Binah's Special Needs Symposium

Mama Bear

Sun, Feb 23 2014, 9:31 am

I have to agree with everyone. Youre all making true points.

The symposium was very well done and there was lots of chizuk to glean from it.

And as I said - it does not reflect my reality at all. But as DS said, autism is a whole other kettle of fish. That's why I dont feel I gain from attending special needs events. No one can possibly understand my day to day - not even other parents of autistic children!!! Even when I go to autism events, the parnts of high functioning kids speak a totally different languge. They have their own challenges, which I have to admit, are sometimes more difficult than mine.

But then again, their houses arent being torn apart. Their kids arent kicked out of programs. They dont spend every spare moment finding counselors, rspite programs, etc etc . They dont freak out at the thought of another legal holiday.

So as I said, this feature didnt reflect the reality of the severe end of the spectrum. But it did have a lot of chizuk to offer. I cant say it wasnt well done.

I think the timing was simply not good for me - I'm coming off of a 12 day long endless compleltely unnecessary midwinter vacation! If we're still sane it's a neis! Very Happy

amother

Sun, Feb 23 2014, 9:58 am

I'm the first amother of this thread.

It's true what you are all saying. That this piece was about ds kids and physically special, but then the first R' was talking about 4 developmentally delayed children. so I thought maybe this would pertain slightly to me.
The points that some of you mentioned as helpfull I already figured out myself.
I knew about youngest ds medical condition before he was born so by the time he was finally born, I was bursting to tell my family. And since most of the people I know were davening for him as a newborn going through multiple life threatening surgeries, it was never a secret.
Although he still has this life threatening condition, he is absolutely adorable, the extra work is not a burden, I love doing things for him, he really has a special neshama that lights up our life.

Now, oldest ds is a whole different picture, he was born perfectly ok, at 6 months when he still wasnt babbling or turning over my mother told me to have him evaluated and his therapy keeps on getting upped. He looks perfectly normal and put together and cute! really! If you'd meet him in the street and I'd tell you this You would think I'm crazy! My family knows and we never kept it a secret what school/program he is attending.
I always knew that If I cant make a therapy session it wont kill him but it could kill me if I do go.

But my house is in shambles!
I read this on shabbos after the seuda (I have an aide that watches my kids so I can nap) we didnt have a normal seuda
ds 1 was literally killing middle ds (my poor adorable son who unfortunately has to deal with all this abuse). he was screaming and yelling the entire time and taking the whole house down and we were just trying to end the meal that didnt work out.
Now you might understand where I was coming from by saying it wasnt chizuk cuz it was read right after the chaos.

PS. I have no idea why I even mention ds 3 with his medical condition. He has only brought help to our family. we get chailifeline help with volunteers and extra fun on chol hamoed, we got an aide daily from the government, we get extra money in ssi, and all this we use for ds 1 who is on the spectrum/developmentally delayed. As much as we try to get help for ds 1 we get such a hard time and with ds 3, all I have to give is his medical condition and we get help.

Zehava

Sun, Feb 23 2014, 10:07 am

downsyndrome wrote:

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?

Right in the mark ds and very well aaid

ROFL

Sun, Feb 23 2014, 10:54 am

Just got a copy and read the article. I would love to know the wife's perspective. ALSo the Emunah that these rabbis have is outstanding ( they are rabbis after all) I wonder if we took 4 fathers who were average joes and if we would. Get the same chizzuk. Also do these rabbinic families get " more services" than us regular folks? I feel that when I ask for services there is a wait, our questions are not responded to right away. With apologizes to DS , the fact that the fathers are public figures the services may be responded to faster.

downsyndrome

Sun, Feb 23 2014, 10:58 am

ROFL wrote:

Ha! My husband, one of the panelists, is absolutely not a rabbi! He is also an 'average Joe', albeit a very nice one, and yes, we also often struggle to get services for our son. Our being somewhat in the public eye never influences our ability or eligibility to obtain those services.

the world's best mom

Sun, Feb 23 2014, 11:24 am

I have one sister who has a kid with Down's and another who has an autistic kid. I can tell you how different their lives are. ask anyone who knows them which one has a harder time and everyone will tell you that the autistic kid is waaaaay more difficult.

In my family, we all got services for our kids- all of my kids get therapy, and none of us are famous Rabbis. We're just plain shmoes or even less important than plain shmoes. We did have to fight sometimes for some of the therapy. My toddler who talks a ton and puts words together was just approved to keep his speech therapy 2 times a week, while my 5 year old who has real special needs was not given any speech therapy until he had a 6o percent delay. Then they wanted to take some of it away 6 months later even though he had not improved a single drop. I fought and we added services B"H.

amother

Sun, Feb 23 2014, 12:38 pm

Not to be confused with other amothers I'm going to use a color. DS, I agree that a child with DS is a diff category BUT I think what many of the interviewees had in common was that it was all not what they expected and the pain of having to deal with a child who can and won't do all that your other children can and will do is excruciating. My sister has a child with DS who is now 12. She went through all the stages of grief mourning the loss of a dream. He is her youngest and she's raised a beautiful family and in a sense it compounded her pain because she knows that while he's in a great environment and all....he will never be the adult her other children can be. He won't be the learner or the earner and most likely won't be a husband or father....it hurts. And as she gets older (she had him at age 41) it's not an easy road dealing with his idiosyncrasies delightful as he may be at other times.

My child has a degenerative disease similar to that of the Rosenberg children. My child was absolutely delightful and delicious up to age 6 when his disease began robbing him of many normal functions. Today, he is 11 and wheelchair bound. His speech is slurred but passable. I know that too won't last. My son is bright and realizes much of this. He cries from time to time but much of the time he's the most incredible kid I've ever met. However, Shabbos I realized that his moods and cognitive abilities are also not what they used to be. I'm told by parents ahead of the curveball to expect a combative and violent child soon. I don't know how I will ever survive and I'm warning my husband that he better look into homes because I don't know how I will ever wake up in the morning and watch my beautiful child in a monstrous form. Go ahead, judge me and call me selfish but really I'm just a mother in immense pain.

DS, I appreciated that there were four fathers at the table and that two of them had very different disabilities than DS. But I appreciated the DS perspective too.

As a woman whose husband is a silent heroic survivor, I thought it was actually a very good thing to hear the male voices for once. I don't know about you but in nearly all publications that have covered special needs, I find they're dominated by the female voices. Men supposedly don't have emotions. This was a refreshing change.

After typing this whole megilla, I think I'll send parts of it to Binah. Even if they don't print it, they should forward to the panelists.

PinkFridge

Sun, Feb 23 2014, 2:46 pm

amother wrote:

My child has a degenerative disease similar to that of the Rosenberg children. My child was absolutely delightful and delicious up to age 6 when his disease began robbing him of many normal functions. Today, he is 11 and wheelchair bound. His speech is slurred but passable. I know that too won't last. My son is bright and realizes much of this. He cries from time to time but much of the time he's the most incredible kid I've ever met. However, Shabbos I realized that his moods and cognitive abilities are also not what they used to be. I'm told by parents ahead of the curveball to expect a combative and violent child soon. I don't know how I will ever survive and I'm warning my husband that he better look into homes because I don't know how I will ever wake up in the morning and watch my beautiful child in a monstrous form. Go ahead, judge me and call me selfish but really I'm just a mother in immense pain.

DS, I appreciated that there were four fathers at the table and that two of them had very different disabilities than DS. But I appreciated the DS perspective too.

As a woman whose husband is a silent heroic survivor, I thought it was actually a very good thing to hear the male voices for once. I don't know about you but in nearly all publications that have covered special needs, I find they're dominated by the female voices. Men supposedly don't have emotions. This was a refreshing change.

After typing this whole megilla, I think I'll send parts of it to Binah. Even if they don't print it, they should forward to the panelists. [/color]

I've gone back and forth over whether I should comment but about the bolded:
There are people who put their kids in homes and institutions. Sometimes it's even in a private home. I am sure of one thing: yes, some people will judge, but (I hope!) many if not most of the people involved in running these homes, and respite, and everything else do NOT judge. They feel the pain and are simply grateful to have an opportunity to relieve it and give the parents the space they need. I know that that's how I would view someone in this very difficult situation.

Mama Bear

Sun, Feb 23 2014, 4:24 pm

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.

amother

Sun, Feb 23 2014, 8:00 pm

Mama Bear wrote:

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

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"

Zehava

Sun, Feb 23 2014, 8:38 pm

amother 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.