Saturday, February 28, 2009

The journey so far...

The Initial diagnosis
Our son was diagnosed with autism as early as 18 months.Our first concerns were his lack of speech, and social skills.The pediatrician expressed his concern but did not push it futher, more so because we are a multilingual family in that we speak 4 languages at home.In our subsequent visit he sounded the first warning bell.We followed it up by a hearing test. The test confirmed his hearing was normal. We were then referred to a psychologist and then began our journey .We had already started reading up on some material on the Internet on autism.Call it coincidence.I used to take him to a playgroup, where one of the mothers was a pediatrician again.I expressed my concern. Luckily for me,she observed him for an hour in natural settings. She called me up and asked me if I heard of the word autism. All of a sudden things were moving too fast. We were in the United Sates at that point of time.We had never heard of this problem back home. We got a second diagnosis at UCSF;California.I was taking Harish to a program called the Parents group at Pacific Grove. The instructor put me on to the county program for special children. Sitting in the drawing room we suddenly found we were the parents of a under privileged child. Before long services for him were being made available to us at our doorstep. The Monterey Peninsula Infant program services were offered to us. This was the best part of it, with the therapist being very reassuring. They did an initial assessment. We started out with speech, OT and floor time method. As he was totally non verbal we started with PECS and he made impressive progress in a short time. We did a whole lot of things such as screening of allergens with THE Great Plains Laboratory, followed it up with antifungal therapy, vitamin supplements, chelating for toxicity and monitored his behavior. We did not achieve any great success with these. We practice floor time with him to this day but in a much toned down manner, as his social and communication skills have also come a long way looking back, there was no time to reflect, shed tears or wallow in pity. We had six months left before moving back to India. My husband was there on a 2 yr masters program at NPS. We were in a hurry to pick up available resources, techniques, tools and that includes books and even people toys such as Jack in the box. Once you have a diagnosis on hand, it is much easier to draw up an action plan. It is like confronting the beast by its horns. It is true we did have a period of self denial after coming back to India, but it really saddens me when parents 4-5 yrs into the diagnosis, deny the problem. They try to shrug it off as hyperactivity/ADD.

The Return Back To India
We were quite apprehensive of our return, as to the resources that would be available. These fears were put to rest once our son had his first session at AFA at Chirag Delhi. The building was depilated and had to be reached by a narrow by lane after climbing two flights of stairs’. Harish and his therapist got along well, in their first session itself. That was very comforting. I was bringing him here for his remedial intervention once a week. They follow the TEACCH system. AFA gave me the much needed confidence. One learnt one doesn’t need expensive toys. In tandem with their philosophy AFA believes in making mothers equipped to handle this problem. They use the most indigenous, inexpensive tools ingeniously to work with the children. Harish stared out with matching and mastered it in no time. Apart from that I was going along with him to a MONTESSORI School. This was not out of choice, but I learnt Montessori system is ideal for our kids. As for the Montessori system the children work with various apparatus. This greatly helps fine tune their sensory, motor, spatial skills. The school had an arts class, music class, circle time, snack time, play time. The curriculum was made to order for him. Besides, he was learning more important skills such as peer interaction, class discipline, greeting his superiors. Our experience in the school taught us to stand by our convictions. We had enrolled him in the school, stating his problem. Once the management changed we were asked to leave midyear with the usual excuses of “in the interest of the child”,” we are not trained to handle this problem”. We fought with them and finally they agreed on the terms I take full responsibility for him. I faced total apathy and the teacher would turn her face when I would walk into the class with him. Those days he was hyperactive, would not sit in the class, throw tantrums, grab from other children’s plate. We persisted, when the matter came up for review, the teacher walked up to me and told me I have no problems having you both in my class. I have told the management also the same. We continued for another year here. When due to age restrictions we had to move on, he was the most loved child in the school. Luckily again we got admission into Santa Maria, Vasanth kunj.I am yet to find a school so accepting of the problem and the generosity of their spirit. We had planned to put him in nursery, but they felt he was academically ready for the lower kinder garden. By the time we left SantaMaria, he had 1 friend he associated himself in his class.I did some conventional speech therapy.He also began verbal behavior under the tutelage of Ann Jose varuvuala, one of the few certified practitioners in India. She felt his motor imitation skills would help him pick up few signs. There is an Indian version of the Makaton book with signs for roti,dal etc.He also picked up swimming and cycling in Delhi.These were the initial years.

The interim years
Later we moved to Pune, and he did his upper kinder garden in a regular school with the help of a shadow teacher. Again due to age limitation, we had to move him to another school, the experiences of which being one of the most sordid ones. The school was a big letdown. They had promised integration. Finally he was in class with a single teacher handling 8-10 kids with disability and 5-6 on the spectrum. How could she ever do justice even to a single child? The sad part being the principal and the psychologist knew exactly what was to be done but shirked responsibility shamelessly. He regressed badly. Three months into the school I pulled him out and stared homeschooling. I had a lady come over to help me with him. We tried homeopathy, but he developed a lot of sensory issues. Later somebody suggested a DNA/RNA treatment .We had to give up on that as it didn’t seem convincing. Later we found a therapy centre, but as my husband’s posting came along I had to pull him out. The only positive outcomes were I tried RDI more earnestly at home, ensured he had peer interaction in the evenings by being regular at some of the parks, I frequented in rotation, and made some progress on the academic front. The biggest gain was in his gross motor skills. He picked up skating, basket ball, throwball and little cricket. On the communication front I started a communication folder under the guidance of the speech pathologist at Khatraj University. I could not follow up on verbal behavior. We started the GFCF diet, just in desperation, hoping something works. My husband pushed me to adhere to it.

Now, at Jabalpur
He now attends a special school. He is much calmer, more present after he is now into the GFCF diet for 8 months and still going strong. The turning point in our lives has been somebody mentioning the son- rise program. The one web seminar I watched motivated me to try speech therapy with him at home. I have been doing this religiously for the last two months. Our little son has started to talk. He started with sounds, words and is gradually progressing to sentences. It is all about timing. Call it divine intervention or the success of the GFCF regimen.Yes; it is very much at the basic level and very need based. As long as he is able to communicate, I should be happy. I followed it up by a CD on the Hanen program. I also play the keyboard and ask him to sing with me during his sessions. I have started with the initial notes the sa,re ,ga ma of classical carnatic music. The purpose of doing this is so that he gets to vary the speed of the notes; the intonations he picks up all might eventually help him in his speech. I also do oral motor exercises such as rolling his tongue. I do rhymes with him such as Johnny,Johnny yes papa……I do circle time where he has to call out the names of other people. I ask his sister to wait in an adjacent room and make him call out her name so he has to raise his voice. His speech is not yet clear and will require lot of work. After all, he has been a silent for the last 8 years. He has picked up badminton recently (he gets 10 shots in a row), got himself a big boy’s cycle. His writing skills still have a long way to go. And so, the journey continues….
In retrospection we are stronger as a family (quantitatively and qualitatively).My daughter was born when he was 5 years old. We have got to meet innumerable people, many who have been exceptionally kind to us, rediscovered our own strengths and weaknesses. Only regrets being we should have given him more stability in terms of schooling, therapist and communication systems. Hoping and praying for the best, wishing things work out well for all four us.

4 comments:

Homeopath said...

interesting blog....

Anonymous said...

Hats off to you. Wonderful news to know that Harish has finally begun to speak. Best wishes and prayers always. love Ann

viji said...

Thank you so much.

Padma said...

Thrilled to know Harish started speaking, I am sure in these two months he must have picked up more words.
GOD BLESS YOU ALL.
Just now wrote a mail to you,thought of reading your blog later,but couldn't wait.

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