It was a Tuesday evening that we finally decided for TogetherWeCan family Get-together. Since it was on a weekday and Sivaa on a restricted diet, we planned to meet in my house which is apparently the registered office of TogetherWeCan. As usual I prepared Sivaa for the TWC family getto which is not so usual in his schedules. As soon as he came from school yesterday I just reminded him once again of the getto, he showed a very happy face. I gave him a banana instead of the usual snacks and asked him to wait until they all come. For him, all of them were familiar faces and the adaptation was easier. He patiently waited for them to join and had a fun filled evening snacks time with lots of food options.

Siddhu being a very social person unlike his brother enjoyed the evening with Brian Chettan, Sooraj and Sameer Chettan. Siddhu and Sooraj went little overboard and even started playing with our neighbors during that short lovely evening.

Anita Chechi our lady inspirer came with home-baked pizzas and peanut butter blondies which tasted heavenly and we gobbled it all in a fraction of second.

The three men when they met together for the first time had more togetherness in everything than the ladies so we called up the Iron Lady Padma pillai( Padmechi) to check whether the fourth men also shares the togetherness to make it more together we can.

We were gathered up there to discuss more about the objects and future plans of TogetherWeCan but apparently it became a fun filled evening which discussed more about diet restrictions with eating pizza on one hand and samosas on another. Every time Seema start off with our future projects but somebody would interfere especially Anoop saying, would you like to have more mixture and the conversation gets jumbled with Swami sweets and savouries.

For me this getto was more a kind of relaxing as Sivaa was very comfortable. Even then I was little curious as to whether it would effect his sleep pattern but by God’s grace Sivaa slept well and I should also admit that fact that he even slept little earlier than his usual time.

Sometimes all the therapy that we need is meeting people. And sometimes all we need is a change in routine.

Regards

Preetha Anoop Menon

The World of Neuro diverse.

Last week Sivaa was taken to the Tripunithura Temple Festival on all the 8 days. Since its biggest temple festival in the world and the pride of Tripunthura, we the people who lives in that royal town never misses the festival. Earlier i used to take sivaa for less than an hour to show him the royal procession of 15 elephants called the ezhunnallippu with the figurine of deity held on the top of the center elephant. For the past three years i used to make Sivaa stand closer to the pancharimelam which is another major attraction of the festival accompanying the procession with instuments like chenda, kuzhal elataalam and kompu. Pancharimelam is a visual and an auditory treat and Nadappara kalasham is an epitome of it.

Unlike the past years, this time i could realize that he was enjoying the melam as he was trying to move his hands and legs to the the rhythm of the music. For any child its difficult to bear the heat and the crowd but i was happy that he has grown enough to adjust to the situations. The crowd inside the temple both morning and evening was unimaginable. But sivaa was very calm and silent and even enjoyed everything around him. I was also happy that this was the first time after many so years i was able to go on all the days and even late nights to watch the festival and have a good darshan. Seeing the positive change in sivaa everyone began to appreciate us. Some of them even said it all happened because of the exposure that we are giving him. Yes of course it all happened because of the social stimulation that he got through during these years. But I’m wondering as to whether it has really helped my son. On one hand he has become more manageable, more understanding and also to some extent helped me to identify his new interests and skills. But on the other end I’m seeing more of sleepless nights and proprioceptive dysfunctions. The last whole week he had a very disturbed sleep.

It is just like tightening one end of the rope wherein the other end is still on the loosen side. we all write and speak about the positive things that has happened to our child in the spectrum but we less discuss about the challenges because we are all living with a ray of hope that one day God shall forget to give us more challenges. Yes I like to tell you about his swimming, skating and of course his eating skills and many other things he enjoys but never about his fine motor skills nor his speech. Every parent to a special needs go through one or the other challenges every single day. But do you also know, every parent inspires the other in one or the other way. when i write about my achievement of taking sivaa to a social surrounding, I would be inspiring you but when i write about my child’s sleepless nights, you would be praying for me.

So autism as a spectrum should be accepted not according to the skills nor deficits and challenges it should be viewed as a whole, unique to each child. And I think it’s the child who should be accepted as such and not his condition and the rehabilitation should be done considering the whole family.

Finally coming to the topic whether social stimulation benefits, completely depends on each child and the circumstances that he is living.

Regards

Preetha Anoop Menon

Last two three weeks, we were all busy and altogether upset and more shocked by the sudden demise of our Grandmother during Diwali time. She was a great human being and Anoop was very affectionate towards her. Knowing Anoop’s intimacy with her, it was more like my duty to be with him to support and bring him back to reality. Knowingly or unknowingly I had to leave my support network with Sivaa as I wasn’t able to handle all the things smoothly thereafter. Praying and assuring his safety I gave him to those bunch of hands who offered to help at that peak of time. That became a hope and assurance that he will live his life when we both are not in this world.

He didn’t panic… nor he didn’t act neither react…. He just moved on with the flow of waves. He was so cooperative that he proved to me that he could wait in front of the ccu for hours and hours and at times he slept in those less comfortable waiting chairs. All these years I was worried about his sleep pattern, I would make everything comfortable so that he gets good sleep. But I witnessed that he could even sleep in couch in the middle of a noisy chat room. He quietly sat with all of us during the funeral day. I could witness that he was also in pain at times seeing his loving Achan s sad face. But he didn’t weep or make a sound. And finally when the body was taken for funeral, he quietly sat behind us to bid adieu to his Great Granny. I’m using that word ‘Normal’ because it all went normal and natural as it should be… I didn’t bother to think my son was special needs. He even surprised me by waking up at 2 ‘O’ Clock and having his bath and getting ready to go to Tirunavaya for doing the final rituals.

The child who needed verbal prompts from morning brushing activity to evening bed time activities was never seen there. He was all set ready himself by others instructions and commands. Even little Siddhu couldn’t be with as him as he was also equally shocked and confused. I still remember asking Smita Avasthi Mam during a seminar at Cochin as to how to stop giving verbal prompts while he was taking bath. And I know how much I struggled to make him Independent in bathing.

Today when I’m writing this, Sivaa is in school pestering his teachers but I’m proud of his morning routines. He didn’t wait for any verbal prompts for brushing or bathing nor washing his hands before or after his meals. He buttoned his shirt and managed to self care was all set ready to get in to the auto before time.

This is definitely a wake up alarm for both of us. we were too much bothered and concerned about him. By doing so, we failed to give them opportunities and rather we did it for him. But it’s a fact that these children know how to tackle, explore and exploit the situations. Now it is left to us as to how to pass on the ball to them.

When Anoop gets healed as the time pass by, let him get surprised and super happy seeing how far his son has achieved through that little time he was not with him.

when the whole world says give up, its the beautiful hope that whispered to me one more time..

Take it slow Mom’s… They are definitely following us.

Regards

Preetha Anoop Menon

Oct 10: World Mental health day.

#Story of our world# Story of happiness

Siddhu gets so excited everytime when he see his brother swimming like a fish in the sea. Sivaa enjoys swimming and because of his love for swimming and playing underneath the water, he just forgets his disability. And seeing him floating in the water like a paper boat brings so much of positivity and confidence in myself and Siddhu and we both feel like jumping in to the water every day. Being an adult I control my urge but siddhu keeps on pestering me asking for the permission to swim with his brother.

Oh OO….friends, please don’t judge my parenting as to why am I not sending Siddhu for swimming?😉 The boy gets so scared inside the water. We have tried several times and he cries till he reach the other side and hesitate to even send Sivaa to swimming. Swimming class start late in the evening for Sivaa and he used to go with Anoop every day. And when ever Anoop is out of station, I and siddhu accompany Sivaa to swimming. Last week when I took both the children to swimming class, Siddhu seeing the easiness in Sivaas swimming wanted to give it a try. Thankfully the trainer was inside the pool and he allowed Siddhu to enter the pool. As expected Siddhu started screaming at the top of his voice and somehow managed to reach the other end. Sitting on the pool ladder he began to envy his brother who was doing summersalt inside the water at 10 feet. Sivaa always plays and swims at 10 feet were it would be less crowded and less noisy. People who are really good at swimming would swam to that side from 4 feet. Those who are on the learning stage will always be at the 4 and 5 feet.

Siddhu thought for himself a moment and came with a funny solution. He said; Look Amma, I think (pointing to Sivaas side) that side would be easy. Chettan never comes here. He finds this side difficult. I want to be on the other side with my brother. The trainer and the people who have come there had a good laugh hearing Siddhu. I controlled myself and let Siddhu go there. On his way, I showed the number written on the place he was standing which read 4 feet and also asked him to read the number before getting down to Chettan s side. He read it loud. It’s written 10 feet Amma. So I just reminded him in a louder voice like his teacher 10>4. Soon he stepped back and went for a shower and came with his dress changed.

He was so upset and rather more confused. He didn’t ask anything. He was very quiet . Hearing the final call from me to pack up,Sivaa came out from the pool and had a shower. Sivaa smiled at siddhu. Siddhu ran and hugged him saying I’m proud of you chetta. He was crying almost and Sivaa smiled back again with a pat on his shoulders which was worth a thousand words. Soon we came back home. The scooter ride too was calm and silent.

Since Anoop was out of town, we soon had our dinner and got early to bed. Sivaa dozed off in a minute after the long hour swimming practice but Siddhu was still very quiet in the bed. To break the silence, I said Amma is feeling very tired and sleepy, do you want to hear stories? Immediately he replied; No Amma, But I wanted to ask you something. He continued.. You said Chettan is different because of this… I acted like I didn’t understand and asked because of what? Siddhu explained; Chettan is able to do what everyone finds difficult and Chettan is not able to do what everyone finds easy. Is that makes him different from others? Siddhu didn’t wait for my reply. He continued on and on about Chettan s adventurous stories. After a moment of silence. He said; Amma….Chettan is really awesome… Tomorrow I will tell everyone in school bus about my awesome Chettan…🥰🥰🥰

Some days end up with a beautiful smile.Some days end up in a wet pillow. But there are also some awesome days; Wait for that day.

Regards

Preetha Anoop Menon

After seeing my fb and Whatsapp status and Seema’s detailed fb post, I got enumerous messages on Whatsapp and messenger as to what was my takeaway from Amaze as a parent. Well, it’s the same as described by Seema that Akila vaidyanathan herself is an institution and Amaze charitable trust is an university which acknowledge her methodology through their interns

Follow your child

The first and foremost thing I learned from Amaze that they work on the principle of following the child. Like in any centre or school, it was not written in their brochure or in their premises nor in her talk. But I could witness that through their way of dealing with children. It was so evidently seen in all the staff.

Calmness everywhere

I have gone to many therapy centres and to many schools and even special school’s. The very interesting and different thing that I saw in amaze was every teacher was calm and quiet and was working with minimum voice and more of gestural prompts. That doesn’t mean that the interns were also calm and had any meltdowns or tantrums. But they were all trained (both the staff and the students) in such a way that they knew how to handle the situations on their own.

What works for the least.

This principle is the best which makes Amaze stands out of the rest. Everywhere they program and plan a schedule that can be adopted to the majority but in Amaze they plan a schedule that suits the minority so that all of them can function well

A best teacher can groom all her trainers to bring out their best.

We have seen many good therapists running a centre crying and struggling to get a good therapist. We have also seen the best teacher running a school with not many good teachers. But in Amaze you can see a best teacher has imparted the best to all her staff and which makes them stand out of the crowd. We always hire the best professional but have never thought of grooming a best one without even knowing them that they’re the best.

There’s always an end product.

This was an eye opener for me. I make Sivaa do a lot of things on our one to one session. I have seen in his school also they make him do the same. And I have noticed Sivaa looses interest soon. But in amaze every activity that the student does results in an end product. Whether it be a craft related work or a painting or any other activity it reaches out as an end product outside. The sameness or repetitiveness can be avoided and there’s always an answer to why I’m I supposed to do this?

More of a teamwork

I noticed that it was more of a teamwork than representations as to this is a professional and these are interns nor could distinguish between the professionals and other assistants or helping staff. All I could see was a keen interest to handle the given situation smoothly without classification.

A lot of Movement was indeed a blessing in disguise

Unlike the others, Amaze charitable trust runs within two to three rented building in a residential locality. The interns need movement from one activity to another. Like for example computer works would be done in one building and yoga in an another building. So after every session students move from one place to another which is hardly a two minutes walk. I don’t know whether she had planned in such a way but I’m sure that it’s one reason for her success.

No showcasing as to talents.

Every child was introduced with due respect irrespective of their talents. No classification as to he is a good singer and other a poet. And no one was forced to showcase their abilities but spending a whole day, we could easily figure out as to who was good in what.

Akila Vaidyanathan as a mother.

This is the highlight and was the biggest takeaway for me as an a parent. She is a living example as to how a mother should be. She said she just followed her child which lead to the formation of Amaze charitable trust. She really impressed me when she said how she created an environment suitable for her child and also amazed me by her calm and carefree attitude when her own son was going through a meltdown. She didn’t interfere or panic nor did she interrupt, she just very calmly give him space to deal with it. It was quite surprising that he was back to schedules so soon. As a mother and as a women she is awesome and remarkable that every mother should get meet her and learn from her and from the entire team of Amaze.

Akila vaidyanathan and Amaze charitable trust are exceptionally good and may their tribe grow and conquer all over the country.

With lots of love

Regards

Preetha Anoop Menon

Little pissed off with writer Subhash chandran and another writer from women’s web.

As soon as the child is born and is diagnosed with any disability, we mothers are also segregated and given that special tag. In every house it’s the mother that changes and adapts herself to the norms of raising a special child. A newly diagnosed childs mother undergoes tremendous stress, anxiety and depression and also through a state of denial for acceptance. During these stages it’s the inspirational stories of successful mother’s and the love and support that she receives from both the families which instills hope and confidence in every mother. But unfortunately people disagree to this and makes the life of every disabled mother more miserable.

Last week a Malayalam writer said it’s the unhappy woman in marriage give birth to autistic kids. He was very naive and insensitive to pass such filthy comment about a very sensitive topic.A newly diagnosed childs mother who is struggling to find an answer for the question ‘why me’ hear such rude comments she will definitely think of killing herself and therby the life of the special child gets effected very badly. People somehow fail to understand that part of motherhood.

During our initial stage of parenting, it all started with trial and errors. Nobody gets any training or attends any rehab program’s. But we are constantly being cursed for bad parenting. This life that every special mother lives was never our choice.. Like any other woman we too dreamed of a Career and a normal life .

The saddest part apart from all these is that, if we write or speak about our journey sometimes you criticize us saying we are trying to glorify motherhood or disability. Two weeks ago when Arpita yadav told her life story on a National platform to gain inclusion and more acceptance towards disability, I was shocked when a writer of womens web magazine titled it as Inspiration Porn and as glorification of motherhood. But truly speaking when all the other works are getting appreciation why aren’t we being denied the same. But Some other times you have also admitted that our journey is quite inspirational. But for us mom’s when we speak or write about our journey,we are only trying to create awareness, inclusion and acceptance within and outside our society.

It is always acceptable when you term our journey as journey to a road less traveled but that doesn’t mean that you can be always be ignorant of the fact. I know a few of my friends who are out of disability parenting had told me once that parenting a neuro typical and neuro divergent is all the same that both donot listen to parents. Truly speaking, there’s no one instance that Sivaa had disobeyed me and several times siddhu has. But that also doesn’t mean parenting Sivaa is easier or he is an easy kid.
So going forward people it is a humble request from a special mom that instead of creating a disability taboo or segregating us, please try to prioritize and include us by following your heart and soul.

Regards

Preetha Anoop Menon

It is onam everywhere and both the children were participating in the cultural events in school as part of their school onam Celebrations.Sivaa was selected for pulikali as he rocks and jumps all times. Siddhu was selected for onampattu which is also an integral part of onam. Apparently both the celebration happened on the same day and it was our choice to select which school we should go and watch out the programs. I wished to see siddhus program because I was getting daily updates as to the program and the rehearsals. And indeed it was quite interesting to hear to him and his friends. But when I thought of Sivaa who was totally mute as to what was happening in his school, I didn’t have to rethink again. I decided to go to Sivaas school. When I told about the kids program to Anoop who was out of town the last two three days, he accompanied me to Sivaas school. We reached there by 10.10 and as usual we took the last seats with my video on, anxiously waiting to watch Sivaa and his Pulikali.

But it was a fact that I couldn’t take videos as I was so overwhelmed with emotions to see those junior batch on stage. From back seat their performance pushed me to front seat.And When pulis assembled on to the stage, I couldn’t control myself that I kicked off my seat and came to the stage to applaud them. Seeing the loud round of applause Sivaa removed the mask and smiled at everyone. It was a moment of pride for me and every mother who sat there. It was a moment of pride for every teacher who was actually performing with them. I could feel the tears running down my cheeks. It was a tear of happiness and joy.

If you ask me did Sivaa dance like puli, No.. he didnot… But I know my son was happy through out… He listened to his teachers. He faced the audience and he could withstand that sound from loudspeakers.

Yes it’s an achievement… A huge one.. Thank you so much teacher’s for that awesome gift you gave me today. I know the pain and pressure you have taken to bring this on stage and I saw the efforts you took to make them actually perform when they were on stage. I understand that words would be too less to describe your efforts.

Teachers you are special and you made us special today. Thank you so much. We mothers owe to you.

With lots of love and prayers…..

Regards

Preetha Anoop Menon

The world of neuro typical.

It’s exam season for little Siddhu. And it’s the latest fascination for Siddhu. The marks that he and his friends get is discussed among them with so much of pride and prejudice. And his major attraction is the 10/10 that comes with a smiling face and stars. Last week he was very sad when he stepped out of the school bus. I could easily figure out it from his face that he had received his maths worksheet. He came running to me crying and showed the maths paper. It read 8/10 with no stars and smiling faces. As usual I reacted with a Wow and raised my hand for a high 5, which he rejected saying I was not diligent and showed a carefree attitude. I was bewildered, I couldn’t answer that sobbing little heart.

I wanted to tell him that I said ‘wow’ because I knew the efforts he had taken at this tender age with no support from anyone to achieve that.

I wanted to tell him that mistakes are the pathways to each success lines that he crosses in his life.

I wanted to tell him I said ‘wow’ because he was able to understand the two mistakes that he has made. Being able to understand your mistake and rectify that is a difficult task in everyone’s life. Amma felt proud for that Siddhu.

I also wanted to tell him that while looking through his answer sheet, I was seeing a legible writing in the spaces provided within the stipulated time by understanding the question and the concept to be used, which is a life skill that I’m trying hard to imbibe to your brother.

And also if marks decides the destiny of your life, there won’t be any successful entrepreneurs, artists, musicians, sportsmen, scholars and poet’s in this world.

Now I know he is too small to understand these things. Sooner or later he would get to know what I was expecting from him. Marks for humanity is the only one that really counts.

Live as a good human being and leave a signature in the minds of people.

Amma will be always proud of her little achievements. Amma is proud when you recited ‘judge me not’ at school competition and got selected for final rounds. Amma is also proud when you got first prize for Ramayana story telling competition. But Apart from that Amma felt so thankful to God, when you shared your snacks with everyone inside bus.

Regards

Preetha Anoop Menon

Last week I saw a video which went viral among the autism fraternity of a doctor who depicted a child’s screen time as a cause for autism. I cannot fully agree with this because my child was never interested in any electronic gadgets or I would say he was less exposed to screens during his early intervention period but still he is diagnosed autistic. But I do agree to the point that screen time has it’s negative impacts on any child’s brain irrespective of the diagnosis. Since I’m not an expert in this field, didn’t respond to the discussions that happened in Whatsapp and fb groups. And also didn’t take it personally as it was considered as one among thousand opinions that I hear on a daily basis in this journey through the life of autism. But today I happened to see a video which would soon become viral from a so called professional who elaborated about the beauty of autism. That really shook me up to actually pen down my opinion.

Believe me friends, I have never been able to see any beauty in Sivaas autism. But my child is beautiful and I love him unconditionally. But that doesn’t mean I love his diagnosis..the so called autism which makes him struggle through every moment of his life. But despite of all these struggles he tries hard to connect with this not so connected world and I love him and feels proud of him for that part. I follow my child and not his diagnosis because I understand that every child is unique and special whether autistic or not.

When autism effected his daily living activities he tried hard and struggled with his strength to come out of it. Due to autism, his fine motor activities were effected and my son is still struggling hard to write, I failed to see the beauty part of it. As a part of autism and apraxia when words doesn’t come out as speech, he started using Avaz as his mode of communication, the glorification of autism is hard to digest.

I’m sharing a video of Sivaa and his cousin with you all. This video would make you understand more about Sivaa and not about autism. He is struggling hard to connect with his cousins and that too with a smile on his face and I love him for that beautiful smile . You can see so many distractions happening around him which is making extremely difficult for Sivaa to regulate himself and that too in a public place, but the way he is trying to communicate and connect with his cousins is heart warming to see. So please going forward we will not glorify the diagnosis and let us all together focus and follow the child. Let’s all spread love, hope and beauty of the child and not of autism.

Regards

Preetha Anoop Menon