One therapy is not one size for all

I was excited to read this article this morning as it was about a case in our neighbouring Malaysia, (the google news feeds on autism usually derive from the western side of the world). I don't know why, but wouldn't you agree that somehow we always feel more interested to know more if it involves someone of a relatively similar background to us?..in this case, it's another South East Asian family.

What I'm most pleased about upon reading the article is that both Lim, the mother and Mary Ann Joseph, a seasoned therapist in KL, used behavioural modification therapy (ABA) as the main method of therapy for autism (along with a combination of others, where it is apprpriately needed, like sensory integration). It's important to remember that not one therapy can be effective for all children with autism (no one size for all), but with the number of available options out there, I can't help but agree with what Lim said, which was "“We owe it to our kids to at least try each therapy”. The article listed out behavioural modification, mediated learning, speech therapy, sensory integration, brain gym, play therapy, music therapy, biomedical intervention and diet intervention as some of the available options out there. (Though I think it's best to not try them at the same time because if you do see progress, you would only be able to pinpoint the right source if you try one therapy at a time. If treatment is mixed and your child does show progress, you can't ever be sure which particular one is contributing to the progress). Alhamdulillah, I am lucky in that I am already seeing progress in Raiyan from the first type of intervention therapy that I tried, but I can understand that this may not be the case for other families.

I admit I have yet to visit SMARTER myself to see the available therapies they have to offer there. However, I know some parents that have sent their child there but found that the therapy did not work with their children. Hence, their need to look elsewhere. As I have previously explained, the circumstances around Raiyan led us to K, his ABA therapist first which sort of precluded our need to go to SMARTER (for now). Syukur Alhamdulillah, the ABA therapy seems to be working well with Raiyan and he has made incredible progress to date so I will continue with that until if ever there is a point when Raiyan may not necessarily benefit from it anymore. If that happens, THEN it would be very helpful for me as a parent to be given other options to try, which may include those offered by SMARTER or other forms of therapy that is not already available in Brunei that Learning Ladders will try to introduce in the future.

This is another reason as to why Learning Ladders was set up. Not just to provide the means of getting an early diagnosis through ISADD as I have explained in previous posts. But to lay out more therapy options for parents out there to try. For those parents that have been sending their children to SMARTER AND have been seeing progress with their children through the therapy there, then Syukur Alhamdulillah, you have found the type of intervention therapy that works for your child. But for those parents who still have a niggling feeling that more can be done with their child by trying something different, I would personally highly recommend you just try out behavourial modification therapy. If it doesn't work for you, then at least you can strike it off the list and then move on to another available option right?

10 comments:

Anonymous said...

i have a cousin who is trying to find a place to send their child but financial wise they have a problem SMARTER fee is $120 / month but still cant afford that how much is LL charging , i heard some low income family go to SMARTER despite not being able to pay as SMARTER want to help every one , so because of $$$ constrain they feel reluctant to send .... can give you opinion on this ... tq

Pweshes Mama said...

Hi and thank you very much for your query. Can I first ask you how old your nephew/niece is? And has your cousin properly diagnosed him/her? If yes, by who?

Before deciding on what type of therapy the child needs, we at LL strongly recommend that the child gets a proper formal diagnosis first by a child psychologist which we can help facilitate and possibly aid financially with via either an interest fee loan that they can pay back monthly or possible subsidy depending on the case and the state of our funding.

During the typical 3 hour assessment, your cousin can sit in and watch and LEARN from the psychologist interacting with and assessing her child. If your cousin or her child does not speak english, then it is advisable for someone (maybe you) to be there also to help translate.

This assessment is the most IMPORTANT thing to do because it will tell your cousin what her child's strengths and weaknesses are. Remember that one autistic child is ALWAYS different from another autistic child.

Once we know and understand the individual child's needs, ONLY then can we decide on what therapy that can help him the most, by focusing on encouraging his strengths and working on his weaknesses. As you know, autistic children can have some amazing qualities too and we should always maintain those qualities. The key is working on HIS weaknesses (hence one therapy is not one size for all).

It is only through the appropriate therapy can we then, insyaAllah, raise the chances of improving the child and making him independent one day. :D

The risk of sending a child to embark on any kind of therapy without a proper diagnosis is that the child may not be able to achieve his or her full potential because the therapy is not ideally customised for him or her.

Parents at LL are also like a support group to each other. Once the child is diagnosed, we can together help plan the therapy for the child in the best way we can help, whether it's by a therapist or by teaching the parent themselves what to do at home, with the books and resources that we have (you can borrow these otherwise expensive materials for free if you are a member).

Bear in mind also that LL believes that therapy should PREDOMINANTLY be on a one to one basis, as this is the best way to focus on improving the individual child. It is not advisable for an autistic child to be freely mixed with another autistic child during therapy because as I said, the needs of one may not be the same as the other's needs.

If you are interested to know more, please contact Sharina and Linda at Learning Ladders (their contact numbers are on the right side of my page) who would more than happy to give you more information, especially about the financial aspects.

The only advice I can offer is to say that before your cousin makes any decisions as to what to do next, she must first explore her options thoroughly, consider what outcome she hopes to get from the therapy and to what extent does she want to help her INDIVIDUAL child and the only way she can do that is by first getting a proper diagnosis.

Thanks and salams to your cousin and child :D

Lu Ann said...

Are you all qualified therapists to conduct one on one? Any therapy can only be conducted by a qualified therapists. Did you know that smarter have 11 qualified Therapists in Occupational and Physical. How often does your qualified psychologists comes and what happens when you are faced with problems is it remote control approach?
Smarter have full time 5 days a week and one on one is part and parcel of their therapy program
Please do not take advantage of parents who are already facing hardship with your added costs we are not all rich like yoou who cpould send your chil to ISB and spend $1500 per months. How could people make oney on other people misgortune I could not comprehend. I bet you will not [put tghis in your blog.
You still use Autistic Child that mean you are looking at your child autism first not himself as a person. I on the other hand have a son with autsm you see i have a person a child first who have autism.

Poor parent with a son with autism

Pweshes Mama said...

Dear Lu Ann,

I am genuinely sorry to have seemingly provoked you in such a way.

I am only sharing information on this blog to help lay out other options for parents if they happen to be seeking one. We all know not all autistic children are the same so it is only fair for parents to seek out different types of treatment and see what works for their child.

I have always tried to sound "neutral" because I never think that what I do is right and what others do is wrong. I still firmly believe that it is up to the parent themselves to decide what they want to do with their child. And for them to do be able to do so, it would be better if they had a few choices laid out before them.

If I have failed to seem "neutral" to others in my writing,then I wholly apologise and I will try to be more conscious of it the next time I write about our society.

Thank you very much for your comment and all the best to you and your son.

autismx2 said...

Dear Lu Ann,
Pweshes Mama n myself ARE parents of autists.

I myself have 2 on the SPECTRUM. One on the VERY high end and one in the middle of the spectrum.

I am also a working mother and I have another third child who is 2 yrs old. I only earn less than B$1000/mth.

There is no cure for autism but there are ways to help "recover" the autistic child. And currently, whatever way we try to help our children it will all COST A LOT OF MONEY.

Learning Ladders understand the financial constraints of parents having autistic children because it is set up by PARENTS with AUTISTIC children who is neither RICH or POOR but trying their best to help BOTH Parents & Child(s) affected by AUTISM.

That is why Learning Ladders society provides FINACIAL AID in various forms and even FULL SPONSORSHIP where THEY actually GIVE YOU the money to pay for ALL the specialist visits and whatever individualised type of therapy recommended for your child.

This has helped us tremendously financially. Learning Ladders does not discriminate anyone.

Not all parents with the society are rich.

Since its official start late last year it has already started its FINANCIAL AID scheme and have already started GIVING FULL SPONSORSHIP ie,from getting the formal diagnosis up to carrying out the therapy.

That is why Learning Ladders main emphasis is GETTING THE CORRECT FORMAL DIAGNOSIS from not ONLY a Qualified Psychologist but ALSO VERY EXPERIENCED (ie, more than 10 yrs hands-on experience in diagnosing for AUTISM SPECTRUM DISORDERS).

A FORMAL DIAGNOSIS DEFINES the child's individual problem areas.
When we know what our child's targeted problem area, then we can carry out the EXACT type of therapy required and this saves money in the long run.

As parents of autists, we must also educate ourselves on our child's type of disability and the various scientifically proven type of therapies available.

Do you know what role does an Occupational or Physical Therapists play especially in autism?

My second son has very severe communication skills (NON-VERBAL)and some behavioural problems and also various biomedical problems. But he has a high IQ, very good receptive skills, highly visual learner. He alone requires BEHAVIOURAL THERAPISTS, SPEECH & ARTICULATION THERAPISTS and various Biomedical Supplementation. His GROSS & FINE motor skills are good so he does not require OCCUPATIONAL & PHYSICAL therapy. He has some visual sensory issues but this has been improved with BEHAVIOURAL therapy. A lot of his Biomedical problems have improved greatly through Biomedical Supplementation.
ALL THESE COST $$$$$$.
Based on my+hubby salary, this is just not possible especially since I have another autistic child and another lil' child.

But with the society's help, these are all possible and as a BONUS my son has improved a lot too.

With ALL these therapy, I am not trying to change my son but to help him cope with his surroundings & environment and for our community to be able to accept him.

Now when we go out, people think my boy is just shy!He is now able to tell me what he wants at the supermarket rather than go into a screaming tantrum. We can now even negotiate with him into not buying what he wants and replace it with something else and he does not even cry!

This is also what Pweshes Mama is trying to do with her son.

Whatever type of Therapy you choose is YOUR CHOICE and how you look at your son's disability (or difference) is again YOUR OWN view.

THE MAIN ISSUE HERE IS GOVERNMENT FUNDING & FINANCIAL AID to help us parents pay for these therapies. They have to realise that AUTISM is treatable or "recoverable". ALL OUR CHILDREN CAN IMPROVE.

FINANCIAL AID should actually come from the Government or the relevant Government body but a non-profit organisation is taking this role.

So now do you still think the society is taking advantage of us poor parents?

Pweshes Mama said...

Autismx2,

Thank you very much for your clarification. I hope others will now read your comment along with my earlier one, slowly, clearly and with an open mind, before jumping into such rash and accusatory conclusions. Amin.

Lu Ann,

I hope you have read the information given by autismx2 and have considered the points raised in an objective and rational manner.

I can understand and empathise with you being a mother that has gone through your own challenges in dealing with your own child all this time, AND at the same time having witnessed the heartbreak of other parents with their children,would be highly skeptical of this NEW society coming in and telling others nonchalantly of what they do to treat their children ESPECIALLY since it is at such a high cost. I mean who do we think we are? Siuk sendiri jua! Macam tah orang lain tebayar etc etc

But please, just try to consider, even a teeny weeny bit, that I along with LL are only doing what we do, to HELP other parents and their children.

Yes, I admit some aspects of what we do is expensive. If you are even the slightest bit interested as to why it is expensive, it is because the books, tools and resources that are used for the behavioural therapy are all ordered from "qualified" and prestigious autism resource centres in USA, UK and Australia. Surely, you cannot doubt these countries' "qualifications" in the field of autism. At the very least, I'm sure we can both agree that these countries know a lot more than what Brunei is aware of autism today.

Before you started attacking myself and the society, did you even read up on this type of therapy that we do? If you have taken the time, you will find that behavioural modification therapy, unlike speech therapy and occupational therapy where as you have pointed out can ONLY be conducted by therapists qualified in those fields, behaviour modification therapy (ABA)CAN POSSIBLY be carried out, and in most countries (due to the financial constraints) are mainly carried out or at least supervised by the PARENTS themselves. Parents are either lucky enough to attend a workshop on it to learn about its basic principles OR they can be given a set of recommendations by the child psychologist who made the diagnosis or by an appointed qualified case manager, which the parents can follow. If there is any problem or further query as to what it is to do, the parents can simply contact the psychologist/case manager for follow up or advice.

The "expensive" resources, tools etc that we outsource from overseas can be borrowed for FREE by members to use in their one to one home based therapy with their children. We also have in our collection for members to borrow, highly commended and acclaimed literature on autism for parents to read and get a better understanding of what autism is and the various available therapies that are out there, which hopefully can help them decide on what they think they want to try. That's what I meant by LL being a support group in that we try and educate each other not only from what we have learnt from our readings but also from our own experiences in dealing with our children. InsyaAllah, we hope that this may lead to the possibility of parents to be able to execute the basic principles of the therapy without having to pay 3rd party therapists. Though it cannot be denied that having a qualified behavioural therapist would probably accelerate the progress compared to when done by only a parent. Nevertheless, we should not completely discount the possibility of SOME improvement happening, no matter how slow or how small, if only parents would give it a try.

As you can see, with behavioural therapy, the parents have a DIRECT HAND in improving their own INDIVIDUAL child. We do this daily and constantly, in every interaction we have with our child. Even when there is a part time therapist involved, we the parents help generalise, internalise and master all the skills that have been taught. I think if you take some time to read the posts about Raiyan's progress, I have at times explained and described the ways that I have done this. It is through this method that I am able to clearly see the amazing progress he has made before my very eyes, because I have helped him get there myself.

Therefore, to respond to your query if we are "qualified" or not, following the understanding that we LL parents only treat OUR own children and NO ONE ELSE'S, I would say yes we are. All in all, we as the parents SHOULD be the BIGGEST role player in the improvement of OUR child and also be the MAIN decision maker as to what is suitable for our child and NEVER should we completely rely on somebody else's opinion on what it is we should do.

It is the parents'responsibility to constantly educate themselves on the MANY types of treatment there is out there, whether it is through behavioural therapy, speech therapy, occupational therapy, psychoanalysis theories, play therapy, sensory integration, biomedical intervention dietary intervention, floortime, TEACH etc etc to enable them to make an "informed" decision on what route to take. Clearly, we at LL are only trying to help facilitate this opportunity for parents.

Take the case of autismx2, she discovered that her 2nd boy had to go through behavioural therapy, speech therapy AND biomedical intervention to help him and thank god, has shown such VAST improvement since he started his therapies. He is truly a lucky boy to have a mother who explored the different options she had before her, was constantly searching for answers and continuously researched on any latest developments, instead of just stopping short at one therapy when she may not be necessarily satisfied with the results it was giving.

After having laid out exactly what it is we do, which includes the possibility of parents conducting the one to one, home based therapy THEMSELVES, wouldn't you now agree that it was completely unjustified and unsubstantiated of you to accuse us of trying to make money out of others' misfortunes? If that is remotely true, then that would mean that we parents are paying OURSELVES for treating our own children.

I hope by now you can clearly see that LL is only trying to help give more options, which includes parents taking a more hands on approach with their children through educating themselves from the options they are learning about.

Altogether, I still wish and hope that there be NO MORE animosity amongst any autism parents with regards to what therapy is right or wrong etc. Autism is so complex and involves such a wide spectrum, that it is simply unfair and quite frankly, dangerous for one parent to completely and wholly speak on behalf of another as to what is the appropriate treatment for an individual autistic child. It is even worse when one is to judge another or tell another what to do based on what they do with their child. And this my dear, includes you judging me about the fact that I call my son "autistic" which in your books mean that I don't see my child before the autism or whatever, I dont fully comprehend. My choice in what I think is simply the employment of certain words does NOT warrant you any entitlement or authority to judge me as to how I feel about my child and I would really appreciate it if in the future, nobody repeats such an attack on any other parent with regards to their approach, state of mind and sentiment towards their autistic child/child with autism.

I don't think it is healthy for us to be attacking each other in any case, when the main focus should really be helping our children , in whatever way we can and try to do.

Hope this has helped gain more understanding and less judgment from all.

Regards,
Pweshes Mama

Anonymous said...

I am confused as to all of your members statement and responses of "treatment" Autism is not an illness that need to be cured. You also said that no one therapy fit all then why are you advocating ABA so vehemently? As you said Autism is so complex that mean no one therapy is supperior or inferior from the rest.
You also said in your blog that you have not visited SMARTER yet you mentioned them in your blog and state that SMARTER is only a place where parent send their children like a nursery. Now please be fair and just do not use ignorant as a defence. It is not nice to mentioned other organisation when you do not have the right information about them.
As for you to put down the Ministry of Health down and shame Brunei Government show that you are not s True Bruneian this is what i call biting the hand that feed you.

I am noit attacking you but merely giving my opinion as you have seem to attack anyone who make comments in your blog if you cannot accept criticism then what the Psychologist from Cardiff state is true you are suffering from denial.

Psychologist from ABA are the only qualified one others who do not agree with you is wrong.
Regards

Lu ann Jua

Anonymous said...

Lu Ann

I am a not a working mother, I am not a super mum like you who could do one on one with your child while holding a full time job and as recomended by ABA it must be 40 hours week so how is it possible? I have three other children on top of my son with autism. I am giving him one on one session in the centre as well as carry it out at home with guidance.
My son is now 7 years old, he was diagnose at 2 years plus and he is now atending main stream school in primary classes. I send him to ASD centre after school and in your blog you said smarter only look afer older children and the centre bdo not do any early intervention program.
Please check you facts correctly, the centre not only provide early intervention, but have Independent Living Skills programs which is preparing him to be active contributing member of society.
So my concern and disappointment is for you to state in your blog for the world to see that Smarter do not provide early intervention program.
As I have said from my first posting in your blog please be tactful when you mentioned other organisation in your blog and get your facts right and the way you are writing seems to indicate you are superior then other organisation and other people.
If you say you are not a rival but as an alternative, why does it sound more of a hype up marketing strategy.

Poor mother

Anonymous said...

this is what i call unfair only to publish what is acceptable to you. since you allwo people to view your life you must be matured enough to accept other people's opinion. Be fair and publish all comments and not been selective.

Lu Ann

Tiwin said...

Eh chill lah, she has been in Chile and hasn't been able to access her blog. She only just got back, and as you can see.. your comments have been published for everyone to see.

I think you are the one who has been very untactful in the comments that you have left. From the very first comment you left, you attacked Riana by saying that LL take advantage of parents, by judging that because she calls Raiyan autistic, she doesn't see her "child first" and by assuming that she was so self-righteous in her own beliefs that she wouldnt publish your comment. And now you attack her some more by saying "You are not a true Bruneian..."???

Who do you think you are to be making that kind of statement? Just because she has highlighted certain areas where the Ministry of Health could use some extra focus, DOES NOT mean that she is biting the hand that feeds her. It is a shame that you are SO defensive, that you had to perceive it that way.

Perhaps you should consider that it is a GOOD idea for her NOT to publish your comments so that she can save you from further embarassing yourself.

PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

Amin.
 
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