Some days are hard
CaptainSerious
member
I have so very much to be thankful for and to celebrate. My family is all together, and the boys are truly treasures of my heart. Still, some days, I have a hard time not focusing on my fears.
M's FASD, and what that might mean are always in the back of my mind. I think about the people in society that "snap" and I read things like that "I am Adam Lanza's mother," and I wonder what M's future may hold as he ages. I know the doctor told us not to worry because he's doing so well right now, but I read that in a lot of cases puberty and hormones can change behavior in children with FASD very suddenly.
J's been a handful at home, testing and pushing back at every turn, and now it's started in his afterschool program, too. What really gets me is that he doesn't seem to care when we impose consequences, which makes me wonder where we are going wrong and if he is having a really hard time attaching to us. While I think of RAD, I also know that we joke that he shows OCD tendencies (confirmed by our therapist and his teacher). I even wondered about ODD, since he very simply tells us that he is misbehaving simply because he wants to and doesn't want a boss (and doesn't care in the slightest if there is a consequence). Well, this morning I saw something that might be his first tumor (but for all I know it could just be a pimple), and I googled NF and behavior. What came up was a variable alphabet soup of correlations: Asbergers/autism, ADHD, OCD, ODD, HDD. It seems none of this is written up in the literature, because it hasn't been studied, but there is lots of evidence suggesting that NF is tied with difficult behavior challenges (makes sense, since it is a neurological issue). Great. And then I read that a lot of medicines may have the unintended consequence of making tumors accelerate in growth! So now we have to worry about everything he's taking, too, as he's always on a cocktail of drugs.
So I worry about my boys and where their medical issues might take them socially. I worry about how it's going to impact their everyday lives, aside from the medical ramifications. And I worry so much some days, that it's hard to rejoice in all I do have.
I have a wonderful family full of love. We have a lifetime to spend together, to fill with wonderful experiences. We have the celebration of Christmas and will be surrounded by loads of family that love us. My ski season starts in two days, and we plan to spend as much time as possible enjoying it. The boys are flourishing and our days are mostly good. THIS is what I need to be focusing on, but some days it's really hard.
Re: Some days are hard
((HUGS))
I would take "I am Adam Lanza's Mother" with a grain of salt. I have heard that she posts some pretty awful stuff about her kids on her blog, and she's gotten a lot of criticism for outing herself AND her son.
I know I mostly just lurk, but I felt the need to respond to this post. First off, I'm sorry your having a hard time. I can only imagine what it is like for you to know that your boys may have difficulties in life because of medical issues that are beyond their control.
I just wanted to share an experience that I have had with a boy with diagnosed FASD. I took martial arts for 4 years. For the last two years that I was taking my classes, there was a 15 year old (D) who was in foster care, who was in my martial arts class. When he first started, we were told by his foster Mom that he had been diagnosed with FASD. While I did know that he had some trouble with the written tests we were required to do in order to be promoted, he was able to take them twice, if necessary, and he always worked hard until he passed. Aside from that, he was one of the happiest, most gentle young men I have had the pleasure of knowing. I continued to take classes through my pregnancy, and D was always so careful when we were working together because he was worried about my baby. He loved to do magic, and would demonstrate new tricks for us either before or after class. He could knock out push-ups in a way that would make me green with envy (as I was struggling through mine). When he grows up, he wants to join the marines. I have no reason to think that he won't reach that goal.
I know that every situation is different, but I am hoping that D's story will, perhaps, give you some hope for M.
(( Hugs )) I'm sorry. I don't have any advice, but you are a wonderful mother and I would definately take that article with a grain of salt as PP said. Also there are so many, many people with Aspberger's and other conditions that are not violent in any way, shape or form. All you can do is love your DS and advocate for him, which you are doing marvelously.
I hope you enjoy skiing, focus on you and your boys and give yourself (and your DH!) a pat on the back for being a great parent.
I don't think there's any shame in feeling like your kids can be hard sometimes. I think DS is hard sometimes because he is! And I've never done this before, and you get so overloaded with so much information and a lot of it contradicts other info and much of it doesn't apply to your child and so it's just hard.
It may not be helpful to everyone, but it helps me sometimes to validate my own feelings that a situation is more difficult than many others. Your life as a parent is more difficult than many others'. Still, honestly, you're awesome. It seems clear to me that you and your H do right by your kids, and, whatever hard stuff the future holds, you will just deal with it.
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Someone I worked with on a project about trauma and how the psychiatric system sometimes further traumatizes those already at risk (who has been through it all herself and is now a counselor and advocate for mental-health issues), recently posted this link on her Facebook page, as a response to the "I am Adam Lanza's Mother" piece from someone who has been in the "problem child" position. You might find this interesting.
https://www.madinamerica.com/2012/12/a-challenge-to-i-am-adam-lanzas-mother/
Disclaimer: I am not a mental health professional, nor have I been in psychiatric care, and I don't claim to know the solution, but I do know people on both sides of the system and have been very close to some that were considered "hopeless" cases who went on to become some of the most caring and wonderful adults I have ever met.
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BFP #3: baby girl born 3/5/2014
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Thanks, everyone. Everyting's okay here, and I've been having better days. Like I said, some days are just tough.
I understand that a lot of people don't think that the author of the Adam Lanza's mother piece should have written what she did, but to be honest, it wasn't reading that piece that got to me. It was the fact that I found poster after poster on FASD chat boards that all said the same thing. That they shared the fear of what their children were capable of while in a rage and that they knew they couldn't control them after a point.
But I know that's not our reality. M raged several times a week when he first came home, and we were able to help him process through it and learn to control his frustration and anger, but I understand the out of control feelings of a parent who can't subdue a child in the midst of a rage. And so, even though it's not our reality, I fear that with time and hormone changes and M's realizing his delays, we'll have some pretty challenging times ahead. I hope the doctor's estimations are correct, and we'll not have to face the worst of it, but we just won't know until we live those days.
I was feeling under the weather last week, and found out Friday I have strep throat, so I'm sure that is part of why I was more emotional, too. Things have been better since. It always helps me to see things in the best light when I get the chance to spend more time with the boys. They really light up my days so much, it's hard to worry about the future when our present is so awesome.