Friday, 14 March 2014

Getting out and doing something.....anything

As a large family with special needs getting out of the house can be a challenge.  Currently we have 12 children living at home (one of those being an adult) of those 12 we have many challenges for accessing our community - between 7 with seizure disorders that are currently presenting cluster seizures, 2 requiring wheelchairs, 2 needing a stroller, 4 being in diapers, feeding/swallowing and diet needs, a multitude of sensory challenges, etc.  With these issues getting out the door can be near impossible little lone finding something fun to do as a family.

We have needed to look at ways of getting around our various limitations.  For example having children not babies in diapers means finding alternative places to change diapers.  Those fold down change tables in public washrooms won't support an 8 year old, the counters are to small and not private, the floor in public washrooms isn't going to happen, so where do you change them?  For us as we drive a large van and/or bus we have set up a changing station in the vehicle.  We carry all necessary items for any bodily fluid leaks and the clean up required.

Another issue is feeding as meals and snacks must be individually prepared for a few of our children to meet special diets and swallowing conditions.  We pack snacks, meals and beverages for every outing which means we don't leave home without our cooler.

We need to ensure where ever we are going is wheelchair/stroller friendly and what chair/stroller would be best suited for the terrain.  We like to go for walks in the forest so our conventional wheelchairs don't work well in this situation.  We also need to consider who is attending the outing and ensure we have enough people to push the wheelchairs and strollers.

To reduce the affects of sensory issues while out we have found we need to carry a few items just in case.  These items usually land in Mom's purse but are very helpful sunglasses, earplugs, and small snacks, it's not uncommon for me to have 7 or 8 of each of these items in my purse at a time.  When going out we also have the kids wear "hoodies" so if they are bothered by the weather they can put their hat on and be less troubled.
For the seizures we are limited in the ways we can accommodate for them.  We have meds with us at all times, we make sure that we have a way of getting that child medical attention if required, we make sure we have a way of transporting the child.  We would not go for a long walk/hike without a wheelchair or stroller to get the child back to the vehicle if they had a seizure and were unable to walk.  We carry a large first aid kit with oxygen (in the vehicle) because we never know what injury may be the result of a seizure.

All of this is a lot of work but became second nature overtime and having the vehicles set up with the required supplies has been a tremendous help.  Follow along to see the adventures we have.

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