The Demanding Toddler
I am by no means a perfect parent. I get tired, I don’t do everything right, I get lazy. I don’t say these things as a bad thing. I think all parents go through this. So this isn’t a woe is me statement. It’s just the reality. Maddie continues to thrive despite everything. She knows that I love her, and some days this is all that I can give her.
Our day to day routine can get a little hectic. Maddie already goes to therapy 2-3 times a week. Every morning at 6:30 am we have to give her an anti-seizure medication. Every evening at 6:30 she has to take another dose of anti-seizure medication. Then she needs a B6 vitamin mixed into either apple sauce or pudding. She also needs either melatonin or her Klonopin, depending on what day she has had and how well she has slept the last few nights. Most of the time giving her medication is a two person job. One person to hold Maddie and one person to administer the medication. Then you just pray to God she’s not in a mischievous mood, because she will spit it out. Then there’s the nightly baths and of course all of Maddie’s meals.
Maddie’s needs have gotten more urgent. This isn’t because of her health, it’s because Maddie is becoming a demanding toddler. In fact, Maddie continues to be seizure free despite this winter’s cold and flu season. Maddie is also more mobile than ever, and she seems to enjoy playing in the sitting position, instead of her normal crawling position. She is stronger than ever, and more demanding than ever. She knows what she wants, and she wants it now.
There is a problem with this, Maddie’s communication skills continue to lag behind. Now Maddie can consistently do two signs, “all done” and “drink”. She used to be able to do the sign for more, but she has replaced this sign with reaching and crying out. Crying out and yelling seem to be Maddie’s preferred method of communicating with us now. This, as you can imagine, can fray our nerves a bit. We’ll leave the room for a minute, and we come back to our toddler screaming. Then we have to play a guessing game as to what she needs.
This new position we find ourselves in, is a combination of Maddie’s growth and some room for improvement from us as parents. I love that Maddie knows what she wants. I hate that I don’t always know what that is. This is the dilemma of a parent with a non verbal child.
I do know that I need to be better. We do have an AAC device for Maddie. It is an iPad, that eventually will be able to give Maddie a voice. She will be able to select different options from a preset list. She’ll be able to tell us what she wants, or at least that’s the idea. However, the learning stages of this device can feel like you’re spinning your wheels with your child.
I’m guilty of putting Maddie’s AAC device on the back burner. There is so much going on in our day to day that at times practicing with the iPad seems like a lost cause on some days. I’d rather not go through a process that Maddie hasn’t quite grasped yet.
This is my shortcoming. I do know that Maddie deserves to have a voice. Practicing with Maddie nightly will help develop that voice. It might even save us from a toddler temper tantrum. It’s a good reminder that progress with a child with Angelman Syndrome can be very slow, but so rewarding when they grasp a new concept.
I know I’m not the perfect parent, but I also know I need to give myself some grace. Maddie is loved and she is safe. She’s not going to grasp everything right away and I’m not going to get everything right. I do know that we’re set up for success, we just have to follow the process.
-Written by Adam Birchmeier
