Greetings my humble blog followers. :) As you can see,
I continue my brilliant trend of writing a post every 3 months or so… not
incredibly effective but what I manage to find time for right now.
Kellen has made some really nice gains since I wrote last. It’s funny,
in a moment where I was feeling defeat over how slow progress has been, I came
back to this blog and reread my words. I read how many approximations/words he
had in January and realized just how many new ones he has gained since then. I
think this writing piece will be huge for me in that way. It is so incredibly
easy for me to get caught up in how far behind we are instead of looking at how
far forward we’ve come. Already we know that this is a journey we must just
blindly navigate through. It can be so hard when you look around and everyone
else seems to be speeding past you. Anyone who tells you they don’t compare
their child to others is a saint (or a liar). It is impossible not to. Just
today, while dropping Kellen off at daycare, I listened to a little one two
years younger than he is saying words he does not yet have. Two years younger!
I cried on my way to work for my little boy who watched me through the window,
thinking of that sweet voice that is trapped in him. I dream of hearing the
words of his heart; to know what he’s thinking or wondering as he’s observing
the cars driving by or the birds outside. He will be 3 ½ next month. I dream of
hearing him say, “I love you.” Except… you know that old adage, actions speak
louder than words? Absolutely, undeniably true. I have living, breathing proof
in the blue-eyed, towheaded boy who walks beside me. Without ever hearing those
words, I know undoubtedly that he loves me.
So what is life like for us now? Kellen continues to have speech therapy
2 days a week. We are not yet sure what we will do once summer hits. Last
summer he did speech twice a week at the private speech therapy place he
attends. He will lose his school speech over the summer so as of now, he will
only go once a week. This, we know is not enough… but we run into a road block
with insurance (and cost). Everything I have read about Childhood Apraxia of
Speech is that kids do best with intensive therapy. Our insurance only covers
30 visits a year (and only those 30 once our deductible is met of course). This
means that they believe that once a week, 7 months of the year is enough. I
have always been pretty blind to the understanding of insurance; yet all of the
sudden I find myself feeling angry about it. How can they define what is best
for my child? How can they define that all speech needs are the same? It’s like
trying to cram a square peg into a round hole! So… if we continue with speech
this summer and up it to 2 days a week, then we will run out of our allotted
visits. I have actually looked into hiring someone privately to come to our
house and work with him once a week and just paying them cash; that may still
be the route we take. As of my last
count, he has about 65 approximations/words. MOST of what he uses are
approximations. If you’re like me, and your child isn’t in speech, you may not
know what this means. Approximations are the beginnings of language. They are
parts of words. So saying “ba” for ball or “bu” for bus. 99% of Kellen’s words are approximations. One
thing that makes us continue to believe that he is battling Childhood Apraxia
of Speech (CAS) is that many of his approximations involve dropping the
beginning of words. This is atypical language development. So for example, his
word for orange is “juh” and his word for oval is “vul.” He also continues to
only speak one clear “word” at a time. When he speaks in greater length, you
cannot understand him at all. It all sounds like complete jargon (but he uses
great expression and often will use hand gestures too! :)).
He does an excellent job of communicating nonverbally. An example is if he
wants a snack, he will go to the kitchen and point to the cupboard. If this
does not get my attention, he will make a closed mouth sound to go with it. If
this does not work, he will come directly to me, point again and make a sound.
If I still choose to ignore him, he will try and grab my hand and take me over
there or try to push me from behind (if I’m sitting) as if to say- please come
help me.
Another big gain for us is that he has
started imitating more. It used to be that I would ask him, “can you say…” and
he would shake his head no or just refuse to try. Now, he is trying new sounds.
This is really great to see. There are letter sounds that he struggles more
with (r, l, v, w, y, to name some off the top of my head) and many of his vowel
sounds are over-generalized; we hear the schwa vowel sound more often that
others (bu – is used for bubble, bus, boat, etc) . He can produce most vowel sounds in
isolation but within the context of trying to produce a word, they sometimes get
lost. He continues to use some signs to communicate as well, but most
definitely uses nonverbal signals as his main form of communication. He is
quiet, often (though not as much as he used to be). We know that his receptive
language is strong. He can identify his colors, his shapes, some of his letters :),
he can follow directions, remembers where things are, knows what objects/people
are and do (in general) but his expressive language continues to be way behind.
One of my biggest fears for Kellen is just the
fact that his inability to communicate effectively means that he can’t fully
get his needs/wants relayed to others. For example, most 3 year olds can say to
another child who has just taken his toy away, “hey give that back, that's
mine!” Kellen cannot. This breaks my heart. We were swimming the other day and
he was playing with a rubber duck in the water. Another little boy swam over
and just took it right out of his hands. Kellen just looked at him and let him
take it. It was like, well what else can I do to let him know that’s mine? Of
course I stepped in, but I can’t always be there. I don’t want to be this
helicopter type mom but I also don’t want my sweet, loving, kind little boy to
get taken advantage of because he can’t communicate. As of now our plan is to
send him to preschool next year two days a week (but we have to tackle potty
training with him first…). I truly believe it will be good for him; the social
aspect (right now he is in daycare full time but there are only a handful of
kids… but his daycare teacher is AMAZING), the ability to get speech services
possibly even twice a week there… but I worry about him holding his own with
his peers. He is a very easy-going kid. I worry about not knowing what goes on
during his school day because he can’t fully tell me when he gets home what he
did. These things are on my brain already and I just have to tell myself- that
is still several months away… we will tackle that hurdle when we get there.
Tomorrow is Apraxia Awareness Day. We
actually do not yet have a formal Childhood Apraxia of Speech diagnosis. Yet,
we have been told by multiple people (OT, SLPs) that this is likely where we
will end up; it has just been hard up until more recently because he is so
young and because he had so few words. We have talked about taking Kellen
downstate this summer to do a more comprehensive evaluation and get a complete
diagnosis. Over the last two years, apraxia, a word which I had never heard,
has now become a part of my vernacular. It has become a disorder that has
become very close to my heart. We struggled with whether to do anything for
Apraxia Awareness Day or not; but we have decided that part of our responsibility
to Kellen is to help spread awareness. Tomorrow is the first real step toward
doing this. I hope that by initiating conversation about our struggles, others
may also share theirs or we may be reminded to practice patience and tolerance.
I am a sea of quotes in this post but apraxia’s silent existence is a reminder
to me (and will hopefully be a reminder to others) of that age old saying, “Be
kind. Everyone you meet is fighting a battle you know nothing about.” We are so
extremely proud of our little warrior and so extremely proud to be members of
his army.The biggest thing is that apraxia does not define Kellen. There are a million adjectives I could use to describe this unbelievable little boy, but that is not one of them. While we know this may be a long journey to him finding his voice, we feel blessed that this is all we're facing and feel blessed because God gave us this amazing child for a reason. We are learning so much from him and I am closer to him than I think ever possible. I am so incredibly in-tuned to him because I spend my days reading his nonverbal cues, reading his heart.
As per also my usual, this post has gotten
exceedingly long. So now, I will end this post with a few videos. If you’re
like me (curious/nosy without meaning harm :)), you may be
wondering well what does apraxia sound like? Below is what it sounds like to
us. Both of these videos are probably 6 months (or more) old but you can get a general idea. One with some
specific approximations being targeted and the other with his free talk (jargon
sounding). It's amazing re watching the approximations video now and seeing how far he has come. Also as per my usual, I thank you again. Thank you for walking
beside us through this and supporting our precious boy. Thank you for talking
to others about apraxia and for remembering its existence when you see a
seemingly “normal” child screeching, squawking, or acting up. Thank you most of
all for loving our family and being the people we want to share our story with.
<3
