It’s raining here today and I kind of feel like the picture above. Dark, dreary and not knowing what’s coming in that tunnel.

In the last 12-18 months so much new information has come my way on FASD. And unfortunately it’s not much good news. 

Let’s recap shall we:
In the last year I learned the average life expectancy for someone with an FASD is 34. ( My son is going to be 24 this year) 

https://www.ncbi.nlm.nih.gov/pubmed/26962962
I learned that the prevalence of FASD could now be as high as 5 out of 100 births. ( as stated in this link https://canfasd.ca/media/fasd-fact-sheet/ 
Some interesting research (at least in my world). They are finally saying FASD is not solely caused by the mother’s alcohol consumption anymore. It can also be from fathers consumption as well. 

http://www.techtimes.com/articles/158632/20160516/fathers-drinking-behavior-may-up-risk-for-fetal-alcohol-syndrome.htm

I learned there are over 400 Health issues someone with FASD could have.(http://www.camh.ca/en/hospital/about_camh/newsroom/news_releases_media_advisories_and_backgrounders/current_year/Pages/More-than-400-conditions-co-occur-with-Fetal-Alcohol-Spectrum-Disorders-(FASD),-CAMH-study-finds.aspx ) 

And on that same idea 
I just finished watching a video ( http://interprofessional.ubc.ca/initiatives/fasd2017/presentations/ scroll all the way to the bottom of the page for this video ) on the survey called “Lay of the Land “by Myles Himmelreich, CJ Lutke, and Emily Travis. 

It starts to scratch the surface of the health issues people with FASD seem to have and not only have but in greater numbers than the general population. Some very eye opening information for sure. I highly recommend watching the video. 
On one hand I am happy people are starting to do the research we need so desperately but on the other it is not a very promising future. But maybe because of all this new information we will have better outcomes moving forward. 
What does this mean for me and mine….. I guess it brings new awareness and helps me to understand my son a little better and definitely gives me new things to pray over. Boy do I have a lot to pray about!

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The smallest of details…

Well Spring has sprung and I am finally coming out of hibernation. I have been on almost a year hiatus due to a few factors.First I kind of felt like my writing was reflecting my own inner turmoil and coming across EXTREMELY negative. For that I apologize wholeheartedly. Sometimes I just feel so beat up emotionally (by others and self inflicted )I don’t always have an outlet to express myself. I am going to try not to allow myself to do that here anymore.It’s been a very long year in regards to my son and also personally. We moved to a new home in a new town in December. We are all still adjusting to that. 

But life is never ever dull here. What I , as well as I’m sure a lot of other parents wouldn’t do to have a boring, normal life, even if it was only for a day or two…. wouldn’t it be lovely….

I could go back over my journal and insert clips here of the chaos of this past year but I think I might leave that where it lies, in the past year. Let’s start with a fresh just happened today event. 

 So As I am sitting in my living room scrolling through Facebook this afternoon my son comes upstairs and declares I’m going to fix my pocket bike and go make some money tomorrow. 

To Which I say “Oh? , Do I need to be concerned? “ 

and he says noooo, 

to which I respond is it above board? And he responds with yes. 

But won’t tell me anything else. So I try the questioning approach…. are you going to such and such a place? And get the Response of yes and then maybe going to another town. Well I am not feeling this is a good idea at all. So I keep trying to get him to talk to me. He won’t, ok nothing more I can do, except pray and hope for the best. He gets ready to go and I said “if I don’t hear from you by midnight tomorrow I will assume you are either in jail or something awful has happened so you best call me or text me”. He says I will let you know when I get where I am going. And off he rides on his bicycle. So a few hours go by and he calls me. He is fuming! Apparently he was stopped by a police officer and man is he angry. He proceeds to tell me all about the stop and then he tells me he refused to tell them where he was going so now they are following him. The marked police car and several unmarked cars as well. 

This ladies and gentleman is his reality. He is paranoid and delusional. Did he get pulled over by a police officer tonight? Only God knows because if you talk to my son you will know he always thinks police are following him. Weather he walks to McDonald’s or to the corner store he is always being followed.

I tried my best to talk him down but there’s only so much you can do over the phone and a few towns away. 

He mentioned bring out “Bobert ” if they continued to harass him. “ Bobert “ is what I believe is my sons alter ego. If he is cornered or put in a place of fear or anger he brings out Bobert. Bobert is a mean, aggressive nasty being. Truthfully I fear Bobert. 

Weather Bobert is just his defence mechanism or a split personality I don’t know. As we have no mental health diagnosis only the ARND in the FASD umbrella.

I said there is no need to bring out Bobert. He didn’t agree. 

So I suggested he try to go to his aunt’s house if it was closer than his original destination and he didn’t answer me, he just said he was going to get off the phone and he would call me or text me when he got where he was going. 

It’s days like today that I understand why I Have almost a full head of gray hair. I mean I know some of it is genetics but I am sure the stress I deal with is a big contributing factor, 

Ok back to the story….. I decide to call my sister to let her know that my son seems to be in distress and may come there. And then I am told that was his destination!!! The whole time. She explains that her husband asked him to come help him tomorrow and that he decided to come for the night so he would be in town to get started early in the morning. REALLY!! What is so secretive about that. He is so paranoid he won’t even tell us something as trivial as he is going to his aunt’s for the night and helping her husband in the morning. Well I was relieved on one hand but also kinda angry too. But as I thought more about it I realized how awful it must be to feel like you can’t trust anyone with even minor details because you live in constant fear. I thanked my sister for letting me know and we both agreed who ever heard from him first would let the other know. Becasue at this point with him being in distress and lacking impulse conrol anything could have happened. He may have went to a buddy’s to hide out, he may have ducked into the woods to hide out, he may have tried to take on a police officer…… you want to talk about worried. I don’t think I can truly describe the worry and fear I face daily living with and caring for my son. 

Thankfully it was her that heard from him first. He showed up there about 20 mins later. 

And I could breath again……

At least for today. But if this was a real time blog you would see I am writing this at 1:50am. I am still on edge even though the immediate danger is over. And most of my worry is subsided knowing he is safe at my sisters, but my body will not let me completely relax. So I figured now is as good a time as any to revive my blog. As I opened with spring has sprung so it’s a new season in the world and in my blog. 

Please feel free to respond to any of my writings. I sometimes feel like I am just writing a public diary as I don’t get comments often. 

Bio vs Adoptive Mom

The battle is real…….. Why do we feel the need to have labels like Bio or Adoptive Mom. I mean are we not all Mothers to our children. Are we not all striving for the same things to love our children unconditionally and help them make it in this world. Why does it always come down to Bio vs Adopted Moms? 
Is it because one name has super hero status attached to it and the other has blame and shame attached to it?
I mean why do either of those names deserve to be better than the other. We are both Mothers looking for the same outcomes,
I dream of a day where we reach the point where it no longer matters who is or was the “womb home” of the child. A day when all mothers of FASD children can plainly state this is MY child period. And not have to worry about the shame and blame. 

You know like parents of children with ANY other disability. People don’t shame and blame parents for having a child with ANY other disability so why do they do it to us?
Oh right it’s because this is the ONLY disability directly caused by the bio parents of the child . I say parents because there are new studies that point to Dad not being completely off the hook for this disability https://www.sciencedaily.com/releases/2014/02/140214075405.htm 

So does that mean the world will start hating the bio fathers too. Or will it always be only the Mom is the evil awful horrible person.
That being said it’s also true without Bio moms, adoptive moms would not have a child to love so it’s a double edged sword. Are we evil or are we the ones who helped others fulfill there dreams? I can’t see how we can be both. 
I’m sorry if I upset any of my audience today but this topic is very real and a sore spot for me. 
I welcome feed back from my readers Good , Bad and otherwise. Let’s hash this out. Let’s end the stigma. 

It boils down to we are all Mothers who love our children.

Let me know what you think.

Sorry for the extended break…..

So life seems to have a way of getting in the way of the things you want to do with your time. In the past month and a bit  I have been dealing with some heavy stuff but things seem to have finally gotten back to a semi normal state. Anyway thank you for waiting patiently for my return. 

I was hoping to have posted again last month for mental health awareness month but as I mentioned it has been a bit of a crazy month.  I am choosing to post about FASD and mental health even though it is not mental health month any longer, Because as most of us know FASD and mental health seem to go hand in hand. Statistics I have read state up to 90% of people with FASD have some form of mental illness ( a leading secondary disability…..that others say is not so much a secondary disability as a primary. The verdict is undetermined).

Some of the Mental health problems listed were :

Alcohol abuse

Substance abuse

Antisocial personality disorder

Anxiety

Psychosis 

Depression

With depression and Alcohol/Substance abuse being the two highest ranked issues. 

 My son deals with a minimum of 4 out of the 6 listed and I am not sure that’s all. Those are only the ones I personally have seen him struggle with. 

I think one of the biggest barriers  for people with FASD who do have mental illness is the fact that they don’t have good results from traditional therapy methods. Of course it makes sence when your brain is wired differently that you would need different remedies. Unfortunately society has not researched or come up with strategic methods to help work with those brain differences yet. There is a movement happening called the Neurobehavioral Approach. Diane Malbin wrote a book called ” FASD: Trying differently rather than harder” and it is based on this approach. I have read the book and think it is wonderful.  It’s alittle hard to find but if you can I highly recommend reading it. 

Here is a link to a good article on Can’t not won’t an idea presented in Diane’s book.

http://www.fasdwaterlooregion.ca/about-fasd/thinking-differently

Also Diane has her own website you can find here 

http://www.fascets.org/
I will leave those for you to chew on for now and hopefully will be back sooner than later.

The Monster

As a Bio-Mom I have found myself the target of a lot of anger, blame and even hate. First and foremost my own (Yes, I absolutely have anger at myself and blame and self hatred), but then there’s the world’s view of who I am, and what others perceive me to be. I am lumped with all the other Bio Mom monsters who gave their children permanent life long brain injury. We almost always are accused of being child abusers among other equally damaging statements. 

It is a horrible thing to know you caused your child permanent life long brain damage, and I honestly don’t think most of us labeled “monsters” did this deliberately, I know I sure didn’t.

Over the years I have let these hateful things have a place in my heart that they never deserved to have.

They do not and will not define who I am any longer.

I will no longer let others opinions of me dominate my thoughts and reality.

With that being said, I want others to know that I understand why they think that way, and I understand they need someone to blame for the horrible, awful situation they find themselves in raising these children that are seriously damaged by the bio monster, because I find myself in that place also. I blame the bio monster 100 percent! But unfortunately for me, that monster is me! 
I am the monster at the end of this book! (As Grover once said)

So please try to think about us monsters as maybe human beings who made terrible mistakes, and not so much monsters who deliberately tried to ruin their children’s lives or yours.

FASD and the Brain

Today I want to discuss the brain damage my child has. I know this topic is covered in a lot of places in the technical specifics and here is a fantastic reference (http://www.come-over.to/FAS/FASbrain.htm) but I don’t see much in the “everyday living” kind of stuff covered. And by that I mean the reality, and how it plays out in our everyday lives. In the last 5 days, I have had two circumstances specifically where people who think they understand my sons condition, say things to me that guarantee me they have no clue what the truth is. 

Point one: I was told flat out the doctors lied to me about his functioning level. They said there is no way he could be that damaged, He thinks of things no one else considers and you don’t give him enough credit. 

Point two: Oh he can drink a few and be fine, it’s when he drinks too much that his FASD kicks in. 

Are you kidding me?! In both of these situations, both of these people honestly thought they were right and they both believe they know something about FASD. But if they did, they would know that in situation number one just because some of his brain doesn’t work right doesn’t mean he can’t be brilliant in other parts. It’s like if I sprain my ankle, yes my ankle is out of commission but my leg is still functional. My knee will still bend and my toes still wiggle. Also see ( http://come-over.to/FAS/TriLevelMan.htm)

Point number two…..No he can not just have a few, because a few affect him more than a normal man.

The brain of the person with FASD functions similarly to the way the person who is inebriated functions. For a person with FASD to have one drink is like having one drink after having already had 3 drinks, and has a greater impact on judgment. One or two drinks for a person with FASD is the equivalent of a six-pack of beer or an entire bottle of wine. (taken from http://www.come-over.to/FAS/FASDdrink.htm)

FASD is not something that magically turns on and off at a whim. With or without a substance involved. 

The brain is a complex organ. Period!!! 

So stop telling me I don’t know the truth. Because I live with it daily and have for 22 years!

Until you have lived with this person day in and day out for 22 years and been the one who has had to deal with the unpredictable behaviours, the paranoia and delusions,the drunken rages and destructive behaviours, or having to bail him out of jail repeatedly………or you simply get some true education on the issue.I really don’t think you have a right to say anything about this topic. Especially to me!! 

I have never been and will never be perfect and I have most definitely made mistakes with my child’s upbringing but I have always tried my best to do the best I could in the situation we were in.

Rant over.

Impulsivity

Oh, the stories we all could share regarding this topic and our children, but today I would like to focus on one of the stories from just this week regarding my son and impulsivity. 

Two days ago I went out to the store and then to McDonald’s to grab take out coffee with my husband and my daughter. My son often doesn’t hang out with us as he really doesn’t like car rides (he is 6 foot 5ish and we have a really small car), anyway we come home and he wanders in to collect the coffee we picked up for him. As he is standing there he shares that he had a run in with a grinder (OK, I am thinking, “What on earth were you doing with a grinder and what kind of ‘run in’?”). I, of course, start looking him over and immediately find he has a huge burn hole in his vest. So I asked what happened and he replied with something along the lines of ‘Well, I was using the grinder and started to smell something off but didn’t really think about it much, then it got worse and I started to feel hot, and that’s when I realized I was on fire.’ (He burned not only through the vest but his inner jacket, and that melted into his hoodie beneath before he realized he was on fire!!) Then I asked how he put it out and he said “my hand.”

  
I don’t know about you but I can see clearly that this 22 year old man has impulse control issues (and a lack of forethought) that are definitely caused by brain damage. It’s really sad as he presents quite well, and because of that most people don’t see the disability, only the poor behaviour. It’s interesting to me that I have been walking this road with him for 22 years and only knew about FASD the last 13 of those years, but he never ceases to amaze me with the things he ends up doing or saying. There are very few dull moments in my house, and sometimes I feel like I am constantly putting out fires (figuratively . . . or at least most of the time . . .) but this has become my normal. Do I feel like I am a sane, whole, healthy person? Absolutely not! But I do the best I can living in this situation neither one of us chose. What  I can chose is to love him no matter what!