Miss the Bliss

Yesterday evening I went to my local TACA chapter's Coffee Talk meeting. Coffee Talk is, essentially, mommy therapy for autism moms, although an occasional dad shows up. It is a less formal, unstructured version of our regular TACA meetings; a time for talking about anything autism-related and everything else under the sun.

There were only four of us, including myself and three other moms. Somehow along the way we got on the topic of how autism affects every aspect of the lives of a family who has a member with autism.

I remember not long after my son was diagnosed, my father had become increasingly aggravated with me and told me it was because we (my family) had become so involved with autism that our entire lives revolved around it - as if we could just choose to separate ourselves from autism but instead made a conscious choice not to do so. Wouldn't it be great if it really was that simple?

Having only been into this journey for a short time when my father told me that, I did not know that my response should have been, "Yes, you are exactly right! Our lives do revolve around autism because autism has made itself a part of every single aspect of our lives."

No matter how much I would love to separate autism from our lives, it is there. It is always present and always finds a way to creep itself into every little detail of our lives.

Parents of typical children wake their children in the morning. In my house, my husband and I may be awakened at any hour of the night by our children who do not sleep well. Children with autism generally have an imbalance of seratonin and lack the ability to produce sufficient levels of melatonin - two hormones that, when out of balance, make for very poor sleep.

Parents of typical children give their children breakfast. My husband and I give our children a gluten-free, casein-free (GFCF) breakfast and more vitamin and mineral supplements than most professional athletes take. My children are full of metals and have gastrointestinal problems that cause them to have low levels of essential nutrients in their body or the ability to process foods properly in order to acquire those nutrients. The GFCF foods they eat help to heal their gastro issues and the supplements provide the nutrients they need where their bodies fail to obtain them through food.

Parents of typical children send their children off to school and bid them a nice day. My child goes to a private school with a full-time aide provided by our insurance because our public school system refused to give him an aide or allow our aide in school with him. They also refused to put necessary safety measures in place to ensure my child's safety without an aide.

Parents of typical children set up playdates for their children. My children attend a social group where they are integrated with neurotypical peers. Finding a playdate for a child with autism involves a monumental search equivalent to finding an ice cube in the desert. No, that's not right. Finding a playdate for a child with autism is not that difficult. The difficulty is in finding a lasting playmate for a child with autism.

Parents of typical children put their children in sports and activities like soccer and dance. My children take swimming lessons specifically for children with special needs so that they can receive one-on-one instruction.

Parents of typical children think nothing of sending cupcakes or cookies to school with their child for his or her birthday. When this happens, if I don't know in advance, my child is left out because he cannot eat the birthday goodies. How's that for "inclusion?" I did not choose to have my child on a special diet - his physical needs made that choice for us.

Parents of typical children think nothing of packing the kids in the car and taking off for a round of errands. For my husband and me, there is no such thing as a "round" of errands. If we can make it to two places with minimal problems and tantrums, we feel lucky.

Parents of typical children hire a babysitter for an evening and have a lovely evening out on the town for date night. My husband and I pay twice the amount for a babysitter as what typical parents pay and then we go out for a few hours with the hope that our son's next seizure will not occur on our caregiver's watch.

Parents of typical children take their children to the park or the library or a family outing and then relax or read a book or mingle with relatives while their children play. I have never been able to relax at a park for fear of my child bolting from the scene (children with autism are notorious escape artists) or injuring himself on the playground equipment because of his poor muscle tone caused by his autism and its internal workings or because he is having a tantrum for one reason or another. I have never read a book while my children play at the library, again, for fear that my child may bolt from the scene. I have mingled with relatives at family outings but only because my husband was overseeing the care of our children at the time.

This is what I mean by missing the bliss that other parents are fortunate enough to have. Actually, I do not miss it, as that would imply that I had it at one time. I have never had that peaceful bliss of just letting my children exist and play and live carefree lives. That bliss was ripped away from me just the same as a small piece of hope for my children to lead independent adult lives was ripped from them when they developed autism.

I have no point here, really. At this point, I am so over autism and while both of my children have made great strides towards blending better with their peers, autism still makes its presence very well-known on a daily basis. I grieve the loss of that carefree life I see so many parents around me living every single day.