Mom’s it’s for you

Hello Moms

It’s been a long time… Indeed a long wait to connect with you all. Pandemic is driving me crazy. Hey please don’t scroll down… You can read the next line. It’s not an inspirational story. I know it.. We all are tired reading inspirational stories. Also It’s not about autism nor neuro typical.. Its not about Sivaa and Siddhu (The inspirational siblings duo) 🙄.. It’s not about children at all.

Also..its not about any new methods or strategies that I tried to keep me going in this pandemic. Oops sorry…Like everyone of you.. I did a try a lot of new things last 11 months.. From exercise to yoga.. from meditation to Surya namaskar… From cooking to baking…. From indoor planting to total gardening.. From long drives to music therapy… From inspirational quotes to hearing A R Rehmans singapenne song to awake the singam in me. From temple visits to chanting mantras from straight lines to actual paintings and home decors.. And the list goes on..

It’s not about anything mentioned above … It’s just to remind you all mom’s that you are the best and you deserve the best. Do what your mind say.. I know it’s not easy.. Moms…please do take a deep breath and listen to me. It’s absolutely okay if you don’t work with your children today, tomorrow and even day after..Take a break… Believe me nothing is going to change. And nothing is going to get worse. It’s true that If the child isn’t engaged a day or two behavior might pop up but don’t ever feel guilty for his behavior. You are not the cause for everything that’s happening around him.

Try to live a stress free life. Do not take everything onto your shoulders. Believe me your shoulders aren’t that strong.. You aren’t a super mom. And if anyone calls you by that name…just thank them and release it through your right ear. Upon God’s sake.. Please don’t take that word super mom to your head. It’s absolutely of no use. Infact there begins your Stressful life.

Also do not try to fit in a place if you are not comfortable at any point. It’s absolutely okay to let them know your opinion. Most of us fear the thought of walking away from a person or place where we get totally drenched or drained out because it was all these years considered a normal routine of your life.

Mom’s it’s absolutely okay if your friend or a family member put forward any ideas or suggestions that they think would work with you and your child. If you didn’t like it..just ignore and walk away. You don’t need to argue or respond to everyone and everything. The only important thing that you should always worry about is your mental health. Your inner peace…

Please do understand that you are not for everyone and that’s okay. Talk to the people who can hear you and can understand your journey. It’s very essential that your time and energy is something very precious for your inner peace and it’s not to convince anyone about your value.

Yes…we all are strong and what make us the strongest is finally the decisions we make to keep it going without loosing one’s spirit.

With lots of love and prayers

Preetha Anoop Menon

Our Pedalling story..

It was a long wait for us to see Sivaa using cycle meaningfully. The first tricycle was gifted to him at the age of 3, but he never used it. When we were in Coimbatore, every evening I used to carry his cycle down to the apartment walk area and I make him sit and try to teach him do the pedal movement. He would sit for less than a minute and would run to a place farther than me and I end up carrying his cycle everywhere he runs and jumps. Even if he sits, I have to push him and even if I push he would never pedal it forward. The cycle would move in the pressure I use to push it forward. And thus the tricycle story ended up there and when he became 5, his diagnosis started ruling everything and soon on expert advice and our research study on autism, we bought a bicycle for Sivaa with side wheels.

This time we were empowered and confident for the second trial with Sivaa. But within no time,We failed drastically in that attempt too as he showed less than 1% percent interest. He couldn’t get the idea of moving forward.

When Sivaa was 8 or 9 years, one day I happened to see him sitting in his old cycle and was trying to move it. Soon I accompanied by little assistant tried for the third time, but soon Sivaa stopped going to that side where his old cycle was kept and also tried to pull it down every time he sees it. The idea of pedalling forward wasn’t really getting to him. Pushing him all the time like the way we do for other children didn’t work for Sivaa because when we push him,he won’t pedal the wheels as his part. We tried alot but nothing worked out. I have seen a lot of children in the spectrum using cycle and was upset as it didn’t work for him.

One day I happened to read Addus cycling journey in which Smrithy had mentioned about using Gym cycle to teach him pedalling forward. That idea of her really shook me to start our cycling journey with Sivaa again. Two years back we bought a gym cycle for Sivaa and a new bicycle for Siddhu. I still remember how I taught him to pedal forward. I would sit down near the gym cycle and I would use my hands to show him how to pedal forward. In the sense I would pedal the cycle with my hands as he would be sitting in the gym cycle. Gym cycles have a lock system. He cannot take his leg out soon, once we place legs inside that pedals. After 10 such trials he learned that movement, but at times he would pedal backwards.

We started by counting his forward trials, like we started with 10 counts a time, but I made sure that he pedals it forward. Any backward pedals were left uncounted, so to finish the activity he had to count it forward. I had to concentrate only on forward pedals and nothing else. The constant position of the gym cycle made it easier for us. Now he rides gym cycle every morning for more than 2km.

Soon after this lock down period we bought him a big cycle with support wheels for the final fourth time. But by this time, Sivaa had acquired skating balance and we were far empowered as to how to work with Sivaa. To our surprise this time started riding it meaningfully. He learned balance soon. Now he is able to ride with one support wheels. Anoop takes charge of this too but he doesn’t have to run behind him like how he did for skating. Anoop removes the side support wheel to the right and left sides every week. This way he is learning to get balance on both sides.That is one such trick used by his father to teach him balance. But It can also be the skating balance that might have helped him gain balance in cycling too. We don’t know that.

So to conclude;

As stated earlier, I have seen a lot of children in the spectrum doing cycling. But for Sivaa this wasn’t easy. We tried a lot many things to make him pedal. But all our effort was in vain until this time. We never thought at this 11th year he would start pedalling. So my intention behind this blog is simple. Mom’s who haven’t tried… Please don’t regret about it. Learning can happen at any age. Now stores like Decathlon have many amazing cycles for special needs. And to those mom’s who have tried their level best and is in a state of denial…please don’t give up… If Sivaa can… Your child too can.. So don’t loose hope.

Stay safe stay positive…

I will be soon coming with a video of Sivaa cycling without any support wheels. I know we have a long way ahead but I like to jot down these anecdotes from his life.

Regards

Preetha Anoop Menon

He is my brother and not God’s special child…

As the boy grows up his questions and doubts about his special brother increases. Since Siddhu is too small to understand autism, I haven’t mentioned anything about it so far. Like any other mom, I characterized Sivaa as God’s special child. But you know the children nowadays keeps on questioning us until they get a clear understanding of how, why, what and when.

One morning Siddhu came up with a very valid apprehension as to what makes his brother special and how he is God’s special child.I was finding it difficult to convince him with any concrete answer. When I exaggerated about how his brother swims and the stories related to it, he replied that it’s because Chettan loves swimming Amma and there’s nothing special in that. And when I told him about how his brother learned skating, he paused me and said.. Amma I know very well how my poor brother struggled to learn that, don’t make it special. He also added a question as to how his brothers struggles be categorized as abilities . I was speechless. Yes…. he was true. I slowly realized that he isn’t my little Siddhu who believes every fantasy stories that I read to him. So I didn’t dare to mention anything about his other skills or learnings

He continued as I understood that he wanted to pour down his intuitions.. There’s nothing special about chettan. He is just an ordinary boy like me. I interfered and asked him whether he envy or feel little jealous towards his brother. He jumped up from the seat and showed an angry disapproving face.He said.. I’m trying to tell you that Sivaa Chettan is my brother and not anyone else brother and Chettan is your child Amma and not God’s special child. He is one among us and not an alien. He is just a slow learner, also he is very hardworking, innocent and intelligent boy like the one in the story you told me the other day. Sorry Siddhu… I don’t remember that Story. Hearing that he got really disappointed with my attitude and went away. Between its so nice to see him getting angry. It’s so heartening to see him raise his voice for Justice to his brother.

I think Siddhu has a very valid point here. When you characterize a neuro divergent as a special child, we tend to pause and start searching for experts to deal with them. We spend most of our time searching for expert opinion forgetting that we are their experts. This pandemic period helped me to understand more about him and was able to spend quality time together. Now I feel I’m in the seventh heaven when Sivaa calls me Amma often.

P.S Every child is unique, special and is God’s gift. And the magic to mould them to a beautiful creation rests with the Mother. So don’t delegate that power to someone else.

Regards

Preetha Anoop Menon

How each member of the family play an important role in raising a special needs child.

This blog is specifically written to ensure the importance of each member of our family in upbringing Sivaa. A few weeks back I remember how Anoop got little irked when everyone gave that little attention to me when Sivaa started skating on his own. He was the one who worked with Sivaa. He did a lot of tricks to make him get the balance. It was a tiresome process for both of them. Apart from all that I feel it’s the consistent practice that made all the difference. Whenever Anoop was out of town, I used to be his coach. When Sivaa got balance and was doing it himself, we planned a schedule accordingly. All these years we worked on something or the other but Sivaa wasn’t ready to cooperate.

But as we moved on to our new mission of making Sivaa balance cycling from last Saturday, Little Siddhu wants to pedal the same time. I scolded Siddhu for pedalling ahead of Sivaa out of my fear that Sivaa might loose balance and fall down. For Sivaa if he looses confidence in some thing, it’s very difficult to bring him back to initial stage. Siddhu got upset very soon and he stopped pedalling and went inside. I was so engrossed in Sivaas pedalling that I didn’t bother to it. After some time I saw him doing skating. Siddhu did skating for sometime and got himself ready for the online classes.

After the online class he came and sat near me, as I explained a few Ramayana stories to him. While explaining the story behind Ravanas ten heads, he immediately asked me something which was not related to the subject. He asked me as to why did I scold him? He didn’t let me answer…he continued… Do you know how chettan learned skating? Do you know how he learned the tricks so soon? He was getting very emotional in between but he continued … Seeing me doing he learned.. I used to skate ahead of him and show him the tricks. I was planning to do the same today. But you didn’t allow me.

That was actually true. When we started skating for Sivaa, we started for Siddhu too. Even though Siddhu learned soon, he used to practice during the same time. I remember how Sivaa would start crying when siddhu finishes his rounds and get inside. Realizing my mistake, I apologized to Siddhu and promised him that next day onwards they will be cycling together.

I know Siddhu plays a very important role in everything that Sivaa does. There bonding as of now is beyond explanation. Siddhu is always the best advocate for Sivaa. Even though sivaa breaks all his toys and some of which we never could replace, Siddhu forgets as soon as Sivaa says sorry. And Sivaa uses that word only with Siddhu. And even while doing paintings too I have seen Sivaa having a look at siddhus work. He doesn’t cooperate well if Siddhu is not there. And Siddhu became every happy when I told about his role in making Sivaa paint as well.

And thus we moved on to the squirrel story from Ramayana which highlight the significance of a small animal in building up the bridge across the river.

Apart from all our little efforts, willingness of Sivaa leaving aside all his deficits to join our hands make us feel the existence of almighty in healing process.

No one is supreme. No one is less.

Stay home, stay safe

Regards

Preetha Anoop Menon

It’s a bread making story..

June 21: International Father’s Day

Instead of sharing pics on social media, this time I thought I should spend some quality time with my father who is living all alone in his house. Bread baking has become my new passion and I decided to bake a bread and surprise him this Father’s Day.As you all know Bread baking is a huge process and requires a lot of your attention and not less than 4 hours of your time. Giving the utmost attention and care needed at all stages I baked a soft and fluffy white pullmans bread.Since it was for the special man in my life, I never wanted to take a chance or a compromise as to its shape. Pullmans bread retain it’s shape. I even brought a bread knife so that it’s shape is regained when compared to the original. Everything was perfect according to me. I was so proud, happy and excited thinking about all the attention that I would get from Achan for baking a beautiful loaf.

While driving to his house, I recalled those beautiful memories of making chappathi for Achan the first time when Amma got transferred to northern part of Kerala. The taste that he found in my Hardo chappathis was difficult for me to figure it out at that time. Later I saw a version of him in Anoop who finds a beauty in everything that our children does.As days passed by, his tastes,preferences and aptitudes changed drastically. As a symbol of getting older, he suffers from appetite loss and a very sensitive stomach. Keeping all this in mind, I didn’t try making a side dish for the bread. I just filled the slice with a thin layer of Jam of his choice.

The moment we reached his house, Siddhu was trying to connect with him saying Amma has bought a surprise for you. He was so engrossed in his social media and the debates that was happening, he didn’t bother to listen to him.In between I also prepared a tea to give along with it.

And finally I gave the cup of hot tea and my bread slice nicely cut in a triangle shape and neatly plated to him. I waited for the results as he took the first bite like a Master chef India contestant. I was so anxious as he moved forward for the next bite. He didn’t bother to comment. I couldn’t control my anxiety as I was clueless as to what went wrong with my bread. As he finished the whole slice within a few bites, I offered him one more slice which he refused.I couldn’t wait for more… I decided to break the silence. I was sure that it was definitely a qualified piece as I saw my Sivaa went on and on with more and more slices. Sivaas taste buds are so strong. He could always sensitize a stale bread. And moreover it was baked in the morning.

I left my plates in the sink and went and sat near him. He was watching news. I interfered in between and very gently asked him. Acha did you like the bread I made for you? He gave a very puzzled look and continued… what’s there to make in it. I couldn’t wait to hear more… What???.. I couldn’t believe… Was it from my same old father who used to like everything I make?? He continued…You bought a store bought bread and applied jam on it and gave to me.. I didn’t wait for more explanation and clarification. He could relate to it with a store bought bread itself made me feel so happy. He continued with his new research on Covid 19 as I moved on to my next activity.

Happy Father’s Day Acha…

I know I couldn’t cherish any of your dreams nor I could fulfill my duties as a daughter…..still I wish and I hope one day I will make you so proud of me.

With lots and lots of love..

Regards

Preetha Anoop Menon

My personal rants

I wish to go back to normal..

Hearing the sound of my routine boy, I realized that it’s time to wake up, I wished to get that extra hour inside my quilt.

Oh.. He pulled my pillow down and ran, yes….it’s my final call..I jumped up from the bed to keep things back to his normal.

I could have slept early with him…but to tell you the truth..Now late nights have become my only ‘me time’.

I can feel the heaviness inside my head.. Yes it’s the same sleep deprived state.

I did those daily errands like a machine and I was all set to refresh myself with my morning cuppa, my little one woke up and clung on to my side.

The days are running … I don’t know for what and I’m left with no time to even comb my hair.

My priorities changed… My routines changed… But don’t you think that I should get my space.

No is the word I wish to shout out to everyone….but like by non verbal boy…I’m left with no choice..

The sudden role change from a mom to a cook, a cleaner, a watchman, a teacher, a trainer and therapist is kicking me down.

My heart says take it slow…. But if I slow down, will I end up with no breathing space.

I’m juggling between one activity to another till 9pm, and you collates my late night baking as a leisure time activity I might lose my cool… So beware ahead.

To the lady who measured my work less as to working women, I really wish to scrape on your nose with my new bread scraper.

The urge to spend some time in temple and those quality time with my friends has become my wildest dreams

When will I go back to normal?

My 24hr smudge proof lip paint will soon become a colour in my sons Dot Art painting.

My new loafers thought I’m dead.

And maybe for the array of wristwatches I possess ,I’m bedridden.

I wish to go back to my days of long drives with soothing music playing..

Yes I wish to go back to that normal.

Regards

Preetha Anoop Menon

The true side of his paintings.

Yes… it’s all about his paintings. As I wrote in a previous post, we have been doing different activities with Sivaa these lockdown days and it also includes painting. As Sivaa shows a positive sign when it comes holding brush instead of pencil, we have experimented different aspects and avenues in paintings. We have shared a lot of his paintings among friends groups and even in Whatsapp status. Like any mother, I was so overwhelmed and excited seeing the responses that I received from people all around. Indeed I’m blessed with lot of good friends who always encourage us in this journey through the life of autism.

Also being a mom who’s always open about her journey, I thought it’s my duty to share with you all the true side of the pictures you see as his paintings.

First of all, I wanted to Share with you that Sivaa cannot draw anything. The drawings that you see in every picture would be either done by me or by Siddhu. Thereby we select pictures which includes more painting and less drawing.

Secondly it’s not his idea or creativity that is depicted. We just try to replicate the you tube videos we watch or any art and craft sessions we see in fb like Evoluer. From Evoluer sessions he has learned to use different techniques while painting. Thanks to Shaloo Sharma for that wonderful presentations.

There are lot of questions that people ask me with regard to his painting. I’m sharing that too here .

Whether Sivaa chose the colour to his paintings?

It depends. Some simple paintings he chose colors while some others we just replicate the same thing we watch in the video.

Will he patiently sit to finish the activity?

Definitely a big YES… This is something which motivates me to continue with this activity. I’m so happy when I say this. He is calm through out the whole process. I think Painting is therapeutic.

Do you guide him?

Yes like in every other activity, I guide him in this activity too. But the difference is that while doing painting, he is doing it wholeheartedly. Unlike the other activities he doesn’t need continuous verbal prompting. Actually it’s very nice to see him painting, the strokes that he makes are either feather touches or circular motions. But you can see him fully engrossed in to it.

Will Siva verbally demand that he wants to do painting?

The answer is No…. He doesn’t communicate that. Initiation is always from my side but I think he has all the right to refuse it like how he does in any other activity. Since he is not refusing it, I presume that he likes it.

Also When I speak about his skills, I become little emotional as it takes me to a few years back when he was 2 to 3. He used to make amazing things with building blocks and clay at the age of 3. And it was the only toy that he plays with. Every month when Anoop’s salary gets credited, he comes home with a new set of building blocks for Sivaa. We thought he definitely had a skill in that area. Soon it disappeared and he started throwing blocks and eating clays. So I think we should not combine skills and learning.

I would also like to add that since Sivaa does painting, we are not fully in to it, like every other activity we do painting on alternate days. And I think it’s too early to decide on whether it should be developed as a skill or not. It can also be temporary like his obsession to building blocks. If you ask his teachers they might have a very different story as regards to his paintings. I have heard from them that he messes up with paints.

So that’s all about his paintings and before concluding let me also mention that sivaa cannot inherit painting skills genetically from us, because Anoop can’t even draw a straight line or paint a triangle and I might draw a star but if I paint, I would end up tearing the sheets.

Have a look at his paintings

Regards

Preetha Anoop Menon

Sivaas skating journey

I’m proud of you Sivaa… Said Achan.

Little Siddhu came running to me and told that Achan said like you that he is proud of chettan during skating. When I work with Sivaa I always tell that I’m proud of him. When I say that he looks in to my eyes and smiles.

Sivaa grabs all the attention from his father for being the first bundle of joy and for reciprocating a lot of his paternal grandfather. Moreover Sivaa s first meaningful word was Acha unlike other children. I have always mentioned about the loving bond between the father and the son in one of my earlier posts. And when Sivaa was diagnosed at the age 4, I have also witnessed my husband’s depressing stage which made me more stronger as a Woman.

Due to the nature of his job, Anoop had never got a chance to work with Sivaa.Skating was the first such experience for both of them. Sivaa has grown out of my hands and I couldn’t control him. Skating is such an activity which needs utmost supervision at the beginning stage. So to begin with Anoop had no choice other than to walk with Sivaa. For the first two days I acted little naggy and would pressurize both to start off with the activity. After a week, I could see Anoop becoming more and more motivated to work with him. He began to cherish and embrace the little achievements that Sivaa does by applauding him. One such day he also told Sivaa that he is proud of him. Yesterday he even scolded me for not paying enough attention when Sivaa was skating a little bit without help.. Which was actually far beyond my eyesight. When they started skating activity , It began from our porch. Then he took him to our walk way and slowly to that full Lane. Today he wanted to take him to the road. And that prompted me to write this post.
When we start working with our kids, it’s like that….we become more motivated, more energetic and more positive…. And I also understood that when we try these things consistently on our children with so much of hope and aspiration the whole society would cherish those Moments. That neighbor uncle I have mentioned in my previous post has so much relevance here too. He would walk daily to open his shop during the time Sivaa skates. He was happy seeing his improvement and showed an approving attitude towards our dedication. Another lady who pass by daily at that time told me one day … Wow.. he picked up.. I thought she was mentioning about Siddhu who learned the skill in a day but she was pointing to Sivaa which made me more happier because it’s an appreciation to our efforts.

But that doesn’t mean that I don’t cherish my little one’s achievements. I’m immensely proud of that little boy who takes care of himself so well with us in this journey through the life of autism

Musings of a Mom not very special

Yes I’m not a special mom.. neither a super mom.

I wish to be one among you.. I would like to gallop as fast as you do.

I always try to imitate the normal but never could find a space with you..

And you call me supernatural… I don’t really understand what you mean by that..

I start my day prompting my son to start off with his day in the hope that once in my life time, he is going to get it all.

And you say I’m inspiring without knowing that I’m just trying to catch up with you…

I knew and I’m sure I learned patience working with my son. It didn’t come to me as a blessing. So please don’t call me special..

To tell you the truth I had no choice, if I loose my pace and patience, my poor boy fumbles

Some days I get exhausted just by thinking too much and Some other days I’m so tired doing too much.

To all those who sees us, we are those active, cheerful and inspiring mom’s.

But you Know, we were those slothful lots once, who found excuses for anything and everything.

Now I’m forced to learn and experiment new things ,with the hope that one day I may get an entry to his world.

I have never thought I could bake garden or paint… But now for me all that is therapeutic..

You may see me trying everything or you may think I’m an overdoer and that’s absolutely OK.

With no intent to inspire, I carry on with my work everyday, just to see that beautiful smile which heals all the pain and exhaustion.

I may seem to you playing cricket, football and basketball with boys every evening,

I have no clue about its rules, I just play to have some fun with them.

It doesn’t matter to me what others think, nor I feel a super woman in me..

I just play with boys to ensure that my hyperactive son’s energy is all drained out.

Do never think that I get only positive comments for my actions… not true

Its only the positive side I wish to Spread..

Yes.. I have been belittled by people ,but they forget the fact that my wings are stronger.

And my visions are clearer.

Quarantine series…

(Written on the context when people started believing that all moms of disabled children are super womans).

Regards

Preetha Anoop Menon

Have you ever thought of a world of nonverbal

Being a mother to a non verbal boy, I was always anxious and curious to know his world. I use every opportunity to get into his world but was never consented. Today when everyone was so engrossed in their devices, Sivaa took his iPad and started using his Avaz app. When everytime this happens, I would run to him thinking that he is communicating but all those times he would leave the device and run away. Today I was bit on a low mode and was not in a position to get up and check with him. Also if he really wish to communicate me ,he would come with his iPad. Seeing me not responding, Anoop went to him and checked out, he saw poratta and beef curry in the end and thought he is desperately missing his favorite cuisines. And I also witnessed some lovely conversation happening between the father and the son regarding the food.

Coming to the topic, we are so exhausted and agitated with this prolonged lock down and unanticipated condition. But people we are so able to talk, write or express somehow our anticipations. But what about these kids? Are they facing this lock down a way before without being able to express oneself and always being subject to be judged by others. Being non verbal are they forbidden from Article 14 of Indian constitution.. Certainly not? Then who’s framing them to a world of segregation??

I’m sharing Sivaas recent chat history from avaz App. As I mentioned he wasn’t communicating with three of us. Maybe he was self stimulating… Just listen to that. He has used several words like in verbal communication. Instead of using just for his needs, he has opened up a lot. It seems like he is missing his skating and swimming classes. He wish to go for a walk. In between he has added, he is not well. He is feeling sleepy and tired. He is self stimulating by saying I’m fine and thank you and take care. And finally as Anoop says he is missing a lot of cravings. All these conversations happened continuously one after the other and it lasted for more than 15 minutes. It was non stop and that’s why it catched Anoop’s attention. He was touching one after the other continuously.

I wish that like today,I get more days and opportunities to understand his world because I’m not able to imagine a world of him without talking or verbalizing by any means. If Its too hard to imagine and won’t that be too hard to live like that.

Still my warrior… My beautiful child starts a day with a beautiful smile and follows me in all his steps without regrets. He adapts so well with our changes and anticipations. Even during these lockdown, he hasn’t troubled me any single day. When rest of the people in the house including his little brother say frustrated and exhausted every single moment,he is carrying it all with a beautiful smile.

I wish let his voice open one day.

Regards

Preetha Anoop Menon