I spent a long time ignoring the signs; ignoring the little
things, that pointed that my son might not be meeting the average developmental
marks. Sometimes, I would agonize over it for days at a time, until I would eventually
decide that the nagging little voice in my head, well, it was WRONG.
I would watch him through the day, playing-- chatting to himself
in his own little world,-- perfectly fine until I would try to participate in
whatever he was doing. "Why won't he
let me interact with him," I would wonder to myself. "Why won't he just look at me and listen to
what I say?"
"Well, kids like
to be independent. He's just an independent kid," I would silently
decide. And then I would watch him. And then I would try to teach him. And then
I would research. And then I would worry.
Each time he learned a new word, I would get so excited.
"See," I would tell myself,
"you were overreacting! He's fine!
In fact, he's perfect." I
would tell everyone how wonderful he was doing. And yet, that little voice in
my head still would not stop.
Weeks after learning new things, he would drop the skills
and words he had proudly shared with me before. "Why isn't he saying that word anymore," I would end up
asking myself. Again, I would refuse to accept the possibilities. "He's just learning new ones, that's
all," I would suggest to myself. I would console myself with the idea
that he must just be investing too much energy into other things, and not
enough into talking.
And then I would watch him, and I would listen, and I would
try to teach him. Again, and again, and again. The excuses in my head were
always the same: he's just independent, he's just too busy with other things,
he's just fine.
Periodically I would reach the point where I could consider the
possibilities, and I would make the mistake of mentioning my worries to
someone. Nearly every time, I would get a response telling me that I was over
reacting. "Boys learn these things slower than girls", I would be
told. Or "Well, all kids are
different." A few times I was even told, "Maybe it's your parenting;
are you talking to him enough?"
I'm sure they were trying to help; I'm sure they were
telling me what they thought I wanted to hear. But if I could go back in time,
I just might tell them to stop it.
I would leave each conversation with a feeling of shame --or
more so, embarrassment-- embarrassment that I would be wanting to hear that someone thought my son wasn't perfect. And
then I would once again smoother the feelings that had been so hard for me to
even consider. I would make a pact with myself to put those feelings aside and
never, ever, point out a weakness in my precious boy again.
And then I would wait. And I would watch. And I would worry.
He would learn more skills, and he would forget, and he
would learn again, and he would forget again. I became quite adept at finding
excuses as to why I shouldn't be worrying about it. Others would validate those
excuses, and so I continued to use them. But yet, the nagging refused to leave.
It was until his baby sister was born, that I really started
to voice my concerns again. I would see vast differences in how quickly she was
learning things. It was hard to deny that he had not learned the little social
nuances at the rate she was. "But
remember, boys learn slower than girls," I would remind myself.
When I would timidly voice my worries, I would hear the
well-known "I don't think you have anything to worry about", the
off-handed "I think autism is extremely over-diagnosed", or simply, "I
think he's fine."
And so, I worried. I taught some more. I researched. I
wondered, and I cried.
At one point, I was positive that his lack of talking had to
be because of his chronic ear infections. But when we put tubes in his ears, we
were told he had above average hearing. I found myself internally asking,
"Then why doesn't my son listen? Why
can't he talk clearly? How is it possible, that this is not the reason he doesn't communicate?"
As he continued to grow, he became more frustrated, talked
less, and began slamming his head into walls again. "I thought we outgrew this phase," I would whisper to myself, "everyone said he would stop this,
with time."
And then the biting started. And it got worse, and worse,
and worse. The first time he bit someone else's child, I nearly cried, right
then and there. "I must not be
teaching him the words for how he feels...," I would explain to myself. "I need to teach him what he is
feeling; then he will stop this."
I turned into a broken record. "Connor, are you feeling
angry? This is what angry feels like. Connor, can you say angry?"
"Sad, Connor.
Are you sad? It's ok to feel sad. Can you say sad?"
I waited. I listened. I watched. I taught. I researched. And
I worried some more. But still, it did not get better.
He became obsessed with little routines. It came on so
quickly that I would have no idea what triggered his melt downs. I would beg
him to tell me what was wrong, but he was never able to verbalize his needs. I
started asking him to show me what he needed, because I knew no other way to
understand. After weeks of these melt downs, he finally began nudging me in the
directions that he wanted me to go or turn after I asked a few times. I would
show him one thing after another, waiting for the anxiety in his face to
decrease. Then I would repeat my question, "Connor, is this what you need?
Do you want a drink?" When the root of his problems was discovered, I
would attempt to explain the proper way to get what he needed. Despite my
efforts, nothing would change.
It would be little things, like forgetting to lean against
the counter in a specific place, that would make him freak out. It made no
sense to me, and despite the little voice in my head telling me these things weren't normal, I
continued to wait, and to watch, and to worry.
Then one day, it happened: Evelynn began doing things that
Connor had learned only months before. She began pointing. She began waving. I
knew she was already trying to communicate with me. The question haunted me: "How is it possible that my almost-three
year old just recently started pointing,
when my 10 month old already mastered it so quickly?"
My heart broke. I had to accept that Connor was not learning
at a normal rate, he was not talking at a normal rate, and his social skills
were not where they should be at his age.
I could not deny it anymore. But, a feeling of peace
overcame me in my moment of despair. It would be ok, I just had to stop denying
that there was a problem.
I ventured to say my concerns out loud, but I was afraid.
Instead, I asked around about autism signs. Each time I would hear a symptom that
I could see in Connor, my anxiety would increase. "I need to do something," I would frantically tell myself. "I
need to know how to help my baby."
I hesitated to explain the reason for my strange questions, because
I was terrified that I would once again be told that I was being paranoid; that
I was seeing signs that weren't really there. But-- for the first time ever--
that didn't happen.
I was encouraged to talk to his pediatrician. I was
encouraged to trust my gut. And I was encouraged to hold on, and to pray.
I called the office and left a message for his doctor,
explaining my concerns. I was afraid I would receive a response that he was
fine, but once again, I did not. I was told we were being referred to a
developmental pediatrician.
As the appointment day drew closer, I stressed, I prayed,
and I worried. I wanted desperately to have answers to my questions, and to
know what to do to help our sweet little boy. I began to be brave enough to
tell people that Connor was going to be evaluated. But talking about it didn't
bring me the answers I needed. I knew only time would bring that.
When the day of his appointment arrived, we were nervous, we
were hopeful, and we were ready.
--------------------------------------------------------------------------------------------------------------------
We left the office that day, starting a journey that may not
be completed for many years. It starts with a developmental delay diagnosis, and another appointment in six
months to reassess and work from there.
We were told that he definitely has signs that are common in
autism. We were also told that he is learning things that sometimes kids with
autism don't learn. This means that we could possibly be looking at a diagnosis
later down the road, or he could overcome his learning delays and it could be
something else entirely. Only time will tell us what are the reasons for his
delays. Either way, he is behind, and
we need to get him the help he is now eligible for.
Until then, we will be hoping, praying, living, and loving
-- just as we were before.
***this was written for a personal journal, but I decided
that now is the time to explain to our friends and family what our little guy
has been dealing with. I decided that rather than explaining one by one, I
would share the thoughts and feelings that came from my heart.
