Hi! Welcome
to my little blog. :)
If you’re new to this blog (as most of you are, since this is the first time
I’m publicly linking this blog), I invite you to go down to the November 23rd post and start at the
beginning. It will allow you to get a better understanding of what steps we’ve
taken so far to get to this point.
It’s been a
really long time since my last post, even more than my usual 3 months in
between. :) We’ve had a lot of changes since I wrote last so I will try to recap the last
few months. In June, Kellen stopped speech at the school because the school
year ended. We continued with private therapy however and we also set up an
appointment for Kellen at the Kaufman Center for August. Dave and I both were
incredibly anxious for this date. During the summer, we struggled with the
feeling that his private therapy was just not the right fit for him. While his
therapist was incredibly sweet, she was inexperienced. Every week we would go
to therapy and I would leave feeling like we were paying a whole lot of money
for what felt like not a lot of help. I often found myself leading the therapy sessions
and would prompt him during the therapy more than the therapist did. She never
said, but I kind of got the sense that she just wasn’t sure how to work with a
kid like Kellen. Through our reading and understanding of apraxia, it is not a
common disorder. It’s entirely possible for someone to be an SLP and have never
worked specifically with a child with apraxia (but know what it is). I remember
talking with our pediatrician last spring about just this. He said that
unfortunately we live in a small town and we just don’t have the level of
expertise available like a bigger city area. We kept going to speech because we
felt that at least he was getting something. But here’s the thing… private
speech is expensive. In August we finally decided it was ridiculous for us to
continue to pay weekly for something we felt was not benefiting Kellen. We made
the choice to stop private therapy for the time being and reassess after going
to the Kaufman Center and school starting.
In August, we drove down to
Detroit for his evaluation. I don’t think I would say we were nervous, but we
were absolutely anxious. Childhood Apraxia of Speech was introduced into our
world when he was 20 months. We had read about it and learned the “signs” of
it. We had been told it was probable he had CAS by multiple people. But Nancy
Kaufman is considered an expert when it comes to CAS. I think we both were just
wanting to hear from her what she felt we were up against. The evaluation
itself was really interesting. We went in a room with toys, games, etc. We were
worried about Kellen being comfortable being in there by himself with her so
she told us one of us could stay (but two in the room was too distracting for
him). We decided I would stay in the room with him and Dave got to observe through
the one-sided glass. I was told I could not interact with him at all and that
if he tried to focus on me, to redirect him to the task. This was SUPER hard! I
sat back and bit my tongue :P It was really fascinating to see what she asked
him to do and witness how he acted in this new environment. At the end of the
evaluation, she called Dave back in the room and sat and discussed her
observations with us. None of it was alarming, but it was still hard to hear
regardless. She gave us some ideas of things to do and steps to take. She also
told us that it sounded like we made the right decision with stopping his
private therapy and encouraged us to try and find someone who had experience
with apraxia or a willingness to try strategies that are best practice for
kiddos with apraxia. She also asked us to come back down with him again for a
session where she could teach us some ways to work with Kellen at home. We have
not done this yet but it is absolutely on our radar. We got him on the waiting
list for their intensive summer speech camp for next summer as well. She also encouraged us to start teaching him
sign language. She suggested it might be a great bridge to language for him.
Dave and I both walked out of the appointment incredibly overwhelmed. I started
typing it all out on my phone because writing is my preferred way to process. J
We talked it over in the car as well, just trying to work through everything.
We left there feeling that we finally had some sort of answer in his diagnosis
and that as hard as it was to hear and know for sure, we at least also knew now
how to best help him.
I
remember after we told our families about how the appointment went, there was
some, “are you guys okay?” questions and concern. It’s funny but it didn’t
really “upset” me having a diagnosis (and I don’t think it did Dave either).
Maybe it’s because we kind of already suspected going into it. Maybe it’s
because it felt more like a relief to at least know what we were up against.
But mostly, I think it’s because diagnosis or not, he was still the same kid we
drove down to Detroit with. This amazing, incredible, funny, intuitive,
observant, loving, BRAVE little boy. Our son. The sweet boy we are so blessed
to have been given. Dave and I both have the attitude that it is what it is. A
diagnosis doesn’t make him any different in our eyes. A diagnosis just gives us
information on the best ways to help him grow.
In
September, Kellen started speech at school twice a week. We made the choice to
not put him in preschool yet, but because he has an IEP, he still qualifies to
receive speech at his home school. Dave’s mom continues to be able to pick him
up from daycare twice a week and take him back to the school for speech. This
in itself has been so wonderful. We are so lucky that 1, she is able and
willing to do this, and 2, that the SLP at the school was able to coordinate
her schedule enough to accommodate for this. As a teacher, I KNOW how tricky
scheduling can be and we are so grateful that he is able to get the services he
needs at a time that works best for him. He is in daycare five days a week with
his phenomenal daycare provider. She continues to be a constant supporter of
Kellen and of us. She works so hard with him and he has learned so much from
him. Again… have I told you how lucky we are?!
We have
been super happy with how his speech is going so far. The SLP at the school is
awesome. She has helped make him a communication book that has pictures of
people, places, foods, activities. He can use this book then to help convey his
wants/needs when he doesn’t have the vocabulary to do so. This is such a cool
step for him! It is really hard for me to not be directly involved in his
speech in some way. In the past, I was taking him to his private sessions and
sitting in on them. I don’t like that I’m not able to do this anymore, truth be
told, because so often those speech sessions were learning opportunities for ME
on ways to help at home or strategies to use. However, I know this is the norm. :)
Our fall has started out as a
great one. Random proud moment. He mastered the two-wheeled scooter this
August. I remember our neighbor boy (who is nine) being shocked at how quickly
Kellen got it for being so young. I had no idea about developmental levels with
regards to this, but I did know it takes a lot to impress the little boy next
door. So I consulted my friend Google which said that most kids master the two
wheel scooter at age 5. It sounds really silly, but honestly, Kellen is behind
in a lot of ways… it was pretty exciting to feel like he was on the more
advanced end of something. He loves zipping around on the thing… his balance is
exceptional and he has no fear on it! :)
We have
been seeing some really nice growth in his speech. He continues to make great
advances in his willingness to imitate. He is always trying out new sounds and
copying things he hears. This is huge. He is still speaking in approximations
and 99.9% of the time they are one word. His speech is pretty much not
intelligible to anyone who doesn’t work with him or interact with him often.
But he’s making sounds, and he’s making progress. This is huge and all we can
ask for. He has even put two or more approximations together in an attempt to
make a sentence. Again, they sound like nothing to most people—but we know what
he’s trying to say. For example, when re-telling a story he will say, “Ssss!
Puh! Doh! Ksh!”—which in our world translates as, “Thomas! Percy! Oh no! (they)
crashed!” These steps, which seem so small and inconsequential to most, are
huge, mountain moving moments for us. We also had the opportunity recently to
speak one-on-one with a family who have a son who has apraxia. Their son is now
17 and applying to college. It was so meaningful to share their experiences, to
hear yes, that sounds just like our son. I read often about people’s
experiences with CAS, I’m part of a facebook group that has been very supporting…
but it was so helpful to talk to someone first hand and hear not only that they
know what we’re going through but also that he has overcome this challenge and
is doing great things.
I can
see how easy it could be to get down-hearted. Sometimes I have moments where I
get sad for Kellen. We were at the farm market the other day and he was riding
on a tractor. A boy came up to him and said, “Hey I want to ride that.” Kellen
just looked at him and the boy waited expectantly for K to respond. When he
didn’t, the boy looked puzzled and walked away. I wanted to push in… to explain
to the boy… but I realized that I cannot save Kellen from all these situations.
So I stood back, watching to see how he navigated it, ready to swoop in if
needed. I get sad sometimes in the silence… the car rides especially. I know
he’s observing, I know he’s thinking. I find myself wondering… what’s he
wondering about? I try to talk to him anyway, to point things out, to ask
questions he cannot verbally answer. Truthfully, it can be difficult sometimes
to try and carry on a one-sided conversation. I have moments of self-doubt,
where I think to myself I’m not doing this right. I’m not helping enough,
talking enough, working with him enough. But you know what? I don’t doubt that
Kellen knows we love him. I also know with absolute certainty, that he knows he
is safe with me and with us. That’s all I can hope for. I want my son to know
he is loved, to know he is valued, and know he is safe. Are there days where we
don’t work enough with him or push enough? Absolutely. Are there days where we
allow too much time watching Thomas and eating goldfish? Undoubtedly. But we
love that little boy more than anything in the world. We will get through this.
I have no doubt about it. I’m trying to be realistic in my expectations… this
is not going to be a quick journey, and it’s not going to be easy. He is going
to struggle, we all are. He is going to get frustrated, we all will. He is also
going to succeed and achieve so much. He is so loved and he has such a strong
foundation of people supporting him. He reminds me every day to slow down, to
observe more, to think more, to give time, to laugh, to love, and to have
constant faith.
We got this kid, we got this.<3 <3 <3
