Thursday, June 19, 2008

Where's Dad?

No we've not been on vacation, I've just been spending my days in the hunt for the elusive buck. Money for the family that is. I'm somewhat surprised with the current poll on how families provide for themselves financially.

It looks like most Autistic parents aren't able to relate to our situation. It has been VERY difficult to have a 9-5 job with the children having their needs and Robin's fibromyalgia where she needs at least two naps a day. I thought that a lot of other parents would have to be more 'stay at home' like us. But, then I got to thinking a bit and I'm guessing that most of the parents here have a lot less Autistic children then we do.


So please participate in the new poll to help us understand where you are coming from as far as family make up. Thanks

UPDATE: Question on the poll, someone said they have six Autistic children also, we like to meet/talk. Please email us at



Mom26children said...

Hi John and Robin,
We have 5 children with Autism and 1 child without....6 like you.
My husband works 2 jobs and I work a few part-time jobs. We do not rely on anyone to help us financially. We can not depend on that.
I see Patrick 1 to 2 nights a week and am the full-time caregiver of our children. I work around the kids school and therapy schedules.
I am considered "stay-at-home" and do work out of the home.
I know several families with many children with Autism..some 2, some 3, some up to 5 with Autism.
Both parent's work unless the father has a higher paying job.
Personally, I do not want to rely on outside sources to help our family financially. We were lucky to have received the Extreme Home Makeover house, but, contrary to popular belief, our monetary life has not changed.
I wish you well on your endeavor...


SanJosemomof5 said...

Hi John and Robin,

We've got 4 with ASD out of 5. We've been very blessed in that our children are pretty high functioning and have good cognitive and communication skills. Our almost 3 year old (birthday's at the end of July) was pretty non-verbal - she was making sounds but no real language. We fortunately received ABA, Speech and OT through a program out here in California called Early Start, and our regional center paid for it. That's a good thing because we couldn't have afforded half of the services otherwise. People just don't realize what the cost of services are. I get the statements from SARC and her ABA alone runs over a $100,000 for a year. That's a house for many people (well, not out here, but it's a good down payment).

My husband works full time for Apple (going on 19 years now) and I teach piano lessons part time. So that's how we make ends meet.

As I said, Early Start pays for Gillian's therapies at this time. Meghan, our almost 5 year old, receives 1 hour each of OT & speech and attends a special ed preschool through our district for 3.5 hours a day/5 days a week (Gilly goes into this program next fall). She attends a therapeutic play group once a week for 2 hours. We private pay for that. Both are clients through our regional center and we receive respite care funds (35 hours/month for Gilly and 24 hours/month for Meghan), so I've hired a babysitter that comes in to our home 3 days a week to watch the kids while I teach or run errands. The respite doesn't cover the entire amount I pay her ($15 an hour), but does pay 2/3 of it. I'm not sure how Utah works, but I'm my own vendor so I pay our babysitter and then SARC reimburses me.

Connor (12 with asperger's) is in regular education and receives no special ed services. He does see our case manager/therapist at Kaiser regularly and we've got him in Boy Scouts. Ian, our 18 year old with asperger's, attends a local community college. He qualifies for educational accomodations through the Disability and Educational Support program.

It is tiring and draining and stressful. But our faith gets us through. We are not rich by any stretch of the imagination but we are blessed and God always provides what we need, emotionally, physically and financially.

I've had ideas for businesses related to autism - opening a special needs learning store (sort of like lakeshore but with a special ed focus); opening a sensory gym for kids that would offer classes as well as having just a drop in/free play time where parents can bring their kids for a couple hours and get advice from OT's etc. on ways to help their kids' sensory/motor development while their kids have supervised play. I've thought about developing a respite coop where parents can team up with one or two other parents to provide respite care for each other. Those are just a few ideas.

I think your idea of writing a book is a great one and there are some ways you can go about publishing that don't have to cost an arm and a leg.

My prayer is that your discovery health documentary might lead to a more regular series for you and that might lead to more cash flow.

And keep up the tshirt sales. They are a GOD SEND!!! Meghan, our 4 year old, wears them constantly - she loves them and has a melt down if there isn't one available (because it's in the wash).

Hang in there. You're not alone.

Take care,

autismfamily said...

I have two boys on the spectrum, ages 12(next monday) and 13. We are in Los Angeles and I get paid by the state to be an IHSS worker. In home supportive services, basically a home health care worker.

You can be this for an elderly parent, spouse or child. California also has Regional Center. Have you looked into the state to reside?

There is a family in Orange County that was profiled in People and on tv several years ago that adopt children and young adults with disabilities and they are into acting and have a website. A google search should find them. I might even have something from 2005 on my site about them