Thursday, May 29, 2008

Speaking About Autism

Yesterday I had the privilege of being the last speaker for the annual fundraising breakfast for the Arc of Utah. Here is the the text of my speech:

The ARC Fundraising Breakfast
Hogle Zoo – May 28, 2008

Good morning ladies and gentlemen. My name is John Kirton and I live just down the road here in… Murray. It’s possible you may recognize me. The past few months my family has received a LOT… of media attention. My family is with me today (show picture), however in spirit only. I’ll explain why in a few moments.

In case you’ve missed seeing us in the media attention I mentioned, we have been on the front page of the Sunday edition of the Deseret Morning News, we were in a 6 page article of ‘People’ magazine, we have been featured on Good Morning America, Inside Edition, Larry King and locally on channel 2 and 4 (twice) and recently mentioned on channel 5. We have also been interviewed on 4 radio programs including KSL radio locally. We have our own website, a blog and our own line of t-shirts. AND… we have just completed filming and now begins the editing process, for a documentary about our family, to be shown this fall on the Discovery Health channel. We are not as well known as our fellow Murray resident, David Archeleta, but we are trying.

But… this is the first time we’ve been asked to speak. I’d like to thank Emily Flinkstrom of the Arc of Utah for inviting me here today to help with this VERY worthy and needed cause.

So who in the heck (HECK, that’s a little Utah lingo for those from Tooele) are we? It turns out that we are the ONLY family in the United States, to have six biological… Autistic children… in one family. And to clear up a question we get all the time… Mary, our youngest, was around 18 months old when we first started to find out about the Autism the children had. So they were all here already and NO we don’t have Munchhausen syndrome. Bobby, the oldest, is from my wife’s first marriage and the other five we’ve had together.

The reason my wife could not join us today is because we have 3 schools we have to get the children off to each morning and she is taking care of things this morning. Our day begins at 5:45 and it usually goes something like this:

1. The alarm goes off, Robin gets up, turns it off and gets into the shower
2. I roll over
3. Robin comes back into the bedroom and tells me I need to get up soon
4. I roll over again
5. Robin gathers the 3 youngest children’s clothes in the living room
6. Robin tells me I need to get up!! and get baths started
7. I roll… out of bed and start to fill the bath tub
8. I open up the little children’s door and Ammon (4) bursts out and runs for the bathroom, he flaps his hands and shakes his head excitedly, waiting to be undressed.
9. Meanwhile… Robin is shoveling down a bowl of cereal
10. Ammon is pouring water on his head as I get Mary (3) out of bed, half of the time she is happy the other half she’s crying like she lost her favorite toy, and into the bathroom to be undressed and in to join her brother
11. Sarah (6) is still making noises from under her blankets while I start to wash the children.
12. I finish Ammon, get him dried off and give him a hug and send him into the living room where Robin gets him diapered and dressed
13. Next finishing her bath is Mary, dried and hugged and she is off to Mom to be diapered and dressed
14. Sarah is still hiding under a blanket, I need to coax her out usually involving a lot of fussing and screaming
15. But when she is finally in the tub, she submerges so that her nose and mouth just barely pokes above the level of the water
16. The other kids are getting cereal while they watch Sesame Street and Robin tells Bobby (14) that it’s now time for him to get up
17. I finish Sarah’s bath, dry and give hugs and send her in to the living room to be diapered and clothed as well.
18. Did you count the number of diapers? Yes it’s THREE.
19. Bobby’s now in the shower and one of us tells Emma (10) she has 5 minutes before she needs to get up, if we forget to give her a warning each morning she’ll likely have an emotional meltdown
20. Now it’s 7:15 and I help Robin get the 3 youngest into the car for the trip to the bus stop
21. Back in the house I’ll let Nephi (9) know that it’s time to get up and get going
22. Bobby’s eating, Emma is hopefully in the shower by now and Nephi is rolling out of bed
23. Robin gets back about 7:40 and Bobby hops in the car for a ride to his school
24. I usually have to tell Emma to not use all the hot water so Nephi can have his shower, to which she’ll grump… that she’s almost done
25. Oh, did I forget to mention… we have ONE bathroom?
26. Nephi is now showering as Emma eats, then she informs us that she can’t find any underwear, so we must stop everything else and help her search for them
27. By now Nephi is eating breakfast, Emma is still looking for missing clothes
28. Nephi is done eating and is just about ready, Emma is finally dressed and eating, by now its ten minutes before they are to be at school and Emma still needs her hair dried ARGGGH!!
29. It’s now 8:40… all the children are where they are supposed to be, Robin is heading into the bedroom for her morning nap, she has fibromyalgia and tires easily. Me? I’m just glad for a few moments of peace and try to not think that tomorrow… we have to do it all over again.

Our journey, of the discovery, that we have SIX children with Autism has been very, very difficult. Six with Autism, we have the most in the country, maybe the world. We have received many comments to our blog and emails from people asking us how we do it. Many are in awe that we are able to make it through each day having so many disabled children. Some days, we amaze ourselves.

But, we don't feel we are 'special'. We just wanted a larger family. We love our children. But, now we have a much larger challenge… then just a large family. Each of our children have special needs, many needs. Needs they cannot tell us about. Even the older ones who can talk, but are not able to express their feelings verbally very well. It can be very frustrating AND tiring trying to figure out what we, as parents, can do.

When our People magazine article first came out. Robin commented, to family and friends that we were hoping to finally get some help that we need. Some thought we were looking for a free ride in life. Poor us, look how tough our lives are. That is not what she meant! She was talking treatments, schooling, diet, and supplements... any and all things we can do to help our children.

My last 3 jobs I've either lost, left or been told that with taking time off to help my family... “It’s not working for the company”. I’ve since had to start a home based “business consulting” company where I can take time for my family as needed. Nearly ALL insurance companies pay for NO Autism treatments, not that we have any insurance ourselves, like MANY other families of disabled children. And most Doctor's don't know what to do.

Parents with disabled children are often alone in their struggles. So WHY did we put ourselves out there in front of the world? And to speak before groups, such as this, here today? I wrote this on our blog recently.

We have 3 main reasons to get the word out… about our family.

1) Increase the awareness and understanding of Autism.

2) From our example (we know we're not perfect) give hope to other parents struggling with their marriage and children.

3) To increase the giving of funds to help families struggling with disabilities

For me personally, I want to help the Dads out there, that are ready to throw in the towel. DO NOT abandon your child; DO NOT abandon your wife and family. Too often we hear that the mother is alone… caring for a disabled child, because the father couldn’t ‘handle’ the disability diagnosis. TOO BAD, TOO BAD… life is not all sunshine and lollipops. But… if you could use someone to talk to, a shoulder to cry on… here I am. You can call me anytime. I DO understand EXACTLY what you are going through.

Sorry for getting on my soapbox there for a minute, I’m just a little compassionate about the subject.

So… how do parents and families like ours, afford it all? The treatments, interventions, schooling, diet, and supplements, etc., etc., etc? Surely the state has funding or probably the Federal government helps, right? Unfortunately, the disability population is found wanting for needed services. We cannot rely on services offered through our government because they are limited, if available at all, to many families. The Arc of Utah is a private nonprofit and therefore, is funded through private donations, grants, and fundraisers. Families receive help from organizations like, The Arc of Utah who offer support, information and all the wonderful programs you’ve heard about this morning.

People with disabilities DO deserve to live happy and fulfilling lives… just like you and I. They can and DO contribute wonderfully to society and our communities. It is EXTREMELY important to support a cause, like the ARC of Utah, to improve their lives and their families. Today you have heard, several testimonials emphasizing the life changing ability of The Arc’s services. This is your chance to help The Arc continue… to help.

In the business world there are ‘angel investors’ who save struggling companies. Angels in another definition can ‘save individuals in perilous times’. The ARC helps struggling families, who are in perilous times. Would you be our ‘angels’ today?.....

Your table captain has passed out a pledge form to each of you. Please take a minute to look it over, fill it out, and return the top copy, along with your donation, to your table captain. You can also take the form with you and mail it to The Arc of Utah with your donation. No amount is too small, especially if you can pledge that amount each month for one year. The 50th Birthday Pledge listed on the form is a great way to honor The Arc’s 50 years of service. Together, we can make a big difference. Ladies and gentlemen… please get out your checkbooks. If what has been said today has touched your heart… be generous. I know that checks with lots of zeros will be much appreciated, however any amount… again… will be gladly accepted.

As a reminder, some of you may work for companies that match donations; this can be a great way to double your donation. All donations are tax deductible of course.

I want to thank our sponsors… Wells Fargo, Human Capabilities, and the Hogle Zoo. If anyone has any questions for me, I’ll be glad to stay afterwards.

Thank you for coming and supporting such a worthy cause. (End of speech)

It was pretty cool to be asked to give the talk and it gave us the opportunity to give back somewhat. I haven't heard what the total amount received yet was, but I'm hoping that it will be something BIG.



E said...

I hope you have read about the school, I forget where, in wich the teacher had a vote from the other kids in the class on whether they should allow a boy with autism to stay in class. They voted 14 to 2 that he should leave. Look in CNN or one of the other news network sites for the story.

SanJosemomof5 said...

This isn't really about your speech, although I really enjoyed reading it. It's about the tshirts. I love them. My kids' therapists and teachers love them as well. My question, however, is could I get them in a darker color that doesn't show dirt etc. so much? I bleach the white and even then the dirt still shows and, as I'm sure you well know, kids with autism are not the neatest kids on the block. I'd love to get them in navy or red or purple. Anyway, just a suggestion. Keep up the good work.

Dadof6Autistickids said...

San Jose Mom,

"This isn't really about your speech, although I really enjoyed reading it. It's about the tshirts..."

I'm not sure what you mean here. I was very glad to do some giving back and hoped that my 'tale of woe' to the contributors at the breakfast would let them know how hard life is having special needs children.

Glad you like the shirts. We've been getting the gray ones more often ourselves. I'll look into other color choices, but I think I'd have to come up with a negative of the face so it shows up on a dark shirt. I think its fairly involved to get it done.