General Update:

I apologize for the longer pause between posts.

 Last week, I had a difficult conversation with my son's physical therapist. My son has been in weekly physical therapy for a year now and he's not walking independently. When he entered PT, his 'diagnosis' (such as it was) was that he had a gross motor delay caused by a combination of medical issues during his first year along with torso weakness due to using his chest and abdominal muscles to hyperextend his chest wall to compensate for his lung damage. 

That diagnosis still makes sense - but there is more going on with my son's neuromuscular system than can be explained by 'medical issues + breathing support'.

• His vision issues stem from having overly low muscle tone in his eyes. 
• Spawn's balance and eye-tracking (known as the vestibular system) is wonky.  He has a hard time recovering from being bounced or spun.  
• He has speech issues that are caused by low muscle tone in his mouth.  
• While using his walking sticks on the step he starts on, he can jump down to a lower step while slowing his descent by supporting his weight on his arms with his shoulders elevated and hyperextended behind him without any signs of discomfort.  Here's another way to visualize it: put your arms up in a "V for victory" position.  Now, now imagine grabbing two sticks with your elbows slightly bent, then jumping down three feet so that your arms are still supporting your weight while your arms are now fully extended at about 45૦ behind your head.  Doing that would rip my deltoids, lats and trapezius muscles free of my body; my son seems to enjoy it.    
• Spawn can still hyperextend and twist his legs like a newborn can - in spite of the fact he's been doing lots of 90% or more weight-bearing standing, squatting and walking.   We've seen him hold his ankles behind his ears while laying down and suck on his toes by bending his knees and hips while in his car seat - when he's almost three.
• When he walks, his knees can move laterally while his torso/legs are moving forward and back. without any sign of discomfort.
• His ankles and feet roll freely in any direction imaginable while walking.  Getting ankle-and-foot orthotics  (AFOs) was a game-changer because he didn't have to focus all his energy on getting his feet to flatten into the right place.

The other differences have been popping up one by one over the last year - and I can't make them fit into the 'medical issues + breathing support" mold.

I've mentioned before that I have mild hypertonic (spastic) cerebral palsy that mainly affects my legs.  My twin sister has a mild form of the opposite form - hypotonic cerebral palsy.  My son's body doesn't move like mine at all - but I have mental flashbacks of my twin when he gets moving.

So...I sucked up my nervousness and asked his PT point-blank if this list of symptoms was a sign that Spawn might have hypotonic CP - while crying - because saying the entire list out loud really drove home that this_was_not_ only_in_my_head no matter how much I secretly hoped she'd laugh and tell me I was imagining things or over-reacting.

With the standard caveat that she's not a medical doctor so she can't give diagnoses, she gently said that the therapy she's doing with Spawn is the type of work she'd expect to do with a child with hypotonic cerebral palsy.   Also, that Spawn's making great progress (which he really is) and that diagnoses are just diagnoses - because awesomeness transcends medical conditions.  I agree with her whole-heartedly - and I've been sad and relieved ever since.

 Since I tend to shut down negative emotions by working, I've been purposely refraining from keeping busy by blogging or other hobbies that keep me distracted.  So..I've felt sad and cried when I needed to.

I wouldn't change a single thing about my son - not one thing.  I know that his prognosis is great.  He'll eventually be able to walk independently along with climbing steps without support.  I had hoped, though, that my son would have a different life experience than I did.  One where he could pick up new skills without needing intensive physical therapy as a toddler and preschooler.   Even now, I can't say that I wanted him to have a better life experience  because my cerebral palsy has taught me patience, perseverance, given me insight into people with motor disabilities and let me meet awesome people over the years. 

My son loves his PT now - and she hung in there with him in his first four months of "Be gone, Daughter of Satan!" phase.  Today, he wanted to give her a high five, a fist-bump, and an "ET Phone Home!" (that's where you tap extended index fingers together) which he's been refusing everyone except me and my husband for a few weeks.

I feel sad, too, because I'm so tired of having to fight to get services for my son.  The current model of at-home infant special education services is described as "Therapists-as-coaches; parents as instructors".  IOW, physical therapists or speech therapists or whoever comes to the kid's house for an hour or so once a week and give ideas and examples of activities that the parent and kid can do to work on deficiencies for the upcoming week. 

I hope this model works well for kids at risk for delays or with mild delays due to parents who are inexperienced with small children - because it fucking sucks for kids with more severe delays.   Case-in-point: Spawn's first month of speech therapy at home consisted of his speech-and-language pathologist explaining to me that I should use one or two word phrases with Spawn over and over again.   So when Spawn plays by putting toys into and out of boxes, I would say "In. In. In. Out. Out. Out" and give praise for any attempts at speech.

While the therapist explained this - and demonstrated it repeatedly - I fought the urge to say "So the word of the day shouldn't be "inflammable"?  Damn, I thought repeating Shakespearean sonnets as rapidly as I could was ideal for increasing toddler speech!  Sorry, Spawn; no more Moby Dick before bedtime."

I know the programs don't mean to do this - but having such stupidly pat approaches to in-home development lead me to feel guilty.  After all, if the solutions to Spawn's issues were SO obvious, why hadn't I figured them out myself?  Why hadn't I talked to him more - or repeated single word phrases ad nauseum - or started him on a standing-walking regimen at 8 months?  If I had done enough, would Spawn be walking and talking fluently by now?

The real answer: no.  I'm an incessant talker - but I also have been mimicking conversations with Spawn including pauses for his response since he was in the NICU.  I exposed him to insane amounts of language by narrating my day (Spawn, Mama is going to put Spawn in the high chair.  Now, I'm moving you to where you can see me cook!  I'm cutting onions.  You are playing with your tubes.  I am cooking onions.  You are playing with the lids...this goes on for hours), reading books aloud, reciting poems, singing and talking to him and in front of him.   We moved Spawn around like a baby.  We cuddled him, gave him tummy time, bounced him, and encouraged him to do new things.

We did the right things - and so did Spawn.  It simply takes longer for him to work out the details than it does other kids because his muscles have the tone of limp spaghetti rather than taffy.

And that's why I'm relieved along with sad.   The clinic where he gets outpatient speech and physical therapy (which ascribes to the model of "Therapist as therapist; parents can help if they want") has regular visits from medical interns and pediatric residents.  Since I'm verbose, Spawn's PT has me describe Spawn's medical history to the young doctors (who I refer to as baby baby doctors).   Over the last year, his history has changed from "lots about the NICU/infancy with a bit of pediatric rehab" to "fast overview of NICU/infancy + scads of pediatric rehab + 5 other things that have slowed us up but aren't covered in the thing we're here in pediatric rehab for" - which is as disjointed and convoluted as it sounds.  A diagnosis of mild hypotonic CP means his history is still rather convoluted - but there's an overarching connection of why these things are happening to this child.

The best bit: I know this is much more upsetting for me than Spawn.  I know this because I grew up with hypertonic CP.  In discussion with other people who were born with disabilities, you often don't need to mourn what you've never had.    I've never thought, "Wow, my life would be so much better if I had normal range of motion in my hips" as I've watched cheerleaders or dancers perform.  I have thought "That's insane!  How can they do that without their leg falling off?"  - and that seems to be Spawn's response to toddlers who can run.

Originally, I had this shoved at the top of a blog post on "Joyfully At Home" - but that felt a bit crazy - so I've separated the posts.  I hope to have that post online in the next few days.

Thanks for listening.