AAC in the classroom

ac6bf0f38ad2aee7adc177f9fd4bd2ccDo you ever feel like this? It is sometimes difficult to convince classroom teachers that it is necessary for kiddos to have access to their AAC device at all times. There are several factors that can lead teachers to believe that access is not essential. Sometimes it just falls to the bottom of the ‘to do’ list. Other times, people may think it is an appropriate “punishment” to take away a child’s device. Still other times, the child has used the device to self-stimulate and alienated listeners to the point that purposeful communication is ignored. These are just a few of the pitfalls associated with establishing functional, purposeful use of an AAC device within the classroom setting.

The first step to overcoming these ‘speed bumps’ is to identify the problem (or combination of problems). Once you know the WHY you can tackle the solution. Cindy sent this poster that can be printed (preferably on card stock), laminated (or covered in clear contact paper which lasts longer), and posted in classrooms as a visual reminder to help facilitate implementation of AAC devices in the classroom.

What road blocks have you encountered? What solutions have you found?

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Chapter 12

In chapter 12, the family is now living in Austin.  Robert describes the kids in Austin as “different” and accepting of Schuyler and her monster.

Robert and Julie began preparing for the start of school, which means an upcoming IEP.  Two things Robert pointed out were that the teachers and support staff cared greatly for Schuyler.  Second, that he and Julie felt that they needed to take the lead and guide the staff on Schuyler’s particular needs.  The two main focuses for the upcoming school year were communication and toileting. The SLP servicing Schuyler had concerns recommending more sign language, particularly the Sign Exact English that Schuyler uses. The SLP is unfamiliar with sign language but the district offered to provide her training in the method that Schuyler was successful in.  I had many questions while Robert was discussing the IEP: “Has Schuyler been introduced to pictures?” “Have they presented any form of an AAC device?” While signing is a great way for an individual to have his or her needs met, not everyone understands sign, especially if a student uses sign approximations.  I have had success with many students who are nonverbal that use sign along with pictures or even a low or high tech device to communicate.

At the end of the chapter, Robert stated that despite all the challenges, the good days and the bad days, that “hope” might be enough for Schuyler to speak. Robert emailed Dr. Williams Dobyns regarding Schuyler’s condition and in hopes for any direction in her care. Dr. Dobyns responded, stating that he would need to see Schuyler in his office… in Chicago. This would be nearly impossible for the family due to the high cost. Robert blogged about his exchanges with Dr. Dobyns.  The next day Robert checked his email and found nearly 900 hundred dollars had been donated on Schuyler’s behalf. He then realized how important Schuyler is, not only to himself and Julie but to many people around the world.  They called the next morning and planned to travel to Chicago in January.

–Kim Campbell, SLP at Stonestreet,

Chapter 11

The family is settling into their new home in Austin.  Robert finds a new job doing what he had previously done at Barnes and Nobles when they lived in Detroit.  Schuyler is settled into a new school with a special education teacher that seems to be doing the best she can and consulting with the parents.

We are starting to learn more about Schuyler as a person- her likes and dislikes.  As a speech therapist, I also observed Robert listing things she can do: names people in her family, say “no”, and has a few signs.  He also seems to be talking less about what she can’t do.  The family seems to be accepting Schuyler’s disability at some level.

In the final scene of this chapter, Schuyler is running around the grocery and a woman cruelly comments about Schuyler’s behavior.  Robert and this woman get in a verbal altercation.  Robert tries to explain to the woman that Schuyler has a disability. The woman says, “If she can’t behave like a normal kid, then she shouldn’t be out in public with the rest of us.  Maybe you should have her institutionalized if she can’t do any better than that.”

I was surprised at Robert’s reaction to this woman’s comments.  He confronts her and directly asks for an apology.  I think it took a lot of strength to confront this woman. Robert has struggled (rightfully so) to find answers to his daughter’s “monster” and to deal with it himself.  Confronting this woman was in a way Robert confronting his doubts and denials.  I think he also realizes at this point that Schuyler’s struggles will be a lifelong endeavor. Some of her struggles will be due to her own disability, but many will be due to other people’s lack of understanding of her disability.

–Darcy Lanham, SLP at Goldsmith Elementary

Chapters 9 and 10

“No one knows for sure why it happens. It might begin with an infections, perhaps one so slight that the mother never even knows it happened.” Robert wrestles with coming to terms with what they call “the monster” referring to their new diagnosis they have received for Schuylers brain disorders called Polymicrogyria. Poly meaning ‘many’, micro meaning ‘small’, and gyria which refer to the fold in the surface of the brain. A typical brain has these folds, but a brain affected by this disease has too many and they can be smaller than they should be. Robert goes on to explain that the Polymicrogyria is really an umbrella term for a number of disorders in the same family. They all however share some common traits or symptoms including: feeding difficulties, respiratory issues, developmental delays, fine motor dysfunction, seizures, and mental retardation. Almost all of the disorders are bilateral and can be difficult to diagnose, visible only in an MRI or CT scan. Robert goes on to break down several disorder within the family of disorders, but finally arrives at Shuylers monster called ‘bilateral perisylvian polymicrogyria’ or BPP. Some of the differentiating features of BPP were facial paralysis, resulting in speech difficulties, excessive drooling that can lead to feeding problems with in infancy. Robert points out that “it lives in the deeply grooved area” of the brain call the Sylvian fissure, which impairs both speech and fine motor areas. The other “terrifying’ weapon that Schuyler’s monster could present were seizures. Robert goes on to go through a description of absence seizures and grand mal seizures. Patients suffering from BPP develop symptoms @ different times and with varying levels of severity. Some are profoundly impaired, some suffer from cebral palsy, other need feeding tubes. Shuyler suffered a ‘complete speech deficit, as well as some difficulty chewing some foods, weak but not paralyzed facial muscles”. He ends the chapter with a fearful thought of what is to come and specifically the onset of seizures. Shuyler is three at this time and the seizures typically would present around 6-10 years of age. He ends the chapter saying “There was no way of knowing if a bigger monster lay in wait for her.”

Overall impression of Chapter 9 is that Robert gives a very clinical description of ‘Shuyler’s’ monster during a fact finding stage of their process. He still gives very ‘broad’ description re: her communication and the therapist in me wanted more specifics re: her use of signs? Receptive language? Non-oral communication? Pragmatics ect. Ect. Ect. Perhaps more to come in later chapters?

In chapter 10 anger gives way to acceptance. This seems to allow Robert to begin looking at some more practical approaches to Shuyler’s monster. He begins by obsessively looking up everything he can find online about her condition and in 2003 there wasn’t much info out there. Her condition had only been identified 10 years prior. In the decade to follow there was much learned by two specific doctors/specialists. According to Robert “We found enough information to scare the crap out of us, but not really very much that was of any use to Schuyler.” Robert felt lost on what to do next and was eventually referred to visit a geneticist at Yale. Robert described the doctor as being cold and ‘wasn’t a terribly sociable person and wasn’t necessarily concerned about Shuyler as a person.’ In the end he found his no-BS approach oddly refreshing. Robert gained some comfort from this geneticist in that the doctor wasn’t terribly concerned about mental retardation and the doctor remained unconvinced that any absence seizures had occurred. The doctor told Robert “There’s a lot crap out on the Internet, and most of its wrong” “I’d just stay away from it altogether if I were you” Good advice!

The diagnosis brought them to a place that they accepted that there was no solution to Schuylers problems and nothing was going to fix it. Robert starts thinking more about Schuylers future. It seems he has gotten over the initial panic and raw anger/fear and is ready to seek out functional solutions for Shuyler’s condition. One such example is that they end up pulling Schuyler out of her classroom in Connecticut. Robert noted that one of the things that attracted them to Connecticut was the great school system, which seemed to all fall apart or did not apply any longer in the special education world. They were particularly unhappy with the large mixed classes and varying levels of needs. The most severe kids obviously attracted the most attention in the classroom and Robert noted the only individual attention they felt Schuyler received was during Speech, OT, and PT. They eventually become disenchanted with not just the schools, but with Connecticut and decide to move to Austin, Texas. So they pick up and move to Texas with Robert working at the Apple help desk. The chapter comes to a close with a termination notice from Apple. The chapter ends with Robert stepping outside on Valentine’s Day to an unexpected snow flurry and a sneaking suspicion that their move to Austin had been a mistake.

–Jason Murray, SLP at Westport Middle

Monsters update

Can you believe it is the middle of October already!?!? Halloween costumes have been on store shelves for weeks now! Since everyone is gearing up for trick-or-treat, I thought I would share an update to the Monsters Mania post from way back in 2014! If you haven’t checked this one out, you should. There are lots of fun monsters-themed ideas that will have your kiddos ready for the spooky day!

Because so many of you are using the EET program now, I wanted to also share some monsters-themed EET pages. Each sheet has a picture of a character from one of the stories featured in Monsters Mania accompanied by the EET prompts. You can use these in conjunction with the Monsters Mania materials or on their own. Also be sure to check out the monster board on our Pinterest page!

What spooky activities do you have planned?

Chapter 8: The Answer That Was False, and the Answer That Was True

Chapter 8 begins with Schuyler’s parents receiving a diagnosis, something they have been in search of for years now. After numerous appointments and evaluations, the answer they had been waiting for, was a letdown.  Schuyler was given a diagnosis of Pervasive Developmental Disorder- Not Otherwise Specified. Having her parents explain it as, not knowing “exactly what the diagnosis meant” and “seemed almost like a cop-out” makes complete sense. The name of the diagnosis itself seems unsure. Her parents were expecting an answer to what was going wrong so they could begin to fix it. All they were left with was what she didn’t have, Autism.

As her parents read through the reports over and over again, something Dad said stood out to me.

“I knew Schuyler had been a bad test subject, particularly once she’d figured out she was being observed and decided not to cooperate.”

So many parents I go over evaluations with feel this same way. They want you to know their kid can and does do more. I think it’s important to reassure parents, especially those that don’t agree with results, that this is a snap shot of a given day and not reflective of all their child’s abilities. Also, Dad’s views here remind me, as a clinician, to get a detailed account of parent’s opinions and findings. This gives parents the feeling that they’ve been heard through the assessment process (especially for our pre-k and those coming in through the diagnostic center).

Although Dad felt like this newly discovered diagnosis wasn’t absolutely correct, he was happy that it opened doors for Schuyler to receive services. He continues to show his frustration with examiners, the world and himself in not being able to unlock Schuyler’s voice. He says, “She had questions, and lots of them, and the fact that we couldn’t understand them didn’t invalidate their existence, nor the urgency with which she was asking them,” “We’d failed by not finding a way to reach her inside her unique world.” This reminds me of the importance in accepting and realizing that each child is different. One routine therapy isn’t going to reach all kids on your caseload. You have to find a way that connects to them. You cannot expect them to adapt to your world immediately, you have to find a way to enter theirs.

Feeling incomplete after their initial diagnosis of Schulyer, their original Dr. refers them to a neurologist for additional hearing tests and an MRI. Finally, they are given her REAL diagnosis. It is nothing they wanted to hear. Up until this point, their search for a diagnosis was one that while frustrating, was filled with hope. In their minds, once they had the correct diagnosis, they could start working to ‘fix’ her delays. However, with this new diagnosis, Congenital Bilateral Perisylvian Syndrome (CBPS), came such harsh words. As the doctor explains congenital as a positive, “it isn’t going to get any worse,” and as a blow to their souls, “never going to get any better, either,” all hope dwindles away.

Leaving the Doctor’s office, Dad immediately looks for an escape. He heads to work and then off driving without a particular destination in mind. As he wraps up this chapter, we see him flash through all the stages of grief in just a few hours. Denial, as he reads articles about her condition, wanting doctor’s to dispute certain characteristics, not wanting these words associated with his daughter. Anger, as he rages at the church, screaming and throwing his soda can. Bargaining, as he banters with God asking for it to be him instead. Depression, as he lay on the ground head down crying. Finally, acceptance, at least for the moment, as he picks himself up to head home towards, “his family, our monster and the future.”

–Lindsey Nicklies Noonan, SLP at Bowen, Greathouse, and St. Matthews

CHAPTER 7 – NOTHING MAKES US SO LONEY AS OUR SECRETS

In chapter 7, it was revealed the toll that Schuyler’s developmental delays took on the family as well as the secrets that were being kept from each other.   We learned that Robert and Julie both had affairs that took place at this desperate time.  We learned that Robert suffered from depression and Julie suffered from despair over her child’s inability to communicate; both feeling like failures as a parent. As Schuyler was missing developmental milestones, their marriage started to suffer and they began to pull away from each other.  Robert discussed his despair and contemplated jumping off a bridge thinking that perhaps Schuyler would be better off without him.  Julie moved out but left Schuyler with Robert, giving him a reason to live.  In the end, Julie returned home after a week and a day and they slowly reconnected and began rebuilding their lives.

–Karen Reynolds, SLP at Hartstern Elemantary