Sunday, March 27, 2011

Pretend Play and Autism


The absence of pretend play skills is an indicator of autism.

Many developmental models talk about the importance of pretend play in healthy development

Pretend play in my opinion is one of the developmental milestones that simply cannot be skipped over

In the Floortime sense its an entire developmental level

Some Speech Language Person say that Pretend Play is essential to the development of proper language ( as language and pretend-play both harness symbolic thinking ) and one cannot come without the other

I had mentioned R's play therapist in a prior post and my friend Tanya asked me to provide some more detail on Pretend play and I thought it may be useful knowledge for all of us here and I in turn asked Ms Gypsi to give a short description of  pretend play

Ms Gypsi is one of our absolute favorite people. She has known R since he was 3-when he had just started with the school system. She is extremely intelligent  has 7+ years working with young  kids on the Spectrum. 

An additional gift that she has is a super understanding of Spectrum folks as she is an Aspie herself

Each summer we try to address one important thing for R . Earlier we used to try and get ESY but we figured out that it was actually better for R to not have ESY and instead learn an important skill

Last summer we addressed Pretend Play and Ms Gypsi started to work with R last summer and he can actually play with toys now. 

Here is her interview from the fabulous Ms Gypsi Leigh

1. What is pretend play ?

As I see it, there are two different types of pretend play.

The first is direct object pretend play. I have a car and I am pretending it is a real car. I make engine and horn noises, I pretend I'm driving the car and that the car is just like my real car.

The second type is a more abstract pretend play. For example, I have a cardboard box and I pretend that it is a car. It has none of the features of a car; I have to use my imagination and stretch it a bit to see this box as a car. Both types of pretend play are valuable and important.

2. Why is play important for spectrum kids ? Why is it difficult for kids on the spectrum to develop these skills ?

Children on the Autism Spectrum tend to think in concrete terms, making it hard to understand things like jokes, puns, sarcasm and playing pretend.

While this is not true for every child on the Spectrum, it is true for many.

As a result, these kiddos need just a little extra help to see HOW to play in a pretend way.

Using the car toy as an example again, our kiddos might be more interested in the object itself—the color, any letters on the car, the wheels and how they turn—than in the fact that it is a car and can be played with as if it were a real car.

Play is extremely important for many reasons.

One, is because that is how children communicate and learn to negotiate with other children—through play. Playing together is the basis for all social communication and skills. If a child doesn’t know how to play, and therefore how to play with another child, then that child is at a negative for navigating the social waters with other children.

Two is that playing with the appropriate toys (imaginative toys, not battery operated toys that entertain and do all the playing for you) teaches a variety of skills without a child knowing it. Turn-taking is learned through play. Social scenarios are learned through play. Fine and gross motor skills are honed through play.

Third, as a child learns to play appropriately with toys, he or she looks more typical to other children. Should that be a number one priority? No. But, as an educator, my goal is help a student be as similar to typical children as possible, so that he or she will be able to develop social relationships with typical peers. When thinking of it that way, it does become very important.

Lastly, but probably most importantly is that appropriate pretend toy play turns into an opportunity for appropriate play with others, thereby increasing the opportunity for social interaction. This is especially important for interaction with parents and siblings. Tossing a ball back and forth gives a chance for eye contact as the ball is thrown. Play food and cooking gives an opportunity for verbal interaction about the food. Building with blocks give a chance to a conversation about what is being built.

3. How do you teach pretend play ? Can you give some examples

As is expected, it’s never easy for a child with Autism to rewire how he or she thinks about playing and to begin with it is often a challenge and rather painful to the kiddo.

R, for example, was interested in the dollhouse people, but he wanted to hold them and look at them. He did NOT want me to tell him how to play with them. At this point, one treads very carefully.

We’re not here to break a child , we’re here to mold and shape the child

The most important thing to do first, is to show just how darn fun it is.

When I start with a new toy or a new play routine, I am going to am be as overly enthusiastic and energetic about how fantastically marvelously fun this is as I can without seeming phony.

And, because I happen to love what I do, it’s pretty easy to have a great time!!

 For example, I would sit by R, with one of the dollhouse dolls in my hands, and have a great time taking her up the dollhouse steps. “Up, up, up, up!” I would say in an animated, happy voice.

Some example of the props that Gypsi uses in our house to teach pretend play

R's dollhouse

R's little people Village


After doing it several times, if he wasn’t yet watching I would say, “hey, R, watch me!” and do it again.

If I still couldn’t get him to watch, I would gently say, “hey, R, it’s my turn for the dolls,” take his dolls and then ask him to watch.

After he watched, I would say, “your turn!” and give him my doll and guide his hand to take her up the stairs, verbalizing the “ups” for him.

Then I would give him his dolls back and back off of him for a few minutes, while I “played” by myself, still being very animated and using simple verbal phrases as I played.

Then we’d repeat it. This would go for fifteen minutes, then the timer would go off, I would show him the schedule and let him know we were all done at the dollhouse and what area we were going to play with next.

I didn’t try to throw in a lot all at once.

Master one thing—taking the doll up the stairs—then add in another. This would be an example of the first type of pretend play I mentioned.

He has come so far, from just holding the dolls, to being able to tell me the dolls are shopping or sleeping or other activities.

In addition to the actual play, because his verbal expressive language is still limited, one of my main concerns was giving him appropriate phrases to use as we played, but not overwhelming him with a lot of extra verbiage. When a doll went down the slide, I would say and excited “WHEE!” or “That’s FUN!”. When a car crashed, I would say “OH NO!” or “LOOK OUT!”.

Simple appropriate phrases, that he can take an use when playing or in daily life. We’ve noticed that he has taken these phrases and done just that!

Another example, and one of the more abstract type of play, is teaching a variety of ways to use blocks.

When R and I first started playing with the large cardboard blocks, he was comfortable stacking them, but that was the extent of his repertoire and pushing him to new activities made him very nervous.

As I did with the dollhouse, we proceeded very slowly, with me showing it as a lot of fun.

We would first stack and then I would knock them over, in very exaggerated language, “uh, uh, uh, uh OH!!” and would laugh and tickle him and we would laugh together.

As he began to find that fun, he would build, knock down, and request a tickle, so that the experience of building and knocking down was very positive to him, because it finished up with a preferred activity, a tickle.

Using his love of musical instruments, I showed him to pretend the blocks were drums.

Later I brought cars into the block area and we made a road of blocks.

After that, I added tools to “build” with the blocks. We also built animals and letters out of blocks. All of it done gradually, first doing the activity he had become comfortable with and then the new activity, then back the comfortable one with lots of verbal and tickle reinforcement (as well as bubbles and preferred treats) along the way.

Now, as you know, he builds a giraffe by himself, as well as roads, houses and other things, and plays with these blocks appropriately without needing to be prompted to play.
Our children on the Spectrum are capable of doing so much, and pretend play is one of these things.

It just is going to take them a little bit longer (sometimes a whole lot longer) than it will other children, because it doesn’t come naturally to the way their brain is wired. Patience, continuity, practice and reinforcement—those are the keys.

Wednesday, March 23, 2011

March odds and ends


Has finally sprung – goodness how gorgeous it is !

In the cabin on the weekends we spend all weekend outside

DH has started to accompany me on my walks which is very nice

He says he finds couples who hold hands in public – too sickeningly sweet.

He claims that this means that they are trying to show to the world how much in love they are ( to him this means they must inside their own heart doubt it )

Of course he has made a big mistake by telling me this .

And so every time a vehicle is about to pass us – I clutch his hand and gaze at him – all vapid adoration
I think every marriage has a theme and ours is playfulness

We love people watching – the cabin we own is in a giant complex of many cabins – many of which are rented out

The body language will easily help you differentiate between the owner and the renters – the renters have an "am I acceptable?" look on their faces while the owners strut around proudly

Many of the owners have rented their cabins out . Some like us use it for the weekends. Others ( retired couples ) live here permanently

Our neighbors are a retired couple who are very very sweet ( Lydia also bakes the best peanut butter cookies ! )

They are very relieved to have us as neighbors. The dynamic in our community is that those who rent out their cabins are the worst ( as renters can be loud and annoying )

Those who own and live there permanently are better thank those who rent

But the best ( like us ) are those who own and only come for the weekends

 Has gone somewhat by the wayside with work trips and friends visits etc these past 2 weeks and I am planning to get back on track

We never stop doing Floortime as its our general philosophy.

But as sessions its becoming difficult because I have been very distracted

Cincinnati trip
I have a work trip to Cincinnati - smack in the middle of Spring Break – so DH and R come along

We stay in R's beloved Hilton in Downtown – oh how he loves hotels

The first night we go to a restaurant called Capanellos( sure I am spelling it wrong )  – its very late as we have been late driving in

They take an HOUR to make pizza

I am about to have a meltdown but R is such a good humored thing – that I have to follow his example

He asks for the Pizza every 10 minutes but otherwise plays happily with us

We do hide and seek with the ubiquitous numbers –

We have a pretend happy birthday with the candle  that they have provided and its great fun

I am just about to post an "I am so annoyed" type facebook status.

However  the best pizza I have ever eaten in my life comes out and I have to cancel my update

When R and I start to walk back - I start down the wrong path – R points to the right road and says to "that paf( path ) is not clear" – this is a Diego script that he has used .

I love love love the way he scripts and mentally thank Nancy Kauffman for showing us that scripts can be important language scaffolds for Auties .

I also love the fact that he has inherited DH's sense of direction – not mine

While in Cinci – I am at work all day and DH takes R to the children's museum, the pool etc

On the way back from Cincinnati, DH and I play Antakshari - this is a very common game in India

The simple rule is that you sing a song and then the other person has to sing a song that starts with the last letter of what you ended on

Example, If A sings "aint no sunshine when she's gone"

B has to sing a song that starts with "n"

If B cannot, B  loses a point

All bollywood movies are musicals and so our song repertoire is MASSIVE

DH and I have a great time but R  suddenly bursts into tears and cries his little heart out

I later realise he was feeling left out because he goes to the computer and makes him sing with me

I tell my mum of this later. She says R is an "Ekolshada" - A bengali term which means a personality that only likes to be alone or with one other person  and form a "separate world" with that person - they dont like these persons to be forming a separate world with someone else

She reminds me of when she was visiting when R was 2 years old and folding laundry - she had put her clothes and mine in one pile - when R smelled all the clothes separated mine from hers and threw hers away

 March has somehow been overwhelming for me

The house has seemed perpetually messy,

I feel like a walking to-do list

I am never fully done with anything and yet have no free time

I have fallen back on Floortime

I am angry with myself and also feel put upon

This whole cycle of sadness has been triggered by the realization that R will be in first grade in August.

This has suddenly made me realize that he will have school till 3.30 - 5 days a week !!!
Does this mean his home therapy program will have to end?

If we continue with a therapy hour in the evening what time will I get with him ? NONE

I don't believe in the time- line thing( "teach everything before they turn 5" is a stupid myth) - but I have started to feel that the logistics of school will get in the way . ( Especially since R no longer enjoys school :-( )
We have so much more to teach him and now we will have no school-free time
Plus a truly horrible feeling has resurfaced - the one my friend T talked about to me once - that he would have been so much better off with a better mother

I talk to my online friends who are really a great comfort

And then DH and I have a long chat problem solving on Saturday – which is his special skill

Problem : House always messy , Solution : see if we can afford weekly cleaning instead of every other week ,

Problem : How will he get his afternoon therapy . Solution : Have modified day written in IEP for him so he can have some therapy in school and DH will pick him up early for his OT session. So I can still have some time with him in the evening

Detoxing from the melancholy

DH and I watch the Sporanos in DVD ( our new addiction )

I pause the disc, to go watch the Super moon come out from between the clouds

Bits of my week came back to me like trailers from a movie

The worry of the month has to make space for the happy bits that are crowding it out

R holding my face earlier that day  and cooing "happy face"

DH beloved voice telling me " Do you have any idea how cherished you are ?"

Some days happiness comes easy and wraps me in its radiant light

And some other times happiness is a decision.. something I make up my mind to be

But always I pursue it.

And always in these woods, I find it

The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be and that God wishes to see people happy, .
                                                                                          Anne Frank

Saturday, March 12, 2011

There are other choices

Last Sunday I was downloading Autism podcasts on my Iphone and I stumbled upon the famous Deborah Fein podcast on "Autism and Recovery" .

In this podcast , she talks about indicators of "Optimal outcome" ( indicators being no cognitive impairment, resolving language issues etc and optimal outcome being to become indistinguishable).

And, four years ago,  I remember evaluating R against each of those indicators

Desperately clinging to those that indicated that there would be an "optimal" outcome.

It seems strange today to think of how I clearly saw our life stretching ahead in front of us

Only two roads ahead of us

Road 1 : recovering from Autism and living happily ever after

Road 2 - not recovering and being en-route to  Destination Desolation. A landscape is marked by broken marriage, ruined career and lost friends

 As time passed  it became clear that we would not be among the "recovered" families who go on to write the books.
Those books that as a newly diagnosed mother I read with such hope and urgency

But even while accepting that Autism would be part of our lives forever  -the way I thought about  it started to change 

Aimee Mullins describes brilliantly on TED what I had started to believe was true

"Perhaps the existing model of only looking at what is broken in you and how do we fix it, serves to be more disabling to the individual than the pathology itself.. I think the greatest adversity that we've created for ourselves is this idea of normalcy. Who's normal? There is no normal. There's common. There's typical"

And so I started to look at my life, my child , and my marriage with own eyes

I also started to see that the road map I had been given was a faulty one

There was also a third road – that the first panic had not allowed me to see

A road where I see R becoming autistic and able, my marriage stronger, my relationships better and my life happier . All with Autism in it.

Autism is not a choice

But there are many other choices in life after Autism

Choices about the way we feel,

Choices about how it impacts  our marriages and our lives

All the time I spend searching

All the time the real answer was not out there

The answers were  with me all the time

In how I see things and how I feel about them

"The end of all our exploring will be to arrive where we started and know the place for the first time"
- Thomas Wolfe

Not to say that  this third road is always easy

Sometimes I get a mini-panic attack -thinking of all the things we need to teach and all the time I have not fully used

The Dementors of the recovery road call insidiously sometimes. " You-could-do-better-if- you-tried- harder" they whisper

I wind up this post as  R is calling me to come and play with his Santa Village

"Come to me my angel" he coos (using my usual endearment for him )

And his sweet voice is the only voice to hear

I write this post for the Danette's fabulous  SOS Research Blog .

Her blog topic for this month is on how invisible disabilities affects our family and life etc. 

In our family we have found that we must make choices in how we are affected

And the act of reflecting  and making deliberate choices has made our life a better one

Saturday, March 5, 2011

What I wish I had known about Autism 4 years ago

Its 4 years since D-Day ( diagnosis day ). I recently did an interview for a Grad Student who was doing her disseration on Floortime and in the interview I talked about the early days

As I relived those early days, I remembered  all the worry and the anxiety

It made me think of all the things I wish someone had told me and so I decided to update the post I wrote a year ago on

What I wish I had known about Autism 4 years ago

What I wish I had known about Autism 4 years ago

These are largely my opinions formed through my own experience, discussion with my husband, professionals and my online friends

Will my child ever talk?

I believe most children will talk. The small percentage who don’t - will also - given sufficient time and resources will be able to communicate meaningfully

Do not think of talking as the holy grail

My friend Lillian says – “When your child with autism talks . he will be a child with Autism who talks”

Another friend Karen adds “So many parents, including me, hold talking as a holy grail, when in reality it's just another form of communication with an autistic child”

In Autism the entire game is about communication

Embrace PECS, Sign language( if you child does not have major fine motor issues ) written language ( if your child is hyperlexic ), augmentative device – whatever to communicate

Some people gave us some very bad advice that using PECS etc would slow down language

Luckily other people and professionals helped out and we started using PECS ( now no longer really need them )

All these tools will help with the talking .

To read more on my take on talking go here

Are children with ASD mentally handicapped or will they be Savants?

I think that many autistic children who are diagnosed with MR do so because of their problems with language.

They may not understand the questions being asked of them , they may not have the motivation to answer these questions and they may be distracted by their sensory reaction to the environment

Then there are problems with Processing Speed

And my personal opinion is that there is a lot of fear and anxiety in autistic children and this significantly slows things down. ( Temple Grandin says that the primary emotion in Autism is “fear”)

In terms of Savant skills - there are the exceptional savants of course .

But one of the criteria for diagnosis which is stereotyped and restricted interest potentially could allow for unusual focus in one area.

This ability to focus may be the source of excellence

For example, Malcolm Gladwell in “The Outlier” says that if you spend 10, 000 hours doing something you will become an expert in it

No wonder my son’s focus on numbers allows him to do things that you would not typically expect

But expecting unusual intelligence as a sort of compensation for having a disability is setting yourself up for a disappointment

“Why expect more from an Autistic child than you would from a typical child?” says Atul

Will my child be okay?

I used to ask neurologists etc about prognosis in the early days .

The implicit assumption is that someone has the answer.

But I don’t think anyone does

Donna Cooper says “Only god knows how many apples there are in a seed “

I think R will be okay in his own way. ie he will be a good person and I also hope he will be independent and self sufficient.

I think he will also be able to have loving relationships ( already does )

We have done best by keeping our eye on the big picture of what is important

Normal is not a goal we necessarily strive for

What causes Autism ?

I think the initial journey we spend a lot of time wondering /researching what caused Autism

We secretly wondering if there was anything that we did to cause it.

All mothers, as Vicki Forman says in "The Lovely Life”,believe that they can prevent anything bad from happening to their child if only they pay sufficient attention

You can start to wonder if its the coffee you drank while nursing, the Baby Einstein DVD's you pressed the replay button on, the hours you spend doing chores etc and not playing with your child etc

This is simply not true and to always gauge yourself against the bar of the perfect parent you should have been will drain away your joy

“No do overs folks” says Tanya

There are many roads into Autism and really no one knows the true cause of each child’s autism and the journey each child will take on this road

Is Autism a good thing or a bad thing?

There are many points of view on this.

I suspect it depends on the kind of Autism our child has, our general philosophy in life and the way we cope

Sometimes due to my general optimistic stance and my pride in R , I get asked the question "Would you take away R's Autism if you could"

This is the ultimate pointless question because the option is not on the table and never will be .

(Having said that if a fairy godmother granted me a wish – I would whisk away R's Apraxia and his Sensory issues without missing a heartbeat. Like most parents I simply want the best odds for my child)

What is the best way to help my child?

The most important thing while helping your child is to understand what your child really needs and what all the methods really offer in order to develop a custom home program

Jill Escher in her blog says it best “Custom home program. I hope this phrase enters into the vocabulary of all autism parents and professionals. 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.”

All the methods have their pros and cons and its largely the quality and quantity of intervention that will make a difference.

A lot of the specialists will say that their method is the best or that you cannot combine two methods ( - but I think you can. In our case ABA has flowed quite well with Floortime)

While we learned and continued to learn a lot of Autism from all the specialists - there is only two people who are specialists in R -

Mum and dad !

The sort of therapy naturally appeals to you will depend a lot on your instincts.

And on your child

If you are a parent that is more a player with the child you may find Floortime /Sonrise/Hanen /Play Project appealing
If you are more of a teaching-parent – you may want to first look at VB/ABA and RDI

Another really critical thing to look at is the resources available in your area –

Its tempting to want to do it all yourself – but I find that the hour in the evening that R has with his therapist is critical for me to sort things out , get dinner organized etc and then I can play with him after his therapist leaves .

Its also very important to not judge other parents

JdinTLH says "It is terrible thing that we assess each other based on which "camp" we fall into, DAN, ABA, vaccines, or none of the aforementioned. It limits our ability to support each other and it fosters a reflexive defensiveness about the choices and decisions we make for our kids.
There is no specific recipe that works for every child; if what you are doing works for your kid, bravo! Let's keep the judgmental opinions to ourselves and celebrate every bit of progress that our kids have, regardless of how they achieved that progress.

Will life always feel this difficult?

I truly believe the days after diagnosis are the worst and that things keep getting better.

Much better

For one, slowly your gain expertise and learn more about what to do

Meg says “I always call myself a "therapy mom" instead of a soccer mom. We know every agency in this area between the 2 kids, I have people in and out of my house 7 days a week--it's the norm here. People call me to find out the best therapy for XYZ problem (even not ASD related)”

Second we learn better on what to feel

Lillian adds “Coping mechanisms include (but are not limited to) developing hobbies and other outlets , rethinking autism ("it's not a disease, it is actually quite normal because a guy with super-high functioning Asperger said so"), experimenting with pharmaceuticals (I think I might have anxiety , so I'm on Lexapro now), getting more philosophical ("I saw a kid with cancer, we are truly blessed because it can be so much worse") , yelling at your spouse ("you have no idea what IEP even stands for"), shifting blame ("must have been the mercury"), blog writing etc."

In my family, we have found It very important to write our own recipe for happiness.

We spend no time thinking about lives that others have or the life we could have had without autism

We also find it critical to remember that it’s R’s life, not ours.

And his version of happiness may be different than ours

Atul commenting on Parenthood ( the scene where the dad is lamenting that his Aspie son Max could not have the happy moment ) says “ Why does Max’s happy moments have to be the ones his dads thinks are happy ? Why can’t his father enjoy happy moments that Max defines and creates – like playing Bug world?.. Why do they always set themselves up to fail by creating these situations where they want a typical-child-moment and then mourn when they cannot?”

My friend L says “The basic root of my problem… I keep wanting my very autistic kid to behave like a non-autistic kid, and guess what- he sucks at it. And guess what? I keep getting upset over it and write endless blogs just stating the obvious. I swear, sometimes you get sucked up in your own little vicious cycle of emotional wheel-spinning, and all you need is someone to wake you up.

Do the specialists know best ?

Depends upon the expert- - We have found WONDERFUL experts and some not so wonderful ones

Leaving it all to the therapists has dangers – nobody knows your child as well as you do

Heather says “He is an alternative child .. so he needs an alternative approach

My friend Debbie says “I wish I knew that autism presented in many different flavors. That some kids did better with models/approaches other than ABA. “

Molly adds “With a diagnosis of autism, its as if you've been given the job of CEO, CFO and COO of your child. You are in charge of a new kind of corporation within your family. You get to choose what vendors to work with, you get to choose what money to spend on those vendors, you choose how your child's activities will be structured. However, just like the executives of a corporation, all of your decisions need to be based on the facts on the ground, what's available and what's called for, in corporate speak, those Market Trends, but more importantly, you need to base your long and short term goals on the output and productivity of your child, what he's capable of today, and how you'd like to see him in the future, with the course corrections and the reorganizations that are so typical of big businesses. If you are too static and too staid in your course, your child will become disgruntled. If you are dynamic and ahead of the curve, you and your child with thrive”

Nidhi adds  "Limit the advice you take from therapists/experts to their field of expertise. Don't listen to your OT regarding communication strategies or your Psych regarding speech goals and so on.
This is rather obvious but it has been very helpful to me. I would get swayed by anything anybody said, at first. Obviously, there are some therapists who are exceptions. But for the most part, it's a good rule of thumb.
An OT giving advice in pretend play, not so good. Have your psych/play threrapist do that. OT giving advice on sensory diet, great"

Will my child recover ?

I think one critical thing to do it to change your mindset from Recovery to Progress

I spend a whole lot of time looking for the magic bullet – read every “recovery” book

Went to all the experts

There are many books which describe the despair of the diagnosis – then the parent who searches out a method – Applies the method, sacrificing all, to the recovery of their child

And then their child recovers

However I find there are many parents who also worked heroically whose child did not recover.

These parents are just as heroic- I know some heroes personally.

Its just that their stories are unwritten

Plus while these stories are inspiring – there is another implication which can be very damaging to your happiness.

This implication is that if your child did not recover – clearly you did not do a good enough job - this is a TERRIBLE thought to live with and is simply not true

DH and I tend to focus simply on Progress

One of my friends says that the definition of success is that you are battling a different battle this year than what you were battling last year

Very true

My good friend Lillian’s advice is “Celebrate progress -Yes, it is progress, quit being so picky about it !!!”

Don’t think your child not doing what you wanted for them is a bad thing necessarily

 Kat says “The biggest thing I have learned is that everything I held dear in my imagination about what I hoped for my child was right only for me. My child is not me and has a completely different life trajectory than I will.”

PACE yourself

And be kind to yourself

Guilt , grief and anger are very bad companions on this journey

A positive outlook is CRITICAL for you and for your child and your spouse ( and your other children )

P says “Next came the I'm going to do everything I can and research all the treatments and try everything. Then after 3 years of working my ass off he'll be "fine" or "cured" just like all the books say. Ha. The only thing I accomplished is burning myself out. I still haven't recovered. When they say it's a marathon and to pace yourself, they're not kidding!”

Another dear friend Ellen  says "Don't let all the "warrior mom" stuff go to your head. Yeah, you will fight hard for your child, but lots of moms do that, not just those in the autism community. I learned how to be a fighter from my own mother, who had no special needs children."

What does my child REALLY have ? Is it Autism or something else?

Autism is a HUGE umbrella .

Don’t be scared of the word

We found that its best to simply focus on what R needs- not what he has .

This will change over time – the challenges we needed to conquer in the beginning were for R to simply have some receptive language – then we discovered apraxia. Then SPD.

Christine and Tanya say “Don't get caught up in the name - PDD, PDD-NOS, Mild, Moderate, Severe, High Functioning. It doesn't really matter. You have to look at your child and their needs and goals. The name doesn't really make a difference”

My friend P says “one day there will be 32 diagnoses in place of what is now called Autism

What will happen after age 5 ?

One of the worst myths about Autism is that we need to cram in all development before the age of 5

This is simply not true

For R almost all developmental leaps have come after the “expiry date” of all development

The thing about Autistic people is that they keep learning all their life” says Temple Grandin

There was this story about an autistic child who grew up and beat his mum to death? Is that my future?

While there may be some autistic children who are violent and a danger to your safety - I have never met one!

The autistic children and adults I know would not hurt a fly.

Its very important to not read horror stories and imagine that to be your future.

If this is indeed in the future - worrying about it will only drain away your present of joy - as my friend Mysh says .

If indeed this were to happen of course we will need to put safety first - but there is no necessity to anticipate this.

Another thing to remember is that aggression in toddlers and children does not equal aggression as adults

How to deal with the things people say

Ellen says “Your child's autism can be an opportunity for strangers and loved ones to be incredibly insensitive. Try to see the difference between the people who are invincibly ignorant and the people who mean well but just don't get it. The former are incorrigible but the latter can be taught. Be patient and understanding, just like you want people to be patient and understanding with your child. “

People usually mean well even when they say insensitive things .

Lillian describes some insensitive comments

“Here is my top things of what not to say …1.It all happens for a reason , God gives special kids to special moms etc

(because the chance of finding a new ASD mom who is truly cosmically inclined at that moment is low).

2. It is still the same wonderful child (duh !).

3. It could be so much worse (sure....feeling better already)

4. He is a very special kid (um....yeah, I think we already established that)”

When you face judgment remember that only you walk in your shoes

Kat says about the writing in books like the Tiger Mom book

This woman has no idea what a luxury it is for her to be able to remain stuck in her own narcissistic viewpoints and do things her way, and not have to face any life challenges that might disrupt that path and challenge every damn bit of her parenting dogma.”

Don’t over pathologize

Your child is still a child

My friend Debbie says “I wish I knew from the start that he was there, that he was in there. He was present, full of emotion, and intelligent, even if he was puzzling to me.

I wish the time period immediately post-diagnosis where I stopped seeing him as a child and started seeing him as autism. …. I wish I had never done that”

A note on DAN

We do some DAN –we don’t know how much of a difference it made but we wanted to make sure we gave R the best shot so we went to a DAN doctor who is also a regular MD

Be careful of who you choose

A gem of a quote from Lillian “No, DAN! doctors are not immunologists, toxicologists, pediatricians, microbiologists bundled into one. For the most part they are family practitioners with a 2-day course who quit taking insurance. “

Is my family’s life ruined ?

It really does not have to be .

My husband and I have found ourselves happier after autism than before autism

Molly says “I just think it's amazing how autism changes lives, how many people redirect their energy once they've seen the light.”

Please don’t misunderstand. I am NOT saying Autism is a good thing to happen to you .

All I am saying is that happiness and joy are very possible in life after autism –

I have found my life more enriched in many ways after autism.

In how I see things

Like Mysh says “ Having a child with Autism has totally changed my perspective on things. I appreciate so much more these days as I think we all do”

In my own personal growth

This mom – Kyra - writes “I’m better for my experience with our version, not just for the obvious fact of my son's precious presence in my life but for what I’ve learned over the last few years, specifically about narrow places within myself that needed widening.”

Another gem from Lillian“-Shit happens. It could be so much worse.”

Don’t forget you

I cannot over emphasize the importance of self reflection and self-compassion on this journey

At the center of all you plan to do, is who you are

Never forget that

Observe for signs of PTSD - mom-nos wrote an excellent article here last month

Reflect on the things that make you uncomfortable and reflect whether it’s to do with your child

Or to do with you

Annie says “ All of these years I have been so defensive of my son and I have assumed that everyone didn't like or accept him. I am learning now that that was just my way of not only protecting him , but also protecting myself”

Karen says “There is no way that a parent can mentor her child socially if she herself is consumed in fear”

She adds “Your life is what you choose to focus on. How I perceive my experiences and what I choose to think about and view are completely up to me - every minute, every second. What we focus on is what will grow.

These, therefore are the gifts in our unique journey

The first gift is the shift in focus. An opportunity to press the reset button on life. Shifting your focus to what really matters.

The second gift is enjoying each small step and taking nothing for granting

The third is enjoying our children’s childhood in slow motion

Finally the fourth gift is the lovely people we meet.

And so this is what I would tell the worried K of four years ago

It may not be what you thought it would be.

It may not be easy and it may not be fair

But it can still be very very good

And it will 

Another random week in 2020

 Everything that I could say about 2020 has probably been said.  On the whole,  its not as bad as it could have been because I am with my tw...