My friend Joann and I have talked about this several times
lately- the fact that parenting Jack is infinitely more difficult than parenting
Nathan. It doesn’t make intuitive
sense. Nathan is clearly way more
affected by autism than Jack, or to an outsider, it may seem that way. Honestly, I don’t think it’s so. I think Jack’s life is impacted severely by
his autism. As he gets older, it’s
getting harder and harder to watch.
The issues that Jack faces are considerable, but of course
when one looks at the fact that Nate cannot yet communicate well, that he is so
impacted every second of every day, and Jack is in mainstream first grade, it
may not seem that way.
I want to make it clear that I am extremely proud of my boy-
he was recently “dismissed” from his special needs reading group, which mean he
has caught up to his grade level- how huge is that? Especially for Jack. I talk about all of the “noise” that there
seems to be for Nate, how many distractions there are in his own little
head. The same is fully true for
Jack. When John and I went away for a
night last year it hit us just how quiet our hotel room was- that is because
both of the boys almost continuously hum.
It’s verbal stimming. Jack also does
quite a bit of physical stimming- jerky movements, still some flapping of his
arms, lots of jumping. I’ve grown so
used to it, that I forget how significant it is until we are out in
public. Do you ever wonder what your
child must be feeling? What compels them
to do this? I know they are seeking
input, but I often wonder what that experience is like.
Jack’s obsessions have driven me crazy for a long time. When he talks about something, he TALKS about
it- ALL THE TIME. 24/7, it never, never,
ever stops. He repeats the same things,
lines of text or quotes from movies about the subject over and over again and
then, since he is smart enough to know that you might tune him out, he requires
you to respond to him. He will repeat
the same thing in your face over and over and over until you respond. For a long time, it felt like John and I had
lost our bond, because when we finally got Jack to sleep each night, we fled to
separate corners of the house, really didn’t interact much at all. It’s taken a long time, and lots of
counseling and reflection for me to realize that we are running to opposite ends
of the house because we literally don’t want to hear ANYONE talk. Our ears are ringing. RINGING.
It is that intense, almost all of the time with Jack.
When someone new meets Jack, you can literally watch the progression. It starts with “wow, he really knows a lot
about blank, he must be really smart”.
Then a few minutes in, there is the amused smile. Fast forward a few more minutes and the smile
is frozen on the person’s face. This is
not to say that they don’t like Jack, but that they realize he is not going to
stop. And he doesn’t. I can redirect him a million times; it has
little to no effect. It is really,
really hard. And the thing is- he is not
being naughty. He is rarely
naughty. How do you scold a child for
something that they cannot control?
This impacts Jack’s life and well-being greatly. He is happy in his world, I think. But the more and more I watch him, the more
it breaks my heart. How must this
feel? To feel literally incapable of
thinking about anything else? To be this
compelled to talk about the same thing, use the same words, over and over, to
never feel satisfied or done? If his
words are this intense, how intense are his thoughts? I don’t think I could tolerate living that
way.
And he is, Jack is living with this, and is in mainstream
first grade. It causes many issues for
him. He has a full-time aide to help
keep him on task; this includes his walk to and from the bus. He struggles to complete his work and quite
often doesn’t.
And socially? He has
been invited to two birthday parties all year.
One party was for a little boy he met as Cisco Center last summer, one
for an old friend of mine’s daughter. So, in fact he has been invited to no
birthday parties by kids at school. He
told me for weeks that one little boy was his best friend at school, but then
in a moment of conversation, when he was really sharing with me he said that
the boy told him that he sometimes likes him, but that he won’t invite him to
his birthday. Broke my heart. He does not recognize these social “snubs”
for what they are, but I do. And I want
to help him, but how? I work full-time-
I wish I could be in the classroom volunteering and keeping an eye on how
things are going from a social perspective, but I can’t. I wish I could be that mom that has time for
play dates on a regular basis, but I’m not.
Most of my friends at this point are in the special needs community,
which makes perfect sense considering our situation, but those are the main
people who we socialize with on the weekends.
I mean, Nate has a birthday party to go to at least once or twice a
month, because ALL of the families at his school are special needs families and
we all invite all the kids- because we know what it’s like not to be invited. It’s because Jack is with typical kids when
he is in fact, not typical, that he struggles in this way. He may not feel the impact now, but at some
point, I am sure he will.
So even though Jack is functioning, with assistance, in mainstream
school, his struggles are many and significant.
I sometimes get caught up in worrying about Nate and lose sight of this,
so I guess I am giving myself a bit of a wake-up call here. It is so hard to strike a balance with these
two kiddos with such different, yet substantial issues.
