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Journeys Thru Apraxia
Only recently have doctors started diagnosing apraxia, and so most people know nothing
about the condition. And there is a relatively small amount of information about
apraxia available. Parents of children with apraxia are often frustrated as they
try to find out what’s “wrong” with their child. Typically, the parents find themselves
on a “journey” that starts when they notice their child missing developmental milestones.
The buttons below take you to the stories of several apraxic children associated
with the Sign n’ Say Class. We hope that sharing these stories might give comfort
to those not as far along on their journey through apraxia. You can also e-mail
a Sign’ n’ Say parent with any questions you might have by clicking
here.
Christopher’s Story
 Christopher
was our first child, so we had no idea that he should be babbling away by his first
birthday. Thankfully, our friends and pediatrician did, and told us something might
be wrong. A hearing test came up normal, so our pediatrician connected us to the
early intervention services of Hamilton County M.R.D.D., and soon a speech therapist,
a physical therapist and an occupational therapist were visiting our house every
two weeks to work with Christopher. However, by his second birthday he was still
saying no words, and very few sounds, so we met with a neurologist, who ordered
a CAT scan, the results of which indicated a lack of myelin in his brain, increasing
the potential for neurological problems.
Also, by his second birthday Christopher had started speech therapy at Cincinnati
Children’s Hospital. The therapist, after some testing, suggested Christopher had
oral apraxia. While this term indicates a set of symptoms rather than a cause and
effect, it gave us a diagnosis we could investigate and begin the long process of
trying to find help for our son.
At age three, early intervention no longer provided home visits, so Christopher
received his therapy at a preschool for children with disabilities at the local
elementary school. This preschool with its small class size and mix of half typically
developing children and half disabled children was a great environment for Christopher
to begin learning. We had been teaching Christopher sign language in order to allow
him to express himself and to minimize his frustration from not being able to speak.
It occurred to us that he might benefit from going to a school where everyone knew
sign language and therefore knew what he was saying. So for two and a half years
we sent Christopher to St. Rita’s School for the deaf in the morning and the local
preschool in the afternoon. He actually only remained in the preschool at St. Rita’s
for a couple of weeks, because the caring staff at St. Rita’s believed this little
four year old boy who could sign so well would be better served in the K-2 class
with Ellen Brigger.
Kindergarten was a very tough year for Christopher. The original plan was to continue
the half days at St. Rita’s and half days in kindergarten at the local school. Sign
language was Christopher’s primary form of communication, and so we asked the local
school district to provide a signing interpreter for his new kindergarten class,
where no one knew sign language. We eventually had to hire a lawyer who specialized
in special education to make our case. The school district at last relented, but
ended up placing him for a large part of the day in a class with children with multiple
and mental handicaps. While the focus of kindergarten was the beginning stages of
academic learning, the only goals of the multiple handicap classroom were the teaching
of “life skills” and not academics. We were distressed to learn that Christopher
was spending more and more time in the multiple handicap classroom, despite the
fact that his IEP indicated that in 3 months he was to be in full time kindergarten.
Evidently, it was easier for his kindergarten teacher to ship Christopher off to
the multiple handicap room than to take the extra time and effort to teach our son
and her 28 other students
Meanwhile, at St.Rita’s it was the exact opposite. Christopher was blossoming academically
and socially, signing fluently and beginning to read. The final decision to move
him to St. Rita’s full time came at an IEP meeting with the local school as we were
making the case for St. Rita School as the “least restrictive environment”. We were
told our son was “failing” kindergarten because he could not cut with scissors,
write letters, or color within the lines. The only thing they could offer was the
multi handicap class, where he would learn how to tie his shoes and eventually graduate
with an attendance certificate instead of a diploma. We suggested that when he was
president of his own company, he would probably hire people to cut with scissors,
write letters, and color within the lines for him. These skills were only one of
the many ways to academic achievement. Christopher needed academics. The school
clearly did not understand apraxia, and the need to adapt the curriculum to work
around the problems apraxia creates. The next month Christopher was going to St.
Rita School full time.
Three years later, under Ellen’s tutelage, Christopher continues to blossom. He
is reading at his grade level, is progressing well in his academics, and has come
so far in his speech that even non-signing people can understand much of what he
says. We were overjoyed when St. Rita’s decided to start the Sign n’ Say class specializing
in apraxia. Now, instead of being an outcast sent away to the special ed. room every
day, he is in a classroom with children very much like he, with a teacher who knows
how to educate him, in a school where everyone can understand what he says.
Jeremy’s Story
 Jeremy’s
story begins in October of 1998. When he was born, an astute nurse noticed he was
having seizures. His right hand was methodically fisting and his eyes methodically
blinking. He was immediately transferred to the Cincinnati Children’s Medical Center
where we learned he had suffered strokes in-utero. Since Jeremy was adopted, we
did not have his full prenatal history, but the doctor said these were likely caused
by the birth mother using cocaine during her pregnancy. This was never confirmed,
but was accepted as a reasonable explanation. Jeremy was put on anti-seizure medication
for the first ten months of his life.
Jeremy seemed to reach most of his developmental milestones at typical ages, but
we noticed that he never babbled or cooed. When he was just over two years old we
were put in touch with the Early Intervention Program available through the county
in which we lived. A wonderful speech language pathologist named Lynn visited our
home every week to work with Jeremy. She was the first to introduce me to the word
“Apraxia.” She explained the motor planning problems of apraxia and gave me valuable
printed information and told me of a wonderful web site for parents of kids with
the condition.
This SLP also suggested we teach Jeremy some very basic sign language to help him
communicate his needs and cut down on his frustration. As his mother, I was very
resistant to this at first. I was afraid that if he learned sign language that he
would be satisfied with that and would no longer try to learn to talk. Lynn told
me that the research showed quite the opposite. The signing showed the children
the power of communication and made them hungry to communicate better. She also
said that once they mastered saying a word, they usually would drop the sign.
The first signs Jeremy learned were ‘more’, ‘please’,’ thank you’, ‘milk’ and ‘juice’.
I was absolutely amazed at how quickly he learned these and how much these few little
signs helped with his behavior. Instead of pointing and becoming frustrated and
angry as I tried to figure out what he wanted, he was “telling me” what he wanted.
Every week he learned new signs and became a much happier little boy.
When Jeremy aged out of Early Intervention we continued with various other speech
therapists. During the summer of 2002 we had a wonderful SLP named Marty. She took
a personal interest in Jeremy and told me about St. Rita’s School for the Deaf.
They have a program called LOFT, (Language Opportunities For Tots.) They had hearing
impaired and typical developing children together and they used both sign language
and speaking. They call this “total communication.” She helped me to get Jeremy
enrolled that summer. He did so much better at St. Rita’s than he had done in the
other preschool program that there was no comparison. I knew right away that he
would thrive in the St. Rita’s environment. The Pediatric Neurologist and pediatrician
agreed, and we began working on an IEP for Jeremy. The school system agreed that
St. Rita’s would be the least restrictive environment for him, and in the fall of
2002 Jeremy began Preschool at St. Rita’s.
He is now in the middle of his first grade year there. His teacher, Ellen Brigger,
is wonderful and now has a class of only apraxic children. Jeremy is progressing
educationally as well as socially. And the added bonus is that St. Rita’s speech
therapy program is second to none in my opinion. Jeremy has a wonderful SLP, Karen
Rosen, and he has made steady progress in his speech and signing since he has been
enrolled.
Caleb's Story
 My
husband, Dennis, and I were married in June 1998. We were married for three years
before we decided to have a child. Our first pregnancy ended in a miscarriage and
we were very heartbroken. But then when we found out on Easter Sunday 2001 that
we were expecting again. Our excitement grew and our first son, Caleb John, was
born on December 7, 2001, weighing 7 pounds. Caleb was born three weeks early because
I was pre-eclampsic, but was nevertheless was considered full term and very healthy.
Like many other children, Caleb was diagnosed with recurring ear infections. After
four ear infections we asked the pediatrician if he could be seen by an Ear, Nose
and Throat (ENT) specialist. The pediatrician said no. He didn’t believe it was
necessary yet and continued to give Caleb stronger antibiotics.
Then on a Saturday when the pediatrician’s office was closed, the antibiotics the
pediatrician had prescribed for Caleb caused our son to break out in a rash and
hives. We took him to Cincinnati Children’s Urgent Care. The doctor on duty looked
into Caleb’s ears and unlike the pediatrician, strongly recommended that because
Caleb’s ear canals were so narrow we should immediately have him examined by an
ENT.
We were finally able to make an appointment with an ENT at Cincinnati Children’s
Hospital. I thought the ENT would recommend what many physicians recommend for children
with recurring ear infections -- put a set of PE Tubes in Caleb’s ears, a relatively
simple and effective remedy. However, the ENT looked in our son’s ears and said
there is no way Caleb could have had any ear infections because he had nothing in
his ears to get infected.
The staff at Cincinnati Children’s Hospital immediately gave Caleb a hearing test.
This was the first time Caleb had had a hearing test. I should point out that this
is because mandatory hearing tests weren’t required by law at the time of his birth,
so he didn’t have one then. After the hearing test the physicians talked to us about
a CAT scan, hearing aides, speech therapy and listening therapy. We finally learned
when Caleb was 13 months old that he could not hear us. He could not hear me sing
him to sleep.
He was diagnosed with Aural Atresia and our world was turned upside down.
Dennis and I had no idea how we were even going to be able to afford everything
because our insurance would not pay. We knew the therapies the physicians talked
to us about had to be done because it was our child and we loved him. We still love
him very, very much.
Caleb was fitted for his hearing aids. I will never forget the look on his face
the first time he heard the cars drive by our house; the first time he heard the
dog bark; or the first time he heard the toilet flush. He was frightened by these
sounds that were so alien to him.
Caleb also started speech therapy at 15 months of age and continued for several
years with very little progress. He also started the public preschool at age three.
Because of his lack of significant progress despite the speech therapy and the use
of the hearing aids we were sent to Developmental Pediatrics at Cincinnati Children’s
Hospital in January 2006, one month after Caleb’s fourth birthday,. Caleb went through
extensive testing this time was diagnosed with Apraxia.
Again our world turned upside down.
We had no idea what this meant for our little boy, what questions to ask, where
to go from here, etc. Now that I think back on it and knowing what I know now, all
the signs were there. We just didn’t recognize the signs.
Shortly after Caleb’s second devastating diagnosis our second son, Clayton, was
born. Naturally we were concerned about his health, but thankfully he has shown
no signs of Apraxia.
Following his diagnosis with Apraxia, Caleb was also sent to a special ENT at Cincinnati
Children’s Hospital. Then in April 2006 Caleb went through his first reconstructive
ear surgery. It was a success! We decided to go ahead and get the other ear reconstructed
in August 2006. Again that was a success! No more hearing aids. Our son could finally
hear on his own, without any mechanical assistance.
We thought and were hoping beyond hope that because Caleb was hearing normally it
would help his development progress. So we continued sending him to for private
speech therapy and to the public school preschool. Unfortunately, our hopes were
again dashed because Caleb was still not progressing.
In the summer of 2007 we went back to Developmental Pediatrics for a follow-up visit
and Caleb went through more testing. With Caleb being older we received so much
more information and it was recommended that we look at St. Rita’s Sign – n – Say
Program. We did and discovered that it was a good fit for our Caleb. We then applied
to the Public School District to see if they would send him to St. Rita’s. After
several meetings the District officials finally agreed to fund Caleb’s education
at St. Rita’s for that school year.
Since Caleb has started at St. Rita’s he has learned to go up and down stairs and
ride a bike and so much more. Now that Caleb is learning to communicate he has lots
of friends. These are things that you just take for granted in life, but for a child
with Apraxia like Caleb, achieving these things is monumental. We feel that Caleb
has been sent to us to teach us something. We are blessed to have him in our lives
and we are blessed to have St. Rita’s help him.
Austin’s Story
 I
am a mother of two small children. The younger of my children, Austin, now five
years old was diagnosed with Apraxia at the age of two. At three years, we felt
that Austin was ready to attempt preschool, and we began researching educational
opportunities that might be suitable for him. We looked into our home school district
for services and came to the conclusion that they couldn’t offer what he needed,
so we decided to become involved in St. Rita’s School.
The single most important concern I had was that my son would have the opportunity
to communicate in whatever way possible, and St. Rita’s School could offer us that
hope. At three years he began the preschool program at St. Rita’s. His educational
program included speech therapy three times a week for twenty-five minutes each
day. Austin’s first year in preschool was a huge success, but we still felt that
there was something hindering his progress. During the summer after his first year
at St. Rita’s his doctor felt that some of his difficulties might be attributed
to tonsils, so at his recommendation we had Austin’s tonsils and adenoids removed.
One of the symptoms noticed by his doctor was chronic swallowing problems as well
as constant colds and bronchial difficulties. After we had the surgery done his
language skills skyrocketed, we saw improvements in his swallowing problems, and
his respiratory issues seemed to lessen to a substantial degree.
At four years old we started a new year of preschool at St Rita’s. and Along with
continued speech therapy, he started private physical therapy for Hypotonia. His
progress was nothing short of sensational.
This year, at five we chose to put him at St Rita’s school again. and Along with
his other therapies, we chose to enroll him in the hearing Sign n’ Say class so
that he would have the opportunity to learn and further develop his language skills
and to learn to sign. Ellen has been a tremendous influence on him, and we are convinced
that he has been welcomed, and accepted for who he is in the school.
Julian's Story
 My
name is Stephanie and I have two children, Julian and Ethan, with verbal apraxia.
I will be sharing Julian's journey to Ellen's class at Saint Rita School for the
Deaf.
Julian was born two weeks early but there were no obvious problems at this point.
He had normal development until he was a little over a year old when he "lost" his
words. Within a couple of days, he had quit making babbling noises altogether. I
was advised he should be picking his words back up soon. Months went by and my child
became very frustrated. I enrolled Julian in the Early Intervention in Clermont
County where he received speech therapy twice a week. He was also receiving individual
therapy once a week. At the age of three, Julian was enrolled in the school district’s
preschool. Julian did not make progress in his speech despite the effort everyone
was making. The teacher used some sign language with Julian, which he picked up
readily. At preschool, Julian played with the children at the preschool, but would
cry and kick as soon as he arrived home. He was withdrawn when we would go places
and people would talk to him.
Speech therapy alone was not working for my child. Julian felt trapped by the inability
to express himself so that others could understand him. I felt as if my child and
I were trapped in a corner without knowing how to get out. It was at speech therapy
where I met another little boy who was in Julian's shoes. Speech therapy did not
seem to be the answer for him either. His mother told me about a program at Saint
Rita's for severely apraxic children. This is where my child needed to be-where
he can communicate with everyone.
Words cannot express how grateful we are for the Sign and Say class at Saint Rita's.
He is now able to communicate with the students and staff. Julian now uses his voice
without being ashamed. He is extremely outgoing and compassionate towards others
and is beginning to make progress in his speech. Julian's placement at Saint Rita's
was the best decision we ever made.
Rachel's Story
 Here
is Rachel’s journey from birth to now. Rachel was born one week late on June 23rd,
2000. Everything seemed fine, and then the ear infections started. In the first
year, Rachel had two ear infections or more per month. As soon as she would finish
the medicine the ear infection would return almost within days it seemed.
Our pediatrician recommended that we see an ENT. The ENT specialist decided it would
be best for our daughter to have tubes inserted. Rachel had tubes put in at age
one. My husband and I thought GREAT this will be the end of ear infections. Well
that was not the case and the ear infections started right back up. One year later
at age two we visited the ENT again insisting he do something. We suggested that
they remove Rachel’s adenoids. We told the ENT we’re not leaving this office until
you agree to do this. Our daughter can’t go on like this. He finally agreed to remove
them. After the surgery he said her adenoids were huge. She hasn’t had a ear infection
since then. Again, we thought okay things will get better, and she will start talking
now that she can finally hear.
Another year goes by and Rachel is now three, and there is still no speech. At this
point we realize something just isn’t right. Our pediatrician suggested we make
an appointment with Children’s Hospital for evaluation. Dr. Amy Newmeyer at Children’s
Hospital diagnosed Rachel with Apraxia and Sensory Integration Disorder. She recommended
that we get Rachel into speech and Occupational therapy. We were also told to contact
Hamilton County M.R.D.D.
Hamilton County M.R.D.D told us to contact our school district about enrolling Rachel
into a preschool for children with learning disabilities. Of course, we enrolled
her in fall of 2003 in a half-day program. Rachel was put on an IEP Report, but
made no progress that year. It was so disappointing to see her struggle.
By Rachel’s 4th birthday we told our pediatrician that something else had to be
wrong. She was hitting herself, pulling her hair out and having what we thought
at that time to be awful temper tantrums. We went back to Children’s Hospital and
seen a Neurologist. They did a MRI, CAT scan and EGG. As it turns out the MRI showed
Rachel had a Chiari I Malformation of the brain. This was causing her to have terrible
headaches, but since she couldn’t speak, we had no idea. We were told at that time
that they wanted to wait to do surgery after monitoring it for a year. My husband
and I thought you have got to be kidding. We immediately went surfing the internet
for anything we could find out about Chiari I Malformations. My husband found a
wonderful chat room, and others told him about a doctor in Chicago named Dr. David
Frim. As it turns out, Dr. Frim is considered to be one of, if not the best, Pediatric
Neurosurgeons in the world. We emailed him the next day thinking he probably won’t
email us back for a week or two. To our surprise he responded the same day. Rachel
had brain surgery on October 13, 2004.
With that behind us and our daughter no longer in pain and able to hear we truly
thought the surgery was the key to her speech. She attended another year of preschool,
but was making no progress. We decided in the spring of 2005 that we would send
Rachel to full-day Kindergarten. Boy, talk about a hard year that was. The first
day of school the special education teacher called me. I cried for three days after
that phone call, and thought what have we done? As the school year went on we asked
for a one on one aide for our daughter, but given the vague guidelines around Apraxia
in public schools she didn’t qualify for one. We decided to have her repeat Kindergarten
in the fall of 2006. After the last IEP Report meeting my husband said we have got
to do something.
After a staying up to 2:00 in the morning surfing the net he found a program right
here in Cincinnati. He was so excited he couldn’t go to sleep. He contacted St.
Rita the next day and scheduled a visit to see what the program was all about. Our
first thought was, how come someone didn’t tell us about this program earlier. We
met back with our school district after Christmas break and explained our concern
that our daughter wasn’t making progress, and we found this wonderful program call
Sign N Say at St. Rita. Our local school visited St. Rita’s and felt the program
would be great for Rachel. She started there one week later.
Rachel is making a lot of improvements just in the short time she has been there.
Just the other day she signed and spelled her name. She is fully potty trained now.
This was a huge problem. We truly thought she would be in diapers the rest of her
life. She is much happier, making friends, and the best part she is learning for
once. You don’t know how wonderful that makes us feel. We feel very blessed that
Rachel is enrolled in the Sign N Say program, and have enjoyed the monthly parent
support group. It’s nice to know you’re not alone.
Julia’s Story
 Our
beautiful daughter Julia is our miracle girl. She was born in September, 2001, 13
weeks early and weighed just over one pound. She spent the first 4 ½ months of her
life in the NICU, Neonatal Intensive Care Unit. During that time she was on a ventilator
for 3 months, had surgery, several infections, transfusions, and two nights when
we thought she was not going to make it. But our little girl is a fighter and proved
everyone wrong! Julia came home from the hospital at the end of January 2002 and
was up to 4 ½ pounds. She was still on oxygen, two monitors and lots of medication.
We had a nurse who came to the house every day for months to help with her care.
We knew that being born 13 weeks early she was going to have delays and possible
issues. Not long after Julia was home we enrolled her in Early Intervention. A physical
therapist started coming to the house to work with her. Julia was delayed, but the
physical therapist was helping her to reach her milestones. The doctors had told
us that with preemies, they are caught up by 2 or 3 years of age, so that was our
goal. By her first birthday Julia was off of all of her medication, the oxygen and
the monitors. How far she had already come, she was also up to 12 pounds!
One of the things we started to notice was that Julia was not babbling and she would
not eat anything but a bottle. At the time we attributed it to the fact that she
had been on a ventilator for so long and that maybe there was some damage to her
vocal cords and/or her throat. She also was not pointing. Early Intervention brought
in a speech therapist to work with Julia. She worked on both speech and feeding
with Julia. The speech therapist worked with Julia for about a year but we did not
see any results in either area. By this point Julia was about 2 ½ years old.
We knew Julia comprehended what we were saying to her, but she could not tell us
anything. We began to sign with her, but she had real trouble trying to get her
hands to form the signs correctly. To our surprise, we discovered that Julia had
a photographic memory and had memorized the words on some of her picture flashcards.
So we made new cards with just the words on them and quizzed her to see if she really
knew the words or just the pictures. To our shock and surprise she had memorized
at least 50 words. The speech therapist suggested that maybe Julia needed an Augmentive
Communication Device. Through our local Children’s Hospital, we were able to get
a Julia a device. She really liked it and in the beginning it really helped her
say some basic needs, Juice, bottle, etc… Some of the drawbacks of the device were
that it was heavy, fragile and Julia was only able to use it if it was in the same
room as she was. We knew this was not the solution but only an aid.
We found an occupational therapist that specialized in sensory issues and feeding
therapy. The therapist told us that Julia had Sensory Processing Disorder. We had
never heard of SPD, but it certainly explained a lot of Julia’s behaviors. What
a relief to have a diagnosis that we could research and learn how to help Julia.
This therapist was also able to teach Julia how to eat some basic dry crunchy foods.
By the age of three, Julia phased out of Early Intervention. We really felt like
we had no where to turn for help. She was still not talking, just making guttural
noises. She did not point or wave bye, bye. She was not really eating solid food.
The doctors just kept telling us to wait and see. She was late to do everything
else, so she would talk, just give her time. We knew this was not the case, but
where do we go from here? No one was guiding us or helping us help our daughter.
So onto the computer we went. Searching and searching. Then we read about Apraxia
and it certainly seemed to fit. We talked with her pediatrician and he didn’t think
it was the case. We talked to the local school system. They said she did not have
it, but even if she did they wouldn’t treat her any differently. In their words,
she was just going to have to learn to deal with her situation. That was not acceptable
to us. So we got an appointment with a neurologist at Children’s hospital and he
confirmed what we already knew, Julia had Global Apraxia and Sensory Processing
Disorder and Hypotonia. Now it was all making sense. Now we could begin to figure
out how to help our daughter.
We knew that the public school system was not the right environment for Julia. They
had already let us know that they were not going to help her. We enrolled Julia
in a private pre-school program at 4 years old. They put her in a class with the
three year olds because she was not potty trained and did not talk. She also didn’t
have any social skills with other kids. The school was very nice and very good to
Julia but clearly not the right environment. She was never included with the other
kids, they really just let her do her own thing.
We had to find the right school environment for her. One where she would feel normal
and actually get the help she needed. After much searching we came across the St.
Rita website. I actually cried when I read all the information. These kids were
just like Julia. She was just like them. At the time we were living in Virginia.
We thought if this school is half as good as it appears, then we would move to Ohio.
We made our appointment to visit the school. We knew within the first 15 minutes
of our visit that this was it. This was where Julia belonged. Within four months
of our visit to St. Rita's, we had sold our home in VA, settling into our new home
in Ohio and anxiously waiting for the new school year to begin. By this time Julia
was just about to turn 5. She had one word, "Mama" and a few approximations. She
also had 10-20 signs that she could do with her Apraxic accent. We knew with her
sensory issues that this was going to be tough for her, but we also knew how important
it was for her.
Julia is now just finishing up her first year in the K-2 class. She has come so
far, and exceeded so many of our expectations. She is so happy. She has made friends,
which is a first for her, and she is talking, how liberating for her. Who would
have ever thought? At St. Rita’s they are put in situations to succeed and succeed
they do. We can’t imagine a better, more loving environment than St. Rita’s.
Sam’s Story
 Sam is
our fourth son. He was born 2 weeks early on March 14th, 1999. Except for the fact
that I went into premature labor at 32 weeks and they were able to stop theContractions
with medication and total bed rest, his birth was totally normal. He came into the
world weighing 8lbs 11ozs. and looked just like all our other boys. We did not notice
any problems with Sam till he was around 6 months old. At that time, we would notice
that sometimes in his high chair he would stare off. If we called his name or clapped
our hands, he didn’t notice us for about 30 seconds. The pediatrician at the time
said, as long as he comes back don’t worry about it. Then when Sam was 10 months
old, he has his first grand mal seizure. We went to the ER and after almost 3 hours,
they were able to stop the seizure. Since one of our other boys had had an atypical
febrile seizure prior to his second birthday, they assumed this was the same thing.
Two weeks later, we knew this was not the same. Sam had his first of many complex
partial seizures and was diagnosed with Epilepsy. The next three years were filled
with many hospital stays and doctor appointments. We could never leave Sam without
the fear that he would have another seizure. Sam had complex partial, grad mal and
drop seizures at least every three weeks for at least one day at a time.
During this time, we also noticed that Sam did not have any language skills. He
would refer to things as sounds. Every car was an umum, every stuffed animal cookie
and all his brothers names were the same. We were sent to Children’s for a language
evaluation when Sam was 2 1/2. At that time he was diagnosed as Apraxic. His neurologist
told us that epilepsy does not cause Apraxia and Apraxia does not cause epilepsy
but they do go together. We learned then that Apraxia was a neurological language
disorder and with speech therapy and medication for his epilepsy, hopefully he would
be ok. Sam’s language did seem to do much better as soon as he started speech. He
was able to name colors and shapes and have 3-4 word sentences. What Sam did not
have was conversation skills. They told us those would come in time.
While he was advancing in his speech, his epilepsy became worse. I remember going
to see his neurologist when Sam was 3 ½ and having a very emotional appointment.
Dr. Tracey Glauser at Children’s Hospital told us that he had some good news and
some bad news. The bad news was there was no medication left for Sam to try since
he had had a bad reaction to all the available meds to treat his seizures, the good
news was a new neurosurgeon had come to Children’s and could perform brain surgery
to hopefully help Sam. On June 23, 2003 Sam had his first of two surgeries to help
his epilepsy. One week later, Sam had a Left temporal lobectomy; the area of his
brain that was causing his seizures was removed. Since that time, Sam has been seizure
free and cured of epilepsy.
Since Sam’s surgery we have not had the constant worry that he would have a seizure
but we have had other worries. Sam was not advancing with his language or his social
skills. He had terrible fine motor issues that have impacted his handwriting. He
was diagnosed with ADHD when he was 5 and problems in school as well difficulties
with change. Sam has always been at a private school with small class size but eventually
he hit a wall. While in the second grade, his math skills were that of a 4th or
5th grader while his language and social skills were that of a kindergarten or 1st
grader. We decided to have some testing done (Children’s Neuro Psych had been following
him since his surgery and done testing every 6-12 months but never tested for academic
skills). We went to the Olympus Center and had complete academic testing. We were
not surprised by the results but left with the question, “what do we do now.” Sam
was diagnosed with a significant expressive and receptive language disorder as well
as pragmatic language disorder and Verbal Apraxia. What we did not realize before
was that Sam’s Apraxia diagnosis at 2 was really the root of all his issues. We
now had a diagnosis that grouped all his areas of weakness into one term including
his fine motor and motor planning.
Now that we knew all Sam’s issues were related to the Apraxia, we realized that
his current school could not meet all his needs. After hearing a TV broadcast about
the Sign and Say program at St. Rita, I called immediately. That was June ’07 and
Sam started at St. Rita in August. Sam is doing great. With the help of his teacher
Melisa and all the staff at St. Rita, Sam has adjusted wonderfully. He is finally
happy and not frustrated by his day at school. He is excited to go to school every
day and tell us what he did. We never knew how unhappy and anxious he was until
now that we see him happy and content.
Nicanor’s Story
 Our son
Nicanor was diagnosed when he was 2 yrs old. He never babbled or jargon talked as
a baby? We often wondered what was going on? All he did was yell, scream and did
not seem as happy as a baby should be. So we began to question our Dr. He sent us
to Children’s Hospital to get a speech evaluation, which is where we found out he
had APRAXIA.
We started checking into our local school system and found they could not work with
him until he was 3 years old. We sent him the 1st year as soon as they would accept
him and did not see any progress at all. At 4 all he could say was mama and dada.
I just happened to call St. Rita School for the Deaf to ask a question about car
seats and the receptionist ask what was wrong with him. I proceeded to tell her
he had Apraxia. She informed me there was a program at St. Rita’s for children with
Apraxia. We looked in to it and really like the program. Nicanor was still not progressing
at the public school and he still could not speak at the end of his 1st year. So
we decided to take the leap and enter him into St. Rita’s in the pre-school program.
He began to learn to sign and speak. When he entered the Sign-N-Say program with
Ellen Brigger, she worked very hard with him to teach him signs and to be verbal.
She learned his way of thinking. Ellen and all the other staff members got to educate
themselves on who Nicanor was and what his needs were. No one on the staff here
has ever treated him as a number, just another kid or as if he could not do anything
for himself. When he seems not to be able to do something, Ellen and the other teachers
take the time to go over it with him, even when it takes days at a time to teach
him. He has become more verbal and he signs when needed. They do not let him depend
on signs alone. The reason Nicanor used to yell and not be happy is because he could
not communicate, but now he can communicate more than ever. He is such a happy child.
We recently moved to Indiana and we thought about taking him out, but Greg Ernst
called me one day and told me this is where Nicanor needed to be. I believed that
was our sign. Our sign that showed us this is were he should be getting his education.
Not just any education, but he will learn like a typical child. He will learn that
even with his challenges he will be able to make it in life, even though it may
be hard at times. He will also learn that strangers today can be your family tomorrow.
Since we live an hour away from St. Rita’s we have chosen to have Nicanor live with
his grandparents Monday- Friday. It is one of the hardest things to do, not to have
him home everyday. However, this SIGN-N-SAY program, and the teachers and the children
here make it worth it. We know he is getting what he needs. We hope someday he will
understand. Yes, sometimes he still cries, but we let him know that in just a few
days he will be home again. Here he will not get lost in the cracks of certain education
systems. He will be treated as an individual, not as a child with a handicap. He
is Nicanor, a child with a voice, which the Sign-N-say Class has given him.
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