A Letter to My Friends

Dear Friends,

I am sending you this e-mail to give you an idea of what life truly feels like these days! This is not DRAMA or EXAGGERATED feelings, but what people experience that have a child with a disability. The world continues its normal everyday pace without looking around to see what others are going through. If someone does notice, it is usually followed by a statement such as, "Oh that is too bad." Only a very few people extend their hand and say how can I help? Or what can I do to help make a difference in your world? Isn't that why God put us here on earth, to help one another? Are too many people looking at life as "its all about me"? Will someone consider assisting you in the research of the latest and best treatments available? If so, then that person would find out that Autism is the top childhood disorder and even more common today than such diseases as childhood leukemia. They will also find that people have lost their houses, their marriages and are emotionally exhausted. Some acknowledge that this is a life long journey with many hard bumps along the way. Is this something they brought upon themselves? Did they volunteer for this? Or just the luck of the draw?  

The days of calmness and hours of tranquility are long gone, for now anyway. The time spent as a couple sharing feelings and dreams are constantly interrupted. They are interrupted by outbursts of cries, and as you are trying to figure out what is upsetting your child, you find that there are no obvious reasons. He can not tell you, so you start examining from head to toe and trying to figure out what could be so upsetting. Similar to raising a 6 month old but stuck in that time frame for months and months. Raising a child with autism takes lots of patience and a lot more prayer. You have to adjust your mind to the fact that even though your child looks like he is 4 or 5 years old, his mind, verbalization and capabilities are anywhere from 6 months to 2 years old. Until the therapies and treatments truly start working it appears that you always stay at least 2 years behind. Restaurant trips are difficult, food shopping trips are terrible and just to stay home and accomplish 1 chore on a list of 20 is a major ordeal. Three quarters of dinner time is spent teaching how to hold a fork, pick up foods on his own and to repeat over and over what each food is that is in his plate. The therapies and teaching start from the minute he wakes up until he gets out of school, and then continues after we walk in the door from work. Then he finally falls asleep anywhere from 8:30 p.m. - 12:00 a.m. If one of us has not already fallen asleep with one of the children or both, we then fall into bed with a few hours of sleep under our belt. Sometimes we are not lucky enough to sleep through the night because for whatever reason, Joseph wakes up and it takes awhile before falling asleep again. Then he might miss the bus and the school is angry with us that he is not arriving on time. That is in addition to fighting for his educational rights. The battle is continual!!! The stress of the unknown for his future is the most difficult part and the financial burden is never ending and overwhelming!

Certain developments that are typical for some children are major milestones for our little boy. We have started RDI Therapy to help him interact with others more appropriately and look to us for visual cues of approval to help alleviate his anxiety while in a stressful situation. We have seen some great achievements. Last week, while at an evaluation consisting of 5 therapists, Joseph, and myself, Joseph continually looked to me for reassurance as all the therapists interacted with him, sometimes 2 people at a time. I nodded my head to him and mouthed the words "It's O.K.”, he calmed down and continued the testing instead of an outburst of crying with no visual interaction. This very special milestone day Joseph was unable to catch my visual attention for a few moments and out of the clear blue yells, "Mommy, Mommy". I jumped up and with surprise asked the therapists if they prompted him to say my name. They said “no, we were talking about the parts of the body and he kept looking over our shoulder at you. As you were directing your attention to the other therapist and he could not make eye contact with you, he just called for you”. With tears in my eyes I ran over to Joseph, planted a huge mauve colored kiss in the middle of his forehead and said, "do you all realize that this is the first time my 4 year old has ever said my name"!

This type of interaction and verbalization gives us great hope for our son's future.

Christine Spicochi, Joey's Mom

(Joey is 4 years old and lives in Marion County with his mom, dad and 12 year old sister.)

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