We Know How to Spend Money

We spend money like we have it.  We spend money like there is a tree in our yard that grows it.  We spend money because we are desperate to heal our child, give her every advantage and not look back with any regret.  My mantra: money can not stand in the way of our daughter's recovery.  I simply reject the idea of not doing something that may help her to speak, think and function because we can't afford it.

Do you believe my thinking is magical or unrealistic?  Should there be children that recover from autism because someone could afford it while others can't?  I can't sleep, literally, when I think about that. 

We currently spend the most money on medical treatments for our daughter.  She is being treated by doctors all over the country that we visit and speak to on the telephone.  She is getting healthier. She has been on a course of IVIG for the last eight months here in LA.  She recently had a colonoscopy and endoscope to check out her gut in the Boston area.  We consult bi-monthly with her DAN doctor by telephone.  She is on many prescription medicines and a variety of supplements. Her eye doctor is in NY.  We consult with a child psychiatrist and team in Bethesda to help tweak her social-emotional development.

We know how to spend money.

Did I mention that she also has occupational therapy, speech therapy, pilates and piano each week?  The OT and speech are several times a week.  She does pilates with a pediatric physical therapist.  Some of the OT is funded through our school district.  Some of the speech is supposed to be reimbursed by the school district.  That reminds me that I have to pay the retainer for the lawyer that got us all our school based services.  Then, there is the private preschool to pay for too.

We know how to spend money.

Please, God, let this next treatment recover our daughter.  We are in a HUGE financial hole, God.  We are just regular people, God.  The finances cause so much stress, separate from the autism.  Or is it separate?

Comments

[Daniel Faiella]

Yes we know how to spend money as well! You are so right, Everyone should get the treatments they need to recover there child no matter what there finances are, we all need to pull together and stop giving money to groups that only talk about Autism and not doing anything to help the familys dealing with it. My son Matthew is recovering from Autism with Adult Stem Cell and mHBOT.
Wish you the best!
Daniel Faiella
www.recoveringMatthew.blogspot.com

[Cherie Tiffany]

Please check with your dept of human services where you live Royce. In Iowa there are a couple "waiver" programs for kids with either mental health conditions or the ill & handicapped waiver which in a nutshell, when approved, gives the child Title 19/Medicaid services (not based on parent income here!) and once approved (it took us 8 months on waiting list), then all RX's, Dr visits, Psych visits, therapies ect that are not covered in full by my primary insurance are paid in full by Medicaid. Other services provided are social worker who takes my son with Asperger's into the community once a week to learn skills & comes to his school once a week to help him navigate the mine field that is the lunch room and the playground! The most recent addition to the services is Respite care which gives me 1 weekend a month for me and friends for my son to interact with! My son is watched by a licensed provider for the weekend (in his case we found a family that has a farm and he spends the weekend fishing & riding horses and chasing chickens!) and it's all paid for by the state. I actually had time to do laundry, clean my house & plant a garden with not ONE interruption! IT has been a life-saver for me. I, as a single mom with a $50,000 a year income could not make it work before this and ended up filing bankruptcy but after this program we're able to live. If your state does not have this available...start lobbying and use Iowa as the model...it's great!

[Royce]

Daniel:

Here, here. Thanks for your comment.

Royce

[Kim]

I too spend money like it grows on trees. At Whole Foods, Trader Joes, the DAN pediatrician who charges me $450 to walk in the door, my daughter's psychologist who is amazing at Floortime, online with Kirkman and Klaire Labs. Money once spent carelessly in shoe departments is now given wholeheartedly to anyone and anything that can help my daughter. I am an RN working in one of the lowest paid states in the country. The financial stress has destroyed my marriage. I often tell those close to me that autism is a condition for the rich. I am fortunate enough to be able to afford private therapists for my daughter but I see mothers at school whose children receive only what the school and state provide and who are on endless wait lists while their "window" slips away. Children who would benefit from ABA but who will not receive it b/c the school lacks funding. My daughter is highly verbal and very high functioning. I am amazingly lucky. But I cry for those whose children need so much more and do not get it. Whose mothers are so overwhelmed that it is all they can do to make it through the day without crying in public again. And I am outraged at the lack of resources and the lack of knowledge about this condition.

[Royce]

I know it, Kim. Thank you for sharing your story. You have a kindred spirit in Los Angeles :)

[Barbi]

Speaking of spending;my oldest daughter (neurotypical) won a grant for college Monday. Tuesday she said if she had not won it, she was not going to go because of money. I told her no way, Daddy said he'd take care of it! she said"No Mom, I can't let you spend money on me, when you need it for Joey!" That broke my heart! I feel like I neglect my other children to care for my autistc child! Both of my girls say they don't feel like that's true! But it makes me know how unselfish my 17yr old is!
Barbi

[Vicky]

I was blindly searching the web (again...) hoping to find a tidbit of information that will help us with our 5 year old autistic son, but found this instead. What it gave me that nothing else I've found has given is the knowledge that I am not alone in the financial struggle that we face. We are $80,000 in debt, have medical collection calls on a weekly basis, and don't even make enough money to pay our household bills, let alone the money to pay for our son's medical charges. He is doing private speech and OT, and we are traveling to a clinic in TX to get the biomedical treatments that are helping him to improve. Everyone around us says he is a different child now from what he was like after his regression, and we know we need to continue with his treatments, supplements, prescriptions, etc. but we just aren't sure where that money will come from. We can't even get a new credit card to put the charges on because of our medical collections. Too bad that money tree we planted in the backyard just seems to shrivel up and die on us. Does anyone know of any grants or other ways (besides Medicaide) to pay for biomedical treatments?

Thank you!

Vicky

[Royce]

We are right there with you, Vicky. The stress from our expenses is tremendous. I personally think that insurance companies should cover yearly trips to Maui for every parent of a special needs child as a way to help them reduce stress.