Well, it has really been a while since I last wrote on this blog. We have been super busy and doing our best to enjoy the summer months here in Minnesota. I decided that this year, for the first time, I would pull Emily out of all of her therapies and try to allow her to be a "normal" five year old kid. Some days I think that I have accomplished this and others I have not. Emily continues to go swimming at a close by heated (indoor) pool and continues to receive Cerebral Electrical Stimulation therapy, just not the standard OT, PT or Speech. Being "normal" or "typical" is very hard when you have special needs. With Emily there are so many factors that we have to consider when planning outings: time of day, tube feedings, weather, sunlight, heat, bugs, bowel movements, supplies needed, medications, and so much more. It literally takes at least an hour to pack up all of Emily's supplies if we plan to be gone for more than four hours in a day. She has so many things we have to bring along for every possible scenario. It can be overwhelming and exhausting at that. We also have to watch what we do and how much it will be exposing Emily to the sunlight. With all of the seizure medications Emily is on she is photosensitive and has a hard time sweating to cool herself down. So of course we always have at least one personal fan or more along with at all times.
Since Emily is not able to use her arms and legs in a purposeful manner we have to watch out for bugs. So if there is at least one mosquito out then we might as well take her in cause there is no way to keep her from getting bit - even with bug spray. Not to mention that the chemicals in bug spray are way too harsh for her hypersensitive skin and the natural stuff just does not seem to do the trick. Lets face it we live in a state infested with mosquitoes so a safe place for Emily is on our screened in porch. The view is nice from the porch, but you can only sit out there so long before boredom sets in for Emily.
In the summer time Emily seems to have a flare up of crying events. This seems to be related to the heat and intensity of the sun, but we also suspect some mid-summer allergies that have not shown up on any tests yet. We always get to late June and have to increase Emily's Neurontin which she takes for unknown neurological pain and possibly anxiety.
I feel bad because it is hard to plan anything with Emily. You have to pretty much be ready to be spontaneous with plans cause if you make them in advance her world seems to crumble right when you are ready to leave. After five years I have grown to expect this, but nonetheless it is very frustrating to me. I keep so upset that our life is not what I have in my mind to be "normal". I usually get over this pretty quick, but it is still hard for people outside of our home to really get how hard it is to make plans happen with a child that is so touchy in so many ways.
My husband and I try so hard to give Emily experiences that other kids her age would get, but that can be such a challenge sometimes. We have to keep in mind too that Emily has a little sister that does not have any medical or special needs and she needs to have "typical" experiences too. We do not want Isabelle to have resentment towards her sister and feel like everything is catered around Emily. So as hard as it is for me, we sometimes have to leave Emily behind with a caregiver and do things as a family without Emily. This breaks my heart, but I do know that in a "typical" family not all kids participate in all family outings, nor do all siblings participate in the same extra curricular events.
So if you see us out and about in public with Emily, you know you have seen her on a good day and the stars were aligned just right to make it a success. If we are out without Emily you know that it was a rough start or just not something she could handle without a meltdown. Please be kind to those parents of children with special needs of all kinds because it takes a lot of planning, patience, and bravery to face the world on such a small outing as going to the store!
Since Emily is not able to use her arms and legs in a purposeful manner we have to watch out for bugs. So if there is at least one mosquito out then we might as well take her in cause there is no way to keep her from getting bit - even with bug spray. Not to mention that the chemicals in bug spray are way too harsh for her hypersensitive skin and the natural stuff just does not seem to do the trick. Lets face it we live in a state infested with mosquitoes so a safe place for Emily is on our screened in porch. The view is nice from the porch, but you can only sit out there so long before boredom sets in for Emily.
In the summer time Emily seems to have a flare up of crying events. This seems to be related to the heat and intensity of the sun, but we also suspect some mid-summer allergies that have not shown up on any tests yet. We always get to late June and have to increase Emily's Neurontin which she takes for unknown neurological pain and possibly anxiety.
I feel bad because it is hard to plan anything with Emily. You have to pretty much be ready to be spontaneous with plans cause if you make them in advance her world seems to crumble right when you are ready to leave. After five years I have grown to expect this, but nonetheless it is very frustrating to me. I keep so upset that our life is not what I have in my mind to be "normal". I usually get over this pretty quick, but it is still hard for people outside of our home to really get how hard it is to make plans happen with a child that is so touchy in so many ways.
My husband and I try so hard to give Emily experiences that other kids her age would get, but that can be such a challenge sometimes. We have to keep in mind too that Emily has a little sister that does not have any medical or special needs and she needs to have "typical" experiences too. We do not want Isabelle to have resentment towards her sister and feel like everything is catered around Emily. So as hard as it is for me, we sometimes have to leave Emily behind with a caregiver and do things as a family without Emily. This breaks my heart, but I do know that in a "typical" family not all kids participate in all family outings, nor do all siblings participate in the same extra curricular events.
So if you see us out and about in public with Emily, you know you have seen her on a good day and the stars were aligned just right to make it a success. If we are out without Emily you know that it was a rough start or just not something she could handle without a meltdown. Please be kind to those parents of children with special needs of all kinds because it takes a lot of planning, patience, and bravery to face the world on such a small outing as going to the store!
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