Special Needs Kids & the Extended Family

I'm not a parent of a special needs kid - but I have 2 close friends with autistic sons and other friends with kids at various spots on the Asbergers continuum. Our church is very friendly to special needs families, kids and adults. We have sunday school classes and one-on-one aides if needed, we have special "Hugs" programs about 4 Saturdays a year that draw hundreds of people form the metro area.

What I've found over the years is that there are people who are willing to learn and are plialbe and open to your instruction and they will be valuable allys to you and your family. And there are others who think they know everything - and that kids like your son just need "their" brand of parenting to be the perfect kid. They will never read anything you give them since they "already know everything they need to know". Ignore them - they won't ever be converted. ;o)

You are doing a fabulous job for your child and that's all that counts.

(Also, BTW, one of my friends took her 6 yr old autistic child off all gluten and artificial stuff and he's improved quite a bit - her other son never had the senstivitiy but he's on the same food plan to be supportive to his little brother.)

Unless they stay with you for a long period of time, it just won't sink in for most of your relatives. My father, who adores my children, kept hassling me about treating my son like he was "special" before we had a diagnosis. It was hard to accept that my daddy didn't know what he was talking about!! You are the absolute expert on your children. You know each of them better and more completely than anyone else ever can. That said, your childen can also learn a lot from interacting with others who also care but may not truly understand. I carefully observed family interactions until I was comfortable with which people could handle the safety issues. My son is now 9 and has a formal diagnosis. He just spent 4 days with his aunt in another state. She did things differently than I might have, but my son was safe and happy and learned from her style, too. I hope that as your son matures a bit, he will have that kind of closeness with some relatives-- for his sake and yours! It was a real treat to have a little break (even though I missed my son) and his little sister got the kind of undivided attention she seldom gets when her brother is around. Best of luck. I'm sure your family means well, but I understand how frustrating it is to hear "When I was raising children, they NEVER behaved like that," or "If you would just..... he'd be much better." Argh!

Hi L. - It's a shame people are so oblivious.........There are some great reources out there, so in case you have not heard about these, let me share: autismclassroom.com and Real Look Autism - find it on Facebook. Maybe these sites can help you connect with others in the same boat. Good luck!

honestly, it sounds like this particular family member has some problems of his own.. mental ones. it also sounds like this particular person gets a sick trill out of seeing your son struggle, dont leave your son with this guy, there are people out there that enjoy watching the disabled struggle for as normal a life as they are capable of, and this family member is more then likely one of them. and yes, i can say that ! i am disabled and i have dealt with people like this guy, they are nice to you( the disabled), but the moment they dont think they are being watched, they taunt, threaten and mimic you. dont be fooled, this guy has a problem, dont allow it to become yours
K. h.

I would just try to be gracious and accommodating with them (I'm sure you are), and recognize that they have not been literally steeped in these issues they way you have. But I would not let people, no matter how well-meaning, take over a situation that they don't have any experience handling. Small doses of new experiences are fine, but I would go slowly.

Good luck and lots of hugs for you.

I think you are on to something with a short one page list of some things that anyone in contact might want to know about your son. I am majoring in Special Education at UNL and I also have a son who is diagnosed with a form of Autism (PDDNOS). In one of my classes we learned about the sheets that you talked about with a short, concise bit of information that can be given to a caretaker about the child. I think it can be a valuable piece of information. I can see why maybe some did not read the book as some people simply are not readers and some are.

I too, I have struggled with people understanding my son's diagnosis, especially my ex husband. My son needs a lot of planning time and if he is not told specifically what will happen he can fall apart. We are always "checking our schedule" where I will hold up my hand and use my fingers for 1, 2, 3, and I will say, first we will do this, then we will do this, etc. It helps him SO much. So my ex will want to throw a curve ball, which I realize happens in life sometimes, but it's a fine line on how much to do. So I can see your concern that your son was left alone in an unfamiliar environment. That can be very hard for a little one!!!

I felt for you when I read about your church situation and I hope your family member never puts her fingers over his mouth again. My son stems a lot and flaps. I have weighted blankets and we do compressions for the sensory input to help it, but he still looks like he is attempting to fly. I realize that my neighbors below me probably hate me b/c there are times he is flapping and banging on the floor. I try to keep the noise to minimum but I can't be doing that all the time. I had a real witch of a neighbor who doesn't live below me anymore and she complained ALL the time. I told her it's a hard thing to stop and that I try and that he has Autism. She was still a witch and I finally had to tell her that I pay rent too and I have a right to live in my home.

Keep doing what you are doing... you know what's best for your child. I understand the devotion you have and I commend you for it. I think the information sheets are a great idea and so does my Professor who taught them to me!!! Good luck and Best Wishes!

I don't think its realistic to expect everyone to either understand or know how to handle your kid. I have 3 kids and all of them have *something*...retarded, ADD and ADHD. We went to CA this last weekend and went to the beach with friends. One of them gave my retarded dtr a juice box...she can't have any sugar. they were like sorry, sorry...but people just don't "get it" because they are not around our kids. I don't get upset about it, I just try to let them know and keep a close eye on the kids since no one knows or watches them like we do! Good luck!

I know you would like them to all deal successfully with your child, but even in the best situations there are going to be people who are not going to do things the way you would like. You do what you need to do as politely as you can and let the chips fall where they may. If they don't see your son very often, they just aren't going to get it. You can't force them to read or listen to anything but you can set an example. The funny thing with denial, it is what it is.

Lord I don't handle it like you. So you have a Autistic son, you have read books, your words make you sound like you think you are an authority on the subject. My Autistic son is now 12 and I can assure you if life has taught me anything it is that I don't know squat!

Every time I think I have a handle on things he comes up with something new.

I would never be so arrogant as to distribute information and a reading list!

The other thing is you clinging to these therapeutic distraction items. My office thinks I am nuts cause I did laugh out loud. Do you shlep them around everywhere you go? Jeez I have tried and succeeded with things as lame as do you think that lint ball on the floor of the car looks like a cat! It works. Some of the things your family members will try will work.

Instead of limiting yourself to your suggested reading material why don't you open up your own mind to the possibilities that your family presents. If you don't I can assure you your child will eventually.