Thursday, February 19, 2015

Thursday 13: 13 difficult things about parenting my kids with FASD

1.       Routine is VERY important for kids on the fetal alcohol spectrum. The more predicable the environment the better they function. Routine kills me. I don’t like anything about routine and sticking to a routine makes me feel as though my soul is being smothered. I want flexibility and change. This is not a characteristic that is good for parents with kids with FAS to have .I don’t want to go to bed at the same time. Get up at the same time, eat at the same time. You get my drift.

2.       It is important to leave enough time for a child with FAS to move from one activity to another. It may help to set a timer for 3 minutes and let your child know that when it rings it’s time to stop playing and get ready for school. It is said that children with FASD are 10 minute children living in a 10 second world. It LITERALLY takes some of my kids more than one minute to process what it is I have asked them. When I am expecting some kind of response they have not yet clearly understood what I am asking for. I already expect motion to be happening and they are still processing. When I am ready to do something I want to do it right away. Slowing down long enough for the things I have said to be processed is HARD – especially because all of the kids process at different speeds. In our house we have seven different people operating on seven different speeds and I want mine to be the one everyone is tuned into – and it isn’t!

3.       It’s not just moving from one activity to another. It’s moving PERIOD. Sweet Mother Mercy, I have two EXTREMELY slow children. I will never be on time to anything again in my life and being late will be the death of me.

4.       Managing money can be very confusing for people with FASD. Money and the value of money are hard to understand. $20.00 for a chocolate bar and $20.00 for a pair of new shoes may both seem like good prices. Money is an abstract concept. This means that while you can touch money and hold it in your hand, what money can buy or what money can do are “ideas”. Ideas are difficult to grasp. My oldest son took money that he had and tried to give it to a child in his class for Valentine’s day. He thought $20.00 was a nice gift to give someone – it WAS a very nice gift - but not appropriate! Thankfully the kid realized this was not something my guy should be doing and gave the money back to him. Had it been someone else I am not certain he would have had the money returned.  

 
5.       Change is very difficult to deal with. Along with big changes, kids can struggle with every day changes such as stopping play to eat, or changing from being at school to being at home. One of our sons has a hard time settling into school when the school year begins and he is in a new classroom with a new teacher. We work with the school to know as early as possible where he will be in the coming year so that we have a LONG time to prepare him for the new physical location of his class and locker and teacher.  He has developed relationships with trusted adults and when he was in grade two he would actually leave the classroom to seek help from another adult rather than ask his teacher a question. We found out in March or April that he had only JUST approached his teacher with a question – after being in her class for 8 months! (There are obviously issues with the fact my boy just walked out of the class when he needed help AND that he didn't trust his teacher, AND that we didn't find out till the end of the year!) 

 
6.       Holidays are all about change. Change is difficult to deal with. When December rolls around everything changes in a child’s life. The routine at school is different because classes are preparing to be finished for a winter break. Our school holds a Christmas concert, so there is time out of the day where they are rehearsing for the concert and not doing “normal” School day things. The routine the kids have come to expect at school is no longer there. Then at home we get a Christmas tree and decorate the house and cook different food and wrap presents and put them under the tree that no one is supposed to touch and then a strange man comes into the house and puts MORE presents under the tree for them! Can you see the many layers of problems this causes? We have tried decorating for Christmas early and leaving decorations up for more than a month. We have tried putting everything up the day before Christmas and taking it down immediately. We have tried many different things, but the reality is that having five kids with five different needs makes it impossible to do everything right, so we try to minimize the damage. This is one of the most difficult things I face and will continue to face year after year. It feels wrong somehow to approach the holidays with the perspective of “minimize the damage” instead of “party on!”  Christmas day is simply one of the most stressful days of the year in our family. That is simply the reality for our kids. My brother thinks I hate the holidays because I don’t want to visit anyone or have anyone visit us. I absolutely do not hate the holiday’s, they simply have to be interpreted differently for us now than they used to be.
 
7.       All children tell stories. Children see the world differently than adults do. But, children with FASD have a hard time knowing the difference between reality and fantasy. I have one son who lives in a fantasy world and one son who cannot comprehend anything that is not 100 percent concrete. In fact, we have to remind him that it is ok for his siblings to use their imaginations. He used to get frustrated and tell us “Mom, CJ is using his imagination again!” He would tell his brother to stop it. Because he does not like anything that is not real, he absolutely did NOT want the tooth fairy coming into his house and putting money under his pillow when he lost a tooth. The thought of a little flying fairy that he could not see absolutely drove him crazy, but it did save us some money!
 
8.       This same “literal” boy causes me grief in other areas also. He is out playing on the hill before the bus comes and I see the bus approaching and call out for him to “go to the bus”. He goes – but does not take his backpack. I have reminded him this morning already about three times to take his backpack and I STILL have to take it in to the school for him. When I ask him why he went to the bus without it he says, “Mom, you said go to the Bus. You didn’t say take your backpack and go to the bus”. While “normal” parents would say he needs to learn from leaving his backpack at home that if he forgets it he goes without it. The thing is he really DIDNT forget it. He did exactly what I told him – and if I keep his backpack at home he won’t actually learn anything because his brain is wired differently and he doesn’t “learn” from that – he is actually confused by it. He would not understand why I didn’t bring him his backpack when I was the one who told him to go without it!

 
9.       Trying to gather information from our kids is futile. For some the fantasy is larger and more real than “reality” and so when we ask what they did at school we hear about trips flying off the roof on motorcycles to the sky or flying home on the backs of migrating geese. While this doesn’t always bother me it can be frustrating when there is information we need (like – tomorrow I need to take my swimsuit to school for swimming)! Something happened a few years ago that still bothers me. What EXACTLY did that kid say to you to scare you from being in your bedroom at night? We know he said SOMETHING. We know where you were, who you were with and that something was said that has impacted you until this day.... WHAT WAS IT? Without knowing what has happened we will never be able to properly address it.

10.   Some children with FASD are very sensitive to touch, movement, light or sound. Because of the way their brains work, children with FASD may be so focused on what they hear, see or feel on their skin that they can’t focus on other things. When children have oversensitive senses, they may need to shut down. Or they might act out and act badly as they try to stop the thing that is bothering them. I can’t have the television on when the kids are getting ready for school in the morning. Some kids can’t do two things at once (watch television and get dressed.) some of our kids are very bothered by clothing and the longer they are dressed the more agitated they become. We were doubtful that they could make it through a school day without disrobing, so far so good. 

 
11.   The same sensitivity is the reason We have not been able to decorate our home in the way We would like to. We don’t have pictures on the walls, or cool decorations in the kids rooms. We started out with some cool stuff in Maxies room but he could not sleep at night and he was so fixated on the things hanging on his walls when he was able to he kept climbing up and taking everything down. We would put it up, he would take it down. We would put it up, he would take it down and break it. I had a vision of how my kid’s rooms would be decorated and it was going to be awesome. The reality is that the bedroom is bleak. A sleeping room only. I felt like I was not a good mom because I didn’t have cool things in my kid’s room, and a bad housekeeper because we have nothing personal in the house decorating the walls. I did laugh once (yup, once) watching a detective show on television where these two detectives went into a house of someone who was murdered and tried to profile the victim by the LACK of personal items in the house. No books on bookshelves, no photos on nightstands. They said something like the person was trying to mask their identity or had some kind of personality disorder. I just thought perhaps they had an FASD kid.

12.    Sensitivity again – this time as it relates to stimulation. We don’t play the radio in the van when we drive. The sound of the tires on the road and the wierd echo of voices in the car is too much for some of the kids, in addition the speed at which the visual stimulation is passing them by, a car trip is a nightmare for some of our little’s. Playing music would literally be adding fire to that storm.

13.   The biggest difficulty I have faced in raising children with fetal alcohol comes not from them, but from adults in the community. People who don’t understand that we are raising children who have PERMANENT, UNCHANGEABLE, BRAIN DAMAGE. They look at the kids and think they look normal - so they should act normal. They have an expectation that my eight year old should act eight – when in reality he is socially about 3. They think we are permissive because we “cater” to our kids. I know I have a lot to learn, and to remember, and to adapt, but it would be a whole lot easier with the support of more people in the community than with their judgement.

5 comments:

Michelle said...

Wow--what amazing parents you are! So many things to think about, and I'm sure a lot of that was learned by trial and error. They are lucky kiddos to have you!

Julie said...

Michelle, We don't think of ourselves as amazing parents because there seems always to be SOOOOOO much more that we could be doing - and it is hard with so many different and sometimes comflicting needs of the kids. But we do our best - and they are a joy!

april wilson said...

Your blog echoed my life Julie, I am new to this,my child was diagnosed last year and I am still discovering exactly what this means, whilst trying to manage being a single parent who began relative fostering caring 15 years ago. I had to retire 3 years ago as the last of my 4 adult children were moving on with their lives. I am reaching 60yrs and have 2 with disabilities, my youngest with FASD and 2 girls who are fine. I am reading so much all the time to get a handle on what I need to be doing. Thank you for such a heartening story. April Wilson, Adelaide, South Australia

april wilson said...

Your blog echoed my life Julie, I am new to this,my child was diagnosed last year and I am still discovering exactly what this means, whilst trying to manage being a single parent who began relative fostering caring 15 years ago. I had to retire 3 years ago as the last of my 4 adult children were moving on with their lives. I am reaching 60yrs and have 2 with disabilities, my youngest with FASD and 2 girls who are fine. I am reading so much all the time to get a handle on what I need to be doing. Thank you for such a heartening story. April Wilson, Adelaide, South Australia

Julie said...

April,
I hope that you found some understanding in the small amount I have written here. Please know that you are NOT alone - there are lots of us caregivers ot there trying to figure it out! There are good days and bad days. I wish for you more good than bad :) Hang in there.
Julie