Feeling Invisible

[Pen]

On 6/5/2019 at 2:35 PM, Teaching3bears said:

 

 

So, if no solutions or suggestions, what sort of  responses do you want?

[Teaching3bears]

Exactly!!!!  You explained it really well!  Thank you.

On 6/7/2019 at 1:19 AM, Eliana said:

It sounded as if she wanted to be seen/heard by folks here.   - and the suggestion of sharing what happened in her day aided that, as did some of the responses she got that made her feel seen and valued and validated.

I know sometimes when my life is really, really hard, suggestions are exhausting, especially when I need to keep explaining more and more details or that I've already tried X, Y, or Z, and so on.  Sometimes I just want someone to really hear me.  To hear how hard things are, how tired I am, how much grief I have for the life I thought I'd be having but can't have... and to help hold space for those feelings.  Because I spend so much time with very determinedly rosy-tinted glasses, and because I really, genuinely, have so much to grateful for, it can be very powerful to be able to have a space where I can be not okay for a little bit, and have someone hear me, and really see at least some of the messy complexity of my life.

I could be projecting, but that is the ask I heard in what she posted.

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Teaching3bears, you are seen and cared for!  My heart aches for the hard things you have to face every day.  I see how hard you work and how much you are trying to do everything possible for your kids. 

I also see how alone you feel sometimes, and how little space there is for feeling like a full person, how narrow life has become, and how stressful.

I know what it is like to feel that there is no way out, that I'm stuck in an impossible situation.

Sometimes I need to sit with the grief that causes for a while before I can feel anything else.  Sometimes I need there to be a lull in the hard times before I can lift my head up enough to see beyond today, and sometimes I have to have both a lull and a shift in my emotional state before I can risk rocking the boat.  For me it is my own health issues, but I've fought really hard for the (very imperfect) space I'm in how, and many of the things that might help also risk making other things worse, maybe just in the short term, but it is hard to tell.  At times I am terrified by the idea of risking what I have for an uncertain return.  (When I have been ready to risk it, I have sometimes had great results, though not always, and am glad I tried, but also know that I needed to feel ready to face the setbacks and that risking my stability when I had no margin to handle a setback would have been a mistake).

My hope for you is that you can find ways to feel more seen, perhaps through sharing more about your days here, and to grieve the hard, sad things, and find a measure of peace with the challenging situation you are in... and, as you are ready, as many tools and tips to help you make the best life you can from the components you've been given. 

 

 

 

[maize]

Hugs to you Teaching3bears.

I hope your day is going smoothly.

[Frances]

On 6/3/2019 at 11:30 AM, klmama said:

I agree that getting help with sleep seems like the most urgent priority.  ALL of you need good sleep, not just your dss!

Several have suggested a long-term plan, possibly considering the option of residential care.  I don't have personal experience with that, but I know of two families whose adult SN dc are in state-funded residential care.  Both have severe autism; one speaks about 10 words, and the other is completely non-verbal.  They tried for years to care for their dc, but for various reasons it was no longer tenable.  They were hesitant to consider residential care, which required them to give up custody to the state, but it's been a positive experience for both young adults and for the families.

In once case, the decision was made because of the young woman's frequent violent outbursts, which were often directed toward her mother, who was with her all the time. Because her violence would be a danger to others in care, the young woman was assigned to an individual housing situation with caretakers 24/7 - I believe they work 4-hour shifts.  The mom is still able to be involved in the decision-making process for her dd, as the person who knows her best, and she still visits her weekly, but the daily care is no longer her responsibility.  Their relationship has improved significantly, the young woman is generally happier, and the mom is finally taking care of herself.  Her marriage did not survive, but I'm not sure it would have even without the impact of the dd's special needs. 

Another family I know also had to give up custody to the state for their adult SN dd to have residential care.  Again, she is happy in residential care, the parents have input as part of her care team and are able to take her on excursions, but they don't have all of the responsibility and can finally focus on taking care of themselves and have started saving for retirement, which they weren't able to do while they were putting all their extra money toward her needs.  Their marriage has remained strong.  

There’s a “This American Life” podcast episode that tells the story about a family with twins, one with severe autism. After they tried everything else, he went into a residential facility as a late teen. They found he was much happier and did much better with the very strict schedule at the facility, and they were still able to see him regularly, bring him home for overnights, and be involved with his care. Although they struggled with the decision, the parents were finally able to sleep, spend quality time with each other and their other son, and not live in fear of the next violent outburst.

[Pen]

13 minutes ago, Frances said:

There’s a “This American Life” podcast episode that tells the story about a family with twins, one with severe autism. After they tried everything else, he went into a residential facility as a late teen. They found he was much happier and did much better with the very strict schedule at the facility, and they were still able to see him regularly, bring him home for overnights, and be involved with his care. Although they struggled with the decision, the parents were finally able to sleep, spend quality time with each other and their other son, and not live in fear of the next violent outburst.

 

Oh, I remember that episode!  Very moving.  Probably would be great one for @Teaching3bears to hear!!!

[bethben]

I have been feeling much like you.  Invisible.  My 20 year old is severely handicapped and has a wheelchair.  He’s fairly healthy though and we can get out to stores though.  I feel like I have a wasted life.  I’ve gotten to the point that my youngest is 12, everyone is in school (except my oldest), and I “should” be able to do more.  But, it’s exhausting to get ds out and the only day program he can go to has a wait list that seems never ending.  We were told one year waiting list last year and are now told another year.  Even when I do get out and about, all people see is my son and wonder what’s wrong with him or want to know about him.  I’m invisible.

I want to do something where I am seen as just me- not someone’s mom.  To be known for what I am instead of being defined as a mom of a child with special needs.  I want a part time job or to be able to do something I love and am good at.  But, having to rely on someone to come to my  home adds another layer of stress that I can’t handle.  I know moms do it all the time with daycare and daycare workers that get sick but I just can’t do it.  It’s not a “this too will pass”/ eventually the kids will be in school situation.  It’s the rest of my life.  In theory, there are day programs and residential places he could go.  In reality, they all have long long waiting lists.

So, I hear you.  I do understand.  I don’t see a good solution either.  Have you ever looked at chronic sorrow?  It applies to your situation also.

Edited June 9, 2019 by bethben