The Essentials...

The Essentials…

I had this idea of a “starter kit” that kids/parents could reference when they first receive an autism spectrum disorder (ASD) diagnosis. I know from experience that when you first get the diagnosis, its overwhelming and information is flying at you from all directions. Google can be your worst nightmare. Even trying to find the right therapists as well as all their recommendations/advice is a bit much at times.

So, I created a quick list of first steps as well as essential items we found helpful at the start and even now. Please see listing below:

1. Assemble a team

   1. This is probably the most important step, hence it being number 1. Each person’s team will look different, but it’s important you have a doctor you trust (see blog about different types), and a team of therapists that can include, but not limited to: ABA, OT, PT, SPL, etc.

2. Equipment/Accessories

   1. When Addy was first diagnosed, I remember feeling overwhelmed with all the products and even gimmicks out there for ASD kids. There were some I didn’t believe in and have since changed my tune. In my personal experience, these are items we can’t live without. Do with it as you may, but my rule is to try everything to rule out what doesn’t work to truly find what does.

      1. Weighted blanket

         1. This was one item that at first, I didn’t understand what it did and how it could be effective, but now we own several and Addy sleeps with one every night. According to Medical News Today, “A weighted blanket provides deep touch pressure, which may have a calming effect on some children. Many blankets use beads within quilted pockets to distribute weight evenly. If a child gets too hot under a weighted blanket, you can look for blankets with cooling properties and breathable fabrics. Although not suitable for very young children or infant, weighted blankets might be a soothing addition for an older child to use when sleeping.” Please consult your doctor before trying these.

      2. Compression clothes

         1. As a toddler, Addy would crash her body to the floor. Why would she do this? She was seeking input. I am happy to report that this behavior has stopped! Now, she just asks for hugs/squeezes which I am more than happy to give her! So, how did we get here? Well, this was a bit more involved as it took years of occupational therapy to get her to understand what her body needed and how to regulate it on her own. In addition, we dress her in compression pants from Kozie Clothes (link here) and a Spio vest (link here) that she wears daily.

      3. Chewy necklace & bracelet

         1. Back in the day, (and sometimes now), Addy would put everything into her mouth. When I say everything, I mean everything from scissors to toys, to her own fingers; everything went to her mouth for oral input. With guidance from the team, we bought chewy necklaces and bracelets. I must admit I was against this at first, but it has cut down on what I like to call mouthing (which resulted in lots of drooling)! I like these chewy necklaces and bracelets (link here) as I can put them in the dishwasher, and she can’t break through them which is extremely important for safety reasons. Today, the mouthing has been reduced tremendously and she merely wears the bracelet and necklace as accessories.

      4. Headphones

         1. With Addy, we experience hyperreactivity. We believe her world can be a noisy place with sensory overload when in a loud place or because of too much noise. We identified this observing and listening to Addy while at school assemblies or musicals. Often, she was unable to sit still and/or would tell us “Too loud”. We recently purchased Snug Kids Ear Protection – Noise Cancelling Sound Proof Earmuffs/Headphones. They have been a game changer for her! She is now able to sit longer and enjoy herself by limiting unwanted noise.

3. Familiar Faces

   1. Find a support network of people (and related activities) who understand what you are going through. Being a part of community that understands makes a world of a difference, so you and your child don’t feel alone! See my blog on finding the right support.

      1. KidList – Has the scoop on sensory-friendly activities and events for children with disabilities! These all-inclusive events and activities are often limited to smaller group sizes to help reduce noise and activity, while increasing engagement and the ability for kids to move about. There are many new options such as theaters, play places, museum times, and movie screenings that accommodate special needs.

I hope these items as well as suggestions can help mitigate some of the unknowns. As special needs parents, there will always be fears and unknowns. However, after almost 9 years of research, sleepless nights, and trial & error of various devices/accessories; I’m hopeful that passing my experience on helps comfort not only your child but you as a parent/family-member/caregiver as well.

Much love,

Raising Addy