Archives for posts with tag: Lost and tired

“Care of the Caregiver… YOU!” ~Shane B. Kulman

I remember the first time I heard this. How clear and “right” it sounded.  As the phrase unfolded in my head, I realized that I was a caregiver, and that working in a classroom 5 days a week, 8-3:30 and then coming home to eat a slice of pizza and collapse was not going to work for me anymore. That was NOT caring about the caregiver, and I was caregiving for 25 students and a wacky assistant that year.  No more…

I’ve graduated and will occasionally take a several week or month vacation during the school year, is this extreme caregiving for myself?  I think, no.  Some say extreme, I bet some say spoiled…  I now understand the importance of bookends. When I set out to work, I am aware that before and after I must include time where I do something for myself.  It may be a simple cup of tea, or a massage/spa visit.

I believe everyone is a caregiver in some aspect. Parents, Grandparents, Aunties and Uncles, babysitters, teachers, therapists, Nurses, Doctors, dog owners… you get the idea.

The parents I work with that have children with special needs, are constantly caregiving. There have been very few who make the time to withdraw from caring about others and take care of their Self.  So many parents pick food from their children’s plates, or eat standing up, don’t get dressed or spend every last penny on their child. After a while the caregiving well, goes dry. Parents often feel drained, wasted of energy and limited in   options. When I suggest a yoga class, a writing class, or to join in to any group activity that does not revolve around parenting, they look at me like I’m a dreamer, like I’m out of touch with reality, and then I see the guilt forming, “WHAT!?!? spend time on myself?!!?!? When my child is so far behind?”  I even suggested to a Mom to go out to dinner with Dad with a dress on, and I would stay with the children, she laughed at me and said we talk and eat when the kids go to school. Hmmmm, is this the same as wearing a dress at a restaurant?  I think not.

Children learn from watching, this has been researched and proven.  If all the young girls are watching their Mothers caregive and serve constantly, how will they learn to be independent and self expansive?  Special needs children, including non-verbal children see and feel what is going on around them. I see the neediest children become ultra demanding when they are in need of something. What happens after their demand, that may result in a temper tantrum/meltdown?  A Parent is running to serve them. What is the valuable lesson here? Yup, the bigger the meltdown and demand, the faster a parent runs.

Children with or without special needs, even pets, learn how to rule through behavior and reactions. I believe there is always time to be made for caring for the caregiver. Even if its a bath, or journaling time. I would say shopping, but you know who gets shopped for… everyone else.

Dearest friends – No matter who you are caring for. You can serve them on a higher level, if you take time to serve yourself. Your health and those you love will love you for it.

Namaste and love yourself,

Shane

How YOU could help a Special Needs Parent.

As the rates of #Autism continues to skyrocket, the likely hood of you knowing someone that is a special needs parent is growing as well. Maybe you already know someone with a special needs child. Perhaps, a friend or family member.In this article, I hope to give you some simple ways that you can help the special needs parent in your life. Knowing what to say or do can be daunting for someone that doesn’t have experience with special needs parenting. This is probably where many people, with the best of intentions, get scared off. Seeing what a special needs parent goes through can be a very overwhelming experience for anyone.

It may even seem so dire that one might feel that they have nothing to offer, that could possible be of any benefit. I hope to change that by sharing a few very simple, very basic ideas, that can provide much needed relief to a special needs parent and let them know that they aren’t alone.

So, you have a friend or loved one that is a special needs parent. Do you want to offer help or support but don’t know what you could possibly do? First of all, let me thank you for showing compassion, concern and love for the special needs parent in your life. Honestly, to a special needs parent, just knowing that someone cares is really important. In fact, it’s so important, that I don’t think it can be overstated.

Taken from LOST AND TIRED, ROB GORSKI

 

If you have ever wanted to offer help to a special needs parent but maybe don’t know how, this article is for you. Perhaps their situation is so difficult, you don’t know how you could possibly help. There are some things you can do to help even if they don’t seem like much.

One of the toughest parts of being a special needs parent is the feeling of isolation.  Their child requires so much of their time, energy and undivided attention that they often times have little or no adult contact (aside from doctors and therapists). You could make plans to stop by for a visit. Many special needs parents will tell you that they would love to just talk to another adult. Please remember to call first as a surprise visit could just add to the stress by destabilizing or overstimulating their child.

Sometimes, by the end of the day, exhaustion is such that the thought of making dinner is simply to much. Perhaps you could also offer to bring dinner over so they have one less thing to worry about. It would be a very nice gesture and could really help take some of the load off their shoulders.Remember that their child may have special dietary or sensory needs so it would be a good idea to do some research by calling and asking what would be a good meal to prepare for them.

Things as simple as sending a card, email or text message, just to let them know you’re thinking about them could help them to find the strength to keep moving on a really bad day.

If you wanted, you could send them a gift card for groceries or maybe their favorite take-out. There is often times a tremendous financial burden associated with special needs parenting and maybe a gift card will help them provide groceries for their family, if things are tight that week.Think about making arrangements to go over and spend some time with their child (if that’s something that would work). Educating yourself about Autism of whatever else the parent is dealing with is important for something like this. Not only will educating yourself help you relate to their child, but knowing that you took the time to learn about their child’s condition would mean a great deal to any special needs parent.

As their child likely requires all their time and energy, every single day, things around the house and yard tend to take a back burner. You could help with lawn care or repairs to the house. Wash a sink load of dishes or fold the laundry.

The list of possibilities is endless really.

The most critical thing you will be doing, is showing them that they are not alone. Sometimes just knowing that their are people who love and support you, standing in your corner, can mean more then you can possibly imagine.

Please remember that you don’t have to understand anything about Autism in order to show love, compassion and support to those touched by it.

 http://lostandtired.com/2011/04/22/how-you-could-help-a-special-needs-parent/

touched on this a little bit yesterday.  I think that, in general,  special needs parents, myself included, carry around a great deal of guilt.

More often than not,  the guilt is not warranted.  That doesn’t make it any easier to cope with though.

I carry around so much guilt for things that I know I had no control over.  Rationally,  I understand that but it doesn’t make the guilt go away.

I’ll give you an example.

I hear all the time from people how I’m doing such an amazing job and what a wonderful father I am.  However,  the truth is that I don’t see that.

I tend to focus more on what I do wrong instead of what I do right. I compare my short comings to other people’s strengths. Guess what.  I lose everything single time.

I would guess that I’m not the only one out there that does this.

I was thinking that we could all share what we feel guilty about.  Perhaps we can learn something and maybe,  just maybe,  learn to move past some of this guilt. Maybe we can gain some perspective by listening to each others reasons for feeling guilty.

I’ll go first.

I feel guilty because……..I can’t take away my wife’s constant pain.

I feel guilty because………we have decided that it’s best that we send away one of our children for residential placement. Even though it’s the right thing to do, I feel like a complete failure and that I have let him down.

I feel guilty because………it took so long for me to come to terms with having to send Gavin to residential treatment.  In that time,  my wife and our other kids have paid a very high price.

I feel guilty because……….I haven’t moved my family out of this neighborhood yet.  No one feels safe here,  including myself.

I could go on and on.

I imagine that some of you are sitting there thinking that I have nothing to feel guilty about. Am I right?

Logically I understand that,  however,  as a parent and husband,  I don’t always think logically.  Sometimes I expect myself to work miracles and when I can’t,  we’ll….I can’t forgive myself.

Having said that,  I am asking you to bare your soul a little bit and answer the following question.

I feel guilty because……..

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 hate me.

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Read more: I feel guilty because……. » Lost and Tired http://lostandtired.com/2012/08/27/i-feel-guilty-because/#ixzz25tXJSO57
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