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    avacad0
    Participant

    Hi. I have a child diagnosed with ASD. He looks completely normal yet his actions are very different. I have a hard time at times when in public between people with  whom I don’t feel like sharing and explaining. I feel so judged and bad. Almost as if it’s my fault that he is the way he is. Anyone can relate to my situation?

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    LearningMan
    Participant

    It is very very hard.  Men and women both have a hard time and there is no real answer.

     

    My child is like that and acts honestly weird.  Now he is 20 years old and after huge efforts, I am very proud of him.  He’s a good kid and G-d willing will be starting a program that is appropriate.

     

    If you would like to speak, I have a lot of experience and can commiserate.

     

    Best

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    alwaysworried
    Participant

    This must be a really hard struggle. I know that many people feel ashamed with special needs children and feel like others look at them and judge them. i know for myself that i look at families with these children with so much admiration and respect and i’m not lofty so i can imagine that there are others like myself and therefore a lot of the shame is projected although only natural i assume. The fact is that this is a really difficult test from God and no one can argue that fact, hence the tremendous respect and admiration you all deserve.

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    avacad0
    Participant
    Topic Author

    Thank you for the feedback and encouragement! It is a very big struggle for myself and my family. Although I am thankful to hashem for giving me the opportunity to help one of his struggling children reach their maximum potential. I still struggle with feelings of shame and guilt.

    @canwetalk shared this-

     

    HASC runs support groups for parents of children with disabilities.  I believe they have a separate one for those with Downs Syndrome and another one for other disabilities (mostly ASD) .  Contact Brocha Lavrinoff 347-453-3576.

    Many parents with ASD children can relate to the discomfort of having a child on the spectrum, wherever they may fall.  I believe that there is a great need for EDUCATION within our community so that those who Baruch Hashem do not have this experience can better understand where we are, how we feel, and that our children could greatly benefit from assistance from their teenagers who could be com-habs.

    I personally find it extremely disappointing and frustrating that I have no one to accompany my ASD daughter to activities (she can’t get there on her own) or to spend time engaging with her.  She loves to play word games and could greatly benefit from one-on-one interaction with a typical teenager.

    Any thoughts on that?

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    avacad0
    Participant
    Topic Author

    I agree that there should be more awareness about it in the community. People that were not challenged with it don’t begin to understand it. It’s not that they don’t want to help they don’t begin to fathom the struggles we go through with having a child On the Spectrum. I found that being forthcoming to people that I feel can help me with my daily struggles raising such a child has helped me tremendously. I don’t go around advertising my sons diagnosis but I share it when it is beneficial for the cause.

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    LearningMan
    Participant
    Just don’t expect people to work with you.  Though it’s not fair, life’s not fair.  If people are kind appreciate it.  If not, move on and take care of your child.
    It’s extremely hard.  But the other choice is caring about other people’s opinions more than your child.
    I hope I don’t come across harsh.  Many people have been kind to me and mine.  But the only way to be effective is to realize that you are stretching people when they work with you.  Once you realize that, you can focus on making things work.  They will always be complex.  Your situation is complex.  That said, practicality demands that you ask for help and don’t expect more than people can handle.
    And if people are stupid about it, you learn how stupid people can be and look for better people.
    Good luck.  Being a parent isn’t for wimps.  Being a parent of a child with ASD is for great people.
    Pray, it helps.  They are G-d’s Children too.

    @leanringman thank you for sharing your strong, practical and realistic thoughts.

    This is brilliant – “Being a parent isn’t for wimps.  Being a parent of a child with ASD is for great people.”

    Also, it may help to remember that everyone is fighting a battle on some level so when people are not there for others with obvious battles (child with ASD) it may be because they are fighting a private battle. Keeping this somewhere in mind may help you and others to take a lack of presence less personally. Not an excuse, just an explanation.

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    avacad0
    Participant
    Topic Author

    I guess everyone’s experience is different. No two people have the same exact situation. I struggle very much with reaching out for help in many areas of my life. So for me I had to learn to let people help me. I had to surrender the fierce control that I have regarding letting people help me with what I need. I have been amazed at the kindness from the community who are educated in the field of ASD. I was even told by someone that when you let others help you it is a great deed that you’re giving them the opportunity to be on the giving end. And yes you will always find those people who will be insensitive with their comments and lack of empathy but that is their struggle not mine.

     

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    anonymous
    Participant

    Wow @avacado your very strong! I have a special brother and was always very proud with him, I believe it’s because of the community is being very accepting to special needs kids.

    Also want to mention that not always when people look at you , they judge you.  I personally really admire very much when I see the way people include these kids in regular activities (going shopping,shul) despite the challenges.

    Besides I have stronger connection to this sibling, these kids are extremely lovable,and I love the way they let you know what they really feel and think, they are not two-facers!

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    avacad0
    Participant
    Topic Author

    I definitely agree that most people try very hard to be understanding and nice. There is that percentage of people that will make you feel bad and offer unwanted advice which can hurt me. But those people are out there and can affect anyone in any situation, not only with my special needs child. It is our call to filter whom we choose to connect to. To find the compassionate and caring people who love to help and are there to help anyone in need.

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    anonymous
    Participant

     

    It is our call to filter whom we choose to connect to. To find the compassionate and caring people who love to help and are there to help anyone in need.

    Absolutely,  your right

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    canwetalk
    Participant

    Many valid points have been raised in the discussions.

    Fay makes an outstanding observation that many people are struggling with their own private battles.  I respect that.

    I think the disappointment and frustration arises because of the special way we frum people like to always point out that we’re mi ke’amcha, raising the standard of our expectations considerably higher.

    I think the level of acceptance, help, understanding also depends on the specific community within which you live.  I haven’t quite defined those segments but I think those who are part of a  kehillah or large networked-family have more acceptance and help.

    With an over-20 ASD “child,” I can say that there has definitely been a change … as more people unfortunately come into contact with special needs individuals.  But it is a very s-l-o-w change and only those who have a family member, or close friend, with a special needs child — whatever the disability — begin to even think that there is another sphere of reality in the community aside from the norm.

    I do not think that “most” people try hard to be nice and understanding in our community.  I find more sympathy, openness and acceptance in the secular community — on any level — but that doesn’t provide friendship for a frum ASD child.  It just means they’ll let me return clothes after the designated time, renew her library card without making her come down to the library, give me an appointment after regular hours or such.

    I struggle with dumb and insensitive remarks in shul, at weddings, family get-togethers … it’s no fun.  Com habs are as flighty and unreliable as the weather and most families use the school’s chesed hours for chesed at home.

    Sorry to be down … I guess I’ll have to pray harder tomorrow …

     

    @canwetalk I appreciate the authenticity in the way you articulate this struggle. I wonder if the progress in the community at large is more recent and somehow your journey with your 20 year old child left you feeling out of network with the grassroots movements that came later. I wonder if there’s some resource that bridges this gap?

    Also, this point really struck me “most families use the school’s chesed hours for chesed at home”. To me this telling – I wonder if that is letting you and the rest of us know that so many others are simply struggling too much to lend themselves to others. It’s a sad reality but maybe something we need to face on some level. Just my thoughts…

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    canwetalk
    Participant

    I like to believe that I am hooked in with most of the agencies and movements that have been developing.  I think that many choose to work within a very narrow framework in order to be able to promote themselves in a positive light, e.g. “integrated” camps that only include a 10% population of the special needs population (that has been clearly stated and appears in the promotional material if you run the numbers); music lessons or dance lessons for “special needs” that only want like up to age 10 “because they are most successful with them”; etc.

    We also have to remember that many are working with the younger generation who are just starting out on the journey when hope still shines brightly and there are in fact more resources for them then there were ten years ago.  For now, the “older” population is forgotten, more difficult to deal with, and are not being addressed.

    If we want to be generous we could say that using the chesed hours for home means families are struggling.  The cynical me says (1) it’s just easier to have your daughter fold the laundry for you, run the errands, or babysit so you can have some down time, or go to a wedding, and call it “chesed” hours than lend her out to someone else and teach what true chesed means; (2) if they are struggling because they have ten or fifteen kids that was on some level a conscious choice in this world.  (There are those who say that up in Shamayim we each chose the difficulties in life that we wanted to face, i.e. when presented with the various options I chose a special needs child and others chose their “pekel.”)

    I think that at this point I am just seeking a more generous level of tolerance, understanding and compassion from Acheinu Bnei Yisroel, a meeting of minds of some sort, and a networking group that openly and realistically share their disappointments along with the high points.  Sometimes when the discussions become all warm and fuzzy, it is frustrating; it suggests that these people are Malachim who never have moments of doubt, of aggravation, of disappointment, of frustration, and they never yell, scream or cry.  C’mon!

Viewing 15 posts - 1 through 15 (of 28 total)

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