What’s in a label?

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It’s been a while. I’ve been trying to process our current situation and just haven’t had the energy to write about it. It’s not just that. I also don’t really know how I feel about it… so how do I write about something like that? But, I’m getting the urge now that I have to write it out. Maybe in writing this I will discover how I feel.

I’m not sure when Eric and I started seriously considering this, but in the past little while, we starting thinking a lot about PDD (otherwise known as pervasive developmental disorder, or the autism scale) and whether or not it was possible that Maddy might have it. At first it was kind of a fleeting thought, one of us would mention it and the other would say “Ya, I’ve thought that too,” and then we would both shrug it off and carry on with what we were doing. We figured that our therapists might one day mention this possibility to us.

We then had two tough days with Maddy (the days were tough, not Maddy’s behaviour). We had the chance to observe her in a group setting, and then on a play date with a handsome little guy who is six weeks older. Everything our gut had been telling us for a little while became so evident in these settings. Delays that we already knew Maddy  had, just became so glaringly obvious, we didn’t know what to do. So, we obsessed. We read, we watched youtube videos, and we read some more. We actively tried to teach Maddy some of the milestones she was missing (with some success).

We were fortunate enough that we didn’t have to obsess for too long. We had already scheduled a visit at Maddy’s daycare for her Occupational Therapist and Behavioural Therapist (BT), followed the next day by a post-daycare home visit by the BT. I couldn’t keep it in any longer and I just straight out asked the BT – was PDD something we need to keep on our radar?

I wasn’t surprised at all when she said yes. She said that they’re finding Maddy a tricky case – a lot of her delays are congruent with a PDD diagnosis. On the other hand, some of the skills she has developed aren’t typical in a child with PDD. It’s exactly why Eric and I couldn’t quite decide whether we were on the right track, or worrying a bit too much. The BT confirmed that Maddy’s behaviour is atypical (and she saw her on two of her good days). That being said, the BT believes that there are enough red flags, that Maddy could be a more atypical presentation of PDD. So what can we do about it?

We’re going to start with a three-week intensive therapy program that will teach her some of the skills she is missing – like how to respond to her name, how to more consistently use gestures, how to imitate vocal sounds, and how to purposefully play with toys. After this program, the BT believes they will have a better idea of whether or not Maddy is delayed for no apparent reason and can catch up, or if there is an underlying reason to why she is delayed (other than the SPD).

The BT also recommended that we get a referral to a developmental pediatrician. Not gonna lie, I’m a bit nervous about asking our Dr. for a referral (despite the fact that he’s super nice). I just really feel like a crazy mom who is always bringing things up to him. But, I’ll suck that up for Maddy – it’s funny how as a parent you’ll take being crazy over denying your child services they might need. The reason for the referral is that the wait list is long. If in that time, we discover that Maddy has caught up and is no longer having issues, we simply cancel the appointment. Alternatively, if the appointment rolls around and we’re still having challenges, we don’t have to wait. At that time, she can be assessed for PDD.

The only other thing we can do is wait and be patient. Blech.

So what do we know? Not much more than we knew last week (except that we’re not crazy, there are a lot of PDD red flags in our sweet little girl). How do I feel? Up and down and all around. I’ve cried way too many times this week, and I’m not really sure why. If this is what PDD is, I want that label. I want Maddy getting all the resources she can get. Getting a label doesn’t change who Maddy is, or the challenges we have at home. It doesn’t make things more difficult. It just gives a name to what we’re experiencing. It gives us a support network that isn’t available to us right now. It gives us renewed hope that with more therapy, we can meet Maddy’s challenges and make it so that she doesn’t have to struggle as much day-to-day.

Knowing all of that, it also breaks my heart just a bit. It makes me wish I could change things with a snap of my finger, making it so that Maddy is better able to communicate and make sense of her world. This whole parenting thing is not what I expected. It hurts a whole lot more than I would have ever imagined. Would I take parenting away to get rid of that hurt? Not in a million years.

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5 responses »

  1. You and Eric are wonderful, loving parents with a very special little girl who has all the support in the world….she is very lucky to have you both and you her…prayers are with you, Eric and Maddy…..and don’t forget you have wonderful families to help when needed….

  2. Oh Ashley.
    I keep hoping things will get better. Maybe not magically, but manageably. Maddy is a special little girl and it is better to worry about the coulds and try to do something about it than avoid it because you don’t want to sound crazy.
    I wish it were as easy as you being crazy because then it would be all in your head and you wouldn’t have to hurt so much. Not that mental health is a laughing matter, but it falls under the magically manageable I believe as opposed to the helplessness it sounds lie you’re facing.
    If you need a scream or cry, feel free to flood my phone lines or inbox.

    Take care and you guys are in my thoughts.
    Ash

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