by: Ajike Akande
For sometime on this here blog, I have been touching on what is
going on with Miss O and G-Dog, without really getting into the nitty
gritty. I just haven’t felt like I
could or should totally “go there” but I think it’s about time that I start
talking about and naming my girls’ challenges. I recently started following Diary of a Mom, a blog written by a mom with two awesome girls, one of whom is
autistic. Sometimes I find the
Diary mom way too perfect.
She never complains about the challenges of raising a child with special
needs but focuses on how she manages the challenges. She seemingly advocates effortlessly for her daughter and
celebrates her beautifully. She’s
also a fabulous phone photographer and captures her ridiculously beautiful
daughters perfectly. A little bit,
I hate her.
The point is, though, her daily stories help me see my little
monkeys in a different way. Her
posts make me feel less frustrated and more loving. They make me want to do better as a mom to kids with
challenges. And for reasons not
clear to me right now, her blog makes me feel as though I have a right to take
up some space in the corner of the blogosphere occupied by parents of kids with
special needs.
This won’t be my last post about raising kiddos with special
needs, but it’s not what I plan to write about all the time. I also need to be clear that all
children, regardless of their needs, are totally frustrating and stress
inducing (and also awesome) so just because some of my children have special
needs does not mean I won’t complain about how annoying they all can be. If it makes you feel any better, I am
100% sure that they will (do?) complain about me and Wife just as much. I should also say that I’m not a parent
who feels like our children’s challenges are a blessing. The children
are a true blessing; their challenges are not. You won’t hear me saying that I wouldn’t change anything
about them, ‘cuz I would. I would
take away the part of their brain that makes a seam in their socks feel like a
needle. I would take away the part
of them that makes surprises no fun at all. I would take away the part that makes it hard for them to
persevere when they are trying to explain what they want or what they think. And while that absence of those things
would make parenting them easier, I wouldn’t take away the tough stuff for me,
I would do it for them. Our Miss O
is the happiest person you’ll ever meet but there are parts of every single day
that are excruciating for her.
Nobody wants that for their child.
G-Dog has to push through a whole lot of worries which make her so angry
and so defiant, to find her happy.
I feel for her and wish it were different.
To write about both girls and their special needs, would take a
really long time, so I’ll start with Miss O who is having the hardest time
these days.
Almost two years ago, Miss O went through a developmental and
cognitive assessment as well as genetic testing. In the end, we were told that her genetics were beautiful
(thank you Mom and Dad and Sperm Donor Guy), that her results landed on the
diagnostic cusp of Autism Spectrum Disorder (ASD) and that she will likely have
a learning disability based on early cognitive testing. In regards to an ASD diagnosis, we were
told that girls are often diagnosed later than boys and that we may find that
as she gets older and the social demands increase, she will meet the diagnostic
criteria for ASD. Watch and see. When they told us about her results in
the cognitive tests, we all agreed that it was too soon to really know anything
about any learning difficulties.
It’s a little unfair to test what has definitely not been taught. Let the child go to school before we
decide she has trouble learning!
But, of course, parents know their kids. Before her third birthday she had received physical,
occupational and speech therapy.
Being the superstar that she is, she took that therapy and told us all
where to go when she reached every goal we set within the time we had hoped,
but we still had this feeling that our superstar daughter wasn’t like other
kids. With a built in comparison
in her twin sister, the differences were hard to ignore.
After being told that she had the characteristics of a child with
autism except that she was too social and too interested in sharing her world
with those around her, we learned about ways that we could support her. We confirmed that she has Sensory
Processing Disorder (SPD), learned about issues of sleep and autism and
starting using picture schedules and social stories to help her manage daily
routines and transitions as well as new outings and experiences better. We found an amazing school that offers an
integrated program with 20% of the class having ASD, communication disorders or
other developmental issues. (G-Dog has joined her sister at Yes I Can and we truly believe
that both girls are getting a wonderful program that meets their needs.) We
carried on as though Miss O had a confirmed ASD diagnosis, because we truly
felt that that was what was coming.
Now, almost two years after Miss O’s initial assessment, we will
be heading back to the team of psychologists, therapists and nurses to repeat
the assessments. We are starting
to see significant regression and loss of skills in Miss O and she is having
greater difficultly getting through the day. We are seeing our smart, funny child with excellent language
skills, who expresses herself well, struggle to communicate. We are seeing our kind and
compassionate child become overwhelmed and behave inappropriately towards
others. Miss O needs more support
and we need guidance and an actual diagnosis to ensure that she gets it.
Knowing that the assessment will take place in the next couple of
months, I have said to close friends and Wife, that I feel as though we are on the
verge of receiving bad news. I
don’t know for sure what this new assessment will reveal but I know in my heart
that our awesome, superstar Miss O experiences this world a bit differently
and that can be really hard for her.
And while I think the news will be “bad”, like all news, it won’t be a
big deal for long. She’ll be the
same kid, that fills and breaks my heart every day, but we will, and most
importantly, she will have more information about how to turn down the
excruciating and turn up the joy.
I will definitely share more as we learn more about Miss O. Before signing off, I have to share
this: One of the things that we have discovered about Miss O, is that nothing
calms her hurting heart like YouTube videos, specifically Tyler Ward’s acoustic
version of Rihanna’s song Umbrella.
After an epic (sorry neighbours) meltdown last Sunday evening we watched
the Umbrella video 12 times in a row!
In. A. Row. It was the only
thing that would calm her down. It
was truly remarkable.
So these days, when her calm, and her joy go missing, she finds them in
this video. I actually wrote Tyler
Ward a letter thanking him! He
probably won’t respond because, ah, weird mom, but I had to thank him. He totally saved Sunday!
Just in case you have misplaced your calm or joy, or you love a
good acoustic cover of a pop song (they’re soooo great), here’s the video:
Oh and here are the lyrics to the song that Miss O, after
screaming for 20 minutes, listened to 12 times while cuddling with me with her head
on my chest. I may have cried
listening to the lyrics and soaked the dear child’s head. Just read the lyrics, you would cry too (if it happened to you)!
You had my heart, and we'll never be worlds apart
Maybe in magazines, but you'll still be my star
Baby 'cause in the dark, you can't see shiny cars
And that's when you need me there
With you, I'll always share
Maybe in magazines, but you'll still be my star
Baby 'cause in the dark, you can't see shiny cars
And that's when you need me there
With you, I'll always share
Because when the sun shines, we'll shine together
Told you I'll be here forever
Said I'll always be your friend
Took an oath, I'ma stick it out to the end
Told you I'll be here forever
Said I'll always be your friend
Took an oath, I'ma stick it out to the end
Now that it's raining more than ever
Know that we'll still have each other
You can stand under my umbrella
You can stand under my umbrella (Ella ella, eh eh eh)
Know that we'll still have each other
You can stand under my umbrella
You can stand under my umbrella (Ella ella, eh eh eh)
Under my umbrella (Ella ella, eh eh eh) Under my umbrella
XO Ajike
