Monday, October 6, 2008

Autism X 6, FAQs

Frequently Asked Questions. In case some of you haven't heard what FAQs are. So, the past few days I've done a bit of lurking on blogs that have been talking about our documentary. I'm wondering if they watched the same one that I saw last Wednesday.

So I've decided to create a recurring post, called simply "FAQs". To make them easy to find, I will have a 'label' category of just the FAQs post. I hope to clear up a large number of misconceptions, misquotes and misinformation about us.

Question: Why did you keep having children when you knew they had Autism.

Answer: All of the children were born before we knew anything. We were first told that Bobby should be evaluated for a 'communication disorder' when he was 11 1/2, Mary, our youngest, was almost 5 months old. This was May 2005.

Question: How old were the rest of the children at that time?

Answer: Emma - 7, Nephi - 6, Sarah - 3 and Ammon - 1 1/2

Question: Wasn't Sarah the next child that you thought may have Autism?

Answer: We were concerned that something may be going on with Sarah. (May 2005). That summer Robin's parents visited us for their vacation. We live in Utah, they live in Minnesota. Robin's mother suggested that maybe something was wrong with Sarah's hearing. She didn't talk, but we weren't overly concerned because Nephi did not talk until he was 3 1/2. Sarah wasn't that old yet.

Question: So when did you find out about Sarah's Autism?

Answer: After Robin's mother's concerns we asked people at church and other friends what they thought. Some also suggested that something may be wrong. We were told of a pre-school in our school district where Sarah could be evaluated. This was August 2005. Two special education teachers visited with Robin and Sarah. They told Robin that they thought she was Autistic. We were shocked, we had no idea what Autism was. We thought she was like Nephi, just a slow talker. We didn't know yet that Nephi had Asperger's Syndrome. Looking back now, we figured that we were too close to the situation and had no idea that something serious was going on.

Question: Come on, you had no idea? No Doctors said anything?

Answer: No, not a single one. We suspected nothing ourselves until Bobby's school said he may have a 'communication disorder'.

Question: So you knew that Sarah had Autism in August 2005.

Answer: No, the preschool said they thought she was. They said they would need to do testing and evaluations once she was enrolled in the pre-school. The determination from the school was in December 2005. They said Autism. However, she did not have an official Doctors diagnoses until October 2006.

Question: Why did it take so long to get the Doctor diagnoses for Sarah?

Answer: John had just started working for a company with great pay and benefits when Sarah's school suggested Autism. (August 2005) We both took it hard, but it affected John's work performance as well. In December 2005 the pre-school said that Sarah HAD Autism. John's father died a few days later, after a long illness. It was a bad month. John asked for a lighter workload, but was told that he should take care of his family problems... at home. John's supervisor said that John had quit. This was not true. But, he had neither the physical or mental strength to fight it out. So we had no insurance for official Doctors diagnoses. We had to wait until Sarah's medicaid kicked in and then wait months for a Dept. of Mental Health appointment.

To be continued...


Cristina said...

Dear Robin,
My son who's now 13 didn't have an official diagnosis until he was 8. Although we had noticed his struggles well before than. But NO no doctors were willing to diagnose him either. I can SO relate to how this could happen to you. I don't think awareness of the Spectrum of Autism was as available then as it is now. He got diagnosed with everthing under the sun (psychiatrically speaking) until on doctor finally put it all together for us under the Autism Umbrella at 8. My youngest was diagnosed at 7 and we couldn't believe it because he was sooo intelligent and verbal, so we got 5 different opinions and it is Aspergers. So sorry for the struggles you've gone through.

Photog_Cristi said...

Your family is really an inspiration to all of us that deal with Autism on a daily basis. I watched your show and laughed... and cried... and went "Hey, thats a great idea!!!" (BTW, I am totally stealing your strapping the kid to the chair for a hair cut routine! My son reminds me ALOT of Ammon from your show)

We struggled to get a diagnosis for my son as well. He was my second child, my first is completly "NT" so when I had him I knew there was "something different" about him but when I started pushing the doctors at 6 months old no one listened. I was being parinoid or over protective. Then when he did not walk until he was over 2, it was because he was preemie (36 weeks, no bleeds, not preemie enough for those types of delays IMO).

I hope that your family is recieving the support and awareness that it deserves, families that have never delt with this have no idea how you can go for a long time and "not know" I still to this day have doubts about his diagnosis, then we have those days... that really remind me that Yes, its autism.

not just a mom said...

thank you so much for the answers to these questions and the ones to come. You do not have to explain yourselves, but it is so nice to hear about because so many struggle the same way and we all can learn from each other! We have 5 and our oldest (11) was just diagnosed this year and now we feel like we totally missed something. BUT the diagnosis was not a struggle, it was in fact pretty easy. I would like to thank families like yourselves that plowed the way for us "newbies" and would like to encourage you to say that dispite the nay-sayers you are doing something worthwhile and good for your kids and for us who don't know what they are doing! I have had so many come to me and give me advice and point me in the direction for helping my son so it (to me) is getting easier and there is not so much stigma attached. You do what you have to do! We have a WONDERFUL resource here in WV, it is the Autism Training Center based in Marshall University, EVERY STATE needs something like this, it is so incredible! Thank you for putting yourselves out there and helping others!!

Dawn! said...
This comment has been removed by a blog administrator.
Dawn! said...

Just found your blog. I have three children, all thru the miracle of adoption. Our oldest son, who is 9 years old, was diagnosed with Aspergers Syndrome this year. It has been a trial, and as you know, very tough at times. Thankfully we are LDS, so we know the purpose of life.

Janice Anderson said...

Great idea. Very clear explanation for those who are truly curious. For those who are simply critical and judgmental, nothing will ever be enough. I can't believe some people presume to make it their business as to how you handle your situation. You always have our love and prayers. Only wish we lived near so we could help with the day to day workings of your family.

saranordmann said...

You should post this in the FAQ section of your website.