My son and I were watching an Abbott and Costello movie. About an hour into the movie, Nokomis came in and decided she wanted to watch with us. She told my son that she wanted to lay where he was and also use the blanket he had. I told her that was not going to work and offered her my place on the couch with my blanket. She accepted my position but my blanket was not going to do. She immediately went into a rage, throwing her cake on the floor and hitting me while I prevented her from getting to my son. My wife picked up on this and came down and "lured" her out of the room. This is how it goes sometimes. A relaxing and peaceful moment can change in an instant.
Having a member in the family with FASD has its challenges to say the least. I often wonder how my other 3 children are affected by this. Yesterday we brought my youngest daughter, Harriet, to a store to have her ears pierced. We asked her if she wanted her sister, Nokomis, diagnosed with FASD, to come along. This was our birthday gift to Harriet and didn’t want to spoil it for her by risking the potential trauma that can occur when visiting places like this. We had made arrangements for Nokomis to stay with friends in case Harriet said no to the idea. To my great pleasure Harriet said she wanted her sister to come. She knew that bringing her had its risks but also knew that her sister would also enjoy watching the events.
This is a good thing on many levels. Harriet chose the more difficult option because she wanted her sister to be happy. Her desire to see her sister happy demonstrates a willingness to forgive Nokomis for all of the times she has hit her, called her names, and taken her things. By making the choice she made, Harriet has shown some understanding of her sisters’ condition. Harriet and I have talked and prayed about Nokomis being a blessing from God for our family. My hope is that this is God at work in her.
Dad Mom wants you. Ok, I will be right there. No Dad she wants you NOW!. Yes, I'm coming. DAAAAAD NOW!
Another round that can be heard frequently in our house. My oldest daughter has made a request she expects to be acted on with the greatest urgency. She does not understand that I must put down the things I am presently doing to get up. A moments delay to her is interpreted as being non compliant. This serves to escalate her reaction and soon turns into name calling and more. In the mean time I must focus on controling myself so as not to react in a manner consistent with every nerve in my body.
We should probably know better than to relay messages to another through this child, but we forget. How often we forget that she is not like our other 3 children. How often we act as if she is. When this happens we are quickly reminded of our forgetfulness by the rage that is displayed for all to hear. Sometimes by those outside of our house!
This morning I received a call at work from my wife letting me know my oldest child is already pushing her to the limit. Here we go again! Why? What’s going on here God? This is where I always go as I try to process our situation. The question I’m asking is not concerned with the “why” of my daughter’s specific actions but rather with the “why” of God’s specific purpose. I believe that God is purposeful and acts according to his sovereign will. I take comfort in knowing he is with us during this time. Psalm 107 is helpful to me for trying for understanding the “why” of his actions.
Psalm 107 is a bible passage about various situations where the people cried to the Lord in response to their distress (vv 6, 13, 19, 28). The chapter refers to this as Gods steadfast love that endures forever. How often have we cried to the Lord for help as we come face to face with the erratic behavior that is so common among children of FASD. At these times of “distress”, passages like this one remind me that he is not absent from my life. When we cry to the Lord we glorify him as we go to him with our needs and concerns. We actually acknowledge him as God and ourselves as dependent on him. I think this is a good thing.
Whoever is wise, let him attend to these things; let them consider the steadfast love of the Lord. Ps 107:43
My son and I took the remaining eggs and decided to create a breakfast meal for the ages. We mixed the eggs with ham, cheese, onions, and green peppers (our favorite). My oldest child came into the kitchen, saw what we were doing, and decided that she wanted eggs as well but without the green peppers. Sorry, sweetheart but the eggs are all gone, I said. How can this be?!. She than grabbed the broom and came after my son and myself to express her displeasure. In the meantime, my wife went to the neighbors house and borrowed a couple of eggs. When our eggs were finished I shared some eggs with her and she liked them. She wanted her Mom to make the eggs exactly like the ones we made! Fortunately, my son and I anticipated this outcome and saved some of our eggs just in case.
Mom! Maaaahhm! MOM! Yes, what is it? Get me a drink of water! Music to my ears. Of course there is the Dad rendition as well but not as frequently recited. This is a tune heard everyday with maybe a few exceptions throughout the year. Though the request portion of the song may change moment to moment the refrain stays the same. It’s a tune that provokes many internal reactions most of which must be controlled. Reactions guarded only by the self which is so unpredictable and many times too weak to do so. The song affects all who here it. Any failure in successful self control by any person within earshot only serves to provoke rage in the singer.
Get over it that’s what children do. She will grow out of it. That’s what my children do. That’s the response you get when you share with friends, family, coworkers, and others who do not have a special needs child. The singer I am referring to is my oldest child. She has been diagnosed with Fetal Alcohol Spectrum Disorder (i.e.FASD). The difference between the non-FASD child and mine is the intensity of the command. The rage of my child is provoked when the command is not satisfied. Most children would back off on the command if the parent told them to take care of the request themselves. The command is also 10 times the magnitude of the non-FASD child. In fact, I would venture to say, the tune referred to actually consists of 4 mutually exclusive commands, the first two which were not satisfied.
This is what happened last night. The response was controlled and the commands met satisfactorily. In part because the 3 other children were outside and only my wife and I were the participants. Next time could be different which is more likely than not.