The Last week of August

First Grade

Has started .

I simply cannot believe that he is a first grader?

He is in the mainstream class right now.

In the past I have always resisted mainstreaming, because I don't know if a large classroom is where learning really happens for auties.

BUT - his teacher seems really nice and I am keeping my fingers tightly crossed

And R likes mainstream class - so that is where he is going

We are to have an IEP again in September and we are praying that they do not remove his shared aide.

The Weekend

We swim a lot and sit out a lot

I try some Floortime but there are no long flows of interaction.

The little people ride the bus

Then another person rides the boat

Then R moves to the watering can

Then he makes me touch the tomato leaves so he can smell my fingers

Disconnected islands of ideas

( later when I think about why this could be, I realise that I have made the fundamental mistake of Floortime - which is to not start with "Observation". Instead I have done lazy floortime - just used toys and props. This is why R moves from one thing to another - more on this in another post . What I should have done is observed his interest.. what he was doing and started from there )

We swim a LOT

The water is ICY cold - the swimming pool water is supplied by an underground spring in our cabin complex and I certainly think that this spring originates in the icy Tundra

The high point of the weekend is finding this turtle.

DH is very keen on having the turtle as a pet .

I am also converted to his POV when I see the underside which is so clean and smooth . Most civilized of the turtle

I somehow suspected that the turtle would be like the  stones one uncovers in the garden sometime- smooth and clean on the surface  and whose underbelly is full of creepy crawly things.

DH carries the turtle to our cabin ( its his hairy arm in the picture and not mine.. I assure you mine is quite smooth and hairless - even though I don't come by the hairlessness entirely  naturally ) 

I am hoping that the turtle will like our yard and we will encounter him multiple times

Monday

We go to the school's PTO meeting

Its interesting to be there. I imagine that the people sitting there are sitting ensconced in the carefree-ness of having neuro-typical children.

I am keeping my fingers crossed that the school year goes well

As we walk towards the school cafeteria, I introduce myself to one of the moms who is looking unsure.

She confides that she is actually not the mom but the grandmom who has had to take custody of her grandson - owing to her daughter in law's issues.

And also that she is worried that her grandson has ADHD and she does not know how he will pay any attention in class

I don't know what made her show her vulnerable side ( for Westerners almost never do - they  usually  put up a brave front, Easterners usually talk about their problems - secretly they think this ward off the evil eye - such is the subtext of culture )

But I am grateful to her for it - for I had been in my Autie-mum self-pity thinking that everyone else's child  has it so easy

I tell her that my son has Autism and she tells me that she has heard that they are very brainy

What a sweet woman!

When we come back home, Miss Gypsi R's therapist leaves.

She recently took R to McDonalds and then wrote a book on it. Pictures and descriptions of what they did there

The trip has been a grand success and R shouts out her name when we pass Mc Donalds

I plead with R to come out and play with me

He says a firm no to all my entreaties

So I wear my running shoes to get on the treadmill and immediately R pleads for me to go outside

He hates it when I form a separate world with the treadmill and my headphones.

We jump on the treadmill all evening and  R unfortunately learns about static( or stack-it as he calls it )

He keeps trying to hold my hand and gets an  electric charge -

He is full of self-pity as he has also been stung by a bumble bee - thanks to his current favorite song taught to him by his beloved Miss Sadie ( I am bringing home a baby bumble bee...wont my mama be so proud of me )

Unfortunately the song ends in the child being stung by the bee and the song's prediction, has turned into a reality for him twice

Miss Sadie apologizes profusely but I tell her its a practical lesson that is priceless !

( even though the sight of his swollen finger and his piteous bleats of "all done bumblebee hurts" and "finger hurts" and "its sticky " are  a stab at my heart )

Besides she just loves him and can do no wrong as far as we are concerned.

Like me, she calls R her Prozac

Tuesday

Welcome Books is a series that R is addicted to thanks to Miss Gypsi

When I tell him that we are going to the library he is so excited that he literally cannot sit down !!!!

This is a geek boy for sure

At the library - I make him apologize to the librarian for the book he lost as he puts it "Gone to Hilton Garden Inn". ( I have had to replace this book and I want R to be more careful )

When it comes time to check out - I see he has chosen about 40 books that he must have.

I quickly give him a reality check

And tell him he can have 5 books - which he quickly bargains up to 6 .. how thrilling this is to me I cannot tell you . He now baragins all the time .

When I persuade him for bathtime telling him that it will just take two minutes .. he shrewdly asks for one minute.

Wednesday

no sooner than I come home R insists we go out and play in the trampoline where unfortunately we have a learning opportunity to understand what static means once again !!

R keeps pleading with me "no static" and tries to hold my hand and gets the jolt of electricity.

Finally I leave him in it alone for a bit

In the mail my sister has send a Rakhi for R . Rakhi is a festival in India - where sisters tie a thread on their brother's wrist and remind them that they must protect their sisters . This tradition started in Rajasthan - when the Rajputs would go to war and the sisters would remind them of their familial responsibility so they would not be too reckless.

I read the note my BIL has written and I am a little teary as my BIL's note says  that R can always look for advice and protection and anything he needs from his elder sister in India.
( in this way he has reversed  the tradition ) .

 I think my family understands autism more now.

They have always completely accepted and adored R . But I think they also always thought that he would sort of outgrow autism - if not in exactly that way - for they don't really think of autism and R - but just him ( which really in many ways is the approach DH and I have )

My sister would tell me not to worry "just becasue he makes humming sounds"

Somehow while I have always tried to explain to them all the challenges  he also has -

I find I also secretly like they dont take his challenges seriously .

Their implicit belief that an intelligent loving child like R will always find his way ( which BTW I do believe ) is something that I like

Thursday

I come home for lunch

DH and I are on the 17 day diet .

We find we have each  become enormously corpulent over the summer( this is in no small part due to all our food rituals - Icecream after dinner , cupcakes, baileys etc )   and have to each lose 12 pounds immediately or we shall immediately explode

One of our friends has advised us on this diet and as she is a person who gives amazing great advice always  ( on varied subjects such as - the little plates can go on the top rack of a dishwasher, you should keep a little plastic bag on the kitchen counter while cooking so you dont have to keep going back and forth to the big dustbin etc ) we both have gone on it

Its a LOT of fun to diet with my DH - in fact one of the things that makes it great to be married to him is that he is a guy that is fun to do things with.

So these days if I have time to come home for lunch I do , and DH makes these amazing omelettes with sundried tomatoes and serrano peppers and turkey meat

This is a great diet, guys and we have pulled ourselves back from the edge of disaster

And we are finding that we enjoy eating lunch and chatting at home quite a bit. This is now our new date lunch

My friend in India tells me that she found a book by Arun Shourie - a famous journalist in India. The cover caught my friends' eye as the woman looks a lot like me

The book is his and his wife's story - raising a child with Cerebral Palsy.

He examines the  platitudes that people give parents of kiddos with special needs kids example "he ( child with special needs) is suffering now because of all the bad things he did in his past life " . 
( this one always incenses me )

His book is a no doubt academic  appraisal of the explanation of suffering in various religions,  but the excerpts of his  feelings about his son  has  me in tears. There is such a  special bond between parents of children with special needs.

Miss Gypsi is doing R's homework with him - he has to fill out a chart of "all about me"

Its a really clever bit of homework - I thank God that R can express ( some) thoughts now .

I love knowing little things about him like his favorite color now is blue.

There are people who believe children are people to be moulded .. but I often think of raising R like a process of discovering him.

In the "other things about me " section he has written a bit  about me.

His thoughts are simple like his little heart

"I love mama ..sometimes she goes to the airport"


There are so many things I wish I was better at as a mother

But in R's eyes there is only this one thing that he faults me for.- ( even though he deals with my business trips with fortitude and has a great time with DH )

That sometimes I go away

Tell me,was there ever a more darling  child ?

The Last days of Summer

My dear readers  I am reconstructing the past 4  weeks with pictures, before they are gone from my mind

How is it August already ?

Just two more weeks till school starts

I always dread the start of school – as R does not seem to really enjoy school much anymore :-(

DH pointed out to me that 1) most kids don’t enjoy school 2) as long as R is not being bullied its fine 3) he needs to do things that he does not enjoy

While all this is true, I still want him to be happy and enjoy his day

This child has worked so hard since he was only 26 months…a mere baby

Often these days, the days of being a baby are getting past and I want to hold on to some carefree bits for him

The other day, when we returned from the cabin, he really wanted to go to buy Coke and Sprite ( which is his current obsession ) – we went to Weigel’s and bought the big bottles

( just so you know, he does not want to drink these beverages, just look at them and play with them )

I watched R stim off them and thought of turning it into a Floortime game

And then I stopped myself

Let it be, K I told myself

I took joy in his simple pleasure in these bottles

I remember once telling my MIL, whether she would consider a ketogenic diet for my SIL who has epilepsy

“No I wont”, said my MIL firmly , “Nidhi loves enjoys carbs and I am not going to ask her to cut those out”

At that time I wondered why my MIL would not do everything she could to help her child .

But now I do

OUTSIDE TIME

R is very very big on being outside these days.

Unfortunately it is horribly horribly hot

One day I am so grumpy as work has been terrible and when I get home , the air-conditioning has flooded the garage ( and leaked into the basement )

This is already my last nerve as a couple of weeks ago the washing machine flooded the basement

I am so overwrought and as soon as sit down - R is dragging my hand to go out - AND its 97 degrees

I want to yell - can I have 30 minutes please

But then I suddenly think that my autistic child is asking me to come play with him

And I re frame the situation - as its an invitation - an absolute privilege

I go out side

R collects all the objects of his desire and takes them into the trampoline - DH has purchased the number book series and he is crazy about them 

We really have a great time and I forget about how hot it is

( i remember when I was a small child - how I never used to feel hot, ever - though Delhi - where we lived was hot as the Hades and there was  no  air conditioning. And my school had a tin roof )

Another thing I am noticing is an improvement in Executive Functioning. Many Auties have a problem with Planning and coordination - but with R when he is interested We are noticing some improvement in this.

LANGUAGE and READING COMPREHENSION

We read lots of books- he tries to simplify the books with themes

He will look at the pictures of the polar bear for instance and will say "Polar Bears" Then he will add  "no seals".

This is fine and clever as he is able to say 2, 3 things about everything in this way  - by describing what it is and then  what its not

I know he has a lot to say and lot of desire to say it - but he does not know HOW

No matter ! . This too will come

This has been the summer of reading comprehension and while its a long journey we are definitely making headway

What is equally impt I think is that he LOVES books - I am so glad for books have always been my haven

One night when I ask him to pick what books he would like to read, he chooses this great pile of 27 books !!!

I often wonder how much he understands for he often categorizes books based on his own agenda - rather than on the story

So for instance , he will point to a picture of a furry lynx and say - "snow" and then at the Great Bengal Tiger and says "no snow "

But when I am reading the story of the "The Invisible Moose" he cries as though his heart will break when the beautiful moose is stolen .

And when she is found again, he jumps up and down on his bed happily!

I think of the scene in Strange Son when the dad finally realises how much his son comprehends while seeming uncomprehending and asks him  

"Dov what were you doing all these years "

Dov types back "Listening"

It gives me the goose-bumps when I read this and I often think of R with apraxia and how important it is to presume intellect

Trip to Atlanta 

I have a work trip and DH and R come along as the Great Coke museum is there as this beverage  is R's current obsession

We stay in a hotel in Centennial Park - can you see the CNN building in the background

( probably the high point of R's Trip )

R snuggles with a rubber snake and DH  and I skeeve all my friends out by uploading a picture of him kissing the - most realistic snake that it is !!

Though R has been obsessed with Coke for a while - when he goes to the Coke museum he is done in 10 minutes .

( he talks about it for days later  though )

I hear him talking to his therapist the other day  -Papa takes me to Statue Of Liberty and Coke Museum
while  Mama take him to "Starbucks"-

Way to make me sound weak !!!

Friends

We spend a lot of time with friends in July and August

We have a bunch of friends that spend the weekend with us at the cabin

I simply love the way R is completely accepted by all my close friends .

R is so comfortable with these wonderful little girls . These are the first few children he actually seeks out

They take their various screens go into the bedroom and close the door behind them

So giddy are the three of them ( though R really is not interacting per se ) that when I and my friend go to make up a air-bed for the girls - the kids keep jumping on the bed

As soon as we get one child  off , another leaps on the bed

My friend and I start to laugh and laugh

So we give up and come back later when they all have calmed down somewhat !

In Atlanta we visit another old  friend's. home- she was my roomate in grad school and we have stayed close ever since to her and her dogs

Their house is gorgeous and has a swimming pool and a  river close by

And R - water child as he is has a lovely time in this gorgeous place

The beginning of school 

Is always incredibly stressful for both me and R.

But that time is here now and we must make the most of it

My friends always compliment me on how much I live in the moment and appreciate life

I seem to be a great optimist

But sometimes I wonder if I am a pessimist in disguise

For the person who really treasures their present , is also the person who is aware of how fragile it is

Each day as I leave for work, I watch R and DH sleeping, turned to each other - like a big C and a little c.  I listen to their breathing, thankful to God - that my precious ones are with me

Each time I hear my family's voice on the phone or read their words over an email - I think - thank you god they are still with me .( for my parents growing older,the little time I get with my sister  breaks my heart )

Though I am so enjoying R's childhood,

Always behind this great joy, is the feeling that its slipping away

That soon I will no longer be able to be the source of joy that I am now

That one day, he will see himself through eyes not as adoring as mine

I think, in  counting the weekly hours of therapy and measuring progress, there is a very real danger of missing these precious childhood years

Dear reader if you have stayed with me this long - thank you

I started this blog as a sort of stern voice and record for my floortime sessions

It has long transcended that purpose

It has become  way to connect with myself and be  the keeper of my memories

But its also become a way to connect with other mothers and fathers like you

When I write these posts, I  think of the little boy of Tagore's poem "Paper Boats.

 In this poem, a little boy, floats paper boats, after writing his name on them -hoping someone will find them

Paper Boats  by Tagore 


Day by day I float my paper boats one by one down the running stream.


In big black letters I write my name on them and the name of the village where I live.


I hope that someone in some strange land will find them and know who I am.

When night comes, I bury my face in my arms and dream that my paper boats float on and on under the midnight stars.

The fairies of sleep are sailing in them, and the lading is their baskets full of dream

What I wish I had known about therapy in the beginning of my Autism Journey?

Autism and therapy is a huge topic

In the initial months post diagnosis, its incredibly empowering to know you can actually do so much to help your child

 On the other hand, its incredibly confusing to know exactly what to do.

 Now in my 5^th year of the autism journey, there are so many things I wish I had known right in the beginning

For a brief but excellent analysis of methods go here on Autism Tomorrows. Its  an excellent smart blog and her thinking is so much like my DH.

For a perspective on principles to consider in your therapeutic choices,  read on

The following are some insights from me, my DH , the people that work with R, and my autism parent friends .

Thank you to all of you for your perspectives

Intervention is critical  

There is no denying that intervention is very important. R has made so much progress since 3 and we firmly credit the great therapists and interventions we had

Other mums agree

“VB especially has been life changing, as I firmly credit it with getting A to talk”,  says Lillian

“I feel like Ts therapy has been transformative and life changing for him and for our family. When T was first diagnosed, he was completely unable to communicate any needs or wants, he had almost no receptive language, he was not interested in other people and he walked around in a kind of solitary fog most of the time. Step by step, my husband and I have watched how T's teachers have found creative and fun ways to engage him and spark his curiosity and interest. They not only helped him learn how to learn and communicate...but they sparked a desire in him (buried deep) to engage, to explore, to enjoy the things and people around him” says Kim

“I have often thought that getting that early intervention was absolutely crucial to the successes he has had. We've had some brilliant OTs …there is no question that he has needed ST and he has benefited from it. Lately, I've seen big improvements in H's coordination when riding a bike and swimming thanks to PT. .” says Ellen

While  getting the right help is very important there are many things to watch for

Understand your child’s autism

This is the very first rule.

I am coming to feel that there is no autism.

Instead, there are many autisms .

While, the tendency in the medical community has been to keep simplifying – ( now even Aspergers has been put under the spectrum) , the reality is that “Autism is only a description of surface symptoms” ( Jill Escher )

As parents I think one of the most important things is to thoroughly understand is the way in which they need help.

 Specifically, forget labels, and  understand  the barriers to learning and socializing for them

I remember one of our ABA instructors ( who we loved   ) was very worried  when R had hardly any words even after 1  year of ABA

She drove to my house one day saying she had an idea.

 Her idea was that as R  loved his mother more than any reward – I was to stand outside the door.

He had to say “Mama” or he would not have me enter the room

He tried and tried but the words would not come out and after a frustrating amount of time – we gave up

The real problem was not that he did not want to say my name – but that he could not

He had SEVERE Apraxia . His mouth did not move correctly.

So the first and foundational rule is to understand what your child really needs

 “if I know what I am specifically trying to target...then we see progress” says Heather

Custom Home program

Once you figure out what your child really needs it time to figure out what exactly to get them

The very true cliche of “if you have met one child with autism , you have met one child with autism” needs to be taken a step further.

And the therapeutic program needs to be developed that exactly meets his needs

In the beginning, somehow, one gets into the trap of thinking that more is better

 We can obsess about getting them the 40 hour per week” golden number without thinking specifically about what we want to help them with .

Getting them a lot of help is good, but its only one aspect, getting them the right help is very important

“Talk to most autism parents now and they'll tell you, for example, "We have an ABA program, some OT appointments, some speech appointments, a social skills group, and a few other things." It's usually quite disjointed, a bit directionless, extremely expensive, and very time consuming.

If a parent can say, however, "I run a custom home program," that parent (after a certain amount of learning, to be sure) can cherry pick the tools (for example, concepts from the Son-Rise Program, Floortime, RDI, OT, PRT, whatever) most relevant and helpful for the child, focus on the most important goals, and intensify the hours to the extent desired… “

Jill Escher

Think in terms of helping your child progress, not curing autism

“I wish I had learned to focus on Autism as a life long neurological  condition …..I focused on two key skills as the end-all-be-all for success and when he blessedly acquired those .. I was taken aback .. woah he still has autism .. major grieving ensued….It s a ultra marathon .. though please celebrate like hell when you reach each milestone” says Heather

. “VB was critical for us ...but with that being said, I still have an 8YO with autism....but I would like to think that the therapy helped push him along faster” says H

Its also my personal view that thinking in terms of curing autism , can leave one vulnerable to quacks .( as in my experience , mostly the quacks promise cures. The good guys always talk about progress)

( not to mention the severe psychological impact it can have on the child and the family )

Take the advice of experts but remember that you are the expert in your child

This is a really important concept and one that took me a while to understand

“I wish I would have known that the professionals are not really experts on my child, they are merely  part of the team and I am the case manager--the expert on my child. I wish I had the confidence to trust myself, my instincts. I could have been much more assertive and been much happier rather than wasting time questioning them in my mind. “
I wish I would have known that there wasn't a one size fits all approach that I had to follow. I spent a great deal of time figuring out the right mix of what my child needed and that is always changing.”

-          Meg

“They are really no experts in your child’s specific autism .. every expert is an expert in their particular field .. you need to be the one to synthesize it all together in the way it works for your child ”

-          Says Atul

Also , don’t look for  good answers on prognosis.

The real truth is that no one knows .

This generation of auties , I speculate , is going to be more different than any other generation of auties from the past.

“ I wish I had known that with Autism “functioning levels” and “prognoses” are bullshit concepts” says Karen

Modify your program as your child’s needs change

The mix of what your child needs will change in time

Don’t think that if a particular method was very helpful at 3, that it will also be helpful at 6

Choose the right therapists

Having expert therapists is important.

As is having therapists with a  loving positive attitude.

This has been one of the main criteria with which we seek therapists for R

We have been particularly blessed in this respect.

R’s therapists are not just good, they  also love him. And they see his strengths.

“Your program, your therapists  should be flexible enough that therapists change their approach even based on the mood of the child”. says Atul

For instance, the start of the school year is very stressful for R, so we are telling his therapists to really be sweet and kind to him.

Our purpose is not to explain his “lack of performance” but to make sure that he does not experience any additional stress in a time that is already stressful to him

After you have been in therapy for a while …be open to all options …. including getting off the therapy train

An important thing to consider is that some children may outgrow specific therapies.

And that therapy may be replaced by good teaching

 “I think the EI and Floortime stuff when A was little helped me more than her, giving me something to put my hope in at the very least, and teaching me how to interact with her at best.
However, what I have seen over the years, especially as she's getting older, is that nobody seems to have any real "answers"....OR they're just plugging along doing the same old things hoping for new results…I really do feel that 90% of A progress is because of DH  and me and her natural maturity and progress at home.
I also don't assume that our experience is like all of yours.....for me personally, I don't think the whole therapy world is smoke mirrors, but I think some of it is definitely a waste of time. We've had a lot of freedom and a seen a LOT of progress since we got off the "therapy train" and I'm really looking forward to getting off the government school train as well!” says Amy

Think critically

 Don’t get into a panic mode. Its so easy in Autismland to get distracted by false science.

A few may be trying to make a quick buck

“Run from anyone that promises a cure” says Lillian

 But there are many well-meaning and talented professionals who are trying to help you.. its just that their techniques do not work for your child’s autism

“The people who proselytize each therapy like AIT etc may not be trying to cheat you at all .. they just may have examples  that work for certain autisms and not all of the. Try things out .. if they don’t work don’t continue” says Atul

“Many EI providers don’t know much about ASD.. I think a lot of them have experience with Downs .. which is just not the same thing…Because of EI I blew off language…in my mind I thought of it as a delay .. thank god for my ABA team .. he had to be taught language .. just like he had to be taught pretend play “ says Christine

When a therapy  does not help your child, don’t automatically assume that the problem is that  you that did it wrong .

It simply could mean that that is not the right therapy for this autism even if it worked for that one

Though its easy to do that

As  my friend says

“The lingering doubt of course remains- were those therapies really not all that helpful, or wasn't I able to tailor them to my child's specific needs. It's stuck in my mind that if they can't learn the way we teach, then we have to teach the way they learn. So if he doesn't learn, until proven otherwise , it's me not teaching the right way. Which- of course, is very conducive to inner peace and smelling roses.. says L “

Also don’t compare your child’s progress to other children’s progress

“All children,  autistic or not,progress at their own pace” says Mysh

Open your mind  to your child

“For a long time with Ry, I was standing on the outside demanding he come to me. That he meet my standards, that he reach certain markers, before he would receive my praise and approval. It didn't work and he was miserable, I could tell he was leaving me psychologically. I had to tie that rope around my waist and meet him where he was, not demand he meet me where I wanted him to be. Together, I would shepherd him toward where he needed to be to succeed in life. But he couldn't do it alone; just like Carol-Anne in the Poltergeist movie needed her Mom to come to the other dimension and get her, I needed to meet Ry in his other-place, circle my arms around him, and try to bring him back”… says Debbie

Do not be distracted by anything other than helping your child

Helping should be our only focus.

Distractions can come in many shapes and forms . For instance, guilt may be one of my  biggest distractions

“I wish I'd learnt earlier just to focus on what is needed in terms of help, rather than trying to find out what "caused" the autism”. Says Mysh

Do not think that if your child is Higher Functioning  or has Asperger that they do not need help

“I wish I knew that my "high-functioning" child likely needed just as much intervention as many children who are affected more severely. Just ones that were appropriate to him. should have pursued some very necessary behavioral and social interventions much earlier than I did.
I read a brief on asperger's from the Yale Child Studies center earlier this year that stated something like. "although asperger's is considered to be a "mild" form of autism, it is in no way a mild neurological disorder." I wish I had come to terms with that fact earlier in our journey” says Mamakat

Timing of each therapy is very important

This is another aspect of the custom home program.

Many things are more useful when the child is ready for them

In our case, the first year of floortime, was very heavy on sensory diet and really not trying to climb the developmental ladder

Later on, R was far more receptive to other teaching

“. .......rewind back to Nick's younger years and the amount of stress I had wishing he could have more friends. What I didn't realize was that HE had to want it. Once he did, it became easier......now organizing for his 21st birthday and he has had to cull his birthday party invites to 80 of his closest friends”. Says Mysh

Don’t feel like you need to try out everything

This is another huge pressure on autie mums and dads ; the feeling that each tool untried, is that elusive something that might  have “worked”

I get that weird feeling in the pit of my stomach again when I heard other moms  talking about ABA, the local autism summer camp, and a bunch of other things that we have not done, not been to, not tried, etc. It's the feeling of "should I have been doing that? Look what we've missed out on" etc. But intellectually I know that this isn't the way to feel, and that we've been doing what was appropriate and needed in our case, which isn't necessarily the same as other kids on the spectrum would need. {sigh} We're way past early intervention stage, but I still wish I could get a handle on this feeling....Says Jennifer .

Don’t forget life

“I think therapy makes a  big difference. But it has to be weighed with the pressure it puts on your whole family... Cost, time, work” says Molly

Your child is still a child, don’t forget to enjoy them

 “I wish I'd had more support in just enjoying my child” says Karen,

Almost all of the encouragement and support was geared toward worrying about him and trying to change him. Very few people encouraged me to enjoy him, but I did find a few of them and they saved me from a lot of fear that would have otherwise overtaken my life.”

Don’t think that 5 years is the deadline

“There's always time -- there isn't truly a "before 5" clock and kiddos can always make progress at 5, 8, 14, 20 . .” .says Heather

Think long term and Have a vision of your child

For me and DH our vision for R has been Happiness, Self Reliance and Goodness.

And so far he is doing very well on 2 of those things and making progress on the third

“There is so much necessary therapy early on and all you can think about is my child is a baby, just barely 2 and you want him do what for how long? No one sits you down and says this is the plan and i know it sounds crazy but if we do this for 3 or 4 years and reevaluate the plan based on his development from time to time then we might be able to help him, but if we do nothing, then so will he “ says Danielle

Make sure your focus is foundational and not cosmetic.

“Make sure your therapy goals Focus on long term objective.. and not on things like reducing stims.. just because your child looks odd “ says Atul

Building on Strength not just deficit fixing

I think this is a very important concept that does not get used much. Everything that the child loves and is good at should be used.

Use words like “gifts” instead of using ( or letting anyone ) use words like “splinter skills” to describe an ability that your child has

The reason I am not crazy about therapies and do not see that they account for the majority of Alex's growth is that a lot of therapies are deficit oriented (based on deficits, of course) and highlight what is missing in a child. Since we got away from deficit orientation and the intention to fix, we've focused solely on appreciating what is going well. I think that for us, in our home, focusing on the many ways in which Alex is capable and sensitive and wondrous snowballs every minute into bringing about more capabilities, etc. That is where I see his progress springing from” says Karen

Down Time

While its tempting to schedule every minute and feel that that is the right thing to do , more is not always better  

“Autie kids deserve downtime .. just like any other kid…. R is going to have 7 hours of school and 1-2 hours of therapy everyday .. that is a 40- 45 hour work week .. the rest of the time he can do what he wants .. he deserves it.. and he does not need to feel he is doing something wrong ” says Atul “not only is unstructured time  helpful for him  also provides a venue for him to grow independent thinking. After all the goal is self reliance ”

Psychological impact of your therapeutic choices

The atmosphere we create for our  child is in our therapeutic choices is crucial  

“If all day they are being corrected and told what they are doing is wrong .. what kind of impact will it have on their self esteem ?” asks Atul

Just think of how little and vulnerable  our kiddos are when they start therapy .

While  its important to  acquire skills , its very important to remember, that skill acquisition needs to happen through play and with love and gentleness

I think its very very important to surround your child in an atmosphere of unconditional love and approval.

That- though we are putting all this effort into helping them blossom for tomorrow  - we truly completely and unconditionally love who they are today

 This post has been written for the fabulous Danette's SOS Research Best of Best Bloggers.

 For the past series click here  . .

This month's topic is  Therapy & Special Needs. To read what other bloggers have to say go here