Autism, Autism and More Autism

The “Help Me Grow” people are coming out again today to continue Emmett John’s evaluation. The more time that goes by the it looks like Emmett John will not escape the diagnosis.

He doesn’t talk yet. All he can do is grunt and squeal (very loud). He has become more aggressive towards Elliott Richard and Lizze. Emmett John hits Elliott Richard for no apparent reason. He also claws up Lizze’s face actually breaking the skin. She has scratches in various stages of healing on her chin and cheeks.

I don’t know why he does any of this. I think maybe he is just frustrated because he can’t communicate with us so he lashes out. I don’t know why he targets those two only but it’s getting old.

Lizze and I are both completely worn out and have nothing left. Some how we manage to get out of bed in the morning and get things going but that’s where the productivity ends. There are so many things that need to be done to this house but it comes down to money and energy, of which we have none.
I wish there were more agencies out there to help families like ours. We always fall into that grey area where there is little to no help.

The truth is that things just seem to keep getting more difficult to manage. I feel like I’m being crushed under this weight. I even dream about being crushed or drowning in the middle of the ocean. That tells me I’m pretty stressed out and overwhelmed.

Not sure how I’m going to pull this off. Sometimes I really think our only chance is a miracle.

LT

4 comments

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    • Cheryl on April 26, 2010 at 9:13 am
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    I agree with your comments about falling into the "grey" area of getting assistance. That is usually the case for a lot of us parents. In NYC, in order to go to a "autism" specialist doctor, you get charged between $500-$1000 dollars.. For the FIRST visit. I have health insurance, but none of the autism specialist doctors take any health insurance.. CRAZY!

    I don't understand because these kids need help, I am grateful that more exposure is being put on autism, but still it is just not enough.. There are no programs for these kids after school or on the weekends.

    Both my husband and I just take turns going out with friends.. We have nobody to watch Max but we each want each other to get a break so we just take turns.

    I too have days where I don't know what the hell is going to happen to me.. Yesterday, Max had toilet troubles and ended up with poop on his hand and in his mouth… It was crazy.. I must have thrown away like 100 toothbrushes in his lifetime. It's crazy when you are cleaning poop from the walls, floor, his body, his mouth…. What's crazier is when it becomes second nature to do that stuff.. Sometimes, I get soooo frustrated I end up throwing all his clothes away for that day.. I know I should wash them because I am not rich.. But sometimes, I just don't want to deal with it..

    Trust me when I tell you that you and Lizzie are incredibly strong.. But it's OK sometimes, to be incredibly tired and weakened by everything. Life is hard, but quitting is harder….

    Good luck to you guys.

    I really admire both your wife and yourself, you are dealing with things that I am sure, when you were both growing up, never thought you'd have to deal with. We all grow up, thinking, I will find a nice partner, have kids, have a good life… Life can truly deal you some crippling blows.

    But it's always one day at a time.. That's is all you can handle.

    1. Agreed. Gavin is on disability so many of the expenses are covered. Gavin's meds this month after the dosage change were over $1500. If he wasn't on disability we would never be able to afford them. The MAJOR downside to disability is the fact that you have to walk a very fine line financially. We can't have a savings or retirement account. We can't have whole life insurance either. We cannot have assets totaling like $4000 or more. If we did then his coverage would be at risk.

      I have been self employed since I destroyed my back on a call as a medic about 10 years ago. I had regular insurance for a very long time but it would cover very little of Gavin. Now I could never get regular health insurance for him they would never cover him. I can't even get life insurance for him cause they say he is high risk for suicide.

      I would have to win the lottery in order to move forward and become more stable. The system is not designed for families like ours. Something needs to be done and soon.

      I fear what life has left to throw at us. I know we are strong but we can only take so much.
      Thank you for your kind remarks. You guys are in our prayers. Just so you know you guys are truly inspiring to us. You are dealing with things we haven't had to deal with. Good luck.

      LT

    • Cheryl on April 26, 2010 at 9:13 am
    • Reply

    I agree with your comments about falling into the "grey" area of getting assistance. That is usually the case for a lot of us parents. In NYC, in order to go to a "autism" specialist doctor, you get charged between $500-$1000 dollars.. For the FIRST visit. I have health insurance, but none of the autism specialist doctors take any health insurance.. CRAZY!

    I don't understand because these kids need help, I am grateful that more exposure is being put on autism, but still it is just not enough.. There are no programs for these kids after school or on the weekends.

    Both my husband and I just take turns going out with friends.. We have nobody to watch Max but we each want each other to get a break so we just take turns.

    I too have days where I don't know what the hell is going to happen to me.. Yesterday, Max had toilet troubles and ended up with poop on his hand and in his mouth… It was crazy.. I must have thrown away like 100 toothbrushes in his lifetime. It's crazy when you are cleaning poop from the walls, floor, his body, his mouth…. What's crazier is when it becomes second nature to do that stuff.. Sometimes, I get soooo frustrated I end up throwing all his clothes away for that day.. I know I should wash them because I am not rich.. But sometimes, I just don't want to deal with it..

    Trust me when I tell you that you and Lizzie are incredibly strong.. But it's OK sometimes, to be incredibly tired and weakened by everything. Life is hard, but quitting is harder….

    Good luck to you guys.

    I really admire both your wife and yourself, you are dealing with things that I am sure, when you were both growing up, never thought you'd have to deal with. We all grow up, thinking, I will find a nice partner, have kids, have a good life… Life can truly deal you some crippling blows.

    But it's always one day at a time.. That's is all you can handle.

    1. Agreed. Gavin is on disability so many of the expenses are covered. Gavin's meds this month after the dosage change were over $1500. If he wasn't on disability we would never be able to afford them. The MAJOR downside to disability is the fact that you have to walk a very fine line financially. We can't have a savings or retirement account. We can't have whole life insurance either. We cannot have assets totaling like $4000 or more. If we did then his coverage would be at risk.

      I have been self employed since I destroyed my back on a call as a medic about 10 years ago. I had regular insurance for a very long time but it would cover very little of Gavin. Now I could never get regular health insurance for him they would never cover him. I can't even get life insurance for him cause they say he is high risk for suicide.

      I would have to win the lottery in order to move forward and become more stable. The system is not designed for families like ours. Something needs to be done and soon.

      I fear what life has left to throw at us. I know we are strong but we can only take so much.
      Thank you for your kind remarks. You guys are in our prayers. Just so you know you guys are truly inspiring to us. You are dealing with things we haven't had to deal with. Good luck.

      LT

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