I am feeling overwhelmed today. The newest update is that Lukas is getting a new speech therapist (we will miss our old one), he is increasing his play therapy to twice a week and we were referred for occupational therapy. I want to go above and beyond this because all the studies show that ABA therapy is so effective. There is one ABA (Applied Behavioral Analysis) preschool a hour away and their tuition is 2,500 a month! There is another program where tutors come into the home and it's also insanely expensive. The ABA school does have a waiting list for scholarships. For shits and giggles we are still going to go talk with them. Maybe God will open a door. Who knows? All I know is that this is the beginning of our journey and I am realizing that kids who have autism have limited resources. Early Intervention is great, but it is limited. After age three, we will rely on the public school system. I am not saying there is anything wrong with the public school system, I am just saying that intensive therapy, the kind that has scientific proof to show great improvement and progress in kids with autism is limited to the wealthy. I don't even know what my insurance will cover if he did get the diagnosis. As of yet, they have denied all claims and we have paid all therapies on a sliding scale fee with early intervention. It's terrible to want the best for your child, but not be able to give it. It's terrible to feel alone and like you have no real support. Fuck insurance companies and fuck you if you don't think that affordable health care is a right. I know my parents will read that and get mad at the profanity. Sorry Mom. Sorry Dad.
Another psychologist is going to come to our house soon to evaluate Lukas and tell us where she thinks he falls on the spectrum. To EI, it is a done deal. He is autistic. We just need to determine the level. I am shooting for high functioning. I think he will be of normal intelligence. We will see what the "experts" say. I am accepting of whoever Lukas is. What I am not accepting of is the roadblocks we will face. The money we will need but not have. The resources that are not available in our rural area. Today I am angry. Today I hate rich people. Today I hate politicians. Today I hate people with "typical" kids who think they had a tough day. Today I hate facebook pictures of people vacationing and laughing. Tomorrow is a new day. I can't wait for this one to end.
oh becky, i am sorry that things look so bleak to you, but you are right that tomorrow is a new day. with all we've been thru i certainly had my share of days when my first thought was "how soon can i go back to bed?".
ReplyDeletekeep the faith, battle the insurance fuckers, and do what needs for your boy. thinking of you guys, debbie
Thank you for your honesty. Sorry you are going through this with Lukas. You are not alone and you are showing others they aren't alone either. There is always a bright side to every situation. At least you have a husband and Lukas has a father to share life with. At least you have health insurance, although, I'm with you about that. I'm a little more conservative when I see people without insurance having baby after baby for free and getting their food, housing, and healthcare bills paid for them while we struggle to pay our premiums, meet our deductible, out of pocket and buy our own food a diapers for one all the while working to pay for everyone else's as well and having higher premiums for all of those who can't "afford" it, but that's another matter. I just pray Lukas will be taken care of and lead a normal life. Based on your other posts I think he will be just fine. Take care of yourself, Bekki. If you fall apart, then you will be no good to take care of him. Do something nice for yourself. You're a good mother and everyone needs a break sometimes. If you weren't a good mother you wouldn't even be worried about this stuff and you would have never picked up on it so early, early enough to receive an intervention. We are enrolling Jase in that program just incase. You never know what the future holds. Have faith that God didn't bring you this far to drop you now.
ReplyDeleteTrust me, I have the same vents. I'm one of the only people I know who didn't get my birth paid for and am still paying off Lukas lol. We are in the same boat. We have never had a penny of assistance. If you are super poor, you get help and if you are rich, you don't need it. It's us people in the middle who get the shaft. Thank you for the kind words, though. Also great you are already looking into early intervention. Try to base things off of his adjusted age. Lukas was a month early and really, no one ever mentioned to me about delays and whatnot. It wasn't until his speech was delayed that I really did research and realized that even a month early makes a huge difference. I won't fall apart. At moments, I do, but not overall. Lukas has super potential and I do think he is going to be an amazing person (he already is.) XOXO
ReplyDeleteBekki, I don't know how public you want to go with this. But, I was thinking, campaign for the schlorship...maybe make a "brochure" with pictures and cute things he does, etc. Sent it to the parties that make decisions with cover letter. Sent one every week until they are sick of seeing them, can't hurt.
ReplyDeleteIn addition, you could set up a page on Facebook and campaign there also. Letting people know the situation, etc. You never know you may read it and know just the answer to receive aid financial or otherwise.....I know this is going a little far. That is why I said, I didn't know how far public you wanted to go.
I love you all...hope you know that and am sending you all the good thoughts I can.....hang in there girl, you are doing a good job. Don't think otherwise, even on those days you want to run away. Yes, many a time I have felt that way.....as you know...
Vergie
I could have wrote that last paragraph myself. That's how I've felt for the last couple of weeks. Have you tried ... http://www.ssa.gov/pubs/10026.html#a0=0 ????
ReplyDeleteI have ... because I don't feel like my family should be short changed or go without because my kiddo is different "in his own way" and I don't think it's fair that I pay into the system, but I have to decide whether or not I am going to be able to afford to feed him, or pay his sky high medical bills ... because somewhere, someone, thinks it's okay to not give a shit about the people that need it. I LOVE YOU! Rachel I.