Home > Awareness, Family Services > Autism Speaks Live Chat with Rodney Peete

Autism Speaks Live Chat with Rodney Peete

6:54
Hi, I’m Rodney Peete, Co-Founder of The HollyRod Foundation. I am so excited to be here to chat with you and I share our story. I hope that I can help you along your journey
6:55
Comment From Rae

how did your son’s inital diagnosis effect your relationship with your son?

6:55
Hi Rae!
6:56
My son’s initial diagnosis really started to drive a wedge between us because I didn’t know what autism was
6:56
As he started to withdraw and become more non-verbal I didn’t know how to interact with him. Mostly it was because I did not know about autism so I needed to educate myself
6:56
I was heavily in denial about his condition and diagnosis
6:57
I probably, like many fathers, thought I could fix him.
6:57
I used my own methods of connecting with him and they never worked
6:58
Comment From Phyllis

Any advice for me I have a 17ry old son with autism and am going thru a divorce, he blames me for everything?? Makes me sad.

6:58
Hi Phyllis I know this must be a difficult time for you
6:58
Due to my denial, my wife gave me an ultimatum. I got on board or out of the house
6:58
I had to choose between my family and my own ego
6:59
Once I chose correctly we were able to move forward as a family
6:59
The most important thing, in going through this divorce is your 17-year-old son
6:59
Comment From HEIDI

RODNEY- ALTHOUGH WE’VE COME ALONG WAY , IM STILL SO SCARED FOR MY 18 YR OLD SON- WHO IS ON A 4TH GRADE LEVEL- I THINK MORE SO, AFTER HEARING WHAT HAPPENED TO JOHN TRAVOLOTA’S SON- TO HAV FEARS???

7:00
Hi Heidi
7:00
Our son is 13 now and we are thinking about his adulthood and it is a scary time
7:01
We need to do a better job as a society working with children who become adults with autism, whether is be jobs, education, housing, integrating into mainstream society.
7:01
These all need to be dealt with
7:01
No matter what age, you must continue to be an advocate for your son
7:01
Comment From Adam

Hello Rodney. Go Trojans!!!

7:01
Fight On Adam!
7:03
Comment From Tom

How old was your son when he was diagnosed

7:04
hi tom Rj was diagnosed at age 3
7:05
Comment From Robert

Rodney , Having a son with Autism also i have learned to love all the little things the way he says hi daddy or “Tickle Me” love the book and keep spreading the word

7:05
Yes Robert, it is about small wins
7:05
I can remember the first time my son said, ‘I want some french fries’ from the backseat. I thought it was the same as us winning the championship game!
7:06
Comment From Erin

How do you make sure you have a great relationship with your other children? I find it difficult to make sure there is enough time for everyone and am always afraid someone will feel left out!

7:06
Eric, yes it is very difficult
7:06
RJ has two brothers and a sister
7:07
What we have done is make sure we have educated his brothers and sister about autism, about his abilities so they become advocates for him. They are part of his therapy. Everything they do in interacting with him has helped us engage everyone in this fight
7:08
We are getting so many questions which is so exciting!
7:08
We are trying our best to answer them all – keep them coming!
7:08
Comment From Greta

Can I just get off topic for a second and tell you how excited I am to see you here! My son, Austin, is 5 and was just diagnosed – he’s very high functioning, and I’m very grateful for that. But I am a huge Dallas Cowboys fan (born in Dallas) but I grew up in Mesa. We’re the same age. :) Anyway, I just bought your Kindle version of your book for my husband. I am looking forward to reading it after he’s finished. Thanks for everything you and your family do.

7:09
Thank you Greta- we are all in it together!
7:09
Comment From Ric

Was it hard to play football and to raise your child?

7:09
YES Rick – Thanks God I had a rock for a wife
7:10
She rolls up her sleeves at every stage- talked to every doctor, really jumped in with both feet, while I was away playing football!
7:10
I like most dads wanted my son to follow in my footsteps
7:11
I saw my teammates bring their kids in the locker room. When I brought my son in, he didn’t really understand the gravity of what was going on
7:11
I really had to come to grips, that it was about him, not about ME. Once I did that, our relationship flourished
7:12
Comment From HEIDI

RODNEY IM SURE UR OVERWHELMED WITH COMMENTS, IS THERE ANY STRUTURE TO LIVE CHAT???? IM CONFUSED??

7:12
Heidi, there are just so many coming in, and we are trying our best to answer them all. THANK YOU ALL for being here
7:12
We still have 45 minutes!
7:14
I wrote a book last year called, ‘Not My Boy!’
7:14
The reason I called it that, was because that is how I felt at the diagnosis. ‘No way, Not my boy!’
7:14
Understanding the journey we were about to go on, I became very selfish
7:15
I made it all about me, when really it was about him. I did not pay attention to therapy or other families who would try and talk to me. I wouldn’t even talk to my wife!
7:15
It drove a serious wedge in our relationship. She was onboard and I wasn’t.
7:16
I think part of me was embarrassed because I didn’t know how to handle in in public, but what I realized later, is that he has gifts, just like every other kid. We must pay attention to the give HE HAS, not the gift we want him to have
7:17
Here is a link to by book, if you are interestedhttp://www.facebook.com/autismspeaks?sk=app_225711834125562
7:18
I turned a corner through an embarrassing moment
7:18
We had a collective meeting with all of my son’s therapists and I was asked to show them how I was interacting with my son at home
7:19
When I attempted to do this, everything was completely wrong. RJ gave me NO response
7:19
When the therapist interacted with him, he laughed, joked and smiled. They were connected. At that moment, I knew if I was going to have a relationship with my son, I had better educate myself and accept this.
7:19
I had better be onboard 100%
7:19
Comment From Elizabeth

How did you and your family handle the looks and stares and ugly little comments that can really make you feel bad?

7:20
Elizabeth, that was a great question
7:20
Although part of you wants to lash out at the people that are staring and passing comments
7:20
We try to use those moments as teachable moments in educating people about autism.
7:21
I talk about a moment in my book, when our son was in the 4th grade and he was not getting invited to playdates and birthday parties and his twin sister was
7:21
A lot of it was, the kids and the parents didn’t understand what was going on with RJ
7:21
we called a meeting with his classmates and hosted an ‘Autism 101′ with Holly and myself
7:22
we let the students ask questions, ‘Why doesn’t he say hello?’
7:22
ALL questions were asked and we took the ‘scary’ out of autism
7:22
we told them that there are some things RJ is Good at and some things he is bad at
7:23
He is bad at making friends, BUT he is good at giving the capitals to every state
7:23
The kids got it
7:23
They came back with, ‘I am good at soccer, but stink at math!’
7:23
It was the kids that educated their parents about RJ
7:23
From that moment on, he had a great group of friends, that he still has to this day
7:26
My wife and I founded The HollyRod Foundation
7:26
It is all about helping families and raising their quality of life. Once our son was diagnosed, we moved our focus to that
7:27
We began speaking about autism and how it affected our family. When we received a diagnosis, we had no outlets. We want to provide the light at the end of the tunnel
7:27
Comment From Alyssa

My husband hides behind his work as the excuse why he hasn’t really connected with our 2 autistic boys. Any ideas you have that I could use as a first step to building a relationship?

7:27
You can learn more about us here, http://www.hollyrod.org/
7:27
HI Alyssa
7:27
I was the same way.
7:28
The first step is trying to understand where he is coming from
7:28
I did not hear my wife the first 2 years after the diagnosis. She didn’t want to hear about my feelings about being a father and what I expected about my feelings for my son
7:28
I wouldn’t approach it as you need to interact with you son
7:29
Approach it as, it is okay you are feeling like this. But you need to connect with your son. Get to know him first
7:30
Comment From Mike S

isnt it true that 50 percent of married couples with a child who has autism get divorced? i think its not fair to walk away from each other because of that?? i have a 7yr old with autism been married 9 yrs

7:30
Hey Mike
7:31
I don’t know if that statistic is accurate
7:31
But i do know, that sometimes one parent takes the lead, while the other lags behind, which sometimes causes friction
7:32
It is important for both parents and the whole family to be educated and onboard. It is okay whatever all happens, as long as the family is involved
7:33
I am so impressed with all of the parents and families members on this chat. It is amazing how the community has come together and I am thrilled to be a part of it!
7:34
Comment From Lena

Hi Rodney! Our sons are the same age? How are you and Holly handling puberty? I was told that our boys are more intense than other boys their age.

7:34
ohhhh Lena, you’ve got that right!
7:34
My son is going through puberty right now
7:35
and it is definitley having some effects on his emotional state
7:35
He is certainly now interested in girls!
7:35
I have to to be honest, it scares me!!
7:35
I have had ‘The Talk’ with him several times
7:36
but until he has experienced, ‘hanging out’ or ‘holding hands’ or anything like that, I won’t know how he responds
7:36
He gets very giddy and excited when his sister’s friends come over!
7:37
Comment From Guest

Do you have any advice on how to handle meltdowns public?

7:37
This is a difficult one, because you don’t always know when they are coming
7:37
Every child is different
7:38
What works for us, is we always have candy
7:38
Some people think it hypes a child up, but it works for us in public places
7:38
Whatever works, works!
7:38
Comment From REST

How can I help my husband accept and understand our 12 yr old Aspergers son?

7:39
Hi REST
7:39
I recommend my book- I cover denial, anger, and everything in between
7:40
Sorry! here is the right link to ‘Not My Boy!’http://www.amazon.com/Not-My-Boy-Familys-Journey/dp/1401323618
7:40
Comment From Mary Len

How old is RJ now and what kind of school environment is he in?

7:40
Hi Mary Len
7:40
RJ is 13
7:41
Last year he graduated 6th grade in a mainstream school
7:41
with his twin sister!
7:41
6th grade was very difficult because he was reading at 4th grade level. He managed, with a shadow, to do very well
7:42
There was a high level of anxiety when thinking about Middle School
7:42
We decided to give him a break and create a home school program for him for a year
7:42
He will enter 7th grade Middle School in the Fall and thankfully, he will be able to have a shadow with him
7:43
There was a lot of anxiety with him in 6th grade with him
7:43
He couldn’t keep up with his friends academically, which created behavioral issues that were not good for him
7:43
He took the rigid pressure of going directly to 7th grade, and he is back to being a happy excited, flouring kid
7:44
It is OKAY that he goes at his pace, not someone elses
7:44
It is about, the child, and what is best for him
7:46
Comment From anne

do you know where families can go who have an adult child with autism and get financial help for services that medicaid no longer covers, like dental

7:46
Hi Anne
7:47
This is a question that so many families face
7:47
Holly and I are frequently asked about this
7:47
Autism Speaks developed, the ‘Transition Tool Kit’
7:47
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
7:48
It covers housing, employment, advocacy, and an array of other topics
7:48
Comment From Demi

I heard yall tried the non glutien diet how has that worked for your son?

7:48
Hey Demi!
7:48
We did try the non gluten diet
7:49
It helped him, especially when he was younger, with focus
7:49
He is allergic to peanuts
7:49
With his diet over the last 10 yeas we have monitored it for him and it has been very helpful
7:50
Comment From Kathy

Rodney, I have two boys both with Autism, one is 8 the other is 6. You are so right, we have to educate society and ourselves to be able to help every child with Autism. Everyday is a blessing and a battle but you begin to appreciate the little things that are accomplished. I thank you and Holly for all of the wonderful things you have brought to help with the fight for a cure. Thank You

7:50
Thank you Kathy
7:50
Comment From Keisha

I saw the episode of The Talk that you did with Holly and Joe. It was so awesome. I think I need to buy your book for my husband. Somethimes we end up on opposites sides in dealing with our 12 yr old’s Autism

7:51
Hi Keisha – that was a great show too!
7:51
A many thanks to CBS and ‘The Talk’
7:52
Thank you for allowing Holly to have a voice
7:53
Comment From Paula

Is your son aware of his diagnosis? I haven’t told my son yet. I think he knows he is different though. The school is pressuring me to tell him. I just can’t bring myself to do that.

7:53
Here is a link to ‘The Talk’s’ Show with Autism Dads!
7:54
hi Paula
7:54
Yes, my son is aware
7:54
We thought it was important that he understood what autism was
7:54
He needed to know what he was going through
7:54
Around 6 or 7
7:55
It is important for kids understand what is in front of them
7:55
Now that he is 13, he blames autism!
7:55
Now he thinks it is funny!
7:56
Once, he left pizza under his mattress for 2 weeks
7:56
and he blamed autism!
7:56
When I asked him why!
7:57
It was my pleasure to be here today to chat with all of the families. It is very clear you are all passionate and are trying to find the best way to advocate for your child
7:57
Remember, we are in this together
7:57
I encourage you to visit autismspeaks.org for more resources and information
7:58
My best advice would be, continue to educate the public
7:58
The more people understand, the more acceptance our kids will have
7:58
Thank you so much – I wish I could stay longer!
  1. chris
    June 17, 2011 at 11:17 am

    I was diagnosed at 17 with Aspergers. There is really no help for older teens and adults where I live. I researched everything I could and learned to work to better myself. I have gotten better at social skills (still have some issues though). I have been helping a lot of people understand what Autism is and how to work with it.

  2. KATHIE RODRIGUEZ
    June 17, 2011 at 1:12 pm

    Hi i have a 8 yr old son with autism. I have been fighting a non-stop battle with the school due to my son not getting the education he needs in order to reach his academic needs. His IEP is niot being followed through either. There is an autism private school i went and toured and spoke with the administator. The school is amazing,but the cost is out of my reach. Where can I get help to pay for the tuition

    • Jennifer Smith
      June 23, 2011 at 8:53 pm

      Have you tried to get him on SSI? I have heard that if you can prove your case and have a good enough reason, they will help with the cost. I haven’t had to do anything like that but I have a friend that got some help with her son. Wish you luck.

  3. Glenn Larkin
    June 20, 2011 at 5:16 pm

    Rodney/Holly, Bless you for your goodness to those with Autism and other neurological disabilities. I found very basic but enlighteing information in your interview. I’m a grandfather of a 4 year old grandson who has disagnosed Autism. I hurt for and with him every day….but know that all the time I can work and play with him will improve his life. I love him so very much and his name is William. Best, Glenn Larkin

  4. Jennifer Smith
    June 23, 2011 at 8:50 pm

    My son is 6 years old and is said to be in the middle of the spectrum of autism. He talks good, using 2 to 3 word sentences. We just had him tested for seizurs for we think he is having silent short ones. For the past 2 weeks, I saw a high increase in his eating habits and hyperness. Could this just be a growth thing? He gets stimming so bad that I just have to let him go. Its like someone gave him an energy drink. How do I get him to come down ‘off his high’? Thank you.

  5. June 24, 2011 at 12:57 pm

    HEY Rodney, Mike Dixon founder Erika Lynn Foundation, could always use some help. erikalynn.org 908-715-1694

  6. June 26, 2011 at 10:57 am

    hi im new with this and My son is age 18 having pdd ptsd, bipolar. He is being placed in foster care and I worked so hard taking care of his mood disorder that got out of hand since he was 14 with difficult drs until last year finally using abilify meds and its working great. I m so tired of child protective service court situation tell me rules that I have to follow and I dont need this. I m from Columbus ohio. I m looking for support group that I m trying to get into. Problem is im deaf. Thanks, linda

  7. Domenick Bizzaro
    July 31, 2011 at 10:48 am

    Hi…I have a 20 year daughter with autism …Elizabeth..she is my world and a wonderful person.We lately are have a major problem with Elizabeth… she has done this before when she was very young to her godparents and this behavior never returned until now..every time we pick Elizabeth up from her school and residence at the Anderson school for Autism..Elizabeth starts to attack my wife and myself..it can happen at anytime..one time she was wonderful all weekend we had to go to a wedding and in the church Elizabeth started to pull hair of the person in front of her while sitting in the pews of the church..it took us a while to break Elizabeth free of that grip hold…now Elizabeth is starting to do this to her Mom..When this first started it would be a few days into her visit..now it is as soon as Elizabeth gets into the car..my wife and I have been crying over this and we are so worried we will never be able to bring her home..she use to love coming home with us..we took Elizabeth everywhere camping,shopping,getting her nails done with mommy you name it Elizabeth’s done it..she use to love to go boating and especially camping…home depot and the bee gees are a few of her favorite things..we are hoping for some info from this forum the school Elizabeth goes to is one of the best but maybe a new set of ideas is needed..Hoping for the best and desperately trying to get my daughter back
    Thank you Dom

  1. July 18, 2011 at 9:23 am

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,058 other followers

%d bloggers like this: