My daughter Adalyn was diagnosed with autism and sensory processing disorder at age 2. One of the most challenging things about being a special-needs parent is combating problem behaviors and self injurious behaviors.
I’ve learned that when you’re doing the same things over and over, you shouldn’t expect different results. So when I see behaviors worsening, I try to change her routine and add experiences that may help or lessen the behaviors. I know change in routine for kids with autism can be difficult, but for us, I’ve seen improvement in sleep and less need for negative behaviors when we add in extra activities that she enjoys.
I notice changes of behavior in my daughter Ady especially around season changes. She loves being outdoors. She is definitely a Summer girl. So when the weather starts to get chilly and the days seem shorter – our time outside isn’t as frequent. I try to plan activities that she can participate in. School sports clubs aren’t ideal for us. She loves being around other kids, but with all of her challenges it wouldn’t be appropriate.
The thing is, trying to find people that are willing to work with Ady aren’t always easy. It’s not that we’re being denied, but experienced individuals that are willing to do the work are hard to find.
I don’t consider waitlists to necessarily be a bad thing. I’ve learned from when she was younger that it’s not always easy finding the right people and it shouldn’t be done out of convenience. if someone isn’t a right fit it’s best to wait. I consider everybody that works with our family to be a team. They don’t just work with Ady they get to know our family and are part of our everyday lives.
It takes a lot of planning and communication and finding the right team. My daughter is involved with an all abilities gym, horseback riding, gymnastics and swimming.
It’s work to find people that have experience working with children on the spectrum. All of which need to have the time and patience to work one-on -one with her. I truly feel the people that she is working with her have the best intentions for her. I know they are working hard to help her to achieve success and be the best version of herself.
I wish there were more opportunities for kids with disabilities for extracurricular activities, but it’s very difficult. None of these sports or activities are covered by insurance, but they should be. They make a big difference in her personal well being. I notice that her sleep and behavior both improve when she gets to participate in activities that she enjoys.
I do all of these things because I want to see her thrive and be happy. She doesn’t ask for much and there are few leisure activities that she prefers.
It’s very difficult seeing a her hit her own legs or bite her hand in frustration, or be in any kind of discomfort. It’s such a helpless feeling as a parent. She uses a speech device but sometimes she’s just not able to tell us what she wants.
When she was younger we went through waves of behaviors, but as she gets older they’re different. She can be content and happy at times and the next day be frustrated and destructive while looking for ways to fulfill sensory needs. That is another reason why we try to promote different outlets for her so that we can see what works and what helps to calm behaviors.
We’re on a positive path. We’re always going to be a team and she knows I’m always going to be by her side. Some days aren’t easy but we got this.
I feel very grateful to have her as my daughter and I’ll continue to foster her interests and promote meaningful experiences for her.