Three steps forward and
two steps back: My life is a version of hhe bunny-hop. We make a little progress and then have a
set-back.
This week has been a hard
one. I’m not good at tough-love,
especially with my two youngest. It has
always been hard for me not to spoil my kids and sometimes I have had to undo damage
that I have inflicted, but it seems doubly hard for me not to give the two youngest
what they want. What they want is not
always what they need though and that is where the tough-love comes in. Tate and Sydney have to do without so much in
their world that I cannot always give them: regular friendships, the ability to
understand social relationships, a grade-level understanding of academics, age
appropriate motor skills, the ability to communicate what they are thinking or
feeling, and much more. So, when there
are things that I CAN give them, things they want, I tend to bend over backward
to make those things happen. Saying “no”
to them is hard for me.
It has been a long time
since I’ve left Tate at school crying. He used to cry almost every morning before school but that was before we
had the kind of IEP team we have now. I
had forgotten how hard it is to walk away from the young man that has custody
of my heart when he was sobbing. This
morning I left him, wiping tears, with his shoulders shaking. I told myself it was no big deal. I had a talk with myself about toughening up
and the “big picture.” I got a block
from school and burst into my own tears. I wanted to turn around, run back into the building, tell him that
everything that led up to the tears was a mistake, and we could let him have it
all his way. But his way, is not the
best way and his way will just handicap him further.
There is a behavior
stereotypic of autism called echolalia. It just means echoing or parroting words or phrases. Tate used to echo movie phrases or book
passages a lot. He also used to echo the
last word of every sentence he spoke. He
often did that in a whisper. It was
pretty creepy sometimes and it was one of the first behaviors we eliminated
when he was diagnosed with autism. I
worked hard to rid us of that behavior by constantly telling him not to repeat, or “No whispering.” If I had a dollar
for every time I said, “No whispering” I could probably buy a new car. I always said it with a smile on my face
because I never wanted Tate to think he was in trouble or doing something
naughty. A child with autism cannot help
the fact that they have stereotypic behaviors (stims.) A stim often looks like a behavior you would
see with Obsessive Compulsive Disorder. Stims can be redirected and eliminated sometimes but are often replaced
with other behaviors that are even worse than the original behavior. We try to eliminate the worst stims we see and
live with the milder ones.
Occasionally when Tate is
stressed he can still be heard whispering the last word or sometimes the last
sentence he spoke but he doesn’t do it often. We don’t hear the movie dialogue like we used to either, but he has
taken it to another level. He tells bits
from sitcom stories as if they really happened to him. This is where our problem today began. Tate’s favorite shows are shows on the Disney
channel: “Sam and Kat,” “Jessie,” “i-Carly” and “Good Luck Charlie.” Tate has taken scenes or jokes from the shows
and built stories around them to tell to anyone that will listen. His latest story is that he will start a
babysitting service in his apartment building (we actually live in a house)
and he will “change them, feed them, burp them” as well as have a website for
Tate’s babysitting service dot com. I
have heard this over and over for days. Before that, he was going to be in a play on the high school stage and
he was inviting people to it. I actually
had people stopping me and asking what Tate’s play was going to be about. He loved the attention. It didn’t matter to him that it was all
fantasy and he couldn’t really “deliver” a play.
This is a fairly new
thing. Three steps forward: Tate is seeking attention from others. Tate is communicating. Tate is pretending. All these things are things we WANT to see
when a kid has autism.
I didn’t know what to do
about this new behavior. At first I
listened and gave him an audience. I
tried to help him with writing a script for his play. He was not interested, nor does he really
have the ability to plan or write a play, even with help. So then I tried talking to Tate about it,
explaining that he was pretending and he couldn’t continue to talk to people
about all the pretend things. I told him
it was not appropriate and it was confusing to people. He did seem to make an effort to hide it from
me and only talk to people about his fantasies when I was not standing right
beside him. So then I tried asking him
nicely to stop. It stopped at home but
not at school or in the community.
Two steps back: The fantasy talk has become a real
problem. He is interrupting teachers,
dominating conversations with peers, and causing awkward moments because people
do not know how to respond. Soon, I fear
he will be alienating people from his world who used to enjoy his company.
So, what’s a mom to
do? Tell the dad to take care of the
problem, of course! Shawn is a very
involved dad. Tate recognizes that Mom
is a softer place to fall than Dad and Dad is the authority figure in our
home. Dad had not yet addressed the
“problem” although he knew it was becoming an issue. Last evening Dad initiated the tough-love I
asked him to. He had a serious talk with
Tate. Shawn did not frown, did not raise
his voice, and did not try to intimidate Tate in anyway, but the message was
clear: the pretend babysitting service
and all the other fantasies have to stop. There will be no more conversations based on those things. This morning I reminded Tate that he could
start conversations with his friends and teachers about a lot of things. He could talk about his pets, his Halloween
costume, or even a show he liked to watch, but he was not to talk about having
a babysitting service or anything else that was not true. He seemed okay. He stimmed a little, but not a lot. We walked into the school, I greeted his Para
and Tate choked. Then he began to
sob. He rarely cries. Seriously, I think he has gone a whole year
before without crying. In Tate’s world,
crying is big. In Tate’s world, crying
is huge. Oh how I wish he was still two
years old and I could make everything better. When Tate was two I still didn’t know what autism was. I still didn’t know our world would be turned
upside down by a disorder I didn’t recognize. In my mind I still had six “normal” kids. Until you hear the words, “Your little boy
has autism” I’m not sure you could understand how badly I would like to turn
back the clock. Ignorance was bliss.
I’ve read a lot of books
about autism. A. Lot. Of. Books. Some of the most helpful books I have read,
were written by adults with autism. Temple Grandin is a favorite author of mine, and Sean Barron is
another. Sean tells of being a young man
and being very interested in television. He also was interested in having friends but had no idea how to make a
friend or how to communicate. He didn’t
know what was socially acceptable and what was not. He knew that the cartoons and sitcoms he
watched got a lot of laughs from people so he began to memorize lines from the
shows and he would deliver them to his school mates. Because the scripted lines were not set up
properly and were out of context, Sean would get no laughter. He couldn’t figure out why and it left him
angry and confused. I often think about
this when Tate is trying to tell a joke he heard on television or is quoting
movie lines. Is it the same for
him? Is it different? Will he ever be able to tell me?
We move forward in other
ways, only to fall back. For years I
have tried to interest Tate in participating during worship services. He has been singing for years but zones out
for the rest of the service. I have
tried to get him to hold a songbook while he sings but he has complained that
it was too heavy and he couldn’t look up the numbers because it was too
hard. I have made some huge headway with
him lately. Three steps forward: Tate has learned to follow along and keep his
place while we sing hymns. He
understands how the stanzas work and the chorus repeats. Most recently, he began looking up the
numbers by himself, rarely needing help to find a hymn! He has even begun to pick up his book without me reminding him. Two steps back: Holding that “heavy” hymnbook
has brought back a stim that we broke him of many, many years ago: fanning the
corners of a book. I’m not talking about
fanning the corners for a second and putting the book away. I’m talking about becoming LOST in the
movement of the pages as they fan across his thumb. His whole focus is absorbed into the corners
of that book and it could keep his attention for twenty minutes easily. No big deal if he only does it during
worship? No! It has the potential to consume him at home
and with every book he can get his hands on. So, after we sing, I take the book, put it back in the rack and tell him
he is not allowed to touch it again until it is time to sing. What’s the big deal? Do you know how many books there are in this
world I will have to keep an eye on now? Ha! Honestly, I feel like I can
hear the music playing now. The tune is “The
Bunny Hop.”
There is a follow up to this story here: Part Two
