I know the feeling about the looks, etc. One thing I heard that another mom said to a man at the grocery store who said that her son needed a good spankin' was , "That's why God gave him to me...". I thought that was a good statement without stooping to his insensitivity!
Social gatherings are very stressful. I would utilize the websites given above and really call it as you see it. You are not alone. We are just at a very younger age than your son, but I get the looks and frowns, just as you do. I just take a deep breath and say, "my dd has as much right to be here as your child". Granted, I have to watch her like a hawk, compared to the parents whose children are not affected by this disorder. Good luck and if you go, have a great time. Well w/ me my son hasn't been dx'd yet so I haven't mentioned my concerns to very many. And among the few friends/family I have told, even less are understanding or refrain from unwanted comments. So now I somewhat regret telling those few even. I'm not sure what I'll do if he is dx'd. The center here is calling me in Sept so I have some time to think about it. I'm so sorry you're having troubles wanting to go places because of not wanting to tell people about your son. That must be very hard. But you know, there are many people that are quite understanding about it. When ds was freaking out in Chuck E Cheeses a couple mths ago a lady said she understood because she has a child she thinks might be autistic and he exhibits some behaviors like my ds. She was very very nice. Not like some others that just want to stare and glare and mumble. You all know what that's like I know! I guess I have no real advice, but just wanted to respond. Best wishes to you. Amber I just the most recent 3 replies after I posted my latest reply. I'm on my way out to take DS to the doctor. I'll be back soon. I was wondering if anyone else is like me in that I keep most of my son's issues from friends and family. Only 2 relatives, beside my parents, know that my son is on medication and that he has a toileting problem. ' I have a younger brother, now 28yrs old, who has ADHD and was very hyper as a kid. He was very hyper to the point that he could not sit still and he could be very loud. He is doing very well now, he owns property and is a liscensed Electrician. I am so proud of him, I knew he could do it. When we were kids, most of my cousins couldn't stand him. This is why I am soo afraid that they not accept my son or they will make comments about him. i avoid that side of the family as much as i can because of this. We have been invited to a Birthday Pool Party for Saturday August 13th and i don't wanna go. The main reason is my son's toileting problem. I'm not sure what to do? Any ideas? Thank you , Angela what i try to do is take my son out as much as possible my family and friends are real supportive of thomas . there are alot of unsmart and crule people in this world i live in a small town and get lots of looks and rude comments . If it was me i'd take him to party social interaction is very important but in the end you know whats right for your child best wishes tome wow do I know how you feel!!!!!!!!!!!!!!!! I used to avoid any kind of gathering that might lead to my son acting out or embarrassing us. I have also left many get togethers upset and mad because family members or other parents would make comments or just give me the look. How long has it been since your son has been dx'd ?? I know that after I knew what was really going on with my son I became a stronger person and would just tell them ahead of time what was going on and if he showed strange behavior or was loud and acting out that this is why and I kind of have the attitute that he is human and still my son and what comes along with his disability is not his fault!! My family and friends have been very understanding since they all know he is autistic they often comment on how far he has come and how much better he controls himself. Maybe if they actually know what is going on with your son it would help things ..but face it there are always gonna be ignorant people who need to be educated, but DO NOT let them ruin you and your sons good times ! The worse thing you can do for him is keep him away from social gatherings and get togethers! They are so important for our special kids. Good luck and I hope things get easier for you with your family. Angela, Of course you are not alone! That is the wonderful thing about the internet, we all have support from folks just like or pretty much like us (I dont know what I would do without the internet, info, support boards, etc). My DS started changing around 18 months and I sort of developed a secret life, making excuses and changing things around, anything and everything to avoid being confronted with a friend or family member (we have no super close friends or family, never have and that is by choice, dont like to clean up after people and dont like crowds). Anyway, when DS was dx, I was devistated, even though he had been having EI for a year (see, told ya I was crazy). I then really started to hide the problem, even from total strangers, till I finally woke up and decided that was not for me. I (nor he) had done anything wrong and I was certainly not ashamed of him, or his ASD. So, when folks call or I see them in public, I just tell them that Pooh is doing great and that he has special needs. Most dont want to know more and if they do, I will refer them to the Autism Society of America. I will answer more specific and detailed questions for a few folks, one sister, Mom, 2 dear and long term friends (we only see each other 3 or 4 times a year but they would come to me today If I needed them to). The rest, can look it up themselves, I am busy and I do not feed into their gossip and nosiness (LOL). When we first had our DS, we lost several friends, but it was not because of DS's asd, they were childless (which is one of the things we had in common) and they did not want to spend their limited free time with a crying baby (I wouldnt either). So, I do beleive we loose some friends from that. If you do not want to go to the party, dont. You are obviously uncomfortable with the people involved or you would want to go (or maybe not, I wouldnt want to and it has nothing to do with my son). If you are feeling like members of your family would think less of your child, because he has special needs, do you really want contact with these people? Every family has some of them and mine can just kiss mt foot, I dont want or need them! ((hugs)) if ya want em! Jean Sallys.....I'm so glad to hear that i am not alone in how I feel. I've definetly had some people tell me that there is nothing wrong with DS and others who totally don't understand, give us looks and probably think he is a brat. People's coments do add to the stress. I have one cousin who thinks I should take him to her friend's center for kids with ASD's. Like that is the only place. to go for outside services other than school. Tome.....I am soo happy that your frinds and family are supportive of Thomas...he is a lucky boy. I'm going to try and find away to go to the party, that is the least stressful for me. I could have Quinn wear a small Goodnight's pull-up under his bathing suit so that nobody will notice it. I'll keep you posted momof1 Going out in public was excrutiating in the beginning. I have posted before that going out gave me(asingle mom) to help reinforce therapy goals and build my son's level of comfort with various stimuli. Every OT that I have talked to have encouraged the practice. I increase stimuluas exposure in small increments. There are days and events sthat I know would be harmful and I stay away from those. The devil have the people that have fewer social skills than my lovey. Just yesterday in church me said,"Mommy they are supposed to be lisiening to the preacher, not watching me under the chair. So let me be under the chair when it is too loud." From the mouths of babes... Janet
about the pool party.....you can get descrete swim diapers which fit
inside the swim trunks like underwear. They are
washable and reuseable and hold in anything to keep the pool
sanitary. They are available in all sizes even
to adult sizes from www.kiefer.com.
Many kids love to swim and play in the water and it is really great for
them .....don't deprive him of that fun because of this
problem. I know dealing with other people can
sometimes be hard. I find if I am open and honest
upfront about my kids problems it nips the gossip or talking about them
behind our backs in the bud! If you let people know
they are sometimes more sympathetic or understanding.
They may be less judgemental of poor behavior if they have some
eduacation and understanding.
Hope everything goes well! bonnie
ps......I have ordered from this company and they delivered quickly with in a week with standard delivery!
I have not told everyone I know about my son's recent dx. We have
several "acquaintances/friends" in our circle of friends that
we see a couple of times a year. We aren't close with them, and
they
tend to be gossips, so we have not told them. They aren't really
a
part of our regular life, so I don't see the point of telling
them. I have however told those people who are a regular part of
his life and spend the most time with him. I was overwhelmed by
everyone's (for the most part) support. There will always be
those who are ignorant and thus cruel, however I'm finding the more I
talk about it with others the better I feel they understand him and the
better I feel, too.
I go out all the time with my kids. We do something just about
everyday. I'm very active in my MOMS Club chapter, which allows
for many of our activities. My son is even in a playgroup with other
kids his age!
It's very important to have those social interactions. But the social interactions should be pleasant experiences!
Good luck making your decision. Only you know what is best for you and your son!
Christie
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