No one gets it | Autism PDD

I am new to all of this, but I have the same problems.

My Mom can't or refuses to understand. And forget finding someone to watch my son.

I took him to my sisters inlaws to swim. They convinced me that he would fine in the pool with the others that I could sit on the patio and relax. SURE! Next thing I see all the others out of the pool and my son alone. They just don't get it!

It has taken a few years and my parents watch Ben go through alot of growth through the variety of threapies, for them and the rest of the family to begin to get it. One of my bro-in-laws, who is not the nurturing-but-loves types, is still a bit clueless. I leave hime to my parents. I don't have the energy for these discussions either. I need to leave my mental and spiritual reserves for Ben and I. If i plan things well and pray hard, i can leave Benjamin overnight at my folks. Unfornately, Vacaaaation Bible School came the followiing week and our routine is totally gone and VBS is not fun for him. I teaching one of the classes, so the little darling jusst tries to hang in there the best he can. Benjamin is really smart, so he tries to use his intellect to help him out. Fortunately, our church friends are so supportive and loving. They extend so much grace to us. I am so thankful. JanetI think one of the toughest parts about autism is that our kids look so normal. When a child has Down's Syndrome, you can tell, and people adjust their expectations (sometimes wrongly) due to the fact that they can LOOK at the child and tell. With our kids, at first glance, they look just like any other child (Except way cuter)

and people just assume it must be OUR faults that something is wrong with our kids.

I really think that has a lot to do with it.

Mom's not getting it? I have the same problem. My Mom used to be the one to say I think Takoda's a little Autistic. I would get angry with her because it was an ear problem or some other excuse. As he got older and his hearing was fine (after tubes) but he still showed obvious delays I did find out it was Autism.

Now Mom who was on the right track before me and could be saying, "I TOLD YOU SO," now she says he is just oppisitional like his brother.

When she helped me with takoda at our county fair she got to see first hand sensory overload and meltdown. Takoda clawed and screamed and went into meltdown because she had to take him away from her friends game stand. The lady was nice to takoda and gave him a prize for playing but takoda wanted to keep playing and started throwing rocks up in her stand.

My mom is one of the few people who will watch takoda or even takoda and jared. So I give her credit for that but I just don't understand how someone could see him and know about autistism and decide (after reading up) that's not it. She has some of her own issues but still SHE SAW IT FIRST!

Nelle

I think in some ways we all feel the same about taking our kids places and I think we all keep from taking our kids alot of places.I know how you feel I haven't been out of my house alone (except for when daddy stays with him which isn't very often )and even then I have one of the other kids with me!! But we have not gone out of this house alone together in 2 yrs! I always have a hard time even with family members because I am afraid they will not understand him and mistake how he is for bad behavior and try to punish him and then all h*ll will brake loose with him. So we just keep him with us to avoid any of that happening. It can really wear on you though. I understand about the mother thinking if you treat him like a typical child he will become one!! But just remember it's your child and you know what is best for him/her. Hope things get easier for you and your child .
I think husbands don't "get it" because they only live one part of it. Sure they know the lingo, the routines, etc... but they don't live it like we do. We are the ones that are hands on 24/7.

My son's Dad is leaving us soon to live/marry another women with 3 "perfect" children. That bites! He expects me to let him have visitation every other weekend. How do I do that?

Most people around me understand that Jodie is different. My mom is the only one who refuses to believe that she has any issues at all. My mother-in-law accepts the fact, but doesn't like being around her.

My big problem though is what people expect from us. It's so hard to explain to people 'why' you don't do the same things as they do and why I can't just let Jo do things other kids do.

For example, I was very ill recently. My brother and his family were camping near the river and offered to take my kids for one night. I was so thankful because that same day I ended up at the emergency room. But my so so sweet sister-in-law had a terrible time dealing with Jo. She tries harder than anyone and still ended up frustrated and snaping at her. I do not blame her at all.

But this kind of situation comes up all the time. Theres a gazzilion reasons why I don't want Jo to go places for too long with other people. But most people feel I'm an overbearing paranoid mom.

My point is....If someone wants to let Jo tag along or stay the night, I need them to know that she will be your center focus. You can't go about your business when you have her. She's alot of work. And if you just expect her to act and play like a nt kid, you're expecting way too much.

Sorry to ramble. I just love having a place to get things off my chest. Oh my gosh! I go through through that exact same thing all the time. And just went through it again with my mother this summer. I agree with the child having to be the "focus". My mother and my mother in law think that if we just treat him like a typical child that he will be one. It's so absurd and it makes me so angry and it puts my son in dangerous position. And some friends with typical children don't understand why I don't take my son certain places, etc. YOU are SOOOO not alone on this one. I'm going through the exact same thing. My sons diagnoses came in 5 years ago, he is 9 now. If my family and friends don't get it by now, I don't think they ever will.
Sorry you have been ill! A couple months ago, I too had an urgent (dental infection) that made me very ill, very quickly.

I agree with you, our children (most of them anyway) can not be treated as an NT child, because they have special needs. While that seems fairly simple, it can be very difficult for our families, friends, teachers, etc, etc. Even some health care providors just dont seem to get it sometimes (LOL).

I have learned to pretty well tune out my Mom and sister, their hearts are in the right place and he is their grandson / nephew- they do love him. SO if they MUST say, oh he is fine, just a little behind and he is catching up (he is 4 and nonverbal, not potty trained, serious eating and other sensory issues)- I just let them think what they will, I do not correct nor confront them. When I find an interesting article or related info, I will forward it to their email. It has been a semi truce for us. I dont have the time nor the energy to argue with them anymore.

Anyway, I understand exactly and hope you are well!
Jean
I agree our kids are much cuter.
No, seriously I am so new at this that I just don't even know how to tell someone.

I think most people think that we have kids that just don't behave. We are bad parents and lost control of them.

I love Gregory more now then ever (if that is possible).

This site is a godsend to me. My son's Dad thinks we are just a bunch of bleeding hearts trying to make our kids "handicap".

Thanks to each of you for taking the time to do this.

You guys should check out the poem on one of the other threads. It is so on target. My son liked it and said tht it sounded like him. I made a couple of copies, but plan to make more. It is so beautiful in describing the dilemma that our 'babies' face.

Janet
Hi, I'm new. But I just wanted to say that you think Mom's not getting it is bad? Try husband's not getting it. My husband is generally good about understanding and he even gets angry with his family when they say things or expect things of Matthew that he can't do. But, he also has a tendency to want to do things and when I tell him that we can't because of Matthew he always gets argumentative about how he believes that we can or that we should try. We all know that a big factor of autism is the need for a schedule and to stay on that schedule. Well whenever my husband wants to go somewhere that will take us out of town and get us back late I explain to him that it will mess Matthews sleeping up for DAYS and this of course starts an argument about how I should just try. As if I'm doing all this to be a pain and not because Matthew has a problem. I mean afterall he isn't the one who has to stay up with Matthew when he can't sleep or when he gets up 4 and 5 hours early.
Unfortunately, the only place that will take good care of my son (besides us) is respite care through our local community living. They are AWESOME and so good with him. My mother had my son for one hour tonght and he through a 1/2 screaming fit and bit his arm until it bruised
Janice

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