Once in a while, I know the voice of God. It’s not that I
hear it. I just know it. Like it has been written on the seat of my soul, on
the walls of my heart.
I know, that sounds insane. But before you judge, or
criticize, or think I’m loony, just hear me out.
A couple weeks ago, I finally got our school to give my 5th
grader an Individualized Education Plan (IEP). This is extremely significant in
the life of our family. Our four kids all have special needs, but they are the
kind of needs that are “invisible.” If people looked at a snapshot of our
family, you would see four adorable, blond, smiling faces, all who look “normal.”
But they all have significant challenges, and their appearances are deceiving.
My kiddos struggle. A lot. With so many things that come
easily and naturally to other children their ages. My children have a host of
diagnoses, including Tourette Syndrome, ADHD, Sensory Processing Disorder, mood
disorders, anxiety, and learning disabilities. Even though the kids have these
official diagnoses, it is often difficult for me to obtain services for them
because they look “normal.” Year after year, our school has said the kids do not
need additional services at school because they are functioning well enough,
and that their problems must be “home” issues, and parenting issues.
Year after year, I’ve received emails and calls from my
children’s teachers, asking for help with my kids. What have we tried at home
that is successful? What ideas do I have to help the kids at school? What
should the teacher do? I’ve done my best to help guide and educate the teachers
about my kids. I’ve racked my brain, trying to come up with more ways to help
my kids succeed, both at home and school. Life shouldn’t be this hard for
people who are so little.
Despite my best efforts, my kids still struggled at school.
Teachers would contact me, at their wits’ end, not knowing how to proceed with
my kids. So I would request a meeting with the team at school. We would get to
the meeting, and I would express my concerns about my children’s growing
troubles. The team would tell me that my child was fine. My child was acting
fine, learning fine, doing fine. Implying that I was somehow overreacting,
somehow wrong. That my child’s troubles were only at home. That despite the
teachers repeatedly contacting me about their concerns, my child was fine and
did not need additional services at school.
This message that I was somehow to blame for my children’s
disabilities was a tough pill to swallow. Since the day each of my four
preemies was born, I have been determined to help them be as happy and healthy
as possible. I have spent zillions of hours with the kids at every kind of
therapy you can imagine, listening and learning from our amazing therapists. I
have been to countless doctors, begging for answers, begging for help. I have
had to convince my husband that treatments not covered by insurance are vital
to our children’s well-being, and we must find a way to pay for them out of
pocket. I have done therapy homework with the kids, day after day. I have had
to make the impossible decision about whether to use medication to help my
children. I have driven them all over tarnation, looking for answers, searching
for help. As all of our friends pile their kids into minivans to go to soccer
or basketball, I load my littles in the van to go to more therapies, more
doctors.
Don’t get me wrong, we do find time for fun and relaxation.
But having a family with special needs is darn hard work. You’re on call ALL.
THE. TIME. There is never ever a millisecond where you can disengage from the
fact that your kid might need you. Even when they are at school, or with
grandparents, or the once-in-a-while-miraculous-babysitter, you never know when
you’ll get the call that your kid needs you. That your kid can’t handle life at
that moment, and all they need is you. And you drop everything, day or night,
and run to them. Because that’s your sole purpose in life- to make sure your
babies live well, are happy, are loved and healthy.
When your entire existence revolves around guiding your
children who have special needs through life, to have people tell you that your
kids’ problems are because of you…that’s soul-shattering. You know it’s not
true, but the seed of doubt has been planted. When people tell you that your
kids just need a spanking, they just need tougher discipline, you worry that maybe
they’re right. Maybe if you had been tougher on them all along, the kids wouldn’t
have so many struggles now. You know that’s not true, but you worry just the
same. When people tell you you’re crazy for driving an hour to see a special
eye doctor and spending a fortune on glasses to help with visual processing
disorder, a tiny voice in your head wonders if they’re right. You wonder if all
the money you’ve spent on alternative interventions was a waste. You know it’s
not true, but you doubt yourself, just a little. When your school says your
children's problems are because of their home life, you wonder what you could be
doing differently. You wonder why all your exhaustive efforts to do any and
everything to help your little darlings isn’t working. All the reward charts,
and therapy homework, and therapy visits, and hours in the car driving to
appointments, and special glasses, and medication, and massages, and
supplements, and…what if everyone is right, and the only problem your child has
is you?
What if it’s all your fault?
Since my 5th grade boy was in Kindergarten,
teachers have been asking me for help with him. He’s such a sweet boy, he’s got
such a huge heart, he makes friends every single place we go, he’s kind and
compassionate and sensitive. But he wiggles, he doesn’t pay attention, he can’t
get organized, he doesn’t understand math, on and on goes the list of my boy’s
alleged shortcomings. For six years, I’ve tried to work with my son’s teachers
to help them help him. Each year, I would ask for a meeting when the teacher
said he/she was at her wit’s end and didn’t know what else to do for my boy.
Each year, I would sit at a meeting with up to fifteen school staff, who would
tell me that my son didn’t qualify for more services than his 504 Plan would
allow, and that he was fine.
My 5th grade boy is my third child. My twins, who
are now freshmen in high school, have similar diagnoses and issues in school as
my 5th grader. I had gone through the same run-around with my twins
as they went through elementary and middle school. It wasn’t until we spent our
own money for a private evaluation, hired a behavior consultant fluent in the
diagnoses of Tourette Syndrome and anxiety, consulted a lawyer, and hired an
advocate that I was able to educate the school well enough on my children’s
needs that they agreed my kids needed more support.
So with my 5th grader, this ain’t my first rodeo.
Been here, done this. Twice before. Imagine how many times I’ve been given the
message that I’m not a good enough parent. From other people in my life, but
also from our school. Imagine the determination and courage it takes to fight
that message when it comes at you over and over for so many years. Imagine how
hard it is to hold on to your strength and know that you are doing everything
under the sun to help your children. Imagine how hard it is to fight that
little voice of doubt that the world has planted, saying it’s my fault my
children struggle.
I went to my 5th grader’s IEP meeting a couple
weeks ago. Once again, I sat around a table with 10 school team members. Once
again, I felt outnumbered. Once again, I worried my son wouldn’t qualify for the
help he so desperately needs at school. Once again, I worried I might dissolve
in a puddle of tears in front of all these people.
The team went through my son’s evaluations. They talked about
test scores, performance in the classroom, his deficits. The doctor we hired to
do a private evaluation talked about her insight into my son. Finally, after an
intense hour, the team said my son qualifies for an IEP. After this
announcement, there was silence as everyone looked down at their notes and
computers. I waved my fist in the air and joyfully announced, “Hurray!”
My response may have been a little silly, but this jubilant
moment that I’ve been fighting so hard for, for six years, deserved some
recognition. Finally, my boy will get the help he’s been needing. Finally, he
will have his needs better met at school. I truly, maybe naively, believe that
our school does the best it can for its students. I admire and respect every
teacher my children have had, and I know they work hard every day to help my
kids. It’s just difficult for the world to know what to do when your kiddos
have “invisible” special needs. But just because the needs are invisible, doesn’t
mean they’re nonexistent.
I left my son’s IEP meeting and drove around, frantically running
errands before the bus delivered my darlings home from school. I pondered the
meeting. I reran the test scores in my head. I thought about the comments
teachers and the social worker had made. I thought about what the director of
Special Ed had said about what label my son qualified under for his IEP. I
silently whispered a blessing of thanks to each member of the team who is
helping my boy. I was grateful to our advocate for her patient help with all of
my children. I was grateful to the doctor who spoke to the team about my son’s
disabilities. I was grateful to all of them.
That’s when it happened, when I knew the voice of God. You
can call it whatever you like- intuition, the voice of my soul, it doesn’t
matter. It was like someone wrote on the inside of my heart: “YOU did this. YOU
did this. It is because of YOU that your little boy got help today. YOU did
this.”
I am proud to say this had been one IEP meeting where I had
held it together and had not become a sobbing, hysterical mess. But when that
message bamboozled its way into my consciousness, I lost it. I burst into
tears. I sat in my car and wept. I wept with gratitude for that message, I
cried with the relief that comes with knowing- truly believing- you have made a
difference in your child’s life. For one moment, I accepted the foreign feeling
of being proud of something I have done for my kids.
I realized I am quick to notice other people’s contributions
to my children’s lives, but I rarely truly believe that I am doing a good job at
being their Mama. I am so thankful for each person who helps my children. I am
in awe of our therapists and doctors and teachers. I think they do amazing work
with our kids, and we wouldn’t be in the place we are if it weren’t for all
those people. But I never take time to pat myself on the back and believe that my children are as happy
and healthy as they are in large part to me. I try to find the good in others,
to make sure they know how much I love and appreciate them, but I don’t do the
same for myself. So to have the knowledge nestled in my soul that the reason my
son got an IEP was because I kept
pushing, year after year, never giving up no matter how many times I had to sit
in a lonely, intimidating, overwhelming meeting, no matter how many times I had
to be subtly blamed for my child’s problems, no matter how many people think I’m
crazy…the message that this success was because of me was profound.
As parents of kids with special needs, we are often quick to
thank the gifted people who help our children. It is much more difficult to
realize that we need to take credit too. It’s very hard to sit in a quiet
moment and say to yourself, “Great job! You are rocking this parenting thing!” and
believe it. We need to remember our
children wouldn’t have access to those gifted therapists and doctors if it
weren’t for us. Our children wouldn’t know love and acceptance if it weren’t
for us. Am I a perfect parent? Absolutely not. But am I doing the best I can,
all the time, no matter what the day brings us? Absolutely. We were given
special children, and we need to make sure we give ourselves time to
acknowledge and appreciate the work we tirelessly, endlessly, lovingly do to
help our children be happy and healthy.
Take a moment. Take credit. You’re rockin’ this parenting
thing! It’s because of YOU that your child is doing so well today.
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