Transition

     Transition is a word we all have heard but for those that have kids with medical and cognitive disability you hear it very often.  In fact, I have heard it as early as elementary school.  I was fortunate to be able to attend the Wisconsin Transition Conference this last week in the dells.  There were many speakers, agencies and information to get "what a parent needs" to get ready for transition.  What that means for a parent like myself, is to get all my ducks in a road approaching to 18 and the adult world. Its a mouthfull and its overwhelming to say the least. There is guardianship in which you have to claim your son/daughter can make decisions, some or none and make you the guardian instead of the parent that you have been for the last 18 years. There is a special needs trust, SSI, state programs and post secondary education or college to most of you. It's basically another language.
Meghan will be 18 in 2 years. So I have some time right? As you know time seems to be flying by and so much to do.  Fortunately I have the right people that I've met over the years that know the ropes to help me through it but so many things to do and another transition is so emotional! This is my young lady soon to be an adult! But ..... she is limited in what she can do and that is where it gets very tricky.
Luckily for us and for meghan that I know that she has opinions and we have to work with her on her communication so she can tell me what those are.

The session that was so excited about, that I saw at the transition conference was one on a autism college right here in Wisconsin. Its called the Wisconsin Independent Life College.wisconsinilc.org/  They are located in Waterford,WI.  What is so amazing about this college is that it is supported with RPM(the communication method), that my daughter is using. Their presentation was all about the students, they have 3, telling people their thoughts by spelling on the letter board.  It was amazing.  I know that this is the place Meghan could and will attend in 5 years when she is done with High School.  At this time, it is not residential but I expect that they are moving towards this.
So when I saw there presentation I asked what they work on at the College.  They told me that they are doing an online course, book club, prevocational skills, life skills, career and job development but it is very individualized.  But for us, this is exactly what Meghan will need.  Not forgetting, she still has a medical condition that will limit her.  The difference is that we know all of these people.  It is a small world with RPM.  So they have known us since 2008!  That gives Meghan and I so much more comfort.
I have been praying for this for a long time to have some clear paths to go and this is one that God has led us to!
That's why it is so important to Pray big and know that he will direct your path!  This is an exciting and challenging time for all of us.  Having those resources for Meghan and for us is going to make it so much easier.

Got to have Faith

If you would have told me a year ago or more that I was going to be a spiritual mentor I would have questioned you!  That is indeed what happened this last month with a great group right here in Oconomowoc, Wisconsin.  The group is called Snappin Ministries.  This is a very unique group which offers support for families with special needs children.  They offer support in the means of resources, respite events and now mentor program.  I have been a support parent with Parent 2 Parent for over decade so when this opportunity lend itself to me I thought about it.  I didn't act on it when I was exposed though.  I had learned about Snappin Ministries about 3 years ago at a bible study in our church.  I wasn't ready.  I wasn't ready to support someone else!  I could barely support myself.  Am I ready now? I don't think this is ever something you are really ready for but I am pushing myself to that next tier of support spiritual! I don't say this out of haste but really have no idea how people survive if they don't believe.  I mean believe that Jesus saved them and that they have hope in the future.  I know those early years when I struggled physically when my daughter was suffering and so was I.  I didn't pray as often as should have and still struggle with this.  But the difference is that I can see how God is working in my life and others for good.  You see Meghan and Lindsay both got confirmed last year.  I can say I wasn't sure until last year that Meghan would get confirmed.  God showed us that she was capable, her medical status improved, we found a new treatment and we found people to help us along the way.

Back to being a spiritual mentor.  I embarked on this new endeavor with 2 other mentors and our fearless leader Barb Dittrich-from Snappin ministries.  We read 2 amazing books.  Books that rocked me to my core wishing I had had those books 13 years ago when Meghan was first diagnosed.  Now others have them, they have mentors and they have  information, support to have God direct them how to parent their special needs child, how to improve their faith, how to connect with others and more.  So do you have faith? Do you have the tools do parent your child with special needs spiritually? 

You may want to consider requesting a mentor!  They are immensely helpful not only for resources but also for your spiritual growth. 

What was even more amazing is that I found my own mentoree.  She lived about 3 miles from my house and she found me.  She had picked up my card that she found in our small community in Hartland, Wisconsin and called me.  It was a match from the start. As I began sharing some things about treatments, therapy etc. I had mentioned Snappin Ministries in our conversation.  She started to tear up.  She needed affirmation about something there I was.  So as we talked a few more times I told her about the mentoring group and would she want to hook us with me.  She said Yes.  So our journey is embarking on new experiences, growth and human connection.  I am so looking forward to what God has in store for me as a mentor and what blessings he will provide for all of us involved. 

Resources:

Jolene Philo:  A different dream for my child.  Different Dream Parenting

Snappin Ministries  Snappin.org

Why is she behaving like this? Could it be????

Meghan 7

Over the last few weeks Meghan has had a lot of behavior at school.  I have gotten a lot of negative feedback on the way Meghan is behaving.  Its very hard for us mom,dad's to hear what she is doing and what she is NOT doing-Learning!  My detective hat goes into vigilance mode.  I am looking at her supplements, medication and if I changed anything that could be causing the problem.  And then the seizures start!  As I put each seizure on her seizure form I push myself to figure out what is going on.  Did I forget a seizure dose, did the new supplement now causing more problems, is she getting her period?  What I tend to forget is that when she gets sick I usually don't see any symptoms for at least 2 weeks.  For this sickness it was 3 weeks.
Why? I'm not a neurologist or a doctor of any means but what I have seen over a decade -this is my theory.  Everything changes!  Her neurology, her medication levels, her ability to follow simple directions and her frustration level goes up exponentially!
I love my teacher and team but they clearly do not understand how this can affect her school performance!  Even if they do understand what do we do? Here are some of my ideas:
1. Lessen talking so she doesn't go overloaded
2. Step back expectations and give her more rest periods
3. Allow more downtime
4. Go home early to rest
5. Try to figure out what is going on with your child.
6.  Most important educate her school and home staff to understand and have ideas to support her during this time.
7. Be patient- don't change anything!  If you do you will not know what is doing what.

I used to get so impatient that I would increase medications which is the worse thing you can do.  Most of the time she would get worse especially when we increase medications.
Many of you don't have a decade behind you of experiences of when your child gets sick but this is a time that I look back and smile.  When Meghan was much younger she would get sick all the time.  She was dealing with weak immune system, more seizures, and more neurological change.  Now a days, she does not get sick very often and many times we will forget that this could be the problem. That in itself is a good thing. What is more amazing is that when she does get sick she sleeps!  The days of being up for hours and hours, seizures, not eating,ER visits, dehydration, and drinking are gone.  When she gets sick I can reflect back and see how far we  have come! Now when she gets sick she sleeps, she watches movies and she allows her body to heal!  So for all of you, that you are in the younger years, I hope that this will comfort you to know it will get better with age.
So as you are walking a chronic illness journey consider when behavior changes, that your child could be getting sick.  There are things you can do to help them deal with the changes that is going on with their body during that time.  If there are things you do that help I would love to hear from you!
I would love to hear from you if you do anything that really helps your child when they get sick!

My gift!

    I had the pleasure of meeting a friend that I met through our journey with Epilepsy this morning for coffee. I often think of the gifts I have received by Meghan having Epilepsy. There was a time that there was no way I would say there were any! My denial stage.  The one that i would say that I couldn't do this, I don't know what to do stage?  This is one of them.  Meeting all the moms, families, providers.  The people that you will never forget!

    I was fortunate to meet 5 very special women on one of the first Epilepsy Foundation support group meetings I attended.  It was more than a decade ago.  But still after 13 years we are friends, actually family.  A very special group/family.  They know things about me that no one else does and visa versa.  We have all gone through stages where we are depressed, joyful, overwhelmed and ANGRY! But those 5 women have helped me actually saved me.  We sometimes call each other the same day and other times we don't speak for months.  But we all know that we can if we need each other.  We all have gifts.  I have the gift of gab!  That comes in handy sharing resources, books, ideas, techniques and ways to help their child.   The bottom line we all help each other in the journey.  I believe God put these women at the meeting and gave me what I needed.  We all get together, not as often as we would like but we go out to dinner and enjoy each other.  If there is one thing that I would say has  helped me are these 5 women that God put before me. If you are in this place with Epilepsy or a chronic illness find a friend that is in your circumstance.  The bond you will feel will be natural, special and perfect.
 The other gifts that I have received are touching peoples lives. Some that want you to and others that don't.  I think about all the lives that we have touched over the years.  It could be the plebotomist that took Meghan's blood weekly, the cleaning lady at children's that would always have a smile on her face, the school districts, the teachers, the families, lindsay's friends.. the list goes on and on. I also have gained the opportunity to speak in front of hundreds of providers/doctors and tell my story.  I have worked on Epilepsy projects, wrote for various organizations in parenting a child with chronic illness and made people hear our story.  Good or bad.  I have been on tv several times, wrote newspaper articles and help others in their journey.  I think the biggest gift I have received is that I was trained almost 30 years ago to work with brain injuries.  God put me in that position and now I am equipped to do all that I need to for Meghan and others.  What a gift that is.  I didn't want to hear it from my mom but she was right. I had the skills to do this and do it well!
     All of us have gifts.. What is your gift? I feel blessed to be able to recognize my gift.  Can I help you or someone you know?  If I can please contact me at Epilepsy Awareness Resources.com

High School here we come!

Here we are another start of the school year.  It never ceases to amaze me how many things there are to do for a child with a medical condition for school. This year I had started with being the Parent Engagement liaison at our High School, a registration time for students that had special education services.  Only a few parents took advantage but it was very well received.  Even doing this there were so many things that clearly are not applicable to my kid and why not?  Why can't I get the information ahead of time so I can turn it in like everyone else?  Why don't we know what section of Biology is for girls only?  The list goes on and on.  I know that being the advocate that I am, this will change.  But this takes time, lots of it and patience.  I continue to strive for more understanding, knowledge and treating our kids the same as the other students.  I know they have challenges, issues but don't we all!
As we start the year for Meghan, her sister is now in the building as a freshman.  It is so refreshing to have them in the same school.  I know for Meghan she loves seeing her sister even if she doesn't show it. In fact, I think it was the second day at school she told me the best part of her day was seeing her sister! It will be interesting to see if Lindsay likes seeing her sister? That is something still up for debate.  Coming up very soon is Homecoming dance.  Ofcourse Meghan is going maybe with a caregiver this year but she's going even if just for 1 hour.  Her sister on the other hand is worried about being asked by a  guy? Who she is going to go with ? Etc Etc.  I think sometimes our kids with special needs have a better attitude.  They don't worry about all the social pressures and just enjoy the moment.

So this is going to be a year of transition, change and adolescent at its peak.

Our needle in the haystack!

My daughter, Meghan was diagnosed with Epilepsy 12 years ago last week. Thinking about those 12 years becomes very emotional! When I think about all that Meghan has been through and our whole family has encountered it becomes very overwhelming. We did all the conventional Epilepsy treatments including: medications(I think we have been on 15 drugs), Ketogenic diet, modified Atkins diet, VNS(vagus nerve stimulator), and brain surgery. With every new treatment we hoped, prayed that this one would be the one that would work. We would go through the honeymoon period, that Meghan would be better and then it would all go back to what had occurred or worse. It painstakingly slow when we decided to change medications, treatments. You see, Meghan was very sensitive. I am talking sometimes when we changed medications, or treatments she would be worse. I remember thinking to myself I am doing this to her! How can these treatments that are supposed to help her make her worse. It doesn't seem right. I, found my gut and acted on it.

Fast forward to 2006 was when our world changed. We decided to take a different approach to her Epilepsy and begin homeopathy. I give me dear friend Elizabeth the credit since she referred us. This was her homeopath and was seeing good results for her daughter that also had severe Epilepsy. Our mindset changed with this new treatment. It was not miracle by any means that she was cured or talked. It took years to see results but what we saw from homeopathy, was that it helped jumpstart her immune system. Her colds and sicknesses didn't land us in the ER anymore and she was able to fight off illness better each year. At the same time coordinated carefully we started working with a Dan(defeat autism now) doctor. We began our journey with supplements, allergy testing and blood tests. As we began adding these supplements into her already complicated regime I really didn't see a big change. I questioned myself and why we were spending all the money on this treatment. But what I found in 2010 was nothing short of a substantial needle in a haystack. My Dan doctor had talked to me and told me in the very beginning that he thought she had inflammation. Ok I said what do you do about that? So we tried yeast protocol which landed her in the ER because of a full body drop and 9 stitches. We tried that 2x each time huge reaction. So in the summer of 2010 we did a trial to see if we would see a change in her seizures. Well you guessed it we did. A 50% reduction. So for the full week we went from 14 seizures a week to 7. We couldn't believe it. We began the slow process of getting her on non steroidal anti inflammatories. It took all summer to get her on it and she reacted with every increase, but we kept with it. 2 years later we are still seeing the payoff of 50-70% reduction. During this time we continue to see our neurologist who at first wasn't really on board. He is a very open minded physician actually the first one that would listen to some of the alternative treatment. He told me it wouldn't hurt but probably wouldn't help! As he saw the months turn into years he is now a believer. We think this is huge! Incidentally that year at the American Epilepsy Society meeting inflammation was in several of the presentations. Now as I listen to webinars, read articles from physicians, inflammation is mentioned very often. We don't have anymore treatments from our neurologist but as the Epilepsy community does their studies and the results come in maybe we will have more meshing of physicians from the Autism and Epilepsy world.

I tell you our story because it wasn't something anyone mentioned for 12 years in the Epilepsy arena and maybe it would help your child. I'm not sure if the Autism is part of it or not but finding a doctor to be willing to try it would be worth it.

I feel that this treatment is giving us a clue maybe testing, additional treatments or diets that will further help her have even less seizures! If I knew then what I know now I would start the alternative treatments sooner and finding a neurologist that was open minded to all of this. They are hard to come by but finding one is essential for our kids, adolescents that are not responding to conventional Epilepsy treatments.

I hope you will keep looking for your needle in a haystack and never give up!

My beautiful daughter

It was the coldest night of the year in Wisconsin on Saturday.  We had talked about going to the dance at her high school. This would be the second one  she has attended.  She clearly showed me on her iPad with the yes / no icon that she wanted to go!  Sometimes she pushes either button just to give me a response but this one was deliberate and as she looked into my eyes as she pushed it I felt her presence!  Her and I have bonded in a way that is hard to describe.  Since she hasn't really talked since 2006 I have learned her gestures, emotions and feelings in her expressions.  I wake up in the middle of the night if she is going to have a seizure-and I feel her frustration and a problem clearly before it happens.
This was one of the interactions that a felt like this.  If Meghan could talk like you and I, she would say something like this. "Mom thanks so much for thinking that I wanted to go to the  dance!" It's hard to have every picture available and every thought on paper to get her point across.  But, I felt I got it right this time.  This was more defined but the same theme as when I first took her to her first dance when she was in 6th grade.  I bring her in, take pictures and follow her around.  This time being high school it's allowing her to have more independence.  She still relies on me a lot and requires someone to watch out for her safety. Now we are trying to teach her how to be social.  She has lost those skills.  This beautiful friend of hers that we have had some interactions with from our church, came to the dance at the same time.  She was also the one that asked her to dance with their group.  For most, this really isn't a big deal but for Meghan and this group of friends it was very big.  She enjoys being around her peers and getting these short times of normal peer interaction, social experiences and fun is nothing short of pure joy for me!  I see her light up as she sees her friends and I see her friends trying to interact with her.  It's progress, it's life and it's beautiful to watch.
My eyes are open to new experiences to give to Meghan.  For most kids like Meghan, that have severe Epilepsy, we really don't know how long she will live.  This is the truth and something I keep close to my  heart and make the right decisions knowing that!  I honestly didn't think she would make it to high school and now here we are.  So when I see her growing, medically so much more stable and enjoying  her life as a highschooler at Arrowhead, I look for new opportunities that she will enjoy!  The dance being one of them.  I think as I find more experiences that she finds joy in she becomes more confident that she can do more and I think it opens more doors everyday for her future.
I know why God had me become an Occupational Therapist.  It was to learn that it was so important to give those skills to people to become more independent.  This is the same for Meghan.  I find it that there are some people that can do this naturally but most its very difficult.  It's difficult for them to let her fail.  Its hard to watch her struggle with zipping up her jacket.  It's painstaking heartbreaking to watch her forget how to do the simplest task.  But if we give up what will she do? Will she be better off if we do it for her and how will she function? That is why I continue to challenge her and give her opportunities that many would not do.  Some parents will resolve to have her stay home from the dance because it would be too hard, too emotional, too tiring and really didn't think there was a purpose.  I, on the other hand feel this is giving  her the confidence, success and the feeling of community at her high school.
I am very proud of meghan, and how she is improving in all aspects of her life.  It thrills me that she has so many interests and is willing to try new activities.  My beautiful Meghan will turn 16 this year.  Even though she will never drive a car and will need help the rest of her life, she has brought so much more to my life.  That is how I make sense of all of this.
For now, we enjoy these successes-actually they are miracles in our journey!  Find your miracles in your life and revel in them.