a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Thursday, April 24, 2014

Still Figuring Her Out

Lately, thoughts bounce inside my head from one day to the next. Thinking, sorting, pondering. The emotions tug. I'm not clear on many things and though that's all I am clear about. I'm talking motherhood. Raising our firstborn gives me absolute meaning in this world but our parenting highs walks alongside great challenge, frustration, heartache, change, wonder, and all the things in between. I'm almost 7 years into motherhood now, which seems like I should have an idea of what I'm doing. Truth is, I'm kind of clueless. Raising an angel with such complexities makes every day so very different than the previous one. Many days are hard. Few are easy. None are a breeze. The easy days are when Oia's best behaviors shine through and I think to myself, yeah, I got this. why am I so stressed? But then it never fails. A new day brings an all new experience and I'm tossed back into reality and proven wrong real quick. A fierce love for the child(ren) my body was once swollen with is my only constant.
Here's what I'm getting at. Earlier this month, we took Oia to a routine developmental pediatric appointment. Two days prior we had just met with a local autism institute (per the advice of Oia's neurologist) to discuss resources and options that might be available to help us better understand and in turn handle many of Oia's behavioral issues. Her behavorial issues have developed into what can feel like the weight of the world at times and have even begun to hinder the way our family functions. That's a little hard for me to say. Think man-to-man as opposed to zone. Think take-out instead of dining in. Perhaps you get the idea. Oia lives life in bold, and she is so full of life but only capable of managing one emotion or feeling at a time. Rob and I questioned Oia's neurologist and developmental pediatrician about the possibility of Oia having autism, however they conclude it is unlikely. She does seem to dance along the spectrum with some of her peculiar and quirky behaviors but an excerpt from her developmental peds report suggests a diagnosis of a slightly different kind...

That excerpt reads:
Oia is a 6 year old girl with CP, seizure disorder, and ADHD. She continues to struggle with behavioral problems including hyperactivity, impulsivity, and inattention. She also demomstrates some features of obsessive compulsive disorder including anxiety, inflexibility, and facial tics...

OCD. It makes sense. But damn. The schizencephaly. The cerebral palsy. The seizure disorder. The ADHD. The apraxia. The blah blah blah. And now the OCD. It's enough. It's so hard to look at my baby's beautiful face - with the perfectly round, sunkissed nose and silky skin whose neck I can still nestle my face perfectly into - and believe that this black and white print belongs to her. But on those hard days when her impulsivity and bursts of anger break through, I'm reminded that these words do indeed describe portions of her. How do I navigate the black and white? Somewhere in the middle of "fixing" her and accepting her just as she is is where I believe lives the greatest balancing act of all. Allowing her to just be means that all her issues surface in a multitude of hard-to-handle behaviors that are not our daughter. It's tough. Challenges and behaviors still remain, even with interventions (therapies, medications, etc), as only the degree or severity of them changes.

From the same report per her last developmental pediatric appointment states:
"Would consider referral to behavorial psychologist. Also consider respite services to alleviate family stress." Yeah.

Somedays I think our family is thick as thieves and bound by the toughest of loves. Rob and I have to be to manage and manage we do. We deal. We put out tiny behavioral fires as they occur and do our best to avoid situations that may create them. We do our best to love one another and be patient even after we've tapped into all our reserves before the day is over. We often feel strained. Weekends are especially hard with a kiddo who doesn't know how to deal with idle time well. We often like to slow the pace on the weekends and not feel as though something must be planned but it's not applicable. Oia must be busy, and must be entertained. Oia is full throttle all the time. She has always had an incessant need. It seems now that is in part of OCD (maybe?) and of course, ADHD. Meltdowns happen. Sometimes they are without explaination. Oia's tricky behaviors are not new to us but as Oia has grown these challenges we face as her parents feel heavier, and more prominent. It's completely appropriate to pick up an infant or toddler when ones behavior is less than desirable but it's not as appropriate to always scoop up your almost 7 year old when behaviors plummet and become unacceptable or somewhat disruptive in a social setting, ie. a restaurant. Oia is tall and although skinny, still heavy to carry and so we have outgrown (literally) that option. Conversing and reasoning with a 7 year old about expectations and behaviors is age-appropriate but when cognitive delays and other issues effect the capacity to reason then the door is pushed wide open into a situation that feels much larger than the parents themselves. Our goal is to see less of these behaviors and situations and more of Oia. We are working towards that path but currently it feels as though we are just grabbing at straws while still doing the very best we can. We do have some things in the works.

The black and white is complex. Oia, however, and the amazing soul she is, is so simple. Still. And that's the real tug on my heart. She's a damn good kid whose challenging days try to overshadow her good. But I will not let them. She's selfless and sweet and funny. Helpfulness is her happiness. Sisterhood is her joy. Family is her heart. And ask anyone who knows her best - her smile is as wide as her face. I never would have guessed that being a Mom was going to be this hard. I can only imagine that being Oia isn't exactly easy either. I must always see it through her eyes.

I do believe in phases of parenthood. I also believe this to be one of those phases, however long it may be. We'll get through it, or get a better grip on it. We will find ways to better help her, to better channel her positives. Either way, we'll still count our blessings one by one and be grateful our girl has grit. Because boy does she ever. Here lately, I often recall my grandma saying, "God love her little heart". And I do. We all do. More than Oia will ever know. That's why my heart aches some days.

Your thoughts, suggestions, good vibes, and prayers are always appreciated.


  1. my son is 27 in two days. He has adhd, no developmental issues outside of that that we are aware of. He has huge anxiety issues that didn't seem out of the typical range until he was about 22. We-my son and I, have recently been discussing how adhd and autism seem to intersect like cogs on a wheel. I asked him if he would have been better served with more of an autism treatment focused way of doing things- he is not sure- but he is sure that dealing with the anxiety part- especially when he was younger- adhd related or not- would have been more helpful to him NOW. If dealing with the anxiety-say of not keeping up with classmates or not being understood - curbs the ocd---win all around. -Sally

  2. My Hannah went through the exact same thing at the exact same age as Oia . Hannah is now 10 and those outbursts have become less and less I sometimes think autism but I feel she has real strong case of OCD and big time sensory issues. When she was Oia age they brought in a behavior specialist in school because she would bite and hit her aides when she was not HEARD it really always comes down to speech problems I'm sure you see more outbursts when it comes to her not able to express herself and her feelings :( . I think we all do our best to get through these times and get on to the better ones and I promise they will get better I know for us they have gotten better as Hannah's speech has. Stay strong and keep giving her all your best :) and on a lighter note there is a new show called Black Box and the little girls name is Esme' thought you would like that :)

  3. Mo, this sounds hard. Like a lot of parenting a special needs child, it's hard to find people out there who understand what you are going through right now. I do think respite would be helpful, and a psychologist is a good idea. I know it was for us (different issues, but at times it seemed so hopeless). I didn't want to acknowledge we needed a psychologist. It was hands-down one of the best decisions of my life as as Elena's parent.

  4. Ah. I'm praying for you guys. I know that I'm having a time myself with learning new things about Hanna and it. is. hard. There's been some discoveries that make me a little uneasy, and I haven't even been able to blog about them yet.
    I don't know what to do sometimes, but carry on and be mom. You and Rob are an amazing team. Oia is an amazing little girl. Esme just adds extra strength to the team. Together you guys are unstoppable.

  5. Sending prayers as requested. Glad she has you guys, as you are lovely. Maybe see OCD as ways she manages anxiety caused by her other issues, and explore therapeutic approaches that give you more options to address behavior? Maybe it isn't a label for her but a way to identify coping mechanisms she uses? XO