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Tuesday, June 11, 2013

The Start of Summer Camp Part 1


Well, today was the first day of summer camp!
Some of you may remember that I got a call earlier in the spring from
the local Developmental Disabilities center saying that they had
three spots left for summer camp for young adults and wanted to offer
 them to our boys.  So we filled out what seemed like a mountain of paper
 work and got physicals from our doctor.  The Mister and I took a
 tour of the facility and then I took the boys back for another tour and
consultation.  After feeling good about the place, we accepted the spots.



I told them that since this was the first completely new venue for our boys
since kindergarten, I wanted to come with them the first day,
 including riding the bus that was going to pick them up!  They said that was fine, 
so this morning we got picked up and were on our way.

I've sat here staring at my computer for a good 20 minutes trying to 
decide how much I should ramble on about all of my thoughts here.
This is a really big deal for us!  

 The boys have attended the same 
school K-12, just 1 block from our home.  They have always known the
same kids, same building, same bus, and the teacher/aide turnover
was very low.  One aide was there all 13 years!  I personally know
the principal, the school administer and several school board members
and teachers.  It's a nice, quiet, small public school and I felt
the boys were very safe there.

We know a family in town that sent their son out of state to a
home for disabled people after graduation.  He had some mental retardation
 but could function quite well for himself
 and he could talk and communicate well.  He loved
the place and did very well for the first year or so, but
things started unravelling and it took quite a while before he finally
broke down and told his parents that one of the staff had been
sexually abusing him for over a year.  He has never recovered,
turning to rage and tantrums.  Anger, fueled with adrenaline, and
gaining a couple hundred pounds made him 
him very powerful and dangerous.  This happened probably 10
years ago and he is still being bounced from group home to group
home.  It's such a tragedy and a ruined life that haunts me.
Even though he isn't my child, I watched him grow up and
think how if this happened to him...who could talk...how much easier
 it would be for one of my boys to be abused and I might never know!

I expressed my concern to a few people over the last month and
most people said, "Oh, but you would know if it happened because
your boys would act differently... become introverted or upset." 
 Hmm....but that would mean it already happened!  
Not good enough!  Geesh!
So that is the concern that I've had!
I waver between keeping them home where they are safe,
sound and happy and letting them get out and experience life
in a broader way.  

Anyway, back to today....I insisted on coming with them the first
day and riding the bus...and they were very agreeable to that.
The boys were happy to see their friend Heather on the bus.
She was in their high school class.  She said she was especially
happy to see Harry.  haha.  Kim, looks like you have some 
competition.  haha.   We liked the bus driver
and the aide...both older gentlemen who were helpful and sweet.
They were thoughtful and asked really good questions about the 
boys. The driver even pulled out an umbrella and walked 
me into the building so I wouldn't get wet in the rain. :)

What happened the rest of the day can be categorized as good,
bad and ugly.  ha. But the good was 90% of the time I spent there,
so I don't want to give you the wrong impression. 
The boys came home all smiles!

I have to say I was totally exhausted when I got home.
(I left them with 3 hours remaining in their day and let them ride the
bus home without me.)  I cried my eyes out, sobbing in a towel,
when I got home. So not like me...not sure if it was just the pins
and needles I was on all day, sheer exhaustion in explaining
three non-verbal kids to aides, teachers, bus drivers, etc.
Or maybe it was just that every once in a while, the 
sadness of having a child with a disability is overwhelming.
You mourn for what will never be.  And even though I look on the
bright side most of the time, it does strike me as sad the things they
will never do or understand and the things they must go through.
And the responsibility I feel for their welfare is overwhelming.

 So, good, bad and ugly... I've decided to share it all...
mainly because I have other parents with kids with autism
who read my blog.  We need to connect with each other
 and keep it real, sharing the nitty gritty as well as the good.
And since this is already as long as one of Pat's rhymes,
I'm going to call it Part 1 and continue tomorrow. :)

The photos above are all that I could take.
I wasn't allowed to take any photos that showed other
students without their parent's permission.
So we have some of the bus ride and then a few 
of them sitting in their room.  And then one with a
train documentary playing on the big screen.
Yeah, that was a wonderful surprise! :)




64 comments:

  1. You are a great mom Betsy! I am excited to read your blog this summer. Those boys are going to have the time of their lives, and give you so much to share with us! Keep that towel handy!

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  2. Oh Betsy, I'm a teeny bit jealous of my competitor...hummm... but I am glad that the boys are getting to venture out a bit and they got to see their school mate, which made them happy. I can only imagine how difficult this must be for you and for them, but with your positive attitude I think you all will do alright. Don't think about that other boy. You aren't sending the boys away out of state. That seems a little strange to me that his parents would have sent him away like that. You will keep a close eye on things so we won't concentrate on the bad...only the good that will come of this new adventure for all of you.

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    Replies
    1. No, not out of state...but things can happen anywhere...even in your own home with a sitter. I feel I need to think of that boy and be smart and not think it couldn't happen to us.

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  3. My heart goes out to you! I don't have any children with autism, but I do have some with emotional baggage, and I too struggle with letting go, and trusting.

    Sounds like they are off to a good start.

    You are a great mom!!! All moms shed some tears over milestones in their kiddos lives. :)

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    Replies
    1. well, you know...emotional baggage is something my boys do not have...and that is a good thing! They are happy, loved and comfortable with who they are.

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  4. Betsy, I think this is the first time I really heard you open up about your fears and the tremendous worry you go through with the boys. I hope it helped to get it out and yes, you are helping other parents with children that have disabilities, and helping me understand a bit more about autism.

    Is it possible for you to clear it with the people in charge that you could possibly arrange to visit periodically to observe? You might note something suspicious and nip it in the bud. And you might also scare off any weirdos that have ideas by making it known you are monitoring the whole situation. Vigilance!

    I'm sure you have already thought this through, just a thought. Hang in there.

    XO,
    Jane

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    Replies
    1. haha...well, I've never had that fear until now...this is the first new place in 13 years!

      And yes, I'm always welcome to come for visits and I thought the staff was wonderful today.

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  5. You're an amazing woman and a remarkable mum. I'm not surprised you have a good cry every now and then. Those of us with far less on our plates do the same. And those who deal with what you do will know and comiserate and give strength and take strength. Hugs to you all!

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  6. I have just a tiny peek into the life of those with disabilities. I no longer remember the days when my brother lived at home. I think perhaps my mother, who has been so stoic since my father's passing, cried all her tears into God's bottle during the years when my brother was small. Letting go of our children is hard enough when they are "normal" and verbal. Letting go when they aren't must be excruciating.
    I'm praying you are able to put them into the Lord's hands and that He will watch over them when your are not there to watch.

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  7. I'm so glad it was 90% positive, and the train documentary was a great bonus! You really are a great mom!

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    1. yeah, the train video was a really good thing! :)

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  8. Dear betsy, of course I understand and share many things that your friends say here, you are an amazing and brave mom is sure but all the moms (and really is) always are afraid about our kids and not matter what age they have! and especially you with your kids is normal and Im agree with Martha I m going to pray especially by you and the kids all these days, alot of love and blessings dear!

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  9. so hard to type through tears,
    you are so strong, such an inspiration,
    all the best to you all!

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    Replies
    1. aw...here...take my towel. ha. I think I'm done with it. :)

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  10. I feel humbled when you share life stories with us about your boys .. I understand your fears, the overwhelming emotions, the frustration, the tears ~~ yes, the tears. I predict that summer camp will be a good experience for all concerned.

    **(at least the boys don't have a "baby sister" to deal with.)

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    Replies
    1. well, that is true! It's always been family or close friends that have stayed with them!

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    2. We still laugh about that postcard Carl sent to us from camp. His was a two week camp for special needs kids about 4 hours from our home. I was absolutely terrified to let him go ... but all was OK and he had fun.

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    3. that postcard was the cutest thing! :)

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  11. Such honesty...really tugs at my heart strings...
    I have told you about my 2 neighbours with Fragile X, and I can still hear their father say to me..."For all the things my boys will never have"...He grieves for those things...
    Everything will work out fine...remember they have each other to look out for...and perhaps protect, in some small way...You....are a true inspiration to me...I must learn to be more grateful for all the things I have...Thanks Betsy...you are wonderful!!

    Cheers!
    Linda :o)

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    Replies
    1. I am sure they will be fine. It's just the newness of it all....and quite a roller coaster of emotions since all the drama over graduation. I loved the staff today and they are in a brand new beautiful building. Some of the kids are violent...which is a concern. But I voiced it today, so they know my feelings. Like I said...it was 90% wonderful!

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  12. It is so hard as a parent to find the balance between protecting your children and exposing them to new experiences that come with some risks. I hate that we even have to think about such awful things, but unfortunately we must. But based on what you say, this camp sounds like it will be a wonderful experience for your boys. It is so nice that they came home with smiles. I think you are doing the right thing... giving this a chance, but remaining vigilant.

    I know that the responsibility for their welfare must be overwhelming at times. And I'm guessing that it has gotten even more challenging as the boys have gotten older. I wish there were some magic words that would make you feel better, but we know it's not so simple, is it? Sometimes you just need to let it all out. I like the positive Betsy, but it is good to hear from this nitty gritty, keepin' it real Betsy, too. My heart is with you.

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    Replies
    1. It is a hard balance...and my tendency leans toward protection. But we are at that stage where new things need to happen, so onward we go! ha. Thanks for your kind words...I know you can empathize and sympathize, too. If you ever find those magic words, I expect you to share! lol....

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  13. hugs...you did good sis...you took care of your boys...and then even gave them some space....its hard, really i know...and ugh on what happened to that other boy...i dont even know what to say there...but you did well...get some rest...

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    Replies
    1. ah, you made me cry again...but in a good way. ha. thank you for the hug. :)

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  14. The first day of something new is always the hardest. You are doing all the right things and I hope you all feel more comfortable as each day passes. Sending hugs to all of you.

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    Replies
    1. thank you...yes I know it will get better. And sometimes not knowing every little anxiety by being home and not right there is a good thing!

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  15. The tears were the love that you have, oozing out.

    Thank you for your honesty and openness.

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  16. Awwwwww, sweet Betsy. I am so glad you are helping to broaden the experience your boys have. Both for you and for them. I think that perhaps the emotion of it all is also linked to what has happened the last month with graduation - good, bad and ugly.

    As I always say, you are so strong and positive and share so much with us. If you didn't "let it out" from time to time you would not be human. You deal with a lot... a LOT! I have crying jags too and don't have nearly what you have to cope with. You have to pat yourself on the back for the incredible Mom that you are.

    I feel for the young man who is in your thoughts. And we should never say "Well, that won't happen to us." But I know you will remain their protector and your instincts will steer you correctly. I hope the boys enjoy this experience and I look forward to Part 2 tomorrow. Rest well. BIG hug to you.

    Suza

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    Replies
    1. thanks, Suzanne. :) I feel better today. Hey, did you make a june fun to do list? Any reading on the roof yet?

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  17. The best thing about this is that the boys are happy. They're not upset or angry over the situation and that's awesome Betsy. It sounds like this is going to be really beneficial for both you and the boys, I understand that this is a massive adventure for the guys and I wish them all the best in the future with this, I can't wait to hear even more about it and hope that it goes well all Summer.

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    Replies
    1. thanks, matt...yes, they were happy and I assume that will only increase as they become comfortable with the new place and new people!

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  18. Damn, you you say you don't rant
    Here at your plant
    That was a bigger one than your last
    Rivals my quick rhyming blast
    haha good dig though
    Knew you couldn't let that go
    And disgusting the humans that are out there
    Abusing the poor kid at the supposedly safe lair
    And yeah they are not to be messed with when they get angry indeed
    Seen that many a time at my feed
    Glad 90% went well for you
    Sometimes a good cry comes due
    Or maybe all kinds of cat hair got up your nose
    And there never was any woes lol

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    Replies
    1. haha..are you rubbing off on me?
      That would be a sad thing to see.
      And if my rants begin to rhyme
      I'm blaming you big time!

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    2. Blame away
      will take all the credit at my bay

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  19. Thanks so much for sharing your feelings, Betsy. I can so empathize with your fears, anxiety and sadness over the things that our children with disabilities will never be able to do or experience. And the responsibility for them can be very overwhelming at times. Even though Matt is verbal (too much so most of the time...lol), he does not "communicate" well so there is always the question of what he is thinking or feeling and the uncertainty of exactly what occurs in situations and settings when we're not with him. It is so very stressful! For the most part, he's comfortable with who he is and he's usually happy, so I'm thankful for that. The summer camp sounds like a great opportunity for your boys and it made me smile to read that they came home smiling -- definitely an indication of a good first day. And how cool is it that there was a train documentary involved -- no wonder they were smiling! I hope the remainder of camp goes well and that the experience is an overall good one for all of you. I wish I could give you a hug in person but a virtual one will have to do!

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    1. well, I'll take the virtual one! :)

      That is very true that verbal doesn't necessarily mean they can communicate well. I've seen that with a few of the boys classmates over the years!

      I have a feeling the boys will request the train documentary every morning. haha. :)

      They were up bright and early, all smiles, and watching out the front window for that bus this morning. I hope all goes well! :)

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  20. SO glad the day went well. Looking forward to Part 2 (and whatever else you're willing to share).

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    1. yeah, I'm glad it went well, too. They seemed happy to go this morning, so that put me at ease. :)

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  21. Thank you for sharing whats in your heart. I'm so glad things went so well for them on their first day! Can't wait to hear more about their experiences.

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    1. thanks, Amy. I hope some how the staff keeps in contact with me so I know how it is going. I wonder if they only contact you if something is wrong. ha. That's the trouble with nonverbal kids...they can't come home and tell you all about their day!

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  22. Your deep feelings were so well expressed in your blog today. Though I am the grandma of autistic grandsons, not the mom, I understand and share your thoughts and fears. So difficult. However, it sounds like the day went well, and the fact that the boys were eager for the second day is a testament to the success of your decision to allow them to have this new experience. I will look forward to your report on Day 2 of this adventure.

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    1. I know...I was relieved that they were eagerly watching for the bus. Maybe it's the bus that they liked. ha...they really did enjoy the trip maybe even more than the day. lol....

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  23. That was quite an impressive post. Eagerly anticipating your second chapter.

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  24. I enjoy reading your longer posts! :)

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    Replies
    1. seriously? usually when I'm long winded, something is stressful and sad! You must enjoy reading it much more than I enjoy living it and writing it. lol.....

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  25. Well, no, I certainly don't enjoy it when you're stressed and/or upset. I just like reading your deeper thoughts. When you share things like that, I think it brings your readers closer to you.

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    1. I see. Hey, you should try some of that deeper thoughts stuff on your blog! ...lol...ducks...

      And, Silver...you really need to learn how to use the reply link! :)

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    2. Deeper thoughts on my blog? Not very likely. Ha.

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    3. You don't want your readers to be closer to you? :)

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  26. Dear Betsy, I always admire your positive attitude. Especially while pondering the burden you have to carry on your slim shoulders. But you would have to be superhuman not to shed tears about all the kinds of lifes which will never be possible for your three precious boys! It is not 'negative' at all to call a sad thing sad and to have anxieties as you described them! Just coping with reality. But do not let these fears overwhelm you! There is a lot of evil in the world but also love and kindness. And I am so glad, I can see in your replies, that you as always seem to be able to pull yourself together very qickly. There is a German saying that it is no shame, to break down, but one not to get up again... For me it is rather a matter of surviving. And I am sure, you will always find new strength. I do not think, I know many women who could manage your special situation as resilient as you do.
    And it is perfectly clear, that after years in which everything was settled, you now face a kind of a turning point. Graduation is over, summer camp is a totally new experience for you as well as for the boys and it´s only the beginning of a new chapter in life for you and the boys. New structures need to be established. Such situations create anxiety for most people. But I am absolutely convinced you will master the future as well!
    And after all what you have written about your boys I believe, that most of the pain and unhappiness concerned with the autism of your sons is for you only! This can be judged to be terribly injust, but it might also hold a large consolation concerning the fate of your boys. I guess I can perfectly understand your grief about all the possibilities of life forever lost to your boys. But this is your outward perspective. The three most certainly do not share this point of view and do not seem to be unhappy. It always strikes me, how comfortable they seem to feel. You have obviously succeeded to create a secure haven of love and comfort around your boys, where the can live quite happy and relaxed. And, what is an extra challenge for you, might be quite an advantage to them: that they are three of a kind...
    Of course, I can only imagine all the details of the bill, you have to pay for that! But I also know, that you will always be able to find and appreciate small compensations! From nice toe nails to furry companions e.g.
    Big hug, Betsy!
    Christel

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    Replies
    1. aw, thank you so much Christel. You always say the sweetest things! Yes, today was better...it's just the first of things that seem so hard...a turning point for sure!

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  27. My heart is sending yours all the support one mother can send to another... I know only how much concern I have for my own... and I could never begin to imagine how much that would be amplified with a special needs child... but, for as much as I can... I send you support and prayers... blessings ~ tanna

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  28. Hi Betsy,
    I have been a bit out of the loop without my computer. I thought about you the other day and wondered what your boys were doing over the summer. I just read part 2...I'm a bit in shock about the lack of security in the restroom situation. I will pray for your boys and your family, Betsy...change is difficult for most of us...and you have it x3. hugs to you...

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  29. What precious boys. You are a good mama. My heart is with you, as you find the best place for your young men. Maybe I've mentioned this before, but I had a handicapped brother, and my folks were always his best advocated. God bless you.

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  30. Hi Betsy .. I love reading and learning about your boys' life and that paragraph where you express your feelings is heart rending ... and you are brilliant how you cope, especially as we read these words. You're incredibly strong - thank goodness for that .. life could do with many like you who show so much compassion and understanding ... I feel for the poor parents of the other boy ...

    With many thoughts - Hilary

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