Even on this board, a special education forum there is judgment around this.

It is 100% isolating.

I agree that if people are not living it they can’t understand it, I don’t think I would.

That being said I have found real friends want to help and listen and support but are not sure how or what to say. Lean into them.

NAMI was helpful.

I think a NAMI group for parents might be a good place to make friends.

I could have written this post. It's incredibly isolating. I've had a hard time finding friends in real life who are in a similar situation, and on top of that my son's behavior limits the amount I can socialize and has led to many strained relationships. I feel almost panicked when I encounter anyone associated with his school because I am so ashamed of his behavior there. Lately, I've been trying to focus on hobbies that I'm still able to do and finding more fulfillment in work. It hasn't made things less isolating where my son is concerned, but it has helped his problems not feel so all-consuming, if that makes sense.

I only talk about my kid with family and other parents from school. It's just too much work to explain everything to others--from the basics of the IEP, to appointments, to behaviors--it's too much background to build from and well-meaning people say dumb sh(t.

I struggle a lot with this. I only have my husband and son who really understand. I've dealt with it in the past by eating my feelings. I stopped doing that this year and have lost 20 pounds on Zepbound and intermittent fasting. It's hard because eating and tv was something I looked forward to after a difficult day. I'd like to find a support group to meet in person but everyone is too busy/overwhelmed right now.

I feel like when mine became violent and his mental health and behavioral issues got out of control I lost all of my friends. The ADHD and impulsive behaviors from his earlier life wasn’t so tough. But the emergence of the mental health issues changed everything.

And then new friends I made disappeared at the point of the second residential treatment, which was after the 10th inpatient hospitalization. And then Covid hit and what little human contact (outside of my family) I had was gone.

After a particularly low point a few years ago I started a FB messenger chat with a group of parents that I knew also had difficult kids and we have become a good source of support for each other. We weren’t all friends before - and in fact most were only acquaintances of mine. But we all were in the same boat. The group is private and only I can admit people - I think controls are important because we’ve all bared our souls to each other and shared deep pain so it’s not ok to add people without group approval because maybe people wouldn’t have shared certain things if the group was of a different composition.

Another thing that helped me is that I changed jobs and made new friends who know me now and decided to be my friend given my difficult circumstances. My old friends knew me before my kid became out of control. And my kid has made a lot of progress recently and I’m used to the fact that my kid won’t live the dream that I had for him, but he will be independent and able to take care of himself and hold a job, which eases my fear for his future. And he’s had some success in college recently so I even feel a bit optimistic.

And to the person who mentioned that people support families of kids who have physical injuries or illnesses, so true. A pastor friend once did a sermon titled
“Mental Illness is not a casserole Illness”. I had always contributed but even when I asked for help, no one stepped up. I gave myself permission to stop participating in food trains. It’s petty but I always have a lot on my plate and I do good things in other ways.

Anyway, OP and others who have felt and currently feel isolated, remember we are here for you. We may be anonymous and you may end up seeing a few AH posts, which we will report so they can be deleted. But we see you, we get you and we are here for you.

I have been there. My child has special needs and medical issues-which at one point were quite serious. I had to compartmentalize. I found some support online for what peers could not relate to and it helped some. I didn't drop my friends though, mostly. Sometimes I need a distraction and one friend in particular is really good for a laugh. Another is good for talking about my NT child. As long as the person isn't downright hurtful, I keep friends, but I also have realistic expectations and accept that some will never understand.

Anonymous wrote:

Anonymous wrote:Find a support group of similarly situated families and please get a therapist. You do need to find people that understand because they live it too. And While I'm sure it feels like your life is more difficult than others (and in many cases that is absolutely true!) you need to remember that everyone's life is a series of juggling hard stuff. So while you might be dealing with profound physical limitations of your child, your friend's family might be on the brink of bankruptcy, or job loss, or divorce, or be dealing with a child that is getting bullied, is stealing, drinking. And for people you genuinely think of as friends, reach out to them and tell them what you need. Some might surprise you.

If the issue actually was physical limitations, everyone would be sweet and understanding. OP was writing about a child with physical behaviors. The judgement is really isolating.

Like hitting other children?

Anonymous wrote:Find a support group of similarly situated families and please get a therapist. You do need to find people that understand because they live it too. And While I'm sure it feels like your life is more difficult than others (and in many cases that is absolutely true!) you need to remember that everyone's life is a series of juggling hard stuff. So while you might be dealing with profound physical limitations of your child, your friend's family might be on the brink of bankruptcy, or job loss, or divorce, or be dealing with a child that is getting bullied, is stealing, drinking. And for people you genuinely think of as friends, reach out to them and tell them what you need. Some might surprise you.

If the issue actually was physical limitations, everyone would be sweet and understanding. OP was writing about a child with physical behaviors. The judgement is really isolating.

Find a support group of similarly situated families and please get a therapist. You do need to find people that understand because they live it too. And While I'm sure it feels like your life is more difficult than others (and in many cases that is absolutely true!) you need to remember that everyone's life is a series of juggling hard stuff. So while you might be dealing with profound physical limitations of your child, your friend's family might be on the brink of bankruptcy, or job loss, or divorce, or be dealing with a child that is getting bullied, is stealing, drinking. And for people you genuinely think of as friends, reach out to them and tell them what you need. Some might surprise you.

I’ve been there. It’s really hard. The people who support me are not necessarily people I considered my closest friends when all our family troubles started. Keep your eyes open for people who do seem like they can listen without judging. For me, it has been 2 old friends who are special ed teachers. We were friendly before, but then they became the people to call when things are awful. And don’t discount the value of maintaining friendships with people you can’t really talk about your situation with. They can still offer distraction—an occasional fun phone conversation or even an evening out. They just won’t be the ones you open up to. I feel like I didn’t learn that quickly enough and have been ghosted by some people I thought were good friends because I just kept talking about the reality of my life. I assume they just thought I was a crap mom who couldn’t control her child and wanted nothing to do with me. Also, I looked into it but never ended up doing it—online NAMI groups might be an option. I hope things get better for you. Don’t give up looking for the right meds and therapy. Its exhausting but there’s hope. My son hasn’t been physically aggressive toward anyone in 9 months. I know when things were terrible I didn’t believe other people on this site who said things would get better. I hope you will believe me and have hope.

Like 19:16 said you need friends whose kids are dealing with similar issues. Those parents will understand.

I’ve been there. The only way I coped was finding some friends who had similar children. They to find support groups and then reach out to 1-2 that seem similar. Just keep doing that until you find someone who gets it.

When my child was 5-13, I dropped all friends who only had NT kids (or more like they dropped me). It was incredibly isolating. Find a good therapist and keep trying.

I think your friends should at least be willing to listen. I'm sorry that they can't cope enough to do even that. Very unimpressive.

The only people who truly get it are people who have lived it.

I've never met anyone in real life who actually gets what it's like to parent a child like mine who has severe physical behaviors. How do you get over the isolation? Even supposed close friends change the subject or suddenly have to go when they hear even a reference to something being wrong. It's just too unpleasant.