When to put yourself before you special needs children

Lizze and I met with an attorney that specializes in disability claims. He was very pleasant and seemed very competent in this area of law.

However,  at this point it seems like bad news.  It’s not really even bad news it’s discouraging news more than anything else. 

Basically,  in today’s economic climate,  he won’t take the case because most of her disabling conditions are unprovable. Things like migraines,  fibromyalgia and nerve pain are unprovable because there is no definitive test for them.

What he said really makes sense and I don’t disagree with him but at the same time,  this is a pretty demoralizing. 

Basically,  we need to have Lizze reevaluated at the Cleveland Clinic.  Essentially,  no one will question the doctors at the Cleveland Clinic like they will the local doctors.

The problem with that is we will have to change insurance carriers.  This becomes much more complicated with 3 special needs kids that have various specialists,  doctors and therapists. 

If we change insurance carriers so that Lizze can get the help she needs and/or continue with the disability, the boys will lose some of the current support staff.  We will likely have to change pediatricians and the therapists the kids use for OT,  PT and Speech…

Lizze is not willing to do that to the boys.  I agree that we have the best doctors and therapists right now.  While this may not seem like a big deal,  but the boys are comfortable with who they are with now. Disrupting that would likely cause at least temporary setbacks.
The question comes down to when do you put yourself before your special needs day?

It’s kinda like the whole chicken and the egg thing.  I mean,  we always put the boys first but at what point is it in the boys best interest you me or Lizze to put ourselves first.

I’m of the opinion that we change carriers.  While PT,  OT,  and Speech are all important things,  in my heart I believe Lizze plays a more important role in our boys life than just about everything else. 

Does that make sense to anyone other than me?

I don’t know how or what else do here? 

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Lindsey

The tack we often take on dilemmas like this is that, objectively, everyone in our family has just as much value as anyone else. If your wife is going to suffer more in the long run by not switching insurance carriers than they kids would by doing so, then it's mommy's turn to be first. God knows it doesn't happen often, but sometimes it's important for the kids to know that families make sacrifices for each other, including for their parents.
My recent post With No Doubts, I'm Afraid

bek/the happy aspie

Have you looked into your state's sponsored healthcare plan for kids (Schip)? Here in Fla all kids are eligible and there is a special plan for special needs kids. It is nor Medicaid but does have a sliding scale premium. We found that more services and therapists were avail on it than on our insurance through hub's employer. Might be good to look into..if it can work for your kiddies than you could worry about switching your wife's insurance. I hope I am making sense…it's late here…
My recent post Asperger High

Stephanie Honeycutt

I agree with the idea of getting Lizze on the insurance she needs in order to keep the boys with the current team you have in place. I could not imagine having to change the group of Dr's and therapists we have for our Elijah. Also, perhaps the Dr's at the clinic will have mercy on your situation and agree to run the tests anyway, whether they get paid or not. You guys need a break. Hang in there and keep your chin up, both of you =)

Clementine

I hope there is a way for you to find an insurance company that your children's current therapists and doctors take that is also taken by the Cleveland Clinic. There has to be at least one out there…that would be the best solution possible. If there isn't one already ask their therapists and doctor's if they can apply to accept the Insurance Company that you have to switch to. Hopefully they will be accommodating and can help you make all of this work out for the best for everyone.

Jennifer

I'm a mom of 1 daughter with autism and 2 daughters with rare medical disorders.I am also their mom with fibromyalgia, migraines and a whole lot of other things, it took me 2 denials before I was awarded Social Security Disability (6 years later) and I had top doctors and also did the process myself. Please understand that the stress of changing doctors, therapists etc for your kids may make her medical problems worse (it has for me). Having to find the right fit for your kids can be hard. It causes set backs that some can overcome quickly but caused my daughter way to much time to gain back what she lost. My husband and I have had this same conversation also, it wasn't me putting my kids first so to speak, it was me not wanting to add to the stress that can trigger my medical issues. Just an opinion from another mom 🙂

Lost_and_Tired

Thank you fornyour insight. I hadn\’t thought of that. You bring up a very good point.

I have spoken with the kids therapist and they would handle the change without much trouble BUT if they don\’t…….

Thank you so much for sharing this. You have given me something to think about. 🙂

All the best

Amy

I would say that it's OK to put yourself first when the benefit of doing so extends to the children. Thought being that if the change in insurance means Lizzie can get better care and as a result can be better there for the kids, then it may be worth temporary setbacks if you think that the boys will recover in time. Just my thought.

Have you been able to get a second legal opinion? My husband (a former disability lawyer) has said that most social security lawyers only get paid after a case is won. Good luck!

Lost_and_Tired

I tend to agree with you. To me, the boys need there mother more than a particular therapist.

Your husband is right. The attorney\’s work on contingency. They problem is that there is no way to prove the amount of pain my wife is in. It\’s subjective. If there was an actual test to gauge the level of pain, that would be different.

It\’s gonna be a long road but one we will travel together, as a family. 🙂

JoL

Can you keep the boys on the insurance that you have now and just get Lizzie her own policy with the new carrier?

Onyx Panthyr

This is what I was thinking. Or with what Teresa said above.

Lost_and_Tired

🙂

whynotfathers

What would their lives be like without mom? the answer to that question will help you find the answer to the other question. the answer is never easy. I do like Teresa's idea above.

Lost_and_Tired

That is exactly what I\’m saying. Great minds.. Huh. 🙂

judyenaz

This is such a hard thing. Lizzie is thinking as a mommy. You are thinking as a husband and father. Both are right.
My first child was diagnosed at 17wks with a severe birth defect. I struggled in my third trimester with complications from his birth defect and ended up sick in the hospital. My husband wanted to protect me. I wanted to protect our son. I was afraid of losing him and my husband afraid of losing the both of us. We lost our son but became stronger together

But honestly, if Lizzie does not get the help she needs now, she will not be able to care for the boys. She may not see this because she is the mommy. Yes, the boys will have change but they are not taking the backseat. You are making a change as a family to make the family stronger in the long run.

Lost_and_Tired

I\’m so sorry for your loss. You are absolutely right. I\’m looking at this from both perspectives. As her husband, I want her to be better and not have to live in pain. As a father, I want the boys to have their mother.

Lizze is so dedicated to us that she never takes care of herself. I just want us all to come through the tunnel, together.

Thank you for sharing this with me. I really truly appreciate it. 🙂

@JenTroester

I think helping your wife feel better and get the help she needs is more important right now. I am sure you will find fantastic therapists for the boys, and the setbacks won't be greater than then losing the help of their mom.

Teresa

Is there a possibility you can speak with your insurance company and see if they will make arrangements to let her go to Cleveland Clinic. If you explain your situation maybe they will work with you…just a thought. Best of luck to you!

Lost_and_Tired

That is actually on my list of things to work on in the morning.

I\’m hoping that I can even make arrangements forbthe current docs to takebthe new insurance, if we have to go down that road.

Thanks. Great advice 🙂

lcmccarty

I'm with Teresa – this is definitely worth checking into before you make any sweeping insurance changes! We have 3 special needs kiddos too (thank you, autism), and were having trouble finding a psychiatrist in-network. Long story short, I talked with our insurance company at length and they were willing to do a single-case agreement with the psychiatrist's office (who was out-of-network). Fortunately for us, the psychiatrist's business office was willing to work with our insurance company as well (after multiple conversations, extensive explanations, and some gentle persuading). Not all medical offices are willing to do this, but it worked out for us. It's absolutely worth your time and trouble to check into it. If you can get it arranged, it sure beats paying out of pocket or the headaches associated with making any insurance changes. Good luck!

Teresa

I used to work in a doctors office and was the person that fought the insurance companies to let our patients get the tests they needed. That was 11 yrs ago…. don't know how the rules have changed now. Not working now because I'm full time at home with my sons..one of which (10 years old) has AS. Good luck to you and let us know how it goes…hang in there!
Teresa

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