I would like to introduce you to my 4 year old son, Ryan. He was born on February 25, 2010, being very
healthy. Ryan sat up before 6 months and
started walking at 10 months...and by that point I knew that we should have
invested in a cow as he would eat us out of house and home! At around a year he started to say simple one-syllable words like "dog," there were maybe 4 or 5. By the time he was 18 months old he stopped talking
altogether...not one word or sound.
We worried, but we have known other kids that took a little longer to
talk, so I did research. My husband and
I prayed and pleaded, and then we made a decision. We decided that we would give him until he
was 2 years old to say even one word.
His second birthday came and he still wasn’t saying anything, so at his
physical we requested a referral to a specialist. His evaluation was done on the 1st of May by
a brilliant speech pathologist named Debra.
After the evaluation she told us that our little boy had a profound
speech delay, meaning more than 12 months behind. She told us that she would not make a
diagnosis until he had been in therapy for several months. She recommended two 30-minute speech sessions
per week. However the only office that
offered the needed therapy and would take our insurance was a one-hour drive from our home. Our insurance
also required us to pay $45 per session...that added to the $15 for gas to and
from the office. $60 per session…our
hearts fell because we knew that financially speaking we just couldn’t put out
$120 a week. We decided that once a week
was better than nothing, and for the next 18 months every Thursday afternoon we
took him to see Debra.
We watched as she dragged sounds and approximations out of
him..."n" came first and thus "no" entered into our lives
finally and we were overjoyed to hear it.
We got to "arr-kee"(Barkley, our dog), "mom," and "I-eem"(ice
cream). The first time he ever saw or
played with an ipad was in the course of therapy, and I watched as he thrived
with it…he loved it. We soon discovered
his love for Batman "at-man"...and this ushered in our knowledge that
our little made could make the most amazing sound effects ever while playing
with his Batmans. He started making car
sounds, fighting sounds, and crashing sounds.
He has since become an expert at shooting sounds.
Between 6 and 8 months into therapy his therapist asked me if I knew
anything about apraxia and having devoured everything on the internet about
speech delay, I told her that I understood what it was. This is when the diagnosis came: Childhood Apraxia of Speech. After doing much research I came to
understand that this would take years to get him caught up. But we were given the hope that with all luck
on our side he would enter kindergarten without any problems.
Almost a year after the first evaluation we did another with the school
district to get him started with them, so that he could get all the time he
needed and not be held back because we couldn't afford it. I discovered that things move faster when you
already have a medical diagnosis in place.
We did have to go through the stupidity of a school nurse trying to give
him a vision and hearing screening, which of course he wouldn’t cooperate with
but it was amusing. After my very first
IEP, which was mind-numbing at best, I walked away knowing that neither of
those women knew anything about Childhood Apraxia of Speech.
They made some completely unrealistic goals for him to accomplish; for
example they wanted him to be able to say "elephant" when he couldn't
even say "dad”. I was skeptical
about their ability to treat him, but I remained hopeful. When school rolled around again he would
start with whoever it was...and it turned out she was a God-send, because she
was there just long enough to change the ridiculous goals on his IEP to
something far more reasonable. She also
did the recommendation for CASANA for a new iPad, which he was granted and
received before the beginning of December last year.
After watching my son struggle with language all these years, I realized
how much the ability to speak is taken for granted. Heaven knows I did before I had him; getting
his sister to shut up was always the difficulty with her. What I have with Ryan is a big jumble of
frustration and anger, and he has no ability to tell me what is going on in his
head. I have learned to rely on the
spirit to aid me in my attempts to understand what he needs and wants. As his mom I know what he needs instinctually,
and I have had to learn to curb my desires to just take care of it. I have learned that he needs to ask first,
and that I have to prompt him to ask.
When I don't understand he takes my finger and shows me, then we say
what it is. When the frustration becomes
intense and we don't understand each other at all, then we hug a lot. He lies in my arms and cries while I cry too,
then we get up and play Batman together.
And every night before bed he says "oove you mom", and my
world is right again.
I like to believe that I have become a more attentive mom, and even a
more patient mom...but I'm not sure. I
have learned to listen more carefully for the little things. I have learned that therapy takes time, lots of
it. I have learned the ever-increasing
depth of a mother’s love. I have learned
to use toys and technology to help my son learn words. But I think the biggest lesson I have learned
is to celebrate the small victories and achievements. We all have lofty goals for our children and sometimes
we forget that they are children and so we forget that if we don’t make a big
deal out of the small things then there will never be big things to
celebrate. As moms we have to take
things one step at a time, and be grateful for the small steps. It took almost 4 years to hear my son tell me
that he loves me…that is our biggest step yet, and every time I hear him it
melts my heart. My son is amazing, and
he has taught me love, and he has taught me patience. I believe I am a better mom because of
Childhood Apraxia of Speech, and I am grateful that I have been given the
opportunity to learn it.
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