NUTSHELLS:
We met on the Internet and
started dating 9 years ago. He found out he was getting deployed so we got
married 6 months after starting dating. After 5 months training, 1-month break,
and 12 months boots on the ground, he came home from Iraq. We decided to have a
baby. We tried for one and got TWO. After carrying twins for 38 weeks and a
quick and easy C-Section, we had two beautiful babies: a handsome little boy
with brown hair and eyes, and a beautiful baby girl with red-hair and blue
eyes. To this day they are still the most gorgeous children on the planet! I
just knew that they would be special, that they were going to do something
great with their lives! Don’t all parents? My friend wants me to tell you what
was going through my mind as I held my babies. The first time: HOLY CRAP! These
are mine?? Aren’t they a little big for twins (8.05lbs and 6.5lbs)? I get to
take these things home? NOW WHAT??? After that first time, I was thinking,
“Look what I made…I grew these inside me,” and “How did they fit??” I never had
that crying moment. That “Oh I am the happiest person alive” moment. Nope, it
never happened. I think it was because of the morphine. J But I couldn’t wait to see what they would become…I just had to get
through the beginning of their lives first!
By 13 months I noticed they
were developing slower, verbally wise, than other children. Other children
seemed to be further along. They didn’t meet the age standard for words that
they should be able to speak. But, Birth to Three, a program in Texas, told me
they weren’t worried. Our son had sensory issues and needed extra stimulation,
like bouncing and rough housing. That’s all. And that he needed a little help
talking. So we worked on that until we moved to Maryland, just before the twins
turned three.
Right before the kids turned
3 years old, my husband came down on Recruiting Orders. When we arrived at our
new assignment, the children, who had been potty trained previously, all the
sudden regressed to needing diapers. Their speech was still pretty awful, even
for a toddler. I compared them to other children all the time and I just knew
something wasn't right with my wonderful children. I was worried. I was scared
about Autism. I had heard about how it was becoming more prevalent. It was
actually my worst fear for my children. What if they had it? What if they had
something else? What if they had intellectually debilitating issues??
We had them re-evaluated immediately. The re-evaluation process was long, difficult, and grueling for all parties involved. And afterwards, both my husband and I cried. My worst fears were about to be confirmed. Our children had done very poorly.
ATOM BOMBS:
The Autism Specialist said
that she was sure they (the twins) were autistic. And she even thought that
they were probably moderate to severe (which is not good.) Once the team left,
this is when my husband and I clung to each other and our children and just
cried. Our happy, little family was being torn upside down and inside out! I
knew something was wrong, but I didn’t expect it. Not both of our twins.
Especially our girl, who is more severe than her brother! It’s so much more
rare for girls! We were just devastated. My husband doesn’t cry much, but he
cried that day. It is heartbreaking finding out that you have children with
developmental issues. The future is never certain with things like that.
We were referred to the Kennedy
Krieger Institute: Center for Autism and Related Disorders at Johns Hopkins
University in Baltimore. It took about 8 months to get in. It was like being in
limbo. Just waiting and waiting. I would call to see if there were any
cancellations. There were none. We could have been given an appointment
somewhere else faster, but we decided that if we were going to do this, it was
going to be at the best center on the east coast. Finally, we got our
appointments. The daylong evaluation by the specialists at Kennedy Krieger
Institute was grueling. The tests, the waiting, the nausea, the anxiety, the
migraine that hit me on the 2 hour drive back home in Baltimore beltway rush
hour traffic, the screaming 3 year old that didn't understand. All I could
think of was our beautiful daughter. Her beautiful hair and smile, the one that
I had so many high hopes for in life, the one I was looking forward to bonding
with and one day talking about boys with, one day watching her get married and
have kids, but now she was diagnosed ‘autistic’. All my hopes and dreams for
her had turned to despair and agony. Then, I had to repeat the process the next
week with my son, who did a little better, but he got the same diagnosis.
My parents were in denial.
In fact, my dad still sometimes says there isn’t anything wrong with my kids,
and that they are just behind (he’s an Osteopathic Physician, so he has some
credentials). I wasn't in denial; I was crushed. I have special needs children.
I felt like a failure. I felt like it was my fault! Everything I wanted for
them, I didn’t think it would ever be possible now. In my eyes, they would
never become doctors, lawyers, engineers, singers, dancers, artists, play
organized sports, play a musical instrument…it was all gone. All my hopes and
dreams for my children had flown the coop. AND I DID EVERYTHING RIGHT during my
pregnancy. I carried two healthy babies to full term. I didn't do drugs, I
didn't smoke, I didn't drink, and yet, I was the one who carried defective
children. I was in mourning. I hated seeing people with normal children.
Especially when I knew they were smoking, drinking, and doing drugs while
pregnant, and yet they had completely normal children. I hated them for it.
SMALL VICTORIES:
While we were waiting on
Kennedy Krieger, the kids were enrolled in special education Pre-K so that they
could start receiving at least some services. They went full days 3 days a
week. At 4 years old they went 4 full days a week (half inclusion Pre-k and
half special ed.) Pre-K was full of discoveries for the kids. They really
needed the socialization. They weren’t good at being around other kids before
Pre-K. They wouldn’t look at you when you talked to them, it was hard to get
their attention, and they were really just in their own little worlds.
We began to see emerging
strengths for each of them. Therapists and specialists call them “splinter
skills”, or something that they are extremely good at or have a particular
talent in. And they were (and still are) so different! Our son started to show
a growing interest in numbers, while our daughter, who was originally very
introverted began to come out of her shell. She began to really love stories. She
even tells them to herself, using different voices for the different
characters. They also both were finally re-potty-trained.
In Kindergarten, they were
in separate regular classrooms. Our son was really gaining ground on his
numbers. One day I sat down with him with a bag of pennies and started a little
game. Pretty soon he knew his multiplications. We also found out that he could
add and subtract in his head. I would print off 2nd and 3rd grade math
worksheets for him to do just to keep him occupied. Our daughter began to draw,
and not just pictures, but stories. She would draw the whole story out and put
it in order. Sometimes it was one that we had read to her, and sometimes, they
came straight from her own imagination, which was showing to be a vast pool of
fantasy and fun.
When Kindergarten started,
our daughter was getting great reports. They began to read, and read well they
did! Their teachers were very impressed. But it wasn't always lollipops and gumdrops!
Our daughter's teacher was a witch. She was older and thought that because her
nephew was autistic she was an expert on my child. I really hated this teacher.
Then came parent teacher conferences. It was like being backhanded by the
teacher. The teacher didn't know what to do with our daughter. She wouldn't
come out of her imaginary world, just wandered around the classroom. The teacher
wanted to know what I was going to do about getting our daughter to do better
in school and when was I going to medicate her. I felt an overwhelming urge to hit that woman
as hard as I could in the face. I mean, who did she think she was?? I didn’t
punch her though, because I probably would not have stopped. I didn’t think my
husband could handle two autistic children, recruiting, AND a wife in prison
for assault. Multiple times I went to the principal and told them that I wanted
her switched out of that class. I also called an emergency IEP meeting.
(Individualized Education Plan, every student, gifted or special needs, has
one. An IEP tells the education goals for the fiscal year. For example, Jane
Doe will be able to write the alphabet legibly without help 80% of the time.
That’s a sample goal. They are tailored to every individual child’s needs.)
Finally, a Special Education
Teacher stepped in and got that all straightened out, although it was not
without pain, tears, anger, and lots of frustration.
I want all my readers who
have children to think of something, think of the last victory your child had.
Was the victory an ‘A’ on a spelling test? Was it cleaning his/her room without
being helped? Was it getting a high score on that video game that they love to
play? Did they make a friend at school? Did your daughter tell you that she
loved you when you said it to her? Some might say, "Well, those aren't
victories. Those are normal things that kids just do eventually! How is that a
victory?" Sadly with special needs children, these are HUGE victories.
I cried when our daughter
told me she loved me for the first time without prompting. Our kids are really
smart. In fact, our son is going to be evaluated for gifted class. My children
aren't "retarded" or mentally impaired, just Autistic. All these
terms come with a stigma. Retarded implies the child will forever be impaired
and need 24 our care for the rest of that child’s life. Mentally Impaired has a
very similar stigma. And unfortunately, sometimes Autism carries that same
weight, but it doesn’t have to. I am hear to tell that you don’t have to be
afraid. You don’t have to fall apart. Yes, have your pity party in the
beginning! Cry if you need to, I still do sometimes!!! But then dry your eyes,
put on your big girl panties, and get ready for a long ride. It does get bumpy!
And there will certainly be rain clouds, so bring that umbrella. But it doesn’t
have to be full of despair.
Our 6 year olds have
communication issues. They learn differently, and they have extreme social
difficulties. Our daughter is loud and my son likes to touch people. For
example, an older veteran walking with a cane was coming out of the PX. My
daughter says, "Why are you walking with that cane? Is it because you are
old?" Or my son, being he likes to touch; he may inappropriately touch a
woman’s breast. He doesn’t know the difference between touching daddy’s chest
vs. mommy’s chest. Or my favorite, when
we are in a grocery store and they have a breakdown, we get those "You’re
the worst parents ever!" look. I live in a constant state of mortification.
Going through my mind when this happens: “Oh my gosh, they probably think we
beat, molest, abuse our children, or that we are low life scum that does
inappropriate things in front of our kids, or are they going to call CPS and
tell them we are negligent?” (Which has happened before. Thank God we were absolved
of any wrong doing!)
I still feel like a failure,
almost everyday, in fact. But I am learning along with our kids. I am learning
that it’s not my fault. (I have my theories as to what is causing autism, but
that is such a long theory that it will have to wait!) Trust me, the problems
don’t stop with education and socialization. Discipline is difficult. Sometimes
the kids just don’t understand right from wrong. One thing that terrifies me to
my core: they can’t understand that some people are just bad. My kids have
never met a stranger. What if they meet the WRONG stranger? *shivers* What if
someone hurts or takes advantage of my babies??? I would most certainly end up
in prison! But that’s beside the point. How do I teach them these skills that most
kids get relatively easily? How do I teach them that people will hurt them
because some people are just evil? Our son is so sensitive. He doesn’t
understand why children are hurt by adults, why some go to bed hungry, why
everyone isn’t as blessed as we are. How do I teach him, well both of them,
that? Our daughter has very little compassion. She laughs when people get hurt.
She thinks it’s funny. How do I teach her that it is not? There are just so
many issues we face, and there are new ones everyday!
But our children are lovely.
They are sweet, loving, kind, and oh so smart. Trust me, Autism sucks. I won't
sugar coat it. But it makes all the smiles, the victories, the hugs, and the
love even more amazing. It makes you appreciate some of the smaller things just
a little more than the average parent. And it's not the end of the world; it's
a whole new world with some amazing possibilities.
