On the Road With Autism

My journey of discovery. I welcome your comments!



In the previous two blogs we discussed how siblings are feeling when they have a brother or sister with a special need. We began to explore ideas for supporting sibs. Well,

HOW ABOUT SIBSHOPS?

Sibling’s anxieties, fears and doubts can be addressed through group work.

In some communities a group meeting is formed for siblings to come together. These are called Sib shops

The meeting is an opportunity for sibs to come together to receive peer support and education within a fun recreational manner

One agency or more could come together to offer this group

A group could be run by a social worker, teacher, nurse, psychologist or an adult sibling of a person with special needs

Groups are NOT therapy but often have a therapeutic effect.

Facilitators of the group keep an eye on the individuals in the group and see if any might need additional services

Groups can be as small or as large as the facilitators feel is positive. Some say a group of 12 with two facilitators works well.

Each community determines what day, or time or space to be used. Some groups can be as short as 1.5 hours or as long as 4 hours. Groups can be weekly, monthly or quarterly Most are bi-monthly.

Groups can be developed according to ages (5 to 7, 8 to 12, 13 to 18, 19 to 25 other)

Games, discussions, arts & crafts and speakers are activities used to connect participants

Sometimes lunch or snacks are served & they learn about special needs

They meet other siblings in a relaxed recreational setting

They discuss common concerns and positive experiences

They learn how to handle common experiences they encounter having a sib with special needs

Some SIBSHOP DISCUSSIONS ARE:

How did you learn about your sib’s disability? How was it explained to you?

Is your life different from other kids? How?

What are the good parts of having a brother/sister who has special needs?

What are the not so good parts?

What do you think will happen when you and your brother/sister grows up?

Are friends and classmates ever a problem? What do you do?

What do you think parents should do for brothers/sisters of kids with special needs?

Is being a brother or sister of a special needs person different than being a brother or sister of a typical child?

Other TOPICS For Discussions can be: ATTENTION DEFICIT DISORDER, ANGELMAN SYNDROME, AUTISM, CEREBRAL PALSY DOWN SYNDROME, EPILEPSY & SEZIURES, HYDROCEPHALUS, TOURETTE SYNDROME.   Understanding the disability helps bring acceptance.

Sibs Lives Can Be Happier When We Help them acquire knowledge and address their questions

Parents Lives Can Be Happier When They:

Learn how to support their child with special needs and their typical developing children

When they take care of themselves as well (Take time for themselves, Eat Well & Seep Well)

Find other parents with similar challenges and comfort each other

Can learn to ask for help from professionals

When they are allowed to express their feelings

When we offer Sib shops we help everyone.....

Perhaps you can design and offer a sib shop in your community.

BUT Siblings MAY ALSO DEVELOP POSITIVE FEELINGS ABOUT THEMSELVES

I am Mature  (My parents trust me to help)

I am Independent  (I can learn to problem solve)

I am Patient (People learn at different rates)

I am Understanding  (My brother/sister is still a person with feeli

I am Caring (I will find ways to help others in the world)

Some siblings learn to take time for little things in their lives and when faced with challenges know they can deal with them

Sibs often learn to Never Give UP

To take time for themselves

To be Kind and Encouraging

To laugh more

WHAT CAN BE DONE TO HELP SIBLINGS BE HEALTHY & ADJUSTED

Parents need to reach out for help from professionals (teachers, medical, therapeutic community, family, friends)

Siblings need to understand the challenges of their brother or sister. What is Cerebral Palsy, Downs Syndrome, Autism, Intellectual Disability, blindness, Deafness, Attention Deficit Disorder? Do this early, do it often and do it in age appropriate language (simple at first to more details later)

Siblings need to be assured that the challenges are NOT contagious like a cold or flu

They need to know that there are many, many children born with challenges in their communities and in the world

They need to know that their brother or sister will also have some abilities and must be encouraged in these areas

Parents need to be careful not to treat brothers and sisters as caretakers, but as children

Do not give them responsibilities beyond their maturity!

Encourage children to ask questions and involve them in discussions. Value their feelings and opinions

Siblings will need to know how to play with their brother/sister. Some children with challenges may not show an interest in playing. This is hard on the sibling. Help them learn to play with their sibling.

They are not going to go through the normal sibling developmental milestones. Through their interactions sibs learn about developing relationships. So if they can’t with their sib, there can be challenges. But if they learn to play with others this will help.

Adult Siblings will benefit from seeing a plan made by the parents about the future of their sibling. This could be written out and updated periodically with the following:

Who are my brother/sister’s friends, family members and neighbors that can help?

Who are the doctors and educators who can help me?

Who are the doctors and educators who can help me?

What are the interests of my brother or sister with a disability?

What financial planning has been done (How will I take care of my sister/brother)?

What are the laws around taking care of my sibling in my own community?

What is the medical history (medications, treatments) I need to know?

When a plan is put in place the sibling can then experience less stress.

 

 

 

 

 

 

 

 

 

 

 

Siblings Have Feelings Too 2015 Each time I spend time helping in Indonesia I gain remarkable insight. This time was no different. One of my take homes this time was never take for granted the vast number of resources, understanding & access to information that families have in the United States. During my workshop on Bali, “Siblings Have Feelings Too” the tears of one mother will always be a reminder to deliver information caringly. In the USA we take for granted that families know they will have challenges helping their son or daughter with special needs & that they also know they may need to find ways to support the typical siblings of their special needs brother or sister in the family. Ibu (mother) Panji, a mother in Bali, who tries everything she can to support her son with autism, came to realize that she also may need to find support for her other children who might have challenges due to the care of their brother or sister.   A double sadness comes to mother Panji while attending my workshop. Her tears showed me that.

In the next couple of blogs I hope to share some meaningful information to help families and professionals working with families.

Why should parents be concerned about sibling’s feelings?

Siblings can develop feelings of jealousy, resentment, isolation, anxiety or fear because they have a brother or sister with a special needs and then entire family is affected

When parents are also worried about siblings they are more likely to feel stressed

When siblings’ feelings about their special needs brother or sister are not addressed they are more likely to develop anxieties, frustrations and guilt

WHAT MIGHT SIBLINGS BE THINKING?

Will I get to spend time alone with my mother or father?

Do my parents still care about me?

How will I explain my brother or sister to my friends?

Why doesn’t my brother/sister have to do chores and all the things I have to?

Why does my brother/sister act that way?

I am embarrassed when people stare at my sister/brother and my family

How am I going to play with my brother or sister?

It seems my brother/sister gets so much more attention

Will I catch what my brother or sister has?

SIBLINGS MAY FEEL   (Confused, Lonely, Jealous, Guilty, Fearful, Responsible, Sad, Angry, Frustrated)

Stress from embarrassment

Stress from not being able to engage with their brother or sister

Stress from aggression from their sibling

Stress by their own perceived future responsibilities of taking care of their sibling

They can feel ignored or uninformed & so left out

They may feel left alone due to their sib’s medical treatments

They can feel resentment when family plans have to change because of sibling behaviors

They may feel they might get what their brother/sister has

They may feel fear wondering if their sibling is going to die

They might feel jealous due to all the extra time their sibling requires

They could feel guilty & think they did something to cause their sibling’s problems

They could feel guilty because they complain about their brother or sister and they know they are the one without the disability

They will feel sad because the future is so uncertain

They may feel embarrassed of their sibling’s looks, behaviors or inability to communicate

They will feel confused because they lack the information about the disability

           IT IS SO, SO IMPORTANT FOR PARENTS TO ASK THEIR CHILDREN HOW THEY ARE FEELING OVER AND OVER AGAIN, THROUGH All Steps in THEIR GROWING UP SO FEELINGS CAN EB IDENTIFIED AND SOLUTIONS FOUND

More To Come!