Friday, April 2, 2010

What I wish I had known about Autism right after diagnosis

Writing this post as April 2 is Autism awareness day –

Thanks to some of my online friends who have given me some of the advice – If you have any advice – please comment and I will add on to this post and make this post more robust and provide it as a link on the sidebar
Hopefully some parent with a newly diagnosed child will find this helpful

These are largely the opinions of me formed through my own experience , discussion with my DH, 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 answer to all your problems though – My friends L says – “when your child with autism talks . he will be a child with Autism who talks”

Another friend K 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, 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

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

I think that many ( not all ) 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

And there will be most children who are neither Savants, nor have MR – like R

Will my child be okay ?

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

But I don't think anyone can really answer this question.

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 should I not waste my time on?

1. Wondering what caused Autism ?

( secretly wondering if there was anything that you did to cause it )

All mothers, as Vici Forman says in "The lovely Life" ,believe that they can prevent anything bad from happening to their child if only they pay sufficient attention - - and you can start to wonder if its  the coffee you drank while nursing , the baby einstein DVD's you pressed the replay button on etc 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

2. Wonder whether Autism a good thing or a bad thing?

It does not matter.

Example a lot of times I have been 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 )

3. Constantly Researching the best method to help your child

Frankly 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 or even Hanen or the Play Project appealing

If you are more of a parent-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 organize etc and then I can play with him after his therapist leaves .

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

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

M 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”

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 L’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

Another friend Kat says “The biggest thing i have learned is that everything I held dear in my imagination about what I hoped for 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 E 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

C and T 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
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 !

Most of 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

My friend E 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. “
I personally have found many many wonderful people in my life because of Autism

Don’t over pathologize

Your child is still a child

My friend D 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 – again its not been a cure-all and 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 guy who is also a regular MD

Be careful of who you choose

A gem of a quote from my friend who is a doctor herself “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 .

Dh and I have found ourselves happier after autism than before autism – I have a whole bunch of posts on it in the  button labeled  “Happiness “

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.

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


Mr. Daddy said...

K I have said it before and I will say it again: "You amaze me with your attitude and open heart and beautiful spirit".

I think that the line "there is only two people who are specialists in R - mum and dad" sums it up quite well.

Yours and your DH's love and commitment to R is the best therapy he will ever get.

And yes Shit happens, but it could be so much worse.

It is a blessing and honor to know you in boggy land. :o)

JAMR said...

K - you are such an inspiration. To have watched you along this journey since R was so young, until this post with all that you have learned, I feel blessed to know such a loving, knowledgable, dedicated mother as you. And R is the luckiest little boy to have parents who are as wonderful as you.

robin said...

Great post! I'm adding it to my bookmarks for great info for anyone that may come up later who may need info on autism...You're the best all round guru of this area that I know.

Brenda Rothman (Mama Be Good) said...

Great post and so agree. Hey, you changed your background! I love it!

Þorgerður said...

Great post and lots of gems. The kind of post I would have wanted to find two years ago when desperately browsing the internet to find hope and inspiration.

And yup "shit happens". No doubt about it.

Anonymous said...

Thank you so much for this. It's been a year and a half since my son has been diagnosed and it's still an emotional roller coaster for me. Part of the reason why has been disagreements among the professionals as to what exactly my son's diagnosis is. I really needed to read your advice to not get hung up on the diagnosis and just focus on getting him what he needs.

You write beautifully and your love for your son comes shining through in every word. Thank you so much for sharing your experiences--it helps me tremendously as I learn how to best help my son.

JoyMama said...

Pearls of wisdom! :-)

danette said...

K - I love, love, love this post!! Very informative and positive, full of great perspective and helpful information. My favorite parts - focus on progress (yes!) and there are only two specialists in your child, his parents.

I'll be back to catch up on other posts, but so glad I found this one. It's going in my "recommended reading" :).

walking said...

This post is so full of wisdom I don't know where to begin.

Yes! Talking is not necessarily communicating. Without the developmental communication milestones, you may end up with a talking autistic child.

Yes! Yes! On the processing speed and sensory issues. If you want your child to think, you m u s t s l o o o o o o w d o w n . . .

Amen to your timewasters and the great variability in the quality of experts!

Focusing on improving quality of life and pacing will save you from emotional exhaustion and promotes keeping your family intact.

I did not ask for autism for it completely derailed the plans I had in life. However, I am not so sure I would be the kinder, gentler, patienter person I am now had it not been for autism. So, my daughter is 21 and not in college, wowing people. We are a happy family and have grown closer because of her.

father of four said...

What a great post! ... very thoughtful. It's been only a few short weeks since we had a confirmed diagnosis of Autism for our 11yo son after many years of realising that he was on the spectrum somewhere and trying so hard to avoid that label. We have had some great practitioners and some not so great. None of them know our son as well as we do.

Anonymous said...

I love this post K...I wish I had read this about 6 years ago...I am so pleased that I have gotten to e know bring so much wisdom to the table...

-Heather (in Boston)

Unknown said...

you are amazing...your blog inspriring...wish i knew u personally.

Unknown said...

you r ur blog...very inspiring...krishna(sunnyvale, CA)

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