Special Needs Parenting - Superstar Miss O

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

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

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)  

Under my umbrella (Ella ella, eh eh eh)  Under my umbrella

XO Ajike