Very Tough Year"
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.
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.
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!
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.
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.
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!
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.
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
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
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!
Mom to Evan, and
Secretary For Children’s Apraxia Network
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
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
At school, Evan also receives individual speech therapy twice a week and
group therapy once a week. To address his Sensory Integration needs,
receives one individual occupational therapy session and a sensory motor
group. In addition, we have continued with Lori Roth, CCC-SLP, for
of private speech therapy per week. All of his therapists are
and working towards the same goals.
Evan loves his extracurricular activities as well! He continues to
gymnastics with the same teacher as last year. I made sure I signed
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
with a "shadow" (a trained high school student) to allow them to
in programs with "typical" children. Although Evan could
participated without the shadow, I felt that I wanted to ensure a
experience for him. This way, the shadow can take the time to listen
decode his communication efforts without the teacher taking time away from
the other children. Last week, the shadow asked him if he could
name and he answered E-V-A-N. I almost fainted!! I had no idea
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
Evan's aggressive behavior is all but gone. Whenever it rears its
I still get horrendous responses from the other parents. There is
little understanding and support for a child that has no visible
Things are surely looking up! Everything is falling into place,
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
adorable, funny, intelligent, happy son saying, "I wu you,
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
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
under control!!! Then the SLP spoke and said that he was really
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
teacher spoke. She first asked me if I'd like to discuss his
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
in the therapy rooms. I think the IEP goals are bullshit, but I
have to write something! Their mouths dropped! What is the
arguing? The child study team will just defend the goals and I am
everything I want anyway! It is just not worth the aggravation. They
how I feel and they are doing what is right for my son. That is all
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
speech problems. I have seen progress in that area on playdates.
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
cannot see him doing another year in the 3's. They suggested that I
up for a regular preschool for the mornings. I suggested the
through the recreation dept. because he is taking art classes there now.
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
this idea in the first place! So next year he will go 2 mornings
and 4 afternoons (preschool disabled). Now I just have to fit in
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
cooking, nature, arts and crafts, zip line, sports instruction, a
playground, and 7-10 kids in a group. Sounds absolutely perfect,
will cost us a fortune so we will be vacationing on our deck! I will
him do speech therapy on the off days.
As I left the recreation building after signing Evan up
preschool, I told them, "I just lost 20 lbs. ... 10 off each
Everything is finally falling into place. I called my neighbor and
if she could see my smile from across the street as it is the most
well-deserved smile anyone has ever had!