Sunday, June 17, 2012

My Obligatory Father's Day Blog Post...sorry it's such a downer...

It seems like every autism blog has a special Father's Day blog post today, but I just don't have it in me.

I just haven't felt like writing these past few weeks.

Ever since Kyle had his seizures I've been on edge. My wife says I probably have PTSD.

And work's been extra stressful lately but I can't really get into that here...

And then my dad had a fall last week at his nursing home and is now in the hospital awaiting hip surgery. And with advanced parkinsons disease and at 82 years old & 110 pounds the recovery from that will probably not be easy.

And so I've been on edge. Kyle has been great, adjusting well to his new anti-seizure meds. My wife has been great, trying to talk me off the cliff.

But I've been in a FUNK. Snapping at the wife, snapping at Kyle, seeing the negatives before the positives.

On this Father's Day when all my followers are posting on my FB wall saying what a great dad I am, I readily admit that I am no picnic to live with a lot of the time. And I don't feel like a good dad, husband, son and brother these days. I can be extremely selfish.

As I said Kyle's been great, but I still get annoyed or
down if things don't go my way. For example, he's been sleeping GREAT lately from like 8:30pm- 6am which should have me singing from the rooftops but selfish me, I get annoyed if the kid stretches his bedtime to 9pm-9:30pm once in a while. And I don't get home til 6:45/7pm so you think I'd want an extra half hour to spend with my son, but no...I'm so spoiled with his 8:30 bedtime that an extra half hour ruins my plans.

Selfish father.

And what do i do with my evening once the kid goes to sleep? What am I rushing for? Do I hang with my wife and do we enjoy each others company? Well sometimes, but on many nights we are like 2 ships that pass in the night. She's doing her thing and I'm doing mine. And she's always got little fun non-autism projects (like planning her HS reunion) that she takes on to clear her head and she tries to get me involved in or talk to me about but I'd rather watch the game and stay in my funk.

Selfish husband.

And where am I writing this? I'm writing this while sitting at the hospital visiting my dad. I'm sitting next to my mom and I'm writing this on my phone. And I'll readily admit that I HATE being here. I can't stand visiting my dad in the hospital. I love him and I love my mom and I understand that I'm here "for support" but he gets nothing out of my visit. I'm not sure he gets exactly why he's here. And my mom is asleep in the chair next to me. So what am I doing here? I could be in my backyard watching my kid jump on the trampoline...or on my couch watching the Yankees game.

Selfish son.

And because I hate going to the hospital my poor sister who lives a lot father away from my parents than I do has taken on the brunt of the "support" visiting more than me, taking my mom back & forth, etc, etc.

Selfish brother.

Maybe the trauma of seeing the seizures really got to me.... Maybe the site of seeing my dad suffering from Parkinson's and knowing that it's hereditary and probably heading my way is too much for me.... Maybe I need a secondary antidepressant to go along with my good ol' Wellbutrin... (any suggestions are welcome :-)

As usual, I'm rambling. I'm gonna end it here.

On this Father's Day I just wanted you all to know that ol' Autism Daddy may talk a good game but I'm not winning any father of the year awards in my present state.

Maybe I should start a new tradition, the Fathers Day Resolution (instead of a new years resolution) and resolve to try to be a better father, son, husband.

That's all...over & out....

Happy Father's Day everyone! Wow what a freaking downer I am! :-)

25 comments:

  1. Please, please, please stop beating yourself up ...... nobodys perfect and you have more than most peoples 'issues' to deal with everyday. You need support too, you're not selfish just human & having a bit of a downer and being oh so honest about how you're feeling about the whole situation at the moment. You are a 'doing your best' dad, husband, son & brother and doing way better than millions of other men in this world.

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  2. One breath at a time. And give yourself credit for posting this, your blog is really really good and a lot of people couldn't imagine the stress you're under. Your blog really shines a light on the day to day issues that arise with having an autistic child and that is so vital! You're not selfish, you're coping. IMHO

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  3. Dear Autism Daddy...please be kind to yourself; please forgive yourself. Just look at what you're having to cope with right now. Take care.

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  4. You are real and you are human. Humans by nature are selfish otherwise how would we survive? I am sorry that your dad is ill and you have that added stress. Sometimes, we need to be selfish so we can give to ourselves before we run out of self. Spreading ourselves thin is the best way to crash and burn. It sounds like there are a lot of things pulling on your attention and energy now. Take care and happy day!

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  5. Hey like the others say plz don't beat urself up reading this post is exactly how Im feeling at the min. Am snapping at husband, kids feeling so down. Like u my son is 6 and has severe non verbal autism his behaviour is gettin it of hand -hitting, kicking etc can't get him to do anything.his younger bro is suffering he's only 2 and has no life at min we can't leave house. My dad is dying of cancer hate seeing him like this. Sorry didn't actually mean to go on about me there. But u got to remember ur human n u r gonna have these feeling and ur emotions r gonna b all over the place. We all look forward to kids bedtimes n after a stressful day at work/or home wi kids that's our savior seeing that clock n u no its melatonin time, as soon as kids r asleep me n hubby go our own way too lol n communicate by text lol i go to bed n watch tv he stays up on comp or catching up on his tv (we gotta record everything as dyl loves his tv mainly pause remind pause Hehe) i love ur posts and ur honesty x Christine x

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    1. Meant in the most positive way sometimes it is ok to have a pity party. By that I mean you have to see what can be improved and make small steps toward that. But don't get so far down you see no light. Also acknowledge what you are accomplishing. And I added celexa to my Wellbutrin and it made a world of difference.

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  6. You are human just likethe rest of us. It is ok to have selfish times I know I do.
    Enjoy your father's day.

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  7. Oh man -are you catholic? That sounds like an awful lot of guilt! You are human!!! Being selfish sometimes makes us better Parents, children and siblings. Cut yourself some slack. Oh BTW-I love your blog.

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  8. There is so much to say here.First I am glad nothing else happened with Kyle.I know seizures can lead to severe regressions,which I know you have mentioned before.Regressions suck,big time.Take it from someone who has had a buttload of them,caused by acute infection,or what I now know to be untreated,and undiagnosed metabolic crisis,that I nearly died from.

    I hope you saw the comment,about my mother dying I posted here on the May 14th entry.My mother had a severe stroke,and had a history of stroke.A lot of the genes that lead to a predisposition for stroke,can also cause some of the problems in folate metabolism,like I have.A lot of these same genes are linked to autism.She also had many of the same autoimmune problems my sister and I do.I have an autism diagnosis,part way between Asperger's and classic autism.My sister has Asperger's and epilepsy.

    We now know there are a number of genetic subtypes emerging of autism.Family medical history is key to figuring out which one you/your family has.The neurometabolic,and neuroimmune subtypes are two,and these often overlap,but the Parkinson's/Alzheimer's subtype/phenotype is a completely different one.If you can ignore the stuff about mercury this is one of the better introductions.More here,here,here,and a number of other places.This is a hot area of autism research,and they are always looking for families to study.

    Two people I would start with as far as contacting for help,and if the will see Kyle are Timothy Roberts,at Children's Hospital of Philadelphia,and Eric Hollander at Albert Einstein College of Medicine.I picked these two,because they are close to you.

    Good luck and Happy Father's Day!

    As with me,and my metabolic disease,if you want to get help,for Kyle,it might be best to contact people whho ks ago,about my mother dying.

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  9. You are dealing with a lot of stuff. It would overwhelm anyone. So give yourself a break. You are great:)

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  10. You are right, your selfish. What your wrong about it that you are alone...we all feel that way sometimes. It's human, and it's OK. Sometimes I miss the freedom I use to have, sometimes I wish I could go to the bathroom with the door closed, sometimes I wish I could follow through on my bedroom eyes to my husband without falling asleep in the middle of the wink wink. All selfish. But like you said, it's a funk. You have had a lot to deal with lately... go do something selfish, just for you. A movie, a car night, or going to the bathroom with the door closed while your wife covers you. I usually find when I am thinking selfish thoughts, it is really me just being really, really stressed and needing to do something for myself. You need to take care of yourself, so you can be there for your family. Oops, so I was wrong! It's not being selfish, it's called balance.
    Happy Father's Day! May your father's day resolution be, "working on balancing my life".

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  11. I'm so sorry that things are so tough for you now. Anyone would be overwhelmed with all the stresses you are dealing with. And if they say differently, they are a liar. Take care of yourself. Things are bound to get better. You are an amazing dad. I love reading your blog. You are more connected with your son than any other dad I know. Your love and adoration for Kyle is apparent. It's wonderful to see. It blesses me. Thank you and Happy Father's Day to you!

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  12. I completely understand how you feel. Whenever someone applauds me for raising a child with autism or says what a great mom I am, I just want to cry sometimes. I have my selfish moments and I hardly ever feel like a great mom. I struggle just to achieve decent mom status. I think we all go through it from time to time. And I am almost sure your wife understands the feeling as well. Keep your chin up. You're not alone. :)

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  13. sorry to hear that you are glum chum your family is in my prayer daily along with other families of special needs children an adults I to have had a hello dolly( haha)My husband spent five days in the hospital with an infection in his blood stream before he was reliesed, I had to put my mother in the hospital with kidney failure. then three days after they come home. Ifell down the stairs an broke my foot the doc put a cast on it an said no weight bering for four weeks which for some would not be a big deal but for me an my OCD I am going crasy everything has to be clean an in its place An I can't do nothing but sit on my ask me no more Questions (haha )I am laughing now but this morning I was siting on the torlet crying My son who is five an autistic is learning to pee in the potty but his aim is not so good so my bathroom semelt like the bathrooms at the gas stations very frustrating but I just have to try an remember they rome was not built in a day( haha)Your son an father are a blessing for the Lord an they are around for a reason. an so are you I feel all people need to know the struggles all parents with special needs go through you keep it real remember the good times an try to dwell on those for a while Its ok to have some down time without the bad we know not the good try to see the movie
    (couragious)the last statitics written were 75 percent of the families dealing with special needs children end in D word So you must be a a good father you an your wife are still raising your sonan together so thats a plus I will say so extre prayer for you Happy father's day

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  14. When you live in a world of routine and schedules and the same thing every day any change is going to be hard. we all think that only autistic people have a hard time with changing amd adapting when in all reality everyone does and everyone handles it in there own way. Dont blame yourself for your slump maybe you need to take some extra time for yourself to get back into routine.

    Hope you dads surgery goes well! Hang in there it will all be okay eventually!

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  15. I've gone through the same thing with my daughter and husband. I don't know what your experience with anti-depressants are, but they helped me out a lot. I was being irrational, snippy, and didn't really care. I'd lost my sense of humor. Pills (sertraline) got me through a tough year, and made the people around me much happier. Just a thought...

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  16. I say/think most of those things to myself as well.

    I don't know WHAT kind of husband, father, son, or brother you are in the grand scheme of things, but I think it's pretty instructive to look at the post you wrote and understand that you are seeing these things in yourself; that you feel the need to improve; that you think you could be doing a better job at all of the above.

    And assuming you're willing to continue to try to do the things you need to do to improve, I don't think there's any reason to 'judge' you as anything other than "very self-aware".

    There is never a day when I think to myself, "Today I was the PERFECT DAD!" There was always something else I could have done; always something I could have handled more gracefully; always more of my time I could have devoted less grudgingly. And parenting my kids is one of the few things I'm TRULY passionate about. And I beat myself up a little bit about it every time. I could have done more. I could have been better.

    But at the end of the day, I know I'm a good dad, and despite your current funk, I suspect you know what kind of father you are too.

    The rest is just a balancing act. Making quality time for EVERYONE you love. . . that's some hard shit, man. Nobody can do it all great all the time without showing some serious chinks in the armor.

    Hang in here.

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  17. we all have to lay low and lick our wounds occasionally. that's what makes this A community so freaking awesome, the "I get it" is always there!

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  18. The fact that you stick around and do what has to be done even when you really don't want to says a lot about you. Doing things when you're feeling chipper and good is easy. It's pulling yourself through the sludge and doing the bare minimum when you're in a funk that's hard. This too shall pass.

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  19. I can say that I appreciate your honesty so much and thank you for it. I get really angry at times when I think of my 2 grandchildren having autism. Then I think if not them, who? Would I really want to wish that on someone else? Heck no! There are days I fall into bed so brain drained I don't know how I do it but then I see my oldest daughter, soldiering on, looking for one thing that will help her connect to them and its humbling. Her sister, my youngest, has Downs Syndrome, and that was easy to deal with as there are set parameters and such but its a roller coaster with the kids daily. As for your father, he knows you are there. Having lost my niece last year, we know that the mind is not always gone even though it seems it is. Your mother appreciates you, too,so it brings her comfort. It's okay to want time to yourself, that is natural, we all do. Autism is a PUZZLE so no 2 things work that is what is soooo frustrating about it. However being honest about how you feel is good not a downer just more down on yourself so ease up. We can't all be saints :)

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  20. From one autism Daddy to another.

    It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly; who errs and comes short again and again; because there is not effort without error and shortcomings; but who does actually strive to do the deed; who knows the great enthusiasm, the great devotion, who spends himself in a worthy cause, who at the best knows in the end the triumph of high achievement and who at the worst, if he fails, at least he fails while daring greatly. So that his place shall never be with those cold and timid souls who know neither victory nor defeat.

    Theodore Roosevelt, "Man in the Arena" Speech given April 23, 1910
    26th president of US (1858 - 1919)

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  21. Found your blog through a facebook link today. Your post broke my heart. Having been where you are this is what I learned..... pain, whether it is emotional, mental or physical is a message from a Greater being telling you stop, take inventory of the good and the bad, adjust what you can, except what you can't, acknowledge your feelings, look at things from a different angle, trust in yourself and your God, look for answers from God (if you are a believer) and by all means except help from anyone offering. I ended up seeing a naturopathic (not sure of spelling) medical doctor. It honestly saved my life. Chelation therapy as well as adjustments to my diet and exercise and a few prescriptions have done wonders for me. (Chelation is used to remove toxic levels of heavy metals from the body in the US and Canada, everywhere else it is used for many, many things including depression, Alzheimer's, heart disease, etc....) It might be worth the google search to decide if it is something that might help you. Praying for you to have peace and happiness.

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  22. So normal to feel all those things...there's a meme on Pinterest that says basically "when I was a kid and I wanted to be an adult this is not the shit I expected." So true, so true.

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    1. I agree. Thank you for being so honest. I completely understand everything you said here. I've been there too with my mother in a hospital with dementia for almost six years. I agree with the posters here when they say we are just human.... and we do beat ourselves up....and we shouldn't.....and you are a great dad anyway...

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