Binah's Special Needs Symposium

amother

Sun, Feb 23 2014, 10:00 pm

Zehava wrote:

My brother is 14 now and he acts exactly like he did when he was 4. Only now he's big tall and strong and can't be controlled that easily anymore.

My sister was still throwing tantrums at 14. I don't remember exactly when she became calmer but probably closer to 18-20.
I don't have ruach hakodesh and I am very aware that every child is different. I simply wanted to offer hope to the parents and siblings of children with special needs. I hope all of you will one day see the light at the end of the tunnel. Again, "HUGS"!

PinkFridge

Sun, Feb 23 2014, 10:06 pm

Mama Bear wrote:

PinkFridge, unfortunately, kids who are aggressive are not wanted in any of the frum homes. They end up in non Jewish residential schools, with no kosher food. They have the staff that's equipped to handle such kids. And living so far away without constant supervision, we don't know if these kids are abused or not. It's giving me nightmares, knowing full well that my precious, precious neshamale will most likely end up in such a place one day. Nightmares.

I'd hoped things had changed since my time. (No, I don't have it in my family but know people my age who do.) Teary Eyed

downsyndrome

Mon, Feb 24 2014, 9:05 am

amother wrote:

He won't be the learner or the earner and most likely won't be a husband or father....it hurts.

[color=black][color=black]Boruch Hashem, I consider it a true blessing in every sense of the word that my husband and I don't agonize over Moishey's future and have absolutely no qualms about his life as a bachelor (most likely). We B'H see nachas and 'doyros' from our other children and with the same acceptance that we have embraced his disability, we have also accepted that he will most likely never get married. I know that many parents out there cannot come to terms with this, but chasdei Hashem Yisboruch that this is not our nisoyon. Now don't talk to me about.... when Moishey turns angry......particularly at me.....

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Sorry - I cannot get my own message to revert to the default 'black'. I've edited several times and my message is still red Mad

amother

Mon, Feb 24 2014, 9:18 am

amother wrote:

Well said Downsyndrome. I will say that as a mother of three children with special needs. LIFE IS HELL! nothing more said. Our house is chaotic and although there is lots of nachas and joy, the pain, anguish and worry overpowers all pleasure.

Same here. Although I only have one child with SN and people tell "oh, she doesnt look so bad" because she looks normal. She has developmental delays and is violent towards my other children. She tantrums constantly and you have to have the patience of G-d to deal with her. I have NEVER read in a magazine the TRUE day to day life of a parent of a child with SN. I did NOT enjoy the Binah symposium.

downsyndrome

Mon, Feb 24 2014, 9:32 am

amother wrote:

I have NEVER read in a magazine the TRUE day to day life of a parent of a child with SN. I did NOT enjoy the Binah symposium.

Amother, my heart truly breaks for you, but I want to ask you a question and I hope it won't hurt you or make you mad.
What is it that you would like to read in an article? My life is horrid? Nobody understands me? I hate Hashem (ch'v)? I hate the world? I wish this is only a bad dream? I hate my child? I hate my life?
I know that everybody needs to feel validated, but to what extent? Remember the quote by R' Rosenberg? You can get either sympathy or respect; you can't get both.
Now, if you are dealing with very close people in your life who are closing an eye to your daily struggles, then you have a problem there, and it is sad that a magazine article will be your consolation. How about open lines of communication? There are some parents who don't let on about their daily hardships, but are then mad at the whole world for not understanding them and/or not sympathizing. If you are, in fact, surrounded by supportive and involved family and friends, why do you need to shout out your struggles in a public venue? Why is that validation?

amother

Mon, Feb 24 2014, 12:19 pm

downsyndrome wrote:

Different amother here. I B"H am not dealing with as severe needs as the amother you are responding, too, but I understand where she is coming from. In my opinion, it is not so much that "shouting out your struggles in a public venue" will bring "validation", but rather the reverse -- some of these "inspiring" articles can make me feel so invalidated. I didn't read the Binah symposium, so I am not at all specifically talking about that. But in general, sometimes articles I read make me feel so guilty -- like what am I missing? Am I the only parent of special needs kids who doesn't find it rewarding? Who doesn't feel like it is such a zchus, and who feels my other kids are actual being harmed by having a special needs sibling? In other words, even if you don't want to write an article expressing the thoughts you mentioned in your post ( "My life is horrid? Nobody understands me? I hate Hashem (ch'v)? I hate the world? I wish this is only a bad dream? I hate my child? I hate my life?"), articles that gloss over these ideas delegitimize those very real feelings. So now in addition to my day to day struggles, I have to feel guilty about having these "forbidden" thoughts -- because everyone knows that parents of kids with special needs find their role inspiring and rewarding, not depressing and frustrating, so something is obviously wrong with me or my attitude.

And BTW, I STRONGLY disagree with the sentiment you quoted saying "You can get either sympathy or respect; you can't get both." Again, having not read the original article I don't know the context of the quote, but there are definitely people for whom I have tremendous respect while still having tremendous sympathy for their difficult nisayonos in life.

downsyndrome

Mon, Feb 24 2014, 12:59 pm

I think we all need to pat ourselves on our own backs, if nobody else will. Somehow, because the challenges are bigger, the need for validation is bigger. But, I have to tell you - in my typical parenting, I can often feel guilty too. I couldn't give my kids a fun-filled mid-winter break, I couldn't bake a stunning cake for my daughter's birthday, and on and on, the list never ends. However, if we feel comfortable in our own shoes and stop looking over our shoulders we won't become so irritated when we read something that is so different than our own reality. I think many parents are angry at those mushy, gushy articles because they don't believe them and feel they paint a wrong picture of children and families with special needs. But they don't! Like I wrote earlier, it is hard and painful to have to tell parents whose children exhibit violent behaviors that life with a special needs child can indeed be nice.
So, while the challenges are there even for 'easy' kids with special needs, they are not tearing homes and lives apart, and yes, there is true nachas, WHICH I WISH FOR ALL PARENTS OF SPECIAL NEEDS CHILDREN and of typical children and for all of klal yisroel.

amother

Mon, Feb 24 2014, 1:22 pm

downsyndrome wrote:

There is a huge difference between guilt over actions and guilt over thoughts. Yes, I feel guilty about all sorts of things -- but most parents of neurotypical kids are not thinking any of the comments on your list of things that shouldn't be written about -- while quite a number of parents of kids with special needs are. I'm not sure why you think it would be so wrong to publish something expressing some of those sentiments. And the amother didn't say that she thinks the printed articles aren't the reality for others -- just that it would be nice to have her own reality shared with the broader public as well. Wanting others to be able to understand a bit about your struggles is a common feeling, and I don't think it comes from "not being comfortable in your own shoes". Added to this is the fact that many of these disabilities that involve severe behavioral issues already come with a lot less understanding from others. No one is looking at the parent of a child with DS and thinking that if only their parenting skills were a bit better their kid wouldn't have this issue. Of course a parent who understands her child's disability knows it is not their fault -- but that doesn't mean the constant looks from others don't hurt. Perhaps some articles that explore the real life of those parents can supplement the mushy gushy inspiring articles, and help bring more awareness for ALL kids with special needs.

May we all have Nachas from ALL of our children.

cuties' mom

Fri, Feb 28 2014, 7:57 am

I wrote this a year ago to open closed minds (and to vent). http://www.imamother.com/forum.....lland
Do you think any magazine would ever publish an article about a mother constantly washing number 2 off her child's face, the bathroom floor and walls, and occasionally the kitchen and living room floor? There are plenty of blogs out there that discuss life with a special needs child. Mama Bear has the link to her blog in her siggy. Its worth reading if you want to know what life with an autistic child is really like. The question is, do mothers of normal children want to join our nightmare? They probably prefer reading "Welcome to Holland" and all the inspirational stuff.

Mama Bear

Fri, Feb 28 2014, 1:00 pm

ROFL wrote:

Some agencys have children women's league mishkan and Bais Ezra , I don't know about hamaspik and human care. I think it is very hard to take someone who has autisim with behaviors, but I also know that the state wants people out of the residential schools so homes for those with behavioral challenges have to be in existstance

Been there, done that. Women's League has a babies' home, but they turn down behaviorally difficult kids and rather take medically involved/physically disabled kids. All the other homes say the same thing: we're full, we'll put you on the waiting list. And when push comes to shove, they dont accept the hard kids.

It's such an oxymoron. The state is closing the state run homes but not giving money to open new group homes. WHat do they want???? THey are cutting funding left and right. They want the kids to be kept home. So they give more funding for respite and community hab. The trouble is, its impossible to find respite workers. No one stays at the job long enough. And they dont have *where* to take kids like my son, so my son ends up staying home with an aide, which is a bracha, BUT THE HOUSE IS IN CHAOS. Shabbos isnt shabbos, yomtov isnt yomtov. We cant go anywhere. My husband walks home after a day of work and has nowhere to put his foot down bc the floor is covered in ripped paper, shredded food, upended shelves. We have safety gates on the kitchen, but my son pushes them over. He sleeps in a special bed tent bc otherwise he wanders the house at all hours. But the state will not consider giving money to open more group homes! Go figure!

the only residential homes for behavioral kids, as I said, are non jewish, far away, and no kosher food.

Mama Bear

Fri, Feb 28 2014, 1:01 pm

amother wrote:

New amother here.
I wonder how old your kid is. I grew up with an autistic sister - on the severe end of the spectrum. She was much more difficult when she was younger - threw tantrums, was aggressive etc. but she became a lot calmer as she got closer to adulthood. She now lives in a beautiful Hamaspik group home where she is very well taken care of and she seems calm and happy. My kids don't mind at all when she comes to my parents for Yom Tov (when we are there too), but they really have no idea that she wasn't always this way.

MB, I really hope that your situation will improve and things will become easier for you as your child gets older. "HUGS"

Unfortuantely the opposite is usually true, that they get HARDER as they get older. MORE aggressive, and so big and heavy that you can't manage them. And Hamaspik does NOT want these kids, esp if theyre not from kiryas yoel or monsey and/or don't have their medicaid service coordintion through them.

It's a travesty.

mha3484

Fri, Feb 28 2014, 1:43 pm

amother wrote:

I have to say, I'm witnessing something similar in my personal life right now. A realtive with PDD and a host of behavioral problems is nearing his 18th birthday and slowly starting to act like a mentch. A few years ago he was throwing things and tantruming like my pre schooler.

Every child is different but don't lose all hope.

ILOVELIFE

Sun, Mar 02 2014, 1:46 pm

ROFL wrote:

Kids on the spectrum have a hard time in their adolescents ( I think it is puberty that does that. All those hormones ) I think they start to quiet down in their 20s Behavior management and medication is the way to keep things under control. I have also seen that iPads keep kids busy so that they don't act out more. But then they obsesses about playing all the time.

this is more typical of the children I've seen but I must say that I grew up around the corner from a girl who was non verbal and very aggressive all the years. When she was about 17, she suddenly became a whole lot more livable. Today she is 30 and living in a nursing home but in much better shape than she ever was. Her body is much weaker though and I think that is a big part of it.

ILOVELIFE

Sun, Mar 02 2014, 1:47 pm

amother wrote:

Amother from before that was not satisfied with the Binahs article.
I LOVE what you wrote on that thread!!! Thank you ! Finally, someone who is realistic about the day to day life with someone with special needs! Its NOT a chilled trip to Holland! It's funny because my daughter doesnt even have such severe special needs- she's developmentally delayed but her behavioral problems and tantrums just take over my whole house and everyone in it.

Thank you for that! I really appreciate it!!!

Pls write a respectful letter to the editor. We want to hear from you. So far, letters are pouring in from SN parents who were v touched by the piece. A small batch of those letters will b in tomm's Binah but we'd love to hear from more readers. Get specific and send it fast Smile

We're limited on space but we want to hear your views. inbox@binahmagazine.com

amother

Sun, Mar 02 2014, 3:00 pm

Mothers of SN children: I have read this post and I cry. I am so happy that you have shared your struggles and your hopes and pains. B"h, I personally I do not have so much exposure to children with SN. Reading your descriptions and visualizing your homes, I express complete admiration for your strength and compassion. I know that you probably view yourselves as mothers and, as a mother, there is nothing admirable about raising our children - however they present themselves to be. Hashem gave us our children as a gift and it is our duty to do what we can to raise them the best that we can. I am in awe and admiring your strength as individuals and mothers. Because, I know that sometimes at night I wonder "What kind of mother am I?" "What will be with my children when they grow up?" "Why me?" and I feel the vulnerability of life and feeling overwhelmed. I admire your strength in fighting for your children, growing with the challenges that you have in raising them (and taking care of their siblings, your husbands, your jobs, your own health...) I have also read some of your posts in other topics and appreciate that for some of you, your humor is intact. I admire you.

I have read your posts and I personally have a day off tomorrow. I plan on writing a letter to my local assemblyman, congressman, and senator (I live in Brooklyn) and complain about the funding that are allocated from govt. sourcing towards groups and homes for children. I know it probably won't do much, but you have compelled me to action. If you have any ideas how I can support families like yourselves, please post.

Your posts have stirred in my heart a feeling of empathy and I would like to help.

In closing, I do not write regular posts on imamother (I'm a bit shy..hence the amother Smile

), but I will continue reading this thread. You are an inspiration, your children are blessed to have you as mothers, and may you all find the continued strength. Know that there is a mother out there praying for you and hoping you find comfort in the years to come.