Saturday, July 19, 2014

Patch and Mae and the Fear I Might Have Had

Since Mae was diagnosed last October I've often thought about how much more intimidating the idea of pregnancy and adding to our family would have been if she'd had a diagnosis before Patrick was born.  If we'd known then how little changes could be overwhelming, it would have seemed almost unthinkable to do something as life changing as adding another person to our family.

The first visit in the hospital to meet her brother
After all, a change of scenery can leave us all reeling (I was up at 4-something this morning dealing with someone having a very, very, very hard time), and doing something like coming home from the grocery store without a warning like "We're going home from the grocery store. Right now.  We're driving home to our house and getting out of the car and going inside." can cause an hour of tears, despite the fact that the grocery store is always the last thing on our to do list when we're out running errands so it's not exactly unexpected (in my mind at least).

Logically, if little changes can have such an impact, you'd think that fitting another baby into our not-so-big house would be earth shattering.

Except that it wasn't.  Maybe it helped that we weren't in a position for life to be all that different when Patch arrived. Since I'd been sick and in the hospital at 36 weeks, all our extra hands and extra help had been poured into that time (when it was very much needed) and I found myself, post c-section, at home by myself with a four year old, a two year old and a brand new baby the day after I got home from the hospital.  Paul was back at school day and night and my parents, who'd spent weeks helping out, really had to get back to California after an already longer-than-expected trip.

So we did the only thing we could do.  We hit the ground running.

Patch split his time between a bassinet I set up behind the baby gate in the kitchen and dozing in the Moby Wrap while we went about days that looked more or less like the days that had come before he arrived.

And honestly now I can't imagine it any other way.  Sometimes as I watch Patch and Mae playing together I can't imagine a more constant, consistent type of "therapy."

It started around the time that Patch learned to crawl.  At that point he decided that Maggie was pretty much the most spectacular person the planet.  He followed her around the house all day long.  For the first few months she evaded him.  She climbed up on top of the toy chest where he couldn't reach her... and he found that he had extra motivation to learn to stand.

Still, unconditional, unwavering love is hard to resist and Mae was no exception.

Once he learned to walk it was pretty much all over.  She'd given up on getting away from him at some point in the previous five months and they'd become partners in crime.  I'd come into the play room and discover that she'd handed him an apple sauce and was watching proudly while he smeared it on the windows.

Over the course of the last few days Mae has gradually been adjusting to being in California.  It hasn't been a horrible transition, but it hasn't been easy either.  She's waking up early, upset with the time change, and is absolutely adamant that she doesn't want to leave the house to go outside and play (which is where we spend most of our time here).

Mae peering over the baby gate at Patch in his
Yesterday I took her on a walk, which she was okay with, and then tried to ease into play time on the front porch by going straight up and trying to convince her that it was really super fun outside with the little pools and toys.  She headed off around the corner and sat down by herself.  And that was when Patch ran after her.  He found her in tears around the corner before anyone else could get to her and began to yell "uh-oh, uh-oh!" in a panicked voice, staying with her until she was happily back inside (after she grudgingly stayed out to eat a popsicle) before going off to play.

And that was only the beginning of Patch looking out for his big sister.  Later in the day we went to the store.  As I leaned over to reach the dairy free yogurt Patch started to sound the alarm.  "Uh-oh!  Uh-oh!  Uh-oh!"  I looked up to see him pointing at his sister (who was in my cart) and turned to see that she'd leaned as far as she could out of the cart and had managed to reach a display of gluten filled rolls and was frantically trying to open them before I noticed.  Patch had saved the day.

Later in the afternoon everyone was relaxing before dinner.  Mae had been coloring in the dining room, but Nani and I both heard when her little feet pitter pattered into the kitchen to pillage the refrigerator.  We both realized at the same time that the lock that Grumpa had made apparently wasn't on it at that moment.  Patch went charging into the kitchen yelling his little alarm and while Nani secured the fridge he ran across the room to a baby gate that wasn't up (the door was closed and Mae hadn't bothered it) and hauled it across the room to Nani to insist that she put it up immediately.  He then stood and watched while she went to work before returning to the living room, content.

Perhaps the best part, however, is that the concern is mutual.  If Patch starts to cry there's a good chance Mae will come over and touch his cheek.  If I can't get him to stop, tears are likely to start to roll down her own cheeks as she points at him, upset that he's upset, demonstrating that she very much does possess empathy, especially when it comes to her little brother.

A couple of weeks ago Mae was walking across the room when she stopped and stared at Patch. Then she walked over and threw her arms around him and hugged him tightly.  I watched, making sure she didn't squish him in her overzealous cuddle.  Then she turned and walked over to the wall, a funny look on her face.  She pulled a chair over and climbed up and stared at the picture, a small smile on her lips.  She sighed and stared at one particular picture before climbing back down and going play.  And the picture?  It was this one:

At the end of a follow up evaluation with the local university a few weeks ago I called Sadie and Patch into the room so the evaluator could see the three of them together.  Patch came charging over.  He immediately sat down as close to his sister as he could get and started coloring on the same piece of paper, right next to her.  She didn't bat an eye and we watched as they took turns with the crayons, side by side.

And so as we begin to think about preparing to welcome another baby boy, I find myself not all that worried about how this particular change will effect the rhythm of life within our four walls.  I'm sure we'll all have our moments, just as we would if things were staying exactly as they are... but I've also seen how our girl can rise to the challenge of major changes and how they've helped her grow in ways that I could never have imagined if I'd been looking at our situation through the lens of fear that can sometimes surround even the smallest changes in our routine.

After all, if there's one thing we've learned it's that the greatest joys I've witnessed for our little group have been the result of letting our hearts stretch to contain the challenges and happiness that this call to love brings... and it sometimes seems that the challenges and joy so often come hand in hand when they show up at our door!


  1. I'm really laughing at Patch's "Uh oh, Uh oh" when Maggie is doing something naughty. He's ratting her out! How funny is that?! What will really be something, is when he's about 4 or 5, and she starts ratting HIM out, then the tables will be turned. :-)
    I know change is especially hard for Maggie, but it seems to be very good for her, and maybe as she matures it won't be as bad. Maybe if she started to see herself as Dora the Explorer, always looking into new things and having adventures, she might look forward to changes instead of resisting them.
    She's still pretty little, and as she grows up she might be able to become more flexible. I think it takes a sense that she doesn't have to control her outside environment as much as gain control of her inner environment. And even many neurotypical people are challenged by that task!
    In any event, I hope you are having a really restful and fun time.
    God bless. ~ Bonnie

  2. Cami,
    I have high funtioning autism, severely Devolpmently delayed and sensory processing disorder and I have a 7 month old son.By grace of God and my hardworking mother I am functioning adult and happiy married. I am still quirky like your daughter and have my issues.
    Do you worry patch or your next son will have autism?
    My son is already showing signs of doing things late and having babynet evaulate him.
    I also can tell he will probably have sensory issues like I do since he is scared of death of all noises and anything loud.
    I am worried about having more children and if they will have my disabilites. I know its in Gods hands.
    You are a beautiful woman and a good mother.
    I appaulse and send you a big mom hug from SC.

  3. Hi! I don't worry too much, maybe because, while Mae definitely has her challenges she's so joyful that the idea of having another little one like her isn't too overwhelming.

    I worried a lot about Patch when he was around 16 months old because he didn't seem to be hitting milestones in the giant questionnaire that his doctor's office sent us. But then right around 18 months it seemed like everything sped up and he started doing things early. It seems like there's so much range in those early months, although I can totally understand the worries too!

    I do think all of our kids have some sensory oddities and I know I definitely do. Actually when I look at Mae's diagnosis on the sensory processing issues they all seem to be more severe areas that I always thought I was just "quirky" about (like my joints don't feel pain, which was really good in karate, but which makes Mae a sensory seeker when it comes to all things proprioceptive).

    And Sadie was so, so scared of noises when she was little. That's a tough one! She would sob if anyone clapped in church (and clapping happened a lot). It's definitely improved, but she's also the first one to put her hands over her ears if things get loud.

    I'm not sure if I have any really helpful advice, but I can definitely relate to the worrying when I was first going through the checklist. I know I've definitely felt better knowing that if someone does need extra help we'll be very likely to catch it super early since everyone is kind of on the look out for it and that if you're little one does face the same challenges you've faced he'll be getting the very best care from the start by having such early interventions like OT, which can make such a difference!

    God Bless!

  4. This post is so beautiful. The story about Mae crying with Patch just melted my heart to puddles.
    Thank you for blessing the world by sharing this.


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