This is rambling post. I’m sorry about that. I’m also sorry if it sounds like a long complaint. I hope you know that it’s not. I wish it were funny, but it’s just not today.
My son, Little B, who as most of you already know, has atypical autism, Pervasive Developmental Disorder, Autistic Spectrum Disorder, or whatever we are calling it today, is just a unique, loving, strong-willed child, and at home we have learned over the past 3 years or so to walk on eggshells to keep him satiated in order to avoid the complications of a total meltdown. This is harder to do during school, when I have to send him off into a complicated and unpredictable world, which results in numerous bad days and a few downright awful ones. The summers are easier in some ways, because school is out, but harder in others, because he gets bored. And boredom leads to problems too.
So, most recently, he’s been going to “visit” a newfound friend of mine once a week or so. She’s a teacher and a mother of two, one of whom is a 6 year old boy with Asperger’s. I can’t put Little B in a daycare situation…he’s just not equipped to handle it, and it wouldn’t take more than a day for them to call me and pick him up. I know that. So, this seemed like it would be a good opportunity to give him something different and fun to do once a week…it would give Teen C and Big E and Little A a little break…and would all-around be a great thing.
Little B ABSOLUTELY LOVES IT. It’s all he talks about lately. She’s a God-send. She’s helping with figuring him out and coming up with potential solutions, and research, and even finding potential sources for therapies, etc.
Little B has decided that he needs to all but LIVE WITH HER. Don’t get me wrong, I’m not jealous, or anything like that. It’s just that obviously he can’t be there all the time. And I can’t make him understand why that’s not an option. And he’s really sort of obsessed about it. In fact, when she dropped him off yesterday, he threw a ginormous tantrum, tried to get back into her car, and she had to literally drag him inside, kicking and screaming, and close the door. Once inside, he apparently punched Teen C in the stomach and flailed about like an animal for some period of time. Even after the tantrum was over, nearly every waking moment since he’s asked when he’s going back, demanded that I bring him back, and begged that I call her to find out when he could go back.
Well, I just told you the ugly. And it’s really really ugly. His problem with transitioning from a “fun” thing to a regular thing is so bad that we had all but just stopped doing the fun things. And that’s hardly fair to anyone. I’ve got to come up with a way to make this better. Not just with his new visiting routine, but in general.
There are a few things that I would change about Little B were I offered the chance to do so. I’d do it without a second thought. There are so many more things that I wouldn’t ever change. I think you understand what I am saying. It’s just bittersweet. It’s like trying to hang your hat on the silver lining. You have to try really hard.
My greatest fear is that we won’t find the right therapy for him, and that as his classmates continue to grow and mature, he will stay “stuck” with the emotional reactions of a 2 year old (and I’m not being dramatic here, that is exactly where he is emotionally) and that, in and of itself, will make it worse, even if he stays the same.
I can’t begin to imagine how difficult life must be with a more severely affected child. The child that doesn’t communicate much or at all, the child you can’t reason with, the child that has severe learning disabilities. But what I do know is that Little B’s strengths are misleading to people. The fact that he communicates so well and expresses his thoughts so well give people the impression that his “behaviors” are strictly by choice. If you don’t know him, you expect him to be above average for his age. And in so many ways, he is. When he breaks down, at first glance it appears to be just bad behavior, and onlookers think that he is just being oppositional. Therefore, the stares we get are judgmental. The phone calls or the face-to-face conversations are sometimes dripping with assumptions that I’m a bad parent.
I have four children. I’ve been doing this a long time. And I know my son. He simply has no control over his emotions. The best way that I could explain it to you is this: It’s like normal, random disappointments, things that would make a six year old say, “Aw man! I really wanted to go swimming today! I’m mad that it’s raining!” and then go on with their day, send Little B into a regressive emotional state that he can’t control. Even his happy moments are disproportionately happy. He’s not just happy. He’s elated, and he gets wound up and excited and might scream or squeal or squeeze something or someone too hard. Do you see? And this is the core of his problem, and it branches outward from there, and affects everything. The triggers could be anything from what tv show is on, to what order things are put on the table, to if someone is talking when he wants to be talking….and the list goes on and on and on.
Please pray for him and our family and all of those kind souls who have reached out and offered a helping hand, a listening ear, or even just a shoulder for me to cry on. And many of you are reading this right now, so I would say clearly and loudly and succinctly here: THANK YOU.
This is going to be a hard, long fight. And I just hope that I can meet all of his needs while still meeting the physical and emotional needs of my other children.
Also, say a special prayer for Teen C, who is a little (okay, more than a little) upset with me that she is “stuck” at home taking care of this impossible child an average of 3-4 days per week. She has a good understanding of how to best handle him, but that doesn’t make it easy, by any means. I feel guilty about this every day when I walk out the door to go to work. But I don’t really know what else to do about it. If we had a million dollars, or even just a little more than what we do have, then maybe things would be a little easier. But we are what we are and it is what it is, and we are all just going to have to do the best we can to get by.
I think that was a prayer.