Week #12 @ The Dahlhouse: Fight

Week 12 found me cleaning up Luke's room in preparation of his return.  The key to my sons heart is playing cards, chap stick and pocket knives...apparently. LOL.  The Thursday before he came home, I was ready for him to be with us again.  It was the longest separation we have had.  It was one day short of two weeks.  Although the trip to Washington DC was 10 days, Mark and I were in Las Vegas the week prior.  We missed seeing him off by about 24 hours.  

I was so thrilled and happy to have all four of my birdies in the nest once again.  A quick trip through Taco Bell as Luke was starving, and then home.  It took Luke a full week to recover sleep wise from the trip.  He missed Monday and Tuesday from school and napped every day, sometimes going to bed as early as 6pm.  By the following Sunday he had finally caught up.

Monday afternoon found me ready for my big meeting with the school districts special education department.  It was a meeting to determine if they would evaluate Grace for special services.  I have observed a "typical" pattern for Grace in her childhood.  The pattern is this: I know she is behind, but when I advocate for her, they always say she is "behind" but not "behind enough" for anyone to do anything about it.  Monday's meeting with the SPED team was no different.  They told me that if she was in public school (and not private school) she would access to, and have been receiving intervention services to help her with her deficits. They felt if they evaluated her for special services now they would not get a "true picture" of her.  Since I was on my own, facing three district reps, I went to war, and told them that I needed them to evaluate her.  I need to know where she is at.  I need someone to stop putting Grace off, and take a look at her, as she is now, and tell me where she is academically, socially and emotionally.  Then I cried.  The big ugly cry because I am so tired of saying the same things over and over.  I feel like no one in position to help her is listening.  They actually handed me paper towels because they had no tissues available. And then we all signed the forms to evaluate Grace.  I won.  It was ugly, but I got what I wanted as a parent.  Finally.

I feel like I am fighting constantly to get what my kids need.  I fought for Luke's IEP and services, pretty much throughout his whole school career so far.  We have encountered service providers that don't want to give services, teachers who didn't read or follow the IEP, and Mark and I not being provided with current accurate information.  I fought for Matthew to receive services with Infant Toddler Early Intervention.  Even after QUALIFYING for services, I was told that they didn't provide that "type" of therapy for a 10 month old.  There suggestion was to "read more books" and "play games."  To that I fought back saying...."No...if he qualified for services then you will serve my son!"  Now I am fighting for Grace...and sometimes fighting for three of them at the same time.  I find it very difficult to understand why it is so impossible to get anyone to help these kids!  I know a big piece of the puzzle is money, but these are children with documented diagnosis's and needs.  They deserve help.  I get so angry when I see the sign in the pediatrician's office that says, "Babies Can't Wait."  Well...let me tell you something...they are going to make your baby wait.  I am still waiting on an occupational therapy evaluation for Matthew.  It is scheduled for May 7.  I have been waiting since December 2017.  But I will fight for these children till have no breath left in me to fight.  They were each entrusted to me, and are so valuable and so worth it.  Though I am tired and at times discouraged... I press on...

Medications are apart of a special needs life.  It has been something I have adjusted to, because growing up only my parents took medications on an ongoing basis.  This is what it looks like when everyone's medications refill at the same time.

Tuesday brought with it another meeting.  I am currently on the search for Luke's High School.  It is a decision that I do not take lightly.  We have considered EVERYTHING.  And now I have whittled it down to a few choices of places that we are going to visit.  It is a very long process, but I keep trusting that the perfect fit will reveal itself to us at just the right moment.

Book talks in first grade...

Schedule...

Just "hanging out" at Costco.  Train and all.

I have dove head first into researching ADHD, not what it is, but how I can understand Luke better and meet him where he is at.  I am looking to improve executive functioning and homework.  It is a big world.  I found a set of books called HOPS that includes a program that can improve homework completion and organization with children with ADHD.  At $85 plus shipping it is an investment.  Don't have them yet.

Enjoying the laughs from this crazy one.  Gigi never ceases to keep me laughing at all the right moments.  From finding my mother's senior picture, to writing me crazy notes so I don't forget to pick her up at the right campus....LOL... "PS. Don't forget ME mom!!!!"  Gosh I just love her!

Celebrating this unicorn princess with a party at Dizzy Castle with all her friends from her 1st grade class.  She had such a good turn out and it was perfect for her.

We ended the week coloring Easter Eggs.  I missed my mama being there (as she usually heads up this activity with the kids) but she wasn't feeling her best.  So I subbed in.  Bella LOVES dying Easter eggs the most.  Her typical pattern is to dye all her eggs quickly...then she re-dyes all her eggs again, and then at the end begins to spoon different colors of egg dye to create her own colors.  The decorating of eggs ends when I pry the cups of color out of her color stained hands.  She's pretty much the best!  All my kids are!