United Brachial Plexus Network, Inc.

I'm taking what I feel is a huge leap this year for Maia and sending her to a small day camp close by. Last year she was at the little camp at our synagogue and she was really coddled through the experience and there was not much to worry about there - two older teachers and two high school assistants for 8 kids!! (how much better can the ratio get??) So this year we had to move because they don't have a 4 year old class.

So it's a small creative arts day camp ages 3-14- approx. 270 kids. My eldest daughter will actually be an art teacher there. And actually I will be a driver of 4 kids so that they discount maia's tuition (otherwise it would be impossible for her to go)

Maia will have a daily schedule that will include dance lessons, arts of all kinds, music lessons, swimming lessons, and sports and the normal camp group activities/games, etc.

Anyway - I am so worried about this and also scared - very teary eyed about this today. I looked around the camp and there seems to be no 'danger' areas (outside of normal outside stuff). But at her current school, all the teachers know about Maia and they keep a special eye on her and help her in the classroom and all. I know I'm probably just being a big baby.... I'm worried about letting my baby go into the hands of strangers and I'm worried about her arm. She'll be six months post op and I'm scared to death that she'll get dislocated or something else worse. At school now she's alone but I'm with her every place else...I take her swimming - I take her to gymnastics and stay in there with her - we both take her to the playground and play with her.

Will they know how to help her adapt to things she can't do? Will they treat her respectfully? What happens when they do something and she can't do it? Will she feel left out? What if someone yanks her arm? What if someone falls on her arm? What if..what if ..what if...

I guess I need to hear from parents whose kids are a bit older and have gone through this transition to independence. Thanks in advance!

-francine

What if you worry less and live more. All your worries have merit, but sometimes we need to let them find their own way. I tell my daughters teacher that she has limited use of her arm and leave it at that, she finds her own ways of dealing with things that she may have a harder time doing. I've yet to ever see her give up, but we've never allowed her to use her arm as a handicap or as a "I can't do it", actually it's a very small part of our daily lives, she goes to therapy twice a week, we stretch her, it's there, it will always be there, but it doesn't rule our life.

Kids are funny, she told her therapist the other day during a session when she was trying to get her to do something "You know this arm isn't like the other one, it's different, and I can't do things with this arm the same way I do with the other", her therapist was floored, this comment from a four year old. But the truth out of the mouths of babes.

If you have anxiety, then your daughter will have anxiety, kids are smart and have a great sense of what others feel. I don't say any of this to be judgemental of you (because I'm not,but after feeling your emotions through your posting) how can you expect her to be emotionally stable about her arm if you aren't.

Francine,

Having known you for several years, I just want to offer assurance that I think you are a great mom and that Maia will not suffer from you being able to express yourself fully on this forum. I'm sure that most of us who post here and who have been part of this community for years recognize that this is the place to express the anxiety and emotions we all sometime feel but are reluctant to let show at home. A safe environment is so important for expression.

My interpretation of your fears regarding summer camp are that they seem perfectly normal, regardless of Maia's disability. It is so difficult to let go of our babies as they grow! I think back to Ian's first summer camp experience and can relate to your fears. I think that as moms it is our "job" so to speak to worry about our children and to try to protect them...it is also our "job" to send them out into the world and watch them find their own two feet.

Given Maia's age all the feelings you are having as her mother seem perfectly normal to me. It is such a time of firsts and growth!

I'm glad you feel comfortable expressing yourself here, and sharing your fears, and I hope other moms who have had similar experiences can share their thoughts as well in a supportive manner.

Bridget

Hi Francine, I'm sorry that you are feeling so worried about everything - but it is understandable!!! It is very emotional trusting others with your child. I started Brittney in a twice a week day camp at the "Y" when she was two. I thought the experience would be great for her and it was. I have to admit that I spied on her so much while she was there though - especially the first week. I was behind bushes, in the hallways flat against walls trying to blend in - you get the picture. What helped was that Brittney was very verbal. We had practiced so many times what she should say or do in certain situations, and she knew what to say to her teachers about her arm and what to do if she needed me there. I had told the teachers to please call me immediately if something came up and I'd be right there (faster than they'd think - since lots of times I was camoflauged in the building:) - but Brittney did great and it taught her how to be more independant - very important. She learned how to make friends on her own without me and handle questions by herself about her arm. I think that the experience was excellent for her in every way. I bet Maia will have so much fun at this camp and she'll be so proud of the new friends that she makes. Also it is great that Maia's sister will be there just in case Maia might need her. Does Maia know how to handle different questions or how to walk up to other kids and introduce herself or ask their name? Brittney used to tell kids if they asked about her arm, "this arm isn't as strong as my other arm so my other arm helps it sometimes". With the swim lessons as part of the camp - I've found that two piece swim suits work easiest when they are little, and you can wear a big sundress over it so that her suit is already on to make changing from clothes to suit easier. If you pack her lunch everyday - keep it all finger foods that she can do all by herself so she'll be independant and confident in herself. I know you will still worry about her and the other kids and her arm but hopefully hearing about all of the fun she has will help you not to worry so much. I'll be anxious to hear all about her adventures in summer camp! Christy

I understand completely how you feel....I have felt that way everytime I've sent one of my kids out into the world....not just my BPI child.

You're a great mom and moms are supposed to protect their young. I think it shows you have strong instincts.... The one thing that I know is true is that because Maia and all our kids have this injury, they will have to learn to answer questions, put up with butt-heads(Jameson's comment),educate others....etc...
I know it's not easy, but she will do great. About getting injured more....there are no guarantees...even for those children who go out without anything wrong....Try to relax and take one day at a time....and spy on her if needed!!!LOL!!! I really like the idea of giving her the right words to say that will help her. Maybe you can role play different situations....little girls love to play school!!! When different things come up she'll be prepared!!
Lots of love to you!
T.

Hey Francine,

Well, Kelsey is 5, and I went through the same thing when she was 4. We decided that she needed to be with other kids, so we sent her. She did great! I am sure that Maia will too. I was amazed by how the kids really pitched in and helped her do things if she needed it. The teachers were there to help with problems, and were really watchful over her on the playground and during group games and activities. When they did arts and crafts, the teacher taped Kelsey's paper to the table with scotch tape so that the other kids didn't really notice that she couldn't hold her paper still. They were excellent about keeping things quiet, and not making a big deal.

It is so hard to let go, but I guess we all have to whether we like it or not. We have never told Kelsey that she can't do or try something (I think that is why she is such a daredevil now), and she takes everything in stride. I can tell from the chats and your posts that you are confident in your decisions that you make for Maia, and I am sure that she will have a great time, and hopefully you will be glad that you sent her there. What a great opportunity to make new friends! Sounds fun! Wish I could go.

I can totally relate to how you are feeling.It's the need to protect and it's normal. Just magnified by the injury and surgeries and all our kids have been through. Heck, I'm a nervous wreck just sending MIchaela to school everyday, but she seems to handle it better than me.We couldn't control the fact that this happened in the first place so it's only logical to want to keep anything else from happening to them. You're lucky in the fact that Maia's sister will be there. At least that should give you a little comfort. I know they are far apart in age but I bet older sis will watch out for little one, that's natural too. So go ahead, be the good mom we know you are , and have a nervous breakdown!LOL After all we go through,we deserve it!!!LOL LeeAnne

I know that you are a good mom.
My daughter went to
summer camp last year for the first time at 10 years
of age! I know you have a lot of anxiety. If it was me, I would try to help out there everyday. Why not?
I am sure all the summer camps need some kind of help,
whether it is setting the tables, or helping with singing the songs. If it was me with my son, who has bpi, I would spy on him everyday. Or check up on him as some people would say. Why not visit maia there?
Summer school is suppose to be a relaxing experience.
And maybe if maia know you are there in some capacity,
it will ease her fears, and yours. And then maybe
next year she could go by herself. To me life is
too short to not to do what we as parents want to.
For example we always question our selves with what ifs. Well, we have control over the situation.
We can be there. For the first time or the second.
Just my opinion.
Take Care,
Deb

Thanks for all of your responses...

Although I would want to be there, I've thought it out and I don't want to be there even the first day because that's the day that the kids have to work on forming relationships and that's when they figure things out and I think that it will be good for Maia to stand on her own two feet. (You see - I've processed this letting go thing a lot in the past 24 hours). BUT I will be meeting with ALL of her teachers and specialists there and personally giving them information about bpi's and explaining how things can be adapted, etc. IN ADVANCE. There is a staff meeting on June 8th and since I am a driver I have to be there too!! Great opportunity! And then that first day or two I can peek in without her knowing - the camp office is right smack in the middle of camp so depending on what room I am in, I can probably watch her pretty well. And I will write something up specific to Maia's issues and give it to all her teachers too and get a copy of Outreach to them all as well. And I'll also work with Maia on being more assertive in her communication - at least concerning her arm.

I have a client who is a music teacher so we will be working on picking an instrument for maia with maia...to see which one she likes best and which one works best or how we can adapt it to work for her. She has a student with no fingers on one hand and she's an accomplished violinist!..so she has some experience with adapting equipment. For art - her sister will be there. For swimming, well all the little kids wear floaties anyway, so Maia will have her own floatie there. The only couple of things I weary of is t-ball and neucom(sp?) but maia does have experience with balloon baseball, so maybe by then she'll be far along enough in her rehab and if not, I can bring a bag of those white balls with the holes in it (know what I mean?) that are light as air and maybe they can use those for her.

I guess my message is that I'm out of my tizzy - thanks to all of you - and I'm working proactively on it already and it feels good.

Now...if only she can be potty trained by then!! yikes!! Her birthday is in May and she knows that the END is on her birthday - lol. She thinks that her 4 year old birthday is also a goodbye pullup day - that no four year olds wear diapers anymore. So I'm really hoping that between now and then we can help her figure this out, too.

My eldest daughter is really SO happy about working at this camp.... working AND doing her favorite thing in the world - ART. I haven't seen her this happy in years!! There's some major healing going on.

anyway - thanks again,
francine

I knew you'd figure it out. You always do!! Great news about Adena too. I'm sure it'll be good for you too that she'll be out and working during her break. I used to work like crazy on my school breaks so I could have some funds to help carry me through the semester b/c my on-campus P/T jobs just didn't cut it. Maybe your girls will do some nice bonding too. We'll all be looking forward to some pics. Be sure to send lots of film with Adena! -Tina )