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LIVE Chat with Dr. Ricki Robinson Transcript

September 27, 2011 2 comments

On Monday September 26 Dr. Ricki Robinson, author of  Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.

Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.

2:34
Hi everyone! We’ll be live with Dr Ricki Robinson in just under 30 minutes, at 3PM EST. In the meantime, feel free to submit questions!
2:42
Type any questions in the box below and hit ‘send’. Don’t worry if you can’t see your question, it goes straight to us!
2:42
We’ll be live with Dr Ricki in 20 minutes!
2:52
Today Dr Robinson will be …..taking questions about Having a child with ASD the impact on your immediate family and extended family.
2:59
Hi Everyone, we’re here with Dr Ricki Robinson. We’re thrilled to have her back after the last live chat she did with us!
3:00
Dr Robinson: I am so pleased to be with you again. My first chat was an exciting, intense hour! I’m a pediatrician and I’ve devoted my practice to the care of children and families affected by autism for the past 20 years.
3:01
Dr Robinson: I have recently published Autism Solutions: How to Create a Healthy and Meaningful life for your child, in which I share with families what I’ve learned over the years that has helped their children move up the developmental ladder, and problem solve the challenges they meet along the way
3:02
Dr Ricki: A portion of the proceeds of the book of course gets donated to our host, Autism Speaks!
3:02
www.DrRickiRobinson.com for more info!
3:03
So without further ado…. first question!
3:03
Comment From Loni Alpino

Is there any monetary aid for an Autistic child for feedback and therapy services?
3:04
Hi Loni!
3:04
You ask a question that plagues every parent and family who has a child with autism.
3:05
There are so many stressers that families face, and financial issues are one of the primary ones that we see in families of children with special needs.
3:05
There are potential sources of aid…. many of them depend on the state in which you’re living.
3:07
Many of the services in some of the states are provided for through state agencies. As an example, I come from California, and children who have been diagnosed with ASD qualify for services through both the educational system and the California department of Developmental Disabilities. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance.
3:08
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems or special dietary needs.
3:09
additionally approximately 25 states have now passed state insurance reform for autism service coverage to provide many of the services that occur in home for your child.
3:10
Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:11
For more information about the state supported autism insurance laws in your state, i suggest you go to www.autismvotes.org
3:11
Comment From Guest

My daughter is 2 years old and was diagnosed autistic on April 1st. I have some family members that keep insisting she’s just delayed. They don’t understand it’s more than her not talking yet. She doesn’t respond to her name, doesn’t point to let us know what she wants and really has never babbled. She makes noises, but not what I would call babbling. Any suggestions.
3:12
Your situation is very common in families where a child has been diagnosed with special needs, most especially autism.
3:13
There are so many emotional processes that are occurring for the family as a unit, and for each of you individually after getting this diagnosis.
3:14
Of course there is the initial shock that can send you spiraling into a true grieving process, and each of you in the family will work through this in your own time frame. Part of that process includes a stage of denial as particularly i see this in family members who aren’t living with your child day to day.
3:15
It will take them often longer to come to terms with the diagnosis and along with everything else we have to be patient for these things to happen. I particularly see this in grandparents, whose often have forgotten what it was like in the early years with their children, and the bumps that happen along the way.
3:16
To that end Autism Speaks has published ‘A Grandparent’s Guide To Autism’, that was developed specifically to help grandparents understand and deal with the emotions related to a diagnosis.
3:18
I find that when other family members get some understanding of what autism is, and they can get beyond the autism label to understand what are the strengths and challenges of the child who has autism, and learn about ways in which they can learn to relate and then help their family, that this will put the family members back on track to becoming a support that you might be able to rely on.
3:22
There are also professionals who understand this process who can provide help for those who are really struggling, and sometimes that is necessary. Finding a caring pediatrician with whom you are able to share these issues may provide you the support you need to be able to take the help back to your family members. In my experience having such a case manager for the long term allows you to not only meet both the medical needs of your child and your family, but also your emotional needs.
3:22
Comment From Maureen Early

What is the best way to educate your extended family about autism, especially when it looks like a child is tantruming because they’re “naughty” instead of due to their symptoms of autism.
3:22
Hi Maureen!
3:23
I am so glad that you asked that question, because it is one of my pet peeves.
3:23
So often children, all the way up to adults with autism, are described by their behavior, as you noted.
3:23
and yet…. this behavior often comes the greatest clue that we have to what a child is thinking or feeling.
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and why do I say that? When a child is not able to communicate, and yet has intent, what would we expect them to do?
3:24
Of course they’re going to do something to express themselves.
3:25
So our job is to become a detective, and to try to figure out what they’re trying to tell us. So often these behaviors don’t have intent, but are actually a response to the environment. We know that children with autism have unusual responses to the world around them.
3:26
Additionally one of the senses that we have is how we interpret our own bodies. It’s how we know that we’re hungry or that we have a pain, and where that pain is going to. My hypothesis is that it is just as difficult for children with autism to understand this sense as it is for them to understand the world around them.
3:27
Therefore quite often a change in behavior is related to how your child is feeling at that time. If a behavior is persistent and is effecting his quality of life, then it is my experience that a medical illness must be ruled out. I have covered this issue extensively in my book, for those of you who might be concerned that your child may be experiencing a medical problem.
3:28
However it is important that we “demystify” a child’s behavior for your family members. If you can ask your therapy team to help you with language that is understandable to describe these behaviors to your family members so that they can also begin to understand what your child might be expressing. This can be incredibly helpful.
3:29
Comment From Relonda Supel

What therapies and doctors should a child with autism have in place beside the therapy he gets in school and seeing your usually pediatricians
3:29
Hi Relonda!
3:29
Putting your team together is one of the paramount issues for parents and families.
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Depending on your community, there will be a variety of resources that you can tap into.
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If you happen to be in a community where there are few resources, then Autism Speaks has provided a resource guide to help you identify local resources.
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Here’s a link to that guide:http://www.autismspeaks.org/community/fsdb/search.php
3:31
Depending on the resources available, you still need the manager of your team. In general it becomes one of the parents.
3:32
Sometimes you are able to find a professional on your team who has experience in case management. Pediatricians and other physicians sometimes do have this expertise, and you will want to find out about that.
3:33
Deciding on who your team members will be really comes from understanding your individual child. Nowhere in medicine have I experienced a complex disorder requiring so much individualization of a treatment plan.
3:33
When you determine through your professional consultations what your child’s challenges are, then my approach is that every challenge deserves the proper treatment.
3:35
This means that your treatment team will look like a wheel, with the child, parents and family at the center of the wheel, but the therapists as the spokes of the wheel, and the tire of the wheel are all the challenges and barriers that your child faces. What we know is that these challenges will change over time, especially as your child goes into adolescence and into adulthood, and so this therapeutic team will change accordingly.
3:37
That’s a long way of saying that I can’t tell you how many doctors you will need, and you will be the advocate for that, depending on the challenges that arise. Finding team members where you can have an ongoing dialog where they will listen to your concerns is key to finding the right professionals at the right time. And you, as the parent, are the keeper of that key.
3:37
Comment From Lou Melgarejo

My wife and I fear that when our kids are older, our two neuro-typical kids will resent their autistic sister for the restraints that her condition has put on our lives. Do you have any suggestions for raising siblings without resent?
3:38
Hi Lou! You too ask a question that is on the mind of most parents who have more than one child.
3:38
If truth be told, it’s on the mind of all parents, as typical siblings, as they grow up, often become resentful of their siblings, and their perception of their place in the family.
3:39
For siblings of children with autism, these feelings may come sooner, and are more real.
3:39
because off the 24/7 nature of living and helping a child with autism.
3:40
Although I can’t guarantee that you can’t raise siblings without resentment in any family, there are things we can do. I think they first thing you have to do is to help your siblings understand what is happening for their brother or sister.
3:41
We must always inform siblings as directly as possible using age appropriate language, and be certain to not let our fears and worries be evident, as they are able to pick up on these aswell. I like to describe to them, not in the terms of the autism label, but we have to tell them what that really means for their sibling.
3:43
I find that older siblings, who so much crave to have an interaction with their brother or sister, but don’t know how, can be mentored by giving simple techniques and instructions as to how they might be able to engage their sibling in a meaningful way that will be fun for both of them. I find also that having a sibling with autism is a double edged sword: resentment goes hand in hand with guilt.
3:45
Siblings may feel guilty because they do not have autism, and yet may resent the time that you might have to spend with their brother or sister. These issues are best dealt with if brought to the front and center in a way that will help these children deal with their own emotional journey.
3:47
Studies have shown that siblings who have brothers or sisters with ASD often learn to cope quite well. For many learning to be a helpful member of the family becomes second nature. In fact as an adult a sibling one of the helping careers and may become more skilled than their peers in responding positively to their own emotional needs.
3:48
if you happen to have a child who’s having a difficult time, especially as an adolescent you may also need to consider getting them the support they need to work through these emotional issues.
3:48
Comment From Bobbie Jo

sometimes my son seems as if he is bi polar. I expressed my concern and I am told that it is normal for a child that has autisim?
3:49
Actually Bobbie Jo, what you’re describing, which I presume is mood changes, both highs and lows in your son, can occur in autism, but is not necessarily part of autism.
3:51
Often these mood concerns can interfere with your child’s daily life and absolutely derail learning and interactions. if this is the case, then we do have ways of addressing these issues medically. Certainly your son deserves a full medical evaluation. In this case I would suggest asking your primary care physician first, to refer you to a specialist, which might be a child psychiatric or neurologist, or developmental pediatrician who has expertise in this area.
3:53
Mood issues in autism is considered a co-morbid condition that are overlapping the symptoms of the autism. this is not always easy to sort out, and is why you need a physician with expertise to help you determine what is happening for your child, and the correct treatment approach. Again, if you’re having trouble finding a professional in your community who can help you, please check out the Autism Speaks resources guide:http://www.autismspeaks.org/community/fsdb/search.php
3:54
Comment From Joseph

Do you put any emphasis into the new belief that Autistic kids should now also have included in their therapies joint attention therapy?
3:55
I am so glad you asked that question Joseph.
3:57
For children with autism, who at their core have a delay in social and emotional development, it behooves us as part of their treatment program an approach that helps them gain mastery of social interactions. In order to do that one has to go back to the basics, and help a child develop his ability to attend to another in a meaningful way, in order to engage and interact.
3:57
Recent research has confirmed that children who developed joint attention have greater gains in language than those who have not.
3:59
This underscores the hypothesis that strong foundational social and emotional development is really required for a child to be able to think and create. This at the end of the day is what we hope for all children with ASD. So how are you going to do this? There are many techniques that can supplement what your program is, or can be the primary focus of your program, that will support your child developing joint attention and engagement and reciprocity in play.
4:00
I use the DIR/Floortime approach in order to foster these abilities. I have described them fully in “Autism Solutions, and describe how to implement Floortime in the home throughout the day.
4:03
Other approaches that can help include the Early Start Denver Model. Practitioners of these approaches are increasing around the world. Floortime was designed for parents to learn how to interact with their children by understanding how their child learns about the world, what they’re individual differences are that derails this interaction, and then entering their world with this understanding by following their child’s interests.
4:03
If you wish to pursue this, Autism Speaks has a reference library for books on these subjects.
4:04
Remember, shared emotion with others and relationships that are developed are the glue that supports all that your child does.
4:07
I want to leave you with a final message today: I’m sorry I couldn’t get to all your questions, but I hope to be back in the future for more. Just remember: believe in your strength, creativity and love. Your family will help you meet the challenges of raising a child with autism, so you can help your child be the best that he or she can be!
4:08
Autism Speaks: Thanks everyone for coming, and thanks Dr Ricki for another great chat. Sorry we didn’t get to everyone’s questions.
4:08
You can forward any questions to familyservices@autismspeaks.org, or call our autism response team 888 288 4762
4:10
If you’re interested in Dr Ricki’s book, Autism Solutions, check out her site here: http://www.drrickirobinson.com/
4:11
Thanks everyone!
Categories: Family Services Tags: , , , , , , ,

Autism Speaks Co-Founder, Suzanne Wright to Host LIVE Facebook Chat

September 20, 2011 8 comments

Join us on September 21, 2011 at 1pm EDT for a LIVE Chat with Autism Speaks’ Co-Founder, Suzanne Wright! You can read a special letter written by Autism Speaks Co-founders Suzanne and Bob Wright, grandparents of a child with autism, here. 

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

Categories: Co-founders Tags: , , , , , , , ,
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