Wednesday, October 5, 2011

I DON'T HAVE ANYTHING TO WEAR!

I was just posting recently about how easy our mornings are around here while Akila is at the crisis home. When she is home, we get up 1 hour before school- it is best not to be in a rush with her, or the rush causes all kinds of issues. I have been waking up the kids about 20 minutes before the first bus leaves and it has been really smooth.

As I was walking home from the bus stop around the corner this morning, I was thinking about how the mornings will be much "ickier" when Akila returns home. Some of you know exactly what I'm talking about. For those of you who don't, let me just say that it sucks. When she finally leaves for school, most mornings I have been called umpteen different nasty names, heard a ton of other foul language, possibly (usually) been kicked or hit a few times, had to try to get her to stop calling her siblings names and comforted her siblings, and had an epic fight to get her meds in her. When she gets on the bus and I get in the house and close the door, many mornings I feel like crying, but most often I just feel numb. It is not a fun way to start the day. Most mornings, this is when I go to the Word and spend some time in it.

One of my friends who has a teenager with FASD, recently received the following text from their daughter in the morning before she left for school: "I DON'T WANT TO GO TO SCHOOL. I HATE MY LIFE. I HATE EVERYONE AT SCHOOL. I'M RETARDED. IT'S TOO HARD. I DON'T HAVE ANYTHING TO WEAR. I HATE MY LIFE." It sounds like it was not a fun morning, the teenager was still yelling as she went out the door.

Often people who do not understand FASD ask me if it gets easier as the child gets older. My answer to this is always "NO!!!!!!!!!!!!!" It only gets harder. I think back to when Akila was 3, or 5 or 7 even- those were the good ol' days. When Akila is having good moments, like now when we visit her at the crisis home, it is like we are seeing the old Akila that we were able to enjoy so much more. Yes, she had issues back then, but the issues were not violent, did not include swearing, and the intensity level was lower, much lower. The majority of people don't understand this, they think that as a child gets older and more "mature", they should be able to control their emotions better.

This is where they do not understand how FASD impact the brain. Akila for example, is developmentally in most areas, closer to a 6 year old. Her body is that of a 12 year old (kind of, it is a bit complicated due to her Turner Syndrome diagnosis also), and she is surrounded by 12 year olds at school and is expected to act like a 12 year old. Now, yes, I agree, 12 year olds are generally stupid. I say that with much love and a degree in Youth Studies and years of experience working with middle and high school kids. I love teenagers, they have been my life passion professionally. But let's face it, they are dumb.

There is research showing how when kids hit the middle school years, they turn into dorks. That is exactly what the research says, dorks. Ha, not. But you know what I mean. Their bodies are going through tons of changes and they don't understand them. Imani who is 11, has always been the most sweet and mellow child. Well in the last 4 months or so, she is having these crazy fits of explosive anger. I thought it might be due to the stress of living with Akila, and on some level I still think it is. But I am really starting to think that it is due more to the hormones that are raging in her body and making her wacko.

FASD kids have a hard time when they hit the upper elementary, middle school/high school years. Learning becomes more abstract which they struggle with usually. Their learning disabilities become more apparent and they start to feel not as smart as their friends (if they have friends). Most special education programs in most schools, do a very poor job of understanding this. The kids are often called lazy, teachers think they are not putting enough effort into it, especially if they are not receiving much assistance. So far, Akila has done OK in this area, but I think it is mainly due to her excellent aide who helps her. Not all kids get a 1:1 aide though.

The text from my friend's child made me laugh, and it made me sad. The part that made me laugh, was the "I DON'T HAVE ANYTHING TO WEAR". This is classic FASD. She was going on about some real emotions, some real struggles. Feeling retarded, hating people at the school- these are serious issues.

I can sympathise with going to school and feeling retarded. I have always struggled with math, and I therefore have always hated it. With a passion. I was always in the lowest math group in school. Even in high school, I had to take the "stupid" level math class (that is what I called it back then)- and I struggled through it and barely passed. I still have math anxiety; I hate helping my kids with math homework, once they hit about 4th or 5th grade, I'm done.

I actually hate how they push complex and difficult math concepts on a kid with FASD. I actually believe strongly that when a kid with FASD, or a different learning disability that cripples the child, gets to a point with math (or a different subject for that matter), they should stop on the learning new concepts and just focus on the basics and reviewing that for several years. Seriously, algebra has done nothing for me except make me hate math with a passion- what good is it going to do Akila? These are often the breaking points for a lot of kids, when they start to hate school, start to skip classes or want to quit school all together. It can make their effect their entire school experience- often they start to do poorly in other subjects that they would be able to muddle through, but they are so caught up in hating school and how much their life sucks, that they stink in other subjects based on their attitude.

I know this does not apply to all FASD kids, but it does apply to a lot. I have been focusing on math, and this is probably because I HATE MATH. If I had a cell phone in high school, I probably would have sent the same text to my mom. And I really think that I probably am FASD as I know my mom drank while pregnant with me. Seriously, it could easily be why I stink at math.

I wouldn't have sent the part about "I HAVE NOTHING TO WEAR" though as I would have been smart enough to know that a sentence like that just took away some of my credibility. Like I said, when I read the text, I laughed about that line. Partly because humor is what gets me through this life, no doubt. It is like an Electric Company or Sesame Street (can't remember which show) skit on which one of these does not fit with the other. This is a young woman who has tons of great clothes, but nothing is ever enough. Another classic FASD thing; Akila is never satisfied. On the day of her birthday party, she received a ton of great gifts, but still threw a fit over wanting to go to the store and buy another doll (she had received 3 as gifts). I know another parent who is in the midst of bankruptcy and a big part of the reason, is that she would never say no to her FASD kiddo and bought them everything to avoid rages.

One of the really hard things when you have a kid with FASD, is to be able to see through all the crap and be able to figure out when you really need to step in and advocate. This is due to the fact that our kids are almost constantly in turmoil. When do we know if it is just them being a drama queen, or if they are at the point where they really need help. I'm not at all saying this about my friend who's daughter sent this text, but I am being more general.

It is exhausting dealing with all the drama, there is no way as a parent that we could sit every time our kids say they hate their life, and have a deep in-depth conversation with them about it. It is the boy who cried wolf syndrome. Our challenge as parents, is to figure out, when we need to step in. Is there something we could do that could make their life easier? Because I'm telling you, their life is not easy. I am always writing about how hard this is for me, or for Michael.

But can you imagine how hard their life is? Akila has no friends, and her siblings can't stand to play with her very often. She goes through the school day confused, lives in a constant state of anger and agitation. It has got to be hard. Right now, Akila genuinely believes that when she comes home, she will not return to her old violent behaviors. She can't understand why she can't come home yet. This must be confusing for her. Her life is infinitely more difficult than mine is, and her future is a rough one. But there are times when we as parents need to step in, see what changes we can make or advocate for, and see if it can make their life easier and thus ours as well.

I pray for this often in my own life. Lord, give me the strength and foresight to know when to make decisions for Akila; when to keep her home from school for a day and spend time bonding with her, when to turn into mama bear at a school meeting and buck the system, when to fight to so she is able to attend Bible Camp, when to start her on birth control, when (and if) to start legal guardianship papers for when she is becoming an adult, when to pull her from a class that she should not be in and I know this in my heart, when to fight with the county and other agencies to get her the services she needs to be successful.

It can sometimes feel like all I am doing is fighting, maybe the right word is advocating, but it feels like fighting. Fighting with the county, the school, the state, with Akila, and way too often, with my trust in the Lord. He knows Akila, he knows her needs, her issues. He knows her heart and He loves her dearly, and He loves me as well. I must focus on this more often.

3 comments:

Kelizah said...

Ahh.. the fighting comment hit home. I said this to my therapist, yes, I have a therapist, even thought I am a therapist. With Lillie, who we and many professionals believe is undiagnosed FASD, I feel like I am constantly fighting. I discussed this at length with my therapist and she being 20 years my senior reassured me that I am a woman of integrity and I will advocate for what is right. To whom much is given, much is required?

I admire you Barb, not for your sacrifices, but for you ability to bring to the light things that more people need to see.

My daughter tonight could not understand why she can't learn to "lap dance" from her 'best friend" who she has known for four days. I Patiently explained over and over that lap dances are not what "normal" 16 year old girls do, but as always, I hit the FASD wall and she felt like I didn't hear her.

I wish there was some way to fill in the swiss cheese holes in her brain, in Akila's brain and in a lot of my child client's brains ...

Kari said...

Sigh.

That's all I can say right now. It's been a tough day.

But I am sending you a hug.

~Kari

Connie said...

I just discovered this blog today and all I can say is "hallelujah!!! I finally found other kids like my 15 year old fetal alcohol affected granddaughter!! We thought she was the only one with behaviours like Akila. We are raising our granddaughter and it is extremely tough. Thank you Barb for sharing.