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Okay I just sent this to my cousin. I hope this is appropriate - Added to my son is autistic wrote on facebook

Anonymous
Posted by Anonymous
  • 69 Replies

So my autistic son's birthday is coming up soon. And I am very proud of him. He has made so many strides this year. He continues to get better, and better. He works hard on his schoolwork doing his very best to learn to read.

So on my facebook account, I wrote about how proud I am of being his mommy, and how hard he has worked, etc, etc.I told them all about his upcoming birthday party at Chuck E Cheese. We are doing the really huge party. Mostly because he has earned it, by working so hard all year round. He does summer schooling with mom at home as well as doing his virtual schooling all year round. He does Hooked on Phonics to learn to read.

He has worked on his social skills to. As he has a hard time. He is sweet and kind and loving and used to have a small temper, but no longer does. He has even learned, through us joking with him with many repetitions of telling him, "It is just a joke" and many explanations of what a joke is, and he will now not laugh, but will say "I know you are just joking". He has compassion, because I have taught him over and over and over the same thing, "When you say something mean it is the same as hitting, only it hurts inside here" and I point at my heart. After a while he began to say it back when asked, "When we say something mean it is the same as hitting, only it hurts inside, in your heart. And that means it makes someone sad, angry, and upset."

Anyway, point is that in almost 8 short years, we have worked with him to the point he is showing awesome improvement. He also sees a therapist.

My grandma's sister, we will call her Dorothy, has a daughter Janet. Janet is I guess, my cousin? 2nd cousin? I dunno! All I know she was my always my favorite. She called me her "niece" and always would say when I was kid "You are my FAVORITE niece! She used to bring me cool things, like denim jackets, or she would come over and do my hair really cool. Or she would buy me new cool shoes. Etc. She was awesome when I was a kid.

When I got older, we lost touch. And when I met my husband, we got married, had our first child, and moved across the country. So only recentally have I gotten back in touch. Well, come to find out she has a son with autism. And he is NOT high functioning. The poor kiddo is an adult now. He is semi-violent when things don't go his way. He doesn't talk anymore. He used to talk when he was younger and has gotten worse with time.

So I wrote this post, saying things like I have high hopes for my son's future, he has amazing empathy, his therapist has told us she is amazed with how much progress my son has made, told me most kids need years of therapy to learn empathy and our son already shows it, and told me we set the bar for every other parent she sees there. She even asked if she could, without using my name, give other parents suggestions I have used with my own son. It was a hell of a compliment and made me tear up.

So she gets on my post. And writes a reply. That basically says, ALL KIDS ON THE SPECTRUM ARE DIFFERENT! My son has EMPATHY TOO! I had high hopes for my son's future, but he stopped talking all of a sudden. My son cannot dress himself any longer, or even take a bath alone. Then she says God Bless your family!

WHOAH! WTF! Are we trying to freak me out or something? Trying to scare me that MY SON will turn into hers in 20 years? Um.... WTF?!

I wanted to say something... That would just make her cry like a baby. But on the same hand, I can understand, somewhat, her pain. I have had that fear, of what would happen IF.... But I refuse to let it rule me. So I simply said, Hey, hope all your family is doing well, love you send my love to the family.

But that was NOT okay. No shit it can happen, but I refuse to think it will. And what she said I think was just wrong. What do you think?

 

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So I just sent her this in a PM. Only her and I can see it. I thought it would be better that way.

 

Hey, how is everything? I wanted to tell you first off, I am and always will be grateful for you. As a child you always made me feel so special. Remember? You used to call me your favorite niece and would come and I still remember how you do my hair up so pretty and the awesome denim jacket you got me when I was, what, 12? *Hugs* I wanted to seriously thank you for that. It always made me feel so loved and special. I also wanted to let you know, and I am sure you know, that you are NOT alone when it comes to your child. I know sometimes it can feel that way, I have felt that way sometimes in the past. It's hard to have a child on the spectrum, and no matter how OLD your child gets, they are always your baby. I bet your son has some wonderful things about him that make you love him all the more. And one thing I have seen with my own child, is that these types of kids make you cherish every little moment that comes around. It's like last summer, when we met dad and mom in California for a vacation. For years, we had told our child over and over, that if he wanted to get to know another child, he had to say "Hi I'm ______ what's your name?" And he never said it. Well, we were in LEGOLAND, and he turned to the child next to him, and for the first time in his life, he said, "Hi I'm _______ what's your name?" And I just about fell over.

 I grabbed dad, and quietly told him, grabbed hubby, and told him, grabbed mom's arm and told her. It was the FIRST TIME! And I was so proud. I think you are a terrific mom and you work hard with your child too. I am sorry he has somewhat regressed. All we can do I guess, is cling to those who understand what we are going through, and try to make those who do not "get it" come to a point of understanding. That our children are different, but not bad. That our children have struggles but also make us recognize even the smallest accomplishments and because of them we cherish every little thing. It has truly changed the way I see my other children, and made me cherish every little accomplishment with them all not just with the one with autism. Anyway, I just wanted to say I love you and if you ever need to talk, I am here for you. And to thank you for everything you ever did for me in the past. You have always been very kind and loving towards me, and I am very sorry we sort of lost touch for so long. *Hugs* Keep in touch okay? I want to hold onto and be grateful for every family member I have.

Posted by Anonymous on Jul. 31, 2013 at 12:41 PM
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Replies (1-10):
SyllabaryBisque
by Platinum Member on Jul. 31, 2013 at 12:45 PM
5 moms liked this

Usually, I would say "what a bitch" and move on. But quite honestly, I'm sure she's just very hurt and very jealous. Sometimes you can be so consumed by the situation that you're in that you don't stop to think how you're treating other people. I know it was incredibly rude of her, but I wouldn't hold it against her. Just my opinion though. 

my.sonshine
by Gold Member on Jul. 31, 2013 at 12:47 PM
2 moms liked this
I'm sure She's happy for you and I don't see her reply insinuating anything about your son. Maybe She's just pointing out that even though she too made great strides it just simply didn't work out that way for her. Maybe she feels you're rubbing it in? When something is written rather than spoken its hard to disect sometimes. Great job btw.
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beethann
by Platinum Member on Jul. 31, 2013 at 12:48 PM
2 moms liked this

I would like to know EXACTLY what she said. Not what she basically said.

I think she was just sharing her own experiences with you.

Jabojoe
by Ruby Member on Jul. 31, 2013 at 12:50 PM
Well I have an autistic son also and he's i guess medium high functioning. He does well academically and his social skills are middle of the road but we are working on it in therapy. I also drive a school bus for an autistic school. Your cousin is right that all kids on the spectrum are different. Some are more high functioning then others, some are nonverbal, etc. It's great that your ds is doing so well and you should definitely be very proud. I just think that maybe your cousin is a little envious and perhaps she took it personally. Not saying she's right or anything but sometimes we get very emotional about our children and it hurts when we watch them struggle so much with things that other kids can do with ease. I don't think she meant to personally attack you, I think you may be reading too much into this. I think she is just frustrated if that makes sense. I wouldn't take it too personally.
mommytoeandb
by Ruby Member on Jul. 31, 2013 at 12:50 PM
2 moms liked this

I think she is just talking about her experience and you are reading way too into the post. Sounds like she is happy for you guys and sad for her son.  

Anonymous
by Anonymous 1 - Original Poster on Jul. 31, 2013 at 12:51 PM

 Word for word -

Each autistic child is unique...my son showed much empathy and would cry for others and could truly feel their pain...he still does. Now unfortunately he has greatly regressed in his teenage years. He has almost lost all ability to speak and cannot perform the everyday tasks such as dressing and bathing himself. He is still the sweet lovable boy we always loved but his challenges are much greater and now and our understanding must be greater. God bless you and your family!

Quoting beethann:

I would like to know EXACTLY what she said. Not what she basically said.

I think she was just sharing her own experiences with you.


 

Crazy-Steph
by Emerald Member on Jul. 31, 2013 at 12:53 PM
1 mom liked this

I don't see where she really said anything wrong.  I think she was just sharingher experience.

Anonymous
by Anonymous 2 on Jul. 31, 2013 at 12:54 PM

Her experience is clearly different than yours amd she too at one time had high hopes for her son.   She is expressing her pain - why? who cares.

Just do what you've been doing and don't let it get in the way of your joy.


threenorns
by on Jul. 31, 2013 at 12:54 PM

i think what she was trying to do was prepare you in case the worst happens.  i can see the reasoning.

doesn't make it less confusing or hurtful if she hasn't made the context clear.  

equally likely, she could be reacting out of pain and jealousy - not everybody has the time, the energy, the motivation, or the knowledge to work with their children as intensely as you have.

my youngest daughter is nowhere near as bad as yours - she's 6yrs old and when ppl scoff and tell me "there is NOTHING wrong with that kid!"  i don't take it as an insult - i tell them "thank you!  it's great to know my efforts are appreciated!"

but i have noticed that on days i cannot work with her (like this past week, when i'm in the middle of dealing with a hoarder situation and putting down a new hardwood floor), she does regress.  if i dont take her outside and spend at least an hour with her a day, she'll start bolting again (and we're in a totally strange city with far more traffic than in our sleepy little home town so this is a serious danger - i wouldn't even know where to start looking bec there's two fast-moving creeks and a children's interactive park all within a 5min walk and all across seriously busy streets!). 

chalisa0
by Ruby Member on Jul. 31, 2013 at 12:55 PM

I know nothing whatsoever about autism, but I will say that it sounds like you are working very very hard for your son.  If he continues onward, I would doubt that he would just crash like that.  I've heard that happens at like age 1.5 or 2 when kids first get autism diagnoses.  I think you should keep up the amazing work and the awesome attitude and I'll bet that your son just continues to grow and excel!

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