Yayasan Peduli Kemanusiaan

Yayasan Peduli Kemanusiaan

Today I had the pleasure to spend the day at the Annika Linden Centre facilitating a seminar for my host agency YPK.

Today’s topic “Helping Siblings who have brothers or sisters with Special Needs” brought tears & intense thinking on the part of parents and teachers.

I was once again reminded that it is not only sad & overwhelming for a mother who is trying so very hard to understand & care for their child with special needs but it can again be sad & overwhelming to know that your normal child might be in need of some special support.

First, we discussed the possible feelings siblings could have (fear, embarrassment, isolation, guilt, worry & confusion) especially if they are not given information & asked to express how they are feeling about the situation.

We then spoke about how important it was to have a plan in mind & written out for those who may be taking care of the sibling when the parent is no longer able or has passed on.

On participant added how difficulty it can be for a Balinese family to realize that their son or daughter will never be able to take care of them, a tradition & expectation in Bali.

The plan would outline 1) Financial strategies, 2) Legal issues, 3) Medical needs, 4) Likes & fears 5) Interventions that work and 6) Friends& family members that can be of help.

We discussed the need to explain the type of disability to their normal children (autism, downs syndrome, cerebral palsy) and to ensure that this challenges is not something of which a brother or sister is likely to pass on or catch from the child.

I then offered the idea of putting on sibling workshops. I suggested that each center or centers together could offer a day each month where siblings are invited to have fun, exchange experience & even learn together.

The sibling workshops might have 6, 10 or 12 participants & last from 1 to 4 hours long. They could be co-run by an adult sibling &a teacher. We discussed the benefits of siblings meeting each other to see that they are not alone & to learn how other siblings handle the same challenges.

Teachers from the center thought it very possible to offer a sibling gathering & parents were encouraged to reach out & ask for one to happen.

During lunch time I was asked to meet with a family & talk about their 6 year old son diagnosed with Autism & Cerebral Palsy.

He loved my squeezing him & playing hand clapping. He gave me plenty of eye contact when I engaged in proprioceptive activities with him. He kept returning to me hoping I would engage & when I tickled him he laughed & laughed. He would just stand next to me & move his body closer. No words.

Nope, he didn’t seem to have any words but a few times made some babbling-like sounds & babbled right back & he looked straight at me. He liked jumping too. His home therapist was there & very interested in how she could learn to know what he wanted.

His mom, therapist & I discussed ways to use his jumping to count & express wants (5 jumps, 10 jumps, on, off, more)

We spoke about teaching him to dress himself but to first follow directions to obtain each clothing item, observing if he knew the names for each item.

I encouraged them to have him request more instead of them anticipating all his needs & wants. Wait for a gesture towards an item, a point or a look & then ask him to show you more often what he wants so it can be shaped into a better form of requesting (point) Teach him to shake his head yes or no when you ask him if this is what he wants.

Play with him I encouraged & teach him to imitate 1st large motor movements & then sounds you make. When he can imitate you have the beginnings of his ability to learn from you.

I asked if they had connected with an Occupational Therapist or Speech Therapist but was informed that no services were available for him & that a Speech Therapist only works on eating and his had no challenges in that area.

Lunched ended & I just encouraged them to send me additional questions via email

It was my hope to see the therapist once again before my time in Bali ended to help her think of ways to help this adorable little six year old.

Our 2nd session focused on how important it is to take care of ourselves so we can take care of those we love with special needs. I presented the wisdoms of Robin Sharma, Robert Schuller, a Mom of a special needs child & Adrianna Huffington.

I engaged them in the concepts of the apple barrel filled or emptied of apples & the idea that we are all like lamps, that in order to burn we need to be filled with oil. They smiled & I had each of them tell me something they would fill their apple barrels with (reading, sleeping, exercise, hope, positive attitude).

We talked about how we all lose our apples (stress, dealing with angry people, hearing negativity, a fight with a loved one etc.). It is neccessary to refill the barrel then.

We discussed the benefits of meditation & practiced breathing together. I had them close their eyes & breathe deeply then sending out a long deep sigh with every exhale. We did that several time.

I encouraged everyone to eat well, get enough sleep, find others who work in their field to discuss solutions, see the cup half-full & to Not BE SO Hard On THEMSELVES. I suggested that no one can do this alone & no one has all the answers.

Our day together ended with some questions they had on their minds & with their suggestions for topics for our next time together. They were Autism, Autism methods, Healthy eating & how to deal with the sexuality issues of their special needs population.

We closed our eyes a final time, took 3 deep breaths & let out 3 large sighs as we all exhaled together.

Karen Kaplan
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