On de River in Egypt and Associated Guilt

Denial flows rampant through the pediatric stroke community.

There's plain crazy denial-- a facebook friend being told by her facebook friend that she should stop advocating for pediatric stroke awareness because babies don't have strokes.

There's legalistic ass-covering denial, which, fortunately, my family has not been privy too.

There's intending-to-be-supportive denial, "your kid doesn't belong in the three-year old program, there's nothing wrong with him."*

And then there is the regular, old, not seeing what is in front of you denial.  We've been there.  Sometimes we are still there.

Knee-walking purple-haired rock star
on Halloween at 15 months.

When other CHASA parents learn that Aster did not start  SoonerStart (the Oklahoma early intervention program [more on that on another post]) until after he was two, they pity me, assuming that, as with so many other pediatric stroke survivors, we didn't know about Aster's stroke until his developmental delays were so pronounced that even his pediatrician couldn't deny it any longer.

Except that I knew about his stroke when he was twenty-some weeks along, and knew that the brain had re-organized following the bleed before thirty weeks.  His doctor (a family doctor, we don't have a pediatrician here) and my obstetrician both knew about it before he was born.   But he was born good-sized, wailing and peeing, and so we went back to worrying about if we would ever sleep again, as parents of a newborn and a two-year-old do.

When Aster was six months old, the nurse at the doctor's office asked about unclenching his fist, and it occurred to me that he didn't, but we didn't do anything other than note it.  At 9 months, he was army crawling all over, but not using one side, and we alerted the doctor that something was wrong.  He recommended we get physical therapy, but I understood him to suggest that it probably didn't have anything to do with the in utero fluid in his ventricles. Physical therapy was helpful in getting him to kneel and at physical therapy we realized that he didn't sit, use his right hand or crawl.  He graduated from physical therapy 6 weeks later, suddenly one of the best kneelers around.
At thirteen months he started knee walking.  He didn't walk on his feet until 18 months, in the midst of a second short round of physical therapy.
We decided to see the neurologist somewhere around 22 months, but because of doctor business protocols, had to wait to get an appointment to see the local family doctor before they would schedule an appointment with the pediatric neurologist, and it was right after his second birthday when we actually visited a pediatric neurologist.
Despite all the reading and preparation, her words still shocked us.  Since we described hemiplegic cerebral palsy to her exactly (and even suggested we knew when he had had a stroke), she thought we knew that term.  We didn't.  Nor did we know that cerebral palsy made Aster an automatic qualifier for SoonerStart, even though I had read the SoonerStart notices in the library every Saturday when we went to pick out books.
Early Intervention was for crack babies.  Cerebral Palsy was something entirely different.**  De Nile is de river in Egypt.

Once enrolled in the SoonerStart program, I still had to stumble across the CHASA webpage to find out much of anything, including that there were many parent-pediatrician combinations in the world just as clueless as we were.  I'll write some other time about fixing vs adapting, about a few of the types of associated guilt, and about how hard it is to "coordinate care" for a happy healthy child*** but the take home message for today is that support is available for parents of kids who have even mild hemiplegia and strokes.  If you are inclined, please wear purple sometime this month and let somebody know that kids have strokes and can have strokes and survive well.

*A lot of the CHASA moms find this one of the toughest forms of denial to deal with.  When it comes from insurance or the bureaucracy, one can fight it, but when it comes from family and friends who genuinely mean to be reassuring that your child will be "okay" it can feel demoralizing, as if you must be a hypochondriac or helicopter parent for seeking therapy and specialists for something as minor as the ability to unbutton one's pants.

**And, in my case, I already had a close adult friend with c.p. who certainly didn't fit any wheel-chair bound lower IQ stereotypes, so I should have had no excuse for having them.

***Yes, I am aware that it is much more extreme for parents of children who are also unwell and that many of these issues come up when caring for aging parents, kids of all sorts of needs, and sometimes even self.