When wearing masks became mandatory as per government order, I was anxious about Sivaa who has high sensory related issues. All these years I have got exemptions from everyone in wearing things that have sensory issues with Sivaa. For example Sivaa was exempted from school as to wearing school shoes and socks. I know the struggle I had taken in making Sivaa wear shoes with socks. He would remove it now and then and someone has to be behind him running to make him wear it back. Unlike the other things, mask cannot be exempted. It’s for his own safety. I cannot substitute or exempt it. I have no choice left than to teach him wearing that asap.

First step towards teaching.

The pandemic situation was taught to him well in advance . He was also seeing Anoop wearing masks every time he steps out of the house. And Sivaa spends most of his leisure time sitting in our porch and thereby he got a chance to see people wearing mask while passing through our gate.

Second thing we did.

We took turns and started wearing masks like in a game and we all repeated that we need to wear mask while going to Swamis Sweet shop next week. Sivaa being a foodie and Swamis Sweet Shop is one such favorite place of him,It was easy to grab his attention saying that. Siddhu explained in detail about the lists that he is craving to buy from swamis shop which tempted Sivaa and he forgot for 15 secs that he was wearing mask all that time.

Now we are extending the time slowly and we have reached till 60 secs in just two days. We are planning to this daily and consistently with a hope to make him wear it outside without ripping off.

Sharing a video of Sivaa wearing masks. The mask that you see in the picture is something we made out of Old clothes watching a YouTube video.

As you all know its the hope…….

Regards

Preetha Anoop Menon

Siblings story.

Siddhu starts his day describing his fantasies, sleep dreams and nightmares.I have no clue about his dreams even though I’m chosen as a patient listener. But I always encourage him with appropriate nods, excitement and other facial emojis with apt timing and response. Every dream would either start with some super humans Vs monsters or corona Vs Siddhu_The Superman.

But today it was altogether different one…. It catched all my attention and took me to the dining area. We sat across as Siddhu opened that beautiful page which had Sivaa in a major role. Both children are grown up and are self sufficient to live alone without us. Sivaa was working in Japan and Siddhu in US. Believe me friends, I was so anxious that I could hear my heartbeats. And the story continued were the brothers meet up in US for some family function and again the same corona, supernatural powers and so on and on. I didn’t bother to listen further. I was still stuck in Japan. With all my curiosity, I blocked Siddhu and I asked him to rewind to that portion in Japan to know more about how Sivaa was looking? Because I have never imagined about a Sivaa like that . He replied very eagerly that Chettan looked like Lucifer Mohanlal,Amma.. More excited than him I posed the most awaited question of my mind? Did you brother talk or how did he managed to communicate without us.. Or was he using Avaz? Siddhu again surprised me saying…yes he was… Our chettan started talking Amma. I could see the happiness in his eyes while saying that.. He hugged me tightly and I tried to control my tears which was all set to roll down my cheeks.I don’t know it was such a refreshing feel to start off the day. When Anoop woke up, I shared the story with him too. Unlike me, Anoop was more curious to know why in his dream Sivaa was send to Japan and Siddhu in US which I felt pointless to discuss and I moved off to work. Later when I called my father, I told about siddhus dream with same amount of excitement that I had in the morning. And soon my father wanted to talk to Siddhu and he also enquired about the same question as to why ‘Japan’. And finally Siddhu explained and that became an end to the story and my excitement .Siddhu said; Muthacha(Grandpa) don’t you know that my brother knows Japanese? He says Doko…noko which are all Japanese… He knows Malayalam and Japanese so he goes to Japan when he wants to work.

Sivaa speaks a few meaningful words and there are some other words he says has no meaning. It’s either because of less clarity or due to the apraxia content in his language. Every time Sivaa says such words siddhu would relate it to Japanese, Chinese and Korean languages. He watches these language movies with his dad in Netflix and catches certain words and relates to it.

Sivaa living alone in Japan is never in my wildest dreams but to see him self sufficient to carry on with daily living is a hope that keeps me going. Because it’s the beautiful hope that whispers one more time.

Stay home_stay safe is the quarantine mantra… But stay positive and not exhausted is the only survival mantra.

Regards

Preetha Anoop Menon

Good morning everyone..

These days we use this term inspiring for anything and everything. We say inspired by my friend I baked a cake.. Inspired by group of friends, I started a growing my hair and on and on. We special needs community do use this generic term more often, to reach out mother’s who are really struggling. Because in a condition like autism, there’s no common method or strategy that is set for all. We tend to trial different methods before finding a real solution. I still remember a few years ago, Siva would never spit while brushing. I tried everything told by the therapist. Later one day I was told by a mother to try ayurvedic toothpaste and it clicked. So I got really inspired by her findings. If I start mentioning those inspiring mothers, I’m sure I would miss atleast 10 because every mother in this journey is inspiring. Because behind every child who is struggling there’s a struggling mother too. I have used mother in a generic sense. There are dads and grandparents too.

To speak the truth,it’s a lengthy,tiring and a hard working process to work with Sivaa. Over the years, I have learned that if I pause and work diligently and patiently he is able to overcome those little obstacles. I take a lot of his videos. But only those success videos I post on my Whatsapp status. It would be long wait of more than a year. I never tend to inspire others. I just share my happiness. If I say verbally that Sivaa made noodles yesterday to my neighbor, she might not feel the same way as she watches his video. The video shows his difficulties and his efforts in overcoming that. These videos are more like a reward for my efforts. Seeing my status, Most of my contacts reply appreciating Sivaa and a very few people appreciate my efforts. Like that few days back I posted a video on my Whatsapp status as to Sivaa making lime juice on his own. The video very evidently points out his difficulties in putting sugar into the glass and pouring water from bottle to the cup. He didn’t spill anything. He applied the correct pressure while squeezing lemon and it was altogether a beautiful video. Many people messaged me appreciating him. Like that one of my school mate and friend messaged me in a very different way. Quoting her message down.

Really you are very good mom. I don’t have patience at all.My kids always say they want to make lime juice.But I won’t allow.I feel they are too slow… They pour down while mixing and then cleaning part….
But now seeing your posts… I feel that I must also allow them…

She’s no were connected to autism or special needs. She’s just a mom of two neuro typical boys. Next day she allowed her child to make lemon tea and had posted those pics. So to conclude inspiring can be in a very different way. Thank you dear Soumya Menon For allowing me to share this beautiful picture.

That’s the inspiring lemon juice story from Pre’s blog. Below is the video of Sivaa pouring water to the lemon juice extract.

Regards

Preetha Anoop Menon

Quarantine Days

It’s been a month exactly with no schools and outings. When school’s got closed on mid of March we never thought of this type of situation as we are dealing with.. Last 21 days of quarantine… I had to re work on Sivaas schedule and routine.. It was not an easy task to engage him meaningfully through out the day. As part of rescheduling, I engaged him in everything I do. Slowly I understood that he is capable of doing everything and anything that I can do if given proper guidance. Like Sivaa it wasn’t easy to deal with Siddhu even though he comes under the socially accepted business class category of neuro typical. Siddhu was also given similar amount of household chores. As the days progressed Sivaa too showed a progressive graph in all the activities that we started doing from Day 1. Today he can independently mix his own glass of Milo or Cup of chocos immediately after he brush his teeth. I need to only boil the milk.

For the past few days he started mixing Milo for Siddhu too. Though Siddhu is not a foodie like Sivaa, he has very bland food preferences. He doesn’t like anyone other than me mixing his morning milk. At times when Anoop mixes it, he complains saying it has milk skin. But siddhu didn’t know until today that it was Sivaa mixing Milo in his morning drink.

As usual milk was served to Siddhu and Sivaa also took his Cup. In less than a minute Sivaa finished his Cup with an utmost feeling of self satisfaction and went away from the table. As Siddhu checked the heat and had the first sip, his face showed a disappointing attitude which I completely ignored because it’s very normal. He said… Amma I’m not liking the the milk these days. It doesn’t taste the usual way as expected and he opened his 1001mistakes list. Hearing all this, Sivaa ran from the other end of the room and took Siddhus cup in his hand and drank it. Everything happened in a fraction of second and Siddhu couldn’t relate to anything as he showed a disbelieving face. I burst out laughing when Anoop also showed an astonished face.

And I explained to Anoop and Siddhu, this is how exactly someone feels if you criticize their effort especially in cooking. People who are verbal abuse and people who are non verbal like my super boy would react like this… And this type of reaction is too appealing and less energy consuming.

For those who read this, mixing Milo and sugar in milk is just a child’s play or a Cake walk, but for Sivaa it needs a lot of concentration,control, attention and motor balance. While pouring the milk from mug to his Cup, I have seen his Struggles. I knew how difficult it is for him to remember the sequence of putting sugar, Milo and milk in order.

That’s our Milo story from Pre’s blog.

Anyways I hope Siddhu would never complain again the food served to him. And I also hope soon Sivaa would be ready to prepare his own favorite dish. Because it’s the hope that says whispers one more time..

Regards

Preetha Anoop Menon

The world of neuro divergent

A story of support

School are closed for children as the state is on high alert over coronavirus. So my day starts with taking both of them to our nearby Temple. I have already mentioned about their temple visits in my earlier posts which is situated in less than 100metres visibility from our house.

The priest of this temple knows about Sivaa and his condition and keeps assuring me that Sivaa is going to fine, as he see a tremendous change in him during the past 7years. Even though I had accepted the reality, his hope in Sivaa reassures me during every difficult times. I have always noticed that this priest tries for some sort of communication with him. When most of the people try to ignore our children, every little attempts to acknowledge our children gets counted for as inclusion and acceptance. Another speciality about him is that he has never asked me to do any special poojas for his well being. The only thing that he had asked me was to bring Sivaa daily for Devi darshan.

As mentioned earlier, every time the priest would take an effort to open a conversation with him. Like that today he called him to take the Prasada ( temple offerings). And as I saw Sivaa walking towards him, I was very anxious but after attending Seema’s ( Seema lal TogetherWeCan) parental support session I learned to ‘let it go’ the situation which was beyond my control. As I watched, Sivaa went near and stretched his hand towards him. He gave the Prasada and one little bottle in his hands. He screamed pacham(payasam) and ran to me. The priest was so happy and overwhelmed with moist eyes he blessed him saying Devi would definitely hear us. Equally overwhelmed I prayed for his well being and came back home. The priest added that he never expected that Sivaa would turn up and listen to him.

I was anxious because I thought Sivaa would drop it down which is considered a sacred thing. I was also anxious because I thought Sivaa would by mistake touch the priest. But I learned that anxiety sometimes would end up losing my sanity.

Anyways Sivaa is happy for the surprises that he received today. He is jumping and running around the whole house thinking of the holidays and surprise pacham.

The temple mentioned here is a small Bhadrakali temple named Mukkottil Bhagavathy Temple in Tripunithura. The Neypayasam is the main nivedhayam to Devi.

Regards

Preetha Anoop Menon

Sportopoliz as the name indicates is a football coaching center in Cochin. But unlike other centers it’s an inclusive set up where specifically trained staffs are providing coaching to our children by focusing communication and socialization as the keyword for building any phase of development. The sessions are held by a sports coach who is immensely trained in dealing with our children and a well known speech therapist for removing the child’s communication barriers. For the past few months I’m sending Sivaa to this place.

Why did I choose Sportopoliz?

Its definitely not because Sivaa liked football nor his favourite toy was ball. The first and foremost thought that came to me when I heard about this was definitely play. Sivaa and Siddhu has no friends nearby and they donot get any chance to run and play. I know Sivaa loves to walk and run in an open space which is a rare scenario in towns and I also knew my son loves to sit in grass and open grounds and enjoy the bare sky. And I found and understood that spotopoliz is the safest( with fences and nets all side)and calmest place as its not in the busy outskirts of the city.

What do Sportopoliz do?

They are focusing mainly on pre skills like running and chasing the ball on commands, throwing and catching the ball and turn taking skills etc. Which in turn improve joint attention and eye hand coordination and many such other skills like gross and fine motor skills.

My expectations from Sivaa and his sports class.

Since Sivaa is non verbal I’m assuming that certain things may work and certain other things maynot. So the first and foremost thing that I expect from him is that he should be happy through out the session. Secondly he should be able to complete the given task with or without prompts. I don’t expect him to be perfect or to come first. Siddhu seems very sad that his brother never wins the running race. But I’m happy when Siva runs from one end to another. I’m happy when he does an exercise and holds it even for 5secs. Im also happy when he makes an attempt to do a given task because I know that……. Yes I know that…. One day….. Those stepping stones that I built in him makes him more strong and steady that he wins the race 🏆⚽⚽..

It’s the beautiful hope that whispers one more time…

Regards

Preetha Anoop Menon

Last week Siddhu had an ankle sprain after a fall in the play area. Even though his X-ray were normal with no dislocations or cracks, we booked an appointment with an orthopedic to ensure whether the boy would be able to Dance for his annual day function at school. As Anoop wasn’t available at that particular time, I had to take Sivaa also with us. From the parking to the op block, when I carried Siddhu, all those scary memories of baby siddhu on one hand and little Sivaa on another flashed through my mind.

I didn’t want to get lost in that to which I started talking to my children. We three got seated in front of the doctor s room as we continued our jabbering about irrelevant topics. Sivaa was anxious and overwhelmed that he was non stop fidgeting, shaking and rocking in his chair. I didn’t bother to interfere as I understood that it’s his anxiety seeing a different doc(not a paediatrician) that too in a different place.

After a while I saw two young men’s staring and pointing at Sivaa and was continuously mocking and laughing at him as though they were watching a comic show. But I don’t know why? I didn’t have the energy to react or respond to them. I tried to ignore.. but soon i started feeling so humiliated that I asked Sivaa to get up from that place as I took him for a walk. I told Siddhu to wait until we come. I left the X- ray prints with Siddhu. I tried to explain to Sivaa what was happening and that it would get over in a couple of time.

As we walked back to the place, I couldn’t see Siddhu on his seat. I panicked and ran to the place pulling Sivaas hand. Siddhu was no were around. I looked at the old lady who sat next to Siddhu, she gestured towards the doc’s room. I pushed upon the door without knocking as I saw my little boy explaining everything to his doctor even showing the X ray that he had. The nurse showed a disappointing face on to me for my irresponsible attitude towards child. I could feel the tears running down my cheeks as no body explained anything to me. Rather I failed to explain my part…… Siddhu happily said; I can dance Amma… I hugged and kissed him saying I’m proud of you dear…

As we moved on, the nurse came closer to me and whispered… Take good care of your children. I felt lost at that moment. I was thinking like I’m trying hard…but…Oh God..Am I not a good mother? Am I an irresponsible mother?

As I came back home I realized that I had tons work to finish with zero energy. I even didn’t tell Anoop feeling guilty myself for bad parenting. Next day I realized that this is how life is and how it would be going forward. Then why did I write this? Just to pen down that the colours you see in someone’s life are sometimes the one they have created for a shorter period of time. Life can be sometimes colour less too.

Journey through the life of autism.

Life of siblings

Life of autism

Regards

Preetha Anoop Menon

Unlike the previous years we didn’t have much plans and trips this vacation. We spent most of the time at home. As all the other physical activities that Sivaa goes for were closed during holidays,we had a lot of time in hand with less number of activities. We did skating as usual but were left unspent the other period of time. But then also We managed to met a lot of people and many joined us home for a coffee.

As you all know whatever we try to do, it would be difficult to manage them the whole day without any scheduled type of activity. My boy managed to adjust so well with all the uncertainty but at times he was anxious and excited reminding us that he is different and needs time to cope up with.

As part of learning his daily living skill, Every alternate days when the boys clothes were washed, it was their duty to fold it and keep it inside the wardrobe. For Siddhu everything from sorting his clothes and folding and keeping it in the appropriate place just came up at one shot. But my neuro divergent needed prompts for even sorting his own clothes from the Bunch piled up. But as days progressed I began to see his confidence increasing as he became less and less prompt dependent. Today I have taken a video in which he is folding his trousers independently. I felt so happy for him and his changes. A change itself is a growth.

It doesn’t mean he has achieved the skill of folding his clothes. He needs prompts for sorting and segregation and also physical prompt for folding shirts. I hope by summer vacation he might attain the skill. After all……it’s my hope that keeps me going.

Let’s hope for the best.

Regards

Preetha Anoop Menon

Let us be able to climb the steps though slowly but steadily.

Let us meet and greet more and more people than centre’s.

Let us be welcomed by our friends, family and neighborhood.

Let every mom gets one person to share her anxieties.

Let every mom get a shoulder to lean on and wipe her tears.

Let every mom gets a METIME to celebrate in her own way every day.

Let every mom to a non verbal child gets a magic chip to read her child’s mind.

Let every sibling to a neuro divergent shout out to the world that It’s OK to be Different.

Let she never repeats that rollercoaster ride this new year upon receiving that emergency call from school.

Let her day ends up with a peaceful note and prayers for her child.

Let this world be more transparent to accept and include the diversities.

And Let our child Tarun reach back home safely to celebrate this New year.

Let us be more humane this year.

Oh God…Let this New year be an era for celebration of diversities.

She hopes for the best…

She understands that it’s her hope gives the inner strength to take a second chance.

And Let it go… Let it go from her mind… the thoughts that disturb her harmony…

Embrace the differences.

Regards.

Preetha Anoop Menon.

When I write this note, I feel like I have reached the sky. Yes I mean it..so happy to share that my Sivuu has started doing the buttoning independently. Friends don’t get surprised when I say he learned the skill at 11. That was he and his fine motor difficulty.

He was able to unbutton the shirt a year ago but needed prompts for buttoning the shirt. I remember loosing my temper several times when my hands ache while doing the physical prompt. But soon realized that when I loose it, his anxiety shoots up and he wouldn’t be able to do on prompts either.

How did he develop the skill?

There’s no easy method or pre skills that helped him. I would say consistency is all that matters. By Pre skills I meant I didn’t buy any buttoning board to develop in him the idea. I don’t know whether his school was doing that but at home we just practiced everyday wearing his school uniform. It used to take more than 10 minutes with prompts to actually finish the activity. Sivaa is sometimes a kinesthetic learner and shows positive results if provided time.

Understood his fine motor delay

Siddhu his neuro typical brother started doing the activity at the age of 3 or so and I remember that triggered me to practice the same for Sivaa who was then 8 years. When I started the activity three years back, Sivaa wasn’t ready to even wait, or hold the button or look in to the holes provided. That time my only focus was to make him patiently wait and understand the activity that I was doing for him.

Today when he buttoned his shirt on his own, I clapped and hugged him with utmost joy to which he smiled rocked and stimmed with his hands back to me. I could very well relate to his happiness and it was like my boy saying to me that. I did it.. Amma.. Finally I could do it… 😍🥰😘

Unlike Siddhu, Anoop is not a great person to share such exciting moments. When I called him to share my happiness he came down from upstairs anxiously thinking I had fallen down somewhere and got hurt. He even scolded me for screaming like that…🤨😉😄

Anyway I’m waiting for Siddhu to be back from school to share my joy.

Selfie time with Sivaa ( to imitate what Amma was doing) He managed to do it this way

Regards

Preetha Anoop Menon