Autism awareness month - April 2017 - thanks

Dear all,
Our Hari is showing so many good improvements in the past year.
Thanks to God

Everyday I think  about Hari on his next steps,what's right  and wrong? what is the new concern that hinders his growth and how to solve?
All of a sudden,  a flash of thought would strike me ,and come to help address the concern.I believe that is God send .
To my lord please be around us as always and give us your strength and  blessings.please bring a cure to autism and disabilities.

Thanks to Ayurveda 
I feel , consistently it is moving him forward.
Hari's is eating new food - apple,grapes.His listening is getting so good. He can understand 99% of what you speak.
He started spreading his play outside family.
His learning academics started this year, understands most concept- color,shapes,big and small,long and short,more. And less.He is natural to spelling and acquiring new topics, concepts.
He understands emotions,actions,so much more
Thanks to my Aba team
Most lovely therapist- genuinely willing to help Hari ,understand his hard days, help him every hour.
Thanks to all my lovely therapist, to make Hari play,talk,learn  and for  loving him unconditionally.
Thanks to my speech

To move Hari from sound to sentence this year. That a very big leap .without you it could not have happened.specialthanks to open me to try RPM.
Thanks to my OT
To help Hari to place where he  can attend,track,focus and respond with in a minute .Hari started to write letters- 5 of them.He can color,cut,starting to read.he can play iPad games, choose his video in YouTube.He can play catch,soccer and more.
Thanks to open arms :
Hari's new school open arms is so much more than a regular school .Honestly they had teachers who open arms and heart to receive Hari into their class.hari is around big group of lovely kids, 18 of them who play,treat him so normal and hold him,talk to him and help him on his rough days. Most of all there is no pity , there is love and encouragement.
He is part of a team in their physical education,Spanish music, story time,art and craft.Special thanks to special ed teacher and my shadow therapist Emily.
Thanks to my speech who help harshitha to play with hari.

Finally to our friends ,
For being with us through last three years and into the future.
I am excited to see what future brings to our family and yours through Hari.

Thanks all from Hari,Harshitha ,Anu and Prashanth .

Hari at 6

Its been a while since my last update on Hari. 

Ayurveda:

Most of you know we tried on Georgia based  DAN doctor, and most vitamin based treatment, B12 shots, probiotics and few more medicines.We did not see any improvements with respect to all of above.

Still time after time research emphasises on gutt/gastro intestinal lining getting affected, food sensitivity and intolerance to milk/wheat on most kids with Autism spectrum. So we don't want to give up on diet or alternative medicine approach. But this time we want to try on Indian traditional medicine just to keep it safe and minimize any bad side effects.

From January 2016 we are giving Ayurveda based internal medicine, 6 times a day.On a long run they said it will  help him heal inside out.

Improvements : 

1)Hari was a very picky eater before, now he is trying new food little more comfortable.

2) Speech: Last December, we took Hari for re evaluation with Coleman therapy center as Hari's speech did not improve as much as his receptive language or learning in other areas .We started on motor based approach to help his speech and language.

First few sessions in new speech place - Hari can produce most sounds m,n,b,p,g,f,even he tries L,S which are considered as tough sound. She is keep on motivating him and push in a playful way to try producing words/sentences through IPad app. Hari enjoys her session, giggles and even fights with her.

One big change she brought into our family to take with us is Attitude. I was surprised how she treats him so so normal .He can repeat most words/sentences. He is still working on making it more audible/clear  and more independent.

Hari is using with minimal help to say 

1) I want ...2)Give me more 3)pick me up 4)my turn 5) I don't want it 6) Yes/No 7) open/close the door 8)lets go home/out/up/back yard 9) push me fast(swing) 10) take off helmet 11) trot/walk on 12)play with me. 

WE are working to improve more functional speech,independent and more initiative with other kids/adults outside his therapist.

He gets little scared around other kids as they come close so quick .

Also she added one day after speech that she wanted to try RPM on Hari. She thinks Hari is speaking less but he thinks and knows more in his mind than what I and ABA therapists give credit for. So recommended to read about RPM AND START TO DO little at home. I was little reluctant initially thinking she is too positive, but she insisted after every session and told me to read and know about RPM.

4)RPM:This is a method developed by Indian woman named Soma to help her boy 20 years back.Its as simple as children spelling their thought /answer on an alphabet stencil board. Mostly used to teach academics, eventually many children use to communicate their voice through spelling. After lot of confusion, thinking how many new method/approach/intervention can I try or adopt to help Hari, started reading books about RPM. I started to learn and do small session to Hari weekly 2-3 times. He is doing good but struggling to sit, gets super hyper whenever I do.Almost I want to give up or frustrated/upset/sad  even now, but something in me is still trying.

1) Teach and Ask method - ex: Penguins live in antartica

Asking Hari : Did I say Penguins live in     

   antartica or cardboard 

  writing on piece of paper, giving choices, spelling the word and offering pencil to initiate Hari to point to answer he think right.

   

He is doing good.He is picking right choices 95% of time.Now I am helping him to spell his choice.

2)He is learning to spell in a big 3 piece board, A-I,J-R,S-Z, with help to point at right alphabet.

ex: Good  lets spell on this alphabet board -a n t a r t i c a 

He is now in this stage.

He also had an eval with one of speech therapist last month and got positive feed back from her side to continue RPM.

5)Summer : Harshitha had many joint session with Hari in floor time center and with social session with another speech therapist, now Harshitha is behaving like therapist half the time and loving sister half the time , both are coming along well in this summer.

With speech slowly improving,playing with me like a lion cub all the time.He is demanding Prashanth to play with him,carry him,take him to bed. 

6)Next step to help Hari to play with peer/his age kids.We thought we will put him in county school to address this.Due to so many complications ,I decided to keep him on home based kindergarden this year.

Kinder garden Enrichment :Still want to give him opportunity to be with other kids.So this fall he is going to start on Church based preschool  mon/we/fri -1:30-4:30 pm ,willing to give Hari a place in their after school Kinder garden class.

This fall is huge to see how Hari is going to accomodate in with lots of  kids , in a school like set up.

Will update in a while if I see any positive from our side.

 

 

 

Happy Anniversary Prashanth

I always write about Hari,Harshitha and our treatment on Hari.On this occasion of our anniversary I take this opportunity to share about Prashanth .

My love grow more everyday for him since  the day I met him I think.If someone asked why you want to marry him 11 years back - I would say because my mom said so.But never a day I think I am in this marriage because my parents said so ,it's because I love the life that we are trying to build together. Like any other person or marriage in the world we have good  and hard time.

You want to share good times with your friend ,but you need a friend in your hard time to help you out.Your respect and love grows deep seeing him around you ,showing you he is like an anchor on your side ,not leaving whatever risks or danger you are in .His thoughts and actions are to  sail you back safe and Prashanth has shown me time after time that he is that friend to me .

Most of the rough time -let it be  Harshitha's initial 2-3 years years of  wheezing, my mom's illness and eventually her passing away, my leg injury , Hari's diagnosis of autism  and every day since then our life is always about fixing a problem, finding a doctor, look  for therapies, other alternative interventions to help our family.He not just been there, but to keep our household to have a normal life.

One thing is sure -Prashanth is always there to stand next to me,supporting every single decision I make irrespective of outcome it turn out for Hari. It's been hundreds of decisions and thousands of dollars still he never said no to any of  my new treatment plans for Hari .

Patience - He is man of patience or else so for atleast once a day  is 11 years * 365 times I need to apply for divorce .I know I am the trigger for your anger . (every time you loose your mind ,please see  I am your help to get back to normal Let it be being most careless things I do by loosing a home key,wallet,cell phone ,or accidents or any other one etc  ( I can fill in for rest of the day if I have to put every single one of them in the last 11 years)  .I see behind every anger moments of you ,there is never a husband or a man ,I always seen a genuine person with concern about safety of our home and  family. Including the one today morning - for every one of them sorry and I am working to be more  aware  and safe. 

From giving reminders to take my medicine to handling biggest of finances , I know you are there.I respect every comfort that you give to Hari as his Dad .My prayers for our happiness to grow together in every day more .

Thanks for being such a lovely person and my prayers to stay as loving,caring,honest person .

It's autism awareness month - pray for all those lovely children

Hi all
Every time I speak about Hari and his good.Let me share today about our hard times too .
 Hari is enjoying his horse therapy and he looks so cute too.He is getting so naughty , want to throw any toy in our back yard.he is successfully getting potty trained. He is learning to sort things ,play more ,enjoy other children more .

It's been since august 2013 anu's top ten reason for  saying "I had a long day "to Prashanth .
1.I am trying give milk  for his  calcium n other good in them ( almond milk ) .till date I have not been able to give.I would have wasted world's most amount of milk  I think.
2. I want to teach Hari to spit water after brushing his teeth .
3. Only fruits he used to take are banana, strawberry and clementine. Now he became so picky I need to make him play in swimming pool to Make him eat a banana.
4. As all know Hari is on milk free,wheat free diet ,his choice of food is limited to rice, dal,sambar,rasam ,pulao, dosa,idly ,quinoa.if he did not eat rice and dhal or idly or dosa ,honestly my day is gone . I try to cook as many things he would have ate in last one month whatever and try to recreate the same in my kitchen.I have no clue on many days on what to prepare next  to try feeding him before my next speech/ OT appointment.
5. Every week I go two to three times to speech/ OT .I need to leave harshitha in couple of my friends house to avoid her .I need to check if they are available back and forth phone calls to Prashanth,my friends ,packing her snack very time ,pick up n drop.
6. I was told to work with sign language, picture , now ipad ,visual schedule , to communicate  with my little one for basic needs  and wants. Sometimes I think when will I make a normal conversation with him .
7. Hari is with behavior ,speech and occupational therapist .Each give you ever growing list of  homework,recommendations,views and to do/ not to do and to make all three parties work together is a challenge .
8. Harshitha and Prashanth ...oh my god that's a combination like mother in law - daughter in law combination .  My little 9 year old teenager and her school work / art work / swimming / gymnastics .
9. My sweet Prashanth and his concerns - so true ,informing me to eat my breakfast,don't take coffee,go to gym, eat healthy .
10. Best of all -meeee. Everyday one of the above is prone to happen , I will try to move myself from negative ti positive though like a game.

I heard it other day in my favorite show - Good things/time/job / money/ status/ achievements when we will have is not important . We need to know what we have  is already a very good life , please take a moment to see and respect it and enjoy.

Hari - February 2015

Our Hari is doing wonderful these days. He is more naughty, trying to communicate and play with us.
He is showing lot of  interest in things around him - people, toys and kids.he try to observe his surroundings to see what they are doing,give a smile and initiate his communication by playing with their hair, rocking on their back.


Speech and communication:
1.He goes twice a week for speech therapy.we teach to echo the sounds.using say this"a".
His sound bank includes - a,e,o,I,u,b,t,m,p,s,f,sh,w,k,c.
2.He started communicating his needs through sentence like I want swing since January
He say I wa swing .
3.He had  acquired lot of words and then lost many of them. So our goal is to make him consistent.
4.He is awesome in receptive - when you try to play or help him with his snack.
5.He follow two - three step direction if you go slow.
Example - Come here. Let's go out.open the door. Get the bowl.sit on the stairs. Where is the cookie?

Occupational therapy : he is going twice a week
He is showing immense improvements in here.I know it sounds silly for mother of normal child but it's kind of big for us looking at Hari doing these as it is milestone achievement from him.
1. Catch the ball - 1-2 foot distance.
2. Throw the ball.
3. Open different lock in door
4.using pencil grip to take of clothe clip.
5. Playing roll/ push the big exercise ball with other person.
6.hold and draw a line - working on it
7. Hit the ball like cricketer hitting ball  tied to the rope.

ABA therapy.
He has around 35 hours weekly working on most of the above.
He love to play social games like ring around the roses, hokey pokey song,head shoulders knees and toes,London bridge,pat a cake.he imitates and dance for these songs.
He like to imitate our actions.
He is learning People to identify his Amma,appa,akka
name of the rooms around home like kitchen,bedroom.
He is learning to go bathroom - getting potty trained with lot of success .

Floortime therapy:
He loves to play hide and seek under the blanket. We are playing swing with the blanket .Harshitha shows great support to maintain his acquired language .she acts likes trained therapist. She plays catch with him, play rhymes with him.she shares her room,toys and behave like a big sister most of the times.love you girl for being such a nice big sister and lovely,kind human. She gets angry if someone teases Hari. That's a pleasure to watch her defend her younger brother.

My angel harshitha
One kid said Hari is a baby and he is still in diaper and can't speak.
Harshitha's response- Hey act like a big kid .you sound like a bully .That not kind to talk about my brother inability like that. He is learning to speak and he can use bathroom at my home.
She was red and gasping saying this. I am so thrilled to see her being a responsible sister. I got my tears looking at the situation where I was thinking what to say to the other child and she stepped up.

Hippo therapy .
It's otherwise called equine therapy . Horse based physical therapy.it like hobby,workout, physical therapy and many children on special needs love them. I kind of like Hari would look handsome like a prince on it and want to give Hari a feel of it .Hari being a master and horse listens to him.
He is going to start it on march 12 2015. So next time I try to get pictures of him on it.

Hari at nov 2014

Hi all,
Its been busy school year and  Hari is showing improvements and some limitations in school,speech and OT.He is showing more naughtiness these days, observing others all the time.He imitates your actions and so quick on getting all salty junk food from us.Like dad in that :-))

School:

For a brief time Hari was attending county school .Since we got Medicaid and through them we can get ABA ,so we decided to go with ABA school.
Hari is currently attending Home school .There are 5 therapist coming to teach from a private school based on Alexandria -CARD (Center for Autism and Related Disorder). He is currently working one on one with therapist 32 hours/week.We got them till feb 2015.
Questions asked to me by friends:
Is it ok to take him out of county school. They are trained teachers with speech and OT at school.
    Yes they are . But on children to teacher ratio. 8 students and 2 teachers. They set syllabus based on our request of what we want to teach the children.I feel if I miss out on some they wont teach him that.I did not ask whether he needs help in sensory last year that made him miss out oocupational therapy at school, which I found out towards end of school year.I dont know how many like that I missed .I am just a parent not an expert to set his syllabus right?

In ABA school, they fill out SKILLS - like an assessment on where the child stands on 8 different categories  like academic, social skill, play, oral motor,fine motor,physical exercise, etc. compared to normal child and they work ground level to up .If he shows more improvement they teach next level and include more skills to teach.

  Being said I think this is good for him now.I don't know few months from now.I realize my mistakes little slower :-( all the time.

Improvements:
He is adapting to all the therapist, playing with all. He is working very hard for earning boondi and murukku  from them.

Help:
Anyone willing to do murukku or boondi for hari are welcome and I honestly appreciate.

Speech:
He started using 5-10 functional words.5-10 words as label.
He is learning to choose his favorite to play or eat between two .
example: choose between water and juice or cookie and banana.

Help:
1.Please say HI and BYE to him. Please wait for him to respond and he can say Hi and Babe (bye) in his language.
2. Please introduce yourself .If you have a long name please give a short name /nick name that you think is ok for him to call you.
Example :
Hi hari .I am malar/ram/deva ...
Can you try my name . Say Malar/ram/deva ...
Give him 20 to 30 seconds to respond.That is his processing time to undersstand your question and try to recollect the sound and say.

Occupational Therapy:I take him to OT at floor time and traditional OT at wings to fly.
We brush him- like a massage every two hours once to stabilize .

About us:
I feel very hard to say this but I want to be honest with you all.I came across various people who tell me things to cheer me up or to say good  job.I get it and thanks for it. But let me say How I feel it inside.
I always try to look happy or normal or so exaggerated with Hari. Few looking at it has said to me -
1. Anu only you can do it ,that's why God has given him to you.
{I wish to say -Dear God , I am totally ready to give up .I can't think/fight/play/sleep anymore - Please make my baby fine}
2. You are so strong , I don't know what I would have done if its for me .{Please dont say this.I know I am struggling to smile and keep my spirits up.Every mom want their baby to be stronger/smarter/happier/healthier thousand times than them. I am no exception right!}.
I am feeling so hard inside for What happened to Hari? or What all we missed as a family ?
You can cheer me/us up by spending time with us and Hari. He is child who cannot use lot of words but can smile,giggle and show he love to play.Give it a try yourself and fill me with your thoughts.
You can fill me on anything you normally talk to others.That's what we miss.

Hari - I am 4

Hi all,
My mom is the one who keeps posting about me.On me turning 4 thought I will write from my behalf.

Birthday!
I love that day who doesnt. Thats the day 4 years back I saw my mom,dad and harshi first time.You all saw me that day.Many said I possess good looks still I have that I think.I lost some weight ,come on is it not a trend to look lean and handsome.I still remember you all and love to connect with you all which I am learning.
I want to share you all how my mom ,dad and sister was in the last year.
My mom is restless,sometimes depressed,feeds me always,kisses me always and feel too anxious all the time .She gives me yucky medicines a lot and then comforts me with yummy snack as though I am sad.She try to fix me as though I am broken which I am not.She prays for me,she is playing with me,learning everyday new for me  and make me a guinea pig to all her experiments, now even she started on marathon prayer to God for me I think .She is making her and I go crazy - you all agree right.
I love you in any crazy thing you do because I know you are mom and thats what mom do .

My dad -He is a nice guy to be around.He is man of questions.In his mind he would have asked million questions .Biggest question he ask everyday is Why me?How I lost my speech?When will I be ok?Honestly best man for my family, never ask Why to spend for evaluation/therapy/doctors/treatments? All his questions is only with intention of  seeing me healthy and happy .I am happy, getting more healthy appa and I too want to see you more happy and joyful.He is the one thinks about me 24/7 and want to give me back my life..I love you Appa .How you cant tolerate me being sad,crying,frustrated and upset I also feel the same way when you are sad,upset and angry .Please be back to crazy and fuuny dad.

My Akka - She is  fun,loving and imaginative person.She is kind,giving and shares most of her toys,books,friends with me.She never complaint that I took all the time with mom .She never complaint about many favorite things/place/toys/events that she missed for me.She is the biggest gift God has given me.I love her always.I am going to play,talk and enjoy more with you.

My uncle/aunt/friends/well wishers - I know you all think about me,pity me,feel sorry for me not able to talk.I respect your prayers,ever grateful for the love you show to my parents and sister.I love when you take a little time to check on me,play with me and praying for me.My hugs and kisses.

About Meeeeeeee- I am happy,hardworking,determined and loving and growing fast in the last one year.I worked 20 hours ABA/week ,floortme all day and speech and occupational therapy twice a week . I know my calender is busy .My mom wants me do more. OH My god someone tell her.Its not fair!

My accomplishements:
1. I got my eye contact almost.I can understand you if you talk slow and simple
2. I am learning to ask my needs and want - know 10 sign to ask and 20 sign to understand.I am starting to imitate sounds.
3. I love summer,outdoors,parks,pool and hate crowd,sound and too bright light.
4. I repeat your actions.
5. I can open and close communication from 0 to 10 now though smile,giggle,sign.
6.I can say hi,bye and give kiss and hugs to you all.
7.I am comfortable with my peers and therapists.Love you all and thanks .
8.I learn to ride bike.
9.I am thinking about beating shresthu or Harshad in swimming.
10.I can be a good runner, mountain climber.
11. I love squeezes and tickles.
12. I an becoming super strong,super good, super naughty.

My goal-  To talk,play,live and love.

I know God has blessed me with lots that I need to be thankful for.So will be counting my blessings he gives me everyday.Love you all.Take care all .

Hugs
Kisses
from
Hari