Friday, May 18, 2012

Is it June yet?

May has been a rough month so far.  We had a night nurse that had been with Casey for about 2 years.  Up until early 2012 she was good.  She was late all the time, but she never called in and did a good job when she was here.  We could live with the lateness since she was good with Casey.  However this year we started having other issues with her (I won't go into details).  After a while it just got to be too much.  We let her go at the end of April.  She was doing 5 nights a week.  So here leaving means I have been the night nurse.  I seriously don't know how I did this for 4 years before we got night nurses.

Our weekend nurse that has been doing Saturday and Sunday nights offered to pick up 3 more and go full time with us.  However, she had other patients.  The agency had to find coverage for her other patients before she could switch over to working with us full time.  This week she was able to pick up 4 nights, and starting next week she will be covering 5.  We hired a new nurse to pick up the other 2.  I stayed up with her this week to train her on Casey's sounds, movements, schedule, etc.  She did pretty good.  It takes any nurse at least a few shifts to really pick up on Casey's needs.  I hope that this week I can do spot checks (every hour or so) and that by June she will be all set. 

Of course, while we are short handed Casey got sick.  She has tummy issues off and on all the time.  Usually we can give her something and get them under control pretty quick.  This last bout was not so easy.  In addition to the tummy issue she also seems to have an eye and possibly ear infection going on at the same time.  We were about to head to the ER last weekend when she finally started to show some improvement.  I think she heard me say we were going to the ER and she was not having it :)

She missed school this week and last, but the plan is for her to get back to class this week.  She has a field trip to a bookstore this week for story time (of course this means that I drive her and her nurse and we just meet the teacher at the store- but it still counts as a field trip).

There have been a few highlights since out last post- it hasn't all been bad.  The very last weekend in April we organized a special needs play group.  The organization I started last year CLU Campaign, hosted the playgroup at the new accessible playground in Round Rock.  It was a lot of fun.  Casey had a rough morning and Tim was busy, so the shower I had planned on getting did not happen (welcome to being a mom), but other than a really bad hair day, everything was great.  We are hoping to have special needs playgroups at least quarterly.  If I can make it happen monthly I will, but no promises.

Casey has started music therapy again.  Tim found a music therapist (at Coffee Bean of all places) that is great with Casey.  She started a couple weeks ago and is going to come to the house twice a month.  She has also agreed/volunteered to help with the next playgroup so we can make it a music playgroup.  I think it will be so much fun.  As soon as I find the place we will make that happen.

The nurse that has been on maternity leave is going to start doing a couple half days again in June.  Casey will be very excited to have her back.  She has gone to visit her nurse and the baby a couple of times.  She is always so excited to see her nurses.  We are very lucky to have such amazing nurses.  I really think we have the best ones. 

Between needing to sleep for doing the night shift and Casey being sick, we kind of skipped Mother's Day last weekend.  My family is coming over tomorrow for a delayed Mother's Day lunch.  It should be a nice day.  We hope that everyone is doing well.

Sunday, May 06, 2012

Special Needs Party Planning


Planning a party for any kid is a lot of work.  Planning a party for a child with special needs can be extra tricky.  It can be done though.  Each year I work very hard to try to come up with a wonderful birthday party for my daughter.  Over the years I have come up with some great, very accessible, party ideas.  Hopefully these ideas, and some Special Needs Party Planning Rules I have come up with will help others planning a party for their child with special needs.  This is just a few ideas, there are tons more out there, but this list should get you started. 

Arts & Crafts Party-
Boys and girls can both have a lot of fun at an arts & crafts party.  You may have to recruit some help for kids with limited mobility.  Our daughter loves arts & crafts, a lot of the time she is just saying yes to the details and/or placement of things, but she loves to be part of creating something.  We did a princess craft party for her once.  Her and all of her friends made princess tiaras.  They had a great time.  We had lots of other things planned, but they all were having so much fun the entire party was spent at the craft table.   Boys could do something like pirate hats, or treasure chest or maps.  The list of arts & craft themes is limitless.  Just take what your child is into, and Google that topic with 'Arts and Crafts' you are sure to get a bunch of ideas returned.  An added bonus is that the crafts they make can be the party favors.  You don't have to waste time and money on goodie bags that just end up being tossed later anyway.

Movie Party-
Not all theaters are willing to do this, so you may have to do some homework on this one.  If your child is into movies, you can find a theater that will let you have the entire theater for a showing.  They will usually work with you to make it quieter, brighter, etc. as well.  The trick we have found when we did a movie party was that to get them to be flexible without having to spend a fortune, we had to be flexible on the day and time.  It was worth it though, everyone had a great time.  We have a luxury theater in town that only seats 40, but the seats are extra big.  We are able to put a tumble forms with wedge in the seat, or her bean bag chair.  The lobby is nice as well for doing pre-movie parties.  If you have an iPic or similar style theater near you, it worked great for accessibility.

Sing-A-Long
Many music therapy centers offer parties.  The fee is reasonable (in most cases) and if your child is into music, this can be a great party idea.  The therapist will get everyone involved, there is dancing (for those that can dance and move) and singing (or just making noises).  A great idea is to get the song list ahead of time.  For not much money you can get blank CD's and burn the song list for all the kids coming to the party.  You can make and print out CD jacket covers too.  Maybe something like 'Casey's Party Mix- 2012'.   If you don't have a music therapy center, you may be able to get a music therapists to come to your own as well.  You can tell the kids coming to bring their favorite noise makers with them. 

Story Time
Many book stores have story time.  Some have party rooms as well.  If your child loves stories, start calling your local book stores or libraries.  You can rent the party room and invite the kids in for story time.  We did this recently and the kids had a blast.  In addition to story time, they were also able to make bookmarks.  The store we used had party bags for the kids, but before I knew this I was working on writing up a little story just for my daughter about a birthday princess.  I was going to have it printed and give that as a favor to the kids.  You can do something like that pretty easily.  I found some calendars in the dollar bin that had wonderful pictures.  I then cut the pictures out and used them as a base for my story.  You can scan those into your computer, or use drawings from your child.  Then there are some sites that will do professional printing/binding.  Or you can use Walgreens for nice but not crazy expensive.  There are lots of ways to print it out yourself at home too.  At craft stores you can find lots of affordable ways to create your own book.

Parks & Playgrounds
Many cities/towns are building accessible playgrounds now.  Search for accessible playgrounds in your area.  These are great places to plan parties.  I would suggest going ahead though, and making sure there is a place out of the weather in case your child needs a break.  I would also suggest making arrangements with the city.  Some cities require this, but required or not, it is recommended.  They can reserve the area for you so you don't have to worry about kicking other people off the tables.  You can usually hire face painters, balloon animal clowns, jugglers, or whatever your child would like to see to meet you in the park.  Balloon animals make great party favors too. 

Home Party
There is never anything wrong with a traditional party at home.  Invite friends and/or family and just focus on doing the things that make your child happy.  Even if that means watching a movie on tv, or just relaxing and being around loved ones.  A party does not have to be action packed.  Some kids prefer and thrive on quiet, controlled environments.  If that is your child, do force them into a party because that's what you think you have to do.  Make sure their birthday is special, but don't make it torture. 

Virtual Party
Unfortunately, some of our kids spend birthdays sick and/or in the hospital.  That doesn't mean they shouldn't get a special day.  Hospitals are usually great about helping decorate the rooms (nurses are often very creative).  If your child is in the hospital, or too sick to be around others, have all of your family and friends take a picture.  Pick a theme (wearing silly hats, making funny faces, holding a stuffed animal, whatever).  Get them to send those pictures to you (email or printed).  Then on the special day show the pictures to your child and let them see how much everyone misses them and wishes him/her a special birthday.  If you have enough time you can even put them all together with the birthday song (or any song) and make a little slide show for your child to enjoy.  Or if your child is more responsive to sound, instead of pictures, have everyone send a voice message.  There are lots of ways you can safely celebrate your child's birthday and include loved ones, without ever leaving the house or hospital.  My daughter loves when her friends make her pictures to hang in the hospital room too.  Personal touches like this make any day brighter, especially birthdays.

Regardless of how you celebrate your child's special day, be sure to do something.  Just because our kids have special needs, does not mean they don't still need to be kids.  They deserve a day all about them, and what makes them happy.  In my opinion, they deserve a lot more than just a day.  Here are a few rules to follow when planning a party for your child with special needs.  Hopefully if you follow these rules, everyone will have a great time.  

Rules:
  1. Don't worry about what all of the other kids are doing for their parties, focus on what your child likes. 
  2. A party does not have to follow a preset agenda.  Have enough things planned to fill the time, but if an activity runs long and people are enjoying it, be flexible.  You can always save the items you don't get to for another day.
  3. Don't focus on food.  Many special needs kids have special diets.  A lot of parties and holidays focus on food.  If you have a child that cannot eat cake, don't center the party around the cake.  You can still have one for everyone else, and sing happy birthday, but don't make it the focal point of the event.  Also, if other children with special needs will be attending, it is a great idea to let families know in advance what foods and drinks you will have.  This will give others warning in case they would prefer to bring their own snacks.
  4. If your child is hard to buy for, be sure to either provide guest with some ideas, or request them not to bring gifts at all.  Many parties have started collecting and making a donation in the child's name instead of bringing gifts.  We don't do gifts because in addition to being hard to shop for, our daughter is not physically able to open the gifts and her and her special needs friends are not able to stay focused on watching me or her dad open her gifts.  We would much rather use the party time for things she and her friends enjoy.
  5. Time!!!  If your child is not able to tolerate long periods of time, there is nothing wrong with having a party for only an hour (or whatever works for your child).  It's much more important that your child has a wonderful hour, than a good one followed by 2 painful hours trying to calm them down.

Tuesday, May 01, 2012

Library Day

Casey was finally able to go to the library with the kindergarten class today.  She had a great time.  She sat at the girl's table for story time and made a bunch of new friends. 

She really likes books about elephants.  We laughed when she went with just her teacher 2 weeks ago and picked out all elephant books.  She picked out more elephant books today too.  At least she's consistent.