We have a diagnosis

[belle&beast]

Does anyone know if ABA can be used on a child with Down syndrome with good results? My son has Down syndrome and is nonverbal (he uses sign language), but I don't know a lot about ABA. But would look into it if it has been shown to help. No one has ever said anything to me about using it though.

Thanks!

Sandra

I am not sure about ABA with children with DS, but I will be sure to ask tomorrow at work. I have had great luck with PECS (Picture Exchange Communication System) with children with all types of disabilities. Some parents are worried that PECS will mean that their child will remain nonverbal, however it encourages them to speak and make requests and initiate communication. Also, in my experience kids with DS tend to develop speech a lot later than others due to low muscle tone and oral motor difficulties. Hang in there and if you have any specific questions, feel free to send me a PM.

 

[OKWMom]

I’ve tried three different times to respond to your post, but I have been unsure how to begin. First, I want to express my sorrow for your loss. Others who have been down this road know the pain of losing the hopes and dreams you had for your child. My daughter was diagnosed seven years ago and the pain has not yet fully gone away.

Second, I want to commend you for staying on top of your child’s medical team and getting a diagnosis quickly. These first years are precious in your son’s development and you should not delay with his treatment. I also believe in the benefits of ABA. If your son’s programming is well constructed, you should begin to see improvements very quickly.

Finally, I want to offer you support in whatever decision you think is the right one for your son. Know that there will be many days when you will feel like Sisyphus, condemned for eternity to pushing the boulder up the mountain, only to have it roll back down as soon as it reaches the top. But you will get through. It became easier for me once we began my daughter’s treatment as I felt we were working toward something positive.

Good luck and best wishes.

 

[SandrainNC]

Thank you Belle&Beast! I appreciate it.

Some parents are worried that PECS will mean that their child will remain nonverbal, however it encourages them to speak and make requests and initiate communication.

I have heard the same about sign language, but he has to be able to communicate some way. It would be too frustrating not to. They use talking buttons (can't remember the correct name - something mac) at school too.

Sandra

 

[stenickar]

Does anyone know if ABA can be used on a child with Down syndrome with good results? My son has Down syndrome and is nonverbal (he uses sign language), but I don't know a lot about ABA. But would look into it if it has been shown to help. No one has ever said anything to me about using it though.

Thanks!

Sandra

I feel that ABA can be used with any child, even typically developing kids. ABA is very good for non verbal kids as you can still "teach" them even if they can't respond verbally. ABA is also sometimes referred to as "Discrete trials". Discrete trials works on breaking task that you want to teach into small steps. Then you make sure that the child has the first step mastered before you add step 2.
The important thing is to make sure you have a qualified instructor to do ABA/discrete trials.

 

[Forevryoung]

Does anyone know if ABA can be used on a child with Down syndrome with good results? My son has Down syndrome and is nonverbal (he uses sign language), but I don't know a lot about ABA. But would look into it if it has been shown to help. No one has ever said anything to me about using it though.

Thanks!

Sandra

I'm going to go off-topic to respond to this. I have no qualifications *yet* but I am a first years masters student in speech language pathology.

I would imagine your son isn't completely nonverbal, does he make any sounds at all?

It has been PROVEN in research that augmented communication (in your son's case, sign language) only improves and fosters speech. Children with Downs syndrome have unique characteristics including motor issues and a generally smaller mouth creating a situation where it is very difficult to move the articulators (tongue etc) in the intricate ways required to produce speech. I can pull up the research article if you want, just PM me. One of the researchers is Dr. Janice Light, you should look up some of her work on children with Downs Syndrome and augmented communication.

You are 100% correct that your son needs a way to communicate, just try to make sure that his sign vocabulary is not limited by what his teachers and you know.

Let me know if you need information related to language/augmented communication etc. It's my specialty and I have access to a ton of resources.

 

[Bugsmom73]

Actually Teddy is verbal, somewhat. His speech is not clear but we use sign, PECS and spoken word. We have gotten away from sign and he is trying to say so much. Thank you for all your support. I would appreciate more suggestions.

 

[SandrainNC]

Thanks everybody!

Forevryoung - My son does makes sounds and he can actually say "mama", "bye bye", but it sounds like a nasally "my my" and I am pretty sure he is telling us "no" on occasion.

We are constantly look up new words to sign for him (which is not a problem). He learns them pretty quick, but it does limit who he can talk to (like if his teachers don't know that particular sign). I have been told he also has speech apraxia, which of course doesn't help. So I am always open to anything that could help him.

Sandra

 

[pokemon_master]

Hey. Sadly, I can't offer much advice on this, but I would like to give you some good luck with this. I find that getting things out of the way while the child is young is a good thing; this way you can get help for the rest of his life sorted now.

I hope things go well

 

[thompsonfamily]

Hello all! We have a DS who is 8 that was diagnosised with autism when he was 4. He is completely nonverbal (babbles, but nothing comprehendable). I know when he was diagnosised, we were just really glad to know what to do and how to handle it.
He is such a joy everyday; happy all of the time, not a care in the world. it just reminds us how happy we should be everyday.
He does use some sign, but due to low muscle tone it makes it hard for him to do. We did get a communication device for him to use and he is starting to type. We also do speech, ot & pt therapy. All of the rest of the therapies are not available to us in rural areas. Our school has went out on a limb this year and are trying new things with him. He is writing, speed reading, and they are testing him for challenge class.
I thank God everyday for my blessings and pray that he will keep me strong. Sometimes I feel like he has more faith in me than I do, but he knows what is best.

Kim
Leaving for DCL&WDW Nov. 15th! Can't Wait!! Hope DS8 & DS13 have the time of their lives!!!!

 

[irish_trip_mom]

My heart goes out to you. I remember getting the phone call (yes phone call!) that my sons were both dx with moderate to severe autism and I felt like life was shattered. I was so sad for myself and my husband, for my boys and for their sister (they are triplets.) I couldn't even say it out loud because I would instantly cry. We mourned for about two weeks, then a friend said to me the words that echo through my mind each day: GET BUSY!

She was so right, and from that moment on, I haven't stopped. We started an ABA/Verbal Behavior program funded partially by our school district. I advocated for the school district's support. I basically am the manager of the program, hiring college students to do the work, but I oversee everything and I am extremely involved. I've been to countless trainings over the past two years.

Someone asked what ABA was...aba is taking skills and breaking them down into small components and teaching them through repetition. Once one part of the skill is mastered, you add another component. For example, you may first start receptively identifying a picture. Then receptively identifying between a field of three. Then matching that picture to another...and so on. A session is usually taught 80% mastered skills/20% new skills (because we all feel better when we get a lot right, right?) And it is all taught errorlessly (PM me if you want more info.)

Nevertheless, we started 2.5 years ago. My one little guy wasn't even talking, neither gave eye contact, had perserverative behaviors, you name it. The one started talking within 3 weeks of starting and hasn't stopped since (actually got soap in his mouth yesterday for talking back!) His developmental ped says he no longer meets the criteria for diagnosis. Do I think he has autism? Sure, esp. since his identical brother does. But do I think he can go indistinguishable from his peers. You bet! He's been in a general ed class for the past two years, and my hope is for him to continue with his sister without an aide next year in our Catholic elementary school. Both boys are verbal, both give eye contact, play appropriately.

His brother still has issues, but his are mostly behavioral and communicative. He now WANTS to be with us. We just need to work on reciprocal conversations. He still uses his language mostly to have his needs met, but he does sometimes comment on things going on.

My point is that this will be saddest part, but there will be many joyous moments ahead, as your child's accomplishments will be huge to you because you know how hard he worked to get there. The road is just a bit different than planned. I liked OKWMom's example of the boulder. Yes, you will often feel like you are fighting an endless fight...you are trying to care for your child, and advocate for their education and deal with the financial aspects of autism. It will drain you at times. But try to build in your support system. Take breaks from all of this. Find other parents in the same boat that you'll refer to your "1 in 166 club" friends. And try to maintain friends where you aren't talking constantly about therapies or school systems.

 

[freckles and boo]

But how is this possible? My understanding is once you are autistic, you are always austistic....

I think there's a lot of wrong diagnosis going on out there.

ASD means Autism Spectrum Disorder. The term "on the spectrum" essentially means that a child exhibits symptoms that can be attributed to autism. There are many degress of autism but many people who are unfamiliar with it assume every child with autism is profoundly disabled. This isn't true, and even children whose level of functioning is lower can benefit from help. With intervention and therapy nearly every child with autism can make some level of progress in communication and behaviors. Sometimes the progress is significant enough that the symptoms become well-managed and nearly invisible, but that doesn't mean at the original diagnosis was incorrect at the time it was made. It just means that when a problem is recognized, acknowledged, and addressed children with autism can, and do, exceed expectations.

 

[jodifla]

ASD means Autism Spectrum Disorder. The term "on the spectrum" essentially means that a child exhibits symptoms that can be attributed to autism. There are many degress of autism but many people who are unfamiliar with it assume every child with autism is profoundly disabled. This isn't true, and even children whose level of functioning is lower can benefit from help. With intervention and therapy nearly every child with autism can make some level of progress in communication and behaviors. Sometimes the progress is significant enough that the symptoms become well-managed and nearly invisible, but that doesn't mean at the original diagnosis was incorrect at the time it was made. It just means that when a problem is recognized, acknowledged, and addressed children with autism can, and do, exceed expectations.

Actually, I have a different viewpoint. I think since they made it a "spectrum" disorder, they are labeling way too many kids with a disorder they don't really have.

You see it a lot on the late talkers board I belong to. Parents are told their kids are autistic by someone who doesn't know what they are doing when the kids are 3 or 4...most often, in the school system. When these same folks have taken their kids to professionals, they get a different diagnosis.

Symptoms should always be treated. And I also believe parents should go with their gut....they know their children best. My beef is with an overarching label of ASD that's gotten quite far from true autism.

 

[freckles and boo]

I understand your concern, especially with regard to someone who isn't qualified to make a diagnosis. I know that the Special Ed coordinator in my school district is not the person I would want having the final say with my child. Every parent needs to be the advocate for their child and be sure that they are receiving an accurate assessment. There is a big difference in a child who was a late-talker (like my husband) and a child who has a significant communication disorder (like our daughter). She had (and still has) lots of echolalic speech, but limited language skills - very, very little understanding of what she was hearing or saying when she was two and three. Because my husband was a late-talker we assumed she would catch up, too. It didn't happen and of course I feel fifty different kinds of guilt because I couldn't imagine that there was anything wrong with our beautiful kid. We are a year into therapy and we are now very careful about getting her attention, speaking clearly and using simple phrasing, using visual prompts, etc. We still have a long way to go. Additionally she is hyposensitive, has limited interest in being social with her peers, and exhibits a few other behaviors that put her "on the spectrum". On the flip side, she is super bright, happy, affectionate with the people in her life, curious about the world, always busy and completely fearless. If a provisional diagnosis of autism is what it takes to get her the services and therapies she needs, I can live with it.

 

[Judy from Boise]

I think it was a light year leap in diagnosis and treatment when everyone finally got on board that autism is a "spectrum"! It would be horrible to return to the bad old days!
But, I also agree that diagnosis can often be more accurate if done later.
We were counseled by our therapy team to just keep the "speech, social, and development delays" as our diagnosis until our DD turned 7 . Since the delay dx qualified her for all services, that is the route we took.

 

[Bugsmom73]

I think it was a light year leap in diagnosis and treatment when everyone finally got on board that autism is a "spectrum"! It would be horrible to return to the bad old days!
But, I also agree that diagnosis can often be more accurate if done later.
We were counseled by our therapy team to just keep the "speech, social, and development delays" as our diagnosis until our DD turned 7 . Since the delay dx qualified her for all services, that is the route we took.

It would be nice but our insurance does not cover what above and beyond school for a developmental delay.

 

[Judy from Boise]

Then it is completely understandable to go through the formal process. We were lucky in that we didn't need/use anything beyond govt services. Our DD had no physical need for OT,PT etc....which makes it so less complicated.

 

[Brightsy]

My own journey w/in the world of ASD is mostly a positive one. Yes, we got dealt the nasty hand when my Vinny, 5 (well he will be on Thursday), was diagnosed ASD when he was just under 2 1/2 yrs. old. Back then he was pretty much non-verbal w/ less than 10 recognizable words. He didn't smile a lot, but was social w/ me and his daddy and a few select adults (not so much w/ his big bro.). He had minimal eye contact going on and a whole SLEW of stims and sensory issues.
Since early intervention started his words have grown to number in 200's, he can speak in complete sentences and is starting to get the idea about personal pronouns. His stims are few, he still has some sensory issues, of course, but we deal with them. He smiles a lot, loves to take pictures and be photographed. Show the kid a stage and he's on it, show him a microphone and he's singing and dancing. He's a regular Vaudevillian! He loves Mickey and Cirque Du Soleil, all things Noggin. He's starting to really play w/ other kids, some. And his latest acheivements include potty training and following two-step instructions!
His Pre-K teacher thinks that if he continues to progress the way he has been we could be looking at full inclusion by 1st grade!
When we got the diagnosis I had already prepped for it, it was a relief to have it "official" (he was diagnosed by a child psychiatrist fwiw). I didn't have any loss of dreams, not really, just a changing of them.
A couple we know has an older son, 15 or so, with Aspergers. He and my Vinny seemed to connect at a recent camping trip we all took. When he learned that Vinny is autistic this teens face lit up like a spotlight, like Illuminations, and he smiled at me and said "There's NOTHING we can't do!!!!Look at me!"

Sara

 

[TBuss]

Hi all,

First off, to the OP, as others have said - you are wrestling with a lot of emotions right now and rightfully so. It appears that there is a lot of resources available to you - which must be encouraging news. Hopefully, your child will start to respond to these new therapies and you will find yourself with a "revised" set of dreams and aspirations!


Secondly, my son is scheduled for a screening with a pediatric neurologist on Thursday. I set up the appointment based on the belief that he is a little "different" than other kids his age. There are some behavioral things that you all have been talking that I never knew were associated with the Autism spectrum - many of which my son has. He currently is in an inclusive first grade class. He receives occupational therapy and speech therapy. He is a happy, fun-loving child and I want to make sure that we are giving him every opportunity to flourish. I am now trying to mentally prepare myself for this appointment and whatever diagnosis is given.

 

[maynard]

so many great posts! i, too, had trouble saying autism out loud without crying! i, too, had trouble with the whole labeling issue. i, too, have ROTTEN insurance and had to pay a lot out of pocket and have a lot of stressful arguements to get whatever financial help i could from insurance. that was almost 2 years ago with my 5 year old. after reading about ASD and specifically asperger's, i realized my 11 year old has it (he was dx over the summer). yeah, labels stink. my kids are so cool. they see the world in such a unique and beautiful way. i wish educators could work more with the "typicals" on acceptance and less with mine on "what's appropriate", but that's another thread, isn't it? in order to get services, you need a label. there are so many cool interventions that i don't know how to access without one.

keep your chin up. find a mentor. it's not so bad.

 

[belle&beast]

i wish educators could work more with the "typicals" on acceptance and less with mine on "what's appropriate", but that's another thread, isn't it?

Maybe it was in a different thread, but I posted that we have seen great changes when classroom teachers (usually helped by the resource teachers) teach a unit on differences and accepting all classmates. This works best in the early elementary grades, but older kids can benefit from learning more about disabilities. I know one mom who comes in at the beginning of each school year to explain her son's disability and why he acts the way he does and it has made a huge difference. But I totally agree, the typically developing kids need to be accepting.