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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]Just talking about things matter of fact like they are normal (and they are to me) really helped me. Speaking the words and getting comfortable with talking about our lives. It was no easy thing because some of it felt so embarrassing- like having to call the police on your own child who is violent or calling off work because your kid had to be hospitalized again after another suicide attempt. [/quote]

I agree with this post a lot. I am the poster whose kid has profound ID. I have no problem being like “oh, today my kid ate her poop and I had to bathe her again” or “oh, she started her period and I’ve got to get her on birth control to stop it, because I’m not dealing with a period in a diaper.” I am just very matter of fact about exactly what our life looks like. I’m not embarrassed by any of this.

I also agree with the person that says you have to give up a little bit of hope. You have to let go of expectations.

I also totally understand the OP follow up of NOTHING IS EASY. Our life is very much like this. Nothing is easy. But, we have made it ok and are happy. One of the things we have done is outsourced care. We have to get a break from it. So, I would suggest OP consider this if you can afford it.[/quote]

This is OP. When you talk about your life, does anyone get it? I’m crying as I type this because part of what’s hard for me is that no one in my life understands what my life is like. I know I need to connect with other families like ours, but I have found that hard. (I’m a single mom with a behaviorally challenging SN child. When I meet a mom at OT, she has a partner and a lot more financial resources than me, so her life looks really different than mine. When I meet a mom at school with a special needs child, her child doesn’t have behaviors, so she’s mad that mine gets services so easily and is sometimes disruptive to the classroom and to her child.) My friends don’t get it at all, even if they try to. I feel lonely. Or crazy. I don’t even think my therapist really gets it.[/quote]

I’m the first PP in this part of the conversation. My life is not made up of parents of kids who have special needs. I have a few friends whose kids do, but it’s not that big of a group and it is almost totally online. I also have some grown up nieces with whom I’m really close. Really, I don’t think anyone gets what it’s like to live my life, except maybe for one work friend (and I transferred departments so I don’t see her) and my online friends, who talk only when one of us is in crisis. But people know it’s my life because, for better or worse, I talk about it.

When my child went through an unbelievably difficult mental health crisis that lasted years (seriously years) I lost friends because most people were exhausted just from hearing about a single evening in my life.  And if I didn’t talk becaise I knew I exhausted them, they avoided me.  That was tough and really sad for me.

On occasion acquaintances have made comments about my kids disruptive behavior and because so much happened in HS, their kids could tell them more details than I even knew. I always responded by reminding them that it’s not only smart and well behaved kids who have a right to education. Mine does too and I am fortunate to have a team who makes that happen. (I always had great IEP teams).

I think your life is harder than mine. I am married and I have other kids (and really fantastic dogs). One of my kids has low IQ, but honestly that’s nothing compared to behavioral issues. I mean, the worst I heard was scorn about my decision to “let” him go to go tech. While I’m pretty much on my own to take care of whatever needs exist, I never get pushback and I have two incomes to work with.

Like PP said, we can be your support. Lord knows, I’ve posted novels on this forum when I needed a kind ear and people did not disappoint. This is a tough road and I hope you can find some pride within yourself for the amazing job you’re doing to sustain you during tough times. [/quote]

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