The level of acceptance of Christopher varies. He has a great little friend here named Kason. He walked with Christopher at the Montpelier Relay for Life. Kason witnessed a horrible seizure just the week before that Christopher had, and still he is by Christopher’s side. A seizure is not a pretty thing to witness, and Christopher’s are kind of scary because he stops breathing and turns blue. Some people smile a genuine smile, others a sympathetic smile, while others give a disgusted look. Other people hear him holler and keep their kids away or move to another part of the restaurant even when it is a happy yelling. I know it is lack of understanding, but we are open to questions and want people to understand him. I am sad for those who do not have the opportunity to know Christopher or other people like him.
Christopher is such a tenderhearted person with a great sense of humor. He loves to be outdoors, loves to camp, and go for a 4-wheeler ride. That is a difficult task because to keep him safe Ty and I both have to ride on the wheeler with him. So we find safe trails and go slow. Our dream is to have side by side for him one day! He loves Smore’s and snuggling by the campfire. When he is in a giggly mood- he is very ticklish. When he is “up to something” he has a little devilish laugh and looks out of the corner of his eye. Christopher loves to go for a ride in the truck as well. Christopher loves having stories read to him! He is a big fan of Curious George, Berenstein Bears, and Dr. Seuss. I think Curious George is his favorite- I think he likes the mischief that silly monkey gets into! He loves to go to the movies and eat popcorn! He loves music with a good beat to it! He likes to dance.
Due to his condition, Christopher is not potty trained. He chews on his shirts so we give him small flannel lap blankets for him to chew on. We spend a lot of money on shirts for him- thank goodness for thrift stores. He will put just about anything in his mouth- just like an infant/toddler does. He can use a spoon but not always effectively or as easily as he would like. He gets upset and hollers sometimes! There are many times when we do not know what it is that he needs- which is very frustrating and heart breaking. Other times we know he needs a drink or a diaper change. He still bangs his head when he is mad. He cannot tell us if his back itches, and he can’t reach it. He can’t tell us he has a headache or a toothache. Imagine feeling sick and can’t tell someone what you are feeling so you can’t get the help you need for it. Think about how alcohol was the total cause for that. Think about how it is 100% preventable! Christopher relies on others for diapers, cleaning, brushing his teeth, food prep, feeding him (he can do some of that), giving him meds, showering, getting dressed for they day or in pj’s at night, and many things that most people can do and might take for granted their ability to do so.
Christopher is one of six children. We have a garden variety of children, some adopted some not, and two of his siblings have Fetal Alcohol Effect (FAE). They each had their own set of complications due to the alcohol ingested by their biological mom during pregnancy but are able to walk, talk, work, learn, etc. Although for my daughter- marriage and a life like that is not in the cards for her, she will never experience being a mother because of her delays in learning. But she is high functioning enough to want those things for herself- she also never will have a drivers license. Imagine being 22 years old and knowing these things can’t happen for you- and knowing that it is because of alcohol- a choice someone made for her before she was even born.
Christopher has spent many hours on the sidelines while siblings played baseball, football, ran track etc. He spent time at home with other siblings when he didn’t feel up to going. He has traveled to all-star tournaments and out of town events for his siblings. Our household is down to Ty, Christopher, our youngest Troy, and me. Troy works a lot so many times it is just the three of us. It is time now for Christopher. He loves to go for a walk and I have wanted to complete a half marathon so we decided to do it together. So The Soda Screamer is our chance!! We are so excited. We have been over there to check out the course and to see where Ty can meet Christopher and me if Christopher would need anything or have any problems. I walked behind Kelly Park and although the trail is wide enough- the ability to get him out of there or Ty in there to help if he would have a seizure has lead us to the decision that Christopher will not join in with me until I am out of the park trails.
We have decided it is time to get some awareness out there for FAS and FAE and how preventable it is! Simply not drinking alcohol could have made Christopher’s life completely different. I am so thankful to know him as he is, but his struggles and the times that he is so upset and we can’t calm him makes us frustrated with the knowledge of how easily his life could have been different had there been no alcohol during pregnancy. There is no safe time, no safe amount of alcohol during pregnancy. If you are trying to get pregnant don’t touch a drop of alcohol. One drink can create the conditions like Christopher has. Resources are limited in our area for special needs- extremely limited. Finding people who can take on an adult like Christopher is difficult. We have no assistance, no respite care, and for us a home is not an option.
We would love for everyone to learn more about the affects of alcohol during pregnancy and be aware of how preventable FAS and FAE is. Fetal Alcohol Effect has fewer complications than the syndrome but often times it is not easier to cope with, it can almost be more difficult to understand for parents and the children. If you are pregnant and have been drinking, or if you are unsure if your last drink was prior to pregnancy- talk to your dr.! http://www.nofas.org/ has more information.
The cost of FAS/FAE varies but for us alone- we have to buy adult diapers (about $100.00 a month), tshirts constantly! (he averages about 2- 3 wearings of a shirt before they are not really nice enough to wear in public) Even at thrift store costs it is outrageous what we spend on clothing, diaper wipes (14.00 a case, and we can use up to ¼ of a package a diaper change), special cleaning liquid for diapering (around 10.00 a gallon), sippy cups (8 dollars for a two pack) - we have to constantly replace these due to him biting them and making them leak, and flannel for lap blankets. His newest wheelchair even after insurance will be costing us around $500.00 for our co-pay and some needed accessories (we are hoping to have that soon so we can train better for October 9th!-his old chair will work but be much harder to maneuver) . You add all this to what we spend for Troy and his diabetes (about 200 dollars a month for his supplies), we have very little extra money-if any.
We are so thankful that Soda Springs offers free movies during the winter and that the Soda Screamer has donated the registration for us to come be a part of this. It is so appreciated! Thank you to those businesses that make the donations so the Id-an-ha can offer the free movies!
We would love everyone to come out and support us in our efforts to complete the Soda Screamer in less than four hours!! Come cheer for Christopher!
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