The Family Voice

Many family members responded to our recent question in our newsletter, "Connecting":

If you are an adult sibling of someone with a disability: 
Q: What supports did you have or wish you had?
If you are the parent of a child with a disability who has brothers or sisters:
Q: How do you think your child feels about being the brother (sister) of someone with a disability?
Q: What are your main concerns for the sibling(s) of your child with a disability?

“I never minded helping my brother with his challenges – but it’s nice to be thanked from time to time by my parents for the contributions I made”

I do not want my son to feel guilty about wanting his portion of attention from the family.  I want my son to feel valued and loved equally with our disabled child.  I do not want my son feeling obligated for the whole world of disability, but have a healthy sense of what is the right thing to do and say when challenged with a situation dealing with disability.

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I think my daughter has adjusted quite well.  However, as she has gotten older (15) I can tell she is wondering if she could have the same things wrong with her.  Other than that she has adjusted quite normally and they have a great typical bro/sis relationship.

It might be good for her to have a group of other kids she can talk with that will talk about the issues and fears they have.  It is possible that she thinks things but does not talk about them and maybe hearing that others have to go through the same thing or worse might be helpful to her.  Also, I am concerned for her and when we are gone that she will have to take care of her.  She is the only child other than him and I do not want her to feel like it will be a burden for her when/if the time comes. 

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I am so happy to see an interest on siblings of people with different abilities. That has been a very big concern of mine as a parent because we get so wrapped up with our children that need therapies,IEP'S,ISP'S, CFT'S the list goes on and on. Then we at times neglect our other children who also need alot from us. .
We have had many conversations with my other 2 children and there is a tremendous need for us as parents to be more understanding and considerate of our typical children. Many times I feel they are burdened and worry for their siblings because they are not sure what role to take.Our children love Joshua our oldest with autism but they still have a hard time dealing with our world revolving around families of kids with disabilities yet our children know so much more and their world has been enriched because of this also. For me as a parent the hardest part is balancing some special time or projects just for our typical children,right now basketball is something fun we do just with them. One of the hardest things my middle child complains about is that it is still very hurtful for him when people will laugh or make fun of Josh and he is learning how to cope with it.We tell our children we are here to help people understand more about people with different abilities and we don't have to get upset or sad we need to talk to everyone we can and let them know that everyone is different and once they get some knowledge they are ok. I think I can go on and on about this but I don't want to exhaust you with just my story.

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(How do siblings feel): They love them and dislike them sometimes at the same time, just like all siblings since the dawn of time, only someties they feel guilty when they get mad at them for something related to the disorder. 

They wish they had a "normal" sibling who didn't have the disorder.  They feel like the sibling with the disability doesn't love them and that there isn't that bond they see with friend's and their siblings.

(Main Concerns): They try to overcompensate for the tension or drama in the family by trying to be the "perfect child" or the "easy child".

They will resent their sibling and a strong bond will not form between them.

That they don't count or aren't as important and they will act out or try to create situations where they are the center of the attention.

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Each sibling responds differently...my older child seems to resent the extra time needed to support his younger sister.  I'm not sure if I would call it "jealousy", but I think he wishes that we would hover over him a bit more.  I also wonder if he suffers from occasional "survivor guilt" and the fear that he may have a child somday with a disability?  My other daughter is very compassionate, sensitive, and patient with her sister.  Having a sibling with a disability has opened her eyes to a world full of individuality.  She has a huge heart and is very accepting.

I am learning that each child needs to be recognized whether he has a disability or not.  The healthiest, strongest child might end up needing the most reassurance and praise of all.   I don't want my kids to be fearful of having their own child someday.  I don't want them to "pity" their sibling or those with disabilities.  I would rather  see them  channel their concerns and frustrations into  becoming proactive advocates. 

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My daughter has learned patience and empathy.

(Concerns): That my daughter will have to take care of him when I am gone.

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My main concern for the sibling of our child is the responsibility her feels for the future. He knows that his sister is his responsibility after his dad and I are gone if she outlives is. That is my primary concern. Maybe a social worker from the DDD to provide counseling for him (us when he was in elementary school.) Now he is ok and past it.

I have been thinking about these questions and I would like to respond, as a parent and sibling.
Thanks for the opportunity!

Q: What supports did you have or wish you had?
As a child I often felt like what I achieved or accomplished was no big deal, since after all I was 'normal'. It was just expected. Furthermore, when I did win a prize or something like that, my brother was given a prize too, which I felt cheapened my prize. I wanted to be recognized and praised as an individual for who I was. It seemed to me that I was always secondary to the other more pressing concerns that my mom had. I also really wish my mom had talked with me about my brother and how to handle the whole situation. I was more on less on my own in coping and responding to others.

Q: How do you think your child feels about being the brother (sister) of someone with a disability?
Since my 3 year old really can't answer this about his 4 year old brother, I will speak from my experience growing up. At times I felt guilty, similar to the notion of 'survival guilt'; I should just be grateful for being 'normal' and not complain about anything or ask for anything. At times I could be embarrassed by my brother and his more obvious difficulties and differences; I didn't want to be seen with him or known as his sister. I felt cheated by not having a 'normal' sibling relationship, which to this day bothers me occasionally. I could be jealous of the special attention and treatment he got. But I think the overriding feeling has always been that of protectiveness of him- not wanting him to be hurt by other kids, be it emotionally or physically- and feeling sorry for him that he was not able to do things that most people take for granted, and knowing it. Also to this day, I worry about people taking advantage of him.

Q: What are your main concerns for the sibling(s) of your child with a disability?
My main concern for my younger son is that he grows up feeling secure about who he is as well as who his brother is, empowered with knowledge to fight stereotypes, ignorance, and those who may be ill-intentioned. I want him to be able to vent his frustrations to his dad and me, and to be his brother's champion and helper, while having his own individual and equally valid pursuits.

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How can I respond effectively when people comment on my child’s disability in public?

Answers:

I cannot be certain that the question relates to a disability like autism or Asperger’s ( which has few visible marker’s for the general public) but for the sake of this response, I will make that assumption. Comments about your child’s behavior in public coming from a complete stranger can leave a permanent scar on a parent’s heart. These comments are said without any forethought, planning or knowledge of the real situation – and therein lies the problem. The sender of the thoughtless comment only “thinks” they have all the information to base their judgment on you. They are unaware that the typical looking child they are criticizing may be an individual with a neuro-biological disorder. In other words their eyes are not telling them the whole picture.

If a response is what you would like to do in the moment, I would suggest you exercise caution. Like the accuser, in that brief moment we do not have all the information we need about that person – they may be volatile, inebriated or the like – we just don’t know. If you feel you and your child are in a safe situation perhaps a brief, controlled explanation is in order which establishes that eyes can be deceiving and what your child struggles with is autism and right now they are acting out from too much stimulation etc. Now here’s the fun part – thank them for their interest in your child and suggest to them that if they are so concerned about your child’s behavior they might want to make a donation to an organization ( of your choice) that is dedicated to research and support of autism/Asperger’s. There are in fact, quite a few sites on line that explain everything I have stated on a small “credit card sized” script that you can down load, laminate and keep in your purse or wallet to hand out to people in just this type of situation.

Carolyn

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My daughter is in a wheel chair and is verbal so as soon as she could talk, we encouraged her to answer questions regarding her condition. She has always been very involved in her care and has had input when we went to the doctor. Having her answer questions regarding her condition has boosted her self esteem and shown people that disabilities don't always have to limit a person. It also gave her a chance to interact with people.

We have found that most of the questions come from children and the adults just tend to look. They want to know how she does her daily activities, like eat, bathe, etc. She had a lot of questions from classmates when she started school so she made a video of her typical day and brought it to school to demonstrate how she lives and how she does the same daily activities as they do, but with modification to accommodate her disability. If the questions were more than she could answer, my husband and I could jump in and answer them, but we usually let her do the talking.

Claudia

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when my daughter was younger i felt i had to prove how special she was with a line something like how lucky i am to have been blessed with a special gift and grateful for all the lessons she has taught me...now she is twenty one and quite the actress i just watch her win the hearts of others with her special charm...and we all know kids with Down syndrome have a special charm!

Kay

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I have had several opportunities in my son's life that I have had to answer questions from strangers. When my son was 3 yrs. old, he wore AFO's to help straighten his legs. Little kids would ask "What's wrong with his legs?" and a simple answer of "His legs are a little crooked" would satisfy their curiosity. A very rude parent just blurted "What's wrong with him?!?". I remained patient and educated her on his condition. I did not take it personally, which helped greatly. Besides his eye glasses, there is no other physical condition that brings up questions or stares at this point in his life. Many times I still get asked what his diagnosis is, and I faithfully answer all the questions. I feel the majority of people are uneducated to children with disabilities and they just need more information, even if they don't ask in the most polite way. Whenever I have been offended by someone's insensitive comments, I just become even more sympathetic and understanding to other families of children with special needs.

Danielle

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Before answering a person has to evaluate the context, place and person making the inquiry about the disability. It is best to keep a cool head and think before answering any comments. If a disturbance is being created in a place where it is impossible to explain without increasing the level of disruption; the best solution is not to offer any explanation, just say you'r sorry for the disturbance and leave. If this is not feasable then try to contain the situation and disregard any further questions. When being questioned by an adult , the best solution is to try to be as informative as possible (without invasion of your privacy), in this way you are acting as an advocate  in providing information and understanding to the public. I have found that most people appreciate being informed and become more tolerant of the handicapped. If the comments made by an adult are derogatory and humiliating, the best thing to do is to ignore the person, since most of the time these type of people are insensitive and looking for a confrontation. If the comment is made by a child,  it is a  natural curiosity for them and the best thing to do is to explain as simply as possible .  The best rebuttal in this type of siituation is to be well informed about the disability and patient. since some disabilities are self evident, most people do not ask questions. For those which are not immediately self evident , questions may arise which place you in the role of a complacent parent and not caring about her childs' behavior. In this scenario, attend to your child and then offer an expanation. Each situation is different and calls for varied ways of dealing with them. In all situations the best recourse is a level head, courtesy, your childs' needs at the time and being informed. By being informed I am also including how to deal with your child in a stressful situation; not just the data on the disability. 

Iris 

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Humor always worked for us.  My daughter’s smile and twinkle in her eyes after a joke always melted the worse cynic.  Humor provided a protective shield that bounced back the hurtful comment and made us act in a positive manner that won over many friends.

Jane

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When people comment on my children's disabilities in public I usually use it as a chance to educate people.  I apologize if my child's behavior is bothering them, and then explain that my child has autism and it is beyond their capabilities to control themselves sometimes.  If the comment is rude or unpleasant to an extreme degree, I usually try to ignore the outsiders.  My number one priority is to get my children through the difficult situation with as little drama as possible.

Lisa

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Honesty, it can part of the “educational” process for people who are not familiar with the challenges of families who have special needs children.

Lydia

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My situation is more unique because I too am often stared at, along w my daughter.  I usually go over to teh kids and just start a dialog of hi, what is your name, ect.  Then I let them know we are all diff sizes, colors, ect.  Priya is 5 but just smaller than you.  But she is able to do everything that any other child can do.  I think taking time to talk to them breaks down some fears and natural curiosity that kids have.  Then the next time they see someone different, hopefully they will not point and stare.
 
Mark

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My son has a t-shirt that says “My special needs are just more obvious than yours.”  If he’s not wearing it, I try impart the same sentiment in a humorous and/or non-threatening way trying hard to remember that I, too, was once one of the unenlightened.

Maureen

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I always tried to make this a positive experience and use this time to educate.  If they ask about our son's lack of speech or his cognitive issues we would always say the yes he had an intellectual disability but has so many gifts in other areas such as being a great athlete and all the things that he had accomplished and what he could do.  It changed the way the person or group viewed him and gave them a sense that just because a person has a disability they can do so much and contribute and be such a participating member in the community.  This usually opened up a lot more questions that people are scared to ask so we could even address other questions. 

Michael

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The most effective thing to do when someone comments on your child's disability in public is to try to educate them.  Most of the time rude or unwanted remarks stem from ignorance so you may help them to learn something new.  I have heard of people carrying a packet of brochures just to hand out when this comes up.  Many disabilities are not as obvious to strangers such as turrets or autism.  They just assume that your child is misbehaving.  So any information you share with them may help someone in the future deal

with an encounter with a disabled child/person in a more positive way.

Michelle

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I have found that responding in simple terms and using non-medical language is most effective, and the least intimidating to people that we meet when we are out.  Children are especially curious and innocent when asking about Annie's braces, therefore, answering them in kid friendly ways seems to work best and makes Annie feel most at ease.
It seems that people are truly surprised when they learn that Annie has no mental retardation or developmental delays despite having Spina Bifida.
Annie's smile and intoxicating laugh seems to win just about anyone over!

Nannette

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We’ve frequently found that children often stare or comment about our son, Aaron, who uses a wheelchair.  If time and the situation permit, in a friendly manner I ask them if they’d like to ask Aaron any questions about his wheelchair or himself.  My purpose is to both acknowledge that I/we know that Aaron’s physical situation is not typical and that I/we realize that people (especially youngsters) are curious.  Once people are able to talk with Aaron (who does have some speech impediment but generally can be understood when he speaks slowly) and realize that, in many ways, “he’s just like them”.

I like your new feature as it gives parents a chance to share our perspectives and suggestions while learning from one another.

Shari

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This is a great question, one I have struggled with for years.  Since my son is now 15, I am starting to hit veteran status…and for me it depends on how “rude” or how ‘sincere’ a person is.  The majority of comments are rude…and the first thing to realize is the problem is not you and your child. The problem is with the person who is being rude. Sometimes the best response is no response, especially if the person is just blatantly mean.

However, when people are sincerely asking to be educated, I will tell them my son has autism, a developmental disorder that affects his communication. I also tell them how they an get more information on the web.

Tammy

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Do you want your voice to be heard?

This is a place to share your thoughts on issues related to raising a child with a disability or special health needs with us. Comments may be published on this site or in printed materials.

Please send your comments to info@raisingspecialkids.org and include "My Voice" in the subject line. It would be great (but not required) if you include your name and phone in case we have a question.

Raising Special Kids does not speak for parents, but seeks to inform and raise awareness about the common concerns and issues that affect the lives of families raising children with disabilities in Arizona. 

Sometimes parents need to speak as one voice, and sometimes we need to reflect our unique and individual experiences.
 
Your voice is important.  

We welcome your comments and input on some of the important issues facing parents of children with special health needs.  If we have significant input on a single topic we’ll share those concerns with decision-makers in our state.  If you need a response back from us, be sure to mention that in your message.

Here are some topics of current interest to families in Arizona.

• Early Intervention services (birth to three) and AZEIP Re-design
• Day Treatment Programs for teens and adults with developmental disabilities
• Advocacy and the Complaint Process in Special Education 
• Eligibility and access to state programs and services