The heart thrills and heart ache of having a child with FAS/FAD

Denice - posted on 02/09/2013

Hello FASD Dad,
Mom or dad we all care about our children and want the best they can have. I wish I could give you the answers you seek. My son is now 18yrs old and I'm still wandering around trying to figure out what to do to help him. Only now the difference is that I have no right to know what is going on in his life unless he wants me to know. I have been to every professional I can find to ask for help, every agency, group, government organization that I thought could, should or would help. I have found no one that can or will help. The moment you mention FASD they walk away (sometimes run). They all believe what we refuse/don't want to accept. FASD cannot be changed. The injury the brain suffered in the womb cannot be undone. No one wants to deal with the ups and downs of the emotional stuff, the tempers, and the blow ups, the unexpected holes in the wall, foul language and inability to learn from consequences. They can all walk away because it isn't their child. We find ourselves stuck with nowhere to go, no one to help and no one with any answers. From what I can find there are two agencies: One for people with Mental Health Issues (Canadian Mental Health) Second; for people with Intellectual Disabilities. (IE Down Syndrome etc). My son doesn’t fit either, he is considered Brain Injured and therefore falls between the cracks. I don't know what the answers are. I don't even know how to get my now adult son to move out so I can properly care for my other children in the home. He is now into drugs, alcohol and his friends aren't the kind you want to invite to dinner. Many of these kids end up refusing prescription medication instead deciding to “self-medicate” through street drugs/alcohol. And even though he is 18 years, really he is only about 14 years mentally and his budgeting is non-existent. Every day I wonder if today will be the day I receive that dreaded phone call, my son has been beaten, or pick up by police or overdosed. Every time he leaves the house I am afraid of what will happen, but at the same time I am afraid of what condition he will be in when he comes home. How do I as a parent send him on his way when I know he can’t take care of himself and there is nowhere for him to go and no one there to help?
Parenting the other children is certainly a challenge because I do have to look the other way at some of my son's behaviour. If I disciplined everything that deserved it, he would never be “ungrounded”. I have to look the other way sometimes, but then the other children want to know why they can't get away with things, why do they always have to do their chores when he doesn't? Trying to explain that if he doesn't want to do his chores forcing him only causing misery or temper tantrums with foul language and aggressive actions (IE Broken window, dishes, hole in wall, etc.) it just doesn’t always work.
In regards to separating the disability from the simple teen behaviour, that is a daily struggle. To be honest I think I deeply want to believe him- that he didn’t do it on purpose or that he really did just get caught up in the moment- I convince myself I do believe it. But honestly, my husband is much better at knowing the difference than I am because he is detached from it. He honestly does care what happens but he doesn’t parent out of guilt because he is my second husband and his step-father giving him a much clearer view than I. He can see it for what it is and he tries very hard to explain it to me. Some days I'm willing to listen, some days I'm not. Co-dependency is a huge problem. As parents we can become overly involved and actually start creating problems for our kids instead of helping them by letting them face natural consequences. Sometimes the best I could do for my son was to listen to someone else that I trusted for their opinion. I don't always listen, but many times I later find out they had definite truth in what they were telling me.
Another area that I wish I could have done over is my other children. I raised 3 boys on my own and it is my middle son with the FASD. The difficulty was that he was always in a school with one or the other of the boys. Teachers and students used to call on the other boys to verify stories, ask questions about their brother, check in with, etc. This created a lot of problems at home because my middle son had resentment for the others for what he considered "ratting him out." The other boys had resentment toward him for being put into a babysitter position. Even now my 17 year old son feels like he has to take care of his 18 year old brother. I tell him constantly that he is not responsible for his brother. But I really wish I had started that way back when they were little. But I didn't know back then I was dealing with FASD, I knew nothing about it. All I knew was I had a child I couldn't handle and no one could seem able or willing to find any answers or help. I did the only thing I knew how to do with the information I had at the time. If I had it to do over I would certainly do some things differently but I cannot live in the ‘what if’s’ I have too much of the ‘right now’ to handle.
Like I said I truly wish there was something I could offer you in way of answers, but honestly I have yet to find anyone out there that is willing to work with our kids. What we really need are some good people who are willing to start something for them. Helping to educate teachers, professionals, etc. about our children, our lives, our struggles, and the daily struggle our children must face through no fault of their own. Isn’t it enough that these kids have to live every day struggling against their own brains? Why does society have to dump more on them by not offering any supports or help?
I have found these websites (In Canada, I am not sure where you live) I’m not sure how much help they are:
http://www.phac-aspc.gc.ca/hp-ps/dca-dea...

http://www.canfasd.ca/

http://www.ccsa.ca/Eng/Topics/Population...

I am currently contacting some of these agencies to ask them about services and support for these kids as they become adults. As I get any informative or helpful information I will post it here.
Good luck and just remember there are others who do understand and care. If you wish to contact me privately my email is denicemac@gmail.com

FASD - posted on 02/06/2013

Hi everyone. I found this thread via a Google search. I am a single father with a 16 year old daughter with FASD. I know that this is a "mother" website but each of your posts are very similar to my situation. As you mention, there is not a lot of information out there, or support (that I have been able to locate). I have many challenges with my daughter's disability and also many concerns for her future. In some cases I just do not know what to do. School is a nightmare. Two other siblings who are healthy that are understandably having challenges with her disability. I am very concerned about her future. I would like to just hear from other parents of FASD children on how they handle the disability. I do my best to ignore the horrible behavior that comes with FASD but I really have a hard time trying to separate what is FASD driven and what is just bad behavior. Needless to say, it makes it a challenge to parent not only my FASD daughter, but also my other children. Anyway, thanks for reading.

Denice - posted on 12/10/2012

Hello Wendy,

I still have any messages forwarded to my email. So I received your message. A year, a month, a week, it really doesn't matter when dealing with a child with invisible disabilities. The issues keep coming. My son is now 18 years old and we are into a whole new set of rules, problems and challenges. He had to move out of the group home because he "aged out". He can not live alone due to his disability, but no one will help him. The system just let the calendar tick by knowing that on his birthday he wasn't going to be their responsibility anymore. Eventually it always falls back to me. Unable to live on his own, yet disruptive to our whole family. I ask myself daily what am I suppose to do... keep him and help him the best I can even though I know he only listens to me when he wants to. I really do not have any control or influence over him. He can and does agree with everything I'm saying BEFORE he walks out the door. But as anyone who has someone with FASD knows "out of sight, out of mind". He will go with the flow and my words are no longer in his head.

My other choice is kick him out. I know full well he is unable to provide for himself safely. But then again I am not able to keep his safe either when he takes off whenever he wants. He has very little understanding of money and value. He can be ripped off easily. He does not know how to take care of himself. No budgeting skills or understanding. He would buy a pack of cigarettes and coffee before buying food. He likes the expensive stuff like a $40 hat, instead of light bill. So I guess ultimately my choice is who do I sacrifice? My son with FASD or everyone else in our home. That is the choice we come to. There are no services for FASD. As soon as you tell the agency or residence or whoever you are talking to the diagnoses they give another number to call and say they don't have the resources to deal with those issues.

The biggest challenge is the co-dependency we face. Especially as parents. Just when I can't take it anymore and I'm ready to show him the door, he flips and becomes caring, charming, compassionate, kind, helpful and truely terrific guy. Then I think, "Ok, I guess I can do this one more day." We float along for a while with things going well. A few things start to happen and the cycle begins again.

One of the biggest things that bothers me is that my other children have a distorted reality. What I mean by that is my son with FASD does some pretty outrageous stuff. Aggressive things. My other children, even myself at times, will say, "That's just him being him."

I worry that it will leave them vulnerable to other relationships. Accept behaviours as normal that are NOT normal nor acceptable.

I really do understand the heartache and pain or raising a child with FASD. If you wish to chat further or would prefer some private chats. Just let me know. I can send you my private email.

Wendi - posted on 12/10/2012

I see that this post is over a year old, however, this really hits home with me.

My adopted son is now 12 years old. And his transition to middle school has been the most difficult yet. Like you said above, he is sweet, funny, charming, adorable, lovable.. willful, impulsive, has absolutely no understanding of cause, effect and consequence. We will have an absolutely horrible week, calls daily from the school, bus driver and after school program. But then Saturday morning comes and he is in an amazing mood that tells me we can conquer this and move on into a fresh new week. His daily challenges put a strain on my current relationship. My partner has a difficult time remembering this normal looking child is brain damaged and really does not try to be difficult. He has no filter from his brain to his mouth and will say and react exactly how he is thinking. I also have a daughter (11 months younger) who is advanced in all the ways my son is not. We commonly joke she is the "little:big" sister. She is responsible for keeping an eye out for her brother when I am not around. It is not fair to her that she has to babysit her older brother, but she loves him unconditionally and would have it no other way. It is difficult to find a support group around here in my small town. I have scoured the internet but most of the posts are years old. If anyone is still reading these posts, I am always looking for someone going through the same thing, up for some venting and finding humor in our day to day struggles.

Denice - posted on 08/31/2011

Well we have been to court. My son has agreed to remain living at the group home. It is only for 3 months at a time due to contracts, but he is doing much better. The structure, changing of staff and regular routine really help him. Something I was never able to fully provide. Of course having a true diagnoses would have helped immensely as well. I would have understood more what does and does not work for Dustin.
Even though Dustin is there and it is better for him, that doesn't mean it was easy. Signing those papers is like tearing out your heart. No one really understands that. Some people are so quick to judge, comment and assume they know what your life is like or what you are thinking or feeling. Unless you actually sit at that table with Social Workers, your child and a pen in hand....you have no idea how heartrending it is. I know all my son wants is to be loved and accepted just like everyone else. However due to the choice of a birth parent he will never be able to live a so-called "normal" life.
Even now we face daily issues still. His birthday is coming up. What do we do? How do we celebrate? After that will be Thanksgiving (that one isn't as hard because lots of people just come over for meals and hang for a bit) but then there will be Christmas. That will be hard. Through it all remains the thought that because he will be 17 yrs in two weeks, he has the ability to walk out of that group home any time. We are unable to allow him to live here any longer because of his risky behaviours and anger outburst that put the rest of the family at risk. But what do you do? If his behaviours become difficult at the group home, they can and will terminate his agreement and send him back here. He knows this. They always tell the children that! So once again if he is "bad enough" he gets what he wants...sent back to me. What a lovely screwed up system we have. The kids keep getting what they want with inappropriate behaviours and we the parents keep becoming the safety net whether we have it in us or not. There has to be a better way. Somewhere these kids can be taught how to control their impulses, how to live in society. But how do we help them when the law says they have to right to refuse, yet lack the intellect to know what they really need? Do we just keep becoming the safety net?

Denice - posted on 08/12/2011

My son has returned..sort of...he broke his probation by missing curfew so we had to report it. The upside to that is the police were looking for him right away. No 24hr wait time. He was found and after yet another court appearance he is now living in a group home. He has only been there 2 days. Only until his scheduled court date coming later this month. At that time a decision will be made whether or not he goes to youth center or back to the group home. We have made it clear we can not have him return home. We are unable to keep him safe. He runs away at night, escaping through his window, he leaves during the day and I have no idea where he is, who he is with or when he'll return. If we go looking for him he is no where to be found. He is officially diagnosed with FAS and ADHD. Unfortunately he didn't get these until much later (aged 14yrs) because everyone "forgot" I adopted him and assumed I would never drink when pregnant. It means more court. Another day spent sitting around waiting for others to decide what's going to happen to our lives. So exhausting, so draining, embarrassing also to be sitting in the courtroom, having police come to your door on a weekly bases...I love my son, but how much can be expected? I wish there was something else for these kids. Why do we have to wait until they get into a lot of trouble before something happens to help them. And why does it have to be the justice system instead of support services? With all the kids diagnosed with FAS why isn't there more out there to help these kids and families deal with these overwhelming issues. Sorry for venting, but when you are living in this day after day and still trying to find someway to give the other children in the home some kind of "normal" life....it can feel completely overwhelming. We still don't know for sure what's going to happen later this month. We don't know for sure if the judge will release him back to us. We don't think so based on all the professionals feedback being given...but we won't know for sure until we appear before the judge.

Sherri - posted on 08/09/2011

I am hoping that your son has come back home safely. I cannot even begin to imagine what you are going through and I am even more scared that I will be in the same place in about 12 years. My adopted son is FASD and is doing pretty well for the most part - we are able to handle his challenges so far. Teenagers are difficult enough even when they don't have FAS or other challenges. Hopefully there will be more supports out there if we keep fighting. My sons school doesn't even recognize FAS as being something that requires an aide so that's my next fight. Good luck with your son and I hope that he comes home soon.

Stephanie - posted on 08/08/2011

I am soo sorry. My heartand prayersbgo out to you! I hope you find him soon.

Denice - posted on 08/07/2011

Hi. Never worry about writing to much. When our hearts are heavy for our children, we need to do what we can to help us deal with it and find ways to help them. I so understand about your son wanting to "fit in". My son is almost 17yrs now and he is still trying to fit in. Unfortunately he always seems to find the wrong people to fit in with. Over the years my heart broke daily for him. Still does!!!! Currently I sit here not knowing where my son is...he left home 3 days ago. After lengthy involvement with the police and spending almost every Monday in youth court for the summer... I hit my limit. This week we had more problems. I had to tell him he needed to go to the group home. We have been trying to get him to go there for awhile. Had been there before (until my ex-husband thought he would play Robin Hood. Took him out, kept him 18 months then sent him home to me without notice 2 months after his 16th birthday! ) I'm a bit stressed right now, so will keep this short. My son left home Wednesday at lunch time and I haven't seen him since. We have had a few texts back and forth, but very scarce especially with the information as to where he is and who he is with. I sit with my stomach in knots. I am worried about my son, yet at the same time the household is calmer. My other children are more peaceful. And I feel guilty for that. I can't handle him at home and still keep the other children safe, but I don't want to see my other son hurt or in danger. It is a terrible place to be in. How can you keep them all safe when one causes the others to be unsafe? I truely wish there was more support for these kids. My boy needs a place with structure, supervision (24hr) and guidance. But what he's going to end up with is jail, because we don't have anything to support him to stay safe. For kids between the ages of 16 to 18 there is serious lacking of services. They have all the rights, we have all the responsibilities. Whoever decided a 16yr old could make these kinds of decisions for themselves should be made to work (free of charge) with all these children. Clearly they don't have any children of their own. Guess now it is my turn to apologize for venting. I am just so frustrated after spending all these years fighting for my son, only to have him end up exactly where I didn't want him!!! And this is simply due to lack of understanding for FAS and available services for them. Not to mention support for families going through this.

Stephanie - posted on 08/04/2011

Hello! I'm going to apologise now for how long this response is. I am so relieved to hear that i'm not the only one overwhelmed with this exact same situation i'm in. We have family who know he's diagnosed, but they only half believe it. They don't spend day in and day out with what that diagnosis means. I haven't had the opportunity to vent with out feeling like i should just "suck it up. he's boy. that's what parenting's about".
It's healing to know someone else out there knows exactly what i'm talking about.

I couldn't stop reading you words to my boyfriend!! I was relieved and a bit excited that someone else knows exactly what i'm going through.
We have two boys. My oldest, (not his birth mother) is 8 and has fetal alcohol syndrome, but it's not just the fasd. theres the adhd, zero, ZERO impulse control, sensory integration disorder, lack of social skills, language delays, and developmentally&maturity wise, he's behind. So, through the eyes of others, mostly the kids his age, he's "different". He just wants to be involved. My heart breaks for him. He is such a happy, caring and sweet boy, he is completely unaware.
An example: We recently had an outing to the park. It was a georgous hot sunny day out so it was packed. A group of kids playing tag. Well, my son still doesn't have a grasp on the rules of the game. He was having such a blast tagging anyone he could catch up to. The joy on his face was, very satisfying. Just like you said, you can't help but join in on that joy! Well a few kids tagged later, they came up to tell me they didn't want him to play anymore because he was ruining their game of tag. :-( it didn't phase him a bit though. he just went right on playing. I pray he never loses faith in people.
I know exactly how you feel with the listening issues. My boy is the exact same way. I don't know what kind of discipline or quensequences to use to make a difference.
One of the top stresses is the toys being left out. NO MATTER HOW MANY TIMES A DAY WE TELL HIM, "PUT 'EM AWAY WHEN YOU;RE DONE" HE WON'T CLEAN UP!!!!!!!!!!! We eventually decided that if he didn't put them away, then we would throw them away. I thought he'd eventually realise that he's losing his toys, it was make a little bit of difference. It was over two weeks of tossing toys. No lesson's were learned. Well on his part. It just caused more tension than needed. He was getting more upset with us the more toys we tossed, and we were upset our idea didn't work. we are completly lost on what to do to teach him actions have consequenses.

Like you, i have done my homework. i've read the books, done hours on hours of searching the internet, and i've also taken a couple classes at the college so i can be the best mom i can be for him. What i've gathered from all the information, is our son will most likely need to live at home, even through adulthood. Adults with fasd are more successful in their day to day lives if they have a strong supportive family at home. My boyfriend and i worry about him getting into trouble with the law later in life. All we can do is give them a safe, loving, sturctured foundation to grow into the best person he can be. I remind myself often, you're doing you best, and nobody can say otherwise.
Thank you so much for posting your story!! I don't feel so lost anymore. You've made my week. :-)
I'm a stay at home mom, so i have time if you want to chat some more.....
Steph

Denice - posted on 06/25/2011

Thanks for your note. I too believe we shouldn't have to wait until our kids screw up enough to get into the system or be arrested in order to get help. Our society seems to be so stubborn to accept invisible disabilities. Especially ones involving behaviours that don't fit what they consider to be "normal". I get so angry that we seem to be a RE-active society instead of a PRO-active one in which we help our kids BEFORE they get to the point they are being arrested. Not to mention that for FAS kids like my son, that are also diagnosed with little to no impulse control, that doesn't go well when someone tries to grab, restraint and confine. Maybe he is being questioned for a minor offense, but by the time they get him to the car or station to do that, he could be looking at much more severe offenses if the officer doesn't understand FAS and Oppositional Defiance Disorder. Faith is the only thing that has gotten me this far. When all else fails, He never does...
I have tried couselling for my son, but I have found that all it does is teach him what other people are looking for him to say. He doesn't really seem to change his thinking, just his responses. It is almost like it teaches him how to tell stories better. I know that sounds weird, but I just find days following his counseling sessions he is more difficult to handle and much more verbally abusive toward us.
I'm new to these chats. I'm not sure what is private and what is public when it comes to the chats...if you can tell me how you use private chats that would be great..thanks

Clara - posted on 06/12/2011

Hy 10 fas is now fighting in school, she has been suspended twice,the school doesn't understand fas/or any other mental needs of children,let alone the teachers are not trained to teach or interact with fas, My child is in therepy has been since age of 2, but there really isn,t anythink they can do,I really feel for you and your family,I don't know where you live, But I have contacted Dr.Mark Sloan he is the best!!! to see if he can't get something set to help teach these teacher how to teach children with special needs/exspecaily childern of fas. Google fas/rage disorder,it will bring some light to your situation. haveing your son arrested is not what he needs, your so called professionals leaves alot to be desired!! God Bless you and I checked my email everyday so if leave a respones i will get it.