One of the biggest issues we faced over the past 6 months with Liam was his sensory issues. A fellow mom of a child with Albinism said it was like raising a child with a sensory disorder like Autism; we quickly figured out what she meant by this too. Our vision therapist reassured us that almost every child with a significant visual impairment/blindness has sensory issues that often even land them on the autism spectrum though they do not have autism. This is due mostly to the fact that they are tactile little beings, meaning they rely on their sense of touch (and sound) to navigate their world. When that is disrupted, like in loud noisy rooms or with too much touching or not being allowed to touch other things, it can overload them and lead to meltdowns. To avoid this she told us she would be working a lot with Liam on sensory therapies. Slowly from the things we saw her do with Liam in therapy, we were able to construct sensory stimulating situations at home to keep practicing with Liam.
Some issues we faced starting out: dislike of messy hands, dislike of certain food textures, dislike of noisy nursery rooms and situations, dislike of swings or uncontrolled moving....the list just goes on.
Now here are some things we started working with him on at home that have really seemed to help with his sensory issues (which are mostly invisible now to the untrained eye but appear on occasion.) We are always careful to watch when we think the situation will push Liam to a melt down (like nursery still does, and large gatherings with non familiar family).
- Bubble baths- We had to really ease into this one with blowing bubbles and learning first to pop the bubbles. Once we did this he was easily comfortable with bubbles in his bath.
- Swimming- At first Liam would only go into the water with me if he was firmly attached to my chest, legs wrapped around my waist. I had to really work on facing him outwards and getting him to relax and kick the water with his feet. Slowly, he started to venture further away from me, frequently coming back to gain more assurance from Brian or I.
- Ball/Sand Pit- This was Gigi's idea when we first started out because at therapy Liam's therapist would get in the giant ball pit with him in her lap at every visit. Each time he would spazz out and claw his way out. Every week they would try again, easing in one leg at a time until his torso was in and he was fully surrounded by the little balls. We made our own at home with a cheap kiddie pool and a bag of the same plastic balls. (She said the balls were easier than sand but either served the same purpose.)
- Playing in the Leaves- When it's too cold outside to swim, a big pile of leaves will still do the trick. This is just like the ball pit, submerging him in the leaves or sprinkling them over his head. Only because he can throw them back on us, did he eventually begin to love this!
- Wrestling- It's simple but effective! The constant contact all over as he and his daddy wrestle along the ground, is a great sensory activity.
- Finger painting- One of my favorites! Read about it HERE.
- Swinging- This we also did each week at therapy because it removes Liam's sense of control and would always send him straight into a meltdown. To get past this, we had to start with small movements in the swing, and make encouraging sound affects like WOOOHHOOOO and WEEEEEE!! The minute he started to panic we had to remove him from the swing. Each session he sat a little longer, until finally there was a giggle....then another.....and another. Right now , 1-2 minutes is our max, but for that 1-2 minutes we giggle with enjoyment.