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This topic contains 26 replies, has 8 voices, and was last updated by Profile Photo Chavy 1 year ago.

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    avacad0
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    I definitely hear what you’re struggling with. The truth is that my situation is a little different so the response from the community is also very different. My ASD child is really young and he is also extremely high functioning. It does make it easier in some ways and much harder in other ways. I do get alot of help from the agencies and because he is so on the ball and he’s also little, for the people that have a passion for special needs children he is a perfect candidate to work with. On the other hand it is extremely painful for me to watch him struggling emotionally at such a young age and to notice how aware he is that he’s different than his peers. I have such compassion for him. I find these children so pure and innocent. I even ask him sometimes to give me a brachah when I’m going through rough times in life. I feel that hashem for sure listens to him instantly. These children really really suffer…..

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    LearningMan

    Your point about high functioning is right on the money.  High functioning is oddly the hardest because you have to fight to keep them integrated and it is hard on them, harm on the institutions and the other people.

     

    But thank G-d, my son is out of school.  He is joining a program which we hope will give him skills and a chance at a fully functional life.  That’s a huge blessing.  But it comes at the cost of struggling 20+ years and hoping against hope.

     

    Good luck and never give up.

     

    One thing to realize and be proactive about.  It is so hard that it creates tremendous strains on marriages.  Be proactive about taking care of your relationships, even though you are already overworked and over stressed.

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    Fay Brezel

    @canwetalk it sounds like many of your points were just validated. A combination of high functioning and being part of a younger generation significantly reduces this great burden and it’s unfortunate that you are in a different bracket with the age. What about the high functioning piece? It must be so difficult to find a group of people or even one other individual with a homogeneous struggle in this area because of the so many varying factors. Still, it does sound like you are not alone it trying to balance this severely difficult act. Regarding the other points you made I totally hear the frustration and it makes good sense to me. The truth is we’ll never know who is ‘hoarding’ their children for their own luxury and who really can’t lend a hand…The uncertainty in all this makes it even more difficult. I think the goal is to focus away from that though and focus on the places you are in control e.g. how you dictate your own life, hobbies, attitudes, building and strengthening relationships that matter to you like @learningman shared. Create, find, and cherish any present moment you can. All easier said than done but with determination and practice I believe and hope it is possible.

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    canwetalk

    Don’t want to sound like I’m always complaining but I do need to share/vent and I am seeking some practical suggestions as to how to deal with this:

    A few weeks ago my brother married off his daughter and the family made Sheva Brachos.  My brother is yeshivish and his new son-in-law seems to be over the top (that was certainly the impression we got over Shabbos Sheva Brachos).  Anyway, the weekday Sheva Brachos was a small intimate family gathering and, when the evening was ending, my special needs daughter, unbeknownst to me, tried to say hello to the new cousin.  (She is high-functioning and there would not be any issue or concern about negiah or anything inappropriate; she just thinks she is close to her cousins and wanted to say hello to him so “he should know who I am.”)  I turned around to get her and observe this scene:

    My niece is standing like a klutz, smiling.  My daughter is looking very perturbed and has tears in her eyes.  And the chosson is sitting the other way (backwards) on a chair with his head down on the back of the chair.  Silence pervades as she explains what she wants to do.  I look at the girl.  Blank smile.  The boy keeps his head down.  Nu!

    I gently take her aside and tell her we’ll do it another time, maybe he is tired or uncomfortable talking to girls.  She is not very happy and the 10-minute trip home she keeps on saying, “I just wanted to say hello,” while I continue with various platitudes.

    Baruch Hashem she gets over her disappointments quickly and we moved on.  It’s the mother that remains hurt.

    After thinking it over a few days and seeing that I was still bothered, I approached my brother when I next saw him and related what had happened.  I noted that he himself is in chinuch; his daughter is in chinuch; and the young man in question is a Lakewood bachur.  Is such behavior appropriate?  If they encounter someone who is a lesser individual how do each of them handle it?  Did he ever discuss this with his many children?  If he chose this young man as his son-in-law does he think it’s an important matter to pursue?

    He listened quietly, said he has to think it over, and that was the end of that.  Didn’t hear back from him. Didn’t hear from the couple.  Didn’t hear from anybody.

    What would you do?  How would you feel?

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    alwaysworried

    @canwetalk please this is not called complaining! thank you for sharing and i think that’s precisely what this space is for. I can feel the hurt in this situation and i would imagine that anyone honest with themselves would be equally as hurt. It sounds to me like you dealt with the situation in a classy and mature way. You took care of your daughter and then tried to get yourself some closure by speaking to your brother hoping he’d react in a way that explained the situation or at least apologized appropriately. Just because he didn’t respond the way you expected and the likely should have, that doesn’t mean you’re crazy or unreasonable or wrong for having your feelings. You did your absolute best in this situation so far and now is probably the most difficult test, will you hold a grudge or let it go? If you can try to remind yourself that holding a grudge won’t hurt anyone more than yourself and it unfortunately won’t “teach” them it might be easier to slowly let it go and realize this their weakness clearly and almost feel sorry for them that their lacking so much human acumen and sensitivity. Let me know if any of this resonates with you!

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    canwetalk

    My mind resonates just fine with what you’re saying 🙂  It’s my heart and emotions that are just crying, because I keep on encountering these difficult moments.  It hurts most because, in fact, I don’t have the support of family … they just don’t get it, so I’m in this alone.  Of course, I didn’t discuss this with any other family or friend because it’s real Lashon Hara with no To’eles.

    I guess that’s why I used this forum — as I said to vent, but also to have my feelings validated and to see if others have had such encounters, how they deal with it, and any constructive suggestions.  Thanx.

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    alwaysworried

    of course. that makes sense and you’re on such a high level that you are concerning yourself with loshon hara even though you’re in so much pain. Would it hurt to bring it up with your brother again and share that you’re really hurt and would hope that he can apologize and ask his new couple to be more sensitive to you and your daughters emotional needs?

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    Fay Brezel

    @canwetalk – thank you for using this space. Absolutely appropriate and not complaining. I hear you and feel you and don’t know how one can expect not to feel hurt in such a case. I like all the suggestions of always worried  as well as the last to try to gain some closure by asking your brother once again for some response. Does that sound like something you can do?

    Feeling with you, Fay

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    DDD

    @canwetalk you’re story is so poignant and I feel your pain. I can imagine myself in your shoes and I would feel exactly the same way. Your story brings to mind a different story about someone I know personally; in that case, the people involved who seemed insensitive had a special needs child themselves not too long after. Believe me, they learned to be sensitive through their own experiences.

    You have every right to be hurt and bear a grudge and it may be impossible to fight your heart right now with logic. If you can find the strength to forgive and forget at some point down the line you will be doing a great service to your brother’s family but more importantly to yourself . Although you have every right to want to keep a healthy distance at this point or maybe for long-term, I’m sure you do not want a full-scale fight nor do you want challenges to be imposed on your brother’s family (by Gd that is).  If you can move on and let go, you will be lifting a huge burden from your own shoulders and will live a happier life.

    Finally, I don’t know if I should say this, so if you don’t like it please just ignore/delete. Growing up in this community, it is not uncommon for boys not to look at girls; in fact, some of my very own blood cousins would not acknowledge me if we passed each-other on the street. I have never found this to be personal, although I certainly would have said hello myself. It is very possible such a scenario could have played out with any other child… if you could try and lump it into a cultural difference that you disagree with but nevertheless accept them the way they are as family you would be giving yourself a wonderful gift.

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    DDD

    Also, I noticed several people recommended reaching out to your brother again. Although I am not against that idea I am not super pro it either. I think only you know whether speaking with him again will likely lead to a whole-hearted apology and closure or no. From my experiences, the latter is often more likely and you will feel more pain and less closure as a result. I know that is so painful.

    If you take a look at the string “dealing with difficult family members” the consensus is that no one can change a family member you can only change your response to it and look for ways to make your life most productive albeit with this challenging person. You are the one who needs to be strong here and focus on making your life the best it can be. You surely have the will and the courage is definitely in there. Hatzlacha 🙂

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    canwetalk

     

    I am so glad that I chose to “vent” in this forum, if only to know that others care enough to write and validate my feelings.  It is truly refreshing! Thanx.

    My brother is a man of few words.  Yet, when I saw that he didn’t immediately express any compassion as I related the details, or even when I concluded (in tears), he still didn’t say, “You must have felt terrible,” or “I feel badly that ____ was hurt,” I knew that this was not going to go too far.  Now that a number of weeks have passed and he still hasn’t come back with any response – despite the fact that we’ve met at a few simchas since then – – I would not call to bring this up again.  I don’t think it serves any purpose to (sort of) force someone to apologize, if that wasn’t his initial gut response.

    I wouldn’t say that I’m holding any grudges; I’m just left with a very bad feeling.   The span between a “close and loving” relationship to “fighting” within the family is VERY wide.  So, no, we’re not talking family fights, but it doesn’t make the relationship any closer.  It is truly commendable that many of you are so “oisge’arbet” I just feel so tired sometimes of rising above things, moving forward, and being strong.   I guess that is our challenge in life, but every once in a while, or more than that J, I just want to feel good, special (in a good way), and accommodated.

    How true it is that we cannot change others, but I think EDUCATION is important.  I think MIDDOS are important in a society where EVERYONE is “learning,” and there is competition about who can be frummer than the other.  What happened to our bein adam l’chaveiro?  It’s simple mentshlichkeit to say hello, to wait your turn, to have compassion for those less fortunate.

    I don’t take offense at the reference to the hanhagah of those who do not acknowledge members of the opposite gender.  But I am reminded of the Talmud’s commentary about the chasid shoteh who would not rescue a drowning girl because it goes against his “religiosity.”  In this case, it would be like saying “hello” to a “child.”  A chacham has to know the difference.  In chassidish circles it is possible (I don’t know) that the Rebbes don’t talk to the women, only the men; in litvishe circles if you go into the Rov for a bracha or an eitzah he does talk to the women.

    I always think of the oft-quoted R’ Yisroel Salanter’s teaching:  “When I was young, I wanted to change the world.  I found it was difficult to change the world, so I tried to change my country.  When I found I couldn’t change my country, I began to focus on my town. However, I discovered that I couldn’t change the town, and so as I grew older, I tried to change my family.  Now, as an old man, I realize the only thing I can change is myself.”

     

    However, along with that realization, the objective yet remains, but now it is reversed, as the second half of this well-known teaching goes:  “I’ve come to recognize that if long ago I had started with myself, then I could have made an impact on my family, and we could have made an impact on our town. And that, in turn, could have changed the country, and we could all indeed have changed the world.”

     

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    Chavy

    CanWeTalk, you expressed yourself really beautifully and all your points were well said. I love the quote from Rav Yisroel Salanter. It’s so tempting to try to change others, but it doesn’t yield such great results as many of us know. I’m not either so fond of the “no talking to men/boys.” I understand that the reasoning behind it is for Tznius (modest) purposes. But, like you said, there’s a certain mentchlichkeit or code of mannerisms (decency) that’s missing. I don’t know if the following comment is for this forum, but I feel that the “no talking to boys” rule has gone too far. I’m not sure if it was you or a different member, but someone said a simple hello from blood relatives is not “done.” I find that to be disturbing. I definitely feel your pain and wish you the ability to fully make peace with this situation. It’s so hard when others don’t understand us; it makes everything 10x’s harder. At the same time, I’m rooting for you (we all are!) and know you can rise above this!

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