Things are not always how we perceive.
One year, when John was teaching 3rd grade, he
dressed up as Frankenstein for Halloween.
His costume was awesome.
 |
I couldn't find the Frankenstein picture, so her is his Halloween
Costume from this year, with the kids as minions |
Unfortunately, Halloween was the first day of school for a
large group of African refugees.
One of whom was placed in John’s class.
Many in this group had never even seen indoor plumbing.
I’m not sure who’s
bright idea it was to start these kids on Halloween day, but they did, and this
poor little girl, who spoke no English, entered her first day
of school in America to meet her new teacher, Frankenstein, and her classmates,
an assortment of devils, fairies, and other gory and fantastical creatures.
Not long into the day’s festivities
a student approached John and said, “Mr. Kelly, the new girl is coloring her
face with green marker.”
I can’t even begin to imagine what that little girl thought
of her new environment.
With what
she knew of the situation, coloring her face with marker made perfect sense.
By 18 months, my girls were both early talkers and exceptional
communicators. When Isaac was 18
months old, I started to notice some differences. Isaac had very few words. The discrepancy was disturbing, and when I voiced my concern
to anyone from friends and family to my pediatrician they all chalked it up to
the fact that he was a boy and had big sisters to talk for him (which they
did!). By the time he was three I
really began to worry. He still
had very few words and wasn’t stringing them together to make sentences. He became frustrated very easily and
spent about 70% of the day tantruming and fighting with me. Needless to say, I was not enjoying
parenting and I felt horribly guilty.
One word from me at the store could send him into a fit that would force
me to leave the store. I felt
captive in my home, never knowing which Isaac I would get when we went out. Sometimes he was compliant,
affectionate, and charming, other times he was angry, defiant, and lashed out
at me violently. Often times I
would return from what was supposed to be a short trip to the grocery store in
tears and exhausted having bought nothing.
I was doing all of the stuff the experts say to do, but none
of it was working, so I concluded I must be doing it wrong. I was failing and it was dispiriting
and publicly humiliating. People
would point at us and whisper or not whisper and just say what a horrible boy I
had. Others would try to
discipline Isaac for me. I heard,
“Just give him to me for a weekend, I’ll straighten him out for you.” Or, “Are you sure he doesn't have a
chemical imbalance?” I'd receive looks of disapproval when I lost my temper and when I was patient. Nothing I did was right to anyone looking on.
I felt like a complete failure. As he was judged by others, my heart broke for Isaac.
One day the girls were talking about ice cream and Isaac
flew into a rage, screaming and yelling at them. He kept shouting, “I NOT SCREAMING, I NOT SCREAMING!” and a
light turned on in my head. I
thought, "He isn't HEARING them". The problem was solved and I was ready for a course of action.
I took him to our pediatrician and recounted the “ice cream
vs. I scream” exchange I had witnessed.
At this particular appointment Isaac threw a fit and the doctor finally
got to see first hand what I had been trying to explain for so long. His tantrum was big enough to draw the
front desk receptionists back to the exam room to see if everything was okay. He bit me and drew blood. He kicked and screamed and, defeated, I
began to cry. The doctor gave me a recommendation for a hearing test
and an ENT for Isaac along with a lot of sympathy and compassion.
I went to the hearing test very confident that Isaac’s
diagnosis would be hearing loss due to multiple ear infections in infancy. I actually felt relieved. My elementary school was a magnet
school for the deaf, I have deaf cousins, and a friend with deaf children. I
had seen first hand happy, healthy, confident children and adults who were
deaf. It would be a challenge, but we could handle it.
So when his hearing test came back completely normal, I have
to admit, I was devastated. I know
that sounds weird, but I was. This
put the blame for his behaviors back on my parenting. I WAS failing.
It WAS my fault. I
had no answers. No course of
action.
When my pediatrician received the results from the ENT, she proposed that a speech and language pathologist test Isaac.
That experience is a whole blog post all in itself. I’ll just say that we spent more time
trying to pry Isaac off the door handle of the pathologist’s office while he
screamed, “I’M DONE! TAKE ME HOME MOMMY!” than actually testing Isaac. I also cried at those appointments.
His final diagnosis:
Developmental Delay with a significant delay in receptive language. Many of his symptoms aligned with a
disorder called “Auditory Processing Disorder” which, very simply put, is like
dyslexia for the ears. (Testing for this disorder isn't done until a child is 7-8 years old)
Nothing had changed and everything had changed. I realized that the reality of Isaac’s world was very
different than I had perceived. Isaac
still threw colossal fits, but I stopped thinking that I was doing everything wrong
and that Isaac was doing everything wrong. I finally understood that Isaac spent most of his time
guessing what was being communicated to him, which left him feeling frustrated
and defensive. And because
of this he had learned bad habits and negative coping skills. In a sense, I stopped "coloring my face green with a marker".
I stopped feeling enraged at his tantrums and instead felt
compassion.
(
Most of the time at least) Which was a
huge relief for both of us. I believe our love for each other deepened during this time and I finally was able to get to know Isaac.
He still was put on time out, tantrums weren’t tolerated, but with a change in perception, the rage and despair I felt was gone.
This solved half of my problem.
To all outsiders he looked like a normal, very naughty and
spoiled little boy. And I felt
just like this woman:
I wanted to pin
a sign on Isaac saying, “I have a delay.
Sometimes it makes me feel mad, frustrated, and scared, so I act angry
to protect myself. I’m working on
it. Be patient with me. Love me anyway.”
Discussing this with another mom who has children with
special needs, she advised me, “The most important people in his world now know what Isaac needs. The next battle is learning how to let
go of the people that don't want to understand.”
So I’m working on letting go.
That being said...
I can’t tell you how many times a simple encouraging smile from a stranger
watching me struggle has saved me (and probably Isaac too.)
Yesterday I went to a funeral. The funeral was for a friend’s husband who passed away unexpectedly. Too soon. He was only 48. His youngest child is 12 (like Audrey). The last speaker was his very close friend and he was very honest. At one point he broke down a little and said, “I don’t know what I’m going to do tomorrow. S@*^%! I just don’t know how to do this.” 
Today is Kate’s birthday. In so many ways she is the light of my life. (As are my other kids too.) She is my rainbow baby, my sunshine after the rain. She is full of empathy, spunk and determination. My children’s birthdays are days of joyful reflection and gratitude for me. 
