that Dario seems to develop autistic behavior.
Autism or Autism Spectrum Disorder or Kids diagnosed with autistic behavior might be parents' worst nightmare, but to be honest, for me it's not that bad. Maybe I have been through a lot or maybe I expected the worst but Autism has never scared me in any way. For me Autism might indicate that one's brain works differently than the rest of us, nothing more but for some people especially in my home country Indonesia, Autism might mean 'retarded' some even associate that term with down syndrome or with any other syndrome they never heard of.
That's why when I talked to my mom about our neuropsychiatrist visit, she said "what? no way, Dario is not stupid!" oh well now I know how common people stigmatize Autism and how this leads to marginalization.
Back to Dario's story, I eagerly told the immunologist that this statement 'Dario might develop Autism in the future' had made me anxious, I just want the right or such definitive answer. I don't like the status quo, and this is important for me, to determine my next step.
"That's such a piece of wrong information, I don't see Dario exhibits any behavior that leads to it," she said
"People who don't know this syndrome, much prefer to label instead of admitting that they don't know anything related to this syndrome"
"This statement is as dumb as saying that someone might seem to develop rash or fever in the future which is, in reality, nobody could tell and it is as vague as it sounds," she said furiously
"Kids with DiGeorge Syndrome might have behavior manifestation that looks like autism but in fact, it is not. We can't put behavioral issues in the same place as Autism because they are bloody different. And for your child case, For God's sake, he has through a hell lot of time and he is still weak. He spent most of his time on the hospital bed, that's why he got some delays and I see that as a normal thing. He would surely catch up, slowly but surely and once he is feeling stronger, he'll be like other normal kids." she summed up
"But you should keep in mind, that you have to continue his therapies and give him as much stimulation as you can".
"Set goals, assess, and evaluate his improvements. If you don't see any improvements, change therapists". She concluded.
This conversation has opened up my mind a bit and I realized again that my son's rare disease could make a confusion even amongst medics.
"So, I don't have to worry anymore about ASD?" I continued
"Don't let people put you down and make you anxious, information bias can even come from the medics and your job is to consult it to the experts," she said
I came out from the clinic with a warm heart, I am so thankful that Dario has been followed by a DiGeorge syndrome expert and I could consult anything that bothers me.
From this visit we know as well that Dario immune system is getting better yet going to school is still too much for him, so postponing school till Spring is really a good idea.
After the visit, we took a stroll around Padova Centro and this time Dario could walk longer that he used to (Did I inform you that Dario performs better in winter than Summer because the heat exhausts him easily?)
Plus, he ate a lot, seems like the visit made him starve, He finished a bowl full of Udon Noodles with stir-fried meat and a half bowl of Jasmine Rice with Thai sweet curry. Ah, I am so grateful...
No comments
Post a Comment