Saturday, August 13, 2011

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 5th 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, worksays 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

21 comments:

Mr. Daddy said...

It would seem as if R was the best thing for you and your DH, like you said not the Autie in him....Just him. And R is so blessed to have you both. If I didn't have such great parents I would want you to adopt me...LOL

Di said...

That was a really great post, thank you! :)

Allison said...

I love your posts. Thank you for sharing your knowledge and that of so many of your friends. So many different opinions really brings home your idea that 'there is no one autism, just many different ones.' I am going to copy this and share with my whole family.

rhemashope said...

this is an excellent resource. i will be referring many to this post. i love all the quotes from other parents. understanding that you must understand your child's autism is such an important point. my heart melted when you wrote about the therapist saying that R loved you more than any reward.

TherExtras said...

I am happy that you are interacting with such a supportive and smart group of parents. Please give each of them my gratitude for sharing here. Barbara

Trish said...

How wonderful to hear all of these perspectives together in one post. Thank you for taking the time to gather so many people's comments!

Lizbeth said...

This is an excellent post! I love how you emphasize that we, as parents, are the experts on our kids. All too often I have therapists, teachers, etc., telling me what will work. It took me a little time in the beginning to realize I was the expert on my son, not them.

jazzygal said...

Some excellent advice here...well put together. Labels are important...insofar as they help us gain access to therapies;-)

I wish i'd known about facebook and twitter when we started on our journey!! then I could have found so many helpful blogs....

xx jazzy

Tanya Savko said...

You have such insightful ideas and have included some very helpful quotes and suggestions. Another excellent post!

Patty O. said...

This is fantastic! I agree with them all, especially understanding your child! So often I will get frustrated at my son's behavior, only to figure out there was a reason for it. This post should be mandatory reading for all autism moms!

D. S. Walker said...

Your vision for R is perfect and I love that you make sure everything is given a positive spin. R will be fine because he has parents who love him in his corner. You have a wonderful awareness of his needs.

Magnificent Minds said...

Written with care and great knowledge; thank you for sharing this.

janmomof2 said...

So much of this resonates with me as we go through our special needs journey with k. Particularly meaningful as we face the start of school

Martianne said...

What a comprehensive post. Thank you! I will be sharing it with others... Also, the part about "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, was heartbreaking and really made your point. Wow!

Lisa Quinones Fontanez said...

FANTASTIC POST! I say that too, If I only knew then what I know now. But I always appreciate learning new things and insights. It helps me plan and prepare for the future.

Spruce Kids said...

Fantastic post! wow..so resourceful. i'll direct ppl to it via our blog and other sites. so many will find this helpful.

Julie said...

there are so many good things written here! thank you for sharing!

Dani G said...

There is no Autism; there are Autisms.

So great. You're awesome. I'm so glad you're a part of my life!

Anonymous said...

Thanks for support.

Jenny S-A said...

I am again, loving your blog.

We have just reached our max in therapy appointments & scheduling with our son. We have the exact Speech, ABA, OT & DI that we have been struggling to get through EI & privately, plus his part-time mainstream daycare & fun gym class. Add it all up & it doesn't look like much on paper - but it's all we can do - we need free time in our lives, the kid needs breaks, time to play aimlessly, time to just chill & watch Disney & Sesame Street.
I wish we didn't have to do therapy at all - I wish we could just figure it out on our own, gently, lovingly at all times - I hate when we have to push him to make sounds or sign or find something through PECS when he wants something - even when we know what he wants, just so he'll know how to do it when we won't know it already. But we went through a really hard time when we could not figure out what he wanted & he would get so incredibly upset & it broke our hearts even more. So therapy we will do. And someday, I hope that we will be able to do more on our own - no matter how wonderful our therapists are - just so we can just be. simply be.

Floortime Lite Mama said...

Thank you so much for all your kind comments
Jenny S-A
I know exactly what you mean
our kids are such babies and they have to work so hard :-(
I remind myself of two things - one its so necessary and second we can do many things to make it fun

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia