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 Post subject: Parents Rights
PostPosted: Wed May 23, 2007 6:42 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
I found this on another forum and found it interesting, I thought others might to.
Quote:

Parent's Rights

Many professionals talk about parents going through something called "the grieving process" when they learn their child has special needs. According to this theory, parents first go through a stage of shock. This is followed by a sense of sorrow or grief, where parents are thought to mourn for the loss of the "normal" child that most parents hope for and expect. Then comes
denial, where parents deny that their child has special needs, or perhaps seek out other doctors to get a second, third, and fourth opinions. Anger and resentment come next, and then, finally, comes acceptance.

These stages - shock, grief, denial, anger and acceptance - are often used by the professionals who interact with you and your family to describe your feelings and sometimes your actions. The grieving process is only a theory, but it is widely believed, and you may, in fact, have all these feelings.
But you also have certain rights:

1. The Right to Feel Angry

Nothing in life prepares anyone for having a child with special needs and when it is your child, it seems all the more unfair. You did not ask for this, and there is very little you can do to change it. Your sense of
control over your own life and the life of your child is at risk. Be angry, but use your anger to get the best services you can for your child.

2. The Right to Seek Another Opinion

Everyone is told today that it makes good sense to seek a second opinion before having surgery, or before investing money, or before buying a used car. It should not be any different for you and your child whether you are looking for medical care or an educational program. If you hear of a new
treatment that might help your child, why shouldn't you look into it?

3. The Right to Privacy

Many parents have talked about the effects a child with special needs in the family has on family members' privacy, because a child with special needs suddenly brings into the family circle a series of professionals who examine, give advice, and sometimes even judge the actions of the individual family members. One parent said that the hardest part for her was "having to turn to experts - it was difficult to have to have someone else tell me what
to do with my child". some aspects of your life are simply no one else's business. If you do not want to discuss something, or if you do not want your child's picture taken, it is your right to say "No".

4. The Right to Keep Trying

Parenting is not easy, but all parents do try to do the best job they can. It sometimes becomes harder when well-meaning people tell you that you have set goals that your child will never be able to reach, or that you must
stand back and accept the fact that your daughter is multiply handicapped and will never be able to walk. There is nothing wrong with you if you are not will to give up. Your child has the greatest potential for learning now, in the preschool years, and no one knows what event or combination of
events will make a difference for her.

5. The Right to Stop Trying

Well-meaning friends and professionals have also told parents that they do not work often enough or long enough with their children with special needs. "If you would just do this at home for 15 minutes a day on the weekends, it would make such a difference." The truth is that it could just as easily
make no difference at all. YOU are the one who lives with your child, YOU are the one who is being asked to do just one MORE thing. If you cannot do it tonight - okay. This is your decision.

6. The Right to Set Limits

There are limits to what one person can do; you shouldn't expect yourself to think about your child all the time. And your child shouldn't expect to be the centre of attention. You have limits, and your child has limits; learn to recognize both, and give yourself a chance to examine the situation
before responding in anger or fatigue. You are not SUPERPARENT.

7. The Right to Have Fun

You are not your child's therapist or teacher - you are Mommy and Daddy.
Therapy and educational activities at home are certainly beneficial but you and your child need time to fool around, giggle, tickle, tell stories, and just do nothing. Those times are an important part of your child's "education" and the love and social skills learned by them will stand her in
good stead for the future.

8. The Right to be Unenthusiastic

No one expects you to be "turned on" all the time. Sometimes you feel sad or you're worried about money, or your child, or you feel sick. If other people take that as a sign that you're "not adjusting" or that you're "not accepting your child's handicap", that is their problem. No one is excited
about work every day; it can be tedious one day and new and interesting the next. The same is true of parenting: there will be days when your child thrills you with joy and days when parenting will seem like the most boring
job on earth. You have a right to be "up" sometimes and "down" others.

9. The Right to be Annoyed with Your Child

There are days when you like your child and days when you don't, but that does not mean that you don't love her. Children with special needs are just as capable of being ornery as other children, and they should be
disciplined as any other children.

10. The Right to Time Off

You need time to yourself, time with your spouse or partner and other family members, and just plain time without kids. Many parents describe the first time they went to the grocery store alone after their child was born as a tremendous feeling of freedom, even though they were doing a chore, and even
though they didn't talk to anyone but the checkout clerk. There are many parts to your life, and each deserves as much attention and nurturing as does your child with special needs.

11. The Right to Be The Expert-In-Charge

You know your child better than anyone else: you spend the most time with her, you have lived with her longer than anyone else, you know what works and what doesn't. Support personnel come and go, but you are the expert
with the experience and first-hand knowledge about your child. And, as the expert, you have the right to be in charge of your child's educational, social, and medical decisions - at least until she is able to make them herself. Professionals do not live with the consequences of their decisions, so while you might want their opinions, remember that they are only opinions and not facts. They should not tell you you're wrong, that
you will regret it, that you're selfish, or that you're not looking far enough ahead. Nor should they make you feel guilty or pressure you into a decision. Parents are the single most important resource that children have.

12. The Right to Dignity

You expect to be neither pitied nor admired, but you do expect to be listened to and taken seriously. You expect the truth - from doctors, teacher, social workers and therapists, who are there to help you; from
your friends and neighbours, who owe you a chance to be someone other than
"parent-of-a-child-with-special-needs"; and from your family members, who love you. You deserve to know why the doctor is looking into your child's ear; if she doesn't volunteer the reason, ask her. You deserve to be talked to as an adult; if you feel a teacher or a therapist is talking down to
you, tell him so. Sometimes, when you are the parent of a child with special needs, you have to risk being aggressive in order to obtain the dignity that is your right and your due.


None of these 12 rights apply just to parents of children with special needs; all parents share certain common experiences, whether they have one child or ten, and whether one child or all ten have special needs. You cannot forget that you are an adult with your own needs, desires, hopes and dreams. Enjoy your individuality - and enjoy your child.

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject:
PostPosted: Thu May 24, 2007 12:16 am 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Wow - that's a great Bill of Rights! I think I will have to print it off and post it on my office wall. And perhaps provide each member of the OASG with a printed copy. ;)

Was it written by someone on the other forum? Or did they get it from somewhere?

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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 Post subject:
PostPosted: Thu May 24, 2007 6:52 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
It was posted Juy 8, 2001 on the specia needs forum at Canadian Parents Onine. I sent the poster a private e-mail asking her for the source.
It's is a great place for discussing parenting issues with a broad range of Canadian parents.
I have been trying to keep the bill M210 information current on their allergies board.
http://www.canadianparents.ca/CPO/

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject:
PostPosted: Thu May 24, 2007 1:33 pm 
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Joined: Mon Apr 11, 2005 9:38 pm
Posts: 923
Location: Oakville, Ontario
Thank you for posting this Susan - I've also printed off a copy for myself. My son has special needs in addition to his food allergies (although, the food allergies weigh most heavily on my mind), so it's good to keep all these things in perspective. We've seen so many doctors and specialists with our son, it's amazing that he continues with his amazingly positive attitude. The one very positive comment I have to make about all of the doctors and specialists he has seen... because they are in the pediatric field, they are AMAZING with children and their families. We have received incredible support everywhere we turn, so we've not felt isolated in dealing with his needs. Fortunately, our son seems to be catching up in most areas, and we owe it to the incredible people we have seen.

_________________
15 yr old daughter: no health issues
12 yr old son: allergic to peanuts, tree nuts, eggs, fish, sesame, sunflower, mustard, poppy seeds, green peas, some fruits, instructed to avoid all other legumes (except soy & green beans), pollen, cats, horses


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 Post subject:
PostPosted: Mon Jun 04, 2007 11:07 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Still looking for the origin of this and came acrosss this article. It seems to have been taken, paraphrased one might say.
http://www.ucp.org/ucp_channeldoc.cfm/1/11/51/51-51/775

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject:
PostPosted: Thu Nov 27, 2008 12:32 pm 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Bump!

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject:
PostPosted: Sat Apr 25, 2009 12:26 pm 
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Joined: Thu Feb 26, 2009 12:05 am
Posts: 641
Location: AB, Canada
Thanks for posting this. :)

_________________
DSs 7,7,9 all PA


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 Post subject: Re: Parents Rights
PostPosted: Fri Apr 09, 2010 11:06 am 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Time to bump this again!

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject: Re: Parents Rights
PostPosted: Fri Apr 09, 2010 5:45 pm 
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Site Admin

Joined: Mon Feb 07, 2005 6:39 pm
Posts: 2943
Location: Toronto
It is a great list.

_________________
Allergic to soy, peanut, shellfish, penicillin


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 Post subject: Re: Parents Rights
PostPosted: Sat Apr 10, 2010 8:15 am 
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Joined: Fri Oct 10, 2008 9:40 pm
Posts: 2034
Location: ottawa
I meant to print this list for myself last time I read it. Thanks for bumping it Susan, It is really a great/meaningful list. :thanksign

_________________
DD 12 yrs -no allergies
4 yr old DS - asthma/eczema Anaphylactic to Peanuts, all tree nuts, sesame , all pea/lentil legumes, gelatin.
Allergic to trees, grass,ragweed, feathers, dander, mold and dust.
Outgrew eggs, fish, shellfish


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 Post subject: Re: Parents Rights
PostPosted: Mon Feb 14, 2011 7:41 am 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
Time to move this up again.

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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 Post subject: Re: Parents Rights
PostPosted: Thu Apr 04, 2013 8:02 pm 
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Site Admin

Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6455
Location: Ottawa
I think we need to be reminded of this from time to time.

_________________
Moderator
Daughter: asthma, allergies to egg, milk, peanuts, tree nuts, most legumes (not soy) & penicillin. Developing hayfever type allergies.
Husband: no allergies
Me: allergies to some tree that flowers in May
Cat: allergic to beef, pork and lamb


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