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!