Saturday, February 9, 2008

AutismBites Foundation and the Needs of Families

Thanks again for all of the great comments that we've received the past few days!

Reading through our emails, the comments here and the poll to the right that is still on going, it is obvious that there is a VERY large need out there for parents of Autistic children. Autistic parents, see it and KNOW it on a daily basis. But, for Autistic parents to finance ourselves with foundations to help... well that's a bit tough.

Autistic parents are already paying for their own children by getting a second mortgage or going into debt. Sadly, many are not able to do much for their children because Autistic parents don't have the money and the various ASSISTANCE PROGRAMS are not enough. Autistic parents of course have the compassion and understanding of all the challenges that Autism brings, we live it every day.

We need to find people of means (money) that can catch the vision of how financially devastating it is for Autistic parents... And to donate generously to the AutismBites Foundation. That is one of the primary reasons we've felt as a couple that we need to tell our story. We thought that the usual situation of ours would get the attention of the media. Its been pretty good so far, but we do hope for the attention to grow larger and larger.

And its not ALL about us, really!

More attention on Autism hopefully will bring the funding that is so very lacking in many different ways. If Autistic parents can get a full 8 hours of ABA for their children every day. If parents had the financing for diets, intervention and treatments. If Autistic parents had the funds to make their homes safe for their children. IF...IF...IF... then maybe, just maybe... some serious progress can be made.

My goals for my children? Have them get to the point where they can be completely independent and provide for themselves when they reach adult age. We cannot live forever to take care of them.

We didn't ask for this. If our children were six "normal" children we would take care of their needs just fine. The stresses, needs and obligations that I have had to handle as the Dad, has lost me a number of jobs and the provided insurance. I'd imagine that other fathers have faced similar challenges. Tell me if I'm wrong here. Has other Moms been depressed and wonder if they can make it through the day?

So... if Autistic parents could get the support and understanding of their neighborhoods, schools, communities, state and national governments and leaders, friends, the rich and famous AND even their families. It wouldn't be so hard! Most of these children would improve. For those detractors with their calculators in hand, it will cost pennies now OR dollars later. Which would you prefer?

Dad

15 comments:

Monstie's Mom said...

This is really great what you are doing here. My son (4 yrs) has Autism. He is such a joy, but I just cannot imagine having 6 with Autism. You are in my prayers.

I just wanted to share my biggest complaint about getting Daniel some therapy... his insurance company wouldn't cover it because it "isn't medically necessary". My son's doctor, service coordinator and the therapy center have been wonderful, and we've been able to get OT and Speech Therapy once a week. I'd like more, but we'll take what we can get.

Best wishes to you and your family!

kvmoose said...

where do you get teh restraint used to help your daughter sit at the table. I NEED one for my son.

You can feel free to e-mail me privately if that is best

Mom26children said...

Hi John,
Flame is fleeting. In a couple of months, there will be a family with 7 Autistic children, then 8. At the time they interviewed us for our home, we were the only people with a documented 5 children. If we persued, Meaghan would most definitely fit in somewhere with Autism. No reason to rock that boat.
I think the problem is that most folks are fighting for their one or two children with autism and are having a hard enough time financially to finance AutismBites.
I wish you well on this endeavor..
Jeanette

JessicaMachelle said...

I saw your article at work last week, and wanted to come by and say that it is amazing that you two are doing what you are doing. I am in California working for a company that does the ABA early intervention therapy. I am not sure how it is in Utah but I know here it is generally funded by the Regional Center (if the child is under 3) or by the School District. I wish you the best for everything.

Leslie said...

mom26children, I couldn't agree more. I have a 12 year old son with autism and all I hope for is that someday he will be as much of a productive member of society as possible. Unfortunately in the beginning I lost everything and the public schools in Desoto Kansas wanted to put my son in a program with all non-verbal down syndrome children. The problem is that we knew that we could not put him in there with these other children because we were already seeing him mimick so much with a private educational program (very expensive, we filed bankruptcy with our other bills so we could make sure we could pay for this program). My husband and I divorced because of the stress that we were under and I moved to another town that could give my son a chance with the school district. But, 5 years later, we are married again and trying to get our family on track. I don't think my story is unique, I think we as a community need to push ourselves and our kids to be the very best we can be.
I hope someday that we will be able to find out why autism happens (personally for me I think it is was the rhogam shot I was given with my first and second pregnancy, since my kids were 15 months apart and I took the shot both times because I am RH negative, I think he has mercury poisoning from the thermosil). But, again something I can't prove. I wish you all the best in your journey and look forward to reading the blogs and trying to provide some support (most likely not financially because we are already maxxed out).

Anonymous said...

I have a child with autism.... I have commented here before. I can't imagine the pains of raising 6 (with all costs of therapies, education etc).I am wondering though, are u interested in REAL help. Help that can ease your children of the parts of autism that hurt? if so, please contact me. I would love to help. MOney helps, yes.. and If I had some I'd share it with you. What I do have is answers to how my son is being recovered and many childrenlike him are being recovered. we can getto the bottom of autism,. it is definitely not the same journey or answer for each person. but, your burden can be lessoned. and you can enjoy your children and family even more.
Gina
ginalaverde@hotmail.com

Karen_F said...

Hello there, I have 1 autistic boy, with 2 other children, and in many ways am still grieving some days better, some days not - though the not days are becoming less and less.

I just wanted to comment on the joy your story has brought for me, and the feelings of normalcy for my own life and the things we face after reading about your family and seeing the pictures of your house.

I've commented on your family in my blog, it's been a while since I've written in it, and you've inspired me to continue on.

I also salute you on your marriage and pray you may always be the best of friends to each other, my husband and I find the laughter overrules the tears in our house :)

M.O.B. (Mother Of Boys) said...

I am a mother of 3 boys. Two have been officially diagnosed with Autism and we are in the midst of having our third diagnosed (I will be surprised if they find anything other than Autism).

I read the article, in People, and am glad to know that there are other parents out there, going through similar situations. The support groups, around where we live, are either too far away or of different social status (we don't meet up to their standards).

I have bookmarked your blog and will be visiting as often as I can.

dori said...

Hello - I just discovered your blog and family tonight. Thank you for making this site. I also have a site, www.criscollrj.com/Blog that is about autism and deafness. Our children are 17, (boy); 13, (girl), and 5 (boy), and the oldest, Chris, has austim and total deafness (he wasn't dx'd until 14 with the deafness!); Colleen has Asperger's syndrome and ADHD but is extremely high functioning; and Ryan has hearing loss (which led us to testing Chris AGAIN after nonconclusive testing when he was 4-5 years old) and PDD and ADHD.

boy what a journey. I'm sure you know…

I'll be adding you and keeping on reading…

Kris B. said...

I agree and hope that Autismbites gets going and that you can help people and their kids. The system needs a BIG change. Their guidelines don't always fit every kid so the ones it doesn't fit get pushed to the side, these children need just as much help. My son is 3 was diagnosed at age 2, when he was tested for a program through the school district here they had so much fun with him they made him take an over 4 hour test. I of course was not having fun. They were like wow we have never gotten this far into the testing before and I was like who cares your not going to have to deal with him now that you have wired up his brain so much. I was told once the testing was done your child is too smart for the program he was 2 with an academic level of a 6 year old. Then they proceed to tell me put him in a preschool or montesory school the problem is once you tell these schools about your child they say sorry we can't take him he is a liability. So here my child gets punished for being to smart, no programs to help him mainstream into the schools, no one to help me show him its okay to be around other kids, not to hit or bite etc. We has parents need help and so do our kids by people who actually understand.

Anonymous said...

While I think your site is very helpful in raising awareness about the issues that families dealing with autism encounter it is interesting that you remove postings that don't agree with you. I posted a few days ago and you took it off--I said nothing rude or inflammatory but simply stated my own opinion. It's too bad that you are not willing to grant everyone the same rights that you seek for yourself.

Tasha said...

Hello!!

I saw your article in People magazine, and found your site through ABC.

I was wondering if you have any information regarding Applied Behavior Anaylsis and the waiver that you can apply for, to get in home therapy with your children. I am in college to become a behavior analyst and I have seen amazing strides in the children I work with -- children who came to us nonverbal can now request items and activities they would like, make good eye contact, and their problem behaviors have decreased, just to name afew things Applied BEhavior Analysis helps with.

I wish the best for your entire family!!

Tasha
Piper_W@hotmail.com

Amy said...

I like the idea of the foundation. My 3-year-old daughter is autistic and just completed a feeding therapy program. Our insurance covered some of it, but we had to pay a very hefty co-pay. We were able to get some donations, but we still had to pay quite a bit of money for therapy. I'm expecting another baby in late March/early April, and to say we don't exactly have extra cash right now is an understatement.

I really hope the foundation gets on its feet and helps out families like ours so our kids can get what they need.

You're doing a great job with all your kids. I only have one with autism, and that's plenty. I'm just hoping that the baby I'm carrying doesn't have it as well.

sanjosemom said...

I hear these stories all the time - parents paying for therapies out of their own pocket, etc. We've been very blessed - our 4 year old received services through the district including OT and Speech and a special day class and our 2 year old receives 25 hours a week of in home ABA, speech and OT and we're going to hopefully start in a play group next month. The 2 year old's program is paid through the Early Start program (SCCOE & SARC are the agencies responsible) and we get the statements, so we know there is NO WAY we could afford this level of service on our own - not without going bankrupt.

Our boys, 18 & 11, have Asperger's and so it's been harder to get paid services for them. When our 18 year was diagnosed 6 years ago there just wasn't much out there to begin with, so we paid for social skills training out of pocket for a year. Our 11 year old could use mostly a social skills group and unfortunately that's the area the schools are most lacking in, I fear. Thank goodness for the Boy Scouts. That's helped our 11 year old a lot.

Anyway, hang in there. And bless you for the work you're doing.

wendy said...

hello i just wented to let u know i have 2 boys officially diagnosed with autism.i just cant imagine having 6 kids with it.my heart goes out to u and your family