I am parenting a child with special needs.
I have been parenting her for almost ten years and I am just
now coming to terms with what that means for her and for our family. (When I
say “I” in this post, I’m not implying that I’m doing it alone – I have the
greatest partner I could ask for in this journey. This post is simply my side
of the experience.)
Addison is the most loving, kind, smart, funny, creative
soul I have ever known. She also faces more challenges than most kids her age. She
is impulsive and hyper, scattered and disorganized, and her behavior at home
and school is a constant challenge. We knew early on that she was an active
child – even in utero she rolled and kicked constantly and once she could roll over,
she never stopped moving again. She was diagnosed with ADHD at age 3 ½ before
starting her first year of preschool. We went through all of the non-medicated
options – elimination diet, essential oils, herbal supplements, sticker charts…
We. Tried. EVERYTHING. Eventually, we went through the process of starting her
on medication, but we had to wait almost nine months before we made it to the top
of the waiting list for an appointment. I don’t even know how to quantify the
number of conversations with medical professionals that I have had about
Addison. She has been diagnosed with ADHD, anxiety, disruptive mood disorder, potential
early onset bipolar, and a few others that I can’t even remember at this point.
We went through medication after medication and side effect after side effect. It
wasn’t until she was about 8 that we finally found a combination of meds that
seemed to work for her for a while. Unfortunately, we have discovered that
while a particular medication may work for a while it can suddenly become
ineffective and then we start the process all over again. She is currently
taking a long-acting ADHD med with a booster at lunchtime. She takes another
mood controller with her morning meds. At night she takes a hefty dose of an
antidepressant that helps her sleep and an anxiety med as well. We easily spend
$300-$400 each month on her medications because insurance doesn’t cover them
fully. She sees a psychiatrist and a counselor as often as we can afford –
because again, insurance doesn’t cover it beyond 8 visits, which means she can
only be seen twice a month and that sets us back another $350 at least. Unfortunately,
meds and money are overwhelming yet pale in comparison to trying to figure out
how to be the best parent possible for this beautiful girl.
A typical day in our house starts out with Addison getting
up for breakfast and getting her pills right away. On a good day, she gets
dressed and ready-ish with constant reminders and guidance. On bad days there are
screaming matches, doors slamming, things being thrown or knocked over and when
we get out the door we are lucky if she is dressed and has her backpack. I can’t
count the number of times we have gotten in the car with her hair a total rat’s
nest, teeth unbrushed, lunch left on the counter, and the drive to daycare
filled with arguments and crying. On a good day at school, she gets work done
and plays with her friends. On a bad day, she is rolling on the floor, hitting
or kicking other kids, fidgeting with everything she can get her hands on, out
of her seat, distracting others. On the really bad days, I get a call from the
office or her teacher. She is in 3rd grade and has received 17
referrals this year. 10 were for minor classroom infractions – out of her seat,
talking, etc. The other 7 were for more serious offenses - hitting other
students or saying grossly inappropriate things. She has served weeks’ worth of
“community service” at school – cleaning up the lunchroom, picking up trash, scrubbing
scuff marks off the floor in the hallways. After school, on a good day, she
comes home, puts her things away and either goes upstairs to play or heads
outside. She gets along with her brother and listens to Derek and I. On bad
days, it’s very much like our bad mornings – arguing, lying, stealing,
destroying things, saying awful things to me. She has stolen more money from us
than we can accurately count, has destroyed countless make-up items of mine,
gone through our drawers or my purse to find things she wants. She fights with her
brother, argues with us, hoards food, and a whole host of other issues that I
can’t even list. On a good night, she takes her meds and gets sleepy right on schedule
and she sleeps through the night. On a bad night, she is up all night, getting
into the pantry (not anymore, because padlock), hunting down any technology
that she can get her hands on, cutting holes in clothes, sheets, and cords, or
drawing on furniture, carpet, doors. We very rarely have a day that is “good” all
the way through.
Even with all that ^, it never really occurred to me exactly
how different our parenting experience has been with Addison compared to with
friends who have kids of the similar age and even compared to her brother. It
seems like the older she gets the larger the gap is between her and her peers.
This makes sense because kids with ADHD are typically 30% developmentally delayed
compared to peers their age. This means we technically have two 7-year-olds
instead of a seven-year-old and an (almost) ten-year-old. We have always known
she was immature, and we have always known that she had ADHD. We have tried
everything we could think of – incentives, points, rewards, grounding, yelling,
ignoring, taking away toys and electronics, etc. etc. and had zero luck in
changing her behavior.
I have the greatest support from friends and family, and I
am so thankful for that. I cannot imagine how much harder this experience would
have been without them. However, regardless of how much time others spend with
my daughter, they don’t see the whole spectrum of behavior that we see day to day,
minute to minute. They don’t live in the trenches. They get breaks. We don’t. There
has only ever been one other person that I have talked to that I felt really “got”
it. She was the parent of one of my sweetest students. At conferences, her
parents and I got to talking and discovered that she exhibited a lot of the same
behaviors as Addison to the same extent and with the same frequency (as in all
the time). It was such a relief to talk to someone who was in the same place as
I am/was as a parent. I didn’t know until that point how badly I needed to know
others who struggle with parenting a child with ADHD. It seems that the older
she gets and the more her disability becomes apparent, the more isolated I feel
as a mama.
For a long time (the last six years or so), I thought that I
could just parent her the way I knew how to parent and that eventually she
would just magically grow and meet my expectations. I absolutely knew that ADHD
was impacting our lives and Addison’s education, but I never dug into the
research about what ADHD is and what the implications really are for her. Recently
I had the opportunity to listen to my therapist explain the ins and outs of ADHD
to Derek and I and it was a game changer for me. I have finally come to terms
with the fact that my child has an intellectual disability. There is an actual,
measurable difference between her brain and the “neuro-typical” brains of most
of her peers. There are chemicals that aren’t doing their job and there is a
delay in the growth and maturity of the prefrontal cortex, the part of the
brain that helps us analyze consequences, plan, organize, and do all of the
things that are required to be successful in school. I have spent the past few
weeks digging into texts and websites and podcasts about ADHD and parenting
kids with disabilities. If she had been born with a disability that we could
SEE, we wouldn’t even question doing the research and the hard work to learn
about it, dig into what it really means, and change our lifestyle to meet her
needs. But because she was born beautiful and witty with a great vocabulary and
for all intents and purposes, seemed “normal” (Ew. I don’t like that word,
because none of us are normal but hopefully you understand what I mean) we kept
trying to force her to fit OUR lifestyle and OUR needs. She has almost no executive
function ability (planning, organizing, anticipating, changing, etc.) and her
anxiety causes her to stress out so much that she can’t focus for the rest of
the day because her nerves are on edge. There is no way that she CAN meet those
needs unless we teach her how. Slowly. One skill at a time.
Right now, we are working on getting ready in the morning by
using a checklist. She can’t shower on her own because she gets out of the
shower without rinsing her hair. She doesn’t brush her teeth unless we stand
behind her and supervise. Her room is a DISASTER every moment of every day. She
doesn’t wipe properly and has to be reminded and supervised to wash her hands
after using the bathroom. She would walk around with her hair in tangled knots
every day if we didn’t coach her on how to brush it.
I don’t know what I’m doing. I feel inadequate and unprepared
for a role that is so much more daunting than I expected as a parent. I’m
trying to learn – to educate myself and change some of the ingrained habits and
expectations that I didn’t realize I had about what it means to be a mom and
what my expectations should really be for my
child. The hardest part is that every time I think I have figured something
out, something else changes or falls apart and I’m back at square one. This job
is harder than anything else I have ever done and is far more important than anything
I have ever done. She must be able to go out into the world 9 years from now
and thrive – she has to take care of herself and her responsibilities without a
constant parental presence. What we do in the next nine years will either help or
hurt her as she moves into adulthood. I really, really want to help her. I just
need to learn how.
This is the baby girl who made me a mama. She is my miracle
after years of being told we wouldn’t be able to have kids. She was the only
solace when I lost a baby the year before we had Cohen. I was a mess on the
bathroom floor and my two-year-old came and comforted me. She loved on me when
I needed it the most. Now I need to love on her when she needs it most. <3 o:p="">
No comments:
Post a Comment