Tuesday, March 22, 2016

spring break 2016 -- with a little side-note thoughts on how much to push a child with special needs

Sorry in advance that this is long.  I should do a whole separate post about Lucy and her first try skiing...and probably other stuff in this post too, but I'm putting it all here so I can find it easy when I want to reminisce about this week.

So buckle on in if you care to hear about the adventures of spring break!

We spent spring break in snowy Utah this year.
When we've skied during spring break before it's usually sunny and slushy, but not this time.  Utah got some serious new snow that was so incredibly beautiful:
And SO soft to ski on.  I haven't skied on powder like that for a long time...maybe never.

But let's back up because we got to hang with my parents the first day we were there.  They were headed to Germany to give a speech the next day so we had to hug them up while we could!

My mother, true to her best-hostess-in-the-world form, whipped up an amazing brunch for us.

My Dad, due to his most-involved/fun-grandfather-tendencies made the girls' eyes sparkle.

We went to church and cruised by the house we grew up in nearby:
We are kind of a nostalgic family so boy oh boy that sure spilled a lot of memories into my mind.

That night Dave took the girls to meet up with his family and I attended my parent's "Inklings" group with them.  They get together once a month with a group of super bright and interesting people and discuss ideas about whatever is on the docket for that night.  Last time I went it was about poetry and I adored it so I was excited to go again.  This time around it was about C.S. Lewis and his book "The Problem of Pain ."  I haven't read that one so I LOVED listening in on the discussion and being so inspired by C.S. Lewis and also how the gospel is intertwined into our discussion and his words.

This is the only picture I got...nice one right?
But I want to remember that night.

Our friends also sent me this one:
This woman and her husband were our good friends when we lived in England when I was a freshman in high school.  I babysat for them overnight when they had one of their babies and we all felt so bonded to them.  It's weird how those bonds can last so well over the years...they are such great people. So grateful they live in the states now and we get to catch up with them every now and again.

After that little chapter of spring break it was off to hang with Dave's family as per tradition.

We were all set to ski on Monday, but the weather reports called for a pretty serious storm warning with high winds so we opted for something indoors instead.

Now, I'm a little funny about some things (ok, a lot of things), but my idea of fun doesn't normally link to being in a dark game center all day.  But I must admit this day was pretty fun at a place called Fat Cats in Ogden.

I guess most things we do with Dave's family turn out to be pretty dang fun since everyone is kind of competitive and they just make it all pretty grand.

We played "Deal or No Deal" a bunch:
Did the bumper cars:
Lucked out to win a LOT of tickets:

...which turned into some serious time contemplating about what little trinkets to trade them all in for.

We bowled:



This video shows how excited these kids were about the whole bowling dealio:

I must admit I was kind of excited too because I beat Dave in two rounds.

Which equals twenty minutes of backrub for me.

So that made me pretty happy.

I had to take a picture of my score because hey, a 131 might not be too great for most people but it's picture-taking worthy for me :)

All the while it was snowing pretty well outside.

These desert kids thought that was pretty cool.



We hung with cousins all night at Dave's sister Julie's house.  I love nights like that.  Love those cousins (and sisters and brothers-in-law) with all my heart.

The next day was ski day.

We were still a little worried about putting Lucy in classes so I hung back with her the first part of the day.  We hung with my sister in Ogden and headed up to the slopes to ski with everyone (Saren's kids included) in the afternoon.  We borrowed some skis and Dave took Lucy to try out skiing on the bunny hill.

As you can see, she was over-the-moon excited about that prospect on the agenda.
She requested a picture with me too, which I thought was sweet ;)
This is her "excited face" with the cousins:
That excitement apparently faded pretty quick when she realized how slippery the snow was mixed with her skis and no control...

But I didn't know that because I took Dave's place to join the big kids on the slopes.
It was incredibly gorgeous up there.
Huge snowflakes falling all around.



I told Dave my only problem with skiing (aside from putting on ski boots:) is that I can hardly handle not having my big camera strapped around my neck.  When I see that gorgeous-ness it's so hard for me not to try to capture it.  But my little iPhone did the trick for a few and I tried to leave it in my pocket as much as humanly possible.

Couldn't resist capturing these cute cousins from both sides of the family in all that beauty:
My sister Saren stayed in the lodge to get some work in and got this shot one time as we came down:
My brother-in-law got this one before we got there:

Our little niece Macie did pretty great...
...but Lucy was pretty content to sit in the lodge with those who weren't skiing.
I missed my chance to get a picture of the whole group together but here are a couple stragglers:



We headed to my sister's house that night for pizza and games.
...and a little cookie dough at the end ;)
With families so big it is so great to get some one-on-one family time.  Love this great family!

We did some serious prep to get Lucy hyped up for her first REAL ski lessons the next day.  She was pretty excited until we got to the slopes.

Then she started whining like there was no tomorrow.

Luckily there was a darling girl in her class who said, "do you want to be ski buddies?"

Honestly, I'm always grateful for kindness.  But kindness is so much more poignant when it happens so often with a daughter with special needs.  Just that little random sentence "do you want to be ski buddies?" filled my heart so full.  What a little sweetie that girl was.
Just one little sentence of kindness can sure switch up an attitude.

It was a gorgeous morning.
...with PERFECT snow.

Some day I will write a whole post about how it is to have a child you don't know how far to push.  Ok, I guess there's a little of that with EVERY child.  How much do we push as parents?  How much do we let them find their own paths?  I believe there has to be a pretty good balance that is so very unique to every child, and every parent/child combination.  But it's an extra interesting balance when you have a child with very different abilities and needs than your average child.

Yes, I could write a book about this and all the thoughts flowing through my head about it lately, but for today here are the basics:

Lucy is different.  Her muscles don't work as well as other kids' do.  She can't see very well.  She has issues that are difficult to explain.

As parents, it's so hard to figure out how much to push and how much to sit back and let her be.

But what we push on brings her SO much confidence.

Take riding a bike for instance.

That's a tough thing for a BBS kid to do.  But the fact that she can do it is pretty momentous for her confidence.  She glows that she worked so dang hard on that (with a LOT of help from her Dad on the side), and accomplished her goal.  She is getting so much better it is so fun to watch.

There are still a whole heck of a lot of things she can't do...tying her shoes, brushing her hair, buttoning and blowing out candles to name a few.  But she CAN do them if we really, really work with her.  Everything just takes time.  And there's always that question lingering in our minds trying to figure out what's most important.

So, every year skiing has been one of those things we didn't want to push overly too much because we weren't sure it was time.

But this year we figured if the whole family is skiing, at some point we really do want her to learn.

So, as we kind of expected, Lucy didn't do well in her morning ski class.  The teacher basically explained what we already knew:  low muscle tone, lack of coordination, etc.  He had a big class so he couldn't help her much.

Heart sinks.  Does she need a "special needs" teacher?  Is skiing just not her thing?  I know it's not a lot of kids "thing" whether they have a genetic syndrome or not.

Lucy did NOT want to do the afternoon class.

But after a little lunch:
...and some pretty big pep-talks, she was ready to try it again.

This time there happened to be no other kids in her class.  No one showed up.  We had put her in a group class because we figured the peer pressure would be good for her, but the individual help ended up being pretty sweet.

Her teacher, the sweetest girl named Rachel, seemed pretty ready-for-the-task so I headed off leaving her in good hands.

As the rest of us skied I kept wondering how she was doing.  Dave and I took a little break and found a spot we could watch her out the window.

And do you know what?

That girl skied!!!

Sure, it was just a gentle slope, not even a hill.

Sure, her teacher did tell us she had to remind Lucy at the beginning that "nine-year-olds don't throw tantrums."

But she did it!  She took the first step!  She "skied" down that little slope quite a few times.

And her face was beaming with happiness about it.

Who knows at this point if we'll decide that one little "push" on skiing is enough, or if she'll be ready to try again next year, but I'll tell you what, that little girl glowing with pride sure made me glad we pushed.  At least for this year.
...And I could have just hugged Rachel if I didn't think she would be super weirded out :)

Doing new things is such an important part of life!  Just so hard to find the balance of what "new things" are right for this girl and what's ok to let go.

I guess the bottom line is that every child is just so incredibly unique, syndrome, special needs, or not.  And every parent is so unique too.  So it's all just a big game of seeking guidance (from others and especially from Above) and communication and going with your gut.  And learning from the mistakes you make along the way.

Lots to think about.

Cousins...
Brothers:
Cousins:

Our family, FINALLY with Lucy right along with us but now missing Max.
Gosh dang it!

At least we got a really great letter from him that morning and got to read it on the way to the slopes.

So we kind of felt like he was with us as we chuckled at his funny stories all day as we weaved through the gorgeous snow.

There is this painting we always see in downtown Salt Lake:
My sister took me to the restaurant it depicts last time I was in town, so we took the kids this time.

It was much more fancy for dinner than for lunch so we worked hard on our manners...
...and expanding our taste-buds a bit.

The next morning I met up with some of my best high school girlfriends for breakfast.  
Oh how I love those girls.  We just need more time to catch up!  We keep trying to figure out a time for a weekend get-away but I think we're all in such busy phases we'll just have to be happy with breakfasts or lunches here and there with as many as can come for now.

We shopped downtown a little bit:
Keepin' it real that having four girls trying to get me to go all different directions at the same time is a little daunting.

Oh boy!

Dave "conveniently" needed to run on a quick errand to find something we need to send Max while we shopped.

Then we headed to see Zootopia.
(Dave insisted on taking the picture rather than being in it.)

We cruised by my old stomping grounds on the way to send Max a package:
Oh yeah.

I love having a high school my kids are excited to visit ;)

Sure, it's been remodeled since I went there, but the fact that High School Musical was filmed there makes it kind of cool.  It's my claim to fame :)

The same leopard that was in our front hall is still there.
(It isn't really "wildcats")

Oh man, SO many memories.

The girls wanted to see the cafeteria quick:
Yeah, pretty exciting.


I snapped a picture of a couple of the letters the girls wrote to Max before we stuck them in his package.  Loved this one from Lu:

I loved Claire's too but I'm going to wait to ask her permission before I post.  I'll add it this afternoon if she's ok with that, it was SO sweet.

Here's her picture though:

We spent our last night with Dave's cousin and her family, including a cute niece down there on the left:
Dinner and games with more cousins:
 ...and an apparently very serious discussion about prom dresses.  Ha!

Lucy sure loves her "aunt" Heather.

After that it was time to pack up after a great week.

Dave headed home with the three younger girls while Elle and I headed to check out San Diego State for their "Explore" weekend I'll try to write about tomorrow.

Phew, that was a lot of stuff.  Congrats if you made it through!

32 comments:

  1. Question from a mom with her own special needs kid - how much "advance party" work do you do to try and smooth over the bumps you know are coming? I don't want to be the involved-to-fault parent and I don't want to announce my daughter's special needs everywhere I go. In fact, sometimes I feel like maybe I'm holding back too much and should intervene more. Last weekend my seven year old, who is legally blind without her glasses and has mild aspergers, participated in a local cello festival/workshop. She had received the ensemble music in advance and practiced her little heart out. I dropped her off in the AM and when I came back to being her lunch she was having the most wonderful time. I was thrilled. I sat out in the hall as they began their ensemble rehearsal and she was happily playing away at the melody. Another, well-meaning mom who was helping her own young student, suggested to my daughter that she not play the melody but play one of the the other parts since her own child was struggling. She handed my daughter the sheet music (which was handwritten and too small for her to read) and insisted repeatedly that she play it. I did step in and point out that she couldn't see well enough to sight read but the damage was done. She shut down, sat there and sobbed silently and finally had to leave (which turned into full-blown hyperventilation and a whole weekend of sadness). Have you had experiences like this with Lucy and how have you adapted going forward? My daughtwr's spirit was crushed and I'm not sure which one of us she's more tears over it.

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    1. Oh no! I`m so sorry for your daughter! Poor thing. Was the other mother even allowed to do that? Wasn`t there a teacher who was responsible?

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    2. There were parents trying to help with the younger group. I just don't know if going in before hand and saying "my daughter can't see well and struggles with routine changes" is always the best move.

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    3. This makes my heart ache. I can just feel your ache and your daughter's too. I'm so sorry. I'm sure that other mother meant no harm, just didn't know the situation but oh it's just like a dagger when you see your child trying so hard and all the efforts go for naught. I wish I knew the answer to your question. I usually don't say a lot about what Lucy's needs are because I don't want to set her up to fail. She has accomplished things I never thought she could and simply because people have expected her to keep up with her peers and haven't singled her out to not be able to do it. But I also never want her to be in a situation where more explanation of what she is going through is needed. It's such a tough balance! All I can say is that I feel your pain and I hope you have both recovered. Unfortunately this is probably the kind of thing that will happen again and again for both of our daughters (and really to all kids who are willing to put themselves out there and try things that challenge them). Hopefully they will learn to learn and grow from it and let the tough stuff make them stronger. And hopefully we can help them (and ourselves) see the silver linings.

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  2. Last year we pushed, actually tricked, our 9 yr old with low muscle tone into a ski class. He liked it enough to keep going and last week (after a lot of skiing this year) announced that skiing is his 2nd favorite thing in life - coming in ahead of college football (that he's more than obsessed with). Looking back we laugh at our long drawn out discussions of how we were going to get him on the mountain and if we should even try. The when to push and when to just be okay is a really hard thing to figure out and I'd love to read your thoughts on it!

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  3. Congrats to Lucy on her first time skiing!! I remember my first time...but every year I go, I get butterflies in my stomach! It's such an unnatural thing to move that fast on slippery snow! :)

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  4. I could be a little sensitive. Why is needing a "special Ed" teacher for skiing or anything else so heartbreaking? Why is determining and taking advantage of any accommodation a problem? She doesn't have to do the same things as the other four and she doesn't have to do them the same way. You can live a full life and not dive or ski. Especially when she wasn't asking to do these things herself. She is the one accomodating everyone. She is writing for seeing people. She is reading the books seeing people wrote for seeing people to read. I realize what is posted is just moments in life. You haven't posted pictures of her reading Braille outside of her therapy through school. Of course she is grumpy. It's got to be terrifying to be expected to ride a bike no tandem or dive into the water head first three feet above it and ski (moving on an unfamiliar surface in an unfamiliar way). We parents without special needs don't process the world the same way as our kids with special needs. In a way we are like Adam and Eve. They were parenting children but never experienced childhood or were parented. Nothing in our experience is the same as their reality. The one on one was a very reasonable accommodation. The second teacher was able to have a great experience as well cause unlike the first they could totally focus on Lucy. It's a pity they could not have added an instructor to the morning group to shadow.

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  5. Just a side question: Do you happen to know why there is a Welcome banner in German above the high school entrance? Is it for new exchange students? Or does the school have some special German tradition or program?
    Greetings from ... Germany :)

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    1. Poor girl let her quit! Find something else that brings her joy. She can pick it up later in life if she really regrets it. My mom thought the same way you do. I finally got to quit and decades later I still don't regret it. OR find her a different teacher or a different teaching method or a different instrument first. That could make a huge difference! All things need a change up to keep things from getting stale.

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    2. Maybe mom needs piano lessons? It is so hard not to live through our kids. Three years certainly sounds like she gave piano a fair chance. In ten years IF she is mad you letting her stop taking piano lessons she can start taking them again.

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    3. I have five children, the oldest two I am teaching how to play the piano, I'll add the third in about a year. I think you have to decide what the point is. We want our children to be able to piano for church functions as it is a need that often occurs. We've told them they can quit once they reach a certain skill level and since their progression is largely in their hands, they could quit after a year or two if they push themselves. At first it was really hard but now they are progressing well and I think our oldest has come to see the value of it, especially as she has an advantage as she's working on playing the violin. That has worked for my oldest two so far and we feel good about this course of action. I found, I didn't fully appreciate my piano skills until I was married with children and then it's really hard to go back and start learning all over. I took lessons for 11 years and I'm glad I did.

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    4. Why oh why do you do this? Take piano yourself if you think it's so important and give your girl a break.

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    6. I'm not sure how I deleted my comments....
      Buy wow people sure have their opinions when they can 'talk' over a computer screen.
      I played the violin in school for 4 years and then quit.. I regretted that decission. So telling me to start then I know how hard it is.. I know it's hard. We do hard things. I want her to be able yo play church hymns like Heathers comments above. I Didn't say she was bawling every day and its making her feel bad. I said she didn't enjoy it.. big difference !

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    7. You said she had been doing it for 3 years and you have never seen her enjoy it. That you are making her do it. Aren't there plenty of people who want to do music ministry? Can't she just sing along with the congregation? There is only one piano played at a time and hundreds present. Are you taking violin? There is no age to stop learning.

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    8. I have been taking violin lessons fpr 12 years, I started when I was 7 Years old. And I`ve been taking piano lessons since I was 12, for 6 years.
      My music teacher told my parents that I should try out the violin, and my mother insisted that I tried it. But she assured me that when I absolutely didn`t like it, I could quit.
      But I enjoyed it. And when I was 12 years old, I asked my parents to please let me take piano lessons as well, because we had a piano at school, and one at home, and I really wanted to learn how to play it.
      From all these personal experiences I can only highly recommend not to force a child to to something (to play an instrument) if he or she doesn`t enjoy it.
      Yes, my mother had insisted that I tried out the violin, bacause she had noticed that I was musical, but she had also promised that I could stop if I didn`t like it. And this promise was so important to me.
      I strongly believe that every child has a talent, no matter what it is, and that parents should support a child to develop this talent.
      This is exactly what my parents did. (They are not as musical as I am and did not take music lessons in their youth).
      And I will be forever grateful for their support.

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    9. @dresselfamily: I don't think the commenters want to attack you, but are merely giving their opinion. Maybe it's interesting to you that some had other experiences than you with quitting? I have quit the piano, too. Maybe once a year I slightly regret it, otherwise it's okay. I'm not a musical person anyways. :-)
      Of course in the end you have to decide!

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    10. P.S.: I would also encourage you to take up violin lessons again! Who is there to say that only kids can take lessons? You probably won't become a professional violonist anymore, but if you regret quitting now, you still might enjoy the lessons.

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    11. This is an awesome question, dresselfamily (Heidi :). Thanks for bringing it up because I think every parent struggles with how much to push, whether it's a special needs kid or not, music or math, social life or sport. And that's just when you have to trust your gut. I never enjoyed piano lessons growing up but I endured them. I took them for years. Never really had any talent, but I STILL wish I had kept going when my parents finally let me quit. Dave on the other hand never took lessons and never ever wished he had. Never looked back. Max never really enjoyed lessons but dutifully stuck with them for a few years until volleyball took over. He has mentioned a few times how much he regrets not sticking with piano for longer. I think there are very few kids who enjoy music lessons like Matilda above (good for you, Matilda!:) Same with so many other things. I don't think kids know what they "want" to do until they try it for a while. Elle would have never naturally asked if she could play tennis and would CERTAINLY not have stuck with it quite honestly if it wasn't for her friend's mom who pushed her daughter and we just kind of followed along. How grateful Elle is for that! Max never would have asked to play volleyball. Lucy never would have had any desire in the world to learn to swim (which has become one of the most important things she does for her health). I hated writing growing up but I was pushed with grades in school and ended up being pushed by a great AP English teacher I will be forever grateful for because now I love to write. The list goes on and on.

      I think sometimes we worry so much about stepping on kids toes in today's society that we forget it's ok to push here and there. Sometimes kids need a little pushing. Other kids push themselves. I remember my parents begging my little sister to please get a "B" in school because she was so self-determined to always get "A"s and she was driving us all crazy :) Sure there are things kids will try and will realize it's just not for them. Max tried football for one season and it definitely wasn't his sport. Grace and Elle tried out volleyball and both decided it wasn't for them. Lucy (and her parents:) gave a valiant effort at diving and found out it for sure wasn't her thing. But so glad we tried!! As parents we just have to figure out how much to expect and go with it. We have to trust our own intuition. And we have to realize other parents may have a different way to do things, and that's ok!

      Not sure if that makes sense, but Heidi, go with your gut! If you feel your kids need to stick with piano, stick with it! But I think an open discussion and expectations are great. Grace and Claire want to quit but we have a rule they need to stick with it until they can sight read hymns. Maybe they will hate us for it some day. Maybe they will praise our names. But we're just doing every aspect of this parenting thing the best we know how and hope it will turn out ok in the end! Ha! Parenting is sure not for the weak of heart I tell you!

      Wow, that was a mini novel of rambling. Not sure it makes sense but there are my two cents. Or maybe a lot more than two :)

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    12. Thank you Shawn xx
      That's exactky what we are doing. After talking to I'm nit kidding g at least 10 piano teachers they all said the same.. don't let her quit... she's not bawling yes not finding it difficult she just doesn't love it.. yet.
      As fir me taking up lessons. . I would love to..if I wasn't raising 3 kids, running to soccer figure skating , school sports, church activities, been the RS president 😉

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    13. Is this a contest to see who's family is the crazy-busiest??!?

      Ok, you have SO many activities (none of which earn an income for your family) and you do SUCH hard things - (no wait, you make your KIDS do hard things...)

      Will they be a complete failure if they can't sight read HYMNS? Tone it down, Mamas.

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    14. This made ma actually laugh out loud.
      No I do not earn an income for my family. My role at this time is to raise my children. I do not have to justify that to anyone.

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    15. No. No you don't. But bringing up all the other things you do for kids, church, etc. makes it seem like you need to justify it to yourself.

      But it still seems like a contest to see who can sign their kids up for the most activities, whether the kid is interested in them or not, and who can be the crazy-busiest with driving the kids around, volunteering here and there, etc etc.

      The whole point of learning to play an instrument is to bring yourself joy and happiness from it. As someone who has played classical piano most of my life, I can promise you that someone who derives no joy from learning and playing the music and is being forced to practice and take lessons- that person will NOT play well. Their lack of feelings and emotions will come through in the way they play. Believe me, no one at church would appreciate them playing the hymns.

      Are you sure it's not just so you as a parent can add that to YOUR list of accomplishments? "Yep, my kid played the hymn today (or won that tennis match, or dived into that pool. Aren't I great?"

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    16. According to a few teachers I have spoken to they hated hated lessons.. but now love to play, so I disagree with you.
      I don't care what other parents sign their kids up for, I'm in no competition as to how many things they are involved in. I live in a tiny village of 300 people, my kids have 10 or do kids in their class. The whole school from K to 12 has 200 kids total.. so don't presume I'm a mom who thinks their kids have to be in everything. EVEN if I was that would be no one else's business.. we're all doing what we think is best for OUR kids.

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  7. Does Lucy regulary meet friends who have similar issues? This could boost her confidence as well. She could compare herself to people who are similar to her and have someone to correlate.

    I don't have a child ( and not with special needs), so this is an opinion from an outsider (and no judgment!).

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    1. I agree, Lucy would benefit from that for sure. The thing is that BBS is very, very rare. She has met two kids (in the same family) with BBS but they live in a different state. We are excited because we just found another family with two BBS kids who live here in the desert and are looking forward to meeting them soon.

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    2. My son does camp and a few other activities with other kids with special needs. Not all have the exact same need as my son. It's a place where he can relax a bit and be his quirky self. He can see someone else having the issue for a change. Perhaps being the person who does the accomodating. Some activities are more mainstream. The world needs to deal with it. For camp they may divide them up based on a type of need. Behavior or emotional, autism, physical challenges. Maybe think broader?

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  8. Where did you ski in Utah? My daughter is just finishing up an internship at The National Abilities Center in Park City. It is an amazing organization for people of all ages and abilities. She has been there for four months and has enjoyed every minute of it. They do amazing things including skiing. You should look them up the next time you make a trip up to Utah. There may be other activities that Lucy could partake in while you are there.

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    1. I will definitely look them up. Thanks for the info!

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  9. I love your home and that's the same wallpaper we have! Would you ever think about doing a behind-the-scenes photography lesson? Like which lens you use and how you get bokeh?

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