About Me

I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.

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Saturday, September 02, 2006

Just Take A Deep Breath.....

After a day of getting way too involved in an Autism Forum, I am going to bring it to my blog. My place where I can say what I wish, without having to worry about "hurting anybodies feelings".... Here it goes....
When a well-meaning friend of mine calls me and tells me that she has met a woman in line at the grocery store, or the bank, or anywhere else that has a newly-diagnosed autistic child and would I mind talking to them. This happens often and with more than one well-meaning friend. I always tell them yes, I will talk with them, but they will not like what I have to say.
What I have to say is:
1. Sit back and just take a deep breath
2. Everything you have imagined about your child has just taken another course.
3. It is not a bad thing that your child is autistic, just not what you had expected.
4. It is okay to cry about it. Then get over it and carry on. This child will bring you so much pleasure, you cannot even imagine.
5. Do not, and I repeat, do not compare your child with others. Do not compare milestones, they vary so much anyway.
6. Do not accept pity from other well-meaning people. Especially do not accept pity from good friends and relatives. That just makes this a great big pity-party. Your child does not need this and neither do you.
7. Please look at all sides of the picture. Do not jump into treatments and therapies without looking at all the positives and negatives. Just because a doctor says to do it, you are still the parent.
8. If you cannot afford it, don't make yourself broke to do it.
9. Do not stress the small stuff. If your child is having a bad day, don't take it as defeat, take it as a bad day. We all have them.
10. Do not ever let someone make you think you are not a good parent, because you do not agree with what they want you to do with your autistic child. This is your child and you have to do what is best for you and your family.

We have lost many friends who did not want to stick around for the ride. We have lost many family members who found it to difficult to cope with. My husband and myself have formed a union that is an amazing thing. We are committed to these children and to each other. We are going to make sure nothing holds them back from being who they are and who they want to be.
We do all activities according to what mood what children are in. Some can handle birthday parties, some cannot. We take turns taking them to events and staying home with whomever wants to. This is not an inconvenience, just an adjustment.
Raising one child with autism is hard enough. Raising five with autism does not seem any harder to me. Remember, we had one at one time and we know how hard that can be. She is the child who taught us patience, courage, dignity and how to respect who she is. She is the child who taught us it is okay not to change the others. She is the child who made us better parent's than we would ever have been without her. She is the child who is now going to be the adult who makes everyone better.
Now, I will take my own advice.
I will sit back and take a breath....maybe with a glass of Cabernet Sauvignon.....


Soapbox mom said...

Hey there-
Such a busy day on that parents' forum. Moderator finally locked the thread, which should have been done much earlier in the day.
You give some great advice to moms and dads. My only regret is that you were too far away for me to toast your glass of Cabernet... I had to settle for a friend across town.

Mom26children said...

I am afraid the Moms and Dads read my tone wrong. As I think they read yours wrong also. I don't write angry when I am writing. It seems they are reading it like I am pointing my finger while I am talking.
I am just saying there are other options, that is all.
I just watched a trailer for a new film. The trailer made me sad. The comments the parent's make. Makes autism seem desperate and hopeless.
The link is www.beautifulson.com.
Please let me know what you think.

Not HER Again said...

Bluh. (There's that word again. It's my new word.) I have quit the forums...as you saw in my blog. :) No mas para mi. I'm not learning anything there except that rather than rallying together, parents of exceptional children seem to claw at one another's throats. It's such crap. I tend to overreact to the passive-aggressive comments the most. "Well, *I* love my children..." No sh*t, really? Maybe I should try that some time, DUMBASS. Anyway...it's stuff like that, that makes me say, Okay. There is something almost competetive here...and most decidedly creepy. Anyway...just wanted to drop by your blog to return the favor of your dropping by mine. Thank you for the sweet comments, and this particular post on your blog gave me a lot of food for thought.

Soapbox mom said...

Hi Jeanette-
I went to the movie's Web site, and was able to view most of the site, but could not get the trailer to load.
At any rate, once I saw some of the links, I knew what was what.
I hope that you are enjoying the three day weekend before it is back to school for the kids. We are baking cupcakes for daughter #2's birthday. We had a nice dinner and massive cake the other night with family, but she wants to have a couple friends over this afternoon. Any excuse for cupcakes is a good excuse!
I'm trying to figure out how to exchange email addresses with you without "the others" getting hold of them. oh hey--could you join the autism-pdd board? Private messaging is an option there, I cannot reveal my username, but I will look for yours. Here is a link to that forum.

for Not-her-again,
I truly hope that you read my response to your comment on my blog. I also deleted a previous comment I had left on yours, though it was really not a nasty one. I really do wish all parents the best, but it was too much to bear when I had many pro-biomed parents screaming at me that I was a child abuser for NOT chelating my son. It goes both ways.

Anne said...

I had to give up on that forum, mainly because of the way people were twisting the concept of acceptance in order to reject it.

No, not really. Mainly because of how they were treating the autistic people there, making fun of them with snide remarks.

There was a thread on the forum about the parents' sadness that their kids are excluded from birthday parties, but at the same time, the parents on this forum are doing the same thing!

I had to get out of there to preserve my resolution not to be unremittingly negative toward people who are struggling with a new and unfamiliar situation.

S.L. said...

I love your advice. If I may, I'd love to print it (giving credit to you, of course!) & keep it in all my files. It's great, sound, & organized advice to parents. I no doubt I will meet more on this journey who can use that type of advice.

Mom26children said...

I would be honored if you used it. I am sure we will all meet someone who needs advice. I just wish there was someone around 13 years ago to help us.
It took a while for me to get the lightbulb moment, thank God I got it.