How do you make family understand?

Julieann - posted on 01/10/2010

Carolyn,

What my husband and I did was to head to the bookstore. We bought Jenny McCarthy's book, "Louder Than Words" as well as, "10 Things Every Autistic Child Wishes You Knew" by Ellen Notbohm. I read these books and then passed them onto my parents. They didn't know what to do when certain things would happen with our boy. Or they didn't know what may or may not set him off. So first I gave them the Jenny McCarthy book because it so poignantly describes her struggle to find out what was happening with her son, her love, her sorrow, her anger and determination. That helped my family to "feel" what we were experiencing or had already experienced. Then I gave them the, "10 Things..." book. This book is great because its a list and then it explains. It isn't a lengthy book and in all fairness, Jenny's book was very easy reading. I am going to post a link here that was taken from the, "10 Things.." list.

I can tell you that both books helped me to understand, Jenny's from an emotional standpoint as well as helpful notes on what kind of doctors to see or possible things that may help your son. I can tell you that from my personal standpoint, the list was invaluable to me. I kept the book close to me and referred back to it many times. This link provides an excellent summary and I would print it and put it up on the fridge. This might also be helpful to your family as opposed to reading an entire book. Just hand them the printed list and tell them to refer to it when they don't understand. Its not your son's job to behave according to what your family thinks a child should behave as. You can only do so much to make them understand, you are his best advocate. But when it really comes down to it, you may have to break ties or at the least, tell them to either back off or get their list. Its not about you controlling your son, its about letting your son be himself and then your family's job to respond appropriately. They are the adults here, he is the child. They need to reign in their comments and judgements, but know on your part-you did what you could to help them see and understand. If they cannot or refuse not to understand, that is no longer your problem. I know easier said than done, but you have to think about your son first. He may not get it now, but as he gets older, those comments and judgements are going to hurt him and he needs to know he is loved AS IS! I found that my son was so smart in ways I could never understand but tried to foster his interests, or whatever he was good at so that he could gain confidence in himself. I had to do things differently and approach change differently, all the way from trying on new shoes to riding a bike. Feel free to contact me anytime. I learned something new everyday from my son and have been so blessed by him. I wouldn't want him to be any other way than the way he is. I send my love and prayers to you and your family.

http://www.autism.net.au/Downloads/Ten%2...

Well, looks like you can's click on it but maybe you can copy and paste into your browser. Sorry. I found it at this website: www.autism.net.au

Sincerely,

Julieann

Please send me an email if you ever wish to talk ajdecker9900@yahoo.com

Sarah - posted on 01/09/2010

http://www.amazon.com/Things-Every-Child...

This book helped my friends and family. I can't seem to get my own husband to read it though. :( It is still kinda sugar coated, but it does explain quite a bit.

Val - posted on 01/09/2010

Quoting Benita:

Quoting Carolyn:

Oh yeah one of the bigest problems his family has with the whole deal is that some times I have to hold him very tight and some times i have to hold him while laying on the floor. For his safty and others when he has a "fit". So far the only thing i have told them when they ask me why i do that is.... i have to not want to so please just let me do it. I dont know how to explain that if I dont he could hurt his head again or some one else or something else.

I know there are these great vests, weight vest that can be done up tightly inorder to allow for pressure build up and release. some kids need a squeeze or a bit of weight , they get a release or something from the sensation.The vest sometimes work  well for kids and as they get older they may use themselves. They are heavy and give that pressure sensation that can be very comforting to some kids. Also weight blankets. This is sensory behaviour and u can liken it to some people clenching their teeth when they get angry in order not to swear or hit someone, or popping your knuckles when u concentrate( some people chew their pencils). Also if he likes to squeeze bak give him a squeezy ball or toy, allow him to get that sensation in an acceptable/directable way. u should get an OP to work on this with your son, desensitation, I think that is what it is referred to, can be worked on and sometimes-like with my boy- it can work. everything takes time...  Keep pushing, trying, persistance works.

i think she meant she has to restrain him physically from doing harm-

i've had to do this with kids in my classes- one who would bite himself until he bled, (or other kids) another would pull her hair out in chunks... my own son got to slaping and biting at himself as well, and many times the only way to stop them is to sit with them in a restraining hold.

i thought it was a bit odd when i had to take the training for how-to , but later was happy i did.

i know the vests youre talking about too-and its a sensory integration tool-  they CAN be used for calming, but the self-hurtful actions have to be stopped first.



i also meant to put this in my earlier reply- one abve reminded me- many people see autism or developmental disorders in general as diseases, saying your child has autistic qualities is like telling someone you have cancer. *GASP* oh no, how long do you have?

I call them autistic qualities, because saying simply a child IS or HAS autistism tends to label that child , as was said "retarded. " , or mentally ill, and theres no hope for a future. it also gives the child issues with their own self images.



as for talking to family- explain to them autism isn't a disease, your child isn't going to "give it to them" or die from it. he simply learns and experiences the world differently from typical children, in a unique way. therefore he REACTS to the world also in a unique way. he's not stupid, he IS able to learn, he's not simple, he's able to communicate, you just have to think outside of the typical child to see his world. there's nothing "wrong" with him- he's simply unique. if they look hard enough and honestly try, they'll find that child can teach them a thing or two about the world.



many adults just don't have the capacity to understand what you ask when you tell them to forget what they know about children when they look at yours. but if they can- tell them to go totally BLANK mentally, and look at the child doing an activity. get on the childs level and look for the 'simple' reasoning of what the activity is.

Whitney - posted on 01/08/2010

hi carolyn my son is almost 3 and it's looking like he is autistic! we have had several tests ran and we go to meet w the dr. in feb. for a diagnosis if there is one. my son plays to himself and has several symptoms of autism but the most obvious is lack of speech although he has been in therepy for a yr. we dont know "how bad it is yet" but about the FAMILY i totaly understand it seems as if we are talking to the wall most of the time and yes people want to assume he is "slow" or rearded. I work at the christian school he goes to and can you believe that one of my coworkers looked at me and said" i know he's not retarded" i didnt know whether to jump over the counter and beat the crap out of her or just stand there. so thats what i did . i stood there and it really sat in on how much people do dot understand . or in other words are ignorant! This is what i would do. HAVE A FAMILY MEETING REMIND EVERYONE THAT THEY ARE THERE FOR YOUR SON AND TO BE EDUCATED ON HIS CONDITION AND IF THEY WANT TO BE A PART OF HIS LIFE THEN THEY NEED TO GET ON BOARD! GET ON YOU TUBE AND SHOW THEM A COUPLE OF CLIPS OF AUTISM (which if u havent seen please do, it will make u and everyone else appreciate your child even more ) TELL THEM AGAIN HOW HE IS JUST LIKE YOU AND I , HE JUST ISNT SOCIAL AND THAT THEY MUST GET ON HIS LEVEL TO COMMUNICATE. THAT IF HE IS PLAYING ALONE, GO BESIDE HIM AND PLAY TOO OR GET IN THE FLOOR WITH HIM AND HOW MUCH OF AN EFFORT THEY WILL NEED TO MAKE , BUT THAT IT IS ALL FOR YOUR SON AND ALL IT COULD DO WOULD BE TO HELP.START A SIGN UP SHEET ON DIFFERENT FAMILY MEMBERS THAT WILL GO WITH U AND UR SON TO MCDONALDS OR A PLAYPLACE A COUPLE TIMES A WEEK. TELL THEM THIS IS A COMMITMENT AND THET ARE EITHER ON BOARD OR NOT! BE STRONG YOU ARE HIS BEST FRIEND ND YOU HAVE TO FIGHT FOR HIM. SADLY WHAT I AM EXPERIENCING IS THAT the family members that i thought would be more helpful and just there for us in general, they arent. Hang in there and talk to you soon . keep fighting and show them all that you are a warrior and you are unstopable thanks whitney d

Benita - posted on 01/08/2010

Quoting Carolyn:

Oh yeah one of the bigest problems his family has with the whole deal is that some times I have to hold him very tight and some times i have to hold him while laying on the floor. For his safty and others when he has a "fit". So far the only thing i have told them when they ask me why i do that is.... i have to not want to so please just let me do it. I dont know how to explain that if I dont he could hurt his head again or some one else or something else.

I know there are these great vests, weight vest that can be done up tightly inorder to allow for pressure build up and release. some kids need a squeeze or a bit of weight , they get a release or something from the sensation.The vest sometimes work  well for kids and as they get older they may use themselves. They are heavy and give that pressure sensation that can be very comforting to some kids. Also weight blankets. This is sensory behaviour and u can liken it to some people clenching their teeth when they get angry in order not to swear or hit someone, or popping your knuckles when u concentrate( some people chew their pencils). Also if he likes to squeeze bak give him a squeezy ball or toy, allow him to get that sensation in an acceptable/directable way. u should get an OP to work on this with your son, desensitation, I think that is what it is referred to, can be worked on and sometimes-like with my boy- it can work. everything takes time...  Keep pushing, trying, persistance works.

Val - posted on 01/07/2010

my child hasn't officially been 'diagnosed' - i've been fighting the family for years- but being a development consultant, i recognize the spectral tendencies my son displays.
I do not see him as a child with a disorder, I do not see him as a child with problems. I see him as a unique person, who at a young age needed a bit more guidance and security than his siblings did.
The family fights me to this day. My husband calls the whole issue "mumbo jumbo labeling" just to get kids on meds. I don't agree with him besides the meds part- too many are mis-medicated- BUT we have agreed to disagree because even he has seen the changes I've been able to make with my son using behavior management.
As for the rest of the family, well, they see it, but deny it. some ask me why on earth he's doing a particular thing over and over (such as washing his hands- refusing to go into a bright or loud room) and i simply tell them, thats his thing. if you don't want to deal with it, don't have him over. but this is how we handle it, and its the only way that has worked so far. if you are not willing to do it this way don't have him over. if you think you have a better idea, lets talk.
I've had some tell me at ffirst, when he was a baby that nooo nothing wrong with him at ALL- YOURE crazy! and now that hes older and obviously reacting out of "age ", or obsessively they tell me i should get him help because he shouldn't be doing that.

its hard to have to turn family away in defense of your child, but if the family doesn't understand it, that child needs you more.

I'm getting ready to go thru this entire process AGAIN, because my son has now at almost 6, started displaying more extreme OCD behaviors, and my trick bag won't touch him anymore. I've asked for help from the dr, and i'm already back to trying to convince my husband its for US as much as our son. the rest of the family is next... again.
be strong and stand by your kids.

Lecia - posted on 01/07/2010

you know what? i didnt. I didnt try to get them to understand. I went through all of this, even had one of my youngest sons family on his dads side sit him at the table and tell him he had to eat all of the food on his plate before he could get up. (He doesn't eat anything but crunchy things!) I realized that his side of the family really didnt recognize that there were special needs there, and I knew in my heart what was going on, if they were not willing to try and learn about it, then I wasnt going to kill myself over it. With two boys with autism, I need support, not to be criticized. My hands are full enough as it is. Good luck!

Emily - posted on 01/04/2010

Sometimes I think there are some people who will NEVER understand. If like me you have family that..."just dont get it" , make sure you have a good network of friends that do! I have given up on my family trying to explain to them what a normal day is like for me. They have the choice to get educated on the subject and if they chose not to, then so be it. My 2 other children know that their brother is different to them and we educate them everyday. I dont have time to educate everyone. Those who want to find out more about it ...will!! Im lucky that I have 2 really good girlfriends that are always there for me to vent or take my son for a few hours so I can spend time with the other children.

Beth - posted on 01/04/2010

Quoting Rachel:

i did a google search and came up with :

Autism Education & Support Service - (Map It)
105 Crossings Industrial Ct
O Fallon, MO
(636) 978-4951
http://aessconsult.com/

Looks like they offer a lot of support services -- including parent training -- which i'm looking into myself.... They may have more info as far as social groups too. Call them today and let me know how it goes.

And please let me know what you find out about this. How weird, O'Fallon isn't far from where I grew up. Beth

Beth - posted on 01/04/2010

Quoting Rachel:

this letter is for grandparents and it's about aspergers syndrome but you can edit it as you see fit :

http://www.udel.edu/bkirby/asperger/gran...


it was very very helpful to explain things to my mother.

good luck.

Rachel, it's so great to see you here. I'm sure you're already seeing what a great group of women we have beside us struggling to keep our heads above water. And you're already helping others! I, too, think OASIS is a great resource. Unfortunately, never in a million years will l get my in-laws to understand, let alone read any of this. There's nothing wrong, we're terrible parents, etc. I had an awful meltdown at Christmas and I'm sure they all think I'm a terrible wife, mother and a terrible person, but after so many years with little or no support or empathy--isn't it ironic?--I really couldn't take it anymore and I just don't care what they think. Sorry, but I really needed to vent.

Katherine - posted on 01/04/2010

Quoting Carolyn:

Thank you all we will be trying the ideas. Does anyone also know how to find a local sapport group. We need to find other parents like us in the area so we can learn more. And maybe we can take him out more. I hear about specail events that are friendly for children like him.

Try www.meetup.com, google it too :)  You definitely need to breathe!!!

Nina - posted on 01/04/2010

Carolyn I love you! And you love him too! Some people just don't get it!!! I don't know which side of the family isn't helping and you can try and send them brouchers and stuff but are they going to read it? Just tell them, sit down and explain to them this isn't something to get attention he isn't mentally handicap, he just needs a little more help and let them know that he needs a structured lifestyle and when they are present in his life they need to stick with what you say. Sorry I am not an expert on this like the other people on the posts, or have someone (other than him) to have this condition but it is serious. And they need to realize the seriousness of it, and I am sorry if they cannot grasp that then take them out of your life for a little bit. You have a family to run, 3 boys, one autistic, one newborn, and a total heartbreaker who is going to need an extra hug bc he is in the middle. I love you and I love them, wish I was there to help you.

Rachel - posted on 01/04/2010

i did a google search and came up with :

Autism Education & Support Service - (Map It)
105 Crossings Industrial Ct
O Fallon, MO
(636) 978-4951
http://aessconsult.com/

Looks like they offer a lot of support services -- including parent training -- which i'm looking into myself.... They may have more info as far as social groups too. Call them today and let me know how it goes.

Carolyn - posted on 01/03/2010

Oh yeah one of the bigest problems his family has with the whole deal is that some times I have to hold him very tight and some times i have to hold him while laying on the floor. For his safty and others when he has a "fit". So far the only thing i have told them when they ask me why i do that is.... i have to not want to so please just let me do it. I dont know how to explain that if I dont he could hurt his head again or some one else or something else.

Carolyn - posted on 01/03/2010

Thank you all we will be trying the ideas. Does anyone also know how to find a local sapport group. We need to find other parents like us in the area so we can learn more. And maybe we can take him out more. I hear about specail events that are friendly for children like him.

Sheila - posted on 01/03/2010

Hi Carolyn,

It is so hard when the people you need support from don't get it.

I had had a number of conversations where I feel like I am being grilled, but I know that people are just trying to get a handle on everything. What is harder still is they have no idea of the struggles we have. So often I am asked if we are going to (fill in the blank).

Well, no we are not because
A) it is too noisy
b) too many people
c) the lights are too bright
d) they play music and if a "slow" song comes on we go into complete meltdown
e) my son can't do that because he just can't and I don't know why but it's related to his autism (and NO he can't just GET USED TO IT! I have to break it down into a million steps, and maybe six months from now he will be able to do it) We have been going to the same indoor play centre since he was a toddler and he climbed the apparatus for the first time this past week! We go at 11, when it starts to quiet down for lunch. Staff there were so excellent and would turn down the music.

They just don't get it and I often think they are afraid because what if they are looking after him and he goes into a meltdown (besides my mom, my son has only been looked after by other family members maybe three times).

I wear my autism awareness button WHEREVER i go! I have two tags on my car (because my husband won't put one on his) and I can be blunt (but I have a "pleasant" demeanour, so I can get away with it LOL!) When questioned about do your kids do this or that, I say well, our reality is quite different from what you're describing, so that is an issue we don't deal with. (I would LOVE to have tattling be the biggest problem of the day....instead, if I am in the basement, I will hear my seven year old calling for help because her brother is crying...she can spot a meltdown beginning from a mile away...when she was five and we were driving someplace, I would hear her encouraging her brother to take deep breaths, wiggle your fingers...if a five year old can get it, why can't others??)

I have also had the question, but he's going to be all right, right? Don't ask me that. don't ask me to reassure you about the well-being of my son. I enjoy him being five and soon I will enjoy six. I prepare for the coming years, but I won't predict them.

Get your support where you can get it.

Inform those that look for understanding.

Hug those that understand.

And ignore those that will judge.

Good luck,

Sheila

Rachel - posted on 01/03/2010

this letter is for grandparents and it's about aspergers syndrome but you can edit it as you see fit :

http://www.udel.edu/bkirby/asperger/gran...


it was very very helpful to explain things to my mother.

good luck.

Cathy - posted on 01/03/2010

Quoting Carolyn:

How do you make family understand?

I have a 4 yr old and we just got the final diagnouses that he is autistic on dec 2. Not only are we trying to cope with it but the family isnt helping. How do I get the rest of they family to understand. Like the grandmas and aunts? My family sometimes treats him like he is mentaly retarded. But hes not. Or my fav. coment is dont you have control over your son. Please help I dont know how much more of this I can take I keep telling them hes autistic and its not working.

if your family members refuse to accept the diagnosis then give yourself a break and do not have anything to do with them until they understand and want to be supportive

Cathy - posted on 01/03/2010

If your family members refuse to accept that he is Autistic then give yourself a break and do not deal with them

Wendy - posted on 01/03/2010

Hi Carolyn, When my son was diagnosed at the same age, my inlaws wouldn't believe anything. We gave them brochures and books to read. Its a new thing for them as it wasn't around as much when we were kids. I found a little distance and time helped until they accepted the fact that my son was different to the rest of the grandkids. This gave them time to read the information and find out a little more. Now I have the problem that they favour him more over my girls.

Cindy - posted on 01/03/2010

Give them some information printed from the computer or brochures regarding Autism. It is important that they understand if they are close by and will be seeing him often-- or watching him once in awhile. Take your family to some events that have other autistic children- - special days at the zoo for instance or a information meeting at the local Autism board. Be specific and direct in your answers.... and by all means make sure that this is permanent- it won't "get better" or go away--. I sometimes feel as though my distant family feels like they are waiting to get to know my daughter when " she grows out of this." In the mean time they are missing out on a very precious child.

Information and clarity. Good luck!

Renee - posted on 01/03/2010

Yes get some simple straight-forward information and have them read it. My family is still that way after four and a half years. Also I've noticed that many people in my family who are over a certain age don't want to talk about it, like talking about it is a bad thing. They don't know how to relate to my son so they either do a horrible job or ignore him. Thankfully we don't see them very often.

Jan - posted on 01/02/2010

what we did is get the grand parents to go to the early learning centres with us. that was a real eye opener for them. Jan

Marianne - posted on 01/02/2010

There are some great brochures and books out there aimed at teaching family members al about Autism. I have a couple for use within the school envornment. Im not sure where you live, b ut there is a shop called "Book In Hand.com.au" that stocks hundreds of books, dvds and learning literature and they post worldwide.