I've been away for a long time. When I started this blog, I was scared and excited! Excited about our journey and scared if I'm doing things the right way. The blog world helped me connect with a lot of parents from around the world, gain valuable information and just stay connected and share our wonderful as well as challenging experiences. I even met a few parents from India, spoke to some over phone and connected to others via social media. This space had helped me immensely.
Now, I'm back again. This time there is more of the 'fear' factor.
Vignesh turned 6 last month. I've been able to connect with a lot of families with down syndrome and also attended a few seminars and workshops. But, I could not identify with other families in terms of behavioral traits and so many other things. Even when I went to the workshop a couple of years back, I felt completely lost. This seminar was organized by Down Syndrome Research Foundation (UK) and when they were discussing about various studies and findings and common traits, I felt out of place. I found his behavioural pattern and interactions completely different from what was described or what I saw in other kids. I discussed with his therapists, but they felt I was worried over nothing. I thought it might be due to his tracheostomy.
We moved to a different city last year. Since then, there were 3 people - a developmental pediatrician, a psychologist (his school principal) and a therapist felt he is on the autistic spectrum. But, all three of them also said it could also be because of a lack of communication due to his tracheostomy. I later attended a workshop for the parents of kids on the autistic spectrum on the advice of the developmental pediatrician. This is where I felt like a complete fit. I could identify with all the behavioral traits that each parent was describing.
I guess even then I was attributing things to his tracheostomy. But, now I had again started reading blogs and was researching on ways to get over the behavioral issues that Vignesh has. This is when it finally dawned on me that he is on the spectrum.
I don't know why! I feel so scared. Why did it take me so many months to accept that he is on the spectrum is beyond me. When Vignesh's karyotype report came in for Down Syndrome, I shed a few tears and within minutes I was fine. I was only concerned with his health issues all the while.
I think I'm rather growing old or is it because I feel I have missed out on important interventions for autism for so long? I'm also having a hard time convincing the therapists here that Vignesh is on the spectrum. I have tried two therapists here. They are rather classifying him as extremely delayed rather than a dual diagnosis. I have tried telling them that he understands so many things but has problem expressing things in a social setup. But, they don't take my word for it. They are just concentrating on the Down Syndrome part and that scares me.
Vignesh's admission has been rejected by so many schools here. Finally, one of the special schools have accepted to give him a trial run for about 6 months. They find it difficult to have him for the entire day and they have accepted for 1.5 hours every day.
I guess it's the fear of not doing enough for him. I also keep reading that there is very little information so far on dual diagnosis. I'm not sure where I'm going to start. But, I understand there is so much more to be done.
I want to start the journal again. To learn, to share experiences, to connect with other families who are in the same place and not feel lonely. And, sometimes just to vent!
I hope I gain more confidence in myself and do everything that I can to help my son in his journey!
Now, I'm back again. This time there is more of the 'fear' factor.
Vignesh turned 6 last month. I've been able to connect with a lot of families with down syndrome and also attended a few seminars and workshops. But, I could not identify with other families in terms of behavioral traits and so many other things. Even when I went to the workshop a couple of years back, I felt completely lost. This seminar was organized by Down Syndrome Research Foundation (UK) and when they were discussing about various studies and findings and common traits, I felt out of place. I found his behavioural pattern and interactions completely different from what was described or what I saw in other kids. I discussed with his therapists, but they felt I was worried over nothing. I thought it might be due to his tracheostomy.
We moved to a different city last year. Since then, there were 3 people - a developmental pediatrician, a psychologist (his school principal) and a therapist felt he is on the autistic spectrum. But, all three of them also said it could also be because of a lack of communication due to his tracheostomy. I later attended a workshop for the parents of kids on the autistic spectrum on the advice of the developmental pediatrician. This is where I felt like a complete fit. I could identify with all the behavioral traits that each parent was describing.
I guess even then I was attributing things to his tracheostomy. But, now I had again started reading blogs and was researching on ways to get over the behavioral issues that Vignesh has. This is when it finally dawned on me that he is on the spectrum.
I don't know why! I feel so scared. Why did it take me so many months to accept that he is on the spectrum is beyond me. When Vignesh's karyotype report came in for Down Syndrome, I shed a few tears and within minutes I was fine. I was only concerned with his health issues all the while.
I think I'm rather growing old or is it because I feel I have missed out on important interventions for autism for so long? I'm also having a hard time convincing the therapists here that Vignesh is on the spectrum. I have tried two therapists here. They are rather classifying him as extremely delayed rather than a dual diagnosis. I have tried telling them that he understands so many things but has problem expressing things in a social setup. But, they don't take my word for it. They are just concentrating on the Down Syndrome part and that scares me.
Vignesh's admission has been rejected by so many schools here. Finally, one of the special schools have accepted to give him a trial run for about 6 months. They find it difficult to have him for the entire day and they have accepted for 1.5 hours every day.
I guess it's the fear of not doing enough for him. I also keep reading that there is very little information so far on dual diagnosis. I'm not sure where I'm going to start. But, I understand there is so much more to be done.
I want to start the journal again. To learn, to share experiences, to connect with other families who are in the same place and not feel lonely. And, sometimes just to vent!
I hope I gain more confidence in myself and do everything that I can to help my son in his journey!
I can so relate! Our son, Bo, adopted from Serbia, has all the traits of Ds-ASD, as well. We are having a hard time getting him diagnosed as such and have heard the "globally delayed" excuse, as well. I don't believe it. He is pretty smart! We went to the National Down Syndrome Conference in Indianapolis last month and attended the ASD tract workshops. It was so good to get some help and not feel so alone! Here is a great place to start: http://ds-asd-connection.org/
ReplyDeleteSending you much support and love - Sorry to hear about this - its so challending to get a second diagnosis
ReplyDeleteR also has Crohn's disease and I also found it much harder to deal with the second diagnosis - Autism always felt like a part of him while crohn's feels like the enemy in my child. I think we already have so much on our plate that it just feels doubly unfair that our child has yet another challenge to deal with
I have felt so angry with life and even with God :-(
Hi sumithra,
ReplyDeleteThis is Manasvini mother here. Sending you prayers and warm wishes and hugs. I am sure you and vignesh will win the world. The almighty is throwing you both in a dangerous pit, but will not allow you to fail. I have no words to express my feelings towards your little genius. You rightly address him as a genius....he is one. Hugs to you and vignesh.