Day 2
We reached the place by 8:30 am.
Since we did the registration yesterday, we just need to show the file and say, we have come for pending assessment. For which they collected 30 Rs. and then provided us with the wrist tags.
We went to the organizing lady, who asked us to visit the Psychologist. The issue with this is that, Psychology assessment is done at a different building i.e. G Block. The difficulty began at that point, my son does not do well with transitions in shorter period of time. After reaching G Block, we need to go to 2nd Floor and go to Room no 23 to meet Sandhya / Senta / Lalitha. After giving the file to them, we were asked to wait. The waiting place for the psychology department is a veranda with no fan, no ac, no ventilation. The longer you wait, the more irritated you get, be it an adult or a child.
After a longer waiting time, we were called upon inside to collect the case history. It’s again all the same questions which we were asked yesterday was again asked today as well. After that we were asked to wait outside. After few waiting, we were called inside for assessment, again one parent is allowed along with the child. My son did not co-operate at all with the person taking the assessment. My wife went inside along with my son and I waited outside, after 20 mins she came outside along with my son for a break, as he was not co-operating. After a break, he was called again inside for the assessment, for 10 mins they tried but still he did not co-operate, as a result they re-scheduled the assessment for a different date. The person who took the assessment is the junior/ student/trainee… who did not know how to handle the kids (leave aside kids on the spectrum), and put them at ease. She was not equipped to create confidence and trust with the child at all … unlike speech assessment where the student trainees connected well with my son before the assessment.
We totally lost confidence and interest in the assessment at this point of time, however we agreed for another date as we had pending speech assessment to be done as well.
We went to the Organizing lady to find out where we need to go next, she mentioned to visit Ophthalmology … But I insisted to have Occupational therapy assessment done first, and keep ophthalmology last, because for eye test they would give eye drops multiple times for pupils to be dilated. After which his vision would be blurred, we cannot take any further assessments for the day after that. The organizing lady mentioned that ophthalmology department would be there only 12.30 pm, you will have to come another day for this. (This was a blunt lie, which we came to know on our third and final day) She asked me to wait outside, after 30 mins she came and told that OT person will be available at 01.00 pm, this place is on the ground floor of the Udayar Block opposite to Emergency.
OCCUPATIONAL THERAPY TEST
We had an early lunch, due to heavy crowd and line we experienced on day 1. We went to OT department and gave the file like we do in all the departments. The guy at the reception told the person who is supposed to take OT test (Loganathan) is on leave today, we have to come another day. I told him to check with KCDU as they have sent us here after checking. The Reception guy called the KDCU, now the KCDU lady is irritated because we went to the OT department much earlier i.e. 12.15 pm itself. (She was already irritated because i wanted OT test instead of ophthalmology test). We began our waiting, finally Loganathan came around 1 pm for the assessment.
We were taken to a room, and same questions asked by different people earlier was asked, and he had a standard form which has categories of Tactile, Vestibular, Proprioceptive etc. The worst part about the OT assessment is that, my kid was not involved in it, he did not observe/inspect the child, and it was more of a Q & A session with him and us i.e.parents.
Suddenly he decided to perform one test for our child, he offered his pen to my son and asked him to pull it, my son tried pulling it, but was unsuccessful. This was the OT assessment done, also there is no report given by OT department. Whatever we have told him, he wrote on the standard form and signed it, put it in our file. That is all, a pointless exercise in my view. I was expecting a report containing activities that should be performed for the child to overcome the sensory issues which we have expressed to him.
We went to the organizing lady with the file, she told to come on next day for Ophthalmology test. I told her we have pending assessment for the speech and psychology to be done the day after, so we will perform this ophthalmology test along that day. She told, in a discouraging way that you may not be able to complete all pending assessments on that day. We ignored her concerns and left for home.
Day (Day2) came to an end …
Day 3
We lost interest in day 2 of the assessment process, today we are just giving it another shot to see if it is any worthwhile before calling it off. We reached SRMC at 8:30 am, reached the speech department for pending assessment to be done. We reported before 9 am, however most of the people come in at 9 am and above. We were called upon by the two students who took the assessment earlier for my son, so we went in. They began the assessment which lasted for 30-45 minutes. But I did not see any senior madam being in place, if these two students are performing the assessment today, why couldn’t they just finish off the test on day 1 itself ….I just could not understand the logic! After the assessment got completed, the students told that report will be prepared shortly you can collect it after some time.
Since we had a psychology assessment pending from day 2, we proceeded there and thought of collecting the speech report afterwards. We reached Psychology assessment before the slot given to us i.e. 10:30 am …we were called upon later, my wife went with my son for the assessment, it took close to an hour for them to return and found that it was for a break. After the break, the assessment again continued for 30 minutes or less, but my son did not co-operate as he just did not like the place/people from his day 1 visit. Infact they continued the assessment for 1 hour because today during the assessment there was a senior person present, hence the student trainees was made to work and did not avail the shortcut of rescheduling appointments. Then came the shocker, we were asked to bring our child another day for the pending assessment.
I had enough of it and decide it’s time to speak up. Went to the psychology department and made it clear, we are not bringing our kid another day for the assessment, even if we brought for another day we are sure that the assessment is not doing to get complete. Suggested them to provide the report based on whatever assessment they have done. They said around 70% of the assessment is complete, we have to complete the remaining in order to provide the IQ score, else we will be able to provide only CARS score. They asked us to wait outside, so they could discuss internally. During the time, the situation was communicated to the KCDU, we were asked meet the Organizing lady in Udayar block, which made it clear they are not going to issue any report.
We went to the Organizing lady and gave the file, she asked us to wait outside, after few minutes we were called inside. Dr.UdayaKumar his assistant, the organizing lady were all there in the room, asking us about the issues with Psychology. I told my concerns about the humid conditions on the waiting area outside psychology department, and the psychologist did not connect well with my son on day 1 the environment became hostile for him, hence he won’t co-operate.. Even if we bring him another day, assessment will not get completed. I gave them the option of taking a longer break where I can put my kid to sleep and try again to complete the pending area, which to me is a very logical decision that can be taken and mutually beneficial, but in SRMC from what I have seen people don’t attend to patients beyond lunch time.
Now to speak the above, it took a lot of time as when Udayakumar begins to speak he does not stop and he does not listen to what others are telling. At one point, he is out of answers and began speaking out of context, he mentioned:
1) You cannot get such assessment done anywhere at 750 Rs. Management has decided this lower price. (Is he telling that since they charge low, we will not get a better treatment and assessment? If they charged more, we would be given a royal treatment and detailed assessment? If that is so, do we have an option to choose between a below average and above average services?)
2) If you go to CMC Vellore, they will admit you to 3-4 days, here we don’t do that. (You are not doing that because i am a local, i can come next day at the time requested. Also you (KCDU) does not work 24X7, they work from 9 am to 2:30 pm, after that you don’t see any patients in the waiting area. Its like a government office, no work gets done after lunch time. Also if you admit, the cost of the assessment will be hiked up considerably for the bed charges)
3) You should consider the betterment for your child (I came voluntarily for the assessment not because i am bored at home, it is for betterment for my child.)
4) There are infrastructural challenges. Air conditioner in Psychology department was not working for a week or so. Etc. (How long do you wait to fix an AC if it stopped working? Who is responsible to ensure that it is working – MY appointment should not get impacted by such menial issues.)
Since the doctors have never lived a day as parents of special child, they just don’t know how much planning and energy is required for a travel day, it is mentally and physically exhausting and overwhelming for the parents. The routines, sleeping, eating intervals, bathroom breaks goes for a toss. This is one of the reason, why most parents does not go for assessments or does not go outing at all, fearing the worst.
I made it clear to them, we are not bringing our child again for assessment. I can come to collect the reports for final consultation. After that we were asked to wait outside, then we were asked to proceed to ophthalmology test and asked us to collect the Psychology report after that. Now it was already 1:30 pm, when we were asked to go to Ophthalmology test by the organizing lady and meet her with all the reports…. (The same organizing lady, who mentioned that ophthalmology department will not be available after 12:30 pm couple of days earlier…. I am not sure how to react, kept silent.)
Ophthalmology department is on the same floor (Udayar block, second floor), we gave the file to them and waited. We were called for the case history, again same old questions … The process involves putting drops on my sons eyes three times, after which a test would be performed. Initially he was asked to repeat the text and characters displayed in the TV, which my son did well.
Have to mention that girls working at the Ophthalmology department were so kind and comforting to my son, he co-operated very well. There was a time gap / waiting period between the three dosages of eye drops for my son, during which i decided to collect the Psychology report and speech reports.
Went to speech department for collecting the report, they asked us to make payment of 345 rs in order to collect the report. (Not sure why this additional payment was required, as this should have been part of the Assessment services for which we made the payment.) Waiting in the huge line for payments as there was a single person operating at the counter. After making the payment, collected the receipt and went to speech department, they asked me to wait for some time. After few minutes, one of the girls who took the assessment came and told, mam is not available today she will be available on Saturday, hence asked us to bring the kid another day so that she will observe and provide the report. Hearing this fueled the burning fire inside me. I told we are not bringing our child again to SRMC, we came for 3 days and you never mentioned that mam needs to see my son in order to give the report. I will come on Saturday to collect the report. She called someone from the reception and spoke briefly and said me to collect the report on Saturday.
I left from speech department and went to Psychology department for collecting the report, gave the file to them, they asked me to wait outside. Waited for nearly 45 minutes. They must have begun preparing the report only after I gave the file to them. The report did not have the IQ score as there were few areas of assessment were pending. They gave a CARS score. CARS is Childhood Autism Rating Score. The Psychologist explained in detail about what the report mentioned, and suggested NIEPMD for Behaviour therapy and also explore more on Son rise program.
Went to ophthalmology department, completed the final test by the doctor and left for the day. Before we reach home, we got a call from the organizing lady, asking why we did not show the reports to her. We told her, speech report is not yet ready it will be complete only by Saturday, since you mentioned to visit with all the reports, we were planning to give the file with all reports to you on Saturday. She was unhappy, but we were least bothered at this point of time.
Day (Day 3) came to an end. To be continued
Regards,
Saranya and karthik
karthiksaranyaparents@gmail.com
Autism Spectrum Disorder - Personal Experiences (Chennai Family) 