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"A Very Tough Year"

 

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 everyday.  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 Children's Apraxia Network

While looking for more information and support, I stumbled upon the Children's Apraxia Network.  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 Secretary For Children’s Apraxia Network

"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."

Wow! Evan's trip to New York 

January 2001
Evan has been enrolled in the preschool disabled program (Pride) 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 good-bye 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
insure 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!  Stacey sent this update to the CHERAB grouplist in the Winter of 2001:

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

  Untitled Document

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Send mail to support with technical questions or comments about this web site. 
Copyright © 1998 - 2003
Date of last update: February 17, 2003

To find your way around, click here for the index

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist

Send mail to Support with technical questions or comments about this web site. 
Copyright © 1998 
Last modified: Friday, June 03, 2005

To find your way around the CHERAB part of this site please click here for the index.

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." -- Margaret Mead, anthropologist