20 Jun Down Syndrome & Autism
When 11-year old Robb was born, we discovered he had Down syndrome and immediately began a series of therapies to ensure that he was as strong as possible to march through life. He was happy, motivated, and took great pleasure in reading and drawing. After he developed autism around the age of 3, his interests shifted somewhat.
Today our son is a firm lover of music, the Wiggles, bluegrass, roller coasters, fast cars, swimming, jumping (on trampolines and off waterfalls) and I’m sure if he had his way would be jumping out of airplanes. He is not a fan of clothes (or taking them off and on), reading, writing, or arithmetic. We as parents and therapists are in high gear concentrating on teaching him the life skills that he needs to be an independent young man. After that, we will take those skills and enhance them to support further more advanced skills that will help him vocationally and socially. The sky diving simply has to wait.
These days, OT, PT, speech,* ABA and other therapies are designed to teach important life skills. Our primary goals right now are teaching self management and communication. These life skills are not only required for any independent daily living, but also preserve one’s dignity.
Robb is an easy going guy. He is also easily distracted and relatively passive, which makes him difficult to motivate. He needs concrete proof that something really good is going to happen before he performs the job you require of him. Otherwise he just doesn’t see the point. For example, he will happily work on dressing—if it means putting on his bathing suit and going into the pool. Or he will certainly practice fine motor skills by working on attaching our dog’s leash—and continue on with physical work to climb the hill up the driveway—if it means getting to the trampoline at the end.
The challenge, therefore, is not only to keep tasks interesting, but to keep them consistent as well. ABA focuses on motivation and creates the repetition Robb needs. It breaks down the big skill like unloading groceries into small steps (first carry the bag to the counter, then pull the items out one by one) and as he manages each step individually it is then built back into the whole task. Therapists prompt Robb to be successful along the learning process to ensure he understands the task isn’t just one step and completes it at an appropriate pace. This prompting is deliberately faded out to promote independence. These days Robb can be found setting the table, sorting his laundry, and helping around the house in a variety of ways while his therapist sits across the room solely to make sure he completes the task.
An important parallel focus for us and Robb is communication. Although he has quite a few signs, they are Robb-centric and the average person outside our home-even someone familiar with sign language-is not going to be able to interpret them. In order to give Robb opportunity to communicate with others and learn to read he is learning to use a computer. He is able to use a touch screen to request food items, select his favorite music videos, and his current work is learning to type. This is being reinforced within the home in the hopes to transfer Robb from communicating with signs and *PECS to touching an iPad which is far more socially acceptable. Who isn’t walking around with an iPad these days?
We are incredibly proud of the progress Robb has made and one day we hope to be there cheering him on as he takes on sky diving too.
-Siri Lise Doub
*ABA Therapy: Applied Behavior Analysis
*PECS: Picture Exchange Communication System
Annmarie RaitePosted at 14:21h, 22 June
Robb is a very determined young man who is lucky to have such a supportive family, as they are lucky to have such a motivated son/ brother. You can really see the love in that family, and it’s so nice to see how hard everyone works together in that wonderful family. Keep up the good work! You are truly an inspiration.
Justine BrownPosted at 14:29h, 22 June
Hi..My son was originally diagnosed with Downs at birth..he is now 6 and being evaluated for Autism overlapping the Downs..i just knew something else was wrong. I would appreciate any ideas that have worked with Robb. Right now,my son uses signs and Pecs at school. But it is hard for him to communicate with others outside our home..BENNY uses his own unique signs which only few of us know…So any advice is appreciated. Its been a rough road but my son is a trooper.
Joanne HiebertPosted at 19:23h, 23 June
This too could describe our life with our 16 year son, Scott. Thank you for providing me with fresh inspirtion through your video to become better organized to push myself this summer. It becomes old after 16 years, but, we must remain our children’s advocates… Thank you!
robb doubPosted at 01:25h, 27 June
Like your son, Robb has his own signs…but they can both communicate with them–and that’s a good place to start.
Before Robb became engaged in communication, as he is now, he would often completely withdraw into himself–or cry–since (I believe) he felt that he had no control over his environment. I felt like he was completely gone to us then. So even though most people can’t understand his signs today, he is definitely understanding now how useful it is to BE ABLE to communicate.
When Robb first started using signs, we decided that the best hope for success was to have Robb sign or use PECS at every turn. Consistency and frequency–even though only a select few knew his signs. At that point–and now–he obviously did best when highly motivated, so we asked him to communicate for ANYTHING he wanted (if he knew the sign or had a PEC for the item). We discussed this with everyone in his life–teachers, therapists, family member– so that there would be opportunities to communicate at every turn. With this practice we hoped that communication would become a natural process for him and he would understand how useful the process of communication is. (Having everyone in Robb’s life do this with him also took some of the load off us–which was great!!) Mostly, though, this beginning piece (consistency and frequency) is critical I believe because even though Robb’s signs are not understood by everyone, he is learning at this point that he CAN communicate and that communication is helpful, useful, and produces results.
Our next step will be to fine tune his computer use since that will translate to a larger audience and prove most useful to him.
Kate ChatePosted at 15:00h, 22 June
You could be absolutely describing our son, household and life. Am so delighted to hear such a resonant, positive and reaffirming message. Thank you Thank you. Kate
donna hammPosted at 15:09h, 22 June
for the the hardest thing was to learn socialization. i wish that i had learned that as a child because my life was very lonley i became a hermit for many years. at 40 i joined a church and even though it is still hard at times to feel that i fit in. i for the first time have motivation to do the things that i can. I for the first know love of others. it really doesnt matter much what i can do or not if i dont have people in my life to share my experences with. not judging your choices just saying as an autisic life is hard but without friends it even harder.
Rosemary A. DavisPosted at 16:01h, 22 June
My first comment written got sent before I finished typing it, by mistake, sorry. I have worked with children with the PECS and
ABA Therapy and have seen this work wonders. You are such a great family and Robb is so lucky to have all of you! My brothers son Philip is 4 and a half and does get to use these programs at school, but the parents at home are not as educated or willing to educate themselves on these tried and true methods. I live six hour drive away so it is too hard for me to be of more assistance to them. Dan, my brother, is so overwhelmed with basic care of his son that he is exhausted. He is also a licensed Electrician and has a tough time working his jobs due to Philip’s care. He does not own a computer and refuses to learn or read anything about it. His girlfriend, Philip’s mom, lives with them too but she works most of Philip’s waking hours and she is overwhelmed with his care too. I feel so sad for there family but more importantly for Philip! He is so bright and has a wonderful, loving personality! He has trouble communicating his needs to his parents and so he tantrums often. I wish I could help Daniel realize that he needs a computer and more importantly Philip needs one so they can learn it together! The PECS and ABA Therapy could change their world! I will not give up I will continue to suggest my useful advise until I get him to get a computer. If only to be able to read such inspiring stories and scenarios!!! Thank you for posting about your beautiful son Robb and sorry for my venting! I am so frustrated watching this happen to Philip! Thanks again! Rosemary A. Davis
Paula JoPosted at 16:24h, 22 June
PECS is a wonderful system!! I will be praying for Phillip
Rosemary A. DavisPosted at 16:06h, 22 June
I appreciate this video and thank Robb’s mom for posting it! Very inpiring and let’s me see that there is hope for my nephew Philip who is autistic too!
lorenaPosted at 16:33h, 22 June
He is wonderful. I have a daughter that also has a dual diagnosis. hearing imparied and autism. she uses sign to communicate, she is non verbal and attends school for the deaf and hearing impaired. i often wonder if we made the right choice in school. i am afraid to bring her to another school where she may lose her signs and therefore all communications skills, but I do wonder if she will be better off at a school that emphasizes ABA. UGHHHH decisions decisions
Javier MoretPosted at 16:50h, 22 June
I have never seen a child that acts so much like my 7 year old Sebastian who’s Down Syndrome and also diagnosed in the Autistic Spectrum Disorder. The vocal sounds are also similar. He likes music, ketchup and the outdoor activities, specially the ones that are extreme ! hehehehe God Bless Robb and best wishes to you all. Thanks for sharing.
Meredith BovePosted at 17:17h, 22 June
What a wonderful and inspiring story. I believe that children like Rob are a gift to the world and have so much to share. Our family has been blessed with an autistic child and he has taught us so much. Thanks to Robb’s mom for sharing this.
Julio VillanuevaPosted at 03:30h, 23 June
I’m the father of a 8-year old boy who was diagnosed with autism (mild)
My son is able to do almost anything except talking. His speech is 0. He’s been receiving therapy since he was 3 and a lot of progress we’ve seen specially in his skills and cognitive area. But still no speech.
I was looking at the video and was wondering, what’s that program you use w/the computer? I guess it’s a touch display but I’m not familiar with the program/software. Could you provide info about it?
robb doubPosted at 20:27h, 28 June
We have a touch screen computer and it’s a very simple process, really. We have photos of real items (with text underneath) in a Word document. We pull the document up on the computer and Robb points to requested items. We hope to use a similar program on an IPAD.
Also, there is a post-it note program on our program that brings up an entire keyboard. That is what Robb uses to practice typing his name.
Marlee RoebuckPosted at 22:03h, 28 June
Great video! My son Joshua is 7. He has the duel diagnosis. Please posts more! It is so great to see a similar child being independent. Also how it was e explained. Very helpful 🙂
StacyPosted at 17:33h, 22 July
The video of the beautiful 11 year old boy names Robb with Down Syndrome and Autism had me wearing a smile on my face the entire 5 minutes. I have been doubly blessed with identical twin boys both with Down Syndrome and PDD Autism. When I heard Robb humming and seeing some of his facial expressions I felt as though I was looking at my precious sons. Thank you for sharing his successes and all the hard work that goes into them.