I’ve been
thinking a lot about time lately. All along as a parent, I’ve found myself
wishing time would slow down. Wishing those little newborn sounds would last a
little longer, those first smiles hang on a bit more, those milestones of
crawling and walking to not come so quickly, to savor and soak up every little
ounce of cuddling and snuggling I can. Except, lately… I’ve been thinking the
opposite on time. A small part of me wishes time would speed up… just for a
short while. I just need a peek in our future; to see our sweet boy in school,
laughing, doing well, TALKING with his peers… and then I think I could be just
fine with where we’re at right now. But that unknown- that uncertainty of
if/when he’ll get there, what it’ll be like for him, what other struggles he
might face… pretty much eat me up more than I should admit. And then I get
annoyed with myself and tell myself to get over it. I have to remind myself
sometimes to be grateful for this blessing- that he is teaching me so much
about myself, about people, and life.
I
haven’t written like I had planned but I hope over time I will find time to post more openly and write more frequently.
For me, as his mama, one big thing I want for him is a greater understanding for others of what Kellen is experiencing. Like I wrote before, prior to Kellen, I
had no idea what Childhood Apraxia of Speech was. I don’t think a lot of people
know a lot about it. I’d like to try and help change awareness and
understanding. I fear the judging. I fear it because I know how real it is. I
know how many people were giving me the side eye yesterday as Kellen
screeched/screamed when his ski boot fell off. I know because I would have done
it…I HAVE done it. To the outsider, he can appear like a child whose parents
need to get him under control. To us, we know that screeching/screaming is his
way of telling us something is wrong, he is mad/upset/scared/frustrated. Maybe
if there was more awareness and a greater understanding of things like
Childhood Apraxia of Speech, there would be less judging and more compassion.
Being a mom sure is a tough gig.
One of
the biggest things I struggle with lately is over-thinking things. Actually
that’s a lie… this is not a NEW struggle for me J ha. But for
example… Kellen laying in the snow crying/screeching yesterday after skiing- is
he crying because he’s frustrated he can’t communicate what he wants/needs? Is
he crying because he’s a 3 year old and that’s how they roll? Or is he crying
because there’s something else greater going on? Covering his ears when he’s mad
(a new thing that just started two weeks ago)… normal? apraxia related?
something else? It drives me crazy the mind games I play with myself. I wish I
could get myself to not be so hyper focused on it sometimes. Because then- I
look at him now- as he’s dancing along with Daniel Tiger, shooting hoops in the
living room and signing “more” to me with regards to the cheezits he’s
currently eating out of a toy pan and I think… he’s fine, he’s perfect, he’s
wonderful.
Because
he turned three on January 2nd (speaking of time… how did that
happen?!), we had a re-eval with a new speech person from the ISD as well as
the woman who has been working with him through Early On. He qualifies to receive
speech at the elementary school because he is of school age. However, we’re not
ready for him to be in preschool quite yet (a whole other post on this).
Thankfully, my mother-in-law works at the school which is his home school and
she is awesome. She committed to going to get him from daycare (about a mile
from the school) at 2:15 and bringing him back to school for speech at 2:30-3
once a week. Did I mention she’s amazing?
So he is now getting speech twice a week—once at the school and once at
the private therapy place. I actually think it’s nice he’s getting it from two
different styles of SLPs and two different settings. CTC (private) is very play
based and very much led by Kellen. The school speech is more structured, more
specific sound practice followed by some game/activity time.
We did have an ENT
appointment around Thanksgiving per Early On’s recommendation but that was a
disaster. The ENT was a total jerk and blew us off. He literally looked in
Kellen’s ears once each ear for 2 seconds and called it good. He then said, he’s
a boy, he’s an only child, or you know, there is always autism. I cried all
afternoon after that appointment (and the SLPs that have worked with him- 3,
the OT who worked with him, and our pediatrician have no autism concerns).
Again, a time where I was holding onto a sliver of hope that maybe just maybe
there was an “easy fix” to something that is something I fear unfortunately is going
to be a long battle for our sweet boy.
Currently Kellen has
about 20 approximations (“words”) in his repertoire- many of which sound the
same but he uses in correct context. Ma, Da, bu (bus), bu-bu (school bus), bu
(buns = butt :) ),
du (duck), a sound that is like an exaggerated pucker for truck, bu-bu
(bubble), puh (help), doh (no), yah, da (dog), dar (star), a sound like shaw (Chauncey), ba (ball), bo (boat), puh-puh
(purple), pah (stop), coo (thank you), doh (tractor), plus one animal sound
(owl), a siren sound, and uses sign language for more, eat, please, cat, dog,
horse, help, and more. He also has a very large collection of meaningful gestures,
all of which help him get a point across when he cannot with words. Oh yeah and
he can screech/scream/whine with the best of them too. :) Other “normal” mouth things he can’t do but
should be able to developmentally are blow bubbles or stick out his tongue when
prompted. He JUST figured out how to blow air out to do things like play a
harmonica. This is certainly growth
since we first started speech- but it has been exceedingly slow. I think
sometimes you think (well okay I did) that once we started speech, that things
would just start clicking. I also think a small part of me thought that maybe
magically once we hit three things would just start clicking. Neither of these
is the case. His SLP said to me once, he’s just going to be a kid that this is
a marathon for- not a sprint. They don’t feel at this time that his speech won’t
ever come – that he will sometime acquire language- we just don’t really have
an idea of when. That’s where that whole look into the future thing would be
great. :)
As is my usual, this is getting longer
than intended so I shall end this for now. Thanks for reading, thanks for learning
along with us, and remember as you see that child screeching in a grocery cart,
that maybe he/she isn’t just being a bratty toddler, but rather he/she can’t
use their words. Thanks for walking this journey beside us and for loving our
amazing little man alongside us.
<3,
Sarah
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I am so glad your MIL is able to help out and get him to speech. That is awesome that he gets therapy twice a week. He will be successful because of the amazing people (YOU and family) that he has in his corner advocating for him.
ReplyDeleteAlso...who was your ENT? What an ass!
Thank you my sweet friend. We are so lucky that she is able to take him- that's for sure!
ReplyDeleteOur ENT was Dr Shultz at cass street ENT. Here's the break down of our appointment- wait 20 minutes in waiting room. Go back to the room, he walks in looking at our notes- asked why we were there so I start to explain. He says okay well we'll probably just send you over to Munson and have them do a hearing test. I say- we already did that- that's why we came here - and tried to explain what had happened and that it was suggest to come there for a more in depth look and complete hearing test. He says - hmm let me go see if I can get those test results. He's gone for 20 more minutes. Comes back and says these results look fine- I mean his left ear isn't quite as strong but it's still fine. He's a boy. They talk later. And he's an only child. They usually talk later too. Then he glanced in both ears and said and you know, there is always autism too. I said- yup, nope that's not what we're dealing with here but thanks anyway. Then he sent us on our way. It was awful. I was so frustrated over the whole process.