Dual Diagnosis

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!

Vignesh's Little Brother

Vignesh has a little brother now :) Ramesh & I are happy to introduce our new born, Pranav. He was born on the 4th of this month.




Pranav with my sister



I can't wait to take a family picture especially with Vignesh & Pranav together. But, looks like Vignesh needs a little more time getting adjusted to the little one. :)

First day in school

Today was Vignesh's first day in school. I'm taking him to the day care a couple of hours in the evenings, so that he gets accustomed to the place first. Once, he is used to the place, we'd be moving him to playgroups. I'm very happy with the school and the people there. Although, they have not had dealt with kids having tracheostomy or down syndrome, they are willing to give a try and see how things work. Its a nice place and I'd love to see Vignesh settle there and make friends.

The session started with rhymes and Vignesh enjoyed it. But, once the other activities began, he totally lost interest and got into a 'throwing spree'. We tried various games, but he was only vigorously throwing everything away! He was also trying to roam around on his own and stay away from other kids. I think he was probably shy and the throwing was his way of expressing it. Especially, when I saw that the other kids were so organized, I couldn't help but compare and panic. I know I'm being unfair and it was his first day and all. But, I think just like Vignesh, I too felt lost. Thankfully, the school director is a very understanding person and she made me see I was being unfair.

I'm just waiting to see how Vignesh is going to do tomorrow. I'll need to discuss with his OT about this too. I'd love to have suggestion or advice from other parents.

I'm too tired and sleepy. It well past midnight here. Today, being a special day, I just wanted to make sure I keep a record of this day. Before I log off, here are a few pics from Vignesh's first hair-cut:

Excellent November!!!

This past month has been amazing!

Vignesh started to pull up and stand without support and could now stand on his own for about 5 minutes.




He also took his first step without support (now, he just takes a step or two on his own)

He has begun to climb up and down sofas and beds. He has now started climbing chairs and staircase.



He has also learnt to turn on and off the switches and calling bells (Just love the way he turns to see if the light/fan turns on once he is switching them on)

He has also started to hide and make his mama run around the house searching for him.





And, last week he wanted me to play his rhymes dvd. When I din't, he took 2 DVDs and see how he tried to play it on the television! lol!






In the beginning of the year, Vignesh began to pull himself to stand, crawl, cruise and walk with support. But, for many months after, he did not achieve any new milestone and it was making me worried! Now, the end of the year is rocking again! I'm so proud of Vignesh.

Favorite Video

Here is a video of Vignesh signing. Vignesh & I love this video.

Vignesh II year photoshoot

We had Vignesh II year photography done about a week back. We just had a small celebration for Vignesh's 2nd birthday on July 15th . Din't want to miss on taking his portraits though. We had to hurry up with it. (You will you why when you scroll down to the last pic on this post.)

Here are the pics from the photoshoot





Performing for his favorite rhyme 'Listen to the music'




& 'Clap your hands'






Here is a photo of Vignesh in a different hairdo



And, this is the reason we had to hurry up with his photoshoot.

My cute little laughing Buddha!

This is a part of our custom. They generally shave a baby's hair once or twice between one to five years.

oh, I so loved my son's long hair! Can't wait for it to grow back again.

Quick update

Vignesh had his airway surgery on the 22nd of last month. Doc wants to try decannulation after 4-6 weeks. Vignesh is doing fine and keeping me busy with his antics.

Vignesh Loves his New Potty

After a lot of procrastination, I went to shop for potty yesterday. Got confused with so many varieties and finally got a basic model one:

When I made him sit on it this evening, he wanted to get down after some time. I thought probably it wasn't time for his routine. And, when he got down, I just saw how much he loved his new potty. Just look at these pictures. You'll see what I mean.

Just for the records, the potty was yet unused. So, you might get to see him continue playing with these toys for sometime. lol!

After his dad got back home, he just removed the toys from the potty and made him sit on it. And, yes Vignesh did it and even tried to climb down after that. So, happy that he inaugurated his new potty on the very first day..... ;-)

Milestones in the past 3 months....

The past 3 months have been good (hope I don't jinx it again!) . Therapists play such an important role in our children's lives. So, switching therapist is one of the most difficult decisions.But, ever since we relocated in June last year, we had to travel quite a distance everyday for Vignesh's therapy. So, we had to make the switch. In Feb we got a new home-therapist for PT and in March we had home-therapist for OT.

However, after I switched therapists I had my own doubts and guilt. I was worried if I was placing my convenience before my child's future. I was even contemplating going back to the previous ones, a lot of times. But, within a month, both the therapists did a wonderful job and have made Vignesh achieve milestones which I had been so worried about until then.

And, two weeks back I received a call from his OT that she would not be able to continue home-therapy due to her health condition. She has been advised against traveling by her doctor. After her phone call, I broke into tears. I have become to trust her so much. Thankfully, she is now continuing therapy for Vignesh at her place and I don't mind traveling there everyday.

Thanks to my little hero's hardwork and his therapists' efforts. Here are a few things that my son has learnt in the past few months: (BTW, he has become so camera-conscious that I find it difficult to take photos/videos once he sees the camera.)

Pulling up to stand

Walking around the house on his own (with support)

Crawling (although he prefers scooting)

First step towards self-feeding

Enacting 'Listen to the music and clap your hands' ( it took me sometime to understand why he was catching his ears after clapping his hands)

More about Vignesh playing games soon.

The right to dream!

Today when I had taken Vignesh to OT, I had to wait for a while. There was Parent-Teacher meet happening in the adjacent room. In addition to providing PT and OT, the center also run a small special school and a few kids study there. Its a very small place but they are extremely committed in their work. Since the place was small, I couldn't help hearing the conversation that was taking place. Although, the parents were discussing simple things like numerals and day-to-day activities, their voices were filled with pride, dreams and the aspirations for their kids.

I remember an incident that happened last January. My son was not even 6 months old then. I had been trying to find a good therapist and was asking details from one of my close friends whose little cousin was undergoing PT for CP. All I wanted was a reference to a good therapist. But, when my friend calls back, she tells me how the therapist said that if I start early my son could be trained. So that when he grows up, I could set up a shop for him to work and take care of. And, she sounded excited about this! Excuse me! Doesn't this sound crazy to anyone or is it just me?

Why should people be discussing what my son would be doing for his living twenty years from now, just because he has special needs? And, why does she expect me to be excited even about the prospect of my son a job? I just wonder if this friend would be as excited when I tell her I'd set up a shop and wouldn't mind employing her children there too.

Its isn't about the nature of the job. Its about the attitude. That is when I began to understand how people expect you to stop dreaming once you have a child with special needs. I dreamt of so many things I wanted to achieve professionally and my parents had so many dreams about me too. And, I don't think I have fulfilled any of that. So, when they give chance to me, why shouldn't people with special needs be given a chance too? And, when my parents had a right to dream about my future, why shouldn't I do the same about my son's? Why should people talk about acceptance when I have high dreams about my son's professional future when the same people can dream about their typical kid's future even before they know what their kids are capable of?

The point is I do have all the rights to dream about my son's future. And, when my son grows up, he can choose a profession that suits his skills and liking. If my dreams come true, I would be happy. If not, I would be equally happy too about whatever he does, just as my parents are happy about me today.

I just hope that these people realise that our kids are too young for their advice or career guidance. And, if they really need them, we as parents can handle the situation without their help!

Carly

Rest in peace, beautiful Carly!

May God give strength to the George family even as their little angel is flying high in the heaven!

Vignesh with Specs

Vignesh with glasses

He took it better than I expected. At least, he has it on for a few minutes before trying to throw it away. Not sure, if its because it helps him to see things better or if it is too close to his eyes for him to notice it.

This is how he would look if he was my daughter. lol! I better hide this photo before he grows up and kills me for dressing him up like this. I'm going to miss his long hair after July.

Vignesh's second trip to the beach.

I choose to post the dark picture deliberately. You know, until I reduce my weight, I prefer to stay in the dark. :P

Down Syndrome Celebration - Part II

Kids and their proud moms

These girls were so talented at keyboard

Dance and Expressions

All of them having fun dancing to Jai Ho