I’ve enjoyed the many private messages I’ve received since the show Born This Way aired.  Because I find myself repeating many of the same things I’m going to include the info here so anyone who missed it will be able to find it. (OK, I’m lazy and don’t want to type the same things over and over)

The three topics that have been consistently voiced are 1. Fighting for Inclusion 2. Articulate Speech and 3.Appropriate Behavior–all challenges we faced.

1. Fighting for Inclusion— I’m so disgusted and sad that parents are still fighting for the right to have their child educated In a general education class in their neighborhood school with all the supports, accommodations and modifications needed to learn successfully. 

25 years after IDEA included the term “Least Restrictive Environment” in the Law…and still we have to fight?

First let’s start with Evidence—Schools are supposed to be utilizing Evidence Based Instruction Methods:

20 years of research has consistently demonstrated that the inclusion of students with disabilities in general education classrooms results in favorable outcomes for student with and without disabilities. No studies conducted since the late 1970’s have shows an advantage for student with intellectual disabilities educated in separate settings. Here’s the study–print it and ask your district’s director of special ed  to provide PUBLISHED evidence to the contrary if they are still denying inclusive placement:

http://www.mcie.org/usermedia/application/6/inclusion_works_final.pdf

Now let’s look at the current steps our legislators are taking to help–Federally there’s some great things happening with the “Every Student Succeeds Act”

A summary is here :
http://www.aucd.org/template/news.cfm?news_id=11650&parent=964&parent_title=View+All+News&url=%2Ftemplate%2Fpage.cfm%3Fid%3D964

Share that with your Director of Special Education and ask if they would like your child to teach them all and prepare them in advance.

In the state of California two things have happened that are changing our landscape!

“Under federal pressure to increase the amount of time special education students spend in general education classrooms, the California Commission on Teacher Credentialing announced it will require all future teachers to learn techniques proven to foster the success of students with disabilities, including small group instruction, behavior management and using frequent informal assessments to identify and address learning gaps.”

http://edsource.org/2015/california-approves-tougher-teacher-training-standards-to-help-mainstreaming/91731

Also A Special Education Task Force Submitted recommendations to improve outcomes for students with disabilities with the goal of establishing one system of education statewide –the report is linked here: 

http://www.cde.ca.gov/nr/ne/yr15/yr15rel18.asp 

Note: you will see a member of this task force happens to be a parent of one of the cast members of Born This Way! 

Many times the excuses used are they cannot accommodate a student with a disability in a regular education classroom…but the law includes the requirement that they do provide them…but what are accommodations and modifications? 

Here’s a great article on what accommodations and modifications are:

https://www.noodle.com/articles/special-education-accommodations-vs-modifications-explained

Here’s a checklist of supplementary supports and services–and this list doesn’t include EVERYTHING that must be tried before a student can be removed from the general education classroom.

http://www.inspireinclusion.com/wordpress/wp-content/uploads/2013/06/checklist_full.pdf

Of course there’s also the book I wrote titled, Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion about Sean’s education experiences. It’s the first and only book to chronicle a student with Down syndrome from preschool through high school graduation. It has been helpful to influence educators and gives parents some tools –it includes Sean’s IEP goals each year NOT for others to copy, but to demonstrate that he was nowhere near grade level but still succeeded in a general education setting.

2. The second biggest discussion has been around speech and articulation. 

There’s a perception that the cast of Born The Way has articulate speech but I believe the subtle captions that were added when there’s a bit of a question of what’s being said has caused many to discount their own children and adult’s language abilities. AND even at age 18, Sean was less intelligible than he is today–never ever give up on your children/adults. They continue to learn throughout their lives–just like you are continuing to learn by reading this blog.

I can only speak to Sean’s challenges–and there have been many:

1. Sean has Apraxia—

Both Oral Motor Apraxia and Verbal Apraxia. Many children with Down syndrome do and it’s critical they be assessed early for this speech disorder. Find a great private speech therapist for an evaluation  because the intensity of the therapy and the techniques do vary. Here’s a great website to reference:

http://www.apraxia-kids.org

2. Sean is deaf in his right ear and also has a Phonological Processing Disorder–

That means he doesn’t “hear” the sounds that you and I hear so that makes it harder to say them correctly. We knew Sean had a hearing impairment when he was 2 months old.  (its critical to have your child’s hearing tested early and often.) He has had several sets of ear tubes over the years and we baby his good ear. I was afraid from the beginning he would lose the hearing in his good ear–that plus the studies on how slow our kid’s speech develops,–we started with basic sign language immediately. Our kids take in and understand SO much–they just need the tools to spit the information back at us. Why do you think one of the first words all kids say is “No”? Because that’s what they hear us say the most. So it’s important to not just talk to our kids but repeat the words they need to say, and give them alternative means of communication. 

With IPAD and IPHONE Apps today there is no reason every child can’t have an Augmentative Communication Device (And guess what? GPS tracking can be but on it too!)

Here’s info on what Augmentative Communication is:

http://www.asha.org/public/speech/disorders/AAC/

For school-age children the school district can assess them for Assistive Technology and even provide it. But don’t get stuck in a fight when your child needs it now. There are a lot of used IPhones out there that can be had on the cheap. 

3. Sean also was born with a high narrow palate.

He couldn’t be understood at all until after he had a palate expander and braces–in fourth grade! 

Even then he was still difficult to understand and today still says “gog” for “dog” and mixes up many sounds that need tongue placement front to back. 

(I wrote about our orthodontist experience in my second book, Who’s The Slow Learner? Adventures in Independence.)

So why can you understand him on Born This Way?  Most of what he says he has said before–and the more you practice the same phrases the better you can say them. 

“Ladies Man” comes out clear because he tells everyone he is one. That phrase is repeated several times a day. 

He loves Justin Bieber, but pronounces it “Beaver”  Say it, and pay attention to where your tongue and lips are when you say ‘Bieber vs Beaver.’

Sean had speech therapy until age 20 but his biggest improvement came when we turned his stubborn streak into determination. Determination to speak more clearly. He knows he is difficult to understand, and he knows when someone doesn’t understand him and politely nods and smiles as though they do. But what motivated him?

In a nice way we always ask him, “Say that again, I didn’t understand your words.” And if we still can’t understand we will repeat what part we did understand and ask what the other phrase or word he’s trying to say. We are calm and  patient–so he doesn’t get as frustrated as he could get. 

Sean has wanted to be on TV since the minute Becky Jackson took Glee by storm. So I explained to him that to be on TV people have to understand your speech. I really never thought he would end up on TV, but when the dreams are articulated, then giving the tools to reach the goal won’t hurt. At one point he wanted to play on the Laker’s basketball team.  I didn’t tell him he was way too short…I told him he had better practice. And practicing basketball is good exercise, so he benefited from trying to reach his goal.
(pun not intended)

Because he wanted to be on TV HE was determined to work hard on his articulation both on his own and in therapy sessions.  If he had no motivation I can assure you he would have more captions than he does. If you are recording the show–close your eyes and listen. Then watch the same scene again with the captions. I’m interested to hear your thoughts on his articulation after doing that.

And that brings me back to school–and life.  Anything that is taught, any therapy that is provided needs  to be meaningful to the person learning and receiving the therapy. If it’s not then the interest and drive to learn will be lost.

Another factor that made a difference in Sean’s speech was being included in regular education classes with many talkative children. They were his constant good speech models. 

And it was  very interesting how his classmates would always know what he was trying to say and became his interpreters when the teachers couldn’t understand him. 

3. Number three discussion topic–Behavior. 

Sean was no angel. Still isn’t.  

But the key to behavior is to first  understand that

Behavior Equals Communication–

I cannot stress that enough. Behavior equals communication, Behavior equals communication.

When a child or adult  starts acting out for no apparent reason they are reacting to something going on. If you can’t pinpoint a SITUATION that is causing it then look MEDICALLY.

Sean was freaking out in 5th grade–temper outbursts, crying for no apparent reason–which after more assessment were determined to be anxiety driven. But nothing in school or at home had changed to cause the anxiety. BUT he had been diagnosed with Hypothyroidism, and the Dr. had taken him off of the prescription Synthroid to retest him to confirm the Hypothyroidism diagnosis. I learned that untreated Hypothyroidism can cause anxiety and depression–but not from the doctor, from the internet!  (I wrote about this in Adventures in Independence.)

A friend’s daughter simply refused to get out of bed for days at a time. After a medical exam turned out she had some major gallbladder pain and needed her gallbladder removed. So look beyond the behavior to the cause. 

Today when Sean experiences anxiety he acts angry. He yells, and used to throw things and hit people.  We had to teach him to recognize that he is nervous–and sometimes simply acknowledging what it is can calm him down. “Are you feeling nervous?” Then teaching him in the moment, “Let’s not be angry, what will make you feel better? A hug?” Or “Maybe you should go outside and calm down.” He is learning to remove himself from the situation.  

We have been lucky to receive some of the best behavior supports around. We work with a behaviorist now, who acts as a therapist when Sean hits a rough patch. She even met with him and one of his past girlfriends to help them with communication issues they were having. (not marriage counseling, but everybody could use some help in this area.) Her counseling minimized the drama of the constant misunderstandings that were happening because of the differences in their receptive and expressive language.

Many people with and without disabilities can’t express their emotions and may not have the vocabulary to express their pain and discomfort, so we have to go into detective-mode.

ABA therapy is available to our kids–

If your child also has Autism, then jump on the Autism-therapy bandwagon. I know quite a few adults who have both Down syndrome and Autism who received ABA and are doing great behaviorally. 

Also–inclusion played a big part in Sean’s behavior. He had typical children who not only role-modeled how to behave but would correct him immediately if he was being inappropriate. 

We are our children’s biggest advocates.

Nobody cares as much as we do. Nobody else has to live with them. And nobody hands you a menu of services available to choose from.

I learned the most from other parents and Facebook gives that support a new meaning.

There’s a Facebook page for everything! I’ve found over 90 Facebook pages that have “Down Syndrome” in the title.

In the Facebook window Just search “Down Syndrome” and “speech” or “apraxia” or  or “autism” or “100%  Inclusion for Individuals With Special Educational Needs” Or “Educational Strategies for Schildren w/ Down syndrome”  or get on any of the generic Down Syndrome Parent pages and ask where they are. There’s even a “California Parents of Down Syndrome” Facebook page. 

The key is to seek out the support and information.

We didn’t do this alone and you shouldn’t have to either. 

I am happy to answer questions via messenger at Facebook.com/www.sandraamcelweeauthor