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Post by my4boys on Sept 11, 2006 13:40:35 GMT -5
I am posting this here, because I need to. Am I alone in this? I am feeling guilty for posting here, after reading about the troubles your other children are having. Lily' seem so "small" when compared to others. i am thankful and feel tremendously blessed that she is doing so well!
Yet, I still have the fears that many of you do. Because her future is unknown. Anyway, do I belong on this forum? I certainly dont want to upset anyone here. I know that there are so many special needs, both big and small. I feel guilty for worrying about Lily the way I do, when I know she could be so much worse. Do I have a RIGHT to worry about her? Does that make any sense? Should I just count our blessings and get over it?
These are the thoughts I have at times. you know? I am terrified that she may need another surgery, then I tell myself, "so what...atleast she can walk". Or I am scared to death she will get early onset Arthritis, then I think "so what, she can still do things". But I still fear for her. I still feel like I have lost something too....is that okay?
Is it okay to be concerned with little things (huge to me) when so many of you have much larger issues to deal with?
Anyway, these are the thoughts that run through my head many times. My niece, Chloe, is 14 and has severe disabilities. Because of this, I feel SO guilty talking to my sister (her mom) about Lilys dr appts, etc. Although she has never made me to feel bad, and says she understands, and I know she does. It still makes me feel selfish.
I guess what I am asking, for those of you that do have children with far bigger issues, does it bother you, that those of us with "smaller" things come here?
I am asking because I think this can be a GREAT forum!!! And I want everyone here to get the support that they want and need! And I would HATE to take away from that!
I hope this made sense.
Blessings~ Wendy
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Post by Corinne on Sept 11, 2006 14:19:10 GMT -5
Wendy, I had started to reply to your other post earlier when I was interupted, came back now and saw this one.
First of all, when we become parents, any issue that our children deal with out of the ordinary become MAJOR to us. Any illness that threatens our children worries us.
I have an older daughter, Amanda, who is not special needs, but she does have asthma. There were many times during her younger years that we needed to get to the hospital. It was so scary.
Then, my son, David, who is this strong, big, 6 foot 2 inch 200 pound healthy as a horse 18 year old. This past March, his lung spontaniously collapsed. He was in school taking a test, no warning. He had lung surgery. I can not tell you how petrified I was. In a sence it was a reality check for me. Never in a million years would I have expected this child to have issues with his lungs. There was no explanation. He had blisters that bust. Never knew they were there.
Anyway, my point is, as a mom, you are dealing with current and possible future issues with Lily. Even if right now they do not seem as severe as other's, they are your worries. They are issues you want and need support for and that is what this board is about.
So, I say, sure, you belong here.
Now I have a confession to make to you. I hope you will forgive me. I never knew Lily's history until reading your post today. I did read another post from you about her possibly needing glasses. Without realizing everything she has been through, I will admit my first thought was "I wish that had been Tim's only problem" I am sorry, I jumped to conclusions without knowing the full story.
I wish you the best with Lily. I wish your sister the best with Chloe. I hope your sister knows what a compassionate sister she has.
Corinne
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becca
Full Member
Posts: 471
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Post by becca on Sept 11, 2006 14:41:20 GMT -5
I agree that you do fit in. I could have written your post ... as Robbie doesn't have any "special needs" that are visible to the average person we run into. But, his teachers know it, his ped knows it, his parents know it, and his speech therapist knows it. I, too, feel blessed for his physical health. He is rarely "sick," though does have some breathing issues that indicate possible asthma, but are getting better as he ages. We are hoping that they are just seasonal/environmental allergies. Like someone else said, I worry about Robbie's future. I worry about getting him the best possible educational interventions as early as possible so that he has a head start on each grade level as they come along. The experts working with Robbie tell me that keeping him on top and ahead of things in the education world is KEY to his success in school and in life. He has to feel successful or he gets frustrated and the behavior gets bad and the language skills go south. The last thing he ever needs is to feel like he is "behind." This will take a lot of work and help over the years. I envision us working summers to get a headstart on the next grade level .... which is of course much better than summer school to catch up.
So, yes, there are lots of definitions and make-ups of a special needs child. You and your Lilly fit in here, just like Robbie and all of the other children mentioned so far. I am part of another forum for special needs children, and it's been such a blessing. I think we will find that while the exact challenges of our children are different, the feelings surrounding those challenges are much the same.
Hugs,
Becca
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Post by babs on Sept 11, 2006 14:58:46 GMT -5
OK, being the mom of a very special needs baby here's my two cents....... Yeah, I have looked at people's posts and thought oh how I wish it were all I was worried about.No one in particular, just posts. But ya know, we are all parents who love our babies and want the best for them. ANY deviance from the 'norm' (and I put quotation marks around it cuz I have realised that every one has a different normal) is scary. My oldest son has problems with his ears that are a drop in the bucket compared to my B's problems, but that doesn't mean I worry about him any less than B. I think that if you feel like something is out of your control and it's scarey as far as your children are concerned- you're where you should be right here. ;D
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Post by wuvmyangel93 on Sept 17, 2006 3:43:41 GMT -5
I am a mum with a very very complex child. Unlike bridget, emily and brody she did not spend time in the NICU you as a newborn.
She has had numereous surgeries/hospitalizations, been in the PICU a few times, has had many ct scans, mri's, and an eeg. Gone through more barium swallow studies than any young child should, been through the gammit of testings etc.
Almost died more than once as a newborn, and has a super paranoid dilligent parent. I have only felt safe to work outside the home the last 3 years and a bit when she was younger.
And yet with all her issues and the complexities I believe everyone belongs here.
NO ones child is anymore special than another, they all have special needs.
Many of our kids have hidden disabilities, the emotional or learning issues NO one really sees, and many have health issues.
A special needs child is any child that will qualify for special services, an IEP or a 504 in school and if your child has any issue medical or physical they will qualify.
The federal definition of a child with special needs to qualify for an IEP is one of 11 disabilities that impact the child's ability to learn or that of another student.
The 11 classifications include medical, autism, developmental delays, perceptual communication, speech, hearing, vision, emotional etc.
All parents of "special" children are welcome, even those that only do daycare or teach special children are welcome.
I would love posts from teachers that teach our special little ones as well.
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