Archives for posts with tag: special needs parents

“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

Ciao!

In college, I was given this book, The Way of the Peaceful Warrior by Dan Millman.  It was my first experience hearing the term “let it go.”

The term has become so popular in every group of people I meet, and has become wonderfully  appropriate for the parents I work with who struggle with their child having a  label/disability.   While I don’t particularly love labels at all, if it’s whats required to get a child the services they need or the classroom that will serve them better, so be it.  Since the child is not aware of the label, why make them aware?  In considering the term “special” education, I think everyone deserves this special-ness.  Don’t you?!

In order for us to understand how to let a child’s disability go, or what I actually mean is – go back to school when everyone was put in a category, pretty, popular, ugly, smart, lonely, athlete etc. When you are put into the “real world” no one tells us- “ok now you can be yourself, change groups if you want, be a part of many groups, hang out alone’  After finishing with organized education, many people follow the crowd. The lucky ones realize they can do what now pleases them!  Then there are the people that get stuck in situations that don’t serve them best.  Not having the place to be “popular and pretty” anymore makes them feel lost.  On the flip side the ones that were “nerdy and unpopular” may begin to thrive, with finding like-minded people.  To realize no one is judging , and no one cares…  By letting these given titles go, the world and life is so much fun!  It allows room to grow to change!

As a therapist working with parents of special needs children I see many parents depressed and anxious about their child.  They can only focus on the future and of the negative.  Will my child ever make friends?  Will he be potty trained?  Will he ever say “I love you” or give a hug?  When I begin to work with a child, I come and play with a child, not an Autistic child, or a Down syndrome child, just a kid who intrinsically wants to be comfortable and learn.

Parents are surprised when I bring out regular toys and sensory items to use with their child. As a therapist they imagine their child’s session will be clinical and different than a “normal” child.  This is the beginning of the impression they will feel, and they will begin to let the label given to their child go…

Who cares if a child has Autism?  If a child can be happy and comfortable and express their needs, it is the first  steps headed in direction of success. If a parent is doing all they can for their child, then it’s all good.  When their child is not in school or having a therapy session, all a parent needs to do is play with their child.   Join the child’s world, do exactly what the child is doing. Let go of what a child is supposed to be doing.  By doing exactly what they are doing, it’s showing them you respect them. Do this every day for 20 minutes. Do not place expectations on the child, no goals.  This is time for loving the child exactly where they are at.

This is the best therapy of all. No therapist or  fancy physician can be with a child and get the same results as a parent can. Lets call it LOVE THERAPY.  You don’t even need to use words, if a child is non-verbal, talking may be overstimulating which can cause repetitive behaviors.  Keep it simple:

 

  • Set aside 20 min(or less) with your child
  • Approach your child
  • Smile
  • Join and copy them
  • Have no distractions, no phone, no computer etc.
  • Let go of your expectations

I know it will help other parents if you have a story to share about “letting go.” Let this be a space of sharing…

Have a wonderful holiday. Practice LOVE THERAPY with your child every day during their break. Write down a short paragraph about the wonderful changes you witness.

Be love,

Shane

Aloha on this beautiful NYC day!

Attached you will find several workshops that you should look in to and attend.

Besides just posting these, I would like to discuss why it’s important  to attend any conferences as a parent.  I pass on all the information to the families I work with and I can say about 90% of the time, they do not attend.  Besides the obvious reasons of great information being passed on here are some  other reasons to attend workshops/talks and conferences.

  • Inspiration to work with your child
  • New parent friends, who feel like you do/networking
  • Learn positive parenting strategies
  • Brainstorm old ideas into new ones
  • Freebies
  • Recharging with time away from home
  • Bonding with your mate
  • Bring a family member/friend=educate them about your child

A well known question that comes up is “who watches my child while I’m at a meeting?”  This is a great opportunity to introduce your child to a family member that is up for the challenge.  I recommend as many trials as your child needs to stay with another person.  Depending on the development and behavior of your child, begin slow.  Leave the house with the beloved family member or trusted friend for 5 minutes, go mail a letter, get something from the car etc. Upon your return tell praise your child.  By adding more and more time away from home, you are preparing your child towards independence.

It is an important lesson your child learn that Mom and Dad have time away, this will alleviate any spoiled child from always getting what they want, special needs and typical alike.  As I always say regardless of physical, developmental or mental disabilities, a child is always a child first.

https://docs.google.com/viewer?a=v&pid=gmail&attid=0.1&thid=12816651a1484495&mt=application%2Fpdf&url=https%3A%2F%2Fmail.google.com%2Fmail%2F%3Fui%3D2%26ik%3D2ad43f4bde%26view%3Datt%26th%3D12816651a1484495%26attid%3D0.1%26disp%3Dattd%26zw&sig=AHIEtbSI4FNBC5iWDIPUTNIxNL8ZjGWuNg&pli=1

Your child has an IEP, Now what? http://www.facebook.com/#!/event.php?eid=115351888492473

Sensory Integration Talk http://www.facebook.com/#!/event.php?eid=115212021840232

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