As you may have seen on my Instagram, I was recently extremely lucky
to be able to attend the Apraxia Kids National Conference. And I
don’t even like or use this word but I’m going to say it was a
blessing because I can’t think of a better word. It was an
incredible opportunity, provided for us by some amazing grandparents,
and Instagram.
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| All the parents put their child's picture on their badge! |
Let’s back up. As
a “wear my heart on my sleeve” type, I’ve been all over social
media once our middle child received a diagnosis of CAS, Childhood
Apraxia of Speech, this past spring. An Instagram friend reached out
and suggested I follow a friend of hers, Monique, who posts
beautifully about her 5 year old son with CAS. I immediately followed
and went FULL STALKER MODE. Like that person who suddenly starts
following you and writes a long comment on a post from 3 months ago.
I was just so excited to see things like another little kid using an
iPad with the same program Royce uses.
Monique and I
started chatting through DMs and she told me about the Apraxia Kids
organization, and the upcoming national conference. Tickets weren’t
cheap, so I thought it was something to keep on our radar for maybe 2
years from now, once I’d been back at work awhile. But it was in
Pittsburgh this year, which is less than four hours away from us. The
idea kept nagging at me of trying to attend this year, when it was so
close, and this diagnosis was so new and confusing and overwhelming.
Somehow it all came
together. My father was extremely generous and got us a conference
ticket for “Royce’s” birthday (I mean, if you can’t get away
with that at age 3, when can you? Plus we don’t need more toys like
so so do not need more toys). My mom and stepfather and inlaws helped
us out with hotel, gas, and food. Royce is truly so lucky to have all
of his grandparents so devoted to helping him, even if he’s
clueless about it right now and just thinks they are fun people to
FaceTime and play with.
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| Hotel room view! |
Not even 3 months after the diagnosis, we descended on Pittsburgh to learn all we could about it! I must say, living in Baltimore for the past 14 years, I was led to believe Pittsburgh is a horrendous place, never to be visited. That couldn’t be further from the truth! It was such a lovely, fun city.
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Let’s do some Q&A!
Thanks to Goldthings for every single question.
Who was the
conference for? Parents, and Speech Language Pathologists (SLPs).
It was about 50/50, with sessions specific to both parties. It was
not designed for children – in fact, our kids did not even set foot
in the hotel hosting the conference. It was a typical conference
format of sessions in conference rooms with power point presentations
about a variety of topics, so not exactly something a three year old
would be interested in.
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So what did you
do with the kids? The conference actually allowed couples to
share an entry. We took turns attending sessions/hanging with the
kids. Our hotel was about a mile away, so this meant we missed all
the networking/session break stuff, because whoever was at the
conference would walk back, hand off the ID badge, and the other
person would book it back to the next session. Not a perfectly ideal
situation, but we still got a ton out of it.
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Were there any
A-HA moments for you? Honestly, I’m not sure yet. It was
information overload. In a good way, but still, wow. We haven’t
even finished sharing with each other everything we’ve learned from
the sessions yet. It was also a lot to take in emotionally. Basically
two days straight of focusing on this huge source of stress and worry
in my life. One of my big fears was confirmed – statistically,
children with CAS do poorly in reading. Which is kind of dumb for me
to be upset about. I know how reading is taught, and I know what
Royce struggles with. I guess it was just one of those trying to
stick my head in the sand situations trying to pretend I don’t see
the obvious.
That was kind of
negative. I don’t mean it to be. We learned a ton of helpful stuff.
But things also weren’t sugarcoated. I feel like sometimes I can
come off like rah rah Apraxia cheerleader, but the fact is, it’s a
disability, it sucks, and I would give anything to magically make it
go away tomorrow. That’s not going to happen, but we now are armed
with so much new information to help navigate through it.
Like this handy infographic!
Did you learn
about any new technologies? Yes! One of the ways they sometimes
help children in therapy is by using an ultrasound. I’m going to do
a terrible job describing this but they design a special mouthpiece
to be worn by the child, it connects to a laptop, and a computer
program allows them to see the movements their tongue makes so they
can adjust as needed. How cool is that? This is, of course, for much
older children, like teenagers, but I got to see a video of a girl
using it and it was really interesting.
In terms of more
relevant learning, I attended a session that gave an overview of the
most common, research based therapy methods for children with CAS.
Because children with CAS struggle to use their brain to create a
motor plan with their mouth for what they want to say, a lot of
therapy is designed to create muscle memory for words. This is very
different from traditional therapy (I have no idea what tradition
speech therapy looks like, but after the conference I know it’s
different than CAS therapy). One presenter gave the example of
learning to tie your shoes. Initially, it requires a lot of thought,
focus, jerky movements as it’s new and different. Now, most adults
can probably tie their shoes in the dark while carrying on a
conversation, because the muscle memory is there after doing it
countless times. That’s what therapy aims to do with speech,
because forming words feels like that awkward and challenging initial
shoe tying.
Was the
conference solely for Childhood Apraxia of Speech? Yep! It is
extremely common for children with this diagnosis to have other
diagnoses as well, such as other motor planning struggles, like being
slower to learn to walk, go up stairs, etc. However, this conference
was focused on issues pertaining to CAS.
Were any adults
there with CAS? Yes! One of the
board members was diagnosed with CAS in the 90s as a child. There was
also a specific panel of teenagers and even younger children with CAS
speaking. We did not attend this – while it sounds amazing, it
feels just SO far from where we are right now, I’m just not ready.
I hope in a few years to feel differently.
What sessions did
you attend? I’ll paraphrase
titles to give the general idea.
Apraxia
101
Encouraging
risk taking in children with speech disorders
Eric
went to a father’s only luncheon and informed me very proudly he is
in a dad facebook support group with his new friends now
Advocating
for your child’s IEP
An
overview of the types of research based therapies for CAS
How
to help siblings of a child with CAS
What’d the
person not attending the session do with the kids?
Two
words: hotel pool. That killed a lot of time. The conference was also
across the river, so we walked to the bridge to meet Eric one time to
switch off. The boys loved seeing the river but they walked a good
two miles round trip! Dalton even said his feet hurt from walking.
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After the first conference day, we walked to Primanti Bros to get
delicious sandwiches, and ate them outside at this big lighted splash
pad thing while the kids ran through the water. They were in heaven.
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While this is definitely what many of my friends would consider a
nightmare, all five of us stayed in one hotel room and it worked
great for us. Our kids basically always want a parent in close
proximity when they sleep, so having both of them in the very same
room was their dream and they slept pretty well. We just played super
loud white noise. I actually almost was late to the conference on day
2 because I woke up at 7:15 and it started at 8! No one else was up!
I hadn’t set an alarm because our kids are always up long before
7am.
What's your travel situation with kids? Is 5 in one hotel room your nightmare?
