A soft place to land or a hard place to live?

Home is really hard for Finn.

Those are six of the most heartbreaking and truthful words I have had to write.

Finn’s not like other kids. That goes without saying. And it’s not like he doesn’t like home or even find comfort from home, but home, for Finn, is like sitting in front of a high speed fan on a hot day. At first, it feels good and it’s comforting, but eventually it gets really annoying.

The part that’s really hard for me, besides all the chaos that Finn having a hard time at home brings, is the fact that Finn doesn’t have ANY trouble at school. He’s a completely different kid. He’s jovial and affable. He’s compliant and ingratiating. His teacher claims to almost never have to redirect him beyond what is age-appropriate for a 2nd grader. It blows my mind. Because, at home, I have to ask him no less than ten times to stop wrestling his brother and get dressed. And I can’t even tell you how many times (an hour) he gets in trouble for growling at the twins or just plain making them cry for no reason. He won’t share. He’s totally rigid and unrelenting.

Now, I know the me-of-3-years-ago would have given my left arm to have Finn where he is at school. He is a serious rock star. He has friends. He’s on grade level (or above) academically. It is picture perfect. For real. I’m not bragging. I’m, as Momastery would say, wearing my perspectacles. Only someone who has walked in my shoes can have the clarity, perspective and gratitude for these gifts as I see them. And I know they are gifts.

It’s just that I thought that as Finn got better at school, he would also get better at home, but that just isn’t the case. He’s like Dr. Jekyll and Mr. Hyde.

Some mornings he just wakes up on the wrong side of the bed. At 5:30. And screams.

And some days, despite having created a schedule for him and “steam rolling” him with the exercise ball, he still throws himself on the ground when we tell him his (scheduled) Wii time is over.

And I get that transitions (even scheduled ones) are hard, but he would NEVER do that at school. In fact, if a friend from the neighborhood walked in our house while he were throwing a fit on the floor, he would stop– immediately. I’ve seen it happen.

So where does that leave me? Being played? Almost positively, absolutely. But it doesn’t change the fact that my boy hates being home and he’s making it miserable for the rest of us.

I’ve tried everything– positive behavior supports (or as we seasoned parents call them “token reward systems”), schedules, social stories, at-home ABA therapy, pragmatic speech therapy, OT exercises, “if / then” statements, clearly stated rules and expectations, ignoring the negative behaviors, punishment… you name it, I’ve tried it.

I am at a loss for where to go from here.

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9 thoughts on “A soft place to land or a hard place to live?

  1. My son is much younger than yours…he’s only three right now, but I have the same issue. He’s been in preschool for about 8 months (first regular preschool and now special ed preschool). My child has never had a tantrum at school or in therapy, ever. His teachers and therapists tell me he’s the sweetest, most cooperative boy they’ve ever met. I don’t know who they’re referring to, because when at home my kid raises hell like nothing I’ve ever seen.

    What am I doing wrong? People keep telling me that it must be my parenting if he can hold it together every place else. Maybe our kids just need a lot of structure, and that’s why they do better at school and therapy? I’m not really sure what the problem is, but I do get awfully tired of being blamed for it. God I have never tried harder at anything in my life than to be a good parent to my autistic son, but it doesn’t seem to be paying off much.

    • I totally get where you are coming from. Believe me, it’s not YOU!!! But I know what it’s like to 2nd guess yourself! Finn used to have a really hard time at school (throwing desks, pulling kids’ hair kind of hard time!) That’s why I said that about the gifts, but sometimes I wish we could get a little of the school Finny! People always says it’s bc he holds it together all day at school and that home is “a soft place to land,” but this landing strip is hurting! Thanks for commenting! I guess we do as we always do: keep on keepin’ on, right?

  2. Wow! This sounds like my little guy too. Unfortunately he isn’t even in preschool or daycare anymore because we have a Nanny – now he just raises hell all day, every day. We’re just at the beginning of our road with ASD diagnosis and treatment, so I’m hoping things will get a little easier (or at least easier to understand).

    • Gennie, I hope this isn’t the first post of mine you are reading. I’m not usually so hopeless! We’ve struggled a lot to get Finn where he is, and like I said in the post, I see those gifts for what they are. But, right now, home is really hard…
      Ok, I just had to say that. Fear of judgment is a bitch.
      I read some of you blog posts and followed you. You are a great writer. I am interested in reading your journey with your little guy. The beginning of a diagnosis is very confusing. I wish there were an easier path. As my friend (who I wrote “Dear friend whose son is newly diagnosed with autism” for) and I were just saying the other day, there is no way to make this road easier. You have to walk it on your own. Knowing you are not alone helps, but your kid is not like every other kid on the spectrum (and sometimes that’s good to remember and sometimes it’s scary). But some things you have to (and want to) learn on your own. No matter how good someone’s advice is, you have to just learn as you go.
      Thanks for reading and commenting and if I can help you in anyway, please reach out.

      • Thank-you! I have to say that the best thing for my son is that I knew the signs. For years everyone told me that I was over-reacting and he was just being a normal, hyperactive little boy. But I pushed everyone, even the doctors, because I’ve seen so many people who fell through the cracks and have to pick up the pieces after years of struggling with no answers. If I was never so informed or never advocated for him like I did, he would have been the one to be missed. As difficult as this diagnosis is going to be, I am so relieved that all my work and advocacy has paid off! I am also lucky that I am “part of the system” and have good access to people and supports 🙂

  3. I have no words of wisdom here, only great big hugs for you. I know you have guidelines and structure for Finn; have you asked him what would help him at home to make it more of a school-like environment. Sort of a “help me help you” type of conversation? ❤

    • Thanks, Meri. I often ask him why he’s so different at home (not in so many words), but just yesterday I asked him if his teacher ever has to ask him to sit or stop fidgeting. He said no. I said why are you so restless at home, then? He said it’s because he’s excited to be home. Hmph. I can’t figure it out. But until I do, I’ll just be here… walking around on eggshells. 🙂 Let’s drink some wine soon, huh? I think the Landmark is calling our name… (Oh, and needless to say, I did terrible with my no sugar policy last night…)

      • Speaking of sugar, how does Finn eat? G is TERRIBLE at eating/variety/texture. I’m all for drinking wine. I’ve put it in the NO column for the time being, with the junk, but I can move it back over to the yes column for you. 😉

  4. A couple of things in your post made me think of PDA — Pathological Demand Avoidance. Terrible name, but learning about it helped transform my parenting. The Jekyll and Hyde thing, and behaving fine at school and not at home, and having to tell him the same thing 100 times…very familiar. Kids with PDA are basically so anxious (possibly from trying to integrate the way they perceive the world with the way they see others perceiving the world) that they are desperate to have some control, and therefore are unable (not unwilling) to do as they are told. MANY of them can hold it together at school or at home but not both. The usual parenting techniques, even the ones for autistic children, do not work.

    For info, see pdasociety.org.uk and thepdaresource.com. There are also Facebook groups for parents of children with PDA. I’d be interested to know if this resonates for you.

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