Autism and the FIGHT

Temple Grandin and Angela D and Me 

This pic was taken 4 years ago...just before I was diagnosed with Kidney Disease. You can see that I was carrying an extra 25 pounds of water...yuck! I didn't know I was sick until I was diagnosed and put on meds. Lost a better part of the water retention and my blood pressure normalized. I feel pretty good now and don't look so puffy and tired.

The thing about Autism is...the kids look normal! In fact a lot of them are exceptionally attractive. To the outside world they are beautiful kids that have really bad behaviour. They don't look sick or challenged or cross eyed or cleft palates. They obviously don't have Downs Syndrome or missing limbs or cerebral palsy. For the most part you cannot look at a child with Autism and know right away that the child has developmental delays or challenges of any sort. There is no magic pill to fix them...no diagnostic test to definitively pin point the cause or the severity. As a parent you are faced with a complex neurological delay that NO ONE can tell you HOW to FIX or WHY! And the whole world looks at your gorgeous child being an asshole and thinks you suck as a parent. Fun times!

Just met a Mom with a child recently diagnosed and the memory of that time came flooding back to me. The grief and sadness and YES denial! It's not a slap in the face it's cutting you to the core to hear your child is challenged. And they ALWAYS tell you to be prepared that they will NEVER speak, NEVER be toilet trained and NEVER seek affection. You sit there looking at these people swirling in a tornado of grief and confusion and doubt. Completely overwhelmed with the task at hand and have no where to turn to but a couple of pamphlets and a binder with numbers of professionals that ALL have a 6 month waiting lists or more. You don't understand the language they use or the terms at all. Sensory seeking? HFA? MR? DIR? PECS? RDI? PDD-NOS? Etc etc etc......

Your spouse shuts down...you shut down...it is EXACTLY like losing a loved one...You feel grief just like that...Men are usually in denial longer...and for years really. Mom has to step up to the plate and get help and learn all of it without the support of hubby...who thinks the diagnosis is BS and the child is just speech delayed...LOL!  9/10 that is the case. Have met hundreds in person and hundreds more online and we all have similar experiences. Hubby can't take it. The exceptions to this rule are few and the men that run with it right away are amazing in their support and knowledge.

Which brings me to the point of this post. Having spoken with many a parent this past week about what made the most difference in the success for your child we all agreed...US! That's right! The parents are the key to getting through. We DON'T give up! We fight like hell for the best supports in therapy and school. We fight like hell at home and DO NOT TREAT THEM LIKE BABIES! Treat them at their age level and expect these kids to behave as their age group. NO EXCUSES! Temple Grandin made a 90 minute presentation all those years ago. You know what she said? Why are parents NOT expecting their kids to have manners? She was raised in the 1950's...she was expected to have manners and behave even if she did not speak. She sat in Church and behaved. She went to school and behaved. Our kids have to behave as well. They are expected to conform to social standards in public. Picking your nose at the check out is not allowed..lol....No one is perfect and we have had our fair share of meltdowns from hell in public but we didn't give up! Let the little buggers break down and freak....the next time the time will be less and so on and so on....Remember having Ty in the sling, Sammy in the cart and Joe having a fit on the floor in a busy super market. I turned my back on Joe and played with Sam. Gave him ZERO attention but kept him safe. After 5 times he gave up...Mom won't give me the attention I seek. Joe may not have spoken but he was the GRANDEST manipulator of them ALL! People on the ASD spectrum are SMART! And they read people very well. If you are a sucker they got ya! And they will have you running in circles to make them happy. We parents figured that out and said NO WAY! We support each other and laugh at their efforts to control the environment. The weak get run over and the strong admire. So you better make sure your child has an EA or a BI that gets that....if you don't then your kid will NOT thrive...he/she will get what they want and stay stuck in that behavior forever. If you let that happen then it's your own dam fault. FIGHT like hell to bring them out and function well. Don't settle for a babysitter EA....it will ruin them in the end.

Thanks to my ASD parents for sharing with me and teaching me so much. I love you all!

Big Momma Love to you all! XO

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BYE BYE Easter Bunny!

This is Alex. He is just over a year old and belongs to my cousin Chris and his girlfriend Julia. CUTIE PIE! Just love the red hair. His first Easter egg hunt and it was in my back yard. He just LOVED it! The older kids were helping him out and Joe made bunny ears and followed Alex around like he was the Easter bunny pointing out eggs. Seriously cute stuff.

Here is Joe getting ready to be the bunny.

Along with the backyard egg hunt we went down to the big community egg hunt. We arrived early to get our spots and waited for over 30 minutes for it to start. By the time it started the bigger more aggressive kids had budged in front of my kids and they all just looked at me and said "I don't want to do this anymore." HUH? It didn't look fun anymore. It looked like chaos and survival of the fittest and I can't blame them. My Dad is one of the people that organizes it every year and it just gets bigger with fewer volunteers. One volunteer was manning the french fries in the trailer for hours and suffered a minor stroke. (Happy to report he will be okay) Add that it is a free event and you get all sorts of people out looking to score big. Kind of NOT the point of the egg hunt. Supposed to be fun and for the kids but you always get the parents and kids that think for themselves and push and shove to get more eggs. Some walk away with a basket overflowing and some with nothing. It's a real show for sure. And one that we will no longer go to. One that my Dad is mortified has turned into a battle instead of fun for the kids.

See for yourself!



CRAZY!

In keeping with my anti-consumerism quest I did not give the kids gifts Easter morning. We had the egg hunt the day before which was organized by my sister-in-law Nikki and my Aunt Val. I used to have the Easter Bunny come on Easter Sunday and the kids would wake up to baskets with chocolates, toys, clothes etc...But this year there was no bunny. And you know what? None of the them noticed except Ben! My oldest missed his basket but all the others didn't even expect a thing. Ben remembered though..lol....So I reminded him of our quest for the year. That I was not going to buy into yet another commercialized holiday. He looked all disappointed. So I reminded him that the day before we had an egg hunt which he got to set up and participate in. And that Mom had hired a photographer to capture family memories...much more important than garbage toys in a basket. He agreed. He said he had fun and it was okay.

So I asked around. What did you get your kids for Easter? Some said just some chocolate and an egg hunt. Some got more elaborate and gave their kids Ipods and expensive clothes. I get Christmas but Easter? Growing up my Mom always gave us chocolate and an outfit. It was months after Christmas and we generally needed new clothes for Spring. My kids don't have to wait. I go get them what they need at the time. And have a wonderful circle of friends giving me hand me downs. Woohoo! So....do I feel guilty there was no bunny surprise Sunday morning? NO! Not at all. And am not going to ever do it again. Easter egg hunts are fun though. The plastic containers came from the Salvation army and will be reused next year. My Aunt put them in hot bleached water and they came out new again. I have them put away for now.

Which brings me to the point of this post. Easter is for family. Nothing proved that more to me than having Tammy take all those photos and the joy on my family's face to have those memories on film forever. Even Ben got it. Hoping to have family photos done every Easter. The heck with the Easter Bunny. Come on over and lets enjoy a home cooked meal and some face time. Of course there will be chocolate..lol...but that is all I will buy. And it may be in cake form...lol....

Here is a pic of my brother and Grandma and Dad and I. Money better spent by far!

I know there will some of you that think I've gone too far...How can she ban the Easter Bunny? LOL! Well, I did it and feel good about it. I had every intention of doing the baskets and had bought some stuff last week. Going to keep it in the closet and bring it out when a rainy day gets out of control...and we all know about those..lol...

Still have to declare one more retail shop. Hubby went to get T-shirts at Jeans Warehouse and bought a pressure washer. So we are 104/115 days without retail therapy. It's getting harder though. Want to buy some clothes for me! Something spring like would be nice. Will look around a bit at the thrift stores.

Hope you had a fabulous Easter weekend. So nice to get 4 days together as a family.

Anti-Easter bunny Big Momma love to you all! XXOO

PS/ Read an article about the Seattle School District no longer calling Easter eggs by that name...kids and staff now have to refer to them as Spring Spheres...YEP! Spring Spheres! Say that really fast 10 times. LMAO!

Help! Which is the family pic to Print?

We had family photos done yesterday. Needless to say the above image is NOT my first choice..lol....It was once again an exercise in humour and patience...especially for Tammy, our photographer..lol..She took 248 pics of all of us including extended family. My Grandma made it out for the first time after her hip surgery and we were all so grateful to have her there. She certainly enjoyed watching Ron and I try to manhandle these boys into a decent family pic. So here is how it progressed.....

First to goof off was Joe....he looked like he was going to blow his top. LOL!

Then it was Sam...he had just decided he was done with this and started walking away...LOL!

Then Ty thought he could just too........LOL!

 Then Ben got into the act..LOL!

Then Ron had to get silly too..LOL!

Needless to say by the end of the photo shoot I was sweating bullets..LOL! But we did manage to get 2 decent shots. So here are the 2 choices for the one to print out and put in the 8 by 10 frame.

CHOICE #1

CHOICE #2

I like the number 1 because Bella is in it and number 2 for the sun. Which would you choose?  And thanks for your opinion in advance.

XXOO

I'm just so DAM TIRED!

Hubby came home yesterday...at the tale end of tax season and wouldn't you know it...I got my period! Needless to say I"M FUCKING EXHAUSTED! And to add to the whole thing I have 26 family members for dinner tomorrow....sweet serenity now! Will rally...always do. I'm so used to having this EXTRA reserve to be SUPER WOMAN.....but now have a double WHAM! We have all been there...those moments when you can pull it off but your body is saying NO! If I say PLEASE will you jump start a wee bit? And to top it off the two younger ones have been complete ASSHOLES! And of course missing Mom.

AHHHHHHH! Feel better...got it off my chest! You see....you are all kind of like my girl friends in a way..and my friends that are "boys". Sometimes when I sit down to write I am just venting...getting it out there...just saying it like it is..and just trying my best not to give in to my inner Whine. We all have that too...the inner Whine on your shoulder threatening to take you down and just walk away from all it.  Can't give in to that voice...can't give that voice the time of day.

Which brings in the principle of self love....sometimes you just have to give in...but just for a wee bit. No big drama or BIG meltdowns required...just let me cry my eyes out for a few hours and be good to go! Listen to tunes...have a bath with candles....write....hike...just stare at the sky...whatever you need to be whole again. TAKE IT! TAKE THE TIME!

I guarantee that if you take the time to melt down and give in to the whine in your own way...you will feel a hell of a lot BETTER! But don't drag it out like it's day time TV...take the moments....nobody remembers the entire day...they always remember the moments.

XO

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