Obtaining a Second Opinion

Sometimes in the course of life, whether for special needs or not, we need to obtain a second opinion. Whether for ourselves or our children, it can be hard to know where to start. I took Jaxson to Dallas at the beginning of January, and it took months of research and planning. I wanted to pass on some knowledge I learned during that process and hand out some tips for those that need to travel out of state. For the purposes of this post, everything will be related to your child.

The first thing you need to ask yourself is what you want a second opinion for. Does your child have a diagnosis that you question? Is there a doctor recommending surgery and you're looking for other options? Have you heard of a fantastic doctor who specializes in kids like yours? There are a number of reasons to seek a second opinion, so be sure you know what you want to answer before you start. For us it was easy; we just had to wait on Jax to stop having surgery so I could make plans. Since Jaxson had multiple skull surgeries in his first two years, we knew we needed a craniofacial specialist.

Once you know what you need, do research (if you haven't already) on what typical treatments for this diagnosis will be. You can look up non-profits that fund research, organizations designed to support, and use the National Institute of Health website to gather the information.

Next you can start looking up doctors and hospitals that specialize in your area of need. If you aren't on any Facebook groups that link to what you need, start there. Facebook is not just a great way to network and find people who understand you in situations where others don't, but it's a great place to learn. When you are in a specialized group, you can find support and give support equally, and others are happy to share their experiences with various doctors and hospitals. Once you get a few names, do your research. Google every doctor and hospital and see the reviews, check out recent articles in medical journals, ask other parents you know who are in a similar situation and may have heard the names. You'll want to make sure that the doctor you seek is associated with a known board and that the hospital is ranked well among its peers.

When you have the search narrowed down to the doctors of your liking, it's time to contact your insurance company. Start the process of seeing if your insurance will cover a second opinion, especially if it is out of state. Because Jaxson is on Medicaid, nothing out of state is covered, which I was happy to know well in advance. If you find out that your insurance won't cover part or any of a second opinion appointment, go back to those non-profits and organizations you looked up before. I was able to obtain assistance with a hotel and airfare through the Children's Craniofacial Association, and I know they would have helped with other expenses had we needed it. They required a simple application and a few documents to support our need and that was it. They were very easy to work with, and I like to think that other places that offer such things operate in a similar fashion.

While you're working with your insurance company, go ahead and contact the doctors you have selected and find out what they require to obtain a second opinion. Every doctor requires records, of course, so make sure you have copies.

Electronic copies can sometimes be accepted, so you'll need to create a zip file or use Google Drive in order to send them. I was lucky enough to find a doctor who was willing to email with me initially, and after many back and forths, I was able to determine that we needed to go see him. Most doctors will not do this, and I admit that I was very fortunate in this instance, but I found it by doing a Google search on a name given to me by a friend on Facebook. Turns out that we went to see this doctor, and I also admit that his office staff is second to none, including the staff we see on a regular basis, whom I absolutely love. That's something that I put a lot of stock in when looking for a doctor, if you don't have a happy staff then something is wrong! And these ladies aren't just happy, they are efficient and they follow through. Also very important in my opinion.

After you have gone through this process, you've weighed the pros and cons and you've determined that you want to go through with the appointment. The hard part is done, the next step is to actually make the appointment. Make sure you set it out far enough that your finances won't be strained. You want as much time to plan and save as possible! Once the appointment is made, you can begin your flight and hotel search.

Party Planning for Kids with Special Needs

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.