Wednesday, October 31, 2012

Great resource

I just saw this resource today and I have been reading it for awhile, and am very impressed.  It is for educators who are working with our kids with FASD.  This is a huge need as one of the number one issues I hear from parents is frustration with the school.

We have been blessed with our school situation as our school team has been wonderful and patient with all of our unique issues we have had over the years.  I know this is rare.  FASD is something that is not covered in the education of our teachers, and rarely for psychologists, pediatricians, therapists, etc.  It is a huge challenge to find professionals who understand FASD.  Today I talked to a parent who has a great therapist who didn't think pursuing the diagnosis would be helpful.  This drives me nuts.  But I am not going to blog about that- again.

I am really looking forward to the MOFAS conference tomorrow, and meeting many of the parents I have talked to this past month.  Tomorrow marks the one month anniversary of my new job as the MOFAS Family Resource Coordinator (FRC) for Hennepin and Ramsey County.  Ten hours is not enough, I can already see that!  I have met individually with 7 parents, and spent time on the phone with 4 more.  Had a great one plus hour phone call today with an amazing mom.

I am so glad that MOFAS has these FRC positions and some of the resources they are offering now-a-days.  Seven years ago when we first started on this journey (or I should say, realized that we were on this journey- we have been on it for 13 years!), I couldn't find a support group through MOFAS.  I tried to start one up in partnership with them even, but it never really got off the ground.  Then I went to a training that Kari put on, who I now consider a friend, and started to read her blog.  Then I started this blog.  Then I started to make new friends, moms with children with FASD.  It took awhile, but I started to have hope, started to learn new strategies, new approaches.  Felt support during some of the darkest times.  We are not done in this journey, we are not done with the dark times, or the bright times, but I feel very blessed to be able to share my experiences and resources with other parents- and to learn from them as well.

Tuesday, October 23, 2012

MOFAS Statewide Conference

It is not too late to register for the MOFAS Statewide Conference which is next week, Nov. 1st and 2nd in Bloomington, MN.  Check out the info here.  I will be there and would love to see you or meet you.  I believe there may even be a few scholarships left for parents, if you are interested, let me know.

When I first started this journey 7 years ago, I was desperate for info/trainings/workshops/seminars and stuff like this.  There was not as much as there is now.  This conference will not only be jam packed with good information, but it will also be a great time to network, find others, get support.  At the end of the day on Thursday, there will be the opportunity to split up by regions, and even go out to dinner together.  Please come, and let me know if there is any way I can help you get there.

My new email for my MOFAS Family Resource Coordinator position is and I would love to hear from you.

Friday, October 5, 2012

New job!

I started a new part-time gig this week.  I am the new Hennepin/Ramsey County Family Resource Coordinator for MOFAS (Minnesota Organization on Fetal Alcohol Syndrome).  There are nine of us that cover different parts of Minnesota, you can look here to see all of us.  The gig is roughly 10 hours a week and I am really excited about it.

I will be leading support groups, meeting individually with families who are struggling or want to talk, connecting with professionals and getting the word out about FASD in general.  So, basically, I will get paid a little bit for doing what I have been doing for years.  Yahoo!!!!!

If you haven't already registered for it, the MOFAS First annual Statewide Conference is coming up on November 1 & 2.  Info is here and I will be there and would love to see you all!  There are a lot of great things going on at MOFAS right now.  Check out their website.

Tuesday, October 2, 2012

That's my girl!!

A couple of funny Akila stories.  I have always said, that I have to laugh at some of her and our adventures together, or I would be institutionalized.

Last week, I received an email that Akila had shown a staff her journal and in it she was talking of harming herself.  This also happened when she first went to the RTC last spring.  Obviously, this can be a serious issue, but I know that Akila is not suicidal- far from it at this point in her life at least.  Last spring, she had seen another girl get put on "precaution" after being suicidal, and Akila was intrigued.

I was not worried when I got the email, Akila has been in really high spirits.  I spoke with her case manager the next day who told me the part that made me laugh.  They did put her on a one day "precaution".  A staff was in her room taking out all things that she could use to harm herself.  They take almost everything.  The staff was taking her stuffed animals and Akila was mad and asking why.  The staff explained.  Then she was taking Akila's hoodie as it has a string in it.  Akila got mad, and walked away saying "This is too much work, it isn't even worth the attention".  That's my girl!!!  The staff person said she had to leave the room so Akila wouldn't see her laugh.

One day last week she also told the nurse she was pregnant so they had to administer a pregnancy test.  It was negative (praise the Lord!).  Funny part of this, is that although we have had the "sex" talk many times, she doesn't usually get it, or understand the part about how you get pregnant.  I asked her about it, and again, she heard another girl saying this and liked the attention.  That's my girl!

She is an attention seeker, she can't stand it when someone else is in the lime light at home or anywhere, even though she seems to get most of the attention (positive and negative).  Gosh I love her, she keeps me laughing.  That's my girl!~

Seizure disorders and FASD??

Hi friends, life is crazy.  I have several blog posts brewing, and I am going to get to them this week!!!  In the mean time, my friend Jerrod Brown has a question for you.

He is putting together some info on if there is a connection between seizures and FASD and he wanted to know if any of you had any comments on this, or experiences.  So comment away if you do, and thanks ahead of time!