Mom's Debut...A Little Bit Means A Lot

Hello all! This is my first blog entry! My husband, John, has been asking me to write for a while. Well, here I am!

My name is Robin and I am 36 years old. As the mom of six autistic kids, every so often people comment "How do you do it?" and "I don't know how you do it." I really don't know what to say except "I don't really know how I do it either." I just do it, I have to, and of course, I want to, after all, they're my babies and I LOVE THEM SO MUCH.

When I say a little bit means a lot, this is huge, I want to shout it from the rooftops!!!!.....

A couple of days ago, Sarah, age 5, and Ammon, age 3, both classic autistics, ate their apple sauce with a spoon for the FIRST TIME! Yahoo!!!! Praise the good Lord in Heaven!!! John got out the video camera too, we were so proud.

And yesterday, we managed to barely survive a trip to the local health food store. I forgot to bring along our AutismBites t-shirts, oops....Well, when we got in, Sarah immediately went to the produce and started pawing the apples and screaming. We kept telling her no, but soon realized we had to give in, she was hungry. So, she quieted down as she chomped on that apple for dear life. We were almost done as we were in the dairy aisle getting some non-hydrogenated, soy spread that tastes a lot like butter. Sarah apparently had enough and really started screaming at this point. A woman shopper was near us, and as we left that aisle, our 9 year old Emma, mild Asperger's, said that that woman gave us a mean look. I calmly replied "It's okay, people give us mean looks a lot."!

....It also means a lot to us when people keep their little bitty mean looks to themselves, at least until we turn our backs and can't see them anymore.

Mom

Spongeboy Poopants and Ice Ice Baby

Ahhhh... the joys of Autism. Ammon (aka The Destroyer) just will not get out of his diaper diving mode. Yesterday he got it on his AND Sarah's bed, the walls, the carpet and a stylish smear across his forehead.

Today when I detected a familiar smell waifing from the children's room, I knew something was afoot... or a bum bum. As the change was taking place nothing appeared to be amiss, at first. Besides the 5 lbs load in the diaper of course. The smell still lingered. A closer look at his clothes and... yuccccck, poo poo smears on his chest. Hands too of course. But the funny thing was he wears a one piece overall outfit and there was no visible signs of entry... or escape. Huh?

Sarah LOVES ice. We discovered this when at a family gathering a few months ago my sister brought over some liters of pop and a bag of ice. Sarah can't get enough of the stuff, she started constantly asking for 'pop' (pronounced pa pa). She will bite and crunch it, with the melt dripping down her chin and onto her clothes.

At least it's not POOP!

Dad

Fighting Over Autism

I've been reading a lot lately about all the in-fighting in the Autism community. It reminds me of Jr. High when the main combatants went to the sand pit near the school right after the last bell.

We would like to know, not only how and maybe why our 6 children are on the Autism spectrum, but what can we do to help them today. We feel that from our research that it must
be a combination of genetics and environmental factors.

Autism Speaks has become the Autism fund raising 800 lbs gorilla. They are doing a lot of research and we are currently involved in the genome study they have funded. What I'd like to see is a branching out from a research mainly mode to include areas that can affect families now. Treatments, diet, education, etc. Follow-up on areas that are having some success and see what else a bunch of money may reveal. Then let us parents know what HELPS our kids. Something now, not just research of causes. That's a 'nice to know' for us that already have Autistic children.

Autism is a spectrum disorder. We need a spectrum approach that can allow the funding to be used for each group to have their own soap box. If Autism Speaks can put all of us under their umbrella, great, if not lets support a group that will.

I named our new blog Autism Bites because we were surprised by the news that all six of our children were ASD, 'snake bit' if you will. I would like to call for a stop to all the Autism community fighting. If well funded groups truly want to make Autism a thing of the past put your money where your mouth is. Not into your pockets, while providing lip service only.

Dad

Thank you, thank you verrry much (using an Elvis voice)

Today is Father's Day.

It is always a day of joy and sadness for me. I've not mentioned it before now, but I was married before and had 4 children from that marriage. My oldest son has forgiven me for divorcing his mother, but the other three I don't hear from on Father's day.

My son took me out to dinner Friday at a very chic Chinese restaurant (valet parking even) and then we went to see the opening of the new Fantastic Four. It was all very good. Just in case you are doing a count my total is yes...ten children who can call me Dad. Even if only 7 do so on a regular basis.

A great big thanks to all those who have bought our Autism Bites t-shirts in the last couple of weeks. Our champion buyer this past week was Daniel V. from Ohio who bought 4 t-shirts! Thanks to all and please do come here and comment about the t-shirts, especially when you buy some. What you like, don't like or any suggestions.

Thank you also for the kind and thoughtful words from the last blog. Its nice to know that we aren't the only ones that have bad days and that we have blogger friends. It is especially nice since I've been spending the last couple of days posting on a Yahoo Group and have been called a whiner, because I had a different opinion. I thought that not talking about religion or politics with friends was a bad idea. I'm learning that some people really get worked up and sometimes down right angry when it comes to the subject of Autism.

Lastly, thanks for making this blog one of your favorites on your blogs list. When you do let me know, if you list us I'd like to list you.

Dad

Some Days Its All Just Too Much

The last few days I been reading lots of Autism blogs, Autism Yahoo Groups, YouTube Autism stories and various books. I love my children so much and want to help them with diet or intervention or education or one of a million things it seems.

Today was a day that it was just too much.

Mom gets tired a lot and needs naps. Just trying to stay caught up with cleaning or washing wears her out. I understand. She was able to get breaks with 5 of the 6 attending various schooling...but now its summer and no breaks. When I get home from work I give her a break as much as I'm able. Made dinner, got the children to help clean up afterwards, watched a couple of educational cartoons with them, said evening prayers and got them off bed.

I get tired too, but many times I feel that I have to read just one more blog, website or book to learn more. To do a better job of being Dad. If I didn't have my magnetic rings I'd be completely wiped out. I wish for a job where I can be involved with Autism. Autism IS my life and I feel I need to learn and help and... SOMETHING more.

Today was a day that it was just too much.

I didn't feel like blogging today, but I think that if I don't have something new to say that people will stop coming by. And stop buying our Autism Bites t-shirts. We don't make much but we need all we can get.

Getting too pitiful here?

We've been getting advice on various treatments or diets. It would be great and I'm sure some of the suggested things will help. BUT, I see NO WAY to pay for it all. Special diets cost more then a regular one. Try that with a family of eight.

Boy, do I need a hit of Mom's Zoloft. Sorry to be such a downer today. Today was a day that it was just too much.

Dad

Autistic Family Assaults Arctic Circle

Today was a typical reason why our Autism t-shirts save some of our sanity.

Robin took ALL the children to a local hamburger place (Arctic Circle) for lunch with a play area. I stayed home to get a nap, she got hers when I made dinner and fed them.

Anyway, she said it started well. Just a little bickering among the older kids doing some of the usual, "Bobby's picking on me." Sarah (5) aka 'Tigger' getting up and down and out of her seat. Then as if on cue they all picked it up about 10 notches.

They were done eating and headed into the play area. I call this phase "the releasing of the hounds" something like a pack of baying dogs. They were LOUD, laughing, crying, fussing. Of course Robin just sat back ready to field any complaints or nasty looks. But Ammon (3) and Sarah (our classics) had on their Autism t-shirts. Ammon's was the: 'I'm Autistic, what's your excuse?!' Sarah's was: 'I'm Autistic and I think you're weird too!' shirts.

NO ONE SAID A THING! This has been happening more and more often, when we remember the t-shirts of course. Even when Ammon went to the front door and started his, open the door - watch it close, open the door - watch it close, routine.

Then he and Mary (2) decided to run back and forth between the play and eating areas. Still not a peep out of anyone, and the place was busy. About that time Robin decided to give everyone a break and headed up the gang for an assault on the Health Food store.

The t-shirts work, that is one of the reasons why we offer them to help the rest of you deal with the NT world. We found that shirts with 'words only' didn't work as well for us. People see our shirts with the large funny face and really take a moment to read the words.

Dad

Top 10 Snappy Answers to Annoying Comments

A friend sent us this great list.

If you're a parent with a child on the spectrum, you've probably responded to the same annoying remarks and questions a thousand times. Here's a handy list of responses that...you'll probably never use out loud (but are fun to imagine using)!

1) He can’t be autistic -- he can talk! (or make eye contact, smile, engage)
And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means …

2) Oh, she must be SO good at math! (or science or music)
Actually, her great talent is in memorizing and reciting lines from Sponge Bob videos! (Or those annoying Thomas the Tank Engine songs!)

3) All he needs is more discipline, and he’ll get the message.
Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4) You poor thing, it must be so upsetting to have a child with a disability.
Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…thanks so much!

5) Will he be able to go to college (or get married or hold down a job)?
Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job…

6) I have a friend whose child was autistic, and she cured him!
Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7) If she can’t behave properly, you shouldn’t BRING her to the grocery store!
Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service!

8) We can’t include him in typical classes, it wouldn’t be fair to the other kids.
Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great!

9) We can’t accept her at our school because she doesn’t have a learning disability
Ohhhh… what a shame! Oh, wait, look, she’s suddenly developed dyslexia! Can she come to your school now?

10) You should make more time for yourself!
You’re so right! So will you be babysitting tonight or tomorrow night?

Dad

Just Another Day in Paradise

We have been really thankful ever since some of the guys from church helped us get our backyard fenced. Now 'The Destroyer' and his sister assistants can 'play' out back. But, today the backyard was an eerie scene. It was like something right out of the Hitchcock movie - The Birds! They were all over the yard.

When I went out to see what was going on I discovered the remains of FOUR boxes of cereal on the mini-tramp, the concrete and around the corner of the house. Plus wrappers from Sarah's favorite candy, Airheads. When I first stepped out Sarah hurriedly scooted around the corner of the house clutching... NO! My bottle of liquid vitamins, just $30 a pop. The lid was no where to be found. Her mouth and the front of her clothes had the tell-tale signs of her having taken a few swigs. AGH!!

Oh, well looks like she'll be healthy and probably VERY regular. Glad I'll be at work tomorrow and not on poopy pants duty. ; )

The cause today? Like most days, the 8 and 9 yr olds 'forgot' to close the sliding door, AGAIN. So how was your day in Paradise?

Dad

The Day After...

It's the day after our families BIG debut on the front page of our local newspaper (see post below). We've received supporting email and of course comments here, (thank you) also a bunch of t-shirt sales on our website. Still none in Utah yet! ; )

Our reporter and photographer were here for two hours doing the story, which again was done very well. Unfortunately, they can't include everything we talked about, so I'd like to bring up a few things that we feel are important that was left out.

There were 3 things that got our stress level to the point where it resulted in our children being taken away by the state (S.T.I.N.K.S. : State Took Innocent Non-NT KidS) for 2 weeks.

1) Our Finances: bottom line we are dirt poor. As the story mentioned I lost a previous job, it paid well, it had insurance, we weren't poor then. But now with the need to take off 1, 2 or sometimes 3 days in a pay period...makes it tough. We do get SSI for 3 of the 6 children, got denied on the other 3, not 'disabled enough'. But that has just put us back to the annual pay of the previous job. End result: finances are a bit better then before S.T.I.N.K.S.

2) Respite: rest, a break from the children for Mom and Dad. The two that are 'Classic Autistic' get state funding for respite. At first when we received approval we were ecstatic! Then we were told the respite was for THEM only, none of the other four could be watched. So we use the help to pick up after the wreaking ball "The Destroyer", and other help around the house. We are VERY grateful, but it's not a break from it all. End result: About the same as before S.T.I.N.K.S.

3) The House: 3 bedroom, one bath, no basement for us eight. Right around 1200 sq. ft. We rent so it's not ours to do with what we need. The two older boys share the bedroom with our pantry shelves. Made that into our 4th bedroom. We'd like to buy a home, but the credit has taken a beating and we don't have enough income now (see #2). Extreme Home Makeover you ask? The rules are you have to OWN the home. End result: not much changed here either then before S.T.I.N.K.S.

Anyway, enough of that, need to take a few hits of Mom's Zoloft if I keep this up.

We picked up ten copies of the newspaper, hey! it's not everyday your family gets on the FRONT page. As I was getting rid of the other pages, I noticed that on the page just before the inside pages of our story, was a full page an ad for "Ivory Homes". Nice... new... BIG... homes that would fit our families needs. Hmmmm, dang it, where is that ZOLOFT!?

We would like to set up a non-profit something like the 'Make-a-wish' organization. The "Autism Bites Foundation". Families devastated emotionally and financially by Autism need help. Does any one know someone that can help us realize this dream? We'd like have an "Autism Bites" parents support group in every state also one day soon. How do parents become a member? Wear one of our t-shirts to the meeting and tell 'war' stories about your kids and cry and laugh with each other.

Angie, our news reporter, emailed to say that the story has already generated a bunch of interest. The Bottom Line?: If we can do some small part in making life a bit bearable for other Autistic parents, well then that would be a good...no a GREAT thing!

Love your kid(s), even if they don't notice you in the room. Even when they still use diapers at 9 yrs old. The best way to love your children? Love their Mom, or Dad. Don't give up, take a break, even if it's only in a locked bedroom for a hour or so.

Dad

Life with six children with autism practically defies description

The title above is my favorite quote from the newspaper story that came out today about our family. It was on the front page above the fold of the Salt Lake City newspaper, The Deseret News. Click here for the full story. The reporter, Angie Welling did a GREAT job. She got our quotes right, told about our t-shirt site (www.AutismBites.com) matched all of the pictures of the children with their names and told our story with compassion and humor. The way we like to tell it. The only mistake was this blogs address, I emailed her and hope it is fixed on the newspapers website. Don't want people going to a website that has a name close to ours, we want people to read about US! ; )

I guess our anonymity is gone now as far as this blog goes especially. If people want to come to our house to see the family who has the most Autistic kids...well, we worry about safety in this world today. But, we will gladly take donations dropped into out mailbox beside the door. : )

Anyway, please leave comments on the article, us, the children, questions or whatever.

Dad