Confessions of a special needs father: An unpleasant truth

Every once in awhile, I like to share something deeply personal. I do so in these Confessions posts. Today I want to share something that really has me torn,  deep down inside.

That something, is how I’ve felt since Gavin left yesterday.

I’m not going to rehash all that we go through when Gavin is home, because you can simply read back to find that out. 

I will say that Gavin’s behaviors add an extreme level of both stress and distress, to everyone in the household.  It’s so bad that we are looking for residential placement but have hit multiple obstacles, namely his health issues.

Gavin left for Lizze’s parents house for the weekend.  We both hate the idea of having to send one of our kids away,  in order to relieve everyone’s stress. Having said that,  it’s become a necessary evil absent of any type of residential care.

Gavin was picked up less than 24 hours ago,  but already,  the stress in the house has dissipated.

Everyone is more relaxed ad actually slept for nap time.

Elliott and Emmett are getting alone better and that’s a pretty big deal.

Speaking for myself,  I have found myself much calmer and far less stressed.  This is where the guilt comes into play.  I could very easily, find myself getting good used to this relative peace and quiet.  I don’t miss Gavin’s behaviors at all and I would hazard to guess,  no one else does either.

That’s not to say we don’t miss Gavin himself, but anymore, it’s very difficult to separate him from his behaviors.

I know rationally,  that I shouldn’t feel guilty because it’s quite human to feel this way.  However,  it’s really hard not to feel guilty about recognizing that everyone’s life improves with the absence of a single member of your family.

I could totally get used to this and I feel guilty,  deep down inside.

Life isn’t supposed to be this way, right? I mean, a family is supposed to be stronger together than when apart. What does it say,  when a family is stronger when a member is not present?

Either way,  breaks like this always seem to be tainted by feelings of guilt. 

I wish I could let go of the guilt and simply enjoy the time away from the stress of having Gavin in the house.  We all love Gavin.  We just can’t live with his behaviors anymore.  🙁

**Thanks for reading**

       -Lost and Tired

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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.

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Shira ABA

I really appreciate parents like you. You work hard to support your children with special needs AND you are in touch with reality. I am not going to tell you “don’t feel guilty” as I do not blame you or anyone else in your family feeling this way while he is away. Do the best you can, but also learn how to have limits and take care of yourself too once in a while. Gavin going to his grandparents house is good for him as well as the rest of the family. Hang in there.

lostandtired

@Shira ABA thank you so much for your support. I truly appreciate it. 🙂

hudginsvicky

Rob, since my son was born 16 years ago, I don't think I've had a "normal" or full night's sleep. I won't go into the damage this has done to my health, but mentally, physically, and emotionally I'm on empty. It's not just the sleep issue, but all the things that go with raising a special needs child 24/7.  It has impaired my ability to make sound decisions sometimes, and navigate the crazy world outside my doors. We feel isolated and alone in so many ways. Sometimes the situation has seemed hopeless.
 
My friend, you are suffering from extreme burnout from taking care of an entire family with special needs, including and especially Gavin. On top of that, you face all the pressures most of us face these days, primarily financial. I pray that you will very soon get some answers regarding Gavin's physical health issues, and will receive positive intervention in that area. It can be the smallest thing that brings the greatest relief.
 
Maybe being placed in residential care is in Gavin's future, but for the moment, try to take this one day at a time. You don't have to be perfect!  You are doing great. My guess is there are thousands of people lifting you up in prayer every single day, and I believe there is a God, and that He is listening and He cares — about all of you. You are not alone. Lean on Him.
 
When my son was just 3 years old a team of professionals, led by a noted behavioral specialist, advised us to place him in residential care. They deemed him severely emotionally disturbed. I refused. It was early in the IEP game for me, and a lot of things I didn't notice, or understand, were missed. The real problem was his placement, not him. This ended up being a regular problem. 
 
Through the years I've been told countless times what a labor-intensive child/student he is. I've literally had teachers tell me I was a bad parent, or try to put guilt trips on me for his behavior. It's been a terribly long haul, and I still have no idea if he will ever be able to fully function in the world without us, and I often make myself sick with worry.
 
I used to ask God why he made ME a parent of a special needs child. I simply could not measure up to so many other parents carrying the same, or similar responsibilities. They seemed so organized and capable, and financially better off. All I could see was what I couldn't bring to the table, not what I did bring. 
 
The answer has been that he is mine. No one will fight for him the way I do. No one will love him as much as I do. No one will sacrifice sleep, food, nice clothing, having a job and better income, time with friends, etc. etc. etc. — nobody will give what I do, because he is part of me. And what doesn't seem like a gift from God sometimes, has a value and purpose I cannot understand at this point in time. 
 
I wish the very best for you, Rob, and will keep you, your family, and especially Gavin in my prayers. I know he is very special.
 
Victoria

lostandtired

@hudginsvicky thank you for sharing a part of your life. You have am amazing story and you are an amazing parent. I don't know why we are choose for these roles but we are. There is a piece written about this very thing and it's hanging on the wall at our psychiatrists office.

Basically, it says that we are carefully selected to be the guides to our children . No one else could do the job that we do for our respective children. If I can find it, I'll post it.

Thanks again. 🙂

autiesmama

"Supposed to be" is a myth, Rob.  Just let that one wash over you and go on down the river.  My sons' grandmother, my mother, developed early onset dementia and the person we were "supposed" to have was gone. I know what you mean about the behaviors v. the loved one.  Mom's illness started at executive function and worked down, past stealing, lying, hoarding, but  hyper-sexuality,–*that* one took the cake. *sigh* My brilliant, loving, gracious mother eventually lost every single one of what we'd call  her "social filters."  I tell you this,only because I truly feel for you, loving someone who *cannot be* what they're "supposed to be."  And Rob, there was ALWAYS a little part of me, I swear to you,  that fully believed  she could control herself if she really tried, or if we really got her what she needed–this, after years of watching her decline and dealing with doctors and absolutely knowing the hard truth.  I can't say why I held on to what was "supposed to be" for so long–it wasn't like me, but hell yeah, I did it. 
It's okay for you to say it out loud–the time comes when we are what we do. I am thinking of Gavin in this respect. This is not the same as being responsible for what we do, I don't think (I have to think about that one for a bit…:) ), but if we take responsibility out of the equation, then perhaps lines become clearer, decisions become easier.  I know that the parent/child situation is not the same as the my mother/me situation, I don't mean to imply that.  But when we finally understood how much "supposed to be" was really worth, and where responsibility really mattered, I think we were able to make better, more compassionate choices in the long run.  I hope so, anyway.  Regards, Leslie
 

lostandtired

@autiesmama thank you very much for sharing that. While the situations, as you said, are different, the principle is the same. It hurts, to watch the person to knew turn into someone so different.

I wish you the very very best. Thanks in your again. 🙂

Shloime Perrin

Hey – this is probably obvious, but I only appreciated this recently – once you can disassociate the guilt from your really needed and deserved break, it will make the break so much more effective, and give you a much better ability to cope afterwards too. I think many people beat themselves up for not having done enough for those they are responsible for, but even if it is true, once the break is necessary anyway, it should be maximized for all it's worth. Good luck!…..

lostandtired

@Shloime Perrin I know your right. It's a process for me I think. Thank you for your kind words. 🙂

MeaghanGood

I don't think you have anything to be ashamed of. Your feelings are totally understandable and, as you say, human. And IMHO, there are no bad thoughts, only bad actions. As one of the other commenters said, it's not like you sent Gavin off to prison or anything; he's having a good time. Gavin and the family are both benefiting from this separation.

lostandtired

@MeaghanGood he's having a great time this weekend. So your right, it's not like we sent him off to prison. 🙂

ChrisCrane

First,try to stop any self-talk that includes guilt,you did not send Gavin to a horrible place and he is probably having a good time, 2nd can you arrange these breaks for at regular times,it helps to look for the space when you can relax and he needs to earn the right to go there,it might help motivate to do better to control himself on the week he is going, You need to look far and wide for treatment for Gavin,he is a special case and that might mean moving etc,but I do believe residential care would be best for Gavin and don't let your guilt or fear stop him from getting the help he needs and the needs of your family to be addressed ,At this point everything and anything should be on the table  If you could find placement for Gavin and and a good enviroment for the other two,and Lizze medical needs ,I say go for it ,move,forget the house any thing ,and everything does not matter unless it serves to better the lives of all of you , By the way,we are kinda in the same space for being ready to chuck it all,My husband Chris,is out of work,Matt (our 21 autistic Non-verbal) is not happy in the city anymore and Mark our 17 verbal aspie  has been bullied in the neighborhood,,we have a house that we can't sell,and 11 NT that needs a change ,We have wondering what else we could do to serve our family better ,I don't care and houses and thngs I would love a little peace,we are just about  at the place to try anything  Last thing talk to parents about the  maze to go through,for Gavin  because sometimes I have heard that A kid has to be hospitalized  a certain  number of times before further treatment  Hang in there  Gloria
gG

lostandtired

@ChrisCrane thank you for sharing that. I do believe you're right, as the squeaky wheel gets the grease.

mdupree

Please don't feel guilty.  I have a 16 year old autistic son.  Although, he is high functioning and a lot of his behavior is now under control.  There was times when he was younger that I felt stressed not knowing how I could help him.  I just had to pray for patience and that unconditional love.  I do, however, know about how that feeling of the relief of stress when the misbehaving child leaves the home.  I went through that same feeling with my older son and his family living in our home.  I was so stressed that I at several points during a two year period ended up in the hospital from the stress.  I felt guilty from the fact that I was so glad when he was gone, and I dreaded when he was around.  But, I realized that I had to be strong and endure for the rest of my family.  I prayed and asked God for the strength to be there for me on a daily basis.  Stay strong and don't feel guilty.  Just remember the unconditional love that your Heavenly Father has for you when you stray from Him, and then in turn relate that self same love to your son.  My prayers to you and your family.  Have a blessed day!

lostandtired

@mdupree thank you very much for your support.

Mary Franzen Costell

It's brave of you to be so honest with your feelings to such a wide forum. I've read that you can't fill anyone else's cupboards if your own is bare. Try, as hard as it is, to view these Respites as a chance for everyone to regroup and deal better with your situation. Maybe Gavin relaxes when he's away too? I figure you are wondering about the future too though, and it has to be HARD to deal with the mixed feelings. It just sucks.

lostandtired

@Mary Franzen Costello well put. I wanted to share this because I don't want people to think that if they feel this way as well, that they're alone. Because they aren't 🙂

Mary Franzen Costell

It's brave of you to be so honest with your feelings to such a wide forum. I've read that you can't fill anyone else's cupboards if your own is bare. Try, as hard as it is, to view these. Reams as a chance for everyone to regroup and deal better with your situation. Maybe Gavin relaxes when he's away too? I figure you are wondering about the future too though, and it has to be HARD to deal with the mixed feelings. It just sucks.

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