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Post by Clara Hinton on Jun 1, 2010 11:12:37 GMT -5
Dear SG Family, This board seems to have fallen by the wayside, and it is my thinking that maybe there is no longer a desire or need to have this board on SilentGrief.com.
Can I have some input, please? If I don't have any responses in a week, this board will be elminated from SilentGrief. I understand that our needs for support change, and possibly that is the case for this board for "Parents of Children with Special Needs".
Thanks so much for your help and input!
Love, Clara
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Post by babs on Jun 2, 2010 22:31:23 GMT -5
Clara, I know that I'm not around alot these days but thought I would give you my 2 cents I think that I don't post much on this board because I feel like Brody's disabilities are so severe maybe we don't fit in. i mean although people sympathize and care sometimes it feels like pity. I am certainly only speaking for myself, but I have been accused of being 'whiney' and 'always complaining when some people woulkd kill to have their child here in any condition' so I don't want to put his problems or myself out there like that IYKWIM. But those are MY issues I guess and come with the territory I'm afraid. I don't know any one else's opinion on this board though...I certainly hope if people still want it they make sure to post!!! Thank you for always trying to fit us all in here at SG!! Love and Peace, xoxoxoxoxoxoxoxo me
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Post by Clara Hinton on Jun 3, 2010 10:49:52 GMT -5
Babs, ((((hugs)))) and more ((((hugs)))). Thanks so much for helping me to understand more -- at least from your perspective. I hope others will chime in and speak up, too. Once again, the grief and associated issues of children with special needs is often a "silent grief" because others really don't know what to say that can help unless we've "been there." *If* we no longer use this particular board on SG, I'm hoping that I can post some resources of other websites that might deal specifically with special needs so that I can direct parents to help and support. You have a very unique type of grief and daily issues in your life that many others do not have a clue about because of not having a child with special challenges. And, you need very special support and encouragement for those things! Thanks so very much for your input. Special prayers for you and Brody today! I'll be in touch about this board. Love and prayers, Clara
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Post by msmarib on Jun 6, 2010 2:10:21 GMT -5
Babs, I really appreciate you "going first". I read the posts on this board and felt like my special needs child wasn't quite "needy" enough. Kyle (my first DS) has ADHD and depression (though the psych said it was likely no longer present). I have been through a very difficult time getting support to parent him and I would really appreciate a place to share my concerns and needs with others. I just haven't seen anyone else writing about their child w/ADHD in a long while. If there are others, please come out so we can talk on a thread about this parenting challenge and support one another. Mari
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Post by Miss Sunflower on Jun 6, 2010 2:44:54 GMT -5
I am probably not "supposed" to write on this board either, but I have a younger brother, who I have, and am helping raise, who has special needs. He was diagnosed with Encopresis and Asperger's. They have changed his diagnosis from Asperger's to "severe anxiety." (Not sure how I feel about that, he has so many characteristics of Asperger's and I want him to be properly diagnosed so that we can help him in the right way.) I posted a thread about it on this board awhile back. I would like to be able to talk to mother's who have children with Asperger's, I know that there are a few on this board. Although I am not his mother, I am like a mother to him, and feel like he is my child as well. My mother and I have co-parented him, and continue to do so (with some exceptions, of course). Anyway, I would like to be able to talk about it with other people, to get some ideas of ways to help him. That's my two cents. Not that it matters much, since he's not my son, but thought I would throw it out there.
I apologize if my posting on this board upsets anyone.
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justjen
New Member
By God's grace alone!
Posts: 28
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Post by justjen on Jun 6, 2010 22:02:56 GMT -5
I like the idea of posting on here. I first came on this sight about a month or so ago & posted some but it seemed no one else was writing on this so I quit checking. I have a 6 1/2 yr old with Asperger's & am a special ed teacher. For the others that posted, no matter or severe or mild the case is they are special needs & by posting about issues we are not saying that we don't love having them & we are not being "whiney". At least that is my opinion. I don't really feel like I am "grieving" because i am completely happy with my son & wouldn't change him for anything in the world. God knew what he was doing by giving me this child & honestly he was better fit for me (especially as a first) than a "normal" child. But I do have things I'd love to talk about with other parents of special needs children that other parents don't truly understand. And Darcy, I feel that honestly it would be great for this to be open to parents, siblings, ect because even if you didn't do co-parenting you still care for your brother & want help with certain things & can share advance from things you have gone through or seen him go through.
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Post by Alaska on Jun 8, 2010 5:48:26 GMT -5
I personally would like it if we could generate more traffic here. I suppose one of the problems, like everything else, is that each of our children and their needs are varied (widely!) and unique. I would hope we could still work with that. What I appreciate most about this format is that there is some built-in anonymity, which oddly (or maybe not so oddly) allows me to share more, more honestly than anywhere else in the world. I cannot ask about certain issues with my children or my husband, or myself for that matter, on something like Facebook because it's way too public and filled with people I know from everywhere:family, school friends, work friends, old friends, some people I barely know at all but who know my family, etc. If I could talk to them about these things then I wouldn't need SG anyway, you know?
The reason I have not been active here is that I got really busy there for awhile and didn't post much anywhere, then when I came back it seemed everyone had disappeared from here, then I got out of the habit of checking this board for anything new. If we could snap our fingers and have everyone posting again...
Babs, I appreciate your honesty, but I sure wish you didn't feel that way. I love you and B and love keeping up with you. I know that you have to deal with some things that I cannot fully appreciate because I have not been there (and I hope that doesn't sound like pity) but I would want to offer support anyway. One of the things loss has taught me is that none of us has the same experience and I try very hard to acknowledge that I may not totally "get" what someone is going through and it is my hope that that acknowledgement would help me be a support and not a hurt. I don't know... I just know I miss you.
It seems like we all have wondered if we "qualify" properly to post here. Are my kid's needs severe enough? Are my kid's needs too severe? I'm not sure what the solution is.
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Post by msmarib on Jun 8, 2010 23:09:02 GMT -5
Kelly, That's exactly how I feel. Everything is ditto for me. I was wondering if I fit in here and I'm reading that we all do. So, let's post away and get/give the support we all need. Mari
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Post by eg on Jun 13, 2010 15:40:01 GMT -5
I was going to post on this the other day but got busy (hah!) Honestly, I'm with babs....I mean who in the world has 8....EIGHT different disabilities...yea he has adhd so i can relate, he has CP, i can relate, autism can relate, hard of hearing, genetic abnormalities, all that i can relate to but nobody and i mean nobody else has ALL of them. Frankly, it disgusts me. Not that i want anyone else to go through this but that nobody else goes thru this. If you want to keep this board open I'm up for it...not sure I can really get any support but i'm willing to offer it
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Post by monicag on Jun 14, 2010 14:31:07 GMT -5
Oh my... I have not been here for about 6 months...it is not for lack of want. So many things to do. I find so much comfort in listening to all of us. WE ALL COUNT. Jesse may have 4 things different and someone elses precious little one may only have 1 but that does not matter. He has come a long way and every little victory is HUGH. I'm sorry if people really don't understand but I feel like we all walked a mile in each other's shoes....in one way or another and I would like to see us continue supporting each other...even if it is only once in a while. I came back today for an unknown reason (and now I know)....I would love to see the board stay...but if not I would welcome a seperate group somewhere...(not that I know the first thing about making that happen)
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Post by wuvmyangel93 on Jun 15, 2010 10:23:02 GMT -5
And apparently we still really need this board, because some posts on the moms board are ONLY for typically developing kids. That to me is wrong.
Barb, Monica, Rachel, Mara and I are just a few who have been here a long time. None of us post often anymore but all of us know what it means to be a mother, we are all mothers we are just mothers NOT only after loss but also to very very special children with unique needs & challenges.
This board is very needed.
When a mum first comes to sg it is often after a loss of her child or child to be than by the grace of god she finds herself pregnant again only to have those hopes & dreams of a "perfectly healthy/typical" child are shattered. They need a place to go and scream. To go and learn from others who have walked this path before. To go and celebrate the little accomplishments with.
I miss hearing Jesse, Brody, John, Allie stories, I miss hearing about their accomplishments and all they are doing. All are growing up and all are doing different things now and NO matter how many "challenges" they have I love hearing their stories.
So barb please post often about Brody I really would like to know more.
Monica so happy to see a post from you.
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Post by wuvmyangel93 on Jun 15, 2010 10:27:23 GMT -5
We all need to post here, mine is the oldest here and definitely the road less traveled has been rough and its going to get extremely rough again in a few months but I'm trying to be positive trying to believe it will all be okay, but the reality is it probably wont be. Some administration changes in our district that will create huge issues.
Mine has multiple challenges, maybe not all physical but she is definitely complex.
It doesn't matter if your child has add, or a multiple of challenges.
Please post and I will do my best to check in more often.
Later today I will post her story briefly just in case it helps someone.
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Post by Clara Hinton on Jun 16, 2010 17:09:14 GMT -5
Dear SG Family, You have definitely answered my question. I can see that there is a need and a desire for this board to stay, so it defintiley will be here for you! I have often read your posts and offered prayers and thought to myself about what special parents you all are -- truly heroes and angels on earth. I cherish each and every one of you and each and every one of your special children. Please know that I feel it is an honor and a privilege to have this special board for you here on on SilentGrief. Love, Clara
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Post by msmarib on Jun 17, 2010 13:44:21 GMT -5
Clara, That made me cry. I've never been called a hero as a mother of a child with ADHD. I've been told 1000's of times that I'm not parenting my child correctly and he's been kicked out of so many daycares and camps. What a treasure to hear/read, just once, that I'm a special parent and a good one, too. Thank you, Mari
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Post by Clara Hinton on Jun 17, 2010 19:40:14 GMT -5
Dear Mari, It is in my heart to write a book called about our everyday heroes, and when I do.....YOU, my very special mom, will be in this book! There are so many parents such as yourself who are facing battle fatigue every day of your lives, yet get no real badges of honor, no newspaper headlines, and no seats up front in the auditoriums where the awards are given out. You know what I'm talking about.
The more I go around speaking at colleges and hospitals and different schools, and the more contact I have with parents such as yourself (as well as the children), the more convinced I am that you have not been given the validation and praise you need and deserve.
I feel honored to know you and the many, many parents such as yourself.
Love, Clara
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