Being and SN Parent is Lonely AF

[Anonymous]

I thought as my kid got older they’d get more independent. Not so much. Their disability was not evident early on. Only just diagnosed ASD at age 10. Wrapping my head around our new normal. Battling years of fatigue. Watching peers develop new hobbies as their kids become more independent and capable. My purpose is to commiserate more than to complain.

[Anonymous]

I’m sorry. I’ve been there too. If it’s any consolation, things got better for us and are way better in middle school than in elementary school. Still rough, but better.

As an aside, my husband is traveling for work and is currently stuck at the Amsterdam airport. He keeps texting to complain, and all I can think is “of course it sucks and things are delayed - it’s f-ing Holland!”

[Anonymous]

It’s hard. I found commiseration in the monthly parent group that my DC’s therapy group facilitator ran. I also had luck at our congregation’s Parents of children with special needs support group. Our school PTA tried to develop one but it never took off. I know that others have had better luck with that. if you are in Arlington or Fairfax, there are active parents in SEPTA, you might find community there. (Special Education PTA).

[Anonymous]

Anonymous wrote:I’m sorry. I’ve been there too. If it’s any consolation, things got better for us and are way better in middle school than in elementary school. Still rough, but better.

As an aside, my husband is traveling for work and is currently stuck at the Amsterdam airport. He keeps texting to complain, and all I can think is “of course it sucks and things are delayed - it’s f-ing Holland!”

Okay, that was funny! Not a big fan of the Holland story and agree with OP- it is very lonely! However, once you find a couple of people who get it, they will be your people and will help you there’s the ebbs and flows. You don’t need many, just 1 or 2. Look for people at therapy or activities and try to strike up conversations. Many others are just as lonely and would be thrilled if you made a connection (I sound like a dating service!).

[Anonymous]

Anonymous wrote:I thought as my kid got older they’d get more independent. Not so much. Their disability was not evident early on. Only just diagnosed ASD at age 10. Wrapping my head around our new normal. Battling years of fatigue. Watching peers develop new hobbies as their kids become more independent and capable. My purpose is to commiserate more than to complain.

You feel isolated because your child was just recently diagnosed. We all probably felt isolated in the beginning. I did. Then I found a great community by getting involved with other parents of children with disabilities. I highly highly encourage you to do the same. It's still hard but it's a lot better when you aren't isolated. If you post where you live, people may even suggest certain groups.

[Anonymous]

We live in Silver Spring.

[Anonymous]

We found several parents while hanging out in various waiting rooms. Made some very good friends that way.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I thought as my kid got older they’d get more independent. Not so much. Their disability was not evident early on. Only just diagnosed ASD at age 10. Wrapping my head around our new normal. Battling years of fatigue. Watching peers develop new hobbies as their kids become more independent and capable. My purpose is to commiserate more than to complain.

You feel isolated because your child was just recently diagnosed. We all probably felt isolated in the beginning. I did. Then I found a great community by getting involved with other parents of children with disabilities. I highly highly encourage you to do the same. It's still hard but it's a lot better when you aren't isolated. If you post where you live, people may even suggest certain groups.

Exactly this. my sibling refused to get to know any other SN parents through local associations. And she is left alone to try to figure things out. That community is invaluable

[Anonymous]

If you are in Silver Spring with an ASD child, check out Xminds: https://xminds.org/discussion-groups. They have some support/discussion groups for parents of autistic kids in MoCo.

[Anonymous]

Is there any support for nova parents? I was once directed to a FB group but there was really no depth to it.

[Anonymous]

My son was diagnosed with ASD at 11.5, it's been 3.5 years now (he turns 15 in a month), and getting the right supports has proven invaluable and our relationship and household are far better off for it. It gets better. He still struggles socially, is immature compared to his peers, and still struggles with sensory stuff. The right supports have helped him and us find workable solutions to most things, and while there's a long way to go, I can at least see us actually getting there (independence as an adult being the goal).

[Anonymous]

Anonymous wrote:Is there any support for nova parents? I was once directed to a FB group but there was really no depth to it.

Would love to know this also.

[Anonymous]

I've been there, and I agree. It is kind of a unique type of hard getting a diagnosis a bit later. We had some issues very early on, then things got very smooth and seemed on track, and then we got a diagnosis at age 9, after things completely fell apart at school and home for DC.

I lost a ton of friends at that time - partially because we moved to another school and partially because I couldn't handle watching some of the kids mine had grown up with succeeding so much while he was in the midst of a terrible time, and my friends just didn't get it at all.

Fast forward a couple of years, and we have found that some of the interventions have helped a lot. He is way, way happier, and so are we. There are still tough times, but it's pretty good right now.

I do still find it lonely, and some of the parent groups where I expected support and friendship have not really materialized like I had hoped. Ironically, some of the best support has ended up being random neighbors and work colleagues who I found out also have ND kids and "get it." I find this area to be a tough place to make friends anyway, but other parents with SN kids will be supportive. Hang in there. You can do this.

[Anonymous]

I would love to find an adhd support group in the fairfax area. Any leads? I often feel isolated and like i have to fake it with my friends with NT kids. It would be so nice to have even one person who actually gets it to talk to.

[Anonymous]

Anonymous wrote:I would love to find an adhd support group in the fairfax area. Any leads? I often feel isolated and like i have to fake it with my friends with NT kids. It would be so nice to have even one person who actually gets it to talk to.

What age is DC?