A WORLD OF OUR OWN
Even though it is reported that one in 166 children
today have some form of an Autism Spectrum Disorder, when we are
out in public with Nick we are in a world of our own. To many outsiders,
Nick can ALMOST blend in with normal two-year-old behavior. Although
I do suspect that even outsiders can detect something "off";
many will not say anything and just smile.
Today we went to a birthday party at Chuck E.
Cheese for Michael's friend Rachel. I often have to employ his brother
Michael somewhat on these outings, out of necessity. Mostly it is
to hold Nick's hand when either getting out of or into the car.
Unlike most kids his age, Nick is oblivious to danger. I know most
toddlers are, but we are talking about a kid who one day walked
right into Carter Lake and walked himself under water. It was one
of the worst moments in my life, and thankfully I was right there
to pull him out immediately.
Nick will not answer to his name, so it is imperative
that he is kept close for his own safety. If he happened to get
loose in a crowd, it could be disastrous. He has no way of communicating,
and only understands certain phrases that we have used. So I often
have Michael help out in some instances where I just do not have
enough hands. So, I decided that Michael should be able to go out
and have fun despite his brother's issues; and that Nick should
go along to also have "fun".
I try to expose Nick to as many social outings
as I can possibly tolerate with him. We had barely got into the
door when he began to scream. Luckily, he was calmed by me holding
him, and we found our party within seconds of entering - I was thankful
not to have to look for them! I automatically asked for a highchair
for Nick. The party was held in the upstairs portion of the place
which was quieter and more Nicks pace. (I think the good Lord knew
that was best!) To many of the guests, Nick was just a very quiet
fellow who entertained himself with straws,and refused to eat any
of the food. Until he unleashed his fury when I had to get Michael
a drink. I came back to hear him screaming, and thrashing himself
in the highchair. He had a crowd of people around him trying to
prevent him from tipping over.
Michael had a good time, and it was nice to see
him smiling and playing with his friends. As we reached the two
hour mark of the party, Nick entertained people with singing in
a barely audible voice Rain Rain Go Away. People outside our world
think it is just the cutest thing - "Oh he is singing!"
they say. However, we here from Nickland know it really means that
he is about at his breaking point, and we had better get going SOON.
But there are two problems here: 1. Michael is nowhere to be found
and 2. Mommy has to pee! Judging from Nicks response to my absence
earlier, leaving him for a few minutes was out of the question.
I took him with me downstairs amidst all the chaos
of kids having fun. Nick lasted about two minutes before he started
to "shutdown". He clenched his hand to mine and every
few seconds I would feel him stiffen up. When we got to the bathroom
he lost it. He threw himself to the floor screaming, and I basically
dragged him into the stall with me. I have become sort of immune
to his screaming, but I realize that others are not, so I try in
vain to calm him; but it never works. It does not help that he is
pounding either his hands or his head on the back of the stall door
while screaming. I know it is the noise that irritates him, maybe
we should get him some ear phones to put on his head?
It is during outings like this that make me feel
we are an island to ourselves.
Under siege - that is what best described yesterday
with Nick. It was horrible. His tantrums are getting more frequent-and
they last - for hours. He throws things, screams at the top of his
lungs, and bangs his head on anything around. He banged it so hard
yesterday that Mike was worried he would knock himself out. Mike
was literally at breaking point. He has no idea of how to handle
this. It breaks his heart to see his son hurt himself.
It breaks my heart too. I have never felt as
hopeless as I did yesterday. How do you parent a kid like this?
We had a long talk yesterday about how to handle his meltdowns.
Mike was mad that I put him in his room and shut the door - why?
Because he just screamed even more and banged his head even harder.
Mike did end up spanking him - a fact that neither of us are proud
of. We talked yesterday about how we should deal with this - this
is different than when Michael would throw a tantrum. This has really
put our marriage to the test, and I can see how couples would divorce
over such issues. I know Mike loves Nick with all his heart, and
it is just breaking over this. We had so many dreams for him, and
now we don't even know if he will ever reach them. It seems like
such a long shot from where we are at now.
The alien family lifestyle with autism
It's just so funny when we talk to other parents.
To most of them, our lives seem so alien. They are simply impressed
with all the "abnormal" things we have to do. This summer
was the first time I felt more qualified to give Michael his vaccines
than the nurses. "Just give me the needle" I thought to
myself. I have lost count of how many injections I have given him
- and this kid, who would need two people to hold him down for mere
Tylenol, takes these injections without much fan fare. We get excited
over every inch Michael grows, and every pound he puts on. We make
a celebration out of all the small accomplishments Nick does. We
are in constant awe of our sons.
It was Nicholas who cried when Michael went off
to school the first day. Their bond has no boundaries. I have walked
in their bedroom countless times to see them sleeping together.
They will crawl into each others bed at night and sleep next to
one another. Nicholas gets visibly upset if Michael cries. Nick
will imitate what Michael does, and Michael loves to play "ring
around the rosie" or chase with Nicholas. He kisses Nick all
the time. Theirs is the unspeakable bond of brotherhood.
Smelling the roses
We stayed indoors today and just relaxed after
our day yesterday. Nick was in a better mood, and we only left the
house to go for a romp in the neighbor's plastic pool! I am also
in a better mood today. Mike is usually able to cheer me up when
I get down, and yesterday was no exception. He is now able to speak
of autism in a more free manner, and it is not so "horrible"
A few months ago he would not even say the word
"autism", but now he will explain to people when Nick
acts in a funky way (like screaming like a banshee because of a
rotating fan) that he is autistic. He will mention in a movie or
tv show if a character seemed a little "odd" that they
could be autistic like Nick. In fact, one of his all time favorite
shows is MONK ... a show about a police detective who has major
sensory issues on top of an uncanny ability to notice the smallest
details. We have laughed ourselves silly over this show. We somehow
find ourselves able to relate to these sorts of characters and see
the humor in
Sometimes autism just sucks
This is just one of those evenings where I just
need to write. Sometimes autism just plain sucks. Soccer practice
was just such an event. Nicholas was happy for about 10 minutes
until the parents of about 15 kids showed up, and all the commotion
that brings. Even outdoors it is too much for him. He spent the
entire 65 minutes of practice screaming. I tried everything - his
cup, some snacks, his spinny toy, letting him out of the stroller,
letting him BACK in the stroller, holding him, bouncing him, finally
I had had enough and the last straw was strapping him in his carseat
and just shutting the doors. There is only so much screaming a person
It continued when we got home - he wanted nothing
to do with dinner, or anybody else. He just continued to scream.
I honestly felt like an outcast today among all the other moms on
the field. There they were, able to talk among themselves, their
children sat quietly and colored with each other, they were all
so "normal". Here I had strapped my child down in his
carseat because he could not contain himself. None of the other
moms would even come near us. Their kids were all playing with one
another so peacefully, mine could not stand anyone coming near him.
Another thing is SLEEP. This is something Nick
finds hard to do recently. He has always been such a good sleeper,
but recently he is horrible. He gets up frequently, and it takes
him hours to go to sleep. He was up last night at 10pm spinning
his shoes; in the dark. The thought of drugging him has crossed
my mind, I must say. He does not nap during the day, so I know he
is tired. He cannot ignore his obsessions and just sleep. I love
him to death, but days like these are very hard.
Seeing the world through Nick's eyes
Nick teaches us in many ways, he does communicate...we
just have to pay attention. He is not able to verbalize that he
missed daddy this weekend, but he SHOWED that he did by following
daddy around when he got home and "hugging" him while
he was on the couch. Mike was so touched that he called me over
to see... Nick had placed his little head on his dad's chest and
was just beaming. Mike was beaming as well. Nick had never "hugged"
A few minutes later Nick wanted to be tickled
by daddy so Nick took his hand and placed it near him while he would
curl up on the floor. Daddy tickled, Nick repeated. Yes, it is primitive,
but it is communication at its most basic level, we just have to
open our eyes. In some ways, Nick has taught us to take life slower...
to stop and notice the patterns on the floor, the feel of wet grass
on your bare feet (he walks funny with his legs near straight up
in the air with each step), to "smell the roses".
There is a scene in the movie Little Man
Tate where Fred is riding a horse (again, Fred is a character
with autistic traits) and he looks up and you see the world through
his eyes. What he sees is a wonderful light show with the sunlight
in the trees. That is how Nicholas will look at the sky...with the
same face and expression as Fred. Just for one day I would love
to get inside his head and "see" things differently.
These are excerpts from nicholasweger.blogspot.com
reprinted with the author's permission.
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