16 Years Later Apraxia Success Story

“It’s all so hard to believe. I couldn’t see the light at the end of the tunnel at all and now we are there.” ~Stacey Abenstein

Evan (far left) with his sister Carly, President Obama, his mom (author Stacey) and dad in the oval office

At the Cherab support group, all of us were thrilled to see the inspirational update from Stacey Abenstein, our former secretary for the 501(c)3 nonprofit Cherab Foundation, about her son Evan.

2017: A Very Good Year

Hi parents! I rarely update as my son is much older (turning 20 next month!!) But I must share this as I believe my son is an inspiration! I cannot tell you all the speech and OT this kid had and the Early Intervention, Preschool Disabled, IEP through 8th grade, 504 plan through high school, and accommodations in college. But this kid is at Elon University, with valedictorians, where the average GPA for admissions is a 4.0. He is a Cinema and Television Arts major and is very involved in student media. He is the Executive Producer and Director of the following show, and apparently also steps in as the on-air talent! Who’da thunk???

OneonOne Sports: Stacey’s son Evan Abenstein talking about NBA off-season grades.

“Believe me, I fought a 16 year battle with the school district. I made one big mistake… I let them declassify him going into high school and we were not able to get extra time from College Board. He took the ACTs and did well, but didn’t finish a single one of his AP tests.”  (note from Lisa Geng:  My son Tanner went through the same thing, even if your child is doing well keep a 504 plan in place for the standardized testing for HS for all the reasons I have here)

“And BTW, cried through graduation. Every minute of graduation! Uncontrollably. Not because I was sending my little boy off the college, I was happy about that (not a minute too soon or you might have read the headlines “Mother Kills Son”) but because we fought the longest fight and look where it got us! DO. NOT. LOSE. HOPE!”

We went down for Family Weekend at Elon University and met all his professors. He is doing really well, it’s a good fit for him… academically challenging, a mid-sized school with small classes and Div I sports. I highly recommend Elon to anyone looking to give their child an excellent education where students and professors collaborate. I honestly didn’t know college could be like this!

I’m not saying all this progress was without some bumps in the road. Apraxia is rarely the only issue, but it is often identified first as it affects speech. Evan has sensory issues, much much better now, but there. With further testing later in his academic career, spatial intelligence and visual integration issues were present. Fine motor and sometimes even gross motor continue to be issues too. We had him privately tested Junior Year of high school (we knew he would need documentation to get accommodations in college) and he continued to show strengths with correlating IQ scores that were in the genius range (no kidding) and others, mentioned above, so low it left me wondering how he functioned so well!

When you average the high scores with the low scores the bottom line appears to rank in the average range. Do not let them tell you your child doesn’t need help because his testing was average!! Fight fight fight to get him what he needs!! And believe me, it’s not an easy road but one you must take. There are still teachers out there that think students taking AP classes should not need accommodations, even in nationally-ranked school districts!

My point is, keep asking for accommodations that will level the playing field, like being able to clarify answers on tests and extra time to finish. Evan’s fine motor continues to be poor so he got an accommodation to circle answers on the test instead of using a scantron. He had this accommodation throughout elementary and middle schools but they tried to take it away entering high school. You find out he still needs this one when your kid is running a 97 in freshman history and gets a 40 on a test.

When I finally convinced his teacher to go back and look at the actual test (out of habit he still circled it on the test before trying to fill in the scantron) he actually scored 100%!

These are just examples of why you cannot let your guard down. Ever. Not for a minute. I don’t mean to scare you, just to let you know that there is probably more coming and you should gear up.

You can do it!! I don’t paint a rosy picture, just a realistic one. But in the end, it is all worth it. Look at my kid. I’m exhausted but he is a superstar!”

Stacey and her son Evan -so proud!

2001: A Very Tough Year 

Back in  2001 things were not as easy for Stacey and Evan with his apraxia diagnosis. At the time Evan was 3 years and 4 months.  Here is some more insight from warrior mom Stacey on how she helped Evan succeed to the level of excellence he is at today.

Evan is standing on top of the alien from Mars 2012 From right, Khalid Mustafa, Tanner Geng, alien, Dakota Geng, Evan’s sister Carly, Evan’s dad

“The question that everyone seems to ask me is how did I know there was a problem at such a young age? My son, Evan, is now 2.8 years old and is our second child. As an infant, he babbled normally. When Evan didn’t have any words by his first birthday, we didn’t panic. Our first child, Carly, was born talking and has always been very advanced. We tried not to compare them. When Evan started saying a few words at 15 months, we were thrilled. Those words had simply vanished at 18 months! People tried to tell us that boys talked later and that Einstein didn’t talk until he was 5. I knew in my gut that there was something wrong.

A very dear friend, who also happens to be a Neurodevelopmental Pediatrician, sat down with Evan at a BBQ and determined that Evan had a severe delay in expressive language, but at 20 months, was at or above his age level in ALL other aspects. He handed me the number for Early Intervention, and the quest for answers began. Early Intervention evaluated Evan at 21 months and determined that his expressive language was at a 15 month level.

We started speech therapy at 22 months. The therapist started with the “withholding” approach. We would model the word “pretzel” and Evan would have to repeat the word to get the pretzel. Evan got so frustrated he kicked me in the shins! He could not imitate a hand motion, let alone a sound. After a week or so, and my refusal to comply, the speech therapist decided to take a different approach. After a month, She had come up with a suggested diagnosis of Apraxia of Speech.  I made her spell it, and I hit the Internet before she pulled out of the driveway. After all the research I did, all I could do was cry!

I followed up her diagnosis with a hearing test and a trip to another Neurodevelopmental Pediatrician that my friend had recommended. The diagnosis was confirmed. And so started our journey to remediation. We upped the EI speech therapy to 2 times a week and had an Occupational Therapist evaluate Evan next. We discovered that Evan had Sensory Integration Dysfunction. Just an added bonus! I read on the Apraxia-Kids LISTSERV that it is common for this combination to be present. With the Occupational Therapy in place, we trudged on.

Evan was asked to leave his preschool at 26 months. He had been hitting, or as I called it, “communicating with his hands.” The sad part was, that the director’s grandson also had apraxia, but still, there was no help or compassion, just the easy way out. We replaced preschool with gymnastics and swimming, as the gross motor activities produced the sensory input Evan needed. The hitting continued, but we could never predict when it would happen.

At 30 months we felt that Evan needed more. We added a session of private therapy and temporarily replaced OT with a group speech/OT session given in a preschool environment. Evan’s speech exploded! He went from 40 to 100 words/approximations in about 1 month!He also started to combine 2 words, which requires more motor-planning than he had ever been able to accomplish!

Now, at 32 months, Evan is amazing us every day. He presently has 3 sessions of speech, 1 session of OT, and 2 afternoons with a special education tutor. We have him enrolled in a very small, home-based toddler program, with normally developing children, twice a week, that he absolutely loves! He doesn’t seem to be any more aggressive than any other 2-year-old boy in this setting. We had determined that his aggressive behavior gets worse as the number of children increases, so we were careful to select a program that was small enough to meet his needs.

When Evan turns 3 in November, he will attend the preschool disabled program in our school district. We are hoping that Evan can catch up to his peers and be mainstreamed by kindergarten, but only time will tell. It has been a very tough year! There were times that I felt like a shut-in, never leaving the house in fear that Evan would hit other kids in frustration. There were times that I felt that the hitting must be due to bad parenting. Although I know in my heart we are doing everything we can for Evan, I can’t help but blame myself for some of the years’ events, and for not always having as much patience as I should. And what about the future? The prospects of further learning disabilities, as stated by the experts’ statistics, scare me to death! We will just have to take it one day at a time!

How I Got Involved With The 501(c)3 nonprofit Cherab Foundation

While looking for more information and support back in 2001, I stumbled upon the 501(c)3 nonprofit Cherab Foundation. My EI SLP came with me to my first meeting. While I am generally not a group kind of person, I found the information disseminated invaluable. I also felt a kinship with the people attending the meetings, as no one else I knew had a child with Apraxia.

Since that first meeting, Lisa Geng has approached me in regard to becoming the Secretary. She actually asked me what my credentials were! I told her I had none, but I felt the group was very worthwhile and I would be happy to do it. Since then, I have been caught taking the minutes in crayon! While my original objective for becoming part of the group was totally selfish, this year’s roller coaster ride has brought me to a point of wanting to help other parents next in line for the ride. There is so much involved with being a parent of a special needs child, and I hope my experiences and research can be a help to others. Together, we C.A.N. make a difference!

Stacey Abenstein

Mom to Evan, and Former Secretary 501(c)3 nonprofit Cherab Foundation

“I know you can’t hear me … but I do talk to you.
And I hear everything you say to me, too.
I hear when you laugh when I do something funny.
I hear you yell, “Hooray” when I try so hard.
I hear you tell others how you’d never
trade me for the world
even with all the trials I came with.
I hear you thank God for what a blessing
you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder
and when you ask God, “Why?!” your baby
and I know you know I understand somehow.
And you know I listen when you talk to me too

But, I want you to know, Mom … I do talk to you.”

Evan’s trip to New York when we were filmed for an apraxia segment for Inside Edition

Trip to NYC Stacey holding her son Evan with her daughter  Carly in front.  Kal standing in back of Stacey next to his mother Cindy was part of the Inside Edition segment about growing up with apraxia

Stacey’s husband far right. Lisa Geng is sitting next to her son Dakota Geng and Tanner Geng who was part of the Inside Edition segment with Lisa is next to his father Glenn

More about Evan in The Late Talker book

January 2002
Evan has been enrolled in the preschool disabled program since the last week in October.  He attends four days per week for two and a half hours per day.  He is transported by bus (fully equipped with carseats)!  On his first day, Evan was so excited to go that the bus driver had to remind him to turn around and say goodbye to Mommy!  His teacher and assistant teacher are absolutely terrific!  Evan adjusted immediately, much faster than me!  There were four kids in the class when he started that will now be growing to seven by the end of this month.  The Pride program is very structured and VERY enriched, and Evan is thriving.  It seems that Evan is “academically inclined”!

At school, Evan also receives individual speech therapy twice a week and group therapy once a week.  To address his Sensory Integration needs, he receives one individual occupational therapy session and a sensory motor group.  In addition, we have continued with Lori Roth, CCC-SLP, for one hour of private speech therapy per week.  All of his therapists are communicating and working towards the same goals.

Evan loves his extracurricular activities as well!  He continues to take gymnastics with the same teacher as last year.  I made sure I signed him up for the smallest group, as too many kids can become overwhelming for him. There are about four kids in the class and Evan is excelling!  I have recently signed Evan up for two art classes through our town’s recreation department.  They have a new program that provides children with disabilities with a “shadow” (a trained high school student) to allow them to participate in programs with “typical” children.  Although Evan could easily have participated without the shadow, I felt that I wanted to ensure a successful experience for him.  This way, the shadow can take the time to listen and decode his communication efforts without the teacher taking time away from the other children.  Last week, the shadow asked him if he could spell his name and he answered E-V-A-N.  I almost fainted!!  I had no idea that he could do that.  The other parents looked at us in amazement, as they continued on to explain that their children were nowhere close to spelling their names!  Evan and I felt GREAT.  What a huge esteem builder!!!!!

Evan’s aggressive behavior is all but gone.  Whenever it rears its ugly head, I still get horrendous responses from the other parents.  There is very little understanding and support for a child that has no visible handicaps.

Things are surely looking up!  Everything is falling into place, although I still AGONIZE over every decision I make for Evan.  I work very hard to ensure that I set Evan up to succeed.

And the thanks I get … how about my adorable, funny, intelligent, happy son saying, “I wu you, Mommy!”

You can now hear Evan on the Talking Page!

Update around 2003 a year later 

I am sitting here crying tears of joy!  I just had my parent-teacher conference and it went very well!  Evan is progressing beautifully in all areas.  First, the OT spoke.  She said he had already accomplished all his yearly goals in just 5 months!  His minor sensory issues seem to be totally under control!!!  Then the SLP spoke and said that he was really starting to increase the length of his utterances and is staying on task longer with absolutely none of the “behavior” issues she felt he started with.  She is recommending summer speech services to the child study team.  Then the teacher spoke.  She first asked me if I’d like to discuss his monitored goals from his IEP.  My answer was “absolutely not!”  I told them that I was very happy with Evan’s progress.  I like what they are doing in the classroom and in the therapy rooms.  I think the IEP goals are bullshit, but I guess they have to write something!  Their mouths dropped!  What is the point in arguing?  The child study team will just defend the goals and I am getting everything I want anyway!  It is just not worth the aggravation. They know how I feel and they are doing what is right for my son.  That is all that counts!  The teacher went on to say that she is amazed at the progress he has made socially.  He had trouble approaching the other kids because of his speech problems.  I have seen progress in that area on playdates.  She also informed me that they will be pushing him ahead into the 4’s program even though he misses the Oct. 1 cutoff (his b-day is 11/17).  They absolutely cannot see him doing another year in the 3’s.  They suggested that I sign him up for a regular preschool for the mornings.  I suggested the preschool through the recreation dept. because he is taking art classes there now.  It would be in the same classroom with the same teacher (who he absolutely loves)!  She thinks he is wonderful and was actually the one who thought up this idea in the first place!  So next year he will go 2 mornings (regular) and 4 afternoons (preschool disabled).  Now I just have to fit in gymnastics!

As for the summer, I have a deposit at a regular day camp, Harbor Hills, in Randolph.  I have him signed up for 3 full days.  He will have swimming, cooking, nature, arts and crafts, zip line, sports instruction, a beautiful playground, and 7-10 kids in a group.  Sounds absolutely perfect, right?  It will cost us a fortune so we will be vacationing on our deck!  I will have him do speech therapy on the off days. As I left the recreation building after signing Evan up for the preschool, I told them, “I just lost 20 lbs. … 10 off each shoulder!!!” Everything is finally falling into place.  I called my neighbor and asked her if she could see my smile from across the street as it is the most well-deserved smile anyone has ever had!

Stacey Abenstein

Mom to Evan, and Former Secretary 501(c)3 nonprofit Cherab Foundation

Stacey Abenstein (L) and Lisa Geng (R) 2001