Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at

Monday, June 10, 2013

Day Camp for Special Needs Children

I don't even know why I am doing this post right now but maybe it is so I can get the day behind me. I am exhausted. A few weeks ago I registered Asia for a "special needs" day camp to be held at Camp Jeremiah Johnson. I could be there with her as well as her Dad but, he had to work so I figured I could handle it on my own:)

I had a list of activities that she could be involved in and I was excited to try something new with her and thought it would be fun to get her out of the house and spend the day in the mountains. I am always looking for activities for Asia to try because she usually can not be involved in regular ones. Activities were: BB Guns, Boats, Archery, Games, Craft, Rockets, & Science Lab. I had no idea she was going to be so (I should put SO) difficult. She spent a lot of the day like this...

Maybe I misunderstood what the camp was? All I know is that when I signed up I thought it was just a "special needs" day camp and that it would cater to children with special needs. I could only pick out a few children today that may have fallen into that category (I know I probably didn't recognize all of them). It seemed to me that the majority were just normal cub-scouts and all "boy" cub-scouts. That would have been OK but all the activities catered to these children who didn't need special assistance. Asia really couldn't do any of them and it seemed as though the "leaders" didn't really know what to do with her. I knew I was going to have to help her but it was pretty hard. All conversations were directed to "boys" even though there was a handful of girls there participating. Asia started the day out grumpy because she thought when I was getting her ready this morning it was to go get on the bus and go to school. When we got there I had to carry her EVERYWHERE or she would throw herself to the ground and cry:( My arms got a insane workout today. I felt bad for her but I decided she was going to stick it out until the end. If it was up to her she would be at home in a bed with a iPad. Maybe someday she will remember the BB Guns and how to shoot, how to paddle a boat or the Archery? I just never know. She hated the loud noises! Some of her Autistic-type symptoms coming out. When the kids would yell, or they would blow the loud horns she would flip out and cry.

After opening ceremonies the first activity was BB Guns and she refused to wear goggles-not a surprise:) I wore them and helped her shoot-I have to say we did pretty good knocking down cans. Second activity was Boats and she actually liked this one. When the boys were putting on life vests she said "me, me" and wanted to go.

 She didn't make a peep on the boat. She thought it was funny when the camp leader would pretend to be tipping us over (of course she would:). I tried to help her paddle the oar but when the group really needed some help she sat in the middle. When we were done she handed in her vest and said "thank you". Maybe this one thing made her whole day and maybe mine as well.

Third activity was Archery-she really was not liking this one. It was starting to get hot and I think she was starting to get hungry. I tried to help her with this but only once. She kept trying to grab arrows and throw stuff down so we sat out for the next couple turns. She really started her tantrums at this point, throwing herself down on the ground and she got really difficult-I was really tempted to go...

I didn't leave- and the next activity the boys made wooden airplanes. The camp leader got beads out for Asia and she made a bracelet. (That was nice of him). She noticed they were cooking lunch next to us and really wanted to eat. They served chips and soda with the burgers. This made her happy even though she looks like she has a serious scowl on her face:) Chips are her favorite!

After lunch they made rockets-she was so done with camp at this point. I still made her do it-am I so mean???:) She did like firing the rocket.

Last was a Science Lab demo-I didn't even try with her. We were sitting right next to the loud blow horn and when it went off -it knocked her flat to the ground in a panic-I felt bad. We walked up to wash her hands off and cool down. They handed out a questionnaire to fill out and I did that-then it was closing ceremonies and I decided to go. I tried to be honest on my questionnaire-not to be frustrated just that it really didn't cater to "all special needs".  She got the experience I wanted her to but I don't know if I'll do it again unless she progresses. She is getting to big to carry around and strollers would not be a option there. She got a bead with each activity and a fun tag. It would be a great opportunity and a lot of fun for boys with special needs that are a little more advanced then Asia. It is great that they offer it.

I did realize something today-this cute little girl asked what Asia's disability was called and I sighed...because there is not really a "name" telling people she has 2q23.1 microdeletion syndrome gets a little tiresome. Maybe one day they will have a name that's a little easier to say:) When I was leaving, I turned in my paperwork and they switched Asia's tag out for one that was more for a "girl" which was cool. I also got a couple of really nice "props" from the adult counselors for bringing her. I am sure I looked beat and I so appreciated those nice comments. Maybe all this hard work will pay off someday...

1 comment:

  1. I commend you for sticking it out and ensuring Asia had the chance to participate at this camp- you both were great sports, despite the camp apparently not being up front about how special-needs friendly the activities would be.

    My son has autism, and will be turning 9 this summer, so I understand the growing need to find new and suitable activities. I recently found these great resources for parents of children with special needs- I've been able to find many other parents in my area, as well as activities and events we can both attend. Best of luck to your family, I look forward to reading more of your posts!