Thursday, August 21, 2014


Today I left the house around 8am to head up to Portland. Dave came to watch Sebastian & Willow. He took Sebastian to basketball camp & picked him up. Judah's aide was here for him. She took Judah out for the day. They went to The Discovery Center. She said they went to the train room FOUR TIMES! I love how these aides will do stuff like that for him. I wouldn't even be able to with 2 other kids in tow. They stopped for French fries & went on to the park to play & have lunch. The aide lost her keys at the park. She had an extra key, so they weren't stuck there. Instead of making Judah spend all afternoon looking for her keys, she took him to Jamba Juice (his favorite - it was his birthday party theme last year, with a "4" candle in his smoothie!) and they had smoothies. It was a super-duper day for him. He give her a big, loud, "Bye!!!!!!" when she headed out. Her shift was done & she was going back to the park to look for her keys.

Dave & Gramma took the other 2 to Marco Polo for lunch. They went to the park as well. Dave said he saw Sebastian shoot 6 baskets when he came in at the end of basketball practice! That was only day 4 of playing basketball! Sebastian told me that they "scrimmaged". There's a word I haven't heard in a long time! I'm basically re-learning basketball terminology and trying to remember the rules of the game that I used to know forwards & backwards as a kid. It's kind of fun.

I spent the day in Portland at a SibShops workshop. This was a training of sorts for people who want to facilitate SibShops in their community. Tomorrow they will complete their training. Today was also open to people who weren't doing the training - people like parents, psychologists, teachers, grandparents, foster parents, social workers, advocates for autism, people who work for autism organizations.. all KINDS of people! It was a big crowd! I walked in 30 minutes late and saw someone in the crowd standing up, talking on a microphone. I grabbed a seat and soon learned that the mike was being passed from person to person, allowing everyone to share a bit about themselves & what they hoped to get out of the workshop. I shared that my son is starting to bring friends home & it's something that we need help with in terms of what to do & how to support him. I also shared that my kids are becoming incredibly aware of Judah's differences & shared a story about Willow - The other morning Willow said that Judah hit her baby in the eye. Judah said, "In the eye?" And Willow says, "Judah.. talk.. Judah''s talking!!" She's two. Everybody "awwww"ed at that story. She's 2 and she realizes that he is delayed. I didn't know that.

I was able to get the friends question answered pretty clearly when I spoke with one of the people that was on the sibling panel during the second part of the workshop. I picked the youngest one to talk to. Ages of people on the panel ranged from highschool to 60's. They were all older siblings to someone with special needs. And every single one of them had a really good job. One was a pediatric nuerologist at OHSU, another was an opera singer.. who sang in another language (can't remember what language), one was a highschool cheerleader in her senior year, I think one was a lawyer.. I can't remember all of the jobs. We were taught in the first part of the workshop that the older sibling is very often a perfectionist. He/she is responsible & mature at a young age. There's no question why. They all had heart-wrenching stories and talked about situations you couldn't imagine speaking about without breaking down - but they had gone through them so many times that it was just life to them, it was nothing new. The highschooler said it takes 3 people to hold her brother down to get him on a plane (he hates planes). Her neighbors have called the police on occasion - probably assuming the worst when it was really just "life" to her family. She told me she knew exactly what I was talking about when I told her about my oldest bringing friends over. Her advice was to tell the parents & also to encourage Sebastian to talk to his friend about it if he wanted to.

I got lots of my questions & thoughts out during the first half. When he asked if anyone had stories about their kid's sibling being embarrassed he said, "Anyone got any good stories about that?" I didn't think I did until I remembered the first day of Kindergarten this year. He went right to me when I raised my hand. I felt so unbelievably bad about that day, I wanted to erase it somehow & start it over for Sebastian & Judah. But when I told that story to a large group of people that could relate to it well in probably many different ways, I felt so much better. I didn't expect that. When I sat down to eat at lunch the 2 ladies I sat by remembered my stories. I felt like I was sitting with friends, but we were nowhere near friends - I didn't even know their names. But we talked easily and comfortably and had much in common, like good friends do. That's what SibShops is all about - getting the siblings of special needs people together, allowing them to see for themselves that they are not alone.  It gives them a place to share their stories & feel safe doing that. It gives them friends that can relate to one of the biggest pieces of their life... and that's crucial. SibTeen exists as well.

I wanted to post some notes that I took during the workshop as today's blog entry.. I didn't plan on writing all of the above!!! Notes below.

  • Your oldest normal kid existence gets harder. Our oldest often wants to be like everyone else.
  • Validate your kid's feelings - "I feel like that too.."
  • Give your kid space when he asks for it - he goes to his room or gets up early to have alone time.
  • Oldest may feel guilty because he is more typical and able than his special needs sib
  • Oldest may be angry that others have typical sibs
  • Oldest may feel guilt that he can't protect his special needs sib
  • Oldest may have guilt over not liking his special needs sib
  • Oldest may have frustration that he can't always communicate with his special needs sib
  • It makes me very concerned that our oldest's feels the need to have immediately forgiving behavior (early maturity) towards his special needs sib when typical kid would have anger. I'm afraid he is learning to hold his emotions & feelings in. I'm also concerned that this anger may derail in sister's direction instead or come out in other ways & situations.
  • I'm concerned that he may feel the need to be the adult. When I have him help out I feel guilty that I could be adding to that problem. However, learning to help out and to do new things is something that is also good for kids.. it's pretty normal. I think the star chart has helped to put a positive spin on things & maybe less of an "adult in training" feeling.
  • Oldest keeps feelings to himself - I'm afraid he does this quite a bit
  • Bash wants more one-on-one time with me. I need to schedule it to make sure it gets done consistently & often.
  • Oldest's problems aren't taken as seriously or cared for enough - attention goes to special needs sib (we have this problem too)
  • Oldest feels need to teach or parent their special needs sib. Our oldest wants to teach his brother how to read, etc. He announces it proudly.
  • When special needs sib is going to enter a situation or do something that the typical sib is very familiar with, be sure to ask the typical sib to share his thoughts, give him his light to shine.
  • Let oldest know that special needs sib likes to be treated as a typical kid.
  • Give special needs kid chances to make a difference - let him mop the floors, vacuum, etc.
  • Make sure oldest knows that he did not cause his sibling's diagnosis.
  • Realize that siblings of special needs kid are often jealous of all the attention special needs sib gets (aide).
  • Ask your service provider to spend time with the special needs siblings.
  • National Organization for Autism is a resource for books on autism for siblings
  • Share special needs sibling's future plans with other siblings. (they may be worried how their lives are going to be impacted in the future)
  • Siblings of special needs child believes that their home life is typical.. then they go to a friend's house.
  • "Sibling Survival Guide" - recommended book
  • Sibling Leadership Network
  • Typical kid is learning from parents what to think about special needs kid. They are learning how to act & treat special needs kid - all of this through watching what we are doing.
  • Woodbine House - has books for siblings
  • "Views From Our Shoes" - another recommended book (I think he wrote it)
  • Our oldest asks & says: When will therapy stop? Did you have therapy when you were a kid Mom? When will he learn to talk? Why isn't he talking.. but 3 year olds talk.. what's wrong? I'm going to teach him!!"
  • Teaching the "A" word to special needs siblings ultimately helps them make sense of everything. We've had this conversation with our oldest recently - hopefully helping him begin to put it all together.
  • I question if we are putting pressure on oldest to hide his feelings & be perfect. He often only tells us good news & will tell me when something bad happens in a way that says, "It's alright, no big deal." Is he saying - Don't worry about me.. you've got enough going on.? Then he has night time behavior that seems to be a desperate cry for attention. How do we help him balance his emotions?
  • Tell oldest that we have high expectations for EVERYONE in the family, not just him.
  • Relate to his isolation. (sibling of special needs kid)
  • Are we acting differently towards the siblings of our special needs kid because we are so stressed & busied over the challenges & hurdles autism brings into our life?
  • Benefits of having a special needs sibling - Free carousel rides, huge knowledge of autism, leadership skills, have pride, empathy, & maturity, learned responsibility, learn to help others, great patience, learn sacrifice, learn to tolerate more, less judgmental, more accepting, inspiring to others, crazy sense of humor, appreciation for things others typically take for granted.. namely our health.
  •  Make sure of special needs kid's siblings have personal future goals (many go into professions where they can help others)
  • Siblings can see their special needs sibs abilities while others are seeing the disabilities
  • Siblings often have loyalty to their special needs sib, defending them at times
  • Try to minimize typical sibling's concerns & optimize opportunities for him
  • Provide age-appropriate info (books for kids on autism)
  • Help your kids meet other kids who have special needs siblings.
  • "Sibling Slam Book", "Thicker than Water" - more books
  • Active daily listening is the best communication we can have with our typical kids.
  • "How to Talk So Kids Will Listen & Listen So Kids Will Talk" - book
  • Give typical kids one-on-one special time - utilize respite (especially for events you shouldn't miss)
  • Does my oldest resent me for wanting time to myself? I'm thinking he probably wants that to be his time.
  • "Sisterhood with a Twist of Autism", "Riding With Siblings", "Special Siblings"
  • Reassure your kids - make plans for the future!
  • Joe Pinter - pediatric neurologist at OHSU - was on the sibling panel
  • Barbara Walters is a sib!
  • Make time to do what kids really want to do - beach, Enchanted Forest, etc.
  • Realize that the siblings of special needs kid see him as a lifelong commitment. These siblings will know him much longer than we will.
  • Special needs kid teaches siblings to think outside of the box.
  • Wonder if oldest doesn't know that letting out emotions is okay, or just doesn't understand what he is feeling. When J left on his first outing without us S said, "I thought I was going to have a tear. I don't know why." He looked at me, fighting back tears when he told me that.
  • Our oldest often doesn't boast his achievements.
  • Involve oldest in special need sibling's future plans - may help them relax & feel more okay about the future
  • S told me that he got hit with the basketball like 3 times during practice the other day. He wasn't upset or mad about it, just telling me like it was just something that happened that day, no big deal.
  • Magnetic Renosance (sp?) Therapy - MRT - not clear on this
  • Facebook groups: Sibnet, Sibteen
  • How can S teach J without being a parent?

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