Binah's Special Needs Symposium

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downsyndrome

Wed, Feb 19 2014, 9:07 pm

Any comments on it? Yays or nays?

seeker

Wed, Feb 19 2014, 10:23 pm

What is it? Did I miss something?

downsyndrome

Wed, Feb 19 2014, 10:26 pm

Read this week's Binah; you can't miss it.

seeker

Wed, Feb 19 2014, 10:35 pm

Will do! I kinda jump straight to the serials, then the recipes, and then hop around until eventually I flip every page from cover to cover and realize I've read everything Wink

ROFL

Wed, Feb 19 2014, 10:36 pm

I don't get bina. Can you tell me about it or tell me if I can find on line

downsyndrome

Wed, Feb 19 2014, 10:40 pm

Four fathers of special needs children had a roundtable discussion at Binah's offices with Binah's own writer/moderator and the results are spectacular!
Don't think Binah can be read online.

Amelia Bedelia

Sat, Feb 22 2014, 11:05 pm

Downsyndrome, I was really inspired by your husband's (and the other panel members') remarks! Just read it over Shabbos.

amother

Sat, Feb 22 2014, 11:14 pm

I read it and although it sounds great I think it's a bit unrealistic for most.
I have a developmentally delayed ds and another ds with a major medical condition.

My house is chaos because of it!

I always wonder what it would be like if my kids would all be normal. Maybe being home would be enjoyable and I'd reap all the nachas these 4 mechanchim spoke about.

But it looks like they only got the version of how SOME families with special needs deal with it.

Or maybe when they grow up I'll be able to talk like them but really, come on!

Mama Bear

Sun, Feb 23 2014, 12:13 am

DITTO.

Loved it - very well done - but didnt reflect my reality at all.

It's very different with a generally well behaved child, and with someone severealy developmentally disabled, who turns the house into chaos.

One day I'll write about it....

As for applying to a Home, are you kidding? none of them want kids like mine. Sad

seeker

Sun, Feb 23 2014, 12:19 am

Well, they DID say they have/had hard times (I found it, obviously Wink

)

But yeah, it wasn't a very gritty, deep, revealing type of article. More of a nice shmooze. I thought it was nice and the participants were inspirational, but not much more than that. That seemed to be the point - something nice and not much else. You can't really expect much more from something so broad, bringing together just four people whose only thing they have in common is "special needs" that are actually quite different from each other, and with no specific focus about the special needs. The questions were pretty good but the responses all seemed vague, parve, and not always related to the questions.

They likely would have gotten a different angle talking to women, or non-big-inspirational-rabbis. In Binah's defense, they do run articles from different angles, often about specific special needs and often going into more detail about the issues, possibly not often enough but you can't say it hasn't been done and all they do is gloss over things with inspirational fluff. They can do inspirational fluff this week (and I did feel it wasn't SO fluffy) and soul-wrenching stories a different week. It's all good.

amother

Sun, Feb 23 2014, 12:43 am

DS- your husband was great.

I wrote a letter to Binah. My child has CP and is 19 and has also had a stroke and therefore only communicates via a board. In addition, I have a non-verbal autistic child and 4 healthy children between them. Only the Ribono Shel Olam can know my pain.

I'm curious if I'm the only one with a home in chaos that found it very much reflected my reality and was the first piece that ever gave me chizuk because it was real. I also appreciated Rabbi Rosenberg and Rabbi Reisman's takes because their children's issues were close to home for me. Rabbi Rosenberg's story about how and why he went public meant the world to me because although my CP son was not an option for me to keep a secret, my autistic child was something I'm still not fully open about with the world. For a while, we kept saying there were "behavioral" issues or other stuff. I guess I felt really down about having two children with special needs. I never heard s/one else talk about trying to "hide" their child's disabilities.

ILOVELIFE

Sun, Feb 23 2014, 1:03 am

I just read this thread.

I have to disagree that it wasn't deep or revealing. I found the fathers to be open and honest in a way that I found refreshing.

As the mother of a child on the high end of the spectrum who has been regressing terribly as of late and has brought on a share of heartache and heartbreak and loads of chaos...here's what I gained:

- It was the first time someone validated my need for a break from therapy. I am depleted of every bit of energy and suffering from burnout. I never thought to take a break because I'd do anything for my kid. This was just what I needed to hear and for me, a short break will help me help her better.

- As the previous amother pointed out, going public with a child who is on the spectrum is a very tricky place. I've grappled with this a lot and have myriad feelings because her disabilities are well camouflaged if you don't happen to meet her on a bad day. And if you do, she could just be a badly parented kid right? Rabbi Rosenberg's story gave me a lot of food for thought.

- Rabbi Reisman's story about the Debretziner Rov walking out and crying and coming back to put his best face forward is something I need to learn on both counts. I don't cry enough anymore. I don't allow myself the space or time to grieve. And I deserve it. My daughter is a twin and it's horrible to watch the gap between them grow.... OTOH, although I try to be happy and put my best face forward, I sometimes mess up and bring her issues along with me to a simcha or work and have hurt some ppl in the process. It's not their fault that I had a terrible morning...lesson noted..

- All of them talked about difficult moments with their children. I appreciated that. It wasn't all fun and games. And yet they all emphatically believed they see nachas. That lead me to think: what is nachas?Is nachas seeing a child do and say what you envisioned or is nachas having a child fulfill their potential within despite their disabilities? Meaning, if my child goes to sleep one night without tearing the house apart: that's nachas. If she gets a social nuance without my spelling it all out: that's nachas. Ahhhh but her twin can do it without all the help and her twin can do far more....nachas means appreciating and living in the moment. And honestly, if I can internalize just that: the article was a worthwhile read for me.

I appreciate these fathers speaking candidly and honestly and sharing a slice of their lives.

seeker

Sun, Feb 23 2014, 1:13 am

I also found the line about skipping a therapy session very refreshing!

downsyndrome

Sun, Feb 23 2014, 1:35 am

Thank y'all for your responses and acknowledgment of my husband's role - how did you put two and two together?? Very Happy

I understand and hurt for those of you who thought the symposium questions and responses to be too sugar-coated. As with anything else in life, whether joys or challenges, there are varying levels and no two people are on the same level. While there is definitely awareness and empathy for those grappling with more challenging disabilities, I fail to see the purpose in writing articles that are misery-fests. While it might make some feel validated in their intense feelings, what then? There is much more to be said and lauded when people with challenges attempt to mold their lives around their challenges and don't wallow in bitterness. Again, easier said than done. Some parents go through horrific daily crises and their lives are one big tumult. May Hashem help them all and ease their burdens. For those whose lives have room for smiles, let's capitalize on those smiles and write about them and spread the good cheer and coping mechanisms.

seeker

Sun, Feb 23 2014, 2:52 am

I think there is what to gain by sharing difficulties. It helps people who are not in the same situation to understand, empathize, and support better. This helps everyone. Possibly the people in the situation can get their validation in more specific venues, but by sharing publicly they can now benefit from increased patience from strangers and neighbors, help and support from friends and relatives. When we read about the kinds of challenges others experience, we know better how to be kind to them when we encounter them in any random place.

I don't have any close family members who are or have children with severe special needs, and reading about their struggles in magazine articles and blogs has helped me be more considerate when I cross paths with people who do. Before that I would not have known what to be considerate of.

But it doesn't all have to be at the same time. I'm fine with the positive media too.

ILOVELIFE

Sun, Feb 23 2014, 3:05 am

Just wanted to add DS that I never liked an article/interview with special needs parents before. I feel most ppl tell a one sided media feel-good tale....I think we only get to hear about their wonderful moments and that makes me feel like an idiot.

I found this symposium to be much more balanced and I actually didn't find it left me with a fuzzy, feel good feeling but not with a pity party either.

myself

Sun, Feb 23 2014, 6:46 am

It was great that they shared their doubts and struggles. I'm sure it gave many people 'permission' to mourn the loss of their dream, and the feeling that they are not alone. Many articles only portray the triumphs and proud moments leaving families in the beginning stages feeling misunderstood.

the world's best mom

Sun, Feb 23 2014, 7:23 am

They don't sell the Binah in my neighborhood. I want to read this article. Maybe I can get it elsewhere.

booboo24

Sun, Feb 23 2014, 9:09 am

They should have included the mothers in the interview......a fathers perspective and a mothers perspective can be two very different things, also women tend to be more emotional and might have presented an even deeper reality than what was portrayed.

downsyndrome

Sun, Feb 23 2014, 9:10 am

I don't know how to say this gently and sensitively enough, but I'll try, and my heart will hurt while I write it: Parents of children with autism fall into a class of their own. Autism is a pain-filled disability with barely a flicker of light at the end of the tunnel. Parents of children with autism who read positive articles about special needs children can't come to terms with what they're reading - What? These kids bring pleasure? Nachas? Laughs? Quality family life? - It seems like it's all a farce and the person/s behind such articles are trying to play the tzaddik/tzaddeykas role. But, they really aren't. Yes, there are very difficult times, challenging times, grueling times, mournful times....but the sun still shines bright and most of the time outshines the darkness in the lives of those whose children are not causing chaos in the homes and in the lives of the families they were born into.
You also have to remember that when comparing a disability like autism to Down syndrome, the way the diagnoses are 'presented' are totally opposite. With DS it's a slap in the face and a sledgehammer to the heart right after birth. With autism, it's glory after birth and the slap and sledgehammer come later on and they keep slapping and hammering away, as the children regress and their 'symptoms' point more and more in the autism direction. Of course there is denial! Who wants to believe that their perfect, beautiful baby has fallen into this horrid trap and is slowly dragging the whole family there too?
You see my point? I've always maintained that you cannot make a chulent out of all disabilities and now I see that even the chizuk has to be so fine-combed in order to suit everybody, and even that really rarely happens.
Am I horrible or realistic?

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