Truthful Reality

Sorry for the dreary posts today but it has been an especially bad day. Gavin is driving me absolutely out of my mind. We need to get him stabilized ASAP.

Emmett John is going through something. I wish I knew what it was so I could help him better. He is becoming so destructive. He gets angry for whatever reason and he lashes out. He knocks things over and throws what ever he can. He absolutely targets Elliott Richard. He hits him with blocks, cars and other toys. We stop him and try to tell him he can’t do that but he’s 22 months old and doesn’t understand. He screams alot ofΒ the time. It’s like he’s a bat and uses the high-pitched screeches to navigate with. We have somewhat learned to interpret his noises but we are always teaching him to use his words.

Elliott Richard is taking it for both sides. He has to deal with Gavin’s outbursts and now Emmett John’s aggression. I wish we were better able to shield him from all of this but we can’t. He is always glued to me. He has to be everywhere I am. It honestly doesn’t bother me at all. The problem is that Emmett John is going through the same Daddy phase. They fight over who gets to sit on my lap. It just never seems to end.

LizzeΒ is in the worst place health wise she has ever been. She can’t get rid of the migraines. Her fibromyalgia related pain doesn’t seem to ever give her a break. The only thing they can do for her to seriously, seriously medicate her. She avoids it when ever she can because the meds completely knock her out. That means she can’t drive or even watch the kids because they make her fall asleep in the middle of whatever it is she is doing. Instead of taking the pain meds and feeling better she just pushes through the pain. Amazing…

My back is in pretty bad shape lately. I really need surgery but I keep avoiding it because of the risk and down time. I spend every day trying to figure out how to keep us moving forward. We desperately need to get a van because our car is way to small and falling apart. Gavin and Emmett John are both special needs and they need their space. Right now we have 2 car seats and Gavin all in the back of a 94 lumina. Elliott Richard has nowhere to hide from Emmett John. We have almost had a van a few times now but it always slips through our fingers. I used to really stress out over bills but anymore they are a back burner issue to everything else going on. Why stress out over bills I can’t pay when my wife is sick and 2 of my 3 kids are at least autistic. When you only have so much energy left, you have to prioritize. The spring and summer are better times for the business and things get a bit easier but until that happens things just don’t always get paid.

Our house is falling apart around us. The kitchen sink and bathroom tub is leaking. There are no (not one single one) water shut off valves anywhere besides the hot water heater in the entire house. It’s all very old plumbing and going to be costly and challenging to fix.Β  One of these days I ‘m going to take pictures of the insanity that is our homes plumbing and post them. We also have about 20 oversized original (over 100 years old) windows that are all falling apart and way to expensive to replace. The wiring in the house is still knob and tube in some places and the updated parts of the house were poorly done. As a contractor I know how costly and difficult these things are to repair and/or replace and I hatehaving to fix them incorrectly just to make things work with what was already there.

We are in our house on a land contract so we can leave when ever we want. However, we have nowhere to go. Gavin significantly limits us to where we can live. Because of his meltdowns and other various behaviors we couldn’t live anywhere that shares a wall, ceiling or floor with anyone else. As parents to special needs children we already know that most people don’t understand.

My wife and kids deserve better than what I’m able to give them. Admittedly, my hands are tied in most of these matters but that doesn’t make me feel any better. I should be able to give them more.

I know I’m not alone in my feelings on this subject. Where is all the help for families like ours. MRDDΒ funding for Gavin is a complete joke. They were supposed to help with a fence so Gavin can safely play outside but that never happened. Now with Emmett John going down a similar path what are we supposed to do. Things are going to be even more challenging than they already are. We have very little help as it is.

I said when I first started blogging that I was going to tell it like it is. This is my/our reality. This blog is really my only escape. I’m not looking for or trying to elicit sympathy when I do these posts. I write what I need to get off my chest. It’s that much less I have to carry with me.

These are all truths my family and I live with everyday. Right now is just one of those really low points for me as a husband and father. It’s like I’m forced to watch my family crumble around me and there is nothing I can do to help. It’s like those dreams where you are running as fast as you can but aren’t getting anywhere. Maybe tomorrow will be a better day than today was. I never hold my breath anymore but I will certainly be grateful for a better day tomorrow.

LT

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  1. I am in 100% agreement with the other 2 comments. Especially about the comment made about your back pain. That alone is deibilitating. For many people that is their ONLY issue. I don't know what risks the sugury entails but if it turns out the benefits outweigh the risks, then I say, make that a priority. Make it a plan. With enough preperation, would your parents be on board with being temsporary caregivers while you heal? I know it sounds wayyy easier than it really is but your health is at stake. When we have these times of non-stop chaos here, I will often daydream about breaking my legs or getting into sometype of accident that required me to stay in the hopsital a few days just so I can rest (and get good drugs) because I feel thats the only time I can rest. Sounds silly, I know but I don't know how else to get away. I wish you lived in Oregon so you could at least get the state to pay for respite. You would qualify regardless of income. Its still hard though because not all respite providers are comfortable with Matt.

    I pray for Gavin to get stabilized asap.

    1. The problem with my back is that I have put on weight since I got hurt. I have become so used to the pain that I forget it's there most of the time. If I think about it I will notice it but usually it's ok. Lately the kids have been very clingy and that doesn't help.

      If I have the surgery then I can hurt myself again. The injury can't physically get worse if I just leave it the way that it is. The pain will flare up from time to time. I would be limited for a few months after the surgery. But honestly I am really affraid to have the surgery becasue in our lives anything that can happen will happen. Murphy's Law really applies to us.

      Lizze and I have both said many times something along the lines of "I wish I could just go crazy so I can go some where and get a break". As far as respite goes we have a dificult time getting the funding through the MRDD for Gavin. The respite care we have been offered in the past was sketchy at best. As overwhelming as Gavin can be we will not send him with someone we don't know or trust. There is no point to the respite care if all we are going too be doing is worrying about who he is with.

      We have learned that we can get family qualified as respite providers and MRDD will pay them instead. That seems like a win win situation but we haven't been able to really get any straight answers out of his rep. We are going to keep pushing that angle though cause it seems like our best option.

      Gavin does much better on a one to one level. If he were an only child alot of things would be different but that isn't the case. So he would do well if my parents were respite providers. The main problem is that everyone is just really busy with their own lives and we don't always seem to fit in anymore.

      Also we still haven't moved to lithium yet either. We are still waiting to hear from his doctor. Something has to give because I really think he is over medicated and what's the point if it's not helping….

      Thanks again….I hope is all going well for you guys… Please keep the updates coming when you get a chance πŸ™‚ You guys are always in our thoughts and prayers…..

      Rob

        • Nikky on April 27, 2010 at 5:53 am
        • Reply

        My vote is to get Emmett's rep to take both boys on… I'm just sayin. If I were closer I would get certified in a HEARTBEAT!!! (and the pay means nothing to me) again… just sayin. (And btw… I think it's total horse manure that someone who is at the opposite end of the country from you is more willing to take the time to help then certain other people…

        Perhaps you should delete my comments today πŸ˜‰ I seem to be on the beginnings of a hormonal rampage!

  2. I am in 100% agreement with the other 2 comments. Especially about the comment made about your back pain. That alone is deibilitating. For many people that is their ONLY issue. I don't know what risks the sugury entails but if it turns out the benefits outweigh the risks, then I say, make that a priority. Make it a plan. With enough preperation, would your parents be on board with being temsporary caregivers while you heal? I know it sounds wayyy easier than it really is but your health is at stake. When we have these times of non-stop chaos here, I will often daydream about breaking my legs or getting into sometype of accident that required me to stay in the hopsital a few days just so I can rest (and get good drugs) because I feel thats the only time I can rest. Sounds silly, I know but I don't know how else to get away. I wish you lived in Oregon so you could at least get the state to pay for respite. You would qualify regardless of income. Its still hard though because not all respite providers are comfortable with Matt.

    I pray for Gavin to get stabilized asap.

    1. The problem with my back is that I have put on weight since I got hurt. I have become so used to the pain that I forget it's there most of the time. If I think about it I will notice it but usually it's ok. Lately the kids have been very clingy and that doesn't help.

      If I have the surgery then I can hurt myself again. The injury can't physically get worse if I just leave it the way that it is. The pain will flare up from time to time. I would be limited for a few months after the surgery. But honestly I am really affraid to have the surgery becasue in our lives anything that can happen will happen. Murphy's Law really applies to us.

      Lizze and I have both said many times something along the lines of "I wish I could just go crazy so I can go some where and get a break". As far as respite goes we have a dificult time getting the funding through the MRDD for Gavin. The respite care we have been offered in the past was sketchy at best. As overwhelming as Gavin can be we will not send him with someone we don't know or trust. There is no point to the respite care if all we are going too be doing is worrying about who he is with.

      We have learned that we can get family qualified as respite providers and MRDD will pay them instead. That seems like a win win situation but we haven't been able to really get any straight answers out of his rep. We are going to keep pushing that angle though cause it seems like our best option.

      Gavin does much better on a one to one level. If he were an only child alot of things would be different but that isn't the case. So he would do well if my parents were respite providers. The main problem is that everyone is just really busy with their own lives and we don't always seem to fit in anymore.

      Also we still haven't moved to lithium yet either. We are still waiting to hear from his doctor. Something has to give because I really think he is over medicated and what's the point if it's not helping….

      Thanks again….I hope is all going well for you guys… Please keep the updates coming when you get a chance πŸ™‚ You guys are always in our thoughts and prayers…..

      Rob

        • Nikky on April 27, 2010 at 5:53 am
        • Reply

        My vote is to get Emmett's rep to take both boys on… I'm just sayin. If I were closer I would get certified in a HEARTBEAT!!! (and the pay means nothing to me) again… just sayin. (And btw… I think it's total horse manure that someone who is at the opposite end of the country from you is more willing to take the time to help then certain other people…

        Perhaps you should delete my comments today πŸ˜‰ I seem to be on the beginnings of a hormonal rampage!

    • Nikky on April 26, 2010 at 5:13 pm
    • Reply

    Is this case worker for Emmett any better then Gavin's? I know she was supposed to help get a waiver etc, I hope that she actually comes through!!! I know your feeling incredibly low right now Rob, but I am so serious when I say, what you guys go through on a daily basis humbles me – to no end.

    You are an amazing father who pushes through his own physical pain, and while you continually are amazed by Lizze's pushing through her own pain to function don't discount your own. While I don't share having a special needs child, or debilitating physical injuries or disorders (fibro) pregnancy reeks havoc on my body and I know how painful it can be to pick up a 21 month old bruiser. (sad comparison I know, but hey it's what I got). Back pain is no laughing matter – and I know how badly you need the surgery and can only guess at how much pain you must be in. Please don't sell yourself short and discount that just because everyone else has something going on, yours is less then theirs.

    I know I say it all the time… but I wish there was something I could do tangibly for you guys. All I can say is I love you both to pieces… and I sincerly hope that if there is ANYTHING I can do for you (if I had the money I'd gladly buy you a van and a new house and so many things) I hope you will let me know!

    *please ignore any spelling errors… my spelling sucks as is and pregnant brain makes it worse

    1. She seems to be great. She has actually been trying to get Gavin's MRDD rep on the phone with no luck. She told us today she has left Gavin's rep and her supervisor no less then 6 voicemails each and nothing has been returned.

      She is quiet frustrated also but she is not giving up on us. So I really like her. She's spunky and a go getter. That's just what we need right now. I'll let Lizze tell you about the evaluation this morning if she hasn't already.

      Thanks again Nikky

      Forgive my typing. I have become so used to using my Blackberry for everything that can no longer type on my computer….

        • Nikky on April 27, 2010 at 5:48 am
        • Reply

        I'm glad you guys got one good one out of 2! Atleast it was a 50/50 shot at one who is doing her job for the right reasons , right? πŸ™‚

        I'm use to posting from my phone too so no worries on typing πŸ˜‰

        And you are very welcome! She hasn't told me about the eval – but I find I get info in spurts πŸ˜‰ as she is ready to share – which is fine. If she takes too long I just bug the heck outta her πŸ˜‰ Or pull a stunt like not answer texts or the phone when she ACTUALLY calls me (in my defense – I was at the beach!!) πŸ˜‰
        You both know that you are very near and dear to my heart – and so are the boys! >big hugs<

    • Nikky on April 26, 2010 at 5:13 pm
    • Reply

    Is this case worker for Emmett any better then Gavin's? I know she was supposed to help get a waiver etc, I hope that she actually comes through!!! I know your feeling incredibly low right now Rob, but I am so serious when I say, what you guys go through on a daily basis humbles me – to no end.

    You are an amazing father who pushes through his own physical pain, and while you continually are amazed by Lizze's pushing through her own pain to function don't discount your own. While I don't share having a special needs child, or debilitating physical injuries or disorders (fibro) pregnancy reeks havoc on my body and I know how painful it can be to pick up a 21 month old bruiser. (sad comparison I know, but hey it's what I got). Back pain is no laughing matter – and I know how badly you need the surgery and can only guess at how much pain you must be in. Please don't sell yourself short and discount that just because everyone else has something going on, yours is less then theirs.

    I know I say it all the time… but I wish there was something I could do tangibly for you guys. All I can say is I love you both to pieces… and I sincerly hope that if there is ANYTHING I can do for you (if I had the money I'd gladly buy you a van and a new house and so many things) I hope you will let me know!

    *please ignore any spelling errors… my spelling sucks as is and pregnant brain makes it worse

    1. She seems to be great. She has actually been trying to get Gavin's MRDD rep on the phone with no luck. She told us today she has left Gavin's rep and her supervisor no less then 6 voicemails each and nothing has been returned.

      She is quiet frustrated also but she is not giving up on us. So I really like her. She's spunky and a go getter. That's just what we need right now. I'll let Lizze tell you about the evaluation this morning if she hasn't already.

      Thanks again Nikky

      Forgive my typing. I have become so used to using my Blackberry for everything that can no longer type on my computer….

        • Nikky on April 27, 2010 at 5:48 am
        • Reply

        I'm glad you guys got one good one out of 2! Atleast it was a 50/50 shot at one who is doing her job for the right reasons , right? πŸ™‚

        I'm use to posting from my phone too so no worries on typing πŸ˜‰

        And you are very welcome! She hasn't told me about the eval – but I find I get info in spurts πŸ˜‰ as she is ready to share – which is fine. If she takes too long I just bug the heck outta her πŸ˜‰ Or pull a stunt like not answer texts or the phone when she ACTUALLY calls me (in my defense – I was at the beach!!) πŸ˜‰
        You both know that you are very near and dear to my heart – and so are the boys! >big hugs<

    • Maureen Truffin on April 26, 2010 at 5:12 pm
    • Reply

    Rob,
    I honestly have absolutely no idea what to say. I wish that I had the magic words to make you feel better and give you the connections you need to fix everything around you! What I can give you is the knowledge of knowing that you and your family are always in my thoughts & prayers! You are an amazing father, even if you don't feel like it right now. I read your posts almost everyday, what you have done for your wife, Lizzie and her son, yours now, Gavin…unbelievable. Only a saint would do that! All of your children and your wife are lucky to have you! If I were closer, I would definitely be there to lend a helping hand…

    Thoughts and prayers always,
    Maureen

    1. Maureen,

      I think you give me to much credit πŸ™‚
      Thanks for everything you said, it means alot. I have to say that my wife is really the saint though. She does all of this and never complains. I don't know how she does it. I am truly lucky in that area. Talking to all my Walsh friends always takes me back.

      I might have some education based questions for you down the road. We are really trying to keep ahead of this for Emmett and get him as much earily intervention as possible. I'll probably need some good advice from a trusted source when the time comes πŸ™‚

      Thanks again for taking the time to write.

      Rob

    • Maureen Truffin on April 26, 2010 at 5:12 pm
    • Reply

    Rob,
    I honestly have absolutely no idea what to say. I wish that I had the magic words to make you feel better and give you the connections you need to fix everything around you! What I can give you is the knowledge of knowing that you and your family are always in my thoughts & prayers! You are an amazing father, even if you don't feel like it right now. I read your posts almost everyday, what you have done for your wife, Lizzie and her son, yours now, Gavin…unbelievable. Only a saint would do that! All of your children and your wife are lucky to have you! If I were closer, I would definitely be there to lend a helping hand…

    Thoughts and prayers always,
    Maureen

    1. Maureen,

      I think you give me to much credit πŸ™‚
      Thanks for everything you said, it means alot. I have to say that my wife is really the saint though. She does all of this and never complains. I don't know how she does it. I am truly lucky in that area. Talking to all my Walsh friends always takes me back.

      I might have some education based questions for you down the road. We are really trying to keep ahead of this for Emmett and get him as much earily intervention as possible. I'll probably need some good advice from a trusted source when the time comes πŸ™‚

      Thanks again for taking the time to write.

      Rob

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