God has blessed us with 4 wonderful personal care attendants (PCA’s) for Nokomis. The momentary relief is much appreciated. This doesn’t mean that her at home behavior has changed, it just means we have to face it a little bit less. This change seems to have reduced the tension for everyone in the family. We all have better control of ourselves when faced with the “less” frequent outbursts. It’s amazing how a little relief can have such a big effect.
Saying no is difficult. Nokomis does not respond well to this one second sound! She has thrown tantrums that have easliy exceeded 90 minutes in response to this short answer. Along with the tantrums, there is the physical damage that goes along with it. So it is not hard to understand why it is so tempting to give her what she wants...
The problem with not saying no is obvious. Giving the child what she wants only serves to make the no that much more damaging. Children should not have everything they want because they truely do not know what is good for them.
My daughter can not have access to the internet. She asks but the answer must always be no. We had somebody watching my children the other day and sure enough, Nokomis was trying to persuade the person that the internet was ok for her to use. My daughter called me at work to get the password which I explained to the sitter was not allowed. The problem I was having was how to deliver the no with out putting the sitter in a volatile situation. I told Nokomis that we can't let her use the internet. It just isn't possible. I reminded her that she knew this was the case and that it just was not going to work out. I tried to take an approach that showed this to be "our" problem. I held my breath and said goodbye. Turns out she spared the sitter any trouble and acted like everything was fine.
The reason I mention this is not to give wise advice as to how to deal with a child with FASD. Often times, todays success is tomorrows failure. The point is that even though saying no is necessary, it does not come without great risks. In this instance God spared our sitter the trouble that could have easily happened.
Nokomis has been behaving very well the last two days. She has not been been bothered by her siblings nor has she bothered them. HOWEVER, last night she was very explosive and could not settle down for bedtime. Today, when she was playing by herself I told her how well she had been acting just like yesterday. I than asked her if she thinks she will be this way tonight as well. She said, "I don't know". I said you mean you may act like last night. She said, "I could". I than asked if that's how she wanted to act tonight. She told me that's not how she wanted to act. Let's hope all will be well tonight!
In a past entry I made mention of the use of "lures" to control behavior in our FASD child, Nokomis. Games (which may be considered a type of lure) are another means for controlling behavior. In our house there are currently two games that are played everyday to help our child. One helps her take her medicine the other helps her to sleep.
Nokomis does not take her medicine well. It sometimes takes 30 minutes for her to swallow several pills that should take 2 seconds. This can be infuriating! Just swallow the pills already! During our struggles we discovered her willingness to swallow if she thinks she is fooling us. Each day my wife or I will mention to Nokomis that she should take her medicine now so as to fool the other. We play it up big emphasizing how surprised the other will be when they find out. This works, she can't swallow her pills fast enough. One morning she even woke me up so she could fool mom before she came downstairs from a shower. After she swallows the pills we "secretly" discuss how surprised mom will be when she finds out. Once the fooled person finds out they are VERY surprised.
Nokomis also does not like going to bed. Often, after we get her to lay down she will get up and the process will start over. Again, we discovered that if she fools dad she seems to be more content to stay in bed. I think her anticipation for fooling me helps her to go to bed as well. Each night at bedtime mom will say goodnight. Nokomis, will ask mom to get daddy. This is where she prepares for the game. She will hide under her blanket waiting for me to see her. When I enter the room to kiss her goodnight I am faced with trying to guess which side of the bed her head is on. Some how I guess wrong every night! I am shocked everytime as well! This makes her happy and more content at bedtime.
Life is much more enjoyable when we discover fun ways to move our daughter. Games like these are fun and simple. It's much easier to embrace a content and happy child than one who is not. Nokomis likes to fool us. So now she "fools" us everyday!
I love Gods word. Psalm 139:13-16 is a passage that is of great comfort to me when I think about Nokomis.
For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
This passage reminds me of several things. First, God created my daughter as she is. Secondly, he created her for his purpose forming the number of her days. Finally, Gods work in Nokomis is wonderful. Admittedly, there are times that I forget that God is at work here in our family. It is so easy to take my eyes off of Him and focus on the rage and violent behavior of my daughter.
The other great thing about this passage is that it is not only true for my daughter but for myself as well. God also formed all of my days before I was born. This means He planned for Nokomis and I to live together. The end of the chapter gives us a hint as to Gods purpose;
Search me, O God, and know my heart!
Try me and know my thoughts!
And see if there be any grievous way in me,
and lead me in the way everlasting! vv 23-24
Nokomis was invited to a sleep over at the house next to ours. She was very excited about it and was prepared to go long before it was time. While sitting in the house she came up to me and said, “I was sent home because I was acting up”. She wasn’t mad, but rather calm, with a kind of “matter of fact” attitude about it. I told her that I was happy to have her back with us tonight. That’s when she told me she was kidding!
I like it when she is in a fun mood like this. I love her smile as she admires her cleverness, in fooling her Daddy. I have learned to resist the temptation to tease her back. These are moments meant to be enjoyed.
Dictionary.com defines the word lure as anything that attracts, entices or allures. This is the method of choice for moving our FASD child in a new direction. To be successful the lure must be eye catching, desirable, worthwhile, and for our purpose immediate. This is a hit or miss proposition with our child. Sometimes it works and other times you can forget it. Occasionally, when you change the lure you will achieve the desired effect. The tricky thing is that just because a particular lure worked one time it may not work the next time! We often engage in it instinctively.
We went to a restaurant the other day. Sensing a potential problem, while being seated, my wife began to immediately suggest the most special seat in the house (“eye catching”), between Mom and Dad (“desirable”) while pointing out the other children must sit on the other side of the table (“now worthwhile!”). That seemed to work but a second potential problem also existed (yes a double lure situation! You might say we were suffering double jeopardy!).
As we were being seated pictures and crayons were being dispersed. Now Dad initiated the second lure. Nokomis, can you color (“immediate”) this picture (“eye catching”) for me (“desirable?”) to bring to work (“worthwhile”)? Success! Both lures worked and the meal turned out fine.
The necessity for lures is constant. The unfortunate thing is that because they must be attractively dangled in front of our oldest daughter, the others become flustered and feel like they are missing out. Our youngest child has the most trouble with this while the other 2 now understand what is happening.
Today has been a good day. Nokomis has behaved as well as we can expect. She began to create havoc with the other children but that was short circuited when I asked the children to go outside. Later, I brought Nokomis' brothers and sister together to process the event. We decided that I should use a code word to let them know they are not in trouble when I ask them to leave. The idea is that on occasions where the situation is becoming violent, I will ask the children to leave the room. In so doing I will say a key word that will let them know what is going on. We incorporated the use of walkie talkies so I can communicate that the coast is clear. This makes the process seem more like a spy game which my children are into lately!
I’m driving down the road and notice several emergency vehicles up ahead. An ambulance is parked with its back gate open. 2 people are carrying a gurney with someone laying on it. As I see this, I notice something peculiar going on. A man on a bike is riding in the middle of the road weaving toward the ambulance. What is he doing?! As the person is being laid in the back, the man on the bike rides up to the vehicle to take a look. He is close enough to touch the injured party! Are you kidding me?! How rude! He has no business doing that. Doesn’t he know better? Less than a block afterward I had to smile because that’s exactly what I could see Nokomis doing. It would not surprise me to see a person with FASD do this. My daughter would be oblivious to the social custom of giving space in such a situation. It makes you wonder just how prevalent people with FASD are in society at large.
Here's the way it goes in our home;
1. We set some "rules" for our daughter.
2. Abide by them for awhile.
3. Disregard them in direct proportion to the success of the first two.
Over and over, this has been the pattern with regard to my child. We act as if the rule we set is the punishment and the absolving of it is the reward. We forget that the rule was established in the first place as a way to take control of a situation. Of course once the rule is no longer enforced our child begins to repeat her former behavior and we are again faced with handling the situation. As I put this down in writing I see the "humor" of my actions. I have not considered, that the reason for the success under the rule is because we were enforcing it!
In truth we tend to let our guard down because were lazy. We don't want to enforce rules because it is work for us to do so. But, a child who suffers from FASD (like the rest of us) needs some structure to cope with life. The difference for a special needs child is that the enforcement must be repeated more often and consistently in order for it to have any impact. Doing this well, will hopefully establish "habits" that will last a life time.
In a sense, rules are the outward inforcement of the "self discipline" that non FASD people sometimes practice. I have heard it said that children with FASD need an outer brain to help them make decisions that come naturally for others. Establishing "rules" of conduct is one form of this outer brain. Oh what a responsibility we have to raise FASD children. May God grant us the wisdom, patience and strength to nurture these people.