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

Our trip to Georgia

 Hi all,
As most of them know Harshitha had an Elbow fracture and on June 27  she is out of cast.She is still feeling stiff and sore but should be fine in couple of days according to her doctor.
Now about Hari!
Hari is more naughty and smiling these days.He is more aware of his surroundings/people and enjoying his summer time.Learning is little slow as we had a trip to Georgia and Harshitha's doctor visits.
Its been 6 months his DAN doctor looked at him in person.We thought of showing Hari to him and also discuss about What next he suggests for Hari? We went to Georgia and stayed at one of our good friend's home for about 10 days. Thanks is too simple for what they did to us from the way they received us, accommodated all of us with so much love and made us feel at Home.Its not that easy to handle our dietary needs,messes that Hari creates and all of our never ending requests.My sincere thanks and prayers for their family.

Hari was trying a new treatment to learn about how his brain functions today, can we help him through that treatment named MRT .Outcome is Hari is in need of lot of that treatment according to the doctor and still is not sure whether how much he will improve.He also suggested us to start on a medication to help him.
We are still puzzled and thinking about it.We are also on the process of getting second opinion from different doctors through help of our friends.
Hari is getting into CARD school for autism in the coming fall.

Gift of Time.

Hi all,
April is autism awareness month.I just want to share with you all about Hari and request you all to share a talk/chat/mail to your friends and family about Autism.

Top things about autism:

 I learnt through doctors/developmental pediatricians/therapists which I want to share with you all.
1.I have all my respect to Pediatricians as they do a humble job,but when it comes to Autism most of them have very less knowledge like we do.So as a new mom/dad we think if something is not right we can talk to pediatrician - good but that's just a beginning don't right away rule out your concerns about a child and go for next thing in your life.
2.Milestones like turning/crawling/sitting/standing /walking are very important .We keep track of all these wonderful moments of our children,likewise babbling/cooing/pointing/gesture is equally important.When any child does that give an appreciation and allow them to improve by taking a good conversation with them.
3.Few behaviors of autism can be found early as early as 12 months.Keep a good observation on a child.
4.Boys and Girls are different/Boys are late in talking -please don't ever say this and wait for any concerns to be discussed with a doctor.
5.Children are more attracted to other kids/adults than Toys in their toddler stage, if you see them less interested please look close.
6.I know everyone know when a child walk, do anyone know how many words they should know by 12- 18 months.Please take a moment to google/read about it.
7.Toys - If you notice any repetition of  toys in a child look close to see how they play.
8.Child is not responding to their names,less eye contact please talk to your pediatrician.

I am not advising/educating you all  just learnt it hard wayand lost like a year for Hari.I heard this like 100 times best gift you can do to a child with Autism is giving them GIFT OF TIME.Early you find,early you can help ,early they can come back if there is an opportunity.Please don't hesitate to talk to mom/dad of any child if they are your friends as you are trying to be child's advocate its better than their friendship or misunderstanding.

Everyone of us talk everyday to our friends and family about so many things - movies,cricket,green card,shares,business,work,boss.Please take few minutes to discuss about autism to your friends.If you want talk about Hari ,I dont mind.

My kind and humble request to men who are my friends,Please discuss with your friends .I heard through Prashanth one of his friends shared to us like Indians don't have autism,its not in our genes.
Sorry to inform we too can get autism.

About Hari :
Hari is more aware of his surroundings.He is curious to see people around him.He is learning more sign language to ask for his favorite things like swing,slide,book along with chips,rice and water.He is learning to do puzzle and responding to couple of our requests - Come here and Sit down.
Prashanth and I are playing with him through floortime.I will be glad to share it to anyone who want to play with Hari or any other child.

As all of you know Hari is having ABA therapy .We evaluated him for an another therapy called Floor time.
ABA is like a teacher's role with a student and Floor time is like grandparents way of teaching to our child.Grandparents never critisice,never scold,never play with intention of teaching just having fun and getting their attention and share their stories,songs and allowing them to make mistakes and shower love to them.so what do the children learn from them - life!

Floor time  as the name sounds playing with child in his level,strengthen the child to emotionally bond with parents,friends and family.Through play we encourage
him to take a lead and we follow him.Whenever a chance is presented to us ,we help him by giving him a word,action and emotions attached to it.

We are adviced to play with him 20 minutes each time and 4-8 times a day .If you see me anywhere at your home acting like a child,rolling next to Hari, behave like a clown ,I and prashanth do that  to get and retain Hari's attention.

I was asked by many of my friends if I need help.Yes I need  help.I want volunteers to play with Hari on a regular basis.Once a month, Twice a month,Once a week based on your availability and interest.Please if you want to play
*dont giveup on Hari  in few minutes and not in between talking with adult.
*It has to be one on one with Hari.
*Join him ,imitate him and then make it more fun like how you engage a baby like that.
*Sit to his eye level.
Thanks for reading and will post if/when there is an update with Hari.

Balance !!!!!

I was trying to let all of you know about Hari's update.Not in a great spirit these days, dint have  emotional strength I guess.
Few /many imbalance we found with Hari last month.
Yeast:
Hari has yeast infection.Everyone needs and has yeast in their system but if there is a overgrowth that disturbs your balance of mood,digestion,immunity and communication.
Symptoms:
child cries all of a sudden or laughs all of a sudden.
Sleep disturbances
Feels irritated
Jumps or climbs a lot
Treatment : we have started on anti fungal medication.
So if you see Hari having rough time like crying or having a melt down -please don't ask me why is he crying,honestly I don't know other than I am trying to keep him safe and trying to stay calm.
 Mercury toxicity:
Hari has toxicity and thinking about doing chelation therapy.
Sensory issue:
Hari has low muscle tone,over sensitive to sound/light/crowd.
I was scolded by the doctor when he asked me how I play with him.i told him gently throw him above.spinning and holding upside down.
Please if you see  any child arch when you touch ,he is not able to take it.so don't.
Don't throw any baby or lift over your head.
In crowd Hari is not able to process multiple things like tv,music,people chatting,bright sound randomly some stranger calling his name.
It's like on a bad head ache day you cannot love your favorite music/enjoy ur favorite food.Over which some one screams surprise next to your head,that's too much right.
That's how Hari feels ,he is crying in certain environment.I will request if I want to reduce noise/tv to help Hari.
Treatment:
Going once a week and learning to do few at home with him.
Hope he gets his balance in time.

Patience and Learning with Hari

Happy new year to all .
Friends are so supportive and few suggested to post Hari's picture and add few thing to blog.Will do once I learn how to till then please wait.

Last two weeks that is our motto - Be patient , Learn about Hari and Help Hari.
Potty training
We decided to start Potty train Hari utilizing our winter break at school. It is a challenge for any kid and with Hari since he cannot express it we are super scared about it and also about carpet cleaning. With mindset of lets do it we put him in a normal underpants. At the end of two weeks not yet one potty in potty chair - hard luck. But he did his one bathroom when we took him consistently. So good job for Prashanth and Hari both handling it well so far. Now starting this week we are teaching sign for Potty.

Any results back yet ?
I think I have told about one of lab work went outside USA .It came back with lots of details about Mercury toxicity, immune condition and  Gutt Infections that he have . We are waiting for one more  lab result, hopefully by this month end that will also be back.
I understand your want to know -What in the world  it means? What treatment is available? How long do we have to give? Is he going to get benefitted out of it? How does this related to Autism/Speaking/Recovery?
We have scheduled for Skype appointment with DAN Doctor on  Jan 28.After that we will know  and will share as soon as I know the answer. Till then I am trying to be patient so please wait with us.

What happened to all specialist ?
We have scheduled Pediatric neurologist appointment -March 26 2014,Developmental pediatrician - still waiting.

Therapies :
Evaluation is a big thing in therapy world. They want to know where is the child now? What is it bothering him ?How much gap he has with any other normal child of his age? How to fix it  and How many hours needed?
There are so many therapy which are proven effective. What works best for our child we will know by trial and error method.ABA/FLOOR TIME are two popular therapy to teach the child how to live like us.
We want to start ABA as we got consultant for it and Floor time as of now is given at school and we are learning about it.

With lots of problems with Insurance no ready to kick in fast. We have decided to go and do anyways on our own.
Applied Behavior Analysis Therapy: It is like speech therapy.


We started with ABA Therapy - Verbal Behavior (Applied Behavior Analysis)  from Dec 3 week.
1.Assessment - It is complete and they wanted him to start therapy with 20 hours/week minimum and goal of 40 hours/week.
2.Manding
       We teach him both sign and word of things he like. We show chips and say chips and also using sign language .We pick his hands and show him this is the way he has to ask if he needs it.We have started with Chips, Water, Rice, Bounce. So please as per therapist we should not use it outside the therapy time. Please dont try to ask him or give him those when you see him next.

Sensory Therapy:
I know it is new I am saying but I am learning new every day and each one of them say that is the most important for his needs and everyone says they are like foundation. Our body and mind is connected and our five senses play huge role in our mood /temperament and the way we receive and accept our envioronment.Most autism children have auditoy /visual issues.If you have noticed Hari he like to flap his hands,close his ears ,chew things, these are symptoms he could  have sensory disorder.Sensory Motor Integration doctor said he is like getting to know how his body react to envioronment  and help him.So scheduled his evaluation and it will be done in Jan end.

Decision:
So January end is lot of bomb shells on us. Just kidding. So like a poker player should learn to wait and watch and win when opportunity is right.
With Hari God willing and with love and prayers of you all help him and start his recovery journey in right path.

Mommy's Job:
Searching /Finding therapist who is willing to work couple of hours every day - FOR ABA.
Play role of therapist till then. Everyday between 2-5 I will be in therapy with Hari. So can reach me any other time with any questions/concerns. Taking him to sensory evaluation.

Friends please do drop by to our home any day evening after 6 p.m to play with Hari. Weekends anytime after 1 p.m. We love to have your company around us too.