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Today I met with my sister,excited i was ,for i haven't seen them in quite some time. But to my dismay my niece is now 13 and has a speech disorder and has the demeaner of a four year old. My sister is home schooling but this my be a bit much for her.She appears to be depressed and very sore on the subject of her daughter,but I pressed the issue and she believes her daughter is fine,even though they are like hermits. She refuses to seek outside help an advice.My concern is for the child and her future.How do help her and my sister

Hello,

Thanks for writing for information on how best to support and encourage your sister and niece.

Families are complicated organisms and sometimes it is difficult to develop healthy and nurturing relationships after a long absence, or maintain them if you live right next door.

It could be that would your sister most needs right now is a non-judgmental, pleasant and supportive interlude while you are getting used to being around one another.

Likewise, with your niece, it might be more important to find a way for her to communicate with you without relying on words, to leave your expectations on the doorstep and be attentive and interested in her as a delightful person. She may not readily show her most positive attributes, skills, talents, abilities in novel situations.

Children with special needs are children first, just as sisters with dear daughters are sisters first - the best hope for our future is to have a healthier and more accepting relationship with those we love; to worry less about 'fixing' people and work harder on enjoying the time we have together.

Good luck! Keep in touch and let us know how your next visit goes.

Pam W
SE of Seattle

Forgiving Family
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It sounds like your niece has a diagnosed speech disorder? If so, your sister may be having a horrible time dealing with a world that truly wouldn't understand. I know--btdt. Sometimes, we become hermits just because being out in the world is hurtful and even MORE depressing. When confronted with family that don't understand or show concern for how we live, it's easy to get defensive.

Parents of SN children often homeschool because truly, the public schools have a hard time meeting the needs of some of these kids. But moreso because the social and emotional backlash to our kids really isn't worth it and could cause even more stress and depression--not just to the parent, but now also to the child.

For parents of SN kids who are over 5yo, the support is close to nothing. And if you're homeschooling, it's even worse because the schools won't even help. So you are really on an island. Now let's add a society that lacks in social graces or etiquette (aka staring and rude remarks made by people who don't understand and really have no business making comment). And finally, family who don't live our lives day to day... and now you're left defending and explaining to people who are supposed to just love you and help you. And all this time you may still be mourning the loss for the life your child could have; and wondering what other thing you could possibly try to make it better--with no help. Sometimes, not even from your spouse.

Add to it a community of medical and therapeutic practitioners that often push you to doing things that have not been tested and have no promise of a result, but carry serious warnings. And if you refuse, you are left to fend for yourself. Worse yet, if you have a child whose condition is not well understood even by the "specialists".

Who wouldn't be depressed?

If you are concerned for the child and her future, ask your sister what you can do for her. Be there for her. Understand what they are dealing with. Research the child's condition. Find out what the options are. Find out which of these your sister has tried or why she decided not to--and try to respect that these are hard decisions. It's easy to say what you would do if it were you; but often, you really don't know if that's what you'd do until you are there.

Heather,

Thank you for expressing so well what reality is for so many moms of children with special needs. We are doing better now than any time in the past in working with siblings of children with special needs, but I wonder if there are any resources for siblings of parents of children with special needs. Those who may have the same questions and concerns as the original writer of this message thread will find great insight through your response.

Thanks again,

Pam W
SE of Seattle

Sibling Support and Rivalry - Brothers
and Sisters of Children with Special Needs
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I honestly don't know about sibling support as I only have one biological child and my foster children are usually not here long enough to need that kind of support. Plus, my son is no longer as severe as he was.

There has been an incredible uprising of groups dedicated to helping SN children cope with the world--social groups, private therapy groups that reduce the cost of individual therapy, etc. It won't be long before sibling support crops up. It wouldn't be hard to find an MSW/LCSW to lead a group of siblings that off-shoot from a parents support group.

I have some resources for Sibling Support listed at the articles
Brothers and Sisters of Children with Special Needs
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