Good Day - Wanted To Share

[2kids4me]

Our son had a big grin happening today. He is off to camp for a week. It is special camp for kids with diabetes (Camp Jean Nelson in Alberta). I can't tell you how wonderful it is to send him somewhere I know he will be safe and I dont have to explain a thing. The camp is staffed by nurses, doctors, paramedic students, and young counsellors who have diabetes and are very physically active (good role models), and dieticians. Celiac is so common in diabetics, the "bring list" has a part - if your child has celiac disease, bring the following......

There were at least 4 other celiac/diabetics there so Matt would not be all that different than the other kids.

I wish there was somewhere my daughter could go but it is the autism that blocks that road- the celiac camps have no problem giving her synthroid, or administering benadryl/epi-pen for wasp sting - but the counsellors are unsure with how to deal with autism.

So we are watching "chick flicks" and playing baord games and going for long hikes with our dog - just us girls. It will be fun for her - she walks slower and is distracted by details (butterflies) so the annoying fast paced brother will not be an issue

Just wanted to share some good news for us.

Ps, I had added to a thread a while back that we were cocnerned about Kathryn's liver but the urobilinogen disappeared after the appendectomy (I have no idea how/why they would be connected). She is feeling great - so no blood work etc for now

ya mean I can just be "normal mom" for while??

[justjane]

Very cool! I am so glad that your son has a special place to go. How old is he?

I am glad you're having special bonding time with your daughter. Must be Heaven to not have to worry about your ds and having a good time with dd.

Great post.

[Fiddle-Faddle]

What good news! Thank you for sharing it--it cheers me up to read an occasional in the midst of all the problems we all have?

I wish I could think of something to help your daughter. Does she have a good friend with whom she might try a week or two of sleepover camp?

One of my colleagues had some brilliant ideas when their son was diagnosed very early on with PDD(similar to ASD except it means that they don't know what exactly to call it)/Apraxia of speech: they went to the local university's speech therapy program and managed to get a list of students who would be willing to baby-sit, so that when they had to go to work, or even if they wanted to go out occasionally, their son would always be with someone who knew how to work with him. They didn't waste a moment of that kid's waking hours--even his "down time" was organized in a way that he was learning things without knowing or feeling like he was working.

I think the mother/daughter time might be the best thing right now for both of you, but if you feel that she needs something else at this time, maybe you could try to find a college student specializing in special ed or a grad student working on a thesis about autism to come in sort of like a TSS or Big Sister type of thing and work with your daughter on some of the issues that might be holding her back and how to deal with them in a world of "neurotypicals."

The more I think about it, though, the more I think that "neurotypicals" are approaching the autistic mindset anyway--look at the number of kids and young adults you see who are plugged into an I-pod, do absolutely no eye contact, and seem unable to connect with another human being, let alone display any semblance of empathy. The adults that I see and hear on cellphones everywhere seem to be either having arguments with somebody, or telling a friend (loudly) about an argument or conflict they had with someone else. Either way, they seem totally oblivious to how they affect the people around them, or even that there are PEOPLE around them.

I have actually forbidden my son to use headphones. I told him that he is welcome to play whatever music he likes on anything with speakers as long as it is not painfully loud, but that headphones cut him off from the rest of the world. If he wants to be cut off from the rest of the world, he can go to his room for that.

Hmmm--I started out trying to think of what might be helpful to you and ended up ranting. That's not what I meant to do! Sorry--my kids have been playing musical beds all night, and I finally gave up trying to sleep and came down here.

At any rate, I 'm glad you found such a great place for your son, and I bet your duaghter is gaining a lot from one-on-one time with such a caring, understanding mom.

[Guest nini]

that sounds so exciting for your son... when my daughter gets a little older, I hope to find a summer camp NEAR US that deals with only celiac children so that she can be "normal" for a week or so... She's "normal" now, but it would be nice for her to be able to eat what everyone else is eating...

just a thought, I don't know if you've mentioned, is your autistic daughter on the gluten-free/casein free diet? I know of quite a few autistic kids that are on that diet and you can't even tell they are autistic (or only mildly so)... I meet them and their parents up at the health food store when I'm up there twice a week doing mini massages...

[TCA]

Thanks for the ! I think we all could use a week of being "normal" mommies!

[2kids4me]

HI guys, Thanks so much for sharing my joy

My son is 11 (almost 12) and he was diagnosed with diabetes the day he turned 9. Musta been the licking of the bowl and taste testing the icing for the birthday cake that did it

My daughter is 13 and has been gluten-free but not casein free, we saw a HUGE improvement after we found out she was celiac. She actually functions very well - what really blew me away was how she did when I was registering Matt at camp and reviewing things with the nurses ect. ..she saw some dogs (big friendly labs) and went over to see them. Next thing I know she is with 2 other girls playing hot potatoe! I did a double take and was thrilled, she has never socialized so easily. On the return trip, she smiled and said - "those girls were so nice, they talked to me right away and invited me to play a game!" I thought to myself and wondered what makes the difference - then of course it came to me - ALL the kids at this camp have struggled with and had to accept being different, I know of at least 70 kids in the world today who are accepting, kind and welcoming to a stranger - we could learn somthing from the youth!

I digress...... I love spending the time with my dd , she has an interesting perspective and challenges me with "what if" questions daily...always a little smirk on her face when she asks

What if the sky wasnt blue?

What if the sun came out at night?

I arrange get togethers with her friends, she actually prefers to walk our dog - another bonus, she stops and chats with neighbors when she has the dog - the dog acts like a social magnet cause she is a friendly furball.

I guess I havent gone the "big sister route" cause she has been through so many OT, PT, Speech therapies and interventions with adults, and aides at school that she knows they are therapists and not friends (she knows the hidden agenda).

I am going to look into the casein free diet though - may be a challenge since she loves her corn ships and cheese.... and cookies and milk. Oh yeah - I also finally mastered gluten-free choc chip cookies and gingersnaps!

[katecopsey]

I wish there was somewhere my daughter could go but it is the autism that blocks that road- the celiac camps have no problem giving her synthroid, or administering benadryl/epi-pen for wasp sting - but the counsellors are unsure with how to deal with autism.

It is great that your son had such a comfortable time - it gets really tough for kids to keep explaining why they cannot eat this or that.

As for the autistic child, look for somewhere that deals with autism/aspergers. Many parents of autistic children have them on the gluten free/cassien free diet. We are currently experimenting with it, with our youngest who has signs of celiac, but is definately aspergers.

On the positive side of that, although Ihave been celiac for 30 yrs, I was so digusted with the breads and availability of stuff then that I have never really noticed all the online things now available. We are now in a new area (Atlanta) and someone pointed me to a whole food market that sold some gluten-free stuff. I was expecting the usual small place, but this is an enourmous organic market where one of the owners is celiac. I got gluten-free fish fingers (yuk, but kiddo likes them), gluten-free cherry pie, and a bunch of flours to cook with. Right now the bread machine has a gluten-free pantry mix in it - that was so easy - just put liquids in and pour in the flour mix and press - start!

Of course I am far more likely to bake cookies etc for him than I ever would have done for me. We did brownies the other night - I had no idea what a brownie tasted like - I had to ask the kids if it was cooked enough.

[2Boys4Me]

I love spending the time with my dd , she has an interesting perspective and challenges me with "what if" questions daily...always a little smirk on her face when she asks

What if the sky wasnt blue?

What if the sun came out at night?

I hope you have a great week with your daughter. I'm sure Matt will have a blast at camp.

At my house I get: Why is the sky blue or why is the sun warm. I usually answer with a catch-22. Because it's not green or because it's not cold.

[2kids4me]

I usually answer with a catch-22. Because it's not green or because it's not cold.

I love it - gotta try that and see what she says!