I am pretty certain that the first thought everyone had when they heard about Nivedh’s birth was if he was hearing:). It was the same for me too, but honestly, I would not have been devastated if he had not passed the new-born screening.
In fact, I would not even have been disappointed! Though I am relieved that he is hearing, hearing loss is not something we dread now. It is indeed a challenge but then it is the gentlest of all handicaps (as my mother often reminded me) and by now we are confident of dealing with it! I only wished that he did not have a cognitive delay.That, would be something!
When Nivedh was a few weeks old, I checked if he had a tongue tie! Not a typical thing to check – but then, when you go through these rare conditions with your first child, you automatically check it for your second! This post is about how we came to know about Adith’s tongue tie. Reuben, an audiologist (not an ENT!) at AIISH who never saw Adith and whom I was seeing for the first time, asked me if he had oral motor delay or tongue tie 10 minutes into our conversation! I am pretty certain that his tongue tie would have gone undiagnosed until much later if not for Reuben! All I can say is that he was a Godsend!
My young cousin ‘Enoch’ was diagnosed with hearing loss at 5 months. He is just 4 months younger to Adith, born in January 2012. His parents were determined to teach him how to speak through listening alone and took him to AIISH ( All India Institute for Speech and Hearing), Mysore which is around 10 hours drive from our native place. Established in 1966, AIISH is one of the premier Institutes in India which offers courses in Audiology and Speech and Language Pathology and also clinical services to children challenged with hearing impairment and cognitive delays.
Enoch stayed there for 5 months and received intensive therapy for listening and speech. He made wonderful gains there and after returning to my hometown of Kottayam, was enrolled in a small school which was run by a former school teacher who raised a deaf daughter herself.
(Several years ago, she and her daughter had lived in Chennai so that the child could learn to listen and speak at Balavidyalaya, another established deaf school in India. Balavidyalaya follows a rigid curriculum and requires parents/ caregiver to dedicate themselves entirely for building communication skills for their child. This child went on to have excellent communication skills, was mainstreamed from kindergarten and now has 3 hearing children of her own!. The fact that her daughter was speaking fluently in English and that there were no schools in Kottayam that practiced AVT even several decades later, prompted her to start her own school some years back! Salute to this lady! ). The school in Kottayam that she runs also follows a very strict curriculum which demands active participation from the caregivers and my young cousin Enoch, now 4 years old, speaks my mother tongue ‘Malayalam’ with prefect articulation and everyone is of the opinion that he has more General Knowledge and clarity of speech than a typically hearing child his age! Way to go! So, my point is that, it was the excellent reviews from this child’s family that motivated me to visit AIISH!
We went to Mysore on October 20th, 2013 along with Enoch’s family (he had an evaluation appointment). The next day was Monday and we arrived at AIISH in the morning. There were several buildings in the campus and from the entry gate to the main building, was a neat garden being carefully mended by a few gardeners. For a premier institute, the buildings were not imposing but rather modest. We proceeded to Reuben’s office. Adith and Enoch had great fun running in the hallways while we waited for Reuben to come.
My parents watched Adith as I went in to meet him. Reuben was a very friendly person with a warm smile and he asked me a little about Adith – his earlier stages – was he crawling, can he suck from a straw etc. Adith never crawled after he could sit, he was traversing around the house in the sitting position heaving himself forward with his hands and legs in rather a funny way. Reuben mentioned that crawling with hands and knees was an important milestone as it involved a lot of co-ordination. And though Adith was 2, he still could not drink milk from a straw cup as well. I had tried several types of cups and finally had to settle upon removing the suction valves from the lid since he would throw a fit on seeing the cup and refused to try anymore. Reuben went on to check his audiogram and was surprised that he was not saying any words since he had only a mild to moderate hearing loss in his left ear. That is when he mentioned that I might want to check if he has any oral motor delay or tongue tie that prevented him from saying words since his hearing loss did not seem to impede his speech. In all of my life, I had never seen anyone with a tongue-tie nor heard of someone who had it! In fact, I had very little knowledge of what it meant and its effects on a person’s speech. Reuben asked us to meet the Occupational Therapist for getting it checked. This was something really new to me!
But then, the biggest takeaway from the meeting was yet to come! I was very eager to get Adith talking and had been trying to teach him say the ling sounds (aa,ee,oo,m,ss,sh). While doing the voice babble with my therapist ( a fun game that prompts him to say the ling sounds after an adult models it), he could say ‘aa’ and ‘ee’ and give some crude approximations for the rest. I wanted him to get talking as soon as possible ( little did I realize that it was a process several years long!) and often enquired of my therapists if his pace was good enough.
On the same note, I asked Reuben ” With 6 months of hearing, he can say ‘aa’ and ‘ee’ now. He can also approximate a few other sounds. Is that good enough?”. Reuben smiled at me and said ” Don’t worry about how much he is saying, you worry about how much he is understanding”. I was stunned. In my haste to get him talking like a hearing peer, I had overlooked the importance of building on his receptive language. “Once he understands everything that you say, how can he help talking to you?”. Reuben asked with a gentle laugh. To this day, I think that is the most important thing anyone has ever told me!. A remark that is candid, insightful and bang-on!
We went to see the occupational therapist later and she confirmed that he did have a tongue-tie. Adith could move his tongue to the sides but could barely lift his tongue to touch the upper lip! Wow! Ok, we had yet another issue but then at least we know that there is an issue now and that was much better! Maybe we could do a surgery and everything would be alright, I thought. A visit to the ENT at AIISH however, shattered my hopes. He said that tongue tie affects the production of very few sounds like ‘l’,’r’,’d’ and most children compensate for this as they grow older by adjusting their jaw movements and it was better not to do the surgery as it comes with the innate risks of anesthesia. The surgery could be considered if he was not correcting it on his own when he was older. I consulted one more doctor In Kottayam but could not weigh both sides of the surgery and left India without performing one. Once back in US, I happened to speak with a friend of mine whose brother had tongue- tie and had it surgically corrected. He was of the opinion that it was always better to correct it surgically and the earlier, the better. I consulted Adith’s ENT and he was of the opinion that since he was already facing a challenging of hearing, it would be better to make things easier for him. Made sense! On June 30th, 2014, Adith had the surgery to cut the membrane that connected the lower side of his tongue to the floor of his mouth. It was a surgery that took only 15 minutes and Adith enjoyed eating popsicle and ice cream afterwards:). He says ‘bevv’ for ‘bell’ and ‘heyyo’ for ‘hello’ now so I guess the surgery does not work like magic for a hard of hearing child but I hope he would be able to say it correctly with adequate speech therapy.
It was Adith’s IEP meeting at school last week. Prior to the meeting, the child is evaluated in various domains to see how he scores in areas such as comprehension, language, speech etc. Based on the evaluation results, a decision is made about his placement for the next academic year – whether he should be transitioned to a public school or if he should continue to receive specialized instruction at DePaul. Adith’s scores in various domains especially in Articulation where he scored “Extremely below Average” qualified him to continue at DePaul. In one of the tests, he scored higher in expressive language than receptive language which is very unusual. Most of his teachers agreed that though he is talking in long sentences, he does have trouble following directions and answering simple questions which means his comprehension is not as expected of a 4-year-old. At home, I had felt that when asked a question, rather than saying “I don’t know” or “I did not understand”, he would pick one word from the question and say something related to it which made no sense as an answer. In retrospection, I realized that my focus last year was on his ‘f’ articulation. I had sat down with him after school, practicing speech sounds and had cut down on reading books which would have improved his comprehension! There I go again! Once more, I had prioritized his speech skills over his comprehension. Some times, we need multiple reminders for a golden rule!
Back home after the meeting, I discussed the evaluation results with Loveson and we decided that we would focus less on the articulation part for now and engage in natural play and talking to improve his receptive language. In the evening, I was giving food to Adith (standing on the chair and performing some silly acts) and Nivedh (seated on high chair and watching his brother’s antics). Adith paid no attention to my warnings to sit down and while performing one of the stunts, slipped and fell down, hitting his jaw at the table. Since I had warned him several times, I showed no mercy. In fact, I like to sabotage when kids end up in trouble after disregarding their parents warnings! Loveson lifted the wailing child and seated him on the chair. He had almost finished his dinner and since I knew he was not going to eat any more amidst the tears, I said sternly ” you can got to bed if you are done”. Adith, still crying and rubbing his eyes, shook his head in negation and said in a muffled tone ” I want to do speech”!! Ha, this child of mine, I tell you!!