Mama’s First Guest Post

Dear Diary,

Finn has graciously offered to let me make my first guest post here and I’ve decided to take him up on it. While I know we can both agree that Finn tells the truth, and only the unadulterated truth, about everything, I thought maybe you’d like to hear from somebody else.

Hard to believe it’s been only about six weeks since the Invaders first showed up to tell us Finn is Awesome. At the same time as they’ve rushed by me in a blur they have also dragged on as the longest weeks I can remember. Once the diagnosis was official the Invaders started showing up for two hours a day, five days a week. Sometimes they come alone, sometimes in pairs or even packs. In addition to Meow and Kerplunk, who serve as Finn’s go-to Invaders, he also sees a behavior analyst, a speech pathologist, and an occupational therapist. The Invaders provide all of their services in-home, since the littles learn best in their own environment.

I’ll start with this disclaimer: this post is me unloading my thoughts. Some of it may seem a little bit self-indulgent, but I want to keep it as honest as possible. I’m not big into feelings, and definitely not into touchy-feelings, but this is an incredibly emotional ride and I’d be lying if I said it didn’t affect me. What I’m writing is an attempt to open the door a little into the head of a parent working through all of this stuff for the first time, not a request for sympathy – there’s no tragedy in what’s happening with Finn. Just an uphill climb with an amazing kid.

It’s hard to feel in your gut that your kid is different. Not just unique or quirky, but capital D Different. It changes the way you see your child even though you don’t want it to. It gives you a feeling of shame and guilt (which your head knows is ridiculous, but your heart says is justified), and the constant impulse to apologize for everything they do that’s a little off in public (and let’s be real – toddlers are weird little people, whether they’re Different or just toddlers). You wonder if you’re making it up in your head; you second guess yourself, your child, and the people around you who give you side-eye when your two year old plays with the same toy for an hour while every other two year old is knocking around the room like they’ve been given an intravenous Red Bull drip. You know that the people around you, close to you, have seen something different in your child, but nobody wants to be the person to say “Hey, I think something’s up with your kid…. he’s…. Different.” You feel them pull away in case it’s catching. In case it’s too much for them to deal with.

You feel isolated, whether you really are or you’re not. Sometimes you isolate yourself because it’s easier than explaining for the hundredth time that YES MY KID IS NOT LIKE YOURS, and nervously laughing off yet another remark that was probably just made in jest but feels like a needle being driven under your fingernail.

Once the professionals come and you have an answer there are so many roiling emotions that it’s hard to pinpoint how you really feel. There’s relief, from knowing you weren’t crazy; there’s fear, because what the hell happens now? There’s a period of mixed anger and mourning because no matter how well your child responds to their therapies they’re now always going to be Different, and your life is always going to be Different, and you realize that relating to other people in your surrounding circles just got a lot harder. And, more lasting, there’s a huge cloud of uncertainty that hangs above you like the rain clouds that hover over Eeyore.

So now here we are a month into this intensive program with all of these people in our lives and home making all of these changes, additions, and subtractions to how we live our lives. In some ways it’s more settled – I more or less know what to expect from sessions, and I know what to do to support the work they’re doing with him. In other ways it’s harder than it was – there are these cloudy, out of focus goals that are somewhere in the future and the path to reach them is partly laid, but how long it takes and whether we can pave the rest of it or not is just all rolled into the Great Unknown that hangs above us.

I’ll end this guest post, Diary, by giving you the abbreviated grownup version of Finn’s progress to this point. I hope to write to you more often, but that involves wrestling the iPad away from a surprisingly strong two year old.

The team that’s been assembled for Finn meshes well with his personality. In the last month he’s learned to trust them and that makes him more willing to work with them. When they first started coming Finn had no way to communicate specifics with us. He knew how to get his message across in general, but how frustrating must it be to be hungry and not be able to say “I want crackers, not a banana!” or even just “I’m hungry.”
In the weeks since the Invaders arrived Finn has begun to pick up functional sign language, use pointing effectively, and most importantly, how to use PECS. PECS is a system where the child chooses and exchanges a picture representation of what they want to receive the item or do the activity they want. The first stage typically takes several months for the child to master. Smartykins over here nailed it in under a week. He’s also using some initial consonants with purpose (/b/ for ball and /mo/ for more, for instance).

I could go on for pages about all this stuff, but I’ll spare you for now and save it for later.

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2 responses

  1. Emma,
    I’ve been flooded with flashbacks since you first wrote about Finn. I too, had a “Different child” who was looked at differently at the pool, or when she walked or when she was wearing “special shoes.” I was a young mother (just shy of 21) when I had this beautiful premature child who had feet touching the insides of her calves. At birth, she was whisked away with me saying, “What’s wrong with my baby,” and their answer: “don’t worry, we have a specialist coming right away.” I became an expert on club feet with what information was out there and fumbled my way through the first year with so much fear and hurt for my child, she came home with casts on both legs up to her hips. She had her first surgery on both feet at four months old. How can a four month child endure surgery? She’s going to die!

    My dad became very humorous with asked, “What happened to the baby?” “Her parachute didn’t open, my daughter threw her down a flight of stairs, etc.” I was infatuated with peoples feet, always looking to see if someone else had “the problem” and one day when Kellie was eight I found an adult in a pool with club feet. I KNEW he must have noticed Kellie’s feet because I assume, he knew HE was different and found someone else. I approached him and asked if we could discuss his disability as my daughter has the same thing and we had a wonderful conversation. He was never able to ride a bike because your balance is off when you have club feet. Kellie learned to ride a bike around 10 years old and was so proud and happy about this accomplishment.

    I’ve seen my child endure so much in her lifetime and still to this day wish I could take the pain away and make everything better, I can’t. What I can do (and did) is giver her love and instill encouragement to make it through the tough times. I advised her that when people say, “You don’t look disabled” to thank them which really throws them off. People are mean, there is no getting away from that, but you will protect your child and do everything possible to make sure he has a fulfilled life. Although my story is “different” than yours, I can embrace what you are going through and only let you know that you’re doing everything possible to give Finn a wonderful life and I know that everything is going to be OK. Your emotions are very normal and it’s OK to grieve, let it rain. The sun will always come out. I’m sure there are support groups you can join with other families having a child with the same disability and highly encourage you to seek them out. I have a beautiful daughter, she is strong and compassionate and love her to the moon and back. I’ve been truly blessed and you are too.

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