Autismvoice

What NOT to do when your child is newly diagnosed.....

sandrasinclair — Sun, 18 May 2008 09:14:22 -0400

I love this article from Lisa Jo Rudy about what NOT to do after your child is diagnosed with an autism spectrum disorder.

You know, I remember the panic and sadness that I felt when I first found out about my son's diagnosis, and all of the "mad rush" things that I did to get knowledgeable and to try to make good decisions for him. To some extent, that's necessary, but remember when you go into this, that many people in the world of educating autism have only had training in one intervention, and really don't know much else outside of their intervention, although they believe their intervention is the best. Keep that in mind when looking around.

When talking to other parents and teachers who have learned more than one intervention, you will find that almost invariably those who have more than one intervention under their belt will have a broader world view of autism interventions and will understand the benefits of using more than one over time.

My experience has been that every intervention we have tried has helped our son, each in a different way. All have been effective for what they can do, and no one intervention covers all the bases. A customized approach is usually what's called for, despite what a lot of professionals trained in one method might say.

The research available on all autism interventions is really not that well-done as yet. Some interventions say that they're research-based, but if you really look into their research, you will find that in the end, it's very difficult to do a good study.

For instance, the children in Dr Lovaas' group (only 19) were cherry picked for verbal ability by age 3 and normal IQ scores. Nonverbal or children who didn't score well on IQ didn't get in. Most people don't know that.

And even then, only 40% went on to regular school.

Don't get me wrong- ABA is a very good, very solid intervention for teaching tasks, imitation, and initial focus. The key to a good experience with ABA (or any intervention) is the TEACHER, and to know when to stop using it. ABA is best done with a younger child who has no skills whatsoever. The mistake many make is to do it harshly, or to keep doing it long after it's lost its effectiveness.

We did ABA on our son in the beginning, had a fabulous, very fun teacher, and my son learned a lot. She broke a lot of rules, but you almost have to with ABA in order to get a good result with ABA. Verbal Behavior is a newer, more fun form of ABA that a family should consider if they are thinking about ABA.

But ABA and Verbal Behavior are poor when it comes to teaching flexible thinking, social abilities and conversational skills- the skills that your child is severely lacking in and can't be learned in a rote fashion. For social abilities and communication, RDI, Son-rise and Floortime are far better interventions.

And no one beats a good speech therapist for teaching communication skills to your child.

And for healing your heart spirit and your family's heart spirit, nothing beats son-rise.

Regarding sensory difficulties, either having a good occupational therapist, or reading up and implementing how to help with this in your home, such as "The Out of Sync Child Has Fun" or "Just One Bite" for food textural and taste issues are great ways to help your child as well.

For your child, you may need stuff from some or all of the above, some done at the same time, and some in sequence.

I also love her idea about "window of opportunity", the big urban myth. Someone introduced this idea and everyone latched on. Remember, "window of opportunity" an opinion. If your brain couldn't continue to develop, no one would ever recover from a stroke or brain injury. No one could learn anything new after age 5. Please! All of us have learned tremendous things long into adulthood. Your child will too.

And regarding the "rush to cure"-- remember that most children recover partially, not totally from their autism, so even though you don't know your child's potential, the most important thing is to value him or her now, as he is, and not what you wish he was. He will feel whether you truly accept him or not as he is now. Remember, he or she is a person, a child, first, who just happens to have autism, not the other way around.

Sandra Sinclair, www.autismvoice.com

A real challenge

sandrasinclair — Wed, 26 Mar 2008 00:14:09 -0400

Do you ever wonder why we as parents worry about our children so? It's because we don't know what the future holds. We don't have any crystal balls lying around so often, we can get caught up in the concerns for the future. How many times have your thoughts rushed ahead to 5, 10, 20 or more years from now, wondering how your child is going to do into adulthood? Here's the rub- you don't know, and you have little to no control. So our challenge as parents is to try to prepare our children as best we can now, and live in the present, not the future. It's a challenge, no? But I firmly believe it can be done, with a little mental discipline.

Just see if you can take a moment and really take your child in in all his / her beauty and individuality, right now. Don't get caught up in what you need to change, what needs improvement, or how you can fix him. Just appreciate him for who he is, right now. Practice this for a few moments every day. Give yourself this gift- of learning to be present and appreciative. This is something I'm starting to do each day- to set aside concerns, even for a few moments, and appreciate my child. It helps. Gratitude is a great healer and soother for the soul.

Holiday tips for families living with autism

sandrasinclair — Mon, 17 Dec 2007 11:03:57 -0500

Here's a great article about things you can do to help prepare your family for the holidays. There's some great tips in this article:

http://www.autism-society.org/site/PageServer?pagename=holiday_tips

Oprah on Autism

sandrasinclair — Fri, 06 Apr 2007 12:13:14 -0400

Well, it finally happened. Oprah did her first show on autism yesterday, and it was truly a great experience to watch it.

I really think she did the subjects of family issues and public awareness great justice, and tried to present autism from a family's point of view, instead of a clincian's-- a refreshing change. I'm grateful for what she did, and am so glad that they featured the parents from the Autism Speaks video. It was a touching, inspiring, and informative piece for all of us.

The Autism Speaks video is here:

http://www.autismspeaks.org/sponsoredevents/autism_every_day.php

It's a great piece about how autism can and does affect many families, but I caution you that if you are really upset about your child's autism, that it's not filled with a lot of hope, and you may not want to watch it. I think that the mothers in the piece were understandably truly grieving about their child, and had never considered a different, more optimistic and positive view about their child's autism. We all can do that, and I only wish that a positive outlook was more evident in the press.

Oprah mostly featured families of children that were normally developing and then lost skills, which is less common than children that never gain the social and communication skills to begin with.

That might cause the public to think that most children with autism start out normally and lose skills, which is not the typical autism scenario. Also, not enough time was spent on the warning signs of autism in early development, because they were featuring mostly those who had lost skills at 18-24 months.

Overall however, I was very moved and think she did a great service for the autism community at large, by creating some wonderful public awareness about autism and how it manifests in daily life. I have a lot of respect for what Oprah does, and this show is no exception.

Son-Rise New Frontiers Program

sandrasinclair — Mon, 27 Nov 2006 15:08:20 -0500

I highly recommend the Son-Rise program for autism. Son-Rise, like RDI, is very empowering for parents, because as a parent you realize how very important you are and how much influence you really have on your child's progress.

Most children with autism respond well to Son-Rise, because the program establishes trust quickly with the child and as a result, they are usually more willing to interact with you more and accept more because of that level of trust and interaction. I also love how there are no limits or expectations put on how far your child can go with this program. There is a healing that happens in your heart and mind for your child and for your family regarding what autism means to you through Son-Rise, and I'm very grateful for their approach.

Shortly before Thanksgiving, John and I were fortunate enough to attend the Son-Rise New Frontiers Program in Sheffield Massachussetts.

Son-Rise, like RDI, focuses on the interpersonal, communication and flexibility goals first, then uses those skills to build other friendship and conversational skills, and focuses lastly on academics, reasoning, self-help, and motor skills.

New Frontiers is an advanced training program that builds on the foundation of the Son-Rise Start-Up. In New Frontiers, we learned specifics on how to establish program goals, and the techniques on how to achieve them, as well as looking at our own beliefs about what's possible.

We learned how to use both our child's activities and our activities to achieve our goals - to build length of interactional attention, to increase flexibility, to build language and communication skills, and ultimately to build friendship and conversational skills.

This is not done in a static way, but rather in a more flexible way, through interactive play and later on adding role plays, always adding to what we're doing and what we've done before. We learned how to keep growing and expanding our goals and activities to make them gradually more and more complex and changeable over time so that a child can learn how to deal with the world effectively within our program first.

We also learned how to be students of ourselves- regarding our feelings, attitudes and beliefs about our child, ourselves, our program, and how our child exists in our world. This is the only program out there that deals with the head and heart of the parent, and the people working with your child. You learn how to learn from yourself and from your child, how to examine and question your beliefs about what's possible and what's important, and how to ultimately be in a good place with all of this, while always trying for more.

The foundational idea of Son-Rise is total acceptance of the child as he is, while always extending kind invitations for more growth. Son-Rise goes with the child instead of against the child, so the child feels some control and trust in working and playing with you, and that helps the child to feel safe about gradually allowing new things in. Consequently, there are very few "no's" at the beginning. Once the child has mastered basic flexibility, social, and communication skills, that's when more "no's" start to come in.

In my experience, when a child is learning the basic stuff about how to be flexible, how to trust another, how to communicate and how to interpret and respond to the world around them, that you can use Relationship Development Intervention (RDI) or Son-Rise. However, just speaking from my own experience, Son-Rise is probably the easiest and quickest way to get through those really tough early stages with the least amount of resistance from your child.

I'm so glad that we looked into Son-Rise. It's a highly practical and healing way to remediate a child's autism.

Sandra Sinclair, www.autismvoice.com

Parenting Autism- Getting Past the Embarrassment

sandrasinclair — Sat, 11 Nov 2006 06:00:00 -0500

One of the more difficult parts of parenting a child with autism,
and something that can be hard to talk about, is the embarrassment you may feel about your child's behavior. As parents, we're not supposed to feel embarrassed about our children, yet we're also taught that children should behave, and if they don't, it's probably a result of faulty parenting.

This belief system can be very disempowering, especially for a
parent of a child with autism, because it's impossible to control
everything your child does. At those times when your child is
acting strangely or falling apart, you can feel embarrassed or
angry about the judgment you may feel from others. As a result, you may feel pressure to do something against your instincts, such as punish your child, just to save face, to look like you're in
control, or to assuage your anger.

In reality, just like the sadness issue, how you feel about others'
opinions is completely up to you. Believe it or not, you can choose
to feel however you like when your child throws a tantrum in the
mall. You don't have to feel unhappy just because your child is
unhappy, or because others may judge you or your child. It's
possible to empathize with your child in the situation while
remaining happy and calm, or at least neutral and calm.

Next time you're in such a situation, ask yourself this question-

"Which attitude would best serve me, my child, and this situation?
Happy and calm, or embarrassed and angry?" My guess is that happy and calm would be the better choice in most situations, but
ultimately your mindset is up to you. You cannot be influenced by
others' opinions, your child's feelings, or anything else, unless
you decide that you can.

Now let's turn for a moment to the person who is judging your
child. This is someone who is judging a child with special needs.
What exactly does that say about them? In reality, their judgment doesn't define you or your child at all. Instead, their judgment
defines them as someone who needs to judge. It has nothing to do with you or your child.

If your child could do better right now, he would. In time he will
do better, no matter what's happening at this moment. If you choose happiness instead of embarrassment, you can best support your child when he needs you most, even while he's falling apart at the mall.

Sandra Sinclair

www.autismvoice.com

Parenting Autism- Getting Past the Sadness

sandrasinclair — Fri, 03 Nov 2006 06:18:08 -0500

I remember feeling quite sad for a long time about my son's autism, and at times that feeling still overtakes me, but now things are different, because I understand that what the rest of the world has decided is a tragedy is not necessarily one. I have chosen not to follow what everyone else thinks I should feel. Instead, I choose to feel happy most of the time, because I don't think my child is a tragedy at all, and I wrote two articles about this - one caled Getting Past the Sadness, and one called Getting Past the Embarrasment. Both are about our acceptance or not of other people's views and attitudes.

- Sandra Sinclair

Parenting Autism- Getting Past the Sadness

It's very common for a parent of an autistic child to sometimes feel quite sad about his or her child's autism. After all, every parent wants his or her child to be accepted, to live a happy life, and to make all of their dreams a reality. In fact, you may have experienced an overwhelming feeling of sadness upon hearing of your child's autism, as our society has long held the idea that your child's condition is tragic and incurable.

But I invite you to look at things in a different way. Perhaps you can look at your child as not tragic or incurable, but rather, as unique and remarkable.

In our society, people who are different are often seen as unfortunate, sad cases. But if you think about it, your child is probably a pretty amazing person. His autism is actually a part of who he is, and he's probably not sad about it at all, unless society has convinced him otherwise.

Imagine if our society held autism up as an incredibly marvelous thing. In that case, most of us would be pretty happy about our child's autism, right? Our child would still be autistic, but our perception of what that means would be different, and so would our resulting emotional response.

In either case, society is telling us how we should feel- happy or unhappy. But in reality, no one else can dictate your feelings, unless you allow it. You truly decide how you feel from moment to moment. You decide if you're going to buy someone else's idea about how you should feel. And yes, you can decide to be happy or unhappy, despite what everyone has told you. You can decide to be happy now, without waiting till your child is recovered. I'm not talking about denial, where you're pushing down feelings and pretending they're not there. I'm actually talking about making the decision to be truly happy.

That doesn't mean that you give up on hoping and trying for more. If you can hope and work for your child's best outcome without making your happiness dependent upon it, and if you fully accept your child as he is now, even with his autism, then your child will feel that acceptance and positive expectation, and will respond by believing in himself.

No matter how many gloom and doom predictions others make about your child, you ultimately decide what you believe. Making the decision to fully accept your child and to be happy now, while trying for the best possible outcome will give your child what he needs- lots of learning opportunities in an accepting and loving environment.

Sandra Sinclair
www.autismvoice.com

A letter to explain your child's autism to other children

sandrasinclair — Thu, 12 Oct 2006 18:23:11 -0400

Here's a terrific letter that you can print out or read to your
child's classmates, friends, or any other children that your child knows to explain autism to them.

It's written on a primary school level, so for preschoolers
and kindergarteners you may need to do a little paraphrasing, but it's great for explaining what autism is. It's good for adults as well.

If you don't want to use the word autism as yet when talking with other children, you may want to say "children like (your child's name)", instead of using the label. Sometimes young children only need a basic explanation.

One thing you may want to add to this letter:

You can say that even though your child may not look at them or talk to them, he does want to play. Even though he doesn't show it, to just talk to him gently and play with him anyway.

To see the letter, go to:

http://autism-ascc.org/kids.htm

Sandra Sinclair www.autismvoice.com

Parenting Autism - Being Your Child's Best Resource

sandrasinclair — Fri, 08 Sep 2006 14:48:18 -0400

Don’t be Afraid of the Myths and Misconceptions about Autism.

Parents often feel sad, afraid and confused when they learn their child has an autism spectrum disorder, and It’s no wonder -- autism is often portrayed as a grim, lifelong disability, from which there is no hope of recovery.

Of course, these expectations are based on outdated information about people who grew up a generation ago, when only the most severe cases were diagnosed, and treatment was practically nonexistent. Unfortunately, parents are still given this outdated information, presented as if it’s still accurate and relevant in our present day.

These misconceptions lead to more fear, more sadness, limited expectations, and feelings of incompetence in parents about how to best help their child. As a result, some parents rely entirely on other people to work with their child and to make decisions for their child, instead of trusting their own instincts, knowledge, and abilities. Parents are their child’s best resource, yet somehow that’s not the message they’re getting from the experts.

Don’t be Afraid to Believe in Your Child’s Potential.

Each child has their own unique, unknown potential. Everyone who works with your child must believe in his ability to learn, grow, and have a bright future.

With effective intervention, the vast majority of children experience improvement, ranging all the way from slight recovery to complete recovery, and everything in-between. The degree of recovery a child experiences depends primarily on his unique potential, combined with whatever learning opportunities he experiences.

Learning opportunities are not just teaching style and content alone. A child's overall environment and expectations are also an integral part of his learning experience.

Knowing these things, we can do three very powerful things for our child:

1. We can love our child as he is now, and provide a positive, nurturing environment.

2. We can keep a completely open mind as to how far our child can go.

3.We can present lots of positive opportunities for learning and growth.

If we do these things, our child will have the opportunity to truly fulfill his unique potential.

Don’t Be Afraid to Ask Questions.

If your child has been diagnosed with an autism spectrum disorder, it’s important to ask questions. Ask as many as you need in order to feel confident in your understanding of the disorder. Even if you get most of your initial questions answered, you may find there are still many questions that no one can answer conclusively, because in many ways autism research is still in its infancy. Researchers are still gathering information regarding cause, prognosis, and what interventions are most effective.

Don’t Be Afraid to Explore Your Options.

Get to know all your options. It takes some time, but continue to seek opinions and advice from people with different backgrounds in autism. Even after your initial questions have been answered, it’s still a good idea to consult with additional people with different types of knowledge and expertise.

For instance, you may want to ask a few different doctors, psychologists, teachers, therapists, and parents with contrasting approaches to autism about their opinions and experience. Our understanding of autism is continually evolving, and one person may have knowledge that another does not.

As you gather more and more relevant information, you will make better and better decisions for your child. Remember, no decision is carved in stone. In fact, you’ll probably change direction and switch approaches a few times, and that’s okay. It’s all part of the process of learning what works best for your child, and adapting to your child’s changing needs.

Don’t Be Afraid to Work with Your Child.

Never believe that the experts have all the answers and that you should not get involved with your child’s treatment program. Talk with the experts to learn more about what you can do at home with your child. Do further research by reading books and articles on autism, attending classes and conferences, and talking to other parents.

You know your child better than anyone else. In addition, you have an undeniable bond with your child that no one else could ever possibly have. Take advantage of your bond to teach your child, build his self-esteem, and explore treatment options you feel will work for your child.

Regardless of their potential, children will seldom go beyond the expectations of their parents. We can't know how far our children can go, but we can take the lid off the box of low expectations, by having faith in their ability to learn, and by providing the loving environment necessary for them to achieve their highest potential.

Sandra Sinclair, www.autismvoice.com

The Son-Rise Start-Up Program

sandrasinclair — Thu, 20 Jul 2006 23:19:46 -0400

As some of you know, I'm currently attending the start-up Son-Rise program in NYC. All I can say is that the appoach is incedibly life-affirming, empowering, and effective for autistic children and their families.

What I'm seeing during this week is that each morning parents are coming back happier, with reports of surprising progress in terms of eye contact, connection with their child, and feelings of empowerment and enjoyment of their children. Of course it differs for each child, but many parents are surprised at these quick changes their children are making literally overnight, with just a few simple changes. Just speaking for myself, I saw an increased intensity of eye contact and connection with my son, and an increased desire to seek me out just after doing the changes for about a half hour. It gets you close to you child faster than anything else I've experienced.

Son-Rise has some similarities here and there to some other interventions I've experienced, but it differs in a few aspects -- the child is seen as a gift and not someone that needs to be fixed, yet opportunities are constantly given for growth. Expecations of the potential for each child are extremely high, compared to what we've all been told, regardless of age or diagnosis. There is an incredible acceptance and respect for the whole child and the entire family. Also, nothing is forced on the child, and apparently this level of respect and acceptance gets initial results very quickly for many children.

The intervention philosophy and style may be strange for some, because it all starts by accepting the child totally, including their autism, and joining the child fully by participating in their "stimming" behaviors without trying to stop them or redirect them. This is not done to manipulate, but rather, to fully appreciate, enjoy, and engage with your child by accepting them as they are. Then as opportunities present, the child is gently challenged more and more to expand their awareness, flexibility, frienship skills, communication, and knowledge. Everything at the beginning is based on trusting your child to lead and teach you, and then as time goes on, the parent takes more and more of the lead in the interaction.

I can see this intervention used throughout a child's program, and I think that you can creatively use it in conjunction with some other interventions as well, such as RDI and speech, etc. With RDI, I can see it as really helping to smooth out the transition in some of the early stages. And I can also see it as a much more organically easy way to do a program such as RDI, by being able to let go and allow some of those goals to happen more naturally.

I don't think that this program conflicts with behavioral philosophy, but it does conflict with most present-day behavioral programs. What I mean is that I can see Son-Rise definitely uses some basic behavioral principles in some of what they do, but the difference is in what they're trying to accomplish -- (creating a happy independent adult with relationships, self-acceptance and self-esteem), the accepting attitude behind it, and the emphasis on social and communication outcomes that are truly important long-term, rather than on short-term fixes or compliance issues.

The family and child's self-esteem and happiness is put first in this intervention. It's a healing balm for the spirit of a family that's been challenged by autism. I highly recommend it, and hope that all families with an autistic child or adult might have an opportunity to experience the Son-Rise program for themselves one day.

http://www.autismtreatmentcenter.org/

-- Sandra Sinclair, www.autismvoice.com