Wednesday, October 19, 2011

Tools to handle anything!

There was a time not very long ago that we had essentially no way to prepare meghan, give her the information that she needed to be successful in various experiences. I don't know if it has finally connected with her or the repetition has helped or it makes sense nonetheless, it is working.   Over the last few years we have acquired certain techniques that work so she can be successful but also she can have a say in the decisions. When we go anywhere we take the time to explain some of what may go on.  We use visual schedules which are pictures in an order so she knows what is going to be done and when she can leave which is a huge motivator.  We do what is called as foreshadowing basically telling her what is going to happen to prepare her and when we are teaching something new we have the visual schedule with us and use it as a guide during the activity so she can learn it.
Everything lined up today.  I had the picture of the doctor that I showed to her several times before we got to her office, and wrote down the order in which this appointment was going to go.  When we got in the room the doctor and I wrote down the order and all the steps in this visit.  We took the time to cross off each step as we finished it.  It was very good experience and meghan responded excellently to it.  I also thought the staff did it right as well.  I think another factor is that I was calm and confident too.  Our kids can pick up on our emotions very well and I think if we can control our emotions our kids will do much better.  So the next time you are going to go somewhere new or a stressful situations have your tools with you.
1.  Explain in terms that they will understand what they are expected to do.
2. Bring visual schedule or written schedule so they know when the visit will be over.
3. Explain in simple terms prior to visit, use a book or write a social story so they get the idea into their head ahead of time.
4. Bring digits, comfort toys to use as distracters or if there is wait time.
Like I said everything lined up.

New treatments yah or nay?

This journey we are on is evolving like most people's lives. We are always thinking about something new that can really make the difference.  This is insurmountable task!  Its a constant stress in my life even when things are going well.  We know especially with Epilepsy that medicine stops working and then we are in a mess.  So for the last 13 years I ALWAYS have a backup plan.  This really irritates my doctors at times but they have come to accept that this works for us but keeps meghan safer so they comply. About 1 month ago a friend of mine stumbled upon something new that she decided to try.  She is getting great results so now I am considering it!  This is the hard thing about making decisions.  What may work for 1 child it may or may not for another.  Meghan is a late responder to most treatments that we have done.  When I started learning about this new method I was really unsure.  We decided to get her evaluated and see what he would offer.   I've decided that I have followed neurologists, Gi doctors, orthopedic doctors, therapists, teachers, parents and all of them have ideas none have solved the core of why meghan is still regressing!  Why is it that we put so  much weight on those team members but we are convinced not to go with methods that are  not as accepted.  Do we really have that more information to show better results? I know that doctors need data, they need evidence based studies and they need more than antedoctal experiences.  My gut is telling me to try it and see what results I get.  We have spent 1000's of dollars on treatments, methods that show no results so we think just doing the conventional treatments are good enough?  But the time is just ticking by.  Why should we be afraid to try other methods that may prove to open another door ?  Maybe or may not figure out what is wrong so we'll know how to fix it!
I'm not suggesting for you to try this method but I am suggesting that you keep an open mind to new methods and if they may open a door to your child's health to consider it.  Talk to all your health professionals and get their advice.  Then make your decision.  Sometimes this takes me weeks other times its instantaneous either way its heavy on my heart.
Personally I think medicine is just a bandaid. For my child, its needed everyday but how do we heal the core of the issue?  That's what this method is trying to do. And there are many other methods that do the same like homeopathy, natural medicine, etc.
So for me this method is a yah and we'll see what the results will be.  Stay tuned!

Tuesday, October 18, 2011

MONDAY, OCTOBER 17, 2011

I am in here!

I read a wonderful book this weekend that I stumbled upon as I picked up a few books for my book club this past friday.  I am hosting one of the book clubs at my house and we are to find a book for our month.I wanted to find something about autism but more importantly about meghan going nonverbal.  It was amazing it jumped out at me.  It's called I am in here by Bonker and Breen.  It's about a 13 yo gal that has autism and is nonverbal.  As I began to read this I realized that she was also trained and learned how to write poetry from the same mentor we and meghan has-Soma!  How coincidental is that or is it really of higher being.  I choose the later.  I was supposed to find it and share my story and create hope to meghan, myself but also those around me.  It did that.  Gave me hope and now I hope it will encourage meghan.  I am starting to read it to her and talk with her about it so I can keep her hopeful.  I cannot imagine how it feels to her not to be able to talk, to share her feelings and to yell and scream when people don't get it!  I know this journey we are on is a long one- one in in which is evolving.  Some for the good others not so much.  I guess when I read it- it gave me the sense how I can support and talk to meghan better, how I can encourage her to get better on the letter board and to move her forward.  A great read and one that I will reread I'm sure.  The other great thing about this book was the poems that that elizabeth wrote.  This also was encouraging to me but will be inspiring to meghan too.  Her spelling is not as proficient as elizabeth but its coming.  Like i've told teachers, therapists, family members is she is in there!  How do I get her out? I keep doing what I am doing!  It is truly an inspirational book and one i will share with many of my friends, families, strangers and bible study moms.
If you want to check out how soma is helping 1000's of individuals check out her website @ halo-soma.org.  Her apprentice Erika Anderson also is doing the same in Wisconsin. Check out her website @ www.acetc.org.  These people are changing people's lives and the life of their families!

TUESDAY, OCTOBER 18, 2011

Are you a detective?

As a mom, we have many skills and we wear many hats.  I don't think of myself as a detective but that is exactly what I have to be these days.  Today is one of those days.  Even when your children can communicate in someway we have to use these very important observations, instinct, gut feeling to figure out what is going on.  Today I have to use all that and more to figure out what is going on with meghan.  She has been suffering from severe fatigue, loss of appetite  and waxes and wanes with her abilities.  That is where I go into looking at all the variables it could be.  Since my daughter has a severe seizure disorder that is always there in the mix, what supplements or medication changes have I done, what has she eaten or could she be getting sick? This is to name just a few. But I also have to look at her developmental stage as well.  Most adolescents are changing significantly and this takes a toll on them.  It's unusual for my daughter to sleep so much or not to eat so my detective hat goes on!   So I pull out all the stops and look at if she is ill first and then go down the line.  I need to confer with many doctors, her teacher and watch  her carefully to get a clue anything to go on.
Have you ever felt like this?  How do you figure out what is going on when your child is not feeling well? Communication can come in many different forms.  I don't have verbal communication with her but even when we did it was not reliable when she was not feeling well.  We now use pictures and choices for her to give us a clue what is going on with her.  We ask her in a different way to make sure we get the same answer.  I also use my gut instinct to determine if she is getting sick.  I think my observation skills are probably one of  the most important ones though.  I have the opinion that she will show me what she can and is able to do. If I see that she is in bed then she needs to sleep.  We also use something called pecs(picture exchange communication system) it has a picture and word that usually you get introduced by your speech pathologist as an alternative communication strategy.  It's a small green book that we have several pages that include: activities, food, emotion, art and community.  It is a great way to narrow down what she needs and is feeling.
Another way to figure out is by documenting.  I use calendars, websites to make graphs and charts to document behavior, food, supplements and if she is going to bathroom.  This is a great way to see the big picture when I'm getting bogged down by all the little details. I sometimes even go back for months and try to put it all together.  Hoping that something will make sense and jump out at me.
Lastly I  pray about what is happening that I will get a sign or a feeling on what I should do next.  It all seems to come to a head at some point but usually waiting is better than reacting.  That has been a hard lesson to learn.  Years ago, when meghan was very sick and seizing so much I don't want to recall, we would react with medicine right away. Some of the time it was the right thing to do but other times, it was not!  It was like we had to do something for us to feel better.   I remember regretting so many treatments because it was so emotional.  I've learned over the years to slow down, watch and wait!  In that order!  I think you could probably apply this to many circumstances in life!
So here's to being a  detective for today and hoping I will get an answer sooner rather than later.