Sensory Overload
Angelman Syndrome and sensory issues go hand in hand. This can lead to motions or behaviors that might seem odd to outsiders. With our Maddie, she definitely has issues when things touch the palm of her hands. This has delayed her crawling and even pulling herself up. You will often see her hands balled up into fists, instead of open.
Water is a great stimulant for Maddie. This is actually common among the Angelman community. People with AS generally love the water. Maddie and daddy are actually in a baby and parent swim class. It was a way for Maddie and dad to bond. We’ve also learned it’s a great therapy tool for Maddie. In the water, Maddie will do things that she wouldn’t do outside of the water. This includes pulling herself out of the pool.
We use water in other ways too. During her occupational therapy sessions, they will actually fill a shallow container with water. This encourages Maddie to use her hands to pick up objects. The water makes Maddie more engaged with her therapy, and she has been getting more out of these sessions after they introduced the water pan. We’ll also use water while Maddie is in her stander. We fill up a portion of her small table, and include toys and jello. This keeps her distracted from thinking about all of the hard work she’s doing while in the therapeutic device.
Besides being in the pool, Maddie loves to be in her swing. Thankfully our house has a basement that is wide open. We put up a children’s swing down there. Maddie will go back and forth just giggling. The motion of going back and forth helps to calm her. Besides going back and forth, Maddie loves to spin as well. We’ll put her in her Johnny Jumper, and instead of bouncing she’ll try to twirl herself around. If mom or dad helps, it’s even better.
Music has been a big part of Maddie’s life. During Maddie and daddy time, there’s always an hour or two of listening to music and dancing. Maddie will now respond to certain songs she has heard over and over again. While dad sings badly, Maddie has started to babble and copy certain sounds.
While we have adapted to Maddie’s sensory issues, there are certain behaviors that have developed that might be cause for concern. One thing that Maddie loves to repeat, is kicking. Maddie loves kicking the walls, the slats to her crib, the entertainment center, she loves kicking mom or dad when being changed. While this on its own isn’t the worst thing in the world, it has left Maddie’s legs bruised and scratched.
Maddie also has developed a habit of pulling hair. Thankfully dad does not have to worry about this habit. However with mom and Yaya, the hair pulling has become a source of concern. Certain behaviors can become destructive. We do not want Maddie to turn aggressive or turn to self harm. These things can happen if we do not manage her behaviors correctly.
We are brand new to the Angelman community. Thankfully there are great resources out there for us to learn more about the condition. With the help of Maddie’s care team, we’ll make sure she does not get too overwhelmed by the world around her. Our house will be a safe place for our beautiful girl.
-Written by Adam Birchmeier
