ASD Rant! Dealing with family, friends, and complete strangers!

[sl_underwood]

I am so fed up. It seems that everywhere I turn, someone is making negative comments about my son. I have a sister that calls him my retarded kid, a friend that thinks I should give him back since he isnt perfect and adopt a different child, and others who just want to tell me how to raise him! Of course, none of these people have a child with disabilities. Most think autism is nothing that a good spanking wont cure. Since his diagnosis, the playdates have ceased, two families we know, plan around his schedule and avoid him completely. One told her son she couldnt play with Cole anymore. What does she think, his autism will rub off on her kid. I just dont understand these people. Sorry for the rant, but thanks for listening.

 

[annie1995]

I am so sorry you are going through all this. It is utterly horrible what everyone is saying and doing. I work at at my sons middle school and there are a few students that are autistic, and I have to say they are so very bright its sad that some people can't see through all the stigma and see what truely hides inside these wonderful children. Many hugs and prayers for you, and keep your chin up with others.

 

[SueM in MN]

 

[minkydog]

This is so hard. I know a little of what you're talking about. My son is severely mentally disabled and autistic, so he's pretty low functioning. My own sister refers to him as being in "the retard class". She has laughed at his vocal communications as being "jibberish".None of our friends or relatives feel comfortable caring for him for more than a few minutes. I've had mothers of higher functioning kids tell me that my son was dragging down the whole class and shouldn't even be in that (special needs)class. On top of that, my DH has a severe lung disease and is slowly deteriorating; he will eventually die from it. Talk about a conversation stopper. We have very few friends who have stuck it out with us for the past almost 13 yrs.

And yet, my son is the first to smile at you and reach out for a hug. He is love personified. He once lent his swimming ring to another child who had never been able to access the pool without an adult physically holding him. Christian showed the boy how to paddle around and enjoy the water. Yes, he was hooting and flapping all the way--pure joy in motion. Christian brings happiness to everyone he meets.

Your family will probably never really understand. We have had to distance ourselves from certain family members because the things they were saying and doing were hurtful. Autism is such a difficult condition and no one can really identify with you unless they have had personal experience.

Here's another hug. I don't know about you, but I could use one

 

[Val]

Maybe this won't help you feel better, but thank goodness your son has YOU as his mother. Think what might have happened to him if he had ended up in one of those rude people's families!!!!

When I see a mom struggling with her tantrumming child, my honest to goodness thought- "Thank the Lord it isn't me today, and please help that mom through it so it won't be her tomorrow!".....I personally would like to see a "test" for parenthood that involves a meltdown in the middle of the grocery store cookie or cereal aisle during evening "rush hour".....if you can handle that without losing your cool (or at least looking like you haven't) you can handle anything!

Hugs, hugs and more hugs.....and remember those sweet (and probably sticky) little hands and arms that wrap around your neck at night and that sweet little kiss that says goodnight and I love you unconditionally---the opinion of you from THAT little person is the only real opinion that matters!

 

[bookwormde]

Just a thought.

While you can not do much about your family, as time goes by you will find that most of the people you are talking about are not worth worrying about, and that the friends that you and your child have are the best that are out there. You know they are your friends because they care not for some other superficial reason

bookwormde

 

[mazz1]

I am so fed up. It seems that everywhere I turn, someone is making negative comments about my son. I have a sister that calls him my retarded kid, a friend that thinks I should give him back since he isnt perfect and adopt a different child, and others who just want to tell me how to raise him! Of course, none of these people have a child with disabilities. Most think autism is nothing that a good spanking wont cure. Since his diagnosis, the playdates have ceased, two families we know, plan around his schedule and avoid him completely. One told her son she couldnt play with Cole anymore. What does she think, his autism will rub off on her kid. I just dont understand these people. Sorry for the rant, but thanks for listening.

sometimes you just have to rant and with so called family i think you are right to expect better

i have two ASD children the oldest Jo is now 14 and i have been in the same situation over and over so i can understand how unhappy their behaviour makes you feel and how disappointed you are that your own family (who should love unconditionally) and friends treat you and your son in this way, i also understand how isolated you must be feeling

there is very little you can do to change others opinions but you can make it clear they are hurting you, you could have strong words about appropriate language with your sister and you could write to each person explaining how upset you are by their actions

i lost all my regular friends, by the time Jo was 5 they had all vanished and i did feel a great sense of loss but i did make some wonderful new friends who are mums in the same position as me, i also came to realise just how much unconditional love that certain family members missed out on by refusing to be around my children, my Jo is a lovely teen with no malice and a pure innocence about her, the mil who favoured the other children now sees very little of them now that they are grown and it's no longer cool to hang about with granny, where as my daughter thinks granny's the bestest and always reaches out for a hug from her

with the time passing i can now see just how much the mil shot herself in the foot by discarding us, we visit once a week as a duty visit and that is all, she could have had so much more but she was the one who didn't want it and now she's in no position to ask

it is her loss and you must remember this when your family shy away from your son, sometime in the future they will regret their actions as i'm sure my mil does

you love your son and he has a wonderful immediate family that think the same way, celebrate what you have in that loving relationship and refuse to let other people upset you, you are a wonderful mum

sending hugs across the atlantic Marie xxxxx

 

[BeckyScott]

We, too, let go of some relationships.

Time will fix it. (I know it doesn't do much good to hear that right now) Either those people will come to their senses, or (more likely) you will find replacements.

Here's the thing- apparantly those people were pre-disposed to think a certain way. But you never noticed it before because you weren't in that situation. Now you see the "true colors". A friend who runs away when the going gets tough wasn't ever very much of a friend. Sometimes you just have to turn and walk the other way. It's their loss, but you can't force it. You just have to go and move on. Which is hard.

Your sister- I personally wouldn't put up with it. And I mean that in a stay-the-h*#$-away-from-me kind of way. If a stranger walked up to you and called your kid retarded, what would you do? The standard should be just as high for family, if not higher. Just because she's a relative doesn't mean she gets to speak to you however she wants. It's disrespectful, and you don't need to live with it.

 

[Gretchen]

Hey-
I Understand, ditto the prior posters. Hang in there-
G

 

[sl_underwood]

Thanks everyone. I appreciate all your support. You are right. I know my son is special. I couldnt imagine my life without Cole even on his worst day. The day he came to live with me, I knew he was meant to be mine. I know it sounds cheesy but I really believe that God had made him just for me. He is a great kid and anyone who shuns him is missing out. He has an amazing laugh and the cutest smile. He has been through so much yet has an enormous capacity to love. It is unknown at this point, where he will land on the spectrum. Some of his delays may be environmental rather than cognitive. Only time will tell. He may be lucky to have me, but I know I am lucky to have him.

 

[alizesmom]

God bless you and hang in there. Your family/friends are unlikely to change but as you continue to walk in this new world called Holland by some, you will aquire friends who have been there, friends who "get it". Many you will never get to meet in person but they will support you/advise you/laugh with you. Your son is lucky to have you and you are lucky to have him. I agree with your comment that God meant him for you. Karen

 

[SandrainNC]

I have a sister that calls him my retarded kid

I'm so sorry. I would not be talking to any of my sisters ever again (I have 3) if one of them ever said something like that about my baby. And I am pretty sure I would have beat the crap out of her when she said it. That is just mean and cruel and I don't put up with that crap at all. I don't understand adults who would purposely be cruel to a child. They are sick worthless people in my book and not worth my time.

Sandra

 

[Disneylvr]

Believe me, I feel your pain. I encounter similar situations with my family, friends, strangers...as well. I am so tired of hearing "Can't you just......" about my daughter and her behaviors.

 

[Bugsmom73]

I too understand.

 

[LuvsTinker]

How terrible for your sister to be so rude

My family does not make rude comments but they do poo poo my concerns and emotions - with constant statements of "he'll be fine"

I don't even complain or talk to them about anything upsetting me anymore with any school related behavior - it goes in one ear and out the other.

Your son is lucky to have you.

 

[Gabrielsbigtrip]

Yes - it's hard and I guess the best way to deal is to vent sometimes.

I get so tired of explaining my son's behavior. I know I don't have to but I FEEL that I have to.

I get comments like " You don't have to be up his butt all day " - one friend suggested I just let him go and play on their farm Um yeah, he would be in the pool in a second and he can't swim yet, not to mention just wandering off and getting into God knows what.

Another time we were out to dinner at the beach with a couple friends. Our one friend had his Sister and her family meet us there. There is a big pirate ship where all the kids go while parents eat. I couldn't let my son go until we could be there to watch him. He can't communicate plus he doesn't understand that smaller children may not want to be pushed past so he can go down the slide. Anyway ~ I had to explain the whole Autism thing and all of his quirks - like why he wouldn't eat anything on the menu, etc. etc. Well do you know what our friends sister says after I say he has Autism.....

"Was he diagnosed with it?"

No, I just go around labeling my child with any disability that suits my needs Who in their right mind would say their child has Autism if they weren't "diagnosed"? Geez, all the freaking appointments and therapies!

It really ticked me off. I always end up feeling inferior when I know I am the best mother and my son is the sweetest thing.

Sometimes - it just gets the best of you.

We do alot as just our tiny family of three. My son goes to school and interacts with children there but one of his biggest issues is social interaction. We understand he may not ever have "friends" in the sense that we have them and that makes us sad. But sometimes I see how mean some kids are and how bad things are in the world and I am thankful he doesn't understand. He is just so innocent.

It is refreshing that everywhere we go - my son sort of has people befriend him. It's like they are drawn to him. The problem is he could care less

Oh well, all I can say is try to educate as many people as you can while you can. On those days where you just don't feel like being the Autism Cheerleader..... Just come vent here


As for you sister - I agree with the previous poster about beating the cr*p out of her That would probably aleviate some of your frustration too.....nothing like the whole two birds with one stone thing.

 

[jacobsmom]

We decide who is around our son and our family. I'm blessed because my family is amazing--however DH isn't. (Minus one bro and sil) We chose to surround ourselves with friends who have special needs children, people who are loving-and supportive of our son, and business associates who are good to our son. Our team is fantastic so it's easier to let go of the negative comments. As for the in-laws---it's their loss. They rarely see us or our DS8.

 

[ireland_nicole]

Ditto to the PP's. We also have had to disconnect from my DH's family. He emails them, and calls them every couple of weeks, but doesn't really discuss anything but the weather... Funny thing is, sometimes the comments/attitude come from people who should know better- our first visit to DS's neuro, he said "maybe you're just too structured; You have to let him be a kid" Yeah, right. My son eats anything he can get into his mouth, runs into traffic, has a total meltdown if anything is moved an inch out of place or doesn't fit his schedule, etc., etc. floods the house any time he gets near a sink-but you're so right, I must just be parenting him wrong - Of course, then he met DD as well and admitted that there was probably a lot more than that.

Sometimes I feel that ASD and ADHD are the dx's that I can actually talk about. DD also has RAD and Bipolar in addition, and those are a lot tougher for me to mention. Nobody wants to let their kids hang out w/ the "crazy" kid. It breaks my heart every single day...(o.k., I'll stop ranting now and go get some tissues...)
- at least you know that you're not alone, and when you make a friend out of one of us, we tend to stick.

Nicole